I need some feedback-general GD questions.

[Guest guest]

Hello all, You know what, this whole GD thing is starting to scare me. I guess

when I was originally diagnosed (jan. 03) it was done in such a casual manner

from my endo that I thought " oh, no big deal " . But it has become very clear

that it is a big deal. I am hyperthyroid and yet I have not had an antibody

test. My endo said that there is no way to test for the GD antibodies. So any

info on the test would be appreciated. My eyes hurt and I was lead to believe

that RAI would reduce the swelling (not from my endo, but from another person,

who has gone through RAI years ago). I am going to cancel my RAI apppointment

and go for the surgery. Alot of this confusion comes from endo and his

personality. He seems to to have little affect when talking to me about GD. I

am sure he would have the same sort of rational tone if I had an alligator

attached (via large teeth) onto my torso. When I went for the Uptake scan I

had a 24 hour reading of 61%. I am pretty shakey and hot and so horribly

anxious all the time. My endo said my T4 and T3 were through the roof. Not very

specific, i know. I was also on Tapazole (an earlier message) at 20 mg/dy and

had a horrible allergic reaction. Which I do not want to go through again. I

am willing to try PTU but my doc said that I could have " liver melt " from the

meds and freaked me out. Thanks for all your help support and information so

far. -

andrew seagram wrote:[Non-text portions of this message

have been removed]

[Guest guest]

-----Original Message-----

From: andrew seagram

" I was also on Tapazole (an earlier message) at 20 mg/dy and had a

horrible allergic reaction. Which I do not want to go through again. I

am willing to try PTU but my doc said that I could have " liver melt "

from the meds and freaked me out. Thanks for all your help support and

information so far. - "

Hi ,

I haven't been a member here all that long and I rarely post but the

above made me furious!! I was on Tap and broke out into hives also. I

have been treated during the last 6 years with PTU. There was a two year

stretch where I required NO medication at all. It is very possible to

achieve remission using either PTU or Tap. The PTU doses I was on in the

past were pretty high and I have no liver problems at all.

Canceling your RAI sounds like a step in the right direction! If you are

already having some eye symptoms RAI could make the condition much, much

worse and even cause permanent vision problems. I wouldn't opt for

surgery right now either, that's my opinion. My first endo was very

blasé about the whole thing too, suggesting on my second visit that I do

RAI. My first suggestion to you is get another endo, FAST! One who is

more up to date on today's options. My new endo is great! She's willing

to do things MY way, not hers. She monitors me, advises me and then WE

make the decision on how to proceed.

In the last six months my thyroid levels held steady on their own, still

not " normal " but they held steady and I wasn't on any medication. At my

last visit last month she suggested we try the low dosage of PTU, one 50

mg. Tablet per day, and see what happens. Your endo so far doesn't sound

like he/she is willing to work with you at all. Remember, they work for

you! Either make this endo work for you or fire him!

My last advice, get a hold of Elaine 's book. I think it's called A

Practical Guide to Graves Disease or something like that. In it is some

wonderful information! Info on tests and treatments, on the disease

itself and basically what you should know about your disease.

in MA, USA

Diagnosed w/Graves, March 1997

So far refusing RAI Treatment and Surgery!!!

On one PTU per day, maintenance dosage

My endo says " I'm like a simmering pot of water, so close to full boil

but maintaining the simmer "