Graves and Treatments, My Opinion

[Guest guest]

Hi everyone,

I think all treatments for Graves have flaws. There is not one treatment

that addresses directly the fact that our immune system is broken.

Now, I think some of the recent discussion of ATDs vs RAI got out of hand. I

think Liang has every right to post any related on topic information he

wishes. Did I read all those studies? Nope. Why? Because I personally do not

agree wit RAI as a treatment option. That is my choice. It is not a " right "

choice and it is not a " wrong " choice, it is merely my choice. Just like it

was Liang's choice to have RAI done. Was he wrong? No. Was he right? No. He

simply made the best decision for him. But I defend Liang's rights to post

information relevant to Graves Disease and it's treatments.

I was diagnosed 6 1/12 years ago with this stupid disease. I have been on

and off ATDs in that time. When I was first diagnosed my resting heart rate

was about 120 beats per minute. I was put on ATDs and a beta-blocker. The

beta-blocker and ATDs had me feeling somewhat " normal " in a short amount of

time. From there I was weaned off the beta-blocker and started the adjust

the ATD game. Take more PTU, take less PTU, switch to tapazole, take more

tapazole, break out in red itchy rash, switch back to PTU. Labs every few

weeks, sent to endo, hated endo, back to PC. PC overdosing me on ATDs,

feeling lethargic and sluggish. Reducing ATDs over and over and still

feeling sluggish. After three years of the thyroid level yo-yo game I took

myself off ATDs.

At first, I was hyper. I could feel it. Went to PC for labs regularly. TSH

was always >0.01, hormone levels were only slightly elevated. PC continued

to let me go along with no meds as my body seemed to be holding my thyroid

levels fairly steady. After a while though they were worried about my TSH

always being so low so I was sent to my new endo. New endo started me back

on PTU, gained 30 pounds and lost all energy in one year's time. I have

again removed myself from medication. Endo does not believe in anti-body

testing. She says she knows my immune system is out of whack so testing for

it won't do anything. Sigh.

Does that sound like good medical care? Nope. Does it sound like ATDs are

the answer, not by a long shot! But, I still have a thyroid and if they ever

find a cure for this stinking disease I will be a great candidate for the

cure. My point, ATDs aren't a bargain either. Most endos do not treat the

patient, they treat the patient's lab results. With the mismanagement in my

own care I can see why many patients turn to RAI. I have also watched my

brother-in-law be mismanaged on ATDs. I have been working with him to make

him a more active participant in his care. He has been hypo/hyper so many

times in the last three years since he was diagnosed that he almost had RAI

himself.

Why do I choose to not have RAI. It's simple really, it's radiation. I don't

like radiation. Radiation and caner have been linked to one another over and

over again. For that reason I get a few x-rays as possible too. At the

dentist I do not get yearly x-rays. I only get x-rays when a problem arises.

Same for my child, I keep his x-rays to a minimum too. There is so much

cancer in our society today that I try to keep our exposure to any cancer

causing agent to the bare minimum. To that end we also eat an all natural,

carbohydrate balanced diet in my house. It was after we switched to an all

natural, reduced carbohydrate diet that I saw my body need less and less

ATDs.

I will continue to advocate ATDs over RAI to anyone new to Graves who joins

here. Why? Because I believe that ATDs are the lesser of the three evils,

RAI, ATDs or thyroidectomy. I'm taking ever possible step I can to ensure

that I will have my thyroid should anyone find a way to fix my broken immune

system. And I think too many new Graves patients are tricked into RAI by

endos who aren't comfortable with ATDs. Is that good medical care? Nope.

This disease, it's treatments and it's " treators " (aka endos) all stink.

in MA USA

Graves since March 1997

Currently on 0 PTU tablets per day

Was euthyroid from 2000-2002

Will not undergo RAI