High TSH despite being on Levo,

Had blood tests done last Sept and my TSH was 0.92,but in the last few months I have felt a bit unwell,Doctor wouldnt test anything else just TSH again and its now 4.3 0.2-4.5 mu/l,they said its normal,,but I dont feel normal,I previously had Hoffmans syndrome which made me very ill,I dont want to end up like that again,at the moment i take levothyroxine 100 mg,do you think I might need more,thanks for any advice

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5 Replies

  • It is not normal - the NHS thinks anything that fits their tick boxes is normal. Endos who know what's what will tell you that most people need to be in the lowest part of the range to feel well.

    I was kept undermedicated for years by the nhs - kept in the upper range like you. I wish i had taken control sooner. I now have suppressed tsh, that is what i need to feel half decent. Everyone is different

  • Hi, I have to say, I know little about thyroid problems and I'm trying to learn more - but my understanding is that someone who is already on levo should not have a TSH anywhere near that high!! That would be on the high side and causing symptoms for someone previously untreated, but if that is your reading with thyroxine replacement, I can't see how they could possibly consider that to be normal! I'm sure someone who knows their stuff will be along to answer you soon. It might be a good idea to edit the heading of your question to attract attention to it since there are many blood test posts everyday. Eg High TSH despite Levo? Xx

  • Thanks for your response Bluedaffodil and shiny 1,I know I dont feel as good as I should,just before I was diagnosed with Hoffmans syndrome,my pituitary gland was working 200 times harder than it should have been,amongst other things all my muscles went solid,I could barely move,the neurologist said the next thing would have been I would have gone into a coma,and it happened because of human error that no one notice,so I want to be pro active with regards to my health,but when your told its normal,then what do you do,I will take your advice,and edit the title, thanks x

  • Email louise.warvill@thyroiduk.org and ask for a copy of the Pulse Online article by Dr Toft. Highlight Question 6 and send a copy for your GP to peruse before your next appointment. Excerpt:

    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)."


  • Thank you shaws,sorry for the late reply,I have read the page you highlighted and I'm going back to see my GP,hopefully he will be able to help me feel a bit better

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