AnonymousNovember 5, 1996 at 8:38 pmPost count: 93172
Great point made Dorie! I too have met people that had Graves’ with no major problems. Thank you for keeping things in perspective!
BruceAnonymousNovember 6, 1996 at 12:52 amPost count: 93172
This posting is especially for those newly diagnosed and/or new to the
support group experience. The following thoughts are pulled from a
note that I sent to another GD patient that I met right here on the
Internet support group
Unfortunately, this is not my first experience with a major disease (you
all know, one with a name and support groups). For many years I suffered
from endometriosis. Endometriosis (often referred to as “endo” — I
am having trouble keeping my diseases straight here) is a gynecologic
disease. Very persistent. I was fortunate to find an excellent surgeon
on the other side of the country, and I now consider myself cured.
One thing that I have gained from my experience with endo (as in
endometriosis) is the ability to view support groups in perspective.
Support groups can be life savers. I never would have found the best
endometriosis surgeon in the country (and probably the world) if it
hadn’t been for my local chapter of the Endo Association.
When I first started reading the notes on the GD support group I became
very scared and panicked. “Look at all of the awful things that are
going to happen to me” I thought. “Look at how terrible the treatments
are and how much people are suffering.” But then I decided to put it in
perspective, based on my endometriosis support group experience. You
have to remember that a support group is not an unbiased sample of
people suferring from the illness. Usually they have a larger
percentage of the people who are having the most trouble because guess
what…they are the ones that need support the most!
This is not to knock support groups in any way. It is just to keep
things in perspective and not assume that what happens to the majority
of the people in the group will happen to you.
For example, today I talked to a lady that is a total stranger.
Someone I know said they knew someone who had had the RAI and I asked
if she would be willing to talk to me.
This lady found out that she had GD as a result of a routine blood test,
same as me. She didn’t really know that she was having any trouble in
particular (as in no excessive suffering), but now realizes that some
moodiness and rapid heart effects were due to the thyroid levels. She
had the RAI. No muss, no fuss. She did not miss a day of work (and she
works in a ob-gyn office with a bunch of pregnant women coming in and
out all day long!); they just let her work in a back room where she
would not be directly exposed to the patients. They waited until her
thyroid level was zero before giving her the supplements. Even when her
level was zero, she basically felt fine: no excessive fatigue or
anything. Now she is adjusted to the proper levels with the supplements
and all is well.
I am not advocating RAI. As a matter of fact, I am a big believer in
knowing what ALL of the options are and patients making informed
decisions. One unfortunate part of this lady’s story was that she
was treated by an internist that specializes in cardiology, and didn’t
know about any other options.
My main point is to be careful not to over panic based on other peoples experiences.
This of course is something that I am prone to do.
Remember that knowledge is Power!
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