RAI

[Guest guest]

Jody, about your sensible endo. What part of the country do you live in

again?

Fay Young

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[Guest guest]

, you are right on. If GD is detected earl;y, treatment via the immune

system like with alt meds or some of the new cytokine inhibitors is feasible.

Addressing the immune system is the goal with stress reduction, etc. Also,

ATD's affect the immune system.

The problem is, though, that so many people aren't diagnosed until symptoms

are severe. Then, it really is necessary to get thyroid hormone levels down

quickly. At least, more and more docs are using ATD's, although often it's

because of the patient's own initiative. With more awareness of the true

effects of RAI, more patients will be demanding to stay on ATD's.

[Guest guest]

Hi Elaine-

Me neither (optimal dose). It seems like if I get one thing right than the

other stuff gets worse.

I give up. I've been working on this for a year and a half and it's not

getting any better. What I'd really like is a new thyroid gland.

Take care,

Re: RAI

> Hi ,

> I'm not sure if I've seen much info on this other than some of the Broda

> info, but I am in the same boat your are as I've likely told you

> before. Since RAI, I'm a shadow of my former self.

> If I want to wake up in the morning I have to take extra Armour at night.

> Otherwise, I could literally sleep til noon and often I do. I get so bad

in

> the winter I can't take showers because of my aversion to cold. And as

soon

> as I begin drinking hot tea I'm overheated. And the car heater makes me

> sick. I'm either cold or hot and never feel quite right temperature wise.

> Today while I was out playing lumberjack with my husband, I realized that

the

> extra thyroid was making me breathless so I'm probably messing things up.

I

> even found myself wondering if all this hypo hassle is going to affect my

> life span. I have read studies indicating that some people who take T4

alone

> would have to take toxic amounts in order for their bodies to convert

> sufficient T3. Obviously, T4 alone isn't the key. I'm much better with

Armour

> but can't say I've actually come up with an optimal dose.

>

>

> -------------------------------------

> The Graves' list is intended for informational purposes only and is not

intended to replace expert medical care.

> Please consult your doctor before changing or trying new treatments.

> ----------------------------------------

>

>

[Guest guest]

Oops! Sorry everybody.

I meant to send that last message to Elaine privately.

[Guest guest]

,

Do they transplant them? We could all line up for new one and see if that

would work. The scarey thing is, at least around here is when you talk to

people it is beginning to seem that between 1-3/1-5 have a thyroid problem

of some sort. I wonder when someone will wake up to the fact of how

important ones thyroid is, how much it actually affects, the immune system

at a whole and decide 'hey maybe we better get to work on this now before we

really have problems'. It is like thyroid disease is becoming epidemic

proportions.

And just so you know...if I can't give up, neither can you! Maybe one day

we will all make a difference somehow in someone elses life, if not our

own...even if it is so damn frustrating at times trying to live with it.

Take care and *HUGZ* for you.

Jody

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[Guest guest]

,

Do they transplant them? We could all line up for new one and see if that

would work. The scarey thing is, at least around here is when you talk to

people it is beginning to seem that between 1-3/1-5 have a thyroid problem

of some sort. I wonder when someone will wake up to the fact of how

important ones thyroid is, how much it actually affects, the immune system

at a whole and decide 'hey maybe we better get to work on this now before we

really have problems'. It is like thyroid disease is becoming epidemic

proportions.

And just so you know...if I can't give up, neither can you! Maybe one day

we will all make a difference somehow in someone elses life, if not our

own...even if it is so damn frustrating at times trying to live with it.

Take care and *HUGZ* for you.

Jody

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[Guest guest]

,

Would an immunologist be of any use to those of us who have had RAI? How

come with a sub total you are still taking ATD's? Just curious, thought

surgery or RAI made it moot to take them.

Jody

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[Guest guest]

,

Would an immunologist be of any use to those of us who have had RAI? How

come with a sub total you are still taking ATD's? Just curious, thought

surgery or RAI made it moot to take them.

Jody

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[Guest guest]

Well Gang some of us have had RAI. They are in a bit of a pickle. Some

of us have had

subtotal bilateral thyroidectomy (me) And some of us are on ATD's (me

too). We keep on going after that thyroid. We seem to have realized that

this is not a disease of the thyroid but of the immune system and

therefore some of the crap we have to put up with might not be caused by

the thyroid. Has anyone been near an immunologist?

[Guest guest]

Hi Jody-

No, they don't transplant them. They haven't thought there's a problem with

thyroid replacement. My guess is that it's so expensive (risks too) to

consider transplants that it's prohibitive when compared to thyroid

replacement and people don't die from this. If they do have problems

they're nonspecific (which makes sense since all cells need thyroid

hormone).

I was kinda hoping that there might be some hope someday in stem cell

research (stem cells can develop into any cell) but it wouldn't be for a

very long time. That's very expensive too. And they probably wouldn't be

willing to even try unless they can clear up the autoimmune aspects of this

disease (but they'll be working real hard to help MS patients which would

benefit us).

Who knows though. I'd be happy to be wrong about the lack of impetus to

really do anything for us and we have all been getting together and

comparing notes. There also does seem to be a trend of patients not being

prescribed RAI immediately anymore. So maybe if enough of us aren't doing

well, they'll do something about it.

Take care,

> ,

> Do they transplant them? We could all line up for new one and see if that

> would work. The scarey thing is, at least around here is when you talk to

> people it is beginning to seem that between 1-3/1-5 have a thyroid problem

> of some sort. I wonder when someone will wake up to the fact of how

> important ones thyroid is, how much it actually affects, the immune system

> at a whole and decide 'hey maybe we better get to work on this now before

we

> really have problems'. It is like thyroid disease is becoming epidemic

> proportions.

>

> And just so you know...if I can't give up, neither can you! Maybe one day

> we will all make a difference somehow in someone elses life, if not our

> own...even if it is so damn frustrating at times trying to live with it.

> Take care and *HUGZ* for you.

> Jody

[Guest guest]

> Well Gang some of us have had RAI. They are in a bit of a pickle.

Some

> of us have had

> subtotal bilateral thyroidectomy (me) And some of us are on ATD's

(me

> too). We keep on going after that thyroid. We seem to have realized

that

> this is not a disease of the thyroid but of the immune system and

> therefore some of the crap we have to put up with might not be

caused by

> the thyroid. Has anyone been near an immunologist?

Never . I've never been at an imunologist's office.

First big mistake, tho' ... I guess he would address me to an

endo

A.

[Guest guest]

> Well Gang some of us have had RAI. They are in a bit of a pickle.

Some

> of us have had

> subtotal bilateral thyroidectomy (me) And some of us are on ATD's

(me

> too). We keep on going after that thyroid. We seem to have realized

that

> this is not a disease of the thyroid but of the immune system and

> therefore some of the crap we have to put up with might not be

caused by

> the thyroid. Has anyone been near an immunologist?

Never . I've never been at an imunologist's office.

First big mistake, tho' ... I guess he would address me to an

endo

A.

[Guest guest]

Hi ,

I was half being vacisious about the transplant, I'm not sure I would get in

line for one considering all of the meds one has to take to prevent

rejection. The stem cell is fascinating, aren't they doing that for

diabetes also with the pancreas or am I remembering wrong?

I don't think they will truely do anything for people with thyroid

disease/autoimmune diseases until it starts affecting the way big names

(actors, politicians or spouses of them) really start having major problems

and get no where with the current mode of treatment. Look at Gail Devers,

the Olympic Gold Metalist in track and hurdles. She almost died from GD

because she ignored symptoms until it was almost to late...but once

diagnosed, she had one heck of a team to get her back to medaling in 2 other

Olympics (Barcelona and Atlanta), an injury prevented her from running this

year, but she was suppose to. My sister and son met her at the Nike Classic

in Bloomington, In. this past May where my son was running...she acts like

GD is the easiest thing in the world to *cure*. I was ticked to say the

least, either she was very lucky in the treatment that her name and fame and

money could buy or she is lying. Trying to get my sister to understand this

now is impossible. <sigh>

Enough for now, I'll talk to you later.

Jody

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[Guest guest]

Hi Jody-

I looked up the article again a while ago and, yes, it was stem cells. If I

remember right, the cells migrated to the pancreas and differentiated there.

It took them an incredible number of trials to get it right though but once

they do, the success rate seems to be high so far. It's getting the cells

to successfully live there that's the problem.

It seems like there are a lot of people that do OK post-RAI. They probably

have some problems, but there seems to be varying degrees of severity.

Plus, I don't think many of them attribute their problems to hypothyroidism

if they have them. For years, I thought most of mine were autoimmune in

nature (doctors thought so too). Some of them probably are, but I was

astonished when so many of them cleared up when I took T3. It also probably

depends on if the patient has any thyroid function of their own left or not.

I think that all the variables involved make it an almost impossible disease

to treat adequately. That's why I don't go in for adding more if you don't

have to. We all have autoimmune disease, some are hyper and some are hypo,

we all probably have different setpoints for what is normal for us, some of

us are probably more sensitive than others, and then we add RAI into the mix

which hasn't been well enough researched, in my opinion. That's why I wish

they'd get to the real problem of treating the autoimmune disease instead of

the thyroid.

Unless they figure this all out (which is an awful lot to ask for), I will

always have GD, have no thyroid function at all, and worry a bit about the

long-term effects of RAI. If someone would have asked me how I felt in 1989

(2 years post-RAI), I was a little tired but not bad. It's just gotten

progressively worse over the years. And I have to admit, I think it's more

a hypothyroidism problem than anything else for me.

Take care,

> Hi ,

> I was half being vacisious about the transplant, I'm not sure I would get

in

> line for one considering all of the meds one has to take to prevent

> rejection. The stem cell is fascinating, aren't they doing that for

> diabetes also with the pancreas or am I remembering wrong?

>

> I don't think they will truely do anything for people with thyroid

> disease/autoimmune diseases until it starts affecting the way big names

> (actors, politicians or spouses of them) really start having major

problems

> and get no where with the current mode of treatment. Look at Gail Devers,

> the Olympic Gold Metalist in track and hurdles. She almost died from GD

> because she ignored symptoms until it was almost to late...but once

> diagnosed, she had one heck of a team to get her back to medaling in 2

other

> Olympics (Barcelona and Atlanta), an injury prevented her from running

this

> year, but she was suppose to. My sister and son met her at the Nike

Classic

> in Bloomington, In. this past May where my son was running...she acts like

> GD is the easiest thing in the world to *cure*. I was ticked to say the

> least, either she was very lucky in the treatment that her name and fame

and

> money could buy or she is lying. Trying to get my sister to understand

this

> now is impossible. <sigh>

> Enough for now, I'll talk to you later.

> Jody

>

[Guest guest]

I had the RAI a few weeks ago. I am sorry I did it. I read a bit before hand,

mainly about how it is administered, how long until I would see results, etc.

I really didn't research much. I was in bad shape and just wanted it over

with. It is hard to tell a doctor that you will not do what he/she is telling

you to do, at least it is for most of us. I wasn't thinking straight at the

time, I was a physical and emotional wreck. Once it is done you cannot undo

it, it is a done deal. I suppose with the bad blood reactions I have gotten

from the PTU,( the pin point red dots on feet and shins) there is a good

chance the same thing will happen from the Tapazole. From what I read those

side effects are the same for both drugs. I probably won't be able to stay on

these ATDs and would have ended up having to do the RAI anyway. The spots are

still on my feet and shins but I have only been off the PTU and on Tapizile

for three days. If they get worse I will have to stop the Tapazole too. What

I am trying to say is for anyone not having RAI yet please don't jump on it

like I did. When we feel so bad we will grasp at anything to feel like a

normal person again. For example I begged my doctor the other day to remove

my thyroid. It was one of those days when the symptoms were so bad and I felt

I couldn't go through another day feeling like this. Thank God he just smiled

at me and said it can't be done now. I didin't even ask him why it couldn't

be done. And RAI doesn't work overnight, it has been a month and I feel worse

then before I had it done. They told me the drugs were a long drawn out way

to treat it but so is RAI. They said what they hope for is just enough of the

thyroid to die off to make it euthroid but then they said that would be

almost like a miracle.

As usual I am rambling, sorry

Laurie