Re: TED

[Guest guest]

Hi Pam, me again, its wierd that you mention the seeing things that

aren't there... That happens to me all the time!!!! I get so

frightened that I have gotten to the point I really do not like being

alone.... It scares me to death...

brandi

> When mentioned losing side vision, I remembered something

else. Yes, my side

> vision is still not what it was pre TED. This is that lack of

swivel I mentioned.

> But the reason for this post...at my worst eye wise, the lack of

swivel was much worse.

> And at about that time, I kept being startled by something or

someone far off to the

> sides. I would jump and turn, only to see nothing was there, with

accompanying panic. Then

> finally I read somewhere that this strange phenomena is part of

this eye disease. Once I

> knew that, even though I still saw it, and turned, I got used to

it, and was able to stop

> giving myself a heart attack. So if this should happen to any of

you, I hope I may have

> saved you some fright.

> Thank goodness this has gone away for me. I had forgotten.

> -Pam-

[Guest guest]

Hi Pam and all,

That seeing things out of the side is so freaky! Even when I am alone at

night and it happens I jump too. The eye exercises have helped eliminate

that ... I can not stress enough how important it is for us to exercise our

eyeballs and to do it several times a day. Mine are working in unison again

because of this.

Jody

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[Guest guest]

Hi Pam and all,

That seeing things out of the side is so freaky! Even when I am alone at

night and it happens I jump too. The eye exercises have helped eliminate

that ... I can not stress enough how important it is for us to exercise our

eyeballs and to do it several times a day. Mine are working in unison again

because of this.

Jody

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp

[Guest guest]

Welcome Lou,

I just thought I would say hi. You will find many of us with TEd here.

I am on ATDs, and after a very long time, my eyes are going back into my head.

But I

certainly can sympathize with what you are going through. Thank goodness they

are waiting

to do the surgery. I have one friend that did not wait, and he now has several

surgeries a

year, with little improvement.

Wait till you meet Jody , who is a member here. She is trying something new,

and we are

all watching her, to see how it goes. JJJOODDYYYY....where are you? :-)

-Pam-

[Guest guest]

,

It's hard to say for sure, as I was not diagnosed as soon as I should have

been.

The eyes were bugged out just enough to give be the look of a person on drugs

and

looking for more, long before I was diagnosed. And being shaky didn't help

matters any.

So I got no help at the doctors for along time.

My friends asked about it. My family said I was just getting to look like my

sister.

They figured it was genetic. Hah,,,DUH !!!

Once diagnosed, during the thyroid storm, I was informed about TED. Told it

was obvious.

<sigh>

I have been on PTU over three years now. The first year I was going up and down

severely.

My eyes just kept getting worse during that time.

Eventually I had one good year , and THEN my eyes started to go back in. So I

think you

need one really good year before anything STARTS to improve. I mean a really

good year.

Not just within the supposed 'normal' range.

Once they started to go back in, I found I had to keep my thyroid VERY stable,

and make

any changes very slowly, of the process starts to reverse. So that is why, even

though I

am a bit hypo for my liking, I am taking this weaning off of the PTU much slower

that the

doctor would let me.

I'm only reducing by 1/4 pill at a time. I would rather be a bit hypo,, than

have my eyes

get worse.

I have tried to change quicker, but the double vision starts up, and the

measurement of my

eyes shows it.

My endo measures how far they stick out with a little glass measuring thing.

And this

confirms what I already know.

I now see one of everything. At the worse, there were not only two , but

three and four

of everything, unless I worked real hard. And I can now drive at night !

Amazing..

.. My eyes are still improving slowly. I hope they will swivel better in the

future. It

still could be a bit better. I know that the back corners of my van are the

danger points.

This could be partly the lack of perfect movement, or partly there is still a

bit of depth

perception being perfect.

This is because they did not work together. One eye would go off on it own.

Kind of

wander around. I think it was just slower to do what I wanted it too.

Not sure what I left out here. Three years sounds about right to me. But you

need that

one year minimum of REALLY GOOD thyroid levels to see a beginning of change.

Then time for

it to happen. They don't just go back in real quick. At least this is my

experience. I

have been lucky in all of this, and I personally give the PTU the credit. My

fear is that

if I had gone for the radiation or the surgery that was being pushed on me, is

that I

might not have ever had the chance for this to happen.

Stuff I did besides thyroid :

NO eye make up !!!

Sunglasses BEFORE going outside, and inside if needed.

Avoid any stuff in the air that hurts eyes

Refresh eye drops

Refresh eye ointment at night, and tape eye shut.....had to do the worst one,

as I

needed to see to get to the potty. :-)

Got a blue blocker thingie that hooks on my visor in the van. This was needed

in

addition to the sunglasses on occasion

I just protected them from anything that hurt.

Tried the oral Predsisone.....worked only while I took it.

The Prednisone eye drops did help while my eyes were at their worst.

-Pam- still wondering what I left out. :-)

Opps, I see...your eye doctor may not have read that the average time is one

year AFTER

your thyroid levels are stable.....which is impossible if you were only

diagnosed one year

ago !

Weber wrote:

> Pam,

>

> What is a very long time to you, that your

> eyes are receding from the bulging position?

>

> I've only been diagnosed with Graves a year

> ago and want to wait at least 3 years from then

> to be sure I am stable. My opthamologist (spelling?)

> says my eyes ARE stable but I am waiting

> none the less.

>

> --

>

> dx hyperT/Graves Feb 2001; (current treatment propylthiouracil PTU)

>

>

[Guest guest]

Thanks for all the details Pam.

- I do not wear eyemakeup.

- And the sunglasses --- I have about 12 pairs placed everywhere

so no matter whether I am in the house or out, I can put them

on at the first sight of sunlight.

- I use TheraTears. They are preservative free and I tired

about 12 or so brands of drops before I found one that

works. My eyes are much more moist since using them.

I'm down from putting drops in about every 2 or 3 hours

to just 2 or 3 times a day and feeling comfortable.

- I use Lacri Lube ointment at night. I also tried about

4 different ointments for night wear and like these the best.

A second opinion opthamologist recommended these for

me.

One of the most disturbing things to me with my eyes

being out at 23mm is that they SEEM to be prone to

more things hitting them. Then I get worried and have to

make a special trip to the eye doctor. I use my optometrist

for these situations at times since he has Saturday hours.

Your email makes things more hopeful. One of the reasons

I LOVE this list!!

Thanks again.

--

dx hyperT/Graves Feb 2001; (current treatment propylthiouracil PTU)

[Guest guest]

Thanks for all the details Pam.

- I do not wear eyemakeup.

- And the sunglasses --- I have about 12 pairs placed everywhere

so no matter whether I am in the house or out, I can put them

on at the first sight of sunlight.

- I use TheraTears. They are preservative free and I tired

about 12 or so brands of drops before I found one that

works. My eyes are much more moist since using them.

I'm down from putting drops in about every 2 or 3 hours

to just 2 or 3 times a day and feeling comfortable.

- I use Lacri Lube ointment at night. I also tried about

4 different ointments for night wear and like these the best.

A second opinion opthamologist recommended these for

me.

One of the most disturbing things to me with my eyes

being out at 23mm is that they SEEM to be prone to

more things hitting them. Then I get worried and have to

make a special trip to the eye doctor. I use my optometrist

for these situations at times since he has Saturday hours.

Your email makes things more hopeful. One of the reasons

I LOVE this list!!

Thanks again.

--

dx hyperT/Graves Feb 2001; (current treatment propylthiouracil PTU)

[Guest guest]

Thanks for all the details Pam.

- I do not wear eyemakeup.

- And the sunglasses --- I have about 12 pairs placed everywhere

so no matter whether I am in the house or out, I can put them

on at the first sight of sunlight.

- I use TheraTears. They are preservative free and I tired

about 12 or so brands of drops before I found one that

works. My eyes are much more moist since using them.

I'm down from putting drops in about every 2 or 3 hours

to just 2 or 3 times a day and feeling comfortable.

- I use Lacri Lube ointment at night. I also tried about

4 different ointments for night wear and like these the best.

A second opinion opthamologist recommended these for

me.

One of the most disturbing things to me with my eyes

being out at 23mm is that they SEEM to be prone to

more things hitting them. Then I get worried and have to

make a special trip to the eye doctor. I use my optometrist

for these situations at times since he has Saturday hours.

Your email makes things more hopeful. One of the reasons

I LOVE this list!!

Thanks again.

--

dx hyperT/Graves Feb 2001; (current treatment propylthiouracil PTU)