Graves' Disease Eye Problems...

[Deb__0__0]

  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.
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You have many good questions.  Unfortunately, there are still many unanswered questions about the effect of Graves' disease on the eyes.  In general, we know that there are certain receptors  on the eye muscles and fat surrounding the eye that are stimulated by the disease.  This causes swelling of the eye muscles and other tissues in the eye socket which causes the eyes to become prominent.  There are also changes in the eyelid produced by the disease makes the eyes appear more prominent.  Fortunately, your daughters eye changes resolved after the treatment was initiated and this is not unusual.  She is still a risk for changes again, especially if the thyroid levels rise during the treatment.  It is unlikely, that her eye changes would get as severe because you are likely to pick up on this earlier now.  It is also important that she see an ophthalmologist who is experienced in evaluating patients with Graves' disease.  They can follow her along during her treatment and they may be able to pick up some early changes if they occur.  There are some good medical and surgical treatments for those patients with significant residual eye changes due to Graves' disease.

This information is provided for medical education purposes only.
Sincerely,
HFHS.M.D.-JL
*Keywords: Graves' disease