High TSH despite being on Levo,: Had blood tests... - Thyroid UK

Thyroid UK

141,235 members166,485 posts

High TSH despite being on Levo,

dylandolly profile image
5 Replies

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

Written by
dylandolly profile image
dylandolly
To view profiles and participate in discussions please or .
Read more about...
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

dylandolly profile image
dylandolly

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

shaws profile image
shawsAdministrator

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)."

thyroiduk.org.uk/tuk/about_...

dylandolly profile image
dylandolly

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

Not what you're looking for?

You may also like...

High TSH despite high FT4

Hi everyone, am new to the forum, this is my first post. I'm baffled by my blood test results and...
Craigd101 profile image

On levo, TSH supressed

Hi lovelies, just had private thyroid test after increasing levo to 150mg for the last few months....
Sarah5-5 profile image

High TSH causes?

Hi everyone I'm somewhat active over on the pernicious anemia forums but have a question over here...
Ashley8 profile image

TSH increasing despite levothyroxine

Hi had my 8 weekly blood test and my TSH is 8.08, last test was 5.0. My free T4 is 11.8. The...
Scottifi profile image

Elevated TSH despite its suppression

I had papillary thyroid cancer 4 years ago with local lymph node metastases. I had a complete...
acousmetre profile image

Moderation team

See all
Buddy195 profile image
Buddy195Administrator
PurpleNails profile image
PurpleNailsAdministrator
SlowDragon profile image
SlowDragonAdministrator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.