Re: standard of care

[Guest guest]

,

My sister just went thru what the doc thinks was thyroiditis. Her labs came

back in normal range last time but because of my history he will keep a check

on her. (Her AB's were negative, but he thinks that may change.)

I had already told her to opt for the ultrasound if necessary. About RAIU,

he said that he feels that it is done way too often in diagnosis and is

unnecessary in most cases. I told her to keep him!

This guy is an internal medicine doctor who specializes in thyroid and is a

professor at Medical College of Virginia in Richmond, VA. (The same hospital

that is treating the poor man shot in Ashland by the maniac.) Hopefully, he

is teaching his students that the scan is not always necessary for diagnosis

of thyroid disorders!!!!!!

God bless,

[Guest guest]

,

My sister just went thru what the doc thinks was thyroiditis. Her labs came

back in normal range last time but because of my history he will keep a check

on her. (Her AB's were negative, but he thinks that may change.)

I had already told her to opt for the ultrasound if necessary. About RAIU,

he said that he feels that it is done way too often in diagnosis and is

unnecessary in most cases. I told her to keep him!

This guy is an internal medicine doctor who specializes in thyroid and is a

professor at Medical College of Virginia in Richmond, VA. (The same hospital

that is treating the poor man shot in Ashland by the maniac.) Hopefully, he

is teaching his students that the scan is not always necessary for diagnosis

of thyroid disorders!!!!!!

God bless,

[Guest guest]

,

My sister just went thru what the doc thinks was thyroiditis. Her labs came

back in normal range last time but because of my history he will keep a check

on her. (Her AB's were negative, but he thinks that may change.)

I had already told her to opt for the ultrasound if necessary. About RAIU,

he said that he feels that it is done way too often in diagnosis and is

unnecessary in most cases. I told her to keep him!

This guy is an internal medicine doctor who specializes in thyroid and is a

professor at Medical College of Virginia in Richmond, VA. (The same hospital

that is treating the poor man shot in Ashland by the maniac.) Hopefully, he

is teaching his students that the scan is not always necessary for diagnosis

of thyroid disorders!!!!!!

God bless,

[Guest guest]

Hi -

I hope things are changing. My husband was taught in medical school that

RAI is the best way to treat hyperthyroidism which is why I finally agreed

to it. It was pretty frightening when the doctor told me I'd die without it

but still I probably wouldn't have done it without the approval of my

husband. He thought it was no big deal.

He often diagnoses Graves' and tells these patients (he's an emergency

physician) all their options and what happened to me. He tells them what

they may be told about RAI when they go to a specialist about it and then

what their options really will be. So maybe we're making a little

difference.

My sister also has autoimmune thyroid disease but it's not causing any

problems so far other than a goiter (it's not thyroiditis). There is no way

under the sun that her doctor will be able to talk her into RAI if that

changes. The doctor wasn't able to talk her into RAIU either.

I'm so glad your sister has found someone good to take care of her. My endo

also doesn't practice standard of care when it comes to replacement hormone

(you should see my other doctors freak when they see my TSH of <0.01). He

treats each patient individually by what he thinks they need not because

he's scared they'll sue. It sounds like your sister has found a doctor that

practices like this. Too many doctors play it safe because they're

frightened about being sued.

Take care,

dx & RAI 1987 (at age 24)

> ,

>

> My sister just went thru what the doc thinks was thyroiditis. Her labs

came

> back in normal range last time but because of my history he will keep a

check

> on her. (Her AB's were negative, but he thinks that may change.)

>

> I had already told her to opt for the ultrasound if necessary. About

RAIU,

> he said that he feels that it is done way too often in diagnosis and is

> unnecessary in most cases. I told her to keep him!

>

> This guy is an internal medicine doctor who specializes in thyroid and is

a

> professor at Medical College of Virginia in Richmond, VA. (The same

hospital

> that is treating the poor man shot in Ashland by the maniac.) Hopefully,

he

> is teaching his students that the scan is not always necessary for

diagnosis

> of thyroid disorders!!!!!!

>

> God bless,

>

[Guest guest]

Hi -

I hope things are changing. My husband was taught in medical school that

RAI is the best way to treat hyperthyroidism which is why I finally agreed

to it. It was pretty frightening when the doctor told me I'd die without it

but still I probably wouldn't have done it without the approval of my

husband. He thought it was no big deal.

He often diagnoses Graves' and tells these patients (he's an emergency

physician) all their options and what happened to me. He tells them what

they may be told about RAI when they go to a specialist about it and then

what their options really will be. So maybe we're making a little

difference.

My sister also has autoimmune thyroid disease but it's not causing any

problems so far other than a goiter (it's not thyroiditis). There is no way

under the sun that her doctor will be able to talk her into RAI if that

changes. The doctor wasn't able to talk her into RAIU either.

I'm so glad your sister has found someone good to take care of her. My endo

also doesn't practice standard of care when it comes to replacement hormone

(you should see my other doctors freak when they see my TSH of <0.01). He

treats each patient individually by what he thinks they need not because

he's scared they'll sue. It sounds like your sister has found a doctor that

practices like this. Too many doctors play it safe because they're

frightened about being sued.

Take care,

dx & RAI 1987 (at age 24)

> ,

>

> My sister just went thru what the doc thinks was thyroiditis. Her labs

came

> back in normal range last time but because of my history he will keep a

check

> on her. (Her AB's were negative, but he thinks that may change.)

>

> I had already told her to opt for the ultrasound if necessary. About

RAIU,

> he said that he feels that it is done way too often in diagnosis and is

> unnecessary in most cases. I told her to keep him!

>

> This guy is an internal medicine doctor who specializes in thyroid and is

a

> professor at Medical College of Virginia in Richmond, VA. (The same

hospital

> that is treating the poor man shot in Ashland by the maniac.) Hopefully,

he

> is teaching his students that the scan is not always necessary for

diagnosis

> of thyroid disorders!!!!!!

>

> God bless,

>

[Guest guest]

Hi and -

Hi -

Thanks so much for the information about standard of care. This

explains why doctors are getting away with this sorry excuse for

medical " treatment. " In other words, " standard of care " essentially

means:

" This is the way we've done it for years, so there's no need to

bother with changing anything...... regardless of a rash

of 'anecdotal' evidence. "

Kinda like the small town I lived in for a while. Every fall,

spring, and summer they openly burned the wet, mildewed leaves and

yard waste, right in their yards. Just one diesel-fueled bonfire

would choke out an entire neighborhood for hours on end. This is

still happening there. When the city council (aldermen) and mayor

were contacted about this and told how the American Lung Association

condemns this practice, we were told that " This is the way we've

always done it here, and that's good enough for US. " This is

happening in the 21st century!! Morons!

This is why one or two people rocking the boat isn't going to do

much. This MUST be a prolonged group effort. And we already have a

major obstacle, being that Graves' patients are a relative minority

in the medical world, compared to other diseases.

It may seem like an epidemic from reading all the Graves' boards (and

I agree, neither can I stomach a couple of the underhanded forums out

there), but in the whole scheme of things, Graves' IS still rare. I

asked my daughter who is in customer service for a major health

insurance conglomerate, about how many of the calls she receives are

about Graves' diagnosis and care. In the last 4-1/2 years, she came

across ONE, and that was about 3 years ago...........

There was one co-worker of hers who developed Graves' as she had all

the outward symptoms, and my daughter referred her to me. The girl

got on ATDs, and is now pursuing her dream of being a long-haul truck

driver!

So we must fight extra hard to change this STANDARD OF CARE to

something more humane. Keep in mind that blood-letting, and

leech " therapy " was the " standard of care " for many years as well.

Thank God some people made changes to that.

And one other thought, nowdays they refer to the " head and neck

radiation treatments " of the 50's as ignorant and senseless. And is

a contributing factor in thyroid cancer in later years. NOW it is

considered senseless that they treated everything from acne to

enlarged thymus glands with radioactivity. What will be the

consensus, say 10 years from now, over RAIU and RAI?

Everytime a doctor tells me that such and such is the best treatment,

blah blah blah, I can't help but remember that they used to KNOW that

the earth was FLAT....... and Heaven help anyone back then who dared

to challenge THAT.

Thanks so much for helping us to understand what we're up against

with this " standard of care " obstacle. I don't think anyone is

holding a gun to the doctor's head with this standard of care crap,

so if a doc REALLY wants to provide quality health care to his or her

patients, perhaps every doctor should start questioning these

stale " answers " and give the patient the option of signing off any

future malpractice suits with a legal waiver.

Best Wishes,

- Ultra-Determined Spice

> I guess what I'm saying is that RAIU is the standard of care in the

workup

> for hyperthyroidism. Antibody tests, U/S and doppler aren't right

now.

> That doesn't mean that they shouldn't be. It's just going to take

a lot of

> work to change it.

>

> I started trying to make a change regarding RAI for young women 4

years ago.

> I can't tell you how dismayed I am when I hear it pushed as a 1st

or only

> choice of treatment for Graves'. Sometimes a patient that has

refused RAI

> (after it was heartily pushed on her/him) turns out to have only a

transient

> case of thyroiditis. RAI has become so prevalent that this

pushing, even in

> mild cases, isn't unusual. It's standard of care and very

difficult to

> change.

>

> Anyways, I can't even go to other sites anymore because I realize

that

> nothing has changed. Maybe it's gotten even worse. I can't

understand this

> because of all the advances that medical science has made in the

past few

> years. Why can't doctors and patients just wait a little while?

ATDs are

> good options or they wouldn't be FDA approved.

>

> Take care,

>

>

> dx & RAI 1987 (at age 24)

[Guest guest]

Hi and -

Hi -

Thanks so much for the information about standard of care. This

explains why doctors are getting away with this sorry excuse for

medical " treatment. " In other words, " standard of care " essentially

means:

" This is the way we've done it for years, so there's no need to

bother with changing anything...... regardless of a rash

of 'anecdotal' evidence. "

Kinda like the small town I lived in for a while. Every fall,

spring, and summer they openly burned the wet, mildewed leaves and

yard waste, right in their yards. Just one diesel-fueled bonfire

would choke out an entire neighborhood for hours on end. This is

still happening there. When the city council (aldermen) and mayor

were contacted about this and told how the American Lung Association

condemns this practice, we were told that " This is the way we've

always done it here, and that's good enough for US. " This is

happening in the 21st century!! Morons!

This is why one or two people rocking the boat isn't going to do

much. This MUST be a prolonged group effort. And we already have a

major obstacle, being that Graves' patients are a relative minority

in the medical world, compared to other diseases.

It may seem like an epidemic from reading all the Graves' boards (and

I agree, neither can I stomach a couple of the underhanded forums out

there), but in the whole scheme of things, Graves' IS still rare. I

asked my daughter who is in customer service for a major health

insurance conglomerate, about how many of the calls she receives are

about Graves' diagnosis and care. In the last 4-1/2 years, she came

across ONE, and that was about 3 years ago...........

There was one co-worker of hers who developed Graves' as she had all

the outward symptoms, and my daughter referred her to me. The girl

got on ATDs, and is now pursuing her dream of being a long-haul truck

driver!

So we must fight extra hard to change this STANDARD OF CARE to

something more humane. Keep in mind that blood-letting, and

leech " therapy " was the " standard of care " for many years as well.

Thank God some people made changes to that.

And one other thought, nowdays they refer to the " head and neck

radiation treatments " of the 50's as ignorant and senseless. And is

a contributing factor in thyroid cancer in later years. NOW it is

considered senseless that they treated everything from acne to

enlarged thymus glands with radioactivity. What will be the

consensus, say 10 years from now, over RAIU and RAI?

Everytime a doctor tells me that such and such is the best treatment,

blah blah blah, I can't help but remember that they used to KNOW that

the earth was FLAT....... and Heaven help anyone back then who dared

to challenge THAT.

Thanks so much for helping us to understand what we're up against

with this " standard of care " obstacle. I don't think anyone is

holding a gun to the doctor's head with this standard of care crap,

so if a doc REALLY wants to provide quality health care to his or her

patients, perhaps every doctor should start questioning these

stale " answers " and give the patient the option of signing off any

future malpractice suits with a legal waiver.

Best Wishes,

- Ultra-Determined Spice

> I guess what I'm saying is that RAIU is the standard of care in the

workup

> for hyperthyroidism. Antibody tests, U/S and doppler aren't right

now.

> That doesn't mean that they shouldn't be. It's just going to take

a lot of

> work to change it.

>

> I started trying to make a change regarding RAI for young women 4

years ago.

> I can't tell you how dismayed I am when I hear it pushed as a 1st

or only

> choice of treatment for Graves'. Sometimes a patient that has

refused RAI

> (after it was heartily pushed on her/him) turns out to have only a

transient

> case of thyroiditis. RAI has become so prevalent that this

pushing, even in

> mild cases, isn't unusual. It's standard of care and very

difficult to

> change.

>

> Anyways, I can't even go to other sites anymore because I realize

that

> nothing has changed. Maybe it's gotten even worse. I can't

understand this

> because of all the advances that medical science has made in the

past few

> years. Why can't doctors and patients just wait a little while?

ATDs are

> good options or they wouldn't be FDA approved.

>

> Take care,

>

>

> dx & RAI 1987 (at age 24)

[Guest guest]

Hi -

You know, I'd like to hear the medical world's DEFINITION of " well-

supported in the literature. " Why aren't anecdotal cases, even if

such a large number of Graves' patients have similar experiences,

supported in their " literature " ? Why aren't testimonials in Graves'

forums considered well-supported literature?

Why do they have to keep dancing around the issue for " X " number of

years? Aren't any of these medical dictators in a position to make a

change that is IN THE PATIENTS' BEST INTEREST??

We're not asking for RAI to be banned. But if you don't want it, you

shouldn't be terrorized into it with lies about how the ATDs are

temporary/useless/toxic/ and RAI is harmless.

RAI is FORCED on us everywhere we turn. They continually badger us

while they wait for us to cave. As we grow more hyper waiting for

ATDs, or develop unnecessary reactions to overdosing us on ATDs while

not monitoring us ...... they PREY on us.

They get to the point of jeopardizing our health while they play

games with us, especially if we are raging....... otherwise why would

we be in their offices in the first place? How much " literature "

will it take to put a stop to this?

ATDs are dangled just out of our reach until we submit to an RAIU,

whether or not we really need a radioactive scan or uptake. How

much " literature " will it take to put a stop to that crap?

If they had a *pair* among the whole bunch of them, they would step

up to the plate and make it STANDARD OF CARE to LET THE PATIENT MAKE

AN INFORMED DECISION.

I'm getting more and more fed up with MEDICAL STATUS QUO, and will

type up all the well-supported literature it takes to change the

current state of affairs.

, I do appreciate knowing what obstacles are out there, and am

grateful to you for letting us know just what we're up against here.

Warmest wishes,

Chris

--------

> Hi Chris-

>

> OOOOOOh!!!! I forgot about the blood-letting and leech therapy

that used to

> be standard of care:-) That's an even better example than how

women used to

> have babies.

>

> Scary isn't it? That ol' leech therapy is coming back. Just

kidding!

> They're only using them for coagulated blood. Not for everything

else under

> the sun like they used to.

>

> Keep being determined!!!!

>

> Take care,

>

>

>

>

> > Hi and -

> >

> > Hi -

> >

> > Thanks so much for the information about standard of care. This

> > explains why doctors are getting away with this sorry excuse for

> > medical " treatment. " In other words, " standard of care "

essentially

> > means:

> >

> > " This is the way we've done it for years, so there's no need to

> > bother with changing anything...... regardless of a rash

> > of 'anecdotal' evidence. "

> >

> > Kinda like the small town I lived in for a while. Every fall,

> > spring, and summer they openly burned the wet, mildewed leaves and

> > yard waste, right in their yards. Just one diesel-fueled bonfire

> > would choke out an entire neighborhood for hours on end. This is

> > still happening there. When the city council (aldermen) and mayor

> > were contacted about this and told how the American Lung

Association

> > condemns this practice, we were told that " This is the way we've

> > always done it here, and that's good enough for US. " This is

> > happening in the 21st century!! Morons!

> >

> > This is why one or two people rocking the boat isn't going to do

> > much. This MUST be a prolonged group effort. And we already

have a

> > major obstacle, being that Graves' patients are a relative

minority

> > in the medical world, compared to other diseases.

> >

> > It may seem like an epidemic from reading all the Graves' boards

(and

> > I agree, neither can I stomach a couple of the underhanded forums

out

> > there), but in the whole scheme of things, Graves' IS still

rare. I

> > asked my daughter who is in customer service for a major health

> > insurance conglomerate, about how many of the calls she receives

are

> > about Graves' diagnosis and care. In the last 4-1/2 years, she

came

> > across ONE, and that was about 3 years ago...........

> >

> > There was one co-worker of hers who developed Graves' as she had

all

> > the outward symptoms, and my daughter referred her to me. The

girl

> > got on ATDs, and is now pursuing her dream of being a long-haul

truck

> > driver!

> >

> > So we must fight extra hard to change this STANDARD OF CARE to

> > something more humane. Keep in mind that blood-letting, and

> > leech " therapy " was the " standard of care " for many years as well.

> > Thank God some people made changes to that.

> >

> > And one other thought, nowdays they refer to the " head and neck

> > radiation treatments " of the 50's as ignorant and senseless. And

is

> > a contributing factor in thyroid cancer in later years. NOW it

is

> > considered senseless that they treated everything from acne to

> > enlarged thymus glands with radioactivity. What will be the

> > consensus, say 10 years from now, over RAIU and RAI?

> >

> > Everytime a doctor tells me that such and such is the best

treatment,

> > blah blah blah, I can't help but remember that they used to KNOW

that

> > the earth was FLAT....... and Heaven help anyone back then who

dared

> > to challenge THAT.

> >

> > Thanks so much for helping us to understand what we're up against

> > with this " standard of care " obstacle. I don't think anyone is

> > holding a gun to the doctor's head with this standard of care

crap,

> > so if a doc REALLY wants to provide quality health care to his or

her

> > patients, perhaps every doctor should start questioning these

> > stale " answers " and give the patient the option of signing off any

> > future malpractice suits with a legal waiver.

> >

> > Best Wishes,

> > - Ultra-Determined Spice