Hashimoto's Thyroiditis - still symptomatic even on Levothyroxine.

[Joolee]

Hey, thanks for allowing me to join this group. I'm just looking for some friendly advice, pointers, potential names of private doctors that may be able to help etc

I'm about to turn 30 but was diagnosed as Hypothyroid at around age 15. After three long years of going back and forth to my family GP, they finally agreed to test me and low and behold I was so underactive I was almost off the charts. So I was sent to see a specialist at our local hospital who told me and my mum I was Underactive due to Hashimoto's Thyroiditis. And that even though I could be medicated properly I may still be symptomatic and may need my thyroid removed further down the line.jump forward 10 years or so and although I had still been symptomatic from day 1, everything started to feel worse again. I pleaded with my doctor to investigate and they kept telling me my levels were "satisfactory". They point blank refused to even acknowledge the fact I'd been told I had Hashimotos. But we all know our own bodies right? So I decided to get a private test done a few weeks ago. And sure enough my thyroid levels are perfectly fine, however, my thyroid antibodies aren't. My thyroglobulin is 279 and my thyroid peroxidase antibodies are 172. I have also found out I have several vitamin deficiencies too as well as a nasty infection in my ENT area, mainly sinuses and throat. I just wondered if anyone in the UK has suffered like this and how they have got someone to listen as I just do not know what to do anymore. Sick and tired of feeling so sick and tired but my GP has basically tried to say it's all in my head when I have concrete proof? 🤷🏼‍♀️🤷🏼‍♀️

[SlowDragon Administrator]

Welcome to the forum

First, do you have recent results and ranges on thyroid and vitamin results that you can add

How much levothyroxine are you currently taking

Do you always get same brand

Which brand

What vitamin supplements are you currently taking

As you have Hashimoto’s have you had coeliac blood test

Are you on absolutely strictly gluten free diet?

With Hashimoto’s we need OPTIMAL Vitamin levels and frequently strictly gluten free diet helps or is absolutely essential

For full Thyroid evaluation you need TSH, FT4 and FT3 tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12 at least annually

Low vitamin levels are extremely common with Hashimoto’s

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Is this how you do your tests?

Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins

List of private testing options

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Thriva also offer just vitamin testing

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/

Also vitamin D available as separate test via MMH

Or alternative Vitamin D NHS postal kit

vitamindtest.org.uk

[tattybogle]

let us see these 'satisfactory' and 'perfectly fine' thyroid results, and all may become clear

Basically GP's don't really use the term hashimoto's in the UK , they call it Autoimmune Thyroid Disease if they call it anything at all , often its just referred to as 'hypothyroidism'

But the majority of hypothyroidism cases are caused by autoimmunity in this country.

...technically Hashimoto's is one where you get a goitre , (swollen thyroid , and Ord's is one where you don't, bit nobody's heard of Ord's and they can't make their minds up about definitions anyway)

Once you have been diagnosed with autoimmune hypothyroidism you can expect to see raised TPOab's/and or TGab's throughout your life, they go up and down, and there may or may not be any way of influencing them .. opinions differ.