has anyone gotten pregnant POST-RAI?

[Guest guest]

I know everyone's seen my 'ANTI-RAI' posts in the past week. Joey,

my wife, asked if anyone has gotten pregnant and had a successful

pregnancy post-RAI. I understand that there may not be many people

on this site who've had RAI, but if you have, have you had kids?

Please feel free to comment on outcomes, opinions, results,

aches/pains, etc. Thank you again for your time.

Corey ( & Joey)

[Guest guest]

Corey -

I have not had RAI, but am currently pregnant, on PTU and doing

well. I do know that one thing I am wary of is going hypo during

pregnancy. I have been having my labs taken between every 2 and 4

weeks to make sure that this does not happen. I cannot remember

where I read it, but I read that if the mother is hypo during

pregnancy the child could have the possibility of having some

learning disorders. This is a concern of mine and I would be even

more worried if I had had RAI and were fighting hypo constantly. I

was wondering if you have your wife's lab results to post for

everyone to comment on. I do know that some docs will mis-medicate

to purposely lead patients to think that RAI is their only option. I

have found that most of the members have much more insight than the

doctors I have been working with when it comes to med adjustment and

have really come to count on their input as much as that of my docs

(and there are quite a few while pregnant!!)

I know this isn't the information you were looking for, but maybe it

will help a bit anyway.

Lori

> I know everyone's seen my 'ANTI-RAI' posts in the past week. Joey,

> my wife, asked if anyone has gotten pregnant and had a successful

> pregnancy post-RAI. I understand that there may not be many people

> on this site who've had RAI, but if you have, have you had kids?

> Please feel free to comment on outcomes, opinions, results,

> aches/pains, etc. Thank you again for your time.

>

> Corey ( & Joey)

[Guest guest]

Corey,

you might want to check this out.

http://www.cfps.org.sg/programmes/fmmc/modules/module8/module8B/module

8B3/2002_M8B3R2.pdf

Please read on the treatment with Tapazole(Methimazole) and PTU and

the one about Thyroid ablation.

It is very revealing, from a medical exerpt.

IUntil you pointed out that this site is anti-RAI, I didn't realize

why tehre were not noo many comments to my e-mails.

Anyway, I underwent 2 RAIs one in November2002, and one in April

2003. My thyroid storm was ongoing for too long for me ,to be able to

function as a single mother. I have some knowledge in nuclear

engineering and nuclear physics, as well as toxicology.

After the Big debate about RAI, I read all the replies in a very

detached manner and noticed that the people who are on either PTU or

Methimazole, are up and down.The health problems come and go. With

such an unknown as GD, how do you think one can be pregnant

healthyly, while the hormones in your body are so changing? In this

article I e-mailed you the link it is stated that there is a 60-70%

chance of reoccurence of Graves after one is on Methimazole or PTU

for 18mos.

I urge you to go to the public library and look for statistic of

cancer (thyroid cancer) and you will find out that actually there is

no correlation between the incidence of thyroid cancer without RAI

and the one with RAI.

My OBGYN told me I can became pregnant any time after the 6 mos from

RAI have passed.

My Endo is specialized in Reproductive medicine and told me I can

have a baby any time without any problems.

What is important to note is that before I underwent RAI( I was a

fervent antiRAI patient back then!), The endo gave me an order to

keep with me at all times in case I develop a sore throat or fever, I

had to go immediately to ER and have my White blood cells count.

Agranoulocytosis(forgive my misspelling) is lethal. Please read more

on this disease as it is irreversible and sudden.Please add to this

irreversible liver failure(0.5% chance to get it from Methimazole or

PTU at any time).

Do you know the probablility of getting Graves Disease? It is 0.01%).

That means that 1 in 10,000 gets Graves Disease,

and ...50 in 10,000 chances one will die once one is on Methimazole.

I guess my analitical engineering mind, or better said, my survival

instinct told me to go with the RAI in this case because I was the 1

in 10,000 who got Graves Disease to begin with!

By the way, I did have to go once while on Methimazole to ER because

I turned yellow all of a sudden! That was before the RAI.

So, the question I asked myself was why the UNited States, which has

an " avant guarde " tecnhology in the medical field ,is treating 90 %

of the Graves Disease patients with RAI?

By the way the levels considered cancerous are at least 500 times

higher than the ones administered during the ablation. I have 3

friend who had RAI 34 years ago, 20 years ago and 10 years ago. None

of them has gained weight, none of them has been diagnosed with

cancer. Maybe it is luck or maybe not. 15 mili-Curries is all you

take during the ablation.

My behavior has changed drastically. My daughter can now talk to me

without her feeling in any danger of rage outbursts. Yes, I feel

tired, as my TSH is still too high for now, but slowly and surely

getting to normal levels. But I felt over tired while on methimazole

and while dragging the thyroid storm on my feet. My eyes are improving

(TED) as well.

I thought my story might be helpful to you. God only knows I have

tried for almost 8 mos without the RAI.

Maybe it will be worhwhile to you and your wife to get 2 -3 endo's

opinions, as well as other support groups' opinions.

I have a friend in Germany same age with me, an MD, who had RAI half

a year before me.

There will be always pros and cons. In everything in life. Everything

is related.

I asked myself other questions. Luckily, my heart was still healty.

But I had side effects from the Propanolol(beta-blocker0) which I had

to take at all time because of my fast heart beats and tachycardia.

After the RAI my heart functions properly. Thank God for that.

Or the fact that this is a recent support group anti-RAI. For how

long these peple struggled with GD ? What is the REAL success rate

without the RAI?

May God guide you in your decisions.

Mirela

-- In graves_support , " Corey " <cfink@s...> wrote:

> I know everyone's seen my 'ANTI-RAI' posts in the past week. Joey,

> my wife, asked if anyone has gotten pregnant and had a successful

> pregnancy post-RAI. I understand that there may not be many people

> on this site who've had RAI, but if you have, have you had kids?

> Please feel free to comment on outcomes, opinions, results,

> aches/pains, etc. Thank you again for your time.

>

> Corey ( & Joey)

[Guest guest]

Hi all

This was a scary email. Really scary!

Liz

=============================

on

liz.jameson@...

Re: has anyone gotten pregnant POST-RAI?

Corey,

you might want to check this out.

http://www.cfps.org.sg/programmes/fmmc/modules/module8/module8B/module

8B3/2002_M8B3R2.pdf

Please read on the treatment with Tapazole(Methimazole) and PTU and

the one about Thyroid ablation.

It is very revealing, from a medical exerpt.

IUntil you pointed out that this site is anti-RAI, I didn't realize

why tehre were not noo many comments to my e-mails.

Anyway, I underwent 2 RAIs one in November2002, and one in April

2003. My thyroid storm was ongoing for too long for me ,to be able to

function as a single mother. I have some knowledge in nuclear

engineering and nuclear physics, as well as toxicology.

After the Big debate about RAI, I read all the replies in a very

detached manner and noticed that the people who are on either PTU or

Methimazole, are up and down.The health problems come and go. With

such an unknown as GD, how do you think one can be pregnant

healthyly, while the hormones in your body are so changing? In this

article I e-mailed you the link it is stated that there is a 60-70%

chance of reoccurence of Graves after one is on Methimazole or PTU

for 18mos.

I urge you to go to the public library and look for statistic of

cancer (thyroid cancer) and you will find out that actually there is

no correlation between the incidence of thyroid cancer without RAI

and the one with RAI.

My OBGYN told me I can became pregnant any time after the 6 mos from

RAI have passed.

My Endo is specialized in Reproductive medicine and told me I can

have a baby any time without any problems.

What is important to note is that before I underwent RAI( I was a

fervent antiRAI patient back then!), The endo gave me an order to

keep with me at all times in case I develop a sore throat or fever, I

had to go immediately to ER and have my White blood cells count.

Agranoulocytosis(forgive my misspelling) is lethal. Please read more

on this disease as it is irreversible and sudden.Please add to this

irreversible liver failure(0.5% chance to get it from Methimazole or

PTU at any time).

Do you know the probablility of getting Graves Disease? It is 0.01%).

That means that 1 in 10,000 gets Graves Disease,

and ...50 in 10,000 chances one will die once one is on Methimazole.

I guess my analitical engineering mind, or better said, my survival

instinct told me to go with the RAI in this case because I was the 1

in 10,000 who got Graves Disease to begin with!

By the way, I did have to go once while on Methimazole to ER because

I turned yellow all of a sudden! That was before the RAI.

So, the question I asked myself was why the UNited States, which has

an " avant guarde " tecnhology in the medical field ,is treating 90 %

of the Graves Disease patients with RAI?

By the way the levels considered cancerous are at least 500 times

higher than the ones administered during the ablation. I have 3

friend who had RAI 34 years ago, 20 years ago and 10 years ago. None

of them has gained weight, none of them has been diagnosed with

cancer. Maybe it is luck or maybe not. 15 mili-Curries is all you

take during the ablation.

My behavior has changed drastically. My daughter can now talk to me

without her feeling in any danger of rage outbursts. Yes, I feel

tired, as my TSH is still too high for now, but slowly and surely

getting to normal levels. But I felt over tired while on methimazole

and while dragging the thyroid storm on my feet. My eyes are improving

(TED) as well.

I thought my story might be helpful to you. God only knows I have

tried for almost 8 mos without the RAI.

Maybe it will be worhwhile to you and your wife to get 2 -3 endo's

opinions, as well as other support groups' opinions.

I have a friend in Germany same age with me, an MD, who had RAI half

a year before me.

There will be always pros and cons. In everything in life. Everything

is related.

I asked myself other questions. Luckily, my heart was still healty.

But I had side effects from the Propanolol(beta-blocker0) which I had

to take at all time because of my fast heart beats and tachycardia.

After the RAI my heart functions properly. Thank God for that.

Or the fact that this is a recent support group anti-RAI. For how

long these peple struggled with GD ? What is the REAL success rate

without the RAI?

May God guide you in your decisions.

Mirela

-- In graves_support , " Corey " <cfink@s...> wrote:

> I know everyone's seen my 'ANTI-RAI' posts in the past week. Joey,

> my wife, asked if anyone has gotten pregnant and had a successful

> pregnancy post-RAI. I understand that there may not be many people

> on this site who've had RAI, but if you have, have you had kids?

> Please feel free to comment on outcomes, opinions, results,

> aches/pains, etc. Thank you again for your time.

>

> Corey ( & Joey)

[Guest guest]

Hi Corey,

RAI causes cell mutations that are passed on to offspring. There are no

long-term studies of children born to mothers who had RAI and for RAI itself

there

are only mortality studies. Since mutations can take as long as 30 years to

show effects, long-term studies are hard to conduct.

on this board has had children after RAI and you might look into the

archives for her posts. Take care, Elaine

[Guest guest]

Corey -

If you're going to the library or otherwise doing research, this is an

interesting article to check out also:

" Cancer Mortality Following Treatment for Adult Hyperthyroidism " , JAMA (The

Journal of the American Medical Association) July 22, 1998 v280 n4 p347

The article is about 20 pages and goes into a lot of detail about the cancer

rates with all forms of treatment for both Graves' and toxic nodular goiter

in a cooperative study that spanned almost 20 years with 35,000 patients.

Interestingly enough though, this study indicates that there is an increased

risk of thyroid cancer in persons who have had RAI, especially within the

first 5 years of treatment. The increased risk seems to drop off after the 5

year mark and is more on average with the general population at that point.

An exerpt:

" Mortality from thyroid cancer (SMR, 3.94; 95% CI, 2.52-5.86) was raised,

but mortality from cancers of the uterus and prostate was below expectation.

Among the 8054 patients treated with I131 only, findings were similar. To

ensure that the elevated thyroid cancer mortality was not due to the 4

patients who had thyroid cancer prior to entering the study, we also

analyzed the data excluding them. The SMR was still substantially increased

(SMR, 3.28). "

(The SMR is standardized mortality rate, CI is confidence interval)

Not to say that they weren't other increased cancer risks in other forms of

treatment discussed in this article, but I've heard the " there aren't any

increased risks of cancer with RAI " from doctors before and I always ask if

they have read this study and in each case they have said no they haven't.

So I guess plausible deniability is a useful tactic in the medical field.

Re: has anyone gotten pregnant POST-RAI?

> Corey,

> you might want to check this out.

>

> http://www.cfps.org.sg/programmes/fmmc/modules/module8/module8B/module

> 8B3/2002_M8B3R2.pdf

>

> Please read on the treatment with Tapazole(Methimazole) and PTU and

> the one about Thyroid ablation.

> It is very revealing, from a medical exerpt.

> IUntil you pointed out that this site is anti-RAI, I didn't realize

> why tehre were not noo many comments to my e-mails.

> Anyway, I underwent 2 RAIs one in November2002, and one in April

> 2003. My thyroid storm was ongoing for too long for me ,to be able to

> function as a single mother. I have some knowledge in nuclear

> engineering and nuclear physics, as well as toxicology.

> After the Big debate about RAI, I read all the replies in a very

> detached manner and noticed that the people who are on either PTU or

> Methimazole, are up and down.The health problems come and go. With

> such an unknown as GD, how do you think one can be pregnant

> healthyly, while the hormones in your body are so changing? In this

> article I e-mailed you the link it is stated that there is a 60-70%

> chance of reoccurence of Graves after one is on Methimazole or PTU

> for 18mos.

> I urge you to go to the public library and look for statistic of

> cancer (thyroid cancer) and you will find out that actually there is

> no correlation between the incidence of thyroid cancer without RAI

> and the one with RAI.

> My OBGYN told me I can became pregnant any time after the 6 mos from

> RAI have passed.

> My Endo is specialized in Reproductive medicine and told me I can

> have a baby any time without any problems.

>

> What is important to note is that before I underwent RAI( I was a

> fervent antiRAI patient back then!), The endo gave me an order to

> keep with me at all times in case I develop a sore throat or fever, I

> had to go immediately to ER and have my White blood cells count.

> Agranoulocytosis(forgive my misspelling) is lethal. Please read more

> on this disease as it is irreversible and sudden.Please add to this

> irreversible liver failure(0.5% chance to get it from Methimazole or

> PTU at any time).

> Do you know the probablility of getting Graves Disease? It is 0.01%).

> That means that 1 in 10,000 gets Graves Disease,

> and ...50 in 10,000 chances one will die once one is on Methimazole.

>

> I guess my analitical engineering mind, or better said, my survival

> instinct told me to go with the RAI in this case because I was the 1

> in 10,000 who got Graves Disease to begin with!

>

> By the way, I did have to go once while on Methimazole to ER because

> I turned yellow all of a sudden! That was before the RAI.

> So, the question I asked myself was why the UNited States, which has

> an " avant guarde " tecnhology in the medical field ,is treating 90 %

> of the Graves Disease patients with RAI?

> By the way the levels considered cancerous are at least 500 times

> higher than the ones administered during the ablation. I have 3

> friend who had RAI 34 years ago, 20 years ago and 10 years ago. None

> of them has gained weight, none of them has been diagnosed with

> cancer. Maybe it is luck or maybe not. 15 mili-Curries is all you

> take during the ablation.

> My behavior has changed drastically. My daughter can now talk to me

> without her feeling in any danger of rage outbursts. Yes, I feel

> tired, as my TSH is still too high for now, but slowly and surely

> getting to normal levels. But I felt over tired while on methimazole

> and while dragging the thyroid storm on my feet. My eyes are improving

> (TED) as well.

> I thought my story might be helpful to you. God only knows I have

> tried for almost 8 mos without the RAI.

> Maybe it will be worhwhile to you and your wife to get 2 -3 endo's

> opinions, as well as other support groups' opinions.

>

> I have a friend in Germany same age with me, an MD, who had RAI half

> a year before me.

>

> There will be always pros and cons. In everything in life. Everything

> is related.

> I asked myself other questions. Luckily, my heart was still healty.

> But I had side effects from the Propanolol(beta-blocker0) which I had

> to take at all time because of my fast heart beats and tachycardia.

> After the RAI my heart functions properly. Thank God for that.

> Or the fact that this is a recent support group anti-RAI. For how

> long these peple struggled with GD ? What is the REAL success rate

> without the RAI?

>

> May God guide you in your decisions.

>

> Mirela

>

>

>

> -- In graves_support , " Corey " <cfink@s...> wrote:

> > I know everyone's seen my 'ANTI-RAI' posts in the past week. Joey,

> > my wife, asked if anyone has gotten pregnant and had a successful

> > pregnancy post-RAI. I understand that there may not be many people

> > on this site who've had RAI, but if you have, have you had kids?

> > Please feel free to comment on outcomes, opinions, results,

> > aches/pains, etc. Thank you again for your time.

> >

> > Corey ( & Joey)

>

>

>

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

> 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]

I had RAI, but I was past having children when this disease came upon me.

Jen M

Re: has anyone gotten pregnant POST-RAI?

> Corey -

> I have not had RAI, but am currently pregnant, on PTU and doing

> well. I do know that one thing I am wary of is going hypo during

> pregnancy. I have been having my labs taken between every 2 and 4

> weeks to make sure that this does not happen. I cannot remember

> where I read it, but I read that if the mother is hypo during

> pregnancy the child could have the possibility of having some

> learning disorders. This is a concern of mine and I would be even

> more worried if I had had RAI and were fighting hypo constantly. I

> was wondering if you have your wife's lab results to post for

> everyone to comment on. I do know that some docs will mis-medicate

> to purposely lead patients to think that RAI is their only option. I

> have found that most of the members have much more insight than the

> doctors I have been working with when it comes to med adjustment and

> have really come to count on their input as much as that of my docs

> (and there are quite a few while pregnant!!)

>

> I know this isn't the information you were looking for, but maybe it

> will help a bit anyway.

> Lori

>

>

> > I know everyone's seen my 'ANTI-RAI' posts in the past week. Joey,

> > my wife, asked if anyone has gotten pregnant and had a successful

> > pregnancy post-RAI. I understand that there may not be many people

> > on this site who've had RAI, but if you have, have you had kids?

> > Please feel free to comment on outcomes, opinions, results,

> > aches/pains, etc. Thank you again for your time.

> >

> > Corey ( & Joey)

>

>

>

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

> 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]

I can't seem to access the document referenced. Can someone please summarize?

Thanks,

Shelly M.

* * *

Date: Wed, 27 Aug 2003 21:53:15 -0000

Subject: Re: has anyone gotten pregnant POST-RAI?

Corey,

you might want to check this out.

http://www.cfps.org.sg/programmes/fmmc/modules/module8/module8B/module

8B3/2002_M8B3R2.pdf

Please read on the treatment with Tapazole(Methimazole) and PTU and

the one about Thyroid ablation. It is very revealing, from a medical exerpt.

[sic]

[Guest guest]

Can someone comment on these statements? Agranulocytosis is very serious,

but according to this study, it was not lethal in 95% of those who were

treated with G-CSF:

http://www.hkam.org.hk/publications/hkmj/article_pdfs/hkm9912p394.pdf

This abstract also supports the benefit of G-CSF in speeding recovery of

bone marrow suppression:

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve & db=PubMed & list_uids=7\

509672 & dopt=Abstract

Also, 50 in 10,000 chances one will die once on MMI? Where is this written?

At 05:53 PM 8/27/2003, you wrote:

>Agranoulocytosis(forgive my misspelling) is lethal. Please read more

>on this disease as it is irreversible and sudden.Please add to this

>irreversible liver failure(0.5% chance to get it from Methimazole or

>PTU at any time).

>Do you know the probablility of getting Graves Disease? It is 0.01%).

>That means that 1 in 10,000 gets Graves Disease,

>and ...50 in 10,000 chances one will die once one is on Methimazole.

>

>I guess my analitical engineering mind, or better said, my survival

>instinct told me to go with the RAI in this case because I was the 1

>in 10,000 who got Graves Disease to begin with!

[Guest guest]

I also remember reading that supposedly agranulocytosis usually occurs

within the first few months of being on an ATD. So if you've been on it for

longer, it's likely you aren't going to get it.

Re: Re: has anyone gotten pregnant POST-RAI?

> Can someone comment on these statements? Agranulocytosis is very serious,

> but according to this study, it was not lethal in 95% of those who were

> treated with G-CSF:

> http://www.hkam.org.hk/publications/hkmj/article_pdfs/hkm9912p394.pdf

> This abstract also supports the benefit of G-CSF in speeding recovery of

> bone marrow suppression:

>

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve & db=PubMed & list_ui

ds=7509672 & dopt=Abstract

>

> Also, 50 in 10,000 chances one will die once on MMI? Where is this

written?

>

>

> At 05:53 PM 8/27/2003, you wrote:

> >Agranoulocytosis(forgive my misspelling) is lethal. Please read more

> >on this disease as it is irreversible and sudden.Please add to this

> >irreversible liver failure(0.5% chance to get it from Methimazole or

> >PTU at any time).

> >Do you know the probablility of getting Graves Disease? It is 0.01%).

> >That means that 1 in 10,000 gets Graves Disease,

> >and ...50 in 10,000 chances one will die once one is on Methimazole.

> >

> >I guess my analitical engineering mind, or better said, my survival

> >instinct told me to go with the RAI in this case because I was the 1

> >in 10,000 who got Graves Disease to begin with!

>

>

>

[Guest guest]

You need to go to Acrobat.com and download a free reader, as that's the file

format.

Terry

> From: Meyer1457@...

> Reply-To: graves_support

> Date: Thu, 28 Aug 2003 00:40:55 EDT

> To: graves_support

> Subject: Re: has anyone gotten pregnant POST-RAI?

>

> I can't seem to access the document referenced. Can someone please summarize?

>

> Thanks,

> Shelly M.

>

> * * *

> Date: Wed, 27 Aug 2003 21:53:15 -0000

>

> Subject: Re: has anyone gotten pregnant POST-RAI?

>

> Corey,

> you might want to check this out.

>

> http://www.cfps.org.sg/programmes/fmmc/modules/module8/module8B/module

> 8B3/2002_M8B3R2.pdf

>

> Please read on the treatment with Tapazole(Methimazole) and PTU and

> the one about Thyroid ablation. It is very revealing, from a medical exerpt.

> [sic]

>

>

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

> 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]

If the link is split, then copy/paste the portion that got cut off to the

part of the URL that comes up when you click:

http://www.cfps.org.sg/programmes/fmmc/modules/module8/module8B/module8B3/2002_M\

8B3R2.pdf

At 12:40 AM 8/28/2003, you wrote:

>I can't seem to access the document referenced. Can someone please summarize?

>

>Thanks,

>Shelly M.

[Guest guest]

Yes Liz,

Anyone can put half truths in an e-mail and scare you.

That is why we exist as a group, to help you learn each needed FACT.

Which one of these supposed problems would you like me to help you

understand. I really don't have the time needed to go through each and every

one of them.

You could also go back and read previous e-mail from the same person and get

a feeling for what is going on, any time something like this appears on a

list or bulletin board.

So many patients are new to a group such as this when they join because of a

disease. It puts you at a disadvantage in telling who is who and their

particular motives. In time, it will all become old hat, no matter what

subject the group is about.

I noticed you had your labs normal values listed finally in a recent post,

so I should head back there and take a look huh? :-)

Sorry you and I lost touch, as I was having a real hard time putting to

pieces together to put together a good reply to you a few days ago.

Since I am no longer dealing with Graves', it is so much harder to stay here

as real life is my priority now, but as I am well aware, the others that

get well, do leave. There are only so many hours in each day.

It will always be patients having problems posting on any site, since they

need answers to questions.

Elaine and the boards, forums, lists are the only reason I got well from the

history of my Graves' before I had a computer... so I stay, though debt is

paid by now.

BUT... I have always done some sort of volunteer work my whole life, this

situation concerning Graves' and the sad state of current treatment in this

country still tugs at my heart... so other sorts of volunteer work will have

to be done by others for now. Though I do miss the companionship and

stimulation of doing physical work that benefits my community and the great

people I know and the ones I have not yet met right here.

I do still have many good friends I met this way, and they keep me up to

date, but it is not the same as the hands on approach, and, the get together

afterwards!

-Pam L-

3 1/2 years Graves', TED, and PTU. Remission due to SLOW reduction of PTU

(despite an incompetent endo ! ), improved lifestyle, excellent nutrition,

herbs, and looking at the big picture.

Pills alone only help the symptoms. We must help our bodies to heal.

[Guest guest]

Problems with this article folks !

This part will most likely catch everyone attention:

__________________________________________________

The principal disadvantage of antithyroid drug therapy is the high relapse

rate. When medication is discontinued, 60% to 70% of patients have

reoccurrence of hyperthyroidism within a year. A lower reoccurrence rate has

been reported with a longer course ( 18 versus 6 months ) of therapy.

__________________________________________________

First off... note that NO where in the entire article is there any mention

of thyroid antibodies. No tests were done at all.

They also were relying on T3 uptake tests, which are useless now that we

have better tests available.

I kept thinking this must be a VERY old article. But on reverse scrolling...

I saw many references up to the year 2000.

At this time antibody tests are around 18 years old as far as availability.

1.So it seems that these poor patients were never properly

diagnosed in the first place.

2. Then they were not monitored using the proper thyroid tests to judge the

proper dose of medication.

3. They do not mentioned how the patients thyroid levels were kept during

their treatment.

4. Then... just to top it off... the patients were taken off of the

antithyroid drugs cold turkey at SIX MONTHS ! With no choice... it did not

matter if they were hyper or hypo or willing.

They still got only 60% and 70 % that went hyper again !!!!

Amazing they had that many do well !

We know which tests we must be monitored on.

We know we need the antibody tests to determine the cause of being

hyperthyroid.

We know to NEVER stop meds cold turkey as that alone can shock the body back

into hyper.

We KNOW to NOT stop the drugs until our antibody tests show less than 2%.

These poor people ! They were put through hell to prove some ones point. I

wonder who paid for this horrid experiment ?

I have to go take a long break now. I keep wondering how these patients got

convinced any of this was right. It is so terribly sad.

-Pam L-

3 1/2 years Graves', TED, and PTU. Remission due to SLOW reduction of PTU

(despite an incompetent endo ! ), improved lifestyle, excellent nutrition,

herbs, and looking at the big picture.

Pills alone only help the symptoms. We must help our bodies to heal.

[Guest guest]

Hi Corey-

I had RAI in my 20s and have never been able to get pregnant naturally.

Some of that might be due to autoimmune antibodies but it could also be due

to not being able to have my thyroid levels right. No one else in my family

has problems getting pregnant. We've spent the last 10 years trying to get

pregnanct.

Anyhow, this last pregnancy was terrible. Originally, I was pregnant with

triplets and we chose to reduce to twins. That was after IUI, a

miscarriage, an unsuccessful IVF and a 2nd one which worked. I was old, had

a multiple pregnancy, and had blood pressure problems. There was a great

discrepancy in the babies' sizes and I have no doubt at all that my little

girl wouldn't have survived or would have been seriously compromised if I

would have done nothing (I did not choose which baby the doctor would take).

Or it's very likely that I would have lost all of them.

This whole ordeal has put a tremendous strain on our family (I have an older

son and was able to get pregnant with him using fertility drugs only) both

emotionally and financially. Never would I recommend RAI to any of my

friends or family. My husband wouldn't either and he's a physician who once

thought RAI was the best choice.

Take care,

dx & RAI 1987 (at age 24)

> I know everyone's seen my 'ANTI-RAI' posts in the past week. Joey,

> my wife, asked if anyone has gotten pregnant and had a successful

> pregnancy post-RAI. I understand that there may not be many people

> on this site who've had RAI, but if you have, have you had kids?

> Please feel free to comment on outcomes, opinions, results,

> aches/pains, etc. Thank you again for your time.

>

> Corey ( & Joey)

[Guest guest]

Mirela,

While it is kind of you to post about your success, some of your information

is inaccurate and misleading.

As I mentioned in a previous post, agranulocytosis is no longer considered

irreversible and it certainly does not come on suddenly.

There are no studies showing an increased risk of TED after GD relapse in

people with ATD use. According to the 6 ophthalmologists I consulted for my book

on GO, ATDs have a protective effect on GO, and when TSH receptor antibody

levels are high, ATDs should be continued at low dose to prevent TED.

However, the risk of TED after RAI peaks at about 6 years post RAI so until

you are at least to that point, you're still at considerable risk for TED,

pretibial myxedema and acropachy. The incidence of acropachy and related

elephantiasis is exclusively seen in people who have RAI because of the

tremendous

increases in levels of TSH receptor antibodies.

Most often, this condition develops 2-3 years after RAI. The incidence of

depression is also increased among people who had treatment for GD that resulted

in permanent hyperthyroidism.

I wish you continued success in your post-RAI return to good health and would

be interested in hearing how you fare at the 6 year post-RAI mark. Elaine

[Guest guest]

Hi Corey:

I'm one who tends to read rather than post, unless I'm having a specific

problem. I was dx with Graves in 1996, after my oldest daughter had been born.

Had rai in February 1997, thyroid bottomed out in May of that year and I started

taking synthroid. Spent two years up and down trying to get the dosage of

sythroid right for me. Finally seemed to hit the right dosage and found out I

was pregnant with number 2. We weren't actively trying, but weren't not trying.

In all honesty, the second pregnancy was much more difficult. My synthroid

dosage was constantly changing, so I was always feeling the symptoms of hypo, in

addition to the usual pregnancy complaints. We have decided not to have anymore

children just because of the toll it took on me and my family. My husband and

daughter also suffered because of the constant headaches, fatigue,

sleeplessness, irritability (my husband would probably say this is the biggest

problem--lol). Not to mention the trouble after the pregnancy. Just as I

needed my dosage to keep increasing while I was pregnant, it had to be

continually decreased post-partum. My youngest is three now and I have finally

been on the same dose for a year now. So it definitely had been a roller

coaster ride for us. Is it the same for other women? Couldn't tell you that,

but I can at least share my experience. However, I love my girls and would do

it again if I had to. It's not the easiest thing to deal with, but there's

always something worse.

Hope this helps in any way possible--and just for the record, if I could go back

in time, knowing what I know now (and what my endo knows now) I personally

wouldn't choose rai unless all other avenues had been exhausted. Would I still

end up having it done, who knows? Unfortunately, I'll never be able to find out

if remission would have been possible.

Take care,

Beverly

has anyone gotten pregnant POST-RAI?

I know everyone's seen my 'ANTI-RAI' posts in the past week. Joey,

my wife, asked if anyone has gotten pregnant and had a successful

pregnancy post-RAI. I understand that there may not be many people

on this site who've had RAI, but if you have, have you had kids?

Please feel free to comment on outcomes, opinions, results,

aches/pains, etc. Thank you again for your time.

Corey ( & Joey)

[Guest guest]

Hi again Corey-

I think Joey has to do more research herself. I know she's sick but she'll

probably resent you if you make a decision that affects her adversely. I

know I resented my husband because I trusted him to make the right decision

since I was sick. Plus, he was a doctor.

Take care,

dx & RAI 1987 (at age 24)

> I know everyone's seen my 'ANTI-RAI' posts in the past week. Joey,

> my wife, asked if anyone has gotten pregnant and had a successful

> pregnancy post-RAI. I understand that there may not be many people

> on this site who've had RAI, but if you have, have you had kids?

> Please feel free to comment on outcomes, opinions, results,

> aches/pains, etc. Thank you again for your time.

>

> Corey ( & Joey)