Your Advice please...

[Guest guest]

I was recently diagnosed with papillary cancer (phase 3)and just had

complete thyroidectomy (along with removal of some lymph nodes)...

I've got an appointment set with an endocrinologist to have RAI. I'm

getting some conflicting direction on preparing for the test and

would love to hear what you've experienced.

-How many weeks did you have to be hypo before the RAI treatment

-Did you have to go on an iodine-free diet (i.e. no fish, soy, etc.)

for a number of weeks before the RAI

-Were you hospitalized for RAI -- or were you allowed to be home

(albeit secluded).

Any advice you can provide would be greatly appreciated. THANKS!

[Guest guest]

Jules,

I have just joined in to the group here, but have gone through the thyroid

scan routine for 2 years now. I am actually almost at the 2nd anniversary

of my first surgery (I only had one side removed the 1st time (inconclusive

FNA and frozen sections), then had to have a second surgery 2 weeks after

the first to have the other side removed). The first time I had to be hypo

I did not do the iodine-free diet. I was miserable. Because I already had

vacation plans in the works I was put on cytomel for about a month before I

had the RAI and went off the cytomel on the last Friday of my vacation. By

the following Saturday I thought I had the flu. I woke up with all sorts of

aches and pains, my joints hurt, including my ankles and elbows and wrists.

I thought that on top of everything else I was going through that now I was

coming down with some sort of yucky flu. Turned out not to be the flu but

just the throes of being hypo. My face swelled, my hands and feet and

ankles were also swollen - it was not pretty. My wedding ring hurt, it was

so tight, and I couldn't get it off. And I couldn't eat, literally couldn't

eat, but gained weight anyway, and on and on. Well this past summer when I

had to go back and redo my scan I decided to try the iodine-free route and

though I was just as hypo as before I functioned much better this past

summer. Nothing was swollen this last time, I didn't have the joint pain

that I had the year before and though I was still kind of cranky it was not

nearly as bad as the paranoia I went through the first time. It was tough

finding low-iodine foods, but I think, at least for me it was really worth

it. I just did the iodine-free diet from the time he took me off the

synthroid and switched me just to cytomel.

I was off all medication for two weeks before they did my scans. Both times

the endo took me off the regular medication routine and put me on cytomel

first, because it clears out of your system quicker than the other drugs of

choice (has a much shorter half-life). Now, I am on both synthroid and a

very low dose of cytomel, because even though my TSH got down to 0.0 (lovely

place to be - no sleep, eating the wallpaper off the walls, muscle twitches,

rapid heart beat) I was still really sluggish and cranky (verbally

threatened my endo) on the synthroid alone. Do not plan to do much while

you are hypo - you will be really disappointed at what you can't get done.

My husband basically put a moratorium on me driving (I ended up in strange

places a couple of times - basically got lost) and he didn't let me cook (I

boiled a pot of water dry - can you burn water?). I couldn't complete a

sentence without losing a word, and once I chewed my department head out in

the middle of the hall for something really minor (I am not a

confrontational person). I was a scary person. I think that my symptoms

are not all too uncommon, though I believe there are people who get through

it with less hassle. Again, my symptoms were much reduced the second time

when I seriously restricted my intake of iodine. The first time through I

thought I was losing my mind and am very glad that I didn't repeat that

performance the second time.

Hospitalization depends on the dose that they give you. I was not

hospitalized as they gave me the maximum dose that they could without

hospitalizing me (I think it was around 50 mcs, but can't be 100% certain

about that). I did have to stay away from my family - no hugs or kisses. I

had to use a separate bathroom and I spent a lot of time flushing and

running water.

Praise be to God, my scan this summer was clear, and my thyroglobulin was

non-existent. So I get to skip the scan process until 2005, according my to

endocrinologist. Still have to get the blood tests, but those are easy

compared to the scan.

Good luck.

Michele Marini

Your Advice please...

I was recently diagnosed with papillary cancer (phase 3)and just had

complete thyroidectomy (along with removal of some lymph nodes)...

I've got an appointment set with an endocrinologist to have RAI. I'm

getting some conflicting direction on preparing for the test and

would love to hear what you've experienced.

-How many weeks did you have to be hypo before the RAI treatment

-Did you have to go on an iodine-free diet (i.e. no fish, soy, etc.)

for a number of weeks before the RAI

-Were you hospitalized for RAI -- or were you allowed to be home

(albeit secluded).

Any advice you can provide would be greatly appreciated. THANKS!

[Guest guest]

Hi (is it Jules?), and welcome to the group. You've come to the right

place for support and info!

> I was recently diagnosed with papillary cancer (phase 3)and just had

> complete thyroidectomy (along with removal of some lymph nodes)...

> I've got an appointment set with an endocrinologist to have RAI. I'm

> getting some conflicting direction on preparing for the test and

> would love to hear what you've experienced.

This is one of the most FRUSTRATING things about thyca, to me - the

conficting and often inaccurate information given by the medical

community.

> -How many weeks did you have to be hypo before the RAI treatment

The usual time is 6-8 weeks (many doctors put patients on cytomel, a

short term hormone, for all but the last 2 weeks). However, sometimes

it is done for a slightly shorter time. The important thing is to

have a TSH blood level of, usually, 30 or abov, prior to ingesting the

iodine.

> -Did you have to go on an iodine-free diet (i.e. no fish, soy, etc.)

> for a number of weeks before the RAI

Actually, it's a low-iodine diet, not a no-iodine diet :-), and it is

done for 2 weeks prior to dosing. I would absolutely go on one even

if it was not recommended (it was, for me). It's a little more

involved than just no fish or soy, though. Here's a link to the

archives about the LID (I also have some info in the links below my

sig).

http://groups.yahoo.com/group/Thyca/message/17607

I highly recommend the diet on the ThyCa website. I was given a

rather..um...screwy version of the LID by my hospital:

www.thyca.org

the diet and a cookbook (which has the diet in it) are linked on the

left side of the page.

There are also a ton of recipes in the archives of this list:

http://groups.yahoo.com/group/Thyca/message/29097

> -Were you hospitalized for RAI -- or were you allowed to be home

> (albeit secluded).

I was hospitalized. Unfortunately, if you live in the US, it is up to

the states to determine protocol for this, and many places do send you

home. It sometimes can vary from hospital to hospital, I understand.

Even if you are hospitalized, you should take precautions after coming

home:

ARCHIVE INDEX - POST RAI PRECAUTIONS

http://groups.yahoo.com/group/Thyca/message/23658

Please tell us a more bit about your situation - are you going to be

hospitalized? Have you been told to follow a LID? Let us know how we

can help!

Cheers,

Alisa

Currently - TSH 0.09, 140mcg Levoxyl

2/15/2002: Nodule found 2/27/2002: FNA

3/4/2002: Hysterectomy/oopherectomy-possible ovarian cancer - BENIGN!!

4/9/2002: TT - Stage 2 pap 2.5 x 2 x 1.6 cm nodule, dx Hashimotos

5/28/2002: 100 mCi RAI

12/16/02: WBS (5 mCi): clean scan - no thyroid tissue in body!!!

Age: 49 -- Location: near Seattle WA --- Check out my posts:

Radioactive Girl - http://groups.yahoo.com/group/Thyca/message/19472

My LID - http://groups.yahoo.com/group/Thyca/message/15872

My RAI - http://groups.yahoo.com/group/Thyca/message/15873

LID stuff - http://groups.yahoo.com/group/Thyca/message/25430