TED Elaine

[Guest guest]

>

> Did anyone have or heard about a biopsy of the eye to see if TED is still

active? The >eye surgeon is trying to get me into a study program so he can

get an ocular scan and >biopsy done on my eye. I am scare about this biopsy

since I don't know anything >about it. He wants these done before he starts

> treatment on my eyes. Its been a year since I saw him and my TED is still

in the lower >stage of the scale. He is calling for radiation but I don't

care for it.

Hi,

I've been trying to learn about TED for six months and this is the first

I've heard of a biopsy being needed. I have what the local TED expert called

" moderate " TED and he made no mention of any treatment being needed.

Best wishes,

[Guest guest]

Thanks Elaine. I thought it wasn't necessary. My surgeon is going to get me

the information for this study. Than I will decide if its right for me. But I

figure that those test isn't required to see if GO is active.

Marie

[Guest guest]

Hi,

If your eye disease is in the active phase, and it sounds like it is, surgery

isn't a good option. This is because your eye muscles continue to change

during the active phase and often resolve on their own. Having surgery

restricts the muscles, and when the natural changes occur, you end up needing

more surgery. At one time before the autoimmune nature of GO was known,

people were rushed into eye muscle surgery too quickly. Many of these people

have had more than 10 separate eye surgeries, and one person I know has had

more than 20 eye surgeries.

I'm not fond of any form of radiation, but the external beam radiotherapy for

GO offers benefits of the optic nerve is threatened. If the optic nerve isn't

threatened, most ophthalmologists advise holding off on treatment. Steroids,

like orbital radiotherapy, slow down the lymphocytes (white blood cells) in

eye muscle tissue, and this reduces congestion. Buf often, with steroids,

unless you stay on a low dose, the symptoms generally return when treatment

is stopped. Orbital radiotherapy causes effects up to 6 months after the

procedure (usually 10 treatments) is stopped.

Much has to do with how rapidly your eye disease is progressing and the state

of your optic nerve. You can also help reduce congestion and inflammation by

avoiding sugar, saturated fats, and iodine, in excess of 150 mcg daily. These

steps will help reduce congestion.

You can also use other immunosuppressants besides steroids, such as

methotrexate, cyclosporine and even ATDs, which offer a mild

immunosuppressive effect. The key here is to reduce thyroid antibody

production, which would bring the active phase into remission. Best, Elaine

[Guest guest]

In a message dated 5/21/2003 10:42:14 AM Central Daylight Time,

daisyelaine@... writes:

> You can also use other immunosuppressants besides steroids, such as

> methotrexate, cyclosporine and even ATDs, which offer a mild

> immunosuppressive effect. The key here is to reduce thyroid antibody

> production, which would bring the active phase into remission

Hi Elaine:

As always I appreciate your input. I don't do well on prednisone. Seems the

side effects for me are almost as bad as the TED itself. I'll discuss the

above drugs with my eye doc next month. To your knowledge, are the side effects

as bad and are the positive effects very helpful with TED?

Terri

Graves disease 1979; treated with RAI; exothalmia 1982, treated with IV

steroids; since then on one or another form of replacement hormone. New flare

up

of TED with severe double vision, swelling in intraocular muscles and

inflammation in August of 2002. Currently hypoactive. Treating TED with

prednisone.

If doesn't work, considering other options (surgical).

[Guest guest]

Hi,

Most of the other therapies also have side effects because they depress your

immune system overall. Like steroids, most, but not all people have positive

results. It all depends too on what your symptoms are. If they're primarily

congestive and causing your eyes to protrude, reducing the congestive process

should help. But if you have scar tissue or fatty deposits, you won't see the

results you want very quickly. And it depends on what phase of the eye disease

you're in. If you are in the active phase, any of the medical therapies,

including external beam radiation, have the ability to help. It could be too

that a

lower dose of steroids taken longer would work better than a higher dose.

If your eye disease has already resolved, these meds will not be effective.

This is when symptoms can resolve on their own.

You want to make sure too that your thyroid hormone levels are optimal for

you. If they're too low or too high, they can add to your TED symptoms. You want

to make sure that you're having both FT4 and FT3 levels since TSH can be

misleading. In particular, the TSH receptor antibodies that contribute to TED,

and

the steroids you were on, cause TSH to be falsely decreased. Best, Elaine

[Guest guest]

In a message dated 5/24/2003 1:24:27 PM Central Daylight Time,

daisyelaine@... writes:

> Most of the other therapies also have side effects because they depress

> your

> immune system overall. Like steroids, most, but not all people have positive

>

> results. It all depends too on what your symptoms are. If they're primarily

> congestive and causing your eyes to protrude, reducing the congestive

> process

> should help. But if you have scar tissue or fatty deposits, you won't see

> the

> results you want very quickly. And it depends on what phase of the eye

> disease

> you're in. If you are in the active phase, any of the medical therapies,

> including external beam radiation, have the ability to help. It could be too

> that a

> lower dose of steroids taken longer would work better than a higher dose.

> If your eye disease has already resolved, these meds will not be effective.

> This is when symptoms can resolve on their own.>>

I have now been weaned off the prednisone. While I was on the 60 mg &

80mg/day doses, the double vision did improve -- not go away, but improved. Now

that I am down to 10 mg every other day, it's back all the time again. No

better

than it was before the prednisone. And I don't tolerate prednisone well at

all. I am covered in bruises, I don't sleep, I gain weight, I'm crankier (than

usual!). The CT scan and MRI showed swelling in the occular muscles and

inflammation, so I assume that means I'm still in the active phase?? External

swelling is pronounced, but my eye doc said the " lid lag " isn't too bad and the

optic nerve is not being threatened. I go back to him on June 9th at which

point I will have been off steroids for 2 weeks and I assume, given what's

happening now, the double vision will be as significant as it is now (I drive

with

one eye shut!).

> <<You want to make sure too that your thyroid hormone levels are optimal

> for

> you. If they're too low or too high, they can add to your TED symptoms. You

> want

> to make sure that you're having both FT4 and FT3 levels since TSH can be

> misleading. In particular, the TSH receptor antibodies that contribute to

> TED, and

> the steroids you were on, cause TSH to be falsely decreased.>>

So what next? What tests should I ask for? Are other therapies besides

orbital radiation or surgery available?

As always, Elaine and everyone, thank you in advance for your advice.

BTW, I will ask for a TSI. I'm not sure I've ever had one. If the TSI is

high, what can be done about that? (I frankly assume it's high since the eye

tissues are still under attack.)

Terri

Graves disease 1979; treated with RAI; exothalmia 1982, treated with IV

steroids; since then on one or another form of replacement hormone. New flare

up

of TED with severe double vision, swelling in intraocular muscles and

inflammation in August of 2002. Currently hypoactive. Treating TED with

prednisone.

If doesn't work, considering other options (surgical).

[Guest guest]

Hi,

Jody, who also developed TED years after RAI, is now using anti-thyroid drugs

along with thyroid hormone to help suppress her remaining thyroid tissue and

reduce TSI production. She's seeing good results, although this is more of an

experimental therapy. She also finds that when her thyroid hormone levels get

too low, her symptoms worsen. But overall, she's seen good improvement.

Another friend uses aspirin to reduce inflammation with good results.

Steroids, like you described, usually cause transient benefits that cause

symptoms to return when they're withdrawn.

The TSI test would help in showing if your eye disease is active or not. If

it's active, than therapy can be effective. Instead of steroids, you could try

the external beam radiation. This directly affects the white blood cells that

are producing the congestion and antibodies.

If your eye disease is not active, though, you won't experience benefits.

Another option is prisms to correct double vision when looking forward.

Surgery would also help but not during the active phase.

I think if I had active eye disease I'd probably opt for the external beam

radiation since the effects persist for a good six months. See what your doctor

has to say about this or about using other immunosuppressants like

methotrexate. best, elaine

[Guest guest]

Hi Elaine,

> Instead of steroids, you could try the external beam

> radiation. This directly affects the white blood cells

> that are producing the congestion and antibodies.

Has the Mayo Clinic study that found that radiation did not have long term

benefit been refuted? I would think that radiating the eyes is just as bad an

idea as RAI is.

I really think some doctors are overly radiation and knife happy. Seems like

the slash and burn branch of medicine. I went to a neuro-ophthalmologist at

a fairly reputable teaching institute, and the doctor immediately wanted to do

10 radiation treatments and then surgery. Needless to say, I never went back

to him. Now, less then 2 years later my eyes are almost back to normal and I

don't think I could have ever again been this good if I had been treated.

Bertta

RAI 7/2000

[Guest guest]

In a message dated 5/28/2003 10:48:08 PM Central Daylight Time,

daisyelaine@... writes:

> I think if I had active eye disease I'd probably opt for the external beam

> radiation since the effects persist for a good six months. See what your

> doctor

> has to say about this or about using other immunosuppressants like

> methotrexate

Thanks Elaine. I see the eye doc on the third and will print out your email

to take to him since I seem to forget everything to ask when I do go in!!

Can anyone tell me more about external beam radiation? Someone had said at

some point that the radiation eye treatment was dangerous and the efficacy

doubtful. But I don't think it was " external beam radiation " they were talking

about? What does it involve?

I'm sorry for so many questions. I don't know where you get the patience and

the time Elaine!! But your input to everyone is always appreciated.

BTW, don't you have another book coming out dealing more with TED?

Terri

Graves disease 1979; treated with RAI; exothalmia 1982, treated with IV

steroids; since then on one or another form of replacement hormone. New flare

up

of TED with severe double vision, swelling in intraocular muscles and

inflammation in August of 2002. Currently hypoactive. Treating TED with

prednisone.

If doesn't work, considering other options (surgical).

[Guest guest]

Hi,

The Mayo study has been widely criticized.

I'm not a fan of radiation at all and had been relying on that study til I

started interviewing ophthalmologists for my GD book.

They explained how the study was flawed and I did research on this. One

doctor told me about a patient who did not respond to steroids, refused orbital

radiotherapy because of the study and is now blind. When the optic nerve is at

all threatened or the congestive process is progressive, the production of GAG

by white cells has to be stopped somehow.

I pointed out that the study showed that many of these people in the mayo

study ended up needing strabismus surgery down the road. this doctor showed me

files demonstrating that many people with severe GO end up having strabismus

surgery regardless of their treatment, and this was related to the orbital

muscle

changes that had already occurred, not to the congestion.

I wouldn't recommend radiation for someone with mild proptosis since this

often resolves during the resolution phase, but for severe GO, I'd try steroids

first and if they didn't work, I'd use external beam radiation. Best, Elaine

[Guest guest]

Hi Terri,

My eye book will be out in July.

When I first started writing it, I wasn't too keen on external beam

radiation, which is also called orbital radiotherapy. I'd accepted the Mayo

study as

flawless but later found out it wasn't.

The experts I interviewed don't use it for mild proptosis. They use it when

congestive is extensive and threatens the optic nerve and vision. And they use

it when the rate of progression shows that this is a possibiity.

One doctor said he likes to try people out on steroids first to see how their

immune system responds. He felt that if they didn't respond at all to

steroids they probably weren't good candidiates for external beam either,

because

they were likely no longer in the active disease phase.

He also mentioned the dramatic effects of stress reduction. He said he could

tell what was going on in his patient's lifes (stress-wise) from one

appointment to the next. And he couldn't say enough about avoiding sugar and

saturated

fats to reduce inflammation.

Best, Elaine

[Guest guest]

In a message dated 5/31/2003 11:14:54 AM Central Daylight Time,

daisyelaine@... writes:

> My eye book will be out in July.>

I look forward to that. Will it be announced here or available on Amazon?

> One doctor said he likes to try people out on steroids first to see how

> their

> immune system responds. He felt that if they didn't respond at all to

> steroids they probably weren't good candidiates for external beam either,

> because

> they were likely no longer in the active disease phase.>>

I assume I'm in the active phase since it keeps getting worse it seems. I

responded well to the steroids, from the eye point of view. But I also respond

badly to the side effects and need to avoid steroids. While I was on them, my

double vision decreased dramatically. Now that I have been weaned off (I had

my last pill last week), it's worse than it was before. I see the eye doc

again on Monday and will discuss options with him and the things I've learned

from you and the list.

What is external beam radiation like? How long does it take? Does it take

any recovery time? What side effects does it have? Has anyone here ever had

it?

> He also mentioned the dramatic effects of stress reduction. He said he

> could

> tell what was going on in his patient's lifes (stress-wise) from one

> appointment to the next. And he couldn't say enough about avoiding sugar and

> saturated fats to reduce inflammation. >>

I'm not too bad on the sugar front, but the stress? Had to avoid some of it.

And right now the stress from just trying to see to drive and work is worse

than most other stress.

Terri

Graves disease 1979; treated with RAI; exothalmia 1982, treated with IV

steroids; since then on one or another form of replacement hormone. New flare

up

of TED with severe double vision, swelling in intraocular muscles and

inflammation in August of 2002. Currently hypoactive. Treating TED with

prednisone.

If doesn't work, considering other options (surgical).

[Guest guest]

Hi Terri,

My TED book will be available on Amazon, and I'll announce it here. While

I'm sorry you developed GO, I'm glad you're sharing your story so that the

newbies will realize that GO frequently develops many years after RAI because of

the persistent immune system stimulation.

The problem with steroid therapy is that they symptoms generally return when

the steroids are withdrawn.

In external beam radiotherapy, you have a series of treatments where a

low-dose localized beam of radiation targets orbital tissue, destroying the

lymphocytes that are aggregated in the orbital tissue. The benefits persist for

about

6 months after the treatment is complete. Eye muscle restriction is frequently

improved as more room becomes available in the orbital cavity.

It may not be the solution you're looking for, but an experience

opthalmologist should be able to tell if you're a good candidate. Best to you,

Elaine

[Guest guest]

Hi Terri,

I had the radiation therapy last month It really brought down

alot of the swelling and pressure I still have the double vision but

all of my family say my eyes look soooo much better. I also had

tried the steroids on and off for almost a year the last time on I

became so emotionally distraught that I couldn't even make my self

get out of bed I decided then I couldn't take them anymore. I know

what you are saying about the stress of working and driving I had to

give up driving at night last Fall I patch my eye to drive now and

go slow Stress relief is a huge thing along with keeping levels

normal I joined a yoga class along with walking and occasionally

taking xanex when needed . This is a very hard disease my prayers

are with you Janice

> In a message dated 5/31/2003 11:14:54 AM Central Daylight Time,

> daisyelaine@a... writes:

>

> > My eye book will be out in July.>

>

> I look forward to that. Will it be announced here or available on

Amazon?

>

> > One doctor said he likes to try people out on steroids first to

see how

> > their

> > immune system responds. He felt that if they didn't respond at

all to

> > steroids they probably weren't good candidiates for external

beam either,

> > because

> > they were likely no longer in the active disease phase.>>

>

> I assume I'm in the active phase since it keeps getting worse it

seems. I

> responded well to the steroids, from the eye point of view. But I

also respond

> badly to the side effects and need to avoid steroids. While I was

on them, my

> double vision decreased dramatically. Now that I have been weaned

off (I had

> my last pill last week), it's worse than it was before. I see the

eye doc

> again on Monday and will discuss options with him and the things

I've learned

> from you and the list.

>

> What is external beam radiation like? How long does it take?

Does it take

> any recovery time? What side effects does it have? Has anyone

here ever had

> it?

>

> > He also mentioned the dramatic effects of stress reduction. He

said he

> > could

> > tell what was going on in his patient's lifes (stress-wise) from

one

> > appointment to the next. And he couldn't say enough about

avoiding sugar and

> > saturated fats to reduce inflammation. >>

>

> I'm not too bad on the sugar front, but the stress? Had to avoid

some of it.

> And right now the stress from just trying to see to drive and

work is worse

> than most other stress.

>

> Terri

> Graves disease 1979; treated with RAI; exothalmia 1982, treated

with IV

> steroids; since then on one or another form of replacement

hormone. New flare up

> of TED with severe double vision, swelling in intraocular muscles

and

> inflammation in August of 2002. Currently hypoactive. Treating

TED with prednisone.

> If doesn't work, considering other options (surgical).

>

>

>

[Guest guest]

In a message dated 6/10/2003 4:53:44 PM Central Daylight Time,

bzbee62@... writes:

> I had the radiation therapy last month It really brought down alot of the

> swelling and pressure I still have the double vision but all of my family say

> my eyes look soooo much better.>>

Thanks for the info Janice. How many treatments did you have to have? I

have been told that it takes up to 6 months for the full effect to be seen,

especially with regards to the double vision. Was it painful? Did you lose

hair?

Any problem with working while you were on the treatment?

<< I also had > tried the steroids on and off for almost a year the last time

> on I

> became so emotionally distraught that I couldn't even make my self get out

> of bed I decided then I couldn't take them anymore.>>

They worked for me but only while I was on them, at least at the 60 mg level

and that's too much to stay on long-term. And sleep? Forget it:-)

<<I know > what you are saying about the stress of working and driving I had

> to

> give up driving at night last Fall I patch my eye to drive now and go slow

> Stress relief is a huge thing along with keeping levels normal I joined a

> yoga class along with walking and occasionally taking xanex when needed . This

> is a very hard disease >>

> No kidding. I thought I was through with it 20+ years ago!!! I swim, that

> helps with the stress. And babysit a 3 year old which helps a lot too.

>

> Terrii

Graves disease 1979; treated with RAI; exothalmia 1982, treated with IV

steroids; since then on one or another form of replacement hormone. New flare

up

of TED with severe double vision, swelling in intraocular muscles and

inflammation in August of 2002. Currently hypoactive. Treated TED with

prednisone.

It worked while on prednisone, but TED came back worse after. Now considering

other options.