Hello everyone,

What are the chances / percentage of Graves disease patients developping TED after their Graves disease treatment?
I read different things everywhere; some say 80% of Graves disease patients will develop TED, some say 2%, some say RAI increases risks the chance of getting TED…

Does every Graves disease patients need to see an opthalmologist?

Has anyone only has Graves disease in the beginning and then later on with TED?



Shakira7

Hi Shakira,

The majority of people who have TED symptoms requiring treatment by an ophthalmologist experience it within 18 months of their Graves' diagnosis, but TED is fairly capricious – it happens to some people before they have Graves', some people while they have Graves', some people long after they've been successfully treated for Graves' (our own snelsen from Seattle was stabilized after Graves' treatment for decades before TED occurred with her). I think the variation in percentages has to do with where you draw the line. I've heard that Graves' patients, when examined post-mortem, ALL have some evidence of TED in the tissues of their eyes. Only somewhere around 15% (someone correct me if I'm wrong, please?) will have symptoms requiring interventions and surgical corrections, and a small percentage of THOSE will have the worst symptoms.

As for whether every Graves' patient needs an ophthalmologist, well, that's the topic of some debate, but here are the basic points. Some suggest that it's wise to have a baseline appointment with an ophthalmologist in order that the doctor get a good idea of your “before” state, in other words, where your eyes sit in your face normally, so that they stand a better chance of helping you return to that state after TED. The argument against it is that odds are you may never need to go back, the doctor may stop practicing before you need them, and perhaps a good picture of your “normal” face would be enough, if it comes to that.

TED is an autoimmune disease, and symptoms can be exaggerated by anxiety and stress, so some of the best advice is not to worry too much about it. If it happens to you, it's a tough road, but at least you can be comforted by knowing that there are dedicated professionals learning more and more about TED every day, and surgical corrections are better all the time.

Nice reply, Ski.

For what it is worth, shakira7, my endo had me switch to an ophthalmologist after I was diagnosed so the second doctor could look for any developments.

Hi Shakira,
Yep, people have Graves' in the beginning and develop TED later (: I am living proof.
So here's my story!

I developed Graves', then had a sub-total thyroidectomy, when I was just 24. (They don't do sub-total thyroidectomies anymore.) I developed TED over four decades later. My eyes were fine all those years. Then, (of course!) when I was in my 40's, i got magnifiers from the drug store.

But from a TED point of view, I did not even know about it. (and I have worked as an RN in health care for many years.)
I am sure my eyes were fine until they weren't! If I had gone to an eye doc, simply because of going from age 24 to in my 70's, the baseline would not have been helpful. Simply because of the passage of time. (kinda like most people in their 40's who begin getting magnifiers at the drug store!)

My thinking is that if you are not having symptoms of TED now, it is kinda up to you whether to get a baseline eye exam. Actually, it is a bit of a challenge to find an ophthalmologist who has even HEARD of TED. Many of them are not familiar with it, or they read about it in med school.
Do what feels right for you.

In my almost three years of TED, the most important thing is to have a good photograph of you. I think I have a very advanced case of TED. As Ski said in her very helpful post, and I am suggesting, that most Graves' people will never have heard of TED, nor will they have it!

Welcome to our world. This is a very reliable website. There is a lot of crap on the internet.
Shirley

Hi Shirley,

Thank you so much for your reply and sharing your experience.

So you're an RN? WOW. I admire every RNs, it's such a demanding job. I wanted to go into nursing, however, I've come to conclude that it's not for everyone.

I scheduled an appt with an eye doctor next week.
My vision has been fine, but i think it would be a good idea to get checked up.

Yes, I agree that this is an awesome website. I'm really really grateful to have found this forum; it's been a great support for me ever since I was told that I'm hyperthryoid.

Thank you, Shirley.

So just for grins I went to see an Ophthalmologist whom I was told had some expertise with Graves opthomopathy/TED.

Whether he's right or not I don't know, but he told me that if when looking in the mirror straight on, I can see any of the whites of my eyes appearing above my iris, then it's time to have it looked at for TED.

Put this in the “for what it's worth” category

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