Re: PTU vs. RAI

[Guest guest]

Hi,

I did a literature search on this the other night and there are more than 50

references saying that people with mild eye disease should not have RAI as it

will make the condition worse.

Thyroid eye disease is caused by the same antibodies that cause

hyperthyroidism in GD. RAI causes a dramatic rise in these antibodies.

They're released from dying thyroid cells and immune system cells within the

gland are stimulated to produce more thryoid antibodies.

PTU is safe in pregnancy when used at appropriate doses, lower than 200 mg

daily. Since most everyone can be maintained on 100-150 mg daily after the

initial 6 weeks, this isn't generally a problem. Also, remission can occur

within a few weeks up to 18 months. You could be in remission by the time you

become pregnant. Best to you, Elaine

[Guest guest]

Hi,

I did a literature search on this the other night and there are more than 50

references saying that people with mild eye disease should not have RAI as it

will make the condition worse.

Thyroid eye disease is caused by the same antibodies that cause

hyperthyroidism in GD. RAI causes a dramatic rise in these antibodies.

They're released from dying thyroid cells and immune system cells within the

gland are stimulated to produce more thryoid antibodies.

PTU is safe in pregnancy when used at appropriate doses, lower than 200 mg

daily. Since most everyone can be maintained on 100-150 mg daily after the

initial 6 weeks, this isn't generally a problem. Also, remission can occur

within a few weeks up to 18 months. You could be in remission by the time you

become pregnant. Best to you, Elaine

[Guest guest]

Hi Margaret,

First of all, you are right, RAI can and does make eye problems worse,

especially when people are in the active phase of TED. I would consider

getting a new endo if yours is giving you such obviously bad advice.

Second, if you want to get pregnant, I've heard it is better to wait at

least a year after RAI before trying to conceive. I have also heard that

RAI can cause fertility problems down the road - the best luck people have

is getting pregnant a year or two after RAI, after that, there seem to be

some problems.

Third, if you are doing well on PTU, then why not stay on it? You CAN get

pregnant while on PTU, and as long as your dose is in acceptable limits the

baby will not be harmed by it, and the PTU is helping to fight the

antibodies that are causing your TED.

RAI does NOT address the autoimmune nature of this disease and does not

cure " us - it just trades hyper with hypo. PTU will give you a chance to go

into " remission " and hopefully you will be able to stay there and have a

healthy thyroid.

Here is another helpful hint for your eyes, in case you haven't read it

anywhere already: Flaxseed oil. Flaxseed oil is high in Omega 3 fatty acids,

which are essential to our health. It has really helped me with my eyes

(they are back to normal) and others have said the same. You can search the

archives for info if you want, or email me if you can't find it and I'll dig

it up.

There are also lots of good articles in the " files " section of the site:

http://groups.yahoo.com/group/graves_support/files/

Take care, and welcome to the board!

Pam B.

Diagnosed 12/01 (hyper with both graves and hashimotos ABs)

Mostly Alt Med - doing MUCH better. Numbers very close to normal and ABs

going away.

My story: http://www.webmosaics.com/thyroid/

" If you can't be a good example, then you'll just have to be a horrible

warning. " - anonymous

[Guest guest]

Hi Margaret,

First of all, you are right, RAI can and does make eye problems worse,

especially when people are in the active phase of TED. I would consider

getting a new endo if yours is giving you such obviously bad advice.

Second, if you want to get pregnant, I've heard it is better to wait at

least a year after RAI before trying to conceive. I have also heard that

RAI can cause fertility problems down the road - the best luck people have

is getting pregnant a year or two after RAI, after that, there seem to be

some problems.

Third, if you are doing well on PTU, then why not stay on it? You CAN get

pregnant while on PTU, and as long as your dose is in acceptable limits the

baby will not be harmed by it, and the PTU is helping to fight the

antibodies that are causing your TED.

RAI does NOT address the autoimmune nature of this disease and does not

cure " us - it just trades hyper with hypo. PTU will give you a chance to go

into " remission " and hopefully you will be able to stay there and have a

healthy thyroid.

Here is another helpful hint for your eyes, in case you haven't read it

anywhere already: Flaxseed oil. Flaxseed oil is high in Omega 3 fatty acids,

which are essential to our health. It has really helped me with my eyes

(they are back to normal) and others have said the same. You can search the

archives for info if you want, or email me if you can't find it and I'll dig

it up.

There are also lots of good articles in the " files " section of the site:

http://groups.yahoo.com/group/graves_support/files/

Take care, and welcome to the board!

Pam B.

Diagnosed 12/01 (hyper with both graves and hashimotos ABs)

Mostly Alt Med - doing MUCH better. Numbers very close to normal and ABs

going away.

My story: http://www.webmosaics.com/thyroid/

" If you can't be a good example, then you'll just have to be a horrible

warning. " - anonymous

[Guest guest]

Hi Margaret,

First of all, you are right, RAI can and does make eye problems worse,

especially when people are in the active phase of TED. I would consider

getting a new endo if yours is giving you such obviously bad advice.

Second, if you want to get pregnant, I've heard it is better to wait at

least a year after RAI before trying to conceive. I have also heard that

RAI can cause fertility problems down the road - the best luck people have

is getting pregnant a year or two after RAI, after that, there seem to be

some problems.

Third, if you are doing well on PTU, then why not stay on it? You CAN get

pregnant while on PTU, and as long as your dose is in acceptable limits the

baby will not be harmed by it, and the PTU is helping to fight the

antibodies that are causing your TED.

RAI does NOT address the autoimmune nature of this disease and does not

cure " us - it just trades hyper with hypo. PTU will give you a chance to go

into " remission " and hopefully you will be able to stay there and have a

healthy thyroid.

Here is another helpful hint for your eyes, in case you haven't read it

anywhere already: Flaxseed oil. Flaxseed oil is high in Omega 3 fatty acids,

which are essential to our health. It has really helped me with my eyes

(they are back to normal) and others have said the same. You can search the

archives for info if you want, or email me if you can't find it and I'll dig

it up.

There are also lots of good articles in the " files " section of the site:

http://groups.yahoo.com/group/graves_support/files/

Take care, and welcome to the board!

Pam B.

Diagnosed 12/01 (hyper with both graves and hashimotos ABs)

Mostly Alt Med - doing MUCH better. Numbers very close to normal and ABs

going away.

My story: http://www.webmosaics.com/thyroid/

" If you can't be a good example, then you'll just have to be a horrible

warning. " - anonymous

[Guest guest]

HI & welcome!

I am fairly new too,but will put my 2 cents in,that way I will feel

helpful:)

My aunt recently had RAI and it made her eyes much worse...she did have

active eye disease before RAI,but they were worse after and she developed

double vision.

As far as PTU and preg...I just started on 100 mg of PTU a day(I am

breastfeeding) and my OB dr told me that I could get pregnant,she told me it

does not cause birth defects,but to come in right away when I got preg so

they could check for some bone marrow probs that could develop in mother &

baby. Jen

[Guest guest]

HI & welcome!

I am fairly new too,but will put my 2 cents in,that way I will feel

helpful:)

My aunt recently had RAI and it made her eyes much worse...she did have

active eye disease before RAI,but they were worse after and she developed

double vision.

As far as PTU and preg...I just started on 100 mg of PTU a day(I am

breastfeeding) and my OB dr told me that I could get pregnant,she told me it

does not cause birth defects,but to come in right away when I got preg so

they could check for some bone marrow probs that could develop in mother &

baby. Jen

[Guest guest]

HI & welcome!

I am fairly new too,but will put my 2 cents in,that way I will feel

helpful:)

My aunt recently had RAI and it made her eyes much worse...she did have

active eye disease before RAI,but they were worse after and she developed

double vision.

As far as PTU and preg...I just started on 100 mg of PTU a day(I am

breastfeeding) and my OB dr told me that I could get pregnant,she told me it

does not cause birth defects,but to come in right away when I got preg so

they could check for some bone marrow probs that could develop in mother &

baby. Jen

[Guest guest]

Margaret wrote:

>

> I am new to this site so don't really know how it works yet.

Hi Margaret,

well people around here aren't too keen on RAI around here, but

hear them out, you might end up agreeing with them.

> I am trying to get pregnant this summer and my endocrinologist and

ophthalmologist is convinced that RAI will not make my eyes, which are in the

active phase but very subtle, worse. However, I have heard many people say that

they think RAI can make the eyes worse. What if they use steroids after the RAI?

Does this protect my eyes?

There are several (three at least) randomised clinically

controlled trials showing that RAI worsens the eye symptoms in

approximately a third of patients, some non-randomised trials

reported a slightly lower incidence of worsening of eye problems

but that is probably bias creaping in from somewhere. Worse

doesn't mean bad necessarily, just measurably different in the

direction of worse.

Prednisone (the steroid in question) has been used in at least

one trial and seems to prevent the worsening, but I'm not sure

I'd trust my eyesight to one trial, especially if I had any

noticable thyroid related activity. Prednisone has other issues,

so whilst it is great for relieving thyroid eye disease symptoms

you might wish to avoid it as a preventative - immune

suppression of any form carries significant risks.

RAI will mean at least 6 months without getting pregnant, many

experts recommend a year, so it would have to be late summer

assuming the RAI was done soon, and the first dose worked.

> What about just staying on PTU instead? Can there be any damage to the baby?

Studies and data so far regard pregnancy on small doses of PTU

as safe (by most reasonable standards), definitions of small

vary from 150mg a day to 300mg a day.

Given the biological effects of PTU, and the fact it can pass to

the baby through blood, and later milk, it is usual to monitor

the fetuses developments and babies thyroid levels carefully

till weening stops, although I'm not sure what they do if they

spot a problem before birth.

>From the future baby's perspective surgery is probably the best

option for treatment, has to be done before pregnancy.

>From your perspective PTU is probably best as it protects the

eyes.

Tapazole (and other Methimazole based drugs) have been linked to

higher rates of minor birth defects, but if you weren't looking

at pregnancy they offer some advantages over PTU - longer half

life, taste better, possibly less toxic although the evidence

isn't compelling.

Assuming you are reasonably stable on a low dose of PTU, you may

be well advised to stay there, otherwise ask about surgery (it

tends to be more expensive!). In the US total thyroidectomies

are most common, but subtotal or partial thyroidectomies have

better outcomes if you can put up with the increased risk of

relapse.

I'm fairly convince RAI ablation for Graves' will soon be

consigned to the history books, it is only the US which has

developed a culture of using RAI so quickly and frequently, in

Europe surgery tends to be the preferred treatment if

antithyroid drugs aren't to be used long term.

Simon

[Guest guest]

Margaret wrote:

>

> I am new to this site so don't really know how it works yet.

Hi Margaret,

well people around here aren't too keen on RAI around here, but

hear them out, you might end up agreeing with them.

> I am trying to get pregnant this summer and my endocrinologist and

ophthalmologist is convinced that RAI will not make my eyes, which are in the

active phase but very subtle, worse. However, I have heard many people say that

they think RAI can make the eyes worse. What if they use steroids after the RAI?

Does this protect my eyes?

There are several (three at least) randomised clinically

controlled trials showing that RAI worsens the eye symptoms in

approximately a third of patients, some non-randomised trials

reported a slightly lower incidence of worsening of eye problems

but that is probably bias creaping in from somewhere. Worse

doesn't mean bad necessarily, just measurably different in the

direction of worse.

Prednisone (the steroid in question) has been used in at least

one trial and seems to prevent the worsening, but I'm not sure

I'd trust my eyesight to one trial, especially if I had any

noticable thyroid related activity. Prednisone has other issues,

so whilst it is great for relieving thyroid eye disease symptoms

you might wish to avoid it as a preventative - immune

suppression of any form carries significant risks.

RAI will mean at least 6 months without getting pregnant, many

experts recommend a year, so it would have to be late summer

assuming the RAI was done soon, and the first dose worked.

> What about just staying on PTU instead? Can there be any damage to the baby?

Studies and data so far regard pregnancy on small doses of PTU

as safe (by most reasonable standards), definitions of small

vary from 150mg a day to 300mg a day.

Given the biological effects of PTU, and the fact it can pass to

the baby through blood, and later milk, it is usual to monitor

the fetuses developments and babies thyroid levels carefully

till weening stops, although I'm not sure what they do if they

spot a problem before birth.

>From the future baby's perspective surgery is probably the best

option for treatment, has to be done before pregnancy.

>From your perspective PTU is probably best as it protects the

eyes.

Tapazole (and other Methimazole based drugs) have been linked to

higher rates of minor birth defects, but if you weren't looking

at pregnancy they offer some advantages over PTU - longer half

life, taste better, possibly less toxic although the evidence

isn't compelling.

Assuming you are reasonably stable on a low dose of PTU, you may

be well advised to stay there, otherwise ask about surgery (it

tends to be more expensive!). In the US total thyroidectomies

are most common, but subtotal or partial thyroidectomies have

better outcomes if you can put up with the increased risk of

relapse.

I'm fairly convince RAI ablation for Graves' will soon be

consigned to the history books, it is only the US which has

developed a culture of using RAI so quickly and frequently, in

Europe surgery tends to be the preferred treatment if

antithyroid drugs aren't to be used long term.

Simon

[Guest guest]

Margaret,

On the whole, this group has a strong anti-RAI bias. I had RAI last

spring, and I am not against it the way many here are, but nevertheless,

I wouldn't do it if I had eye symptoms. What reason do your doctors

give for thinking you wouldn't be at risk for worsening eye disease?

Personally, if I were in your position, I would try PTU (which can be

used during pregnancy) or if that didn't work out, I would look into

surgery.

-- in Fla.

[Guest guest]

Margaret,

On the whole, this group has a strong anti-RAI bias. I had RAI last

spring, and I am not against it the way many here are, but nevertheless,

I wouldn't do it if I had eye symptoms. What reason do your doctors

give for thinking you wouldn't be at risk for worsening eye disease?

Personally, if I were in your position, I would try PTU (which can be

used during pregnancy) or if that didn't work out, I would look into

surgery.

-- in Fla.

[Guest guest]

Margaret,

On the whole, this group has a strong anti-RAI bias. I had RAI last

spring, and I am not against it the way many here are, but nevertheless,

I wouldn't do it if I had eye symptoms. What reason do your doctors

give for thinking you wouldn't be at risk for worsening eye disease?

Personally, if I were in your position, I would try PTU (which can be

used during pregnancy) or if that didn't work out, I would look into

surgery.

-- in Fla.

[Guest guest]

Thanks so much for your help Simon. You know your stuff! So why do all the

specialists push RAI if it is so risky? It doesn't make sense. Are there any

risks to staying on PTU or methimazole forever? Also, is there a way to check

the responses online versus via email?

Margaret

Re: PTU vs. RAI

Margaret wrote:

>

> I am new to this site so don't really know how it works yet.

Hi Margaret,

well people around here aren't too keen on RAI around here, but

hear them out, you might end up agreeing with them.

> I am trying to get pregnant this summer and my endocrinologist and

ophthalmologist is convinced that RAI will not make my eyes, which are in the

active phase but very subtle, worse. However, I have heard many people say that

they think RAI can make the eyes worse. What if they use steroids after the RAI?

Does this protect my eyes?

There are several (three at least) randomised clinically

controlled trials showing that RAI worsens the eye symptoms in

approximately a third of patients, some non-randomised trials

reported a slightly lower incidence of worsening of eye problems

but that is probably bias creaping in from somewhere. Worse

doesn't mean bad necessarily, just measurably different in the

direction of worse.

Prednisone (the steroid in question) has been used in at least

one trial and seems to prevent the worsening, but I'm not sure

I'd trust my eyesight to one trial, especially if I had any

noticable thyroid related activity. Prednisone has other issues,

so whilst it is great for relieving thyroid eye disease symptoms

you might wish to avoid it as a preventative - immune

suppression of any form carries significant risks.

RAI will mean at least 6 months without getting pregnant, many

experts recommend a year, so it would have to be late summer

assuming the RAI was done soon, and the first dose worked.

> What about just staying on PTU instead? Can there be any damage to the baby?

Studies and data so far regard pregnancy on small doses of PTU

as safe (by most reasonable standards), definitions of small

vary from 150mg a day to 300mg a day.

Given the biological effects of PTU, and the fact it can pass to

the baby through blood, and later milk, it is usual to monitor

the fetuses developments and babies thyroid levels carefully

till weening stops, although I'm not sure what they do if they

spot a problem before birth.

>From the future baby's perspective surgery is probably the best

option for treatment, has to be done before pregnancy.

>From your perspective PTU is probably best as it protects the

eyes.

Tapazole (and other Methimazole based drugs) have been linked to

higher rates of minor birth defects, but if you weren't looking

at pregnancy they offer some advantages over PTU - longer half

life, taste better, possibly less toxic although the evidence

isn't compelling.

Assuming you are reasonably stable on a low dose of PTU, you may

be well advised to stay there, otherwise ask about surgery (it

tends to be more expensive!). In the US total thyroidectomies

are most common, but subtotal or partial thyroidectomies have

better outcomes if you can put up with the increased risk of

relapse.

I'm fairly convince RAI ablation for Graves' will soon be

consigned to the history books, it is only the US which has

developed a culture of using RAI so quickly and frequently, in

Europe surgery tends to be the preferred treatment if

antithyroid drugs aren't to be used long term.

Simon

-------------------------------------

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 do not have the endorsement of

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

--------------------------------------------------------------------------------\

------

[Guest guest]

Thanks for your help. I also got this advice about RAI from the lead

opthamologist in Seattle who teaches at University of Washington so you would

think I could trust him. However, all of these stories have really freaked me

out. He says that if we use steroids two weeks after RAI then it should be OK.

Do you know if the people on this site that had problems with RAI also used

steroids? Do you know the chance that RAI will make my eyes worse? All the

doctor says is small which means nothing to me. I don't know if that is 1% or

20%.

Re: PTU vs. RAI

Hi Margaret,

First of all, you are right, RAI can and does make eye problems worse,

especially when people are in the active phase of TED. I would consider

getting a new endo if yours is giving you such obviously bad advice.

Second, if you want to get pregnant, I've heard it is better to wait at

least a year after RAI before trying to conceive. I have also heard that

RAI can cause fertility problems down the road - the best luck people have

is getting pregnant a year or two after RAI, after that, there seem to be

some problems.

Third, if you are doing well on PTU, then why not stay on it? You CAN get

pregnant while on PTU, and as long as your dose is in acceptable limits the

baby will not be harmed by it, and the PTU is helping to fight the

antibodies that are causing your TED.

RAI does NOT address the autoimmune nature of this disease and does not

cure " us - it just trades hyper with hypo. PTU will give you a chance to go

into " remission " and hopefully you will be able to stay there and have a

healthy thyroid.

Here is another helpful hint for your eyes, in case you haven't read it

anywhere already: Flaxseed oil. Flaxseed oil is high in Omega 3 fatty acids,

which are essential to our health. It has really helped me with my eyes

(they are back to normal) and others have said the same. You can search the

archives for info if you want, or email me if you can't find it and I'll dig

it up.

There are also lots of good articles in the " files " section of the site:

http://groups.yahoo.com/group/graves_support/files/

Take care, and welcome to the board!

Pam B.

Diagnosed 12/01 (hyper with both graves and hashimotos ABs)

Mostly Alt Med - doing MUCH better. Numbers very close to normal and ABs

going away.

My story: http://www.webmosaics.com/thyroid/

" If you can't be a good example, then you'll just have to be a horrible

warning. " - anonymous

-------------------------------------

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 do not have the endorsement of

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

--------------------------------------------------------------------------------\

------

[Guest guest]

Why do you think everyone is so against RAI if all the doctors are for it? It

doesn't make sense. Do you think the people whose eyes get worse after RAI are

in a 1% minority?

Re: PTU vs. RAI

Margaret,

On the whole, this group has a strong anti-RAI bias. I had RAI last

spring, and I am not against it the way many here are, but nevertheless,

I wouldn't do it if I had eye symptoms. What reason do your doctors

give for thinking you wouldn't be at risk for worsening eye disease?

Personally, if I were in your position, I would try PTU (which can be

used during pregnancy) or if that didn't work out, I would look into

surgery.

-- in Fla.

-------------------------------------

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 do not have the endorsement of

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

--------------------------------------------------------------------------------\

------

[Guest guest]

Why do you think everyone is so against RAI if all the doctors are for it? It

doesn't make sense. Do you think the people whose eyes get worse after RAI are

in a 1% minority?

Re: PTU vs. RAI

Margaret,

On the whole, this group has a strong anti-RAI bias. I had RAI last

spring, and I am not against it the way many here are, but nevertheless,

I wouldn't do it if I had eye symptoms. What reason do your doctors

give for thinking you wouldn't be at risk for worsening eye disease?

Personally, if I were in your position, I would try PTU (which can be

used during pregnancy) or if that didn't work out, I would look into

surgery.

-- in Fla.

-------------------------------------

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 do not have the endorsement of

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

--------------------------------------------------------------------------------\

------

[Guest guest]

Thanks so much for your help. I don't understand why if there is this much

literature against RAI, the doctors still don't believe it is dangerous. Why do

you think they push RAI? I've read that with PTU the baby can be born as either

hypo or hyper? Is there any chance I can hurt the baby on PTU? Also, my doctor

says that if we use steroids for my eyes 2 weeks after RAI I should be OK. Do

you know if the people on this site how have had problems used steroids too?

Re: PTU vs. RAI

Hi,

I did a literature search on this the other night and there are more than 50

references saying that people with mild eye disease should not have RAI as it

will make the condition worse.

Thyroid eye disease is caused by the same antibodies that cause

hyperthyroidism in GD. RAI causes a dramatic rise in these antibodies.

They're released from dying thyroid cells and immune system cells within the

gland are stimulated to produce more thryoid antibodies.

PTU is safe in pregnancy when used at appropriate doses, lower than 200 mg

daily. Since most everyone can be maintained on 100-150 mg daily after the

initial 6 weeks, this isn't generally a problem. Also, remission can occur

within a few weeks up to 18 months. You could be in remission by the time you

become pregnant. Best to you, Elaine

[Guest guest]

Thanks so much for your help. I don't understand why if there is this much

literature against RAI, the doctors still don't believe it is dangerous. Why do

you think they push RAI? I've read that with PTU the baby can be born as either

hypo or hyper? Is there any chance I can hurt the baby on PTU? Also, my doctor

says that if we use steroids for my eyes 2 weeks after RAI I should be OK. Do

you know if the people on this site how have had problems used steroids too?

Re: PTU vs. RAI

Hi,

I did a literature search on this the other night and there are more than 50

references saying that people with mild eye disease should not have RAI as it

will make the condition worse.

Thyroid eye disease is caused by the same antibodies that cause

hyperthyroidism in GD. RAI causes a dramatic rise in these antibodies.

They're released from dying thyroid cells and immune system cells within the

gland are stimulated to produce more thryoid antibodies.

PTU is safe in pregnancy when used at appropriate doses, lower than 200 mg

daily. Since most everyone can be maintained on 100-150 mg daily after the

initial 6 weeks, this isn't generally a problem. Also, remission can occur

within a few weeks up to 18 months. You could be in remission by the time you

become pregnant. Best to you, Elaine

[Guest guest]

Hi Margaret, are you in the Seattle area then? I am, and I have names of a

couple good endos and the name of an AWESOME ND at Bastyr if you want them -

just email me!

Pam B.

-- Re: PTU vs. RAI

Thanks for your help. I also got this advice about RAI from the lead

opthamologist in Seattle who teaches at University of Washington so you would

think I could trust him. However, all of these stories have really freaked me

out. He says that if we use steroids two weeks after RAI then it should be OK.

Do you know if the people on this site that had problems with RAI also used

steroids? Do you know the chance that RAI will make my eyes worse? All the

doctor says is small which means nothing to me. I don't know if that is 1% or

20%.

[Guest guest]

Do keep in mind that you will find a bias almost everywhere you look for

information. Here the bias is for ATD's and against RAI. People who

are in favor of RAI tend to congregate elsewhere.

That said, it is the treatment that most US doctors are trained in. It

is also faster and easier (for the doctor) than ATD's or surgery.

Managing a patient on ATD's is a lot more complicated, and most doctors

just don't know much about it. What they do know is oftern out of

date. As for the percentage that get worse TED after RAI, I don't

remember it for sure, but I know it was a lot higher than 1%.

--

Margaret wrote:

>

> Why do you think everyone is so against RAI if all the doctors are for it? It

doesn't make sense. Do you think the people whose eyes get worse after RAI are

in a 1% minority?

>

> Re: PTU vs. RAI

>

> Margaret,

>

> On the whole, this group has a strong anti-RAI bias. I had RAI last

> spring, and I am not against it the way many here are, but nevertheless,

> I wouldn't do it if I had eye symptoms. What reason do your doctors

> give for thinking you wouldn't be at risk for worsening eye disease?

> Personally, if I were in your position, I would try PTU (which can be

> used during pregnancy) or if that didn't work out, I would look into

> surgery.

>

> -- in Fla.

>

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

> 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 do not have the endorsement

of

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

>

--------------------------------------------------------------------------------\

------

>

>

[Guest guest]

Do keep in mind that you will find a bias almost everywhere you look for

information. Here the bias is for ATD's and against RAI. People who

are in favor of RAI tend to congregate elsewhere.

That said, it is the treatment that most US doctors are trained in. It

is also faster and easier (for the doctor) than ATD's or surgery.

Managing a patient on ATD's is a lot more complicated, and most doctors

just don't know much about it. What they do know is oftern out of

date. As for the percentage that get worse TED after RAI, I don't

remember it for sure, but I know it was a lot higher than 1%.

--

Margaret wrote:

>

> Why do you think everyone is so against RAI if all the doctors are for it? It

doesn't make sense. Do you think the people whose eyes get worse after RAI are

in a 1% minority?

>

> Re: PTU vs. RAI

>

> Margaret,

>

> On the whole, this group has a strong anti-RAI bias. I had RAI last

> spring, and I am not against it the way many here are, but nevertheless,

> I wouldn't do it if I had eye symptoms. What reason do your doctors

> give for thinking you wouldn't be at risk for worsening eye disease?

> Personally, if I were in your position, I would try PTU (which can be

> used during pregnancy) or if that didn't work out, I would look into

> surgery.

>

> -- in Fla.

>

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

> 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 do not have the endorsement

of

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

>

--------------------------------------------------------------------------------\

------

>

>

[Guest guest]

Do keep in mind that you will find a bias almost everywhere you look for

information. Here the bias is for ATD's and against RAI. People who

are in favor of RAI tend to congregate elsewhere.

That said, it is the treatment that most US doctors are trained in. It

is also faster and easier (for the doctor) than ATD's or surgery.

Managing a patient on ATD's is a lot more complicated, and most doctors

just don't know much about it. What they do know is oftern out of

date. As for the percentage that get worse TED after RAI, I don't

remember it for sure, but I know it was a lot higher than 1%.

--

Margaret wrote:

>

> Why do you think everyone is so against RAI if all the doctors are for it? It

doesn't make sense. Do you think the people whose eyes get worse after RAI are

in a 1% minority?

>

> Re: PTU vs. RAI

>

> Margaret,

>

> On the whole, this group has a strong anti-RAI bias. I had RAI last

> spring, and I am not against it the way many here are, but nevertheless,

> I wouldn't do it if I had eye symptoms. What reason do your doctors

> give for thinking you wouldn't be at risk for worsening eye disease?

> Personally, if I were in your position, I would try PTU (which can be

> used during pregnancy) or if that didn't work out, I would look into

> surgery.

>

> -- in Fla.

>

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

> 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 do not have the endorsement

of

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

>

--------------------------------------------------------------------------------\

------

>

>

[Guest guest]

Margaret wrote:

>

> Thanks so much for your help Simon. You know your stuff! So why do all the

specialists push RAI if it is so risky? It doesn't make sense.

Remember a small percentage of Graves' patients spontaneously

develop thyroid eye disease every year, so the changes that

occur with RAI are hard to pin down for doctors without actually

making proper studies of the risks involved.

We are talking about possibly something like 1 in 20 or 1 in 10

having a worsening that needs treatment due to RAI (even if 1 in

3 have a measurable worsening).

The evidence for some of this is relatively recent, so unless

they keep abreast they won't know. Certainly steroids are often

not offered or discussed even today for many patients.

Try the European Journal of Endocrinology (2002) 147 1-11, it is

a review article on controversies in RAI ablation.

It also notes that smoking is a big risk factor, as is severe

hyperthyroid, preexisting eye issues, or failure to prevent

patients going hypothyroid after RAI ablation.

High TSI levels are noted as a possible risk factor, which makes

sense given what we know of the causes of thyroid eye disease.

My only quibble with the paper is the figure on cancers from RAI

is a tad optimistic.

The dose of radiation you receive from RAI causes cellular

damage that can lead to cancer. Typically these are the kind of

radiation induced cancers that can take years to develop, so the

risk is higher the younger you are (becoming very high at the

ages when the thyroid is still growing due to other effects).

I think 1.6% theoretical risk of cancer quoted in the above

paper is complete bunk, probably based on poor theoretical

models of risk from low doses of radiation. Some studies suggest

as many as 1 in 50 patients die from cancers caused by RAI, and

since the most common cancers from RAI are thyroid and bowel,

that figure probably hides a lot of non-fatal suffering.

> Are there any risks to staying on PTU or methimazole forever?

Of course, all potent medications carry some risks. PTU is a

suspected carcinogen, and also carries a risk of agranulocytosis

(suppression of white blood cells) which affects about 1% of

those who take it (although again it is a real problem for far

fewer).

There are also some reports of liver damage from PTU, but this

is exceeedingly rare side effect, probably due to some odd

genetic susceptibility or some such.

If you read the side effect lists for these drugs you'd never

take them, but if you read the case studies many of those who

had major issues, took too much for too long, and didn't consult

with their doctors when most people would have been there months

earlier. Some of course are just unlucky.

Surgery kind of moves most of your risks upfront, but is

surprisingly very safe, with surgical mortality now so low as to

be insignificant, the main issues surround vocal cord damage,

scarring, and parathyroid damage (also an issue with RAI

abalation). Papers from the 1950 regarded RAI as safe as

surgery, but surgery has moved on a lot since then, and we have

learnt a lot more about the risks of ionising radiation.

> Also, is there a way to check the responses online versus via email?

Yes, you can read the list at the Yahoo groups site, just go to

www.Yahoo.com and click on groups, it should remember who you

are, and what groups you read.

[Guest guest]

Margaret wrote:

>

> Thanks so much for your help Simon. You know your stuff! So why do all the

specialists push RAI if it is so risky? It doesn't make sense.

Remember a small percentage of Graves' patients spontaneously

develop thyroid eye disease every year, so the changes that

occur with RAI are hard to pin down for doctors without actually

making proper studies of the risks involved.

We are talking about possibly something like 1 in 20 or 1 in 10

having a worsening that needs treatment due to RAI (even if 1 in

3 have a measurable worsening).

The evidence for some of this is relatively recent, so unless

they keep abreast they won't know. Certainly steroids are often

not offered or discussed even today for many patients.

Try the European Journal of Endocrinology (2002) 147 1-11, it is

a review article on controversies in RAI ablation.

It also notes that smoking is a big risk factor, as is severe

hyperthyroid, preexisting eye issues, or failure to prevent

patients going hypothyroid after RAI ablation.

High TSI levels are noted as a possible risk factor, which makes

sense given what we know of the causes of thyroid eye disease.

My only quibble with the paper is the figure on cancers from RAI

is a tad optimistic.

The dose of radiation you receive from RAI causes cellular

damage that can lead to cancer. Typically these are the kind of

radiation induced cancers that can take years to develop, so the

risk is higher the younger you are (becoming very high at the

ages when the thyroid is still growing due to other effects).

I think 1.6% theoretical risk of cancer quoted in the above

paper is complete bunk, probably based on poor theoretical

models of risk from low doses of radiation. Some studies suggest

as many as 1 in 50 patients die from cancers caused by RAI, and

since the most common cancers from RAI are thyroid and bowel,

that figure probably hides a lot of non-fatal suffering.

> Are there any risks to staying on PTU or methimazole forever?

Of course, all potent medications carry some risks. PTU is a

suspected carcinogen, and also carries a risk of agranulocytosis

(suppression of white blood cells) which affects about 1% of

those who take it (although again it is a real problem for far

fewer).

There are also some reports of liver damage from PTU, but this

is exceeedingly rare side effect, probably due to some odd

genetic susceptibility or some such.

If you read the side effect lists for these drugs you'd never

take them, but if you read the case studies many of those who

had major issues, took too much for too long, and didn't consult

with their doctors when most people would have been there months

earlier. Some of course are just unlucky.

Surgery kind of moves most of your risks upfront, but is

surprisingly very safe, with surgical mortality now so low as to

be insignificant, the main issues surround vocal cord damage,

scarring, and parathyroid damage (also an issue with RAI

abalation). Papers from the 1950 regarded RAI as safe as

surgery, but surgery has moved on a lot since then, and we have

learnt a lot more about the risks of ionising radiation.

> Also, is there a way to check the responses online versus via email?

Yes, you can read the list at the Yahoo groups site, just go to

www.Yahoo.com and click on groups, it should remember who you

are, and what groups you read.