Hashimotos and Underactive Thyroid

I have had these both for about 28 years, what I've noticed is my levels are always wrong. My TSH is high and then my (I think T3 or T4) is normal. Then they increase my thyroxine level and then I am getting too much thyroxine and they lower it again and it is never actually normal. Maybe 2 of my tests in 10 years have been normal.

2 Replies

  • shineygirl

    The reason you cannot get a stable blood test is because the keep adjusting your doses. It shows a complete misunderstanding of the use of thyroid hormones. No matter if the took a blood test every hour of the day your TSH will probably not be identical.

    Doctors have been told to that the TSH is the one level in which to make a diagnosis and after that they try to keep your TSH within the range. That's wrong, most of us need a TSH around 1 or below or suppressed, whichever makes us feel well.

    You will have to now learn with the help of the forum to expand your knowledge as after 25 years, I just don't know how you've managed at all to have a reasonable life. It must seem like a life-sentence never knowing from one test to another whether or not you're ever going to feel well again.

    If you are due a blood test, or are feeling unwell, make an appointment for a new blood test for your thyroid hormones. (If you've had one recently ask for a print-out (we are entitled to it but some make a nominal charge for the paper/ink) for our own records and so that you can post if you have a query. Make sure they include the ranges which are in brackets after the result.

    If you need a test, don't take levo on the morning of the test (allowing about 24 hours between your last dose and the test which should be as early as possible and fast (you can drink water). Take levo after test. Also ask for Vitamin B12, Vit D, iron, ferritin and folate as we are usually deficient in these too. Ask your GP for a Full Thyroid Function Test, which is TSH, T4, T3, Free T4 and Free T3. (He might say you don't need all of these and the lab may not even if he requested if your TSH is in range. If that's the case you can get a private pin-prick Free T3 blood test by post. Details below. The Free T3 is important as that's the one we need in all of our cells and Levo (T4) should convert to sufficient but sometimes we aren't able to do this.


    Read this question/answer dated

    Read the question dated October 5, 2000 just for information.


    Ask any questions and members will respond if you are not sure about anything.

  • Hi shineygirl, several things can affect TSH levels which is only a pituitary test. The pituitary determines how much thyroid your body needs, what level is should have and how much thyroid it can actually handle. Of course, if you are on a medical dose, that can have an impact. At times your adrenal glands will try to slow down everything if you are stressed. You need good ferritin, folate and B12 for your pill to work so there can be affects from that.

    Can you post your test results with reference ranges? Normal is not preferable, we aim for OPTIMAL. stopthethyroidmadness.com/l...

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