Re: PTU vs. RAI

[Guest guest]

Margaret,

It's a large online community for support through conception and

pregnancy and on to raising children. The focus, though, is on

trying to conceive. There are seperate chat boards set up for

people in different situations. One of them is for people who have

thyroid problems. Most of the girls are hypo, but I do see the

occassional Graves girl. I don't participate on it too much as it's

sort of a slow board, but I check it from time to time and if I see

a Graves person, I say hi and direct them here and tell them to make

sure they look into all their options on their own before letting a

doctor direct the to one without going in depth.

I had a baby at the end of 2000 who I lost. Since then my husband

and I have been trying again to no avail. I did have one

miscarriage in February... Anyway my Graves we undiagnosed at the

time. We saw a specialist and we both came out looking fine,

reproductively. I have normal cycles and ovulate on my own and

everything. We thought it was the stress from losing Riley still

affecting us. And then we found out that I have Graves again

(likely brought on by my pregnancy I'm told). Anyway for now we're

not on birth control, but we're not officially trying as I get

situated on my meds. But I have an appointment on Monday with my

doctor to talk about going back to my fertility specailist and

picking up where we left off.

Hope that helped though it was more than you asked for =)

Merry Christmas!

Clair

> > Hello,

> >

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

RAI

> at the URL

> > below!

> >

> > God bless,

> >

> >

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

"

>

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

> >

> >

> >

[Guest guest]

Clair!

I am glad I found you too! Feel free to share my webpage with anyone that

you think it would help!

Thank you for your well wishes.......right back at ya! Two of my friends

from Bible study who have had fertility issues and IVFs have just become

pregnant...and I am praying for the same thing for you!

God bless,

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

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

[Guest guest]

Clair,

So sorry to hear about all of your troubles conceiving. I hope things work out

soon for you. Are you trying to conceive on PTU? If so, can you tell me exactly

what the risks are? All I hear is that they are small but I need more details so

that I can decide what to do. I just talked to my gynecologist today who I love.

She is very open minded about alternative medicine, nutrition and is up to date

on European medicine. My husband is Dutch and I just talked to her about

medical care in England. Unlike most doctors in the US who think European

medicine in awful, she staunchly defended it. Anyway, today she also told me

that I needed to do RAI. I tried to explain to her that I didn't want to and

that I had heard from allot of people that they never felt good again. Of course

she didn't listen but hinted that I was irresponsible to put my baby at risk.

She also said that there was a small risk of my baby developing hypothyroidism

but she couldn't say how small or if it would be permanent or temporary. Anyway,

if you have heard anything different from your doctor I would love to hear it.

thanks,

Margaret

Re: PTU vs. RAI

Margaret,

It's a large online community for support through conception and

pregnancy and on to raising children. The focus, though, is on

trying to conceive. There are seperate chat boards set up for

people in different situations. One of them is for people who have

thyroid problems. Most of the girls are hypo, but I do see the

occassional Graves girl. I don't participate on it too much as it's

sort of a slow board, but I check it from time to time and if I see

a Graves person, I say hi and direct them here and tell them to make

sure they look into all their options on their own before letting a

doctor direct the to one without going in depth.

I had a baby at the end of 2000 who I lost. Since then my husband

and I have been trying again to no avail. I did have one

miscarriage in February... Anyway my Graves we undiagnosed at the

time. We saw a specialist and we both came out looking fine,

reproductively. I have normal cycles and ovulate on my own and

everything. We thought it was the stress from losing Riley still

affecting us. And then we found out that I have Graves again

(likely brought on by my pregnancy I'm told). Anyway for now we're

not on birth control, but we're not officially trying as I get

situated on my meds. But I have an appointment on Monday with my

doctor to talk about going back to my fertility specailist and

picking up where we left off.

Hope that helped though it was more than you asked for =)

Merry Christmas!

Clair

> > Hello,

> >

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

RAI

> at the URL

> > below!

> >

> > God bless,

> >

> >

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

"

>

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

> >

> >

> >

[Guest guest]

Hi Margaret. I was debating sending this, waiting for someone more

qualified, but decided to anyway and hope it answers more questions than

it raises. It's totally off the cuff so I'm sure I've forgotten something

important. These are the factors that would inform my decision were I in

this situation.

> Anyway, today she also told me that I needed to do RAI.

She may have a European approach but she's not an endo. I'll bet she's

also not a reproductive endo who might be useful (but not necessary) to

consult.

She also

> said that there was a small risk of my baby developing

> hypothyroidism but she couldn't say how small or if it would be

> permanent or temporary.

Is this is a risk post RAI? With proper monitoring you shouldn't worry. I

know many women with hypothyroidism who've had successful pregnancies.

Perhaps it's because their hypoT wasn't RAI induced and so was easier to

manage.

If she's referring to this happening while being on PTU during pregnancy,

a) you'd be on a very low dose, an experienced dr. knows how to

monitor mother and baby to reduce the risk.

The riskiest aspects to babies when their pregnant mothers have thyroid

problems are

- if the mother has active GD - miscarriage. Which is why it's best to

wait till the hyperT is controlled and only a low dose of PTU is needed.

This is also good for the mother's emotional health. Coming on the heels

of (possibly multiple) miscarriages, to do otherwise is too potentially

heartbreaking.

- if the mother is hypothyroid and isn't getting adequate replacement

hormone, perhaps because of a dr. who relies on TSH, and a

too-high-as-normal TSH at that.

- side effects of ATD's on the fetus, which is uncommon. The women

who've been through this will have tips and encouraging words.

- if the mother's GD becomes active during pregnancy thyroidectomy may be

necessary but this too is uncommon because often GD eases up during

pregnancy. (There are, of course, some post-pregnancy considerations,

since it's possible the GD will come back - nursing, contraception, e.g.)

Have a pleasant weekend, Fay

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[Guest guest]

Margaret,

Here is a copy of a past post for you.

-Pam L-

******************

I noticed the question comes up off and on, about new women being diagnosed

with hyper / Graves' , and they want to be starting a family, so choosing a

treatment is even more complicated.

Recently over at About.com, the same question came up again, and Elaine has

posted such a great bunch of replies, I have asked, and been given

permission to share her posts over here for our group. Following are only

here replies to the original poster.

Thank You so much Elaine !

-Pam L-

**********************************

Wanting to do something fast is sort of symtomatic in GD. Most people are

anxious and impatient and want a quick fix. RAI won't necessarily do this

because it causes an elevation of the antibodies that cause Graves' disease.

These antibodies can be passed on to your fetus during pregnancy and cause

neonatal GD. So while the American Society of Nuclear Medicine recently

advised waiting 1 year after RAI to get pregnant, you would still have to be

carefully monitored.

PTU can be safely used in pregnancy. The goal of PTU is to both reduce your

thyroid hormone levels and slow your immune system down so that it keeps

producing the antibodies that cause GD. Not all doctors in the United States

are familiar with its use, but the drug, if kept at the low dose needed for

maintenance, can be used successfully. Then again, since your GD is probably

related to the post-partum period from your first child, you could easily be

in remission before you get pregnant again.

High thyroid hormone levels will cause changes in your menstrual cycle. Once

your levels are brought down into the normal range with the meds, periods

generally resume. People who are nursing also generally notice a reduction

in thyroid hormone levels when they stop.

See my reply to Newly Diagnoses and Scared regarding interpreting what your

thyroid hormone levels mean. And see the page on pregnancy and childbirth on

my web site, http://daisyelaine_co.tripod.com/gravesdisease/ Take care,

Elaine

Elaine , Author

**************

Usually, if you're going to have problems with PTU, it occurs within the

first 4 weeks and it's because of an individual idiosyncratic reaction you

have to the meds. So it's unlikely that you would be on it during pregnancy

and then need to be taken off of it.

Also, during the first trimester of pregnancy, even normal people have a

small spike in their thyroid hormone levels. This isn't usually enough to

make you have your meds raised. However, during the second half of pregnancy

your immune system slows down and estrogens cause your thyroid levels to

fall. So most everyone who is on an anti-thyroid drug needs to have their

dose reduced.

Most sources say that keeping your levels of PTU below 200 mg/daily is safe

but most people can be maintained on 100-150 mg of PTU. I'd make sure I was

taking the lowest dose I needed because hypothyroidism causes more problems

with both fertility and pregnancy than hyperthyroidism does. But you'd have

to make sure you were seeing a doc who had experience using ATDs and who ran

the right lab tests. You'd have to request copies of your labs and stay on

top of things. Of course, if you have RAI and become hypothyroid, you'll

have fluctuating thyroid levels for several years so you'll also have to do

this to guarantee the best outcome.

People have been using PTU safely in pregnancy for over 50 years and there

have been lots of studies done that back its safety. However, I met one

woman on these board who did not have a good outcome using one of the

anti-thyroid drugs during pregnancy. Many women who have had RAI have later

had perfectly normal children.

But there are no long-term studies of these children, where the kids are

followed into adulthood. Recent studies show evidence of cell mutations in

children born to mothers who had RAI. RAI either destroys or mutates cells,

meaning it causes changes in the DNA of the cells. As these cells divide,

you have clones of mutated cells.

Mutated cells can die because they're weak or they can turn into cancer

cells. It often takes 30 years for mutated cells to form cancerous tissue,

but in children, mutations lead to cancer sooner because their cells divide

much more rapidly. This is the reason RAI is not used in women of

child-bearing age in Europe and it's not recommended for children. This is

also why you must avoid children and especially avoid holding them close to

your chest, for several weeks after RAI.

The more we learn about radiation, the more concern there is. The same

radioiodine used in RAI ablation was once used in hospital labs as a tracer

for diagnostic blood tests. More than a decade ago, we quit using it because

of its hazardous potential. After I had RAI ablation, I contaminated the

entire nuclear chemistry department of the hospital where I worked and I was

measurably radioactive for 2 months. This is when I began to question what I

had done.

There are no easy answers here, and I can't tell you what to do. You'll have

to continue to study your options and then decide what will work best for

you in your particular situation. Let me know if you still have questions

though and I'll try to help you sort things out. Whatever you decide, there

are people here who'll support your decision and guide you through any rough

spots. Take care, Elaine

Elaine , Author

****************

In one sense I was lucky in that I wasn't diagnosed with GD until I was

nearly in remission. So my symptoms at the time of diagnosis were very mild.

Where I was unlucky is in my willingness to go through with RAI just because

the doc was a friend of sorts. I should have done my homework first. So if I

could do it over again, I'd first try dietary changes, yoga, an herbal tonic

and perhaps acupuncture. For me, this would likely have been enough. But if

it wasn't I'd try ATDs at a lower dose then what's usually recommended for

at least 18 months. If this didn't work due to side effects or whatever, I'd

have a sub-total thyroidectomy.

Although surgery is low risk, I'd do the ATDs first because I think the

least aggressive treatment is the best. If you respond well to ATDs, you end

up in remission, meaning no symptoms, with your thyroid gland intact.

Hypothyroidism, for me, has been far worse than hyper, and with surgery you

d still have a good chance of becoming hypothyroid.

While PTU is safe in pregnancy, I'd make sure you're on the lowest dose

necessary to keep your thyroid levels in the normal range. 100 mg would be

best although studies show that amounts up to 200-300 mg are safe in

pregnancy. But you need to be on PTU at least 6-8 weeks to get moved to 100

mg if you start on 200-300 mg. Even though being on the 200-300 mg should be

ok, I'd want to be on less during the time of conception.

Of course if your symptoms are mild and you're able to start off on 100-150

mg and then reduce it to 100 mg or less, you wouldn't have to wait to become

pregnant. With surgery, you'd just want to make sure you were recovered from

the surgery and healthy and that your thyroid levels had stabilized. So even

though your levels can still bounce around a bit after surgery, you'd be

under medical care and monitored to make sure you were on the right dose of

replacement hormone to keep you in the normal range. Take care, Elaine

Elaine , Author

[Guest guest]

Margaret, are you pregnant now? If so, I would not do RAI. It can

kill your baby's thyroid and your child would be HYPO for life.

My understanding is that in low doses (200mg or less from what I

remember), PTU is safe during pregnancy. Even still, I would feel

safer on a higher dose of PTU while pregnant than taking RAI. I

personally WON'T ever do RAI. I would chose surgery first. But I

am responding well to meds so I hope it never comes to that.

As for me, I saw my doctor yesterday. My husband and I just found

out we may lose all infertility benefits in a few months (we are

still investigating options). This scared the crap outta me. Other

than Graves, I have no identifiable infertility problems (and even

carried my daughter to term... her death was doctor error). But I am

petrified Graves is not the reason for our 2 year battle to

conceive. So I NEED this coverage. Anyway, I saw my doctor

yesterday and he said considering my circumstances, I can go see my

Reproductive Endocrinologist and pursue IVF. I will be on PTU for it

and through the pregnancy if I conceive (in fact, I will likely stay

on meds through all fiture pregnancies to reduce the risk of a

relapse). My doctor says he would have liked to see my TSH start

rising before sending me, but because of our dire situation, he

thinks I am close enough to " normal " to continue. So now we are

racing the clock and trying to jump all our hurdles to make it in

before March.

Anyway, I'm sure others know more. But PTU was my choice because it

is safe for pg. And thankfully, I started at 150mg so my dose should

only get lower.

Hope that helped some.

Clair

> > > Hello,

> > >

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

after

> RAI

> > at the URL

> > > below!

> > >

> > > God bless,

> > >

> > > >

>

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

> "

> >

>

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

> > >

> > >

> > >

[Guest guest]

No I am not pregnant yet. It is my understanding that the baby can develop

hypo when the mother is on PTU but that it is around 5% I think. I would be

so sad if my baby got hypo because I didn't want to be. Anyway, still

investigating. I am starting to like the surgery idea but I think it will be

hard to find a doctor who will do it.

Good luck with all your fertility challenges. I am sure it will all work

out.

Margaret

> " cas9738@...>

>Reply-To: graves_support

>To: graves_support

>Subject: Re: PTU vs. RAI

>Date: Fri, 27 Dec 2002 17:51:40 -0000

>

>Margaret, are you pregnant now? If so, I would not do RAI. It can

>kill your baby's thyroid and your child would be HYPO for life.

>

>My understanding is that in low doses (200mg or less from what I

>remember), PTU is safe during pregnancy. Even still, I would feel

>safer on a higher dose of PTU while pregnant than taking RAI. I

>personally WON'T ever do RAI. I would chose surgery first. But I

>am responding well to meds so I hope it never comes to that.

>

>As for me, I saw my doctor yesterday. My husband and I just found

>out we may lose all infertility benefits in a few months (we are

>still investigating options). This scared the crap outta me. Other

>than Graves, I have no identifiable infertility problems (and even

>carried my daughter to term... her death was doctor error). But I am

>petrified Graves is not the reason for our 2 year battle to

>conceive. So I NEED this coverage. Anyway, I saw my doctor

>yesterday and he said considering my circumstances, I can go see my

>Reproductive Endocrinologist and pursue IVF. I will be on PTU for it

>and through the pregnancy if I conceive (in fact, I will likely stay

>on meds through all fiture pregnancies to reduce the risk of a

>relapse). My doctor says he would have liked to see my TSH start

>rising before sending me, but because of our dire situation, he

>thinks I am close enough to " normal " to continue. So now we are

>racing the clock and trying to jump all our hurdles to make it in

>before March.

>

>Anyway, I'm sure others know more. But PTU was my choice because it

>is safe for pg. And thankfully, I started at 150mg so my dose should

>only get lower.

>

>Hope that helped some.

>

>Clair

>

>

> > > > Hello,

> > > >

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

>after

> > RAI

> > > at the URL

> > > > below!

> > > >

> > > > God bless,

> > > >

> > > > > >

> >

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

> > "

> > >

> >

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

> > > >

> > > >

> > > >

[Guest guest]

No I am not pregnant yet. It is my understanding that the baby can develop

hypo when the mother is on PTU but that it is around 5% I think. I would be

so sad if my baby got hypo because I didn't want to be. Anyway, still

investigating. I am starting to like the surgery idea but I think it will be

hard to find a doctor who will do it.

Good luck with all your fertility challenges. I am sure it will all work

out.

Margaret

> " cas9738@...>

>Reply-To: graves_support

>To: graves_support

>Subject: Re: PTU vs. RAI

>Date: Fri, 27 Dec 2002 17:51:40 -0000

>

>Margaret, are you pregnant now? If so, I would not do RAI. It can

>kill your baby's thyroid and your child would be HYPO for life.

>

>My understanding is that in low doses (200mg or less from what I

>remember), PTU is safe during pregnancy. Even still, I would feel

>safer on a higher dose of PTU while pregnant than taking RAI. I

>personally WON'T ever do RAI. I would chose surgery first. But I

>am responding well to meds so I hope it never comes to that.

>

>As for me, I saw my doctor yesterday. My husband and I just found

>out we may lose all infertility benefits in a few months (we are

>still investigating options). This scared the crap outta me. Other

>than Graves, I have no identifiable infertility problems (and even

>carried my daughter to term... her death was doctor error). But I am

>petrified Graves is not the reason for our 2 year battle to

>conceive. So I NEED this coverage. Anyway, I saw my doctor

>yesterday and he said considering my circumstances, I can go see my

>Reproductive Endocrinologist and pursue IVF. I will be on PTU for it

>and through the pregnancy if I conceive (in fact, I will likely stay

>on meds through all fiture pregnancies to reduce the risk of a

>relapse). My doctor says he would have liked to see my TSH start

>rising before sending me, but because of our dire situation, he

>thinks I am close enough to " normal " to continue. So now we are

>racing the clock and trying to jump all our hurdles to make it in

>before March.

>

>Anyway, I'm sure others know more. But PTU was my choice because it

>is safe for pg. And thankfully, I started at 150mg so my dose should

>only get lower.

>

>Hope that helped some.

>

>Clair

>

>

> > > > Hello,

> > > >

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

>after

> > RAI

> > > at the URL

> > > > below!

> > > >

> > > > God bless,

> > > >

> > > > > >

> >

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

> > "

> > >

> >

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

> > > >

> > > >

> > > >

[Guest guest]

No I am not pregnant yet. It is my understanding that the baby can develop

hypo when the mother is on PTU but that it is around 5% I think. I would be

so sad if my baby got hypo because I didn't want to be. Anyway, still

investigating. I am starting to like the surgery idea but I think it will be

hard to find a doctor who will do it.

Good luck with all your fertility challenges. I am sure it will all work

out.

Margaret

> " cas9738@...>

>Reply-To: graves_support

>To: graves_support

>Subject: Re: PTU vs. RAI

>Date: Fri, 27 Dec 2002 17:51:40 -0000

>

>Margaret, are you pregnant now? If so, I would not do RAI. It can

>kill your baby's thyroid and your child would be HYPO for life.

>

>My understanding is that in low doses (200mg or less from what I

>remember), PTU is safe during pregnancy. Even still, I would feel

>safer on a higher dose of PTU while pregnant than taking RAI. I

>personally WON'T ever do RAI. I would chose surgery first. But I

>am responding well to meds so I hope it never comes to that.

>

>As for me, I saw my doctor yesterday. My husband and I just found

>out we may lose all infertility benefits in a few months (we are

>still investigating options). This scared the crap outta me. Other

>than Graves, I have no identifiable infertility problems (and even

>carried my daughter to term... her death was doctor error). But I am

>petrified Graves is not the reason for our 2 year battle to

>conceive. So I NEED this coverage. Anyway, I saw my doctor

>yesterday and he said considering my circumstances, I can go see my

>Reproductive Endocrinologist and pursue IVF. I will be on PTU for it

>and through the pregnancy if I conceive (in fact, I will likely stay

>on meds through all fiture pregnancies to reduce the risk of a

>relapse). My doctor says he would have liked to see my TSH start

>rising before sending me, but because of our dire situation, he

>thinks I am close enough to " normal " to continue. So now we are

>racing the clock and trying to jump all our hurdles to make it in

>before March.

>

>Anyway, I'm sure others know more. But PTU was my choice because it

>is safe for pg. And thankfully, I started at 150mg so my dose should

>only get lower.

>

>Hope that helped some.

>

>Clair

>

>

> > > > Hello,

> > > >

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

>after

> > RAI

> > > at the URL

> > > > below!

> > > >

> > > > God bless,

> > > >

> > > > > >

> >

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

> > "

> > >

> >

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

> > > >

> > > >

> > > >

[Guest guest]

Hi Margaret-

Your baby will not develop hypothyroidism during the 1st trimester unless

the doctors keep you hypothyroid on PTU during the 1st part of pregnancy.

The baby will be completely reliant on your thyroid hormone for the 1st 11

weeks or so. After that, there is a risk that he/she could develop

hypothyroidism (the baby's thyroid levels could be normal) if you still need

PTU and are hyper but very often mothers don't even need ATDs at that point.

That hypothyroidism will develop in the baby and not you if you're still

hyper is unlikely if you need the PTU because your thyroid antibodies cross

the placental barrier, making the baby hyperthyroid too (even though he/she

is not the source of autoimmunity) so as long as you're OK, it is likely the

baby will be OK too. They can tell if the baby is doing OK by keeping track

of growth and the placenta. In this case, keeping yourself healthy is just

as important as keeping your baby healthy.

I don't think it's selfish to think of keeping yourself from being

hypothyroid. I can tell you that the quality of life of your children will

suffer greatly if you have the misfortune of being kept hypothyroid after

being permanently treated for Graves'. I cannot do or enjoy what other

mothers that have children my age do. Although I try not to let him see how

exhausted I am all the time, he still picks up on it. Forget my husband.

I'm just lucky that he understands what I'm going through. He's a physician

and understands the mechanics of the whole business. The average spouse

wouldn't be able to. If anything, we're selfish because we chose to have

more children (after years of infertility-had infertility with my son too).

I'll bet that 5% of babies that develop hypothyroidism that you quoted after

their mothers have been kept on PTU was because their mothers were kept

hypothyroid on it. So it is essential at this time to find an endo that is

used to treating pregnant women and that specializes in thyroid disease. An

OB/GYN does not have the background or knowledge to competently treat your

thyroid disease during this time. Any physician that tests only TSH can

easily keep you hypothyroid for some or all of your pregnancy (which is

probably responsible for that 5% #) so you need someone that tests FT3 and

FT4 too. TSH can lag for several months once your thyroid levels are normal

so if you have a doctor that tests only TSH during pregnancy, you can become

progressively more hypothyroid until TSH finally catches up.

Anyhow, I know you like your doctor but a doctor that respects the way

European doctors practice medicine would never suggest that you're

irresponsible if you don't do RAI especially for a mild case of Graves'.

They don't do that to women that are contemplating pregnancy there (Simon

could tell you more here).

I just had to throw my 2 cents in. After what I've gone through after RAI

for almost my entire adult life and what my family has been put through, it

just drives me crazy that they so cavalierly push it for Graves'.

Take care,

dx & RAI 1987 (at age 24)

> No I am not pregnant yet. It is my understanding that the baby can develop

> hypo when the mother is on PTU but that it is around 5% I think. I would

be

> so sad if my baby got hypo because I didn't want to be. Anyway, still

> investigating. I am starting to like the surgery idea but I think it will

be

> hard to find a doctor who will do it.

>

> Good luck with all your fertility challenges. I am sure it will all work

> out.

>

> Margaret

[Guest guest]

E-mail me personally and I will give you my story... We tried to

have a baby for 3 years and on the verge of giving up they realized

I had graves. Lost 3 pregnancies to it... I am happy to say with

the help of a great endo and dr. who had done a study on graves

women and pregnancy I now have a beautifull baby girl! I have since

had RAI and a year later I am close to being normal... I did take

PTU everyday of my pregnancy and she shows no signs of adverse

effect she (Gabby) is now 26 months and running through the terrible

twos... I have actually started adjusting my own meds and I am

doing pretty good... well my husband has not divorced me yet...

Debbie

[Guest guest]

E-mail me personally and I will give you my story... We tried to

have a baby for 3 years and on the verge of giving up they realized

I had graves. Lost 3 pregnancies to it... I am happy to say with

the help of a great endo and dr. who had done a study on graves

women and pregnancy I now have a beautifull baby girl! I have since

had RAI and a year later I am close to being normal... I did take

PTU everyday of my pregnancy and she shows no signs of adverse

effect she (Gabby) is now 26 months and running through the terrible

twos... I have actually started adjusting my own meds and I am

doing pretty good... well my husband has not divorced me yet...

Debbie

[Guest guest]

E-mail me personally and I will give you my story... We tried to

have a baby for 3 years and on the verge of giving up they realized

I had graves. Lost 3 pregnancies to it... I am happy to say with

the help of a great endo and dr. who had done a study on graves

women and pregnancy I now have a beautifull baby girl! I have since

had RAI and a year later I am close to being normal... I did take

PTU everyday of my pregnancy and she shows no signs of adverse

effect she (Gabby) is now 26 months and running through the terrible

twos... I have actually started adjusting my own meds and I am

doing pretty good... well my husband has not divorced me yet...

Debbie

[Guest guest]

Hi Debbie-

The hypothyroidism didn't become a real problem til several years after RAI

after I stopped converting T4 (levothyroxine) to T3 (active thyroid hormone)

efficiently. Most husbands (or wives) do not understand the huge change

this entails and both hyperthyroidism and hypothyroidism are very hard on a

marriage.

I graduated summa cum laude in biology and later graduated with a 4.0 with

my master's (in parasitology which involves immune function) and I couldn't

figure it out. My husband is an academic physician who is very

well-respected in our community and he couldn't figure out what was wrong

with me. Neither could any of my doctors until I came across a very good

endo after 11 years that finally figured it out. They certainly didn't do

it on purpose.

You were very lucky that you found good doctors to take care of you. Not

all of us are so fortunate and, I daresay, most of us will not have that

kind of care at our disposal. I can't think of a patient that had better

resources than I did yet it happened to me. Studies show that a significant

minority of patients do not do well after RAI (30%). Yet we are not told

that when we are told that we must have RAI. If I had known those odds, I

would never have chosen to have RAI.

Anyhow, like you, many people do well after RAI. It isn't a guarantee of

the future but, even at this point, that you are doing well is a good sign.

I know too many that aren't that lucky. It's very difficult to get in to

see a good endo that specializes in thyroid disease. Most endos specialize

in diabetes.

Sorry about getting on my high horse. But when you're one of the ones that

doesn't do well even though 2 out of 3 do, it doesn't help to see how well

people can do. It's like when you suffer from infertility and seeing

everyone around you getting pregnant when you can't. It's not very

comforting that only 10-15% of women suffer from infertility when you are

one of those that can't get pregnant. RAI doesn't even have odds that good.

Take care,

dx & RAI 1987 (at age 24)

I have actually started adjusting my own meds and I am

> doing pretty good... well my husband has not divorced me yet...

[Guest guest]

Hi Debbie-

The hypothyroidism didn't become a real problem til several years after RAI

after I stopped converting T4 (levothyroxine) to T3 (active thyroid hormone)

efficiently. Most husbands (or wives) do not understand the huge change

this entails and both hyperthyroidism and hypothyroidism are very hard on a

marriage.

I graduated summa cum laude in biology and later graduated with a 4.0 with

my master's (in parasitology which involves immune function) and I couldn't

figure it out. My husband is an academic physician who is very

well-respected in our community and he couldn't figure out what was wrong

with me. Neither could any of my doctors until I came across a very good

endo after 11 years that finally figured it out. They certainly didn't do

it on purpose.

You were very lucky that you found good doctors to take care of you. Not

all of us are so fortunate and, I daresay, most of us will not have that

kind of care at our disposal. I can't think of a patient that had better

resources than I did yet it happened to me. Studies show that a significant

minority of patients do not do well after RAI (30%). Yet we are not told

that when we are told that we must have RAI. If I had known those odds, I

would never have chosen to have RAI.

Anyhow, like you, many people do well after RAI. It isn't a guarantee of

the future but, even at this point, that you are doing well is a good sign.

I know too many that aren't that lucky. It's very difficult to get in to

see a good endo that specializes in thyroid disease. Most endos specialize

in diabetes.

Sorry about getting on my high horse. But when you're one of the ones that

doesn't do well even though 2 out of 3 do, it doesn't help to see how well

people can do. It's like when you suffer from infertility and seeing

everyone around you getting pregnant when you can't. It's not very

comforting that only 10-15% of women suffer from infertility when you are

one of those that can't get pregnant. RAI doesn't even have odds that good.

Take care,

dx & RAI 1987 (at age 24)

I have actually started adjusting my own meds and I am

> doing pretty good... well my husband has not divorced me yet...

[Guest guest]

Hi Debbie-

The hypothyroidism didn't become a real problem til several years after RAI

after I stopped converting T4 (levothyroxine) to T3 (active thyroid hormone)

efficiently. Most husbands (or wives) do not understand the huge change

this entails and both hyperthyroidism and hypothyroidism are very hard on a

marriage.

I graduated summa cum laude in biology and later graduated with a 4.0 with

my master's (in parasitology which involves immune function) and I couldn't

figure it out. My husband is an academic physician who is very

well-respected in our community and he couldn't figure out what was wrong

with me. Neither could any of my doctors until I came across a very good

endo after 11 years that finally figured it out. They certainly didn't do

it on purpose.

You were very lucky that you found good doctors to take care of you. Not

all of us are so fortunate and, I daresay, most of us will not have that

kind of care at our disposal. I can't think of a patient that had better

resources than I did yet it happened to me. Studies show that a significant

minority of patients do not do well after RAI (30%). Yet we are not told

that when we are told that we must have RAI. If I had known those odds, I

would never have chosen to have RAI.

Anyhow, like you, many people do well after RAI. It isn't a guarantee of

the future but, even at this point, that you are doing well is a good sign.

I know too many that aren't that lucky. It's very difficult to get in to

see a good endo that specializes in thyroid disease. Most endos specialize

in diabetes.

Sorry about getting on my high horse. But when you're one of the ones that

doesn't do well even though 2 out of 3 do, it doesn't help to see how well

people can do. It's like when you suffer from infertility and seeing

everyone around you getting pregnant when you can't. It's not very

comforting that only 10-15% of women suffer from infertility when you are

one of those that can't get pregnant. RAI doesn't even have odds that good.

Take care,

dx & RAI 1987 (at age 24)

I have actually started adjusting my own meds and I am

> doing pretty good... well my husband has not divorced me yet...

[Guest guest]

Hi Margaret,

While steroids do offer short-term protection against GO occurring after RAI,

many people do not develop GO until years after having RAI. This is because

the antibodies that cause both GD and GO are increased for many years after

having RAI. It's not feasible to remain on steroids long-term. Take care,

Elaine

[Guest guest]

Hi Margaret,

While steroids do offer short-term protection against GO occurring after RAI,

many people do not develop GO until years after having RAI. This is because

the antibodies that cause both GD and GO are increased for many years after

having RAI. It's not feasible to remain on steroids long-term. Take care,

Elaine

[Guest guest]

Hi Margaret,

While steroids do offer short-term protection against GO occurring after RAI,

many people do not develop GO until years after having RAI. This is because

the antibodies that cause both GD and GO are increased for many years after

having RAI. It's not feasible to remain on steroids long-term. Take care,

Elaine

[Guest guest]

,

I read your story and am so tempted to print out the pictures and bring them to

my doctor who is adamant that RAI doesn't make the eyes worse. I know radiation

and steroids don't always work, but I was interested if they tried them on you?

I just read another study that showed that of 135 people who did RAI w/ 3 months

of steroids, none developed or had worsening of GED. I guess the trick is

finding a doctor who will do 3 months of steroids. When I asked my

ophthalmologist, who is the leader in Graves' in Seattle, if I could do steroids

before and after, he said no and to just come in two weeks after. By then, if I

have eye problems I guess it would be too late. Some help. I wish the doctors

would read the studies as actively as we do!

Margaret

Re: Re: PTU vs. RAI

Clair!

I am glad I found you too! Feel free to share my webpage with anyone that

you think it would help!

Thank you for your well wishes.......right back at ya! Two of my friends

from Bible study who have had fertility issues and IVFs have just become

pregnant...and I am praying for the same thing for you!

God bless,

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

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

[Guest guest]

,

I read your story and am so tempted to print out the pictures and bring them to

my doctor who is adamant that RAI doesn't make the eyes worse. I know radiation

and steroids don't always work, but I was interested if they tried them on you?

I just read another study that showed that of 135 people who did RAI w/ 3 months

of steroids, none developed or had worsening of GED. I guess the trick is

finding a doctor who will do 3 months of steroids. When I asked my

ophthalmologist, who is the leader in Graves' in Seattle, if I could do steroids

before and after, he said no and to just come in two weeks after. By then, if I

have eye problems I guess it would be too late. Some help. I wish the doctors

would read the studies as actively as we do!

Margaret

Re: Re: PTU vs. RAI

Clair!

I am glad I found you too! Feel free to share my webpage with anyone that

you think it would help!

Thank you for your well wishes.......right back at ya! Two of my friends

from Bible study who have had fertility issues and IVFs have just become

pregnant...and I am praying for the same thing for you!

God bless,

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

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

[Guest guest]

,

I read your story and am so tempted to print out the pictures and bring them to

my doctor who is adamant that RAI doesn't make the eyes worse. I know radiation

and steroids don't always work, but I was interested if they tried them on you?

I just read another study that showed that of 135 people who did RAI w/ 3 months

of steroids, none developed or had worsening of GED. I guess the trick is

finding a doctor who will do 3 months of steroids. When I asked my

ophthalmologist, who is the leader in Graves' in Seattle, if I could do steroids

before and after, he said no and to just come in two weeks after. By then, if I

have eye problems I guess it would be too late. Some help. I wish the doctors

would read the studies as actively as we do!

Margaret

Re: Re: PTU vs. RAI

Clair!

I am glad I found you too! Feel free to share my webpage with anyone that

you think it would help!

Thank you for your well wishes.......right back at ya! Two of my friends

from Bible study who have had fertility issues and IVFs have just become

pregnant...and I am praying for the same thing for you!

God bless,

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

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

[Guest guest]

In a message dated 12/28/2002 8:24:05 PM Eastern Standard Time,

margaretlmiller@... writes:

> my doctor who is adamant that RAI doesn't make the eyes worse

Margaret,

This statement is simply not true. It can make your eyes worse and any doc

who says it can't isn't worth sticking with. In my opinion, if I had it to

do over again with the knowlege I have now, I wouldn't even chance RAI in

conjunction with steroids to protect the eyes. Granted, I have worst case

scenario, so I have lived the nightmare and of course wouldn't recommend RAI

in any form to my worst enemy. Why would anyone take the CHANCE of looking

the way I do now?

After I found out that I should not have taken RAI, I sought a new endo. So

it was 2 months after my GP started me on Synthroid (2 weeks post RAI) that I

saw the new one. At that point, I was very hypO, TSH 97, and I was a

physical and emotional mess. My ophth wanted to put me on steroids, but

after speaking with my new endo, they decided that the side effects of

steroids would be worse for me than any benefits I would gain.

Your thyroid is not sick, your autoimmune system is. Meds address the

autoimmune nature of Graves as they will lower the antibodies that are

attacking the thyroid and eye tissues. When you take RAI, thyroid tissue is

killed, not antibodies. So after RAI, the ABs need to find a new

victim...the eyes. So RAI can and does make the eye disease worse...not for

everyone. But let me tell you, the severe form of this eye disease is a

horrendous thing to have to live with!

I really think you need a new doctor, but that is just my opinion.

God bless,

[Guest guest]

In a message dated 12/28/2002 8:24:05 PM Eastern Standard Time,

margaretlmiller@... writes:

> my doctor who is adamant that RAI doesn't make the eyes worse

Margaret,

This statement is simply not true. It can make your eyes worse and any doc

who says it can't isn't worth sticking with. In my opinion, if I had it to

do over again with the knowlege I have now, I wouldn't even chance RAI in

conjunction with steroids to protect the eyes. Granted, I have worst case

scenario, so I have lived the nightmare and of course wouldn't recommend RAI

in any form to my worst enemy. Why would anyone take the CHANCE of looking

the way I do now?

After I found out that I should not have taken RAI, I sought a new endo. So

it was 2 months after my GP started me on Synthroid (2 weeks post RAI) that I

saw the new one. At that point, I was very hypO, TSH 97, and I was a

physical and emotional mess. My ophth wanted to put me on steroids, but

after speaking with my new endo, they decided that the side effects of

steroids would be worse for me than any benefits I would gain.

Your thyroid is not sick, your autoimmune system is. Meds address the

autoimmune nature of Graves as they will lower the antibodies that are

attacking the thyroid and eye tissues. When you take RAI, thyroid tissue is

killed, not antibodies. So after RAI, the ABs need to find a new

victim...the eyes. So RAI can and does make the eye disease worse...not for

everyone. But let me tell you, the severe form of this eye disease is a

horrendous thing to have to live with!

I really think you need a new doctor, but that is just my opinion.

God bless,