Thyroid UK

Endo asking me to stop levothyroxine

Hi I am new my endo has asked me to stop levothyroxine based on symptoms of sweats, insomnia, weight loss but I have hypothyroid symptoms of depression, tiredness, muscle weakness, flaky nails, dry eyes, hair loss, puffy eyes, eyebrow and eyelash loss, constipation, heavy periods. Is this correct please? Taking 50mcg levothyroxine diagnosed 7 years ago thankyou

Dec 2017

*TSH 5.1 mIU/L (0.2 - 4.2)

FT4 14.6 pmol/L (12 - 22)

FT3 3.3 pmol/L (3.1 - 6.8)

*TPO antibody 204.5 IU/mL (<34)

*TG antibody 2000 IU/mL (<115)

25 Replies

No, it's not correct. Your endo is undoubtedly a diabetes specialist who doesn't understand Hypothyroidism or how to treat it.

You have autoimmune thyroiditis (patients call it Hashimoto's) which is confirmed by your raised antibodies. Antibodies attack and gradually destroy the thyroid and these attacks cause fluctuations in symptoms and test results. Unfortunately most doctors don't understand this or know anything about it or how it affects the patient, so they mess around with your dose making you very unwell in the process.

Read, learn and help yourself because your doctor won't:

A strict gluten free diet can help reduce antibodies:

Supplementing with selenium L-selenomethionine 200mcg daily plus keeping TSH suppressed can also help reduce antibodies.

Hashi's tends to trash nutrient levels so you need the following tested:

Vit D




And if ferritin is low then:

Iron panel

Full blood count

All nutrients need to be optimal for Thyroid hormone to work.

You are undermedicated and need an increase in Levo. The aim of a Hypo patient generally is for TSH to be 1 or below or wherever it is needed for FT4 and FT3 to be in the upper part of their respective reference ranges if that is where you feel well. Do not stop your Levo. Your symptoms will be due to undermedication and/or antibody activity.

Best advice is to find a new endo who understands Hypothyroidism and recognises autoimmune thyroiditis, however that is a bit like looking for a needle in a haystack!


Ok thankyou I was taking 150mcg Levothyroxine before so I will increase straight back to this. I also have folate anaemia and iron anaemia and taking B12 injections and vit D deficient



Dose adjustments shouldn't exceed 50mcg. You can increase to 100mcg and retest after 6-8 weeks.


Find a new endocrinologist fast. Presumably this one is Diabetes specialist

You are correct, you are extremely under medicated

50mcgs is only a starter dose. It should be retested 6-8 weeks after starting and increased in 25mcg steps until TSH is around one

You need immediate 25mcg dose increase in Levo. Blood should be retested after 6-8 weeks and dose increased in 25mcg steps until TSH is around one and FT4 towards top of range and FT3 at least half way in range

Likely to need several dose increases, always retesting bloods after 6-8 weeks

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

Sweating and tremors likely due to very low vitamins as result of being so under medicated

Post with similar Sweating and tremor

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

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

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 must get vitamins optimal first. Dose of Levothyroxine increased in 25mcg steps until after TSH is around one and FT4 towards top of range

Highly likely to need to be strictly gluten free too

If after this FT3 remains low then like many with Hashimoto's you may need addition of small dose of T3


Ok thankyou I was taking 150mcg Levothyroxine before so I will increase straight back to this. I also have folate anaemia and iron anaemia and taking B12 injections and vit D deficient


How long since reduced to 50mcg?

When was T3 stopped?

You may need to step up dose of Levo slower than that. Try 50mcg

Likely to have crashed vitamin levels severely having T3 stopped

They will need increased supplements to improve

Who stopped it and why?

You will very likely need to be strictly gluten free first, to go back on T3

Typical posts after T3 stopped

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

You need a new endo.

Email Thyroid UK for list of recommended thyroid specialists

please email Dionne:


Dose reduced 3 days ago, T3 stopped 5 months ago

Endo said I didn't need it


If you only reduced three days ago you will be safe enough to go back to your previous dose without having to build up slowly.

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Ok fine just put it straight back up

You will need to find T3 friendly endo

Email Thyroid UK for list


FT3 always low and was on T3



You are undermedicated on 50mcg to have TSH 5.1 with low FT4 and FT3 and that will be causing your symptoms. Ask for a dose increase to 75mcg. If endo mentions stopping Levothyroxine again refuse and ask to see someone else.

The goal of Levothyroxine is to restore the patient to euthyroid status. For most patients that will be when TSH is 0.3 - 1.0 with FT4 in the upper range. FT4 needs to be in the upper range in order that sufficient T3 is converted. Read Treatment Options in Email if you would like a copy of the Pulse article to show your GP.

Thyroid peroxidase antibodies are positive for autoimmune thyroid disease (Hashimoto's). There is no cure for Hashimoto's which causes 90% of hypothyroidism. Levothyroxine treatment is for the low thyroid levels it causes. Many people have found that 100% gluten-free diet is helpful in reducing Hashi flares, symptoms and eventually antibodies.

Ask your GP or endo to check ferritin, vitamin D, B12 and folate as these are often low/deficient in hypothyroid patients and can cause symptoms similar to hypothyroidism.


Ok thankyou I was taking 150mcg Levothyroxine before so I will increase straight back to this. I also have folate anaemia and iron anaemia and taking B12 injections and vit D deficient


Was taking T3 before and had no symptoms



So why was T3 stopped and Levothyroxine reduced from 150mcg?


Endo told me I didn't need it and diagnosed me with anxiety


You and many others

It's their standard get out clause

Anxiety is a classic symptom of incorrectly treated Hashimoto's

Taking T3 away will have lowered vitamin levels preventing conversion of T4 to T3



I would write to the head of endocrinology or to the hospital PALS and make a formal complaint that the endo is not competent to diagnose anxiety and his/her withdrawal of T3 and reduction of Levothyroxine has undermedicated you causing symptoms to escalate. Ask to be referred to a different endo.

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Ferritin etc been told fine


Post results of these members can advise

Medics have little idea about importance of good vitamin levels

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Similar erroneous mis diagnosis of anxiety after T3 removed

All had terrible vitamin levels after T3 stopped

Endo said she had hypochondria after T3 stopped

Generalised anxiety after T3 stopped


The number of posts I read where doctors & Endocrinologists really dont know what they are doing is plain scary.....Is the situation getting worse or is it my imagination???


I think its getting worse.....the number who have had T3 started and then being stopped (due to cost) is utterly alarming

Presumably T3 aware endocrinologists are so pi***ed off they have left NHS or been prevented from prescribing


Am beginning to think Endos are confused and don't know the difference between T4 & T3. Having been told to stop T3 they are also stopping T4 ....


I think its even worse than that Martz. I think theyve decided that high TSH is good and all thats needed....comfusing TSH with actual thyroid hormones......infact even worse I suspect they think the Thyroid is an extra in the body that we dont really need and can survive happily without.


It does beg the question as to what they actually learn at Med School ....

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