Re: PTU vs. RAI

[Guest guest]

Margaret wrote:

>

> Thanks so much for your input. This group has already been a much bigger help

than all my doctors. I was wondering- why are you on PTU if you already had RAI?

Wouldn't that just make you more hypo?

This long after RAI Jody's thyroid is dead, so there is no

thyroid hormone production for PTU to suppress.

PTU has a slight suppressive effect on the antibodies that cause

Graves/TED, although the scientific evidence for Jody's

treatment is sparse (only one major trial, that was

inconclusive). Still she says it works for her.

The suppressive effect on antibodies is not how PTU works, it is

just a side effect, and not a potent one at that, alas. Tapazole

does something similar.

This is touched on briefly in the EJE review article I

mentioned.

[Guest guest]

Margaret wrote:

>

> Thanks so much for your input. This group has already been a much bigger help

than all my doctors. I was wondering- why are you on PTU if you already had RAI?

Wouldn't that just make you more hypo?

This long after RAI Jody's thyroid is dead, so there is no

thyroid hormone production for PTU to suppress.

PTU has a slight suppressive effect on the antibodies that cause

Graves/TED, although the scientific evidence for Jody's

treatment is sparse (only one major trial, that was

inconclusive). Still she says it works for her.

The suppressive effect on antibodies is not how PTU works, it is

just a side effect, and not a potent one at that, alas. Tapazole

does something similar.

This is touched on briefly in the EJE review article I

mentioned.

[Guest guest]

Margaret wrote:

>

> Thanks so much for your input. This group has already been a much bigger help

than all my doctors. I was wondering- why are you on PTU if you already had RAI?

Wouldn't that just make you more hypo?

This long after RAI Jody's thyroid is dead, so there is no

thyroid hormone production for PTU to suppress.

PTU has a slight suppressive effect on the antibodies that cause

Graves/TED, although the scientific evidence for Jody's

treatment is sparse (only one major trial, that was

inconclusive). Still she says it works for her.

The suppressive effect on antibodies is not how PTU works, it is

just a side effect, and not a potent one at that, alas. Tapazole

does something similar.

This is touched on briefly in the EJE review article I

mentioned.

[Guest guest]

Hi,

Steroids prevent GO from worsening or developing immediately after RAI, but

there are no long-term studies showing if the people using steroids developed

GO later. Hale, the president of the American Foundation of Thyroid

Patients used steroids with RAI and still developed GO bad enough to

eventually require surgery. Since antibodies can be increased for up to 10

years after RAI, the benefits of short-term steroids would be limited. The

risk is small but it is significant. Take care, Elaine

[Guest guest]

Hi,

Steroids prevent GO from worsening or developing immediately after RAI, but

there are no long-term studies showing if the people using steroids developed

GO later. Hale, the president of the American Foundation of Thyroid

Patients used steroids with RAI and still developed GO bad enough to

eventually require surgery. Since antibodies can be increased for up to 10

years after RAI, the benefits of short-term steroids would be limited. The

risk is small but it is significant. Take care, Elaine

[Guest guest]

Hi,

All the doctors aren't for RAI. In Europe and Japan, RAI is rarely used and

never in women of child-bearing age. And today, more and more doctors in the

states are using ATDs and more thyroidectomies are being performed than ever

before.

[Guest guest]

Hi and welcome.

You've come to a great place to get information; I assume that while yes,

there is a strong anti-RAI bias here you can discriminate between the

solid info and the random rhetoric.

It isn't easy to accept that 80% of drs. will recommend something that is

not in the patient's best interests, but welcome to 21st century

medicine. Given that the overwhelming majority of drs. are pro RAI, most

of us are stuck getting treatment from them. Actually, I'd like to think

that a number of these drs. will use ATD's when asked and may even be

competent using them. (I wouldn't know, having reached remission in the

hands of an incompetent dr.)

What's especially sad is that of these 80%, not too many know how to

administer RAI to achieve maximum success and how to treat patients

post-RAI. It is important to stabilize a patient prior to RAI with ATD's

to minimum thyroid storm post-RAI; it is important NOT to let a patient

get badly hypo post RAI which means frequent monitoring and possible use

of ATD's even post RAI; and while I would not brand a dr. irresponsible

for suggesting steroids pre-RAI to reduce the risk of later TED (given

the current info I can understand this approach while not subscribing to

it) recommending RAI when TED already presents itself is an absolute

dealbreaker!!!

I have to confess to skimming and having been too quick to press delete

lately. So where exactly are you as far as your basic labwork after a

year on Tap? Why would you want to switch to PTU if you want to wait till

summer for a pregnancy if you might be in remission by then? (I'm not

confusing you with someone else, am I?)

If I were faced with Graves and wanting to start a family (I'm not; I

started a long time ago but I've thought this through) I would consider

trying if I were on a very low dose of PTU. I would also very seriously

consider surgery. Though Simon became hyper again after a partial

thyroidectomy it's not too common. The hypothyroidism post surgery is

much easier to regulate than post RAI, surgery does not increase the

antibody activity that's such a factor in TED, as Jody explains(BTW, save

Jody's posts and reread them; hers is the voice of experience), doesn't

carry the short term (exposure to family) and long term risks that RAI

does, wouldn't leave me with the cloud of " what if the GD comes back

postpartum " among other reasons. I don't mean to suggest that hypoT is

ever a piece of cake, just that it's a different kettle of fish (ok, so

I'm hungry) when surgery-induced vs. RAI induced.

Take your time and take care, Fay

________________________________________________________________

Sign Up for Juno Platinum Internet Access Today

Only $9.95 per month!

Visit www.juno.com

[Guest guest]

Hi and welcome.

You've come to a great place to get information; I assume that while yes,

there is a strong anti-RAI bias here you can discriminate between the

solid info and the random rhetoric.

It isn't easy to accept that 80% of drs. will recommend something that is

not in the patient's best interests, but welcome to 21st century

medicine. Given that the overwhelming majority of drs. are pro RAI, most

of us are stuck getting treatment from them. Actually, I'd like to think

that a number of these drs. will use ATD's when asked and may even be

competent using them. (I wouldn't know, having reached remission in the

hands of an incompetent dr.)

What's especially sad is that of these 80%, not too many know how to

administer RAI to achieve maximum success and how to treat patients

post-RAI. It is important to stabilize a patient prior to RAI with ATD's

to minimum thyroid storm post-RAI; it is important NOT to let a patient

get badly hypo post RAI which means frequent monitoring and possible use

of ATD's even post RAI; and while I would not brand a dr. irresponsible

for suggesting steroids pre-RAI to reduce the risk of later TED (given

the current info I can understand this approach while not subscribing to

it) recommending RAI when TED already presents itself is an absolute

dealbreaker!!!

I have to confess to skimming and having been too quick to press delete

lately. So where exactly are you as far as your basic labwork after a

year on Tap? Why would you want to switch to PTU if you want to wait till

summer for a pregnancy if you might be in remission by then? (I'm not

confusing you with someone else, am I?)

If I were faced with Graves and wanting to start a family (I'm not; I

started a long time ago but I've thought this through) I would consider

trying if I were on a very low dose of PTU. I would also very seriously

consider surgery. Though Simon became hyper again after a partial

thyroidectomy it's not too common. The hypothyroidism post surgery is

much easier to regulate than post RAI, surgery does not increase the

antibody activity that's such a factor in TED, as Jody explains(BTW, save

Jody's posts and reread them; hers is the voice of experience), doesn't

carry the short term (exposure to family) and long term risks that RAI

does, wouldn't leave me with the cloud of " what if the GD comes back

postpartum " among other reasons. I don't mean to suggest that hypoT is

ever a piece of cake, just that it's a different kettle of fish (ok, so

I'm hungry) when surgery-induced vs. RAI induced.

Take your time and take care, Fay

________________________________________________________________

Sign Up for Juno Platinum Internet Access Today

Only $9.95 per month!

Visit www.juno.com

[Guest guest]

Hi Fay,

Thanks for getting back to me. I am really leaning against RAI at least until my

eyes settle down but right now no one can tell there is something wrong with

them but me. Not even my husband so I am very lucky so far. I also think I have

a very light case because I was able to stabilize for 6 months on just 1 pill of

methimazole/day. I know everyone says PTU is safe but I just went to the

pharmacy and they printed out the report and it said that it does cause harm to

the fetus. I just need to figure out what kind of harm and weigh the options.

Why do you think steroids w/ RAI is irresponsible? From all the studies I can

tell this helps the eyes alot. I have also read that they don't always work

however so I am trying to figure out what my chances are that they would get

worse if I used steroids. I am also going to try to go to a genetic counselor to

discuss these possibilities.

Once I am convinced PTU will not cause any permanent damage to my baby, I sure I

will stay clear of RAI at least till my eyes calm down.

Margaret

Re: PTU vs. RAI

Hi and welcome.

You've come to a great place to get information; I assume that while yes,

there is a strong anti-RAI bias here you can discriminate between the

solid info and the random rhetoric.

It isn't easy to accept that 80% of drs. will recommend something that is

not in the patient's best interests, but welcome to 21st century

medicine. Given that the overwhelming majority of drs. are pro RAI, most

of us are stuck getting treatment from them. Actually, I'd like to think

that a number of these drs. will use ATD's when asked and may even be

competent using them. (I wouldn't know, having reached remission in the

hands of an incompetent dr.)

What's especially sad is that of these 80%, not too many know how to

administer RAI to achieve maximum success and how to treat patients

post-RAI. It is important to stabilize a patient prior to RAI with ATD's

to minimum thyroid storm post-RAI; it is important NOT to let a patient

get badly hypo post RAI which means frequent monitoring and possible use

of ATD's even post RAI; and while I would not brand a dr. irresponsible

for suggesting steroids pre-RAI to reduce the risk of later TED (given

the current info I can understand this approach while not subscribing to

it) recommending RAI when TED already presents itself is an absolute

dealbreaker!!!

I have to confess to skimming and having been too quick to press delete

lately. So where exactly are you as far as your basic labwork after a

year on Tap? Why would you want to switch to PTU if you want to wait till

summer for a pregnancy if you might be in remission by then? (I'm not

confusing you with someone else, am I?)

If I were faced with Graves and wanting to start a family (I'm not; I

started a long time ago but I've thought this through) I would consider

trying if I were on a very low dose of PTU. I would also very seriously

consider surgery. Though Simon became hyper again after a partial

thyroidectomy it's not too common. The hypothyroidism post surgery is

much easier to regulate than post RAI, surgery does not increase the

antibody activity that's such a factor in TED, as Jody explains(BTW, save

Jody's posts and reread them; hers is the voice of experience), doesn't

carry the short term (exposure to family) and long term risks that RAI

does, wouldn't leave me with the cloud of " what if the GD comes back

postpartum " among other reasons. I don't mean to suggest that hypoT is

ever a piece of cake, just that it's a different kettle of fish (ok, so

I'm hungry) when surgery-induced vs. RAI induced.

Take your time and take care, Fay

________________________________________________________________

Sign Up for Juno Platinum Internet Access Today

Only $9.95 per month!

Visit www.juno.com

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

The Graves' list is intended for informational purposes only and is not

intended to replace expert medical care.

Please consult your doctor before changing or trying new treatments.

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

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]

Where did you find this information? This is the most specific I have found so

far. All I have read is that radiation therapy is only 30% effective.

Re: PTU vs. RAI

Hi,

Steroids prevent GO from worsening or developing immediately after RAI, but

there are no long-term studies showing if the people using steroids developed

GO later. Hale, the president of the American Foundation of Thyroid

Patients used steroids with RAI and still developed GO bad enough to

eventually require surgery. Since antibodies can be increased for up to 10

years after RAI, the benefits of short-term steroids would be limited. The

risk is small but it is significant. Take care, Elaine

[Guest guest]

Where did you find this information? This is the most specific I have found so

far. All I have read is that radiation therapy is only 30% effective.

Re: PTU vs. RAI

Hi,

Steroids prevent GO from worsening or developing immediately after RAI, but

there are no long-term studies showing if the people using steroids developed

GO later. Hale, the president of the American Foundation of Thyroid

Patients used steroids with RAI and still developed GO bad enough to

eventually require surgery. Since antibodies can be increased for up to 10

years after RAI, the benefits of short-term steroids would be limited. The

risk is small but it is significant. Take care, Elaine

[Guest guest]

I read the same thing on my PTU(about harm to fetus) but was told that is

only on higher doses.

[Guest guest]

Re: PTU vs. RAI

I read the same thing on my PTU(about harm to fetus) but was told that is

only on higher doses.

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

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]

,

So did you have a baby on PTU? If there is a risk to the baby, is it permanent?

I read somewhere that if there is harm to the baby it is temporary and

treatable.

Margaret

Re: PTU vs. RAI

I read the same thing on my PTU(about harm to fetus) but was told that is

only on higher doses.

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

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]

,

So did you have a baby on PTU? If there is a risk to the baby, is it permanent?

I read somewhere that if there is harm to the baby it is temporary and

treatable.

Margaret

Re: PTU vs. RAI

I read the same thing on my PTU(about harm to fetus) but was told that is

only on higher doses.

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

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,

I didn't have a baby on PTU,but a bunch of women in this group have. I was

dx with hyperthyroidism while I was pregnant,was closely watched & my

symptoms were mild so I never took drugs. My aunt had a baby while on PTU

and she is fine,thought she was a few weeks premature.

[Guest guest]

> Why do you think steroids w/ RAI is irresponsible? From all the

> studies I can tell this helps the eyes alot.

A few points here:

- Drs. will administer steroids in conjunction with RAI to minimize the

risk of developing TED due to RAI. Whether or not this works, short or

long term, is up for debate.

-As has been explained, RAI can significantly (enough for me, at least)

increase the risk of developing TED, and I think the odds are even

greater for exacerbating TED that was manifest before RAI.

-I will be charitable enough to give endos some points for using steroids

with RAI but way beyond no points for even considering doing RAI if TED

is already present. (Is that where I used the word irresponsible, if I

did at all?)

-The effect of steroids on the immune system should not be discounted.

Steroids affect the body in many ways as Jody mentioned and I would study

this much more than just the statistics; get in touch with people, not

just numbers, who've been through this.

There have not been anywhere near enough studies on many aspects of

treatment for GD and I for one have benefited greatly from what some call

anecdotal references but may best be termed empirical evidence. Here's a

for instance: how weaning, that is getting back to some hormonal stasis,

can help remission occur in GD that occurs post-partum. My GYN said this

sounded quite logical; however, there were no studies I found. I spent

years being pregnant and/or nursing and while there are many factors

contributing to my going into remission I think weaning was a major one.

So I would say the same may hold with TED - you must speak to people

who've been through it before embarking on any treatment. G-d willing you

should never get to that point.

Take care, fay

________________________________________________________________

Sign Up for Juno Platinum Internet Access Today

Only $9.95 per month!

Visit www.juno.com

[Guest guest]

> Why do you think steroids w/ RAI is irresponsible? From all the

> studies I can tell this helps the eyes alot.

A few points here:

- Drs. will administer steroids in conjunction with RAI to minimize the

risk of developing TED due to RAI. Whether or not this works, short or

long term, is up for debate.

-As has been explained, RAI can significantly (enough for me, at least)

increase the risk of developing TED, and I think the odds are even

greater for exacerbating TED that was manifest before RAI.

-I will be charitable enough to give endos some points for using steroids

with RAI but way beyond no points for even considering doing RAI if TED

is already present. (Is that where I used the word irresponsible, if I

did at all?)

-The effect of steroids on the immune system should not be discounted.

Steroids affect the body in many ways as Jody mentioned and I would study

this much more than just the statistics; get in touch with people, not

just numbers, who've been through this.

There have not been anywhere near enough studies on many aspects of

treatment for GD and I for one have benefited greatly from what some call

anecdotal references but may best be termed empirical evidence. Here's a

for instance: how weaning, that is getting back to some hormonal stasis,

can help remission occur in GD that occurs post-partum. My GYN said this

sounded quite logical; however, there were no studies I found. I spent

years being pregnant and/or nursing and while there are many factors

contributing to my going into remission I think weaning was a major one.

So I would say the same may hold with TED - you must speak to people

who've been through it before embarking on any treatment. G-d willing you

should never get to that point.

Take care, fay

________________________________________________________________

Sign Up for Juno Platinum Internet Access Today

Only $9.95 per month!

Visit www.juno.com

[Guest guest]

> Why do you think steroids w/ RAI is irresponsible? From all the

> studies I can tell this helps the eyes alot.

A few points here:

- Drs. will administer steroids in conjunction with RAI to minimize the

risk of developing TED due to RAI. Whether or not this works, short or

long term, is up for debate.

-As has been explained, RAI can significantly (enough for me, at least)

increase the risk of developing TED, and I think the odds are even

greater for exacerbating TED that was manifest before RAI.

-I will be charitable enough to give endos some points for using steroids

with RAI but way beyond no points for even considering doing RAI if TED

is already present. (Is that where I used the word irresponsible, if I

did at all?)

-The effect of steroids on the immune system should not be discounted.

Steroids affect the body in many ways as Jody mentioned and I would study

this much more than just the statistics; get in touch with people, not

just numbers, who've been through this.

There have not been anywhere near enough studies on many aspects of

treatment for GD and I for one have benefited greatly from what some call

anecdotal references but may best be termed empirical evidence. Here's a

for instance: how weaning, that is getting back to some hormonal stasis,

can help remission occur in GD that occurs post-partum. My GYN said this

sounded quite logical; however, there were no studies I found. I spent

years being pregnant and/or nursing and while there are many factors

contributing to my going into remission I think weaning was a major one.

So I would say the same may hold with TED - you must speak to people

who've been through it before embarking on any treatment. G-d willing you

should never get to that point.

Take care, fay

________________________________________________________________

Sign Up for Juno Platinum Internet Access Today

Only $9.95 per month!

Visit www.juno.com

[Guest guest]

Hello,

You can read my story and see pictures of me before and after RAI at the URL

below!

God bless,

http://hometown.aol.com/lisareynolds64/myhomepage/personal.htmlhttp://ho\

metown.aol.com/lisareynolds64/myhomepage/personal.html

[Guest guest]

Hello,

You can read my story and see pictures of me before and after RAI at the URL

below!

God bless,

http://hometown.aol.com/lisareynolds64/myhomepage/personal.htmlhttp://ho\

metown.aol.com/lisareynolds64/myhomepage/personal.html

[Guest guest]

... I am so sorry this had to happen!! It just makes me sick.

And to think, I was about to consent to RAI when you found me

wandering the net and directed me here. Now here I am... 2 months

later, on 150mg PTU with levels that are teetering on normal. Thank

God.

I belong to a group of discussion boards related to trying to

conceive. One of them is focused on thyroid issues. I try to direct

people here and warn them about RAI. It's funny the flack I

sometimes get... The " My doctor recommended RAI and said it was

perfectly safe and I'm fine... " responses. But if one person can be

spared what you've gone through I think I've passed the karma along.

I don't know much about this all as I am still learning. But I hope

that there is something they can do to make this better for you.

Clair

Diagnosed with Graves @ 19

BRT Remission for 5 years

Relapse diagnosed 10/02, likely from pregnancy

8th week on 50mg PTU 3x per day

Levels close to normal

More labs 12/30

> Hello,

>

> You can read my story and see pictures of me before and after RAI

at the URL

> below!

>

> God bless,

>

> http://hometown.aol.com/lisareynolds64/myhomepage/personal.htmlhttp://hometown.aol.com/lisareynolds64/myhomepage/personal.html

>

>

>

[Guest guest]

... I am so sorry this had to happen!! It just makes me sick.

And to think, I was about to consent to RAI when you found me

wandering the net and directed me here. Now here I am... 2 months

later, on 150mg PTU with levels that are teetering on normal. Thank

God.

I belong to a group of discussion boards related to trying to

conceive. One of them is focused on thyroid issues. I try to direct

people here and warn them about RAI. It's funny the flack I

sometimes get... The " My doctor recommended RAI and said it was

perfectly safe and I'm fine... " responses. But if one person can be

spared what you've gone through I think I've passed the karma along.

I don't know much about this all as I am still learning. But I hope

that there is something they can do to make this better for you.

Clair

Diagnosed with Graves @ 19

BRT Remission for 5 years

Relapse diagnosed 10/02, likely from pregnancy

8th week on 50mg PTU 3x per day

Levels close to normal

More labs 12/30

> Hello,

>

> You can read my story and see pictures of me before and after RAI

at the URL

> below!

>

> God bless,

>

> http://hometown.aol.com/lisareynolds64/myhomepage/personal.htmlhttp://hometown.aol.com/lisareynolds64/myhomepage/personal.html

>

>

>

[Guest guest]

Clair,

Can you tell me the what the discussion board is for trying to conceive with

thyroid problems?

Margaret

Re: PTU vs. RAI

... I am so sorry this had to happen!! It just makes me sick.

And to think, I was about to consent to RAI when you found me

wandering the net and directed me here. Now here I am... 2 months

later, on 150mg PTU with levels that are teetering on normal. Thank

God.

I belong to a group of discussion boards related to trying to

conceive. One of them is focused on thyroid issues. I try to direct

people here and warn them about RAI. It's funny the flack I

sometimes get... The " My doctor recommended RAI and said it was

perfectly safe and I'm fine... " responses. But if one person can be

spared what you've gone through I think I've passed the karma along.

I don't know much about this all as I am still learning. But I hope

that there is something they can do to make this better for you.

Clair

Diagnosed with Graves @ 19

BRT Remission for 5 years

Relapse diagnosed 10/02, likely from pregnancy

8th week on 50mg PTU 3x per day

Levels close to normal

More labs 12/30

> Hello,

>

> You can read my story and see pictures of me before and after RAI

at the URL

> below!

>

> God bless,

>

> http://hometown.aol.com/lisareynolds64/myhomepage/personal.html "

>http://hometown.aol.com/lisareynolds64/myhomepage/personal.html

>

>

>

[Guest guest]

Clair,

Can you tell me the what the discussion board is for trying to conceive with

thyroid problems?

Margaret

Re: PTU vs. RAI

... I am so sorry this had to happen!! It just makes me sick.

And to think, I was about to consent to RAI when you found me

wandering the net and directed me here. Now here I am... 2 months

later, on 150mg PTU with levels that are teetering on normal. Thank

God.

I belong to a group of discussion boards related to trying to

conceive. One of them is focused on thyroid issues. I try to direct

people here and warn them about RAI. It's funny the flack I

sometimes get... The " My doctor recommended RAI and said it was

perfectly safe and I'm fine... " responses. But if one person can be

spared what you've gone through I think I've passed the karma along.

I don't know much about this all as I am still learning. But I hope

that there is something they can do to make this better for you.

Clair

Diagnosed with Graves @ 19

BRT Remission for 5 years

Relapse diagnosed 10/02, likely from pregnancy

8th week on 50mg PTU 3x per day

Levels close to normal

More labs 12/30

> Hello,

>

> You can read my story and see pictures of me before and after RAI

at the URL

> below!

>

> God bless,

>

> http://hometown.aol.com/lisareynolds64/myhomepage/personal.html "

>http://hometown.aol.com/lisareynolds64/myhomepage/personal.html

>

>

>