frustrated

[Guest guest]

Jody,

I think we're on the same mental continuum! As I fell asleep last night, I

was thinking that the first page would be " top 10 list " format--but that we

would all need the back-up of more complete explanations on pg. 2 (or 3)..

I'll get to work!

Terry

>

> Reply-To: graves_support

> Date: Sun, 10 Feb 2002 12:48:30 -0500

> To: graves_support

> Subject: Re: Frustrated

>

> Hi Terry,

> What wonderful ideas you have! The symptoms list has been invaluable for

> the new people, I now keep it on my desk top to send them directly.

>

> I think this idea is just as wonderful. I am thinking on what I would like

> to see on it too. I know one of them would be

>

> It is a MYTH that hypO is easier to treat.

>

> And the one about graves is an immune system disease NOT a thyroid disease

> is also a must. As for any others, most will probably be the same as you

> have listed and what Elaine has done.

>

> I do have one suggestion though. If this is going to be used with doctors,

> it is going to become another effort by us to train doctors into a different

> mode of treating. I agree, to catch their eyes, the list must be short and

> to the point...but...I think each point needs to be explained as shortly as

> possible, so *maybe* having a second or second and third page attachment to

> it with explanations they can't argue with would be a good idea. Even if

> they don't read those in front of patients, hopefully they will take the

> time and read it when we are out of sight. I think for many, reading our

> reasons would be like the 'curiosity killed the cat, satisfaction brought it

> back' kind of thing.

>

> The danger with one liners only is that they can then argue every point made

> on them with 2/3 sentences to refute everything we come up with. With

> longer explanations (2/3 sentences of our own) on a separate page would stop

> them in their tracks.

>

> But this is just my take on it. I know that, even though my doctor does not

> do RAI on anyone anymore, I would take it in to her to share with her

> colleagues anyhow

>

> I'd be happy to work on this with you, as if you really need my help but

> if you do, let me know.

>

> Thank you so much for this idea, it is truly excellent! And Elaine... maybe

> another graves book on some of the things we have in the archives, like this

> list, the extended symptoms list, Do's and Don'ts for graves, for the eye

> disease...some simple ideas? Maybe that is really reaching on my part, but

> I do love your books

> TTYL

> Jody

>

>

>

> _________________________________________________________________

> MSN Photos is the easiest way to share and print your photos:

> http://photos.msn.com/support/worldwide.aspx

>

>

>

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

> 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.

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

> DISCLAIMER

>

> Advertisments placed on this yahoo groups list does not have the endorsement

> of

> the listowner. I have no input as to what ads are attached to emails.

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

> --------

>

>

[Guest guest]

Jody,

I think we're on the same mental continuum! As I fell asleep last night, I

was thinking that the first page would be " top 10 list " format--but that we

would all need the back-up of more complete explanations on pg. 2 (or 3)..

I'll get to work!

Terry

>

> Reply-To: graves_support

> Date: Sun, 10 Feb 2002 12:48:30 -0500

> To: graves_support

> Subject: Re: Frustrated

>

> Hi Terry,

> What wonderful ideas you have! The symptoms list has been invaluable for

> the new people, I now keep it on my desk top to send them directly.

>

> I think this idea is just as wonderful. I am thinking on what I would like

> to see on it too. I know one of them would be

>

> It is a MYTH that hypO is easier to treat.

>

> And the one about graves is an immune system disease NOT a thyroid disease

> is also a must. As for any others, most will probably be the same as you

> have listed and what Elaine has done.

>

> I do have one suggestion though. If this is going to be used with doctors,

> it is going to become another effort by us to train doctors into a different

> mode of treating. I agree, to catch their eyes, the list must be short and

> to the point...but...I think each point needs to be explained as shortly as

> possible, so *maybe* having a second or second and third page attachment to

> it with explanations they can't argue with would be a good idea. Even if

> they don't read those in front of patients, hopefully they will take the

> time and read it when we are out of sight. I think for many, reading our

> reasons would be like the 'curiosity killed the cat, satisfaction brought it

> back' kind of thing.

>

> The danger with one liners only is that they can then argue every point made

> on them with 2/3 sentences to refute everything we come up with. With

> longer explanations (2/3 sentences of our own) on a separate page would stop

> them in their tracks.

>

> But this is just my take on it. I know that, even though my doctor does not

> do RAI on anyone anymore, I would take it in to her to share with her

> colleagues anyhow

>

> I'd be happy to work on this with you, as if you really need my help but

> if you do, let me know.

>

> Thank you so much for this idea, it is truly excellent! And Elaine... maybe

> another graves book on some of the things we have in the archives, like this

> list, the extended symptoms list, Do's and Don'ts for graves, for the eye

> disease...some simple ideas? Maybe that is really reaching on my part, but

> I do love your books

> TTYL

> Jody

>

>

>

> _________________________________________________________________

> MSN Photos is the easiest way to share and print your photos:

> http://photos.msn.com/support/worldwide.aspx

>

>

>

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

> 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.

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

> DISCLAIMER

>

> Advertisments placed on this yahoo groups list does not have the endorsement

> of

> the listowner. I have no input as to what ads are attached to emails.

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

> --------

>

>

[Guest guest]

Jody,

I think we're on the same mental continuum! As I fell asleep last night, I

was thinking that the first page would be " top 10 list " format--but that we

would all need the back-up of more complete explanations on pg. 2 (or 3)..

I'll get to work!

Terry

>

> Reply-To: graves_support

> Date: Sun, 10 Feb 2002 12:48:30 -0500

> To: graves_support

> Subject: Re: Frustrated

>

> Hi Terry,

> What wonderful ideas you have! The symptoms list has been invaluable for

> the new people, I now keep it on my desk top to send them directly.

>

> I think this idea is just as wonderful. I am thinking on what I would like

> to see on it too. I know one of them would be

>

> It is a MYTH that hypO is easier to treat.

>

> And the one about graves is an immune system disease NOT a thyroid disease

> is also a must. As for any others, most will probably be the same as you

> have listed and what Elaine has done.

>

> I do have one suggestion though. If this is going to be used with doctors,

> it is going to become another effort by us to train doctors into a different

> mode of treating. I agree, to catch their eyes, the list must be short and

> to the point...but...I think each point needs to be explained as shortly as

> possible, so *maybe* having a second or second and third page attachment to

> it with explanations they can't argue with would be a good idea. Even if

> they don't read those in front of patients, hopefully they will take the

> time and read it when we are out of sight. I think for many, reading our

> reasons would be like the 'curiosity killed the cat, satisfaction brought it

> back' kind of thing.

>

> The danger with one liners only is that they can then argue every point made

> on them with 2/3 sentences to refute everything we come up with. With

> longer explanations (2/3 sentences of our own) on a separate page would stop

> them in their tracks.

>

> But this is just my take on it. I know that, even though my doctor does not

> do RAI on anyone anymore, I would take it in to her to share with her

> colleagues anyhow

>

> I'd be happy to work on this with you, as if you really need my help but

> if you do, let me know.

>

> Thank you so much for this idea, it is truly excellent! And Elaine... maybe

> another graves book on some of the things we have in the archives, like this

> list, the extended symptoms list, Do's and Don'ts for graves, for the eye

> disease...some simple ideas? Maybe that is really reaching on my part, but

> I do love your books

> TTYL

> Jody

>

>

>

> _________________________________________________________________

> MSN Photos is the easiest way to share and print your photos:

> http://photos.msn.com/support/worldwide.aspx

>

>

>

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

> 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.

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

> DISCLAIMER

>

> Advertisments placed on this yahoo groups list does not have the endorsement

> of

> the listowner. I have no input as to what ads are attached to emails.

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

> --------

>

>

[Guest guest]

Terry,

Isn't it neat how all of our great minds think alike ;-)

You know, I *almost* feel sorry for our doctors <grin>

Jody

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp.

[Guest guest]

Terry,

Isn't it neat how all of our great minds think alike ;-)

You know, I *almost* feel sorry for our doctors <grin>

Jody

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp.

[Guest guest]

Terry,

Isn't it neat how all of our great minds think alike ;-)

You know, I *almost* feel sorry for our doctors <grin>

Jody

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp.

[Guest guest]

Terry -

I've got an article that talks about some of these very things that Elaine

mentions. It might be good for a reference, if you think we should have it.

It's actually a very interesting study - and a little scary, too. So far the

3 docs I've seen (1 endo, 1 D.O., and 1 M.D.) had never heard of it, but the

D.O. was the first and only to admit that RAI has a lot of risk factors

associated with it and he wouldn't recommend it. If he wasn't so hard to get

into, I'd go back and see him to do my monitoring!

The article is called " Cancer Mortality Following Treatment for Adult

Hyperthyroidism " in the Journal of the American Medical Association (JAMA)

July 22, 1998 v280 n4 p347-355. It's a study done on 35,000 hyperthyroid

patients between 1946 - 1964. It does a comparison of the 3 standard

treatments for GD. I downloaded it from my local library - it's on their

magazine index.

Re: Frustrated

>I would add that

>RAI is absorbed, in smaller amounts, by other organs besides the thyroid,

>including breast tissue, the genitals, pancreas, and the gastric mucosa.

RAI

>causes either cell death or DNA mutations to any cells unfortunate enough

to

>be at its path length.

>

>RAI has a short half-life, meaning half of the dose is diminished in about

8

>days. Then half of this dose is diminished in another 8 days. I

contaminated

>the entire nuclear chemistry department of the lab I worked in after being

>ablated, and I continued to have measureable amounts of radioiodine in my

>urine for 4 weeks. To say that the dose is quickly depleted is simply not

>true. In the meantime we're exposing our families, friends and coworkers to

>radioiodine.

>

>Long term studies show a small but significant increase in certain cancers,

>including those of the thyroid gland and small bowel, after RAI. Although

the

>follicular cells of our thyroid are destroyed, we continue to have a

basement

>membrane of other cells that can become cancerous.

>

>There is a small but significant increase in damage to the parathyroid

glands

>after radioiodine. A number of people experience hypoparathyroidism.

>

>After RAI, increases in antibody titers affect lab tests, making

>hypothyroidism extremely difficult to treat. Patients who had RAI have an

>increased risk for developing fibromyalgia, which is also related to

>hypothyroidism. I suspect that many of us are kept hypothyroid because of a

>poor understanding of lab test interpretation.

>

>These are off the top of my head, Terry, so I'm sure I can come up with

more.

>

>

>

>

[Guest guest]

Terry -

I've got an article that talks about some of these very things that Elaine

mentions. It might be good for a reference, if you think we should have it.

It's actually a very interesting study - and a little scary, too. So far the

3 docs I've seen (1 endo, 1 D.O., and 1 M.D.) had never heard of it, but the

D.O. was the first and only to admit that RAI has a lot of risk factors

associated with it and he wouldn't recommend it. If he wasn't so hard to get

into, I'd go back and see him to do my monitoring!

The article is called " Cancer Mortality Following Treatment for Adult

Hyperthyroidism " in the Journal of the American Medical Association (JAMA)

July 22, 1998 v280 n4 p347-355. It's a study done on 35,000 hyperthyroid

patients between 1946 - 1964. It does a comparison of the 3 standard

treatments for GD. I downloaded it from my local library - it's on their

magazine index.

Re: Frustrated

>I would add that

>RAI is absorbed, in smaller amounts, by other organs besides the thyroid,

>including breast tissue, the genitals, pancreas, and the gastric mucosa.

RAI

>causes either cell death or DNA mutations to any cells unfortunate enough

to

>be at its path length.

>

>RAI has a short half-life, meaning half of the dose is diminished in about

8

>days. Then half of this dose is diminished in another 8 days. I

contaminated

>the entire nuclear chemistry department of the lab I worked in after being

>ablated, and I continued to have measureable amounts of radioiodine in my

>urine for 4 weeks. To say that the dose is quickly depleted is simply not

>true. In the meantime we're exposing our families, friends and coworkers to

>radioiodine.

>

>Long term studies show a small but significant increase in certain cancers,

>including those of the thyroid gland and small bowel, after RAI. Although

the

>follicular cells of our thyroid are destroyed, we continue to have a

basement

>membrane of other cells that can become cancerous.

>

>There is a small but significant increase in damage to the parathyroid

glands

>after radioiodine. A number of people experience hypoparathyroidism.

>

>After RAI, increases in antibody titers affect lab tests, making

>hypothyroidism extremely difficult to treat. Patients who had RAI have an

>increased risk for developing fibromyalgia, which is also related to

>hypothyroidism. I suspect that many of us are kept hypothyroid because of a

>poor understanding of lab test interpretation.

>

>These are off the top of my head, Terry, so I'm sure I can come up with

more.

>

>

>

>

[Guest guest]

Terry -

I've got an article that talks about some of these very things that Elaine

mentions. It might be good for a reference, if you think we should have it.

It's actually a very interesting study - and a little scary, too. So far the

3 docs I've seen (1 endo, 1 D.O., and 1 M.D.) had never heard of it, but the

D.O. was the first and only to admit that RAI has a lot of risk factors

associated with it and he wouldn't recommend it. If he wasn't so hard to get

into, I'd go back and see him to do my monitoring!

The article is called " Cancer Mortality Following Treatment for Adult

Hyperthyroidism " in the Journal of the American Medical Association (JAMA)

July 22, 1998 v280 n4 p347-355. It's a study done on 35,000 hyperthyroid

patients between 1946 - 1964. It does a comparison of the 3 standard

treatments for GD. I downloaded it from my local library - it's on their

magazine index.

Re: Frustrated

>I would add that

>RAI is absorbed, in smaller amounts, by other organs besides the thyroid,

>including breast tissue, the genitals, pancreas, and the gastric mucosa.

RAI

>causes either cell death or DNA mutations to any cells unfortunate enough

to

>be at its path length.

>

>RAI has a short half-life, meaning half of the dose is diminished in about

8

>days. Then half of this dose is diminished in another 8 days. I

contaminated

>the entire nuclear chemistry department of the lab I worked in after being

>ablated, and I continued to have measureable amounts of radioiodine in my

>urine for 4 weeks. To say that the dose is quickly depleted is simply not

>true. In the meantime we're exposing our families, friends and coworkers to

>radioiodine.

>

>Long term studies show a small but significant increase in certain cancers,

>including those of the thyroid gland and small bowel, after RAI. Although

the

>follicular cells of our thyroid are destroyed, we continue to have a

basement

>membrane of other cells that can become cancerous.

>

>There is a small but significant increase in damage to the parathyroid

glands

>after radioiodine. A number of people experience hypoparathyroidism.

>

>After RAI, increases in antibody titers affect lab tests, making

>hypothyroidism extremely difficult to treat. Patients who had RAI have an

>increased risk for developing fibromyalgia, which is also related to

>hypothyroidism. I suspect that many of us are kept hypothyroid because of a

>poor understanding of lab test interpretation.

>

>These are off the top of my head, Terry, so I'm sure I can come up with

more.

>

>

>

>

[Guest guest]

I think one liners are a great idea, but agree that doctors are likely to

dismiss them.

What about footnotes? Maybe if we all put our heads together we can come up

with lots of " thoroughly reputable " references that docs will recognise? I

have noticed that if I say I use the internet to get information, I am

dismissed out of hand; whereas if I say I have been reading Werner and

Ingbar's The Thyroid and other medical texts, I am asked if I am a nurse or

have any medical training (to which I have in the past replied, no, but it's

not rocket science is it?! - but I was very hyper then!).

Anyway, the five main things that assisted my decision to refuse RAI were:

1) I had mild eye involvement and found that RAI generally made it worse.

2) I am still of child bearing age and have no kids yet - there seemed to be

at least some controversy about the safety of RAI in this regard, even

though the doctors I spoke to assured me RAI was " the best course of action

if you are considering having children " - I had read otherwise and did not

appreciate being mislead.

3) The statistics showing slightly elevated incidences of cancer in people

who have had RAI.

4) I wanted to at least try for remission

5) Medicene seems to be moving quite fast these days with the genome thing

and all the advances made in treating HIV and AIDs - I REALLY didn't want to

have RAI and hear on the news the following week that scientists had

discovered the cure to GD, that I could not participate in because my

thyroid was dead - maybe I am dreaming there, but it helped me to delay RAI.

One of the things that has amazed me in this entire journey, is that when

you REALLY get down to the information with the more up to date doctors, I

have found that I have the same information as them, but we come to

different conclusions about treatment course. What they are saying often

doesn't seem to make sense in the light of what they know and I think this

has to do with " the of standard care " approach to medicine - where doctors

do what all the other doctors do, so that if anything goes wrong with the

treatment, they can say " well, I only did what any other doctor would have

done " . I sympathise, honestly I do, doctors face enormous responsibilities

in their work, but I do believe this butt covering culture is part of what

stops things changing for so long!

Ranting again

DAWN ROSE

>

>Reply-To: graves_support

>To: graves_support

>Subject: Re: Frustrated

>Date: Sun, 10 Feb 2002 12:48:30 -0500

>

>Hi Terry,

>What wonderful ideas you have! The symptoms list has been invaluable for

>the new people, I now keep it on my desk top to send them directly.

>

>I think this idea is just as wonderful. I am thinking on what I would like

>to see on it too. I know one of them would be

>

>It is a MYTH that hypO is easier to treat.

>

>And the one about graves is an immune system disease NOT a thyroid disease

>is also a must. As for any others, most will probably be the same as you

>have listed and what Elaine has done.

>

>I do have one suggestion though. If this is going to be used with doctors,

>it is going to become another effort by us to train doctors into a

>different

>mode of treating. I agree, to catch their eyes, the list must be short and

>to the point...but...I think each point needs to be explained as shortly as

>possible, so *maybe* having a second or second and third page attachment to

>it with explanations they can't argue with would be a good idea. Even if

>they don't read those in front of patients, hopefully they will take the

>time and read it when we are out of sight. I think for many, reading our

>reasons would be like the 'curiosity killed the cat, satisfaction brought

>it

>back' kind of thing.

>

>The danger with one liners only is that they can then argue every point

>made

>on them with 2/3 sentences to refute everything we come up with. With

>longer explanations (2/3 sentences of our own) on a separate page would

>stop

>them in their tracks.

>

>But this is just my take on it. I know that, even though my doctor does

>not

>do RAI on anyone anymore, I would take it in to her to share with her

>colleagues anyhow

>

>I'd be happy to work on this with you, as if you really need my help but

>if you do, let me know.

>

>Thank you so much for this idea, it is truly excellent! And Elaine...

>maybe

>another graves book on some of the things we have in the archives, like

>this

>list, the extended symptoms list, Do's and Don'ts for graves, for the eye

>disease...some simple ideas? Maybe that is really reaching on my part, but

>I do love your books

>TTYL

>Jody

>

>

>

>_________________________________________________________________

>MSN Photos is the easiest way to share and print your photos:

>http://photos.msn.com/support/worldwide.aspx

>

>

>

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

>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.

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

> DISCLAIMER

>

>Advertisments placed on this yahoo groups list does not have the

>endorsement of

>the listowner. I have no input as to what ads are attached to emails.

>-------------------------------------------------------------------------------\

-------

>

>

[Guest guest]

I think one liners are a great idea, but agree that doctors are likely to

dismiss them.

What about footnotes? Maybe if we all put our heads together we can come up

with lots of " thoroughly reputable " references that docs will recognise? I

have noticed that if I say I use the internet to get information, I am

dismissed out of hand; whereas if I say I have been reading Werner and

Ingbar's The Thyroid and other medical texts, I am asked if I am a nurse or

have any medical training (to which I have in the past replied, no, but it's

not rocket science is it?! - but I was very hyper then!).

Anyway, the five main things that assisted my decision to refuse RAI were:

1) I had mild eye involvement and found that RAI generally made it worse.

2) I am still of child bearing age and have no kids yet - there seemed to be

at least some controversy about the safety of RAI in this regard, even

though the doctors I spoke to assured me RAI was " the best course of action

if you are considering having children " - I had read otherwise and did not

appreciate being mislead.

3) The statistics showing slightly elevated incidences of cancer in people

who have had RAI.

4) I wanted to at least try for remission

5) Medicene seems to be moving quite fast these days with the genome thing

and all the advances made in treating HIV and AIDs - I REALLY didn't want to

have RAI and hear on the news the following week that scientists had

discovered the cure to GD, that I could not participate in because my

thyroid was dead - maybe I am dreaming there, but it helped me to delay RAI.

One of the things that has amazed me in this entire journey, is that when

you REALLY get down to the information with the more up to date doctors, I

have found that I have the same information as them, but we come to

different conclusions about treatment course. What they are saying often

doesn't seem to make sense in the light of what they know and I think this

has to do with " the of standard care " approach to medicine - where doctors

do what all the other doctors do, so that if anything goes wrong with the

treatment, they can say " well, I only did what any other doctor would have

done " . I sympathise, honestly I do, doctors face enormous responsibilities

in their work, but I do believe this butt covering culture is part of what

stops things changing for so long!

Ranting again

DAWN ROSE

>

>Reply-To: graves_support

>To: graves_support

>Subject: Re: Frustrated

>Date: Sun, 10 Feb 2002 12:48:30 -0500

>

>Hi Terry,

>What wonderful ideas you have! The symptoms list has been invaluable for

>the new people, I now keep it on my desk top to send them directly.

>

>I think this idea is just as wonderful. I am thinking on what I would like

>to see on it too. I know one of them would be

>

>It is a MYTH that hypO is easier to treat.

>

>And the one about graves is an immune system disease NOT a thyroid disease

>is also a must. As for any others, most will probably be the same as you

>have listed and what Elaine has done.

>

>I do have one suggestion though. If this is going to be used with doctors,

>it is going to become another effort by us to train doctors into a

>different

>mode of treating. I agree, to catch their eyes, the list must be short and

>to the point...but...I think each point needs to be explained as shortly as

>possible, so *maybe* having a second or second and third page attachment to

>it with explanations they can't argue with would be a good idea. Even if

>they don't read those in front of patients, hopefully they will take the

>time and read it when we are out of sight. I think for many, reading our

>reasons would be like the 'curiosity killed the cat, satisfaction brought

>it

>back' kind of thing.

>

>The danger with one liners only is that they can then argue every point

>made

>on them with 2/3 sentences to refute everything we come up with. With

>longer explanations (2/3 sentences of our own) on a separate page would

>stop

>them in their tracks.

>

>But this is just my take on it. I know that, even though my doctor does

>not

>do RAI on anyone anymore, I would take it in to her to share with her

>colleagues anyhow

>

>I'd be happy to work on this with you, as if you really need my help but

>if you do, let me know.

>

>Thank you so much for this idea, it is truly excellent! And Elaine...

>maybe

>another graves book on some of the things we have in the archives, like

>this

>list, the extended symptoms list, Do's and Don'ts for graves, for the eye

>disease...some simple ideas? Maybe that is really reaching on my part, but

>I do love your books

>TTYL

>Jody

>

>

>

>_________________________________________________________________

>MSN Photos is the easiest way to share and print your photos:

>http://photos.msn.com/support/worldwide.aspx

>

>

>

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

>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.

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

> DISCLAIMER

>

>Advertisments placed on this yahoo groups list does not have the

>endorsement of

>the listowner. I have no input as to what ads are attached to emails.

>-------------------------------------------------------------------------------\

-------

>

>

[Guest guest]

Dawn Rose,

Your number 5 reason

>>>5) Medicene seems to be moving quite fast these days with the genome

>>>thing and all the advances made in treating HIV and AIDs - I REALLY

>>>didn't want to have RAI and hear on the news the following week that

>>>scientists had discovered the cure to GD, that I could not participate in

>>>because my thyroid was dead - maybe I am dreaming there, but it helped me

>>>to delay RAI.<<<

is an excellent reason to not have RAI!!! I think this should be our number

1 reason for not having it...and it is an arguement that no reasonable

doctor can argue with!

Jody

_________________________________________________________________

Join the world’s largest e-mail service with MSN Hotmail.

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[Guest guest]

Hi Doris...I just got a copy from the library. I was researching GD in their

online magazine index, and this article came up and I printed it out from

there. I don't know if JAMA has a web site that allows you to download old

articles, like the NEJM does. I'll have to check it out. I've got mine in

print form, so if I can't find it online or you can't get it from a local

library, I could probably snail mail you a copy. Let me do a little checking

and see if it's available on line somewhere...I'll let you know what I find.

Re: Frustrated

>,

>Hi, is there any way I could get a copy of that article that was in JAMA?

>

>Thanks,

>Doris

>

>

>

>

[Guest guest]

Hi Doris...I just got a copy from the library. I was researching GD in their

online magazine index, and this article came up and I printed it out from

there. I don't know if JAMA has a web site that allows you to download old

articles, like the NEJM does. I'll have to check it out. I've got mine in

print form, so if I can't find it online or you can't get it from a local

library, I could probably snail mail you a copy. Let me do a little checking

and see if it's available on line somewhere...I'll let you know what I find.

Re: Frustrated

>,

>Hi, is there any way I could get a copy of that article that was in JAMA?

>

>Thanks,

>Doris

>

>

>

>

[Guest guest]

Hi Doris...I just got a copy from the library. I was researching GD in their

online magazine index, and this article came up and I printed it out from

there. I don't know if JAMA has a web site that allows you to download old

articles, like the NEJM does. I'll have to check it out. I've got mine in

print form, so if I can't find it online or you can't get it from a local

library, I could probably snail mail you a copy. Let me do a little checking

and see if it's available on line somewhere...I'll let you know what I find.

Re: Frustrated

>,

>Hi, is there any way I could get a copy of that article that was in JAMA?

>

>Thanks,

>Doris

>

>

>

>

[Guest guest]

I checked out a summary of the article here:

http://jama.ama-assn.org/issues/v280n4/abs/joc6995.html

<http://jama.ama-assn.org/issues/v280n4/abs/joc6995.html>

The summary, though, shows an increased risk of cancer mortality after

treatment with ATDs, not RAI. The RAI showed a slight increase in thyroid

cancer only, but they attributed that to the thyroid disease itself. Not

really what I wanted to hear.

Holly

[Guest guest]

I checked out a summary of the article here:

http://jama.ama-assn.org/issues/v280n4/abs/joc6995.html

<http://jama.ama-assn.org/issues/v280n4/abs/joc6995.html>

The summary, though, shows an increased risk of cancer mortality after

treatment with ATDs, not RAI. The RAI showed a slight increase in thyroid

cancer only, but they attributed that to the thyroid disease itself. Not

really what I wanted to hear.

Holly

[Guest guest]

I checked out a summary of the article here:

http://jama.ama-assn.org/issues/v280n4/abs/joc6995.html

<http://jama.ama-assn.org/issues/v280n4/abs/joc6995.html>

The summary, though, shows an increased risk of cancer mortality after

treatment with ATDs, not RAI. The RAI showed a slight increase in thyroid

cancer only, but they attributed that to the thyroid disease itself. Not

really what I wanted to hear.

Holly

[Guest guest]

You will find many conflicting things along these lines. But remember, the

lowest cancer

risk of all our choices is being in remission, or on the very lowest dose of

ATDs.

I also think one of my hypo symptoms is sitting at the computer and studying

stuff like

this with endless fascination, and not having the energy to get up and do other

things

like on a more normal day. So if you are still a bit hypo, think about

revisiting this

search later, when you are feeling better and can be more objective in your

findings.

Humm, that doesn't sound right...but maybe you can get my general idea.

Just know that the hypo part of this causes us to see things in a more depressed

light.

And this will pass.

-Pam-

" Sutherland, Holly " wrote:

> I checked out a summary of the article here:

> http://jama.ama-assn.org/issues/v280n4/abs/joc6995.html

> <http://jama.ama-assn.org/issues/v280n4/abs/joc6995.html>

>

> The summary, though, shows an increased risk of cancer mortality after

> treatment with ATDs, not RAI. The RAI showed a slight increase in thyroid

> cancer only, but they attributed that to the thyroid disease itself. Not

> really what I wanted to hear.

>

> Holly

>

>

>

>

[Guest guest]

You will find many conflicting things along these lines. But remember, the

lowest cancer

risk of all our choices is being in remission, or on the very lowest dose of

ATDs.

I also think one of my hypo symptoms is sitting at the computer and studying

stuff like

this with endless fascination, and not having the energy to get up and do other

things

like on a more normal day. So if you are still a bit hypo, think about

revisiting this

search later, when you are feeling better and can be more objective in your

findings.

Humm, that doesn't sound right...but maybe you can get my general idea.

Just know that the hypo part of this causes us to see things in a more depressed

light.

And this will pass.

-Pam-

" Sutherland, Holly " wrote:

> I checked out a summary of the article here:

> http://jama.ama-assn.org/issues/v280n4/abs/joc6995.html

> <http://jama.ama-assn.org/issues/v280n4/abs/joc6995.html>

>

> The summary, though, shows an increased risk of cancer mortality after

> treatment with ATDs, not RAI. The RAI showed a slight increase in thyroid

> cancer only, but they attributed that to the thyroid disease itself. Not

> really what I wanted to hear.

>

> Holly

>

>

>

>

[Guest guest]

Holly -

You really have to see the full text of this article to appreciate it. The

summary doesn't really do it justice. The article breaks down the patients

into groups depending on what treatment they had. They have cancer stats for

the group that had any RAI, _only_ RAI, _only_ drugs, and surgery. This is

where you see some interesting statistics. For example, the summary says

that RAI showed a slight increase in thyroid cancer, probably due to the

nature of the disease itself. Well, if you look through the actual stats,

you might come to a different conclusion. The standardized mortality rate

(SMR) for thyroid cancer in the group that had any RAI (this means they

could also have had ATDs and/or other treatments) was 3.94. If you look at

the group that had _only_ RAI, the SMR for thyroid cancer was 4.91.

Alternatively, the SMR for thyroid cancer in the group that had surgery

(total or sub-total) was understandably 1.07. And the group that used only

ATDs had a SMR for thyroid cancer of 0 (no deaths attributed to thyroid

cancer). So, you can see that looking at all the stats, you might come to a

different conclusion if you were deciding on a treatment.

And yes, the SMR indexes for the group having _only _ RAI for things like

kidney cancer was 1.43, brain cancer was 1.60, digestive tract, 1.12,

esophagus 1.15, and colon was 1.15. They probably don't consider these

numbers " statistically significant " , but when you look at them, you can see

that the rates for these are higher than the rates for other cancers, which

might make one think that there is some logic to the fact that other organs

absorb the RAI and perhaps that is contributing to cancers in these areas.

It makes you think anyway.

I can see why a lot of docs might argue with the results. The mean age of

participants at time of treatment was 40 - 50, patients were followed for

about 20 years. So one could argue that perhaps the older patients accounted

for the larger cancer rates, who knows? You can argue it any way you want,

but it's interesting to see their data. They also break it down into number

of years between treatment and cancer death. Also, for those of you on ATDs

who may be worried about what the summary said about risk of cancer

increased with ATD use, the text of the article has a little explanation

about that which is important:

" Because patients treated with antithyroid drugs had an especially high rate

of cancers diagnosed before study entry, an SMR analysis excluding patients

with cancers diagnosed prior to study entry was performed. In this analysis,

only brain cancer deaths remained elevated; however, excluding patients with

cancers prior to study entry will underestimate the SMR. "

So, again, the summary doesn't really give an accurate picture that the full

text does.

For those that want to see the full text, you can get it online at the JAMA

website (www.jama.ama-assn.org), but they want $9 to get the full text copy

online. I just went to my local library and printed it off the magazine

index for free.

That's the scoop. Read it if you want and draw your own conclusions!

RE: Frustrated

>I checked out a summary of the article here:

>http://jama.ama-assn.org/issues/v280n4/abs/joc6995.html

><http://jama.ama-assn.org/issues/v280n4/abs/joc6995.html>

>

>The summary, though, shows an increased risk of cancer mortality after

>treatment with ATDs, not RAI. The RAI showed a slight increase in thyroid

>cancer only, but they attributed that to the thyroid disease itself. Not

>really what I wanted to hear.

>

>Holly

>

>

>

>

[Guest guest]

Holly -

You really have to see the full text of this article to appreciate it. The

summary doesn't really do it justice. The article breaks down the patients

into groups depending on what treatment they had. They have cancer stats for

the group that had any RAI, _only_ RAI, _only_ drugs, and surgery. This is

where you see some interesting statistics. For example, the summary says

that RAI showed a slight increase in thyroid cancer, probably due to the

nature of the disease itself. Well, if you look through the actual stats,

you might come to a different conclusion. The standardized mortality rate

(SMR) for thyroid cancer in the group that had any RAI (this means they

could also have had ATDs and/or other treatments) was 3.94. If you look at

the group that had _only_ RAI, the SMR for thyroid cancer was 4.91.

Alternatively, the SMR for thyroid cancer in the group that had surgery

(total or sub-total) was understandably 1.07. And the group that used only

ATDs had a SMR for thyroid cancer of 0 (no deaths attributed to thyroid

cancer). So, you can see that looking at all the stats, you might come to a

different conclusion if you were deciding on a treatment.

And yes, the SMR indexes for the group having _only _ RAI for things like

kidney cancer was 1.43, brain cancer was 1.60, digestive tract, 1.12,

esophagus 1.15, and colon was 1.15. They probably don't consider these

numbers " statistically significant " , but when you look at them, you can see

that the rates for these are higher than the rates for other cancers, which

might make one think that there is some logic to the fact that other organs

absorb the RAI and perhaps that is contributing to cancers in these areas.

It makes you think anyway.

I can see why a lot of docs might argue with the results. The mean age of

participants at time of treatment was 40 - 50, patients were followed for

about 20 years. So one could argue that perhaps the older patients accounted

for the larger cancer rates, who knows? You can argue it any way you want,

but it's interesting to see their data. They also break it down into number

of years between treatment and cancer death. Also, for those of you on ATDs

who may be worried about what the summary said about risk of cancer

increased with ATD use, the text of the article has a little explanation

about that which is important:

" Because patients treated with antithyroid drugs had an especially high rate

of cancers diagnosed before study entry, an SMR analysis excluding patients

with cancers diagnosed prior to study entry was performed. In this analysis,

only brain cancer deaths remained elevated; however, excluding patients with

cancers prior to study entry will underestimate the SMR. "

So, again, the summary doesn't really give an accurate picture that the full

text does.

For those that want to see the full text, you can get it online at the JAMA

website (www.jama.ama-assn.org), but they want $9 to get the full text copy

online. I just went to my local library and printed it off the magazine

index for free.

That's the scoop. Read it if you want and draw your own conclusions!

RE: Frustrated

>I checked out a summary of the article here:

>http://jama.ama-assn.org/issues/v280n4/abs/joc6995.html

><http://jama.ama-assn.org/issues/v280n4/abs/joc6995.html>

>

>The summary, though, shows an increased risk of cancer mortality after

>treatment with ATDs, not RAI. The RAI showed a slight increase in thyroid

>cancer only, but they attributed that to the thyroid disease itself. Not

>really what I wanted to hear.

>

>Holly

>

>

>

>

[Guest guest]

Holly -

You really have to see the full text of this article to appreciate it. The

summary doesn't really do it justice. The article breaks down the patients

into groups depending on what treatment they had. They have cancer stats for

the group that had any RAI, _only_ RAI, _only_ drugs, and surgery. This is

where you see some interesting statistics. For example, the summary says

that RAI showed a slight increase in thyroid cancer, probably due to the

nature of the disease itself. Well, if you look through the actual stats,

you might come to a different conclusion. The standardized mortality rate

(SMR) for thyroid cancer in the group that had any RAI (this means they

could also have had ATDs and/or other treatments) was 3.94. If you look at

the group that had _only_ RAI, the SMR for thyroid cancer was 4.91.

Alternatively, the SMR for thyroid cancer in the group that had surgery

(total or sub-total) was understandably 1.07. And the group that used only

ATDs had a SMR for thyroid cancer of 0 (no deaths attributed to thyroid

cancer). So, you can see that looking at all the stats, you might come to a

different conclusion if you were deciding on a treatment.

And yes, the SMR indexes for the group having _only _ RAI for things like

kidney cancer was 1.43, brain cancer was 1.60, digestive tract, 1.12,

esophagus 1.15, and colon was 1.15. They probably don't consider these

numbers " statistically significant " , but when you look at them, you can see

that the rates for these are higher than the rates for other cancers, which

might make one think that there is some logic to the fact that other organs

absorb the RAI and perhaps that is contributing to cancers in these areas.

It makes you think anyway.

I can see why a lot of docs might argue with the results. The mean age of

participants at time of treatment was 40 - 50, patients were followed for

about 20 years. So one could argue that perhaps the older patients accounted

for the larger cancer rates, who knows? You can argue it any way you want,

but it's interesting to see their data. They also break it down into number

of years between treatment and cancer death. Also, for those of you on ATDs

who may be worried about what the summary said about risk of cancer

increased with ATD use, the text of the article has a little explanation

about that which is important:

" Because patients treated with antithyroid drugs had an especially high rate

of cancers diagnosed before study entry, an SMR analysis excluding patients

with cancers diagnosed prior to study entry was performed. In this analysis,

only brain cancer deaths remained elevated; however, excluding patients with

cancers prior to study entry will underestimate the SMR. "

So, again, the summary doesn't really give an accurate picture that the full

text does.

For those that want to see the full text, you can get it online at the JAMA

website (www.jama.ama-assn.org), but they want $9 to get the full text copy

online. I just went to my local library and printed it off the magazine

index for free.

That's the scoop. Read it if you want and draw your own conclusions!

RE: Frustrated

>I checked out a summary of the article here:

>http://jama.ama-assn.org/issues/v280n4/abs/joc6995.html

><http://jama.ama-assn.org/issues/v280n4/abs/joc6995.html>

>

>The summary, though, shows an increased risk of cancer mortality after

>treatment with ATDs, not RAI. The RAI showed a slight increase in thyroid

>cancer only, but they attributed that to the thyroid disease itself. Not

>really what I wanted to hear.

>

>Holly

>

>

>

>

[Guest guest]

I'm sure they summarize these things the way they want it to look! I'm on

NEJM e-mailing list, and get summaries of new articles, but I haven't been

able to make myself hand over the bucks to them to get the full article.

I'm sure it would be better if I could read the whole thing and come to my

own conclusions rather than having a doctor or researcher tell me what their

conclusions are! I do feel somewhat better after your explanation of the

study.

RE: Frustrated

>I checked out a summary of the article here:

> http://jama.ama-assn.org/issues/v280n4/abs/joc6995.html

<http://jama.ama-assn.org/issues/v280n4/abs/joc6995.html>

>< http://jama.ama-assn.org/issues/v280n4/abs/joc6995.html

<http://jama.ama-assn.org/issues/v280n4/abs/joc6995.html> >

>

>The summary, though, shows an increased risk of cancer mortality after

>treatment with ATDs, not RAI. The RAI showed a slight increase in thyroid

>cancer only, but they attributed that to the thyroid disease itself. Not

>really what I wanted to hear.

>

>Holly

>

>

>

>

[Guest guest]

I'm sure they summarize these things the way they want it to look! I'm on

NEJM e-mailing list, and get summaries of new articles, but I haven't been

able to make myself hand over the bucks to them to get the full article.

I'm sure it would be better if I could read the whole thing and come to my

own conclusions rather than having a doctor or researcher tell me what their

conclusions are! I do feel somewhat better after your explanation of the

study.

RE: Frustrated

>I checked out a summary of the article here:

> http://jama.ama-assn.org/issues/v280n4/abs/joc6995.html

<http://jama.ama-assn.org/issues/v280n4/abs/joc6995.html>

>< http://jama.ama-assn.org/issues/v280n4/abs/joc6995.html

<http://jama.ama-assn.org/issues/v280n4/abs/joc6995.html> >

>

>The summary, though, shows an increased risk of cancer mortality after

>treatment with ATDs, not RAI. The RAI showed a slight increase in thyroid

>cancer only, but they attributed that to the thyroid disease itself. Not

>really what I wanted to hear.

>

>Holly

>

>

>

>