Re: Liang and RAI - enough already!

[Guest guest]

ARGGGG..

Liang, it is ONLY perfectly reasonable for someone to choose RAI IF they

have been properly informed of the risks and consequences. TOO MANY people

are rushed into RAI without ever being informed they even have options like

ATDs or surgery or the chance of remission - or rushed into it while a

person is hyper and confused and just too impatient to make a rational

decision. TOO MANY doctors say RAI CURES Graves disease. IT DOES NOT. It

cures hyperthyroidism, but you are still stuck with the autoimmune disease

TOO MANY doctors gloss right over the statistical evidence that RAI is going

to make 30% or more of patients OBESE. Or that it should not be performed at

all if there is any evidence of TED. Or that even if there is no evidence of

TED there is 15% chance of TED developing afterwards. WAY TOO MANY doctors

don't even tell people they need to avoid contact with other people and pets

for any amount of time after RAI. I've even heard it suggested they just go

spend the day at the movie theater watching movies - to avoid family and

work for a day - well WHAT ABOUT those people sitting next to them at the

movies - what if the person sitting next to them was newly pregnant??? And

TOO MANY doctors never tell the patient that after RAI, it MIGHT NOT BE AS

SIMPLE as taking one little pill every day for the rest of your life - you

MAY have conversion problems. Or the synthetics MIGHT NOT WORK for you and

the natural replacement hormone MIGHT trigger antibody production. Or the

fact that radiation causes cancer and mutation in cells - MOST doctors just

don't tell patients these things. And many of the people on this list and

others REGRET having RAI - they feel it was the worst decision they ever

made for themselves. Granted that may be a small percentage of the total

people receiving RAI, but how do you know on what side you are going to

fall??? You don't. There is no way to predict it. And I'll tell you what - I

sure am happy to have heard and learned from their stories - stories NO

DOCTOR would ever tell me. You go buy a car, don't you read consumer reports

and get online and read actual buyer reviews? You buy a book on amazon you

read the reviews. You benefit from the information people provide and health

is no different and certainly no less important.

Liang, I have to know, are you a med student or a doctor or something?

Because I'll tell you what if you are. Instead of shoving all these studies

at us (that many of us have already read on our own) why not listen to what

a real thyroid patient is saying and learn what our real issues are and use

that to your advantage - instead of trying to convert us to RAI-Lovers -

because that IS NOT GOING TO WORK. Stick around and find out how many of us

are mismanaged by our doctors and the problems we continue to have even

after RAI has " cured " us. Or the issues we have being properly managed on

ATDs. Or how most doctors think stress and nutrition play absolutely no role

in successfully achieving remission and staying there. A doctor would be

wise to stick around and see what we are figuring out on our own and as a

group and that it actually WORKS. The doctors have already told us about

these studies - how perfectly safe RAI is and what a instant CURE it is...

well WE DON'T BUY IT. Don't become another one of THOSE doctors - we could

do without.

But if you INSIST on shoving RAI studies at us, send us some of the LONG

TERM studies of RAI - I would like to see those - the ones that follow

patients for 5, 10, 20, 30 years. Where are those studies anyway??? Of

course in the end Liang, we all know numbers can be manipulated. Studies can

be manipulated. It will be actual people experiences that sway my opinion

every time. Real experience from real people. THAT SAYS SOMETHING TO ME.

I'm sorry to jump into this and keep this " discussion " going... I've been

hoping it would die out by now... but it is driving me nuts seeing RAI

presented as if it were no big deal. It is a big deal. And to WAY TOO MANY

people, it was the worst deal they ever got.

Pam B.

-- Re: Liang: RAI and pretibial myxedema

That is great! Good for Doris. My aunt did the similar thing!

However, individual case does not change the fact that quite larger

number of patients eventually did not achieve remission without

relapse after staying with ATD for long long time. How do you define

a reasonable long time, that is personal judgement.

It is still patient's choice what to do next after years of ATD. If

she or he decides to stay with ATD, this is one choice. If some goes

with RAI or surgery, I would think that would be reasonable too.

Those two methods offer patients to manage the disease from hypo

instead of from hyper, which is relatively easier.

Just do not like to scare people with some ideas not from facts

based on large studies. BTW, do not get me wrong, I also hate the

fact that some of the endos only present the other side of story and

deprived the patient the chance to try ATD first.

Best wishes,

Liang

> In a message dated 10/27/2003 4:51:23 PM Eastern Standard Time,

> leon_lz@y... writes:

>

>

> > But, other choices should be considered after a reasonable long

time

> > use of ATD.

>

> Granny has been on Tapazole continuously since 1979. Doris

is in

> remission after just over 4 years on Tapazole. Doctor's orders

would have them

> both thyroidless.

>

>

>

[Guest guest]

Hi, I'd like to comment for one of those who was pushed into RAI. I don't

know if it is good or bad, guess I'll find out but let me tell you I think I

would have taken a little more time to make a decission if I would have

known all of the cons. Needless to say I thought it was a quick fix and

completely safe.

I did a quick research but didn't dig deep enough. I was told I had a

disease that scared the heck out of me and I had 3 options 1. surgery was

too much of a risk 2.Will never go into remission so I could only take

meds for a year or so,

3. RAI It sounded like my only real option so I took it as fast as I could

so that I could get over this disease and on with my life. Well I wasn't

even told that Graves is forever until I read it on line and asked my doctor

and she said that we will keep it under control. Right now I'm scared of the

outcome but mostly I'm disappointed in myself for being weak and in my Dr

alittle too because I didn't get the info that could have changed my mind.

Nobody should feel bad about their decission and to each their own, I just

wish all the facts could have been one of my options. I hope I didn't

overstep my bountry with anyone. and I hope everyones treatment is the

right one for them.......Ruth

Re: Liang: RAI and pretibial myxedema

>

> That is great! Good for Doris. My aunt did the similar thing!

>

> However, individual case does not change the fact that quite larger

> number of patients eventually did not achieve remission without

> relapse after staying with ATD for long long time. How do you define

> a reasonable long time, that is personal judgement.

>

> It is still patient's choice what to do next after years of ATD. If

> she or he decides to stay with ATD, this is one choice. If some goes

> with RAI or surgery, I would think that would be reasonable too.

> Those two methods offer patients to manage the disease from hypo

> instead of from hyper, which is relatively easier.

>

> Just do not like to scare people with some ideas not from facts

> based on large studies. BTW, do not get me wrong, I also hate the

> fact that some of the endos only present the other side of story and

> deprived the patient the chance to try ATD first.

>

> Best wishes,

>

> Liang

>

>

> > In a message dated 10/27/2003 4:51:23 PM Eastern Standard Time,

> > leon_lz@y... writes:

> >

> >

> > > But, other choices should be considered after a reasonable long

> time

> > > use of ATD.

> >

> > Granny has been on Tapazole continuously since 1979. Doris

> is in

> > remission after just over 4 years on Tapazole. Doctor's orders

> would have them

> > both thyroidless.

> >

> >

> >

[Guest guest]

I am soooooooooo tired of seeing his name in the digest (which I

reluctantly went to to avoid the number of list posts flowing into

the inbox) and worse, I am tired of seeing his stinking posts

repeated again and again and again in replies to his stinking posts.

Can we please move on to something else????????????????

Elaine (who saw the endo on Monday and is too damn tired of the

threads here to discuss it!)

> Hi gang if we just ignore Liang and stop responding to his posts,

eventually he will go away when he realizes he isn't getting the

attention any more. thanks .

>