# Have I lost the forest by studying all the trees?



## laff66 (Mar 9, 2012)

Hopefully some will have the patience to read what is likely to be a messy post, but I figured I better summarize what I've been doing for this to make any sense.

Oct 2011 - Started 50 of levothyroxine after having my testosterone checked due to low energy and poor mood. They found the following:
TSH: 5.2 (.4-4.5)
FT3 3.3 (2.3-4.2) 
FT4 .99 (.8-1.8)

Dec 2011 - Didnt really feel any different so increased to 75 of levo. Still not much improvement but that was as far as that doc wanted to go due to TSH being normal and the following labs:
TSH: 2.96
FT4: 1.28
FT3: 3.5
changes: BM's became much more pleasant to be polite!!

Feb 2012 - Found another doc who switched me to 60 of armour and ran a TPOab test which were 803 (<35 being normal).

Mar 2012 - The 60 really didn't do much either so we went to 90 of Armour.
Apr 2012 labs: 
TSH .03 (.4-4.5)
FT4: 1.2 (.8-1.8)
FT3: 4.4 (2.3-4.2) *took armour in morn, blood draw at 4pm (approx 9 hours)*
changes: 3 days after starting 90, woke up one morning with NO BACK PAIN, which had not happened in about 5 years. It did not return until the next day - unheard of!! Loose BM's started to return after several weeks on Armour though??

If you've read this far and kept up with the dates, here's where I think I went nuts. At beginning of April, I felt a minor twinge in my knee which was crazy swollen and painful the next morning. This lasted for 3 weeks, at which point I got scared that I was having the reaction Dr. Broda Barnes says the majority of people with Hashi's who take armour will have: a worsening of the autoimmune response due to the body treating armour just like the natural thyroid hormone. For that reason, and the fact that my mood/energy wasn't great, I switched to 150 levo on my own (I know I know, not good to do). That was 4/26/12. I also started 2000 of D3 on 4/24.

5/5/12: Went gluten free based on stool test from enterolab. THAT NIGHT the knee swelling DRAMATICALLY improved. No idea if related to gluten or not. Keep in mind I had stopped armour and started levo 9 days prior, as well as the D3.
5/9/12: Again woke up with no back pain. This lasted for 3 days!!! I cannot express in words how significant this was. I also had a few days of good mood.
5/12/12: Realized how crazy it was to think armour was causing this and had not gotten doc permission, so went BACK on armour 90.
5/13/12: back pain slowly returning. Mood crappy, energy still not there.
5/15/12: back to levo 150

As of today, I'm still on levo 150 and have clouded up my mind so bad I don't know what to do. I figure I've put in a month on the levo so might as well go get some labs done before I switch again. Prob next week, as that is when I'll run out of levothyroxine.

After ALL that, I guess the input I'm looking for is: 
-are little spurts of improvement followed by worsening a normal progression
-is it possible I really am reacting to armour
-do I just need to give the meds MUCH longer to see if they help?
-Ive read many times that FT3 should be 75% of range, now I'm over. Is it normal to raise it up and still feel bad?

I'm still gluten free (3 wks) but dont feel any better other than the 3 days w/o back pain (HUGE!!) I know I screwed up by changing so much stuff at once. I'm wondering if I just don't even know what normal is now since this bad mood and low energy thing crept up on me over about 15 yrs. 
Any advice would be greatly appreciated, or even just reading all this!!


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## Andros (Aug 26, 2009)

laff66 said:


> Hopefully some will have the patience to read what is likely to be a messy post, but I figured I better summarize what I've been doing for this to make any sense.
> 
> Oct 2011 - Started 50 of levothyroxine after having my testosterone checked due to low energy and poor mood. They found the following:
> TSH: 5.2 (.4-4.5)
> ...


LHM! (Lord have mercy) Okay, the FREE T3 is over the top and since you dosed in the morning and took labs in the afternoon and since you had increased intestinal motility, I would say you were on too much Armour.

That said, if you want "anything" to work, you have to ride one horse.

And I am not sure exogenous Vitamin D is a good thing for you.

You may be interested in this article.
Vitamin D
http://www.eurekalert.org/pub_releases/2009-04/arf-vdm040809.php

Sadly, changing your meds around so often causes me to give you the only logical advice I can think of and that is to start all over again w/titration. You may also have to stop taking any thyroxine for about a month to get "baseline" labs for starting over. Labs every 8 weeks as per protocul.


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## allowingtoo (Mar 31, 2012)

I wouldn't say stop taking it for a month. I get weird after not taking any for a couple of days! It's dangerous not to take any thyroid meds - you shouldn't drive if you have been prescribed thyroid meds and you go off of them for any reason....


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## laff66 (Mar 9, 2012)

Yeah, the Vitamin D thing confuses the heck out of me! I've seen that same article on many different sites and don't know what to make of it. I've also read tons of accounts of thyroid patients (many with Hashi's) that have had much success with vit D supplementation in resolving pain issues. Mine was at 38, with a range of 30-100. I've also read many docs prefer thyroid patients to be above 50. I guess its like everything else, I don't know what to believe!

On the suggestion that I had too much armour, is that possible if I wasn't having any hyper symptoms? And on the intestinal issues, they weren't anything out of the ordinary for me. In fact, that would resolve every time I got prescribed a higher dose as we were titrating, and would then revert back to my normal. I think that was related to gluten, but its interesting that it would get better briefly, then fall back to pre-thyroid med status.


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## bigfoot (May 13, 2011)

My personal opinion, but I would beware the info on Vitamin D being a negative thing. Go figure, I can't find the article now, but the Vitamin D being bad for you was debunked somewhere as far as the science behind it.

That being said, I was given 10,000 IU of Vitamin D to take each week last year and made it about a month into it. It seemed to make things flare up worse. But there were other changes going on then, too, so I can't put it all onto that. Right now I'm taking between 2,000 - 4,000 IU a day.

I think everyone is right, you probably have to stick with one thing for a while.


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## Andros (Aug 26, 2009)

allowingtoo said:


> I wouldn't say stop taking it for a month. I get weird after not taking any for a couple of days! It's dangerous not to take any thyroid meds - you shouldn't drive if you have been prescribed thyroid meds and you go off of them for any reason....


I should have said w/doctor's supervision. Thanks!


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## Andros (Aug 26, 2009)

laff66 said:


> Yeah, the Vitamin D thing confuses the heck out of me! I've seen that same article on many different sites and don't know what to make of it. I've also read tons of accounts of thyroid patients (many with Hashi's) that have had much success with vit D supplementation in resolving pain issues. Mine was at 38, with a range of 30-100. I've also read many docs prefer thyroid patients to be above 50. I guess its like everything else, I don't know what to believe!
> 
> On the suggestion that I had too much armour, is that possible if I wasn't having any hyper symptoms? And on the intestinal issues, they weren't anything out of the ordinary for me. In fact, that would resolve every time I got prescribed a higher dose as we were titrating, and would then revert back to my normal. I think that was related to gluten, but its interesting that it would get better briefly, then fall back to pre-thyroid med status.


I should have said don't do anything w/o your doctor's supervision. Some things ARE NOT better left unsaid. Sorry about that omission.

We never advocate doing anything w/o doctor's supervision.


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## laff66 (Mar 9, 2012)

You're right, and I know that, but this was not done without a ton of research and thought. I eventually showed him the journal with all this in it, but prior to changing anything, I called the drs office, called again, faxed in the Dr Broda Barnes info I was concerned about, then called AGAIN. When I still didn't get a reply I was NOT happy and went ahead and changed some things anyway. 
Thanks for the replies.


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## Andros (Aug 26, 2009)

laff66 said:


> You're right, and I know that, but this was not done without a ton of research and thought. I eventually showed him the journal with all this in it, but prior to changing anything, I called the drs office, called again, faxed in the Dr Broda Barnes info I was concerned about, then called AGAIN. When I still didn't get a reply I was NOT happy and went ahead and changed some things anyway.
> Thanks for the replies.


Oh, I meant the advice I was giving; not what you did. LOL!!


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## bigfoot (May 13, 2011)

Sometimes you have to keep pressuring the docs, and that goes far beyond thyroid problems. It's funny to walk into a new doctor's office, lay out everything that has happened or various diagnoses over a few years, and have them take it carte blanche.

The parts they missed were the many days of frustration and run-arounds with other doctors (putting it mildly), the weeks of following possible leads and advocating for yourself, the months of research, and the years of dealing with a disease process that isn't kind to most folks. And no one doctor has all of the answers -- it's like a big puzzle with lots of little pieces. Take one piece from here, one piece from over there, and yet another from over there. Eventually it starts coming together in some semblance of a picture.

Good for you for being persistent. I wish I had been more that way when I started down this journey. If this doctor you're seeing doesn't want to at least have his staff call you back with info, maybe it's time to move on. Don't spin your wheels too much on any one person. We are a demanding group as thyroid patients, and many docs probably shake their heads, but that doesn't mean we should just be left blowing in the wind. If a doc isn't up to the task I wish they'd just say so ahead of time, instead of sending people on a wild-goose chase so they can squeeze in another 15-minute appointment for $200.

Okay... <soapbox mode off>. I think this was the long, sleep-deprived way of giving you a high-five. Booyah.

hugs3


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## laff66 (Mar 9, 2012)

Am I wrong in thinking that hyper symptoms would be completely obvious and different than hypo? Can being on too much medication cause the blah feeling and low energy I am experiencing? It's pretty much how I felt before taking meds, but along the way there have been some good days. I always thought hyper meant heart palps, jitters, etc. If hyper can cause some similar symptoms, maybe we just didn't give the lower doses enough time?


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## joplin1975 (Jul 21, 2011)

Yup, you could be wrong. Hyper and hypo symptoms often cross over. You can be exhausted when hyper because your body is going 100 miles an hour and driving itself to the point of exhaustion.


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## laff66 (Mar 9, 2012)

Geez. Just did some reading on hyper symptoms. I didnt start keeping track of my symptoms and all the changes until several months into this, and I wish I had. Its amazing how it all runs together and how hard it is to remember. Looking back at what I did write though, there were days when I felt a little bit breathless for no reason, one morning where I woke up with my heart beating hard, and many nights when I could feel my heart beating too hard right when I laid down to go to sleep. They were never a problem, and my HR and BP were always normal so I figured oh well. I don't know that those things necessarily meant I was going hyper, but it sure gives me EVEN MORE to think about. 
If there's anybody new to all this reading through posts, KEEP A JOURNAL from the first day you start medication!!!


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## bigfoot (May 13, 2011)

There were times I would have swore that I was going through a hypo phase, yet my labs were near perfect. Same goes for feeling hyper. Without the TSH, Free T4, and Free T3, you are just left guessing where your levels are.

One thing that served as a good rule of thumb was intestinal motility. In general, if I was hitting the bathroom 4, 5, 6, or even 7 times chances are I was either swinging hyper or had just increased the thyroid dosage. Same idea for really dry, cracked skin on the heels -- in general I would be hypo or headed there at this point. Anything else just seemed like a mystery.

You are absolutely right about keeping a log. Track vitals here daily on a spreadsheet (medications & dosages, AM weight, AM & PM pulse, AM & PM blood pressure, random blood sugars, and brief notes about the day) and now with a year's worth of data to look back on trends and patterns start to emerge. Plus, should you ever need it, it's an excellent way to "CYA" if you encounter a stubborn doctor, disability application, etc.

Same goes for all thyroid labs and dates. Keeping track of TSH, Free T4, and Free T3, along with corresponding thyroid medication levels makes for an interesting chart. It definitely yo-yo's up and down.


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## laff66 (Mar 9, 2012)

Just saw this quote from Dr. Woliner in an article linked by Andros:

"It is important to realize that if a patient has thyroid antibodies, all bets are off. All thyroid blood tests from that point on are thrown off, including the Free T3. In that case, one definitely has to go by symptoms to decide the correct level of thyroid medication".

I'm still waiting for blood tests to find out what I've done to myself with the 150 of levothyroxine, but given the quote above, and in the event that FT3 is still high, or if doc puts me back on 90 of armour and it gets high over the next few months, is it still possible that I could need more? It just seems so strange to me that with med changes or dose changes I've had a few occurences of great improvements, followed by worsening, almost like I'm trying to sputter back to life. I don't imagine too many docs would increase meds given a high FT3 (other than Dr. Woliner), but just wondering if anyone has run across that scenario themselves.


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## CA-Lynn (Apr 29, 2010)

I'm here to tell you that my rheumatologist told me that for most of his patients with autoimmune diseases, it's almost unusual for them NOT to have a below normal Vitamin D.....in spite of megadoses of Vitamin D. I proved him right.

When I was on megadoses [and before I read the link to the article Andros posted] of Vitamin D it only exacerbated every single ache and pain. To put things in perspective, I have a number of arthritic autoimmune diseases, in addition to Hashi's. You really don't know pain until every joint is killing you and you spent a good deal of time in an orth surgeon's office getting cortisone injections in each joint and epidurals. Once I stopped taking the megadoses of Vitamin D everything started to calm down. My Vitamin D runs 5-15 points below the normal range and now I feel fine, no thanks to the megadoses.


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## laff66 (Mar 9, 2012)

That's good to know, thanks! I guess I could cut that out and see what happens. The whole vit D thing is possibly even more confusing than the rest of this!! There are so many others on this site that have had pain subside with increased D?? Plus I had the HUGE improvement in my back pain after a few weeks on D3. I doubt that's long enough to matter but who knows...


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## midgetmaid (Jul 22, 2010)

My aunt has hashi's and lupus, and her D is low so her doc has her take 2000 units daily. She feels much better on it and swears her pain is much worse when she runs out and is off it a few days.

My endo has me take 2000 units, also, and she is happy with my D labs now.

Renee


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## CA-Lynn (Apr 29, 2010)

Not sure if your aunt is making the correct association. Vitamin D stays in the body for some time.....so it's not likely she'd feel the effects after she's not used it for a few days.

Just a reminder about excessive vitamin D: Side effects of excessive amounts of vitamin D are generally minimal and include nausea, constipation, weakness, weight loss, and poor appetite.


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## midgetmaid (Jul 22, 2010)

CA-LYNN, my aunt is an RN. I don't know the exact amount of time, but she says she feels a big difference.

Renee


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## laff66 (Mar 9, 2012)

Finally got labs done after going from Armour 90 to Levothyroxine 150. Either I respond differently to the two meds, or the conversion chart thats all over the internet is wrong, because it had much more of an effect than the Armour.

TSH: .01 (.4-4.5)
FT4: 1.9 (.8-1.8)
FT3: 5.2 (2.3-4.2)
TPO: 626 (<35)

Clearly, this suggests hyper, but what about some of the prominent thyroid docs (Woliner, Barnes, etc) that say ALL labs are unreliable with Hashi's and you must treat on symptoms. I really didn't have any typical hyper symptoms, so how will I ever know if we always adjust meds based on these labs?

note: I finally came to my senses the day after having the above labs done and went back on the 90 armour and will stay that way for a few months at least. Doc also had me start Rhodiola for mood and energy??


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## laff66 (Mar 9, 2012)

Just an update for anyone who may be reading this thread down the road....
I just had a routine follow up lab drawn and my calcium was high. I mention this only because above I was asking questions about vitamin D. In some cases (and maybe in mine), a low vitamin D level can be protective as described here:

http://www.parathyroid.com/low-vitamin-d.htm

Doc says 99% likely that a 10.7 calcium level in a 45 year old means parathyroid tumor. Anyone else had this? Supposedly not related to thyroid in any way other than being right next to each other and sharing a name. 
Luckily they're rarely cancerous and a quick fix if removed. Can make you feel tired, irritable, depressed--sounds familiar....
Orrrr--he said that Vitamin D supplementation can increase Ca levels in the blood. Whether or not its a parathyroid tumor or excess vitamin D that caused it for me, high calcium will make you feel awful so if you're supplementing, probably a good idea to monitor your calcium levels.
I've also seen several articles that list meds and supplements that can increase blood calcium levels. Two that are on there are thyroxine and vitamin D. Anyone else had increased levels of calcium while on thyroid meds?

Also, for some reason my FT3 and FT4 dropped quite a bit while on 90 armour and he upped me to 120. Great.


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## CA-Lynn (Apr 29, 2010)

Funny. My friend had hypercalcemia of just about the same level. It was caused by taking too many Vitamin D supplements. She does not take thyroid medication.


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