a very useful link to another support group

[Guest guest]

http://groups.msn.com/GRAVESDISEASEANDRAI

it is another support under MSN. they tell all kind of stories about

their disease and treatment. A lot of them there are very open

minded. it could be helpful to listen to other story.

Terry mentioned to me about sharing experience. So now you can go

them to listen to their stories. hope it helps.

Liang

[Guest guest]

You have got to be kidding.....

[Guest guest]

Hi Liang,

I can't speak for the rest of the group but I'm only anti-RAI in a few

ways. I'm anti-RAI for myself. The treatment is one I am not interested

in personally as I personally don't see that it addresses what is wrong

with me. My immune system is attacking my otherwise healthy thyroid

gland. Killing my thyroid gland will not fix the problem of my immune

disorder. If a cure is ever found for this immune disorder I will still

have a thyroid gland that will be functional. I'm also not a fan of

radiation. I get as few x-rays in my life as possible as I am not

comfortable with radiation exposure.

Another way I'm also anti-RAI when I can plainly see that a patient is

being rushed into a decision. Too many newly diagnosed patients are

being told that RAI is the best treatment. Being confused, sick and

scared they listen to their doctors and have the procedure. Then they

discover after that there were other options open to them.

Lastly, I'm anti-RAI when a doctor has been mismanaging their patient's

treatment with ATDs. Many doctors will send their patients on a

hyper-hypo rollercoaster with ATDs. They'll prescribe a high dose of

ATDS and send the patient hypo, then they reduce or stop the ATDs and

send the patient hyper. There will be too few labs taken, too few visits

to the doctor and when labs are run the doctor tends to rely on the TSH

number instead of the actual thyroid hormone levels. This cycle repeats

itself many times and then the doctor will tell the patient that they

are not responding well to ATDs and tell them RAI is their best course

of treatment. The patient, who at this point has been through too many

ups and downs with this disease consents to the treatment.

I am all for RAI when a patient who has been properly monitored on ATDs

does not respond well to the medications. I'm for RAI when someone shows

a real adverse reaction to both PTU and Tapazole. Some people show a

mild, and often temporary reaction, of hives to one ATD or the other.

I've known a couple of people who were told that due to this reaction

they couldn't take ANY ATDs and that there was no other choice but RAI.

I'm not for RAI in that instance, but when someone shows a real reaction

to both ATDs then RAI is an excellent course of action.

I am open minded to RAI for treatment of Graves when proper ATD usage

has no effect and the patient is not comfortable with surgery. My own

brother-in-law has Graves disease and I have watched him be mismanaged

by his doctor. Funny thing is his doctor is supposed to be one of the

best in the area. My brother-in-law has only now started to do some

research and take charge of his care. He had been over-medicated on ATDs

and made hypo and when he went hypo the doctor told him to stop his ATDs

all together. Within a few weeks he was hyper again and was put on a

large dose of ATDs. They've been doing this to him for a while. When he

went hypo last time he asked the doctor if he should slowly reduce his

ATDs and see what happens in a few weeks. His doctor said that wasn't

what he should do, he should stop the ATDs immediately and then come

back for lab work in 8 weeks. The doctor did tell him he wouldn't keep

having this problem if he'd just agree and for RAI treatment.

in MA USA

Graves since March 1997

Currently on 0 PTU tablets per day

Was euthyroid from 2000-2002

Will not undergo RAI

a very useful link to another support group

http://groups.msn.com/GRAVESDISEASEANDRAI

it is another support under MSN. they tell all kind of stories about

their disease and treatment. A lot of them there are very open

minded. it could be helpful to listen to other story.

Terry mentioned to me about sharing experience. So now you can go

them to listen to their stories. hope it helps.

[Guest guest]

My sentiments exactly. I am hoping that the implication is not that our

support group is unuseful. I find Graves_Support to be a life saver. Thank

G-d we have a place to go that is sound and sane, and not tainted by the

non-medical and unprofessional factors that drive our current health care

system.

At 10:53 AM 10/23/2003, you wrote:

>You have got to be kidding.....

[Guest guest]

Hi, in MA,

Thanks for saying this so well! I, too, am personally skeptical of RAI for

reasons similar to yours, but it is the combination of problems that you

describe - the incompetence of so many (most??) of our endos in treating

with ATD's, and the excessively rosy presentation they do on RAI, AND their

frequent insistence on treating lab reports rather than patients that makes

me sound off and encourage folks here to put on the brakes and do their

homework. So many of these doctors just recommend RAI right up front, and

this is flat out contrary to normal, proper medical practice to jump

directly to the most aggressive treatments first. Some don't even go through

the motions of botching the job with ATD's first. :-/

-Jill

NJ, USA