[Anonymous]

#1149219

Hi Jan, Sorry but when you say “graves ophthalmology is a separate disease from graves disease itself” I have to differ with you. Graves eye disease is graves disease and that is why I was hoping that any spokesperson representing the NGDF would include information about it in any articles published.

Under NGDF – FAQ, What is Graves Disease – the eyes are talked about and under Symptoms – in the long list of Graves symptoms it states blurred or double vision and eye complaints such as redness and swelling.

The following quote is, I believe, from NGDF bulletin #2 “Graves’ disease IS a condition effecting the eyelids and tissue behind the eye in people who have a thyroid disorder. The name Graves is the name of a man who described the condition years ago. In the most common situation, a person develops swelling and build up of tissue behind the eye together with retraction of the eyelids when they are hyperthyroid. The condition CAN, however, occur without a person being hyperthyroid. Paradoxically in some cases, the eye condition can actually worsen after the hyperthyroidism is treated. The exact mechanism that causes the build up of tissue behind the eye with scarring and the retraction of the eyelids is not known. It is felt to be a substance by-product of some abnormal thyroid activity that is carried through the bloodstream to the orbit or may be carried through the lymph system in the neck to the orbit. The build-up of tissue behind the eye may be very severe, infiltrating the eye muscles causing severe enlargement of the eye muscles and compressing the optic nerve threatening vision. It may be less severe in which the eye is simply thrust forward although this does cause much discomfort, corneal exposure and disfigurement. The condition may be milder in which situation there is not a great deal of eye prominence but simply puffiness and retraction of the eyelids. All of these problems are distressing to the person who has them, not only from the standpoint of disfigurement but from the standpoint of discomfort and the fact that their eyesight and vision are placed at risk. In many cases the infiltration of this tissue into the muscles that move the eye causes scarring within the muscles which can produce double vision which may be permanent”.

Many of the NGDF bulletins refer to eye conditions and I feel it Graves Disease. Maybe some would differ with me but when I say I have Graves disease – that is what my Ophthalmologist says I have – and to me there is only one Graves disease. AND I was hoping that all problems and symptoms would be covered by any spokesperson even if they don’t experience eye symptoms at the moment. I hope this does not offend. I just wanted to clear up the way I feel.

Have a good evening and take care. SAS

[Anonymous]

#1050426

I would like to let everyone know that my sister, who does not have graves disease whatsoever, had graves opthalmology! How do we explain that one??? I am happy to report that she took massive quantities of predisone and by the grace of our grandfather spirit, was spared her sight! This happened to her when she was in the 14-15 year age bracket and has excellent vision with no surgery required as of today(she is now 35 years old).
People need to realize, graves opthalmology is a separate disease from graves disease itself.
I hope this clears up the confusion.

Wishing All Peace and Tranquility,
JAN

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