Thyroid woes: For the last few weeks all I ha e... - Thyroid UK

Thyroid UK

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Thyroid woes


For the last few weeks all I ha e done is sleep and sweat I was diagnosed with an underactibe thyroid six years ago since then I was started on 50mg of Levothyroxine and at one stage rising to 175, however I have been on 125mg now for about 18 months, I had a blood test a week ago and had. Phone call to say I need to drop to 100mg or I could have a stroke as I was over medicated, I dropped to 100 g today and can still only stay awake for six hours maximum what can I do

4 Replies

For full Thyroid evaluation you need TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodies. Plus vitamin D, folate, ferritin and B12.

Just dosing by only testing TSH is totally inadequate

Essential to test thyroid antibodies, FT3 and FT4, plus vitamins

Ask GP to test all these

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. When 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)

If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all hypothyroidism in Uk is due to Hashimoto's. Low vitamins are especially common with Hashimoto's. Food intolerances too, especially gluten. So it's important to get tested.

Thank you I have screen shotted all of that and have just rung go for a copy of my results so I can share it here and see exactly what they have and haven't done and in the meantime will research all of the above I care for my mum and can't stay in bed for six weeks unable to function so I need to get on top of this

SlowDragonAdministrator in reply to Suezanelliott

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

Also request list of recommended thyroid specialists in case you need it

Professor Toft recent article saying, T3 may be necessary for many otherwise we need high FT4 and suppressed TSH in order to have high enough FT3

however due to unjustified over inflated price of T3 it's extremely difficult to get prescribed on NHS

First step is to get vitamins optimal, dose of Levothyroxine correct and see if you have high antibodies

Official NHS guidelines saying TSH should be between 0.2 and 2.0 when on Levothyroxine

(Many of us need TSH nearer 0.2 than 2.0 to feel well)

See box

Thyroxine replacement in primary hypothyroidism

Thank you

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