RAI

[Guest guest]

It certainly does run in families, but there is always a first person.

Also, many people previously were not diagnosed nor were they treated. My

maternal grandmother died when my mother was young. Now I am suspicious

about what that young grandmother died from. My sisters are hypo, I am

hyper, and my mother had a goiter that was never medically treated, but

disappeared when she self-medicated on kelp per the pharmacist's advice.

However, my first bout with Graves was in 1991 during my husband's fatal

illness and death. I went into remission and did not experience any

problems until late 1998 when I was experiencing severe financial distress

(primarily involving high individual health insurance premiums!). I am

inclined to believe the family inclination is there and that stress

exacerbates the problem.

Elaine

Researching Bohemian Surnames

S L E P I C K A and H R U S K A

RAI

>

>

> My price quote on RAI was for and overnight stay at the hospital,

> possibly more than one, and it included everything. Hereditary?! No

> one in my family has graves, my great aunt has hypothyroidism. How is

> it hereditary if no one in my family has it, that is what I never

> understood. My father is the oldest living relative in his family

> and knows all about the family medical history. When I questioned my

> endo about the hereditary part that know one was known to have it I

> was

> ignored. Anybody have and answer???

>

> Debbie R.

>

>

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

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

> 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]

Hi Barb

In my post dated April 8 " LONG to e " I wrote:

<<<<When RAI is chosen, and if you're having PTU make sure that you're

switched to tapazole 3 to 4

weeks prior to the radioiodine treatment.

Recent research has concluded that PTU causes the gland to become more

resistant to radioiodine

treatment.

You will be asked to stop the antithyroid medication two to five days before

the RAI and to restart

the medication at smaller doses three to five days after the RAI.>>>>

>

>Reply-To: graves_supportegroups

>To: graves_supportegroups

>Subject: RAI

>Date: Sun, 30 Apr 2000 20:56:04 -0700 (PDT)

>

>I read that one needs to discontinue Anti-thyroid drugs before having RAI.

>If you suppress your thyroid with ATDs, then the thyroid is taking up less

>iodine.

>When you give radioactive iodine (during RAI, to kill the thyroid), the

>radioactive iodine is not taken up (by the thyroid) and the procedure does

>not work.

>You have to be off of ATDs so the thyroid sucks up all the radioactive

>iodine.

>Just my thoughts

>Barb

>Seattle

>

>

>

> > YES, YES, YES....e

> > It is ABSOLUTELY NECESSARY you're euthyroid (normal hormone readings)

>PRIOR

> > RAI.

> >

>

________________________________________________________________________

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

[Guest guest]

Hi Barb

In my post dated April 8 " LONG to e " I wrote:

<<<<When RAI is chosen, and if you're having PTU make sure that you're

switched to tapazole 3 to 4

weeks prior to the radioiodine treatment.

Recent research has concluded that PTU causes the gland to become more

resistant to radioiodine

treatment.

You will be asked to stop the antithyroid medication two to five days before

the RAI and to restart

the medication at smaller doses three to five days after the RAI.>>>>

>

>Reply-To: graves_supportegroups

>To: graves_supportegroups

>Subject: RAI

>Date: Sun, 30 Apr 2000 20:56:04 -0700 (PDT)

>

>I read that one needs to discontinue Anti-thyroid drugs before having RAI.

>If you suppress your thyroid with ATDs, then the thyroid is taking up less

>iodine.

>When you give radioactive iodine (during RAI, to kill the thyroid), the

>radioactive iodine is not taken up (by the thyroid) and the procedure does

>not work.

>You have to be off of ATDs so the thyroid sucks up all the radioactive

>iodine.

>Just my thoughts

>Barb

>Seattle

>

>

>

> > YES, YES, YES....e

> > It is ABSOLUTELY NECESSARY you're euthyroid (normal hormone readings)

>PRIOR

> > RAI.

> >

>

________________________________________________________________________

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

[Guest guest]

Hi Red,

what wonderful information you've found. I especially like the schizophrenia.

There have been 2 or 3 long term studies that came out in the last year

showing increased rates of thyroid cancer and small bowel cancer following

RAI. One of the studies lists leukemia as well. Here's a few you can probably

get the abstracts or articles from on the Net.

lyn, J.A., et al " Cancer Incidence and Mortality after Radioiodine

Treatment for Hyperthyroidism:a Population-Based Cohort Study, " Lancet, June

1999;353(9170):2111-2115.

lyn, J.A., et al, " Mortality after the Treatment of Hyperthyroidism with

Radioactive Iodine, " The New England Journal of Medicine, March 12, 1998,

Vol. 338 (11), 712-718.

Chiovatoe, L., et al, " Outcome of Thyroid Function in Graves' Patients

Treated with Radioiodine: Role of Thyroid Stimulating and Thyrotropin

Blocking Antibdoes and of Radioiodine Induced Thyroid Damage, " Journal of

Clinical Endocrinology and Metabolism, vol. 83(1), 1998, 40-46.

Ron, elaine, et al, " Cancer Mortality Following Treatment for Adult

Hyperthyroidism, " JAMA, July 22/29, 1998, Vol 280(4):347-365.

I have info on the history of RAI too. The first studies showed an increased

rate of thyroid cancer so it was decided that RAI was unsafe. Then the first

cooperative study of several institutions came out and they scrapped data

from the first year and only assessed mortality. From this info, and a lot of

pushing from certain pioneers, it was deemed RAI was safe.

, Davod. " Treatment of Thryotoxicosis " in Werner and Ingbar's The

Thyroid, a Fundamental and Clinical Text, 7th Edition, Braverman and Utiger,

Editors, Lippincott-Raven, Philadelphia, 1996, 717.

[Guest guest]

In a message dated 9/21/00 9:30:46 AM Central Daylight Time,

redhengirl@... writes:

<< Subj: RAI

Date: 9/21/00 9:30:46 AM Central Daylight Time

From: redhengirl@...

Reply-to: graves_supportegroups

To: graves_supportegroups

Here's a repeat of a post I made a couple of years ago after doing an

extensive study of newly declassified documents by the Department of Energy.

I was looking for those " long term studies " which are always being mentioned

when doctors assure patients that I-131 is a safe therapy for Graves'

Disease.

A while ago, I issued the challenge that someone SHOW ME THE (long term)

STUDIES of the Radioactive Iodine research was supposed to have been done

fifty years ago.

TOO MANY IGORS

It's been repeated so often by so many people that RAI is safe, that I

maintain that these studies should be available to read somewhere. Well, no

one did manage to dig them up, so I took it upon myself to live in the

" cyber

archives " of the Department of Energy to review the recently declassified

documents detailing the pioneering efforts in medical uses for radioactive

materials.

So far, what I've managed to uncover makes me feel I've stumbled into a

Junior High School Science Class gone berserk or into the old Larsen

cartoon picturing lab-coated men fist fighting, entitled: " A Case of Too

Many

Mad Scientists and Not Enough Igors " !

One of the preeminent pioneers of RAI research drank it in front of his

classes to demonstrate how completely harmless it was. Of course, he and two

other colleagues died of leukemia and one shot himself, possibly after being

diagnosed. One of the last living medical pioneers stated categorically that

there is NO safe dose of radiation.

There was a " study " of 15 patients given I-131 in the 1940s, some of whom

had

Graves', others had thyroid cancer. After reading 181 documents related to

that experiment, all I can glean in terms of a report is that four of the

subjects showed no notable change and that " clinical follow- up (showed)

treatment insufficient. " No details are available so far as to how the

" experiment " was conducted, how much RAI was administered, or what the

clinical follow-up consisted of.

From 1955-1957, " Hyperthermic Research " was conducted in a military

installation in the Arctic, presumably to see if it would raise body

temperature(?) They used 65 microcuries on presumably healthy people,

" several hundred times less than the 10 millicuries used in the treatment of

Graves'. The results, as far as I can tell, were inconclusive. They stressed

that this amount " would not be expected to cause adverse health effects " .

Was

there any long-term follow- up of these individuals? Darned if I can find

out.

The last study I read about so far was one conducted on " consenting, "

physically healthy schizophrenic patients. The head researcher was quoted as

saying: " One thing about the schizophrenia [patients], they're pretty hyper;

so is an active [hyperthyroid patient]. So, they had this in common. Was the

thyroid in some hidden way involved to create this jitterness sic)? [That]

was the question we tried to answer. " Hmm, I see.

I'm hoping that I just haven't come upon the " real " long-term studies yet,

or

that they're still classified for some unfathomable reason. If not, we may

be

in more trouble than we'd like think about in this country. In 1993, a pilot

study was drawn up to try to follow-up on " thyroid damage done in the 1940s

from radioactive fallout. (This is the same I-131 that we're talking about

in

the medical " research. " The plan is to first look for LIVING persons in the

original areas of the testing. 'Interesting plan. Well, in the meantime, if

anyone out there comes up with the REAL research, would you throw me a hint

as to where to find it? I'm still looking.

>>

I will. I am going to Vanderbuilt. I will ask my doctor to make me some

copies..thanks a bunch..Kim do you the name of the doctors that died and

shot themselves? thanks Kim

[Guest guest]

In a message dated 9/21/00 9:30:46 AM Central Daylight Time,

redhengirl@... writes:

<< Subj: RAI

Date: 9/21/00 9:30:46 AM Central Daylight Time

From: redhengirl@...

Reply-to: graves_supportegroups

To: graves_supportegroups

Here's a repeat of a post I made a couple of years ago after doing an

extensive study of newly declassified documents by the Department of Energy.

I was looking for those " long term studies " which are always being mentioned

when doctors assure patients that I-131 is a safe therapy for Graves'

Disease.

A while ago, I issued the challenge that someone SHOW ME THE (long term)

STUDIES of the Radioactive Iodine research was supposed to have been done

fifty years ago.

TOO MANY IGORS

It's been repeated so often by so many people that RAI is safe, that I

maintain that these studies should be available to read somewhere. Well, no

one did manage to dig them up, so I took it upon myself to live in the

" cyber

archives " of the Department of Energy to review the recently declassified

documents detailing the pioneering efforts in medical uses for radioactive

materials.

So far, what I've managed to uncover makes me feel I've stumbled into a

Junior High School Science Class gone berserk or into the old Larsen

cartoon picturing lab-coated men fist fighting, entitled: " A Case of Too

Many

Mad Scientists and Not Enough Igors " !

One of the preeminent pioneers of RAI research drank it in front of his

classes to demonstrate how completely harmless it was. Of course, he and two

other colleagues died of leukemia and one shot himself, possibly after being

diagnosed. One of the last living medical pioneers stated categorically that

there is NO safe dose of radiation.

There was a " study " of 15 patients given I-131 in the 1940s, some of whom

had

Graves', others had thyroid cancer. After reading 181 documents related to

that experiment, all I can glean in terms of a report is that four of the

subjects showed no notable change and that " clinical follow- up (showed)

treatment insufficient. " No details are available so far as to how the

" experiment " was conducted, how much RAI was administered, or what the

clinical follow-up consisted of.

From 1955-1957, " Hyperthermic Research " was conducted in a military

installation in the Arctic, presumably to see if it would raise body

temperature(?) They used 65 microcuries on presumably healthy people,

" several hundred times less than the 10 millicuries used in the treatment of

Graves'. The results, as far as I can tell, were inconclusive. They stressed

that this amount " would not be expected to cause adverse health effects " .

Was

there any long-term follow- up of these individuals? Darned if I can find

out.

The last study I read about so far was one conducted on " consenting, "

physically healthy schizophrenic patients. The head researcher was quoted as

saying: " One thing about the schizophrenia [patients], they're pretty hyper;

so is an active [hyperthyroid patient]. So, they had this in common. Was the

thyroid in some hidden way involved to create this jitterness sic)? [That]

was the question we tried to answer. " Hmm, I see.

I'm hoping that I just haven't come upon the " real " long-term studies yet,

or

that they're still classified for some unfathomable reason. If not, we may

be

in more trouble than we'd like think about in this country. In 1993, a pilot

study was drawn up to try to follow-up on " thyroid damage done in the 1940s

from radioactive fallout. (This is the same I-131 that we're talking about

in

the medical " research. " The plan is to first look for LIVING persons in the

original areas of the testing. 'Interesting plan. Well, in the meantime, if

anyone out there comes up with the REAL research, would you throw me a hint

as to where to find it? I'm still looking.

>>

I will. I am going to Vanderbuilt. I will ask my doctor to make me some

copies..thanks a bunch..Kim do you the name of the doctors that died and

shot themselves? thanks Kim

[Guest guest]

Hi Redhen-

I have one long-term study. It is retroactive and involves 35,593 hyperthyroid

patients that were treated between

1946 and 1964. It only examines cancer mortality though. There is no data on

any other effects. And remember

different types of cancer have different degrees of mortality. I wish I had a

scanner so that I could send it to

you but I'll give you the reference instead. It's in JAMA. 1998; Vol 280(

No.4):347-355 and is titled Cancer

Mortality Following Treatment for Adult Hyperthyroidism by Elaine Ron, et al.

I've carefully gone over it and don't believe it is inclusive enough. It is

probably one of the main studies used

that " OK's " RAI. The mean age of patients in the study was 49 and the years of

follow-up were 19. Well, I'd like

to know how they do at 50+ years post-RAI. And what other kinds of trouble did

these patients have? And how is it

OK to extrapolate a study that examines people in their late 40s and 50s to much

younger people? I agree with you

that the research for RAI is inadequate.

I have read other studies that essentially promote RAI use in children. I was

horrified to read that the longest

they followed any of these children was 12 years and most weren't followed that

long. And how do you look for

problems with them when you don't know what to look for?

Take care,

> Here's a repeat of a post I made a couple of years ago after doing an

> extensive study of newly declassified documents by the Department of Energy.

> I was looking for those " long term studies " which are always being mentioned

> when doctors assure patients that I-131 is a safe therapy for Graves' Disease.

> A while ago, I issued the challenge that someone SHOW ME THE (long term)

> STUDIES of the Radioactive Iodine research was supposed to have been done

> fifty years ago.

>

> TOO MANY IGORS

>

> It's been repeated so often by so many people that RAI is safe, that I

> maintain that these studies should be available to read somewhere. Well, no

> one did manage to dig them up, so I took it upon myself to live in the " cyber

> archives " of the Department of Energy to review the recently declassified

> documents detailing the pioneering efforts in medical uses for radioactive

> materials.

>

> So far, what I've managed to uncover makes me feel I've stumbled into a

> Junior High School Science Class gone berserk or into the old Larsen

> cartoon picturing lab-coated men fist fighting, entitled: " A Case of Too Many

> Mad Scientists and Not Enough Igors " !

>

> One of the preeminent pioneers of RAI research drank it in front of his

> classes to demonstrate how completely harmless it was. Of course, he and two

> other colleagues died of leukemia and one shot himself, possibly after being

> diagnosed. One of the last living medical pioneers stated categorically that

> there is NO safe dose of radiation.

>

> There was a " study " of 15 patients given I-131 in the 1940s, some of whom had

> Graves', others had thyroid cancer. After reading 181 documents related to

> that experiment, all I can glean in terms of a report is that four of the

> subjects showed no notable change and that " clinical follow- up (showed)

> treatment insufficient. " No details are available so far as to how the

> " experiment " was conducted, how much RAI was administered, or what the

> clinical follow-up consisted of.

>

> >From 1955-1957, " Hyperthermic Research " was conducted in a military

> installation in the Arctic, presumably to see if it would raise body

> temperature(?) They used 65 microcuries on presumably healthy people,

> " several hundred times less than the 10 millicuries used in the treatment of

> Graves'. The results, as far as I can tell, were inconclusive. They stressed

> that this amount " would not be expected to cause adverse health effects " . Was

> there any long-term follow- up of these individuals? Darned if I can find out.

>

> The last study I read about so far was one conducted on " consenting, "

> physically healthy schizophrenic patients. The head researcher was quoted as

> saying: " One thing about the schizophrenia [patients], they're pretty hyper;

> so is an active [hyperthyroid patient]. So, they had this in common. Was the

> thyroid in some hidden way involved to create this jitterness sic)? [That]

> was the question we tried to answer. " Hmm, I see.

>

> I'm hoping that I just haven't come upon the " real " long-term studies yet, or

> that they're still classified for some unfathomable reason. If not, we may be

> in more trouble than we'd like think about in this country. In 1993, a pilot

> study was drawn up to try to follow-up on " thyroid damage done in the 1940s

> from radioactive fallout. (This is the same I-131 that we're talking about in

> the medical " research. " The plan is to first look for LIVING persons in the

> original areas of the testing. 'Interesting plan. Well, in the meantime, if

> anyone out there comes up with the REAL research, would you throw me a hint

> as to where to find it? I'm still looking.

>

[Guest guest]

Oops! Elaine beat me to the Ron et al. paper.

daisyelaine@... wrote.

>

> Hi Red,

> what wonderful information you've found. I especially like the schizophrenia.

> There have been 2 or 3 long term studies that came out in the last year

> showing increased rates of thyroid cancer and small bowel cancer following

> RAI. One of the studies lists leukemia as well. Here's a few you can probably

> get the abstracts or articles from on the Net.

>

> lyn, J.A., et al " Cancer Incidence and Mortality after Radioiodine

> Treatment for Hyperthyroidism:a Population-Based Cohort Study, " Lancet, June

> 1999;353(9170):2111-2115.

>

> lyn, J.A., et al, " Mortality after the Treatment of Hyperthyroidism with

> Radioactive Iodine, " The New England Journal of Medicine, March 12, 1998,

> Vol. 338 (11), 712-718.

>

> Chiovatoe, L., et al, " Outcome of Thyroid Function in Graves' Patients

> Treated with Radioiodine: Role of Thyroid Stimulating and Thyrotropin

> Blocking Antibdoes and of Radioiodine Induced Thyroid Damage, " Journal of

> Clinical Endocrinology and Metabolism, vol. 83(1), 1998, 40-46.

>

> Ron, elaine, et al, " Cancer Mortality Following Treatment for Adult

> Hyperthyroidism, " JAMA, July 22/29, 1998, Vol 280(4):347-365.

>

> I have info on the history of RAI too. The first studies showed an increased

> rate of thyroid cancer so it was decided that RAI was unsafe. Then the first

> cooperative study of several institutions came out and they scrapped data

> from the first year and only assessed mortality. From this info, and a lot of

> pushing from certain pioneers, it was deemed RAI was safe.

>

> , Davod. " Treatment of Thryotoxicosis " in Werner and Ingbar's The

> Thyroid, a Fundamental and Clinical Text, 7th Edition, Braverman and Utiger,

> Editors, Lippincott-Raven, Philadelphia, 1996, 717.

[Guest guest]

Bad news - RAI is already in use for children.

Fay Young

________________________________________________________________

YOU'RE PAYING TOO MUCH FOR THE INTERNET!

Juno now offers FREE Internet Access!

Try it today - there's no risk! For your FREE software, visit:

http://dl.www.juno.com/get/tagj.

[Guest guest]

Bad news - RAI is already in use for children.

Fay Young

________________________________________________________________

YOU'RE PAYING TOO MUCH FOR THE INTERNET!

Juno now offers FREE Internet Access!

Try it today - there's no risk! For your FREE software, visit:

http://dl.www.juno.com/get/tagj.

[Guest guest]

Hi Fay-

I know. That's why I started looking for studies OKing it's use in children in

the first place.

I've talked to one mother that was furious that the possible problems weren't

explained to her before she made this

decision for her little girl. Since she already had it done, she no longer can

change her mind.

Can you imagine how difficult it must be? It's one thing to make that decision

for yourself but quite another to

make it for your baby that has her whole life to live yet.

Take care,

hkfjhsf Young wrote:

>

> Bad news - RAI is already in use for children.

> Fay Young

> ________________________________________________________________

> YOU'RE PAYING TOO MUCH FOR THE INTERNET!

> Juno now offers FREE Internet Access!

> Try it today - there's no risk! For your FREE software, visit:

> http://dl.www.juno.com/get/tagj.

>

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

> 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]

Hi Fay-

I know. That's why I started looking for studies OKing it's use in children in

the first place.

I've talked to one mother that was furious that the possible problems weren't

explained to her before she made this

decision for her little girl. Since she already had it done, she no longer can

change her mind.

Can you imagine how difficult it must be? It's one thing to make that decision

for yourself but quite another to

make it for your baby that has her whole life to live yet.

Take care,

hkfjhsf Young wrote:

>

> Bad news - RAI is already in use for children.

> Fay Young

> ________________________________________________________________

> YOU'RE PAYING TOO MUCH FOR THE INTERNET!

> Juno now offers FREE Internet Access!

> Try it today - there's no risk! For your FREE software, visit:

> http://dl.www.juno.com/get/tagj.

>

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

> 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]

I forgot to mention that this mother wrote me after her daughter started having

problems post-RAI.

[Guest guest]

I forgot to mention that this mother wrote me after her daughter started having

problems post-RAI.

[Guest guest]

And it has been for years.

[Guest guest]

Dear Redhen

This is truly scary stuff. Keep up the good detective work.

Take Care

Caroline

redhengirl@... wrote:

>

> Here's a repeat of a post I made a couple of years ago after doing an

> extensive study of newly declassified documents by the Department of Energy.

> I was looking for those " long term studies " which are always being mentioned

> when doctors assure patients that I-131 is a safe therapy for Graves' Disease.

> A while ago, I issued the challenge that someone SHOW ME THE (long term)

> STUDIES of the Radioactive Iodine research was supposed to have been done

> fifty years ago.

>

> TOO MANY IGORS

>

> It's been repeated so often by so many people that RAI is safe, that I

> maintain that these studies should be available to read somewhere. Well, no

> one did manage to dig them up, so I took it upon myself to live in the " cyber

> archives " of the Department of Energy to review the recently declassified

> documents detailing the pioneering efforts in medical uses for radioactive

> materials.

>

> So far, what I've managed to uncover makes me feel I've stumbled into a

> Junior High School Science Class gone berserk or into the old Larsen

> cartoon picturing lab-coated men fist fighting, entitled: " A Case of Too Many

> Mad Scientists and Not Enough Igors " !

>

> One of the preeminent pioneers of RAI research drank it in front of his

> classes to demonstrate how completely harmless it was. Of course, he and two

> other colleagues died of leukemia and one shot himself, possibly after being

> diagnosed. One of the last living medical pioneers stated categorically that

> there is NO safe dose of radiation.

>

> There was a " study " of 15 patients given I-131 in the 1940s, some of whom had

> Graves', others had thyroid cancer. After reading 181 documents related to

> that experiment, all I can glean in terms of a report is that four of the

> subjects showed no notable change and that " clinical follow- up (showed)

> treatment insufficient. " No details are available so far as to how the

> " experiment " was conducted, how much RAI was administered, or what the

> clinical follow-up consisted of.

>

> >From 1955-1957, " Hyperthermic Research " was conducted in a military

> installation in the Arctic, presumably to see if it would raise body

> temperature(?) They used 65 microcuries on presumably healthy people,

> " several hundred times less than the 10 millicuries used in the treatment of

> Graves'. The results, as far as I can tell, were inconclusive. They stressed

> that this amount " would not be expected to cause adverse health effects " . Was

> there any long-term follow- up of these individuals? Darned if I can find out.

>

> The last study I read about so far was one conducted on " consenting, "

> physically healthy schizophrenic patients. The head researcher was quoted as

> saying: " One thing about the schizophrenia [patients], they're pretty hyper;

> so is an active [hyperthyroid patient]. So, they had this in common. Was the

> thyroid in some hidden way involved to create this jitterness sic)? [That]

> was the question we tried to answer. " Hmm, I see.

>

> I'm hoping that I just haven't come upon the " real " long-term studies yet, or

> that they're still classified for some unfathomable reason. If not, we may be

> in more trouble than we'd like think about in this country. In 1993, a pilot

> study was drawn up to try to follow-up on " thyroid damage done in the 1940s

> from radioactive fallout. (This is the same I-131 that we're talking about in

> the medical " research. " The plan is to first look for LIVING persons in the

> original areas of the testing. 'Interesting plan. Well, in the meantime, if

> anyone out there comes up with the REAL research, would you throw me a hint

> as to where to find it? I'm still looking.

>

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

> 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]

Hi Lois,

I had RAI in '96 with the promise from my endo at that time that " in six

months you will feel so good you will see how sick you really were " ...she

lied Many endos will tell us that RAI will make us hypo and hypo is

*easier* to treat. What they don't tell you is hypo makes you feel worse

than you do when hyper (at least for me). She also told me my numbers were

higher than she had ever seen...another lie. I have seen many on here whose

numbers were over double mine, and a couple whose were higher yet. I feel I

would have been a great candidate for the ATD's and possibly could have

obtained remission. There are many here who use the ATD's and have done so

for a long time with much success. With RAI, the treatment is

permanent...and your thyroid dies. Please do yourself a HUGE favor and when

he/she tries to push you towards RAI, tell them NO, at least until you have

the time to research and make an informed decision. The ATD's will give you

that time...as much as you need usually.

Go to the archives for the group and where it says 'goto' and a block for a

number, type in the number 1 and just start reading. There is much to learn

from those that have dealt with GD for a long period of time and who are

very sage people.

Take care and keep reading and writing.

Jody

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[Guest guest]

Lois,

Forgot to add this, my new endo does not do RAI unless a patient pushes for

it, she would rather do the ATD's and if that won't work, then surgery.

When I asked her why, she told me they are just seeing way to many *new*

complications that are not normally associated with GD to make it

coincidence in those with RAI. When I say *new* she means

symptoms/complaints that many endos/drs. don't/won't associate with GD.

Jody

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[Guest guest]

I went into remission on ATDs and stayed there for six years. A setback

that I think was caused by serious emotional upset over finances sent me

into a second bout with Graves in '98. I am still resisting my endo's

recommendations for RAI and now on one PTU a day.

My two sisters are hypo-. They are slugs and will be the first to tell you

that they are. I prefer being alert.

Elaine

RAI

> I am wanting to know why people on the list are against RAI. I

> see my endocrinologist in two weeks and I believe that will be

> his recommendation. I do however want to be better informed. I

> feel much better on antithyroid meds and wonder if this could

> manage it an/or put it in remission. Any input would be

> appreciated. Also any recommendations for a " great "

> endocrinologist in Indianapolis?

>

>

>

[Guest guest]

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.

[Guest guest]

Hi ,

My new endo is great. She listens when I talk and reads what I bring in,

some from here and some from articles. My FT3 is just below normal now so I

don't think I am converting very well anymore...maybe you are on to

something with the RAI concept.

I go on Wed. to see her and can't wait. I will be starting with a T3/T4

compound perscription that she and the pharmacy will work out to see where I

should start. , the pharmacist, gave me info that explains the T3 will

be either slow acting or time released...I can't remember what it is and I

don't have the papers in front of me. But I should be on only one pill a

day...though I am sure I am going to be going through some ups and downs and

swings and curves and everything else that goes along with adding T3 But

I have to get some brain function back...it is getting so bad anymore it has

frustrated me to tears quite a bit lately. Oh well, here is to new

horizons, or to at least starting down the lane to them.

Jody

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[Guest guest]

Hi ,

My new endo is great. She listens when I talk and reads what I bring in,

some from here and some from articles. My FT3 is just below normal now so I

don't think I am converting very well anymore...maybe you are on to

something with the RAI concept.

I go on Wed. to see her and can't wait. I will be starting with a T3/T4

compound perscription that she and the pharmacy will work out to see where I

should start. , the pharmacist, gave me info that explains the T3 will

be either slow acting or time released...I can't remember what it is and I

don't have the papers in front of me. But I should be on only one pill a

day...though I am sure I am going to be going through some ups and downs and

swings and curves and everything else that goes along with adding T3 But

I have to get some brain function back...it is getting so bad anymore it has

frustrated me to tears quite a bit lately. Oh well, here is to new

horizons, or to at least starting down the lane to them.

Jody

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[Guest guest]

Faye,

I'm in WNY, my endo is in Buffalo, about an hour from me and well worth the

drive...for anyone that may be in this area her name is Dr. O'Shea

Farrell and she is out of Sisters Hospital.

I found her using the physician search at About.com. There were 2 patient

referrals about her regarding GD...if your looking for an endo using patient

referrals I suggest you go there, it is really easy to use, you look up by

specialist and state...least that is how it was 8 months ago.

Jody

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[Guest guest]

Hi Jody-

Your endo sounds even better than mine.

I wonder if the inability to adequately convert T4 to T3 in various tissues

is one of those complications. I didn't have any conversion problems prior

to RAI. I had originally thought it was from not getting something from

thyroid replacement to trigger the enzyme that does the conversion. But now

my T3 levels are high enough (I'm on 4 gr of Armour/natural thyroid hormone

which has everything) but something is still just not right in my noggin.

When I take enough T3 to clear up my noggin, I have hyper symptoms. When I

take just enough to get rid of the aches and pains, I'm not hyper but my

noggin doesn't work right and I'm tired. The brain needs so much more

energy than the rest of the organ systems that I'm worried that I have to

make a choice since I'm not adequately converting still. It seems like I

can have normal brain function and be hyper (potentially damaging some

organs later) or be euthyroid and a stupid slug (preserving other organs).

Elaine (Daisy)! Have you read any articles regarding this? If so, can I

have some references.

Take care,

> Lois,

> Forgot to add this, my new endo does not do RAI unless a patient pushes

for

> it, she would rather do the ATD's and if that won't work, then surgery.

> When I asked her why, she told me they are just seeing way to many *new*

> complications that are not normally associated with GD to make it

> coincidence in those with RAI. When I say *new* she means

> symptoms/complaints that many endos/drs. don't/won't associate with GD.

> Jody

[Guest guest]

Hi Jody-

Your endo sounds even better than mine.

I wonder if the inability to adequately convert T4 to T3 in various tissues

is one of those complications. I didn't have any conversion problems prior

to RAI. I had originally thought it was from not getting something from

thyroid replacement to trigger the enzyme that does the conversion. But now

my T3 levels are high enough (I'm on 4 gr of Armour/natural thyroid hormone

which has everything) but something is still just not right in my noggin.

When I take enough T3 to clear up my noggin, I have hyper symptoms. When I

take just enough to get rid of the aches and pains, I'm not hyper but my

noggin doesn't work right and I'm tired. The brain needs so much more

energy than the rest of the organ systems that I'm worried that I have to

make a choice since I'm not adequately converting still. It seems like I

can have normal brain function and be hyper (potentially damaging some

organs later) or be euthyroid and a stupid slug (preserving other organs).

Elaine (Daisy)! Have you read any articles regarding this? If so, can I

have some references.

Take care,

> Lois,

> Forgot to add this, my new endo does not do RAI unless a patient pushes

for

> it, she would rather do the ATD's and if that won't work, then surgery.

> When I asked her why, she told me they are just seeing way to many *new*

> complications that are not normally associated with GD to make it

> coincidence in those with RAI. When I say *new* she means

> symptoms/complaints that many endos/drs. don't/won't associate with GD.

> Jody