Dawn's update - taking ATD again.

[Guest guest]

Well! Went to see the endocrinologist again today. This is the first time

I have seen the same specialist twice, I like his attitude but we differ on

what treatment I should have. I really appreciate the fact that I am allowed

an opinion with this Dr and that he listens to it tho'.

I have written a brief recap at the bottom for anyone who wants to read the

whole story.

The endo today told me that my decision to have surgery if I have to have

radical treatment, is rendered impossible by the fact that my thyroid gland

is too " vascular " . I asked what this meant and it means it is full of blood

and if operated on, I could die from bleeding. Apparently my case had been

taken to a meeting and discussed, everyone agreeing that surgery is too

risky for me. I don't know what to think now... is this a scare tactic? I

can't think that it is.

I nearly cried in the face of this RAI dead end. I am so pissed off that I

only have one of the original three options left open to me. all these

options are horribly unattrative to me (although I know I should be grateful

that there is any treatment even if it is all 60 years old!) and the one

left is the one I dislike and fear the most!

I felt that I was being bullied into taking RAI as my ONLY option and making

the decision quickly. I said I couldn't see the point of rushing me into it

as it doens't take effect for months sometimes for 18 months after you take

it, so why rush? This delay in effect is one of my reasons for not wanting

RAI.

I'm glad he listened to me, but this is the bit you can't tell the doctor -

I am still scared I'm making the wrong choice and of becoming ill with

something else and ending up with thyroid storm. I had to call the doctor

out on monday night because I was doubled up on the floor in pain, vomitting

and feeling really lousy.... I was diagnosed with colic. It feels like

everything is getting worn down in me and will eventually wear out

I explained that I didn't want RAI because I particularly don't want to make

my eyes worse and want to wait a bit for remission - AND because I still

would like to test positive for antibodies before anything radicle (I never

know how to spell that!). At this point my endo went and consulted with his

boss. When he came back we discussed my white blood cell count and how it

was low before I took ATDs and how it didn't drop remarkably when I did take

them. So I'm back on the cabimazole (is this what you USAers call

methimazole??) and going to have blood tests to see what happens.

As I left, I asked the endo if this was a stupid choice that was being made

just because I was stubborn. He said no, that RAI is preferred because it

is all over and done with and finished and you don't have to take any

tablets and that's why he prefers it and it's what he would do, and that it

was fine to try the Cabimazole again. I just don't know what to think

anymore when doctors tell me things.... are they telling me the truth, or

are they trying to protect me from it? are they warning me about something

true, or are they trying to scare me into the cheapest treatment?

(It was time to go so I didn't get into another discussion about how,

actually, you WILL have to take tablets for the rest of your life after RAI,

once you go hypo.)

So that's the story so far... sure I will have lots of questions again once

this has all settled in my head.

Thanks all again for talking

DAWN.

PS

As a recap:

I was diagnosed hyperT in July in Australia, came to the UK where my dad is

poorly and was rediagnosed as hyperT in August. The first endo in Australia

said I did not have a thyroid related problem; the ultrasound in the Uk in

August indicated thyroiditis, the first endo in the UK in September said I

had nodules and the uptake scan (October) indicated Graves Disease???? So

far I have not tested positve for thyroid antibodies and this includes TSH

receptor antibodies which were tested right at the beginning.

I started taking Cabimazole (ATD) in August, changed to PTU because I had a

low white cell count and this continued whilst on PTU so that was also

stopped. Since then, I have been on Propranolol 180mg a day and still have

palpitations and arrythmic heart beat somtimes.

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