Re: Nuclear Scan and RAI

June 7, 2003

Hi Adrienne-

I cannot understand this. I think it's wonderful that you're doing so well

after 8 months. What I can't understand is that you're promoting your

choice for everyone when fully 1/3 of RAI patients don't do well.

I was never quite right at the outset but the real problems started after my

thyroid completely died 6 years post-RAI.

I don't understand why a person isn't allowed to take methimazole or PTU

when they're not having bad side effects. Maybe in your instance

methimazole wasn't the drug of choice but to imply an irreversible decision

like RAI is, perhaps, may be jumping the gun a bit.

No one will ever be able to convince me that RAI was the right choice for me

and my family (amd I'm married to a physician that deals with this quite

often) and it's been 16 years.

Take care,

dx & RAI 1987 (at age 24)

> Hello One and All;

>

> My name is Adrieanne, and I am a 40 year old woman with GD.

> This is my first time to post to this particular web sight. I have

> had GD for eight months now, that has been diagnosised for me and

> treated. I found out that I have GD after a major auto accident in

> Sept. of 2002. I was in the hospital for a total of 27 days. During

> which, I had four heart attacks. Don't worry, because I didn't feel

> anything. I had been induced into a coma. Everything that the

> doctors have done from the date of the accident, has greatly improved

> my life!!! Folks, let me repeat that for all of you, " EVERYTHING THE

> DOCTORS HAVE DONE,SAVED MY LIFE!!!!

>

> When the doctors felt that I was well enough from my injuries, they

> let me wake up. That's when I was given the news. Can you tell us

> what diseases run in your family. Both my mother and I started

> giving them a list. The last person to have this disease was my

> great grandmother. And yes I know that it's an autoimmune disease.

> There are other types of autoimmune diseases that run in my family,

> but this is the one that I have. In my particular case it was

> triggered by the auto accident.

>

> I can say that alot of what I read on these different web sights, I

> don't suffer from. I don't get depressed. I wake up each day

> thankful that I am still able to walk on earth! I don't care how

> bad the wheather is outside, I am happy to be alive. So, the next

> few thing that I say will shock alot of you, but it is the treatment

> that I and my family choose for me. When I say my family,I mean my

> husband, my grown children, and both of my divorced parents.

>

> I grew a goiter! It was huge, it became so big, it was becoming hard

> for me to eat food. Plus, it was starting to cut off my breathing.

> In a matter of 3 weeks after getting out of the hospital, my head

> stayed tilted back, because of the growth. I was Methimazole 10mg,

> and it was making me ill. Every time I took it I would end up

> throwing up for hours. Then I was put on Metoprolol 50mg. I could

> not take that either. That also, made me ill. In the mean time my

> weight was dropping. I went from 108 pounds at the time of my

> accident, to 143 pounds while in the hosital from all the IV's. Then

> when I got out of the hospital, I dropped to 83 pounds in 10 days.

> So, I went in for my check up with the trama doctor, and within 24

> hour I was seeing the endocrinlogist. I didn't even remember seeing

> him in the hospital.

>

> Within another 10 days I was at the hospital having the Nuclear Scan.

> Which was less than 3% radioactive!!!! You get more radiation out of

> an X-Ray for a broken bone, than you get out of the scan. So, don't

> be afraide of the scan. The next day I had the RAI done. I would do

> the RAI again, after being the way that I was. Once again I will say

> that it SAVED MY LIFE!!!

>

> Now after eight months, I went in to see my endo. today, and it DID

> NOT KILL MY THYROID. Yes, I do realize that I am one of the few

> women, that it didn't kill the thyriod. I am up to 150 pounds. I am

> now waiting for my blood test, to see if am Hypo or Hyper. The last

> time I weighted this much I was pregnet. RAI did not give me the

> Poper Eyes. I did not have or get the thyroid storm, like most

> poeple. In fact I wasn't sick at all. In all I can say it has been

> good for me. I will also say that the amount of RAI that is given to

> you, is based off you weight, and you body structure. Right now the

> docotr is not even considering have me do a second RAI. We think

> this time , will be able to take some form of medication.

>

> The only reason that I am sounding off, is because in some of your

> cases, I feel that yal have not been given enough information. T o

> make the porper decsions for your particular case. Just because meds

> work for one person, does not mean it will work for all. I will say

> that I am a very LUCKY lady, because, I live where the biggest

> Medical Center is in the world. I have access to the best doctors in

> the world. I live in Houston, Texas. I am very Thankful to live

> here. I will say that everyone need to make the decision as what

> step to take for their particular situition. To get more information

> you can contact these Orgranzations.

>

> 1. American Foundation of Thyroid Patients at

> P.O. Box 820195

> Houston, Texas 77282-0195

> ph.# or 1-

>

> 2. The Thyroid Society for Education and Research at

> 7515 South Main Street Suite 545

> Houston, Texas 77030

> ph.# or 1-800-THYROID

> WWW.the thyroid-society.org

>

> This happens to be where I got most of my information. I hope that

> this information will help some of you make the right choices for

> yourselves, and not based on someone elses belifes. Make informed

> decisions. After all we are talking about you health. You have but

> one life to live. So, live it well and educated.

>

> Eight months after my accident and after finding out I have GD, I can

> start doing activities. I can start walking for excerise, and

> hpofully lose some of this weight.

>

> Good Luck to One and All

> Sincerely,

> Adrieanne

June 7, 2003

Hi Adrieanne,

Welcome to the group. I, for one, am truly glad you are doing better after

RAI. No, I didn't go that route, but your choice is the same choice as many,

many others and for some people it may be the right choice.

I hope that in five or ten years, you are still in that category. There seem

to be two types of problems after RAI that we've seen here: those that occur

right after, and those that show up many years later.

A couple of observations: first, you don't seem to be trying to start a

family. The choice you made will not affect unborn children, or your ability

to bear them. Many young people (like U) were given RAI and have had

terrible problems conceiving children afterwards. Second, you mention a

pretty extreme and quick weight gain. For many people, that would have a

terrible effect on their self-esteem and impact their overall health

negatively. Hopefully you can manage your medication so that you don't go

hypo for long, and you'll be able to lose the weight. But I have seen plenty

of women who were treated with RAI and gained large amounts of weight that

they can't get off. Not all women, mind you, but enough to scare me as I'm

someone who tends to put on weight anyway.

The bottom line, as said, is that up to 1/3 of people who have RAI

subsequently have problems. Here, we speculate that it's even a higher

number, because often when post RAI women develop symptoms like joint pain

and chronic fatigue, they're told it's not related to their thyroid disease,

it's something else entirely--and when you're hypo and brain fogged, you can

believe the doctor when he's talking through his hat.

There are also women here who developed eye problems many years after their

RAI. I hope you do not become one of them. Jody may chime in on that--she

could tell you some stories!

Anyway, I want to let you know that no matter what your treatment, you are

welcome here and will find support here. Most of us are well aware of the

resources out there available for us, too. You might want to go to the

'files' section on the home page, and look at some of the resources compiled

there in case you find yourself needing them.

Best wishes,

Terry

>

> Reply-To: graves_support

> Date: Sat, 07 Jun 2003 05:31:56 -0000

> To: graves_support

> Subject: Nuclear Scan and RAI