[shakira7]

#1059423

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

[Ski]

#1174611

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.

[PolishTym]

#1174612

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.

[snelsen]

#1174613

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

[shakira7]

#1174614

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.

[WWWI2]

#1174615

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

WWWI 2

[shakira7]

#1174616

Hi everyone,

After obsessively taking pictures of my eyes since sept 2013, I’m noticing that my eyelids have not changed since the first time I freaked out back then. The only TED symptom I have so far, is the swollen upper eyelids; so far, no dry eyes, no lid retraction, no bulging eyes, no light sensitivity.

2 opthalmologists who told me they know what TED is (cause I tried explaining them about it), however, they don’t see any symptoms. – this was back in oct 2013. One of them flat out told me he doesn’t know why the eyelids are swollen, the other one thinks it’s part of aging (I’m still in my 30s…)

It’s not that I don’t trust doctors, however, I still feel that I have a mild symptoms of TED, even though I’ve not yet been diagnosed with it. I can’t think of any other reason as to why my upper eyelids got swollen since last summer.

I still look at myself unhappily in the mirror, hoping when/if I will ever get back my normal eyelids.

I’ve been taking 3 Brazilian nuts/day, put ice pack on the eyelids every morning. Not sure if these are supposed to help.

Also, is it true that tomatoes, eggplants and potatoes can worsen TED?
I hate tomatoes, so I can live with that. he he.

After an extensive research all over the internet, I found a reputable ocular-plastic surgeon, trained in US, who does a lot of blepharoplasty, and he seems to know well about TED, according to his profile. I am trying to get an Rx to see him, hopefully in February.

If my eyes remain like this, then I think a blepharoplasty would be sth I’ll look into, to, at least, get rid of the fatty upper eyelids.

Does anyone know what are the risk, if I do blepharoplasty too early?
I’ve heard about scars not healing fast.

In any case, I won’t push the ocular-plastic surgeon to do sth he doesn’t feel it’s a good timing.

[Kimberly]

#1174617

Hello – Glad to hear that you’ve connected with a surgeon who is knowledgeable about TED.

The risk with doing *any* surgery for TED if you are still in the active phase is that your eyes could change, requiring another surgery.

The foods you mention are classified as “nightshades” — I’ve heard some anecdotal evidence that some people with arthritis avoid these, but I have not seen any really good research on this.

Take care!

[Author]

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