Hello, I’d welcome some advice please. I’ve been taking 100mcg x 6 days and 75mcg x 1 day for most of this year. Recent results have been:
26/7/22 - TSH 1.1 (0.27-4.2)
27/8/22 - TSH 0.68
7/12/22 - TSH 0.9, FT3/4 normal (no result provided)
I was referred to an endo due to low cortisol, but this was repeated and was normal. The last test above was done at his request too and he’s advised that my TSH is low so I should reduce to 100x4 and 75x3 because if afib/osteo risks.
I have been feeling excessively tired hence the cortisol tests but I also gave bradycardia which he’s suggested investigating further. Although I’m struggling with energy, I don’t feel like it’s to do with my levo dose (have tried many variations over the years!), but obviously I don’t want afib or osteoporosis! He was really nice to me and I felt like he dug want to make me better so I’m not sure whether to try what he’s suggesting or not. I didn’t think the results looked particularly low, but I’m not a doctor!
Thank you for any help.
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mountaingoat83
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You really do need an FT4 & especially FT3 result to know what's going on. Most people here pay privately to get those results through private testing companies.
Do you have recent results for ferritin, folate, B12 and D3?
Thank you v much. They were my results from my GP but I have emailed the E do’s secretary to ask for my FT3/4. Helpful to know on the folate - I’ve tried a B complex before and it seemed to give me bowel issues but perhaps I should try again.
You will see frequently mentioned here to never reduce dose on TSH alone, it's not a thyroid hormone, it's a pituitary hormone and can't tell us our thyroid status. You absolutely need to test FT4 and FT3 and you aren't overmedicated unless FT3 is over range.
There are many posts dispelling the myth of low TSH causing AF and osteoporosis - see 7 myths of hypothyroidism on ThyroidUK's website and scroll down to
The myth that a suppressed TSH leads to Osteoporosis
Also, Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine (the professional publication for doctors):
"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).*"
*He confirmed, during a talk he gave to The Thyroid Trust, that this applies to Free T3 as well as Total T3 and this is when on Levo only. You can hear this at 1 hour 19 mins to 1 hour 21 minutes in this video of that talk youtu.be/HYhYAVyKzhw
He's unlikely to say that if there is evidence it will cause osteoporisis (or AF).
Study showing no additional risks to heart or bones with long term T3:
Conclusion: For patients taking long-term liothyronine we did not identify any additional risk of atrial fibrillation, cardiovascular disease or fractures. There was an increased incident use of antipsychotic medication during follow-up.
Unfortunately a lot of doctors/practioners still need educating!
You're right , that TSH isn't particularly low .. it will almost certainly still be in range at 0.9
The most common level for TSH in healthy people without thyroid diseases is around 1,,, so 0,9 is perfectly acceptable in my book.
According to a very large ,long term study of people on Levo, there are some increased risks associated with low TSH, but they didn't actually show up until TSH is below 0.04.. which is a lot less than 0.9... the risks for TSH 0.04 to 0.4 were actually no greater than the risks for TSH in range [0.4-4] There are also increased risks for TSH over 4.
See my reply to this post (3rd reply down) healthunlocked.com/thyroidu... feeling-fine-but-tsh-is-low ~ for links to that study and a list of useful discussions on the subject of Low TSH/ Risk / Quality of life .
Also See this post .. which shows that when TSH is kept deliberately supressed (in patients on Levo following thyroid cancer) they found no increase in risks to bones. healthunlocked.com/thyroidu... longterm-subclinical-hyperthyroidism-does-not-affect-bone-density-in-patients-having-had-thyroid-ablation-for-cancer
Also see this list of recommendations for GP's to keep TSH below about 2/ 2.5.. note, several of them quote 0.04/ 0.05 as the bottom end of their recommendations for TSH, particularly the one written by "...a specialist registrar in endocrinology and... a specialist registrar in cardiology, Liverpool". healthunlocked.com/thyroidu... my-list-of-references-recommending-gp-s-keep-tsh-lower-
But everyine is different .. it is of course possible you are very slightly overmedicated and if so, a slight reduction may improve how you feel , BUT.... the way to tell this would be from looking at fT4 level,, and fT3 level, in conjunction with TSH AND any symptoms that could be overmedication .... just looking at the TSH in isolation is a very poor way to asses the correct dose ... current research papers are increasingly waking up to this realisation that TSH on it's own is not the best was to asses dose in patients taking Levo .. TSH test was only designed as a screening test to aid early diagnosis, but has increasingly been used to asses dose . for which it is not so accurate .... endocrinologists ought to be doing better than just looking at TSH for dose assessment.
Reducing dose based only on a TSH of 0.9 could be just as likely leave you undermedicated and feeling worse than you do now .. an experiment that will not hurt the Endo at all , but could mess you up for a couple of months , and take another couple of months to recover from ..... yet they suggest this, rather than do a couple more tests that cost bugger all to do ?? .
An Endo should have no difficulty whatsoever getting the lab to do both fT4 and fT3 is he wanted them done .
Thank you for the very helpful replies. The tests were done privately via Bupa so I have emailed the secretary and asked for a full copy of the results, as the letter I received just said normal for T3/4. I will see what the actual results are and decide what to do based on that.
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