Looking for supportive endo

[Liz-C]

Hi I'm new, I have antibodies attacking my thyroid. I saw my gp 2 weeks ago about getting referred to a supportive endo for continuing hypothyroid symptoms on 175mcg levo, family history of autoimmune issues. Symptoms are getting me down, I've been crying at work, tired, eyes with bags under them. I am hoping my appointment is not too far away after being fobbed off with "get out more", "how about some antidepressants " etc. Any idea how to best approach my upcoming appointment with my new endo? I was diagnosed 2012 with underactive, thankyou

[SlowDragon Administrator]

can you add your most recent results - TSH< FT3, FT4 plus antibodies

Also vitamin D, folate, ferritin and B12

what supplements do you take, if any?

are you strictly gluten free or been tested for coeliac disease

[Liz-C in reply to SlowDragon]

TSH 4.80 (0.2 - 4.2)

FT4 14.6 (12 - 22)

FT3 3.2 (3.1 - 6.8)

TPO antibodies 668.5 (<34)

TG antibodies 904 (<115)

Not gluten free as symptoms did not get better on gluten free diet and GP wants to do coeliac test

[SlowDragon Administrator in reply to Liz-C]

You are very under medicated to have TSH so high

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

[e-mail]

Official NHS guidelines saying TSH should be between 0.2 and 2.0 when on Levothyroxine

See box

Thyroxine replacement in primary hypothyroidism

pathology.leedsth.nhs.uk/pa...

You antibodies are very 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

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)

Even if you feel no different strictly gluten free diet it is likely slowly reducing your thyroid antibodies

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

Good your GP is doing coeliac test. You can gave blood test straight away. But will need endoscopy to confirm

Regardless of results, majority with Hashimoto's find gluten free diet helps

Some also or instead need to be dairy free

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...

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

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

But with Hashimoto's we need vitamin levels optimal first, food intolerances dealt with and with Levothyroxine dose high enough to bring TSH down to around one and FT4 towards top of range

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

Can you add your vitamin results and ranges

[Liz-C in reply to SlowDragon]

Ferritin 16 (15 - 150)

Folate 2.5 (2.5 - 19.5)

Vitamin B12 218 (180 - 900)

Vitamin D 33.8 (25 - 50 deficiency)

[SlowDragon Administrator in reply to Liz-C]

Post these on

healthunlocked.com/pasoc

For advice on very low B12 and folate

They are all much too low

Detailed supplements advice on Low vitamins due to under medication

healthunlocked.com/thyroidu...

[Liz-C in reply to SlowDragon]

Used to be on iron

Folic acid once a day

Vitamin D 800iu

B12 injections

[mhrmzi]

Hang in there Liz-C and you have come to the right place.

Fellow members here are even better to talk/confide to. And will suggest good readings and reliable good health tests in order to help you get some ideas of what is going on with your body. I was having a mental breakdown last week and this week i feel better.

My doc refused to medicate me and my GP laughed at me wanting to be tested for Vit D deficiency, for malaysia is a tropical country with plenty of sun and ‘no one’ would have D deficiency turns out i do.

Its a private lab test and i paid extra to get all done because some fellow members suggested doing the tests and im glad i did it all.

Now im taking the correct supplements + eliminating dairy + preservatives + gluten (unfortunately doesnt work for u sorry to know) to help repair the damage..so so glad i know it soon enough.

All the best