Re: RAI or Surgery?

[Guest guest]

Welcome to the group, Mrs. S--

You will find more informed folks besides me weighing in on this subject

before long, but I know how that desperate wait for an answer can seem. The

best advice is DON'T jump into anything, especially RAI, without taking a

long, careful time to read and consider your options. Anti-thyroid drugs

work, often with no side-effects. I have been on them for most of the last 7

years, and with proper attention to your own symptoms, and regular blood

work, you can go with those and enter remission eventually. I have had one

remission, but stress brought everything back, unfortunately. However, I am

close to another, on very little of the drug right now.

RAI is permanent, and has many, many undesired side effects. It kills your

thyroid, over time. It also subjects you to a lot of radiation. Once your

thyroid is totally dead, you are permanently hypOthyroid, and must replace

thyroid hormone for the rest of your life--and the replacements are not

" perfect " , from what I read here, they do not mimic your own thyroid hormone

well enough to make you feel truly well. Jody, and other will have

more to say on that subject.

I personally would not feel good about trying to get pregnant after RAI, if

I were young enough to do that again. If you go to the archives here, and

start reading, you'll find out how miserable many of the group's members who

have gone the RAI route without researching it, are. There is one group

member, Caroline, who opted for surgery rather than RAI cause she wanted to

get pregnant, and did, immediately after the treatment--and there are

pictures of new baby Dylan right now, on line.

You can get pregnant on one of the anti-thyroids, PTU. The other, tapazole

(generic is methimazole) is not recommended. The bottom line is, do all your

research and don't let a pushy doctor make you do something you'll have to

live with for the rest of your life. Most of the doctors seem to think that

hypothyroid patients are " easier to control " than hyper. One reason is, they

are often low energy and foggy brained, so if that makes one " easier " to

control, who cares?

Do share your blood work results here, there are people, especially Elaine

, who just published a book on Graves Disease (check Amazon.com), who

will help you interpret what's going on, and do come here to read, and know

we're a friendly group all in the same boat you've just stepped into.

Terry

>

> Reply-To: graves_support

> Date: Fri, 28 Sep 2001 15:42:26 -0400

> To: <graves_support >

> Subject: RAI or Surgery?

>

> Hello, I need help. I have graves disease and am 27 years old. My doctor

> just gave me the option of RAI or surgery. He prefers RAI. I have heard some

> bad stuff about this little pill and would prefer some input. He also told me

> that with either option I would have to wait a year to try and get pregnant.

> Please help I am desperate.

> ----- OriginMessage al -----

> From: M chik

> To: graves_support

> Sent: Friday, September 28, 2001 11:46

> Subject: My new values; input needed

>

>

> After a year on 50x3 PTU , my free t3 and free t4 were in range and my TSH

> hadn't budged, and my doctor said sometimes TSH takes a long time to revert

> to normal, not to worry. SO-- I started shaving a tiny bit off each pill,

> maybe 5 mg.

> Here are my values since I started doing that

>

> TSH 0.01

> Free T4: 19 (Range 10-20)

> Free T3: 5.7 (Range 2.4-5.0)

>

> They ( my Free T3 and FreeT4) have started creeping up a bit, or maybe it

> was a hyper time for me. I sure don't FEEL hyper, but I have started doing

> yoga and really watching my food intake so maybe those changes are affecting

> my numbers.

>

> I am so frustrated. My hair too, as others have mentioned, is falling out

> so much, it is hard to believe. Thanks for listening to my un-fine whine. I

> so want to get off the PTU but I will be smart and hang in. RAI is not an

> option for me, but if this goes on for say 2 more years, I wonder about

> surgery, now. ( I can't believe I am even saying this). Probably not, I will

> hang in and hope for a breakthrough. I don't want to do anything

> irreversible at this point. ANybody in my leaky boat or with any input? Good

> info is so hard to come by, except here.

>

> best to all,

>

> Maribeth

>

> _________________________________________________________________

> Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp

>

>

>

[Guest guest]

Hello!

If your doctor only gave you those 2 options, it's time to find another

doctor. That's pretty outrageous that he didn't discuss anti-thyroid drugs

(ATDs) with you at all.

I had RAI at the age of 24 and have regretted it ever since. My husband is

a physician and also greatly regrets that he thought it was the best choice

for me at the time. He often diagnoses Graves' in his patients and now

advises them not to rush into any permanent treatment. He tells them that

many doctors will try to rush them into RAI but they need to research it

well before they make a choice. He then tells them about all the problems

I've had post-RAI and the trouble I had getting help despite being married

to a physician.

I was told that I had to go off of ATDs after 6 mos. (not true-I had no bad

side effects), I was told that I could die if I didn't have RAI and I was

told I'd have close to normal or slightly hypo thyroid function after RAI.

That wasn't true either. I have no thyroid function of my own left at all

and haven't for years.

I have multiple problems but the one I'm struggling with right now is

infertility. Infertility does not run in my family and many of the women

have gotten pregnant into their 40s.

Anyhow, you might try searching the archives on this subject. We just had

quite a discussion about it recently since one of our members is considering

RAI.

Take care,

> Hello, I need help. I have graves disease and am 27 years old. My

doctor just gave me the option of RAI or surgery. He prefers RAI. I have

heard some bad stuff about this little pill and would prefer some input. He

also told me that with either option I would have to wait a year to try and

get pregnant. Please help I am desperate.

[Guest guest]

Hello Mrs. Snyder and welcome,

You have gotten some excellent answers here and I would just like to chip in

one thing. There are excellent support groups and web-sites on Thyroid and

Graves and I would like you to look first at these two pages. ithyroid.com is a

site run by with great info. This first page from his site is an article

written by Elane on Graves Treatment Options.

http://www.ithyroid.com/graves_treatments.htm

The second is RAI or not RAI? and is quite moving.

http://www.ithyroid.com/rai_or_not_rai.htm

At your age, RAI should not even be consided as an initial treatment. I agree

with the person that said to get a new doctor. There is a great site for that by

Shomon.

http://thyroid.about.com/cs/doctors/

Do not rush or be pushed by " doctor knows best. " In this case, it is not true.

My new values; input needed

After a year on 50x3 PTU , my free t3 and free t4 were in range and my TSH

hadn't budged, and my doctor said sometimes TSH takes a long time to revert

to normal, not to worry. SO-- I started shaving a tiny bit off each pill,

maybe 5 mg.

Here are my values since I started doing that

TSH 0.01

Free T4: 19 (Range 10-20)

Free T3: 5.7 (Range 2.4-5.0)

They ( my Free T3 and FreeT4) have started creeping up a bit, or maybe it

was a hyper time for me. I sure don't FEEL hyper, but I have started doing

yoga and really watching my food intake so maybe those changes are affecting

my numbers.

I am so frustrated. My hair too, as others have mentioned, is falling out

so much, it is hard to believe. Thanks for listening to my un-fine whine. I

so want to get off the PTU but I will be smart and hang in. RAI is not an

option for me, but if this goes on for say 2 more years, I wonder about

surgery, now. ( I can't believe I am even saying this). Probably not, I will

hang in and hope for a breakthrough. I don't want to do anything

irreversible at this point. ANybody in my leaky boat or with any input? Good

info is so hard to come by, except here.

best to all,

Maribeth

_________________________________________________________________

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[Guest guest]

Hi Mrs. S.,

Welcome to the group. I just want to tell you that my first endo only gave

me the same two choices that you have been given, (you aren't my any chance

seeing a woman Endo in Erie Pa are you?)...anyhow, she bald face LIED to

me. After I had RAI (because she said how *safe* it was, another LIE!) I

went forward with it because I had been raised to believe in my doctor,

trust my doctor, they know what they are talking about (not all the time

they don't!)...4 years of being hypo because of RAI and not proper

treatment, I found my first Graves board, then found this one, after sharing

my numbers at the time of diagnosis with others and seeing their numbers, by

no means was RAI or Surgery warranted for me! I probably would have had a

great chance at remission if I had a competent endo in the beginning.

Now I have a great endo, I have to drive 2 hours to see her, but she is

worth it, and we continue to work towards finding a proper dose of Armour so

I can feel good again. I wish I had found her in the beginning, how

different my life would be today.

At 27 (I am 49 today be very very careful about going the RAI route,

especially if you want children. Debbie R, I, Donna have all

been on ATD's (Debbie R. has been in remission for 14 months now) but they

all gave birth on ATD therapy...well except Donna, she is due in November

Caroline ( in the archives) joined this group late last

summer or early fall researching her options with GD, because age was a

factor with wanting another child she opted for surgery and was pregnant a

month after her surgery, she just gave birth to Dylan on August 4th, a

beautiful little man

Does your endo have you on ATD's now? If now, ask why...then search for

another endo please...you can go to

http://thyroid.about.com/library/weekly/bldoc1.htm

click on your state and start reading...all docs here are recommended by

patients who like them, this is where I found my current endo so I thank

God, and Shomon for this site!

ATD's will buy you all the time you need to research GD and all of the

current treatments... B (in the archives) chose an alternative treatment

and has done well with it...she has both GD and Hashimoto's Disease. Also

on ATD's your mind will begin to function much better so that as you read

things will actually begin to make sense to you again and you can make a

treatment decision and actually understand what you are doing.

Take your time, keep reading and keep asking questions. We are all in this

together! When were you diagnosed?

Take care,

Jody

_________________________________________________________________

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[Guest guest]

Hi again Mrs. S.,

One more thing to consider before even saying RAI is that those who have RAI

have a greater chance of having the GO (Graves Ophthalmology) or TED/GED all

are the eye disease (which is the PITS!)or of having the eye disease become

severe requiring surgeries.

Elaine's book is called Graves Disease A Practical Guide and is an excellent

book for the newly diagnosed, the warriors and of course all of the endos

out there treating GD!

Another thing to touch on, Terry already did, but I'm going to take it one

step further...get hard copies of ALL of your blood work from the very

beginning and a notebook to keep them in. Have you had the antibodies

testing done to confirm GD or are they going by your TSH and maybe an

uptake? All things I never knew to ask and wish I had of.

Take care,

Jody

_________________________________________________________________

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[Guest guest]

Thanks everyone for the advice. I was started on PTU but I was unable to take

that. The PTU dropped my WBC's down to 2.9. He has put me on tapazole right

now to try until I make a decision. I am also on propanolol.

Re: RAI or Surgery?

Hello!

If your doctor only gave you those 2 options, it's time to find another

doctor. That's pretty outrageous that he didn't discuss anti-thyroid drugs

(ATDs) with you at all.

I had RAI at the age of 24 and have regretted it ever since. My husband is

a physician and also greatly regrets that he thought it was the best choice

for me at the time. He often diagnoses Graves' in his patients and now

advises them not to rush into any permanent treatment. He tells them that

many doctors will try to rush them into RAI but they need to research it

well before they make a choice. He then tells them about all the problems

I've had post-RAI and the trouble I had getting help despite being married

to a physician.

I was told that I had to go off of ATDs after 6 mos. (not true-I had no bad

side effects), I was told that I could die if I didn't have RAI and I was

told I'd have close to normal or slightly hypo thyroid function after RAI.

That wasn't true either. I have no thyroid function of my own left at all

and haven't for years.

I have multiple problems but the one I'm struggling with right now is

infertility. Infertility does not run in my family and many of the women

have gotten pregnant into their 40s.

Anyhow, you might try searching the archives on this subject. We just had

quite a discussion about it recently since one of our members is considering

RAI.

Take care,

> Hello, I need help. I have graves disease and am 27 years old. My

doctor just gave me the option of RAI or surgery. He prefers RAI. I have

heard some bad stuff about this little pill and would prefer some input. He

also told me that with either option I would have to wait a year to try and

get pregnant. Please help I am desperate.

[Guest guest]

Happy Birthday Jody. Nice to get the opportunity to hear from you even in these

circumstances.

Re: RAI or Surgery?

Hi Mrs. S.,

Welcome to the group. I just want to tell you that my first endo only gave

me the same two choices that you have been given, (you aren't my any chance

seeing a woman Endo in Erie Pa are you?)...anyhow, she bald face LIED to

me. After I had RAI (because she said how *safe* it was, another LIE!) I

went forward with it because I had been raised to believe in my doctor,

trust my doctor, they know what they are talking about (not all the time

they don't!)...4 years of being hypo because of RAI and not proper

treatment, I found my first Graves board, then found this one, after sharing

my numbers at the time of diagnosis with others and seeing their numbers, by

no means was RAI or Surgery warranted for me! I probably would have had a

great chance at remission if I had a competent endo in the beginning.

Now I have a great endo, I have to drive 2 hours to see her, but she is

worth it, and we continue to work towards finding a proper dose of Armour so

I can feel good again. I wish I had found her in the beginning, how

different my life would be today.

At 27 (I am 49 today be very very careful about going the RAI route,

especially if you want children. Debbie R, I, Donna have all

been on ATD's (Debbie R. has been in remission for 14 months now) but they

all gave birth on ATD therapy...well except Donna, she is due in November

Caroline ( in the archives) joined this group late last

summer or early fall researching her options with GD, because age was a

factor with wanting another child she opted for surgery and was pregnant a

month after her surgery, she just gave birth to Dylan on August 4th, a

beautiful little man

Does your endo have you on ATD's now? If now, ask why...then search for

another endo please...you can go to

http://thyroid.about.com/library/weekly/bldoc1.htm

click on your state and start reading...all docs here are recommended by

patients who like them, this is where I found my current endo so I thank

God, and Shomon for this site!

ATD's will buy you all the time you need to research GD and all of the

current treatments... B (in the archives) chose an alternative treatment

and has done well with it...she has both GD and Hashimoto's Disease. Also

on ATD's your mind will begin to function much better so that as you read

things will actually begin to make sense to you again and you can make a

treatment decision and actually understand what you are doing.

Take your time, keep reading and keep asking questions. We are all in this

together! When were you diagnosed?

Take care,

Jody

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp

[Guest guest]

Hi Maribeth,

Why doesn't he use anti-thyroid drugs? If he's not experienced with their

use, try another doctor. If used properly, most patients can achieve

remission with these meds.

[Guest guest]

Hi Mrs. S.

And thank you for the HB It was, hubby took me shopping and never said

the word no all day <g>

How are you doing on the Tap and how long have you been on it? Usually from

all that I have read/learned along the way, most people who can not tolerate

one will *usually* do good on the other, so you still have time to decide

what you want to do and how to do it. How long ago were you diagnosed?

Take care,

Jody

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp

[Guest guest]

I just started the tapazole today. The doctors diagnosed me a couple of months

ago. Thanks for your input. I just read that RAI is contradicted in women of

childbearing years. The endo. tried to tell me that you can't believe anything

that comes from the internet.

Re: RAI or Surgery?

Hi Mrs. S.

And thank you for the HB It was, hubby took me shopping and never said

the word no all day <g>

How are you doing on the Tap and how long have you been on it? Usually from

all that I have read/learned along the way, most people who can not tolerate

one will *usually* do good on the other, so you still have time to decide

what you want to do and how to do it. How long ago were you diagnosed?

Take care,

Jody

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp

[Guest guest]

So glad you found this group! I think we were all give the same line about

RAI. In case no one has mentioned it yet, studies show that the remission

rate for TAP or PTU increases with the length of time you are on it, so

don't let the doctor tell you that you can only try it for a certain amount

of time (my doctor said 1 year). Many here are now in remission or on very

very low maintenance dosages, and I bet all would tell you that they are

glad they opted for medication instead of RAI. I know that I am, and I've

been dealing with this for over 2 years.

Take very good care of yourself right now, and good luck!

At 05:27 PM 09/29/2001 -0400, you wrote:

>I just started the tapazole today.

[Guest guest]

There are those of us who will try to tell you that you can't trust anything

that comes from the endo! Bottom line is do all the research, which you are!

Terry

>

> Reply-To: graves_support

> Date: Sat, 29 Sep 2001 17:27:04 -0400

> To: <graves_support >

> Subject: Re: RAI or Surgery?

>

> I just started the tapazole today. The doctors diagnosed me a couple of

> months ago. Thanks for your input. I just read that RAI is contradicted in

> women of childbearing years. The endo. tried to tell me that you can't

> believe anything that comes from the internet.

> Re: RAI or Surgery?

>

>

> Hi Mrs. S.

> And thank you for the HB It was, hubby took me shopping and never said

> the word no all day <g>

>

> How are you doing on the Tap and how long have you been on it? Usually from

> all that I have read/learned along the way, most people who can not tolerate

> one will *usually* do good on the other, so you still have time to decide

> what you want to do and how to do it. How long ago were you diagnosed?

>

> Take care,

> Jody

>

> _________________________________________________________________

> Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp

>

>

>

[Guest guest]

Hi Mrs Snyder

Welcome to group. I have read the posts over the last 2 days from you and the

answers from others in the group. I can't add much except to enphasize take your

time and keep researching. As Jody said I made a decision last September based

on my circumstances. I took time and considered carefully my options. For me it

has turned out better

than I'd hoped for - so far. You can look up in the archives my posts discussing

this under .

Take care

Caroline

" Mrs. Snyder " wrote:

> Hello, I need help. I have graves disease and am 27 years old. My doctor

just gave me the option of RAI or surgery. He prefers RAI. I have heard some

bad stuff about this little pill and would prefer some input. He also told me

that with either option I would have to wait a year to try and get pregnant.

Please help I am desperate.

> ----- OriginMessage al -----

> From: M chik

> To: graves_support

> Sent: Friday, September 28, 2001 11:46

> Subject: My new values; input needed

>

> After a year on 50x3 PTU , my free t3 and free t4 were in range and my TSH

> hadn't budged, and my doctor said sometimes TSH takes a long time to revert

> to normal, not to worry. SO-- I started shaving a tiny bit off each pill,

> maybe 5 mg.

> Here are my values since I started doing that

>

> TSH 0.01

> Free T4: 19 (Range 10-20)

> Free T3: 5.7 (Range 2.4-5.0)

>

> They ( my Free T3 and FreeT4) have started creeping up a bit, or maybe it

> was a hyper time for me. I sure don't FEEL hyper, but I have started doing

> yoga and really watching my food intake so maybe those changes are affecting

> my numbers.

>

> I am so frustrated. My hair too, as others have mentioned, is falling out

> so much, it is hard to believe. Thanks for listening to my un-fine whine. I

> so want to get off the PTU but I will be smart and hang in. RAI is not an

> option for me, but if this goes on for say 2 more years, I wonder about

> surgery, now. ( I can't believe I am even saying this). Probably not, I will

> hang in and hope for a breakthrough. I don't want to do anything

> irreversible at this point. ANybody in my leaky boat or with any input? Good

> info is so hard to come by, except here.

>

> best to all,

>

> Maribeth

>

> _________________________________________________________________

> Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp

>

>

[Guest guest]

Hi Mrs.

>>>>The endo. tried to tell me that you can't believe anything

that comes from the internet<<<<

Yeah, my former primary tried to warn me of all the *evils* on the

internet...hmmmmmm does that mean all the medical sites on here are evil and

full of lies too? Or just the support groups that exists for so many

different things. I think that is more their problem because when people

who suffer from the same thing get together and start comparing notes, the

begin demanding questions from physicians who just don't have them, don't

want to have to find them, don't want to be questioned because they have so

many years of medical school and training they *can't* be questioned, or

they don't like it when some of us may find answers that explain exactly

what is going on with their bodies when they couldn't find the answer. I

like a dr. more who is willing to admit they are only human as we all are,

that they may not have all the answers but don't mind continuing education,

even from patience or the *evil* internet. If a doc won't be questioned and

won't work with me and me with him/her...then they aren't a doc I will stay

with.

Keep reading, the archives is full of info, including url's for 'medical'

sites that may answer your questions, give you some info to print up and

share with your doc...who knows, maybe she/he will learn something new or

begin exploring new paths into GD.

Take care,

Jody

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp

[Guest guest]

Hi Mrs. S.,

I was started on TAP but when I became pregnant was put on the PTU which is

known to be safer when you are pregnant. After 5.5 yrs. on ATDs my thyroid

levels are normal. So for 14 months I've been off ATDs. You can retain

remission with them

More than once I was talked to about RAI but refused to do it. After

reading the paper and what you had to do afterwards it made me think it

wasn't for me. Also I have the TED which can become worse after RAI. They

told me you can take steriods to help with it or RAI.

You are right to learn all you can. I've been in this group for 19 months

the rest of the time I was on my own. I knew nothing, but for some reason I

didn't like the thought of RAI, maybe because of watching what happened to

my grandmother and uncle when they had cancer. I know it isn't the same but

it prevented me from doing it. When my last endo brought it up before he

knew my levels were in the normal range I never went back.

My son was born at age 40 with no complications after starting on 600 mg. of

PTU when I was pregnant. His apgar score was 9.

Debbie R.

[Guest guest]

Hi Louise,

Don't rush into a third radioiodine treatment on the basis of lab tests. For

many of us it can take years for the TSH to start rising, and in some cases

it doesn't rise. It's a pituitary hormone that changes in relation to your

thyroid hormone levels.

Your thyroid hormone levels are the ones that are important.

Also, it can take many years for the full effects of radioiodine to show up.

That's why researchers say that your chances of becoming hypothyroid from

radioiodine increase with each year up to 10 years or so.

If you're indeed still hypothyroid, there are other choices besides

radioiodine.

While radioiodine can affect your genital organs, it's not reported to cause

infertility. However, it usually causes hypothyroidism and hypoT is more

associated with fertility problems than hyperthyroidism.

Please research the subject before opting for another radioiodine treatment.

Take care, Elaine

[Guest guest]

Hi,

I am only 22 and was diagnosed with GD four years ago, my docter did

give me a course of ATD for about two years but that didn't work so

he gave me the RadioIodie, the first dose didn't work so I had to

have a second dose, and the docters still don't think that has worked

although my thyroid levels are down my TSH is still showing that it

thinks I'm overactive.

I have had two doses of this RadioIodine and my docters never warned

me of any problems with getting pregnant in the future which although

isn't going to happen today I may kids to someday, he only warned me

of risks if I was pregnant at the time, and now they want to put me

for a third dose.

I know that GD can cause infertility but can the radioiodine as well?

I have to admit that my docters haven't told me very much about what

other problems GD causes.

Louise

> Hello!

>

> If your doctor only gave you those 2 options, it's time to find

another

> doctor. That's pretty outrageous that he didn't discuss anti-

thyroid drugs

> (ATDs) with you at all.

>

> I had RAI at the age of 24 and have regretted it ever since. My

husband is

> a physician and also greatly regrets that he thought it was the

best choice

> for me at the time. He often diagnoses Graves' in his patients and

now

> advises them not to rush into any permanent treatment. He tells

them that

> many doctors will try to rush them into RAI but they need to

research it

> well before they make a choice. He then tells them about all the

problems

> I've had post-RAI and the trouble I had getting help despite being

married

> to a physician.

>

> I was told that I had to go off of ATDs after 6 mos. (not true-I

had no bad

> side effects), I was told that I could die if I didn't have RAI

and I was

> told I'd have close to normal or slightly hypo thyroid function

after RAI.

> That wasn't true either. I have no thyroid function of my own left

at all

> and haven't for years.

>

> I have multiple problems but the one I'm struggling with right now

is

> infertility. Infertility does not run in my family and many of the

women

> have gotten pregnant into their 40s.

>

> Anyhow, you might try searching the archives on this subject. We

just had

> quite a discussion about it recently since one of our members is

considering

> RAI.

>

> Take care,

>

>

>

>

> > Hello, I need help. I have graves disease and am 27 years old.

My

> doctor just gave me the option of RAI or surgery. He prefers RAI.

I have

> heard some bad stuff about this little pill and would prefer some

input. He

> also told me that with either option I would have to wait a year to

try and

> get pregnant. Please help I am desperate.

[Guest guest]

Hi Mrs. Snyder-

That's true. You certainly can't believe everything that's on the internet.

But your doctor won't be able to tell you that about what's in medical

journals. For every article he can quote that supports RAI in childbearing

aged women, you'll be able to counterquote one that doesn't.

Ask him why they don't do RAI on childbearing women routinely anywhere else

but the U.S. He won't be able to answer you except in maybe a feeble

fashion.

As someone who's had RAI at a young age and has " unexplained " infertility

and has spent lots of time and money trying to determine why, there's no

satisfactory answer. My husband is a physician and I have a master's in

biology and we can't determine why exactly. However, thyroid hormone is

required to drive every cell in the human body. They make a mistake in how

much you need and it would make sense that it screws up everything.

I'm so sorry. I'm tired of these doctors saying that a young woman can take

a pill every day and be fine. That sure didn't happen with me, even under

optimal circumstances (11 years to figure it out), and it makes me wonder

how often that happens with others and no one cares to figure out what's

wrong.

Take care,

> I just started the tapazole today. The doctors diagnosed me a couple of

months ago. Thanks for your input. I just read that RAI is contradicted in

women of childbearing years. The endo. tried to tell me that you can't

believe anything that comes from the internet.

[Guest guest]

Dear mrs Snyder;I have had RAI done twice,about 6 years ago I have never gotten

within (normal) range.I got TED after the first time,my gp told me they should

of gave me styroids with the treatment and it would of kept me from getting the

eye disease,I dont really know. but I fought that for years and finally this

year had orbital decompression done.That was the only treatment Ive had since I

came down with this desiese that I would call sucessful.Now my new Endo is tring

to get me to do RAI AGAIN!!!! I totaly refuse to.I know my disease isnt under

control,but I cant see a third round of being nuked helping any.I have lost

every thing near and dear to me from this disease,my husband just left me 3 week

ago telling me hes just not strong enough to live the rest of his life with

someone whos moods are such a downer....so much for the better or worse vow.I

would think long and hard about doing RAI,if I were you.It dont always work.and

there are major side effects from it.I know of people who have had the surgery

and have done much better but they were hypo thyroid not hyper.At any rate if

they tell you you can get RAI and be normal,DONT belive it tell them to call me

Im living proof that it dont work that way,I wish you all the luck and hope your

Drs are better then mine.Cheryl

My new values; input needed

After a year on 50x3 PTU , my free t3 and free t4 were in range and my TSH

hadn't budged, and my doctor said sometimes TSH takes a long time to revert

to normal, not to worry. SO-- I started shaving a tiny bit off each pill,

maybe 5 mg.

Here are my values since I started doing that

TSH 0.01

Free T4: 19 (Range 10-20)

Free T3: 5.7 (Range 2.4-5.0)

They ( my Free T3 and FreeT4) have started creeping up a bit, or maybe it

was a hyper time for me. I sure don't FEEL hyper, but I have started doing

yoga and really watching my food intake so maybe those changes are affecting

my numbers.

I am so frustrated. My hair too, as others have mentioned, is falling out

so much, it is hard to believe. Thanks for listening to my un-fine whine. I

so want to get off the PTU but I will be smart and hang in. RAI is not an

option for me, but if this goes on for say 2 more years, I wonder about

surgery, now. ( I can't believe I am even saying this). Probably not, I will

hang in and hope for a breakthrough. I don't want to do anything

irreversible at this point. ANybody in my leaky boat or with any input? Good

info is so hard to come by, except here.

best to all,

Maribeth

_________________________________________________________________

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[Guest guest]

Hi Louise

Welcome to the group. I think you should be careful about having a third dose of

RAI. Although I haven't had RAI, I

know from others here that it can take years for the thyroid to stop dying as a

result of just one treatment. If

your thyroid levels are still high you can be on ATDs while the RAI continues to

do its job. You would have to have

regular blood tests and adjust the meds as necessary.

Given the problems people have after RAI (see the archives here and I know

others such as , Elaine & Jody have

already answered you), you should give it quite a bit of time and consideration

before going ahead with another

treatment.

If you stick around here you'll find out heaps about GD (as I have and continue

to everyday). It can be very

confusing when faced with having to make health related decisions such as you

(and all of us at one time or another)

have to. The Doctors don't tend to fully appreciate this process - it's not

happening to them or their bodies and

they don't have to live with the consequences for the rest of their life.

Take Care and all the best with your research.

Cheers

Caroline

Louise wrote:

> Hi,

>

> I am only 22 and was diagnosed with GD four years ago, my docter did

> give me a course of ATD for about two years but that didn't work so

> he gave me the RadioIodie, the first dose didn't work so I had to

> have a second dose, and the docters still don't think that has worked

> although my thyroid levels are down my TSH is still showing that it

> thinks I'm overactive.

>

> I have had two doses of this RadioIodine and my docters never warned

> me of any problems with getting pregnant in the future which although

> isn't going to happen today I may kids to someday, he only warned me

> of risks if I was pregnant at the time, and now they want to put me

> for a third dose.

>

> I know that GD can cause infertility but can the radioiodine as well?

> I have to admit that my docters haven't told me very much about what

> other problems GD causes.

>

> Louise

>

>

> > Hello!

> >

> > If your doctor only gave you those 2 options, it's time to find

> another

> > doctor. That's pretty outrageous that he didn't discuss anti-

> thyroid drugs

> > (ATDs) with you at all.

> >

> > I had RAI at the age of 24 and have regretted it ever since. My

> husband is

> > a physician and also greatly regrets that he thought it was the

> best choice

> > for me at the time. He often diagnoses Graves' in his patients and

> now

> > advises them not to rush into any permanent treatment. He tells

> them that

> > many doctors will try to rush them into RAI but they need to

> research it

> > well before they make a choice. He then tells them about all the

> problems

> > I've had post-RAI and the trouble I had getting help despite being

> married

> > to a physician.

> >

> > I was told that I had to go off of ATDs after 6 mos. (not true-I

> had no bad

> > side effects), I was told that I could die if I didn't have RAI

> and I was

> > told I'd have close to normal or slightly hypo thyroid function

> after RAI.

> > That wasn't true either. I have no thyroid function of my own left

> at all

> > and haven't for years.

> >

> > I have multiple problems but the one I'm struggling with right now

> is

> > infertility. Infertility does not run in my family and many of the

> women

> > have gotten pregnant into their 40s.

> >

> > Anyhow, you might try searching the archives on this subject. We

> just had

> > quite a discussion about it recently since one of our members is

> considering

> > RAI.

> >

> > Take care,

> >

> >

> >

> >

> > > Hello, I need help. I have graves disease and am 27 years old.

> My

> > doctor just gave me the option of RAI or surgery. He prefers RAI.

> I have

> > heard some bad stuff about this little pill and would prefer some

> input. He

> > also told me that with either option I would have to wait a year to

> try and

> > get pregnant. Please help I am desperate.

>

>

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

> 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 or moderators. We have no input as to what ads are attached to

emails.

>

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

------

>

>

[Guest guest]

I don't think I want the RAI. To start with I am on only 10mg of tapazole per

day. He is trying me on a low dosage since I had a bad reaction to the PTU.

The Endo. wants to see me in a couple of weeks for my decision, but I think I

will visit another Endo. ASAP to see what he/she has to say. These doctors act

so uninterested when they talk with you over the subject. Just a job right.

Well, unfortunately we have to live with this awful disease. I can't even work

right now due to the shakes and always being so hot. My job is also stressful.

I guess things have to get better.

My new values; input needed

After a year on 50x3 PTU , my free t3 and free t4 were in range and my TSH

hadn't budged, and my doctor said sometimes TSH takes a long time to

revert

to normal, not to worry. SO-- I started shaving a tiny bit off each pill,

maybe 5 mg.

Here are my values since I started doing that

TSH 0.01

Free T4: 19 (Range 10-20)

Free T3: 5.7 (Range 2.4-5.0)

They ( my Free T3 and FreeT4) have started creeping up a bit, or maybe it

was a hyper time for me. I sure don't FEEL hyper, but I have started doing

yoga and really watching my food intake so maybe those changes are

affecting

my numbers.

I am so frustrated. My hair too, as others have mentioned, is falling out

so much, it is hard to believe. Thanks for listening to my un-fine whine.

I

so want to get off the PTU but I will be smart and hang in. RAI is not an

option for me, but if this goes on for say 2 more years, I wonder about

surgery, now. ( I can't believe I am even saying this). Probably not, I

will

hang in and hope for a breakthrough. I don't want to do anything

irreversible at this point. ANybody in my leaky boat or with any input?

Good

info is so hard to come by, except here.

best to all,

Maribeth

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp

[Guest guest]

Sorry to hear about your husband. We are here for you if you need to vent

Cheryl.

My new values; input needed

After a year on 50x3 PTU , my free t3 and free t4 were in range and my

TSH

hadn't budged, and my doctor said sometimes TSH takes a long time to

revert

to normal, not to worry. SO-- I started shaving a tiny bit off each

pill,

maybe 5 mg.

Here are my values since I started doing that

TSH 0.01

Free T4: 19 (Range 10-20)

Free T3: 5.7 (Range 2.4-5.0)

They ( my Free T3 and FreeT4) have started creeping up a bit, or maybe

it

was a hyper time for me. I sure don't FEEL hyper, but I have started

doing

yoga and really watching my food intake so maybe those changes are

affecting

my numbers.

I am so frustrated. My hair too, as others have mentioned, is falling

out

so much, it is hard to believe. Thanks for listening to my un-fine

whine. I

so want to get off the PTU but I will be smart and hang in. RAI is not

an

option for me, but if this goes on for say 2 more years, I wonder about

surgery, now. ( I can't believe I am even saying this). Probably not, I

will

hang in and hope for a breakthrough. I don't want to do anything

irreversible at this point. ANybody in my leaky boat or with any input?

Good

info is so hard to come by, except here.

best to all,

Maribeth

_________________________________________________________________

Get your FREE download of MSN Explorer at

http://explorer.msn.com/intl.asp

[Guest guest]

Sorry to hear about your husband. My boyfriend doesn't like my moods but he sort

of knows to let me be for a day or two (especially a couple of days before my

menstrual cycle begins). You are thinking that being married is different. I

understand but sometimes maybe you just need some breathing room. Good Luck!

I was diagnosed with GD in early August 2001. The only symptom that I had was

fatigue. I thought it was work, school (graduate school) and everything else

that I do (boyfriend and daughter).

I opted for the RAI because my Endo said that ATD just suppresses thyroid and if

I discontinue the meds, hyper can re-occur. Of course my uptake was 46%. Maybe

my thyroid needed to be treated right away.

I am still waiting for my TSH to be in the normal range. I went on 9/10 and 2

out of the 3 (TSH, T3, Free T4) were still out of range. I go back on 10/18.

" Cheryl " wrote:

>Dear mrs Snyder;I have had RAI done twice,about 6 years ago I have never gotten

within (normal) range.I got TED after the first time,my gp told me they should

of gave me styroids with the treatment and it would of kept me from getting the

eye disease,I dont really know. but I fought that for years and finally this

year had orbital decompression done.That was the only treatment Ive had since I

came down with this desiese that I would call sucessful.Now my new Endo is tring

to get me to do RAI AGAIN!!!! I totaly refuse to.I know my disease isnt under

control,but I cant see a third round of being nuked helping any.I have lost

every thing near and dear to me from this disease,my husband just left me 3 week

ago telling me hes just not strong enough to live the rest of his life with

someone whos moods are such a downer....so much for the better or worse vow.I

would think long and hard about doing RAI,if I were you.It dont always work.and

there are major side effects from it.I know of people who have had the surgery

and have done much better but they were hypo thyroid not hyper.At any rate if

they tell you you can get RAI and be normal,DONT belive it tell them to call me

Im living proof that it dont work that way,I wish you all the luck and hope your

Drs are better then mine.Cheryl

> My new values; input needed

>

>

> After a year on 50x3 PTU , my free t3 and free t4 were in range and my TSH

> hadn't budged, and my doctor said sometimes TSH takes a long time to revert

> to normal, not to worry. SO-- I started shaving a tiny bit off each pill,

> maybe 5 mg.

> Here are my values since I started doing that

>

> TSH 0.01

> Free T4: 19 (Range 10-20)

> Free T3: 5.7 (Range 2.4-5.0)

>

> They ( my Free T3 and FreeT4) have started creeping up a bit, or maybe it

> was a hyper time for me. I sure don't FEEL hyper, but I have started doing

> yoga and really watching my food intake so maybe those changes are

affecting

> my numbers.

>

> I am so frustrated. My hair too, as others have mentioned, is falling out

> so much, it is hard to believe. Thanks for listening to my un-fine whine. I

> so want to get off the PTU but I will be smart and hang in. RAI is not an

> option for me, but if this goes on for say 2 more years, I wonder about

> surgery, now. ( I can't believe I am even saying this). Probably not, I

will

> hang in and hope for a breakthrough. I don't want to do anything

> irreversible at this point. ANybody in my leaky boat or with any input?

Good

> info is so hard to come by, except here.

>

> best to all,

>

> Maribeth

>

> _________________________________________________________________

> Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp

>

>

>

[Guest guest]

Did you get eye involvement after the RAI or did they also give you steroids?

My new values; input needed

>

>

> After a year on 50x3 PTU , my free t3 and free t4 were in range and my

TSH

> hadn't budged, and my doctor said sometimes TSH takes a long time to

revert

> to normal, not to worry. SO-- I started shaving a tiny bit off each pill,

> maybe 5 mg.

> Here are my values since I started doing that

>

> TSH 0.01

> Free T4: 19 (Range 10-20)

> Free T3: 5.7 (Range 2.4-5.0)

>

> They ( my Free T3 and FreeT4) have started creeping up a bit, or maybe it

> was a hyper time for me. I sure don't FEEL hyper, but I have started

doing

> yoga and really watching my food intake so maybe those changes are

affecting

> my numbers.

>

> I am so frustrated. My hair too, as others have mentioned, is falling

out

> so much, it is hard to believe. Thanks for listening to my un-fine whine.

I

> so want to get off the PTU but I will be smart and hang in. RAI is not an

> option for me, but if this goes on for say 2 more years, I wonder about

> surgery, now. ( I can't believe I am even saying this). Probably not, I

will

> hang in and hope for a breakthrough. I don't want to do anything

> irreversible at this point. ANybody in my leaky boat or with any input?

Good

> info is so hard to come by, except here.

>

> best to all,

>

> Maribeth

>

> _________________________________________________________________

> Get your FREE download of MSN Explorer at

http://explorer.msn.com/intl.asp

>

>

>

[Guest guest]

Hello Mrs. Snyder,

I think you are making a wise decision considering everything. Do not get

discouraged if you do not see fast results or if your endo tries to tell you the

treatment is not working after a few weeks. Keep in mind the thyroid hormone

stored in the thyroid must be used up before results will occur. This will take

several weeks. Secondly, 10mg of tapazole is a relatively low dose for starting

treatment. The usual dosage is 20 to 30mg to start with adjustments made after 4

to 12 weeks. I am also on 10mg of tapazole as a starting dosage. My levels had

not come into range after 8 weeks and if they are not down after 12 weeks, the

endo is going to increase dosage. The doctor would rather ablate, but will go

along with tapazole long term at a level under 10mg. That level being what I

settle in at after the hormone levels are under control. Keep the faith.

My new values; input needed

After a year on 50x3 PTU , my free t3 and free t4 were in range and my

TSH

hadn't budged, and my doctor said sometimes TSH takes a long time to

revert

to normal, not to worry. SO-- I started shaving a tiny bit off each

pill,

maybe 5 mg.

Here are my values since I started doing that

TSH 0.01

Free T4: 19 (Range 10-20)

Free T3: 5.7 (Range 2.4-5.0)

They ( my Free T3 and FreeT4) have started creeping up a bit, or maybe

it

was a hyper time for me. I sure don't FEEL hyper, but I have started

doing

yoga and really watching my food intake so maybe those changes are

affecting

my numbers.

I am so frustrated. My hair too, as others have mentioned, is falling

out

so much, it is hard to believe. Thanks for listening to my un-fine

whine. I

so want to get off the PTU but I will be smart and hang in. RAI is not

an

option for me, but if this goes on for say 2 more years, I wonder about

surgery, now. ( I can't believe I am even saying this). Probably not, I

will

hang in and hope for a breakthrough. I don't want to do anything

irreversible at this point. ANybody in my leaky boat or with any input?

Good

info is so hard to come by, except here.

best to all,

Maribeth

_________________________________________________________________

Get your FREE download of MSN Explorer at

http://explorer.msn.com/intl.asp