Thyroid eye disease (graves): Okay so I’ve... - Thyroid UK

Thyroid UK

137,153 members160,835 posts

Thyroid eye disease (graves)

44Maxine profile image
4 Replies

Okay so I’ve please bare with me lol.. I visited opticians who has given me a letter to give to GP to refer me to ophthalmologist suggesting thyroid eye disease related to graves. I’ve been dealing with daily migraine with aura since July (very traumatic) nothing seems to be working and wondering now if it cud be related to my eyes?.. I’ve also been fitting in my sleep (gp is not concerned about also very traumatic) I have a constant vibration feeling throughout my body, insane fatigue, burning skin etc... weight gain 2st since Dec, barely any appetite, house bound since July & 90% of the time been bed bound since Dec. I’ve previously been diagnosed with hashimotos and so refused any treatment as all values within range. I’m really struggling and can not function in society anymore (I did a previous post on vitamins which I have ordered, I have been taking Vit D & magnesium aswell) I will add my results below, does anyone think it is worth changing GP’s to see if I can get a trial on something or am I wasting my time?... thanks in advance...

I’ve added recent & previous results to maybe get a gage at the fluctuations etc...

TSH 3.4 (0.2 - 4)

T4 14.1 ( 10 - 20)

(Results 29th March TSH 2 (0.2-4)

(Results 2nd Jan TSH 3.1 (0.2 - 4), T4 14.9 (10-20),

Serum Thyroid Peroxidase antibody 1300 (<100)

(Results Oct 18 TSH 2.1 , T4 13 (10-20),

(Results July 18 TSH 1.1 , Serum Thyroid Peroxidase 352 (<100)

(Results June 18 TSH 4, T4 14 (10-20)

Written by
44Maxine profile image
44Maxine
To view profiles and participate in discussions please or .
Read more about...
4 Replies
SlowDragon profile image
SlowDragonAdministrator

Hashimoto's can cause sore and swollen eyes too.

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also extremely important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if Thyroid antibodies are raised

Your antibodies are extremely high. Vitamin levels likely to be low or even very low

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting.This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

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

Is this how you do your tests?

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

Medichecks currently have an offer on until end of May - 20% off

thyroiduk.org.uk/index.html

If 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.

Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten.

So it's important to get TPO and TG thyroid antibodies tested at least once .

Link about thyroid blood tests

thyroiduk.org/tuk/testing/t...

Link about antibodies and Hashimoto's

thyroiduk.org.uk/tuk/about_...

thyroiduk.org.uk/tuk/about_...

List of hypothyroid symptoms

thyroiduk.org.uk/tuk/about_...

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. Dairy is second most common.

According to Izabella Wentz the Thyroid Pharmacist

approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly.

Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

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 or buy test online for under £20, just to rule it out first

Assuming test is negative you can immediately go on strictly gluten free diet

(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)

Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

thyroidpharmacist.com/artic...

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

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

restartmed.com/hashimotos-g...

You are highly likely to need to start on Levothyroxine. Your TSH is not responding correctly, so you should be referred to endocrinologist for treatment

Getting vitamins tested is FIRST step

Email Dionne at Thyroid Uk for list of recommended thyroid specialists

please email Dionne at

tukadmin@thyroiduk.org

44Maxine profile image
44Maxine in reply to SlowDragon

Thank you for this info, yes I have had my vitamins tested and seen low in B, I have ordered a supplement suggested on here, & had a booster shot y.day & am taking Vit D (as low) & magnesium... I am awaiting a referral to Endo, but last time I went they refused any treatment just said a lot of ppl have hashimotos & just get on with it & suggested I see a psychiatrist... I am 100% refusing antidepressants as I know they will not work.. I will try the gluten free diet to see if that makes a diff, as I am on omeprezol daily for stomach acid so would make sense x

SlowDragon profile image
SlowDragonAdministrator in reply to 44Maxine

Most people with Hashimoto's have LOW stomach acid, not high stomach acid

Virtually identical symptoms but very different treatment

Thousands of posts about this......including this one that I just replied too

healthunlocked.com/thyroidu...

You can NOT just stop a PPI. It must be weened off very very slowly and get other steps in place first....good vitamin levels and often strictly gluten free diet

Many many people on here use one of three main options to increase stomach acid

Apple cider vinegar with mother

Betaine HCL

Slippery Elm

44Maxine profile image
44Maxine in reply to SlowDragon

Oh wow that’s interesting, as the omeprezol do not work lol, and dr just says you’ll just have to persevere... so likely hood is stomach acid is too low.. thank you for this info c

You may also like...

GP not picking up Graves or Thyroid Eye Disease.

showed that I had Graves’ disease. Since then my thyroid has been removed and they found a...

Graves’ disease. Total thyroid removal

extreme tiredness pain all over. Latest bloods result today TSH 0.2 T4 18.6. G.P wants to reduce...

Thyroid Eye Disease query

hyper at all and have always been hypo, latest bloods (Dec) show suppressed TSH at 0.01 (0.27-4.30)...

Graves disease eye symptoms

It has been two years. My eyes run drip water, burn, are bloodshot, terrible bags under my eyes,...

Help- new to thyroid eye disease

my right eye. First two doctors I saw said 'eye is not damaged'. However a week later the eye was...