Been a while

Hi there, havent posted in a while and struggled on with levothyroxine. Had to stay on low dosage 50 mcg as I needed to go for gallbladder surgery and had to comply. Felt rotten during this time and the weight gain is getting me down. Op is over nearly 4 weeks and doc increased my dosage to 75 mcg. I felt unwell on this and increased to 100 mcg myself. Doc did bloodtests and rang this morning to say I need to drop down to 50 mcg again. I am so fed up. I asked about T3 and was dismissed completely. I am not sure where to start, either NDT or T3 myself. I am incredibly itchy all over and doc says i am overmedicated. Any input would be appreciated. This morning my T4 is at 20.8 (11-21.7) and tsh 0.07 (0.3-4.5)

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  • Ariadne43 You are not overmedicated, your FT4 is in range. Your GP has seen your TSH below range and panicked. He is dosing by TSH only and that's wrong. TSH is a pituitary hormone, not a thyroid hormone. The Pituitary looks to see if there is any thyroid hormone (thyroxine) and if there is none or too little it sends out a signal TSH (Thyroid Stimulating Hormone) for the thyroid to produce some and the TSH will be high. If there is already enough thyroid hormone - and that includes when we take synthetic thyroxine - then the TSH will be low so no signal is sent.

    With your results, if you feel well then I would refuse to reduce my dose and you can use the following information to support this. Tell your GP that you have contacted NHS Choices recommended source of information about thyroid disorders (which is ThyroidUK) and they have provided the following information

    According to the BMA's booklet, "Understanding Thyroid Disorders", many people do not feel well unless their levels are at the bottom of the TSH range or below and at the top of the FT4 range or a little above.

    Booklet written by Dr Anthony Toft, past president of the British Thyroid Association and leading endocrinologist. It is published by the British Medical Association for patients. Available from pharmacies and Amazon for about £4.95. It might be worth buying, highlighting the relevant section to show your GP in support of not reducing your Levo.

    Also -

    Dr Toft states in Pulse Magazine, "The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l. In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l. This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

    Email louise.roberts@thyroiduk.org for a copy, print it and highlight question 6 to show your GP and endo in support of an increase in Levo.

    If your GP still says you are overmedicated, ask him to test FT3 and if that is in range then you are not overmedicated - as pointed out by Dr Toft.

    By the way, even if you were to reduce your Levo, reductions should be in 25mcg increments, not the 50mcg being proposed here.

  • Thank you so much for your very informative reply

  • Your doctor is following NICE guidelines to 'review and adjust dose' every three to four weeks. You felt bad on 50mg and 75mg, so your doctor now wants to drop it to 50mg?! If you want to see whether 100mg of Levo works for you, try it for a few weeks and see how you feel. You will then have to either 'fess up' to your doctor about taking a different dose, or buy some Levo online, if it makes you feel better and not tell them - or tell them. Most doctors dismiss T3 because they are brainwashed into believing it doesn't work and it is expensive. I have sent you a private message about where to get NDT from.

  • Thank you Scazzoh, much appreciated

  • Do you have Hashimoto's also called autoimmune thyroid disease- high antibodies

    What about vitamin D, folate, B12 and ferritin levels. Post results and ranges. Low results could stop thyroid hormones being absorbed

    Really need to test these, plus to know if your were over medicated would have to test FT3 and FT4 at same time. Only if FT3 was over range would you be need to reduce dose

  • SlowDragon, I have graves disease and got thyroid removed over 2 years ago. My gp only gives me TSH levels and F4. I am going to try and get testing myself, been checking out blood tests but was a bit wary of the pinprick test and doing it myself. I know it will give a better picture of whats going on.

  • If you haven't already seen this, it is a good place to start re: private blood tests:

    thyroiduk.org.uk/tuk/testin...

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