Graves' Disease Eye Problems...

Posted By Deb on January 23, 1999 at 22:15:11:







At age 8 my daughter developed bulging eyeballs and a large goiter, about a year after the start of a mystery illness which was slowly progressive.  Finally it was diagnosed as Graves' Disease.  Her eyeballs were really bulging by that point, the kids at school called her "bug eyes" and she claimed she didn't want to wear her glasses for reading because she could feel her eyeball touch the glass.  Anyway, she has been treated these last six years with anti-thyroid drugs.  Several months into the therapy the eye problem resolved.  She is down to a low dose of Tapizole (to block the production of thyroid hormone).  Anyway, she is 14 yrs old now, and the eyeball bulging has not returned.  In fact, I thought we were going to be able to discontinue the medication soon.  However, the doctor says her goiter has not reduced at all, and is worried that after six years of treatment, the thyroid gland is still at least four times enlarged.  There is constantly talk of maybe trying once again to stop the meds in the
summer, as a trial (2 previous trials have failed resulting in extreme tachycardia and heat intolerance early in the trial).  I am wondering about a couple of things connected to this disease and her eyes.  First, I never understood why her eyes got so big to start with....by what mechanism does the overactive thyroid cause the bulging eyeballs?  Second, since they resolved with just the medication, is it likely that the bulging will never come back...that is, is that symptom usually a onetime thing?  Third, if the Tapizole is stopped again (and if she is able to sustain a longer trial off the medication without the other more noticable symptoms recurring), how likely is it that the eyeballs could bulge again (and if so, could that be dangerous to her eyesight?).  When they bulged the first time, nobody noticed in the early stages, not even the pediatrician.  It came on very gradually.  At one point, I thought her face looked funny and he told me she was going through a stage of being a FLK (funny looking
kid).  Both the eyeball problems and the goiter developed so gradually, no one really noticed.  It was first noticed when someone saw her that hadn't seen her in about a year.  I am afraid this will happen again....what if nobody notices in time?  Finally, the endocronologist tells me the size of the thyroid indicates that the Graves' Disease is still active, at least to some extent....does the presence of a goiter or the lack of the goiter shrinking have any influence on further development of eyeball bulging?  Is this rare to happen in children?  I've never met another parent with a child who has developed this illness.