My friend has asked me to ask for suggestions how she can persuade her persistently stubborn doctor that she desperately needs her full prescription of thyroxine. She has been on between 125mcg T4 for some long time now but following her last blood test her doctor is insisting she cuts it down to 75mcg, and preferably 50mcg or maybe nothing at all. At 75mcg my friend can barely operate – she has a large family but is so tired and lethargic, cold, aches all over, has brain fog and all the 101 other symptoms that accompany low thyroid. No amount of pleading will change her doctor’s opinion that she doesn’t need as much thyroxine.
For a short time she increased to 150mcg. At this dose she felt well but couldn't continue through lack of sufficient tablets.
Her blood test results a couple of weeks ago were:
TSH < 0.01
T3 4.7
T4 10.6
Last year she tried a spell of only 75mcg and she was desperately ill, so went back to her usual dose. This time, there’s no bending with her doctor despite her list of symptoms.
Please, any suggestions.
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Svelsker
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Email Dionne at Thyroid Uk for list of recommended thyroid specialists
Unless she can find a more enlightened GP, her best option is to "go over his head" to see a thyroid specialist
But first absolutely essential to test both TPO and TG thyroid antibodies and vitamin D, folate, ferritin and B12.
Getting vitamins to good levels is first step.
If antibodies are high then trying strictly gluten free diet too, but do coeliac blood test first
All thyroid TSH, FT3 and FT4 tests should only be after 6-8 weeks on a CONSTANT unchanging dose of Levothyroxine
Low vitamin levels are extremely common, especially if Thyroid antibodies are raised
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. Do not take Levothyroxine dose in the 24 hours prior to test, delay and take immediately after blood draw. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Is this how she does her tests?
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies Or vitamins
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 special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
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
Thank you very much for replying. I will pass it on to her. I don't think she has the ranges as this is all the figures the doctor would give her. She has been gluten free for many years.
She should ask the receptionist for a print-out, not the doctor. The doctor would probably prefer she didn't know! However, if she is in the UK, it is her legal right to have her results - including ranges - so this doctor is breaking the law!
Without reference ranges it is impossible to be sure, but I think your friend might need to be tested for Central Hypothyroidism (CH). The thyroid may be perfectly healthy in this condition, but isn't getting the right signals from the pituitary gland so the thyroid fails to produce enough thyroid hormones.
If the pituitary can't produce enough TSH because it is diseased or poorly functioning for some reason, then the patient has Secondary Hypothyroidism.
The pituitary may be perfectly healthy but fail to function adequately because of a diseased or poorly functioning hypothalamus, and in this case the patient has Tertiary Hypothyroidism. It is quite likely that many doctors haven't heard of Tertiary Hypothyroidism because it is even more rare than Secondary Hypothyroidism.
CH is the collective name given to hypothyroidism caused by pituitary or hypothalamus issues.
Please be aware that doctors will often dismiss suggestions of Central or Secondary Hypothyroidism if it is suggested by a patient because it is rare. Unfortunately this failure of basic logic is common! If something is rare it doesn't mean that nobody has it!
If your friend is a possible candidate for CH testing (but you need the reference ranges to be sure), then she must stick to her guns and ask her doctor for a referral to an endo.
Thankyou everyone who has been so helpful with their replies and advice. My friend really appreciates it and it has given her plenty to think about and hopefully, she'll get somewhere now with either her doctor or a thyroid specialist. Thanks again.
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