Log in
Thyroid UK
93,719 members107,732 posts

New here - endo told me to stop Levothyroxine

Hello. I was diagnosed with Hashimotos 8 years ago with a TSH of 89 (0.2 - 4.2) and FT4 of 10.3 (12 - 22) I was on thyroid replacement straight away. Have been on as much as 200mcg Levothyroxine with 20mcg T3 and I felt well. My endo has decided it would be a good idea for me to completely stop taking Levothyroxine so that he could look for a pattern as to what my dose should be and would only reinstate Levothyroxine if needed. I am 10 weeks off Levothyroxine. My brain doesn't work, I am tired, my eyes are beginning to swell over my cheeks. Periods are clottier. Backs of legs aching. Any advice would be appreciated, thank you

10 Replies

Post identical to yours earlier today day, everything written there applies to you healthunlocked.com/thyroidu...



Your endo is a danger to your health. If he wanted to know your thyroid history all he had to do was to look at your thyroid function tests history. Please make a formal complaint to the head of endocrinology or the hospital PALS and request referral to another endo.

Please see your GP for a thyroid function test urgently as I'm sure you must be profoundly hypothyroid after 10 weeks off meds.


TSH 6.8 (0.2 - 4.2)

FT4 13.5 (12 - 22)

FT3 3.3 (3.1 - 6.8)



Well TSH is over range and FT4 and FT3 bottom of range so you are hypothyroid although not as much as I thought you might be. When do you see your endo?


In 12 months time



You need your GP to prescribe Levothyroxine then, you can't wait 12 months. Frankly, you would do better NOT to see that endo and let your GP treat you.

1 like

You have overt hypothyroidism. We are seeing more and more posts very similar to yours so please look at the link SeasideSusie gave you. Get a referral to another doctor a.s.a.p. and complain directly to the hospital you attended.

There seems to have been an outbreak of either gross incompetence or actual sadism in the endocrinology speciality.


Make an urgent appointment tomorrow with GP.

You need to start back on 50mcg dose levothyroxine TOMORROW

ask for vitamin D, folate, ferritin and B12 to be tested too and thyroid antibodies as well


Report the endocrinologist too when feeling better


Thyroid peroxidase antibodies 5045.1 (<34)

Thyroglobulin antibodies 614.3 (<115)


Your 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

Essential to test vitamin D, folate, ferritin and B12.

These always crash out after T3 stopped

Always get actual results and ranges. Post results when you have them, members can advise

Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels

Low vitamin levels affect Thyroid hormone working

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's is very poorly understood

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

Ask GP for coeliac blood test first








Thyroid UK are collecting evidence of malpractice due to removing clinically needed T3

Please consider sending a brief outline of this. How T3 improved you and the subsequent disaster since it was stopped. I would include the dire vitamin levels


Recent debate in Scottish parliament about T3


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:

Prof Toft - article just published now saying T3 is likely essential for many


With Hashimoto's we need to get vitamins optimal FIRST, plus get Levo dose increased until TSH is around one and FT4 towards top of range

Very likely gluten free diet helps a lot or is essential

If FT3 remains low then, like many with Hashimoto's, you may stills need small dose of T3


You may also like...