RE: Hello! Need advice on RAI

September 16, 2003

the first thing that comes to mind here is, why did the dr cut the dosage

in half? Instead, he could have suggested Benadryl for the hives, or have

switched you to Tapazole/Methimazole. I've been on Methimazole for almost

2 yrs, and it's worked, as long as the dr knew what he was doing.

You didn't mention any of your labs and the values so am I correct in

assuming you do not have copies of any of your testing so that you can post

them? Most dr's in the U.S. will do this saying it's not working, so

therefore you must have RAI. Maybe you should rethink this and put it off

a little while longer while you check out the possbilities and if you

really want to do something so permanant to your thyroid.

My second Endo made me fail miserably on ATD's so that he could convince me

to have RAI which I was against in the beginning. I hate to admit it, but

at one point, he almost had me at that crossroads. I however changed dr's

and got copies of all the blood work this particular dr did, which ended up

only being TSH, T3 and T4. He should have been running TSH, FT3 and FT4

tests to know how I was doing. The FT3 and FT4 are free t3 and free t4

which shows how much is available to your cells (makes a definite

difference in how you feel). Too many dr's go by TSH which in the end will

make you hypoT which has many of the same symptoms. I was kept hypoT for

quite some time, and it was not any fun. I'm now on the maintenance dose

of 5 mgs once a day. I still take the Atenolol for heart palps and my

blood pressure, but it's much better than it was a year ago being

over-medicated.

Sandy~Houston

Original Message:

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

From: angelina5312002 lucille181@...

Date: Tue, 16 Sep 2003 10:45:22 -0000

To: graves_support

Subject: Hello! Need advice on RAI

<tt>

Hi, I haven't posted in a while. I am 32 and have been diagnosed

with Graves Disease for 18 months now. Though I had this for

approx. 12 years my

symptoms peeked over the last 3 years and finally the doctors decided

to check my thyroid. Graves caused hyperthyroidism. I started with

body tremors, 130 pulse rate, blurred vision, adrenaline rushes,

difficulty breathing, rapid heart rate, lost of memory, no

concentration, rage, and feeling like I was losing my mind. the

tissue around my eyes is swollen. This is a terrible disease that

people around you don't understand. They think you can control

yourself on your own. It doesn't work that way. After my first

thyroid scan/uptake my doctor decided to try 450mg. of PTU and put me

on beta blockers Inderal 80mg. After a month on the ptu I broke out

with hives and itched all the time. He cut my ptu in half. I felt

great for 2-3 months. After about 8 months I started to notice some

symptoms coming back. He said my lab work looked great and I will

see you in 6 months. During the next 6 months all my symptoms came

back. My specialist was dissapointed that the ptu did not work for

me. He sent me to a radiation oncologist whom set up another

scan/uptake. I had testing all last week. My uptake numbers were

really high. I am set up for an ultrasound and the radioactive

iodine treatment tomorrow. About 18 months ago I was against the

possibility of radiation treatment. Now, feeling the way I do I have

no other choice. I am still on bets blockers and have total body

tremors, eyes puffy, rapid heart beat, muscle weakness etc. The only

thing that makes me nervous is this radiation doctor is basing his

treatment on his own theory. He is taking the numbers of the uptake

and charting them. He is trying to give me an exact ammount of this

to make me normal, not Hypo. Chances are this will not work the

first time and he will have to give me another dose. Could someone

let me know their opinion on this. Good luck to all out there who

are suffering with this disease. Thank you, Lucille

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September 16, 2003

Hi Lucille. I'm reprinting your post below for anyone who missed it the

first time.

Having had active Graves Disease I can begin to understand the hell

you've been throught the last few years. I strongly urge you to

reconsider your decision. If you can, please check the archives for a

post I wrote under the address cfyoung2@... on ATDs. If it's too

much trouble, please email me off list at cfyoung2@... I'll get it

to you. It's not a perfect article but it fairly decently outlines a

basic protocol for ATDs. YOU DIDN'T HAVE IT!

*You were started at a probably inappropriately high dose, which is

likely why you had a reaction.

*You were drastically reduced to what, 250? And then kept on that dose

for 8 months or lowered at all?

* Your doctor had you go 6 months without monitoring before you were in

remission for a year?

Again, I urge you to give ATDs another chance, starting at 300, then

gradually reducing. You may want to try Tapazole, which would mean

starting at 30.

By now you know the reasons not to have RAI and you've heard enough of us

here who've had it (actually, not me) go through coping with the fallout.

Here's another reason not to have RAI: do you know anything about how

your doctor manages hypo patients? Does he go by TSH alone? Does he

believe in the value of Ft3 testing (and know when it is needed) and

antibody testing, and does he have experience with thyroid replacement

hormone other than synthroid or T4?

We'll respect and support you in this decision making but please also

bear in mind that pitifully few people who've had RAI, even among those

who suffer none of the serious after effects, feel that they made a

completely informed decision. You didn't have a solid enough experience

on ATDs to make an informed decision.

take care, Fay

On Tue, 16 Sep 2003 10:45:22 -0000 " angelina5312002 "

writes:

> Hi, I haven't posted in a while. I am 32 and have been diagnosed

> with Graves Disease for 18 months now. Though I had this for

> approx. 12 years my

> symptoms peeked over the last 3 years and finally the doctors

> decided

> to check my thyroid. Graves caused hyperthyroidism. I started with

> body tremors, 130 pulse rate, blurred vision, adrenaline rushes,

> difficulty breathing, rapid heart rate, lost of memory, no

> concentration, rage, and feeling like I was losing my mind. the

> tissue around my eyes is swollen. This is a terrible disease that

> people around you don't understand. They think you can control

> yourself on your own. It doesn't work that way. After my first

> thyroid scan/uptake my doctor decided to try 450mg. of PTU and put

> me

> on beta blockers Inderal 80mg. After a month on the ptu I broke out

>

> with hives and itched all the time. He cut my ptu in half. I felt

> great for 2-3 months. After about 8 months I started to notice some

>

> symptoms coming back. He said my lab work looked great and I will

> see you in 6 months. During the next 6 months all my symptoms came

> back. My specialist was dissapointed that the ptu did not work for

> me. He sent me to a radiation oncologist whom set up another

> scan/uptake. I had testing all last week. My uptake numbers were

> really high. I am set up for an ultrasound and the radioactive

> iodine treatment tomorrow. About 18 months ago I was against the

> possibility of radiation treatment. Now, feeling the way I do I

> have

> no other choice. I am still on bets blockers and have total body

> tremors, eyes puffy, rapid heart beat, muscle weakness etc. The

> only

> thing that makes me nervous is this radiation doctor is basing his

> treatment on his own theory. He is taking the numbers of the uptake

>

> and charting them. He is trying to give me an exact ammount of this

>

> to make me normal, not Hypo. Chances are this will not work the

> first time and he will have to give me another dose. Could someone

> let me know their opinion on this. Good luck to all out there who

> are suffering with this disease. Thank you, Lucille

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September 16, 2003

Hi Lucille,

It sounds like you were very poorly monitored while on PTU. The recommended

starting dose is 300 mg and inappropriately high doses will cause hives. The

dose is reduced after 6-8 weeks and the recommended maintenance dose is 100-150

daily with blood tests every 4-6 weeks. Even if your labs remain stable on a

maintenance dose, you shouldn't go longer than 3 months without labs.

In general, the other ATD, methimazole, can be easier to manage.

It's not generally recommended to use a RAI dose that's too low. RAI either

destroys or mutates the cells at its path. Mutated cells often become cancerous

although this can take many years. Best to you, elaine

September 16, 2003

Angelina,

There are many red flags on your post. First of all, any patient on ATD's,

especially in the beginning, needs MONTHLY labs and monitoring, not 6

months! To drop your dose in half and send you on your merry way is

irresponsible (to put it mildly). You need to know what your labs are, have

the proper labs, and learn to make intelligent decisions about your

medication levels. None of that happened. You NEVER cut a dose that high in

half, and the fact that you felt good on it for a long time would be, to me,

an indication that you respond very, very well to ATD's.

Next red flag is the vision thing. RAI when you have any eye involvement at

all is a red flag. You may end up with full-blown thyroid eye disease. It

might scare you to look at Reynold's pictures of herself with this on

the home page, but you really should do it. Do NOT go blithely into RAI

without educating yourself, or you may end up wondering, for the rest of

your life, why you did it. You see, RAI doesn't kill the antibodies that

attack your thyroid, only the thyroid itself. You still have Graves. Just no

thyroid! Those antibodies can attack your eyes and often do, after RAI, with

much more severity than otherwise.

For me, the thought of being hypO, which is where you will inevitably be

after RAI, is gruesome. When I'm hypo, I can't think straight, move, stay

awake, or even eat a normal diet without gaining like a big balloon-lady. If

I had no choice but to be either hyper or hypo, I'd chose hyper any day.

Hypo is the most miserable state I've ever felt.

RAI is not an exact science. You say your doc has a theory about picking the

right dose--well, long story short, that's been tried before. Sorry, but

most everyone ends up, after a long struggle to figure out medication

levels, without any thyroid function at all, and needing to be on medication

to replace the natural thyroid hormone, for the rest of their life. And, the

meds are never the same as home-made (so to speak) so many people are

miserable for the rest of their lives on them, from what I've seen.

So, you trade a possibility of remission from the ATD's--administered

properly of course--for a lifetime of having the same sort of lazy doctor

who didn't take proper care of you on the ATD's, in control of supplementing

your thyroid hormone.

Not much of a tradeoff, in my opinion. He didn't monitor you well, didn't

drop doses properly, didn't offer you the option of switching

ATD's--probably left you at too high a dose in the first place which is

often when people get the hives, too.

Personally I'd start over, with another doctor. Get proper labs. Share the

results here. Go on a proper level of ATD's, get monitored MONTHLY, slowly

lower your dose to a maintenance level, and live life without eating

radioactive waste. But, that's just one person's opinion.

Terry

>

> Reply-To: graves_support

> Date: Tue, 16 Sep 2003 10:45:22 -0000

> To: graves_support

> Subject: Hello! Need advice on RAI

>

> Hi, I haven't posted in a while. I am 32 and have been diagnosed

> with Graves Disease for 18 months now. Though I had this for

> approx. 12 years my

> symptoms peeked over the last 3 years and finally the doctors decided

> to check my thyroid. Graves caused hyperthyroidism. I started with

> body tremors, 130 pulse rate, blurred vision, adrenaline rushes,

> difficulty breathing, rapid heart rate, lost of memory, no

> concentration, rage, and feeling like I was losing my mind. the

> tissue around my eyes is swollen. This is a terrible disease that

> people around you don't understand. They think you can control

> yourself on your own. It doesn't work that way. After my first

> thyroid scan/uptake my doctor decided to try 450mg. of PTU and put me