Is it normal to be diagnosed hypothyroid and then be taken off thyroxine after 3 months?

I was feeling horrendous around Christmas, went into town shopping and would have to go home after about 15 mins due to nearly falling asleep and exhaustion, couldn't function at work etc. I had a blood test, it came back as underactive 11 on the scale whatever that means i'm not sure. I was put on 50mcg thyroxine immediately and was feeling much better. 3 months later I have a follow up test and she claims its all normal now so ive been advised to come off all medication completely, just as I was starting to feel better. I'm aged 22. hope I don't start feeling awful again.

5 Replies

  • Hi mandypopsie - no it is not usual to come off thyroxine - usually once diagnosed as hypothyroid you need to take it for life.

    Can you remember if it was your TSH or FT4 that was 11? If it was TSH then this was high - indicating hypothyroidism. If it was FT4 it is probably low (need the range to be certain), again indicating hypothyroidism. One being high and the other low is normal in hypothyroidism due to the negative feedback loop.

    Do you have your most recent results - the ones she says show you are normal and need to come off medication? If so please post them on here together with the ranges. Your results are probably looking more normal due to taking the thyroxine. Once you come off it you will probably return to feeling ill I'm afraid.

    I think you should go straigt back to your doctor or preferably see another one and ask to be put back on thyroxine. It is likely that you will need an increase too, as 50mcg tends to just be a starting dose.

    Clare xx

  • Hi clare :) thanks so much for replying. Its all new to me so im not particularly knowledgable about it all. I think yes it is TSH has gone from 11 to 5-6 since taking thyroxine, she says only above 10 is serious and the other bit is 0.07 which she says is fabulous too. I thought surely it has only gone normal because of the thyroxine. She did an antibody test and said i didnt have hashimotos so i dont need the meds anymore not at my age :/ xxx

  • If your TSH is still 5-6 then you are still under-treated. Most people feel better when their TSH is less than one, so right at the bottom of the range, or even suppressed.

    Slightly confused by what is 0.07 though? Could that be TSH? If so that might change things a bit.

    Most hypothyroidism in the developed world is caused by Hashimoto's, but not all. I don't have antibodies either but am most definitely hypo and need thyroid hormone replacement.

    Might be best if you could get a printout of your actual results and then post them on here. Xx

  • Once you are on thyroxine and your symptoms start to subside then NO you should not come off it just because the numbers add up!! Tell your doc you are not going to be treated by the numbers and you will NOT agree to lower your medication!!

  • It's almost universal that once you start on thyroid meds, it is a lifelong process. But

    I don't want to be too cut and dry, though, because if you don't have hashimoto's and you might just be iodine deficient and vitamin D deficient and B12 deficient and have low iron, any of these could be interfering with your T4 conversion so maybe it's not just your thyroid. In the hopes you could remedy all your deficiencies, perhaps your condition could improve.

    You are the only one to decide that of course but read all your can so that you aren't just thrown about by GP's who don't seem to know much about treating hypothyroidism.

    A few websites to check out.

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