Anonymous
Greetings,
I might be able to shed some light on your questions. I am doing this from
memory so be careful about what you think you heard (or in this case read) what
I said.
About 15% of people with GD get the Graves eye involvement.
About 90% of folks who have RAI do well and have no problems after the atomic
cocktail. Like Bruce said those who you are seeing here are the 10% who have
on-going problems.
There is some corrolation between Graves eye disease and RAI. We have a few
bulletins on the subject. Go to the top of the page and click on the NGDF home
page and go to bulletins. I was told that there was a small percent chance my
eyes would get worse after RAI. I had severe proptosis and in hindsight RAI
probable should not have been an option for me. Had I to to it over again I would
have opted for the surgery. Bruce and I have talked about this and for some
reason it does appear that if your have had the tyhroid removed the Graves eye
disease is stopped a a vast majority of cases.
Anyone with GD whould see a eye doc right away. Changes happen gradually and
you may not notice until it is very late or until damage is done. Color is the
first thing to go. Reds, followed by browns then greens. My cousin had GD and
he worked for Coke Cola and he went to his boss and asked when they started to
change the color of the cans (red looked brown) and his boss thought he was going
nuts. That was his first indication that he had a problem with his eyes.
I kind of opened a Pandora’s box when I mentioned my cousin. I mentioned him in the
past tense. I will get e-mails on did he get better, is he in remission etc. The
answer is a very painful one. Tiger was diagnosed at 23 with GD. He had a hard time
accepting that he had a problem and looked for alternative meds and refused to take
his meds. He ended up going into thyroid storm and into intensive care. During this
whole time I kept in close contact with him and his Mom and Dad. Tiger’s wife left him
when he became ill and took their child with her. Can’t say as I blame her since Tiger
was not taking his meds and would go into fits of anger and have heart attacks. We all
tried to get Tiger help but he was raised in a family where it was considered un-manly to
ask for help. Tiger took his own life by shooting himself through the neck in July of
this year. The day he killed himself is the day the BB came on-line and I started to
get calls for help and answers. So now you know why I caution about alternative meds
and trying to find a cure. It was very hard to be upbeat and answer questions when I felt
at the time I let Tiger down. I know I did not let Tiger down now. That is also why some
of you receive personnal phone calls from me. I don’t sleep some nights worring about
some of you. So now you know there are people who care and are there for you. Last
month I talked to a lady until well past 1 AM getting her through the crazies as she put it.
Well got to go. Got myself all misty eyed again. I have said it before and I will say it again.
I have GD and life can be good.
Regards,
Jake