confused with no answers

[lme63]

My TSH is within "normal range" but my T4 is always low. I cannot find any data to support this with a diagnosis of hypothyroidism. Do you have any suggestions?

[Barb135]

That's a great letter and it would be wonderful to hear what they might  have to say.  I mean, if ATA doesn't respond to problems that we deal with, who else would?  I hope you'll keep sending that letter -- or maybe if we all copy it into a letter of our own and send it to them, they might get tired of seeing it and finally addressing the issue???

Just a thought --- thanks so much for what you do for us....

[gimel]

From your post, I thought you might be interested in this letter that I sent to the Amer. Thyroid Assn.    Note that I have sent twice, and never got any response.  Big surprise.


After having gone through years of not being treated for hypothyroidism, because my TSH was 4.97 and thus "normal", I was very pleased to note that the AACE had finally recognized that the range was incorrectly determined.  After removing some suspect hypo patients' data, and recalculating the range, they recommended  it be lowered and narrowed to .3-3.0.  Six years after this recommendation, why is it that most labs and doctors still do not recognize the change and still use the old range?  Since doctors also over-rely on TSH as the gold standard for thyroid testing, multitudes of hypo patients are still being told they are "normal" and do not get treated.  Is the ATA doing anything to encourage the medical community to change this practice?   If so, why is it taking so long?

My second concern is that doctors predominantly rely on TSH in determining a patient's thyroid status.  Why is this, since TSH is a pituitary hormone that is affected by so many variables, including even the time of day when tested?  Why not promote more widespread use of the actual thyroid hormones that are biologically active (FT3 and FT4) and that largely regulate metabolism and many other body functions?  From studies I have seen and much personal experience, TSH does not even correlate very well at all  with  hypo symptoms.  The test that has been shown to correlate best with hypo symptoms is free T3.  Yet there are very few doctors that order a FT3 test as a matter of course, and some that refuse to order one at all.

When FT3 and FT4 are tested,  the ranges are so broad that patients with overt hypo symptoms will usually still fall in the lower end of the current range.   As a result they are also told they are "normal" and receive no treatment.  Why haven"t the reference ranges for FT3 and FT4 been corrected like TSH, to exclude suspect hypo patients?  If this were done, these ranges would likewise be raised and narrowed,  comparable to the new range for TSH.  I'm sure that some would say that the range is just a reference range, that as you approach the lower end of the range, that the probability of being hypo goes up and that in those cases, doctors look further to determine if medication is advisable.  I agree that this should be the case but I assure you it isn't. Labs and doctors interpret results within the reference range as "normal" and don't want to go any further.   As a result of all this the above  misunderstanding and misapplication, millions of patients go untreated and remain miserable with their hypo symptoms.

Is the ATA doing anything to raise the awareness  of these problems among the medical community so that we hypo patients can look forward to some positive changes?  If you are not, then I cannot imagine any other organization that could do the work necessary to coordinate changing the awful mess that exists in the area of diagnosis and treatment of thyroid patients. Your response will be greatly appreciated.






Also, here is a good article  about over reliance on TSH, and the need to treat a patient by symptoms, by adjusting FT3 and FT4 levels.


http://www.hormonerestoration.com/Thyroid.html

[TamraW]

My TSH was always 'normal', 2.69 and 2.74. Anything above a 2.0 with hypo symptoms and/or low FT3/'FT4 is considered hypo and you should be receiving proper thyroid hormone treatment.

My Anti-TPO antibodies for the hypothryoid disease, Hashimoto's is a 221, and anything over 35 is above normal. So you see, TSH can be unreliable in diagnosing hypothyroidism.

Request these tests:

FT3
FT4
TSH
Hashi antibodies bloodwork:
Anti-TPO
TGab

Even with 'normal' TSH is you feel hypo, you should be treated. It won't hurt your TSH to drop .5-1.0 in order to get your FT3/FT4 within range.

Here's a website that lists good endos state-by-state so you can find one who actually knows thyroid and doesn't mainly treat diabetes. A good thyroid specialist knows to treat the frees.

http://www.thyroid-info.com/topdrs/
:) Tamra