Re: Graves Ophthalmopathy without thyroid problems?

[Guest guest]

Welcome ,

I am about all typed out here. :-)

But here is a great site.

You will find several good articles on the eye disease.

Plus, I am sure you will want to be learning more about thyroid, as you will

want to be watching it now.

http://www.suite101.com/welcome.cfm/graves_disease

I keep reading the eye disease happens to hyper and hypo, AND people with

normal thyroids, I just had not met one of you till now.

When my eyes were bad, best things were : refresh Plus eye drop, Refresh eye

ointment at night, then when my eyes got worse, taping them shut at night,

cool wet towels, raising the head of the bed by one brick, sunglasses ALL

the time outside, no eye make up,and no other make up if it gets in the eyes

during the day,.

You may want to read the article on antibodies. I wonder if yours will show

?

-Pam-

[Guest guest]

Hi ,

You are the first I have met with TED and no Graves. I had graves 1st then

eye disease. I agree with what everyone else has written to you, but have a

couple more suggestions.

You will want to find a good endocrinologist (a thyroidologist if you can

find one which is an endo that specializes in thyroid) and get checked over.

You will want to have your antibodies checked. Even though you may be

euthyroid, you may still have the antibodies that attack the eyes.

Are you seeing an ophthalmologist as well as the ocular plastic surgeon? I

am monitored by both and suggest you see an ophth as well.

Go to the site that was given to you by sumi and read all you can of Elaine's

info. Also, search the web under Thyroid Eye Disease or Graves Orbitopothy.

How long have you been having these eye problems? TED has a " hot phase " of

about 18 months where it usually runs its course and doesn't get any worse.

You will want to be sure that your hot phase is over before having surgery.

What can happen if your hot phase isn't over, you can have surgery, the TED

can get worse and then you will have to have the surgery over.

One important factor, treatment options are none for mild cases (other than

the things Pam wrote for you to do), steroids, radiation to eyes and in

extreme cases of protrusion where there is involvement with the optic nerve,

decompression surgery. I have been told by 2 neuro ophths (one being the Dr.

that I go to) that the radiation does absolutuely nothing to help this

disease, so I wouldn't even consider it.

I hope that your case stays mild! If you have any questions, email me any

time!

God Bless,

[Guest guest]

Hi ,

When you have the eye disease, Graves' ophthalmopathy, with normal thyroid

function tests, it's called euthyroid Graves' disease. The same thyroid

antibodies that cause Graves' hyperthyroidism cause the eye disorder so

you'll want to be tested for these antibodies to confirm your diagnosis.

Your doctor should order tests for both stimulating and blocking TSH receptor

antibodies. Or he may order thyroid binding inhibiting immunoglobulins (TBII)

which includes both of these test. The stimulating TSH receptor antibodies

are also known as thryoid stimulating immunoglobulins, and antibodies and

immunoglobulins are the same thing so the terminology does get very

confusing. Take care, elaine

[Guest guest]

Hi and ,

>>>How long have you been having these eye problems? TED has a " hot phase "

>>>of about 18 months where it usually runs its course and doesn't get any

>>>worse. You will want to be sure that your hot phase is over before having

>>>surgery. What can happen if your hot phase isn't over, you can have

>>>surgery, the TED can get worse and then you will have to have the surgery

>>>over.<<<

I have heard from people whose eye disease remained in the *hot* phase for 5

years. My eye doctor also says there is a form of the disease that comes

and goes <he calls it chronic> which is what I had for a number of years

following RAI. Last April it went into a hot phase <which my doc calls

acute> and have been dealing with it every since.

, getting your TSI ab's checked is very important. My doc tested for

the TSI antibodies and antibodies for Myasthenia Gravis to see which disease

was causing my eye disease. It was the TSI which are also significant in

autoimmune thyroid disease. I also recently read a medical article that

people who get our eye disease will *usually* have an autoimmune thyroid

disease within 2 years. So best to keep on top of it.

>>>One important factor, treatment options are none for mild cases (other

>>>than the things Pam wrote for you to do), steroids, radiation to eyes and

>>>in extreme cases of protrusion where there is involvement with the optic

>>>nerve, decompression surgery. I have been told by 2 neuro ophths (one

>>>being the Dr. that I go to) that the radiation does absolutuely nothing

>>>to help this disease, so I wouldn't even consider it.<<<

Eye radiation can cause eye muscle atrophy, which you don't want, as this

plays a role in double vision and can make things painful. It also will

cause cataracts. Told my eye doctor eye radiation is NOT a therapy that is

open for discussion as far as I am concerned.

Things to keep in mind should you need to make some decisions.

Jody

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[Guest guest]

Jody,

Can you tell me more about this? What are TSI ab's? What is

Myastenia Gravis? Also, what is Hashimoto's? Are symptoms

similar? If so, how do you know what you have? What would

have tipped my doctor off, just by looking, that I have Graves?

Thanks in advance,

>

> , getting your TSI ab's checked is very important. My doc

tested for

> the TSI antibodies and antibodies for Myasthenia Gravis to see

which disease

> was causing my eye disease. It was the TSI which are also

significant in

> autoimmune thyroid disease. I also recently read a medical

article that

> people who get our eye disease will *usually* have an

autoimmune thyroid

> disease within 2 years. So best to keep on top of it.

>

_

[Guest guest]

and others,

Here is a link for an explanation on the different antibody tests needed.

http://www.suite101.com/article.cfm/graves_disease/54459

But wait !

Look what else I found .

http://www.suite101.com/article.cfm/graves_disease/63856

Seems this was written just for you !

Depending on which antibodies predominate, it will show which way you

'might' go.

-Pam-

[Guest guest]

More:

Here is a place for basics, and also click on Eye Disease, and you will find

lots of links.

http://thyroid.about.com/mbody.htm

-Pam-

[Guest guest]

Hi ,

>>>Can you tell me more about this? What are TSI ab's? What is Myasthenia

>>>Gravis? Also, what is Hashimoto's? Are symptoms similar? If so, how do

>>>you know what you have? What would have tipped my doctor off, just by

>>>looking, that I have Graves?<<<

The TSI ab's are Thyroid Stimulating Immunoglobulin, these antibodies are a

factor in thyroid autoimmune disease, they attack both the thyroid and the

eye.

The Myasthenia Gravis is another autoimmune disease. You can read a very

little bit about it at http://www.aarda.org/

I know very little about it, and felt no need to learn more when the doctor

told me it was GD...which I knew it had to be since I was dx in '96 with

graves, but I was a bit panicked that he had ordered this test.

Hashimoto's is another autoimmune thyroid disease on the Hypo end of the

spectrum. Many in this group have both graves and hashi's. There has been

some discussion, I *think* in this group but could be another one, that

Hashi's and Graves are the same disease, with graves being the hyper side of

hashi's, which actually makes sense to me.

As for tipping your doctor off, he probably has some experience with seeing

the eye disease and suspected it. When doctors do suspect it, I feel it is

a crime when they do not run labs for the antibodies that are common for us.

It is something I recommend to all newly diagnosed people with graves.

Below are 2 articles on the antibodies that should explain things so much

better for you. I hope this and the articles will answer some questions for

you, much better than I can.

Take care,

Jody

http://www.labodia.com//en/thyroid/review_thyroid_english.htm

http://www.suite101.com/article.cfm/graves_disease/54459

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