Holly

[Guest guest]

Hi -

The usual reasons that mean nothing to me as I've found good surgeons. 1.

The scar-which I know for a fact is not a problem. Was it Darnell or

someone else (I can't remember for sure) who said that her scar healed

nicely and is almost unnoticeable? My brother-in-law had the surgery twice

with his thyroid cancer and they went in the same place both times, and even

with that, his scar is almost undetectable. 2. Possible damage to the

voice or parathyroid-that's the whole reason I found surgeons who do this

several times a month and use nerve monitoring to prevent damage to the

vocal chords. 3. Possible recurrence of the symptoms because some of the

thyroid is left. This is a real issue, as I've discovered people who have

had this surgery and had symptoms return. One of them was after 20 years,

which I think I could handle. I'd be 57 after 20 years, and not as concerned

about developing cancer in my lifetime if I chose the RAI then. But the

other was in a relatively short time after the surgery. Of course, my

understanding is that some of the thyroid remains after RAI as well. The

thing is to have enough of the thyroid removed so as to lesson the chance of

that happening. I think I saw someone out there who was having 98% removed.

The one who had a recurrence soon after the surgery had 80% removed, I think

it was.

The person who told me about the 15% was one of the moderators, and they

couldn't site a study, but thought they had heard that percentage somewhere,

so it's by no means exact or official. But, out of 4 people I know, 3 don't

seem to have had any trouble, and if I remove the third who had it fairly

recently, then that's still 50%. I'm by no means advocating RAI. But it is

an option, and possibly the best option for some people, and I think it's

unfair for us to completely scare people away from it. I've seen that

happen over and over as new people join our group. There are people out

there who are not good candidates for surgery because of health problems or

allergies to anesthesia. Or they're just plain terrified of surgery. They

might also be unable to tolerate ATDs. Or they might not respond well to

the ATDs and suffer unnecessarily for years when the RAI could have gotten

them back on track again. I do know that some people have the RAI and go

on to live healthy, productive lives. People do make an informed choice to

have it. It isn't always just shoved blindly down our throats. Granted, it

is most of the time, but not always.

I really sick of taking the ATDs, and I have to make myself keep trying with

them. I wonder if I'm making the right choice. I got my labs yesterday,

and I'm now more hyper than I was when I started. This after being severely

hypo in November and December. I've basically wasted 7 months of my life

suffering and worrying, and I wonder how long I should continue doing this.

Carrying on with this disease is causing long-term health problems. I worry

about my heart. I worry that my mind is going to be permanently damaged.

It's affecting my career. It's affecting my relationship with my daughter.

If I die tomorrow, will it have been worth it to have " lost " these last 7

months? We're all so different, and we need to be able to take our

differences and make choices that are best for us individually. It's hard

to do when we hear nothing but horror stories about one of our options.

That's all I'm trying to say.

Take care,

Holly

Holly

>

>Hi,

>I have been wondering how you are doing. Hanging in there one one dose and

>all, waiting

>for labs. When is your next lab due? Seems to me you are just about there ?

>

>-Pam-

>

>

>

>

>

>

[Guest guest]

Holly, you make some very good points. Kudo's to you for looking into all of

the treatment options and making an informed decision that feels right to

you. I wish the the best with the surgery and I'll keep my fingers crossed

for you!

Doris

[Guest guest]

Holly, you make some very good points. Kudo's to you for looking into all of

the treatment options and making an informed decision that feels right to

you. I wish the the best with the surgery and I'll keep my fingers crossed

for you!

Doris

[Guest guest]

Holly, you make some very good points. Kudo's to you for looking into all of

the treatment options and making an informed decision that feels right to

you. I wish the the best with the surgery and I'll keep my fingers crossed

for you!

Doris

[Guest guest]

Hi Patti. I think it would be very nice if the people on the list who had a

positive experience with RAI would speak up. Unfortunately, I don't think

there are many out here. Someone else did speak up some time ago that she

was glad she had RAI, but I think that's the only one that has. I'm glad

things are going well with you. Now that you're out of " hypo hell " , please

keep us posted on how you're doing. You had it in December, right? I'd

like to know how long it takes you to get your replacement hormone right.

My doc insists that in the vast majority of cases it's 3 months. That is

totally contrary to what I hear out here!

Holly

Re: Holly

> very little consideration is given to ATDs or surgery there. Because of

that

> perceived bias, I wonder where _they_ got the 15% figure from. It seems

that

I too, would be interested in knowing where they got that figure. From my

own experience (working in the computer industry), I've found that people

that have a problem with something tend to be a lot more vocal about

something than the people NOT having a problem. ie: No one comes to me and

says " the network is running GREAT today.. thanks! " . I used to get

people constantly coming to me with their complaints about the network.

Overall, the complaintants were maybe 10 people out of 200 -- but they

were the only ones coming. The 190 who didn't have any problems were

mostly silent.

I'll also admit that sharing my good (so far anyway) experience with RAI

was a bit intimidating on this list -- most of the members who post seem

so vehemently opposed to it that I kept sitting here wondering if I should

hit the " send " button or not. It's entirely possible that the 15% number

is correct, and that people with good experiences just aren't on the

support email lists, or are intimidated into keeping quiet. Of course,

it's also possible that the 15% number is utter garbage.

Maybe I'll make this my next " spare time project " -- figure out where they

got that 15% number from.

We've got 282 members here -- am I the ONLY one that had a pretty good

experience w/ RAI? Anyone else care to speak up?

--patti

*~*~*~*~*

Patti Spicer patti@...

" The silence is as important as the noise. What gets left out is

as important as what gets included "

--Sara Lawrence-Lightfoot, author of " I've Known Rivers "

http://www.cyphergirl.com <http://www.cyphergirl.com> - My photography,

cookbooks, thyroid info, and more!

[Guest guest]

Hi Patti. I think it would be very nice if the people on the list who had a

positive experience with RAI would speak up. Unfortunately, I don't think

there are many out here. Someone else did speak up some time ago that she

was glad she had RAI, but I think that's the only one that has. I'm glad

things are going well with you. Now that you're out of " hypo hell " , please

keep us posted on how you're doing. You had it in December, right? I'd

like to know how long it takes you to get your replacement hormone right.

My doc insists that in the vast majority of cases it's 3 months. That is

totally contrary to what I hear out here!

Holly

Re: Holly

> very little consideration is given to ATDs or surgery there. Because of

that

> perceived bias, I wonder where _they_ got the 15% figure from. It seems

that

I too, would be interested in knowing where they got that figure. From my

own experience (working in the computer industry), I've found that people

that have a problem with something tend to be a lot more vocal about

something than the people NOT having a problem. ie: No one comes to me and

says " the network is running GREAT today.. thanks! " . I used to get

people constantly coming to me with their complaints about the network.

Overall, the complaintants were maybe 10 people out of 200 -- but they

were the only ones coming. The 190 who didn't have any problems were

mostly silent.

I'll also admit that sharing my good (so far anyway) experience with RAI

was a bit intimidating on this list -- most of the members who post seem

so vehemently opposed to it that I kept sitting here wondering if I should

hit the " send " button or not. It's entirely possible that the 15% number

is correct, and that people with good experiences just aren't on the

support email lists, or are intimidated into keeping quiet. Of course,

it's also possible that the 15% number is utter garbage.

Maybe I'll make this my next " spare time project " -- figure out where they

got that 15% number from.

We've got 282 members here -- am I the ONLY one that had a pretty good

experience w/ RAI? Anyone else care to speak up?

--patti

*~*~*~*~*

Patti Spicer patti@...

" The silence is as important as the noise. What gets left out is

as important as what gets included "

--Sara Lawrence-Lightfoot, author of " I've Known Rivers "

http://www.cyphergirl.com <http://www.cyphergirl.com> - My photography,

cookbooks, thyroid info, and more!

[Guest guest]

Patti,

Please, don't ever hesitate to share your experience within this list. We

are NOT closed minded, but, as you say, we've all heard from the % of people

who had bad experiences, and not the good. So, opinions are formed based on

what we are presented with. My endo has argued with me for years that RAI

would be my best option--and I've never, ever believed him, based partly on

what I have read here.

Also, my feeling is based, perhaps illogically, on my mother's experience--I

don't know for sure that she was radiated, I do know she had thyroid cancer,

a thyroidectomy 3 years before I was born, and ultimately, died of cancer of

the esophagus 40 years later. But, all my lifetime she suffered from severe

mental and physical problems. What caused all the problems? I'll never know,

I only experienced the effects, as a child growing up. Could it have been

RAI? I don't know. I'll never know. But I'm still deathly afraid of it!

I, for one, hope you stay here for years, and share with us your ongoing

experience post RAI, the ups and the downs, and get all the support in the

process that we can offer, as well as helping us all understand another

aspect of this disease.

Terry

>

> Reply-To: graves_support

> Date: Tue, 5 Mar 2002 10:24:42 -0500 (EST)

> To: graves_support

> Subject: Re: Holly

>

>

> I'll also admit that sharing my good (so far anyway) experience with RAI

> was a bit intimidating on this list -- most of the members who post seem

> so vehemently opposed to it that I kept sitting here wondering if I should

> hit the " send " button or not.

[Guest guest]

Patti,

Please, don't ever hesitate to share your experience within this list. We

are NOT closed minded, but, as you say, we've all heard from the % of people

who had bad experiences, and not the good. So, opinions are formed based on

what we are presented with. My endo has argued with me for years that RAI

would be my best option--and I've never, ever believed him, based partly on

what I have read here.

Also, my feeling is based, perhaps illogically, on my mother's experience--I

don't know for sure that she was radiated, I do know she had thyroid cancer,

a thyroidectomy 3 years before I was born, and ultimately, died of cancer of

the esophagus 40 years later. But, all my lifetime she suffered from severe

mental and physical problems. What caused all the problems? I'll never know,

I only experienced the effects, as a child growing up. Could it have been

RAI? I don't know. I'll never know. But I'm still deathly afraid of it!

I, for one, hope you stay here for years, and share with us your ongoing

experience post RAI, the ups and the downs, and get all the support in the

process that we can offer, as well as helping us all understand another

aspect of this disease.

Terry

>

> Reply-To: graves_support

> Date: Tue, 5 Mar 2002 10:24:42 -0500 (EST)

> To: graves_support

> Subject: Re: Holly

>

>

> I'll also admit that sharing my good (so far anyway) experience with RAI

> was a bit intimidating on this list -- most of the members who post seem

> so vehemently opposed to it that I kept sitting here wondering if I should

> hit the " send " button or not.

[Guest guest]

Patti,

Please, don't ever hesitate to share your experience within this list. We

are NOT closed minded, but, as you say, we've all heard from the % of people

who had bad experiences, and not the good. So, opinions are formed based on

what we are presented with. My endo has argued with me for years that RAI

would be my best option--and I've never, ever believed him, based partly on

what I have read here.

Also, my feeling is based, perhaps illogically, on my mother's experience--I

don't know for sure that she was radiated, I do know she had thyroid cancer,

a thyroidectomy 3 years before I was born, and ultimately, died of cancer of

the esophagus 40 years later. But, all my lifetime she suffered from severe

mental and physical problems. What caused all the problems? I'll never know,

I only experienced the effects, as a child growing up. Could it have been

RAI? I don't know. I'll never know. But I'm still deathly afraid of it!

I, for one, hope you stay here for years, and share with us your ongoing

experience post RAI, the ups and the downs, and get all the support in the

process that we can offer, as well as helping us all understand another

aspect of this disease.

Terry

>

> Reply-To: graves_support

> Date: Tue, 5 Mar 2002 10:24:42 -0500 (EST)

> To: graves_support

> Subject: Re: Holly

>

>

> I'll also admit that sharing my good (so far anyway) experience with RAI

> was a bit intimidating on this list -- most of the members who post seem

> so vehemently opposed to it that I kept sitting here wondering if I should

> hit the " send " button or not.

[Guest guest]

Hi Patti -

Don't be afraid to post that you had a good experience with RAI!

Sure, there are people who have had bad experiences with it, but

everyone is different and the way a person responds to different

treatments varies greatly. Just the nature of individualism. If

everyone responded the same, there'd only be one treatment! It sounds

like you had some unique circumstances (have Hashi's and GD) that may

have influenced the way your body responded to RAI. There is such a

wide range of problems and symptoms and other factors with this

disease. Don't think we're not happy that it has worked out for you!

The key is everyone has to determine what the right thing is for them

and that requires knowing all options and risks and benefits for each.

Glad it is working for you! And if you do find out where that 15%

stat comes from, I'd certainly like to know!

>

> > very little consideration is given to ATDs or surgery there.

Because of that

> > perceived bias, I wonder where _they_ got the 15% figure from. It

seems that

>

> I too, would be interested in knowing where they got that figure.

From my

> own experience (working in the computer industry), I've found that

people

> that have a problem with something tend to be a lot more vocal about

> something than the people NOT having a problem. ie: No one comes to

me and

> says " the network is running GREAT today.. thanks! " . I used to get

> people constantly coming to me with their complaints about the

network.

> Overall, the complaintants were maybe 10 people out of 200 -- but

they

> were the only ones coming. The 190 who didn't have any problems

were

> mostly silent.

>

> I'll also admit that sharing my good (so far anyway) experience

with RAI

> was a bit intimidating on this list -- most of the members who post

seem

> so vehemently opposed to it that I kept sitting here wondering if I

should

> hit the " send " button or not. It's entirely possible that the 15%

number

> is correct, and that people with good experiences just aren't on the

> support email lists, or are intimidated into keeping quiet. Of

course,

> it's also possible that the 15% number is utter garbage.

>

> Maybe I'll make this my next " spare time project " -- figure out

where they

> got that 15% number from.

>

> We've got 282 members here -- am I the ONLY one that had a pretty

good

> experience w/ RAI? Anyone else care to speak up?

>

> --patti

>

> *~*~*~*~*

> Patti Spicer patti@c...

>

>

> " The silence is as important as the noise. What gets left out is

> as important as what gets included "

> --Sara Lawrence-Lightfoot, author of " I've Known Rivers "

>

> http://www.cyphergirl.com - My photography, cookbooks, thyroid

info, and more!

[Guest guest]

Hi Patti -

Don't be afraid to post that you had a good experience with RAI!

Sure, there are people who have had bad experiences with it, but

everyone is different and the way a person responds to different

treatments varies greatly. Just the nature of individualism. If

everyone responded the same, there'd only be one treatment! It sounds

like you had some unique circumstances (have Hashi's and GD) that may

have influenced the way your body responded to RAI. There is such a

wide range of problems and symptoms and other factors with this

disease. Don't think we're not happy that it has worked out for you!

The key is everyone has to determine what the right thing is for them

and that requires knowing all options and risks and benefits for each.

Glad it is working for you! And if you do find out where that 15%

stat comes from, I'd certainly like to know!

>

> > very little consideration is given to ATDs or surgery there.

Because of that

> > perceived bias, I wonder where _they_ got the 15% figure from. It

seems that

>

> I too, would be interested in knowing where they got that figure.

From my

> own experience (working in the computer industry), I've found that

people

> that have a problem with something tend to be a lot more vocal about

> something than the people NOT having a problem. ie: No one comes to

me and

> says " the network is running GREAT today.. thanks! " . I used to get

> people constantly coming to me with their complaints about the

network.

> Overall, the complaintants were maybe 10 people out of 200 -- but

they

> were the only ones coming. The 190 who didn't have any problems

were

> mostly silent.

>

> I'll also admit that sharing my good (so far anyway) experience

with RAI

> was a bit intimidating on this list -- most of the members who post

seem

> so vehemently opposed to it that I kept sitting here wondering if I

should

> hit the " send " button or not. It's entirely possible that the 15%

number

> is correct, and that people with good experiences just aren't on the

> support email lists, or are intimidated into keeping quiet. Of

course,

> it's also possible that the 15% number is utter garbage.

>

> Maybe I'll make this my next " spare time project " -- figure out

where they

> got that 15% number from.

>

> We've got 282 members here -- am I the ONLY one that had a pretty

good

> experience w/ RAI? Anyone else care to speak up?

>

> --patti

>

> *~*~*~*~*

> Patti Spicer patti@c...

>

>

> " The silence is as important as the noise. What gets left out is

> as important as what gets included "

> --Sara Lawrence-Lightfoot, author of " I've Known Rivers "

>

> http://www.cyphergirl.com - My photography, cookbooks, thyroid

info, and more!

[Guest guest]

Holly,

I know it seems that some of us scare people off RAI but it is with good

reason. Today I heard from another person whose sister died from congestive

heart failure as a complication of RAI for GD. This happens more often than

people think. It happens because thyroid storm is so easily precipitated by

RAI. It's the short and long term risks of RAI that are so troubling and

these unnecessary deaths are so unsettling. While adjusting to different

doses of ATDs can be a nuisance, things will improve as doctors in this

country become more used to using anti-thyroid drugs. Surgery is also a

perfectly viable option. Take care, Elaine

[Guest guest]

Holly,

I know it seems that some of us scare people off RAI but it is with good

reason. Today I heard from another person whose sister died from congestive

heart failure as a complication of RAI for GD. This happens more often than

people think. It happens because thyroid storm is so easily precipitated by

RAI. It's the short and long term risks of RAI that are so troubling and

these unnecessary deaths are so unsettling. While adjusting to different

doses of ATDs can be a nuisance, things will improve as doctors in this

country become more used to using anti-thyroid drugs. Surgery is also a

perfectly viable option. Take care, Elaine

[Guest guest]

Holly,

I know it seems that some of us scare people off RAI but it is with good

reason. Today I heard from another person whose sister died from congestive

heart failure as a complication of RAI for GD. This happens more often than

people think. It happens because thyroid storm is so easily precipitated by

RAI. It's the short and long term risks of RAI that are so troubling and

these unnecessary deaths are so unsettling. While adjusting to different

doses of ATDs can be a nuisance, things will improve as doctors in this

country become more used to using anti-thyroid drugs. Surgery is also a

perfectly viable option. Take care, Elaine

[Guest guest]

Way to go Patti!

As one of the Graves' disasters I still applaud your post. Its important to

remind ourselves that if we had had a good experience with RAI the chances of

seeking this list would be much slimmer. As such, we are probably not

representitive of the Graves' community.

Freedom of choice would dictate that those of us who advocate informed consent

also advocate open discussion. Otherwise we are just preaching to the choir

aren't we?

Laurel

Re: Holly

> very little consideration is given to ATDs or surgery there. Because of that

> perceived bias, I wonder where _they_ got the 15% figure from. It seems that

I too, would be interested in knowing where they got that figure. From my

own experience (working in the computer industry), I've found that people

that have a problem with something tend to be a lot more vocal about

something than the people NOT having a problem. ie: No one comes to me and

says " the network is running GREAT today.. thanks! " . I used to get

people constantly coming to me with their complaints about the network.

Overall, the complaintants were maybe 10 people out of 200 -- but they

were the only ones coming. The 190 who didn't have any problems were

mostly silent.

I'll also admit that sharing my good (so far anyway) experience with RAI

was a bit intimidating on this list -- most of the members who post seem

so vehemently opposed to it that I kept sitting here wondering if I should

hit the " send " button or not. It's entirely possible that the 15% number

is correct, and that people with good experiences just aren't on the

support email lists, or are intimidated into keeping quiet. Of course,

it's also possible that the 15% number is utter garbage.

Maybe I'll make this my next " spare time project " -- figure out where they

got that 15% number from.

We've got 282 members here -- am I the ONLY one that had a pretty good

experience w/ RAI? Anyone else care to speak up?

--patti

*~*~*~*~*

Patti Spicer patti@...

" The silence is as important as the noise. What gets left out is

as important as what gets included "

--Sara Lawrence-Lightfoot, author of " I've Known Rivers "

http://www.cyphergirl.com - My photography, cookbooks, thyroid info, and more!

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

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 does not have the endorsement of

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

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

------

[Guest guest]

Way to go Patti!

As one of the Graves' disasters I still applaud your post. Its important to

remind ourselves that if we had had a good experience with RAI the chances of

seeking this list would be much slimmer. As such, we are probably not

representitive of the Graves' community.

Freedom of choice would dictate that those of us who advocate informed consent

also advocate open discussion. Otherwise we are just preaching to the choir

aren't we?

Laurel

Re: Holly

> very little consideration is given to ATDs or surgery there. Because of that

> perceived bias, I wonder where _they_ got the 15% figure from. It seems that

I too, would be interested in knowing where they got that figure. From my

own experience (working in the computer industry), I've found that people

that have a problem with something tend to be a lot more vocal about

something than the people NOT having a problem. ie: No one comes to me and

says " the network is running GREAT today.. thanks! " . I used to get

people constantly coming to me with their complaints about the network.

Overall, the complaintants were maybe 10 people out of 200 -- but they

were the only ones coming. The 190 who didn't have any problems were

mostly silent.

I'll also admit that sharing my good (so far anyway) experience with RAI

was a bit intimidating on this list -- most of the members who post seem

so vehemently opposed to it that I kept sitting here wondering if I should

hit the " send " button or not. It's entirely possible that the 15% number

is correct, and that people with good experiences just aren't on the

support email lists, or are intimidated into keeping quiet. Of course,

it's also possible that the 15% number is utter garbage.

Maybe I'll make this my next " spare time project " -- figure out where they

got that 15% number from.

We've got 282 members here -- am I the ONLY one that had a pretty good

experience w/ RAI? Anyone else care to speak up?

--patti

*~*~*~*~*

Patti Spicer patti@...

" The silence is as important as the noise. What gets left out is

as important as what gets included "

--Sara Lawrence-Lightfoot, author of " I've Known Rivers "

http://www.cyphergirl.com - My photography, cookbooks, thyroid info, and more!

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

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 does not have the endorsement of

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

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

------

[Guest guest]

Way to go Patti!

As one of the Graves' disasters I still applaud your post. Its important to

remind ourselves that if we had had a good experience with RAI the chances of

seeking this list would be much slimmer. As such, we are probably not

representitive of the Graves' community.

Freedom of choice would dictate that those of us who advocate informed consent

also advocate open discussion. Otherwise we are just preaching to the choir

aren't we?

Laurel

Re: Holly

> very little consideration is given to ATDs or surgery there. Because of that

> perceived bias, I wonder where _they_ got the 15% figure from. It seems that

I too, would be interested in knowing where they got that figure. From my

own experience (working in the computer industry), I've found that people

that have a problem with something tend to be a lot more vocal about

something than the people NOT having a problem. ie: No one comes to me and

says " the network is running GREAT today.. thanks! " . I used to get

people constantly coming to me with their complaints about the network.

Overall, the complaintants were maybe 10 people out of 200 -- but they

were the only ones coming. The 190 who didn't have any problems were

mostly silent.

I'll also admit that sharing my good (so far anyway) experience with RAI

was a bit intimidating on this list -- most of the members who post seem

so vehemently opposed to it that I kept sitting here wondering if I should

hit the " send " button or not. It's entirely possible that the 15% number

is correct, and that people with good experiences just aren't on the

support email lists, or are intimidated into keeping quiet. Of course,

it's also possible that the 15% number is utter garbage.

Maybe I'll make this my next " spare time project " -- figure out where they

got that 15% number from.

We've got 282 members here -- am I the ONLY one that had a pretty good

experience w/ RAI? Anyone else care to speak up?

--patti

*~*~*~*~*

Patti Spicer patti@...

" The silence is as important as the noise. What gets left out is

as important as what gets included "

--Sara Lawrence-Lightfoot, author of " I've Known Rivers "

http://www.cyphergirl.com - My photography, cookbooks, thyroid info, and more!

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

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 does not have the endorsement of

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

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

------

[Guest guest]

Hi Holly

I have recieved many posts from you over the last few days.

I am really impressed that you have taken the time to research your options so

thoughly. No matter what may happen

in the future at least you'll be one of the 'better informed'. So the last 7

months is by no means wasted. I do

understand that you are referring to the illness and how you have felt. But I

guess it is just one of those things

we have to live with. We have been the ones chosen to get GD for whatever reason

and we have to accept that. Others

live their whole lives with nothing worse than a cold occasionally, while others

aren't so lucky. On the whole

spectrum of what is possible I think we are still lucky.

Also you may already know that even if you have surgery or RAI you'll be on meds

likely for the rest of your life

and will have to be monitred regularily. I was stabilised by the middle of my

last pregnancy and at the end of it my

endo only wanted to see me 6 monthly. It is more frequent now I'm pregnant

again. But I guess I'm reminding you that

you'll still have some ups and downs, hypers and hypos that are generally caused

by lifestyle and nutrition issues,

meds variantions and GD activity.

I agree there are many people who never have problems after their initial

treatment. But my bet is that some of them

don't get ongoing montitoring after awhile and have 'learned' to live with the

ups and downs and don't even notice

them anymore or put it all down to 'feeling a bit off' or 'stress'.

No matter what it is the early stages that are the hardest to cope with. At

least until you learn how to respond to

your needs in a healthy way, then we start to feel better overall.

Just some thoughts for you, hope they help.

Cheers

Caroline

" Sutherland, Holly " wrote:

> Hi -

>

> The usual reasons that mean nothing to me as I've found good surgeons. 1.

> The scar-which I know for a fact is not a problem. Was it Darnell or

> someone else (I can't remember for sure) who said that her scar healed

> nicely and is almost unnoticeable? My brother-in-law had the surgery twice

> with his thyroid cancer and they went in the same place both times, and even

> with that, his scar is almost undetectable. 2. Possible damage to the

> voice or parathyroid-that's the whole reason I found surgeons who do this

> several times a month and use nerve monitoring to prevent damage to the

> vocal chords. 3. Possible recurrence of the symptoms because some of the

> thyroid is left. This is a real issue, as I've discovered people who have

> had this surgery and had symptoms return. One of them was after 20 years,

> which I think I could handle. I'd be 57 after 20 years, and not as concerned

> about developing cancer in my lifetime if I chose the RAI then. But the

> other was in a relatively short time after the surgery. Of course, my

> understanding is that some of the thyroid remains after RAI as well. The

> thing is to have enough of the thyroid removed so as to lesson the chance of

> that happening. I think I saw someone out there who was having 98% removed.

> The one who had a recurrence soon after the surgery had 80% removed, I think

> it was.

>

> The person who told me about the 15% was one of the moderators, and they

> couldn't site a study, but thought they had heard that percentage somewhere,

> so it's by no means exact or official. But, out of 4 people I know, 3 don't

> seem to have had any trouble, and if I remove the third who had it fairly

> recently, then that's still 50%. I'm by no means advocating RAI. But it is

> an option, and possibly the best option for some people, and I think it's

> unfair for us to completely scare people away from it. I've seen that

> happen over and over as new people join our group. There are people out

> there who are not good candidates for surgery because of health problems or

> allergies to anesthesia. Or they're just plain terrified of surgery. They

> might also be unable to tolerate ATDs. Or they might not respond well to

> the ATDs and suffer unnecessarily for years when the RAI could have gotten

> them back on track again. I do know that some people have the RAI and go

> on to live healthy, productive lives. People do make an informed choice to

> have it. It isn't always just shoved blindly down our throats. Granted, it

> is most of the time, but not always.

>

> I really sick of taking the ATDs, and I have to make myself keep trying with

> them. I wonder if I'm making the right choice. I got my labs yesterday,

> and I'm now more hyper than I was when I started. This after being severely

> hypo in November and December. I've basically wasted 7 months of my life

> suffering and worrying, and I wonder how long I should continue doing this.

> Carrying on with this disease is causing long-term health problems. I worry

> about my heart. I worry that my mind is going to be permanently damaged.

> It's affecting my career. It's affecting my relationship with my daughter.

> If I die tomorrow, will it have been worth it to have " lost " these last 7

> months? We're all so different, and we need to be able to take our

> differences and make choices that are best for us individually. It's hard

> to do when we hear nothing but horror stories about one of our options.

> That's all I'm trying to say.

>

> Take care,

> Holly

[Guest guest]

Hi Holly

I have recieved many posts from you over the last few days.

I am really impressed that you have taken the time to research your options so

thoughly. No matter what may happen

in the future at least you'll be one of the 'better informed'. So the last 7

months is by no means wasted. I do

understand that you are referring to the illness and how you have felt. But I

guess it is just one of those things

we have to live with. We have been the ones chosen to get GD for whatever reason

and we have to accept that. Others

live their whole lives with nothing worse than a cold occasionally, while others

aren't so lucky. On the whole

spectrum of what is possible I think we are still lucky.

Also you may already know that even if you have surgery or RAI you'll be on meds

likely for the rest of your life

and will have to be monitred regularily. I was stabilised by the middle of my

last pregnancy and at the end of it my

endo only wanted to see me 6 monthly. It is more frequent now I'm pregnant

again. But I guess I'm reminding you that

you'll still have some ups and downs, hypers and hypos that are generally caused

by lifestyle and nutrition issues,

meds variantions and GD activity.

I agree there are many people who never have problems after their initial

treatment. But my bet is that some of them

don't get ongoing montitoring after awhile and have 'learned' to live with the

ups and downs and don't even notice

them anymore or put it all down to 'feeling a bit off' or 'stress'.

No matter what it is the early stages that are the hardest to cope with. At

least until you learn how to respond to

your needs in a healthy way, then we start to feel better overall.

Just some thoughts for you, hope they help.

Cheers

Caroline

" Sutherland, Holly " wrote:

> Hi -

>

> The usual reasons that mean nothing to me as I've found good surgeons. 1.

> The scar-which I know for a fact is not a problem. Was it Darnell or

> someone else (I can't remember for sure) who said that her scar healed

> nicely and is almost unnoticeable? My brother-in-law had the surgery twice

> with his thyroid cancer and they went in the same place both times, and even

> with that, his scar is almost undetectable. 2. Possible damage to the

> voice or parathyroid-that's the whole reason I found surgeons who do this

> several times a month and use nerve monitoring to prevent damage to the

> vocal chords. 3. Possible recurrence of the symptoms because some of the

> thyroid is left. This is a real issue, as I've discovered people who have

> had this surgery and had symptoms return. One of them was after 20 years,

> which I think I could handle. I'd be 57 after 20 years, and not as concerned

> about developing cancer in my lifetime if I chose the RAI then. But the

> other was in a relatively short time after the surgery. Of course, my

> understanding is that some of the thyroid remains after RAI as well. The

> thing is to have enough of the thyroid removed so as to lesson the chance of

> that happening. I think I saw someone out there who was having 98% removed.

> The one who had a recurrence soon after the surgery had 80% removed, I think

> it was.

>

> The person who told me about the 15% was one of the moderators, and they

> couldn't site a study, but thought they had heard that percentage somewhere,

> so it's by no means exact or official. But, out of 4 people I know, 3 don't

> seem to have had any trouble, and if I remove the third who had it fairly

> recently, then that's still 50%. I'm by no means advocating RAI. But it is

> an option, and possibly the best option for some people, and I think it's

> unfair for us to completely scare people away from it. I've seen that

> happen over and over as new people join our group. There are people out

> there who are not good candidates for surgery because of health problems or

> allergies to anesthesia. Or they're just plain terrified of surgery. They

> might also be unable to tolerate ATDs. Or they might not respond well to

> the ATDs and suffer unnecessarily for years when the RAI could have gotten

> them back on track again. I do know that some people have the RAI and go

> on to live healthy, productive lives. People do make an informed choice to

> have it. It isn't always just shoved blindly down our throats. Granted, it

> is most of the time, but not always.

>

> I really sick of taking the ATDs, and I have to make myself keep trying with

> them. I wonder if I'm making the right choice. I got my labs yesterday,

> and I'm now more hyper than I was when I started. This after being severely

> hypo in November and December. I've basically wasted 7 months of my life

> suffering and worrying, and I wonder how long I should continue doing this.

> Carrying on with this disease is causing long-term health problems. I worry

> about my heart. I worry that my mind is going to be permanently damaged.

> It's affecting my career. It's affecting my relationship with my daughter.

> If I die tomorrow, will it have been worth it to have " lost " these last 7

> months? We're all so different, and we need to be able to take our

> differences and make choices that are best for us individually. It's hard

> to do when we hear nothing but horror stories about one of our options.

> That's all I'm trying to say.

>

> Take care,

> Holly

[Guest guest]

Hi Holly

I have recieved many posts from you over the last few days.

I am really impressed that you have taken the time to research your options so

thoughly. No matter what may happen

in the future at least you'll be one of the 'better informed'. So the last 7

months is by no means wasted. I do

understand that you are referring to the illness and how you have felt. But I

guess it is just one of those things

we have to live with. We have been the ones chosen to get GD for whatever reason

and we have to accept that. Others

live their whole lives with nothing worse than a cold occasionally, while others

aren't so lucky. On the whole

spectrum of what is possible I think we are still lucky.

Also you may already know that even if you have surgery or RAI you'll be on meds

likely for the rest of your life

and will have to be monitred regularily. I was stabilised by the middle of my

last pregnancy and at the end of it my

endo only wanted to see me 6 monthly. It is more frequent now I'm pregnant

again. But I guess I'm reminding you that

you'll still have some ups and downs, hypers and hypos that are generally caused

by lifestyle and nutrition issues,

meds variantions and GD activity.

I agree there are many people who never have problems after their initial

treatment. But my bet is that some of them

don't get ongoing montitoring after awhile and have 'learned' to live with the

ups and downs and don't even notice

them anymore or put it all down to 'feeling a bit off' or 'stress'.

No matter what it is the early stages that are the hardest to cope with. At

least until you learn how to respond to

your needs in a healthy way, then we start to feel better overall.

Just some thoughts for you, hope they help.

Cheers

Caroline

" Sutherland, Holly " wrote:

> Hi -

>

> The usual reasons that mean nothing to me as I've found good surgeons. 1.

> The scar-which I know for a fact is not a problem. Was it Darnell or

> someone else (I can't remember for sure) who said that her scar healed

> nicely and is almost unnoticeable? My brother-in-law had the surgery twice

> with his thyroid cancer and they went in the same place both times, and even

> with that, his scar is almost undetectable. 2. Possible damage to the

> voice or parathyroid-that's the whole reason I found surgeons who do this

> several times a month and use nerve monitoring to prevent damage to the

> vocal chords. 3. Possible recurrence of the symptoms because some of the

> thyroid is left. This is a real issue, as I've discovered people who have

> had this surgery and had symptoms return. One of them was after 20 years,

> which I think I could handle. I'd be 57 after 20 years, and not as concerned

> about developing cancer in my lifetime if I chose the RAI then. But the

> other was in a relatively short time after the surgery. Of course, my

> understanding is that some of the thyroid remains after RAI as well. The

> thing is to have enough of the thyroid removed so as to lesson the chance of

> that happening. I think I saw someone out there who was having 98% removed.

> The one who had a recurrence soon after the surgery had 80% removed, I think

> it was.

>

> The person who told me about the 15% was one of the moderators, and they

> couldn't site a study, but thought they had heard that percentage somewhere,

> so it's by no means exact or official. But, out of 4 people I know, 3 don't

> seem to have had any trouble, and if I remove the third who had it fairly

> recently, then that's still 50%. I'm by no means advocating RAI. But it is

> an option, and possibly the best option for some people, and I think it's

> unfair for us to completely scare people away from it. I've seen that

> happen over and over as new people join our group. There are people out

> there who are not good candidates for surgery because of health problems or

> allergies to anesthesia. Or they're just plain terrified of surgery. They

> might also be unable to tolerate ATDs. Or they might not respond well to

> the ATDs and suffer unnecessarily for years when the RAI could have gotten

> them back on track again. I do know that some people have the RAI and go

> on to live healthy, productive lives. People do make an informed choice to

> have it. It isn't always just shoved blindly down our throats. Granted, it

> is most of the time, but not always.

>

> I really sick of taking the ATDs, and I have to make myself keep trying with

> them. I wonder if I'm making the right choice. I got my labs yesterday,

> and I'm now more hyper than I was when I started. This after being severely

> hypo in November and December. I've basically wasted 7 months of my life

> suffering and worrying, and I wonder how long I should continue doing this.

> Carrying on with this disease is causing long-term health problems. I worry

> about my heart. I worry that my mind is going to be permanently damaged.

> It's affecting my career. It's affecting my relationship with my daughter.

> If I die tomorrow, will it have been worth it to have " lost " these last 7

> months? We're all so different, and we need to be able to take our

> differences and make choices that are best for us individually. It's hard

> to do when we hear nothing but horror stories about one of our options.

> That's all I'm trying to say.

>

> Take care,

> Holly

[Guest guest]

Hi Holly-

One reason that I do come to this group is because I can put down what I've

gone through since RAI without constantly having to bicker about what's

caused all my problems all these years. It is a support group for me too

and right now I desperately need one. I don't have any idea if it's because

of the radiation from RAI or the years of hypothyroidism. I tend to think

that the years of hypothyroidism caused the problems. And if they couldn't

figure out that I was hypothyroid for many years, I'm sure that there are

many others out there like me.

Jeeps! I'm a biologist married to an academic physician. If we didn't know

what was going on, what happens to the person that doesn't have the

resources we have?

I'm infertile. One could argue that I'm old, have autoimmune disease and

PCOS. I have plenty of ovarian reserve, no autoantibodies (characteristic

of autoimmune disease patients) that cause infertility and the PCOS is very

mild and treated. There is no history of infertility in my family even

amongst older gals. So what does that leave?

The studies that suggest RAI doesn't cause any problems are all flawed.

There are far too many variables that are uncontrollable. I've said it

before and I'll say it again. If I would have designed a thesis like that,

I would have been laughed out of the university.

I would think RAI might be acceptable if they understood everything about

thyroid function. They freely admit that they don't and since they don't,

they shouldn't be recommending something that permanently destroys the

thyroid in younger people if it can be avoided.

Ah! There's my 2 cents again. You guys rich yet?

Take care,

> Hi -

>

> The usual reasons that mean nothing to me as I've found good surgeons. 1.

> The scar-which I know for a fact is not a problem. Was it Darnell or

> someone else (I can't remember for sure) who said that her scar healed

> nicely and is almost unnoticeable? My brother-in-law had the surgery

twice

> with his thyroid cancer and they went in the same place both times, and

even

> with that, his scar is almost undetectable. 2. Possible damage to the

> voice or parathyroid-that's the whole reason I found surgeons who do this

> several times a month and use nerve monitoring to prevent damage to the

> vocal chords. 3. Possible recurrence of the symptoms because some of the

> thyroid is left. This is a real issue, as I've discovered people who have

> had this surgery and had symptoms return. One of them was after 20 years,

> which I think I could handle. I'd be 57 after 20 years, and not as

concerned

> about developing cancer in my lifetime if I chose the RAI then. But the

> other was in a relatively short time after the surgery. Of course, my

> understanding is that some of the thyroid remains after RAI as well. The

> thing is to have enough of the thyroid removed so as to lesson the chance

of

> that happening. I think I saw someone out there who was having 98%

removed.

> The one who had a recurrence soon after the surgery had 80% removed, I

think

> it was.

>

> The person who told me about the 15% was one of the moderators, and they

> couldn't site a study, but thought they had heard that percentage

somewhere,

> so it's by no means exact or official. But, out of 4 people I know, 3

don't

> seem to have had any trouble, and if I remove the third who had it fairly

> recently, then that's still 50%. I'm by no means advocating RAI. But it

is

> an option, and possibly the best option for some people, and I think it's

> unfair for us to completely scare people away from it. I've seen that

> happen over and over as new people join our group. There are people out

> there who are not good candidates for surgery because of health problems

or

> allergies to anesthesia. Or they're just plain terrified of surgery. They

> might also be unable to tolerate ATDs. Or they might not respond well to

> the ATDs and suffer unnecessarily for years when the RAI could have gotten

> them back on track again. I do know that some people have the RAI and

go

> on to live healthy, productive lives. People do make an informed choice

to

> have it. It isn't always just shoved blindly down our throats. Granted,

it

> is most of the time, but not always.

>

> I really sick of taking the ATDs, and I have to make myself keep trying

with

> them. I wonder if I'm making the right choice. I got my labs yesterday,

> and I'm now more hyper than I was when I started. This after being

severely

> hypo in November and December. I've basically wasted 7 months of my life

> suffering and worrying, and I wonder how long I should continue doing

this.

> Carrying on with this disease is causing long-term health problems. I

worry

> about my heart. I worry that my mind is going to be permanently damaged.

> It's affecting my career. It's affecting my relationship with my

daughter.

> If I die tomorrow, will it have been worth it to have " lost " these last 7

> months? We're all so different, and we need to be able to take our

> differences and make choices that are best for us individually. It's hard

> to do when we hear nothing but horror stories about one of our options.

> That's all I'm trying to say.

>

> Take care,

> Holly

[Guest guest]

Hi Holly-

One reason that I do come to this group is because I can put down what I've

gone through since RAI without constantly having to bicker about what's

caused all my problems all these years. It is a support group for me too

and right now I desperately need one. I don't have any idea if it's because

of the radiation from RAI or the years of hypothyroidism. I tend to think

that the years of hypothyroidism caused the problems. And if they couldn't

figure out that I was hypothyroid for many years, I'm sure that there are

many others out there like me.

Jeeps! I'm a biologist married to an academic physician. If we didn't know

what was going on, what happens to the person that doesn't have the

resources we have?

I'm infertile. One could argue that I'm old, have autoimmune disease and

PCOS. I have plenty of ovarian reserve, no autoantibodies (characteristic

of autoimmune disease patients) that cause infertility and the PCOS is very

mild and treated. There is no history of infertility in my family even

amongst older gals. So what does that leave?

The studies that suggest RAI doesn't cause any problems are all flawed.

There are far too many variables that are uncontrollable. I've said it

before and I'll say it again. If I would have designed a thesis like that,

I would have been laughed out of the university.

I would think RAI might be acceptable if they understood everything about

thyroid function. They freely admit that they don't and since they don't,

they shouldn't be recommending something that permanently destroys the

thyroid in younger people if it can be avoided.

Ah! There's my 2 cents again. You guys rich yet?

Take care,

> Hi -

>

> The usual reasons that mean nothing to me as I've found good surgeons. 1.

> The scar-which I know for a fact is not a problem. Was it Darnell or

> someone else (I can't remember for sure) who said that her scar healed

> nicely and is almost unnoticeable? My brother-in-law had the surgery

twice

> with his thyroid cancer and they went in the same place both times, and

even

> with that, his scar is almost undetectable. 2. Possible damage to the

> voice or parathyroid-that's the whole reason I found surgeons who do this

> several times a month and use nerve monitoring to prevent damage to the

> vocal chords. 3. Possible recurrence of the symptoms because some of the

> thyroid is left. This is a real issue, as I've discovered people who have

> had this surgery and had symptoms return. One of them was after 20 years,

> which I think I could handle. I'd be 57 after 20 years, and not as

concerned

> about developing cancer in my lifetime if I chose the RAI then. But the

> other was in a relatively short time after the surgery. Of course, my

> understanding is that some of the thyroid remains after RAI as well. The

> thing is to have enough of the thyroid removed so as to lesson the chance

of

> that happening. I think I saw someone out there who was having 98%

removed.

> The one who had a recurrence soon after the surgery had 80% removed, I

think

> it was.

>

> The person who told me about the 15% was one of the moderators, and they

> couldn't site a study, but thought they had heard that percentage

somewhere,

> so it's by no means exact or official. But, out of 4 people I know, 3

don't

> seem to have had any trouble, and if I remove the third who had it fairly

> recently, then that's still 50%. I'm by no means advocating RAI. But it

is

> an option, and possibly the best option for some people, and I think it's

> unfair for us to completely scare people away from it. I've seen that

> happen over and over as new people join our group. There are people out

> there who are not good candidates for surgery because of health problems

or

> allergies to anesthesia. Or they're just plain terrified of surgery. They

> might also be unable to tolerate ATDs. Or they might not respond well to

> the ATDs and suffer unnecessarily for years when the RAI could have gotten

> them back on track again. I do know that some people have the RAI and

go

> on to live healthy, productive lives. People do make an informed choice

to

> have it. It isn't always just shoved blindly down our throats. Granted,

it

> is most of the time, but not always.

>

> I really sick of taking the ATDs, and I have to make myself keep trying

with

> them. I wonder if I'm making the right choice. I got my labs yesterday,

> and I'm now more hyper than I was when I started. This after being

severely

> hypo in November and December. I've basically wasted 7 months of my life

> suffering and worrying, and I wonder how long I should continue doing

this.

> Carrying on with this disease is causing long-term health problems. I

worry

> about my heart. I worry that my mind is going to be permanently damaged.

> It's affecting my career. It's affecting my relationship with my

daughter.

> If I die tomorrow, will it have been worth it to have " lost " these last 7

> months? We're all so different, and we need to be able to take our

> differences and make choices that are best for us individually. It's hard

> to do when we hear nothing but horror stories about one of our options.

> That's all I'm trying to say.

>

> Take care,

> Holly

[Guest guest]

Hi Holly-

One reason that I do come to this group is because I can put down what I've

gone through since RAI without constantly having to bicker about what's

caused all my problems all these years. It is a support group for me too

and right now I desperately need one. I don't have any idea if it's because

of the radiation from RAI or the years of hypothyroidism. I tend to think

that the years of hypothyroidism caused the problems. And if they couldn't

figure out that I was hypothyroid for many years, I'm sure that there are

many others out there like me.

Jeeps! I'm a biologist married to an academic physician. If we didn't know

what was going on, what happens to the person that doesn't have the

resources we have?

I'm infertile. One could argue that I'm old, have autoimmune disease and

PCOS. I have plenty of ovarian reserve, no autoantibodies (characteristic

of autoimmune disease patients) that cause infertility and the PCOS is very

mild and treated. There is no history of infertility in my family even

amongst older gals. So what does that leave?

The studies that suggest RAI doesn't cause any problems are all flawed.

There are far too many variables that are uncontrollable. I've said it

before and I'll say it again. If I would have designed a thesis like that,

I would have been laughed out of the university.

I would think RAI might be acceptable if they understood everything about

thyroid function. They freely admit that they don't and since they don't,

they shouldn't be recommending something that permanently destroys the

thyroid in younger people if it can be avoided.

Ah! There's my 2 cents again. You guys rich yet?

Take care,

> Hi -

>

> The usual reasons that mean nothing to me as I've found good surgeons. 1.

> The scar-which I know for a fact is not a problem. Was it Darnell or

> someone else (I can't remember for sure) who said that her scar healed

> nicely and is almost unnoticeable? My brother-in-law had the surgery

twice

> with his thyroid cancer and they went in the same place both times, and

even

> with that, his scar is almost undetectable. 2. Possible damage to the

> voice or parathyroid-that's the whole reason I found surgeons who do this

> several times a month and use nerve monitoring to prevent damage to the

> vocal chords. 3. Possible recurrence of the symptoms because some of the

> thyroid is left. This is a real issue, as I've discovered people who have

> had this surgery and had symptoms return. One of them was after 20 years,

> which I think I could handle. I'd be 57 after 20 years, and not as

concerned

> about developing cancer in my lifetime if I chose the RAI then. But the

> other was in a relatively short time after the surgery. Of course, my

> understanding is that some of the thyroid remains after RAI as well. The

> thing is to have enough of the thyroid removed so as to lesson the chance

of

> that happening. I think I saw someone out there who was having 98%

removed.

> The one who had a recurrence soon after the surgery had 80% removed, I

think

> it was.

>

> The person who told me about the 15% was one of the moderators, and they

> couldn't site a study, but thought they had heard that percentage

somewhere,

> so it's by no means exact or official. But, out of 4 people I know, 3

don't

> seem to have had any trouble, and if I remove the third who had it fairly

> recently, then that's still 50%. I'm by no means advocating RAI. But it

is

> an option, and possibly the best option for some people, and I think it's

> unfair for us to completely scare people away from it. I've seen that

> happen over and over as new people join our group. There are people out

> there who are not good candidates for surgery because of health problems

or

> allergies to anesthesia. Or they're just plain terrified of surgery. They

> might also be unable to tolerate ATDs. Or they might not respond well to

> the ATDs and suffer unnecessarily for years when the RAI could have gotten

> them back on track again. I do know that some people have the RAI and

go

> on to live healthy, productive lives. People do make an informed choice

to

> have it. It isn't always just shoved blindly down our throats. Granted,

it

> is most of the time, but not always.

>

> I really sick of taking the ATDs, and I have to make myself keep trying

with

> them. I wonder if I'm making the right choice. I got my labs yesterday,

> and I'm now more hyper than I was when I started. This after being

severely

> hypo in November and December. I've basically wasted 7 months of my life

> suffering and worrying, and I wonder how long I should continue doing

this.

> Carrying on with this disease is causing long-term health problems. I

worry

> about my heart. I worry that my mind is going to be permanently damaged.

> It's affecting my career. It's affecting my relationship with my

daughter.

> If I die tomorrow, will it have been worth it to have " lost " these last 7

> months? We're all so different, and we need to be able to take our

> differences and make choices that are best for us individually. It's hard

> to do when we hear nothing but horror stories about one of our options.

> That's all I'm trying to say.

>

> Take care,

> Holly

[Guest guest]

Hi Holly -

Thanks for sharing this with me. You're right it sounds like all the " usual "

reasons I've already read or heard from other people. Reason 1 and 2 seem

like not really an issue to me. Reason 3 is the only one that really

concerns me, too. I have some statistics somewhere on the recurrence rate

and it was rather low, particularly with a total thyroidectomy (duh!). But

even with a subtotal, the recurrence rate didn't seem all that high, and I

think I remember it was more over a period of like 10 years or more.

>This is a real issue, as I've discovered people who have

>had this surgery and had symptoms return. One of them was after 20 years,

>which I think I could handle. I'd be 57 after 20 years, and not as

concerned

>about developing cancer in my lifetime if I chose the RAI then. But the

>other was in a relatively short time after the surgery. Of course, my

>understanding is that some of the thyroid remains after RAI as well. The

>thing is to have enough of the thyroid removed so as to lesson the chance

of

>that happening.

Boy, I tell you, your thought process in making this decision was so

identical to mine - I knew exactly what you were saying! It was like you

were reading my mind! I think the decision to do RAI is definitely different

when you take age into account.

>But it is

>an option, and possibly the best option for some people, and I think it's

>unfair for us to completely scare people away from it. I've seen that

>happen over and over as new people join our group. There are people out

>there who are not good candidates for surgery because of health problems or

>allergies to anesthesia. Or they're just plain terrified of surgery. They

>might also be unable to tolerate ATDs. Or they might not respond well to

>the ATDs and suffer unnecessarily for years when the RAI could have gotten

>them back on track again. I do know that some people have the RAI and go

>on to live healthy, productive lives. People do make an informed choice to

>have it. It isn't always just shoved blindly down our throats. Granted,

it

>is most of the time, but not always.

Amen to that. I don't necessarily think people are trying to " scare " people

out of having RAI, I think it's more a matter or urging them to give more

thought to the decision and at least find out about other options. And if it

takes telling people all the bad things that have happened to them since

having RAI to make them stop and think, well maybe that's better than just

jumping in blindly and having to regret something you were pushed into

doing. I think it's too often the case that a doctor present RAI as the

" only " option and like you said, patients don't receive all the facts they

need to better make their own decision. I have to admit I was tempted to

have RAI because it sounded like it was the quickest and easiest solution,

and at that point, I just wanted to feel better sooner rather than later. I

think a lot of people can relate to that!

>I really sick of taking the ATDs, and I have to make myself keep trying

with

>them. I wonder if I'm making the right choice. I got my labs yesterday,

>and I'm now more hyper than I was when I started. This after being

severely

>hypo in November and December. I've basically wasted 7 months of my life

>suffering and worrying, and I wonder how long I should continue doing this.

>Carrying on with this disease is causing long-term health problems. I

worry

>about my heart. I worry that my mind is going to be permanently damaged.

>It's affecting my career. It's affecting my relationship with my daughter.

>If I die tomorrow, will it have been worth it to have " lost " these last 7

>months?

Oh, Holly, my heart aches for you - I have felt similarly! I am so sorry

you're more hyper - what's the doc doing? Increasing your dosage now?

Hopefully that will bring it back down! Don't feel you've wasted the last 7

months. I'm sure if you were able to ask you daughter if she thought it was

a waste, she wouldn't think so in the least! I know there are days that I

have been a total and complete b*tch to my kids and hubby and I wonder why

the heck they would want me around when I'm hyper. But then I chill out and

realize that it's not really me, it's the stupid disease and while the kids

may not understand that, they know that I love them dearly and that I'm not

always the evil mom! Just the fact that you're there with your daughter is

enough for her - much better than the alternative from her point of view,

I'm certain! I try and focus on the thought that I'm not only trying to get

better for myself, but for them as well.

If you ever need to talk about how " evil mom " shows up and disrupts your

relationship with your daughter, or just how it sucks to be a mom with GD,

or just feel like venting, feel free to email me!

It's going to get better one way or another!

-----

[Guest guest]

Hi Holly -

Thanks for sharing this with me. You're right it sounds like all the " usual "

reasons I've already read or heard from other people. Reason 1 and 2 seem

like not really an issue to me. Reason 3 is the only one that really

concerns me, too. I have some statistics somewhere on the recurrence rate

and it was rather low, particularly with a total thyroidectomy (duh!). But

even with a subtotal, the recurrence rate didn't seem all that high, and I

think I remember it was more over a period of like 10 years or more.

>This is a real issue, as I've discovered people who have

>had this surgery and had symptoms return. One of them was after 20 years,

>which I think I could handle. I'd be 57 after 20 years, and not as

concerned

>about developing cancer in my lifetime if I chose the RAI then. But the

>other was in a relatively short time after the surgery. Of course, my

>understanding is that some of the thyroid remains after RAI as well. The

>thing is to have enough of the thyroid removed so as to lesson the chance

of

>that happening.

Boy, I tell you, your thought process in making this decision was so

identical to mine - I knew exactly what you were saying! It was like you

were reading my mind! I think the decision to do RAI is definitely different

when you take age into account.

>But it is

>an option, and possibly the best option for some people, and I think it's

>unfair for us to completely scare people away from it. I've seen that

>happen over and over as new people join our group. There are people out

>there who are not good candidates for surgery because of health problems or

>allergies to anesthesia. Or they're just plain terrified of surgery. They

>might also be unable to tolerate ATDs. Or they might not respond well to

>the ATDs and suffer unnecessarily for years when the RAI could have gotten

>them back on track again. I do know that some people have the RAI and go

>on to live healthy, productive lives. People do make an informed choice to

>have it. It isn't always just shoved blindly down our throats. Granted,

it

>is most of the time, but not always.

Amen to that. I don't necessarily think people are trying to " scare " people

out of having RAI, I think it's more a matter or urging them to give more

thought to the decision and at least find out about other options. And if it

takes telling people all the bad things that have happened to them since

having RAI to make them stop and think, well maybe that's better than just

jumping in blindly and having to regret something you were pushed into

doing. I think it's too often the case that a doctor present RAI as the

" only " option and like you said, patients don't receive all the facts they

need to better make their own decision. I have to admit I was tempted to

have RAI because it sounded like it was the quickest and easiest solution,

and at that point, I just wanted to feel better sooner rather than later. I

think a lot of people can relate to that!

>I really sick of taking the ATDs, and I have to make myself keep trying

with

>them. I wonder if I'm making the right choice. I got my labs yesterday,

>and I'm now more hyper than I was when I started. This after being

severely

>hypo in November and December. I've basically wasted 7 months of my life

>suffering and worrying, and I wonder how long I should continue doing this.

>Carrying on with this disease is causing long-term health problems. I

worry

>about my heart. I worry that my mind is going to be permanently damaged.

>It's affecting my career. It's affecting my relationship with my daughter.

>If I die tomorrow, will it have been worth it to have " lost " these last 7

>months?

Oh, Holly, my heart aches for you - I have felt similarly! I am so sorry

you're more hyper - what's the doc doing? Increasing your dosage now?

Hopefully that will bring it back down! Don't feel you've wasted the last 7

months. I'm sure if you were able to ask you daughter if she thought it was

a waste, she wouldn't think so in the least! I know there are days that I

have been a total and complete b*tch to my kids and hubby and I wonder why

the heck they would want me around when I'm hyper. But then I chill out and

realize that it's not really me, it's the stupid disease and while the kids

may not understand that, they know that I love them dearly and that I'm not

always the evil mom! Just the fact that you're there with your daughter is

enough for her - much better than the alternative from her point of view,

I'm certain! I try and focus on the thought that I'm not only trying to get

better for myself, but for them as well.

If you ever need to talk about how " evil mom " shows up and disrupts your

relationship with your daughter, or just how it sucks to be a mom with GD,

or just feel like venting, feel free to email me!

It's going to get better one way or another!

-----