Re: L. O'Hearn

[Guest guest]

I respect your choice. I do believe everyone has the right make

his/her own choice on which method is best for the treatment.

I do believe in science and data from larger scale of clinical

study. But I do not believe in exageration, distortion, misleading

information. There are risks invovled in every treatment for Graves

as you can see from most of the clinical studies in past 20-30

years. ATD can cause serious side effect even death in 0.2-0.8% per

the patients. RAI can lead majority of the patients to hypo, or

worsen eye disease in some of the case (still a contraversy)and some

other side effect afterwards(some of them are still in dispute).

Surgery can cause some of the side effects as seen in RAI but less

severe eye problem. However, surgery will cause some serious damage

in 2-3% patients. So after all, they are all not all that safe.

I am pro-conservative treatment for any of the non-life threatening

disease. Radical treatment should come next if other motheds have

been explored and exhausted. I understand some of the docs are not

treating right. But exageration of RAI's side effects seems way too

much from some of the comments I saw in the past. So I decided to to

some search to give a bit more true info of the vies from current

medical field to the people here.

Do not take me wrong. If you can, keep your thyroid, that is the

best way. If you can not win the battle with Graves on ATD, there

are other choices, which might not be as bad as most of people

think, just be open-minded. Science will eventually tell us what is

the best way, it might not be any of the treatments we are using.

Best wishes.

Liang

> 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.