Re: Jody, and all RAI

[Guest guest]

In a message dated 9/19/00 9:39:49 AM Central Daylight Time,

luckystrike@... writes:

<< Subj: Re: OUCH! + decision

Date: 9/19/00 9:39:49 AM Central Daylight Time

From: luckystrike@... (Jody Spitale)

Reply-to: graves_supportegroups

To: graves_supportegroups

Faye,

Maybe you should ask your sister to read some things here in the archives

and on other GD boards to see what actually happens, and what the outcome of

RAI is? To hear from people who have GD and what we go through in hyper and

hypo, the symptoms, the fears, the frustrations, etc. Might make her even a

better dr. and then send make her decide to become an endo who will make a

differecne In no way am I poking fun at her or questioning her ability

to become a dr. I only suggest this because people who don't have GD can

not and will not ever beable to understand this disease and lab values sure

don't tell the story, as we all know

Jody

________ >>

I go to an Endo at Vanderbuilt hospital. I told him about so many people

having problems with the RAI. He said they do 100's at Vandy and have no

problem. Also with the surgery. He said they have one guy that that's all

he does is thyroids. Is there anyone on here that had positive effects from

either one? I told about everyone gaining weight and he said that was if

they went all the way hypo? What do ya'll think? I am contemplating both

.....thanks Kim

[Guest guest]

Kim,

Whatever decision you make must be YOUR own decision. The only thing I can

truly harp on is before you make that decision, read and keep reading,

asking questions, pay special attention to people who have had RAI that have

then developed TED (thyroid eye disease). I am one of the *lucky* ones so

far, but there is no guarantee. My TED is slight compared to many others,

and it is the thing I fear the most. And an honest dr. will tell you that

the chances of getting TED after RAI are significantly higher. My current

endo no longer does RAI unless there are no other options open to her and

the patient...she says so far that hasn't happened. So some drs. are coming

around.

Personnal observations...

Most drs. still believe what they were taught in medical school that RAI is

perfectly safe and there are no complications or side effects, unless one

counts going hypo (which is the reason for RAI).

Ask yourself, How SAFE can it be to put this radioactive pill (or cocktail)

into my body? If there are no complications or side effects, how come I

have to stay away from my significant other, my children, flush at least 3

times after using the toilet, use disposable tableware, etc....How come this

dr. that is bringing me this pill that is so SAFE is wearing a lead apron,

goggles and gloves?

How come he hands me this SAFE pill in a lead container? How come this lead

container, covered with a lead lid holds the pill inside it inside a glass

tube?

I never asked these questions Kim, I never thought to because I had been

brough up to believe that drs. know what they are doing, afterall they have

all this education behind them...no one ever told me that drs. make

mistakes, that drs. are not *god*, that drs. don't know it all...in many

cases I think most drs. haven't been told they make mistakes, they don't

know it all and they are not *god*. I will NEVER again in my life have any

form of treatment without asking questions again, without reading until my

eyes go blurry, without feeling good about my decision.

I also believe that in my lifetime we will see RAI no longer used, they will

stop it under the guise of *finding a more modern treatment* because they

(drs., govt., fda, etc) cannot say it is pulled because it is NOT safe

afterall...if anyone did that, oh the lawsuits...I don't think the US Mint

could make enough money to settle those.

If I could do it over, knowing what I know now...I would 1 - try the ATD's

and work towards remission. If for some reason I couldn't tolerate any of

the ATD's I would opt for surgery with a surgeon that knows thyroids inside

out, does surgery regularly, and pray he doesn't hit my voice box (oh lordy,

me not talking GASP) I can not think of any reason at all that I would do

RAI. It isn't fair to give us this and then not know or not accept or not

believe or not care what the outcome of such a permanent step is. I will

never again tolerate for a dr. to tell me my hypo symptoms (from RAI 4 1/2

years ago) are " all in your head " and that is pretty much the pat answer

from drs. who believe or push RAI for THEIR convenience. If another dr.

ever told me that I think I would pull a Graves Rage and do him bodily harm

Kim,

Learning to live with a chronic disease is not easy, accepting some of the

things that go alone with it are not fun, but you have to find a way to

accept that you have one, that you need to educate yourself as much as you

possibly can and that, unforunately there is no *quick fix* for it. I truly

do know and understand wanting the simple answers, wishing this could be

something my mom could 'kiss and make better', not wanting to deal with it

at all and go on my merry way, but if I did that, it would kill me. Only

thing I can say is, you have time to learn, you don't have to be rushed into

it...then if you do choose RAI, that is YOUR choice, and you will go into

knowing what can happen...and everyone here WILL support and respect your

decision. Everyone will still be here when you start experiencing changes

you will go through, no matter what treatment plan you choose. The care and

compassion never leaves this group. And one day, down the road, you will be

writing to others newly diagnosed too...telling them to read and learn

before making a decision I can just about go to the bank on that one

Keep reading Kim, and hang in there.

Jody

_________________________________________________________________________

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

Share information about yourself, create your own public profile at

http://profiles.msn.com.

[Guest guest]

Kim,

I live in a small city and had to travel 50 miles to have my RAI done

because our hospital here (which is large for the city) does not allow RAI

to be done...the dosage for it are to high for what they feel is safe to

expose their personnal to...that is from the dr. in the neuclear medicine

dept...now I drive 68 miles to see my new endo, in a much bigger city in a

hospital the size of ours, and I found her on the internet, recommended by

patients who already see her. She is a no bones dr. and woman and she never

suggests that symptoms are 'all in my head' nor does she take them with a

grain of salt. She has been treating thyroid patients for 18 years.

Referring to your last post that I wrote a book about...I'm betting your

endo who says they do 100's with no problems is one who would say 'its all

in your head' when you go to him about the aches, the pains, the hair loss,

the memory loss and a myrad of other symptoms...and I would also ask him

what he considers 'all the way hypo'? My last bout with hypo was

*discovered* after a year of it, this past January. I was in a huge

depression, didn't care if I lived or died, my primary was being a jerk,

come to find out I was hypo again...hmmmm I felt worse than I did the first

time I went hypo after RAI, whatever were my hypo numbers...Well my TSH was

7.65 (normal being .49-4.75) GASP, man *I* was really hypo, how could they

do this to me...well since then I have begun reading, researching and asking

questions of those who know so much better than I...and I have seen others

whose TSH were at 70...and *I* was hypo. I'm sorry I don't mean to be flip

or sarcastic, honest. This just isn't a quick fix, all better, on our merry

way disease...so would you ask your endo before you make a decision what he

considers 'all the way hypo' to be? I would be curious to know. Thanks

tons.

Jody

_________________________________________________________________________

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

Share information about yourself, create your own public profile at

http://profiles.msn.com.

[Guest guest]

And the endos pushing RAI are not especially open about it. It was *not*

until I made it absolutely clear that I would *not* have RAI that the endo

told me it would have exacerbated my already threatened eyes. He even

continued to push for RAI when I was receiving radiation and treatment by

eye specialists/oncology units for swelling and double vision. He never

once told me that it would worsen TED. Only when I suggested I needed a

baseball bat to get my opinion across to him that I would not accept RAI did

he tell me the probable outcome would be worsening sight.

I loathe the US medical establishment.

Elaine (Virginia)

PS I take 1 mg copper and 40 mcg selenium. Have since early this year. I

think someone was interested in dosages. I feel good, appear to be entering

a second remission, have no idea if that small amount of selenium and copper

is helping. I plan to continue to take it right along with the other

vitamins I regularly took before.

Re: Jody, and all RAI

>

> Ask him if he will give you the name of someone who has had successful

> RAI, as they do with cancer patients. There are people who have no

> problems. But when things go wrong like your eyes your life becomes a

> living hell.

[Guest guest]

Ask him if he will give you the name of someone who has had successful

RAI, as they do with cancer patients. There are people who have no

problems. But when things go wrong like your eyes your life becomes a

living hell.

[Guest guest]

>>>> Most drs. still believe what they were taught in medical school

that RAI is perfectly safe and there are no complications or side

effects, unless one counts going hypo (which is the reason for

RAI).<<<<

I used to think the same but currently I doubt it.

They don't need to be experts in radiation to know how radiation

works. ly, I've seen too many testimonials from RAI'd people as

to believe now that doc's are that honest.

Think of ElaineTM's words today. She says: " It was only after I

suggested I needed a baseball bat to get my opinion across to him

that I would not accept RAI did he tell me the probable outcome would

be worsening sight " .

And " He even continued to push for RAI when I was receiving radiation

and treatment by eye specialists/oncology units for swelling and

double vision " .

Oh God!. Will this ever end???.

>>>> I also believe that in my lifetime we will see RAI no longer

used, they will stop it under the guise of *finding a more modern

treatment* because they (drs., govt., fda, etc) cannot say it is

pulled because it is NOT safe afterall...if anyone did that, oh the

lawsuits...I don't think the US Mint could make enough money to

settle those.<<<<

Jody, I also hope and wish that in my lifetime I will see RAI as a

treatment for Graves' is sent to the museum of Raioactive Qwack

cures, where it belongs, to accompany other radioactive " cures " like

radioendocrinator ( " The last Word in Scientific Manufacture " as it

was advertised), which only brought misery to those who used it.

And also hope and wish that people start sueing docs. gov. or whoever

had to do with it.

Jody, thanks a lot for your post, and for your sage thoughts on RAI.

A.

[Guest guest]

I will eventually send Dr. Sister (don't mean Dr. Nurse for all of you

abroad) info but she's so busy I don't expect her to return my calls for

the next 8 years.

I just went to the endo. after 2 months of 20 mg. of Tapazole. He was not

encouraging and talked about discontinuing the Tap after 12 - NOT 18 -

months. Could someone have a few spoonfuls of chocolate chips for me?

Thanks.

Fay Young

P.S. I finally asked him why RAI isn't the first option in many other

developed countries. His answer: Beats me. Many other countries are

starting to use RAI more frequently though in Japan, for example, the

rate's likely to stay really low since radiation is a dirty word there

thanks to the atomic bomb.

P.S.S. Thanks everyone for your testimonials and thanks Elaine for

explaining something else I forgot to ask - why taking a lengthy medical

history and careful calibration to decrease the risks of post-RAI

hypothyroidism seems to be a lost art.

________________________________________________________________

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]

Fay:

I am retroactively dedicating the cookies I had this morning to you.

I have been told by 3 different endos that research shows the longer you

are on ATDs the better chance of remission. 12 months is not long enough.

I'm on my 10th month of PTU, on a very low dosage, and I'm happy to stick

with it.

At 08:47 AM 09/20/2000 -0400, you wrote:

>

>I just went to the endo. after 2 months of 20 mg. of Tapazole. He was not

>encouraging and talked about discontinuing the Tap after 12 - NOT 18 -

>months. Could someone have a few spoonfuls of chocolate chips for me?

>Thanks.

>Fay Young

>

[Guest guest]

Fay:

I am retroactively dedicating the cookies I had this morning to you.

I have been told by 3 different endos that research shows the longer you

are on ATDs the better chance of remission. 12 months is not long enough.

I'm on my 10th month of PTU, on a very low dosage, and I'm happy to stick

with it.

At 08:47 AM 09/20/2000 -0400, you wrote:

>

>I just went to the endo. after 2 months of 20 mg. of Tapazole. He was not

>encouraging and talked about discontinuing the Tap after 12 - NOT 18 -

>months. Could someone have a few spoonfuls of chocolate chips for me?

>Thanks.

>Fay Young

>

[Guest guest]

I agree. I also thought I had seen a suggestion in literature that two

years on ATDs is not uncommon. I have been on PTU since 1998 with no side

effects.

Elaine

----- Original Message -----

> Fay:

>

> I am retroactively dedicating the cookies I had this morning to you.

>

> I have been told by 3 different endos that research shows the longer you

> are on ATDs the better chance of remission. 12 months is not long enough.

> I'm on my 10th month of PTU, on a very low dosage, and I'm happy to stick

> with it.

>

[Guest guest]

Hi -

Many young doctors honestly think that RAI is safe and the way to go in the

U.S. They have it pumped into their

heads in medical school (my husband did too, that's why he encouraged me to have

it done 13 years ago-Boy! Did he

change his mind!). Unfortunately, this is primarily a disease of women and I

think that medicine has historically

looked for quick fixes without really examining long-term consequences. Just

remember all those hysterectomies in

the 70s and early 80s. They'd never dream of doing those now for the same

complaints that they did then. RAI is,

hopefully, headed the same way.

I don't really know what the endos think after practicing for years and having

many patients that don't do well

after RAI. Seems to me that they'd start seeing a connection. All of us need

to remember too, that other things

are considered in addition to the best interests of the patient. Cost and ease

of treatment are also added into the

mix. Most patients aren't told that and assume that the doctor is thinking in

their best interests only.

Take care,

>

> >>>> Most drs. still believe what they were taught in medical school

> that RAI is perfectly safe and there are no complications or side

> effects, unless one counts going hypo (which is the reason for

> RAI).<<<<

>

> I used to think the same but currently I doubt it.

> They don't need to be experts in radiation to know how radiation

> works. ly, I've seen too many testimonials from RAI'd people as

> to believe now that doc's are that honest.

>

> Think of ElaineTM's words today. She says: " It was only after I

> suggested I needed a baseball bat to get my opinion across to him

> that I would not accept RAI did he tell me the probable outcome would

> be worsening sight " .

>

> And " He even continued to push for RAI when I was receiving radiation

> and treatment by eye specialists/oncology units for swelling and

> double vision " .

>

> Oh God!. Will this ever end???.

>

> >>>> I also believe that in my lifetime we will see RAI no longer

> used, they will stop it under the guise of *finding a more modern

> treatment* because they (drs., govt., fda, etc) cannot say it is

> pulled because it is NOT safe afterall...if anyone did that, oh the

> lawsuits...I don't think the US Mint could make enough money to

> settle those.<<<<

>

> Jody, I also hope and wish that in my lifetime I will see RAI as a

> treatment for Graves' is sent to the museum of Raioactive Qwack

> cures, where it belongs, to accompany other radioactive " cures " like

> radioendocrinator ( " The last Word in Scientific Manufacture " as it

> was advertised), which only brought misery to those who used it.

>

> And also hope and wish that people start sueing docs. gov. or whoever

> had to do with it.

>

> Jody, thanks a lot for your post, and for your sage thoughts on RAI.

>

> A.

[Guest guest]

Hi -

Many young doctors honestly think that RAI is safe and the way to go in the

U.S. They have it pumped into their

heads in medical school (my husband did too, that's why he encouraged me to have

it done 13 years ago-Boy! Did he

change his mind!). Unfortunately, this is primarily a disease of women and I

think that medicine has historically

looked for quick fixes without really examining long-term consequences. Just

remember all those hysterectomies in

the 70s and early 80s. They'd never dream of doing those now for the same

complaints that they did then. RAI is,

hopefully, headed the same way.

I don't really know what the endos think after practicing for years and having

many patients that don't do well

after RAI. Seems to me that they'd start seeing a connection. All of us need

to remember too, that other things

are considered in addition to the best interests of the patient. Cost and ease

of treatment are also added into the

mix. Most patients aren't told that and assume that the doctor is thinking in

their best interests only.

Take care,

>

> >>>> Most drs. still believe what they were taught in medical school

> that RAI is perfectly safe and there are no complications or side

> effects, unless one counts going hypo (which is the reason for

> RAI).<<<<

>

> I used to think the same but currently I doubt it.

> They don't need to be experts in radiation to know how radiation

> works. ly, I've seen too many testimonials from RAI'd people as

> to believe now that doc's are that honest.

>

> Think of ElaineTM's words today. She says: " It was only after I

> suggested I needed a baseball bat to get my opinion across to him

> that I would not accept RAI did he tell me the probable outcome would

> be worsening sight " .

>

> And " He even continued to push for RAI when I was receiving radiation

> and treatment by eye specialists/oncology units for swelling and

> double vision " .

>

> Oh God!. Will this ever end???.

>

> >>>> I also believe that in my lifetime we will see RAI no longer

> used, they will stop it under the guise of *finding a more modern

> treatment* because they (drs., govt., fda, etc) cannot say it is

> pulled because it is NOT safe afterall...if anyone did that, oh the

> lawsuits...I don't think the US Mint could make enough money to

> settle those.<<<<

>

> Jody, I also hope and wish that in my lifetime I will see RAI as a

> treatment for Graves' is sent to the museum of Raioactive Qwack

> cures, where it belongs, to accompany other radioactive " cures " like

> radioendocrinator ( " The last Word in Scientific Manufacture " as it

> was advertised), which only brought misery to those who used it.

>

> And also hope and wish that people start sueing docs. gov. or whoever

> had to do with it.

>

> Jody, thanks a lot for your post, and for your sage thoughts on RAI.

>

> A.

[Guest guest]

You are right. If we could be monitored weekly after RAI that might be a

good thing but quite often people are left for 3 months and longer. That

is no bloody good. And by the way the world is getting away form RAI not

going to.

[Guest guest]

You are right. If we could be monitored weekly after RAI that might be a

good thing but quite often people are left for 3 months and longer. That

is no bloody good. And by the way the world is getting away form RAI not

going to.

[Guest guest]

,

Why wouldn't we beable to sue? Is this something similar to the government

removing the right to sue drug companies and drs. when a child is damaged or

dies because of a vaccine and we have no right to sue the dr. or the drug

company?

If so, this is so very wrong

Jody

_________________________________________________________________________

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

Share information about yourself, create your own public profile at

http://profiles.msn.com.

[Guest guest]

Hi -

There's also standard of care. If any of the doctors go outside of it and

something goes wrong with the patient,

they're open to a big lawsuit. All of the medical lawsuits in the U.S. have

made doctors reluctant to practice any

way outside of the norm (add that to having to get everything they do OK'd by an

HMO). They keep themselves covered

or their lives can be ruined.

Unfortunately, RAI is the standard of care in the U.S. so even if something does

go wrong with a patient after RAI,

a lawsuit isn't possible. In the future, even if they find out that RAI is a

terrible thing to do to people, we

wouldn't be able to sue.

Take care,

Hearn wrote:

>

> , Doctors can't possibly make the connection. Their training has

> put blinders on them and made them followers. It's not they can't think

> for themselves; it's just that they cannot operate outside their

> political system and most of them have too much of themselves invested

> in that system.

>

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

> 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 agree also, I was on ATDs for 5-1/2 yrs. 3 on TAP and 2-1/2 on PTU, which

I was put on due to my pregnancy. I have TED, and my eyes look good, my

facial features have changed, but who is to say that it is the GD, the

weight or age! LOL! I will be 44 next month. Most of the time on the PTU

my dose was 50 mg. a day, that is all and started that sometime during the

middle of my pregnancy. I've been in remission since July, maybe before

because I hadn't been to the doctors for a while.

Debbie

----------

>

>To: <graves_supportegroups>

>Subject: Re: Jody, and all RAI

>Date: Wed, Sep 20, 2000, 10:33 AM

>

> I agree. I also thought I had seen a suggestion in literature that two

> years on ATDs is not uncommon. I have been on PTU since 1998 with no side

> effects.

>

> Elaine

>

> ----- Original Message -----

>

>

>

>> Fay:

>>

>> I am retroactively dedicating the cookies I had this morning to you.

>>

>> I have been told by 3 different endos that research shows the longer you

>> are on ATDs the better chance of remission. 12 months is not long enough.

>> I'm on my 10th month of PTU, on a very low dosage, and I'm happy to stick

>> with it.

>>

>

>

>

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

> 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 agree also, I was on ATDs for 5-1/2 yrs. 3 on TAP and 2-1/2 on PTU, which

I was put on due to my pregnancy. I have TED, and my eyes look good, my

facial features have changed, but who is to say that it is the GD, the

weight or age! LOL! I will be 44 next month. Most of the time on the PTU

my dose was 50 mg. a day, that is all and started that sometime during the

middle of my pregnancy. I've been in remission since July, maybe before

because I hadn't been to the doctors for a while.

Debbie

----------

>

>To: <graves_supportegroups>

>Subject: Re: Jody, and all RAI

>Date: Wed, Sep 20, 2000, 10:33 AM

>

> I agree. I also thought I had seen a suggestion in literature that two

> years on ATDs is not uncommon. I have been on PTU since 1998 with no side

> effects.

>

> Elaine

>

> ----- Original Message -----

>

>

>

>> Fay:

>>

>> I am retroactively dedicating the cookies I had this morning to you.

>>

>> I have been told by 3 different endos that research shows the longer you

>> are on ATDs the better chance of remission. 12 months is not long enough.

>> I'm on my 10th month of PTU, on a very low dosage, and I'm happy to stick

>> with it.

>>

>

>

>

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

> 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]

, Doctors can't possibly make the connection. Their training has

put blinders on them and made them followers. It's not they can't think

for themselves; it's just that they cannot operate outside their

political system and most of them have too much of themselves invested

in that system.

[Guest guest]

> Hi -

>

> Many young doctors honestly think that RAI is safe and the way to

go in the U.S. They have it pumped into their

> heads in medical school (my husband did too, that's why he

encouraged me to have it done 13 years ago-Boy! Did he

> change his mind!). Unfortunately, this is primarily a disease of

women and I think that medicine has historically

> looked for quick fixes without really examining long-term

consequences. Just remember all those hysterectomies in

> the 70s and early 80s. They'd never dream of doing those now for

the same complaints that they did then. RAI is,

> hopefully, headed the same way.

>

> I don't really know what the endos think after practicing for years

and having many patients that don't do well

> after RAI. Seems to me that they'd start seeing a connection. All

of us need to remember too, that other things

> are considered in addition to the best interests of the patient.

Cost and ease of treatment are also added into the

> mix. Most patients aren't told that and assume that the doctor is

thinking in their best interests only.

>

> Take care,

>

>

Hi -

Many young doctors honestly think that RAI is safe and the way to

go in the U.S. They have it pumped into their heads in medical

school (my husband did too, that's why he encouraged me to have it

done 13 years ago-Boy! Did he change his mind!). Unfortunately,

this is primarily a disease of women and I think that medicine has

historically looked for quick fixes without really examining long-

term consequences. Just remember all those hysterectomies in the

70s and early 80s. They'd never dream of doing those now for the

same complaints that they did then. RAI is, hopefully, headed the

same way.

I don't really know what the endos think after practicing for years

and having many patients that don't do well after RAI. Seems to me

that they'd start seeing a connection. All of us need to remember

too, that other things are considered in addition to the best

interests of the patient. Cost and ease of treatment are also added

into the mix. Most patients aren't told that and assume that the

doctor is thinking in their best interests only.

Take care,

,

I do accept that there may be, as you indicate, some young doctors

who honestly think that RAI is safe because they have been taught so.

But even before having their licenses, docs are literally bombed with

medical " literature " , and RAI as well as other types of

radiation

procedures come out frequently amongst the medical news. Thus, they

can update and come to conclusions. And they are committed to do so

because –as you also say- it is not the first time in the History

of

Medicine that a " medical therapy " which was previously

considered

safe has been declared quackery or not helpful –as the least-

You say : <<<I don't really know what the endos think after

practicing for years and having many patients that don't do well

after RAI. Seems to me that they'd start seeing a connection >>>

I also don't know, and I wonder if they even think anything!...

It hurts me to read sometimes in medical papers that

" hypothyroidism

is desirable and sought, so better prescribing RAI in excess to reach

that point " . How come?. How can it be desirable a chronic disease

that counts over 300 (three hundred) symptoms and leaves the person

feeling miserable for the remaining of life, and depending on pills

and doctors forever?.

How about this long list of symptoms can be released to the " all

in

your head " sentence when the patient complaints?.

The key, as you perfectly indicate, is that the way to go is cost and

the ease of treatment. Specially cost!, as ease of treatment can be

questioned when we realize that this treatment solves nothing and

brings serious problems instead. It's easy, yes, only swallowing

a

pill. But under this point of view they could also start cutting legs

of those affected by rheumatoid arthritis…

We come to the hottest point: $$$$ and when and where it happens,

this is not good for sufferers in the first place neither for docs in

the second place. The only winners are insurance companies and

laboratories. And ironically, the one who pays is not obtaining what

is trying to " buy " and has, in addition, to pay for the consequences

as well.

Would you like to know which is the SECOND most prescribed drug in

the US (supposedly in the world too) with more than 2.8 Billion US

Prescriptions in 1999,

according to data courtesy of IMS Health:

Follow this link: http://www.rxlist.com/top200.htm

If you scroll down, you'll see other l-thyroxine drugs and if you

still want to surf deeper, you'll check out that following brand

names (same drug, l-thyroxine) are manufactured by Knoll and/or its

subsidiaries:

Syntroid

Eltroxin

Levotabs

Levothroid

Levoxyl

Levo-T

L-Thyroxine

Couldn't trace who manufactures Euthyrox, Levoid and Levoxine.

And Knoll also manufactures thyroid blockers.

It seems that they control the 'thyroid market'... but thyroid

blockers are used for some months, maybe some years.

Consequently l-thyroxine is much more convenient!. [sarcasm mode

on here]

Fortunately information is available in the internet for anyone

interested in researching.

People are everyday more and more educated on health issues, and make

more informed decisions.

Hopefully things will change!.

Regards,

A.

[Guest guest]

> P.S. I finally asked him why RAI isn't the first option in many

other

> developed countries. His answer: Beats me. Many other countries are

> starting to use RAI more frequently though in Japan, for example,

the

> rate's likely to stay really low since radiation is a dirty word

there

> thanks to the atomic bomb.

I see... that reminds me of when the WHO (World Health Organisation)

dared to say when Chernobil disaster happened, that people in

Chenobil complained because they were paranoid on radiation...

Of course, the WHO had to admit in April last that yet 50.000 new

cases of thyroid cancer would happen in the area (see this link

http://www.guardianunlimited.co.uk/international/story/0,3604,214128,0

0.html)

Not the unique thing they had to admit!.

Well, what your doc told you is not accurated. Statistics are

available in the web, for everybody to see.

But, I admit it is a 'convenient' reply on a hot topic.

He would rather inform about the supposed benefits of having RAI.

As you see, I'm not very fond or radioactive iodine. How could I?.

Best luck.

A.

[Guest guest]

Hi ,

> No real argument here. But many or most U.S. doctors concentrate on U.S.

literature. And most of the major

> medical journals here essentially espouse RAI. There are a few articles

critical of RAI but the vast majority

> don't find any problems with it.

> Although medical students have access to journals, they are responsible for

material from texts (which is older

> than that in the journals). Most don't keep up on the literature unless their

medical professors are teaching it

> (they are already studying very hard). When they get into residency, however,

the literature is current. But,

> again, it's like you can pick and choose what you believe about RAI because

there're so many differing conclusions

> in the studies.

The problem with RAI is that most of the symptoms can't directly be attributed

with it if that is the cause. They

are pretty nebulous and often take years to occur. Hence, many of them are

attributed to something else. I find it

astounding, however, that if a patient has no thyroid and has symptoms of

hypothyroidism, that doctors wouldn't look

there first. But they usually don't because they rely so heavily on those

darned blood tests.

I know most of my problems can be attributed to RAI and subsequent

hypothyroidism, but even my endo (who I think is

great) will say that not all of my symptoms are probably from my thyroid/RAI.

But I have a hard time trusting that

opinion when so many of the things that I was told were autoimmune turned out to

be thyroid related.

Take care,

>

>

> ,

>

> I do accept that there may be, as you indicate, some young doctors

> who honestly think that RAI is safe because they have been taught so.

>

> But even before having their licenses, docs are literally bombed with

> medical " literature " , and RAI as well as other types of

> radiation

> procedures come out frequently amongst the medical news. Thus, they

> can update and come to conclusions. And they are committed to do so

> because –as you also say- it is not the first time in the History

> of

> Medicine that a " medical therapy " which was previously

> considered

> safe has been declared quackery or not helpful –as the least-

>

> You say : <<<I don't really know what the endos think after

> practicing for years and having many patients that don't do well

> after RAI. Seems to me that they'd start seeing a connection >>>

>

> I also don't know, and I wonder if they even think anything!...

> It hurts me to read sometimes in medical papers that

> " hypothyroidism

> is desirable and sought, so better prescribing RAI in excess to reach

> that point " . How come?. How can it be desirable a chronic disease

> that counts over 300 (three hundred) symptoms and leaves the person

> feeling miserable for the remaining of life, and depending on pills

> and doctors forever?.

>

> How about this long list of symptoms can be released to the " all

> in

> your head " sentence when the patient complaints?.

>

> The key, as you perfectly indicate, is that the way to go is cost and

> the ease of treatment. Specially cost!, as ease of treatment can be

> questioned when we realize that this treatment solves nothing and

> brings serious problems instead. It's easy, yes, only swallowing

> a

> pill. But under this point of view they could also start cutting legs

> of those affected by rheumatoid arthritis…

>

> We come to the hottest point: $$$$ and when and where it happens,

> this is not good for sufferers in the first place neither for docs in

> the second place. The only winners are insurance companies and

> laboratories. And ironically, the one who pays is not obtaining what

> is trying to " buy " and has, in addition, to pay for the consequences

> as well.

>

> Would you like to know which is the SECOND most prescribed drug in

> the US (supposedly in the world too) with more than 2.8 Billion US

> Prescriptions in 1999,

> according to data courtesy of IMS Health:

> Follow this link: http://www.rxlist.com/top200.htm

>

> If you scroll down, you'll see other l-thyroxine drugs and if you

> still want to surf deeper, you'll check out that following brand

> names (same drug, l-thyroxine) are manufactured by Knoll and/or its

> subsidiaries:

> Syntroid

> Eltroxin

> Levotabs

> Levothroid

> Levoxyl

> Levo-T

> L-Thyroxine

>

> Couldn't trace who manufactures Euthyrox, Levoid and Levoxine.

>

> And Knoll also manufactures thyroid blockers.

> It seems that they control the 'thyroid market'... but thyroid

> blockers are used for some months, maybe some years.

> Consequently l-thyroxine is much more convenient!. [sarcasm mode

> on here]

>

> Fortunately information is available in the internet for anyone

> interested in researching.

>

> People are everyday more and more educated on health issues, and make

> more informed decisions.

>

> Hopefully things will change!.

>

> Regards,

>

> A.

>

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

> 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 Jody-

I should have been more clear. I meant we wouldn't be able to sue our doctors.

If later they find that something was wrong about the way RAI was pushed or that

it was misrepresented, we probably

could sue the people in charge, whoever that is.

Take care,

Jody Spitale wrote:

>

> ,

> Why wouldn't we beable to sue? Is this something similar to the government

> removing the right to sue drug companies and drs. when a child is damaged or

> dies because of a vaccine and we have no right to sue the dr. or the drug

> company?

>

> If so, this is so very wrong

> Jody

> _________________________________________________________________________

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

>

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

> http://profiles.msn.com.

>

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

> 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]

Dear Elaine

Good on ya for sticking to you guns and not letting the endo 'get his way'. The

Drs sometimes forget the position of

power they have over the huge, life changing decisions

they ask us to make. Not easy at all.

Keep up the inspirational work!

Cheers

Caroline