Help regarding eye disease graves

[Butterfly87x]

Hi all so now that I’m in the hyper/graves category I’m trying to just learn as much as I can. I was doing all the research before on hashimotos but now that’s I’ve gone to the other side I need more info on graves...specifically the eye issues.

So my questions are as follows:

- is the eye problems only with people with graves antibodies or graves symptoms...I know people might say that it’s not graves without the antibodies but I have been told now by two endos that going by my labs and my uptake scan it definitely is graves, they say my specific case is rare and they haven’t seen it much...antibodies are in the process of being tested but anyhow is the eye problems caused by the antibodies or the high t3&4 is my question.

- is there anything you can do before the physical symptoms of the eye disease show, I.e I’ve been hyper now for months before being put on meds so does this put me at higher risk of having eye problems and if so once I start the meds will that decrease the chances of them being affected?

- if I go to an opthalmologist now with no signs of eyes being affected yet will they be able to tell if it’s starting?

Sorry for all the questions I’m just worried about this after reading some other people’s cases and up til now I haven’t had much of this topic covered by my endo he just took a quick look at my eyes and didn’t give any more input.

Thanks

[Greekchick]

Hi Butterfly,

To your question - Graves eye disease is caused by antibodies that specifically attack the tissue behind the eye. The blood tests (TSH, T3 and T4) simply indicate your thyroxine levels - and does not indicate specifically eye disease. Only 25% of Graves patients develop the eye disease.

You can have Graves thyroid disease as I did without having any Graves eye disease. And just because you have antibodies does not mean you will ever develop Graves eye disease even with thyroid involvement.

You cannot tell prior to developing symptoms whether or not you will get eye disease. If you are concerned, you should have an ophthalmologist follow you - they can measure your eyes on a regular basis to see if there are any changes in the size or condition of your eyes. Did you ask your endos about this - and what did they tell you about the eye disease? Do you have symptoms?

You should be monitored on a regular basis by both endo and ophthalmologist and watch on your own for any changes in your eyes. There are also different degrees of eye disease - some people have mild symptoms and others have more severe symptoms. You also need to keep your disease in check through your meds and diet (vitamins are also recommended by some on this forum). Have your bloods monitored regularly.

Here’s a link that may help you:

btf-thyroid.org/information...

It’s quite comprehensive in its description of Graves eye disease.

Wishing you well and good luck with your upcoming move! All the best.

[pennyannie]

Hello again Butterfly

The most complete research tool I have found regarding Graves Disease is a book by Elaine Moore entitled Graves Disease A Practical Guide.

This lady has the disease and found very little help herself in the late 1990's so wrote the book to help other people as well as herself.

She has now a Graves Foundation in the States and runs a very comprehensive, well researched and respected website open for anybody to use to find out more about this apparently " elusive disease " when mainstream medical treatments leave us with unanswered questions.

Medical protocol will obviously be slightly different, but there is a wealth of knowledge with which to educate yourself, and also along with this amazing site without which I wouldn't have got my life back.

[rosie64]

I have graves too, with TED. As far as I know: eyes can become affected even after symptoms have subsided or are under control. It is antibody related and affects eyes as the tissue in the muscles behind your eye are similar to your thyroid. Apparently it is more likely to develop if you are a smoker, so best advice would be stop smoking if you do, and get your antibodies under control if you can. In addition to Elaine Moore’s very good book and web site, I read a good article recently about controlling antibodies with Hashimotos. I can’t guarantee but I suspect a lot of the advice applies to graves too.

thyroidpharmacist.com/artic...

[ling]

This may be helpful -

Thyroid Eye Disease: Its Causes and Diagnosis

reviewofophthalmology.com/a...

It is paramount to keep the Graves under control. That will go a long way to keeping TED in check.

TED once developed, is a condition by itself. And if you had previous eye conditions eg. Conjunctivitis etc, the TED could affect especially the affected eye/s.

Most importantly, please confirm you have Graves. The antibodies to test for are the TraB antibodies.

[Butterfly87x]

Hi all thanks to everyone for the help and advice. Will check out all the links! Started carbimazole today finally so just a waiting game now the next few weeks to see if it works and hopefully feel a bit better!

[AshleighJade]

The worse mistake I made was using radioactive iodine to discover if I had graves. The radioactive iodine caused the TED to become visible. It expedites the TED. Please be careful. I wish I had known.

[ling in reply to AshleighJade]

What was the reason you got RAI?

[AshleighJade in reply to ling]

It was the Radioactive Iodine Uptake. The test used radioactive pills in testing of the thyroid.

[ling in reply to AshleighJade]

Ok the uptake.

Yes have read here about people similarly affected.

Actually I don't understand why this test is required to confirm Graves. Were you tested for Graves antibodies?

[AshleighJade]

I have Graves and TED. Had TT and orbital decompression.

[Butterfly87x in reply to AshleighJade]

Yes I definitely wouldn’t see RAI as an option as I’ve heard this too many times now that it can increase chances of TED.

Can I ask u though before u had any visible signs of problems with your eyes did you have other symptoms to show it was starting?

For about a month now every morning I wake up my eyes are so dry and just uncomfortable, they don’t feel like that the whole day but it’s every time I wake up then after about half an hour they are fine. Really worried this is a sign of ted starting.

[ling in reply to Butterfly87x]

Are u using eye drops?

[Butterfly87x in reply to ling]

No I keep meaning to buy them will definitely start soon.

[mindfully-aware in reply to AshleighJade]

I’m having to make the surgery decision now. How did the operation go and did it work?

[ling in reply to mindfully-aware]

Are your symptoms not controllable by medication?

Do u have Graves?

[AshleighJade]

None. No signs.

[ling in reply to AshleighJade]

That is so unfortunate : (

[cgauthie]

I had both graves and ted (with post surgery )

and have been in remission for 1 year. Antibodies are

Almost 0. Go gluten and dairy free and take vit d c b selenium.

Takes about a year to start

To subside. Read Amy

Myers books. This is how I reversed it. Make sure you have an Opthamologist who specializes in it. Most important is keeping thyroid levels stable or your eyes will

Be affected.

[Butterfly87x in reply to cgauthie]

Good advice I plan on implementing all that. Hoping to make the change to go gluten free soon. My thyroid levels still haven’t stabilised since I started being hyper in January but I know carbimazole takes time so I guess I will see.

[cgauthie in reply to Butterfly87x]

It takes about 4-5 months to see effect of gluten

and dairy removal. Then

You will

See changes as well as

Weight loss. It’s hard

To go

Cold

Turkey and part time doesn’t work.

My endo threatened to remove my thyroid and I went on a mission

To fix myself and it worked. I was diagnosed in 2017. Now lead a

Normal life in remission.

Also

Invest in a Fitbit as heart rate is a factor. You will probably have to go on beta blocker as well. I did but I’m off it all now.

[Greekchick in reply to cgauthie]

Hi cgauthie,

So glad to hear a success story like yours! Remission is such wonderful news. I tried gluten free and eliminated dairy from my diet a long time ago, but it didn’t help me.

Hope you stay in remission permanently!

[cgauthie in reply to Greekchick]

Hi I found it took about 6-8 months with no cheating to help

Me! It takes many

Months to leave

Your system !

[Butterfly87x]

Yes I’m on propranolol now since the last month, I definetly want to try the gluten free approach and see if I can feel a difference because I have hashimotos and graves antibodies and I’ve read too much about the benefits of gluten free to ignore it. Not going to lie though I won’t find it easy at all as bread & croissants are my main food group lol but with the way I’m feeling anything is worth a try to make myself feel better!

[cgauthie in reply to Butterfly87x]

It was so hard for me as well. At first I was gluten free during week and not weekends but only saw the benefit after entirely gluten and dairy free for 6-8 months! I found I was better cutting it right out as the replacement items aren’t that great. Let’s stay in touch

In case you have any

Questions for me! Make sure zinc is added as well as a supplement !