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  • VanIsleGal
      Post count: 66

      I am disappointed my TSH stayed identical (.04) the past 5 weeks after taking 30mg Tapazole in the beginning then going to 20mg a day. This is my 3rd time on Tapazole and it has never not worked well before. Has anyone else experienced this before? I know the doctor will call me on Monday to tell me what dose to continue taking. I have decided on the surgery route, but last time it took over a year to stabilize, so surgery is a ways off I think. I also asked for a bone density scan which I have in a few weeks. Anyone with fractures years after diagnosis?

      Kimberly
      Online Facilitator
        Post count: 4290

        Hello – It’s actually quite common for TSH to remain suppressed; hopefully, your doctor is making dosing decisions based on free T4 and T3 and *not* TSH. In fact, the latest guidance from the American Association of Clinical Endocrinologists and the American Thyroid Association notes that: “Serum TSH may remain suppressed for several months after starting therapy and is therefore not a good parameter to monitor therapy early in the course.”

        Hopefully, you will get some other responses on your question on fractures post-treatment.

        Take care!

        VanIsleGal
          Post count: 66

          Thanks for this Kimberly! Yes my Free T4 was halved in a month, so almost in the normal range and Free T3 is high. The antibody test was sent to Vancouver so won’t be in for about 10 days. I get the other test results online in a few hours. I didn’t know about the TSH not moving, so feel better now knowing it is quite typical!

          Bobbi
            Post count: 1324

            TSH is sort of a “running average.” So it lags behind the actual thyroid hormone levels. But if Free T3 is high, that would help to explain the lack of movement in the TSH.

            Hope you are feeling better soon.

            VanIsleGal
              Post count: 66

              It has been .06 for at least 4 months, not .04. When I asked the endo why this hasn’t moved at all he said it wasn’t detectable, that it is lower than .06 but the test doesn’t detect lower. That is why having Grave’s 3 times I have been at .06 so often! I thought this might be helpful for others!

              Carito71
                Post count: 333

                Hello everyone. I’m still learning so I don’t have any answers but I do have a question.

                What happens then when the FT4 starts to get lower but the FT3 is still high? Do they keep you on Methimazole? I guess what I’m trying to figure out is, what would they treat you with if the FT4 gets to where it needs to be but the FT3 is still high? Is that possible? If continuing with Methimazole, wouldn’t one get too low on FT4? Is that they case where they would treat one with “block and replace” … I think that what I’ve read they call it.

                Still learning. Please forgive me if my question doesn’t make sense.

                VanlsleGal, I hope you find the answer to your question soon.

                Caro :)

                Harpy
                  Post count: 184

                  Regarding supressed TSH, my partner had low/no (<0.05) TSH for around 5 years before it finally kicked in, this is irrespective of the fact that her FT3 & FT4 stabilised within the 2 year mark while taking PTU, the last 3 tests show her TSH has been tracking normal for the last 6 months.
                  It is believed supressed TSH is caused primarily by TSH receptor antibody activity in the Pituitary gland, the antibodies simulate the effect that TSH would have making the Pituitary think TSH levels are high, hence it does not produce any.
                  Just like antibody activity in the thyroid runs seperately to the antibody activity in thyroid eye disease, likewise with the pituitary and elswhere in the body.
                  For some the TSH recovers quickly, indicating antibodies are clear of the Pituitary, for others it takes much longer.
                  There are TSH receptors throughout the body, not just in the thyroid, but it is not clear why antibodies are more active in some areas rather than others and it seems to differ with different individuals.

                  Carito71 wrote:
                  Hello everyone. I’m still learning so I don’t have any answers but I do have a question.

                  What happens then when the FT4 starts to get lower but the FT3 is still high? Do they keep you on Methimazole? I guess what I’m trying to figure out is, what would they treat you with if the FT4 gets to where it needs to be but the FT3 is still high? Is that possible? If continuing with Methimazole, wouldn’t one get too low on FT4? Is that they case where they would treat one with “block and replace” … I think that what I’ve read they call it.

                  Still learning. Please forgive me if my question doesn’t make sense.

                  VanlsleGal, I hope you find the answer to your question soon.

                  Caro :)

                  Your question does make sense.
                  In short, yes sort of,
                  Kimberly has mentioned the concept on another thread where medication dose is maintained and a small amount of thyroid hormone is prescribed just to keep T4 at normal levels. This situation of in range or low T4 and high T3 is quite common in early stages of GD treatment and the above approach may be particularly beneficial to help get stability as soon as possible. I’ve heard it described as “Add Back” treatment, rather than “Block & Replace” where Thyroid production is shut down entirely with anti thyroid medication, then a supplementary dose of hormone is given. Block & Replace was/is apparantly used quite successfully in Japan, but has not been used extensively elswhere.

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