Re: New Here (v. long msg)

[Guest guest]

Hi Clair,

I am so glad you joined this forum! I know that you will get some positive

feedback from our preggers and new mommies.

God bless,

Hashi's, Graves, TED worsened by RAI Sept. 2001

http://www.mediboard.com/ubb/ultimatebb.php?ubb=get_topic;f=1;t=001091;p=1

[Guest guest]

Hi Clair,

Welcome to the group.

It's entirely possible that you weren't actually in remission after being on

block and replace meds (the ATD and the thyroid hormone protocol).

Unless your doctor was measuring your TSI levels and they'd fallen to <2, it

would be hard to tell. And many doctors just assume that after a certain

time, patients are in remission. But often the patients have responded to the

meds but aren't in remission. By this I mean they're still producing TSI.

These are the antibodies that cause hyperthyroidism in Graves' disease. I

mention this in case one of your doctors gets the idea that the ATDs didn't

work for you. ATDs most always work if people stay on them until they're

truly in remission. And then they have to be tapered off the meds slowly.

If you were in remission, changes associated with pregnancy can trigger a

return of GD or you can develop postpartum thyroiditis, even in instances

where pregnancy does not progress to term.

These symptoms often spontaneously resolve within a year.

It's encouraging that your doctor is saying that your thyroid hormone levels

aren't too high. You're probably a good candidate for ATDs, but in pregnancy

you want to use PTU, not Tapazole. Tap crosses the placental barrier readily

and can move into the fetal circulation, possibly causing hypothyroidism. PTU

may cross the barrier but not nearly as readily. PTU is safe in doses less

than 200 mg/day, and you would likely need a lower dose if your symptoms are

mild. Also, your dose is reduced after about 8 weeks.

Current studies advise waiting 1 year after RAI to conceive, but in most

countries in Europe RAI is never used in women of childbearing age. There

aren't enough long term studies to assure its safety. Also, fertility

problems are much more prevalent in hypothyroidism.

I hope that when you find the right doctor he'll also run tests for

anticardiolipin antibodies and lupus anticoagulant. These are antibodies that

cause clotting abnomalities. This condition is the primary cause of

miscarriage, and today doctors recommend these tests for anyone with a

history of miscarriage. This condition, which is known as antiphospholipid

syndrome, frequently occurs in women with autoimmune thyroid disease and is

easy to treat once it's diagnosed.

You might want to read the page on pregnancy and childbirth on my website.

Take care, Elaine

Please visit my web site at http://daisyelaine_co.tripod.com/gravesdisease/

[Guest guest]

Hi Clair,

Welcome to the group.

It's entirely possible that you weren't actually in remission after being on

block and replace meds (the ATD and the thyroid hormone protocol).

Unless your doctor was measuring your TSI levels and they'd fallen to <2, it

would be hard to tell. And many doctors just assume that after a certain

time, patients are in remission. But often the patients have responded to the

meds but aren't in remission. By this I mean they're still producing TSI.

These are the antibodies that cause hyperthyroidism in Graves' disease. I

mention this in case one of your doctors gets the idea that the ATDs didn't

work for you. ATDs most always work if people stay on them until they're

truly in remission. And then they have to be tapered off the meds slowly.

If you were in remission, changes associated with pregnancy can trigger a

return of GD or you can develop postpartum thyroiditis, even in instances

where pregnancy does not progress to term.

These symptoms often spontaneously resolve within a year.

It's encouraging that your doctor is saying that your thyroid hormone levels

aren't too high. You're probably a good candidate for ATDs, but in pregnancy

you want to use PTU, not Tapazole. Tap crosses the placental barrier readily

and can move into the fetal circulation, possibly causing hypothyroidism. PTU

may cross the barrier but not nearly as readily. PTU is safe in doses less

than 200 mg/day, and you would likely need a lower dose if your symptoms are

mild. Also, your dose is reduced after about 8 weeks.

Current studies advise waiting 1 year after RAI to conceive, but in most

countries in Europe RAI is never used in women of childbearing age. There

aren't enough long term studies to assure its safety. Also, fertility

problems are much more prevalent in hypothyroidism.

I hope that when you find the right doctor he'll also run tests for

anticardiolipin antibodies and lupus anticoagulant. These are antibodies that

cause clotting abnomalities. This condition is the primary cause of

miscarriage, and today doctors recommend these tests for anyone with a

history of miscarriage. This condition, which is known as antiphospholipid

syndrome, frequently occurs in women with autoimmune thyroid disease and is

easy to treat once it's diagnosed.

You might want to read the page on pregnancy and childbirth on my website.

Take care, Elaine

Please visit my web site at http://daisyelaine_co.tripod.com/gravesdisease/

[Guest guest]

Clair Baca wrote:

>

> And then there's surgery....

>

> I feel like all treatment options suck.

Hi Clair,

no one here is arguing that one, but all is not lost....

You can take PTU during pregnancy, it is the older drug, it

predates Tapazole, tastes yucky, but is safer during pregnancy

(but not lactation when Tapazole is preferred apparently).

Surgery - especially partial thyroidectomy is the quickest

option, but it doesn't sound like you need anything quite that

drastic.

You'll find many hits of " pregnancy " in the group archive, which

is searchable at www.yahoo.com, click " groups " and hopefully

it'll remember you, or log in again.

There are plenty of successful pregnancy stories in the archive!

Simon

[Guest guest]

Clair Baca wrote:

>

> And then there's surgery....

>

> I feel like all treatment options suck.

Hi Clair,

no one here is arguing that one, but all is not lost....

You can take PTU during pregnancy, it is the older drug, it

predates Tapazole, tastes yucky, but is safer during pregnancy

(but not lactation when Tapazole is preferred apparently).

Surgery - especially partial thyroidectomy is the quickest

option, but it doesn't sound like you need anything quite that

drastic.

You'll find many hits of " pregnancy " in the group archive, which

is searchable at www.yahoo.com, click " groups " and hopefully

it'll remember you, or log in again.

There are plenty of successful pregnancy stories in the archive!

Simon

[Guest guest]

Clair Baca wrote:

>

> And then there's surgery....

>

> I feel like all treatment options suck.

Hi Clair,

no one here is arguing that one, but all is not lost....

You can take PTU during pregnancy, it is the older drug, it

predates Tapazole, tastes yucky, but is safer during pregnancy

(but not lactation when Tapazole is preferred apparently).

Surgery - especially partial thyroidectomy is the quickest

option, but it doesn't sound like you need anything quite that

drastic.

You'll find many hits of " pregnancy " in the group archive, which

is searchable at www.yahoo.com, click " groups " and hopefully

it'll remember you, or log in again.

There are plenty of successful pregnancy stories in the archive!

Simon

[Guest guest]

Thank you, , for directing me here.

Clair

> Hi Clair,

>

> I am so glad you joined this forum! I know that you will get some

positive

> feedback from our preggers and new mommies.

>

> God bless,

>

>

> Hashi's, Graves, TED worsened by RAI Sept. 2001

> http://www.mediboard.com/ubb/ultimatebb.php?

ubb=get_topic;f=1;t=001091;p=1

[Guest guest]

Thank you, , for directing me here.

Clair

> Hi Clair,

>

> I am so glad you joined this forum! I know that you will get some

positive

> feedback from our preggers and new mommies.

>

> God bless,

>

>

> Hashi's, Graves, TED worsened by RAI Sept. 2001

> http://www.mediboard.com/ubb/ultimatebb.php?

ubb=get_topic;f=1;t=001091;p=1

[Guest guest]

Thank you, , for directing me here.

Clair

> Hi Clair,

>

> I am so glad you joined this forum! I know that you will get some

positive

> feedback from our preggers and new mommies.

>

> God bless,

>

>

> Hashi's, Graves, TED worsened by RAI Sept. 2001

> http://www.mediboard.com/ubb/ultimatebb.php?

ubb=get_topic;f=1;t=001091;p=1

[Guest guest]

Hi Clair and Welcome.

I'm kind of new around here myself on this list, but I was diagnosed back in

1997. First off, I am so very, very sorry for the loss of your daughter

Simone. Your pain is one that I, unfortunately, know only too well. My first

son was stillborn at 33 weeks. The most painful experience I ever went

through, yet I learned a lot from that experience about parenthood.

Okay, now let's move on towards your next pregnancy. My first advice to you

is don't rush into RAI, it isn't a " cure " and means a lifelong dependency on

drugs. As you already know and mention, being hypOt has it's own set of

problems. Many, many woman have been successfully treated with PTU during

their pregnancies and delivered healthy babies. You don't need to kill off

your thyroid to have a good pregnancy. Secondary infertility may have no

relation to your thyroid at all either. My sister had no trouble conceiving

her daughter and spent the next ten years tryig to conceive again. The

fertility specialists could find no reason for the trouble.

I understand that need to conceive and deliver a healthy baby after a loss.

The emptiness hurts, I know. Part of your problem could be stress also. You

are outting a lot of stress on yourself to conceive again, and you're also a

nervous wreck about actually being pregnant again I'd be willing to bet.

And you are correct, our treatment options aren't exactly the best.

Personally, sticking with ATDs and hoping for remission sounds better than

killing my thyroid forever, no turning back forever, with radiation.I know,

I don't have any solutions other than try and find a good doctor, get on

some PTU.

in MA, USA

Diagnosed w/Graves, 03/1997

So far refusing RAI Treatment and Surgery!!!

Remission from 06/2000 to 07/2002, suspected " hyper " again.

Currently not taking any meds.

[Guest guest]

Hi Clair and Welcome.

I'm kind of new around here myself on this list, but I was diagnosed back in

1997. First off, I am so very, very sorry for the loss of your daughter

Simone. Your pain is one that I, unfortunately, know only too well. My first

son was stillborn at 33 weeks. The most painful experience I ever went

through, yet I learned a lot from that experience about parenthood.

Okay, now let's move on towards your next pregnancy. My first advice to you

is don't rush into RAI, it isn't a " cure " and means a lifelong dependency on

drugs. As you already know and mention, being hypOt has it's own set of

problems. Many, many woman have been successfully treated with PTU during

their pregnancies and delivered healthy babies. You don't need to kill off

your thyroid to have a good pregnancy. Secondary infertility may have no

relation to your thyroid at all either. My sister had no trouble conceiving

her daughter and spent the next ten years tryig to conceive again. The

fertility specialists could find no reason for the trouble.

I understand that need to conceive and deliver a healthy baby after a loss.

The emptiness hurts, I know. Part of your problem could be stress also. You

are outting a lot of stress on yourself to conceive again, and you're also a

nervous wreck about actually being pregnant again I'd be willing to bet.

And you are correct, our treatment options aren't exactly the best.

Personally, sticking with ATDs and hoping for remission sounds better than

killing my thyroid forever, no turning back forever, with radiation.I know,

I don't have any solutions other than try and find a good doctor, get on

some PTU.

in MA, USA

Diagnosed w/Graves, 03/1997

So far refusing RAI Treatment and Surgery!!!

Remission from 06/2000 to 07/2002, suspected " hyper " again.

Currently not taking any meds.

[Guest guest]

Hi Clair and Welcome.

I'm kind of new around here myself on this list, but I was diagnosed back in

1997. First off, I am so very, very sorry for the loss of your daughter

Simone. Your pain is one that I, unfortunately, know only too well. My first

son was stillborn at 33 weeks. The most painful experience I ever went

through, yet I learned a lot from that experience about parenthood.

Okay, now let's move on towards your next pregnancy. My first advice to you

is don't rush into RAI, it isn't a " cure " and means a lifelong dependency on

drugs. As you already know and mention, being hypOt has it's own set of

problems. Many, many woman have been successfully treated with PTU during

their pregnancies and delivered healthy babies. You don't need to kill off

your thyroid to have a good pregnancy. Secondary infertility may have no

relation to your thyroid at all either. My sister had no trouble conceiving

her daughter and spent the next ten years tryig to conceive again. The

fertility specialists could find no reason for the trouble.

I understand that need to conceive and deliver a healthy baby after a loss.

The emptiness hurts, I know. Part of your problem could be stress also. You

are outting a lot of stress on yourself to conceive again, and you're also a

nervous wreck about actually being pregnant again I'd be willing to bet.

And you are correct, our treatment options aren't exactly the best.

Personally, sticking with ATDs and hoping for remission sounds better than

killing my thyroid forever, no turning back forever, with radiation.I know,

I don't have any solutions other than try and find a good doctor, get on

some PTU.

in MA, USA

Diagnosed w/Graves, 03/1997

So far refusing RAI Treatment and Surgery!!!

Remission from 06/2000 to 07/2002, suspected " hyper " again.

Currently not taking any meds.

[Guest guest]

Thanks for the information Simon. I'll have to look into it. I seem

to be a medical mess, while still appearing fairly normal. My

thyroid levels are not that elevated, yet I am sick with symptoms.

And the sad thing is that when I was in college I just did whatever

the doctor said and did no research of my own. So now I feel like I

am dealing with this for the first time. I ignored all my symptoms

chalking them up to stress or just after effects of my pregnancy. I

was missing the extreme fatigue this time so I assumed my thyroid

could not be a problem.

I am having insurance issues (namely, the new medical group I joined

has suddenly changed their mind about accepting me and all other

Aetna patients) right now and am working through them. See, the

doctor I trust to treat this most is my old PCP, who I had to switch

from in order to see my RE. Right now I am trying to get back into

the medical group I was just ousted from so I can be in the same

group as my RE. But part of me wants to forget about the RE and just

see my old doctor. My insurance company has promised that because I

have infertility coverage, they are obligated to send me to an RE

regardless of the doctors contracted through my medical group. And I

assume the RE they will send me to will be the one I currently see

since he is the only one in the area... This is all so confusing.

And the sad part is I absolutely don't trust new doctors because of

the experience I had when I lost my daughter...

Ugh... OK, instead of whining more, I have an actual question. Is a

doctor of internal medicine as capable of treating Graves as an

endocrinologist. My old PCP is an int. med. doctor, not an endo.

Can an internal med doctor perform surgery for Graves?

Thanks for listening to me complain =)

Clair

> >

> > And then there's surgery....

> >

> > I feel like all treatment options suck.

>

> Hi Clair,

>

> no one here is arguing that one, but all is not lost....

>

> You can take PTU during pregnancy, it is the older drug, it

> predates Tapazole, tastes yucky, but is safer during pregnancy

> (but not lactation when Tapazole is preferred apparently).

>

> Surgery - especially partial thyroidectomy is the quickest

> option, but it doesn't sound like you need anything quite that

> drastic.

>

> You'll find many hits of " pregnancy " in the group archive, which

> is searchable at www.yahoo.com, click " groups " and hopefully

> it'll remember you, or log in again.

>

> There are plenty of successful pregnancy stories in the archive!

>

> Simon

[Guest guest]

Thanks for the information Simon. I'll have to look into it. I seem

to be a medical mess, while still appearing fairly normal. My

thyroid levels are not that elevated, yet I am sick with symptoms.

And the sad thing is that when I was in college I just did whatever

the doctor said and did no research of my own. So now I feel like I

am dealing with this for the first time. I ignored all my symptoms

chalking them up to stress or just after effects of my pregnancy. I

was missing the extreme fatigue this time so I assumed my thyroid

could not be a problem.

I am having insurance issues (namely, the new medical group I joined

has suddenly changed their mind about accepting me and all other

Aetna patients) right now and am working through them. See, the

doctor I trust to treat this most is my old PCP, who I had to switch

from in order to see my RE. Right now I am trying to get back into

the medical group I was just ousted from so I can be in the same

group as my RE. But part of me wants to forget about the RE and just

see my old doctor. My insurance company has promised that because I

have infertility coverage, they are obligated to send me to an RE

regardless of the doctors contracted through my medical group. And I

assume the RE they will send me to will be the one I currently see

since he is the only one in the area... This is all so confusing.

And the sad part is I absolutely don't trust new doctors because of

the experience I had when I lost my daughter...

Ugh... OK, instead of whining more, I have an actual question. Is a

doctor of internal medicine as capable of treating Graves as an

endocrinologist. My old PCP is an int. med. doctor, not an endo.

Can an internal med doctor perform surgery for Graves?

Thanks for listening to me complain =)

Clair

> >

> > And then there's surgery....

> >

> > I feel like all treatment options suck.

>

> Hi Clair,

>

> no one here is arguing that one, but all is not lost....

>

> You can take PTU during pregnancy, it is the older drug, it

> predates Tapazole, tastes yucky, but is safer during pregnancy

> (but not lactation when Tapazole is preferred apparently).

>

> Surgery - especially partial thyroidectomy is the quickest

> option, but it doesn't sound like you need anything quite that

> drastic.

>

> You'll find many hits of " pregnancy " in the group archive, which

> is searchable at www.yahoo.com, click " groups " and hopefully

> it'll remember you, or log in again.

>

> There are plenty of successful pregnancy stories in the archive!

>

> Simon

[Guest guest]

Hi and thanks for the welcome. You are right... I am stressed

beyond the limit. First, losing Riley was, as you said, the most

difficult thing I could ever imagine. I still can't make it more

than a week without missing her so much and being so shocked by her

absence that I crumble in tears.

And then, there is infertility to top that off. With no reason for

it, it's hard to not stress. The ups and downs are killer. Hopeful

one moment and in utter despair the next. I was hoping my Graves

would be the culprit. I am not so sure now because of what my RE

said, but I will consult with another doctor on his suggestion. I

want this to be the reason.

I have heard that PTU can be safe during pregnancy. But I never

actually took that. My RE was so dismal about all of this... It was

like, no you can't get pregnant on meds, no this is not the reason

you haven't conceived, no this isn't why you had a miscarriage in

February... Just do RAI and call me in 6 months. Normally he isn't

like that. I think my Graves scared him... or perhaps the fact that

he hadn't caught it. Or maybe the fact that I walk around with

the " Sue Happy Patient " reputation because we successfully sued the

OBGYN who caused my daughter's death for negligence and wrongful

death... I am happy I sued and will not hide it or regret it much to

the dismay of many doctors.

Anyway, RAI... My mom, a nurse, and grandmother lean toward it. I

feel most hesitant about this treatment. But I almost feel like it's

my only option. I am thinking of seeing my old doctor while I wait

for my insurance mess to settle just to see what he recommends. In

fact, I am thinking more and more of just going back to him and

worrying about my infertility doctor later. I trust him. He is a

family friend. And he helped me last time. I am confident he won't

shove the cheapest treatment down my throat all the while relishing

in capturing a new lifelong patient. I know I sound disenchanted

with the medical system and HMOs. And I am. I don't trust them for

a second and already told my husband I would not do any treatment

without consulting my trusted doctor...

I just feel hopeless. There I was at 24 all ready to start my

family... Happily married with my daughter on the way. How the heck

did I get back here... I feel like I will never have another child.

And this stupid thyroid problem is so damn annoying... But somehow

predictable. It's like life waited to throw everything it could at

me for 2 years straight.

And there I go whining again. I will talk to my doctor(s) about drug

therapy while pregnant.

Thanks for your help and welcome.

Clair

> Hi Clair and Welcome.

>

> I'm kind of new around here myself on this list, but I was

diagnosed back in

> 1997. First off, I am so very, very sorry for the loss of your

daughter

> Simone. Your pain is one that I, unfortunately, know only too well.

My first

> son was stillborn at 33 weeks. The most painful experience I ever

went

> through, yet I learned a lot from that experience about parenthood.

>

> Okay, now let's move on towards your next pregnancy. My first

advice to you

> is don't rush into RAI, it isn't a " cure " and means a lifelong

dependency on

> drugs. As you already know and mention, being hypOt has it's own

set of

> problems. Many, many woman have been successfully treated with PTU

during

> their pregnancies and delivered healthy babies. You don't need to

kill off

> your thyroid to have a good pregnancy. Secondary infertility may

have no

> relation to your thyroid at all either. My sister had no trouble

conceiving

> her daughter and spent the next ten years tryig to conceive again.

The

> fertility specialists could find no reason for the trouble.

>

> I understand that need to conceive and deliver a healthy baby after

a loss.

> The emptiness hurts, I know. Part of your problem could be stress

also. You

> are outting a lot of stress on yourself to conceive again, and

you're also a

> nervous wreck about actually being pregnant again I'd be willing to

bet.

>

> And you are correct, our treatment options aren't exactly the best.

> Personally, sticking with ATDs and hoping for remission sounds

better than

> killing my thyroid forever, no turning back forever, with

radiation.I know,

> I don't have any solutions other than try and find a good doctor,

get on

> some PTU.

>

> in MA, USA

> Diagnosed w/Graves, 03/1997

> So far refusing RAI Treatment and Surgery!!!

> Remission from 06/2000 to 07/2002, suspected " hyper " again.

> Currently not taking any meds.

[Guest guest]

Hi and thanks for the welcome. You are right... I am stressed

beyond the limit. First, losing Riley was, as you said, the most

difficult thing I could ever imagine. I still can't make it more

than a week without missing her so much and being so shocked by her

absence that I crumble in tears.

And then, there is infertility to top that off. With no reason for

it, it's hard to not stress. The ups and downs are killer. Hopeful

one moment and in utter despair the next. I was hoping my Graves

would be the culprit. I am not so sure now because of what my RE

said, but I will consult with another doctor on his suggestion. I

want this to be the reason.

I have heard that PTU can be safe during pregnancy. But I never

actually took that. My RE was so dismal about all of this... It was

like, no you can't get pregnant on meds, no this is not the reason

you haven't conceived, no this isn't why you had a miscarriage in

February... Just do RAI and call me in 6 months. Normally he isn't

like that. I think my Graves scared him... or perhaps the fact that

he hadn't caught it. Or maybe the fact that I walk around with

the " Sue Happy Patient " reputation because we successfully sued the

OBGYN who caused my daughter's death for negligence and wrongful

death... I am happy I sued and will not hide it or regret it much to

the dismay of many doctors.

Anyway, RAI... My mom, a nurse, and grandmother lean toward it. I

feel most hesitant about this treatment. But I almost feel like it's

my only option. I am thinking of seeing my old doctor while I wait

for my insurance mess to settle just to see what he recommends. In

fact, I am thinking more and more of just going back to him and

worrying about my infertility doctor later. I trust him. He is a

family friend. And he helped me last time. I am confident he won't

shove the cheapest treatment down my throat all the while relishing

in capturing a new lifelong patient. I know I sound disenchanted

with the medical system and HMOs. And I am. I don't trust them for

a second and already told my husband I would not do any treatment

without consulting my trusted doctor...

I just feel hopeless. There I was at 24 all ready to start my

family... Happily married with my daughter on the way. How the heck

did I get back here... I feel like I will never have another child.

And this stupid thyroid problem is so damn annoying... But somehow

predictable. It's like life waited to throw everything it could at

me for 2 years straight.

And there I go whining again. I will talk to my doctor(s) about drug

therapy while pregnant.

Thanks for your help and welcome.

Clair

> Hi Clair and Welcome.

>

> I'm kind of new around here myself on this list, but I was

diagnosed back in

> 1997. First off, I am so very, very sorry for the loss of your

daughter

> Simone. Your pain is one that I, unfortunately, know only too well.

My first

> son was stillborn at 33 weeks. The most painful experience I ever

went

> through, yet I learned a lot from that experience about parenthood.

>

> Okay, now let's move on towards your next pregnancy. My first

advice to you

> is don't rush into RAI, it isn't a " cure " and means a lifelong

dependency on

> drugs. As you already know and mention, being hypOt has it's own

set of

> problems. Many, many woman have been successfully treated with PTU

during

> their pregnancies and delivered healthy babies. You don't need to

kill off

> your thyroid to have a good pregnancy. Secondary infertility may

have no

> relation to your thyroid at all either. My sister had no trouble

conceiving

> her daughter and spent the next ten years tryig to conceive again.

The

> fertility specialists could find no reason for the trouble.

>

> I understand that need to conceive and deliver a healthy baby after

a loss.

> The emptiness hurts, I know. Part of your problem could be stress

also. You

> are outting a lot of stress on yourself to conceive again, and

you're also a

> nervous wreck about actually being pregnant again I'd be willing to

bet.

>

> And you are correct, our treatment options aren't exactly the best.

> Personally, sticking with ATDs and hoping for remission sounds

better than

> killing my thyroid forever, no turning back forever, with

radiation.I know,

> I don't have any solutions other than try and find a good doctor,

get on

> some PTU.

>

> in MA, USA

> Diagnosed w/Graves, 03/1997

> So far refusing RAI Treatment and Surgery!!!

> Remission from 06/2000 to 07/2002, suspected " hyper " again.

> Currently not taking any meds.

[Guest guest]

Hi and thanks for the welcome. You are right... I am stressed

beyond the limit. First, losing Riley was, as you said, the most

difficult thing I could ever imagine. I still can't make it more

than a week without missing her so much and being so shocked by her

absence that I crumble in tears.

And then, there is infertility to top that off. With no reason for

it, it's hard to not stress. The ups and downs are killer. Hopeful

one moment and in utter despair the next. I was hoping my Graves

would be the culprit. I am not so sure now because of what my RE

said, but I will consult with another doctor on his suggestion. I

want this to be the reason.

I have heard that PTU can be safe during pregnancy. But I never

actually took that. My RE was so dismal about all of this... It was

like, no you can't get pregnant on meds, no this is not the reason

you haven't conceived, no this isn't why you had a miscarriage in

February... Just do RAI and call me in 6 months. Normally he isn't

like that. I think my Graves scared him... or perhaps the fact that

he hadn't caught it. Or maybe the fact that I walk around with

the " Sue Happy Patient " reputation because we successfully sued the

OBGYN who caused my daughter's death for negligence and wrongful

death... I am happy I sued and will not hide it or regret it much to

the dismay of many doctors.

Anyway, RAI... My mom, a nurse, and grandmother lean toward it. I

feel most hesitant about this treatment. But I almost feel like it's

my only option. I am thinking of seeing my old doctor while I wait

for my insurance mess to settle just to see what he recommends. In

fact, I am thinking more and more of just going back to him and

worrying about my infertility doctor later. I trust him. He is a

family friend. And he helped me last time. I am confident he won't

shove the cheapest treatment down my throat all the while relishing

in capturing a new lifelong patient. I know I sound disenchanted

with the medical system and HMOs. And I am. I don't trust them for

a second and already told my husband I would not do any treatment

without consulting my trusted doctor...

I just feel hopeless. There I was at 24 all ready to start my

family... Happily married with my daughter on the way. How the heck

did I get back here... I feel like I will never have another child.

And this stupid thyroid problem is so damn annoying... But somehow

predictable. It's like life waited to throw everything it could at

me for 2 years straight.

And there I go whining again. I will talk to my doctor(s) about drug

therapy while pregnant.

Thanks for your help and welcome.

Clair

> Hi Clair and Welcome.

>

> I'm kind of new around here myself on this list, but I was

diagnosed back in

> 1997. First off, I am so very, very sorry for the loss of your

daughter

> Simone. Your pain is one that I, unfortunately, know only too well.

My first

> son was stillborn at 33 weeks. The most painful experience I ever

went

> through, yet I learned a lot from that experience about parenthood.

>

> Okay, now let's move on towards your next pregnancy. My first

advice to you

> is don't rush into RAI, it isn't a " cure " and means a lifelong

dependency on

> drugs. As you already know and mention, being hypOt has it's own

set of

> problems. Many, many woman have been successfully treated with PTU

during

> their pregnancies and delivered healthy babies. You don't need to

kill off

> your thyroid to have a good pregnancy. Secondary infertility may

have no

> relation to your thyroid at all either. My sister had no trouble

conceiving

> her daughter and spent the next ten years tryig to conceive again.

The

> fertility specialists could find no reason for the trouble.

>

> I understand that need to conceive and deliver a healthy baby after

a loss.

> The emptiness hurts, I know. Part of your problem could be stress

also. You

> are outting a lot of stress on yourself to conceive again, and

you're also a

> nervous wreck about actually being pregnant again I'd be willing to

bet.

>

> And you are correct, our treatment options aren't exactly the best.

> Personally, sticking with ATDs and hoping for remission sounds

better than

> killing my thyroid forever, no turning back forever, with

radiation.I know,

> I don't have any solutions other than try and find a good doctor,

get on

> some PTU.

>

> in MA, USA

> Diagnosed w/Graves, 03/1997

> So far refusing RAI Treatment and Surgery!!!

> Remission from 06/2000 to 07/2002, suspected " hyper " again.

> Currently not taking any meds.

[Guest guest]

Clair Baca wrote:

>

> And the sad thing is that when I was in college I just did whatever

> the doctor said and did no research of my own. So now I feel like I

> am dealing with this for the first time.

I never got a diagnosis at college (alas), but after a few years

on Carbimazole (like Tap), a subtotal thyroidectomy with 6 drug

free years afterwards, I relapsed, and the second time was

harder.

So I can relate to this, I had a great GP, and great endo first

time around, I didn't need to know anything. They have both

retired, I've moved away.... hohum.

> Is a doctor of internal medicine as capable of treating Graves as an

> endocrinologist. My old PCP is an int. med. doctor, not an endo.

A doctors capabilities don't come with bits of paper. If he

knows his thyroids he'll do.

> Can an internal med doctor perform surgery for Graves?

Not sure what an " internal med doctor " equates to exactly, but I

think major surgeries are still done by surgeons over there.

Here thyroid surgery is either part of " general surgery " , or a

specialist thyroid or throat surgeon will perform a

thyroidectomy.

" General Surgery " shouldn't be taken to mean that the surgeon is

specifically trained for thyroid operations, it is just the

department that pays him.

Typically you consult with the surgeon before he will accept you

for surgery, sometimes they will recommend against surgery, but

that is usually in the infirm, or those with unusual

complications.

[Guest guest]

Thanks for the info Simon. Internal medicine... he deals with the

inner workings of the body including the endocrine, among others. He

worked last time and was very pro-active about finding a treatment

for me. And it worked.

I'll need to do some more digging into PTU and surgery as I think

these options sound best to me. I don't know what it is about RAI

that scares me, but it just does. More than being cut open and

having someone poke around at me.

So, Simon, are you from the UK? My father and his wife and my young

sister (7) and brother (3) are over there. My step-mom was hyper and

had her thyroid removed quite a few years ago...

Anyway, thanks again.

Clair

[Guest guest]

Thanks for the info Simon. Internal medicine... he deals with the

inner workings of the body including the endocrine, among others. He

worked last time and was very pro-active about finding a treatment

for me. And it worked.

I'll need to do some more digging into PTU and surgery as I think

these options sound best to me. I don't know what it is about RAI

that scares me, but it just does. More than being cut open and

having someone poke around at me.

So, Simon, are you from the UK? My father and his wife and my young

sister (7) and brother (3) are over there. My step-mom was hyper and

had her thyroid removed quite a few years ago...

Anyway, thanks again.

Clair

[Guest guest]

Clair -

I'm so sorry for the loss of your daughter and all that you have been going

through!

There are a lot of successful preganacy stories here from women on PTU, so

that might be a good thing to try since you already know your levels can be

controlled by ATD's. I don't blame you for having hesitations about RAI.

Aside from the whole radiation issue (and it's not just the thyroid tissue

that absorbs the radiation - all the organs get some to a certain extent,

including ovaries) I think the guideline is not to get pregnant for at least

6 months, but some docs have said more like a year, especially to get your

levels stable on replacement hormone. RAI kills the thyroid slowly, so some

people have trouble readjusting the replacement hormone dosage because of

the changes in levels. ANd when you're hypothyroid, that has an increased

risk of inferitlity and miscarriage associated with it. So you definitely

want to take all that into consideration. It's not as easy as the doctors

like to make it sound. I'd be especially cautious because of your history.

Surgery is another option. Done by a skilled surgeon who regularly performs

thyroidectomies, the risks are very low for problems. If you look in the

archives for Caoline's posts (she posts under " " ) she had

thyroidectomy so she could get pregnant sooner and just delivered her second

child (and she's such a cute little girl, too!)

Don't beat yourself up. The mood swings and sadness are part of the Graves',

too. You can also look in the archives for U.'s posts. She had RAI in

her 20's and has battled infertility for years afterward. She's now pregnant

with twins after a couple IVF's. I hope you get your insurance company

straightened out so you can just get on with getting better. Most important

thing is to take care of yourself first, that will improve your chances of

conceiving!

Don't lose hope yet!

Re: New Here (v. long msg)

> Hi and thanks for the welcome. You are right... I am stressed

> beyond the limit. First, losing Riley was, as you said, the most

> difficult thing I could ever imagine. I still can't make it more

> than a week without missing her so much and being so shocked by her

> absence that I crumble in tears.

>

> And then, there is infertility to top that off. With no reason for

> it, it's hard to not stress. The ups and downs are killer. Hopeful

> one moment and in utter despair the next. I was hoping my Graves

> would be the culprit. I am not so sure now because of what my RE

> said, but I will consult with another doctor on his suggestion. I

> want this to be the reason.

>

> I have heard that PTU can be safe during pregnancy. But I never

> actually took that. My RE was so dismal about all of this... It was

> like, no you can't get pregnant on meds, no this is not the reason

> you haven't conceived, no this isn't why you had a miscarriage in

> February... Just do RAI and call me in 6 months. Normally he isn't

> like that. I think my Graves scared him... or perhaps the fact that

> he hadn't caught it. Or maybe the fact that I walk around with

> the " Sue Happy Patient " reputation because we successfully sued the

> OBGYN who caused my daughter's death for negligence and wrongful

> death... I am happy I sued and will not hide it or regret it much to

> the dismay of many doctors.

>

> Anyway, RAI... My mom, a nurse, and grandmother lean toward it. I

> feel most hesitant about this treatment. But I almost feel like it's

> my only option. I am thinking of seeing my old doctor while I wait

> for my insurance mess to settle just to see what he recommends. In

> fact, I am thinking more and more of just going back to him and

> worrying about my infertility doctor later. I trust him. He is a

> family friend. And he helped me last time. I am confident he won't

> shove the cheapest treatment down my throat all the while relishing

> in capturing a new lifelong patient. I know I sound disenchanted

> with the medical system and HMOs. And I am. I don't trust them for

> a second and already told my husband I would not do any treatment

> without consulting my trusted doctor...

>

> I just feel hopeless. There I was at 24 all ready to start my

> family... Happily married with my daughter on the way. How the heck

> did I get back here... I feel like I will never have another child.

> And this stupid thyroid problem is so damn annoying... But somehow

> predictable. It's like life waited to throw everything it could at

> me for 2 years straight.

>

> And there I go whining again. I will talk to my doctor(s) about drug

> therapy while pregnant.

>

> Thanks for your help and welcome.

>

> Clair

>

>

> > Hi Clair and Welcome.

> >

> > I'm kind of new around here myself on this list, but I was

> diagnosed back in

> > 1997. First off, I am so very, very sorry for the loss of your

> daughter

> > Simone. Your pain is one that I, unfortunately, know only too well.

> My first

> > son was stillborn at 33 weeks. The most painful experience I ever

> went

> > through, yet I learned a lot from that experience about parenthood.

> >

> > Okay, now let's move on towards your next pregnancy. My first

> advice to you

> > is don't rush into RAI, it isn't a " cure " and means a lifelong

> dependency on

> > drugs. As you already know and mention, being hypOt has it's own

> set of

> > problems. Many, many woman have been successfully treated with PTU

> during

> > their pregnancies and delivered healthy babies. You don't need to

> kill off

> > your thyroid to have a good pregnancy. Secondary infertility may

> have no

> > relation to your thyroid at all either. My sister had no trouble

> conceiving

> > her daughter and spent the next ten years tryig to conceive again.

> The

> > fertility specialists could find no reason for the trouble.

> >

> > I understand that need to conceive and deliver a healthy baby after

> a loss.

> > The emptiness hurts, I know. Part of your problem could be stress

> also. You

> > are outting a lot of stress on yourself to conceive again, and

> you're also a

> > nervous wreck about actually being pregnant again I'd be willing to

> bet.

> >

> > And you are correct, our treatment options aren't exactly the best.

> > Personally, sticking with ATDs and hoping for remission sounds

> better than

> > killing my thyroid forever, no turning back forever, with

> radiation.I know,

> > I don't have any solutions other than try and find a good doctor,

> get on

> > some PTU.

> >

> > in MA, USA

> > Diagnosed w/Graves, 03/1997

> > So far refusing RAI Treatment and Surgery!!!

> > Remission from 06/2000 to 07/2002, suspected " hyper " again.

> > Currently not taking any meds.

>

>

>

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

> 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]

Clair -

I'm so sorry for the loss of your daughter and all that you have been going

through!

There are a lot of successful preganacy stories here from women on PTU, so

that might be a good thing to try since you already know your levels can be

controlled by ATD's. I don't blame you for having hesitations about RAI.

Aside from the whole radiation issue (and it's not just the thyroid tissue

that absorbs the radiation - all the organs get some to a certain extent,

including ovaries) I think the guideline is not to get pregnant for at least

6 months, but some docs have said more like a year, especially to get your

levels stable on replacement hormone. RAI kills the thyroid slowly, so some

people have trouble readjusting the replacement hormone dosage because of

the changes in levels. ANd when you're hypothyroid, that has an increased

risk of inferitlity and miscarriage associated with it. So you definitely

want to take all that into consideration. It's not as easy as the doctors

like to make it sound. I'd be especially cautious because of your history.

Surgery is another option. Done by a skilled surgeon who regularly performs

thyroidectomies, the risks are very low for problems. If you look in the

archives for Caoline's posts (she posts under " " ) she had

thyroidectomy so she could get pregnant sooner and just delivered her second

child (and she's such a cute little girl, too!)

Don't beat yourself up. The mood swings and sadness are part of the Graves',

too. You can also look in the archives for U.'s posts. She had RAI in

her 20's and has battled infertility for years afterward. She's now pregnant

with twins after a couple IVF's. I hope you get your insurance company

straightened out so you can just get on with getting better. Most important

thing is to take care of yourself first, that will improve your chances of

conceiving!

Don't lose hope yet!

Re: New Here (v. long msg)

> Hi and thanks for the welcome. You are right... I am stressed

> beyond the limit. First, losing Riley was, as you said, the most

> difficult thing I could ever imagine. I still can't make it more

> than a week without missing her so much and being so shocked by her

> absence that I crumble in tears.

>

> And then, there is infertility to top that off. With no reason for

> it, it's hard to not stress. The ups and downs are killer. Hopeful

> one moment and in utter despair the next. I was hoping my Graves

> would be the culprit. I am not so sure now because of what my RE

> said, but I will consult with another doctor on his suggestion. I

> want this to be the reason.

>

> I have heard that PTU can be safe during pregnancy. But I never

> actually took that. My RE was so dismal about all of this... It was

> like, no you can't get pregnant on meds, no this is not the reason

> you haven't conceived, no this isn't why you had a miscarriage in

> February... Just do RAI and call me in 6 months. Normally he isn't

> like that. I think my Graves scared him... or perhaps the fact that

> he hadn't caught it. Or maybe the fact that I walk around with

> the " Sue Happy Patient " reputation because we successfully sued the

> OBGYN who caused my daughter's death for negligence and wrongful

> death... I am happy I sued and will not hide it or regret it much to

> the dismay of many doctors.

>

> Anyway, RAI... My mom, a nurse, and grandmother lean toward it. I

> feel most hesitant about this treatment. But I almost feel like it's

> my only option. I am thinking of seeing my old doctor while I wait

> for my insurance mess to settle just to see what he recommends. In

> fact, I am thinking more and more of just going back to him and

> worrying about my infertility doctor later. I trust him. He is a

> family friend. And he helped me last time. I am confident he won't

> shove the cheapest treatment down my throat all the while relishing

> in capturing a new lifelong patient. I know I sound disenchanted

> with the medical system and HMOs. And I am. I don't trust them for

> a second and already told my husband I would not do any treatment

> without consulting my trusted doctor...

>

> I just feel hopeless. There I was at 24 all ready to start my

> family... Happily married with my daughter on the way. How the heck

> did I get back here... I feel like I will never have another child.

> And this stupid thyroid problem is so damn annoying... But somehow

> predictable. It's like life waited to throw everything it could at

> me for 2 years straight.

>

> And there I go whining again. I will talk to my doctor(s) about drug

> therapy while pregnant.

>

> Thanks for your help and welcome.

>

> Clair

>

>

> > Hi Clair and Welcome.

> >

> > I'm kind of new around here myself on this list, but I was

> diagnosed back in

> > 1997. First off, I am so very, very sorry for the loss of your

> daughter

> > Simone. Your pain is one that I, unfortunately, know only too well.

> My first

> > son was stillborn at 33 weeks. The most painful experience I ever

> went

> > through, yet I learned a lot from that experience about parenthood.

> >

> > Okay, now let's move on towards your next pregnancy. My first

> advice to you

> > is don't rush into RAI, it isn't a " cure " and means a lifelong

> dependency on

> > drugs. As you already know and mention, being hypOt has it's own

> set of

> > problems. Many, many woman have been successfully treated with PTU

> during

> > their pregnancies and delivered healthy babies. You don't need to

> kill off

> > your thyroid to have a good pregnancy. Secondary infertility may

> have no

> > relation to your thyroid at all either. My sister had no trouble

> conceiving

> > her daughter and spent the next ten years tryig to conceive again.

> The

> > fertility specialists could find no reason for the trouble.

> >

> > I understand that need to conceive and deliver a healthy baby after

> a loss.

> > The emptiness hurts, I know. Part of your problem could be stress

> also. You

> > are outting a lot of stress on yourself to conceive again, and

> you're also a

> > nervous wreck about actually being pregnant again I'd be willing to

> bet.

> >

> > And you are correct, our treatment options aren't exactly the best.

> > Personally, sticking with ATDs and hoping for remission sounds

> better than

> > killing my thyroid forever, no turning back forever, with

> radiation.I know,

> > I don't have any solutions other than try and find a good doctor,

> get on

> > some PTU.

> >

> > in MA, USA

> > Diagnosed w/Graves, 03/1997

> > So far refusing RAI Treatment and Surgery!!!

> > Remission from 06/2000 to 07/2002, suspected " hyper " again.

> > Currently not taking any meds.

>

>

>

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

> 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 the information, Elaine, though my head is still spinning

with it. First of all, I do not have what is considered a history of

miscarriage since it was only one. I was miscarrying before I even

knew I was pregnant. My daughter was stillborn and the cause of her

death has been attributed to a prolonged stay in the womb. I went

nearly 3 weeks over my accurate due date without monitoring.

Amniotic fluid levels dropped significantly and a long stay in the

birth canal actually cut of Riley's oxygen supply.

I'm not sure exactly what tests my old doctor did. But he did test

me often while on the meds and for the first months after I stopped

the meds. Everything was always normal. I actually have a feeling

this either has something to do with the changes in my body after my

pregnancy or just plain old stress. It has been nearly 2 years

(12/14/00) since my daughter was born.

I find it interesting that you say that in Europe most women of child

bearing age are not given RAI. Here it seems to be the suggestion of

choice for anyone. My step-mother had her thyroid removed surgically

(she is, coincidentally, in Europe). But when she was hypo it took

her more years than I can count and 7+ miscarriages to conceive my 7

year old sister. Once she was born my 3 year old brother was

conceived without problem. I see that hypo has more instances of IF.

I believe my doctor will put me on meds. In fact I am on the phone

with my insurance company telling them I want to go back to him and I

want written verification that a fertility specialist will be

assigned even if none is contracted through my medical group... I

swear this is such a headache.

Thanks for the info.

Clair

> Hi Clair,

> Welcome to the group.

> It's entirely possible that you weren't actually in remission after

being on

> block and replace meds (the ATD and the thyroid hormone protocol).

>

> Unless your doctor was measuring your TSI levels and they'd fallen

to <2, it

> would be hard to tell. And many doctors just assume that after a

certain

> time, patients are in remission. But often the patients have

responded to the

> meds but aren't in remission. By this I mean they're still

producing TSI.

> These are the antibodies that cause hyperthyroidism in Graves'

disease. I

> mention this in case one of your doctors gets the idea that the

ATDs didn't

> work for you. ATDs most always work if people stay on them until

they're

> truly in remission. And then they have to be tapered off the meds

slowly.

>

> If you were in remission, changes associated with pregnancy can

trigger a

> return of GD or you can develop postpartum thyroiditis, even in

instances

> where pregnancy does not progress to term.

> These symptoms often spontaneously resolve within a year.

>

> It's encouraging that your doctor is saying that your thyroid

hormone levels

> aren't too high. You're probably a good candidate for ATDs, but in

pregnancy

> you want to use PTU, not Tapazole. Tap crosses the placental

barrier readily

> and can move into the fetal circulation, possibly causing

hypothyroidism. PTU

> may cross the barrier but not nearly as readily. PTU is safe in

doses less

> than 200 mg/day, and you would likely need a lower dose if your

symptoms are

> mild. Also, your dose is reduced after about 8 weeks.

>

> Current studies advise waiting 1 year after RAI to conceive, but in

most

> countries in Europe RAI is never used in women of childbearing age.

There

> aren't enough long term studies to assure its safety. Also,

fertility

> problems are much more prevalent in hypothyroidism.

>

> I hope that when you find the right doctor he'll also run tests for

> anticardiolipin antibodies and lupus anticoagulant. These are

antibodies that

> cause clotting abnomalities. This condition is the primary cause of

> miscarriage, and today doctors recommend these tests for anyone

with a

> history of miscarriage. This condition, which is known as

antiphospholipid

> syndrome, frequently occurs in women with autoimmune thyroid

disease and is

> easy to treat once it's diagnosed.

>

> You might want to read the page on pregnancy and childbirth on my

website.

> Take care, Elaine

> Please visit my web site at

http://daisyelaine_co.tripod.com/gravesdisease/

>

>

>

[Guest guest]

Thanks for the information, Elaine, though my head is still spinning

with it. First of all, I do not have what is considered a history of

miscarriage since it was only one. I was miscarrying before I even

knew I was pregnant. My daughter was stillborn and the cause of her

death has been attributed to a prolonged stay in the womb. I went

nearly 3 weeks over my accurate due date without monitoring.

Amniotic fluid levels dropped significantly and a long stay in the

birth canal actually cut of Riley's oxygen supply.

I'm not sure exactly what tests my old doctor did. But he did test

me often while on the meds and for the first months after I stopped

the meds. Everything was always normal. I actually have a feeling

this either has something to do with the changes in my body after my

pregnancy or just plain old stress. It has been nearly 2 years

(12/14/00) since my daughter was born.

I find it interesting that you say that in Europe most women of child

bearing age are not given RAI. Here it seems to be the suggestion of

choice for anyone. My step-mother had her thyroid removed surgically

(she is, coincidentally, in Europe). But when she was hypo it took

her more years than I can count and 7+ miscarriages to conceive my 7

year old sister. Once she was born my 3 year old brother was

conceived without problem. I see that hypo has more instances of IF.

I believe my doctor will put me on meds. In fact I am on the phone

with my insurance company telling them I want to go back to him and I

want written verification that a fertility specialist will be

assigned even if none is contracted through my medical group... I

swear this is such a headache.

Thanks for the info.

Clair

> Hi Clair,

> Welcome to the group.

> It's entirely possible that you weren't actually in remission after

being on

> block and replace meds (the ATD and the thyroid hormone protocol).

>

> Unless your doctor was measuring your TSI levels and they'd fallen

to <2, it

> would be hard to tell. And many doctors just assume that after a

certain

> time, patients are in remission. But often the patients have

responded to the

> meds but aren't in remission. By this I mean they're still

producing TSI.

> These are the antibodies that cause hyperthyroidism in Graves'

disease. I

> mention this in case one of your doctors gets the idea that the

ATDs didn't

> work for you. ATDs most always work if people stay on them until

they're

> truly in remission. And then they have to be tapered off the meds

slowly.

>

> If you were in remission, changes associated with pregnancy can

trigger a

> return of GD or you can develop postpartum thyroiditis, even in

instances

> where pregnancy does not progress to term.

> These symptoms often spontaneously resolve within a year.

>

> It's encouraging that your doctor is saying that your thyroid

hormone levels

> aren't too high. You're probably a good candidate for ATDs, but in

pregnancy

> you want to use PTU, not Tapazole. Tap crosses the placental

barrier readily

> and can move into the fetal circulation, possibly causing

hypothyroidism. PTU

> may cross the barrier but not nearly as readily. PTU is safe in

doses less

> than 200 mg/day, and you would likely need a lower dose if your

symptoms are

> mild. Also, your dose is reduced after about 8 weeks.

>

> Current studies advise waiting 1 year after RAI to conceive, but in

most

> countries in Europe RAI is never used in women of childbearing age.

There

> aren't enough long term studies to assure its safety. Also,

fertility

> problems are much more prevalent in hypothyroidism.

>

> I hope that when you find the right doctor he'll also run tests for

> anticardiolipin antibodies and lupus anticoagulant. These are

antibodies that

> cause clotting abnomalities. This condition is the primary cause of

> miscarriage, and today doctors recommend these tests for anyone

with a

> history of miscarriage. This condition, which is known as

antiphospholipid

> syndrome, frequently occurs in women with autoimmune thyroid

disease and is

> easy to treat once it's diagnosed.

>

> You might want to read the page on pregnancy and childbirth on my

website.

> Take care, Elaine

> Please visit my web site at

http://daisyelaine_co.tripod.com/gravesdisease/

>

>

>

[Guest guest]

Thanks for the information, Elaine, though my head is still spinning

with it. First of all, I do not have what is considered a history of

miscarriage since it was only one. I was miscarrying before I even

knew I was pregnant. My daughter was stillborn and the cause of her

death has been attributed to a prolonged stay in the womb. I went

nearly 3 weeks over my accurate due date without monitoring.

Amniotic fluid levels dropped significantly and a long stay in the

birth canal actually cut of Riley's oxygen supply.

I'm not sure exactly what tests my old doctor did. But he did test

me often while on the meds and for the first months after I stopped

the meds. Everything was always normal. I actually have a feeling

this either has something to do with the changes in my body after my

pregnancy or just plain old stress. It has been nearly 2 years

(12/14/00) since my daughter was born.

I find it interesting that you say that in Europe most women of child

bearing age are not given RAI. Here it seems to be the suggestion of

choice for anyone. My step-mother had her thyroid removed surgically

(she is, coincidentally, in Europe). But when she was hypo it took

her more years than I can count and 7+ miscarriages to conceive my 7

year old sister. Once she was born my 3 year old brother was

conceived without problem. I see that hypo has more instances of IF.

I believe my doctor will put me on meds. In fact I am on the phone

with my insurance company telling them I want to go back to him and I

want written verification that a fertility specialist will be

assigned even if none is contracted through my medical group... I

swear this is such a headache.

Thanks for the info.

Clair

> Hi Clair,

> Welcome to the group.

> It's entirely possible that you weren't actually in remission after

being on

> block and replace meds (the ATD and the thyroid hormone protocol).

>

> Unless your doctor was measuring your TSI levels and they'd fallen

to <2, it

> would be hard to tell. And many doctors just assume that after a

certain

> time, patients are in remission. But often the patients have

responded to the

> meds but aren't in remission. By this I mean they're still

producing TSI.

> These are the antibodies that cause hyperthyroidism in Graves'

disease. I

> mention this in case one of your doctors gets the idea that the

ATDs didn't

> work for you. ATDs most always work if people stay on them until

they're

> truly in remission. And then they have to be tapered off the meds

slowly.

>

> If you were in remission, changes associated with pregnancy can

trigger a

> return of GD or you can develop postpartum thyroiditis, even in

instances

> where pregnancy does not progress to term.

> These symptoms often spontaneously resolve within a year.

>

> It's encouraging that your doctor is saying that your thyroid

hormone levels

> aren't too high. You're probably a good candidate for ATDs, but in

pregnancy

> you want to use PTU, not Tapazole. Tap crosses the placental

barrier readily

> and can move into the fetal circulation, possibly causing

hypothyroidism. PTU

> may cross the barrier but not nearly as readily. PTU is safe in

doses less

> than 200 mg/day, and you would likely need a lower dose if your

symptoms are

> mild. Also, your dose is reduced after about 8 weeks.

>

> Current studies advise waiting 1 year after RAI to conceive, but in

most

> countries in Europe RAI is never used in women of childbearing age.

There

> aren't enough long term studies to assure its safety. Also,

fertility

> problems are much more prevalent in hypothyroidism.

>

> I hope that when you find the right doctor he'll also run tests for

> anticardiolipin antibodies and lupus anticoagulant. These are

antibodies that

> cause clotting abnomalities. This condition is the primary cause of

> miscarriage, and today doctors recommend these tests for anyone

with a

> history of miscarriage. This condition, which is known as

antiphospholipid

> syndrome, frequently occurs in women with autoimmune thyroid

disease and is

> easy to treat once it's diagnosed.

>

> You might want to read the page on pregnancy and childbirth on my

website.

> Take care, Elaine

> Please visit my web site at

http://daisyelaine_co.tripod.com/gravesdisease/

>

>

>