Fluctuating TSH


I'm a woman in my late sixties. I was diagnosed hypothyroid about 15 years ago and my TSH levels have fluctuated badly ever since. I have known only once before what it is to be hyperthyroid when my TSH levels went too low but for most of the time the extreme opposite, hypothyroid symptoms, was my normal, making me feel really unwell even though my blood test results were within range. However, since being diagnosed with smouldering myeloma 14 months ago my doctors have been more understanding and allowed me a thyroxine prescription that produced a TSH level from 0.25 to 0.15, with a normal T3 level, and I've had almost a year of feeling very much better - well, even! I now need treatment for the myeloma but, disappointingly, my TSH level has suddenly decreased in just a fortnight from 0.15 to 0.07, with my T3 level at the high end of the range, and I'm feeling awful again but now with a lot of the symptoms of hyperthyroid! I ought to add that I have decreased kidney function, having lost a

kidney to cancer eight years ago, as well as various other less serious issues

and quite a few allergies! I feel almost in despair as to how to manage all this while coping with chemotherapy as well. Any help, advice or information that I can take to my GP appointment tomorrow would be very much appreciated. Thanks for reading this.

6 Replies

  • Don't worry too much about your TSH level. This is a link which may be helpful. If you are feeling hyper, maybe reduce your dose by a tiny amount.


    I'm sorry you now have other problems to deal with at present and hope you get good doctors who will help with the myeloma

  • Thank you

  • There are usually two reasons for wildly fluctuating TSH : a) you have high anitbodies (Hashi's) b) your doctor is dosing by the TSH only.

    Once you are on thyroid hormone replacement, the TSH is irrelevant unless it goes high. Doctors should not reduce doses just on the basis of a low TSH - which so many of them do. The most important number is the FT3. :)

  • Thank you. Do you know which tests are done for antibodies? I had a 'thyroid ABS' blood test last July which was normal. I've looked it up but I'm still not really sure what test it was and my doctor doesn't seem to know whether I have auto-immune hypothyroid or not! Myeloma is, of course, a cancer of the immune system and, therefore, all my IGs are in disarray!

  • It would either be TPO antibodies, or TG antibodies. 'Thyroid ABS' could be either, I suppose. But the NHS will only test the TPOab, so it was probably that.

    However, one negative test does not completely rule out Hashi's, because antibodies fluctuate. And, besides, you could also have high TgAB, which the NHS refuses to test.

  • Thanks

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