had been stable for about 7-8 years on 200mcg levo. About 4m ago my family practioner said I needed to lower my dose d/t my T3 and TSH. He changed it to 175mcg, then 2m later again (d/t labs) said it needed to be lower to 150mcg. Now 2m later I have low blood pressure, even orthostatic hypotension even. Also feel an increase sensitivity to cold and have horrible horrible leg/ feet cramps 4 out of 7 nights a week. Just recently seen my doc and he says my T3 and TSH are in the mid normal range. I am at a loss, I have never had any kind of ortho hypotension or these very bad leg cramps. I am 43 and I have been taking thyroid levo for about 18 yrs. My doc even checked all kinds of labs because of the cramps to check sodium,mag, calc everything. Labs show all is well, but all is not. The only change I have had is this steady decline in my Levo. Can you give your view on this? Please....
Unfortunately many doctors don't understand that TSH is affected by so many variables that it is totally inadequate as a diagnostic with which to medicate a hypo patient. Even though it is supposed to accurately reflect levels of the biologically active thyroid hormones, Free T3 and Free T4, it cannot be shown to correlate well with either, much less with symptoms, which are even more important.
Scientific studies have shown that Free T3 correlated best with hypo symptoms, while Free T4 and TSH did not correlate at all. Many of our members report that symptom relief required Free t3 adjustment into the upper third of the range and Free T4 adjustment to around the middle of the range.
Further, when taking thyroid meds, frequently a patient will have suppressed TSH levels. This does not mean that you are hyper, unless you do have hyper symptoms, due to excess levels of Free T3 and Free T4, which you do not have.
A good thyroid doctor will treat a hypo patient clinically by testing and adjusting Free T3 and Free T4 as necessary to relieve symptoms, without being constrained by resultant TSH levels. Symptom relief should be all important not just test results, and especially not just TSH. You can get some good insight into clinical treatment from this letter written by a good thyroid doctor for patients that he sometimes consults with from a distance, after an initial evaluation and tests. The letter is then sent to the participating PCP of the patient to help guide treatment. In the letter please note this statement, "the ultimate criterion for dose adjustment must always be the clinical response of the patient."
Somehow you are going to have to get your doctor to understand this, or find a new doctor.
Also, if you haven't been tested for Vitamin D, B12 and ferritin, then you should make that happen, along with Free T3 and Free T4. When test results are available, if you will please post results and their reference ranges members will be glad to help interpret and advise further.
Thank you for your insight, I am calling a Endo on Monday for a new patient exam. I have always just used a family doctor but i think its past time for an expert. I will post new labs when avail. All my current doctor tested was Free T4=1.44 and TSH=0.73. No Vitamin D,B12, ferritin or Free T3.
Being an Endo does not assure a good thyroid doctor. Many specialize in diabetes, not thyroid. Many have the "Immaculate TSH Belief' and only use TSH to diagnose and medicate a hypo patient. That does not work. Others that test beyond TSH then use "Reference Range Endocrinology", by which they will tell you that a thyroid test that falls anywhere within the Range is adequate. That is false. The ranges are far too broad due to being established erroneously.
If you will tell us your location in Georgia, perhaps a member can recommend a good thyroid doctor based on personal experience.
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