[Anonymous March 5, 1998 at 11:37 am Post count: 93172]

#1152241

Hi, Emily:

No, if you get some eye involvement, it doesn’t always get worse. Apparently the newer types of non-invasive tests (like MRI’s etc.) have suggested that all Graves’ sufferers may have some eye involvement. Most of us don’t get the clearly observable type, but the newer tests have shown that eye involvement is a lot more prevalent than they used to think.

In a recent article I read about aggravating factors for the eye disease, a study was cited that had shown that people who have RAI AND steroid treatment (at the same time) do not have ANY increased risk of worsening eyes. So it sounds like your doctor is taking your eye swelling seriously, and doing what is known to try to prevent the RAI from making it any worse.

As to the “why” of it, why after several years your eyes could be beginning to change, the antibodies, once formed do not go away. They can wax and wane in numbers, and the reason for this fluctuation is unknown, but they don’t apparently disappear. This is where research into the immunological aspects of the disease could be really helpful. But right now, doctors don’t have a way of treating the CAUSE of Graves’, only the results.

Wishing you good luck, and good health.

Bobbi

[Anonymous March 5, 1998 at 2:01 pm Post count: 93172]

#1051685

I just got back yesterday from seeing the endo. I haven’t got my blood test results back yet, but she remeasured my eyes and said they were a little more swollen (19 mm? cm?). I realize to some of you that is nothing compared with your suffering, but I am scared now that it will get worse. If you have Graves Eye Disease does it always get worse? I am also planning to have RAI treatment in the next couple of months and she wants to put me on steroids for a month when I get it done. I’ve had Graves disease for at least four years now – why would it get worse now? Thanks for letting me ramble.

Emily

[Anonymous March 5, 1998 at 2:46 pm Post count: 93172]

#1152242

Dear Emily
Don’t ever think your just rambling,if it’s inportant to you then it’s inportant to us.I also have had graves disease about 7 years I guess it has been now and my eyes have just gotten really bad the past year or so,don’t have a clue as to why they would pick up and start where they left off last time, but thats the way it looks to me,and as for your measurements Emily did they measure them more then once? I would have them measured every time I went in to see the doctor,just so you can compare,as my eyes were 29mm in both eyes and yesterday they were 28mm in one and 25 in the other,so needless to say I was very glad we have measured before or I would not be feeling this hopefull feeling like I have been since he told me. I feel now maybe it is all starting to settle down now,and if it’s not thats ok too at least I feel hopefull and have not felt this in along time.Hope this helps you abit Emily.Take care now Barb

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