Euthyroid Ophthalomapthy

MJHBrown

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May 20, 2001, 4:32:08 PM5/20/01

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Greetings all, I know I probably horribly mangled the words in the subject line
and I apologize. I just found this group and was hoping that anyone with
insight into this thyroid condition that is reversing all the eye surgery I
have had would share with me.

My eye surgeon says there is nothing that can be done about this condition, its
affected the eye muscle surgery that I have had and my vision is worse than
before any surgery whatsoever.

What can I do? He says I'm in a 'downward spiral' and until my situation
'stabilizes', there's naught to be done.

Sorry for rambling....thanks for listening and thanks in advance for any
advice.

MJ

Maxx Cairn

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May 21, 2001, 8:14:49 PM5/21/01

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MJ
You'll probably get some good responses from this group (which I can't give
because I haven't had the eye problems you describe) but you might want to
check out the about.com-thyroid site they will have information, forums and
book recommendations.
Best of luck
Lisa
"MJHBrown" <mjhb...@aol.com> wrote in message
news:20010520163208...@ng-co1.aol.com...

Mag Tait

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May 23, 2001, 1:31:51 AM5/23/01

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Greetings, MJ
I will be brief for now, but when my TED bagan I was euthyroid, although my thyroid
did join the party later. I think, from your letter, that your thyroid levels are
normal?
Have you been given prednisone to stop the inflammation. What about nonsteroidals
such as ibruprofen, not an established treatment, but I did have some success with
them as did a newsgroup poster named Paula. Steroids can be nasty, but worth it
and some simple precautions can help stop the side effects. I tried orbital
radiation and personally did not find it helpful, and recent studies are questionin
its effectiveness, but some have found it helpful. Also, there is a good paper
Paula found that explains using other immunosuppressents to stop the progression.
One lady actually educated her doctor with this paper, and I will dig up the link
for you later. Do you do all the things that they recommend to keep the swelling
down, such as sleep with your head elevated, use cold packe, etc?
If you have any specific questions, I would be glad to try and help out.
Good luck, the support here is a lifesaver.
mag

Cavalier

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May 25, 2001, 3:05:31 PM5/25/01

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Hi MJH

MJHBrown wrote:
> My eye surgeon says there is nothing that can be done about this condition, its
> affected the eye muscle surgery that I have had and my vision is worse than
> before any surgery whatsoever.

So sorry to read about your eye problems. I have
the same problem.
In addition to the others' comments...although you
have had surgery perhaps it is possible that this
was undertaken too early in your case.

> What can I do? He says I'm in a 'downward spiral' and until my situation
> 'stabilizes', there's naught to be done.

This is eventually going to stabilize - you don't
say how long you have TED, but when it settles
down there maybe some natural improvement,
therefore reducing the need for further
surgeries. Are you in a lot of pain?

> Sorry for rambling....thanks for listening and thanks in advance for any
> advice.

I hope that you feel better soon. Don't forget
the ice packs, the warmer weather usually is more
upsetting for the eyes, and get some good
sunglasses and a hat to shield your eyes.
Kindest regards,
Diana