EndocrineWeb Community Advice

High TSH, High T4? What the heck.

From: Cocoa_G - 2 years 49 weeks ago

So, my TSH level has gone down from 4.2 to 3.7 since going on Levothyroxine, though my doctor still wants to see it go below 3 so we're increasing dosage. My last test showed that my T4 level was high though (11.9). I'm getting conflicting reports from two different doctors on how to treat/what to think, since a high TSH usually goes along with a LOW T4, not high. My symptoms are mostly hypo for sure and not hyper -- I'm lethargic, dry skin, pale, gaining weight... I've also developed a tremor in one of my fingers, I have no idea what to attribute that to as my doctors are a bit stumped.

Internet research leads me to question whether this is some other pituitary gland issue -- I believe I finally need to see an endocrinologist, but in the meantime, does anyone here have any similar issues and what have you been able to determine?

Really would appreciate any insight. Thank you.

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Hi cocoa. I'm having some problems myself, which is why I got onto the board. It really helps to connect with others who understand what this is like. Personally, I think you should be under the care of an endocrinologist. I don't think anyone less than a board certified endo doc is a good choice for the care you deserve. There are 2 kinds of endo docs; the one who goes by blood tests alone, and the one who uses a combo of the test results and how you feel. ASK; and go for the 2nd. While you may be at your best with a 3.0 TSH, I feel best between 1.0 and 2.0.

Also, having lived with it for so long, I can tell you, at the beginning, I had all the symptoms you have, plus about 20 more! I never feel hypo symptoms until my TSH is over 4 or 5, and we usually catch it before that and lower my dose.

I'll share a little history with you. I've been hyperthyroid for 12 years, with toxic nodule goiter.

When I first got sick, my GP, who I still adore, said my TSH was just "a little" out of range, and he didn't know what was wrong with me. So began a 4 month nightmare of seeing doctor after doctor, while I got sicker and sicker. I ended up with a thyroid storm, and nearly died. I saw a total of 10 doctors who all misdiagnosed me, or plain didn't know what was wrong. Some doubted anything was wrong at all. I finally dragged myself to an endocrinologist, and had my diagnosis in 48 hours.

I have, until very recently, been very well controlled. I would never trust anyone besides my endocrinologist to treat me, although my GP is copied on everything. (He now fusses over me like a parent).

A high Free T4 does not necessarily have to go with a high TSH. I only had to deal with my TSH for the past 12 years, and now suddenly I have a low T4 (and low TSH), so my doc LOWERED my Methimizole. The problem is that now my TSH is dangerously low, which can only be fixed by increasing the dose, which kicks the T4 out of range again. Like a catch 22.

Really, go to an endocrinologist. You will be in better hands. I'm sure your regular doctor is great, but this is very specialized.