Thank you for that link - I certainly will search his info - I appreciate it!
Hi,
Not sure if you've visited Dr. Nicolson's Autoimmune expert forum .. he's an expert on CFS and the Gulf War Syndrome and visits us every few months:
http://www.medhelp.org/forums/Autoimmune-Disorders/show/358
You may want to write to him or search the archives, too for info.
C~
LM,
I agree and I've always believed that in many cases of patients being given the CFS diagnosis, that there is an underlying health problem that was not discovered or even possibly multi-problems. On the other hand, true CFS or CFIDS, I believe to be a disorder of combined neurological, immune dysfunction and endocrine problems and I believe the same to be true of fibromyalgia, which medical sources say has 75% crossover similarities with CFS, the main distinction being body pain (FMS), versus fatigue (CFS) as the prominent symptom.
Some people are not tested for ALL POSSIBLE deficiencies and this can result in CFS/FMS diagnoses, when the real problem is a deficiency of D, E, B12, B6, Folate, Carnitine, magnesium, potassium, electrolyte imbalances, etc......... Some CFS patients that are claimed to have been "throughly evaluated", were not in reality.
A very intriguing but sad in many ways - subject. I've done extensive search on it and can understand why the CFS/FMS subject is frustrating even for many doctors. I just hope they don't burn out on research that as you said will being those "deserved answers someday". I'm with you on that!
But "settling on thinking I had CFS" realy is not an answer either.
Seems like when the medical community places one of the many acronym 'labels' on some heath disorder, that its suddenly OK to not find the root cause. And CFS seems to point in so many possible directions too. That and Fibro deserve an answer some day.
Hey, thank you for that! I will go the thread right now.
I actually read-up on Thyroid Hormone Resistence years ago before finally settling on thinking I had CFS, comorbid to my hypo/hashi's.
I'm going back to searching that again, starting with that thread - thanks for the lead and prompt in that direction!
I was curious as to whether you had done any research on Thyroid Hormone Resistance (peripheral). If you were able to tolerate thyroid meds in doses sufficient to raise your FT3 to double the upper limit (plus 23!!!) without major hyper symptoms, it could very well be an issue. THR can also cause myopathy.
Here's a link to a thread that discussed THR a while back:
http://www.medhelp.org/posts/Thyroid-Disorders/Thyroid-Hormone-Resistance/show/1202364?personal_page_id=287727#post_5499329
It contains references to other sites that might be interesting to you. Unfortunately, the poster kind of disappeared. It was a very enlightening discussion, and she seemed to have a lot of information on the subject. I've tried to contact her to continue the discussion, but with no luck.
I just saw your post come in - I was distracted during my posting - I work and post between open time slots.
See my above post, as I went into detail on how long the high dosing has been administered. I will add that I believe the double highest-normal level could not have been occurring more than a coulpe or few months and I was likely only a little above normal before that, based on past T3 tests I've had done.
Another thought is that my D and E supplements for deficiecnies of these, I started about three months ago, may have potentiated my dose!
Thank you.
laura1967,
Thanks so much for replying.
Strangely enough, I don't have classic thyrotoxic symptoms like tachycardia or weight loss (in fact I have difficulty losing - moderately overweight) however, I can't imagine it not having affected me in some way because my last blood retest for T3 was as follows:
FT3 result - "903" (range 210 to 440) ----[This was twice highest normal + 23!)
Total T3 result - "365" (range 76 to 181) --- (twice highest normal + 3)
Before this, I was kept at highest normal on T3 and occassionaly, just slightly above normal but TSH was always kept at near undetecable, such as "0.005".
The reason I agreed to this dose-level for about 6 years is because my T4 will actually drop slightly below normal if my TSH even rises to between 0.5 and 1.0. I felt this indicated that I instead needed some T4 added rather than increasing the Armour - as you suggested but none of my doctors would agree to do so, claiming it makes for too much opportunity for instability of the treatment. I had even though years ago about switching to T4 but I feel that patients used to getting T4/T3 combo, need to continue it or risk falling into symptoms by switching to T4 only (i.e. depression) or their bodies may be slow in converting T3, due to it having been supplied for so long. Certainly this might not be the case but was something I didn't want to risk.
This is not a knock at doctors in-general, I assure you but in the area I reside-in, finding good doctors is an incredible challenge. I've heard many other people in my area express this same opinion - so I'm far from alone in it.
Right before I came to see your reply, I got to post this to Dr. Mark Lupo at the other thyroid forum and will be eager to see if he believes my myopathy (muscle weakness) might be related to the over-dosing. I'm also treated for D and E vitamin deficiencies and feel these play a factor as well but I certainly don't want an additional cause or contributor to that symptom!
Once seeing my Armour OD, my Dr. had me cut back from 2.5 to 2.0 grains and said she will blood retest me in 3 to 4 months but even this seems like a strange timing, since I feel 8-weeks would be better, so that it can be adjusted even further if-needed.
Sorry to ramble but do appreciate your replies.
How long did your FT3 level remain double the upper limit? Were your symptoms extremely hyper at that level? How high was your FT3 before all your hypO symptoms were relieved?
A lot of times you will find patients that have to add some synthetic T4 med to your lowered dosage of armour, to even out the ratio. Armour doesn't have the correct ratio of T4 to T3, for a lot of people. Simple fix though to add some t4 and still enjoy the benefits of armour.
Biggest question though is why your Dr let your Free T3 level remain so high??? Are you having any heart issues from this?