Stopping Levo : I'm newly registered, Can an endo... - Thyroid UK

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Stopping Levo

I'm newly registered,

Can an endo stop Levo?

Mine has

Diagnosed in 2011 with hypothyroid, feeling very unwell

Thanks in advance

TSH 4.9 (0.2 - 4.2)

Free T4 14.8 (12 - 22)

Free T3 3.1 (3.1 - 6.8)

16 Replies

Once diagnosed as hypothyroid medication is for life. What reason did the Endo give for stopping your medication? You are clearly hypothyroid as your THS is above range. What were your thyroid results when first diagnosed?

Visit your GP, get your levothyroxine reinstated. We're seeing people every day on this forum to whom this is happening and there's usually a back-story and something going on in the Endo world that is not helpful for patients. Were you prescribed T3 at some point, are you slim and what were your thyroid test results when the Endo stopped your meds?


Endo said he can no longer treat me

Levels when diagnosed

TSH 104.5 (0.2 - 4.2)

FT4 10.2 (12 - 22)

Never given T3

Not slim

Thyroid results above are the ones that prompted endo to say can no longer treat me

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Were those blood tests when you were diagnosed, while you were taking Levothyroxine or after you stopped taking Levothyroxine? What reason did endo give for stopping Levothyroxine?

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When I was taking Levo

Endo said he can no longer treat me



You were undermedicated then so I don't know why endo stopped Levothyroxine. Has endo discharged you back to your GP?


I am not sure if I'm discharged I have been trying to get hold of him for a dose increase which he has said he will not do

Endo has said my condition is becoming too difficult for him to manage



Then you need to see another endo, preferably someone who knows something about thyroid treatment. Write to the head of endocrinology or the hospital PALS service and ask to be assigned a different endo. In the meantime make an appointment to see your GP for a Levothyroxine prescription.

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We need more info on your particular story

Similar post here too

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Given all info as above


See your GP urgently today if you have no Levothyroxine

How much Levothyroxine are you now taking.

If none, when was it stopped

Your results show you are very under medicated

Dose should be restarted at 50mcg, or if already on a dose, it needs to be increased by 25mcgs

Retesting 6-8 weeks after each dose increase 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

Presumably you have high thyroid antibodies? This is Hashimoto's also called autoimmune thyroid disease

Extremely likely you have very low vitamin levels unless supplementing because you are so under medicated.

Have you got recent test results for vitamin D, folate, ferritin and B12

If so add them on here

About 90% of all hypothyroidism in Uk is due to Hashimoto's

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 gut connection 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

Persistent low vitamins with supplements suggests coeliac disease or gluten intolerance

Your endocrinologist should be reported for leaving you without medication

You need a new endo.

Email Thyroid UK for list of recommended thyroid specialists

please email Dionne


Thyroid peroxidase antibody 679 (<34)

Thyroglobulin antibody 266.5 (<115)

Told not autoimmune


That underlines that your endocrinologist had absolutely no idea

These results show you definitely have autoimmune thyroid disease

TPO antibodies above 34 - so is positive

TG antibodies above 115 - also positive

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Levo stopped Nov 2017

Was taking 175


Do you have any Levothyroxine to take

See GP immediately and get started on 50mcg minimum. You may be able to tolerate 75mcg after 3-4 weeks.

Depends how terrible your vitamin levels are

Ask GP to do coeliac blood test and all vitamins

Typical Low vitamins due to under medication and detailed advice on supplements and how to improve

Can you add test results from when on 175mcg. Very much doubt you were over medicated


As Slowdragon has said, get an urgent apt with GP to have Levothyroxine reinstated. It sounds like Endo should have told you to see your GP and get referral to a thyroid specialist. It's no good leaving you hanging and you definitely need Levothyroxine and definitely have autoimmune thyroid disease.

Please tell us the outcome after seeing GP.

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