Weight loss and nerve pains with Hashimotos - Thyroid UK

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Weight loss and nerve pains with Hashimotos

Anjim2 profile image
8 Replies

Hi,

I have just been diagnosed with Hashimotos. My TSH is 5, free T4 is 14.2 and my TPO is >600ku/L. I can relate to alot of the symptoms but I have lost 3 stone in 7months and have diarrhoea most days (the opposite of what is expected). My folate levels were low but after a course of folic acid are ok now. I was wondering if others had lost weight and also whether my nerve pains will improve once the Levo starts to work. I am on 100mcg.

Thanks in Advance

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SlowDragon profile image
SlowDragonAdministrator

Absolutely insist on coeliac test asap

Have you had vitamin D, B12 and ferritin tested too?

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

TSH 5, FT4 14.2

Are these results while on 100mcg?

If so you are under medicated and need dose increase

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

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

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

Ideally ask GP for coeliac blood test first

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...

thyroidpharmacist.com/artic...

Persistent low vitamins with supplements suggests coeliac disease or gluten intolerance

gluten.org/resources/health...

Dairy intolerance is also common.

Some Hashimoto's patients cut both right out. And then reintroduce dairy to see if they can tolerate

Others find just gluten free is enough

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

tukadmin@thyroiduk.org

Plus list of recommended thyroid specialists

Professor Toft recent article saying, T3 may be necessary for many

rcpe.ac.uk/sites/default/fi...

With Hashimoto's we must get Levo dose high enough to bring TSH down to around one, get all vitamin levels optimal and most/many need to be strictly gluten free as well

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

But take all other steps first

Anjim2 profile image
Anjim2 in reply to SlowDragon

These results are before meds. I just started taking levo yesterday. Thanks for your advice and I will speak to my GP regarding other tests.

Saggyuk profile image
Saggyuk in reply to Anjim2

Yes, I agree, coeliacs test as these are classic symptoms and nutritional tests including B12, folate iron/ferritin and vit d straight away. if coeliacs comes back negative and or refuse to refer you to gastro, give gluten free a go anyway for three months and get your own vitamin tests :-)

I don't tend to put weight on as expected when hypothyroid and sometimes even lose a little weight but weight loss to that degree for no reason plus diarrhea needs to be investigated!

Saggyuk profile image
Saggyuk in reply to Anjim2

Also because of the nerve issues, if you haven't had the b12 tested yet, I would maybe not take the folic acid until you have done so. If you had a B12 test, post the results :-)

Anjim2 profile image
Anjim2 in reply to Saggyuk

Thanks. I dont know actual levels but was told B12 was ok but folate was low so thats why I was prescribed folic acid 5mgs for 3months. The latest folate test was ok and I am now off the folic acid. It appears that I need to request more tests though, particularly around Coeliacs and lactose intolerances as it sounds like these are often linked to Hashimotos.

Saggyuk profile image
Saggyuk in reply to Anjim2

Apologies, I should have explained a little more, B12 deficiency can cause issues or damage to nerves (sometimes permenant) and treating folate deficiency before B12 if you are B12 deficient, increases the chances of this not reversing and acerbates it. Docs sometimes ignore low but in range b12 levels and the ranges are somewhat out of date - some other countries consider under 500 to be deficient for example.

You can ask your doctors receptionist for a print out of your results.

Here's the NICE guidelines which docs are supposed to follow which includes investigation of Coeliacs and issues with folate:

cks.nice.org.uk/anaemia-b12...

Anjim2 profile image
Anjim2 in reply to Saggyuk

Thanks...very interesting. I think I need to be more assertive with my GP and ensure I am being managed properly. I think I will also push for a Gastro referral. Ive been quite unwell for some time now and need to get this sorted.

thyroidrose profile image
thyroidrose

Anjim yes I do not have weight gain with hypothyroidism and in fact have lost weight. It can be so hard to wrap your mind around the varying symptoms! We are all so different.

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