I had a TT January 2017. I left hospital on 150g levothyroxine and felt good apart from the initial headaches which passed after a week or so. 12 weeks later my dose was reduced to 125mg as my TSH was 0.04 (0.55-4.78) T4 was 19.2 (10-18.7). Again I felt well. Next test 12 weeks on they wanted to reduce again as no change but I refused. I decided not to go back until my annual meds review (February 2018). Results TSH 0.01 (0.55-4.78) T4 23.2 (10-18.7). NOW ON 100mg and not feeling great. Muscle fatigue and falling asleep when you don't expect too, not great as a keen runner. Next testing due in 4wks time. How low a dose can you survive on? I'm 5ft 2 and 58kg. I don't want to just survive, I want to feel well again.
Any help / advice would be appreciated.
Oh and my calcium levels are low so now on calcium supplements.
Written by
jazzylady
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I have my thyroid gland and couldn't get well on levo so that's why I think everyone whose had a TT should also be prescribed T3 with T4.
You need a Full Thyroid Function Test - not just TSH and T4. We all need TSH, T4, T3, Free T4, Free T3. I shall give you a link re FT4 and FT3.
Your T4 is supposed to convert to sufficient T3. T4 being inactive and has to convert. T3 is the only Active thyroid hormone and is needed in our millions of T3 receptor cells.
Some of us cannot convert T4 to T3. I just couldn't stand levo as I was far more unwell on it than before a diagnosis with a TSH of 100. The fact that your T4 is high might mean you don't convert properly so that's why a FT4 and FT3 is essential. If GP wont do these we have private labs which do home pin-prick tests. If doctor wont add T3 you can source your own and add to your levo (T4).
I know of one doctor who only took a blood test for the initial diagnosis, he wouldn't prescribe T4 but only NDT or T3. Thereafter doses were increased according to their clinical symptoms.
Read , Thyroid Hormone replacement - a counterblast to guidelines by Dr A Toft. You must have your FT3 levels tested. Take the above paper to your GP. Dr Toft used to be physician to the Queen when she was in Scotland.
Years ago it wd often be between 200 and 400 mcg after total thyroidectomy, but I am sure for some it would be less. As you say though, your T 3 is fine at the moment. Everyone is an individual so difficult to say what would be the minimum. It’s the FT3 levels that are important and yours are really good.
You need vitamin D tested. Low calcium is usually due to low vitamin D
Low vitamins are extremely common when on Levothyroxine and inadequately medicated
Also need folate, ferritin and B12 tested
Low vitamins affect Thyroid
For full Thyroid evaluation you need TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodies. Plus very important to test vitamin D, folate, ferritin and B12
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.
All thyroid tests should ideally be done as early as possible in morning and fasting. If on Levothyroxine, don't take in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, 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)."
You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor please email Dionne at
tukadmin@thyroiduk.org
Professor Toft recent article saying, T3 may be necessary for many. Note especially his comments on current inadequate treatment following thyroidectomy
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