Re: I-131 RAI Treatment

September 18, 2003

Lucille,

Thanks for your report on RAI. I would very much like the hear more

reports on how you feel as time goes on.

I will consider RAI after two years on TAP if I can't go into

remission. I'd like to hear the experiences of people who go through

with RAI.

Jae

September 18, 2003

Lucille, sorry I don't have any information to share with you as I refused

RAI. I can understand the concerns of the supervisor though. I'm curious

what the dr's meant that you could have 'normal' contact for 3 hours?

I know I've heard many stories about how long we actually need to not have

direct contact with another person (no kissing, sex, etc, but I'm a little

confused on what they told you. I've heard 7 days from my dr, now 10 days

from your dr? Can you elaborate on that?

I have a friend who had RAI back in March of this year. She didn't have

the uptake scan done right before her RAI and her TED worsened. They

actually should not have done the RAI without the currect uptake but

somehow they managed to get it done. sigh. She said she felt great for the

first 2 months (that is not for everybody though) and then started feeling

badly and her TED got worse. By 4 months, she was feeling rather badly and

unable to work, but I've not heard from her yet on her last visit with the

DR. It's my understanding though that the hyper symptoms can worsen once

the RAI is done while the thyroid dies off, so keep tabs on how you're

feeling and the severity of it.

Sandy~Houston

Original Message:

-----------------

From: angelina5312002 lucille181@...

Date: Thu, 18 Sep 2003 13:36:39 -0000

To: graves_support

Subject: I-131 RAI Treatment

<tt>

Hi, I want to thank everyone for their opinion and advice on the RAI

treatment. I went through with the treatment yesterday 09/17. You

feel kind of uncomfortable when you must wear rubber gloves and you

take a pill directly from a paper cup under a lead container. I also

feel like I have the plaque or something since my doctor says I can

go back to work w/ restrictions (3 feet from any individual for 10

days, with a couple hours a day with normal contact),though my

supervisors said I can't return to work until the 10 days are over.

Which I guess I understand. Anyways, I guess I won't start seeing

improvement for 2-6 months. Has anyone heard of being put back on

the ptu after the rai treatment to feel better in a shorter time

block. I am continuing to take things one day at a time. The effect

I feel today from the I-131 pill is a headache and sore throat. Of

course I still have all the symptoms from graves disease and

hyperthyroidism, though I hope they decrease soon. The only thing

that terrifies me is that my eye problems progress. The only eye

problems I had before treatment were puffiness and a slight wide open

stare. I guess time will tell if this worsens. Thanks for

listening, Lucille

</tt>

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<tt>

September 18, 2003

On Thu, 18 Sep 2003 13:36:39 -0000 " angelina5312002 "

writes:

> Hi, I want to thank everyone for their opinion and advice on the RAI

> treatment. I went through with the treatment yesterday 09/17.

Hi Lucille. I heard a lecture recently where the speaker quoted an

English (subj., not nationality) professor who said that Americans have a

hard time with decisions because look at the etymology - homicide means

to kill a person, decide means to kill off your other options. So, you

made an irreversible decision and don't look back now.

> Which I guess I understand. Anyways, I guess I won't start seeing

> improvement for 2-6 months. Has anyone heard of being put back on

> the ptu after the rai treatment to feel better in a shorter time

> block.

I'm not so sure. With top notch monitoring may well feel better sooner.

You'll have days without trembling, diarrhea or frequent visits, and many

of the other Graves symptoms. Let yourself enjoy them.

The only thing

> that terrifies me is that my eye problems progress. The only eye

> problems I had before treatment were puffiness and a slight wide

> open

> stare.

But here are my homework suggestions:

- Book an appointment with a good ophthalmologist, NOT optomotrist,

someone with experience with thyroid eye disease. Elaine may have

some suggestions for drs. in your area from her research for her new book

(which I hope is coming out soon).

- You can check the archives or contact me offlist at cfyoung2@...

for a post from Jody Spitale (maybe under the name Luckystrike)

concerning eye exercises that you may want to start already. (I'll see if

I can dig it up and forward it to the list but it's on my other account

that I can't check right now.)

-Start taking Omega 3. It's a good thing anyway and has been discussed

but there also seems to be evidence of its benefits for TED.

-Find out everything you can about hypothyroidism. That your dr. wants to

keep you on PTU is kind of good in that it may mean that he wants to make

your descent into hypoT gentler and will monitor you frequently, but it

may not. You need regular and frequent bloodwork till you're stable on

thyroid hormone replacement and even then will need regular (more than

once a year) labs. I don't know the best sources, not being hypo but you

may want to start with Shomon's Living With Hypothyroidism and her

newsletter and Thyroid Power by Dr. Shames. (I think it was this second

book that really clarified things for me about thyroid replacement

hormone.)

- Your endo must have experience with and value thyroid supplements

beyond synthroid or the T4 alternatives. (Look at your keyboard - I

almost typed T$ instead of T4. Synthroid is the most prescribed drug in

the nation.)

Gotta run but best of luck. Take care, Fay

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September 18, 2003

I've been on tapazole for 4-1/2 years. At my job I had a coworker

whose husband got graves and took RAI. Since they had young children

he checked into a hotel for 2 weeks. His wife used to go a visit with

him but not the kids. I don't know how he's doing since I don't work

there anymore. He found it hard to be away from his family.

Kat1

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