RE: Dawn's update - taking ATD again.

November 15, 2000

Dawn,

They usually pretreat before surgery with iodine to reduce the vascularity.

My cousin was on it for 7 days before her surgery. Iodine fixes the tissue.

Is there another endo you can see?

November 15, 2000

Also Dawn, with your lack of antibodies, I'm beginning to think you have

another form of hyperthyroidism besides GD. This could be familial

dysalbuminemic hyperthyroxinemia or a defect in the TSH receptor. Both of

these and several other conditions are commonly confused with GD, and they

run the antibody tests to prove that it is one of these disorders and not GD.

The treatments vary depending on the conditions.

November 15, 2000

Dear Dawn,

It sounds like you're really doing well. You're holding your own, and

fighting for your good health. Remember, the thyroid imbalance is just the

symptom, not the cause of your illness. So, removing the thyroid does not

address the underlying nutritional imbalance, and in fact guarantees illness

for life. Most medical doctors don't understand these things--they are

trained just to treat symptoms, even if the results make you worse than you

were before.

Keep standing up for yourself--you are not alone--we all are standing with

you. I hope you feel better soon.

Best,

AntJoan

November 15, 2000

Hi Dawn, I'm sorry to hear about the news from the Endo. However, once

again they are pushing how easy it is to " just take a pill " . It's what

happens afterwards for the rest of your life that's still the problem.

Especially worsening the TED.

Elaine may be able to shed some light on this but isn't there an iodine

solution or some sort of solution/medication prior to surgery to " harden "

the thyroid thereby making it easier to remove?

If at all possible, I'd hold out for more info. It sounds like you're in an

HMO program? Perhaps Elaine can give you more info about " vascular "

thyroids. I know this is scary but apparently they're willing to give you

more time. I wish I had the words to make you feel better but know that

we're here to listen, Mona

Dawn's update - taking ATD again.

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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November 15, 2000

Hi Dawn. I recently told you I had just had RAI in August after a terrible

battle of resistance for years. Already I feel better, and it's only been

three mos. stand it, everybody does not automatically go hype, tho that;s

the norm; and, everybody who is hypo does not necessarily have trouble with

it. My eyes have been going bad for three years anyway so I didn't see a lot

to lose there. You're more likely to have thyroid storm not taking some form

of treatment, Now that you've started tapazole, remember it takes about

three weeks to kick in. I'm so glad you're finally getting something. I was

scared for you when you said you couldn't take ATD's at all. Try to calm

down, if you have a Higher Power, turn all your fears over to It. The more

focused you are in your worry, the greater thr possibility of a

self-fulfilling prophecy happening. Peace and Light,

' In FL

Dawn's update - taking ATD again.

> 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.

>

> _________________________________________________________________________

> Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com.

>

> Share information about yourself, create your own public profile at

> http://profiles.msn.com.

>

November 15, 2000

Elaine, you a such a blessing!

Re: Dawn's update - taking ATD again.

Dawn,

They usually pretreat before surgery with iodine to reduce the vascularity.

My cousin was on it for 7 days before her surgery. Iodine fixes the tissue.

Is there another endo you can see?

November 16, 2000

Dawn Rose, I feel for you. How very hard you are fighting. Life seems to be

kicking you right now. But keep the faith. The endo DID let you try the

cabimazole again. Sounds like at least you are being heard. And that helps so

much. And obviously you're a good, effective fighter. And you will need to be.

I took the 'easy way' out. I took the RAI although I was frightened of it with

the attitude that I was more frightened of the thyroid disease. At this point

(9 months post RAI) I am taking propranalol, synthroid, anti-anxiety meds. I

have gained 35 lbs (most of which while hyper). Since I broke down and agreed

to take the anti anxiety meds, the internalist agreed to adjust my thyroid

meds. All is not magic no matter which choice you make. It's a lousy disease,

and certainly not always easily regulated. As a side effect of the anti anxiety

meds I am now depressed. Will stop the meds pretty soon I think. I have been

tested for almost anything you can think of because my symptoms presist. Who

knows - there's a possibility my thyroid is trying to stage a come back.

As for my eyes, I noticed lid lag four years ago so I don't think I can credit

the RAI with that. And they seem to come and go. Nothing I can't cope with

except frustration. And boy there's lots of that.

dawn rose wrote:

> 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.

>

> _________________________________________________________________________

> Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com.

>

> Share information about yourself, create your own public profile at

> http://profiles.msn.com.

>

November 16, 2000

Hi , you're so right about the self-fulfilling prophecy. Sometimes

it's easier to focus on the negative when we're not feeling well. Whether

we feel well or not we need to tell ourselves our health will improve, it

just takes time. We need to learn to be more positive and lean on this

bulletin board for support. I hope you're taking care of yourself, Mona