Thyroid UK
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Endo stopping my levothyroxine, raised thyroid antibodies

Hi I am a newbie. My endo has stopped my150mcg levothyroxine based on below bloods done back in September 2017:

TSH 0.03 mIU/L (0.2 - 4.2)

Free T4 21.3 pmol/L (12.0 - 22.0)

Free T3 4.2 pmol/L (3.10 - 6.80)

Thyroid peroxidase antibody >3000 IU/mL (<34)

Thyroglobulin antibody 304.5 IU/mL (<115)

Follow up bloods done 3 weeks ago and I have symptoms of tiredness, going from a size 6 to a size 12, puffy eyes, depression, breathlessness, dizziness, pins and needles, dry skin, feeling cold. So was the endo right to do what he did?

Thankyou

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Was this "Endo" a diabetes specialist by any chance?

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I don't know to be honest. I am under the care of diabetes and endocrinology and no idea if he is a diabetes specialist

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Time to check him out as he is treating you very poorly ....

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Rosa1 the majority of them are diabetes specialists unfortunately as it's easier than thyroid hormones. Agree with Marz worth checking him out.

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No, he wasn't, he's a complete pillock! Your FT3 wasn't even mid-range. You have a conversion problem, not an over-medicated problem. What he should have done was reduce your levo - not stop it - and add in some T3. He has absolutely no idea what he's doing, and he's only looking at the TSH and having a knee jerk reaction.

Besides any other consideration, you have Hashi's, so need your TSH suppressed, to try and stop the other results jumping around. Are you gluten-free and taking selenium to reduce antibodies?

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If you're in the UK, I would visit your GP and point out that FT3 and FT4 were in range and they are the important thyroid hormones. TSH is a pituitary hormone and so long as FT3 and FT4 are in range you are not overmedicated. Stopping your levothyroxine will make you extremely unwell. Adjustments of Levothyroxine should only be in 25mcg increments or it will make you feel very ill and will probably trash your vitamin levels too. Judging by your results you will become hypothyroid. Has the Endo organised another blood test in 6 weeks after removing your dose of levothyroxine?

It seems your Endocrinologist does not understand thyroid disease and hormone treatment. Get your GP to reinstate your thyroid hormone while you sort this mess out and get another blood test 6 weeks after reinstating thyroid hormone. And get a new Endo that knows something about thyroid. When you get the thyroid blood test, get GP to test vitamins if possible.

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I have results online and they are after the 6 weeks:

TSH 6.3 (0.2 - 4.2)

Free T4 13.8 (12 - 22)

Free T3 3.9 (3.1 - 6.8)

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Dreadful to have your levothyroxine stopped because as you can see you are now hypothyroid and you'll have to start stepping levothyroxine back up again because if you suddenly take a full dose all at once you'll probably feel terrible. You need to start back on 50mcg and then retest in 6 weeks and adjust dose, retest in another 6 weeks and so on until you feel well. Get another Endo.

Just noticed SlowDragon has responded with similar but more complete advice so good advice to follow and check out SeasideSusie's posts as advised.

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Hi no I'm not taking selenium. I had my level tested which was low in range. I asked my GP if supplementing it would be a good idea and she said no

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Well, what would she know! Never ask for or take advice from doctors on matters of nutrition. They know s*d all about it!

Selenium not only lowers antibodies, but helps with conversion. It needs to be optimal, not low in range.

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On what basis did the GP say no? Ask the GP what the recommended adult daily allowance is. Mostly GP's are not trained in nutrition in the UK so don't expect them to know anything.

Selenium

webmd.com/a-to-z-guides/sup...

Selenium Research NCBI

ncbi.nlm.nih.gov/pmc/articl...

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The GP just said selenium was in range so no need to supplement

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What do you think?

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Well I think the GP is wrong, given what I've been told here.

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Well, GP's give medical opinions but it's up to you to decide if their opinion is valid or not. Most won't have read recent research on vitamins as it's not part of their training or professional development.

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So are you saying you have not had ANY Levo at all since September?

That's utter madness if it's true

Email Louise at a Thyroid UK for list of recommended thyroid specialists louise.roberts@thyroiduk.org.uk

Make urgent appointment with GP Monday and ask for full Thyroid evaluation plus vitamin D, Folate, ferritin and B12

Your results in September show you were still under medicated as FT3 was too low

Highly likely you had terrible low vitamin levels then too

Essential to test vitamin D, folate, ferritin and B12. Always get actual results and ranges. Post results when you have them, members can advise

With Hashimoto's, until it's under control, our gut can be badly affected. Low stomach acid can lead to poor absorption of vitamins. Low vitamin levels stop thyroid hormones 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

thyroidpharmacist.com/artic...

thyroidpharmacist.com/artic...

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

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I have results online and they are after the 6 weeks:

TSH 6.3 (0.2 - 4.2)

Free T4 13.8 (12 - 22)

Free T3 3.9 (3.1 - 6.8)

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No levo since September

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See GP Monday and tell them you will be starting back on Levothyroxine at 50mcgs.

Say you suspect gluten intolerance or coeliac and please can they test vitamin D, Folate, ferritin and B12.

You will need to retest thyroid after 6 weeks, increasing in 25mcg steps back up, testing 6 weeks after each dose increase, until TSH is around one and FT4 towards top of range

Vitamins likely to need massive amount of supplements and you may need testing for Pernicious Anaemia if B12 is very low

Supplementing vitamin C now will help support your adrenal system

All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH and most consistent results

Email Louise at a Thyroid UK for list of recommended thyroid specialists louise.roberts@thyroiduk.org.uk

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 article by emailing louise.roberts@thyroiduk.org print it and highlight question 6 to show your doctor.

See this link for vitamin advice from SeasideSusie

healthunlocked.com/thyroidu...

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