Re: RAI - this is support?

[Guest guest]

In a message dated 5/28/2003 7:05:07 PM Central Daylight Time,

nbalant@... writes:

> There are many people who come to this group having chosen RAI, and

> personally I feel they would benefit from hearing from someone who's happy

with the

> choice.

I don't know that I'm happy with the choice, but when I was diagnosed with

Graves in 1979 I lived in Edmonton, Alberta. The doctors there seemed to know

as little as I did. I had been feeling awful for months. My neck was swollen.

I was lucky if I slept 2 hours a day. I dropped 35 pounds and ate 10 times

a day. I had never heard of Graves. My GP kept prescribing antiobiotics and

said I had a lymph gland infection. Then one day I was at a soccer game

watching my son and another parent, who just happened to be a doctor, came up to

me

and asked me if I had thyroid trouble. He had been watching my eyes and the

blinking and the hyperactivity. I went and saw him the next day and my heart

rate at rest was 145, with activity it jumped up to nearly 300. They treated

me with RAI the following day. There was some discussion of ATDs, but from

what I could learn at the time, they were fairly dangerous in terms of the side

effects and unless you had careful monitoring, there could be problems, so I

opted for RAI. And I don't think RAI side effects were very well known then

either. RAI worked, I felt significantly better in a few weeks. Heart murmur

(sp?) disappeared with the first month. Sleep and weight stabilized. And I

went into remission for 23 years without even realizing I was in remission and

it

could come back again like it did in the form of TED last fall. So I'm still

not sorry I did it all those years ago. Of course, I would prefer not having

to deal with TED now, but for 23 years all I had to do was have my thyroid

tests done once a year and take a small dose of thyroid hormone once a day and I

have remained stable. And given the situation in 1979, I'm not sure I really

had a choice.

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 5/28/2003 10:46:35 PM Eastern Daylight Time,

TrayExo@... writes:

> Then one day I was at a soccer game

> watching my son and another parent, who just happened to be a doctor, came

> up to me

> and asked me if I had thyroid trouble.

I like that man.

Betty

PS If your are expecting an answer from me, and you don't get it, please

email me back with a friendly reminder.

" To err is human; to forgive, divine. "

[Guest guest]

Hi!!

I have never chimed in on neg. posting before because I dont like

to precipitate a bad thing. But.....

This is a Graves disease support group. We totally or I will speak

for myself I support you. This is NOT an anti RAI group. I feel

sorry that someone has started you on on a bit of negativity. This

is an extrememly supportive and knowlegable group. I have learned so

much here I cant even begin to put it all into words, and I would

be a lost puppy out there in Graves disease land if I didnt have the

knowledge of this group. I check the group each and every day before

work, and again when I get home and learn every day. I even read

about all you moms out there with children dx with graves, all the

newly pregnant soon to be moms, women over 40,women

perimenapausal/postmenaposal,cycle erregularities,you name it I read

what you all have to say and I keep learning. So please stick with

the group. Dont let a bad apple apple spoil your day. This one group

worth sticking with.

Luci

> I must say how relieved I am to see some of the replys that have

been made

> about my negative e-mails as I thought I had " lost " an avenue to

turn to in case

> my experience with RAI doesn't remain positive.

> As I told that person I am thrilled each morning I wake up from a

full nights

> sleep and I'm not feeling miserable (like I was before or like I

could

> possibly become in the future). I don't know if how I feel now is

how I will feel 2

> days from now or for that matter 2 years from now, but the point I

wanted to

> make is that I'm not having the regrets that I was certain I was

going to have

> the day I went in and had the RAI.

> My faith is renewed! for that I thank ya'll.

>

>

>