[Carito71]

#1059181

Hello everyone.

I’m still so new at GD that I don’t know much about TED. Can someone please help me with it?

What are the statistics for it?

Does everyone with GD get TED? If not, who does?

Does everyone develop problems to where they will need surgery at one point or another?

When does TED take place?

Is there a specific test/blood test, etc that lets one know one will get it?

This disease keeps surprising me every day. Just when I think I know what to look for as symptoms, something else pops up. I don’t want to have eye problems on top of everything else.

I did read that smoking increases the symptoms. I don’t smoke so that is one less thing to worry about.

Thank you for the information,
Caro

[naumanb]

#1172762

Not everyone gets it. My Endo told me if you smoke it can increase your chances significantly. If you know who Marty Feldman is, he was a comedian, he had the well known bulging eyes from Graves’. He also smoked like a chimney from what I heard. I have a very slight bulging to my eyes and my eyelids move slower than most others according to my Endo, but he said the Methimazole, once balancing out everything, should make my eyes return to normal, unless I were to smoke. Hope this helps.

[Carito71]

#1172763

Hello Bri.

Yes, I’ve seen pictures of Marty Feldman. If you type Graves under Images in Yahoo, his picture comes up.

Thank you for the information. My Primary Dr. told me to see an Opthalmologist when she saw my TSI #. My eyes look as always … I think. My husband and mom seem to think so too. I look at pictures and I don’t see a change. They do itch some times though. I have allergies and maybe that is what it is. Right before I felt sick though I remember them bothering me a lot one night. I got an ice pack and put it on for a while. That helped a lot.

Hope your eyelids return to normal soon.

Caro

[naumanb]

#1172764

Well hopefully the Opthalmologist gives you some reassurance. If it is barely noticeable than I would think it will not worsen as long as you get treament. I also did not notice mine but I could feel a slight pressure behind my eyes all the time. Mine just makes my eyes look a little bigger, but not much. My family said they can see it slightly. Doctors can see it much easier because they are trained to. I hope all goes well and your eyes get better and do not worsen!

[susanf]

#1172766

My doctor said the same thing about my eyes, but I nor anyone else can see a difference. I have noticed feeling pressure behind my eyes, as if I have been crying a lot, which isn’t the case. My concern is RAI and having TED, even though slight the RAI could make it worse.

[Bobbi]

#1172767

Some people’s eyes protrude, without their having TED.

As to who gets TED, there was an article long ago in the newsletter of the American Thyroid Foundation, that speculated that it is possible that all of us, 100% of those of us who have Graves, get “some” eye muscle changes associated with TED. With the advent of soft tissue imaging techniques — like sonagrams, MRIs, etc. — our doctors were finding that an awful lot of us had TED type muscle involvment, even though we were asymptomatic for TED.

The point is that many of us do get the eye changes. Getting “some” eye involvement, however, does NOT mean that we go on to develop horrid TED eye problems. A very small percentage of us develop the horrible eye problems associated with TED. Yes, if you smoke, or if you ever have smoked at some point in your life, your risks of developing more serious eye symptoms increases. Even then, you may not get horrific eye disease. But there are also folks who did not smoke, who develop significant TED.

My point? Don’t panic. You may indeed see eye changes. It is quite likely if you are looking for them, you will find some. Don’t panic, but also do not take things for granted if you are not a smoker. Start seeing an opthamologist and learn how to properly care for the changes in tear quality and other aspects of the disease that can have an affect on the health of your eyes.

[Carito71]

#1172765

Hello Bri, Susan, Bobbi,

Thank you for your messages.

Bri, Susan, as of right now, I haven’t had any pressure thank God. Just the irritation that I have always attributed to allergies. I have had eye irritation since I was a little girl. I remember my parents having to put an ointment on my eyes when I was about 7. I have seasonal allergies and allergies to gluten and yeast so I have always had problems with my eyes feeling itchy and red. Who knows, maybe it was GD all along.

Bobbi, thank you for the wise advice. I will make an appointment with my opthalmologist next week. What do you mean by “Some people’s eyes protrude, without their having TED.” You mean the general population’s eyes protrude?

I look at my eyes every day and every time I get sad thinking that maybe they are changing. I have taken many pictures of my eyes before. I pulled up some pictures I took early this year and they looked caved in. They don’t look like that anymore. When I took the pictures, I didn’t think anything of it but now looking back, I wonder if they were changing then and they have now gone back to looking they way they always have. They definitely look tired. I’ve been so so tired that it makes sense. My husband says that they are starting to look better b/c before I had dark circles around them. That is b/c I didn’t sleep for a long time.

Thank you again
Caro

P.S. I’ll try not to panic.

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