[DianneW]

#1073727

Amy,

Pain when moving the eyes can be a symptom of eye muscle swelling that occurs with Graves’ Disease. It’s possible to have a degree of eye muscle involvement and fat deposits behind the eye that don’t necessarily show or result in a lot of proptosis (bulging). I recommend your son be examined by an ophthalmologist who can evaluate the need for imaging studies. Since your son is scheduled for RAI soon, if he has any serious ophthalmopathy that might be exacerbated, you would want to know. (I guess that’s probably why you’re asking?)

[amyl]

#1019729

Hi,
I was wondering what type of eye problems you can have with Grave’s. I have read that the eyes can bulge, get very dry, and they can get itchy. Is there anything else? My son was having trouble with pain when he moved his eyes. The eye doctor didn’t think this was related to Grave’s but she admitted that she doesn’t have alot of experience with children having GD. Are there any other eye issues that I haven’t already mentioned?

Thanks!
Amy

[amyl]

#1073728

Thanks Dianne,
My son had an MRI a couple of days ago and the doctor said the results were "normal". They were doing the scan to check his pituitary gland and his occular muscles. I think I need to talk to her to make sure the muscles didn’t show any signs of inflammation.
If my son is having eye issues related to GD, will RAI make those issues worse? He’s scheduled to have RAI next Tuesday (2/17). I’m sure I can’t get him in to see an opthamologist before Tuesday..I don’t even know any opthamologists in my area. I’m thinking I better check with our Endo to see what he thinks.
I really wish there was just 1 type of doctor that has all of the answers. I seem to be getting bits and pieces from each doctor. I learn more from this site about how the symptoms are all related that I do from our doctors. Does anybody else feel that way? Should I post-pone my son’s RAI?

Thanks so much!
Amy

[DianneW]

#1073729

Amy,

If the MRI showed normal ocular muscles, that’s a good sign there’s no Graves’-related inflammation going on. That’s what "normal" means. You probably won’t need to see an ophthalmologist before Tuesday. I know it’s difficult to get an appointment on short notice anyway. An MRI is highly diagnostic for soft-tissue changes, but do talk to your son’s endo if you have any concerns at all about this.

If there was inflammation in his eye muscles, RAI could make it worse, though it could be prevented by giving him steroids along with the RAI. It’s also possible for RAI to cause the onset of TED, though when this occurs it’s mild and temporary, so giving steroids to prevent this is not ever recommended. I’m only mentioning is so that if it should occur you would keep it in perspective.

I understand what you’re saying about not having one doctor who can educate us about every aspect of this disease. They’re all so busy, and it’s difficult for them to know how much information each patient wants, and what level the patient/family is capable of understanding that information, so I think often they just give skeletal info in the simplest terms and wait for any further questions, while they manage their end.

Talk to his endo again about the MRI results and I think you’ll be reassured in that regard that this isn’t a reason to postpone your son’s RAI.

Best wishes,

[amyl]

#1073730

Thanks again Dianne!
I was able to talk to the nurse at our Internist’s office (she ordered the MRI) and confirmed that the MRI did not show any sign of inflamation of my son’s ocular muscles. I also talked to the nurse at our Endo’s office and she relayed my concerns to the Dr. He feels confident that RAI shouldn’t impact my son’s eye problems as they don’t appear to be related to GD. I sure hope he’s correct and from what you’ve written, he probably is. So, here’s my next question. What is TED? I’ve read references to it on this Board but I don’t know what it is.

Thanks!!!
Amy

[Ski]

#1073731

TED is a separate but related autoimmune condition where the antibodies attack the tissues behind the eyes and it results in swelling. Since the eyes are in a cone-shaped bone cavity, when the tissues behind swell (either the fatty tissue or the muscle tissue), there’s nowhere for the eyes to go except outward, so that’s the bulging. In some people, the swelling behind the eyes results in the fat & fluids being pushed out around the eye instead, so that’s another way it can manifest.

TED has a "hot phase" initially that lasts anywhere from one to three years (smokers typically experience the longest ranges), where changes are frequent. Afterwards there is usually a period of stability, followed by an improvement, followed by the final, stable state. It’s in that final state that we typically look to surgical correction, because surgery in the hot phase can exacerbate and accelerate symptoms. Still, surgery must be looked at as an option if the optic nerve is in danger of being compressed, because there’s no healing that. Once it’s compressed, the vision in that eye is gone forever, so surgery is worth the risk.

[amyl]

#1073732

Do you have any idea what the chances are that my son will develop TED? I think that would just "put him (and me) over the edge". He’s terrified of his eyes bulging. His eyes are actually very deep set so I’m hoping that will be an advantage for him. I’m feeling very overwhelmed with this disease. It seems that the symptoms/problems are endless. Does anybody every have a mild case of GD? Does everybody develop TED? Can TED be mild? If the RAI is successful, will my son be done with GD? If not, will his symptoms be more mild b/c he had RAI?

Thanks!
Amy

[Ski]

#1073733

Hi Amy,

The most severe symptoms of TED are NOT common, and they are even less common in young patients. Unfortunately, there’s no way to say what his experience will be, because the most common scenario is one thing (typically symptoms appear within one year before or after thyroid symptoms), however there are patients who fall far outside the typical (some get TED ten or more years after successfully treating their thyroid), so it’s impossible to say what will happen with him.

Young patients hardly ever get the eye disease, and if they do, they usually get it in a way that more easily resolves itself at the end of the process. Let me explain.

At our most recent conference one of the eye doctors told us that there are two ways TED can manifest ~ one is by affecting the muscle tissue, the other is by affecting the fatty tissue. We saw CAT scans of three new patients, one very young, one middle-aged, and one older patient. The very young patient had almost all the involvement in the fatty tissue. The older patient had almost all the involvement in the muscle tissue. The middle-aged patient had about half and half. This was meant to illustrate the typical involvement, based on age at diagnosis, so in general, young patients (IF they exhibit the bulging eyes) are affected within the fatty tissue, which resolves itself much better by the cold phase, returning almost completely to normal.

But the most important thing to remember is that it is not likely at all that he will experience the worst of TED. You may want to get him in to see an ophthalmologist just for a baseline appointment and to allay your fears right now. That gives two advantages ~ first, you’ve already begun a relationship, in the event any changes begin to happen, and second, the doctor now knows what your son’s "before" face looks like, just in case.

[Sjefferys]

#1073734

Before going to a doctor and putting your child on a drug, try Morning/Evening compress. Get clean washcloth as hot has your hands can stand. This will provide stimulation then gently rub eyelids front to back. The eyes will moisten and free the eye of crust and oil.

If you have to go to doctor start with eye drops the best is prescribed product OPTIVAR.

[amyl]

#1073735

Thanks for all of your responses. Ski, you’ve made me feel very relieved…thank you! It’s a relief to know that if my son does develop TED, it shouldn’t be too bad for him.
Take care!
Amy

[Amanda]

#1073736

I’m glad your son’s eyes aren’t being affected. That’s was my biggest fear when I was first diagnosed with Grave’s, back then I had no idea about the varying degrees of TED severity and I just assumed that I was going to have severly bulging eyes.

A question for Ski: I have been told that once TED resolves it rarely reocurrs, is this true for the most part?
Amanda

[Ski]

#1073737

Yes, once it’s gone through the entire curve, that should be it. That can take a few years, but once it’s over, you should be done.

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