Brand Newbie, Toxic Multinodulat Goiter Question

July 1, 2004

Hi, all. I just signed up with this group and am looking forward to

learning more about my thyroid disease from all of you. I have been

diagnosed with toxic multinodular goiter and after having RAI

uptake/scan, bloodwork and ultrasound, the endocrinologist I saw

recently is recommending RAI-131 ablation. I tested negative for

Grave's. I am really on the fence because, while I want my

hyperthyroidism gone, I am also concerned about the effects of this

therapy (i.e resulting hypothyroidism, long-term effects from

radiation, etc.). Can anyone give me some good advice on deciding

whether or not to have this done? From what I am being told, my

options are either I-131 ablation or surgery, as these goiters do not

just resolve themselves. Are there any options I'm not being told

about? My most recent bloodwork shows Free T3 at 4.8, TSH at 0.26

and anti-thyroid antibodies at 48.0. Thanks in advance. I'm happy

to have found this group!

July 3, 2004

Hi, . Thanks for your reply. The endocrinologist did say that

surgery is an option, but she said the RAI is less invasive

(obviously). I first found out about my thyroid issues on April 6

when I was admitted to the ER thinking I was having a heart attack

(chest pain, numb left arm, etc.) After the CT scan the doc said I

had an enlarged thyroid, and the pieces started to fall into place.

My main concern at this point with the hyperthyroidism (which is not

extreme, but I also don't want to wait until it is very bad) is my BP

which was 138/98 at the last reading. I have always had extremely

low BP, and the cardiologist is worried about this as well. I also

worry about surgery because of the potential complications there. I

have a 20 month old daughter and a five year old son, and the RAI

scares me largely because of their exposure to the radiation, even

after I'm away from them for a few days. I guess I want to know if I

am overreacting by being worried. As far as my T4 goes, the only

measurements I have are the T4 (Thyroxine), Serum, which was 11.1

(range is 4.5-12.5), plus the TSH w/Reflex to T4, which was 0.42

(range 0.40-5.20). Should I just hold off on everything, or is there

no point? I am planning to get another opinion this week from my OB,

but I would prefer feedback from other thyroid patients who know what

they're talking about. Thanks again, everyone.

> That T3 is a little overrange, but it's barely over the top. I

deliberately

> keep mine over the top because I feel better with it that way, and

I don't

> think that it is hyper for ME. However, if your toxic nodules are

going to

> continue to put out more of their OWN thyroid hormone, something

definitely

> has to give. Since all this is not evidently going to shrink on

it's own,

> my opinion is to opt for the surgery instead, since it has to be

killed, one

> way or the other. You are right to be concerned about the RAI.

Did he give

> you a choice of the surgery? How long do you think that you've

been like

> this? Doesn't it seem like you probably have Hashi's? Because of

the

> antibodies. What was your Free T4?

>

> Brand Newbie, Toxic

Multinodulat Goiter

> Question

>

> > Hi, all. I just signed up with this group and am looking forward

to

> > learning more about my thyroid disease from all of you. I have

been

> > diagnosed with toxic multinodular goiter and after having RAI

> > uptake/scan, bloodwork and ultrasound, the endocrinologist I saw

> > recently is recommending RAI-131 ablation. I tested negative for

> > Grave's. I am really on the fence because, while I want my

> > hyperthyroidism gone, I am also concerned about the effects of

this

> > therapy (i.e resulting hypothyroidism, long-term effects from

> > radiation, etc.). Can anyone give me some good advice on deciding

> > whether or not to have this done? From what I am being told, my

> > options are either I-131 ablation or surgery, as these goiters do

not

> > just resolve themselves. Are there any options I'm not being told

> > about? My most recent bloodwork shows Free T3 at 4.8, TSH at 0.26

> > and anti-thyroid antibodies at 48.0. Thanks in advance. I'm

happy

> > to have found this group!

July 4, 2004

Really, I still don't quite understand all the "step order" of what is done, step by step, when there are a gazillion nodules present. I was thinking that, most certainly, when one is producing it's own hormone, the doctor (with ANY med) could not stop that process, and that it could be very dangerous to leave the thyroid in there, in this case. It makes sense to me, that if a nodule (for instance) sits in there producing tons of it's own T3, and there are many nodules, that person is more likely to have complications, the longer it's left in there. You know, that has passed through my mind on a couple of occasions, about the RAI, as in "If it's burned, does it disintegrate and absorb, with the body flushing it out, or does it just sit there, all burned to a crisp forever. I'm not trying to scare anyone, but, being as I haven't been through this one (and don't want to), it is hard for me to get a picture of what happens to it, in my mind. It still seems so weird to me that someone would have their neck nuked and then the doctor tell them that that's the safe thing to do, rather than do a clean surgical cut, and I know that's got to be scary too, but I think that I would rather have that, if there were no other options to keep my health. Sometimes, there ARE no other options, when you've been going through dangerous symptoms for a solid yr, heart going into arrhythmias, etc......if the hyperthyroid ever does get that serious. With a ton of nodules, though, I just can't see keeping it in there. That's just my opinion, though. I do think, though, that in a case where thyroid storm has been ignored for so long, that it has turned into an emergency situation, and that person CAN'T have a surgery when they come in on emergency, then the only option to save their lives, possibly, is going to be RAI. Otherwise, they die then.

Re: Brand Newbie, Toxic Multinodulat Goiter Question

I had lunch last week with my friend from Seattle. She has had thyroid cancer as well as auto-immune thyroiditis. She made one comment about RAI treatment that has stuck with me. She said that RAI kills the thyroid tissue, but that the dead tissue remains in your body and creates more auto-immune disorders. This was just her opinion, but it makes sense to me.

July 5, 2004

I've not had either of these procedures, but you never said whether or not

he gave you PTU to block the thyroid hormone or even a beta blocker? Seems

like he would have immediately done this.

Re: Brand Newbie, Toxic Multinodulat

Goiter Question

> Hi, . Thanks for your reply. The endocrinologist did say that

> surgery is an option, but she said the RAI is less invasive

> (obviously). I first found out about my thyroid issues on April 6

> when I was admitted to the ER thinking I was having a heart attack

> (chest pain, numb left arm, etc.) After the CT scan the doc said I

> had an enlarged thyroid, and the pieces started to fall into place.

> My main concern at this point with the hyperthyroidism (which is not

> extreme, but I also don't want to wait until it is very bad) is my BP

> which was 138/98 at the last reading. I have always had extremely

> low BP, and the cardiologist is worried about this as well. I also

> worry about surgery because of the potential complications there. I

> have a 20 month old daughter and a five year old son, and the RAI

> scares me largely because of their exposure to the radiation, even

> after I'm away from them for a few days. I guess I want to know if I

> am overreacting by being worried. As far as my T4 goes, the only

> measurements I have are the T4 (Thyroxine), Serum, which was 11.1

> (range is 4.5-12.5), plus the TSH w/Reflex to T4, which was 0.42

> (range 0.40-5.20). Should I just hold off on everything, or is there

> no point? I am planning to get another opinion this week from my OB,

> but I would prefer feedback from other thyroid patients who know what

> they're talking about. Thanks again, everyone.

>

> > That T3 is a little overrange, but it's barely over the top. I

> deliberately

> > keep mine over the top because I feel better with it that way, and

> I don't

> > think that it is hyper for ME. However, if your toxic nodules are

> going to

> > continue to put out more of their OWN thyroid hormone, something

> definitely

> > has to give. Since all this is not evidently going to shrink on

> it's own,

> > my opinion is to opt for the surgery instead, since it has to be

> killed, one

> > way or the other. You are right to be concerned about the RAI.

> Did he give

> > you a choice of the surgery? How long do you think that you've

> been like

> > this? Doesn't it seem like you probably have Hashi's? Because of

> the

> > antibodies. What was your Free T4?

> >

July 5, 2004

I'm not really sure on this, but a thought came to mind. Antibodies attack LIVE intruders, right? So if the thyroid tissue is dead, would it not be ignored?

Not sure.. just 'thinking out loud'

Topper ()

On Sat, 3 Jul 2004 21:20:27 -0700 (PDT) Jan writes:

I had lunch last week with my friend from Seattle. She has had thyroid cancer as well as auto-immune thyroiditis. She made one comment about RAI treatment that has stuck with me. She said that RAI kills the thyroid tissue, but that the dead tissue remains in your body and creates more auto-immune disorders. This was just her opinion, but it makes sense to me.

July 5, 2004

Nope. I haven't had any medication precribed.

> > > That T3 is a little overrange, but it's barely over the top. I

> > deliberately

> > > keep mine over the top because I feel better with it that way,

and

> > I don't

> > > think that it is hyper for ME. However, if your toxic nodules

are

> > going to

> > > continue to put out more of their OWN thyroid hormone, something

> > definitely

> > > has to give. Since all this is not evidently going to shrink on

> > it's own,

> > > my opinion is to opt for the surgery instead, since it has to be

> > killed, one

> > > way or the other. You are right to be concerned about the RAI.

> > Did he give

> > > you a choice of the surgery? How long do you think that you've

> > been like

> > > this? Doesn't it seem like you probably have Hashi's? Because

of

> > the

> > > antibodies. What was your Free T4?

> > >

July 6, 2004

Very good point... Even after a transplant they have to give the person anti-rejection drugs cause the body is just 'sure' that it doesn't belong there... maybe it's the same with a dead gland... makes you wonder.

But... now as my mind wanders.. even with surgery they can't get ALL of it, the technique isnt' there yet to allow for complete removal... so then the question becomes which would trigger the immune system more.. the small amount of remaining tissue OR dead tissue? AND if dead tissue is still a trigger, would the entire dead gland be more of a trigger than tissue left after surgery being killed off by RAI?

Now I'm curious...

.... I get that way sometimes...

Topper ()

On Mon, 5 Jul 2004 19:25:06 -0700 (PDT) Jan writes:

I would not think that "live" would be a requirement. There would have to be some kind of biochemical trigger.

"Dead" tissue might be the source of that trigger. Some folks have acquired auto-immune disease as a result of having a root canal. . . .speaking of punishments for spammers and bad endos. . . . .that is, the tooth is killed and left in place.

That some women get auto-immune disorders as a result of silicone breast implants would also suggest non-tissue as a trigger.

Some folks acquire auto-immune thyroid disease after an infection such as mononucleosis, measles, Epstein-Barr. Is it possible that the virus may have done damage to the thyroid gland, and the body creates antibodies like macrophages to consume and/or spirit away the necrotic tissue? This is pure speculation on my part.

I think the auto-immune response can be evoked by anything that does not belong there. I do not think dead tissue belongs in your neck.

If doctors know very little about thyroid disorders, they know even less about auto-immune disorders. . . .

July 6, 2004

We've discussed this for a day or two now.. and would you believe it just now hit me.... I had RAI... I had a gland that was twice normal size (genetic thing, won't go into detail here) and that whole dead bugger is all shriveled up and still in my neck... Hmmmmmm

I'll have to decide how I feel about that.. not that I could do anything about it... it's been there a LONG time alreay....

hmmmmmm

Topper ()

On Tue, 6 Jul 2004 19:06:26 -0500 " " writes:

Seems to me that autoantibodies would attack ANYthing that it deems necessary to get rid of. Wouldn't that certainly include dead tissue? In other words, it is an terrible thought that we would actually have dead tissues sitting in our body. I could see antibodies attacking this even more than live tissue. I haven't read this anywhere, just makes sense to me.

July 6, 2004

, this touches on something I have been wondering lately. Just

what did people with thyroid disease do before modern treatments were

available? Did they just live (or die) with the disease? My

grandfather had nodules removed in the 40's, and was apparently fine

after that, but I wonder what someone with, say, a toxic multinodular

goiter like mine did. Incidentally, I'm still scheduled to have RAI

this Thursday. I'm going to see my ear/nose/throat doc that morning,

just to go over my labs one more time and get a good second opinion.

It's a big step adn I am nervous, but it seems like I don't have any

options really, between this and surgery, and the hyper symptoms are

really starting to interfere with my life, especially the heart-

related ones (racing pulse, high BP, etc.) Thank you all again and

again for the feedback. It is excellent food for thought, and a

comfort, too.

.... Then there are all the other stuff we expose ourselves to in a

lifetime that former generations never did. It's no wonder we have

all these antibodies in us.

>

> Re: Brand Newbie, Toxic

Multinodulat Goiter Question

>

> I would not think that " live " would be a requirement. There would

have to be some kind of biochemical trigger.

>

> " Dead " tissue might be the source of that trigger. Some folks

have acquired auto-immune disease as a result of having a root

canal. . . .speaking of punishments for spammers and bad

endos. . . . .that is, the tooth is killed and left in place.

>

> That some women get auto-immune disorders as a result of silicone

breast implants would also suggest non-tissue as a trigger.

>

> Some folks acquire auto-immune thyroid disease after an infection

such as mononucleosis, measles, Epstein-Barr. Is it possible that the

virus may have done damage to the thyroid gland, and the body creates

antibodies like macrophages to consume and/or spirit away the

necrotic tissue? This is pure speculation on my part.

>

> I think the auto-immune response can be evoked by anything that

does not belong there. I do not think dead tissue belongs in your

neck.

>

> If doctors know very little about thyroid disorders, they know

even less about auto-immune disorders. . . .

July 7, 2004

Well, Topper, you really didn't have much choice at the time. In your case, with thyroid storm going on, they couldn't do the surgery, so they really had no choice. When they really had the choice the @#$#H^ didn't do anything. You know, think about me and people like me, who never really knew (except for 6 months after diagnosis) what their thyroids looked like on a scan (we all know about the money thing). The ultrasound and scan both were done within this time period, but that was 11 yrs ago. There's no telling what the thing looks like at this point. Who knows, it could have little nodules sitting all in it, and I don't really know, do I, hehe!! I'm laughing, but if there is, and they grow, this is when I will probably most definitely know.

Re: Brand Newbie, Toxic Multinodulat Goiter Question

We've discussed this for a day or two now.. and would you believe it just now hit me.... I had RAI... I had a gland that was twice normal size (genetic thing, won't go into detail here) and that whole dead bugger is all shriveled up and still in my neck... Hmmmmmm

I'll have to decide how I feel about that.. not that I could do anything about it... it's been there a LONG time alreay....

hmmmmmm

Topper ()

July 7, 2004

Really, I haven't researched any type of accounting of people with thyroid

disease, way back before the advent of Armour Thyroid. This would probably

make interesting research, come to think of it. I think that

Ashwell did bring up a tiny bit of history on one of the former Queens

somewhere, and a couple of the pictures did look like she had a goiter. I

think this will give me something else to research, lol!

Re: Brand Newbie, Toxic Multinodulat

Goiter Question

> , this touches on something I have been wondering lately. Just

> what did people with thyroid disease do before modern treatments were

> available? Did they just live (or die) with the disease? My

> grandfather had nodules removed in the 40's, and was apparently fine

> after that, but I wonder what someone with, say, a toxic multinodular

> goiter like mine did. Incidentally, I'm still scheduled to have RAI

> this Thursday. I'm going to see my ear/nose/throat doc that morning,

> just to go over my labs one more time and get a good second opinion.

> It's a big step adn I am nervous, but it seems like I don't have any

> options really, between this and surgery, and the hyper symptoms are

> really starting to interfere with my life, especially the heart-

> related ones (racing pulse, high BP, etc.) Thank you all again and

> again for the feedback. It is excellent food for thought, and a

> comfort, too.

July 7, 2004

According to my rheumatologist, people who had thyroid disease

before they knew how to treat it ended up in sanitariums -- lost

their minds and eventually died.

Jo

> ... Then there are all the other stuff we expose ourselves to in a

> lifetime that former generations never did. It's no wonder we

have

> all these antibodies in us.

> >

> > Re: Brand Newbie, Toxic

> Multinodulat Goiter Question

> >

> > I would not think that " live " would be a requirement. There

would

> have to be some kind of biochemical trigger.

> >

> > " Dead " tissue might be the source of that trigger. Some folks

> have acquired auto-immune disease as a result of having a root

> canal. . . .speaking of punishments for spammers and bad

> endos. . . . .that is, the tooth is killed and left in place.

> >

> > That some women get auto-immune disorders as a result of

silicone

> breast implants would also suggest non-tissue as a trigger.

> >

> > Some folks acquire auto-immune thyroid disease after an

infection

> such as mononucleosis, measles, Epstein-Barr. Is it possible that

the

> virus may have done damage to the thyroid gland, and the body

creates

> antibodies like macrophages to consume and/or spirit away the

> necrotic tissue? This is pure speculation on my part.

> >

> > I think the auto-immune response can be evoked by anything

that

> does not belong there. I do not think dead tissue belongs in your

> neck.

> >

> > If doctors know very little about thyroid disorders, they know

> even less about auto-immune disorders. . . .

July 7, 2004

Wow, Jo. That is scary. Thanks for the interesting tidbit.

> > ... Then there are all the other stuff we expose ourselves to in

a

> > lifetime that former generations never did. It's no wonder we

> have

> > all these antibodies in us.

> > >

> > > Re: Brand Newbie, Toxic

> > Multinodulat Goiter Question

> > >

> > > I would not think that " live " would be a requirement. There

> would

> > have to be some kind of biochemical trigger.

> > >

> > > " Dead " tissue might be the source of that trigger. Some folks

> > have acquired auto-immune disease as a result of having a root

> > canal. . . .speaking of punishments for spammers and bad

> > endos. . . . .that is, the tooth is killed and left in place.

> > >

> > > That some women get auto-immune disorders as a result of

> silicone

> > breast implants would also suggest non-tissue as a trigger.

> > >

> > > Some folks acquire auto-immune thyroid disease after an

> infection

> > such as mononucleosis, measles, Epstein-Barr. Is it possible that

> the

> > virus may have done damage to the thyroid gland, and the body

> creates

> > antibodies like macrophages to consume and/or spirit away the

> > necrotic tissue? This is pure speculation on my part.

> > >

> > > I think the auto-immune response can be evoked by anything

> that

> > does not belong there. I do not think dead tissue belongs in your

> > neck.

> > >

> > > If doctors know very little about thyroid disorders, they

know

> > even less about auto-immune disorders. . . .

July 7, 2004

Here is the link for the Thyroid History site:

Thyroid History Thyroid Articles/thyroid-related medical research http://www.thyroidhistory.net/thyroidhistory.net/index.asp

wrote:

Really, I haven't researched any type of accounting of people with thyroiddisease, way back before the advent of Armour Thyroid. This would probablymake interesting research, come to think of it. I think that Ashwell did bring up a tiny bit of history on one of the former Queenssomewhere, and a couple of the pictures did look like she had a goiter. Ithink this will give me something else to research, lol!__________________________________________________

July 7, 2004

Yeah, I was told that when I was still way out of control and

feeling really bad, so it didn't exactly cheer me up... Ha!

Jo

> > > ... Then there are all the other stuff we expose ourselves to

in

> a

> > > lifetime that former generations never did. It's no wonder we

> > have

> > > all these antibodies in us.

> > > >

> > > > Re: Brand Newbie,

Toxic

> > > Multinodulat Goiter Question

> > > >

> > > > I would not think that " live " would be a requirement.

There

> > would

> > > have to be some kind of biochemical trigger.

> > > >

> > > > " Dead " tissue might be the source of that trigger. Some

folks

> > > have acquired auto-immune disease as a result of having a root

> > > canal. . . .speaking of punishments for spammers and bad

> > > endos. . . . .that is, the tooth is killed and left in place.

> > > >

> > > > That some women get auto-immune disorders as a result of

> > silicone

> > > breast implants would also suggest non-tissue as a trigger.

> > > >

> > > > Some folks acquire auto-immune thyroid disease after an

> > infection

> > > such as mononucleosis, measles, Epstein-Barr. Is it possible

that

> > the

> > > virus may have done damage to the thyroid gland, and the body

> > creates

> > > antibodies like macrophages to consume and/or spirit away the

> > > necrotic tissue? This is pure speculation on my part.

> > > >

> > > > I think the auto-immune response can be evoked by anything

> > that

> > > does not belong there. I do not think dead tissue belongs in

your

> > > neck.

> > > >

> > > > If doctors know very little about thyroid disorders, they

> know

> > > even less about auto-immune disorders. . . .

July 8, 2004

Thyroid hormone runs virtually every single function in the human body.

Without it, we die, hands down, no questions asked. And this is also

probably why so many people are being committed to mental institutions or

going in and out on an outpatient basis today. There are some psychiatrists

who do treat with T3. That should certainly tell us something.

Re: Brand Newbie, Toxic Multinodulat

Goiter Question

> Wow, Jo. That is scary. Thanks for the interesting tidbit.

>

> > According to my rheumatologist, people who had thyroid disease

> > before they knew how to treat it ended up in sanitariums -- lost

> > their minds and eventually died.

> >

> > Jo

July 8, 2004

I read somewhere that natives somewhere still remove the thyroid glands of some kind of animal and eat them whole and raw. At the time, I was looking at a link on pica, and it was giving some of the habits of different tribes in Africa, from the past to now. Modern society might think they're backward, but I'm thinking that they know exactly how to treat for all kinds of diseases. The eating of clay is said to be iron craving. Evidently they knew/know all of what is in the soil. The one drawback about this---well, three----is worms, the taste, and other poisonous substances in the soil. Who knows, though, their soil is also probably purer than this God forsaken soil here in the Westernized countries.

Re: Re: Brand Newbie, Toxic Multinodulat Goiter Question

I don't have the link handy, but there is a website called "Thyroid History." It has all kinds of interesting stuff in it. But what sticks in my mind is a description of the treatment for myxedema. Once a week, you take two sheep thyroids and sautee them, then you eat them with currant jelly. . . .

July 8, 2004

For some its such a cruddy way to go.... you go into a coma.. just fall

asleep and never wake up.

All that time I was without meds, as my heart rate kept dropping lower

and lower, as my breathing slowed... and then I would sometimes realize

that I wasn't breathing... it got pretty scary... for a while, I started

wearing clothes to bed... so that if I didn't wake up they wouldn't be

finding me nude (I sleep in my birthday suit).

Even so.. it was less scary then being in thyroid storm, not hyper...

being in storm... your body eats itself... Your brain never shuts off.

You can't even sleep. And you literally do ten things at once.. your

brain not only keeps track of everything, your body does too!

Everything is accelerated... I could be dumping the coin of a bill

changer and one or two might drop to the floor.. I could tell you the

denomination and where they rolled to... Just all kinds of weird stuff

like that... Reading a book while driving, it would be on the seat next

to me... when I'd get stuck in traffic or at a long light I'd start

reading, and then put it down when I could get moving again. And I still

followed the book, not losing the story line even though sometimes I read

only a page or two at a time. Reading a book while watching TV. Oh.. and

with racing mind.. the inventions I dreamed up... later, when I wasn't

working and had time to work on that stuff I did... That's how I built my

solar greenhouse. I got the lumber for free and had the drawing/design

made and was ready to start cutting the lumber in two days. I'd already

studied it all and knew exactly what I wanted.. just needed the lumber

and then I could draw it based on my location and the material

available... I'm in Minnesota... not only didn't heat that greenhouse but

used the excess heat that it produced to supplement the heat for my

home.. dropped my heating bills by 30%. You can read about it on my

personal web site, if you're bored!!! hehehehehehe

Which I could still do that... I'd be a millionaire!!!! Cause now I know

what to do with that kind of multi-tasking!

Topper ()

http://toppertwo.tripod.com/greenhouse.htm

On Thu, 8 Jul 2004 12:45:10 -0500 " " writes:

> Thyroid hormone runs virtually every single function in the human

> body.

> Without it, we die, hands down, no questions asked. And this is

> also

> probably why so many people are being committed to mental

> institutions or

> going in and out on an outpatient basis today. There are some

> psychiatrists

> who do treat with T3. That should certainly tell us something.

>

July 8, 2004

If we could just tap into what our bodies tell us.. cravings for certain foods are often calls for replacement of missing nutrients... and no, I'm not talking about midnight Dorritos or M & M attacks! hehehehehe

Topper ()

On Thu, 8 Jul 2004 12:56:36 -0500 " " writes:

I read somewhere that natives somewhere still remove the thyroid glands of some kind of animal and eat them whole and raw. At the time, I was looking at a link on pica, and it was giving some of the habits of different tribes in Africa, from the past to now. Modern society might think they're backward, but I'm thinking that they know exactly how to treat for all kinds of diseases. The eating of clay is said to be iron craving. Evidently they knew/know all of what is in the soil. The one drawback about this---well, three----is worms, the taste, and other poisonous substances in the soil. Who knows, though, their soil is also probably purer than this God forsaken soil here in the Westernized countries.

July 8, 2004

That is so true about cravings.I have had a craving for so long for cheese- particularly parmesan.With input from here and OCTDM, we had narrowed it down to my need for calcium, salt, or protein.After more research, we discovered that the parmesan is heavy with tryptophan(a building block for thyroid hormones).While I was in the hospital, I was put on armour thyroid.That helped me to not have that craving anymore.

The Silent Group Co-owner(and so Proud of the group!)

ThyroFeisty(Feisty)www.thyrophoenix.com

Re: Re: Brand Newbie, Toxic Multinodulat Goiter Question

If we could just tap into what our bodies tell us.. cravings for certain foods are often calls for replacement of missing nutrients... and no, I'm not talking about midnight Dorritos or M & M attacks! hehehehehe

Topper ()

July 9, 2004

Now I'm curious... what happens when you have a total thyrodectomy,

and no RAI to kill off any possible remaining tissue?

Cathryn

> Very good point... Even after a transplant they have to give the

person

> anti-rejection drugs cause the body is just 'sure' that it doesn't

belong

> there... maybe it's the same with a dead gland... makes you wonder.

>

> But... now as my mind wanders.. even with surgery they can't get

ALL of

> it, the technique isnt' there yet to allow for complete removal...

so

> then the question becomes which would trigger the immune system

more..

> the small amount of remaining tissue OR dead tissue? AND if dead

tissue

> is still a trigger, would the entire dead gland be more of a

trigger than

> tissue left after surgery being killed off by RAI?

>

> Now I'm curious...

>

> ... I get that way sometimes...

>

> Topper ()

>

July 9, 2004

The remaining tissue continues to function. There may not be much of it..

it depends on the skill of the surgeon. The tissue is very fragile and

difficult to remove intact, that is the same reason that they've not even

tried thyroid transplants yet... and, I think too that it has something

to do with the immune system. With the thyroid susceptible to attacks by

the immune system anyway.. would the thyroid that is transplanted be safe

in the new body?

Makes you wonder. See, with no thyroid, I try to keep up on new stuff..

to see what they are doing.. I honestly don't expect it to be perfected

in my life time.. and even if it was I'm sure it would be VERY

pricey.....

Anyway.. the original question... the remaining tissue is still a

potential instigator for continued immune issues.. So if you have Hashi's

you could still have swings, but much less pronounced. With Graves..

that's a whole lot different... Someone jump in here if the have a better

understanding. Mine is that if the thyroid is nuked and completely

gone... the Grave's antibodies will launch their attack elsewhere...

often the eyes... So you need to deal with the Grave's before you start

messing with the thyroid itself.

I just have such mixed feelings. On one hand I can understand the

advantage of just getting rid of the malfunctioning thyroid.. but on the

other hand.. if you are left without a working gland, as I am, and then

get a bunch of dorky morons (bad docs) that run you right down into the

ground with improper testing and dosing.. your life will end up being

like (recycled dog food)... Each individual just has to make the decision

that is best for them.

I know.. I'm running this to tears.. the reason that and I started

this group.. and the other.. and now the web site.... is to allow more

folks to be aware that there is more involved to thyroid diagnosis,

treatment and care then the doc saying that you're in normal range and

sending you away... or saying that you aren't bad enough to bother with

medicating... or taking drastic steps, like surgery or RAI, and saying

that you'll just take one little pill everyday and you'll be just like

new.

For some, that all works just fine.. but there a SO MANY of us that need

to be more careful about ranges and meds and types of meds and dosing

..... that we can't just blindly accept what is handed out on preprinted

sheets and start off on the yellow brick road...

Learn as much as you can about everything that remotely pertains to you.

If you don't understand ask questions.. that's why we're all here.. to

help each other by sharing what we've learned, and experienced, with

others... we all come out ahead that way.. I learn something everyday

from you guys...

Topper () *the wordy pard*

On Fri, 09 Jul 2004 21:23:52 -0000 " Cathryn "

writes:

> Now I'm curious... what happens when you have a total thyrodectomy,

> and no RAI to kill off any possible remaining tissue?

> Cathryn

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