Re: Neclear Scan

June 5, 2003

Hi Prue,

I have not posted on this board before but have been one of those

people lurking out there:-))

I came out of remmission with Graves in September last year and it

took me two months before i was seen by an endo at Auckland

Hospital. Sorry I am not sure what part of the country you are in

but guess that it is not Auckland if you can be seen and have RAI so

quickly ;-)

I am not sure what your labs are but for the first 6 weeks I was on

30mg of Carbimazole and it took a good month before I started to

feel any better.

You do not have to have RAI if you don't want it. RAI was

recommended to me by the first Endo I saw. The reason he gave me was

that because I had mild TED RAI would fix it. That was far from the

truth. I waited until the day of my appointment before making a

decision. Went for my appointment and saw a different Endo. I told

him that I was having second thoughts and the reasons and he was

fine about it. Told me that if I was unsure then not to do it. Stay

on ATD's try for remission and if I changed my mind I could have the

RAI any time I like.

Don't let them pressure you. Take your time and make the decision

when you are comfortable with it. I know that it is tough at the

moment but once your levels come down you will be much more capable

of making an informed desicion. At the moment it is just so....

confusing and so.... hard to get your head around. But it will get

better.

I am sure that others will be able to comment on the scan and the

growths. I had a scan first time round out of ignorance and had no

problem but I know that others here are better imformed than I am on

both the scan and growths.

Take Care.

Deb.

> Hi everyone

>

> I have not posted much, because I am trying to absorb all the

> information that you kind people have been firing, both to me and

to

> others. However, I am now in a quandry. I saw a thyroid specialist

at

> the hospital for the first time yesterday. He was quite OK until

he

> told me that, subject to a nuclear scan on Monday (June 9), I was

> probably a candidate for RAI. I informed him that I have done a

lot

> of research on GD since my diagnosis and that I was not happy with

> RAI. He told me that he never had anybody die from RAI but had had

> deaths from both ATD's and surgery. I am finding the symptoms very

> hard to deal with, I have been on Carbimazole 10 mg twice daily

for a

> fortnight, and have had little relief. For the last 4 nights, my

> partner has got up and gone and slept in the back bedroom because

he

> doesn't like " sleeping next to a furnace that I can't turn off " !!

> I am a patient person and know that you can't expect great results

> overnight, but I am scared of the nuclear scan on Monday, very

scared

> of RAI which he has suggested for the week after, and need some

> advice from those of you who have been there, done that.

Apparently,

> after the ultrasound yesterday, he said that there are some

unusual

> growths on my thyroid and he expects to pick more up after the

scan.

> This is why he is promoting RAI, alternatively surgery. Help,

please!!

> By the way, thanks for the info on flaxseed oil, I started taking

> capsules last night, one three times a day. I think they are

1000mg.

> Is this the correct dose for a hyper hyper??

> Thanks in advance for your help.

> Regards Prue

June 5, 2003

Hi Prue....When I was very hyper my Endo started me on 40 mgs of

Tapazole...maybe your 20 is not enough?? I know others will chime in about

the dangers of RAI but personally, I have heard of too many nightmare

stories and will NEVER have RAI. Surgery would be my only choice if I had

any problems with the meds. I would like to know about anyone who has died

from the ATDs.....I have never heard this before. Best of luck while you

decide your treatment plan.

Ruthie

Neclear Scan

> Hi everyone

>

> I have not posted much, because I am trying to absorb all the

> information that you kind people have been firing, both to me and to

> others. However, I am now in a quandry. I saw a thyroid specialist at

> the hospital for the first time yesterday. He was quite OK until he

> told me that, subject to a nuclear scan on Monday (June 9), I was

> probably a candidate for RAI. I informed him that I have done a lot

> of research on GD since my diagnosis and that I was not happy with

> RAI. He told me that he never had anybody die from RAI but had had

> deaths from both ATD's and surgery. I am finding the symptoms very

> hard to deal with, I have been on Carbimazole 10 mg twice daily for a

> fortnight, and have had little relief. For the last 4 nights, my

> partner has got up and gone and slept in the back bedroom because he

> doesn't like " sleeping next to a furnace that I can't turn off " !!

> I am a patient person and know that you can't expect great results

> overnight, but I am scared of the nuclear scan on Monday, very scared

> of RAI which he has suggested for the week after, and need some

> advice from those of you who have been there, done that. Apparently,

> after the ultrasound yesterday, he said that there are some unusual

> growths on my thyroid and he expects to pick more up after the scan.

> This is why he is promoting RAI, alternatively surgery. Help, please!!

> By the way, thanks for the info on flaxseed oil, I started taking

> capsules last night, one three times a day. I think they are 1000mg.

> Is this the correct dose for a hyper hyper??

> Thanks in advance for your help.

> Regards Prue

>

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June 5, 2003

Hi Prue:

The first endo I saw pulled the same thing, she said that I had to

have the scan as a formality and then needed to get RAI as soon as

possible after my levels were brought down by ATDs. I asked her about

staying on ATDs, and she said I could do that but I'd just be back in

a year for the RAI. I changed doctors.

I think it is unethical and cruel that your doctor brought death into

the discussion. You can't work with someone that has already decided

that there's only one way. If you are worried about the scan, and

about RAI, don't do anything yet. I don't know if you've already run

labs on antibodies, if not, I would really consider that. I got

the thyroid uptake scan because I didn't know there were any options,

and it was really scary. The guy who gave me my radioactive iodine

capsule was wearing lead gloves, and I had to swallow what he was

holding! On the other hand, if there are anomalies in the size or

shape of your thyroid, there may be a case for further testing -

perhaps there is a less invasive test?

Two weeks may not be enough time for you to feel the effects of your

ATDs, and also, you may not be on the right dosage. Are you also on

some type of beta blocker? Sometimes that helps before the ATDs kick

in, although I am not sure if it helps with heat. I know it helps

with feeling wound up, heart thumping, breathlessness, anxiety, etc.,

it may be worth a try.

You are wise to question these steps, so many of us were rushed into

treatments we regretted later, because the doctors did not give us the

whole picture. However, there are doctors out there that are more

open, and the more you arm yourself with information, the more easily

you will see if a doctor is interested in helping you heal yourself,

or only in making his own opinion the right one. I went through 5

endos before I found the right one for me. A couple of endos I saw

were really more focused on treating diabetes, and didn't have that

many thyroid patients - does your doctor treat a large percentage of

Graves' patients?

I was on ATDs for 18 months and went into remission. I am very happy

about the choice I made, even though there were very rough times. At

least I gave myself a chance to come out with my thyroid intact, and

it is possible that I can remain free of thyroid medication for the

rest of my life - whereas if I had chosen RAI, I know that at best, I

would always have to manage my levels. If you are not in immediate

danger, think about taking the least invasive path, you can always

change your mind, but once you do RAI, your choices become very

limited.

Hang in there, put a fan next to your partner, and tell him he's

getting a taste of what women (not only Graves women) have to go

through at some time in their life! Too bad it's not winter, getting

really hot saved me on heating bills for sure! I'm just trying to

cheer you up, no offense. One time I got so hot that my glasses

fogged up! I used to feel like I was incinerating from the inside

out.

Take care, take it easy, you're doing great, and things will get

better.

> Hi everyone

>

> I have not posted much, because I am trying to absorb all the

> information that you kind people have been firing, both to me and to

> others.

June 6, 2003

Hi Prue-

Since this is a unreversible decision, tell the doctor that you want to see

the studies that support what he is saying about deaths for surgery and

ATDs. Even if mortality rates are higher than RAI, they can't be much

higher or no one would be given those options.

Since your doctor is talking about growths, maybe he's thinking about cancer

or the propensity for it. If that's the case, he would counsel

thyroidectomy and RAI. But he's not doing that so I think he doesn't

suspect thyroid cancer.

It's true that you don't generally die from RAI (although a very few might

from RAI induced thyroid storm). But there's such a thing as quality of

life. And sometimes you don't have it after RAI. What that's worth is

something to consider before you make this decision.

Take care,

dx & RAI 1987 (at age 24)