[Ski]

#1065959

Just a couple of things to mention.

First, while a very small population of Graves’ thyroid disease patients end up with the very worst symptoms of TED, there has been one study (a little morbid, they studied GD patients in autopsy), where they found that just about 100% of us have *some* evident TED changes. They aren’t sure yet whether the TED antibodies are completely separate from the Graves’ thyroid antibodies, or whether they’re incredibly versatile and can attack several tissue types (that’s unheard of, but lots of things were unheard of until they were proven). In any event, we DO know that it’s antibody action on the muscle or fatty tissue behind the eye (younger people tend to get more antibody action on the fatty tissue, older people tend to get more antibody action in the muscle tissue, and people "in between" get some of each), which expands the area taken up by those tissues and causes the bulging. The pressure you feel behind your eyes may well be a minor form of antibody action that just isn’t "enough" to push your eyes out. It may NEVER push your eyes out. You may just have a very mild form of TED.

Second, the doctor to evaluate your TED status is the ophthalmologist, not the endocrinologist. The disease path of TED is completely separate from the disease path of Graves’ thyroid disease, and nothing you do for your thyroid will change things related to your eyes (except, as you mention, the small chance of increased symptoms after RAI). The ophthalmologist is the expert (not the optician, not the optometrist). We recommend seeing an ophthalmologist affiliated with ASOPRS (http://www.asoprs.org) because they receive additional schooling related to TED symptoms and treatment. It IS possible to have compression of the optic nerve without bulging, but it is VERY rare. You can do your own little "test" by looking at something that’s very, very red (a Coke can is a good choice). Look at the object separately with each eye. If one eye sees the color as more "pink" than bright red, get thee to an ophthalmologist, and quickly. As I said though, it is VERY RARE, and you would likely be suffering extreme discomfort if this were the case for you.

There was one study done a long time ago which showed that 16% of RAI patients experienced "temporary worsening" of TED symptoms following RAI. It has not been replicated, but it is useful to know in case you have VERY bad TED symptoms prior to treatment for thyroid disease. For some people, they will choose another treatment option for fear of the possibility of increasing their symptoms even a little. For others, they will choose a concurrent course of oral steroids, which was shown to completely negate the temporary worsening effect (but of course steroids carry their own risks). That’s a discussion for you to have with the ophthalmologist. I had some gritty feelings in my eyes for a few months after RAI, but that was it. I have never progressed to "full on TED," though you could see some changes in my eyes "back when." Everything has since returned almost completely to normal for me.

Seeing an ophthalmologist should be your next course of action, since you’re so concerned. As with anything autoimmune, keeping your stress reactions to a minimum will be helpful. It’s not possible to remove all stress, OR stress reactions, but do what you can. It’ll help.

In the meantime, using artificial tears (NOT get-the-red-out drops) can help with the grittiness and discomfort. The drops you use today will help you tomorrow, so just get in the habit of using them occasionally and I’ll bet you find some relief. Things that are particularly bad on your eyes are breezy conditions, forced-air (like in an office building), flourescent lighting, and bright sunlight. Anything you can do to protect your eyes from these things will be helpful.

I hope that helps! Feel free to ask any follow up questions, that’s what we’re here for!

[waitman192]

#1065960

Agreed with everything Ski said. And you can have problems without physical symptoms. For me personally, I don’t have exophthalmus per se, however I do have significant changes in my eyes namely periorbital edema, visual field defects, and double vision in certain areas of my visual fields. It can be a little more serious because I did the radioactive iodine last week and concurrently started a 5 week course of prednisone because of the study ski pointed about the worsening of eye disease after radioactive iodine.

Your endocrinologist can’t actually say you have eye disease, but if they see Graves on at least a semi-regular basis, they should be able to notice something if you have it. But really, they should send you to an ophthamologist. (They are the ones that go to doctor school, optometrists are qualified to check your vision, and not look for other significant eye disease.) If you’re concerned, bring it up to your endocrinologist, and s/he’ll likely refer you out.

[genuinruby]

#1065961

Consider checking in with your primary care doctor to rule out whether or not it could be a sinus issue. I have been blessed with a mild form of TED which is slipping into the "cold phase" (diagnosed Jan 2008 after Graves diagnosis Fall of 2007), last December the pressure behind and around my eyes built up to where I felt that if I could just pluck it out of there I would feel relief. LOL Turns out that 2 rounds of antibiotics cleared it up, and it hasn’t been back.

Just my thoughts, hope you feel better soon.
Ruby in Reno

[Corinne]

#1018602

Hi,
I was curious about how eye problems start? If you look at me, my eyes seem fine. My Endo (by just looking at me) doesn’t think I have any signs of TED/GED. But, I commonly have itchy dry eyes that tear a lot. I also feel like I have some pressure behind my eyes, and my vision doesn’t double or anything, but it just feels funny, like there is something pushing on the back of my eyeball and it just kind of distorts things a little bit. (but not double vision, nothing actually doubles, and I can read fine and everything). Are symptoms like this the start of it? Can you have optic nerve compression if your eyes don’t actually bulge? I think its giving me headaches, it really feels like there is pressure on my eyes. Does this mean I will end up with TED or is this just something commonly experienced by many grave’s patients, even those who don’t end up with any eye problems? The whole "increased chance of eye problems after RAI" scares me. My Dr isn’t worried though, because she says I have no visible signs yet, but thought I’d get some input from you guys!
Thanks
-corinne

[Corinne]

#1065962

Thanks for the info guys. I think I will have to talk to my doctor at my next visit and ask for a recommendation for an opthamologist. The pain behind my eyes actually feels like its increasing, so maybe I should look into the sinus infection thing. My eyelids hurt a little bit when I rub my eyes too. But, I think I need to talk to someone about it, so thanks guys!

[Corinne]

#1065963

Oh yea, and how about looking at computer screens all day?! Have you noticed a difference between how your eyes feel if you do or don’t look (quite intentely) at computer screens?

[Ski]

#1065964

TED symptoms can absolutely be aggravated by long periods of work on the computer. We don’t see it literally, but the computer screen constantly "redraws" the image we see, and that’s stressful on TED eyes. That’s why it’s usually recommended that anyone who uses computers a lot (not just TED patients) take a break every 15 minutes or so, look into the distance, at least look away from the computer screen. If you have TED, you may want to take that break even more frequently.

[Bobbi]

#1065965

I have also heard that when we are looking at a computer screen, we don’t blink as frequently as we do when we are looking at the world around us. Blinking redistributes the tear coat on the eye, so our dry eyes become even dryer when we’re looking at the monitor for long periods of time. It can help to focus your attention on blinking, and also to keep a dispenser of the artificial tears handy.

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