TED or something like it...

[Guest guest]

Hi folks,

I saw the ophthalmologist who specializes in TED today, and he does think

that I have TED. He is sending me for an ultrasound to confirm. I asked him

about further antibody blood tests and he says that they're unreliable and

unnecessary. He wants simply to monitor me for possible optic nerve

involvement (so far things look good).

He told me to keep doing what I'm doing in terms of managing stress,

maintaining my T3 and T4 levels and the supplements that I take. He thinks

that the meditation and the Immunocal, EFAs and Vitamin C ascorbate are

reducing the inflammatory process so gave me 'two thumbs up' for that.

I'm concerned that ongoing management of the disease may be compromised if

we don't monitor the antibody levels. Can anyone comment on my concern,

please?

Appreciating you,

Sheila

" The greatest discovery of my generation is that human beings can alter

their lives by altering their attitudes of mind. "

[Guest guest]

Sheila,

I have had active TED about 3 years. My new awesome ophth " gets it " when it

comes to the role of the TSI in TED. He has my endo run a TSI every six

months. To monitor the activity of your eye disease, that is enough. I would

say

that for monitoring GD, you really only need it to see if you are in remission

before you wean off ATDs.

The thing with TED is, you should not have any tissue surgery while you still

have antibodies. This tells you that the disease is still active. Docs will

say that you can start having surgeries after 6 months of stability when the

hot phase is over, and Elaine and others say NO.

Tissue surgery during active TED could be negated by progression of the

disease, thus leaving scar tissue and the need to repeat surgeries. This is why

I

have not had any surgeries and my eyes are improving on their own. I may need

corrective surgeries after the disease burns out, which could take a few more

years. But if I can spare myself from having 12 surgeries instead of

3-6...then it is worth the wait to me.

The only surgery that should be considered during the hot phase or active

phase is orbital decompression, and only if your vision is in danger. If your

eye pressures are high or your optic nerves are being damaged or you have

serious corneal issues, then you have no choice but to have the surgery to

prevent

blindness. But when you have decompression, there is a 50% chance that you

will be left with double vision afterwards. (My ophth says more like 70% in his

experience.) So if this happens, you will not be able to have muscle surgery

to repair the double vision and you may have to suffer with that for a while

until the disease is no longer active.

Wow, have I said too much? Sorry this is happening to you. Get a copy of

Elaine's book when you can.

God bless,

<A

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

metown.aol.com/lisareynolds64/myhomepage/personal.html</A>

[Guest guest]

In a message dated 10/21/2003 9:48:27 AM Eastern Daylight Time,

seisele@... writes:

> I also wasn't thrilled with the ophth's reference to bringing on RAI if the

> the optic nerve starts to show wear

Sheila,

Was he speaking of RAI for treatment of hyperthyroidism, or radiotherapy

treatment for TED? Two different animals.

[Guest guest]

Hi Sheila,

With sophisticated imaging tests, such as MRI or ultrasound, most Graves'

patients will show some congestive changes, and this will enable your doctor to

tell if your condition warrants treatment.

Not many ophthalmologists are familiar with antibody tests unless they

specialize in the treatment of Graves' disease. And at one time thyroid antibody

tests were unreliable and doctors didn't know that both blocking and stimulating

TSH receptor antibodies contribute to GO.

I'd be content with the ultrasound to help diagnose TED. Later you can ask

your endo to order tests for TSH receptor antibodies. You might even want to

wait until you think you're approaching remission to confirm this. Best to you,

Elaine

[Guest guest]

Thank-you .

I am hoping to get a copy of Elaine's book. This eye problem began at the

height of my search for a job and after a great deal of stress with the

failure of a business and a marriage in serious trouble. (Stress triggered

the eye, I suspect.)

Anyway, it means that I now must find an income also, so no purchases in the

meantime other than basic essentials (which Elaine's book probably qualifies

as--smile!)

I also wasn't thrilled with the ophth's reference to bringing on RAI if the

the optic nerve starts to show wear and unfortunately, the medical system in

this area has deteriorated so badly, I'm at the top of the pile in terms of

options for physicians.

I'm hoping and praying that what I'm doing keeps working. I put another very

difficult autoimmune disease into remission earlier in my life [bechet's

Disease--a systemic vasculitis] through excellent stress management,

supplements and a strong faith.

So, w'll see...

Meanwhile, I am deeply appreciative of this community and your support,

Sheila

From: LISAREYNOLDS64@...

Sent: Monday, October 20, 2003 9:44 PM

To: graves_support

Subject: Re: TED or something like it...

Sheila,

I have had active TED about 3 years. My new awesome ophth " gets it " when it

comes to the role of the TSI in TED. He has my endo run a TSI every six

months. To monitor the activity of your eye disease, that is enough. I

would say

that for monitoring GD, you really only need it to see if you are in

remission

before you wean off ATDs.

The thing with TED is, you should not have any tissue surgery while you

still

have antibodies. This tells you that the disease is still active. Docs

will

say that you can start having surgeries after 6 months of stability when the

hot phase is over, and Elaine and others say NO.

Tissue surgery during active TED could be negated by progression of the

disease, thus leaving scar tissue and the need to repeat surgeries. This is

why I

have not had any surgeries and my eyes are improving on their own. I may

need

corrective surgeries after the disease burns out, which could take a few

more

years. But if I can spare myself from having 12 surgeries instead of

3-6...then it is worth the wait to me.

The only surgery that should be considered during the hot phase or active

phase is orbital decompression, and only if your vision is in danger. If

your

eye pressures are high or your optic nerves are being damaged or you have

serious corneal issues, then you have no choice but to have the surgery to

prevent

blindness. But when you have decompression, there is a 50% chance that you

will be left with double vision afterwards. (My ophth says more like 70% in

his

experience.) So if this happens, you will not be able to have muscle

surgery

to repair the double vision and you may have to suffer with that for a while

until the disease is no longer active.

Wow, have I said too much? Sorry this is happening to you. Get a copy of

Elaine's book when you can.

God bless,

<A

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

//hometown.aol.com/lisareynolds64/myhomepage/personal.html</A>

[Guest guest]

He just said radiation for TED and since I'm not hyper but hypo, I suspect

it must be the latter. Can you say more?

Re: TED or something like it...

In a message dated 10/21/2003 9:48:27 AM Eastern Daylight Time,

seisele@... writes:

> I also wasn't thrilled with the ophth's reference to bringing on RAI if

the

> the optic nerve starts to show wear

Sheila,

Was he speaking of RAI for treatment of hyperthyroidism, or radiotherapy

treatment for TED? Two different animals.

[Guest guest]

Thanks Elaine. This was very helpful. He does specialize in TED.

Appreciating you,

Sheila

Re: TED or something like it...

Hi Sheila,

With sophisticated imaging tests, such as MRI or ultrasound, most Graves'

patients will show some congestive changes, and this will enable your doctor

to

tell if your condition warrants treatment.

Not many ophthalmologists are familiar with antibody tests unless they

specialize in the treatment of Graves' disease. And at one time thyroid

antibody

tests were unreliable and doctors didn't know that both blocking and

stimulating

TSH receptor antibodies contribute to GO.

I'd be content with the ultrasound to help diagnose TED. Later you can ask

your endo to order tests for TSH receptor antibodies. You might even want to

wait until you think you're approaching remission to confirm this. Best to

you,

Elaine