# What would YOU do? (TPO, Thyroglobulin, and TSI)



## bigfoot (May 13, 2011)

I realize I'm jumping around a bit today, and usually post in my thread over in the Hashi's area, but I wanted to post this here to get opinions. Thanks to the wonderful folks here (especially Andros) I have been following my thyroid more closely.

It now appears I have the Thyroglobulin Antibodies, TPO Antibodies, as well as TSI present. My endo didn't see any value to the TSI test (or ultrasound) for my case when I asked recently, and considers me with Hashi's / hypo. So I went and got it tested myself thanks to the urging here and of my family. I am being treated at the moment with Levoxyl.

Where should I go from here? Do I try to get another endo (this would be the third) to look at my case? Or just skip past all of that and go directly to an ENT for evaluation? Keep going with taking T4 and watching? I have no goiter, just some swelling that has reduced, along with a gazillion physical & mental signs and symptoms that come and go depending on the day. (Some likely from thyroid, some from low testosterone, and some from recently-discovered autoimmune hepatitis.) Quite honestly, whatever is going on is making a complete mess of my life.

4/20/11 - TPO Ab 253.7 (0.0-60.0)
4/20/11 - Thyroglobulin Ab 45.0 (0.0-60.0)
11/29/11 - TSI 31 (0-139%)

Thoughts? Suggestions? Who to see? Thanks!


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## Andros (Aug 26, 2009)

bigfoot said:


> I realize I'm jumping around a bit today, and usually post in my thread over in the Hashi's area, but I wanted to post this here to get opinions. Thanks to the wonderful folks here (especially Andros) I have been following my thyroid more closely.
> 
> It now appears I have the Thyroglobulin Antibodies, TPO Antibodies, as well as TSI present. My endo didn't see any value to the TSI test (or ultrasound) for my case when I asked recently, and considers me with Hashi's / hypo. So I went and got it tested myself thanks to the urging here and of my family. I am being treated at the moment with Levoxyl.
> 
> ...


Remember; this is what I would do. See an ENT. Go to the top as they say. Enough is enough already.

Bless your heart. You know I am not surprised about the TSI; not in the least little bit. You probably have TBII as well.

TBII (Thyrotrophin Binding Inhibiting Immunoglobulin)
http://www.ncbi.nlm.nih.gov/pubmed/1969138

For one thing; the mere presence of all 3 of the above would dictate the possibility of cancer. You need to know.

No wonder you could not tolerate the Cytomel. You see, your thyroid is not at all stable. One day it puts out, one day not.

Please give this some serious thought and let us know what the game plan is.


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## bigfoot (May 13, 2011)

Andros -- thanks, I really do appreciate it so much! I was crossing my fingers that the TSI test would come back negative, but at least it now gives me another direction to head in. I am sitting here with a list of potential doctors; my gastroenterologist mentioned seeing a rheumatologist for my joint pain, my endocrinologist recommended seeing an neurologist for my memory and cognitive problems, my PCP isn't sure what to think, and I am stuck in the middle of it all, haha! Unfortunately, endocrinologists are in short supply and the one I have now is pretty darn smart and light-years ahead of the last one I saw. But my wife is upset that he passed on the TSI test and ultrasound so quickly -- she can't understand why. (Heck, neither can I.)

I still find it so weird that as I would be bumped up from dose to dose of Levoxyl (say, 75mcg to 88mcg), I would have about a week of feeling pretty good, thinking everything was on the mend. Then things would peter out and it would be back to the usual grind.

Yes, you are totally right -- no wonder I couldn't tolerate the Cytomel T3! I wonder if this is the same response when a small increase from 88mcg to 100mcg of Levoxyl took my TSH from 2.xx to 0.15, along with my FT4 from ~1.00 to 1.85.


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## bigfoot (May 13, 2011)

I guess I should ask -- should I be looking for a standard ENT, or am I looking to consult with a surgical ENT?


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## Andros (Aug 26, 2009)

bigfoot said:


> Andros -- thanks, I really do appreciate it so much! I was crossing my fingers that the TSI test would come back negative, but at least it now gives me another direction to head in. I am sitting here with a list of potential doctors; my gastroenterologist mentioned seeing a rheumatologist for my joint pain, my endocrinologist recommended seeing an neurologist for my memory and cognitive problems, my PCP isn't sure what to think, and I am stuck in the middle of it all, haha! Unfortunately, endocrinologists are in short supply and the one I have now is pretty darn smart and light-years ahead of the last one I saw. But my wife is upset that he passed on the TSI test and ultrasound so quickly -- she can't understand why. (Heck, neither can I.)
> 
> I still find it so weird that as I would be bumped up from dose to dose of Levoxyl (say, 75mcg to 88mcg), I would have about a week of feeling pretty good, thinking everything was on the mend. Then things would peter out and it would be back to the usual grind.
> 
> Yes, you are totally right -- no wonder I couldn't tolerate the Cytomel T3! I wonder if this is the same response when a small increase from 88mcg to 100mcg of Levoxyl took my TSH from 2.xx to 0.15, along with my FT4 from ~1.00 to 1.85.


Yes; increasing T4 could do the same thing on any given day.

I am with your wife. Actually, I would insist on RAIU but for that to be worthwhile you would have to go off all thyroid replacement meds for about 8 weeks so ultra-sound would be the best route to go right now.


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## Andros (Aug 26, 2009)

bigfoot said:


> I guess I should ask -- should I be looking for a standard ENT, or am I looking to consult with a surgical ENT?


Surgeon; experience w/thyroid.


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## bigfoot (May 13, 2011)

Oh man, and I thought finding an endocrinologist was hard!


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## Andros (Aug 26, 2009)

bigfoot said:


> Oh man, and I thought finding an endocrinologist was hard!


It might be easier than you think. I hope so. Keeping fingers crossed here.


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## Octavia (Aug 1, 2011)

I may be wrong on this (pretty sure I'm not), but I believe ALL ENTs are head & neck surgeons, and while I'm sure some do more thyroid surgeries than others, I'd be shocked if there are many who are just plain not experienced with thyroid surgery.

I may also be wrong on this, but I think the only reason it makes sense for you to see an ENT is if you are considering surgery. Otherwise, the ENT probably won't do much for you that an ENDO wouldn't.


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## bigfoot (May 13, 2011)

Things continue to get more interesting... apparently the tingling (pins & needles) that I have been feeling the last couple of days after starting Prednisone for autoimmune hepatitis could be tied into thyroid changes as well. So now my gastroenterologist is concerned and has me talking to my PCP to watch for changing thyroid levels. He feels it could be an autoimmune issue rearing its head, or else that the Prednisone is affecting my thyroid, or long-shot of Prednisone causing the tingling as a side-effect itself.

Either everything is starting to break free and come to the surface, or I have some incredible luck!

Quite honestly, I would consider surgery at this point. I know there are a few more diagnostics (ultrasound, TBII test, etc.) that have not been done on me, but I wonder if an ENT would consider my case anyway. My concern is the potential for cancer, as well as this incredibly fun autoimmune merry-go-round that I can't seem to stop.


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## Koof (Nov 9, 2011)

I think I would still request an ultrasound, to get a good "picture" (pun intended) of what you are dealing with. It might help you decide what to try next AND it would give the doctors you see a good idea of what you have in there. Now, if getting an ultrasound will take you 6-8 weeks and a lot of headache I'd skip it, but explaining that you are concerned about cancer might get you in.

Of course, this is completely my own opinion and I have virtually no experience here, but it makes sense to me


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## McKenna (Jun 23, 2010)

> It now appears I have the Thyroglobulin Antibodies, TPO Antibodies, as well as TSI present. My endo didn't see any value to the TSI test (or ultrasound) for my case when I asked recently, and considers me with Hashi's / hypo.


This is the problem with possible Hashitoxicosis. Endos see some numbers reflecting hypo and they never bother to test for TSI. I had to push to get my TSI done also, actually going over my endo's head to my family doctor to get it.

An ENT should be able to give you an ultrasound and FNA biopsy. If you have not had one yet, I think you should before you make any decisions. As Andros wrote, cancer needs to be ruled out.



> I may be wrong on this (pretty sure I'm not), but I believe ALL ENTs are head & neck surgeons, and while I'm sure some do more thyroid surgeries than others, I'd be shocked if there are many who are just plain not experienced with thyroid surgery.


When I interviewed surgeons for my TT, one was an ENT in practice with 3 other ENT's. He was the only one in his practice that did thyroid surgery. The other 3 wouldn't touch it. Calling around to two other practices in the area and NONE of the ENT's did thyroid surgery. I wound up with a general surgeon who specialized in endoscopic thyroidectomies.


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## joplin1975 (Jul 21, 2011)

Koof said:


> I think I would still request an ultrasound, to get a good "picture" (pun intended) of what you are dealing with. It might help you decide what to try next AND it would give the doctors you see a good idea of what you have in there. Now, if getting an ultrasound will take you 6-8 weeks and a lot of headache I'd skip it, but explaining that you are concerned about cancer might get you in.
> 
> Of course, this is completely my own opinion and I have virtually no experience here, but it makes sense to me


Agreed. Additionally, it helped me get into my surgeon a little early, having that u/s in hand that showed lots large nodules. (I mean, let's be honest, the people are in medicine to make money...when I show up with a picture that shows a thyroid that's a hot mess, I come with dollar signs on my head!  )


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## bigfoot (May 13, 2011)

Thank you all very much for the input! (Feel free to keep it coming.) I called and made an appointment with an ENT for this Friday. That should hopefully get me a good second opinion and a fresh set of eyes to look at all of this.

One question my wife raised is about the TSI. I know you have shared the various spots on the 'net that say, "You should not have any presence of this in the blood". Her concern is that there are lot of other references to having less that 140% as being "normal" or "within range" (including Lab Corp, who processed my labs). Is there a definitive medical text or article that spells this out?

Another concern is with the confusing wording. A lot of texts and references say that TSI can be present with Hashimoto's, Hashitoxicosis, as well as Graves', nodules / cancer, and hyperthyroidism. Is it possible to have Hashimoto's *and* TSI in the blood, all the while remaining hypothyroid? Or is it inevitable that at some point the TSI will rise and become dominant? It's kind of hard to sort all of this out.


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## Andros (Aug 26, 2009)

bigfoot said:


> Things continue to get more interesting... apparently the tingling (pins & needles) that I have been feeling the last couple of days after starting Prednisone for autoimmune hepatitis could be tied into thyroid changes as well. So now my gastroenterologist is concerned and has me talking to my PCP to watch for changing thyroid levels. He feels it could be an autoimmune issue rearing its head, or else that the Prednisone is affecting my thyroid, or long-shot of Prednisone causing the tingling as a side-effect itself.
> 
> Either everything is starting to break free and come to the surface, or I have some incredible luck!
> 
> Quite honestly, I would consider surgery at this point. I know there are a few more diagnostics (ultrasound, TBII test, etc.) that have not been done on me, but I wonder if an ENT would consider my case anyway. My concern is the potential for cancer, as well as this incredibly fun autoimmune merry-go-round that I can't seem to stop.


Yep; peripheral neuropathy.

Glad you have this appt. for Friday and I feel that an ENT will definitely consider your case.

For one thing, you cannot get your other health issues on track as long as you don't resolve the thyroid issue. I happen to know that for a fact and from my own experience.

That little thyroid gland governs our entire bodies; for better or for worse.

And there you have it in a nutshell. Sadly!


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## bigfoot (May 13, 2011)

You are sooo right it isn't even funny. My gastoenterologist repeatedly asked me what my endocrinologist thought about my thyroid status before starting this Prednisone treatment for AIH. I, of course, replied with exactly what I was told by the endo; that the 88mcg of Levoxyl is my right dose and labs are where they need to be, and to come back in 3-4 months for follow-up.

Obviously something, somewhere is not right. I don't expect every doctor to know everything or find everything. But my PCP wanting to put me on beta-blockers in the past and prescribing me Xanax recently is starting to make sense. Why, oh why, do they ignore the 800-lb. gorilla in the room? LOL


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## Koof (Nov 9, 2011)

bigfoot said:


> One question my wife raised is about the TSI. I know you have shared the various spots on the 'net that say, "You should not have any presence of this in the blood". Her concern is that there are lot of other references to having less that 140% as being "normal" or "within range" (including Lab Corp, who processed my labs). Is there a definitive medical text or article that spells this out?
> 
> Another concern is with the confusing wording. A lot of texts and references say that TSI can be present with Hashimoto's, Hashitoxicosis, as well as Graves', nodules / cancer, and hyperthyroidism. Is it possible to have Hashimoto's *and* TSI in the blood, all the while remaining hypothyroid? Or is it inevitable that at some point the TSI will rise and become dominant? It's kind of hard to sort all of this out.


I looked all over and found a good resource that made sense, and Andros helped me figure it out. The problem is I'm on my phone right now as I should be sleeping - 5 am comes quick! Since I can't link it, if you know how to search my posts you can look in my lab results thread. Andros found a good link and I quoted a few things. You can be hypo with TSI. Since TSI are stimulating, if you have blocking antibiodies they can overrule the stimulating ones. I think high TPO does the same. Whatever antibodies are most powerfult at the time rules how your TSH has responded and how you feel. Personally, my TSI was 93 but my TSH and symptoms seem to be usually hypo.

Sorry I can't answer any of your other questions.


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## Enigma (Jun 13, 2011)

Hi bigfoot-

Sorry you are going through all of this. It sucks. Plain and simple. I am playing around with doctors now who don't look at my labs other than the "hypo" part (lowish T4 and high-ish TSH) and tell me, I'm definitely hypo and give me more meds regardless of my high TSI (3.8 and 2.7 the last time, range of <=1.3) or high TgAb (433 range of <116). However, all my symptoms are hypER, by far, except for a few days here and there (i.e. this weekend my dry skin came back out of nowhere, I slept for hours, no heart palpitations, no anxiety, and constipation). Then, two days later, hypER symptoms come back for several weeks (racing heart constantly, can't sleep, moist skin, headaches, jittery/trembling feeling, anxiety, extreme hunger). But none of this matters to the doctors. No one cares. I even had one endo tell me to stop my medicine so I could prove to myself just how much worse it was to be hypo. Um, really?? I'll take those problems any day over not being able to function due to 115 heart rate and constant jitters and no sleep.

I am giving two more endos a shot- new one on Friday, and a holistic, integrative one in February. I have no hope for anything to be done, but at least it's worth a shot. And I have made an ENT appointment. I want this thing out. I'm done with doctors telling me how I'm SUPPOSED to feel and that 99.99999% of people don't respond this way to thyroid medication. Well, apparently, I'm NOT a member of the 99% (wish that were true financially, though) and this line they keep throwing out just tells me they have no idea what the h*ll to do with people like you and me.

I really think you need to demand an ultrasound. They have no idea what is in there. That is ridiculous, especially given your past health problems, that they aren't going through this thyroid problem systematically. An ultrasound seems so basic. I even got one "in office" during a consult at one endo's appointment. That was AFTER my "official" one in the hospital radiology lab. If you get an US, and they see nodules, etc., then you have more "ammo" to demand to have it removed. That's my plan, anyway (I have two small nodules, too small to biopsy, but I plan to use them anyway to say, hey, we'd have to do something about them at some point anyway).

Speaking of ammo, this thyroid stuff is like playing Russian roulette. Even if it is "just" Hashi's, you will still have fluctuations as it dies out. And giving meds on top of these fluctuations, or on top of Graves, is playing with fire. You never know when your thyroid is loaded and will start working, "fire", or stop, or start working too much. And trying to manage it with meds, on top of the unpredictability, is just impossible. It's not necessary. It's dangerous at worst.

Have you considered seeing an acupuncturist? I started in July and she has been a life saver. From her Chinese-medicine perspective, I've always been a hard case. Too much "fire" internally, but not showing it in other symptomatic ways (via eastern medicine's definition of symptoms). She has always been puzzled. Then when we found out about the TSI and really thought about my symptoms (western) more, she said it all made sense. The push and pull, swings from hyper to hypo, it is all perfectly reflected in her eastern medicine observation. She has offered to help me more often, rather than just supporting what western medicine is *trying* to do now, to actually aggressively treating my imbalances through acupuncture and herbal medicine. I am seriously considering taking her up on this since I am about to give up on western medicine and think it is too dangerous for me to take more levo. She is also a practicing pharmacist, and she has been 100% right about almost everything since I've been seeing her (calling out what will be a problem, before it was even a problem). I HIGHLY recommend scoping out any acupuncturists you can find, and they will often be disillusioned medical professionals that will be able to help you with "both sides" of the issues. I am not sure this is the answer long-term, but until we figure things out and come up with a solid plan, this might be quite helpful.

Also, I'd contact any medical schools/teaching hospitals within driving distance. They might like to "use" you to teach their students given your medical history and current complications (I know that sounds horrible, but you know what I mean). They may be more willing to try a bunch of things since they have other goals other than just treating you and making money. I would write a letter describing your history and your situation and send it to anyone in the endo/surgery departments of those schools. Then follow up with a phone call. It's worth a shot. I am going to try this pretty soon, once I get around to writing a letter.

Not sure if this helps at all... this is NOT easy. It is so frustrating... and has been debilitating.


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## chopper (Mar 4, 2007)

Enigma said:


> Hi bigfoot-
> 
> Sorry you are going through all of this. It sucks. Plain and simple. I am playing around with doctors now who don't look at my labs other than the "hypo" part (lowish T4 and high-ish TSH) and tell me, I'm definitely hypo and give me more meds regardless of my high TSI (3.8 and 2.7 the last time, range of <=1.3) or high TgAb (433 range of <116). However, all my symptoms are hypER, by far, except for a few days here and there (i.e. this weekend my dry skin came back out of nowhere, I slept for hours, no heart palpitations, no anxiety, and constipation). Then, two days later, hypER symptoms come back for several weeks (racing heart constantly, can't sleep, moist skin, headaches, jittery/trembling feeling, anxiety, extreme hunger). But none of this matters to the doctors. No one cares. I even had one endo tell me to stop my medicine so I could prove to myself just how much worse it was to be hypo. Um, really?? I'll take those problems any day over not being able to function due to 115 heart rate and constant jitters and no sleep.
> 
> ...


Holy cow! You and I have the same numbers, same labs and same exact symptoms.....

Did replacement hormone make you feel any better? I've got a bottle of Synthroid sitting on my counter and am afraid it will kick start the heart palps real bad again. Thankfully, I think my thyroid is finally starting to give out so I have felt more hypo than hyper lately but when those hyper bouts do show their faces they still suck - same deal as you, resting heart rate around 112, shaky, dizzy, hot as hell, cant sleep for days....then it all goes away and Im left in a half a coma -exhausted from not sleeping and the hypo side.

How do the pills make you feel? Did they help at all? Last time I took my Synthroid was about 5 years ago when I really had more hyper than hypo and I thought I was gonna die...I felt horrible....all it did for me was exaggerate the hyper symptoms....

Here's a piece I wrote about it:

http://www.thyroidboards.com/hashitoxicosis/


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## bigfoot (May 13, 2011)

Appreciate all the input! Yes, I am completely amazed that nobody ever did an ultrasound. They did an MRI of my pituitary though, go figure. That is one of my big requests to the ENT when I see her on Friday. Let's at least figure out what we're working with here.

My wife has asked me about seeing an acupuncturist, and I suppose I have held out with the hope that one of the more traditional doctors could help. Thanks for the recommendation -- I am starting to think that might be a good avenue to explore. I did see a good naturopath over the summer, but insurance money dried up.

What you guys are describing about each day being different makes total sense now. The constant push-pull scenario where one day it feels like you drank too much coffee, and then the subsequent crash and no energy for days on end. What a roller coaster. Ugh.

hugs3


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## Enigma (Jun 13, 2011)

nasdaqphil said:


> Holy cow! You and I have the same numbers, same labs and same exact symptoms.....
> 
> Did replacement hormone make you feel any better? I've got a bottle of Synthroid sitting on my counter and am afraid it will kick start the heart palps real bad again. Thankfully, I think my thyroid is finally starting to give out so I have felt more hypo than hyper lately but when those hyper bouts do show their faces they still suck - same deal as you, resting heart rate around 112, shaky, dizzy, hot as hell, cant sleep for days....then it all goes away and Im left in a half a coma -exhausted from not sleeping and the hypo side.
> 
> ...


Hi Phil-

I have to say, I am really disappointed that my numbers and symptoms are so similar to yours!! I have read your story in the past, and thought how awful it would be to feel like that! I was hoping that my numbers were just a "fluke". And now I know how it feels. It's horrible!!! My TPO was 869 (0-9) so I guess a bit lower than yours. I just don't understand how they can look at these numbers AND symptoms, and not do anything about it. Were you successful at trying to get your thyroid removed??

Replacement hormone has NOT made me feel better. In fact, to be honest, if I had known my life would crash and burn like it has since starting thyroid meds, I would never EVER have started them. My life has fallen apart, physically, emotionally, and socially. I have so many more ups and downs now (mostly hypER symptoms) than I ever had before. I've become a jittery mess, as if the doctors were making SURE I was living up to all of their "anxiety" diagnoses. Sometimes, within an hour of taking my meds (Tirosint .75mcg) I literally feel like my skin is crawling I am so jittery and anxious. And it's an internal jittery/trembly feeling, not quite hand-tremors jitters. I've tried generic, Levoxyl, also Armour, then levo with T3 added. Nothing has worked and they all have made me worse. Armour was by far the worst. After going over my history (including pretibial myxedema, heart monitors, anxiety, insomnia, etc.), that doctor even told me "wow, it sounds like you had Grave's in high school and now you are hypothyroid" and gave me 90mg of Armour right off the bat! That put me over the edge, big time, and was a horrendous experience ending with a colonoscopy, endoscopy, among other things. I have had a barrage of MRIs, blood tests, ultrasounds, etc. etc. which all come back relatively normal, except for all of my thyroid numbers, of course. And still, no one seems to know what to do (except for me).

The meds have helped some things... my dry mouth isn't *as* bad and in general my skin is more moist than it used to be. But those things change from day to day, week to week. And they make me feel bad in so many other ways, that I'd be happy to deal with those things over jitters, anxiety, insomnia, losing over 30 days of work (since September!) etc. etc. Also, these things that the "meds helped" also got better when I started acupuncture and Rolfing. So, honestly, I am not sure what has actually helped.

I wouldn't recommend anyone take these meds if they had any history of being hyper. I wouldn't wish my experience on my worst enemy. My life has completely fallen apart and I've had no support from the medical profession short of their flippant "stop taking meds to prove to yourself how much worse you could feel" comments, or that I must have mood problems because no one responds to thyroid meds like this. I am strongly considering stopping the meds until I am able to have the thyroid removed.


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## chopper (Mar 4, 2007)

Enigma said:


> Hi Phil-
> 
> I have to say, I am really disappointed that my numbers and symptoms are so similar to yours!! I have read your story in the past, and thought how awful it would be to feel like that! I was hoping that my numbers were just a "fluke". And now I know how it feels. It's horrible!!! My TPO was 869 (0-9) so I guess a bit lower than yours. I just don't understand how they can look at these numbers AND symptoms, and not do anything about it. Were you successful at trying to get your thyroid removed??


I just got a set of numbers yesterday. Check out my Free T4 in the basement but my T3 remains rock solid as always.....

*Thyroid Panel With TSH* *Date Collected: 12/8/2011 12:57:00 PM* 
*Test Description* 
*Result* *Range* 
*Units* 
Thyroxine (T4)001149 
5.6 4.5-12.0 ug/dL

T3 Uptake001156 
27 24-39 % Free

Thyroxine Index001164 
1.5 1.2-4.9 
*

TSH+T4F+T3Free* *Date Collected: 12/8/2011 12:57:00 PM* 
*Test Description* 
*Result* *Range* 
*Units*

TSH004264







6.97 0.450-4.500 uIU/mL

Triiodothyronine,Free,Serum010389 
3.3 2.0-4.4 pg/mL

T4,Free(Direct)019745







0.73 0.82-1.77 ng/dL


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## Andros (Aug 26, 2009)

nasdaqphil said:


> I just got a set of numbers yesterday. Check out my Free T4 in the basement but my T3 remains rock solid as always.....
> 
> *Thyroid Panel With TSH* *Date Collected: 12/8/2011 12:57:00 PM*
> *Test Description*
> ...


You are very hypo right now. Your FREE T3 is just barely above the mid-range of 3.2 as per the range supplied by your lab.

"If" you were pumping some T4 into your system, the FT4 would not be so low as it appears that you are converting but you don't have an ample supply of T4.

The thing is, we already know your thyroid is not reliable in that it puts out and then quits putting out and so on. So................; it is a conundrum.

When was the last time you had ultra-sound of your thyroid?

The above is my humble opinion.

We can't have our Administrator/Owner of this wonderful board not feeling well.

Hope you know how much you are appreciated for all you do.


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## bigfoot (May 13, 2011)

Quick update: Saw the ENT this morning and explained everything. Apparently they do deal with thyroid surgeries there. She didn't order an ultrasound, but did check my ear, nose, and throat (as expected). I mentioned the thyroid cancer concern but she said generally that would be with a goiter, etc. (which I do not have). Her concern about running an ultrasound was that it might turn up more issues than it was worth. She was friendly and helpful, and did suggest trying to see another endo for a second-opinion, and perhaps letting my present endo know the results of the TSI test to see what he thinks and go from there. She feels I am definitely hypo, based on talking to me and labs.

Also just scored an appointment this afternoon with a PA at a local urgent care, the same place where they discovered my Hashi's. I figure it's worth a shot to run all of the recent developments by her to see what she thinks; she seems to know quite a bit about thyroid stuff...

Gotta strike while the iron's hot! LOL


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## Andros (Aug 26, 2009)

bigfoot said:


> Quick update: Saw the ENT this morning and explained everything. Apparently they do deal with thyroid surgeries there. She didn't order an ultrasound, but did check my ear, nose, and throat (as expected). I mentioned the thyroid cancer concern but she said generally that would be with a goiter, etc. (which I do not have). Her concern about running an ultrasound was that it might turn up more issues than it was worth. She was friendly and helpful, and did suggest trying to see another endo for a second-opinion, and perhaps letting my present endo know the results of the TSI test to see what he thinks and go from there. She feels I am definitely hypo, based on talking to me and labs.
> 
> Also just scored an appointment this afternoon with a PA at a local urgent care, the same place where they discovered my Hashi's. I figure it's worth a shot to run all of the recent developments by her to see what she thinks; she seems to know quite a bit about thyroid stuff...
> 
> Gotta strike while the iron's hot! LOL


Oh, Lord. Well, some goiters grow inward and some are substernal so I am not so sure this lady knows her stuff.

And............

```
an ultrasound was that it might turn up more issues than it was worth
```
 Huh? Scratching my head here at that one.

Please let us know what the PA has to say.


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## bigfoot (May 13, 2011)

Okay, well, good news: I saw the PA this afternoon and explained everything that's been going on. When I said nobody had given me an ultrasound she couldn't believe it. Ordered me one right there on the spot for tomorrow. She also palpated my thyroid and said it felt enlarged. She is super-nice and very smart; knows all about the Free T numbers and whatnot. I asked about the TSI and she looked it up -- she still feels that I am hypo right now. She was also kinda surprised about all of the various medications I've been put on lately. Sounds like she has worked with a lot of thyroid patients in the past, including those that slipped under the radar of normal docs.

Yeah, I didn't quite understand where the ENT doc was going with some of her stuff this morning. She mentioned a couple of incidents in the past where FNA's had been done and there were bleeding complications. She also said a lot of folks are walking around with nodules to begin with. I think that was some of her hesitation; that doing a biopsy on anything and everything would be counter-productive or potentially damaging.


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## bigfoot (May 13, 2011)

Ok-dokey; had my thyroid ultrasound this afternoon, and got a voicemail with the results. Need to try to get a copy of the report for more details, but apparently there were two "small" nodules found. Sounds like the radiologist wants me to get another ultrasound, too. And the urgent care PA wanted me to follow-up with an endo as far as the results. More as I learn it...


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## Andros (Aug 26, 2009)

bigfoot said:


> Okay, well, good news: I saw the PA this afternoon and explained everything that's been going on. When I said nobody had given me an ultrasound she couldn't believe it. Ordered me one right there on the spot for tomorrow. She also palpated my thyroid and said it felt enlarged. She is super-nice and very smart; knows all about the Free T numbers and whatnot. I asked about the TSI and she looked it up -- she still feels that I am hypo right now. She was also kinda surprised about all of the various medications I've been put on lately. Sounds like she has worked with a lot of thyroid patients in the past, including those that slipped under the radar of normal docs.
> 
> Yeah, I didn't quite understand where the ENT doc was going with some of her stuff this morning. She mentioned a couple of incidents in the past where FNA's had been done and there were bleeding complications. She also said a lot of folks are walking around with nodules to begin with. I think that was some of her hesitation; that doing a biopsy on anything and everything would be counter-productive or potentially damaging.


Aha; the PA sounds impressive. Hope you get somewhere. Monday you get the ultra-sound? Oh, goodie!! I simply cannot wait. I am so anxious for progress, any progress on your behalf.

Let us know ASAP!


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## bigfoot (May 13, 2011)

Thanks Andros! Actually, I had the ultrasound yesterday. I'm going to see about getting a copy of the report tomorrow. Also, I'll be calling my endo to ask his thoughts on the positive TSI test (that he thought I didn't need) and the ultrasound showing two small nodules (again, that he thought I didn't need). LOL

Sometimes you just have to play detective I guess! And I'd be way behind the curve without everybody here.


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## Andros (Aug 26, 2009)

bigfoot said:


> Thanks Andros! Actually, I had the ultrasound yesterday. I'm going to see about getting a copy of the report tomorrow. Also, I'll be calling my endo to ask his thoughts on the positive TSI test (that he thought I didn't need) and the ultrasound showing two small nodules (again, that he thought I didn't need). LOL
> 
> Sometimes you just have to play detective I guess! And I'd be way behind the curve without everybody here.


It's true but while folks are playing detective, they are sick and in need of care and the whole time the money is flying out the window.

Please do let us know if you find out anything today.

We are all very interested parties!


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## bigfoot (May 13, 2011)

Well, nuts. I am trying to copy & paste from a PDF file, but I give up. So I'll type out the meat and potatoes from the 12/10/11 thyroid ultrasound report:

Findings:
The right thyroid gland measures 3.7 x 1.6 x 1.4 cm. The left thyroid lobe measures 3.8 x 1.2 x 1.2 cm. The isthmus measures 2 mm in thickness. The thyroid lobes bilaterally demonstrate mild diffuse heterogenous echogenicity and echotexture. There are two small hypoechoic nodules within the left thyroid lobe measuring 3 and 6 mm in dimension each. The larger nodule mastery is a fairly well-defined peripheral margin. No internal vascularity is noted. The smaller nodule demonstrates a less well-defined peripheral margin without internal vascularity.

Impression:
Two small hypoechoic nodules in the left thyroid lobe, indeterminate. Neither of these nodules has the appearance of hyperplastic nodule or colloid cyst. Follow-up ultrasound is recommended to document stability.


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## Andros (Aug 26, 2009)

bigfoot said:


> Well, nuts. I am trying to copy & paste from a PDF file, but I give up. So I'll type out the meat and potatoes from the 12/10/11 thyroid ultrasound report:
> 
> Findings:
> The right thyroid gland measures 3.7 x 1.6 x 1.4 cm. The left thyroid lobe measures 3.8 x 1.2 x 1.2 cm. The isthmus measures 2 mm in thickness. The thyroid lobes bilaterally demonstrate mild diffuse heterogenous echogenicity and echotexture. There are two small hypoechoic nodules within the left thyroid lobe measuring 3 and 6 mm in dimension each. The larger nodule mastery is a fairly well-defined peripheral margin. No internal vascularity is noted. The smaller nodule demonstrates a less well-defined peripheral margin without internal vascularity.
> ...


This is a good site. 
http://eradiology.bidmc.harvard.edu/LearningLab/central/Rogers.pdf

And another.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1665239/

Well-defined peripheral margin "could" mean calcification. This definitely needs followed up and when something is indeterminate, that tends to raise an eyebrow as well.

Might be a good idea to press for FNA.


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## bigfoot (May 13, 2011)

Well, I just dropped off the TSI lab and the thyroid ultrasound report to the endo's office this afternoon. His assistant is going to pass along the info to the doc -- the ball is in his court now. We shall see what happens next... And thanks for those informative links!


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## Lovlkn (Dec 20, 2009)

I'm late to comment on this post.

Try and locate a general surgeon who specializes in thyroid removal's -4-5 a week is your goal. My experiences have been that if a general surgeon specializes in thyroid's then that is likely your best shot.

If you do not need a referral and can get an appointment with a surgeon they will remove your thyroid. You have plenty of history and now a questionable sonogram so they will surely remove it if you ask.

My surgeon said when asked if insurance is ever turned down for a thyroid removal "NO" This is a surgery the health insurers don't question.


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## Andros (Aug 26, 2009)

bigfoot said:


> Well, I just dropped off the TSI lab and the thyroid ultrasound report to the endo's office this afternoon. His assistant is going to pass along the info to the doc -- the ball is in his court now. We shall see what happens next... And thanks for those informative links!


I would like to see the ball in your court and soon. How long do you think it will take to hear from this doctor?


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## bigfoot (May 13, 2011)

Might hear from him today, might not hear from him at all. I'm sure I ruffled a few feathers. Oh well. But when it's your health it's hard to sit and be patient and wait for more things to "break".


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## Koof (Nov 9, 2011)

bigfoot said:


> Might hear from him today, might not hear from him at all. I'm sure I ruffled a few feathers. Oh well. But when it's your health it's hard to sit and be patient and wait for more things to "break".


I understand 100%

Best of luck and I hope it's speedy too!


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## bigfoot (May 13, 2011)

Still no word. Now MY feathers are getting a bit ruffled!


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## Andros (Aug 26, 2009)

bigfoot said:


> Still no word. Now MY feathers are getting a bit ruffled!


If you ask me, "Yet another doctor bites the dust!" Not in any way is this reassuring.

Aaaaaaaaaaaaaaaaaaaaargh!!

You need a puppy upper!


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## bigfoot (May 13, 2011)

Thanks Andros! Yep, got our "puppy" snoozing on the couch here, LOL.

Just called and left another voicemail. I'm not expecting much, as it's Friday afternoon and closing in on the holidays.


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## bigfoot (May 13, 2011)

Just heard back from the office... there apparently was a slight miscommunication; the endo didn't realize that I wanted to be called back. I was starting to think maybe my file vanished into a black hole. His assistant let me know that he took a look at the TSI test (no Graves' disease) and also the ultrasound (yes, a couple of nodules, re-do ultrasound in 6-12 months to keep tabs on them).

I'm happy he at least got a chance to review the new data; it is reassuring to know he doesn't see any big red flags. Where I go from here onwards other than monitoring, well, I don't really know. This makes four docs recently (one PCP, one endo, one ENT, and one PA) who all feel I am hypo and have reviewed labs. Plus the original gastroenterologist who discovered the hypo, then the PCP who agreed and began treatment, and the urgent care doc who found the Hashimoto's. Plus one endo and one PCP who blew my worsening hypo (Hashi's) symptoms off pretty much altogether. So that's a grand total of seven doctors seeing hypo in the labs and symptoms. At some point I am starting to feel like David versus Goliath here.

If I am only hypo, then I would hope I can optimize my hormone levels in the future. But being on the Prednisone right now for the AIH kinda puts that on the back burner. Well, nuts.


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## Andros (Aug 26, 2009)

bigfoot said:


> Just heard back from the office... there apparently was a slight miscommunication; the endo didn't realize that I wanted to be called back. I was starting to think maybe my file vanished into a black hole. His assistant let me know that he took a look at the TSI test (no Graves' disease) and also the ultrasound (yes, a couple of nodules, re-do ultrasound in 6-12 months to keep tabs on them).
> 
> I'm happy he at least got a chance to review the new data; it is reassuring to know he doesn't see any big red flags. Where I go from here onwards other than monitoring, well, I don't really know. This makes four docs recently (one PCP, one endo, one ENT, and one PA) who all feel I am hypo and have reviewed labs. Plus the original gastroenterologist who discovered the hypo, then the PCP who agreed and began treatment, and the urgent care doc who found the Hashimoto's. Plus one endo and one PCP who blew my worsening hypo (Hashi's) symptoms off pretty much altogether. So that's a grand total of seven doctors seeing hypo in the labs and symptoms. At some point I am starting to feel like David versus Goliath here.
> 
> If I am only hypo, then I would hope I can optimize my hormone levels in the future. But being on the Prednisone right now for the AIH kinda puts that on the back burner. Well, nuts.


I sure don't want anything to be medically wrong on your behalf but I am not convinced that there are no red flags.

We will see what others think. Not to mention the pred is masking "all" symptoms right now.


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## bigfoot (May 13, 2011)

Thanks Andros! Yeah, that prednisone is definitely doing something. Bummer that, like you said, it is basically hiding a lot of things at the moment. Thankfully the tingling has subsided quite a bit. And my appetite has improved, along with the nausea and "sick" feeling diminished somewhat. Still have plenty of brain fog, random insomnia, and the fatigue. Who knows, perhaps the autoimmune hepatitis is the big player here. But I can't write off the thyroid, either. (Or anything else I may be missing.)

I did try calling a well-respected ENT office in the area and they would not make any recommendations as far as any endocrinologists. I called a local compounding pharmacy (very friendly) and they pointed me to another nearby naturopath's office. I am slowly but surely exhausting quite a few of the options around me. Ideally, I'd like to get a second opinion from another endo just to be 110% sure, and my family is on board with this. I've been browsing all the doctor review websites, burning up Google, and comparing listings with my insurance.


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## Andros (Aug 26, 2009)

bigfoot said:


> Thanks Andros! Yeah, that prednisone is definitely doing something. Bummer that, like you said, it is basically hiding a lot of things at the moment. Thankfully the tingling has subsided quite a bit. And my appetite has improved, along with the nausea and "sick" feeling diminished somewhat. Still have plenty of brain fog, random insomnia, and the fatigue. Who knows, perhaps the autoimmune hepatitis is the big player here. But I can't write off the thyroid, either. (Or anything else I may be missing.)
> 
> I did try calling a well-respected ENT office in the area and they would not make any recommendations as far as any endocrinologists. I called a local compounding pharmacy (very friendly) and they pointed me to another nearby naturopath's office. I am slowly but surely exhausting quite a few of the options around me. Ideally, I'd like to get a second opinion from another endo just to be 110% sure, and my family is on board with this. I've been browsing all the doctor review websites, burning up Google, and comparing listings with my insurance.


You know what? Why is it we all have to work so dang hard when we are so sick. Durn it, durn it, durn it!!

Some of your symptoms indeed sound like they may be from the autoimmune hepatitis. I am so sorry for this.


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## bigfoot (May 13, 2011)

Well, thankfully the prednisone is working on the liver! Just got a message from my gastroenterologist that my liver lab numbers are starting to look a bit better, and that I can drop from 20mg down to 15mg of prednisone until I see him next month. Woohoo!


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## Andros (Aug 26, 2009)

bigfoot said:


> Well, thankfully the prednisone is working on the liver! Just got a message from my gastroenterologist that my liver lab numbers are starting to look a bit better, and that I can drop from 20mg down to 15mg of prednisone until I see him next month. Woohoo!


Very very excellent!!! Now you can enjoy the holidays with alacrity!!! LOL!!


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## bigfoot (May 13, 2011)

Wow, this prednisone is some heavy-duty stuff. Been on the reduced dose of 15mg for the better part of a week and it is now kicking my behind. I don't think I've ever taken prednisone before -- the fatigue is ridiculous, along with all of the other fun side-effects. Who knows if it's my adrenals trying to catch up to the drop or what, but I am like a sloth, LOL.


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## Andros (Aug 26, 2009)

bigfoot said:


> Wow, this prednisone is some heavy-duty stuff. Been on the reduced dose of 15mg for the better part of a week and it is now kicking my behind. I don't think I've ever taken prednisone before -- the fatigue is ridiculous, along with all of the other fun side-effects. Who knows if it's my adrenals trying to catch up to the drop or what, but I am like a sloth, LOL.


Not liking to hear this. Many years ago, I in fact had prednisone induced Cushing's Disease. Not fun by any stretch of the imagination.

Here is hoping that the Pred has done the job for which it was intended. When do you see the doc for labs?


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## bigfoot (May 13, 2011)

I don't see the gastroenterologist until the first part of January, as he is out on vacation. <rant on> I did call his office to check in yesterday and ask about the prednisone -- the doc covering for him felt it was likely giving me the side effects. I asked about getting my thyroid and testosterone labs tested just to be sure everything was still okay in that realm. They referred me back to my PCP. I called my PCP and left a detailed message. Go figure, I have not heard anything back after two days. Argh! <rant off>

I do however get liver labs drawn the end of this week to check how well the prednisone is working. I was hoping they could piggyback any other labs onto that draw. But no, simple and common-sense is right out the window... LOL

Yikes, that Cushing's Disease does not sound like anything enjoyable! I may ask my gastroenterologist next month about tapering down off the prednisone a little more slowly, at 2.5mg increments instead of 5mg increments.


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## Andros (Aug 26, 2009)

bigfoot said:


> I don't see the gastroenterologist until the first part of January, as he is out on vacation. <rant on> I did call his office to check in yesterday and ask about the prednisone -- the doc covering for him felt it was likely giving me the side effects. I asked about getting my thyroid and testosterone labs tested just to be sure everything was still okay in that realm. They referred me back to my PCP. I called my PCP and left a detailed message. Go figure, I have not heard anything back after two days. Argh! <rant off>
> 
> I do however get liver labs drawn the end of this week to check how well the prednisone is working. I was hoping they could piggyback any other labs onto that draw. But no, simple and common-sense is right out the window... LOL
> 
> Yikes, that Cushing's Disease does not sound like anything enjoyable! I may ask my gastroenterologist next month about tapering down off the prednisone a little more slowly, at 2.5mg increments instead of 5mg increments.


I hope the liver labs come back excellent!! You need some good news!!! Good idea about weaning off even slower. Very good idea!

In spite of the negativity associated w/Prednisone, it did help save my eyesight and I am positive it will do the same for your liver. A small price to pay.


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## bigfoot (May 13, 2011)

Thanks Andros! Yes, I think it is doing its job, but it is sure a big whammy to my body. Glad to hear it worked for you -- you're right, there is a lot of negativity to the prednisone. One of those Catch-22's, I guess.


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## Andros (Aug 26, 2009)

bigfoot said:


> Thanks Andros! Yes, I think it is doing its job, but it is sure a big whammy to my body. Glad to hear it worked for you -- you're right, there is a lot of negativity to the prednisone. One of those Catch-22's, I guess.


"The Great Dichotomy!"


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## bigfoot (May 13, 2011)

Quick check-in; been gone from the boards as we took a quick vacation and I started a new job (swing shift) this week. Between work and sleep I've had a few minutes to eat and that's been about it, LOL. Unfortunately my most recent liver labs went the wrong direction, so the gastroenterologist who sees me next week wants to talk about what to do next. (I know he mentioned a while back that they do use Imuran sometimes for AIH.) I also plan to ask him about testing free thyroid numbers to make sure everything is okay there, since my PCP never got back to me. In the meantime I'm still on 15mg of Prednisone, and my body is pretty darn exhausted.

Okay, back to get ready for work and a quick nap... Happy New Year's, too!


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## Andros (Aug 26, 2009)

bigfoot said:


> Quick check-in; been gone from the boards as we took a quick vacation and I started a new job (swing shift) this week. Between work and sleep I've had a few minutes to eat and that's been about it, LOL. Unfortunately my most recent liver labs went the wrong direction, so the gastroenterologist who sees me next week wants to talk about what to do next. (I know he mentioned a while back that they do use Imuran sometimes for AIH.) I also plan to ask him about testing free thyroid numbers to make sure everything is okay there, since my PCP never got back to me. In the meantime I'm still on 15mg of Prednisone, and my body is pretty darn exhausted.
> 
> Okay, back to get ready for work and a quick nap... Happy New Year's, too!


And a Happy New Year to you as well. You "deserve" one!


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## daisydaisy (May 12, 2010)

the .15 tsh u had what did the doctor say. do they consider that hyper and if your hash hit at .15 would you be even more hyper???


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## bigfoot (May 13, 2011)

DaisyDaisy: Yes, they considered the TSH of 0.15 hyper, and my Free T4 was something like 1.85, which is pretty darn hyper, too. Needless to say, I was *definitely* feeling it!

Just got back from my gastroenterologist appt. Apparently I have a mild, but symptomatic, case of Auto Immune Hepatitis (AIH). He's putting me on Imuran (another immune system suppressant) now and we will taper off the prednisone slowly over the next couple of months. Sounds like the Imuran takes a very long time to take hold, but its side effects are far milder. Might be on it for 2-3 years, it just depends. There is about an 80% chance that it will work. *crossing fingers*

It's funny how everything comes together. If I had not been persistent about getting checked, then a doc having found the Hashi's, I wouldn't have gone to the endo who referred me to the gastro doc who discovered the AIH. I swear, everything happens for a reason! 

In the meantime I will be changing PCPs as soon as I discover what our new insurance will cover. And a follow-up to the endo is in mid-February. Can't wait to see how the thyroid stuff is doing.


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## Andros (Aug 26, 2009)

bigfoot said:


> DaisyDaisy: Yes, they considered the TSH of 0.15 hyper, and my Free T4 was something like 1.85, which is pretty darn hyper, too. Needless to say, I was *definitely* feeling it!
> 
> Just got back from my gastroenterologist appt. Apparently I have a mild, but symptomatic, case of Auto Immune Hepatitis (AIH). He's putting me on Imuran (another immune system suppressant) now and we will taper off the prednisone slowly over the next couple of months. Sounds like the Imuran takes a very long time to take hold, but its side effects are far milder. Might be on it for 2-3 years, it just depends. There is about an 80% chance that it will work. *crossing fingers*
> 
> ...


Well..................that's bad news and good news. The good news being that there is a med that can help control this and allow you to feel better.

Have you started the Imuran yet? Keep us posted and meanwhile, keeping fingers crossed for you!


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## bigfoot (May 13, 2011)

Yup, started the Imuran a couple of days ago. Can't say I've noticed anything, but it will take months to start working. It does give a slight upset stomach, though.


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## Andros (Aug 26, 2009)

bigfoot said:


> Yup, started the Imuran a couple of days ago. Can't say I've noticed anything, but it will take months to start working. It does give a slight upset stomach, though.


Always a trade-off;isn't it. Hope the tummy troubles are not too bad and that you can tolerate this med so you feel better.

Did doc say about how long it might take until your liver is in the clear? How often do you have to have labs done?


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## bigfoot (May 13, 2011)

The Imuran has about an 80% success rate. Sounds like I take it for 2-3 years, then we stop it and see how the liver does. At that point if the AIH doesn't vanish we're kind of stuck. I'm supposed to get labs roughly every 2-3 weeks over the next year. Whee! My favorite activity... :tongue0013:


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## Andros (Aug 26, 2009)

bigfoot said:


> The Imuran has about an 80% success rate. Sounds like I take it for 2-3 years, then we stop it and see how the liver does. At that point if the AIH doesn't vanish we're kind of stuck. I'm supposed to get labs roughly every 2-3 weeks over the next year. Whee! My favorite activity... :tongue0013:


Wow!!! I hope and pray you are in the 80% group. It would appear that you have an awesome doctor and that he/she is on top of this.

That's a lot of blood letting. Good grief. Just stay hyrdrated and you will be fine with the blood draws.

How is the thyroid stuff doing?


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## bigfoot (May 13, 2011)

I would venture to guess that the prednisone has monkeyed with the thyroid or my adrenals at this point. I've been taking it for six weeks now. I literally feel drained, despite getting more sleep than I used to. Of course, that could be from the AIH or drug side-effects, too. Heck, probably from all of the above! I asked my gastro doc to test the thyroid just to be sure, but he didn't want to and deferred to my PCP. What is it with these doctors? They really don't want to step on each others' toes. But you are right, the gastro doc is excellent and very much on top of things.


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## Andros (Aug 26, 2009)

bigfoot said:


> I would venture to guess that the prednisone has monkeyed with the thyroid or my adrenals at this point. I've been taking it for six weeks now. I literally feel drained, despite getting more sleep than I used to. Of course, that could be from the AIH or drug side-effects, too. Heck, probably from all of the above! I asked my gastro doc to test the thyroid just to be sure, but he didn't want to and deferred to my PCP. What is it with these doctors? They really don't want to step on each others' toes. But you are right, the gastro doc is excellent and very much on top of things.


Wait a tick! Are you on the Imuran and the Prednisone concurrently? Is that not too much depression of your immune system?

Tell me it isn't so!

Worried here.


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## bigfoot (May 13, 2011)

Yup, on both the Imuran (50mg) and Prednisone (15mg) at the moment. Probably not the best for my immune system, but I do have some trust in this gastroenterologist. He's pretty methodical and careful. Still, like you are saying, nothing is guaranteed. I have been trying to constantly wash my hands, use hand sanitizer, wipe down my computer at work, etc. Unfortunately it seems like everybody is sick there. Hopefully I can wean off the Prednisone soon...


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## bigfoot (May 13, 2011)

So, I just heard back from my gastroenterologist yesterday. My liver numbers are finally starting to come back down; ALT of 47 (10-35) and AST of 24 (14-50). I may be wrong, but I believe these are the lowest they have been in years. As a comparison, before I started the chemo a few years ago, these numbers were up in the 400s. So we are making a little progress!

I asked about the Prednisone and the nurse asked the gastro doc. He feels some of my symptoms & side effects are from that, so he's dropping me down from 15mg of Pred to 10mg. I asked about taking it slowly, so I'm gonna do it in 2.5mg increments to avoid how I felt when dropping from 20mg to 15mg.

Thyroid labs, CBC, and CMP were drawn, too. Unfortunately I don't have the results of those yet. I see my PCP on Monday morning and will get a copy. This same PCP continually claims to not have any notes from the gastroenterologist, when in fact he sends them over promptly with a CC. Needless to say, he's nice doc, but overwhelmed with patients I think. On my short list...


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## Andros (Aug 26, 2009)

bigfoot said:


> So, I just heard back from my gastroenterologist yesterday. My liver numbers are finally starting to come back down; ALT of 47 (10-35) and AST of 24 (14-50). I may be wrong, but I believe these are the lowest they have been in years. As a comparison, before I started the chemo a few years ago, these numbers were up in the 400s. So we are making a little progress!
> 
> I asked about the Prednisone and the nurse asked the gastro doc. He feels some of my symptoms & side effects are from that, so he's dropping me down from 15mg of Pred to 10mg. I asked about taking it slowly, so I'm gonna do it in 2.5mg increments to avoid how I felt when dropping from 20mg to 15mg.
> 
> Thyroid labs, CBC, and CMP were drawn, too. Unfortunately I don't have the results of those yet. I see my PCP on Monday morning and will get a copy. This same PCP continually claims to not have any notes from the gastroenterologist, when in fact he sends them over promptly with a CC. Needless to say, he's nice doc, but overwhelmed with patients I think. On my short list...


What wonderful wonderful news about the numbers coming down!! Yay! For all your suffering on the Pred, in hindsight if the protocul is working, so be it. What a blessing.

Very good to hear from you! Hope the job is going exceedingly well for you!


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## bigfoot (May 13, 2011)

Thanks -- and yes, keeping plenty busy with work!


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## bigfoot (May 13, 2011)

OK -- I am back from the PCP with copies of labs. This is from being on 88mcg Levoxyl continuously since 10/1/11, as well as the Prednisone and Imuran treatment recently (note different lab ranges). I am throwing in my other most recent thyroid labs for comparison.

*1/25/12:*
TSH 1.255 (0.3-4.0)
FT4 1.52 (0.84-1.51)

*11/7/11:*
TSH 2.31 (0.34-4.82)
FT4 0.97 (0.47-1.23)

Needless to say, I am a bit surprised. My PCP feels the FT4 is now a bit high, and I am possibly being over-medicated with slightly too much Levoxyl. He wrote me an RX for 75mcg and we debated about whether to drop down now, or wait a bit and see what the numbers are like in a month. I see the endocrinologist in a couple of weeks and could always run things by him in the meantime. Something else odd -- I have lost 4-5 pounds in the last couple of months, literally doing practically no exercise (versus walking 1-3 miles a day every day and losing none). I thought the Prednisone and an increased appetite would have taken it the other direction.

There are a few explanations I can come up with while brainstorming:
- My liver health is improving, thus better use and conversion of thyroid hormones.
- The long-term use of 88mcg Levoxyl has allowed my body to adjust in the last 3 months.
- The Imuran and/or Prednisone is doing its job as an immuno-suppressant, thus reducing inflammation in the thyroid (and liver), allowing it to function better with whatever steam it has left.

So now I'm left wondering -- should I drop down to 75mcg and reduce my FT4 a bit (likely at the expense of an increasing TSH), or stick with 88mcg and see what happens?


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## chopper (Mar 4, 2007)

It looks like you are just about there. I wouldn't want to mess with it too much. If anything do something like 88 x 4 days and 75 x 3 days, alternating if you wanted to go through the trouble.


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## Enigma (Jun 13, 2011)

What about alternating days, 75 and 88 every other day, have labs checked, and then take the full step down to 75 if needed? Seems a bit smoother, especially since you are so sensitive to the meds and have other health issues (or at least symptoms) that may be exacerbated by an abrupt change.

I wouldn't worry about the TSH; it's just along for the ride and doesn't really make MUCH of a difference if your FT4 #s are off.

I wonder what your FT3 is? That would be very interesting since much of the conversion happens in the liver. Having that tested would show whether your T4 is building up with no where to go (not being converted) or conversion is good AND T4 is building up. I would insist on having this tested.

Also, I still recommend acupuncture. It has worked WONDERS for me. Really targets the underlying problems that cause thyroid issues. I think you would really benefit from this. I cannot emphasize that enough.

EDIT: BTW, How do you FEEL? Do you feel hyper? You have been hyper before, if I remember correctly? Do you feel like that again? If not, I'd personally go the alternating days route. However, if you FEEL over-medicated you might want to drop down quicker.


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## chopper (Mar 4, 2007)

Great minds think alike, eh Enigma?


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## Andros (Aug 26, 2009)

bigfoot said:


> OK -- I am back from the PCP with copies of labs. This is from being on 88mcg Levoxyl continuously since 10/1/11, as well as the Prednisone and Imuran treatment recently (note different lab ranges). I am throwing in my other most recent thyroid labs for comparison.
> 
> *1/25/12:*
> TSH 1.255 (0.3-4.0)
> ...


How do you feel? If you feel better than you have in a long time and you also like the idea of shedding some pounds, I personally would not tamper with anything.

One reason why is it is waaaaaaaaaaaaaaaaaaaaaaaay too soon. You "just" got there. Plus, the FT4 fluctuates on an hourly basis. I am all for holding the horses.


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## bigfoot (May 13, 2011)

Thank you guys so much for the input -- it is greatly appreciated! This gives me an idea of where to head and things to ask for. (I still have that darn TSI in the back of my mind.) I think the suggestion of alternating 88mcg and 75mcg is an awesome idea. I am going to bring this up to the endo when I see him.

Funny you mentioned the FT3 -- my PCP didn't know what FT3 was. He said "FT4?" I said, "No, Free T3, the other thyroid hormone". He looked puzzled and wrote it on the lab slip, along with the usual TSH and FT4 for a month from now. In the past he always said no or told me to ask the endo (who doesn't see much in the Free #'s).

Yeah, I am hesitant to make any huge changes right now. It has taken sooo long just to get to this point with the labs. I still don't feel great, but things seem better than they were a month ago. There is the usual intermittent anxiety, "emo.", frequent urination, insomnia, stomach upset, night sweats, fatigue, memory problems, etc. (Some of this is probably from the other medical issues and RX side-effects.) Compared to when I was absolutely hyper (FT4 of 1.85) back in November, this is far, far milder. I suppose if it starts getting hairy I can back down on the Levoxyl. Downside is I was cleaning the whole house and walking twice a day when hyper. Now I am pretty much drained. Fingers are crossed that dropping the Prednisone down to 10mg helps a bit, too.

Oh, and yes, I need to look into the acupuncture -- thanks for reminding me. I hate needles, but hey, who cares, I'll be on my back, right? LOL


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## bigfoot (May 13, 2011)

And I don't know why I didn't think of this earlier...

I have been taking my Levoxyl at night right before bed for better absorption and effect. I wonder if switching it to the morning would be just enough of a drop in effectiveness to lower things a tiny bit, without having to change the dosage?

Hmm...


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## Andros (Aug 26, 2009)

bigfoot said:


> And I don't know why I didn't think of this earlier...
> 
> I have been taking my Levoxyl at night right before bed for better absorption and effect. I wonder if switching it to the morning would be just enough of a drop in effectiveness to lower things a tiny bit, without having to change the dosage?
> 
> Hmm...


That's a thought but but but!!! ROLF! "If" you are feeling well, don't you think you should stay the course?


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## bigfoot (May 13, 2011)

Well, as of yet I haven't changed a thing. Still taking my 88mcg Levoxyl at night. Seems like I have a little more energy than over the last month or two, and my wife says my color looks better. I wouldn't exactly say the skies opened up with rainbows and unicorns landed on the roof, but progress is progress. Just don't wanna jinx myself at this point yet, though...


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## Andros (Aug 26, 2009)

bigfoot said:


> Well, as of yet I haven't changed a thing. Still taking my 88mcg Levoxyl at night. Seems like I have a little more energy than over the last month or two, and my wife says my color looks better. I wouldn't exactly say the skies opened up with rainbows and unicorns landed on the roof, but progress is progress. Just don't wanna jinx myself at this point yet, though...


It is my belief that you have made a very wise decision. Let the body stabilize. It needs time for that.

*What, no rainbows or unicorns???* Wah!


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## bigfoot (May 13, 2011)

I spoke too soon... apparently there ARE rainbows and unicorns! LOL Thanks for the laugh Andros!

:tongue0013:


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## Andros (Aug 26, 2009)

bigfoot said:


> I spoke too soon... apparently there ARE rainbows and unicorns! LOL Thanks for the laugh Andros!
> 
> :tongue0013:


Laughs are very important to recovery!


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## bigfoot (May 13, 2011)

Wordy update follows...

Saw the endocrinologist today for my 3-month follow-up. He asked how I have been feeling, how my temp was, checked reflexes, eyes, palpated the thyroid, and looked for hand tremors. I asked about the recent thyroid labs from Jan. that showed a tiny bit high on FT4, and a TSH in the 1.255 (0.3-4.0) area. He said the small overage in FT4 at 1.52 (0.84-1.51) wasn't really anything to be concerned about, and that my TSH level was fine provided I was happy with how I felt. So for right now we are holding steady at 88mcg of Levoxyl. He said the small nodules shown on the ultrasound in December weren't anything to be excited about, and that no biopsy was needed.

I said I had lost about 7-8 pounds over the last month or two without doing anything as far as exercise. He felt that the Wellbutrin might have had something to do with it. (Although most of us here probably figure that better thyroid health = better metabolism = weight control. Myself included.) I also said my memory seemed to be a little better; no theory there. And as far as feeling worse in the morning and better in the evening, no theory there, other than possibly the Prednisone wearing off.

The autoimmune hepatitis was a big surprise to him. His concern was the Prednisone I have been taking -- apparently at even a low dose (5mg) it can cause bone problems in as short as a few months! I think the sooner I can get off it, the better. For now it's a necessary part of treatment. He also said testosterone levels play a part in bone health. As far as Vitamin D, I have been taking 1,000-2,000 IU a day and he said it would be okay to even go up to 5,000 IU a day. Exercising regularly for bone strength, too, if possible. I also asked about taking Melatonin and if it would interfere with anything. He didn't seem to think so, and said it could potentially help with sleeping.

He is checking my PSA and Vitamin D levels in a month, along with some thyroid labs from my PCP and liver labs from the gastroenterologist. So between those three I should have a good indicator of progress. And I was able to convince him for a follow-up ultrasound in July. While I don't agree with him on things like the reluctance to use FT3/FT4 and other labs (TSI, etc.) for me, he does think of the big overall picture which is excellent. I guess you can't have it all!


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## bigfoot (May 13, 2011)

Well, I finally got my lab results back from last week's draw. Also saw the gastroenterologist yesterday. Things are looking better on the liver front; we are going to finish tapering down and off the Prednisone (woohoo!). The Imuran seems to be helping reduce the liver inflammation, and my protein levels are finally lowering, as are the ALT & AST.

Unfortunately, it looks like the lab ran a total T4 test instead of a Free T4. (But at least I was able to get a Free T3 in there.) And my Vitamin D level has come up a little; it was 25 just a couple of months ago. I have been taking an extra 1,000 IU for a total of 2,000 IU daily. Interesting to see the TSH yo-yo a bit versus the last couple of draws, and the T4 is a tiny bit elevated still.

Between work at the new job and sleep, I have been pretty much absent from around here. Hope everyone else is doing well!

*2/23/12:*
TSH 1.876 (0.3-4.0)
Free T3 3.7 (2.3-4.2)
T4 11.4 (4.5-10.9)
Vitamin D-25 Total: 32 (32-100)

1/25/12:
TSH 1.255 (0.3-4.0)
FT4 1.52 (0.84-1.51)

11/7/11:
TSH 2.31 (0.34-4.82)
FT4 0.97 (0.47-1.23)


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## Andros (Aug 26, 2009)

bigfoot said:


> Well, I finally got my lab results back from last week's draw. Also saw the gastroenterologist yesterday. Things are looking better on the liver front; we are going to finish tapering down and off the Prednisone (woohoo!). The Imuran seems to be helping reduce the liver inflammation, and my protein levels are finally lowering, as are the ALT & AST.
> 
> Unfortunately, it looks like the lab ran a total T4 test instead of a Free T4. (But at least I was able to get a Free T3 in there.) And my Vitamin D level has come up a little; it was 25 just a couple of months ago. I have been taking an extra 1,000 IU for a total of 2,000 IU daily. Interesting to see the TSH yo-yo a bit versus the last couple of draws, and the T4 is a tiny bit elevated still.
> 
> ...


Our only lament is that we have been missing you. Boy, what a wonderful report. I am so glad to hear the medical intervention was so successful! Yay!

What do you think about the FT3 and the TSH? Do you feel like there might be some room for tweaking? Like just a tiny bit? How do you feel; pretty good? 'Course in your case, it has not just been all about the thyroid. You have had multiple issues.


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## bigfoot (May 13, 2011)

Hi Andros (and everyone) -- thanks, miss you guys too!

I'm more or less happy with the numbers. Hopefully the TSH jumping from 1.25 to 1.87 over a month is due to my wacky sleep patterns (work swing shift), taking medicine at different times, and eating a little later at night. I need to try to minimize that and be consistent. I wouldn't mind seeing the TSH closer to 1.0 than 2.0, but I don't see how I can increase my Levoxyl without pushing the FT4 higher into hyper territory (since it was just over the threshold last month). As far as the FT3, I think that's in a good spot, about 3/4 of the range, right?

Overall, I am feeling *far* better than a few months ago. I would say that I'm "cautiously optimistic" (don't want to jinx myself, LOL).  Better appetite, better memory (although slipping a bit lately), more energy, weight loss, skin not as dry, fewer headaches, fewer dizzy episodes, increased libido, less "emo", normal resting pulse, less insomnia, etc. Still, it's hard to sort out what is from my body healing, what is from fewer side-effects of reduced prednisone, and which issues are still sticking around.

Funny story -- I was scoping out new PCP doctors recently (still searching) and one likes to do a "meet & greet" first before he takes you on as a patient, and you take him on as a doctor (which, BTW, is a freaking awesome idea). I asked him for his honest opinion, then I went through the whole litany of my medical issues over the last few years and he followed right along. Then I mentioned taking prednisone lately and he stopped fast. Right then and there he decided that was more than he could deal with, LOL.


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## Andros (Aug 26, 2009)

bigfoot said:


> Hi Andros (and everyone) -- thanks, miss you guys too!
> 
> I'm more or less happy with the numbers. Hopefully the TSH jumping from 1.25 to 1.87 over a month is due to my wacky sleep patterns (work swing shift), taking medicine at different times, and eating a little later at night. I need to try to minimize that and be consistent. I wouldn't mind seeing the TSH closer to 1.0 than 2.0, but I don't see how I can increase my Levoxyl without pushing the FT4 higher into hyper territory (since it was just over the threshold last month). As far as the FT3, I think that's in a good spot, about 3/4 of the range, right?
> 
> ...


Wow about the PCP putting on the breaks. At least he was upfront. If it were me, maybe get the FT3 about 3.9. Of course like all hormones, it does fluctuate.

And I do agree about your target for the TSH.


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## bigfoot (May 13, 2011)

Thanks Andros! Oh, the other thing I've seen mentioned is that prednisone can shut off or reduce TSH secretion if you're on it for an extended period. So that might be part of my problem, too.

I guess I'm kind of waiting to see how the removal of prednisone from my routine affects everything. Especially before making other changes if I can help it.

hugs3


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## Andros (Aug 26, 2009)

bigfoot said:


> Thanks Andros! Oh, the other thing I've seen mentioned is that prednisone can shut off or reduce TSH secretion if you're on it for an extended period. So that might be part of my problem, too.
> 
> I guess I'm kind of waiting to see how the removal of prednisone from my routine affects everything. Especially before making other changes if I can help it.
> 
> hugs3


Yes; one must be a good scientist and not throw too much into the pot all at one time.

What is the half-life of the pred?


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## bigfoot (May 13, 2011)

I've read that it takes about 2-3 hours once converted, and after that it sticks around for 18+ hours. This makes sense, as I feel far better late at night versus morning/afternoon following the early AM prednisone. By some accounts it can take weeks/months for your body to catch up after stopping the pred.


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## Andros (Aug 26, 2009)

bigfoot said:


> I've read that it takes about 2-3 hours once converted, and after that it sticks around for 18+ hours. This makes sense, as I feel far better late at night versus morning/afternoon following the early AM prednisone. By some accounts it can take weeks/months for your body to catch up after stopping the pred.


I hope you are a fast catcher-upper!!! And it is so good of you to drop in. You have been so motivational to others.


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## bigfoot (May 13, 2011)

Hope this update finds folks doing as well as possible and healing up. It's been about a month or so, and I just had another follow-up with my gastroenterologist. The liver labs are still looking good, nearly the same as last time, except I see my protein has creeped higher. The doc had me stop Prednisone almost a week ago and I am still feeling it, despite my slow and gradual taper. What really freaked me out was eye soreness / sensitivity to light the last couple of weeks. Hurt bad enough to go see an eye doc while we were out of town visiting relatives. Thankfully my eyes looked good to the eye doctor and there was no pressure measured or other abnormalities. He did mention that Prednisone can cause some swelling, etc.

So now enter more brain fog, memory probs, emo, fatigue, headaches, acne, dry skin, bloody nose, no energy, random nausea, achy joints, somewhat puffy face, and a stomach that alternates between diarrhea and constipation. Argh! The gastro doc did say it will take time for my adrenal glands to catch up; might be a month or more. I honestly think I felt a bit better and had more clarity on 7.5 or 5mg of Prednisone, but you can't take that stuff forever. (All of this makes me wonder if I have an underlying adrenal issue that is waiting to be addressed...)

As far as the thyroid goes, I have an appointment with my endocrinologist in a month and another ultrasound planned for early summer. Also want to look into my testosterone levels again and see about getting a saliva adrenal test.

Whee! LOL :tongue0013:


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## Andros (Aug 26, 2009)

bigfoot said:


> Hope this update finds folks doing as well as possible and healing up. It's been about a month or so, and I just had another follow-up with my gastroenterologist. The liver labs are still looking good, nearly the same as last time, except I see my protein has creeped higher. The doc had me stop Prednisone almost a week ago and I am still feeling it, despite my slow and gradual taper. What really freaked me out was eye soreness / sensitivity to light the last couple of weeks. Hurt bad enough to go see an eye doc while we were out of town visiting relatives. Thankfully my eyes looked good to the eye doctor and there was no pressure measured or other abnormalities. He did mention that Prednisone can cause some swelling, etc.
> 
> So now enter more brain fog, memory probs, emo, fatigue, headaches, acne, dry skin, bloody nose, no energy, random nausea, achy joints, somewhat puffy face, and a stomach that alternates between diarrhea and constipation. Argh! The gastro doc did say it will take time for my adrenal glands to catch up; might be a month or more. I honestly think I felt a bit better and had more clarity on 7.5 or 5mg of Prednisone, but you can't take that stuff forever. (All of this makes me wonder if I have an underlying adrenal issue that is waiting to be addressed...)
> 
> ...


If your TSI is high, you could be having eye involvement.

TSIs may also bind to other target components located in the tissues that surround the eyeballs and the tissues that lie directly beneath the surface of the skin. This may lead to the development of thyroid eye disease and pretibial myxedema associated with Graves' disease.
http://www.hopkinsmedicine.org/endocrine/graves/TopicAnswer.asp?QuestionID=22

Did you see an ophthalmologist?

Hopefully you will be able to share labs w/us when you get them for the thyroid, adrenals and testosterone? Hope you see some improvements in some of these 3 areas if not all of them.

Good to hear from you!


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## bigfoot (May 13, 2011)

Hi Andros! Yep, I sure did see an opthalmologist, so it was reassuring to know my eyes are doing okay. That was one of my concerns, too. I mentioned the thyroid, autoimmune, and prednisone stuff to him and he spent a lot of time looking in my eyes, dilating them, pressure test, vision test, et al. (Just as well, I was overdue!)

As luck would have it, I called to reschedule my endocrinologist appointment next month and wound up with a cancellation tomorrow instead. Guess he's all booked up...

More when I learn it, thanks!


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## Andros (Aug 26, 2009)

bigfoot said:


> Thanks Andros! Oh, the other thing I've seen mentioned is that prednisone can shut off or reduce TSH secretion if you're on it for an extended period. So that might be part of my problem, too.
> 
> I guess I'm kind of waiting to see how the removal of prednisone from my routine affects everything. Especially before making other changes if I can help it.
> 
> hugs3


What do you think the 1/2 life of Prednisone might be?


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## bigfoot (May 13, 2011)

The half-life of pred. is measured in hours and/or days, although I think recovering your adrenals from taking prednisone is a longer process. My gastroenterologist's comment about "taking a month or so" for your adrenals to catch-up seems to back this up.

Unfortunately for my endocrinologist, I am going to be peddling a lot of questions today when I see him:

*Adrenal testing / saliva cortisol 24-hr testing
*Cortef or Isocort if adrenals are tanked
*Testosterone levels
*TSH, FT4, FT3, Reverse T3 levels
*Binding, blocking, stimulating immunoglobulins
*Prednisone shuts off TSH secretion?
*High or low cortisol slows T4->T3 conversion
*Block & replace therapy
*Testosterone gel messing up adrenals?
*Consider trying small amount of T3 Cytomel in future, or Armour
*If FT4 is still slightly high, consider alternating 75 & 88mcg Levoxyl
*Supplement ideas (adrenal supps, thyroid supps, milk thistle for liver)
*Removal of thyroid possibility

My guess is I won't be getting too many answers, as he favors TSH monitoring, but I'm going to give it my best try. The fact that I had a few good days sprinkled here and there tells me we're in the right ballpark (autoimmune, male hormones, thyroid/adrenal, liver, vitamin D), but I want to get things dialed in.


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## bigfoot (May 13, 2011)

Well, I just got back from my visit to the endocrinologist. He drew TSH and testosterone levels. I asked about my adrenal glands and he felt there may be some adrenal insufficiency now due to the Prednisone taper. He said he frequently sees folks who have trouble with their taper and recommends dropping about 1mg drop / month. (I was going at _least_ twice as fast with mine.) According to him, the rule of thumb is roughly as much time for adrenals to recover as you were taking prednisone for. He thought it might take me up to six months to get back up to speed. Another suggestion he had was going back on prednisone to about 5mg and tapering back down s-l-o-w. But he asked me to check with my liver doc on this, though.

I asked about thyroid adjustments and Armour and he got pretty defensive, and rightfully so I can see why. (Really more about making adjustments than Armour itself.) My short trial last year with Cytomel did not go well for me, so he is very reluctant to make adjustments right now. Still, he's pretty open-minded and said trying Armour in the future is my choice, but to wait and see how other things play out first. Ultrasound will be in July to keep an eye on the nodules.

We're also going to see where my testosterone falls to see if bumping it up a notch might be in order. Also, there is a new 1.62% Androgel that is a little more consistent. Should know in about a week or so on this.

So... I don't agree with everything my endo does (or doesn't do), but he is knowledgable, cautious, and friendly. Far better than I can say about some other doctors!


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## Andros (Aug 26, 2009)

bigfoot said:


> The half-life of pred. is measured in hours and/or days, although I think recovering your adrenals from taking prednisone is a longer process. My gastroenterologist's comment about "taking a month or so" for your adrenals to catch-up seems to back this up.
> 
> Unfortunately for my endocrinologist, I am going to be peddling a lot of questions today when I see him:
> 
> ...


LHM!!! You have been busy doing your research and making a list! Good for you. When the going gets tough; the tough get going!! That's you to a T!!

He might kick you out! Yikes!!

You must let us know the outcome of this!


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## bigfoot (May 13, 2011)

Heh, thanks Andros! Naaah, I don't think he'll kick me out, LOL. I didn't even ask him all the questions I had written down. My wife saw my list and was like, "You had all of those questions?!" 

Today I have a little more energy and I just checked my temp and it's 99.0 (F). Maybe that's because we finally have a little sunshine today and I cheated with some coffee... besides, they say 2-3 cups of coffee is good for your liver. 

The "Armour" question for my endo was more of testing the waters. He's had folks on it before, says it works for some, and not for others. Same with Cytomel. Glad he didn't roll his eyes and snicker like the endo I saw a couple of times last year. I also did a little research and realized Googling things like "male hormone doctor" turns up a couple of potential hits for my area. My humble opinion is that this field is about to get big, especially with the vast numbers of baby boomers who questioned authority and want to stay active in retirement. There seem to be a lot of snake oil salesmen out there, but legit docs, too (especially naturopaths).

Anyhow, thanks for the kind words, I'll drop in once I have my lab results, and hope you're (and everyone) are doing well!


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## bigfoot (May 13, 2011)

Here are the latest labs from 4/13/12:

*TSH 1.00* (0.34-4.82)
*FT4 0.95* (0.47-1.23)
*Total Testosterone 689* (241-827)

Pretty happy my endocrinologist tested my FT4 without me asking, I thought he was only going to do TSH. Interesting that my FT4 has dropped somewhat versus a couple of months ago, although I am happy my TSH is now at 1.00 finally.


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## bigfoot (May 13, 2011)

Well, I'm pretty sure my adrenals gave out the other day. I woke up dizzy, spaced out, nervous, exhausted, and peeing constantly. Had to stay home from work which was frustrating since I'm still in training. Called the liver doc and left a message -- when his office called back they said he didn't see any connection between my medications and how I was feeling, and to see my PCP. So with that info I headed to the local urgent care and spent a few minutes chatting with a FNP who seemed to agree instead with the endo's point of view; that prednisone is nasty stuff and my body is probably still recovering after only two weeks of being off it. She then recommended seeing a neurologist for some of the brain fog & memory issues just to rule anything out, endo also suggested this a while back; that will be at the end of May.

In the meantime trying to rest up and drink my fluids. Picked up an adrenal herbal supplement (Gaia) yesterday and tried it out. Seems to help somewhat and it isn't loaded with lots of other stuff. Reviews on it seem very positive so I'm crossing my fingers. Wanted to skip over the adrenal glandulars so as to not put any more strain on the system.

More fun and learning...


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## Andros (Aug 26, 2009)

bigfoot said:


> Here are the latest labs from 4/13/12:
> 
> *TSH 1.00* (0.34-4.82)
> *FT4 0.95* (0.47-1.23)
> ...


Your FT4 may have dropped because it is in fact converting nicely to FT3. I sure hope that is so. Given that your TSH has come down nicely, I do believe that is what is taking place.

Missed this post; I am a week late and a dollar short.


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## Andros (Aug 26, 2009)

bigfoot said:


> Well, I'm pretty sure my adrenals gave out the other day. I woke up dizzy, spaced out, nervous, exhausted, and peeing constantly. Had to stay home from work which was frustrating since I'm still in training. Called the liver doc and left a message -- when his office called back they said he didn't see any connection between my medications and how I was feeling, and to see my PCP. So with that info I headed to the local urgent care and spent a few minutes chatting with a FNP who seemed to agree instead with the endo's point of view; that prednisone is nasty stuff and my body is probably still recovering after only two weeks of being off it. She then recommended seeing a neurologist for some of the brain fog & memory issues just to rule anything out, endo also suggested this a while back; that will be at the end of May.
> 
> In the meantime trying to rest up and drink my fluids. Picked up an adrenal herbal supplement (Gaia) yesterday and tried it out. Seems to help somewhat and it isn't loaded with lots of other stuff. Reviews on it seem very positive so I'm crossing my fingers. Wanted to skip over the adrenal glandulars so as to not put any more strain on the system.
> 
> More fun and learning...


You are sure you don't have hypoglycemia?

I am nominating you as our resident "expert" on adrenals and testosterone.


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## bigfoot (May 13, 2011)

When I check my blood sugar in the morning before meals, I'm around 90-105. Not optimal, but the endo isn't ready to call me diabetic. Last A1C was 5.5, down from 5.7. But you bring up an awesome idea; I think I will check my sugar throughout the day, especially between meals, just to see what it's doing.

Shucks, "expert" is a strong word, LOL. I'd prefer something like "guinea pig" or "trial and error". :tongue0013:


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## Andros (Aug 26, 2009)

bigfoot said:


> When I check my blood sugar in the morning before meals, I'm around 90-105. Not optimal, but the endo isn't ready to call me diabetic. Last A1C was 5.5, down from 5.7. But you bring up an awesome idea; I think I will check my sugar throughout the day, especially between meals, just to see what it's doing.
> 
> Shucks, "expert" is a strong word, LOL. I'd prefer something like "guinea pig" or "trial and error". :tongue0013:


ROLF!! Well, you are hanging on to that sense of humor!!!

Yes; do that because actually the symptoms sort of sounded suspiciously like hypoglycemia.

Will you let us know when you can?


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## bigfoot (May 13, 2011)

Well, I swear, things just keep getting stranger. Still haven't been feeling great but went to work this afternoon, sat down to start working and got really dizzy & lightheaded, thought I was going to pass out, with the usual brain fog thrown in. Luckily we have an urgent care across the parking lot so I was able to get looked at there. After explaining my litany of illnesses he wasn't sure what was going on, but he tested TSH, sodium and potassium levels, along with SED rate. He felt I probably had a lot of things going on, and since my ears are swollen perhaps allergies are working in hand with the autoimmune stuff. He also wasn't so sure that going off the prednisone didn't change my thyroid levels, and said what works for one person isn't the same thyroid level as for another (imagine that!). My BP was in the 150s and my pulse was in the 120s when I walked in their office. (This is different than home, where I've lately been in the BP 128/86 area with a pulse of 65-70.)

Another phone call to the gastroenterologist's office, who doesn't feel going off prednisone is culprit. Endocrinologist isn't so sure now, either, and has me coming in tomorrow for a morning cortisol test. In the meantime I think I found a new PCP who listens to patients and got squeezed in early next week. *fingers crossed*

Sheesh!


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## Andros (Aug 26, 2009)

bigfoot said:


> Well, I swear, things just keep getting stranger. Still haven't been feeling great but went to work this afternoon, sat down to start working and got really dizzy & lightheaded, thought I was going to pass out, with the usual brain fog thrown in. Luckily we have an urgent care across the parking lot so I was able to get looked at there. After explaining my litany of illnesses he wasn't sure what was going on, but he tested TSH, sodium and potassium levels, along with SED rate. He felt I probably had a lot of things going on, and since my ears are swollen perhaps allergies are working in hand with the autoimmune stuff. He also wasn't so sure that going off the prednisone didn't change my thyroid levels, and said what works for one person isn't the same thyroid level as for another (imagine that!). My BP was in the 150s and my pulse was in the 120s when I walked in their office. (This is different than home, where I've lately been in the BP 128/86 area with a pulse of 65-70.)
> 
> Another phone call to the gastroenterologist's office, who doesn't feel going off prednisone is culprit. Endocrinologist isn't so sure now, either, and has me coming in tomorrow for a morning cortisol test. In the meantime I think I found a new PCP who listens to patients and got squeezed in early next week. *fingers crossed*
> 
> Sheesh!


Oh, geez!! I am sorry to hear this. You really are struggling. The good news is that there was an urgent care conveniently located.

How are you feeling today?

Please let us know what the endo does and has to say!


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## bigfoot (May 13, 2011)

Brrrr... did somebody build an igloo in our house? LOL

Just went in for the lab draw at the endo's, hopefully I hear back from him and the urgent care doc today with results. Thanks for the well wishes! I'll keep ya' posted...


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## Andros (Aug 26, 2009)

bigfoot said:


> Brrrr... did somebody build an igloo in our house? LOL
> 
> Just went in for the lab draw at the endo's, hopefully I hear back from him and the urgent care doc today with results. Thanks for the well wishes! I'll keep ya' posted...


You sound really ill. I know we are all very concerned about our "Bigfoot" poster and friend.


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## bigfoot (May 13, 2011)

Just called the urgent care about my visit yesterday and got a few lab numbers over the phone (hard copies requested) -- now I'm _really_ perplexed:

*4/30/12:*
TSH 1.78
Potassium 3.8
Magnesium 2.4
SED Rate 1.0
CBC, etc. "Normal"

I expected something to be at least a little out of whack. Instead, on paper, I appear to be more-or-less completely fine. Now I'm just waiting on the results of the cortisol test from this morning. If those come back okay then I will really be scratching my head.

And thanks for the positive thoughts! We went and got some soup so that helps, too. arty0045:


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## Andros (Aug 26, 2009)

bigfoot said:


> Just called the urgent care about my visit yesterday and got a few lab numbers over the phone (hard copies requested) -- now I'm _really_ perplexed:
> 
> *4/30/12:*
> TSH 1.78
> ...


Soup always helps. I "love" soup!!

I guess you would not have the ranges for the electrolytes?


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## bigfoot (May 13, 2011)

Not yet, but they should be sending me copies of the labs. Talked to the endo's office today -- they are still waiting on the cortisol test results. Hopefully I have more news tomorrow...

arty0016:


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## Andros (Aug 26, 2009)

bigfoot said:


> Not yet, but they should be sending me copies of the labs. Talked to the endo's office today -- they are still waiting on the cortisol test results. Hopefully I have more news tomorrow...
> 
> arty0016:


Good deal; will be looking forward to your post. In the meantime, I hope you do not have any more "incidents."

Have you tried mini-meals to stabilize your glucose?


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## bigfoot (May 13, 2011)

Still no news yet on the cortisol labs from the endo. But I did find out about a naturopath nearby whom an acquaintance is seeing for thyroid & adrenal issues. I managed to get an appointment next Monday with her, as well as a new PCP appointment on Tuesday.

In the meantime my ears are still plugged and a bit sore, I wonder if I have some sort of sinus thing setting in. And the fatigue, weakness, and nasty brain fog is still persistent, unfortunately. Climbing our stairs was like going up the Matterhorn today, LOL. :tongue0013:


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## Andros (Aug 26, 2009)

bigfoot said:


> Still no news yet on the cortisol labs from the endo. But I did find out about a naturopath nearby whom an acquaintance is seeing for thyroid & adrenal issues. I managed to get an appointment next Monday with her, as well as a new PCP appointment on Tuesday.
> 
> In the meantime my ears are still plugged and a bit sore, I wonder if I have some sort of sinus thing setting in. And the fatigue, weakness, and nasty brain fog is still persistent, unfortunately. Climbing our stairs was like going up the Matterhorn today, LOL. :tongue0013:


You know what? I think you have made a good decision here. Now, I truly cannot wait for your appt. to take place Mon..

This is awesome.

I think you will like this NP stuff. They are usually up on everything and definitely think outside the box.


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## bigfoot (May 13, 2011)

Thanks Andros -- me, too! I also learned of yet *another* naturopath doc who is somewhat close that also has... wait for it... a Doctorate in both clinical pharmacology and naturopathy, and was a clinical pharmacy professor. He says he is the only one in the country with these credentials. (In case anyone else is reading this in the PNW and is interested in him: Link) I may also see if I can be seen by him, too. In the meantime, urgent care set me up with a steroid nasal spray in addition to the Zyrtec to try and get my ears, etc. cleared out.

Ok-dokey, off to rest up and drink my fluids. Hope you all have a great weekend!

:anim_32:


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## Andros (Aug 26, 2009)

bigfoot said:


> Thanks Andros -- me, too! I also learned of yet *another* naturopath doc who is somewhat close that also has... wait for it... a Doctorate in both clinical pharmacology and naturopathy, and was a clinical pharmacy professor. He says he is the only one in the country with these credentials. (In case anyone else is reading this in the PNW and is interested in him: Link) I may also see if I can be seen by him, too. In the meantime, urgent care set me up with a steroid nasal spray in addition to the Zyrtec to try and get my ears, etc. cleared out.
> 
> Ok-dokey, off to rest up and drink my fluids. Hope you all have a great weekend!
> 
> :anim_32:


Glad you have another option as well. I have a feeling you won't need it. I did go to the link. I am in to that stuff big time! That and attitude!


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## bigfoot (May 13, 2011)

Well, so far so good. Saw the naturopath doc this morning and I literally spent over _two hours_ with her. Much of that was detailing the last four years of illness, and that was the abbreviated version, LOL. She asked lots of questions, as did I, and I think we're on the same page. She doesn't want to add any supplements or things that are going to rock the boat, but she wants to investigate any missing minerals & nutrients, food allergies or other allergies, etc.

In the meantime she has me adding CoQ10, more Vitamin D, and additional fish oil to my daily regime. She had some labs drawn in the office to check my minerals & nutrient levels, provided me with a take-home salivary adrenal and hormone testing kit, and asked if I'd be interested in an "ALCAT" test to see what my body's response to foods, additives, and chemicals is.

Her first concern was my adrenals, especially after years of being sick. She looked over my thyroid labs and thought they looked okay for now, and actually recommended against Armour due to her experience with Hashi's patients doing better on synthetics. She was surprised that when I added Cytomel last year that my endo didn't drop my Lexoxyl down a bit.

So, I should have some of these test results in a couple of weeks. Tomorrow it's off to the new PCP. She said if that didn't work out I should check out another doc she recommended who is an MD but very much into endocrine problems, hormones, etc. All in all, I'm seeing this naturopath route as adding to my stable of doctors and knowledge, not trying to replace them with a magic fix as I naively tried last year.


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## Andros (Aug 26, 2009)

bigfoot said:


> Well, so far so good. Saw the naturopath doc this morning and I literally spent over _two hours_ with her. Much of that was detailing the last four years of illness, and that was the abbreviated version, LOL. She asked lots of questions, as did I, and I think we're on the same page. She doesn't want to add any supplements or things that are going to rock the boat, but she wants to investigate any missing minerals & nutrients, food allergies or other allergies, etc.
> 
> In the meantime she has me adding CoQ10, more Vitamin D, and additional fish oil to my daily regime. She had some labs drawn in the office to check my minerals & nutrient levels, provided me with a take-home salivary adrenal and hormone testing kit, and asked if I'd be interested in an "ALCAT" test to see what my body's response to foods, additives, and chemicals is.
> 
> ...


I think this is a very positive meeting of the minds, don't you? Will be anxious for all your test results to come back.

Most hopeful!


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## bigfoot (May 13, 2011)

Got a call back from the endocrinologist's office today. My cortisol test finally came in, and apparently my adrenals are "functioning normally". I requested a paper copy of the labs be mailed to me, so it'll be interesting to see where they stand.

I saw the new PCP this morning. I think I overwhelmed her with everything I have going on. She's requesting prior records from my endocrinologist and gastroenterologist, and we will meet again at the end of the month. I asked her how she deals with thyroid testing and she said that TSH is an overall indicator, but for folks with known thyroid issues you want to test everything, T4, T3, etc. At the end of the appointment I added that if it seemed like my case was too much, to feel free and let me know, that I appreciated her honesty. Not sure she took this the right way, LOL.

So I guess I am mixed on this visit. I want to give her a chance, and I'm a complicated case, but she didn't seem very thrilled from the get-go (not that I can blame her). After all, first impressions are usually wrong. But I did also locate the doctor recommended by my naturopath who specializes in thyroid and hormone issues. In the process of filling out a mountain of paperwork for him just to get an appointment where I'm hoping he can at least take a look at everything -- I think he's in high demand. (If anybody's curious, his web page is here.)

Oh, and some updates on those labs drawn the other day:

*4/30/12*
C Reactive Protein 2.0 mg/L (<0.7 - 15) Mine falls in the 2.0-3.8 category of "average".
Sed Rate 1.0 mm/hr (0-15)


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## bigfoot (May 13, 2011)

Andros said:


> I think this is a very positive meeting of the minds, don't you? Will be anxious for all your test results to come back.
> 
> Most hopeful!


Yes, me too! I feel like we are making some progress and moving towards solutions. Glad the naturopath is testing things *first* before any changes, and is conservative in not wanting to potentially worsen things just to sell supplements.


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## bigfoot (May 13, 2011)

Got the cortisol lab paperwork in the mail from the endo. Interestingly, my cortisol level was on the high end. According to the naturopath, a blood cortisol isn't as accurate as the saliva variety, and even just waiting to get stuck with a needle can raise your cortisol level. I'm hoping to do the saliva version this weekend. In the meantime a co-worker brought up the suggestion of BPPV, or "Benign Paroxysmal Positional Vertigo". I see it is also can be somewhat tied into Meniere's Disease (which is autoimmune itself) in that it involves the ears: Link

*5/1/12*
Fasting 8 AM Cortisol 20.9 (3.1-22.4)


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## Andros (Aug 26, 2009)

bigfoot said:


> Got the cortisol lab paperwork in the mail from the endo. Interestingly, my cortisol level was on the high end. According to the naturopath, a blood cortisol isn't as accurate as the saliva variety, and even just waiting to get stuck with a needle can raise your cortisol level. I'm hoping to do the saliva version this weekend. In the meantime a co-worker brought up the suggestion of BPPV, or "Benign Paroxysmal Positional Vertigo". I see it is also can be somewhat tied into Meniere's Disease (which is autoimmune itself) in that it involves the ears: Link
> 
> *5/1/12*
> Fasting 8 AM Cortisol 20.9 (3.1-22.4)


Interesting about the Cortisol! How long for the results of the saliva version?

Did you ever have whiplash or any other injury to the neck? Impingment of the Atlas Vertebrae and some others can also cause this same symptom of vertigo. Just wondered.


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## bigfoot (May 13, 2011)

Andros said:


> Interesting about the Cortisol! How long for the results of the saliva version?
> 
> Did you ever have whiplash or any other injury to the neck? Impingment of the Atlas Vertebrae and some others can also cause this same symptom of vertigo. Just wondered.


Nope, no whiplash or anything that I'm aware of. The saliva cortisol results should take about 2 weeks I believe. It's the "Adrenal Stress Index Panel" through DiagnosTechs; it includes Cortisol x 4, DHEA, Fasting & Non Fasting Insulin, MB2-S, FI-4, & P17-OH. Their web page is here.


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## bigfoot (May 13, 2011)

Phew, what a few days. The brain fog and fatigue has been out of this world lately. Sooo spaced out and exhausted. Had to miss another day of work yesterday. I can only imagine that the various autoimmune diseases cost billions a year in lost wages and productivity.

Interestingly, although I wasn't feeling good before, we made homemade pizza using store-bought ready dough over the weekend. Whatever the heck was in that made both of us sick almost immediately, and seemingly flared things up for me. (Of course, that could just be my imagination, too.) So I have decided to embark on the gluten free quest. Hello rice, potatoes, steel-cut oatmeal, and corn tortillas. Worst-case scenario: nothing happens. Best-case scenario: it helps somehow with an unknown gluten sensitivity. (The Celiac Disease test I had done late last year came back negative.)

The doctor I was trying to get in to see for a consultation has apparently shuttered his practice. Instead his office recommended another doctor who looks to have some expertise in the thyroid & hormone area: link. Fingers are crossed she accepts me as a new patient.


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## chopper (Mar 4, 2007)

SOYBEAN OIL!!! My local pizza place does the same exact thing to me. Took me 4 months to figure it out before I decided to look online for their ingredients and turns out the dough and sausage was LOADED with soybean oil and soy protein. for me, that stats a firestorm as well. I could never understand why I felt like **** after eating pizza. I switched pizza places to a place that uses real dough, real olive oil and real tomato sauce and I have no problems at all - it was the friggin pizza and the soybean oil. I am sure of it in my case at least.


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## Andros (Aug 26, 2009)

bigfoot said:


> Nope, no whiplash or anything that I'm aware of. The saliva cortisol results should take about 2 weeks I believe. It's the "Adrenal Stress Index Panel" through DiagnosTechs; it includes Cortisol x 4, DHEA, Fasting & Non Fasting Insulin, MB2-S, FI-4, & P17-OH. Their web page is here.


How interesting. I don't know a whole lot about the adrenals so I have bookmarked that link and while I did peruse it, I plan on "really" reading it in the next day or two.

Have you been feeling better, I hope?


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## Andros (Aug 26, 2009)

bigfoot said:


> Phew, what a few days. The brain fog and fatigue has been out of this world lately. Sooo spaced out and exhausted. Had to miss another day of work yesterday. I can only imagine that the various autoimmune diseases cost billions a year in lost wages and productivity.
> 
> Interestingly, although I wasn't feeling good before, we made homemade pizza using store-bought ready dough over the weekend. Whatever the heck was in that made both of us sick almost immediately, and seemingly flared things up for me. (Of course, that could just be my imagination, too.) So I have decided to embark on the gluten free quest. Hello rice, potatoes, steel-cut oatmeal, and corn tortillas. Worst-case scenario: nothing happens. Best-case scenario: it helps somehow with an unknown gluten sensitivity. (The Celiac Disease test I had done late last year came back negative.)
> 
> The doctor I was trying to get in to see for a consultation has apparently shuttered his practice. Instead his office recommended another doctor who looks to have some expertise in the thyroid & hormone area: link. Fingers are crossed she accepts me as a new patient.


Oh, no about the doc and oh, no about the gluten possibility BUT.............I have been gluten free for years and years (so has hubby); we eat well and don't miss a thing.

Get your some Thai Rice noodles too. And start being adventuresome with different rices. We like the Jasmine, Basmati and brown of course. We only eat steel cut oats. There are lots of different potatoes out there to try too. We eat lots of potatoes.

Read your labels; they put gluten in sour cream, yogurt and a bunch of stuff.

Here are different names for glutens.

http://gluten.lovetoknow.com/Other_Names_for_Gluten

It is my theory that so many are becoming gluten intolerant due to genetic engineering.


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## bigfoot (May 13, 2011)

Andros said:


> It is my theory that so many are becoming gluten intolerant due to genetic engineering.


I think you are so right! If anything, while I have been miserable for much of the last four years, it has been an eye-opening experience. Especially from the nutrition angle and taking care of yourself. We never really ate "bad", but I wouldn't always call it "good", either. And yes, the Jasmine rice is awesome. I'm pretty lucky in that half the family is Filipino, so making stir fry and using rice noodles isn't too intimidating. 

After watching "Super Size Me" and "Food Inc." it's pretty startling how much of our food is not healthy for us. All in the name of quantity and GMO cheapness over quality. Seems like more and more products in the mainstream grocery stores and restaurants are turning up as gluten free, too. There has to be a reason behind all of this. I see it as similar to the drug companies advertising. When I was a kid I remember seeing things change to drug commercials, magazine spreads, and now they are on the side of buses. Okay, tinfoil hat off now, LOL.

Guess what? Chex cereal is gluten-free! I was pretty excited when I found this out yesterday and made a quick trip to the store. Thanks for the link to the list, too.


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## bigfoot (May 13, 2011)

nasdaqphil said:


> SOYBEAN OIL!!! My local pizza place does the same exact thing to me. Took me 4 months to figure it out before I decided to look online for their ingredients and turns out the dough and sausage was LOADED with soybean oil and soy protein. for me, that stats a firestorm as well. I could never understand why I felt like **** after eating pizza. I switched pizza places to a place that uses real dough, real olive oil and real tomato sauce and I have no problems at all - it was the friggin pizza and the soybean oil. I am sure of it in my case at least.


Hmm... you might be right. Thanks Phil! I wish I had kept the baggie from the pizza dough. This was the refrigerated kind you find at Trader Joe's, take home, roll out, and bake. It really is nuts how many things are full of soy and gluten as fillers or cheap ingredients. I will have to look at it again next time I'm in the store. I don't think we'll be using it again, though!


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## bigfoot (May 13, 2011)

Yesterday was the first day going totally gluten free. Of course, there just had to be doughnuts and leftover cake at work.

 It was SO hard to just walk by! :sad0049:


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## Andros (Aug 26, 2009)

bigfoot said:


> I think you are so right! If anything, while I have been miserable for much of the last four years, it has been an eye-opening experience. Especially from the nutrition angle and taking care of yourself. We never really ate "bad", but I wouldn't always call it "good", either. And yes, the Jasmine rice is awesome. I'm pretty lucky in that half the family is Filipino, so making stir fry and using rice noodles isn't too intimidating.
> 
> After watching "Super Size Me" and "Food Inc." it's pretty startling how much of our food is not healthy for us. All in the name of quantity and GMO cheapness over quality. Seems like more and more products in the mainstream grocery stores and restaurants are turning up as gluten free, too. There has to be a reason behind all of this. I see it as similar to the drug companies advertising. When I was a kid I remember seeing things change to drug commercials, magazine spreads, and now they are on the side of buses. Okay, tinfoil hat off now, LOL.
> 
> Guess what? Chex cereal is gluten-free! I was pretty excited when I found this out yesterday and made a quick trip to the store. Thanks for the link to the list, too.


Yes; we like the Rice Chex cinnamon as a nice little snack once in a while. Just eat it dry like popcorn. And we love popcorn popped in olive oil w/tumeric and chipotle powder sprinkled on! Yum!!

Aaaaaaaaaaaaaaaaaaaaaaaaah; how lucky for you to have family who introduces a whole new world of ethnicity and culture to your world.

They put soy in everything and I deeply resent that. Very much so. Aspartame the same.

You are welcome and looking forward to some glueten-free tips from you that others here can take advantage of.


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## bigfoot (May 13, 2011)

Saw the neurologist this morning... luckily he was able to review the pituitary MRI I had done last year right on his computer, since it included a full MRI of my head/brain. Did a bunch of physical tests in the office like reflexes, pain, checking for nystagmus, memory questions, etc. (He was surprised to hear that I lost weight on prednisone and had the neuropathy issues.) He didn't seem to find anything today, though. He is sending me for an EEG next week and a consult at some point with what sounds like a neuropsychologist. Then I follow back up with him in about a month. (Ironically, his office also houses several rheumatologists. Don't know if that will be useful down the road or not.)

Spoke to the naturopath doc today and both my vitamin/mineral testing is back, as well as that adrenal saliva test. Will stop by tomorrow afternoon for the results from her. Curious what that info shows, especially since my recent blood cortisol was on the upper end of "normal".

And just to keep busy, a follow-up with the newer PCP this afternoon. Hopefully she has had time to review my past labs and charts from the endocrinologist and gastroenterologist. Still waiting to hear back on the other PCP in the area who specializes in aging/hormone/thyroid issues. She must have a really busy office!


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## Andros (Aug 26, 2009)

bigfoot said:


> Saw the neurologist this morning... luckily he was able to review the pituitary MRI I had done last year right on his computer, since it included a full MRI of my head/brain. Did a bunch of physical tests in the office like reflexes, pain, checking for nystagmus, memory questions, etc. (He was surprised to hear that I lost weight on prednisone and had the neuropathy issues.) He didn't seem to find anything today, though. He is sending me for an EEG next week and a consult at some point with what sounds like a neuropsychologist. Then I follow back up with him in about a month. (Ironically, his office also houses several rheumatologists. Don't know if that will be useful down the road or not.)
> 
> Spoke to the naturopath doc today and both my vitamin/mineral testing is back, as well as that adrenal saliva test. Will stop by tomorrow afternoon for the results from her. Curious what that info shows, especially since my recent blood cortisol was on the upper end of "normal".
> 
> And just to keep busy, a follow-up with the newer PCP this afternoon. Hopefully she has had time to review my past labs and charts from the endocrinologist and gastroenterologist. Still waiting to hear back on the other PCP in the area who specializes in aging/hormone/thyroid issues. She must have a really busy office!


Me too! Want to know what is what w/ the cortisol and the other stuff as well.

You have been busy!


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## bigfoot (May 13, 2011)

Well, the newer PCP is a nice lady and had time to review all of my labs, etc. Unfortunately, she doesn't have any new suggestions. She thought my latest thyroid and testosterone labs looked good, and that going gluten free was kind of the "in thing" right now. But she was all for it if it works for me. On the topic of steroid nasal spray, she said I could keep using that long-term. She wasn't against seeing a rheumatologist, either, especially with the joint aches.

I continue to tell the doctors that I feel there is something physical underlying all of this. As you all know that is a tough uphill battle met with skepticism. I can't wrap my mind around why using low-dose prednisone or a steroid nasal spray seems to help things. Same for the melatonin I took last night. I feel pretty decent today and have adequate energy.

Ok, off to enjoy the sunshine! More as I discover it...


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## Andros (Aug 26, 2009)

bigfoot said:


> Well, the newer PCP is a nice lady and had time to review all of my labs, etc. Unfortunately, she doesn't have any new suggestions. She thought my latest thyroid and testosterone labs looked good, and that going gluten free was kind of the "in thing" right now. But she was all for it if it works for me. On the topic of steroid nasal spray, she said I could keep using that long-term. She wasn't against seeing a rheumatologist, either, especially with the joint aches.
> 
> I continue to tell the doctors that I feel there is something physical underlying all of this. As you all know that is a tough uphill battle met with skepticism. I can't wrap my mind around why using low-dose prednisone or a steroid nasal spray seems to help things. Same for the melatonin I took last night. I feel pretty decent today and have adequate energy.
> 
> Ok, off to enjoy the sunshine! More as I discover it...


I think for now that a holding pattern will serve you well. It does take the body about 18 months to heal completely after such illness' which I consider to be trauma to the body, mind and soul.

Do what you are doing and don't change a thing "except" that I personally question the long-term use of steroids for any reason.

You may wish to peruse this article.

http://www.livestrong.com/article/74267-side-effects-nasal-steroid-spray/


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## bigfoot (May 13, 2011)

Happy to report that I just came from the naturopath doc's office... and with some good info, no less!

The saliva adrenal testing showed some interesting things; my cortisol levels are low in the AM, then rise around noon, continue rising until 4pm, then decrease towards midnight. As I had just come from my first week working night shift, the data may be somewhat skewed. (I did try to return to my normal schedule for a couple of days before taking the test.) Ultimately, it shows that my adrenals are working and putting out cortisol, and this backs up the blood test I had at 8am for cortisol.

So on one hand, I was a little disappointed that the adrenals are working, but glad that they are, even if they are somewhat off. (No such thing as one easy answer I guess.)

...On to the "good stuff"...

Other saliva testing showed: high DHEA, normal fasting and non-fasting Insulin levels, normal Progesterone, and borderline total salivary Secretory IgA (SIgA). Now for a biggie... _guess what?_ The Gliadin Ab test came back as "borderline". I am a stone's throw away (literally a U/ml) from having Gliadin intolerance, the cousin of Gluten: Interesting Link.

Now, for the second round of results, the functional blood testing for minerals and antioxidants: everything actually looked pretty good... _except for, surprise..._Vitamin B-12 deficiency.

And in further news -- I was finally able to get accepted as a new patient with the local MD who knows a thing or two about hormones and thyroid. Woohoo!

:anim_32:


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## bigfoot (May 13, 2011)

*5/15/12 Saliva Test Results:*

Free Cortisol and (Ranges)
0600-0800 3 nM Depressed (13-24 nM)
1100-1300 5 nM Normal (5-10 nM)
1600-1700 14 nM Elevated (3-8 nM)
2200-2400 6 Elevated (1-4 nM)
"Cortisol Load" 28 nM (23-42 nM)

DHEA + DHEA-S
Pooled Value 14 Elevated (3-10 ng/ml)

Insulin
Fasting 12 uIU/ml Normal (3-12 uIU/mL)
Non-Fasting 9 Normal (5-20 uIU/ml)

P17-OH Progesterone
Progesterone 29 pg/ml Normal (optimal 22-100, borderline 101-130, elevated >130 pg/ml)

Total Salivary SIgA
SIgA 20 mg/dl Borderline (normal 25-60, borderline 20-25 mg/dl)

Gliadin Ab, SIgA (Saliva)
Gliadin Ab 14 Borderline (borderline 13-15, positive >15 U/ml)


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## proud-armywife (Jul 29, 2011)

Bigfoot,
Not very knowledgeable in all of this but wanted to just let you know I have been following your post for weeks and hoping for you to get to the bottom of all of this. You are of great support to us all and I hate to think of any of us suffering. I hope you have found a road to recovery and I'll be praying for you!


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## bigfoot (May 13, 2011)

Thank you for the kind words! Likewise, I hope you discover what's going on and start feeling better soon. All of this is definitely a mind-body-spiritual challenge, and the folks here are so knowledgable and supportive.

hugs4


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## Andros (Aug 26, 2009)

bigfoot said:


> Happy to report that I just came from the naturopath doc's office... and with some good info, no less!
> 
> The saliva adrenal testing showed some interesting things; my cortisol levels are low in the AM, then rise around noon, continue rising until 4pm, then decrease towards midnight. As I had just come from my first week working night shift, the data may be somewhat skewed. (I did try to return to my normal schedule for a couple of days before taking the test.) Ultimately, it shows that my adrenals are working and putting out cortisol, and this backs up the blood test I had at 8am for cortisol.
> 
> ...


Good grief! What did the doc say about the Gliadin? You already are on a wheat gluten-free diet; correct?

B-12...................how about that? Not surprised as this seems part and parcel to autoimmune diseases. Did doc recommend shots or oral?

So............................glad you are getting in w/ a new MD. You have been hoping for this. Let us know all about it.

You are really having quite the adventure in that things keep turning up.

But........................overall; very very good news!


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## bigfoot (May 13, 2011)

Well, my naturopath was frankly a little surprised about the saliva test Gliadin sensitivity and the low B-12. So was I! I expected that being formally negative for Celiac disease meant I was able to continue with gluten to my heart's content. This put the brakes on that idea. The B-12 being functionally low was also interesting, as my last B-12 blood test showed me on the lower end but still within limits. And functionally my Vitamin D was above average. Shows you how much of a discrepancy there can be between "normal" range testing and functional testing.

So I am continuing to take my men's multivitamin, fish oil, CoQ10, vitamin D, and now some sublingual B-12 (better absorption).

Had my EEG at the neurologist's office this morning. Took a little scrubbing to get the goo out of my hair. Hope to hear results in a few days.


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## bigfoot (May 13, 2011)

Well, whatever is going on did not benefit from the coffee I had this morning, LOL. Got super anxious, along with plenty of brain fog and being emo, and had to use half a Xanax to take the edge off the anxiety. I hate using that stuff, and have probably touched it 4-5 times over the last six months.

If the EEG comes back weird then my first question to the neurologist is going to be about "Hashimoto's Encephalopathy". Many of my signs & symptoms seem to match up, and it sounds like it is very under- and mis-diagnosed. I noticed in my online chart he already has "unknown encephalopathy" down as a diagnosis code. My guess is this is more as a generic catch-all for billing than anything conclusive. Nonetheless, I have to wonder why low doses of prednisone seem to magically relieve many symptoms, and how having started back on nasal prednisone spray not only cleared out my ears, but gave me far more energy, better cognition, and improved memory, too.


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## Andros (Aug 26, 2009)

bigfoot said:


> Well, whatever is going on did not benefit from the coffee I had this morning, LOL. Got super anxious, along with plenty of brain fog and being emo, and had to use half a Xanax to take the edge off the anxiety. I hate using that stuff, and have probably touched it 4-5 times over the last six months.
> 
> If the EEG comes back weird then my first question to the neurologist is going to be about "Hashimoto's Encephalopathy". Many of my signs & symptoms seem to match up, and it sounds like it is very under- and mis-diagnosed. I noticed in my online chart he already has "unknown encephalopathy" down as a diagnosis code. My guess is this is more as a generic catch-all for billing than anything conclusive. Nonetheless, I have to wonder why low doses of prednisone seem to magically relieve many symptoms, and how having started back on nasal prednisone spray not only cleared out my ears, but gave me far more energy, better cognition, and improved memory, too.


Oh, boy......................I would hate to think that this has been the situation for all these months w/o a proper diagnosis. OMG!!

Have you been tested for these antibodies?

http://www.thyroidmanager.org/chapter/hashimotos-thyroiditis/#toc-hashimotos-encephalopathy

Yeah to the pred! That sort of "suggests" the diagnosis, doesn't it?

LHM! You have been through the wars w/all of this!


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## bigfoot (May 13, 2011)

Nope, those antibodies don't ring a bell. Yikes to testing spinal fluid, ouch. My very limited reading shows Hashimoto's Encephalopathy (aka "HE" or Steroid-responsive encephalopathy associated with autoimmune thyroiditis, "SREAT") apparently can present in roughly two types of groups. The first are those with rapidly developing stroke-like symptoms, while the the second is a more progressive, slow mental decline over a longer period of time.

I would definitely place myself in the second category, if that is even what is going on. But it is worth considering. I have a "laundry list" of things to consider at this point, in no particular order:

Reverse T3 ratio, Candida overgrowth, Gluten sensitivity (just learned of this one, guess I can cross it off), Lupus / SLE, Rheumatoid Arthritis, CFIDS, chronic fatigue syndrome, fibromyalgia, Meniere's disease, vertigo, dysautonomia, POTS (postural orthostatic tachycardia syndrome), encephalopathy, Lyme disease (tested negative 2008), hidden viruses or parasites, hidden infections, dopamine levels, fluctuating blood sugar (been pretty stable), elevated IL-1 & TNF levels (Wellbutrin acts to reduce TNF-a levels actually), adrenal issues, Hashitoxicosis.

I'm also not ruling out mental issues such as depression or anxiety, but as I keep telling the docs, there is something physical going on behind the scenes driving all of this. That statement usually falls on deaf ears, LOL.


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## miguel (Jul 18, 2011)

bigfoot said:


> Nope, those antibodies don't ring a bell. Yikes to testing spinal fluid, ouch. My very limited reading shows Hashimoto's Encephalopathy (aka "HE" or Steroid-responsive encephalopathy associated with autoimmune thyroiditis, "SREAT") apparently can present in roughly two types of groups. The first are those with rapidly developing stroke-like symptoms, while the the second is a more progressive, slow mental decline over a longer period of time.
> 
> I would definitely place myself in the second category, if that is even what is going on. But it is worth considering. I have a "laundry list" of things to consider at this point, in no particular order:
> 
> ...


It appears that you have had a lot of diseases, you need other alternatives.

Have you seen my board about stem cells?
http://www.thyroidboards.com/showthread.php?p=48585#post48585

Big Pharma is blocking the approbation of stem cells in the United States because it does not generate profits. A patient cured is a customer lost.


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## bigfoot (May 13, 2011)

Got a quick message from the neurologist; my EEG was "normal". And the doctor I keep trying to get in to see has pushed my appointment back for a 2nd time until next week. I get the impression that true MD's who are a little more 'alternative' are in high demand. *fingers crossed*

I absolutely agree regarding the medical community as well as drug companies. There is a huge capacity to help and positively influence peoples' lives in so many ways; but that has to be balanced against shareholders, leadership egos (both corporate and government), excessive and/or insufficient regulation, various lobbying groups, tax codes, insurance requirements, et al.

<off my soapbox>


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## bigfoot (May 13, 2011)

Okey-dokee, I had my appointment with the "alternative" MD office here. I didn't have a ton of time to convey my 4 1/2-year ordeal to the NP I saw, but gave her the abbreviated version. She wants to start from the basics and see what's going on here.

She stated that hormones probably have a lot to do with my situation, and that (as we here know, but mainstream docs ignore) the thyroid controls a lot of these various hormones. Once the thyroid is out of whack, everything else downstream follows suit, including testosterone, elevated triglycerides, et al.

I could have hugged this lady on the spot. Before I could even utter the words she was talking about testing things like Reverse T3, TBII, testosterone AND estrogen, etc. So we did those labs today and they said they'll let me know the results. In the meantime I left her with a mountain of previous labs and tests to look over. She also is leery of changing multiple things at once, which is refreshing. (She was also a little surprised at how *few* medications I was on, considering my various ailments, LOL.)

Two words: THANK GOD!


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## bigfoot (May 13, 2011)

Okay, well, had a follow-up with the NP at this new PCP's office yesterday. Unfortunately, she did not test TBII or estrogen. She did however test Reverse T3 and plenty of other things. Here's a few of the pertinent ones:

*6/11/12:*
Vitamin B12 1285 pg/ml (243-894)
Reverse T3 512 pg/mL (90-350)
TSH 2.38 iIU/ml (0.27-4.2)
Free T3 3.4 pg/ml (1.8-4.6)
Free T4 1.41 pg/ml (0.9-1.7)
Thyroid Peroxidase Abs 10.7 IU/ml (<35)
PSA Total 3.31 ng/ml (0.0-4.0)
Testosterone Total 625 ng/dl (280-1100)
SHBG 17 nmol/L (10-80)
Testosterone Free 25.74 ng/dl (1.9-2.7)

She said things looked pretty good, although my Reverse T3 was a little high. She is passing this along to their new MD who has lots of experience with treating thyroid problems, including compounding, etc. (See below, he has since recommended Naturethroid.) Also, my B-12 is now through the roof (been taking 2,500 of sublingual variety last few weeks). And my TPO Ab's are now very low compared to last year.

In looking at the numbers, and in my limited reading, I have read that the Reverse T3 to Free T3 ratio should be 20 or higher. In my case, 3400 FT3 / 512 Reverse T3 = 6.6 ratio. Between this crappy ratio and my FT4 and FT3 being in a good place, it seems as though I may have a lot of Reverse T3 blocking my receptors.

So it seems there are a few options out there. One is to correct the issues that are causing the bad Reverse T3 ratio to begin with. Another still advocates using a course T3 only to eliminate the Reverse T3 from your body, and another approach uses compounding to create at least a 80% T4/20% T3 mixture.

*URGENT: NEED YOUR TIPS OR OPINIONS HERE...*

*** And in fact, I just got a call from this doc's office. They are suggesting taking 1/4 grain (16.25mg) of Naturethroid ($12) in the AM (contains 9.5mcg T4 & 2.25mcg T3) in addition to my existing 88mcg Levoxyl. On top of this they are suggesting an adrenal support supplement twice a day and an adrenal energy tablet once a day. The doc's idea was that Naturethroid would be hypoallergenic due to my inflammation and any allergies, and absorb better than a compounded cream to be a more sustained dose. They also said that my adrenals appeared to be in "adrenal stress" mode.

I have not taken Naturethroid, and I do have a few concerns about taking it in conjunction with Levoxyl. I worry about combining using a synthetic hormone as well as a natural hormone. Also, the adrenal supplements worry me a bit because I got light-headed at work and a racing pulse when I took some a couple months ago. Anyone have any suggestions or questions I should be asking about this stuff? I am going to try to actually talk to the doc tomorrow by phone. Thanks in advance! ***


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## Andros (Aug 26, 2009)

bigfoot said:


> Okay, well, had a follow-up with the NP at this new PCP's office yesterday. Unfortunately, she did not test TBII or estrogen. She did however test Reverse T3 and plenty of other things. Here's a few of the pertinent ones:
> 
> *6/11/12:*
> Vitamin B12 1285 pg/ml (243-894)
> ...


True; your concern is valid. Synthetic and Natural don't mix very well. Sounds like this is an experiment at best.

You might find this interesting.

http://healthscopepathology.com.au/html/functionalPathology/rT3.shtml

It is my humble opinion that treating the adrenals would serve you well in the rT3 department.

And why does your doctor just not want to put you on Naturethroid?

PSA is getting up there and is that the right range for the testosterone?

Good to hear from you!


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## bigfoot (May 13, 2011)

Thanks Andros! Yes, the increasing PSA makes me a little wary. My endo happens to testing my PSA as well, so hopefully if it's a different week / different lab that will rule out any margin of error. Something to watch for sure.

As far as Nature-Throid, I am not sure why they are considering using Levoxyl AND Nature-Throid. Perhaps the front desk girl had things a little confused. I do need to get some clarification from the doc. I'd prefer to either be all on synthetics or else all on natural. I am a little worried about some people's experience with the natural products and Hashi's. Especially if it causes a big flare up like throwing gas on the fire. (But that might just be marketing.) And what is a good transition strategy for going from Levoxyl to Nature-Throid? Drop the Levoxyl every couple of weeks while upping the Nature-Throid a 1/4 grain? Or go cold turkey off Levoxyl and start Nature-Throid?

Or do you think I would be better served by first trying to add a small amount of Cytomel again to the existing Levoxyl 88mcg? The naturopath I saw a couple of weeks ago thought maybe even dropping the Levoxyl down and adding Cytomel might help. It's hard to know -- everyone is different, but there seems to be a lot of conflicting info out there, especially on dealing with Reverse T3.

So many questions... LOL Thanks for any insight!


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## Andros (Aug 26, 2009)

bigfoot said:


> Thanks Andros! Yes, the increasing PSA makes me a little wary. My endo happens to testing my PSA as well, so hopefully if it's a different week / different lab that will rule out any margin of error. Something to watch for sure.
> 
> As far as Nature-Throid, I am not sure why they are considering using Levoxyl AND Nature-Throid. Perhaps the front desk girl had things a little confused. I do need to get some clarification from the doc. I'd prefer to either be all on synthetics or else all on natural. I am a little worried about some people's experience with the natural products and Hashi's. Especially if it causes a big flare up like throwing gas on the fire. (But that might just be marketing.) And what is a good transition strategy for going from Levoxyl to Nature-Throid? Drop the Levoxyl every couple of weeks while upping the Nature-Throid a 1/4 grain? Or go cold turkey off Levoxyl and start Nature-Throid?
> 
> ...


Making a direct transition is the way to go. Just stop the Synthetic and go on the natural. Hopefully you will start on 1/2 grain and go through the normal titration protocul.

You could try the Cytomel and the Levoxyl as well but I do think that you would respond better to the dessicated thyroid. It would be kinder to your adrenals.


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## bigfoot (May 13, 2011)

I think that's what I will ask to do, then, the direct transition. And Nature-Throid is basically just Armour minus the fillers, right?

At this point going gluten free has been amazing. Three weeks in and feeling far better. I was even able to convince my dad to go GF -- it's only been a few days and he says it's great. It certainly has helped reduce my brain fog, no doubt about it.


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## bigfoot (May 13, 2011)

Seeing the new doc this practice hired who is supposed to be pretty knowledgable about thyroid issues. Wish me luck! hugs6


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## bigfoot (May 13, 2011)

Well, it was an interesting visit to say the least. This new doc in their office definitely seems to be clued into the subtleties of hormone issues, as well as anti-aging issues. He took one look at my adrenal saliva test from a month or so ago and immediately said I was in adrenal stress. He suggested I take an adrenal support formula (with adrenal tissue), a mixed tocopherol formula (Vitamin E + tocopherols), 1500mg of Vitamin C multiple times a day, along with Selenium.

He doesn't feel that my thyroid meds need to be changed at all, and if anything, I'm in a pretty good spot right now sans the Reverse T3. It sounds like strengthening the adrenals will help clear out some of that Reverse T3. In his words, "You've arrived". I mentioned my TPO Antibodies having dropped from 135 to 11 over the course of this last year and he felt that was from my targeted treatment of things.

We also had a brief discussion on how hypothyroidism is addressed nowadays, and how it used to be considered a fatal illness, not unlike cancer. And also that it would seem to be a precursor to things like heart problems, dementia, etc. down the road. This hits pretty close to home as I lost a grandfather to Alzheimer's and spent much of my adult life watching his health decline. This grandparent also had heart troubles later on. Coincidence? Who knows, we'll never probably know. (Ironically, he was one of the healthiest people I knew. Morning workouts, afternoon tennis, working part-time into his later years, good nutrition, plenty of travel, etc.)

So this doc thinks that within a few weeks I should be feeling much better with these additional changes. In fact, he only has me getting repeat thyroid labs in six months' time. *fingers crossed*


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## bigfoot (May 13, 2011)

Well, after a few days of taking the adrenal support supplement courtesy of the anti-aging MD, needless to say I felt awful. It was as if nearly all of my months of progress slipped backwards. Joint aches, muscle pains, brain fog, no stamina, headaches, no energy, etc. Even had to leave work early and miss another day due to how awful it was. I stopped taking the supplement with the doc's permission and within a couple of days things started to clear up.

So, on a hunch, I contacted the naturopath I have been seeing. When she saw my labs this morning she said mine was the highest Reverse T3 she has seen! She is pretty sure that what is going on is "Wilson's Temperature Syndrome" (aka euthyroid sick syndrome), based on my symptoms, labs, and body temperature (I knew keeping track of that daily would pay off at some point, LOL).

Apparently the treatment protocol involves stopping T4 medication for about 10 days, allowing the built-up Reverse T3 to start clearing naturally. Then a compounded slow-release T3 is taken, starting at something like 7.5mcg twice daily (12 hours apart), and then adding a bigger dose at certain intervals. All the while you must carefully watch your pulse, body temp, and see how you are feeling. Once the Reverse T3 is dealt with, you can focus on the long-term thyroid medication with T4 only, or a combo T4/T3 (insert drug of your choice).

So we begin yet another journey in the saga... now to go read my homework on this stuff.


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## Andros (Aug 26, 2009)

bigfoot said:


> Well, after a few days of taking the adrenal support supplement courtesy of the anti-aging MD, needless to say I felt awful. It was as if nearly all of my months of progress slipped backwards. Joint aches, muscle pains, brain fog, no stamina, headaches, no energy, etc. Even had to leave work early and miss another day due to how awful it was. I stopped taking the supplement with the doc's permission and within a couple of days things started to clear up.
> 
> So, on a hunch, I contacted the naturopath I have been seeing. When she saw my labs this morning she said mine was the highest Reverse T3 she has seen! She is pretty sure that what is going on is "Wilson's Temperature Syndrome" (aka euthyroid sick syndrome), based on my symptoms, labs, and body temperature (I knew keeping track of that daily would pay off at some point, LOL).
> 
> ...


I truly am sorry this happened to you but thank goodness you called your NP. It sounds to me like she knows what she is doing.

How long for the adrenal support to clear your system?


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## chopper (Mar 4, 2007)

bigfoot said:


> Well, after a few days of taking the adrenal support supplement courtesy of the anti-aging MD, needless to say I felt awful. It was as if nearly all of my months of progress slipped backwards. Joint aches, muscle pains, brain fog, no stamina, headaches, no energy, etc. Even had to leave work early and miss another day due to how awful it was. I stopped taking the supplement with the doc's permission and within a couple of days things started to clear up.
> 
> So, on a hunch, I contacted the naturopath I have been seeing. When she saw my labs this morning she said mine was the highest Reverse T3 she has seen! She is pretty sure that what is going on is "Wilson's Temperature Syndrome" (aka euthyroid sick syndrome), based on my symptoms, labs, and body temperature (I knew keeping track of that daily would pay off at some point, LOL).
> 
> ...


I swear I hate to be a downer but reading through the post I see someone searching for a magic pill and while its good to weigh all options, in the end there is NOTHING that will stop the antibodies except surgery and until the thyroid comes out, you may go into a remission for a little bit, you may feel well for a little bit - regardless, you'll never know if your thyroid is just taking a break from making you sick or if it is a new med combo making you feel well. Mentally, you will want to thank the new med combo, only to be let down eventually. I've seen it a thousand times here where someone tried a new combo or theory and felt great, touting the new combo, only to crash hard a few weeks later usually.

Again, its just my opinion and I know it is a pretty harsh opinion. I hate to see members spin their wheels and not get any better. Im not a doctor and I could be wrong. Everyone is different. I just wanted to give it to you straight as I see it, right or wrong so you are weighing your choices accordingly without false hope. Im not the kind of guy to sugar coat my thoughts to spare one's sense of hope if I feel he or she will be let down in the long run. As long as you have TSI and those other antibodies, the odds of finding long term wellness with meds is on the slim side. That's not to say you shouldn't keep searching. Just keep it in mind that if none of it works, there will come a time to say "enough with the med-cocktails" and you'll want to find a permanent fix so you don't waste any more time.


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## bigfoot (May 13, 2011)

Andros -- it should be cleared out by now. It certainly feels that way, at least.

Phil -- I totally agree, and I'm glad you're not sugar coating anything! Please don't, for my sake or anyone else's. My problem is there is no doctor who I've seen either for the thyroid (or something else), or has looked at my labs, ultrasound, or litany of complaints and said "let's take it out". On the contrary, all I get is "your labs look normal" and "see you in XYZ months". I have become a revolving door for doctors' boat payments and kids' college funds.

I have probably mentioned the TSI connection to at least 6 or 7 docs, and they all respond the same way; "doesn't apply to you, you're not hyperthyroid" or "levels are normal". In the back of my mind I still remember that I have all three antibodies (although TPO Ab has dropped like a rock lately). If there is ever a doc who is on board with removing it, well, I won't have to think very hard about it.

My goal is to try this Wilson's treatment and see what happens. Worst case scenario is things go to crap fast, best case is it actually accomplishes something. This ND has trained under his program and been to continuing education on it, successfully treated many others with it, etc. She has been very cautious so far and not wanting to rock the boat, and has spent hours (probably days for her) working on my case. My concern is with my adrenals being able to keep up, and she stated herself that she wouldn't have tried this when she first saw me.


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## chopper (Mar 4, 2007)

bigfoot said:


> Andros -- it should be cleared out by now. It certainly feels that way, at least.
> 
> Phil -- I totally agree, and I'm glad you're not sugar coating anything! Please don't, for my sake or anyone else's. My problem is there is no doctor who I've seen either for the thyroid (or something else), or has looked at my labs, ultrasound, or litany of complaints and said "let's take it out". On the contrary, all I get is "your labs look normal" and "see you in XYZ months". I have become a revolving door for doctors' boat payments and kids' college funds.
> 
> ...


Since I wrote an article about Hashitoxicosis, I've had about 12 or so people contact me - all of us with nearly identical symptoms and nearly identical labs and nearly identical blow offs from the doctors because our labs are "near normal".

Out of all those people I know of just 1 who was able to ride out Synthroid long enough, starting with just 12.5 mcg and very slowly working her way up before starting to feel better and help put the antibodies to rest. They never go away of course, but with enough replacement hormone, they do tend to slow down and not flare up as much. This particular person says she feels good now - much better than before taking Synthroid but it took her FOREVER to work her way up to a decent dose without feeling totally hyper. The rest of the people I spoke with - well, most had their thyroids removed already and now feel well. Some I have just never heard from again.

It's a tough call and Im right where you are at. Just this morning I had a round of heart palpitations followed by a burning sensation in my heart area. I thought I was a goner for a few seconds there. It sucks. Doctor says to take my Synthroid as instructed because I am clearly hypo, yet my hands are shaky and I get heart palps ALL the time but at the same time, Im exhausted all the time but also always have a high heart rate - around 96 - 102 BPM at rest. Go figure. I can't even fix myself so maybe I shouldn't be offering suggestion to anyone at all.


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## Andros (Aug 26, 2009)

nasdaqphil said:


> I swear I hate to be a downer but reading through the post I see someone searching for a magic pill and while its good to weigh all options, in the end there is NOTHING that will stop the antibodies except surgery and until the thyroid comes out, you may go into a remission for a little bit, you may feel well for a little bit - regardless, you'll never know if your thyroid is just taking a break from making you sick or if it is a new med combo making you feel well. Mentally, you will want to thank the new med combo, only to be let down eventually. I've seen it a thousand times here where someone tried a new combo or theory and felt great, touting the new combo, only to crash hard a few weeks later usually.
> 
> Again, its just my opinion and I know it is a pretty harsh opinion. I hate to see members spin their wheels and not get any better. Im not a doctor and I could be wrong. Everyone is different. I just wanted to give it to you straight as I see it, right or wrong so you are weighing your choices accordingly without false hope. Im not the kind of guy to sugar coat my thoughts to spare one's sense of hope if I feel he or she will be let down in the long run. As long as you have TSI and those other antibodies, the odds of finding long term wellness with meds is on the slim side. That's not to say you shouldn't keep searching. Just keep it in mind that if none of it works, there will come a time to say "enough with the med-cocktails" and you'll want to find a permanent fix so you don't waste any more time.


Pragmatic and true advice!!! If I had known, I would have had my thyroid gone a lot sooner instead of fooling around for a couple of years being sick the whole time!


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## jenny v (May 6, 2012)

> I swear I hate to be a downer but reading through the post I see someone searching for a magic pill and while its good to weigh all options, in the end there is NOTHING that will stop the antibodies except surgery and until the thyroid comes out, you may go into a remission for a little bit, you may feel well for a little bit - regardless, you'll never know if your thyroid is just taking a break from making you sick or if it is a new med combo making you feel well. Mentally, you will want to thank the new med combo, only to be let down eventually. I've seen it a thousand times here where someone tried a new combo or theory and felt great, touting the new combo, only to crash hard a few weeks later usually.


This is great advice and one of the reasons, after thorough research, I'm pushing to have my thyroid removed completely. After 5 years of doing exactly what the doctors told me to, changing medications/doses/lifestyle, hoping and praying each dose would be the "magic" one that would finally stabilize me, I'm done. I only have Hashimoto's and no nodules or tumors (that have been seen on one ultrasound) but the roller coaster of symptoms has worn me out and it's only getting worse as I get older.


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## Octavia (Aug 1, 2011)

jenny v said:


> This is great advice and one of the reasons, after thorough research, I'm pushing to have my thyroid removed completely. After 5 years of doing exactly what the doctors told me to, changing medications/doses/lifestyle, hoping and praying each dose would be the "magic" one that would finally stabilize me, I'm done. I only have Hashimoto's and no nodules or tumors (that have been seen on one ultrasound) but the roller coaster of symptoms has worn me out and it's only getting worse as I get older.


Jenny, did you have trouble "convincing" a doctor to remove your thyroid, or was the roller coaster and Hashi's diagnosis enough? (It seems as though some doctors want to see nodules crawling out of the neck themselves before they'll talk to a patient about surgery. Just curious.)


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## jenny v (May 6, 2012)

> Jenny, did you have trouble "convincing" a doctor to remove your thyroid, or was the roller coaster and Hashi's diagnosis enough? (It seems as though some doctors want to see nodules crawling out of the neck themselves before they'll talk to a patient about surgery. Just curious.)


 Octavia, so far my previous 2 endos have pretty much said I either need to tough it out or it's all in my head because my labs look "normal". They'll change the levels of my medication each time I see them based on my numbers fluctuating around, but that's it. I'm seeing a new endo on Friday and I'm hoping she will listen to me about the roller coaster and either recommend a new option or allow me to see a surgeon. I don't have any nodules, thank goodness, the whole thyroid is just swollen (the right side more than the left, though). I've had high antibody levels for 7 years now and I just feel like I've tried every medication option out there and nothing has ever worked for more than a few months, so surgery should be an option now. I'm tired of the ups and downs after 7 years!


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## Octavia (Aug 1, 2011)

jenny v said:


> Octavia, so far my previous 2 endos have pretty much said I either need to tough it out or it's all in my head because my labs look "normal". They'll change the levels of my medication each time I see them based on my numbers fluctuating around, but that's it. I'm seeing a new endo on Friday and I'm hoping she will listen to me about the roller coaster and either recommend a new option or allow me to see a surgeon. I don't have any nodules, thank goodness, the whole thyroid is just swollen (the right side more than the left, though). I've had high antibody levels for 7 years now and I just feel like I've tried every medication option out there and nothing has ever worked for more than a few months, so surgery should be an option now. I'm tired of the ups and downs after 7 years!


I understand. Not because I've been there, but because I've seen similar stories here.

Have you ever seen an ENT? They are one type of surgeon who does thyroidectomies, and I just wonder if an ENT would get past the nonsense and agree to surgery quicker, since it's what they do. Just a thought.

Keep us posted, will you? I'm very curious about where you'll be going from here.


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## bigfoot (May 13, 2011)

I hope this new endo works out for you and refers you to a surgeon. The ENT idea is a good one, too. The doctors (for the most part) fail to understand what years of symptoms and dealing with this stuff does to your life. But how could they when they only see you for 15 minutes every few months? But I digress...

This morning is 2.5 days in without Levoxyl. My body is definitely feeling it, I have far less energy than I did a few days ago, a little dizzy at times (adrenals probably trying to make up the difference), and I am pretty tired with restless sleep. I know the half-life of T4 is about a week, so I'm getting there.

The ND said a Reverse T3 problem can come on slowly, or be like throwing a switch. Much of it apparently has to do with stress and illness causing its onset. All of us here have at least a "little" of that in our lives!


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## Octavia (Aug 1, 2011)

bigfoot said:


> The doctors (for the most part) fail to understand what years of symptoms and dealing with this stuff does to your life. But how could they when they only see you for 15 minutes every few months?


I never thought about it like this...but I like what you've written! It makes all kinds of sense.


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## jenny v (May 6, 2012)

> The doctors (for the most part) fail to understand what years of symptoms and dealing with this stuff does to your life. But how could they when they only see you for 15 minutes every few months?


 It's so true and I also feel like many of them don't sympathize with a lot of the symptoms (like weight gain, brain fog, exhaustion, etc.) because they could easily be attributed to other things.

I actually saw an ENT a few weeks ago and he wanted me to start Prilosec for acid reflux symptoms (none of which I've ever felt) I was having from my thyroid pressing on my esophagus. I don't just want to throw another pill at a symptom my thyroid is causing, I want to fix the root cause of all of the symptoms! So frustrating.


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## bigfoot (May 13, 2011)

I think a couple of other things contributing to all of this is that most doctors don't have the time and/or inclination to keep up with the latest research and medical articles, and that most endocrinologists deal so heavily with diabetes, and not so much with thyroid issues.

As Phil was saying, there are only a handful of folks here on the forums who have actually been properly diagnosed and treated, up to and including surgery. I am hopeful that the spotlight will shine more and more on thyroid and endocrine problems, it just will take time. The hard part is waiting while you deal with the issue and look for answers now.

I lived with liver disease for a long, long time thanks to a contaminated blood transfusion. For years there was no treatment, it was simply cross your fingers and hope you could make the transplant list if the time came. Then there was a new drug approved, but it only had around a 25% success rate. Then a combination therapy was developed, raising the success rate to 50% or better. Now there are three drugs used, with a success rate of up to 90%. Amazing.

Nobody used to talk about fish oil. Now it's in Costco in huge bottles. Proper fats and nutrition? Even Dr. Oz is talking about it. CoQ10? I'd never heard about it until a few years ago. Gluten free? All the rage in Hollywood and beyond.

Gotta keep moving forward...

:anim_32:


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## Octavia (Aug 1, 2011)

bigfoot said:


> I think a couple of other things contributing to all of this is that most doctors don't have the time and/or inclination to keep up with the latest research and medical articles, and that most endocrinologists deal so heavily with diabetes, and not so much with thyroid issues.


On a related note, research has shown that it takes an average of 17 years for research findings to reach clinical practice in patient care.

See this write-up:

http://www.ncbi.nlm.nih.gov/books/NBK20521/

And this citation:
http://www.ihi.org/knowledge/Pages/...linicalknowledgeforhealthcareimprovement.aspx


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## bigfoot (May 13, 2011)

Octavia said:


> On a related note, research has shown that it takes an average of 17 years for research findings to reach clinical practice in patient care.


Wow! But I have to ask, will any doctors read it? LOL :evilgrin0029:


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## Octavia (Aug 1, 2011)

bigfoot said:


> Wow! But I have to ask, will any doctors read it? LOL :evilgrin0029:


Yes. In 2029.


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## bigfoot (May 13, 2011)

Well, I've started on the Wilson's treatment as of this morning. Took 7.5mcg of sustained-release T3 (compounded) at 8:00am and nothing has gone south yet. Another 7.5mcg tonight at 8:00pm, then check my pulse in the AM before tomorrow's morning dose, and if pulse is still <100 and temp is <98.6, increase dosage to 15mcg.

On a somewhat related side note, I discovered that our thermometer has probably been waaay off for my readings. We picked up one of those fancy temporal artery thermometers from Amazon and it showed 97.9 while the cheapo drug store digital showed 98.7. So I've probably had a lower temp than I've realized for quite a while.


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## chopper (Mar 4, 2007)

bigfoot said:


> Well, I've started on the Wilson's treatment as of this morning. Took 7.5mcg of sustained-release T3 (compounded) at 8:00am and nothing has gone south yet. Another 7.5mcg tonight at 8:00pm, then check my pulse in the AM before tomorrow's morning dose, and if pulse is still <100 and temp is <98.6, increase dosage to 15mcg.
> 
> On a somewhat related side note, I discovered that our thermometer has probably been waaay off for my readings. We picked up one of those fancy temporal artery thermometers from Amazon and it showed 97.9 while the cheapo drug store digital showed 98.7. So I've probably had a lower temp than I've realized for quite a while.


I paid like $80 for that Temporal lobe thermometer too. It also gives me low reading, like 97.6....but it does that with my kids and ex wife too and they are normal. I don't trust it. I use the infra-red ear thermometer now as "old reliable" and back it up with the Vick's Fast Read Thermometer. Both those thermometers always give me the exact same reading each time. In fact, my kids both just got sick last week. One had 102.7 fever on both those thermometers. The temporal lobe showed 100.1 which is almost normal and I know for sure they were higher than that. I felt them burning up and actually radiating heat as soon as I walked in the room.

*Braun Braun Thermoscan Ear Thermometer With Exactemp Technology*

http://www.amazon.com/Braun-Thermos...id=1342140301&sr=8-1&keywords=ear+thermometer

*Vicks SpeedRead Digital Thermometer (Oral, Rectal, Under Arm)*

http://www.amazon.com/Vicks-SpeedRe...=1342140340&sr=1-2&keywords=vicks+thermometer

The Vicks says its for oral and rectal use. I don't suggest you switch off though. It may leave a bad taste in your mouth.

I just went and took my temp with all 3. Here are the results. Note that I almost ALWAYS run HOT in the 99's (so much for being so hypo, eh?). The two other thermometers always show the same temp, which I believe to be accurate.


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## Andros (Aug 26, 2009)

nasdaqphil said:


> I paid like $80 for that Temporal lobe thermometer too. It also gives me low reading, like 97.6....but it does that with my kids and ex wife too and they are normal. I don't trust it. I use the infra-red ear thermometer now as "old reliable" and back it up with the Vick's Fast Read Thermometer. Both those thermometers always give me the exact same reading each time. In fact, my kids both just got sick last week. One had 102.7 fever on both those thermometers. The temporal lobe showed 100.1 which is almost normal and I know for sure they were higher than that. I felt them burning up and actually radiating heat as soon as I walked in the room.
> 
> *Braun Braun Thermoscan Ear Thermometer With Exactemp Technology*
> 
> ...


ROLF!!! I wonder how many "really" read what you wrote!!


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## chopper (Mar 4, 2007)

nasdaqphil said:


> _*"The Vicks says its for oral and rectal use. I don't suggest you switch off though. It may leave a bad taste in your mouth."*_










LOL. I thought I would sneak that one in there to see if anyone was paying attention.


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## Andros (Aug 26, 2009)

nasdaqphil said:


> LOL. I thought I would sneak that one in there to see if anyone was paying attention.


Well.............you got your answer; didn't you?


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## bigfoot (May 13, 2011)

LOL :sick0019:


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## bigfoot (May 13, 2011)

Well, I'm up to 30mcg of sustained-release T3 as of this morning. Still getting plenty of tiredness and some dizziness in the A.M. and early P.M. hours. Part of this probably has to do with my adrenals, on top of using the testosterone gel, too. Staying in close touch with the doc and also trying to get a little time off from work to focus in on things. Makes me nervous to be taking so much T3, but the compounded sustained-release seems vastly different than the 5mcg (and 2.5mcg, and 1.25mcg) of Cytomel I couldn't even experimentally tolerate last year.

Interesting read on the "WTS" treatment: http://www.ncbi.nlm.nih.gov/pubmed/16883675


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## Andros (Aug 26, 2009)

bigfoot said:


> Well, I'm up to 30mcg of sustained-release T3 as of this morning. Still getting plenty of tiredness and some dizziness in the A.M. and early P.M. hours. Part of this probably has to do with my adrenals, on top of using the testosterone gel, too. Staying in close touch with the doc and also trying to get a little time off from work to focus in on things. Makes me nervous to be taking so much T3, but the compounded sustained-release seems vastly different than the 5mcg (and 2.5mcg, and 1.25mcg) of Cytomel I couldn't even experimentally tolerate last year.
> 
> Interesting read on the "WTS" treatment: http://www.ncbi.nlm.nih.gov/pubmed/16883675


This makes much sense as a better option for folks who are struggling w/other issues as well. Dessicated porcine T3 reaches it's peak in the human body in 4 hours.

That is much too fast for those who have "other" issues.

I really think this is going to work for you! I "really" do!

Thanks for that link; I have bookmarked it.


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## bigfoot (May 13, 2011)

Thanks! And yes, it sure does. I had no idea until recently that they could even compound this stuff. I think going forward I am probably going to try a blend of T4/T3 after this treatment protocol. If anything, it is helping me wean off T4-only.


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## Andros (Aug 26, 2009)

bigfoot said:


> Thanks! And yes, it sure does. I had no idea until recently that they could even compound this stuff. I think going forward I am probably going to try a blend of T4/T3 after this treatment protocol. If anything, it is helping me wean off T4-only.


Coooooooooooooooooooolalula! Keeping positive thoughts for your success on my end!


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## bigfoot (May 13, 2011)

Ongoing report... so I've been taking the 60mcg of the compounded slow-release T3 for 5 days and yesterday started feeling pretty anxious and jittery. Pulse was 113 at one point. Got in touch with the doc and we're going to drop me down to 52.5mcg. My temps haven't been at the 98.6 average, instead they've been see-sawing a bit. We'll see if backing off will eliminate the nervousness and keep temps in the right spot. The dizziness has finally subsided a lot, thank goodness.

This Wilson's treatment protocol is definitely time-consuming, both for the patient and the doctor. You have to keep on schedule for the medication changes, take your temp and pulse throughout day, adjust based on that and side-effects, maintain a detailed log, and keep in correspondence with the doc. I can see why more doctors aren't on board with this. Patient compliance must be a total nightmare.


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## Andros (Aug 26, 2009)

bigfoot said:


> Well, I'm up to 30mcg of sustained-release T3 as of this morning. Still getting plenty of tiredness and some dizziness in the A.M. and early P.M. hours. Part of this probably has to do with my adrenals, on top of using the testosterone gel, too. Staying in close touch with the doc and also trying to get a little time off from work to focus in on things. Makes me nervous to be taking so much T3, but the compounded sustained-release seems vastly different than the 5mcg (and 2.5mcg, and 1.25mcg) of Cytomel I couldn't even experimentally tolerate last year.
> 
> Interesting read on the "WTS" treatment: http://www.ncbi.nlm.nih.gov/pubmed/16883675


How ironic, I read that abstract just the other day when doing some research!

Maybe the doc is bumping you up too fast? I am on 31.5 mcgs of T3 via Armour. You should be fine but we did not put me straight on to a high dose.

Good to hear from you!


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## bigfoot (May 13, 2011)

Yeah, it'll be interesting to see where I wind up when the dust settles from all of this. I know since it's slow-release compounded T3, there really isn't an exact conversion to equivalent T4 or T3 potency. I do wish there was some sort of rough idea at least.

My theory is that I'm in limbo-land right now with my slow-release T3 building up rapidly, while my T4 burns itself out slowly, and who knows how quick the Reverse T3 is being cleared out. It's been about 2.5 weeks since I stopped taking T4; the half-life is around a week. So I figure right now I have somewhere between 44mcg and 22mcg of T4 floating around.


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## bigfoot (May 13, 2011)

Ongoing update... still holding at the 52.5mcg level for the T3. My temps are still on a roller coaster, with my body trying to compensate; one day I will see some 98.5 and 98.6's, the next day I will be stuck around 98.0 or 98.1 degrees (F).

In speaking with the doc it sounds like my body is definitely burning through some Reverse T3, but that this round of treatment may not get me to my 98.6 degree "set point". We'll keep going on the 52.5mcg for another day or two, then bump down to 45mcg and see how that works out. Ultimately we're likely headed down and off the T3-only (barring some temperature miracle), and she again mentioned Armour and Naturethroid.


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## bigfoot (May 13, 2011)

Saw the doc today -- a little sooner than I had anticipated, but they had a cancellation. (In hindsight, that was a good thing.) This morning after taking my 52.5mcg of slow-release T3 and taking my Androgel I was about climbing the walls. You know, the whole over-medicated feeling: lots of anxiety about nearly anything, nervousness about even going out, feeling jittery and very wired & ramped up, the whole ball of wax. The Wilson's treatment provides you with a very small amount of T4 (12.5mcg) to take if side-effects get bad. The idea is you take it and about 45 minutes later the side-effects are greatly reduced.

This all sounds good in theory, but I was a little hesitant and speculative on just how _well_ this would work. So I popped 12.5mcg of generic T4 and sure enough, within a half-hour I was feeling much better. Within an hour it was almost like nothing had happened. Saw the doc and we brainstormed a bit and discussed things. She isn't too surprised that someone with all of my issues and sky-high Reverse T3 didn't respond to the Wilson's temperature treatment on the first go-around. Even though I'm not exactly responding well to the treatment, the boatloads of Reverse T3 should still be being burned up from taking only T3 anyway.

So we are going to continue reducing the T3 slowly, with 2-3 days between each dosage drop (7.5mcg at a time). If I reach a point where things feel pretty good, I can take a little longer. Then we are going to transition over to a T4 + T3 combo such as Levoxyl + Cytomel (or maybe quick trial of Armour) and try to get in the ballpark for a good dose, then probably switch that over to a compounded slow-release version for fine-tuning in the longer term.

Whew. I know I'm getting a little winded, time to give the keyboard a rest.


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## Andros (Aug 26, 2009)

bigfoot said:


> Ongoing update... still holding at the 52.5mcg level for the T3. My temps are still on a roller coaster, with my body trying to compensate; one day I will see some 98.5 and 98.6's, the next day I will be stuck around 98.0 or 98.1 degrees (F).
> 
> In speaking with the doc it sounds like my body is definitely burning through some Reverse T3, but that this round of treatment may not get me to my 98.6 degree "set point". We'll keep going on the 52.5mcg for another day or two, then bump down to 45mcg and see how that works out. Ultimately we're likely headed down and off the T3-only (barring some temperature miracle), and she again mentioned Armour and Naturethroid.


Not everyone has a normal body temperature of 98.6°. Do you have previous records to confirm or disconfirm?


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## bigfoot (May 13, 2011)

Yeah, for better or worse, I'm a 98.6 kind of person.

More of the jittery feeling this morning and some heart palps thrown in. Who needs coffee anyway? (LOL) I can only imagine my body is burning through the Reverse T3 quickly at this rate, which is fine by me!


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## Andros (Aug 26, 2009)

bigfoot said:


> Yeah, for better or worse, I'm a 98.6 kind of person.
> 
> More of the jittery feeling this morning and some heart palps thrown in. Who needs coffee anyway? (LOL) I can only imagine my body is burning through the Reverse T3 quickly at this rate, which is fine by me!


I am glad you have a "baseline" for body temp. Way to go!

You have a good imagination; I hope it's true!


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## bigfoot (May 13, 2011)

Well, finally a bit of good news to report... I have been at the 37.5mcg level of the SRT3 treatment for a few days and things seem to be improving. My temps have still been see-sawing; one day they might average 98.1 degrees (F), the next 98.6, followed by 98.3. The anxiety, jittery feeling, and heart palps have diminished greatly. Some days I even have a little more energy. No thanks to our hot weather and lack of A/C recently, but I have been sweating like crazy, too. (Nature's detox, I suppose.)

I may try dropping down to 30mcg SRT3 tomorrow, depending on how things go today. Felt a little icky this morning, but I have had a couple good days in a row now prior, so I am sucking it up. The gluten-free has been going well; in case anyone is wondering, the Cinnamon Chex is freakin' *awesome*.

And shhh... don't tell anyone, but I'm going to get a small iced coffee. I miss my morning cup of joe something fierce! arty0036:


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## bigfoot (May 13, 2011)

Okay-dokie, well I tried dropping down to 30 mcg of SRT3 last week and only made it a couple of days. My body did *not* respond happily to this change, so we bumped back up to 37.5 mcg.

In the meantime we have tried homeopathic adrenal drops, but I have not really noticed any benefit to my adrenals or fatigue/dizziness. Yesterday was a follow-up appointment with the ND and we are going to give a small amount of Isocort (2-3 pills) a trial run in the mornings. Hopefully this will address my low morning cortisol levels, and I was given a nighttime cream to try that should help attenuate my high evening cortisol levels.

Going forward we are going to keep me at 37.5 mcg SRT3 until the test results from the new Reverse T3 labs come back. At that point, if the Reverse T3 has dropped significantly, we will begin switching over to a combination T4/T3 therapy. At this point we aren't really on the "Wilson's Temp. Syndrome" treatment per se, but my doc doesn't think my body will tolerate additional up/down ramping cycles of that protocol at the moment.

In better news, my joints & muscles no longer ache or pop all the time, skin irritation flares have been quiet, stomach has settled down, appetite is better, and weight has been holding steady. Progress is progress!


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## Andros (Aug 26, 2009)

bigfoot said:


> Okay-dokie, well I tried dropping down to 30 mcg of SRT3 last week and only made it a couple of days. My body did *not* respond happily to this change, so we bumped back up to 37.5 mcg.
> 
> In the meantime we have tried homeopathic adrenal drops, but I have not really noticed any benefit to my adrenals or fatigue/dizziness. Yesterday was a follow-up appointment with the ND and we are going to give a small amount of Isocort (2-3 pills) a trial run in the mornings. Hopefully this will address my low morning cortisol levels, and I was given a nighttime cream to try that should help attenuate my high evening cortisol levels.
> 
> ...


Apparently, you have responded very well to 37.5 mcg. of T3. I am so happy to hear this!

That may be your forever requirement. I stabilized at 31 mcg. of T3 via 3 1/2 grains of Armour.

I am so happy for you. You are making progress. It takes time to heal as it took a long time of being unwell. This doc is "serious" and I am glad you found this wonderful doctor.

PS: You are right about the Cinnamon Chex!! Yum!


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## bigfoot (May 13, 2011)

Thanks Andros! Yes, this ND doc is great. She really takes the time to consider everything and doesn't jump into huge changes without trying small ones first. She also discusses the pro's/con's and helps you make an informed decision.

I talked to the compounding pharmacy and a rough estimate is that the sustained-release T3 is about half as potent as regular T3 (Cytomel, etc.). So my 37.5 mcg dose of SRT3 would be approximately 18.75 mcg of T3 (which at 4 times the potency of T4, would be roughly 75 mcg equivalent of levothyroxine). This puts me awfully close to the 88 mcg of Levoxyl that I was taking prior.

Thankfully the adrenal cream last night and the Isocort this morning haven't had any bad side-effects so far. Seems like I can tolerate them okay, which is great.

arty0045:


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## Andros (Aug 26, 2009)

bigfoot said:


> Thanks Andros! Yes, this ND doc is great. She really takes the time to consider everything and doesn't jump into huge changes without trying small ones first. She also discusses the pro's/con's and helps you make an informed decision.
> 
> I talked to the compounding pharmacy and a rough estimate is that the sustained-release T3 is about half as potent as regular T3 (Cytomel, etc.). So my 37.5 mcg dose of SRT3 would be approximately 18.75 mcg of T3 (which at 4 times the potency of T4, would be roughly 75 mcg equivalent of levothyroxine). This puts me awfully close to the 88 mcg of Levoxyl that I was taking prior.
> 
> ...


Did you feel any positive effects this morning?


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## bigfoot (May 13, 2011)

I don't want to jinx myself here, but it seems as though the icky morning feeling has been reduced some. Also, I've managed to be up since 6 a.m. doing some chores and light housework without getting super worn-out.


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## bigfoot (May 13, 2011)

So... the results are in from the latest Reverse T3 test:

*8/15/12*
T3, Reverse 39 L (90-350 pg/mL)

Woohoo! Looks like I have managed to drop it from a high of 512 to a low of 39 in just under six weeks. That is pretty cool. After seeing the doctor yesterday, she is transitioning me over to 50 mcg of Levoxyl and 5-7.5 mcg (5 mcg in AM, 2.5 mcg in PM) of Cytomel to start with. We are also going do a trial of 2.5mg-5mg of Cortef (hydrocortisone) in the AM to see if that helps my adrenals at all (hopefully better than the Isocort did). Thank God this doctor thinks outside the box and is so supportive. While I don't think naturopathic medicine can tackle everything, it's nice to have a mix between east and west.


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## Andros (Aug 26, 2009)

bigfoot said:


> So... the results are in from the latest Reverse T3 test:
> 
> *8/15/12*
> T3, Reverse 39 L (90-350 pg/mL)
> ...


Hubba, hubba!!! You go, bigfoot! I am soooooooooooooooooooooooo happy about this; truly!!

I know your wife and the rest of your family are delighted including the dog? ROLF!!!


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## bigfoot (May 13, 2011)

He said "woof woof". LOL

:tongue0013:


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## proud-armywife (Jul 29, 2011)

So glad to hear this- Your thread has given my hope through your bumpy road to recovering..... wishing you well!


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## bigfoot (May 13, 2011)

Thanks for the well wishes! There have been little glimmers of how things can be here and there. Randomly, when the stars are just properly aligned, I get a taste of how I used to feel. So I know my body can get there based on that, it's just a matter of doing some precise, exact thing(s).

A big part of it is the doctors. It has literally taken me a year and a half of cycling through various PCPs, specialists, and naturopaths to find a good mix for these issues. Some good, some bad (bad ones have been cut loose by now). Even with that being said, my knowledgable endo believes in dosing primarily by TSH only. My PCP didn't think my sky-high Reverse T3 levels were an issue, but was worried about my adrenals. And my gastroenterologist who caught the underlying liver disease missed the gluten sensitivity, despite testing for Celiac. My naturopath is a little more worried about my thyroid instead of adrenals, and found the gluten sensitivity and low B-12.

So that's why I say they each give you a piece of the puzzle. No single person can find everything or is perfect. That's just not a reasonable expectation. I certainly hope other folks' journey is a little easier, though! Hang in there, you will get there, everyone here is right about the body taking time to heal.

arty0016:


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## bigfoot (May 13, 2011)

Well, I'm at about a week and a half of taking the Levoxyl and Cytomel combo. Surprisingly, things were not as bad as I anticipated them being during the changeover from the compounded slow-release T3. I have been taking 50 mcg T4, 5 mcg T3, and 5 mg hydrocortisone -- all in the mornings. My temperatures have started to stabilize and I'm edging closer to 98.4 - 98.6 as an average.

The last few days I've had the "wired but tired" feeling and seem a little amped up, along with trouble sleeping and peeing lots. I'm guessing this might be due to the hydrocortisone bump up from 2.5 mg to 5 mg, so I've got a question into the doctor about it. (Or, perhaps it's the thyroid hormones building back up.) However, the dizziness I had is pretty much gone. Seems like you trade one thing for another with all these endocrine issues.

Next week the neurologist has me seeing an neuropsychologist and then a rheumatologist next month. Should be interesting appointments, been waiting for months to get in. Then I'm supposed to go back to the neurologist with the results. Phew.


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## Andros (Aug 26, 2009)

bigfoot said:


> Well, I'm at about a week and a half of taking the Levoxyl and Cytomel combo. Surprisingly, things were not as bad as I anticipated them being during the changeover from the compounded slow-release T3. I have been taking 50 mcg T4, 5 mcg T3, and 5 mg hydrocortisone -- all in the mornings. My temperatures have started to stabilize and I'm edging closer to 98.4 - 98.6 as an average.
> 
> The last few days I've had the "wired but tired" feeling and seem a little amped up, along with trouble sleeping and peeing lots. I'm guessing this might be due to the hydrocortisone bump up from 2.5 mg to 5 mg, so I've got a question into the doctor about it. (Or, perhaps it's the thyroid hormones building back up.) However, the dizziness I had is pretty much gone. Seems like you trade one thing for another with all these endocrine issues.
> 
> Next week the neurologist has me seeing an neuropsychologist and then a rheumatologist next month. Should be interesting appointments, been waiting for months to get in. Then I'm supposed to go back to the neurologist with the results. Phew.


Steriods can mess w/your glucose. I know you need to do this but just wanted you to know. May have something to do w/ the frequent voiding. If this is the case, you can control it with proper diet.

So good to hear from you and overall, I would say you are really really getting somewhere.

"Cherish the good days and I hope there are many!"


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## bigfoot (May 13, 2011)

Well, just heard back from the ND with an answer. She'd like me to try dropping back down to 2.5 mg of the Hydrocortisone, and consider getting off it entirely. It was sort of a brief test anyway, as I wanted to be sure I wasn't missing anything, especially since I felt decent on 5 mg of Prednisone earlier in the year. (If the dizziness comes back with a vengeance, well then I think we have our answer in that the adrenals are playing a part. Same goes for if my temps suddenly bottom out.)

As always, thank you so much for the support and to anyone reading, too. When I think back to early last year I was seeing temps in the 96.x range and my joints were stiff as a board with tingling in my legs, zero energy to walk around the block, not to mention everything else, with no explanation from any doctor. There has definitely been lots of progress, but it is hard to see the forest through the trees sometimes!


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## bigfoot (May 13, 2011)

Well, I saw the neuropsychologist yesterday. She seems to be very knowledgable and was super-nice. I spent about four hours discussing my years of medical issues as well as doing memory testing, math testing, computer-based testing, and so forth. It was pretty exhausting, both mentally and physically. Especially when I didn't really know what to expect going into it, having never done anything like this before. When I detailed everything I've gone through and discussed hormones (thyroid, adrenal, testosterone, etc.) and my experiences with them, she agreed and gave me even more info. She just shook her head and couldn't believe how so many of the doctors would try to throw all sorts of various medications at me.

At any rate, she is going to go over my labs, medical info, and test results to do a write-up and meet again next week. We will discuss the results and she will give me suggestions for things I can work towards or optimize.

In the meantime, I'm a couple of weeks into the Levoxyl + Cytomel. It seems as though I got a headache once starting the Levoxyl that has persisted pretty much since. I've been splitting the 100 mcg tablets and have to wonder if the food coloring is giving me a problem. Or if it is something else completely, like fillers in either it or the Cytomel or HC. (A little research shows that Levoxyl is supposed to be gluten-free.) I did not have this headache whatsoever on the compounded slow-release T3 only.


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## Andros (Aug 26, 2009)

bigfoot said:


> Well, I saw the neuropsychologist yesterday. She seems to be very knowledgable and was super-nice. I spent about four hours discussing my years of medical issues as well as doing memory testing, math testing, computer-based testing, and so forth. It was pretty exhausting, both mentally and physically. Especially when I didn't really know what to expect going into it, having never done anything like this before. When I detailed everything I've gone through and discussed hormones (thyroid, adrenal, testosterone, etc.) and my experiences with them, she agreed and gave me even more info. She just shook her head and couldn't believe how so many of the doctors would try to throw all sorts of various medications at me.
> 
> At any rate, she is going to go over my labs, medical info, and test results to do a write-up and meet again next week. We will discuss the results and she will give me suggestions for things I can work towards or optimize.
> 
> In the meantime, I'm a couple of weeks into the Levoxyl + Cytomel. It seems as though I got a headache once starting the Levoxyl that has persisted pretty much since. I've been splitting the 100 mcg tablets and have to wonder if the food coloring is giving me a problem. Or if it is something else completely, like fillers in either it or the Cytomel or HC. (A little research shows that Levoxyl is supposed to be gluten-free.) I did not have this headache whatsoever on the compounded slow-release T3 only.


Wow!!! That was some considerable time spent w/ the neuropsychologist. That "had" to be a most interesting experience!!! All to the good on top of it.

Can't wait to hear what she has to say that would be of interest to us readers here.

It darn well could be the food coloring. Only way to find out is to get the 50 mcg. sans the food color. Durn!!!

Since you have been cleansing the body of glutens, additives and other chemicals it is entirely possible that you are now super sensitive to these things.

What do you think about that?


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## bigfoot (May 13, 2011)

Andros said:


> Since you have been cleansing the body of glutens, additives and other chemicals it is entirely possible that you are now super sensitive to these things.
> 
> What do you think about that?


I think you could be right. It's funny that I really notice now when I've been "glutened". Similar to what the naturopath said, it can take days or longer to work out of your system.

I will definitely share the insight from the neuropsychologist. At first I thought maybe I was wasting my time, but I'm glad I kept the appointment.


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## Andros (Aug 26, 2009)

bigfoot said:


> I think you could be right. It's funny that I really notice now when I've been "glutened". Similar to what the naturopath said, it can take days or longer to work out of your system.
> 
> I will definitely share the insight from the neuropsychologist. At first I thought maybe I was wasting my time, but I'm glad I kept the appointment.


Very impressed w/all you are doing. It "will" pay off. It takes time but the "reward" is there.

And I know you do feel better than you did a year ago so that is good progress when it's all said and done.


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## bigfoot (May 13, 2011)

Today was the day to see the neuropsychologist and go over the results. I did average for most of the tests, except some trouble showing a little difficulty in the executive functions area (apparently your frontal lobe is in charge of this). So on the plus side, nothing like Alzheimer's is present. The doc presented me with a copy of the findings and went over everything, as well as gave me some daily suggestions going forward (exercise, planning, keeping notes, nutrition, monitoring progress, go easy on medication, utilize other resources, etc.).

In reality it probably isn't anything we didn't already know (mostly), and a lot of common-sense stuff. But it's reassuring to see things in black-and-white from a third party, as well as have a baseline. So many things are dynamic and fluid with all of these issues; I only hope that as things get more dialed-in and my body heals, my brain does, too.

It will be interesting to hear what the neurologist who ordered these tests has to say about them.


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## bigfoot (May 13, 2011)

And apparently the roller-coaster continues... I've been pretty exhausted the last couple of days, along with sore muscles, achy joints, weakness, and bad anxiety. I get the feeling this is from being a little under-medicated for thyroid while waiting for the T4 to kick in, along with the adrenals not being really performing well. Ugh! 

Thankfully have appt. with the ND doc shortly, should get results of my labs from last week, too.


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## bigfoot (May 13, 2011)

Latest labs:

*9/17/12*
TSH 2.75 (0.4-4.6 uIU/mL)
Free T4 0.85 (0.61-1.27 ng/dL)
Free T3 3.30 (2.4-4.2 pg/ML)

So this is certainly a surprise. I honestly expected my TSH to be some ridiculously high number based on how I'm feeling and the signs & symptoms. Instead it's relatively "normal". Suppose this may be from all the hormone movement and/or antibodies doing their thing. The Free T4 looks a little low, but I expect that since I'm taking Cytomel. We are going to try a few other things, such as switching from Cytomel back to the sustained release compounded T3. Also going to try taking some Deplin (for folate), as well as first acupuncture appt. tomorrow, and the ND gave me some GABA-calming sublingual lozenges to try. Follow-up ultrasound to last year's was this afternoon, so that will be a good comparison, too.


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## Andros (Aug 26, 2009)

bigfoot said:


> Latest labs:
> 
> *9/17/12*
> TSH 2.75 (0.4-4.6 uIU/mL)
> ...


It just looks like you are a bit undermedicated to me. You know that most of us press for that FT3 to be at about 75% of the range given by your lab.

And yes, low FT4 is normal when taking any form of T3.

The thing about TSH is if it's not at the right place for you, it can feel like you are death warmed over.

Oh, do let us know how the acupunture goes!!! How exciting!


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## bigfoot (May 13, 2011)

Well, I did my first round of acupuncture yesterday. The LAc doing it has been through many similar health issues and understood things pretty darn well. The needles weren't as bad as I thought, and I almost started falling asleep on the table and my stomach started gurgling and making noises I've never heard! Anyway, I go back next week for another session and he gave me a couple low-level herbs to try (one for GI, one for calming).


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## Andros (Aug 26, 2009)

bigfoot said:


> Well, I did my first round of acupuncture yesterday. The LAc doing it has been through many similar health issues and understood things pretty darn well. The needles weren't as bad as I thought, and I almost started falling asleep on the table and my stomach started gurgling and making noises I've never heard! Anyway, I go back next week for another session and he gave me a couple low-level herbs to try (one for GI, one for calming).


This sounds like you had a most pleasant and encouraging experience. There is so much about our bodies that we have yet to learn. Glad you are thinking outside the box!


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## bigfoot (May 13, 2011)

And now the joint pain and soreness is back, despite 62.5 mcg of T4 and 7.5 mcg of sustained-release compounded T3. I tell ya', lean on one thing and it changes another. Interestingly, when I was on the large doses of compounded T3 (and probably with a little T4 in the system still) my joints felt perfect. No creaking, cracking, muscle aches, etc. I do wonder if making the big changes to dosing and types of medication stirred up the antibodies a bit.

Ultrasound results over the phone showed no changes to the nodules. So that is good news! Endo wants another US in about a year and a half. I requested a copy anyway for my info.


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## Andros (Aug 26, 2009)

bigfoot said:


> And now the joint pain and soreness is back, despite 62.5 mcg of T4 and 7.5 mcg of sustained-release compounded T3. I tell ya', lean on one thing and it changes another. Interestingly, when I was on the large doses of compounded T3 (and probably with a little T4 in the system still) my joints felt perfect. No creaking, cracking, muscle aches, etc. I do wonder if making the big changes to dosing and types of medication stirred up the antibodies a bit.
> 
> Ultrasound results over the phone showed no changes to the nodules. So that is good news! Endo wants another US in about a year and a half. I requested a copy anyway for my info.


Very good news about the nodules.

Not sure your doctor changing your thyroid meds back and forth like that is a good thing. The body does react to these changes in a very big way.

And that is quite a low amount of T3. What is the plan w/ that?


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## bigfoot (May 13, 2011)

Ugh. More nausea, weakness, fatigue, and some neuropathy sprinkled in over the last week. You know how it is, the bed looks mighty comfy for the rest of the day. Time for another call to the doc...


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## Andros (Aug 26, 2009)

bigfoot said:


> Ugh. More nausea, weakness, fatigue, and some neuropathy sprinkled in over the last week. You know how it is, the bed looks mighty comfy for the rest of the day. Time for another call to the doc...


I still think you are undermedicated. Are you still on the compounded?


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## bigfoot (May 13, 2011)

Well, I saw the doc yesterday and we are going to try something else. Since I felt pretty good tapering off the 88 mcg Levoxyl at approx. the 2 week mark, that would put me somewhere between 20-30 mcg of T4 remaining in my system, while I was on about 30-37.5 mcg of the compounded T3 (which is only 2x as potent as T4, so roughly 60-75 mcg equivalent to T4). Total equivalent of T4 would have been in the neighborhood of 80mcg +-.

So the idea is ramp down from 62.5 mcg of Levoxyl to 25 mcg, and then start bumping up the compounded T3 from 15 mcg to 22.5 mcg and potentially a little more. I'm supposed to watch how I feel the next few days and stay in touch with the doc. I wasn't the most stable on T3-only, so I'm hoping the T4 helps buffer the side-effects and provides a good mix.

I think you may be right, I could be under-medicated. But I also have to wonder about Reverse T3 coming back, because the more T4 we add and the longer it builds up, the crappier I feel. (I know there can be that transition period, but this is downright awful.) Next week I'm supposed to get another Reverse T3 test done, so hopefully that sheds a little light.

Like trying to balance on the head of a pin...


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## Andros (Aug 26, 2009)

bigfoot said:


> Well, I saw the doc yesterday and we are going to try something else. Since I felt pretty good tapering off the 88 mcg Levoxyl at approx. the 2 week mark, that would put me somewhere between 20-30 mcg of T4 remaining in my system, while I was on about 30-37.5 mcg of the compounded T3 (which is only 2x as potent as T4, so roughly 60-75 mcg equivalent to T4). Total equivalent of T4 would have been in the neighborhood of 80mcg +-.
> 
> So the idea is ramp down from 62.5 mcg of Levoxyl to 25 mcg, and then start bumping up the compounded T3 from 15 mcg to 22.5 mcg and potentially a little more. I'm supposed to watch how I feel the next few days and stay in touch with the doc. I wasn't the most stable on T3-only, so I'm hoping the T4 helps buffer the side-effects and provides a good mix.
> 
> ...


I don't think exogenous T3 turns into rT3; I may be wrong. If I have time I will research. I think the rT3 comes in from the T4 conversion process. ????

This new plan is much more to "my" liking!! ROLF!!! I hope you agree? You only need a little T4 for peripheral Deiodination and if I am correct re the above, the more T4, the more rT3.

Whoooooooooooooooohoo!!! Just found this.

.The third pathway (type III) converts T4 to the inactive reverse-T3 and T3 to an inactive diiodothyronine. Both the anterior pituitary and the brain produce most of their ....................

continued here...........
http://content.karger.com/ProdukteDB/produkte.asp?Doi=123900


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## bigfoot (May 13, 2011)

Thanks for posting that link, Andros -- pretty interesting stuff!

Well, just got back from the rheumatologist. She doesn't think Lupus, RA, or Fibromyalgia is present. So on one hand, that's good news. But on the other hand, she is just about as stumped as the rest of the docs. The last couple of days have been a little better since dropping the Levoxyl 62.5 -> 25 mcg and raising the compounded T3 15 -> 22.5 mcg. Joint pain and neuropathy is pretty much gone.

I also had another acupuncture appointment yesterday. We also discussed Candida (coconut oil is supposedly good for that). I mentioned that my stomach had been upset the last few days and he stuck some needles in for that. Lo and behold, my stomach does feel better today. Coincidence? Perhaps. Acupuncture working? Maybe. I am still just a little of a skeptic, LOL. :tongue0013:


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## Andros (Aug 26, 2009)

bigfoot said:


> Thanks for posting that link, Andros -- pretty interesting stuff!
> 
> Well, just got back from the rheumatologist. She doesn't think Lupus, RA, or Fibromyalgia is present. So on one hand, that's good news. But on the other hand, she is just about as stumped as the rest of the docs. The last couple of days have been a little better since dropping the Levoxyl 62.5 -> 25 mcg and raising the compounded T3 15 -> 22.5 mcg. Joint pain and neuropathy is pretty much gone.
> 
> I also had another acupuncture appointment yesterday. We also discussed Candida (coconut oil is supposedly good for that). I mentioned that my stomach had been upset the last few days and he stuck some needles in for that. Lo and behold, my stomach does feel better today. Coincidence? Perhaps. Acupuncture working? Maybe. I am still just a little of a skeptic, LOL. :tongue0013:


You are probably deriving benefit from the acupuncture but like everything, it is a slow go. More importantly, by getting acupuncture, you are embracing positive healing thoughts. And this goes a very very long way.

Glad you are getting more T3; whoohoo to that!!! People just don't believe that about low FREE T3 until they experience the pain first hand. Proof is in the pudding as they say!


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## jenny v (May 6, 2012)

I have a TSI question!

I've never had my TSI levels tested before until my new endo and I'm not sure of the results. My level came back as <1.0 and the range is <=1.3.

I'm not sure how the heck to understand that result--it means I don't have any TSI in my system, right?


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## chopper (Mar 4, 2007)

jenny v said:


> I have a TSI question!
> 
> I've never had my TSI levels tested before until my new endo and I'm not sure of the results. My level came back as <1.0 and the range is <=1.3.
> 
> I'm not sure how the heck to understand that result--it means I don't have any TSI in my system, right?


Correct. The range is LESS THAN OR EQUAL TO 1.3 and yours is less than 1 so you are negative for TSI.

Remember the alligator's mouth always eats the larger number. :anim_63:


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## jenny v (May 6, 2012)

Thanks, nasdaqphil! I was always terrible at math and equations so I wasn't totally sure I was reading that right.

And we always said it was Pac Man's mouth eating the larger number! LOL!


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## bigfoot (May 13, 2011)

nasdaqphil said:


> Remember the alligator's mouth always eats the larger number. :anim_63:


Quote of the day!!


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## thyroidchick (Oct 18, 2012)

Bigfoot,

I sent you a Private Message. Hope to hear back from you!

Christin Osborne


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## bigfoot (May 13, 2011)

Just got it -- will try to reply ASAP :anim_32:


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## jenny v (May 6, 2012)

Another TSI question! How long does it stay in the body to show up on blood tests? For example, I have Hashi's but I've had several hyper episodes that usually last a couple of hours (full on hyper symptoms just hitting out of the blue--rapid heart rate, shaking, sweating, anxiety, heat intolerance, etc.). I've never had blood tests done around when those episodes occurred and all of my results show no TSI present.

Could the TSI be present during those episodes but gone by the time I've done labs? Or can something other than TSI cause those hyper episodes?


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## chopper (Mar 4, 2007)

You can't "catch them" on a test Jenny. I've had tests where my hands were shaking and heart pounding out of my chest and the tests are always the same. Then I've had tests where I could have sworn I was in a hypo phase and my numbers were high. It just doesn't work like that unfortunately.


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## jenny v (May 6, 2012)

Thanks, nasdaqphil! I have Hashi's and I'm having more and more hyper-like episodes recently and I can't figure out what's causing them. I never seem to have any TSI present in my labs, so I can't pinpoint the cause of the hyperactivity. It's exhausting!


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## bigfoot (May 13, 2011)

nasdaqphil said:


> You can't "catch them" on a test Jenny. I've had tests where my hands were shaking and heart pounding out of my chest and the tests are always the same. Then I've had tests where I could have sworn I was in a hypo phase and my numbers were high. It just doesn't work like that unfortunately.


This is good to know -- I would have thought they would be present, but shows you how much I know (or don't) on this stuff!


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## bigfoot (May 13, 2011)

Running update: Follow-up with neurologist today. He reviewed the ammonia labs and the neuropsychologist testing results. Nothing that jumped out at him as being really substantial, other than my high pulse (120s) in the office. For that he is sending me for an EKG. Doesn't sound like any sort of encephalopathy, either. Not that I would have been looking forward to a spinal tap! LOL

Another appt. with the endocrinologist later this week. Should be interesting to see his feelings about my adrenals being goofy and also the compounded T3 that I have been on via the naturopath doc... hopefully I don't get run out of the office. :tongue0013:

My hunch? My adrenals are trashed and can't compensate for the thyroid or much of anything else. Putting on testosterone gel in the morning doesn't seem to make them happy, either. But I've voiced these concerns before (last year) and didn't get much traction. Perhaps the saliva labs the ND did will carry a little weight. We shall see!


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## Andros (Aug 26, 2009)

jenny v said:


> Thanks, nasdaqphil! I have Hashi's and I'm having more and more hyper-like episodes recently and I can't figure out what's causing them. I never seem to have any TSI present in my labs, so I can't pinpoint the cause of the hyperactivity. It's exhausting!


You may have Trab which knocks TSI out of the saddle.

Trab
http://www.ncbi.nlm.nih.gov/pubmed/17684583

And all antibodies show a tendency to wax and wane; sadly. Hard to catch them at play!


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## Andros (Aug 26, 2009)

bigfoot said:


> Running update: Follow-up with neurologist today. He reviewed the ammonia labs and the neuropsychologist testing results. Nothing that jumped out at him as being really substantial, other than my high pulse (120s) in the office. For that he is sending me for an EKG. Doesn't sound like any sort of encephalopathy, either. Not that I would have been looking forward to a spinal tap! LOL
> 
> Another appt. with the endocrinologist later this week. Should be interesting to see his feelings about my adrenals being goofy and also the compounded T3 that I have been on via the naturopath doc... hopefully I don't get run out of the office. :tongue0013:
> 
> My hunch? My adrenals are trashed and can't compensate for the thyroid or much of anything else. Putting on testosterone gel in the morning doesn't seem to make them happy, either. But I've voiced these concerns before (last year) and didn't get much traction. Perhaps the saliva labs the ND did will carry a little weight. We shall see!


One thing for sure; you are narrowing the field. Rule in, rule out!

You are doing well on the compounded thyroid replacement; yes?


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## jenny v (May 6, 2012)

> You may have Trab which knocks TSI out of the saddle.


 Thanks for this suggestion! I go back for labs in 3 weeks and the endo is basically letting me pick and choose what I want tested, so I'll add this in. I've got all the usuals (TSH, FT3, FT4) and I've also added ferritin, B12, Vitamin D, TPO Ab, TGAb, and now Trab.


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## bigfoot (May 13, 2011)

Andros said:


> You are doing well on the compounded thyroid replacement; yes?


Some days, yes. Some days (like today), not so much. I think I'm still trying to find the sweet spot of exactly how much T4 & compounded T3.

I will ask about the TRab when I see the endo. Too bad the doc got a little miffed when I asked about TSI last year. Had to ultimately get that test done myself, LOL.


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## Andros (Aug 26, 2009)

bigfoot said:


> Some days, yes. Some days (like today), not so much. I think I'm still trying to find the sweet spot of exactly how much T4 & compounded T3.
> 
> I will ask about the TRab when I see the endo. Too bad the doc got a little miffed when I asked about TSI last year. Had to ultimately get that test done myself, LOL.


Is your compounded 4 to 1 ratio? I remember you had to pay out of pocket for that TSI; I remember it well.


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## bigfoot (May 13, 2011)

The sustained-release compounded T3 is roughly a 2:1 ratio as far as T3:T4 equivalent potency (quite a bit different than Cytomel's 4:1 ratio). So the 37.5 mcg of T3 I am taking is 'about' the same as taking 75 mcg of straight T4. Between that and the actual 25 mcg of Levoxyl I take, that puts me in the ballpark of a ~100 mcg total equivalent T4 dose.

Saw the endo today -- we are going to let the naturopath handle my thyroid matters for now, so that things aren't getting conflicting. The endo is obviously more western medicine oriented, so things like compounded T3, Reverse T3, dosing by FT3 & FT4, Wilson's temp. syndrome, adrenal fatigue, etc. are not really accepted. A little frustrating, but that's how it goes I suppose.

So, the short version is... nope, I did not get the TRab or any other thyroid labs done today. I will be seeing the naturopath next week, so hopefully I can ask then. I have been feeling pretty crummy the last few days and the fatigue is ridiculous. There has got to be something going on here; I don't think it's all thyroid related, but I am sure that is a big piece. Or maybe I just got 'glutened' at the restaurant the other night! LOL


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## bigfoot (May 13, 2011)

Okay-dokie, saw the ND today, new game plan. We are going to slowly drop the compounded T3 down a bit over about a week and a half's time (while maintaining 25mcg Levoxyl) and begin a total switch over to Naturethroid.

I'm excited _and_ a little scared at the same time. For one, I've never been on a "natural" thyroid medication like Armour or Naturethroid. But judging by the fact that I've tried: generic levothyroxine, Synthroid, Levoxyl, Cytomel, and compounded sustained-release T3; who knows, maybe this is the ticket?

The idea is to get me started on about a 3/4 grain dose first. The doc says (as others have also said here), that there is T1, T2, etc. in addition to the T4 and T3 present in the Naturethroid. Sounds like some people don't tolerate it well, as it can stir up the Hashi's antibodies. (Hopefully I am not in that camp.)

Anyhow, thus begins another journey! arty0045:


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## Andros (Aug 26, 2009)

bigfoot said:


> Okay-dokie, saw the ND today, new game plan. We are going to slowly drop the compounded T3 down a bit over about a week and a half's time (while maintaining 25mcg Levoxyl) and begin a total switch over to Naturethroid.
> 
> I'm excited _and_ a little scared at the same time. For one, I've never been on a "natural" thyroid medication like Armour or Naturethroid. But judging by the fact that I've tried: generic levothyroxine, Synthroid, Levoxyl, Cytomel, and compounded sustained-release T3; who knows, maybe this is the ticket?
> 
> ...


It's about time; keeping my fingers crossed for you. Let us know. What day will you start this?


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## bigfoot (May 13, 2011)

I start reducing the compounded T3 today and take 30 mcg for 2-3 days, then 22.5 mcg for 2-3 days, then 15 mcg for 2-3 days, then 7.5 mcg for 2-3 days, then switch over directly to the Naturethroid around that point, discontinuing the 25 mcg Levoxyl at that time.

The idea is to sort of mimic the amount of hormone that is in 3/4 grain before changing over. The doc gave me 1/2 grain tablets to use so we can dose at 3/4 grain and increase if needed to 1 full grain without having to buy more. (I'll have to check my notes, but I believe she has me taking 1/2 grain in the morning, then the remaining 1/4 grain in the afternoon.)

I'm anticipating feeling somewhat crappy, since I will have far less T3 in my system and the T4 will not have built up yet when I make the switch. :confused0064: Maybe I'll be pleasantly surprised, but I'm not going to hold my breath. I don't like all this switching around of medications, but there's only one way to find out if it works for me. If the end result is worth it, I will be thrilled!

One question for those who take Naturethroid or Armour; is it really a little more potent than synthetics due to the "higher bioactivity" as the Naturethroid advertising says?


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## Andros (Aug 26, 2009)

bigfoot said:


> I start reducing the compounded T3 today and take 30 mcg for 2-3 days, then 22.5 mcg for 2-3 days, then 15 mcg for 2-3 days, then 7.5 mcg for 2-3 days, then switch over directly to the Naturethroid around that point, discontinuing the 25 mcg Levoxyl at that time.
> 
> The idea is to sort of mimic the amount of hormone that is in 3/4 grain before changing over. The doc gave me 1/2 grain tablets to use so we can dose at 3/4 grain and increase if needed to 1 full grain without having to buy more. (I'll have to check my notes, but I believe she has me taking 1/2 grain in the morning, then the remaining 1/4 grain in the afternoon.)
> 
> ...


It can kick butt; that is why a good doctor is essential. It has to be titrated slowly and properly as you already know.


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## bigfoot (May 13, 2011)

Well, so far, so good. *knock on wood* My body seems to be tolerating the Naturethroid a little better than all the synthetics. Also, I was a little over-medicated on the compounded T3 according to the doc and labs last week (waiting for a copy). So I'm sure that wasn't helping things. Right now I'm at 3/4 grain (1/2 grain morning, 1/4 grain afternoon) and we may go to 1 grain (1/2 grain AM, 1/2 grain PM) depending on how things are progressing.

Because the T3 is so short acting, I am noticing a late morning "slump" since I have been taking the Naturethroid first thing around 6:30 a.m. Curious if anyone else on Armour or NT notices this, too? I may try to start taking the 1/4 grain portion around lunchtime -- I just worry that taking it with food may interfere with absorption.

Anyway, just wanted to pass along the good news. I'm hoping things keep slowly improving! I guess maybe Naturethroid isn't so bad after all.


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## bigfoot (May 13, 2011)

First off, I hope everyone had a great Thanksgiving!

So it's been a few weeks on the Naturethroid at this point. I started at 3/4 grain and worked my way up to 1 grain. At first things felt okay, then it definitely was too much medication and I started feeling waaay hyper. So I dropped back down to 3/4 grain and things improved somewhat. I am still dealing with the excessive fatigue, some nausea, anxiety, random headaches, etc. Joint pain and severeness of headaches has diminished somewhat. Also, my resting pulse has dropped back into the 60s.

The fact that I couldn't tolerate 1 grain tells me something is going on:
a) I don't need nearly as much medication since clearing the RT3 (used to take 88mcg Levoxyl).
b) NT 3/4 grain is too little, and 1 grain is too much.
c) My body can't handle the medication due to weak adrenals.
d) Something else is interfering with absorption.

I see the ND tomorrow and we will probably be testing for both H. Pylori as well as Candida. Apparently there is a pretty accurate DNA stool test that can be done. Also, we will focus on strengthening my adrenals.

<Nerd Mode On>

What I find interesting is that when you do the math, Naturethroid actually looks weak on paper with their own conversion guide. A 3/4 grain dose is said to be the same as 75 mcg of Levothyroxine. Yet a 3/4 grain only contains 28.5 mcg T4 and 6.75 mcg T3. (If you go on the assumption that T3 is four times more potent, that 6.75 mcg of T3 is equivalent to 27 mcg of T4.) Combining the two (28.5 + 27) gives you a total equivalent dose of 55.5 mcg in straight T4.

Naturethroid does say that this is "Due to the higher bioactivity of natural thyroid..." I'm not sure if I believe that or not, but it definitely seems stronger in experience. (FYI: I also called RLC Labs directly, and they do not plan on offering any future dose equivalent to 88 mcg of T4.)

Naturethroid Conversion Chart PDF

Lastly -- holy cow, this thread is up to 25 pages. My hat is off to anyone who has read through all of this!


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## bigfoot (May 13, 2011)

Well, had my follow-up appt. with the ND doc after a couple more weeks of being on 3/4 grain of Naturethroid. Interestingly, my TSH is now up over 4 and my FT3 and FT4 could both use a boost. Yet oddly, I don't feel super hypo. So per my ND, my body is looking for that extra hormone, thus the increased TSH secretion. Conversely, my TPO Ab and Thyroglobulin Ab are the lowest they've ever been! (I'll try to post actual lab values later.) We are attributing this largely to the gluten. Doc would like me to take an extra 1/4 grain of NT every other day and see how my body reacts (1 grain every day felt like too much).

And for more interesting news, my recent adrenal saliva test shows a good response in the early morning, but a very low flatline from lunchtime onwards. This all points to the 'low reserve' stage of adrenal fatigue and we are considering another run of hydrocortisone if things don't turn around.

Not only that, but my testosterone is heading downhill, fast (total T around 300, down from 600-700's). This is odd since I have been consistently using testosterone gel for years now. My PSA has been rising, too. (Potential trouble with prostate cancer in family.) I missed a couple of days of applying it this week and if anything, my energy seemed a little better. (Who knows, since cortisol helps carry hormone into the cells, it makes sense that my body isn't able to fully utilize the extra testosterone and thyroid hormones that I feed it.)

We also are running the ALCAT test to see if any other foods and compounds are contributing to all of this. In the meantime, I've been advised to avoid eating oats (even GF) due to their closeness with gluten.

So... to make a long story short, I see a new 'out of the box' PCP that my ND recommended next week, along with a urologist my endo recommended. Then it's back to the ND to ponder the next steps. Things are definitely moving and we certainly are hitting on the right areas!


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## bigfoot (May 13, 2011)

A little follow-up... I'm still on the alternating 3/4 & 1 grain schedule for NT. The new PCP I was recommended to is sending me to an infectious disease specialist if he can arrange it. My energy levels are still pretty much in the dumps. The ND has added pregnenolone to the mix to see if it helps at all.

In the meantime, things are getting weird in other areas. I went from having two small cavities a while back to now six! Mouth has been bone dry and so has my skin. I'm sure this plays into the various hormones, metabolism, etc. (Before all of this my last cavity was probably ten years ago.)

Per the urologist, it was suggested to consider stopping the Androgel for the low testosterone, due to increased cancer risk and elevated PSA. So I've stopped that and am working with the ND on alternative therapies (Maca). In a way, stopping the testosterone replacement has been both a blessing and a curse. In some ways it seemed to give me energy, in other ways it seemed to be making me feel more sick. I now have to wait up to six months to see if my body can make its own T.


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## Andros (Aug 26, 2009)

bigfoot said:


> A little follow-up... I'm still on the alternating 3/4 & 1 grain schedule for NT. The new PCP I was recommended to is sending me to an infectious disease specialist if he can arrange it. My energy levels are still pretty much in the dumps. The ND has added pregnenolone to the mix to see if it helps at all.
> 
> In the meantime, things are getting weird in other areas. I went from having two small cavities a while back to now six! Mouth has been bone dry and so has my skin. I'm sure this plays into the various hormones, metabolism, etc. (Before all of this my last cavity was probably ten years ago.)
> 
> Per the urologist, it was suggested to consider stopping the Androgel for the low testosterone, due to increased cancer risk and elevated PSA. So I've stopped that and am working with the ND on alternative therapies (Maca). In a way, stopping the testosterone replacement has been both a blessing and a curse. In some ways it seemed to give me energy, in other ways it seemed to be making me feel more sick. I now have to wait up to six months to see if my body can make its own T.


Sounds to me like you have Sjogren's Syndrome and/or Lupus or both. Have you been tested for these?

Good to hear from you but not good about your new concerns and dental issues!


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## bigfoot (May 13, 2011)

Hi Andros -- thanks for the suggestion. Nope, no testing was ever done for either one of those. I will be asking at the next doc's appointment, though.


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## Andros (Aug 26, 2009)

bigfoot said:


> Hi Andros -- thanks for the suggestion. Nope, no testing was ever done for either one of those. I will be asking at the next doc's appointment, though.


Please let us know. I do not wish more on you and I would be very pleased to hear that this is not the case.

ANA which is "suggestive" if present for both Sjorgren's and Lupus. (and other things)

Anti-dsDNA definitive for Lupus and biopsy of salivary gland for Sjogren's.


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## bigfoot (May 13, 2011)

Well, the ND has let me creep up to 1 full grain of Naturethroid. I am taking it in divided doses, 1/2 grain in the early AM and a 1/2 grain in the mid-afternoon. Also, we stopped the pregnenolone for now, as it was seemingly giving me bad side effects (light-headed, dizzy, etc.). Have also started on another Testosterone supplement, hopefully this will help jump-start my body's own production of "T", in addition to the Maca supplement. More labs next week to check on how the thyroid numbers look and see how the testosterone is looking.


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## Andros (Aug 26, 2009)

bigfoot said:


> Well, the ND has let me creep up to 1 full grain of Naturethroid. I am taking it in divided doses, 1/2 grain in the early AM and a 1/2 grain in the mid-afternoon. Also, we stopped the pregnenolone for now, as it was seemingly giving me bad side effects (light-headed, dizzy, etc.). Have also started on another Testosterone supplement, hopefully this will help jump-start my body's own production of "T", in addition to the Maca supplement. More labs next week to check on how the thyroid numbers look and see how the testosterone is looking.


One thing I will say is that your ND is determined and so are you. This is a good team. You will get to the top of the mountain!!

Your ferritin is good; right?


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## bigfoot (May 13, 2011)

Yes, thankfully my Ferritin looks okay -- the ND checked it out last month. She is one heckuva doc and so supportive and open-minded! Here are some recent labs; bear in mind I had just switched over to Naturethroid 3/4 grain and we are still trying to optimize the dose, so things probably look different now.

*12/03/12*
Ferritin 74.4 (range 10-300 ng/mL)
Free T3 2.98 (2.4-4.2 pg/mL)
Free T4 0.73 (0.61-1.27 ng/mL)
TSH 4.12 (0.40-4.6 uIU/mL)
Thyroglobulin Ab 37.5 (<40 IU/mL)
TPO Ab <10 (<35 IU/mL)
C-Reactive Protein 1.48 H (<0.70 mg/L)
Total Testosterone 315 (300-1080 ng/dL)
Free Testosterone 80 (47-244 pg/mL)
IgG Helicobater Pylori Antibody 0.12 (<0.89 IV)

What is interesting is to compare my old antibody counts when I was DX'd with Hashi's in 4/2011. Back then, my TPO Ab was 253.7 and my TG Ab was 45. I know the antibodies wax and wane, but I really do think tackling the outstanding liver issue, eliminating gluten (and most grains), and focusing on supplements & nutrition has helped greatly.

In other news my liver labs are still looking good, so I can stop the Imuran, per the gastroenterologist. Just need to be carefully monitored monthly over the next year to make sure the AIH stays at bay. That makes two liver diseases I've beaten back. Woohoo -- fingers crossed!


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## Andros (Aug 26, 2009)

bigfoot said:


> Yes, thankfully my Ferritin looks okay -- the ND checked it out last month. She is one heckuva doc and so supportive and open-minded! Here are some recent labs; bear in mind I had just switched over to Naturethroid 3/4 grain and we are still trying to optimize the dose, so things probably look different now.
> 
> *12/03/12*
> Ferritin 74.4 (range 10-300 ng/mL)
> ...


That is just awesome news about the liver; one of the most important organs in our bodies!! Yowza!!

And one can see the difference in your now labs as compared to maybe a year ago? This is wonderful.

So; where does your NP (and you) want to see your TSH and FREE T3 at?

I am also wondering if you took CoQ10 if that would bring down that C-reactive protein. Maybe this would be worth running by your NP?
http://www.nutritionjrnl.com/article/S0899-9007(11)00416-3/abstract


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## bigfoot (May 13, 2011)

Thanks for the link -- yep, I've been taking CoQ10 along with the other supplements (Vit. C, Vit. B-12, Vit. D, Vit. E Tocopherols, Multivitamin, Fish Oil, etc.). I know the ND would like to see my thyroid numbers improved (e.g., TSH in the 1.0-2.0 area); I will be having new labs drawn later in the week. That should give us a little insight into how/if the Naturethroid is working out.


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## bigfoot (May 13, 2011)

New labs below, after starting on 3/4 grain last year, then alternating 3/4 & 1 grain, and finally 1 grain recently. Needless to say, after these labs my doc increased the dose to 1 1/4 grains daily.

*1/26/13*
TSH 3.675 (0.4-4.0)
Free T3 3.1 (2.3-4.2)
Free T4 0.85 (0.84-1.51)
Total Testosterone 202 (241-827)
Free Testosterone 48 (47-244)
% Free Testosterone 2.4 (1.6-2.9)
SHBG 21.6 (15.0-87.0)

Since I stopped taking Androgel for low testosterone in Dec. due to an elevated PSA, my testosterone levels have totally tanked (this is expected). Unfortunately, this means I feel like total garbage. The "treatment" is to wait for six months while your testes try to produce their own testosterone. Ugh. Thank goodness my ND is so sharp -- we may try a different RX while balancing thyroid and keeping an eye on adrenals. I don't think I could handle six months of pathetic testosterone levels. Also will be seeing an infectious disease doc in the next few months. Now THAT should be interesting!

hugs6


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## Andros (Aug 26, 2009)

bigfoot said:


> New labs below, after starting on 3/4 grain last year, then alternating 3/4 & 1 grain, and finally 1 grain recently. Needless to say, after these labs my doc increased the dose to 1 1/4 grains daily.
> 
> *1/26/13*
> TSH 3.675 (0.4-4.0)
> ...


I think you are making good progress with the thyroid numbers. We all know that slow titration is the best way to go and most usually insures a high rate of success.

What a shame about the testosterone! Looks like there is nothing to do but wait it out. Let us know what your ND comes up with re this.

You are right; I think your ND is one "sharp cookie!" Too bad you did not find her sooner.


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## bigfoot (May 13, 2011)

Thanks & you are right Andros -- and I should have listened to those that told me to go gluten-free a year prior!

I started a quick poll over in the General forum about folks taking Armour or NT and how much they take in the AM. I have tried taking a full 1 grain in the early AM (like around 6:00 a.m.) to get me going, but it totally zonks me out the rest of the day. (This may be an adrenal issue, too.)

Any suggestions on how to break up the dosing for 1.25 grains total a day? (Something like 1/2 in early AM, 1/2 before lunch, and 1/4 later in day? Or otherwise?)

...Edit...

Heard back from my doc, will try dropping back to 3/4 grain or 1 grain a day total. Apparently the new testosterone treatment I started last week could cause your body to need less thyroid.


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## bigfoot (May 13, 2011)

Things change quickly, don't they? The new testosterone treatment didn't pan out, in fact it made me feel completely awful. So we've re-started on the old medication (Androgel). Neither my doc or I can wrap our brains around all of this. We are going to try having me take the 1 grain of Naturethroid at night, since it seems like it knocks me out when I take it in the early AM anyway. More thyroid labs in about a month, too.

Something interesting the doc brought up -- Lyme Disease. I was tested years ago for it, but it sounds like there can be a high rate of false negatives. I don't remember ever being bitten or having a bullseye rash, but I did used to spend a lot of time working in the field and brushing the little buggers off me. Anyway, this is just another "out of the box" thought she had, and we're going to try testing for it again in case.


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## bigfoot (May 13, 2011)

Latest labs below -- I see slow but steady progress. Still symptomatic, although likely also from the other medical issues. The annoying brain fog has made a comeback, too. And over the course of the last couple of weeks my neck has been tight / tender / achy.

My problem is the dosing of products like Naturethroid and Armour. I have tried taking one large amount either in the early AM or late PM, but that didn't seem to work so well. And if I split up the doses (say, at 1/4 grain or 1/2 grain) throughout the day, it seems to work a little better, but I still get the "crash" about 3-4 hours after (coincidentally, the T3 half-life) taking it.

*2/28/13*
TSH 2.628 (0.4-4.0)
Free T3 3.3 (2.3-4.2)
Free T4 1.04 (0.84-1.51)


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## Andros (Aug 26, 2009)

bigfoot said:


> Latest labs below -- I see slow but steady progress. Still symptomatic, although likely also from the other medical issues. The annoying brain fog has made a comeback, too. And over the course of the last couple of weeks my neck has been tight / tender / achy.
> 
> My problem is the dosing of products like Naturethroid and Armour. I have tried taking one large amount either in the early AM or late PM, but that didn't seem to work so well. And if I split up the doses (say, at 1/4 grain or 1/2 grain) throughout the day, it seems to work a little better, but I still get the "crash" about 3-4 hours after (coincidentally, the T3 half-life) taking it.
> 
> ...


Your numbers are looking better; don't you think?

Did your doc test for Lyme? I was treated for it last year. And I believe I still have lingering effects. The pain was horrific? Do you have a lot of pain and night sweats?

Did not get to your other posts as I have been busy doing a lot of back door monitoring.


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## bigfoot (May 13, 2011)

I do, too -- although I have my doubts some days of whether Naturethroid is the ticket, or if switching back to Levoxyl / compounded T3 combo would be better. But I'm not quite ready to throw in the towel just yet.  (Besides, geez, NT is soooooo cheap.)

The ND ran a "CD57" test for Lyme last week -- still waiting on the results. (Apparently it requires a pathologist to interpret the data.) My previous test for Lyme was probably about 4-5 years ago, was the standard lab test, and turned up a "negative" result.

I have had night sweats off and on over the last few years. Being on the hypo side, having testosterone very low, and/or medication interactions seem to push the right buttons for them. The mild joint pain & aches seem to follow a similar pattern -- improving when hormones are closer to optimal.

If it *does* turn out to be Lyme or tick-related, that would really be a surprise, and it sure would explain a lot. Even so, I'm not holding out for it... LOL


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## Andros (Aug 26, 2009)

bigfoot said:


> I do, too -- although I have my doubts some days of whether Naturethroid is the ticket, or if switching back to Levoxyl / compounded T3 combo would be better. But I'm not quite ready to throw in the towel just yet.  (Besides, geez, NT is soooooo cheap.)
> 
> The ND ran a "CD57" test for Lyme last week -- still waiting on the results. (Apparently it requires a pathologist to interpret the data.) My previous test for Lyme was probably about 4-5 years ago, was the standard lab test, and turned up a "negative" result.
> 
> ...


I was not surprised; I expected it sooner or later as I love the outdoors and have had many tick bites. Deet does not always work. LOL!

Anyhow, I don't want to wish it upon you but it could explain a "lot" of things. Hmmmmmmmmmm!

If you are seeing results, it would be in your best interest to stay on track with the NT. Changing around only causes setbacks. And there is no good place except the right place. You will likely continue to experience a myriad of symptoms until you are exactly where you need to be which is euthyroid.


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## bigfoot (May 13, 2011)

Secretly, I know you are right. I'm just being impatient and wanting quicker results, argh. Thank you for the ongoing encouragement and support! hugs6

Lyme would be an interesting development, as I did grow up in the NE and spent plenty of time outdoors both there and elsewhere. I just found out that the first lab can't run the CD57 test, so it's on to the next. Too bad they already drew the blood!


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## Andros (Aug 26, 2009)

bigfoot said:


> Secretly, I know you are right. I'm just being impatient and wanting quicker results, argh. Thank you for the ongoing encouragement and support! hugs6
> 
> Lyme would be an interesting development, as I did grow up in the NE and spent plenty of time outdoors both there and elsewhere. I just found out that the first lab can't run the CD57 test, so it's on to the next. Too bad they already drew the blood!


Let us know about the Lyme when you can. This is going to be interesting. There are 5 zoological diseases spread by ticks. And you don't have to present w/a "bull's eye" necessarily.

The best results are the permanent results! Hang tough.


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## lblowers (Mar 27, 2013)

I have TSH 0.263, TPOAb 38, TSI 166.

T3, T4, everything else is "normal". HA!!

I have been on a non-medication merry-go-round for over two years. Have been diagnosed with Graves and Hashimotos. Am having a TT in a week!!


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## bigfoot (May 13, 2011)

So, now it gets weird. Here are the latest thyroid labs from last week. My TSH has gotten worse, my Free T3 has gotten a little better, and my Free T4 has dropped to below end of the low range. Additionally, my TPO Ab's have spiked high above the upper range for the first time in a year.

I am still taking my 3/4 grain of Naturethroid at night before bed, followed by 1/4 grain in the early AM and another 1/4 grain before lunch, around 11 AM, for a grand total of 1 1/4 grains daily. My doc was concerned that eventually Naturethroid could be mistaken by the body and spike the thyroid antibodies. I think it could be that, or else my immune system rebelling since post-Imuran treatment, or else the natural progression of Hashi's.

I am now wondering about trying something like Tirosint, which has no fillers, and combining it with a small amount of Cytomel to get my extra T3. Or else sticking it out with the Naturethroid, but I do have my doubts now. (I do know I read anecdotally on the STTM website that people with Hashi's need quicker Armour titration to avoid symptoms coming back, but I don't know if that's reality or not.)

*3/27/12:*
TSH 3.071 (0.4-4.0)
Free T3 3.7 (2.3-4.2)
Free T4 0.83 (0.84-1.51)
TPO Ab 90.4 (0.0-60.0)
Thyroglobulin Ab <32.0 (0.0-60.0)


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## bigfoot (May 13, 2011)

lblowers said:


> I have TSH 0.263, TPOAb 38, TSI 166.
> 
> T3, T4, everything else is "normal". HA!!
> 
> I have been on a non-medication merry-go-round for over two years. Have been diagnosed with Graves and Hashimotos. Am having a TT in a week!!


Gotta love "normal"! Glad to hear you are getting a TT, good luck and prayers for a quick recovery!


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## Andros (Aug 26, 2009)

bigfoot said:


> So, now it gets weird. Here are the latest thyroid labs from last week. My TSH has gotten worse, my Free T3 has gotten a little better, and my Free T4 has dropped to below end of the low range. Additionally, my TPO Ab's have spiked high above the upper range for the first time in a year.
> 
> I am still taking my 3/4 grain of Naturethroid at night before bed, followed by 1/4 grain in the early AM and another 1/4 grain before lunch, around 11 AM, for a grand total of 1 1/4 grains daily. My doc was concerned that eventually Naturethroid could be mistaken by the body and spike the thyroid antibodies. I think it could be that, or else my immune system rebelling since post-Imuran treatment, or else the natural progression of Hashi's.
> 
> ...


Darn it. I hope I can get you and consequently your doctor to see and understand that keeping the patient undermedicated increases the antibodies which in turn increase the TSH (Ab blocking the deiodination) and by suppressing the TSH with sufficient thyroxine replacement, the antibodies quiet down and as a matter of fact become undetectable.

No matter how you cut the cake, this is a case of where rising TSH indicates under treatment.

When taking T3, it is normal for FT4 to be low. I sure hope you doc will continue to titrate you by 1/4 grain every 8 weeks to get you over this hump.

STTM is right to a certain point but I will amend that statement by saying the patient needs constant and steady titration every 6 to 8 weeks until such time as things are righted. 1/4 grain at a time.

It is not the medication, it is the innappropriate titration of it.

Hope you don't mind my forthrightness on this matter. I mean well.

Please let me know what course you intend to take. And I hope you know that nothing in the world would please me better than to see you clicking your heels in the air!


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## Andros (Aug 26, 2009)

bigfoot said:


> So, now it gets weird. Here are the latest thyroid labs from last week. My TSH has gotten worse, my Free T3 has gotten a little better, and my Free T4 has dropped to below end of the low range. Additionally, my TPO Ab's have spiked high above the upper range for the first time in a year.
> 
> I am still taking my 3/4 grain of Naturethroid at night before bed, followed by 1/4 grain in the early AM and another 1/4 grain before lunch, around 11 AM, for a grand total of 1 1/4 grains daily. My doc was concerned that eventually Naturethroid could be mistaken by the body and spike the thyroid antibodies. I think it could be that, or else my immune system rebelling since post-Imuran treatment, or else the natural progression of Hashi's.
> 
> ...


Here you go.............

In reality you should not have any autoimmune antibodies in your body at all although of course you do need normal antibodies to provide you with vital resistance to infectious diseases, etc. If you do have autoimmune antibodies, you can be sure that they will be doing you no good. Furthermore, if you have one type of autoimmune antibody active in your body, you may well have others to go with them, and they won't be doing you any good either.

In practice, because thyroid antibodies levels tend to wax to wane, they may not always show up as being abnormally high in a blood test - the trick is to catch them when they are high! In Dr Bo Wikland's clinic in Sweden thyroid problems are routinely investigated using the Fine Needle Aspiration (FNA) technique. Dr Wikland's experience, as published in The Lancet (2001 and 2003), is that FNA is actually very valuable in the demonstration of thyroid autoimmunity; superior in fact to antibody testing. It is interesting to note that Dr Wikland has noticed that when the TSH level is suppressed, thyroid antibodies will be suppressed also, so here is a further argument against TSH as the golden measure of thyroid health (discussed in the first 'Myths' article).

http://www.thyroiduk.org.uk/tuk/thyroid_articles/myths.html


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## bigfoot (May 13, 2011)

Thanks Andros! In addition to stopping Imuran, I also re-started testosterone treatment recently. My basic understanding is that since all of these hormones are tied together, in theory, boosting my testosterone could have increased the need for more thyroid meds, too. So I might be up against a double-whammy; my body wants more to suppress the antibodies, and also more T4 & T3 to keep up with the rising testosterone.

I guess what strikes me as odd is that my FT3 actually looks better than a month or so ago, but all of a sudden my FT4 dropped like a rock, and my TSH increased. (That would *seem* to coincide with the testosterone re-start in mid-February.)

Oh, and no worries about the forthrightness. :tongue0015:


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## kathlav (Mar 26, 2013)

Woah bigfoot,

Started reading your first post from way back Dec 5th 2011,about 8pm this evening have just finished reading your last post 10.45pm ,27 pages, umpteen doctors and specialists don't want to mention the amount of possible ailments and side effects later.

I am astonished you still remain so optimistic, and your willingness to keep trying.
I truly admire that ,and if anyone deserves to to find a solution to this disease/diseases it's certainly you. Because you have worked so damned hard for it.

You have my admiration and best wishes.


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## bigfoot (May 13, 2011)

Thank you very, very much for the kind words and wishes. And I really should give out an award for anyone who can make it through my entire thread! :tongue0013:

In all seriousness, and I know I keep harping on this, but it's really thanks to the folks here like yourself and many others who volunteer their time and advice to help each other. My medical knowledge when I showed up here on the forums a couple of years ago was simply, "Just take your levothyroxine every day and you'll be fine." We all know it's far more complicated than that!

Without a doubt -- all of this stuff takes a toll on your family, friends, relationship, job, and activities, not to mention yourself. Each person has their own way of handling it and their own support network. I'm thankful for a strong family, and also to have the company of such great folks around here.

And whatever your challenges are 'across the pond', I'm pulling for you, too!


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## bigfoot (May 13, 2011)

Had a follow-up appt. yesterday with the doc. We are going to try between 1 1/4 - 1 1/2 grains of Naturethroid and keep monitoring things. Also going to just take it at night, and first thing in the AM (so, say, 1 grain at night, 1/2 grain in early AM). After discussing things at length, she thinks the newly-elevated TPO Ab's could be from stopping the Imuran recently, or else a flare up of Hashi's. Thyroid felt a little full in the office. Also got some natural items to help with anxiety symptoms. And we are also considering a short trial run of a small amount of steroids (~5mg or less), as the low dose really seemed to help me last year, as I discovered by accident. Future testing for Lyme and EBV is on the table, too.


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## Andros (Aug 26, 2009)

bigfoot said:


> Had a follow-up appt. yesterday with the doc. We are going to try between 1 1/4 - 1 1/2 grains of Naturethroid and keep monitoring things. Also going to just take it at night, and first thing in the AM (so, say, 1 grain at night, 1/2 grain in early AM). After discussing things at length, she thinks the newly-elevated TPO Ab's could be from stopping the Imuran recently, or else a flare up of Hashi's. Thyroid felt a little full in the office. Also got some natural items to help with anxiety symptoms. And we are also considering a short trial run of a small amount of steroids (~5mg or less), as the low dose really seemed to help me last year, as I discovered by accident. Future testing for Lyme and EBV is on the table, too.


Sounds like you and the doc are approaching a melting of the minds. She is resistant but clearly willing to compromise and think "just a little bit" outside the box.

This is very very good news. You must let us know how you feel in the coming days and weeks.

Also, what natural supplements? Inquiring minds would like to know!


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## bigfoot (May 13, 2011)

Sounds like magnesium is pretty good for things like anxiety, and apparently I'm the poster child for magnesium deficiency, LOL.

I think the ND is leaning towards the less is more approach, and I can't blame her, since I have weird reactions to darn near everything. She does use the conversion chart from Naturethroid, and is worried I might be a little over-medicated. (I personally feel that the chart is a little low, or the NT absorbs differently, but I am not a doc.) Going above 1 1/2 grains of NT might be a tough sell, but we shall see how the labs and symptoms shake out.

And... drum roll please... we might have some more info soon! I just was able to snag a cancellation appt. tomorrow with the infectious disease doc who specializes in hard-to-diagnose chronic fatigue issues, etc. (Hooray!) Otherwise my regular appt. wasn't until July at the *earliest*. Time to buy a lottery ticket!


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## Andros (Aug 26, 2009)

bigfoot said:


> Sounds like magnesium is pretty good for things like anxiety, and apparently I'm the poster child for magnesium deficiency, LOL.
> 
> I think the ND is leaning towards the less is more approach, and I can't blame her, since I have weird reactions to darn near everything. She does use the conversion chart from Naturethroid. (I personally feel that the chart is a little low, but I am not a doc.) Going above 1 1/2 grains of NT might be a tough sell, but we shall see how the labs shake out.
> 
> And... drum roll please... we might have some more info soon! I just was able to snag a cancellation appt. tomorrow with the infectious disease doc who specializes in chronic fatigue, etc. (Hooray!) Otherwise my appt. wasn't until July at the *earliest*.


Soooooooooooooooooo glad to hear you have the appt. w/the IDD!! Good. My husband and I both take Magnesium Citrate every day and have for years.

Let us know if it helps you feel better; it most certainly should.


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## bigfoot (May 13, 2011)

Thanks! And with that, I am going to go try some right now. This stuff is called Natural Calm and is a powdered drink mix. Yum, yum. :anim_32:

Edit: It tastes like and kinda reminds me of the "Airborne" fizzy cold supplement.


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## bigfoot (May 13, 2011)

Argh! Well, a temporary setback. Made it all the way to this specialist's office, get checked in, got in the exam room, waited 30 mins, and then learned from the CNA that he isn't even in town today! The scheduling dept. made a *big* mix up. On the silver lining side, I do get to have an appt. in a couple of weeks from now instead of waiting until summer.

Hehe, just when you think you have it all figured out! :confused0031:


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## Andros (Aug 26, 2009)

bigfoot said:


> Argh! Well, a temporary setback. Made it all the way to this specialist's office, get checked in, got in the exam room, waited 30 mins, and then learned from the CNA that he isn't even in town today! The scheduling dept. made a *big* mix up. On the silver lining side, I do get to have an appt. in a couple of weeks from now instead of waiting until summer.
> 
> Hehe, just when you think you have it all figured out! :confused0031:


You know what they say about the best laid plans. Bummer! Big inconvenience but it could play out well when it is all said and done. I sure hope so.


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## miguel (Jul 18, 2011)

bigfoot said:


> Sounds like magnesium is pretty good for things like anxiety, and apparently I'm the poster child for magnesium deficiency, LOL.
> 
> I think the ND is leaning towards the less is more approach, and I can't blame her, since I have weird reactions to darn near everything. She does use the conversion chart from Naturethroid, and is worried I might be a little over-medicated. (I personally feel that the chart is a little low, or the NT absorbs differently, but I am not a doc.) Going above 1 1/2 grains of NT might be a tough sell, but we shall see how the labs and symptoms shake out.
> 
> And... drum roll please... we might have some more info soon! I just was able to snag a cancellation appt. tomorrow with the infectious disease doc who specializes in hard-to-diagnose chronic fatigue issues, etc. (Hooray!) Otherwise my regular appt. wasn't until July at the *earliest*. Time to buy a lottery ticket!


Magnesium chloride is the best magnesium supplement.


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## lblowers (Mar 27, 2013)

Bigfoot, you have every ounce of empathy I have. I have no idea how you keep on keepin' on. After 2 1/2 years, I am getting my thryoid OUT!! I have Hashi's and Graves, and have not been able to take any thyroid meds. I am on my second Endo, and between informing myself and his expertise, we decided that taking the thyroid out is really my only option. The thyroid itself LOOKS fine. No goiters. Good blood flow, etc. However, it makes my body crazy. T3's and T4's look fine. TSI is 166. TSH is .0250, and TPOab count is high. After reading your history, I would push to remove the thyroid. Just my opinion. GOOD LUCK!!


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## bigfoot (May 13, 2011)

Thanks for the suggestion on the magnesium chloride!

Yeah, it's hard to line everything up and make the case for a TT. Glad you are getting one! Fortunately, or unfortunately, my TSI results were not sky-high, and my TSH has been leaning towards the hypo side. This is not to say I am not symptomatic, though. So making a case for surgery is a long shot, at best. This will definitely be a pointed question brought up to the infectious disease doc to see what he thinks. I don't *think* all of my troubles are thyroid-related, but they are definitely contributing to things. But, I've also been known to be wrong on occasion.


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## bigfoot (May 13, 2011)

Got in to see the Infectious Disease doc yesterday. Talk about a long appointment -- he spent 1 1/2 hours with me (his usual initial visit). I detailed everything from the start and he pored over my years' worth of lab copies, then did a full physical exam. He doesn't seem to suspect thyroid or Lyme as being the culprit, and is going to order some tests through my doc. Off hand, he mentioned testing IGF, magnesium, doing a detailed blood pressure test (involves standing for 20 mins. or so), etc. He also asked about my dry mouth and whether I had achy joints (yes) and dry eyes (no). He made a passing reference to wondering about something rheumatic going on, and said there was probably room for improvement with hormones, too.

So, all in all, a good appointment with a very smart and caring doc. My favorite part? When I was rambling on with my lengthy story, then I stopped and said I hoped I wasn't burning up his time, to which he responded, "It's OUR time."


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## Andros (Aug 26, 2009)

bigfoot said:


> Got in to see the Infectious Disease doc yesterday. Talk about a long appointment -- he spent 1 1/2 hours with me (his usual initial visit). I detailed everything from the start and he pored over my years' worth of lab copies, then did a full physical exam. He doesn't seem to suspect thyroid or Lyme as being the culprit, and is going to order some tests through my doc. Off hand, he mentioned testing IGF, magnesium, doing a detailed blood pressure test (involves standing for 20 mins. or so), etc. He also asked about my dry mouth and whether I had achy joints (yes) and dry eyes (no). He made a passing reference to wondering about something rheumatic going on, and said there was probably room for improvement with hormones, too.
> 
> So, all in all, a good appointment with a very smart and caring doc. My favorite part? When I was rambling on with my lengthy story, then I stopped and said I hoped I wasn't burning up his time, to which he responded, "It's OUR time."


Whoa!! That is incredible that your doctor said that!! It certainly reinstills a lot of lost faith, does it not?

I am excited for you; I think this is "it", I really do!

You must have left his office with a huge smile on your face and in your heart!!


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## bigfoot (May 13, 2011)

Oh yes, he most certainly restored a lot of lost faith, that's for sure! I am just waiting to hear back and get the green light on which labs / tests need to be run and/or scheduled.


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## Andros (Aug 26, 2009)

bigfoot said:


> Oh yes, he most certainly restored a lot of lost faith, that's for sure! I am just waiting to hear back and get the green light on which labs / tests need to be run and/or scheduled.


And it certainly is about time. So good to hear form you and I will stay tuned for the continuing saga of "bigfoot!"


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## bigfoot (May 13, 2011)

Hehe, thanks Andros! Just got word -- the lab tests being run are, in no particular order: ANA w/reflex, IGF (insulin growth factor), SPEP (serum protein electrophoresis), norepinephrine (must stand up for 20 mins. prior), and catecholamines. Going to try to get those labs done today and get the ball rolling.

Also, the doc wants a tilt-table test done, which sounds like it is a cardiologist's speciality. So I will have to look into setting that one up, as I don't have a cardiologist.


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## bigfoot (May 13, 2011)

And... it sounds like the specialized tests they ran all came back "normal." Message in with the doc to see what might be the next step, and if we are going to do the tilt-table test or not.

In other news, I've been consistently gaining weight over the last month or so, and my heels have started cracking, anxiety has been up/down, neck has been achy at times, brain fog up/down, memory problems, frequent urination, and dizziness & light-headedness made a comeback. Reminds me of being under-medicated in the past, in addition to whatever else is going on currently.

Contacted my ND doc, and she concurs, it's probably time for another set of thyroid labs in the next few days. Those results should be interesting. Honestly, I'm starting to think I have a love-hate relationship with Nature-Throid. But I will hold back judgement until we get the labs. I've been surprised before, LOL. :tongue0013:


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## bigfoot (May 13, 2011)

New lab results are in... TSH has dropped some, Free T4 is up a hair above the bottom, and Free T3 is down a little bit. Thoughts, opinions? I'm going to say hypo based on labs, but I am struggling with taking any additional Nature-throid due to the anxiety / hyper feelings it causes. Potent stuff, especially once I get above the 1 1/4 grains area. Thinking out loud... perhaps this is a time to consider switching from it to something else?

*5/10/13:*
TSH 2.36 (0.4-4.0 mU/l)
Free T4 0.89 (0.84-1.51 ng/dL)
Free T3 3.3 (2.3-4.2 pg/mL)


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## bigfoot (May 13, 2011)

Okay-dokey... saw the new(er) PCP again yesterday for the second time in six months. Wow, what a difference with him being a D.O.! Between this doc recently, my naturopath, and the consult with the infectious disease doc, I finally feel like I have folks I don't have to beg, borrow, and steal from to manage my care. Thank God. When I asked about optimizing hormone levels, trying to get my TSH to around 1.0, and my Free T3/Free T4 boosted up, he was totally on board. He also doesn't seem to mind about things like Armour, compounding pharmacies, etc. But enough of me gushing.

Anyway, this PCP/DO suggested a couple of things to try in regards to optimizing hormone levels. His first suggestion is adjusting the thyroid meds slightly (for example, dropping Nature-Throid to 1 grain and adding in ~25-50 mcg of standalone T4), and the second is switching over to an injectable testosterone (which is the gold-standard anyway). I asked for the ability to do the testosterone injections weekly at home, so hopefully this attenuates the highs/lows of that treatment.

Once we see where those adjustments take us, then he was open to considering a low-dose of Prednisone to see if that helped again at all. Just wants to be sure we consider everything else before bringing out the heavy artillery. And we are still waiting on any updates from the infectious disease doc.

arty0045:


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## joplin1975 (Jul 21, 2011)

Good luck!

As I think I mentioned, my husband had a really rough time with the ups and downs of testosterone injections. Of course, I gave them to him bi-weekly, not weekly, so perhaps that would have been the right course. Anyway, he felt crazy revved up for the first two days and quickly crashed from there.

All these hormones are tricky, tricky things.


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## bigfoot (May 13, 2011)

joplin1975 said:


> All these hormones are tricky, tricky things.


Thanks! And you sure aren't kidding about the hormones. I'm hoping that the injections help raise my levels a bit, especially since it seems that the Androgel kinda waxes and wanes in effectiveness. Worst case scenario, I can always go back to the gel. From what limited amount I've read, the twice-a-week injections that you guys were doing is actually supposed to be a great way to do it, eliminating the massive highs and lows. But we sure are all different!


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## Andros (Aug 26, 2009)

bigfoot said:


> Okay-dokey... saw the new(er) PCP again yesterday for the second time in six months. Wow, what a difference with him being a D.O.! Between this doc recently, my naturopath, and the consult with the infectious disease doc, I finally feel like I have folks I don't have to beg, borrow, and steal from to manage my care. Thank God. When I asked about optimizing hormone levels, trying to get my TSH to around 1.0, and my Free T3/Free T4 boosted up, he was totally on board. He also doesn't seem to mind about things like Armour, compounding pharmacies, etc. But enough of me gushing.
> 
> Anyway, this PCP/DO suggested a couple of things to try in regards to optimizing hormone levels. His first suggestion is adjusting the thyroid meds slightly (for example, dropping Nature-Throid to 1 grain and adding in ~25-50 mcg of standalone T4), and the second is switching over to an injectable testosterone (which is the gold-standard anyway). I asked for the ability to do the testosterone injections weekly at home, so hopefully this attenuates the highs/lows of that treatment.
> 
> ...


Let's all do the Snoopy!!









http://www.nhlcyberfamily.org/special/happydance.htm


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## bigfoot (May 13, 2011)

:tongue0013:Hah... that was great for a laugh, thanks Andros! A little OT, but I see that page has over 9.2 million hits -- wow. Brings back memories of the Hamster Dance, too.


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## bigfoot (May 13, 2011)

:sad0016:

Well, I've been taking 1 grain of Nature-Throid and 25 mcg of Synthroid at night for the last six days. The joint pain and muscle aches after about day one have been downright unbearable. Like wake you up at night unbearable. My knees are swollen, my fingers stiff, and joints feel awful. Popped an extra 1/4 grain of NT this morning after more Advil did nothing, and lo and behold, some relief! Time to talk to the doc again...

I figure it is one of two things:
1) The small drop in NT and addition of slow-acting T4 allowed the antibodies to flare up.
2) Synthroid has fillers or gluten in it that my body doesn't like.

Personally, I'm leaning towards #1, but who knows. Still waiting for injectable testosterone to be approved, but I'm glad I tried adjusting thyroid first, so I know what is causing what. Phew, okay, enough ranting, LOL!


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## Andros (Aug 26, 2009)

bigfoot said:


> :tongue0013:Hah... that was great for a laugh, thanks Andros! A little OT, but I see that page has over 9.2 million hits -- wow. Brings back memories of the Hamster Dance, too.


Oh, I looooooooooooooooooooove the hamster dance!! Ha, ha!


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## Andros (Aug 26, 2009)

bigfoot said:


> :sad0016:
> 
> Well, I've been taking 1 grain of Nature-Throid and 25 mcg of Synthroid at night for the last six days. The joint pain and muscle aches after about day one have been downright unbearable. Like wake you up at night unbearable. My knees are swollen, my fingers stiff, and joints feel awful. Popped an extra 1/4 grain of NT this morning after more Advil did nothing, and lo and behold, some relief! Time to talk to the doc again...
> 
> ...


I am with you on the #1 scenario.

But let me ask you, why the extra T4? Is not the NatureThroid perfectly balanced 4 to 1 ratio? If you have too much T4, it converts to rT3 (reverse) and that can make a person feel horrible.


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## bigfoot (May 13, 2011)

Andros said:


> I am with you on the #1 scenario.
> 
> But let me ask you, why the extra T4? Is not the NatureThroid perfectly balanced 4 to 1 ratio? If you have too much T4, it converts to rT3 (reverse) and that can make a person feel horrible.


Yeah, I am second-guessing myself, too. 

It seemed like I just couldn't get above that 1 1/2 grain mark of Nature-Throid. (Although, in my defense, I briefly tried 1 3/8 grains for a couple of days, and I seemed to tolerate it a little better.) The idea, while good in theory, was to add some extra T4 (a la Synthroid) and that way I'd raise my Free T4 a bit, and continue lowering my TSH, without having to depend on any extra T3 (which I seem to have trouble with at big amounts).

I am thinking it might be a good idea to return to square one, Nature-Throid all the way, and try that 1 3/8 grains mark again for a bit. At least until we try the testosterone injections and see what that brings to the table.


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## Andros (Aug 26, 2009)

bigfoot said:


> Yeah, I am second-guessing myself, too.
> 
> It seemed like I just couldn't get above that 1 1/2 grain mark of Nature-Throid. (Although, in my defense, I briefly tried 1 3/8 grains for a couple of days, and I seemed to tolerate it a little better.) The idea, while good in theory, was to add some extra T4 (a la Synthroid) and that way I'd raise my Free T4 a bit, and continue lowering my TSH, without having to depend on any extra T3 (which I seem to have trouble with at big amounts).
> 
> I am thinking it might be a good idea to return to square one, Nature-Throid all the way, and try that 1 3/8 grains mark again for a bit. At least until we try the testosterone injections and see what that brings to the table.


The injections should bring a lot to the table. The body plays in concert; everything has to be in tune.


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## bigfoot (May 13, 2011)

Aaaaaand... I'm back on Nature-Throid full-time for now. The bad joint aches and muscle pains are almost entirely gone, my eyes aren't aching, and my stomach has pretty much returned to normal. I kid you not, three days ago I could barely move my left knee. Now it is like nothing happened. How only six days on a partial dose of Synthroid, with a tiny drop in NT, could do all of that to me is simply amazing.

:confused0033:


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## Andros (Aug 26, 2009)

bigfoot said:


> Aaaaaand... I'm back on Nature-Throid full-time for now. The bad joint aches and muscle pains are almost entirely gone, my eyes aren't aching, and my stomach has pretty much returned to normal. I kid you not, three days ago I could barely move my left knee. Now it is like nothing happened. How only six days on a partial dose of Synthroid, with a tiny drop in NT, could do all of that to me is simply amazing.
> 
> :confused0033:


This is extremely good news!! Now you "really" can do the Snoopy!!! Whoooooooooohoo.

Keep us in a day by day loop here if you have the time.


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## bigfoot (May 13, 2011)

More updates; saw the ND yesterday and came up with quite a few labs to run to get another baseline... PTH and calcium (for parathyroids), ferritin, rheumatoid factor (for RA), CBC, CMP, the usual thyroid and testosterone labs, including Reverse T3, TPO, and TSI. She also felt my thyroid and wanted to run another ultrasound (been a little less than a year), since it feels enlarged (especially R side), and I have had some aching & tenderness lately.

And I'm about to switch over to injectable testosterone this week. So it will be interesting to see how that goes, too. Not too fond of needles, but if it works better, I will be happy to ditch the gel.

arty0049:


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## Andros (Aug 26, 2009)

bigfoot said:


> More updates; saw the ND yesterday and came up with quite a few labs to run to get another baseline... PTH and calcium (for parathyroids), ferritin, rheumatoid factor (for RA), CBC, CMP, the usual thyroid and testosterone labs, including Reverse T3, TPO, and TSI. She also felt my thyroid and wanted to run another ultrasound (been a little less than a year), since it feels enlarged (especially R side), and I have had some aching & tenderness lately.
> 
> And I'm about to switch over to injectable testosterone this week. So it will be interesting to see how that goes, too. Not too fond of needles, but if it works better, I will be happy to ditch the gel.
> 
> arty0049:


When is the ultra-sound? Please let us know and by the way, have you ever had your Thyroglobulin and Thyroglobulin Ab tested?

Good luck with the injectable!!!


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## bigfoot (May 13, 2011)

Yep, have had the TPO and Thyroglobulin tested a few times before. This time we're only doing TPO, since that is what is usually elevated for me, along with a TSI, just for good measure. I think the idea is just to make sure that there isn't some huge massive flare-up that's gone unnoticed this year.

I'll probably be scheduling the ultrasound sometime in the next week or two. I've had a couple of other ultrasounds in the past, with pretty small nodules. Same theory here -- we're checking to make sure everything looks more or less good-to-go.


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## bigfoot (May 13, 2011)

Just heard from the doctor. Well, strike a few more theories from the list based on recent labs. My PTH and Calcium looked fine, so no problem with the parathyroids. And my RA Factor was fine, so no rheumatoid arthritis. That's good, but boy, I was sure hoping something would stand out.

TSH was sitting at 2.1, and it sounds like my Free T3 was in the upper end of the range, and my Free T4 about mid-range. TPO Antibodies were up a hair to 93. Should know more exact details and numbers when I get the paper copies from the lab. [Edit: Labs added below.]

Switched over from Androgel to testosterone injections over the weekend. Trying to be patient, but so far I feel like I've been tranquilized and am pretty lethargic. Hopefully it kicks into gear soon! And apparently my Estradiol has climbed to 37, whereas it used to hover around 30 or so. One more thing to keep an eye on...


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## bigfoot (May 13, 2011)

Okay, the lab results are in, here are the pertinent ones. Newest in bold below. I dunno if they ran TSI; they were supposed to on the lab slip. I took my usual evening dose (1 grain) of Nature-Throid about 10:30 p.m., then had fasting labs drawn at around 8:00 a.m. the next morning, then took my morning (3/8 grain) dose of Nature-Throid afterwards.

5/10/13:
TSH 2.36 (0.4-4.0 mU/l)
Free T4 0.89 (0.84-1.51 ng/dL)
Free T3 3.3 (2.3-4.2 pg/mL)

*6/22/13*
TSH 2.10 (0.4-4.0)
Free T3 4.2 (2.3-4.2)
Free T4 0.97 (0.84-1.51)
Reverse T3 10.0 (9.0-27.0)
TPO Ab 93.8 (0-60.0)
TSI 97 (<=122) %
Ferritin 112 (22-322)
Calcium 9.8 (8.6-10.3)
RA Factor <10 (<=14)

Total Testosterone 345 (241-827) [on 5g Androgel]
Free Testosterone 88 (47-244)
% Free Testosterone 2.5 (1.6-2.9)
SHBG 20.7 (15.0-87.0)
Estradiol 37 (0-40)

I am surprised to see my Free T3 literally maxed out; yet my stubborn TSH has only dropped a few tenths of a point versus the last labs.

(7/14/13 - Updated above with a few other pertinent lab results.)


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## Andros (Aug 26, 2009)

bigfoot said:


> Yep, have had the TPO and Thyroglobulin tested a few times before. This time we're only doing TPO, since that is what is usually elevated for me, along with a TSI, just for good measure. I think the idea is just to make sure that there isn't some huge massive flare-up that's gone unnoticed this year.
> 
> I'll probably be scheduling the ultrasound sometime in the next week or two. I've had a couple of other ultrasounds in the past, with pretty small nodules. Same theory here -- we're checking to make sure everything looks more or less good-to-go.


Everyone seems to be on top of your health care right now. It's amazing. This was not always the case for you. At least you can find comfort in that.


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## bigfoot (May 13, 2011)

Boy, you aren't kidding! So happy not to get the constant brush-off.

I do have a question for you (or anyone else reading): With my FT3 literally at the top end, obviously I can't really increase my NT dose, for fear of overdoing it and pushing myself hyper, right? So much for trying to suppress the TSH any further, too.


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## bigfoot (May 13, 2011)

Well, my TSI has gone from 31 in Nov. 2011, all the way up to 97 as of last week. Interesting; I wonder if that's just my Hashi's acting up, or the start of Graves or Hashitoxicosis. I know Hashi's patients can have TSI, and it indicates autoimmunity, but I am surprised to see such a big jump. Ultrasound results said everything pretty much looked the same as in past years, except one nodule has grown a little. I'll have more exact numbers and info once I get copies, but that's what I know for now.


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## bigfoot (May 13, 2011)

Updated with recent ultrasound report info below...

FINDINGS:
Right lobe of thyroid gland measures 4.1 x 1.8 x 1.3 cm. Left lobe
measures 3.6 x 1.5 x 1.5 cm. 3 nodules are seen in the left lobe. The largest is
in the mid to lower portion 0.7 x 0.8 x 0.7 cm. The most recent one measures 0.6
x 0.6 x 0.6 cm. The other 2 are 3 mm in greatest dimension and are unchanged.

IMPRESSION:
Mild increase in size is seen over the last 2 exams of the largest nodule.
However do not see new worrisome findings here. The other 2 tiny nodules are
stable.


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## bigfoot (May 13, 2011)

New labs below... interestingly, after beginning testosterone enanthate injections about 6-7 weeks ago, my estradiol has bumped up, and my thyroid hormones have dropped somewhat -- probably due to the increased testosterone (and subsequent estrogen). So we are now tackling the high estradiol, and I am going to try taking an additional 1/4 grain of Nature-Throid. I definitely have been symptomatic; excessive fatigue, more brain fog, irritability, depressed, dry skin again, random weakness, etc. My hunch is that it is a combination of the higher estradiol, reduced thyroid hormones, and maybe side-effects of the injections themselves. It is amazing how complex and connected the body is!

*8/1/13:*
TSH 3.34 (0.4-4.0)
FT3 3.50 (2.3-4.2)
FT4 0.87 (0.84-1.51)
Total Testosterone 654 (241-827)
Free Testosterone 185 (47-244)
% Free Testosterone 2.8 (1.6-2.9)
SHBG 19.6 (15.0-87.0)
Estradiol 43 (0-40)


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## bigfoot (May 13, 2011)

Well, I just started a trial run of low-dose of Prednisone (5mg) today. This was kind of the last-resort, all-out, nuclear armageddon approach that I had hoped to avoid. However, no matter how much supplementing, tweaking, and adjusting that I do, and no matter how many docs and specialists I see, I can't seem to get things back to a good spot. Playing with all of the hormones, medications, and nutrition seemed to get me about 50% of the way there. So the doctors' hope is that this gives me a little stability, and we can go from there.


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## Keba (Aug 11, 2012)

They may be just what your body needs to bring down inflammation. Hope you start feeling better soon.


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## bigfoot (May 13, 2011)

Thanks! And likewise, hope all is going better for you, too...


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## bigfoot (May 13, 2011)

Been away from here for a bit, but wanted to chime back in with an update. Still taking the low-dose prednisone, although that may wrap up depending on doc. Just had labs done the other day, and here are the results. I've been trying to eek my way upwards on the Nature-Throid, and am now up to 1 1/2 grains (1 grain at night, 1/4 in late AM, 1/4 in afternoon). I hesitate to increase to 1 3/4 grains of Nature-Throid just due to the massive amount of T3 that would entail. As it is now, I get plenty of anxiety and still have symptoms, especially fatigue. Just had the stomach flu, too. Whee!

>>I have to wonder if I need more T4 here. I know that FT4 typically runs low when taking a combined T4/T3 medication, but a nagging thought is what about optimizing both FT4 and FT3 independently? Just thinking out loud. Would be curious what folks think.<<

*10/19/13:*
TSH 1.367 (0.4-4.0)
Free T3 3.6 (2.3-4.2)
Free T4 0.98 (0.84-1.51)
Total Testosterone 334 (241-827)
Free Testosterone 88 (47-244)
% Free Testosterone 2.6 (1.6-2.9)
SHBG 18.8 (15.0-87.0)
Estradiol 39 (0-40)

Unfortunately, my testosterone numbers have gone back in the tank after switching from injections back to Androgel. And estradiol has remained high, despite the switch and also taking a supplement to deal the excess estrogen. So this is a coin flip here. I either sit tight and wait to see what improving thyroid numbers do to testosterone, address the high estradiol with RX, or swap back to injections at twice a week instead of once a week. Or some combination of all of the above. Decisions, decisions.


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## Andros (Aug 26, 2009)

bigfoot said:


> Been away from here for a bit, but wanted to chime back in with an update. Still taking the low-dose prednisone, although that may wrap up depending on doc. Just had labs done the other day, and here are the results. I've been trying to eek my way upwards on the Nature-Throid, and am now up to 1 1/2 grains (1 grain at night, 1/4 in late AM, 1/4 in afternoon). I hesitate to increase to 1 3/4 grains of Nature-Throid just due to the massive amount of T3 that would entail. As it is now, I get plenty of anxiety and still have symptoms, especially fatigue. Just had the stomach flu, too. Whee!
> 
> >>I have to wonder if I need more T4 here. I know that FT4 typically runs low when taking a combined T4/T3 medication, but a nagging thought is what about optimizing both FT4 and FT3 independently? Just thinking out loud. Would be curious what folks think.<<
> 
> ...


Personally, I would not tamper adding T4. You are almost there. Maybe another 1/4 grain will do it. FT3 could be just a tad higher.

As you know, I am not well informed about the other hormones so I hesitate to comment.


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## StormFinch (Nov 16, 2012)

I agree with Andros. Remember that T4 is inactive, it's only there to convert into T3. Upping it might cause your body to convert it into even more T3 and leave your FT4 at the low end or, worse yet, convert it into reverse T3 and really throw a wrench into things.


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## bigfoot (May 13, 2011)

Okay -- thanks guys! It's just nice to hear the confirmation from others sometimes.

There is definitely an interaction between thyroid and testosterone, and I wonder if I'm able to handle a little more Nature-Throid due to increasing my testosterone dosage. Or perhaps from trying the low-dose Prednisone, with it undoubtably assisting adrenals and likely suppressing antibodies. Either way, I'm pretty stoked to finally see a TSH with a 1 in front of it!

I've also got to wonder, seeing as how I'm taking 1 1/2 grains of NT at this point, if my thyroid has just about given up the ghost completely. (If true, that would make it nearly six years since formally starting this whole medical debacle, and weird symptoms before that.) If I remember correctly, somewhere in the neighborhood of 1.7 mcg per 1 kg is a full replacement dose of T4-only. So, for me, that would be about 138 mcg of T4 for full replacement. I must be getting close.

Anyway, I think I will sit on this dose for a while longer and see where it takes me. Reflecting back, it's literally taken me a year to move my way up from starting with 1/2 grain. Yowzers!

arty0006:


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## bigfoot (May 13, 2011)

Interesting doctors appointments lately... in a good way. 

Going to be trying some Arimidex to lower my E2 (Estradiol), and see if that helps with the testosterone angle. Meanwhile, the DO suggested trying a small amount of low-dose naltrexone ("LDN") for fatigue. And the ND mentioned keeping the TSH suppressed even further to quiet the antibodies, along with maybe testing for allergic reactions such as mold toxicity. We will also re-do labs in a bit to see what these changes bring. Still having random aches and tightness in my neck near the thyroid, so I honestly believe it is playing some sort of role in my issues.

So all in all, I'm a happy camper to have new things to try! Don't want to get my hopes up too much or put all my eggs in one basket... but if this stuff helps out, I will be frickin' dancing in the streets!


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## Andros (Aug 26, 2009)

bigfoot said:


> Interesting doctors appointments lately... in a good way.
> 
> Going to be trying some Arimidex to lower my E2 (Estradiol), and see if that helps with the testosterone angle. Meanwhile, the DO suggested trying a small amount of low-dose naltrexone ("LDN") for fatigue. And the ND mentioned keeping the TSH suppressed even further to quiet the antibodies, along with maybe testing for allergic reactions such as mold toxicity. We will also re-do labs in a bit to see what these changes bring. Still having random aches and tightness in my neck near the thyroid, so I honestly believe it is playing some sort of role in my issues.
> 
> So all in all, I'm a happy camper to have new things to try! Don't want to get my hopes up too much or put all my eggs in one basket... but if this stuff helps out, I will be frickin' dancing in the streets!


So good to hear from you and you do sound much improved. Many people are very pleased with LDN and I hope it works for you also!!! Have you started on it yet?

Yes; in most cases, keeping the TSH suppressed will put the skids to those antibodies.


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## bigfoot (May 13, 2011)

Thanks Andros! Haven't started the LDN yet, but will be in the next month or so, after addressing the estradiol first. The docs don't want to change more than one thing at a time (and I totally agree). From what limited reading I've done on LDN, it seems to look promising. We're trying it to address the ongoing fatigue, but it sounds like it can work on more than that! In fact, the pharmacist even made mention of watching for thyroid hormone changes, as it's possible that the LDN can reduce the need for so much hormone. (I'm guessing this is by way of lowering inflammation and antibodies.) *fingers crossed*


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## Andros (Aug 26, 2009)

bigfoot said:


> Thanks Andros! Haven't started the LDN yet, but will be in the next month or so, after addressing the estradiol first. The docs don't want to change more than one thing at a time (and I totally agree). From what limited reading I've done on LDN, it seems to look promising. We're trying it to address the ongoing fatigue, but it sounds like it can work on more than that! In fact, the pharmacist even made mention of watching for thyroid hormone changes, as it's possible that the LDN can reduce the need for so much hormone. (I'm guessing this is by way of lowering inflammation and antibodies.) *fingers crossed*


You have a very good doctor; you really do.

No one wanted to do an FNA on those nodules re your ultra-sound report?


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## bigfoot (May 13, 2011)

Nope, although I'd like to think if they get much bigger, they will. Dunno.


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## Andros (Aug 26, 2009)

bigfoot said:


> Nope, although I'd like to think if they get much bigger, they will. Dunno.


I would also like to think that; you are not having quality of life and some of the other issues could in fact fall in line once (if) you get your thyroid out.


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## bigfoot (May 13, 2011)

Been a while since I dropped in -- hope the holidays were good to everyone and here we are now already in 2014!  Now that the turkey and pumpkin pie is eaten, the relatives gone, gifts opened, and trees & lights taken down, it's time to focus back in on improving our health.

Still on 5mg of Prednisone, and so far the Low-Dose Naltrexone has been tolerated okay, and I've been on it for almost 3 weeks. The pharmacist and doc mentioned possible vivid dreams when first starting up; what can I say, it has been free entertainment at night! Since I am on a very low dose to start out, we are upping it a bit to get it into the therapeutic range. (So an increase from 0.5mg to 1.5mg.) Another thing they warned me of was to watch out for a possible swing to the hyper area, which can apparently happen with some folks. If that happens, you supposedly lower your thyroid dose, since you are all of a sudden over-medicated. One can only hope! 

Oh, and here's the latest thyroid labs. Things seem to be somewhat leveled out and stable, which is good. I think the labs from a couple of months ago were very similar. Of note is that the TPO Ab's are still high. So something is still going on here:

*12/18/12:*

TSH 1.335 (0.4-4.0)

Free T3 3.7 (2.3-4.2)

Free T4 1.04 (0.84-1.51)

TPO Antibodies 61.4 (0.0-60.0)

Bottom line from my docs is that nobody really knows exactly what is going on with me, but they are open to new ideas, and one of them suspects it probably has to do with all this fun autoimmune stuff. I tend to agree, and this is where the LDN comes in.


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## Andros (Aug 26, 2009)

Your labs do look improved except for the TPO. I cannot remember; you have had an ultra-sound of your thyroid, correct?


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## bigfoot (May 13, 2011)

Yes, so far I've had a couple of ultrasounds over the last few years. Both showed small nodules and one side of the thyroid being larger than the other. One nodule is a little larger than it used to be, but not over 1cm. Apparently nothing big enough to scare the radiologist or my docs.

Those pesky TPO numbers have something to do with all of this, I suspect. Originally my TPO Ab's were in the 350-ish area when diagnosed with Hashi's. Then, after later starting treatment for another condition (autoimmune hep.) with immune-suppressing meds, my TPO Ab's dropped down to <10! Then, when my liver was deemed healthy enough, the immune-suppressing meds were dropped, and my TPO Ab's rocketed back up to 90. I certainly felt it as well! So the current roller-coaster TPO of 61.4 is an improvement, but hopefully it will get even better from trying this Low Dose Naltrexone.

*Knock on wood* The LDN so far seems to have helped things slightly. It's easier to find words or carry on a conversation, my memory seems a little sharper, and some better sleep at times.


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## bigfoot (May 13, 2011)

Well, apparently, things are never what they seem. New labs below -- this is after a couple of months on the Low Dose Naltrexone. I expected the thyroid numbers to be improving, but either I'm not at the right LDN dose yet (2.0mg currently), or else I need a slight bump up in Nature-Throid. (Or maybe both.)

As far as other stuff goes, my liver numbers (ALT at 64) keep rising slowly, so an appt. with the gastro is in order. On a positive note, testosterone numbers have improved, estradiol is way down (too far, as a matter of fact), and PSA looks fine. I seem to be having one step forward in one area, and a step backwards in another, LOL. 

*2/21/14:*

TSH 3.503 (0.4-4.0)

Free T3 3.7 (2.3-4.2)

T4 6.2 (4.5-10.9) *Note this is not a Free T4, lab made a mistake*


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## bigfoot (May 13, 2011)

New labs in just in... something must be working here (guessing the Low Dose Naltrexone), as I recently ramped down from 1 3/4 grains to 1 1/2 grains, and even that was leaving me feeling a little overmedicated the other day. We're going to try weaning off the Prednisone, which is good news, too.

*4/9/14:*

TSH 1.30

Free T3 3.5

Free T4 1.02


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## bigfoot (May 13, 2011)

Been a couple of months since I added more to my novel-in-progress here:

Still chugging along on Low Dose Naltrexone, continuing to taper off of Prednisone, and doing additional labs to check for metals (zinc, copper, etc.).

Taking 1 3/4 grains of NT (up from 1 1/2 grains), and going to try adding in 12.5 mcg of generic T4 (not my first choice, but it's supposedly gluten-free from Mylan). About time for a yearly ultrasound, too. It will be interesting to see if anything has changed with that. Nutrition-wise, still GF, and doing Paleo as much as possible.

Overall, *knock on wood*, I feel slightly better. Still battling awful fatigue, random brain fog, etc. But I think there's been progress made, too. Better memory, more energy at times, better sleep, and so forth. I'll take it!


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## Andros (Aug 26, 2009)

Substances not found in normal serum (scroll down to autoantibodies)
http://www.thyroidmanager.org/chapter/evaluation-of-thyroid-function-in-health-and-disease/
(Copy and paste into your browser)

Hey there! Unfortunately, ultra-sounds are not always the best tool. Especially if the thyroid tissue is sub-sternal or in an area that just does not show up on ultra-sound. Something is up because you should not have any of those 3 antibodies.

At this point, it would be a very very good idea to see an ENT. I am not at all surprised at your new information. It has been my opinion that you have been flip flopping back and forth for a couple of years and of course when that happens, it is near impossible to address any other secondary or extenuating circumstances.

Let us know what you decide. You certainly cannot lose anything by having an ENT take a look.

And thank you for all the help and support you bring to others on this board.


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## bigfoot (May 13, 2011)

Thanks Andros, as always!

Agree -- I've had my ears open for a good ENT in the area (no pun intended ), as my last experience was a total waste of time & money. My PCPs and other specialists have always been a little stumped, and I've suspected something was not right re: thyroid these last few years. Problem is, I can't really prove it on paper. Nobody wants to interpret my TSI tests at less than 130% of the reference range. My TPO Ab and TG Ab tests are just chalked up to Hashi's. No wild swings in TSH, FT3, or FT4. And my ultrasounds, while they show some small nodules and enlargement of the glands, just don't seem to be weird enough for the docs to get excited. Likewise, in person, there's no goiter or bulging eyes.

So I guess I feel like I'm kinda in limbo-land. The Nature-Throid has helped somewhat, but nothing has been the magic answer. I've been able to tolerate more and more thyroid hormone, so my hope is that the little sucker is just burning out.


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## bigfoot (May 13, 2011)

test post - pls ignore


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## bigfoot (May 13, 2011)

Okay, new labs are in and look promising! This is with 2 grains of NT. If anything, it seems like I am bordering on being over-medicated slightly.

*7/9/12:*

TSH 0.391 (0.4-4.0)

Free T3 4.2 (2.3-4.2)

Total T4 6.2 (4.5-10.9)


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## jenny v (May 6, 2012)

Most important part, how are you feeling?


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## bigfoot (May 13, 2011)

Still don't feel quite "there" yet, and almost like things are still in flux. There have been some recent improvements, such as better temps. (even saw 98.6 again!), less light-headedness, and a little less brain fog. On the flip side, there is still quite a bit of fatigue, some random nausea, and increased motility lately.

(Granted, all of this is probably not all attributable to thyroid, since I have other hormone issues going on, and am still weaning off prednisone.)


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## miltomeal (May 17, 2011)

Bigfoot~

Is the NT a t4/t3 combo med?

I take armour and have felt a little over medicated for a few hours directly after i take the daily dose. When i took it at 5:30am, it was difficult for me to go to work cuz i got all worked up and anxious (overmedicated). I changed the time i take my meds to 2am and by the time i am up and getting ready to go around 7am, the t3 has dissipated a little and i do not have the anxiety or the feeling of being over medicated. Blood tests even show the diference for me when i have different times between taking the meds and doing the blood work. this was an interesting find for me recently!

regards

Milton


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## Andros (Aug 26, 2009)

Oh, those numbers look good. Did you take your NT prior to blood draw or after?

I'll bet you feel much better?


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## bigfoot (May 13, 2011)

I took the Nature-Throid in the evening, so that was about 12 hours prior to fasting morning labs. I've been splitting my dose with 1 grain at night before bed, 1/2 grain before lunch, and another 1/2 grain in the late afternoon. Trying to spread my dose throughout the day, as I seem to notice the T3 "crash" after a few hours.

One of my concerns is that with my FT3 now at the top end of the range (on 2 grains NT), I don't want to slide into being overmedicated. But, I also suspect that as I taper further off the prednisone, my various antibodies will not be as controlled. So having a little extra FT3 will probably help in that regard; heck it might even slide backwards a bit. Same goes for if I switch back to injectable testosterone -- it can cause a spike in estradiol, which in turn blocks thyroid hormone absorption. That probably explains why my TSH suddenly got worse (and I felt it, too) when trying the injectable stuff last year.

Why oh why can't balancing hormones just be easy?!


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## bigfoot (May 13, 2011)

Recent thyroid ultrasound sounds like it was pretty much the same as last year... no details yet, but I'll take the good news.


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## bigfoot (May 13, 2011)

Hi all, been absent from the forums for a while, hope everybody is doing well!  Just had some recent labs done, still waiting on testosterone numbers to come back:

*11/1/14:*

TSH 0.16 *L* (0.4-4.0)

Free T4 0.87 (0.84-1.51)

Free T3 3.9 (2.3-4.2)

These are with me on 2 1/2 grains of Nature-Throid, split up throughout the day/evening. Still taking the Low Dose Naltrexone, too. Testosterone dose has been steady as well for over a year.

I will say that as I slowly titrated up from 2 grains of NT, things seemed to *improve* for a week or two at a time. A little less brain fog, better memory, sweating more, fingers not dry & cracking, less joint pain, slightly easier to drive, etc. You know, the little things we notice on a daily basis.

But... at this point, it seems like I have regressed or gone backwards a bit. Tired & exhausted all the time now, not much energy. Or, perhaps I'm a little over-medicated on NT. Or low on testosterone (waiting on those labs). The million-dollar question is which one, and where do I go from here?


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## Andros (Aug 26, 2009)

Ferritin (should be 50 to 100; the closer to 100,the better) 
http://www.thewayup.com/newsletters/081504.htm
(Copy and paste into your browser)

Good to hear from you! I am thinking that you need your Ferritin tested. Your thyroid labs look good. Do you think that might be a good thing to check out?


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## bigfoot (May 13, 2011)

Hi Andros - had the Ferritin tested a while back and it was actually okay. Go figure!

Got the testosterone labs back from the other day. Things aren't actually that bad, in fact, better than I expected. Always room for improvement with this stuff, but still, not anything glaring considering I've now been on TRT for years.

I'm thinking about asking for another cortisol test, preferably the 4x daily collection again. I seem really jumpy / jittery / anxious at times and I know my rounds of Prednisone probably didn't help in that department. It almost feels like my body can't quite handle all these high-grade hormones being dumped in (Nature-Throid, testosterone gel). Just a random thought.

In the meantime, I throttled back just a hair from 2 1/2 grains NT to 2 1/4 grains of NT daily. All of a sudden I am sleeping better (less insomnia) and the frequent urination has slowed. My hunch is that it was just a little too much T3 for me to handle, despite splitting the doses up throughout the day. The fact that I can even handle 2 1/4 grains now tells me that my thyroid is dying off. I still agree with you that a likely cause of all of this stuff is the various thyroid antibodies roaming around (binding, blocking, stimulating). Maybe with some other autoimmune issue(s) sprinkled in for good fun, too. As we all know, the trick is proving it. It's like trying to hit a constantly moving target!

Hope everything is going good for you and the rest of the gang here!  Been dabbling with some part-time at-home work, which seems like both a good opportunity and a good test of where I stand in relation to all of this medical drama. It can be easy to get complacent and not want to push forward for more answers, but a dose of reality does wonders for that!


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## Andros (Aug 26, 2009)

How long have you been off the Pred? This could have lot to do w/what you describe.

Has your health improved enough so that you can go walking every day? It's good to break the walking up like 20 minutes 2 or 3 times a day. This would get your system working better.

All is well here in Ga.. Our ESS was 2 years old last month; how time flies. How is your GSD??


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## bigfoot (May 13, 2011)

Hmm... let's see, been off the Pred. since late Spring. I did a super s-l-o-w taper down from 5mg and eventually off. This seemed to be a *lot* easier on my system than prior runs with it. Yes, overall, I think things have improved versus a year ago, heck, even six months ago. Family members can see it, so I know I'm not just imagining it.  Lots more to go, but I will gladly take this!

Our GSD is now six, although nobody seems to have told him. (Hah, still acts like a puppy!) Dogs are great, aren't they? Not only good motivators, but plenty of healing support and companionship, too. Glad to hear you are doing well! Stay warm down there in GA, we are battening down the hatches here today for some incoming Arctic weather. Hopefully this misses you!


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## Andros (Aug 26, 2009)

You better batten down. I use that expression all the time and you are the first I know to use it also. Are we speaking a different language or something? ROLF!!

You may have noticed that in many of my posts, I do alert others to the fact that sometimes it takes a good 18 months to 2 years for total healing and still the healing is on-going. Stay the course. Consistency and a dog are key here!

Not sure we are being missed. Down into the 20's as of tomorrow and next week they say rain w/temps in the low 3o's?? Say what? Sounds like snow or ice to me. But we are ready!!

Good to hear that you are doing so well. Actually, it's a miracle. You were a very very unwell person when you first showed up on the board.


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## bigfoot (May 13, 2011)

Andros said:


> Good to hear that you are doing so well. Actually, it's a miracle. You were a very very unwell person when you first showed up on the board.


Thanks for reminding me of that -- after years of dealing with things, you tend to forget where you started from. It was definitely not pretty!

And yes, I do think we are speaking a second language. 

Somewhere, I remember reading about a cancer doc who literally prescribed dogs to his patients. There really is something to it!


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## bigfoot (May 13, 2011)

Been a while, hope everyone is having a great 2015 so far!! 

Wanted to preface this post with some humble words of inspiration -- stay in the fight, lean on your support network, keep asking the tough questions, and be your own best advocate, regardless of the bruised egos that may (or may not) result. Keep moving forward, ignore the naysayers, find the best docs you can, and always have a rough idea of the next step in your ongoing quest for better health. There will be ups and downs. Don't become stagnant, be open to trying new things, don't be afraid to be a polite pain in the you-know-what, and don't accept "this is as good as it gets". Even the smallest improvement is exactly that; an improvement. <Okay, off my soapbox now.> 

After years of dealing with multiple health issues, some thyroid & autoimmune related, and some not, we just recently learned that a *huge* piece of the puzzle was missed several years back. Three words: obstructive sleep apnea.

Mind you, this was missed by the very doc who had ordered the sleep study to begin with. Apparently he did not even bother to read the report that landed on his desk. And when we asked in-person how the study had gone, he went to his office for about 30 seconds, then came back and emphatically stated that my sleep was "fine" (or words to that affect).

Fast-forward to several weeks ago. Thanks to an awesome primary care doc, a supportive & questioning wife, and a sharp sleep doc, we learned that I had stopped breathing about every *two* minutes during that old study!! Needless to say, another overnight sleep study test was quickly ordered, and the results were properly read this time around. The result? A CPAP machine that has me dreaming again, has chased away my bloodshot eyes, and providing quality ZZZzz's. As we all know, sleep affects literally everything, especially our hormones and immune system.

This is why you never accept what you are told at 110%. And if you are wondering, yep, we ditched that doc years ago. :blink:

Now... to catch up on about 4-5 years of missed sleep! B)


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## joplin1975 (Jul 21, 2011)

Well!! That explains a lot.

I hope this is the piece of the puzzle you needed to get back to 100%.


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## bigfoot (May 13, 2011)

Thanks!  Yes, without jinxing myself, I think this will go a long ways towards helping!

In other news, still at 2 1/2 grains of Nature-Throid and holding. Waiting on some labs in a week or two to see where I stand with that stuff and other hormones. Glad my doc didn't freak out about the "low" TSH of 0.16 back in November. Totally understood about keeping it suppressed to keep antibody activity quieted down. Phew!


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