Thyroid eye disease

[Busyy]

Hi all

I have Graves’ disease diagnosed 1 year ago, since then Iv developed thyroid eye disease in one eye, my eye is buldging and eye lid has retracted back. I am becoming more controlled now on my meds I started on 80mg carbimazole and am now down to 15mg a day with a normal TSH . My doctor says my eye should improve to be normal again- just wondering has anyone experienced this and how long does it take for it to become normal again??

Thank you in advance

[PurpleNails Administrator]

I hope your dose adjustments are judged on FT4 & FT3 and not based on normalising TSH.

TSH can stay disproportionately low even when FT4 & FT3 are low, (or even below range) and low thyroid levels can worsen TED.

Do you have any results?

If you are in the UK - This charity has excellent information on thyroid eye disease (TED) . They also have Facebook page.

tedct.org.uk

Do you have a referral to a specialist ophthalmologist? GPs and Endocrinologists do not manage TED.

Do you take selenium? Use eye drops? (Preservative free) and shades in bright light.

I understand that once the active phase has passed the appearance of they eye does often improve. Don’t google examples and panic about worse case scenarios & remember complications are rare.

Another members recommends taking regular photos to review the changes & over time.

[Dinkki]

Please do not just look at TSH. Look at t4 T3 reverse T3 abd auto autoantibodies .

[SeasideSusie Remembering in reply to Dinkki]

Dinkki

Why reverseT3?

[Buddy195 Administrator]

Hi Busyy,

I fully agree with everything PurpleNails has advised 😊

It’s so important to check your blood results & antibodies. I was diagnosed with Graves largely by symptoms (weight loss, tremor, palpitations) but (following advice on here) I checked antibodies privately and I actually have Hashimotos. I also have TED, so it is possible to have this with an under active thyroid (or even euthyroid).

TEDct gave me great advice & helped me find a TED specialist ophthalmologist in my area. They have a Facebook group & telephone advice line. You do need to see a TED specialist Ophthalmologist, not just your endo or a general eye specialist. My symptoms only improved when I was treated by a TED ophthalmologist.

Sunglasses & preservative free eye drops are my go- to products.

I do take regular photos of my eyes & their alignment, as this helps the ophthalmologist look at changes between appointments (These are in ‘hidden’ on my phone so I don’t look at them daily!).

If you smoke, it’s very important to stop with TED & do supplement with selenium, as this has been shown to help in early TED.

Definitely don’t overdo it looking at photos on Google…. These are worst case scenarios. My eyes now look nothing like they did 12 months ago.

Reading you past posts, I’m sorry to hear of your loss. Stress and trauma can definitely worsen thyroid and eye symptoms. How are you feeling now? Have you got a support network to help?

Please keep posting you need further advice or support; we are here to help one another.

[Nil15192 in reply to Buddy195]

Hi, what treatment did your TED specialist Ophthalmologist recommend you?

I also have TED but dont know if I should wait for gp referral to see a Ophthalmologist or go to a private one?

Did your eyes improve ?

Thank you

[Buddy195 Administrator in reply to Nil15192]

I saw a TED specialist ophthalmologist privately as I’d seen other ophthalmologists via the NHS & they were not as knowledgeable. TEDct helped me locate a TED specialist ophthalmologist in my area. He recommended I try adding T3 to get my thyroid results higher in the range & this helped reduce my eye swelling, light sensitivity & my (outer third) eyebrows grew back which was an added bonus.

[Nil15192 in reply to Buddy195]

How was the swelling managed ? What treatment were given please?

[Buddy195 Administrator in reply to Nil15192]

I had regular measuring of my eyes to monitor swelling/ bulging/ asymmetry. I didn’t require injections or surgery as the T3, eye drops and pain relief were sufficient for my mild- moderate TED. I’ve also replied to your post today.

[Nil15192 in reply to Buddy195]

Thank you very much

[Fruitandnutcase]

You’ve got really good advice from the first posters. I was going to say use plenty of preservative free eye drops - keep putting them in throughout the day - basically overdose on them you can’t put them in often enough. I used to have several bottles and I put them in throughout the day, I had them in jacket pockets, handbags, beside the bed, on the dining room table - I kept bottles handy all over the place. In an emergency I would buy cheap wetting drops from a chemist or supermarket just to get me by.

I found being in the car - mostly as a passenger - used to really irritate my eyes. I also discovered quite be accident when I ran out of them that the algae oil omega 3 capsules I take for my bones were making a huge difference to my eyes. They were dry before I developed Graves and got much worse - double vision etc but the algae omega 3 really helps them

Agree with the others - don’t Google - the images on there are really extreme.- you don’t see many people like that. Sometimes they go back to normal sometimes not but often you would need to know about TED to realise that someone has ‘thyroid eyes’.

[pennyannie]

Hello again Busyy :

Looking back to your first couple of posts a year ago, I can't seem to find confirmation of the medical evidence of which antibodies were found over range and positive at diagnosis.

I trust you now have confirmation and the medical evidence of what you are dealing with.

You might like to dip into the Elaine Moore Graves Disease Foundation trust website :

Graves Ophthalmology can run independant of Graves Disease and Elaine covers both aspects of this poorly understood and badly treated auto immune disease in great depth.

As previous said it is essential that you are dosed on your T3 and T4 levels and not a TSH :

The anti thyroid drug is blocking your own thyroid hormone production and needs to be finely titrated while you are in this " holding pattern " with your endocrinologist controlling of your levels of T3 and T4 and it's essential that you do not go too low in the ranges.

Some endos suggest adding back in a measure of T4 thyroid hormone so you levels shouldn't fall too low wilst the AT drug blocks your existing T3 and T4 from rising any further whilst you wait fr your own T3 and T4 thyroid hormones to fall back down into range.

This phase of the dsease is like a waiting game.

Waiting for your immune system to calm down and stop driving your T3 and T4 levels higher, waiting for your antibodies to fall way, and waiting for your T3 and T4 to fall back in range with the minimal amount of help.

When with a thyroid AI disease and metabolism going a bit haywire it's important to keep your core strength strong and solid, so it's advisable to keep an eye on your ferritin, folate, B12 and vitamin D as you'll likely being haing trouble extracting essential nutrients from your food irrespectiv of how " clean ' and " well " you eat, and this can pull you down even further.

[Busyy]

Hi allThank ye all for your very informative information- I should have been more specific in my first post !! Yes I had all antibodies test done , all of which were raised and the diagnosis of Graves was based on THYROID RECEPTOR ANTIBODY level was 18.9, anti TPO 1,326, thyroglobulin antibodies 1,654.

I should also have mentioned it’s my T3 that was always extremely high with T4 on the upper limit and a tsh of 0!

My dose is not just adjusted on my tsh my T3 and T4 is always considered also I should have been more specific apologies.

After 6 months with an endo who believed my eye symptoms were in my head due to stress I insisted on a second opinion and now pay private to another consultant who on my first visit mentioned my eye as the first observation she made which I was thankful of. For the last 5/6 months my new consultant has been doing my bloods every 3 weeks for the first 4 months and now every 6 weeks as she adjusts my dose according to my blood results.

I have also payed to see an ophthalmologist who started me on tear drops and did ct scans of my orbital to ensure damage wasn’t as bad as he had initially expected but his advise was I needed to get my bloods to improve before my eye would improve and follow up when necessary 🤷‍♀️

I had never heard of Selium for my eyes I will look into sourcing this thank ye all for this advise.

I continue to be under stress as a single mum with very little support but it’s getting a little easier as my boy gets bigger and more independent- he’s 2 now he’s busy but sleepless nights are something of the past thank god!

Grateful for all of your replies and thank ye x

[Egnig in reply to Busyy]

Yes Selenium for Thyroid Eyes.

[Buddy195 Administrator]

I would take 200mcg selenium every day for 6 months, then reduce to 100mcg day when symptoms improve. Don’t exceed 400mcg per day as this can be toxic. Some people eat a couple of Brazil nuts every day as these can be high in selenium depending on soil type- however, as the content of Brazil nuts is variable, I have stuck to a supplement instead. Do keep posting if you need any further support! 😊

[Busyy in reply to Buddy195]

Thank you so much for this advise,,is this over the counter or does it require a prescription?

[Buddy195 Administrator]

Benefit of selenium in TEDeced.squarespace.com/s/sele...

amazon.co.uk/dp/B005Z68WAE/...

These are the ones I took initially from Amazon (then reduced to 100 when symptoms improved)

I also followed a suggestion by ling to add lutein and zeazanthin for overall eye health; I definitely think this has helped me. This is one I’m currently using:

amazon.co.uk/dp/B01DI4QU76/...

I did trial black seed oil for dryness, but this only worked for a few months for me.

I also followed advice from another forum member and now get my eye drops on the NHS as dryness is an ongoing symptom of TED. Definitely worth asking GP or getting your endo/ ophthalmologist to support this. I now get Hyloforte on prescription but also like HycoSan (both are preservative free). I use eye drops liberally (as per instructions from ophthalmologist).

[Busyy in reply to Buddy195]

Thanks buddy

I will make it my job for today to get these supplements and start to take them straight away. I appreciate your advise and time to reply to me. I hope your eyes are improving and some day resolves - do they ever resolve ?

[Buddy195 Administrator in reply to Busyy]

Yes I’m pleased to say my eyes are looking so, so much better than they did 18 months ago, not 100% as they were but I can cope with that!

[PurpleNails Administrator]

Prescription is not required for selenium. It’s a widely available supplement stocked at chemists & supermarkets. Check the label for absorbable forms, selenium l-selenomethionine and yeast bound selenium are best, avoid selenite and selenate.

I’m shocked at your endo attitude. A specialist should be on the watch for this not dismiss it as stress related. I think this gets neglected quite often.

I’m starting this think a private specialist is the only way to ensure you have access to any treatment.

I’m hyper without antibodies (from nodule) but have many TED symptoms including worsen eye misalignment beginning in infancy. The GP said see Endo for referral, as looks like GO. I said is that likely as I don’t have Graves I have a toxic nodule and he said he didn’t know see endo.

Endo said eye problems nothing to do with thyroid it’s due to the diabetes. When I looked confused he asked when I’d been diagnosed with diabetes…..I hadn’t. So I went back to GP who said not high enough sugar levels for such symptoms nothing to do with it, see Endo

Endo got cross this time and said go back to GP as nothing to do with thyroid. So I did & GP advised see an emergency eye clinic run by select high street opticians, but they never had any appointments, & wouldn’t take an advanced booking as…booking strictly emergency only.

So even though I wasn’t yet due I booked an early sight test. The day before the appointment, after reading the pre appointment form, the store called me and cancelled saying I need an emergency assessment first. The emergency assessment was done over the telephone and the upshot was to have a sight test.

Once I actually had the test they supported a ophthalmology referral and recommended eye cleansers & eye drops. Much of what I was doing already I’m now a wait list for appointment. It’s taken months to even get a referral.

[Busyy in reply to PurpleNails]

Thank you purplenails

I’m shocked also at how you have been treated it’s so frustrating being dismissed and not treated correctly!!

Ya my first endo was very dismissive I had symptoms of eye pressure and sensitive to light and a constant gritty feeling in my eye and always felt like there was a foreign body in my eye - constant pressure migraines then after a few weeks of this the appearance of my eye changed and began to bulge and my eye lid retracted. My endo still refused to refer me to ophthalmology as he felt it wasn’t significant! It was then I sought a second opinion payer private and waited 2 mths but it was worth the wait!

Straight away the new endo diagnosed me with GO.

Since on a titration method of meds for my thyroid my eye has definately improved I don’t feel the symptoms are as bad and the appearance has changed slightly better but it’s still evident and at times gets irritated . I’m wondering would both eyes have been better to get GO in and would look some bit even rather than one abnormal looking eye . From all the great advise here my job today is to get Thoes supplements and start taking them straight away!!!

Thanks for the support