Need a little advise

[Guest guest]

In a message dated 11/1/2003 2:47:07 PM Eastern Standard Time,

luvmychowbear@... writes:

> that

> they have no idea what it is like to look through my eyes.

>

Hi .....I know, and it stinks! I have not had any surgeries yet. My

sight has never been in danger, so I am waiting until my eye disease is no

longer active.

So I don't really have any words of wisdom for you. Just wanted to wish you

well in your upcoming surgery.

God bless,

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HREF= " http://hometown.aol.com/lisareynolds64/myhomepage/personal.html " >http://ho\

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[Guest guest]

Hi all,

My name is and I have had TED since May of 2001. I am one of

the few that has nothing wrong with my thyroid. All levels are good

and I have been and continue being monitored every 4 months. The

Graves decided to attack my eyes only. I guess that is a good thing.

Sometimes when I start feeling sorry for myself, I step back and

thank the Lord I don't have to deal with the complications of hyper

or hypo thyroid. Even so, I have dealt with many obstacles, jumped

many hurdles and so far I haven't fallen flat on my face. Until last

November the double vision would " come together " for most of the day,

then the eyelid swelling got worse. Drs put me on prednisone(of

course)80 mgs a day for 2 months. Swelling went down a little,

double vision stayed I gained about 30lbs and turned into a raving

lunitic(or so my daughter says). The false vision was so far away

from the real vision that driving and doing my job wasn't impossible.

Don't get me wrong, I had to adjust to everything, (including looking

in the mirror). I have had to tell my bosses once or twice, that

they have no idea what it is like to look through my eyes.

Any way...... I have found 2 really great ophthalmologists in

Louisville and I saw both in April of this year. One specalizes in

Graves and reconstructive surgery and the other is an eye muscle

specialist. I had eye muscle surgery in May on both eyes and

needless to say it didn't work. There was an overcorrection and the

double vision actually flip flopped. I was supose to have another

surgery to " fine tune " last month. Found out my optic nerve is now

swelling and the graves specialist has decided my eyes are protruding

too much and now it is time for decompression. He is supose to

explain, in detail, what he is going to do in the surgery(which is

scheduled for Dec 6), at my next appointment 11/6/03. He did tell me

the technique for the decompression is to cut at the hairline and

peel the face down. WOW my heart skipped a beat. This is where I am

at now. Any advise or input would be greatly appreciated. I hope I

have made sense in my ramblings, this is the first time I have ever

put any of this on " paper " Thanks for the opportuniy to do so.

[Guest guest]

Hi ,

I'm sorry to hear that you are having such eye problems. That really

stinks. I don't have much advice, but you may want to order Elaine 's

new book on TED (or GO, as she prefers to call it). I hear it is great.

Also, you can post on Mediboard.com, and you may get some more responses,

as things may be slow in this group over the weekend. Being more specific

in your subject line may help as well (both here and at mediboard), so

those who know about your issue can spot it easier.

Even if you don't have hyper or hypO symptoms, it is best to follow similar

precautions to reduce your eye symptoms. I would guess that you still have

antibodies, but they probably balance each other out (i.e., blocking and

stimulating antibodies) -- I would want to be tested to know what they are,

and so I could track the disease (see if certain lifestyle changes make a

difference). There are known triggers for this disease, and best to avoid

them. For instance, one would do best to avoid iodine (kelp, seafood,

iodized salt, dairy), stress, cigarette smoke, immune system stimulants

(echinacea, goldenseal, ginko, vaccines, zinc), caffeine, alcohol,

aspartame, artificial flavorings (i.e., msg), and red dye #3. Whole foods

are best. Many people find that flaxseed oil helps their eyes a lot, in

addition to lubricating eyes with artificial tears and gels.

I hope some of this helps.

At 02:45 PM 11/1/2003, you wrote:

>Hi all,

>My name is and I have had TED since May of 2001. I am one of

>the few that has nothing wrong with my thyroid. All levels are good

>and I have been and continue being monitored every 4 months. The

>Graves decided to attack my eyes only.

[Guest guest]

Hi,

You appear to have what's called euthyroid Graves' disease. This happens when

you produce high levels of Both stimulating and blocking TSH receptor

antibodies. The stimulating ones cause hyperthyroidism and the blocking ones

cause

hypoT....but when you have both the effects balance each other out and your

thryoid hormone levels are normal.

About 60% of people with euthyroid GD end up developing a thyroid condition

within the 6 years following the time the eye disease occurs.

Until your immune system heals and you stop producing those antibodies, the

effects of surgery will be changed by the effects of the thyroid eye disease.

When you have these antibodies you have what's called active eye disease.

Surgery is only recommended during this phase if the optic nerve is threatened

or

symptoms are very progressive. Otherwise, too many surgeries must be done.

Before the autoimmune nature of this disorder was well known, doctors would

perform surgery too early and consequently end up having as many as 20 surgeries

over the course of several years.

When you have active GO, steroids and orbital radiation are used. these

therapies work in about 1/2 of all patients. avoiding sugar and saturated fats

and

iodine also help because they help the immune system heal, and reduce thyroid

antibody production. Stress reduction is also important and so are antioxidant

vitamins and flaxseed oil.

My eye book just came out a few weeks ago. I have an article on

www.suite101.com describing it that has info on where to get it. It's so new I

haven't even

received my author's copies yet, but it discusses therapy, including the

different types of orbital decompression in detail. There's also lots of info in

my eye article son www.suite101.com. Best to you, Elaine