# My life is falling apart



## Enigma (Jun 13, 2011)

Sorry to always complain... I just don't know who else will understand.

Recap: Had labs 11/3
TSH .92 (.34-4.82)
FT4 .87 (.59-1.61)

TSI: 3.7 H (<=1.3)

One week later, went to the ER 11/11
TSH 4.92 (.4 - 3.4)
FT4 1.3 (.9 -1.7)
FT3 2.7 (2.0-4.4)

TPO in July 869 (0-9)

ER also did Iron and B12 labs, but every doctor has ignore these and not commented:

Iron Level 44 (28-170)
Total Iron Binding H 482 (261-478)
% Transferrin Saturation L 9 (15-45)
Vit B12 level 407 (200-900)

Ferritin was checked back in May, 81 (10-160).

ER doc recommended MRI, catecholamines test, and complete ANA

Went to see a new endo for a second opinion on Wednesday (my dad had called him previously to tell him about what was going on). He (and his partner) seemed promising over the phone. Well, no. He said I need more meds, but can go lower if I really want to. I am obviously hypo and TSI doesn't matter, regardless of symptoms, because we look at things "empirically". My other symptoms seemed neurological to him, and he "doesn't do that". He ordered an ACTH test because "obviously someone put adrenal issues into your head" (i.e. his partner when my dad had talked to him on the phone- too bad I forgot to tell him that). I was taking IsoCort for the past two weeks and asked him how that would effect the test. He told me he is a MEDICAL doctor and doesn't know anything about things that are not scientific, and that IsoCort was bogus so it obviously wouldn't effect the test. He wouldn't even look at the list of vitamins/supplements I brought in.

Anyway, his recommendation was to take 100mcg levo. He said all of my problems are from thyroid and it wouldn't be worth doing any more tests until the thyroid is stable.

He did the ACTH test that afternoon and it made me so dizzy, headache and chest pains. I told the nurse who was monitoring me, and she went and told the doctor, and he told me if I am having chest pains to go home and call my PCP. HE SENT ME OUT OF HIS OFFICE WITH HORRIBLE CHEST PAINS AND SO DIZZY I COULD HARDLY WALK. He didn't care. The nurse was really worried, but there wasn't much else she could do when he said to go home.

My original endo who said it's all in my head and that my second test (which ended up being the one in the ER) would come back normal, told me yesterday just to take 100mcg. When I asked his nurse to ask him why my labs had changed so much in one week (which he said they wouldn't), he wouldn't answer. He told me to then just continue with my .075mcg levo I'm on. He wouldn't tell me why he thought my labs changed so much when he promised me they wouldn't. And he doesn't want to see me back in the office, just get labs again in January.

My other doc who was going to be the one I stayed with for thyroid care (a holistic internal medicine doc) refuses to treat me anymore because she is not sure what to do due to my TSI and fluctuating labs and symptoms. So the one I was going to stay with isn't willing to treat me.

And in the meantime, I am an absolute physical wreck, I've lost 15lbs in the past 3 months while eating like crazy, I have no muscle strength, so it is hard for me to even walk up stairs, I can't drive safely because I fall asleep, I am alienating my family and friends because I can't even function enough to think let alone be around them, and I have missed so many days of work. And no one can give me any guidance on what to do for a next step. Take more meds? And feel worse when my body decides to rebel? Take less meds and feel worse like I did in the spring? Make sure there are no neurological problems, tumors, etc.? Or just lock me up because nothing seems to work and it's not worth dealing with me?


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## Marathon Man (Aug 31, 2011)

Good luck to you. My only suggestion is to do what I did during what was the worst part for me: Make getting well your top priority. Schedule multiple doctors appoinments and get as many medical opinions as you can. Eat right, rest and take care of yourself. Force yourself to exercise.


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## Andros (Aug 26, 2009)

Enigma said:


> Sorry to always complain... I just don't know who else will understand.
> 
> Recap: Had labs 11/3
> TSH .92 (.34-4.82)
> ...


My dear, I just got done reading a similar story from someone else re her doctor. This is so frightening.

As you know, we now have a couple thousand members and you started a new thread so I do not have your whole history handy w/our previous communications.

So.........................have you had RAIU (radioactive uptake) or at the very least and ultra-sound?

Your labs are skewed because of the binding, blocking and stimulating antibodies.

At this point, I seriously would recommend that you see an ENT.

I am sorry this is happening to you. I was treated the same or worse at times; totally denigrated by so many doctors that to this day I have a hard time trusting any doctor, dentist etc.. I almost died from a thyroid storm from untreated hyper/Graves'.

Don't want this to happen to you. Talk to your dad about your seeing an ENT. At this point and of course I am not you but I am thinking you would be better off to just get your thyroid removed.

And I worry about you taking thyroxine replacement. I "really" do.


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## Enigma (Jun 13, 2011)

Yes, sorry, I forget to keep them in one thread.
Yes, ultra sound, normal, just heterogeneous, small 4mm nodules.

No RAUI, no one has recommended it.

Can you just "Get" your thyroid out? Or do you need an endo do recommend it?

I am ready to check myself into the hospital because I can't take feeling like this anymore and told to go home. It is horrible.


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## Enigma (Jun 13, 2011)

I am also worried about Hashimoto's Encephalopathy given the neurological symptoms I am having. But no one seems to care.


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## Enigma (Jun 13, 2011)

Here is my last experience- http://www.thyroidboards.com/showthread.php?t=4507

No longer seeing that doc who gave me cytomel since she is not comfortable treating me.


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## Octavia (Aug 1, 2011)

Enigma said:


> He wouldn't even look at the list of vitamins/supplements I brought in.


Enigma, I am sorry you are feeling so bad.

If you are taking a long list of vitamins and supplements, maybe those are "messing with" your thyroid meds. Can you stop some or all of them, at least the non-essential ones, at least temporarily, and see what happens?

Keep fighting for yourself...


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## Enigma (Jun 13, 2011)

I can, and have, stopped quite a few. Most of them are just vitamins that were normally in the multi-vitamin I used to take before I realized I shouldn't be eating gluten and dairy products. Some of the are B-complex, vitamin D, magnesium citrate, calcium citrate, and then a couple of herbs. I had a doctor ok them (the one I was seeing before she didn't feel comfortable anymore) and am now taking them under the advisement of my acupuncturist (she is a practicing pharmacist as well, so she tells me what will interact and what side effects they may have). She is VERY cautious and has never told me to take anything, and usually tells me to stop things. So I am VERY confident in her (she has been the only one through this whole thing that has pretty much predicted how I would respond to things or side effects they'd give me). If she could be my doctor, I'd stick with her.

I could stop some of them, but some of them I need and were suggested by doctors. So it's hard to know. There's no middle ground with docs - either some recommend many different vitamins/supplements, or they totally don't even "believe" in them so don't even pay attention when you try to tell them what you are on. And because I'm so exhausted and brain dead, I'm not really able to sort through my reactions well. Plus, I tend to react several hours later, not right away, so I can never be sure if it was something I took, or something I ate, and whether it was the filler or the vitamin itself.

I now need my .075mcg levo refilled by the endo... so I am trying to get him to refill it with a compounded version so I can rule out being allergic to any fillers. I feel horrible within an hour of taking my thyroid meds, and my stomach is all messed up, and within 3 hours my tongue is swollen and burning. So, maybe with it compounded and making sure there are not milk or gluten ingredients in there, I can prove to my doctor that it is the medicine itself, not the fillers, that is making me react?

I hate to use myself as an experiment, but it seems the doctors won't listen unless I'm almost dead.

The one good thing is that I start with a new PCP on Monday. I was tired of my old one always telling me I was anxious and never LISTENING to me, then referring to my husband as "reinforcement" when he went to an appt with me when I was too sick to drive myself. So I found a female locally that I am switching to (always been going to males, time to see a female since I am one myself). My dad called and spoke to her yesterday about what was going on because I am just too exhausted and burned out to even try to advocate for myself to any more doctors. She was shocked at the responses I've had, she asked him if I have had an MRI and other neurological testing, couldn't believe that doctors keep telling me I'm anxious without looking at everything, nobody has done a really thorough workup and said to my dad, "Wow, she must feel so frustrated and horrible." My dad said she was great to talk to and she came to the conclusions herself without my dad telling her what he thought needed to be done. So, at the very least, maybe she will listen a bit more and be a better "clearinghouse" for symptoms and also be more thorough and careful with referrals. And, after talking to my dad, she had her office move my new patient appointment up from Dec. 8th to this coming Monday, which, I think, says a lot.


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## Octavia (Aug 1, 2011)

Ooohh....this new doc sounds good! Looking forward to hearing how it goes.


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## Andros (Aug 26, 2009)

Enigma said:


> Yes, sorry, I forget to keep them in one thread.
> Yes, ultra sound, normal, just heterogeneous, small 4mm nodules.
> 
> No RAUI, no one has recommended it.
> ...


Go find an ENT; see what he/she has to say. Sometimes you can "just get it out"; I know many who have. And guess what? Many of those many were shocked to find out that they indeed had cancer re pathology.

Sending many hugs and prayers your way. I do wish I could send a good doc your way but alas!


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## Andros (Aug 26, 2009)

Enigma said:


> I can, and have, stopped quite a few. Most of them are just vitamins that were normally in the multi-vitamin I used to take before I realized I shouldn't be eating gluten and dairy products. Some of the are B-complex, vitamin D, magnesium citrate, calcium citrate, and then a couple of herbs. I had a doctor ok them (the one I was seeing before she didn't feel comfortable anymore) and am now taking them under the advisement of my acupuncturist (she is a practicing pharmacist as well, so she tells me what will interact and what side effects they may have). She is VERY cautious and has never told me to take anything, and usually tells me to stop things. So I am VERY confident in her (she has been the only one through this whole thing that has pretty much predicted how I would respond to things or side effects they'd give me). If she could be my doctor, I'd stick with her.
> 
> I could stop some of them, but some of them I need and were suggested by doctors. So it's hard to know. There's no middle ground with docs - either some recommend many different vitamins/supplements, or they totally don't even "believe" in them so don't even pay attention when you try to tell them what you are on. And because I'm so exhausted and brain dead, I'm not really able to sort through my reactions well. Plus, I tend to react several hours later, not right away, so I can never be sure if it was something I took, or something I ate, and whether it was the filler or the vitamin itself.
> 
> ...


Oh, man.........................it bodes well that this PCP has bumped you up in the queue!! Truly!

RAIU; that would be good. See how it goes. I pray this is "the" one!


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## bigfoot (May 13, 2011)

Enigma said:


> I am also worried about Hashimoto's Encephalopathy given the neurological symptoms I am having. But no one seems to care.


I mentioned this as well during my last endo visit and it wasn't well received; neither was asking about the TSI test or an ultrasound. Like you, I was told I was hypo, with no need for further testing, and it was left at that. My doc was clearly upset. So now I am at a standstill -- I can sympathize, it is truly frustrating. Obviously not everything is related to the thyroid, but I wish docs would spend a little more time looking in detail at obvious and closely-connected problems first.

Hashi's is an autoimmune disease that has your body attacking itself. If it was affecting any other organ I have to believe there would be an uproar in the medical community. But because it's the "thyroid" it seems to get very little thought or acceptance. Which is truly a shame, because we all get cast off as goofballs when there is a legitimate physical problem.

Sending positive thoughts your way and wishing you a great appointment with the new PCP! Sometimes it just takes a second (or third, or fourth) opinion and a fresh look at things. In the meantime hopefully you can take some time and get to relax a bit over the holiday.

hugs3


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## Andros (Aug 26, 2009)

Enigma said:


> I am also worried about Hashimoto's Encephalopathy given the neurological symptoms I am having. But no one seems to care.


I care; we all care! Know that and keep the faith. It just has to turn around for you!

http://elaine-moore.suite101.com/hashimoto-s-encephalopathy-a3823


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## webster2 (May 19, 2011)

We do care. This thyroid business has to be the toughest test in my life, so far. Hang in there.


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## I DClaire (Jul 31, 2011)

I cannot add a word of advice to what has already been said but your frustration and desperation are so obvious. There was a time when I was secretly keeping a diary solely about my health because I honestly thought I might not survive. I went so far as to tell my husband if I died to insist on an autopsy. He asked why and I said I wanted someone to KNOW what happened to me!

I read somewhere recently that when we get so totally discouraged that we think God has forgotten about us is when he is the most with us. I think sometimes when we're so totally discouraged that no one understands what we believe about our health concerns, when it seems like answers don't exist OR we're not going to survive long enough to find them may be the time when answers and improvement are closer than we dare believe.

Keep fighting for yourself. In all sincerity, I agree 100% with Webster2 - thyroid disease has been the toughest battle I've ever fought for my health. I get so discouraged I want to give-up sometimes but I've just recently begun to believe things are finally getting better.

There's a little sign hanging on a shelf in my daughter's old bathroom that says something to the effect that you've got to kiss a lot of toads before you find a prince. Trust me, I've found finding really good doctors to be harder than finding a prince!!


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## bigfoot (May 13, 2011)

It is so easy to get discouraged and bogged down in things. A friend of mine who has dealt with so much has a great saying; "Better to burn out than rust out."

I recently had an in-depth job interview, alas on a day when I was feeling awful and sick. The room had a clock on the wall, under which someone had stuck a piece of paper with one word written: "Breathe..."

And here's another quote...

"Life should not be a journey to the grave with the intention of arriving safely in a pretty and well preserved body, but rather to skid in broadside in a cloud of smoke, thoroughly used up, totally worn out, and loudly proclaiming "Wow! What a Ride!" (Hunter S. Thompson)

:hugs:

BTW, here's something to put a smile on your face:


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## Enigma (Jun 13, 2011)

I need some guidance on what thyroid-related labs I should ask for when I meet with my new PCP tomorrow (if she seems like she will listen, that is).

Reminder: my last labs, with one week between due to regular testing then ER visit, were ALL over the place.

Since starting meds I have become sicker and sicker, with mostly hyper symptoms. I am having neurological symptoms, too, so I will be asking for more tests in that area as well. But for now, what other thyroid, or thyroid-related tests would be good to ask for given my hypersensitivity to the meds and the high TSI results?

I've had these done:

--TSH, FT4 every six weeks (TSH has fluctuated 4 points in one week, and FT4 was up and down at the same time)
--FT3 twice (both lower than 50% of range, last time about 25% of range with no T3 meds)

--TPO in July (869 on 0-9 range)
--TSI two week ago (3.7 on a <=1.3 range)

--Ultrasound in August (heterogeneous thyroid with two small 4mm nodules)

I know there is something about TSH-R (receptor antibodies)? And also TBII? I also want to ask for an ACTH to check for adrenal issues that might be interfering with thyroid treatment. I'd also like her to check for sex hormone levels (no one has ever done this) and vitamin levels.

If you know of any good specific tests, and the correct names (not sure I have the right names- they may help!) I'd really appreciate it!! I have an appointment tomorrow at 10:30am.

Thank you!!


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## Andros (Aug 26, 2009)

Enigma said:


> I need some guidance on what thyroid-related labs I should ask for when I meet with my new PCP tomorrow (if she seems like she will listen, that is).
> 
> Reminder: my last labs, with one week between due to regular testing then ER visit, were ALL over the place.
> 
> ...


These are the basic; tried and true.

TSI (thyroid stimulating immunoglobulin)http://www.medicineonline.com/topics/t/2/Thyroid-Stimulating-Immunoglobulin/TSI.html,TPO (antimicrosomal antibodies) TBII (thyrotropin-binding inhibitory immunoglobulin), Thyroglobulin Ab, ANA (antinuclear antibodies), (thyroid hormone panel) TSH, Free T3, Free T4.

You can look this stuff up here and more.........
http://www.labtestsonline.org/

Thyroglobulin and Thyroglobulin Ab. Very important.


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## Enigma (Jun 13, 2011)

Met with the new PCP yesterday. Wasn't "amazing" but she ordered tons of test, which no one else had done. She was very good to talk to, and listened, and was nice. Didn't tell me it was all in my head. She really had no idea what was going on (but who does) but she was not against ordering tests and digging deeper, not just saying it's nothing.

I convinced her to order the other thyroid antibodies tests (told her it would help the endo she wants to talk to about my case to narrow stuff down) and also got her to do FT4 and FT3 tests. She did acknowledge that my labs say hypO and my symptoms most definitely say hypER.

Still waiting for a bunch to come back. But this is interesting:

TSH 2.51 (.34 - 4.82)
FT4 1.07 (.59 - 1.61)

I had taken Cytomel for 4 days (last time I took it was last Wednesday). This was prior to figuring out the TSI antibodies and that I might be actually swinging hyper. Not sure if that would effect the labs a few days later. I was only taking 5mcg total.

Within the last 3 weeks, I've had 3 thyroid tests. 
TSH from .92 (.34-4.82), to 4.92 (.3-3.8), to 2.51 (.34-4.82). 
FT4 from .87 (.59-1.61) to 1.3 (.9-1.7) to 1.07 (.59-1.61)

She has switched me to Tirosint at my request. She wanted to put me on brand name, but I figured since we're making a switch, I'd like to do as hypoallergenic as possible. I react to many different things in meds, and I can see absorption changes in my other meds when they switch generic brands on me. So Tirosint is still just T4 but in a gelcap, with only the meds, gelatin, water and glycerin in it. At least we could rule out fillers as making my stomach irritated and messing up absorption.

But I'm still worried about my numbers fluctuating and my crazy symptoms. No one seems to be able to tell me anything about having TSI, and why my symptoms are so HYPER and messed up.


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## Andros (Aug 26, 2009)

Enigma said:


> Met with the new PCP yesterday. Wasn't "amazing" but she ordered tons of test, which no one else had done. She was very good to talk to, and listened, and was nice. Didn't tell me it was all in my head. She really had no idea what was going on (but who does) but she was not against ordering tests and digging deeper, not just saying it's nothing.
> 
> I convinced her to order the other thyroid antibodies tests (told her it would help the endo she wants to talk to about my case to narrow stuff down) and also got her to do FT4 and FT3 tests. She did acknowledge that my labs say hypO and my symptoms most definitely say hypER.
> 
> ...


I hope you get the results and ranges soon; I and others here will be anxious to have a look.

Leery about you taking any thyroxine replacement at this time but................I am not the doctor so take that w/ a grain of salt.


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## Enigma (Jun 13, 2011)

I hope I get them soon, too. I am going to call this afternoon. However, we're getting 12 inches of snow right now so I'm not sure how many people will be in the office!

I'm leery of being on anything right now too... that's why I didn't UP my meds, like the endo wanted me to. Just didn't feel comfortable. SOME things have become better, like my skin problems I was having and my hair falling out. It's just that some things have become worse. I don't know if I want to go back to where I was in the spring unmedicated, but don't know if I can handle this. I'm stopping a bunch (well some here and there) of supplements to see if that helps (which I think it has the past couple of days). I'm trying to monitor how I respond to various things and see if any of those things could have been making things worse. I've also started on a chinese herbal blend to even out moods and such. I didn't really want to try it earlier, but at this point I don't know what to do. My acupuncturist (and chinese herbalist, and practicing pharmacist) has been the ONLY person who has accurately predicted my responses to meds and helped me with my reactions, and figuring out what is going on. If she could be my doctor, I would just go to her. So I trust her with the herbs, and she knows how EXTREMELY sensitive I am to things, and she NEVER gives me things to try, usually tells me to stop things, so for her to recommend this (After seeing her for over 4 months) may be good. And if it's not, she is easy to get a hold of and will tell me to stop it right away. Since starting it on the weekend, though, I've been doing much better. So hopefully this will help until we get something figured out.


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## bigfoot (May 13, 2011)

Enigma said:


> I'm stopping a bunch (well some here and there) of supplements to see if that helps (which I think it has the past couple of days). I'm trying to monitor how I respond to various things and see if any of those things could have been making things worse.


Excellent idea. I, too, was on quite a few supplements over the summer under the care of a naturopath. While they seemed to improve some areas, others got worse. Lab values for things like TSH turned worse, but strangely FT3 and FT4 improved. Like you, I stopped the supplements and a few things have cleared up.

Hope you get those labs ASAP! hugs3


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## I DClaire (Jul 31, 2011)

bigfoot said:


> Excellent idea. I, too, was on quite a few supplements over the summer under the care of a naturopath. While they seemed to improve some areas, others got worse. Lab values for things like TSH turned worse, but strangely FT3 and FT4 improved. Like you, I stopped the supplements and a few things have cleared up.
> 
> Hope you get those labs ASAP! hugs3


I've done the same thing. I decided back when I felt like I wasn't sure where I was going with Synthroid that I the few supplements I'd gone back to taking might somehow be involved. Maybe they were - maybe they weren't...but the only way I knew to maybe identify/eliminate a problem was to start over, being relatively sure I knew for sure how each supplement effected me or effected the Synthroid.

I'm not taking anything right now except Synthroid, Vitamin D (per doctor's orders), calcium, and my blood pressure medicine and I'm doing well. I decided I was actually tired of Viactive so yesterday I bought Citracal and I am SO sorry - each tablet is as big or bigger than a bullet and hard as a rock. It hurt like the ****ens swallowing one last night.

I just got to thinking also that if my liver was efficiently processing Synthroid then it probably wasn't efficiently processing much of anything else and I've truly felt better not taking so many different things.


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