[Anonymous]

#1127426

I’ve been lurking here on the board since suspecting Graves in January (confirmed about 8 weeks ago). Eye trouble started last fall, with just some minor irritation and morning swelling, lid retraction, double vision and trouble finding “the right place” in my bifocals.

I strongly suggest doing *serious* shopping for the right ophthomololgist. The first I tried was a disaster – then found a fellow who lists his speciality as “diseases of the eyelid, tear duct and socket.” Perfect! Because of his focus (no pun intended), he sees a lot of Graves patients. This BB is a wonderful resource, but no substitute for the right doctor.

My own doc advised me not to tape my eye closed at night, because that can eventually damage the tiny tendons in the eyelid, causing a droop which would require surgery some day. Instead, I’m on lubricating drops every couple of hours through the day, plus a gel-lubricant at bedtime, to minimize drying out while asleep. I read and write legal fine print for a living, so if I’m having a “bad eye” day, where the drops are not providing adequate relief by mid-afternoon, I apply my night-time gel, and put a pirate patch over that eye. (Can’t see through the gel -smile) My co-workers had fun for a few days, looking for the parrot on my shoulder (the pirate thing, y’know), but everyone’s used to it now.

Keep searching for the right doc!

[Anonymous]

#1127427

I have been told that sometimes the eyes get better once treatment has begun. I have also been told that it is controversial whether radio active iodine makes eyes worse or not……so it is important to see a good upto date knowledgeable specialist….

[Anonymous]

#1039311

Hi Ricki,

I don’t have the eye disease, but I think I can cover a few of your concerns just because I’ve read all the messages from some people who do! I’m certain you’ll get a more comprehensive response from some people who’ve had the surgeries, but for now here is a little encouragement:

I’ve read a few stories of people here who have the problem with their eyes not closing all the way at night. You are definitely not alone on that score. As long as you know and deal with it, you are doing a huge service for your eyes. The better care you take of them, the easier this will be for you.

I do not believe that it is a given that your eyes will continue to worsen. It seems that the eye disease is kind of, well, capricious. It has no standard course and affects everyone differently. Also, after the “hot phase,” which has been defined as anywhere from 2 to 5 years, a lot of people’s eyes actually go back to something near their normal state. This is the point at which most people have surgery, as the stretching of your eyelids and underparts of the eyes can be fixed. The surgeries can aggravate the condition if done during the “hot phase.”

The thing to watch out for, specifically, is the swelling causing pressure on your optic nerve. Jake speaks of the “Coke Can Test,” which is simply looking at a Coke can, one eye at a time, and if either eye sees the red color differently, there may be pressure on your optic nerve. This would require surgery immediately, but this is RARE. It’s just an idea of what you need to look for.

And finally, your stress level can make your symptoms worsen, at least temporarily. Anything you need to do to be less stressful is ENCOURAGED. Take a hot bath, relax on the couch, do whatever you need to do to keep your stress level down. You need to take care of YOU! It seems a lot of us with Graves’ disease have been “chronic overachievers,” always taking care of everyone else and always being the “one who isn’t sick,” and so we need to shift that focus and give ourselves the TLC for a while.

Good luck, we’re all here for you. Check out some previous messages, you will learn a LOT, I guarantee. Do a search for “TED” and I’ll bet you locate a great deal of valuable info!

I hope that helps!

-Ski

[Anonymous]

#1127428

Just wanted to let you know that you are not alone! I was diagnosed 1 year ago this month. The best thing you can do is educate yourself about Graves. In my opinion, Graves does not get the respect it deserves from many of the professionals.

Best of luck to you.

[Anonymous]

#1127429

Thanks everyone for all the encouragement. I needed it. Since it was just yesterday being diagnosed I was feeling really low especially when I read some of the mail here. I am hoping to get good doc care. I need to make an appointment with my Neurologist since he is the one who tested for Thyroid first, otherwise I would still be thinking I had bad allergies.
I’m much better today and sorry for rambling on last nite about this. I could have something worse than this and thank god it’s treatable.
Hey,,, went shopping today and ofcourse that always helps me..

regards, Ricki

[Anonymous]

#1127430

Have you been to an endocrinologist? If not, you should make an appointment soon. My own family practitioner told me that in medical school, thyroid disorders are covered very quickly and in little detail. He told me that I am better educated on the disease than he is and have taught him a great deal! An endocrinologist would probably be a much better source of information. I’ve had Graves for exactly one year and treatment has helped me tremendously, so if you do have Graves, you’ll be well eventually. Good luck!

Tracy

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