[PAT1953]

#1018811

Do you always get bulging eyes with Graves. I have hyperthyroid and had uptake scan today and the lab tech said maybe graves. I have all the classic signs of hyperthyroid without the bulging eyes. I’m really worried about the bulging eyes. My research says bulging eyes can come even after your treated. Thanks for any feedback, Pat

[Bobbi]

#1067268

Yes, we can develop the eye disease at any point in time — before, during or long after treatment. Currently, it is thought that the eye disease is separate from Graves. Since I was diagnosed and treated in the late 1990s they’ve even changed the name of the eye disease from Graves opthamopathy to Thyroid Associated opthamopathy because folks who have never been hyperthyroid, but who have other thyroid diseases were turning up in enough numbers for the medical community to theorize that the eye disease has more to do with thyroid problems than just Graves problems. REgardless…..In one medical bulletin I read an article speculating that 100% of us have "some" interior eye muscle changes when we have Graves. Apparently with the advent of soft-tissue imaging techniques, our doctors were finding "some" eye muscle changes to be prevalent. Only a small percentage of us, however, develop truly bulging eyes and the accompanying difficulties.

There are some changes in the appearance of the eyes when we are hyperthyroid that have little or nothing to do with the interior eye muscles, but make it appear that our eyes are starting to bulge. The muscles of the upper lids retract (pull back) due to tightening of the muscles that control them (the lids). So, we get a wide-eyed look sometimes. The eyes are not actually protruding with lid retraction, even though it appears that way. This typically goes away when our thyroid levels return to normal.

If you become concerned about your eyes, the best course of action is to seek out a good opthamologist (the MD that treats eye diseases). There is nothing they can do to prevent the eye disease from occurring, but having your eyes monitored can be a comfort. If you turned up in the small percentage that develop significant problems, you would have a doctor you knew at your side, which is also helpful.

[susandemarco]

#1067269

Hi Bobbi,
I am scheduled to have Rai in January. I am 63 years old and have been on and off PTU for the past twenty years. The first time I took it for
eighteen months and went into remission without any meds for eight years. The second time, the same thing, and went into remiss, without
meds, for three years. After that the remissions were a lot shorter without meds. Now is seems I am on the meds, but as soon as I go off,
I become hyper again. I went to see my endo on Wednesday and she thinks I gave it enough time and that I shoul take the radioactive iodine.
Part of me agrees, but I am so fearful of the side effects.

The first side side effect is the eye involvement. My endo does not seem to think there is a problem, as I have had this disease for so
long and my eyes seem fine, that she does not seem to think there will be a problem.

The other thing is the weight gain. She tells me that she will be monitering me, and once I become hypo, as long as I am careful about my
diet there should not be a problem.

I feel as though, as all of us do, that I have no control over my body. I feel with the PTU that there is some control, except with the WBC and the liver
damage.

It just seems that the posts I have read on this site, there are not to many that have happy endings.

Right now, I am very confused, and would appreciate any input.

Thanks,
Susan

[Bobbi]

#1067270

In my opinion, you will likely experience more control once your thyroid is gone, and you are on a stable dose of replacement. We are only "technically" hypothyroid — i.e. we would be hypo most definitely without the replacement hormone. With the replacement hormone pill at the proper dose, we have normal levels of thyroid.

People see weight gain on PTU as well as after thyroidectomy as lost muscle comes back. And as the body’s metabolism normalizes. RAI is no different, although the time lapse between it and actually being able to go on replacement hormone varies, and that can come into play. But as long as you eat wisely, your weight issues should become normal over time.

RAI has not been shown to "cause" the eye disease to develop. It does, in some cases, aggravate the eye disease. In the article I read in the New England Journal of Medicine, it was thought that since RAI was shown to cause an immune system response, that the increased levels of antibodies temporarily would aggravate eye symptoms in those with the eye disease. That aggravation occured in less than 20% of the patients. In patients with serious eye disease, ANY increase in symptoms can be a severe problem. But in most of us, it is not as big an issue.

I wish you good luck with your choice,

[susandemarco]

#1067271

Thank you Bobbi for your prompt and articulate response. I do feel more confident after reading your response.

Thanks Again and have a happy Thanksgiving.

Susan

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