I got ill with an over active thyroid when I was 21 (17 years ago). After lots of treatment I had to have radio iodine treatment. I have been taking thyroxine 150mg/175mg alternate days for the last 15 years. My levels have been pretty much stable for that time.
I also have Lupus (SLE) and after a consultation with my rheumatologist he decided to check my thyroid levels. I’ve just received a letter to say that my TSH is raised at 8.20, with a free thyroxine within the normal range. He wants me to repeat my blood in a month and if there still raised he has asked my gp to consider a referral to the endocrinologist. He wants my prolactin and FSH checked too.
Has anyone please got any advice or experience with this? Two people in my family have had Thyroid cancer. I’m probably catastrophizing but I can’t help but worry.
Something is wrong in my body though that much I know. How much of it is my other illnesses, who knows!
Thanks for reading
Vicci 🙂
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Vicci
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Levothyroxine is only T4. (Inactive Thyroid hormone that must be converted to T3 in cells) Many need addition of small dose of synthetic T3 (Liothyronine)
Adequate dose of Levothyroxine should bring TSH down to around one and FT4 towards top of range and FT3 at least half way in range
Low vitamins can affect things too so important to test vitamin D, folate, ferritin and B12
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 or RAI
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)
That’s some great advice thank you. I’ll get on top of those print outs. It might be that my bloods are normal again when rechecked but at least I’m prepared in case they aren’t.
I already take D3, Calcum, and have b12 injections every 10 weeks. My iron levels are fine as I get them checked every 4,weeks due to being on immune suppressants for the Lupus.
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