Re: A suggestion regarding the current discussion on RAI...

[Guest guest]

That was very well stated. This is all very confusing for us new ones

Re: Re: a very useful link to another support

group- Re: al...

Hi ,

Although it's been mentioned here that the majority of people do fine with

RAI, and 5 years ago I may have even said this, there are no studies that

back

this statement when it comes to long-term patients. The few studies

pertaining

to the wellbeing, general health, and mortality rates of patients treated

for

hyperthyroidism do not support this view.

I think the majority of patients treated with RAI may feel fine for the

first

year or so, but studies show that hypothyroidism becomes more severe about 6

years after RAI and for most people, thyroid antibodies persist for at least

10 years. The risk of developing GO, acropachy and pretibial myxedema

remains

for at least 30 years after RAI. And the elevation in thyroid antibody

titers

causes the fluctuating symptoms that we complain about. Often, patients do

not

realize that symptoms such as depression, hearing loss or joint pain are

related to these fluctuating levels until they begin researching their

condition or

other problems related to autoimmunity emerge.

As for the comment someone made that this discussion board wasn't

scientific,

I don't think it was ever intended to be. The board does offer educational

support and it offers concrete information about the interpretation of

laboratory results. But when scientists worldwide can't even agree on the

optimal

treatment for GD or the nature of autoimmunity, a scientific discussion

board would

still be riddled with differing opinions. Best to all, Elaine

[Guest guest]

Dear Laurie,

As in any support group you will find that people participate based on

their own personal experiences. There are members here who have opted

for RAI, had the treatment and then never felt good again. They come

here for support too, but they also tell a side of RAI that no

endocrinologist will ever share with you. Endos will not tell you that

after RAI you may crash into a hypo hell that is hard to escape from.

They also gloss over the possible worsening or development of TED after

RAI. There are some people who do great after RAI, even for years

afterwards, before they start to feel really bad. I have watched my MIL

struggle with numerous health issues, all issues that developed after

RAI treatment.

But Laurie please don't think for one moment that anyone here does not

support you! You my dear chose your course of treatment and I for one

hope that you will be one of the ones who is fine and healthy and happy

for many years to come! RAI is still not a treatment option for me and

it never will be. But that is my choice. And as I said in another post,

many patients are mismanaged on ATDs and told by their trusted doctors

that they simply are not going to make any progress on medications and

RAI is their only option. My own brother in law had this happen to him

and it's only because of my input that he hasn't had RAI. Had he

listened to his doctor only he too would have chosen RAI as his

treatment.

Laurie, I really am happy that RAI was a good choice for you. I want to

hear how good you're doing! I must apologize that I don't remember the

details of why the meds did not work for you. How are you feeling now?

How long has it been since you had RAI? Are you on replacement hormone

yet? Please share with us how your life is after RAI. If you feel that

most here are unfair about their judgment of RAI as a treatment option

then you, as someone who has had the procedure, must be active on this

list sharing what your personal experience has been. If your experience

is good then you must share that, if anything has been bad you must

share that too. A support group is nothing more than a sharing of

personal experience and opinion.

in MA USA

Graves since March 1997

Currently on 0 PTU tablets per day

Was euthyroid from 2000-2002

Will not undergo RAI

Re: A suggestion regarding the current

discussion on RAI...

I joined this group in the hopes to find friends to emotionally help me

through a very hard time in my life. ...

[Guest guest]

Dear ,

Just wanted to thank you for stating this in such a supportive, well-reasoned

and clear manner. I hope Laurie does do well with whatever she decides for

herself as well. God give us all the grace to make it thru whatever path we

trod.

" L. O'Hearn " wrote:

Dear Laurie,

As in any support group you will find that people participate based on

their own personal experiences. There are members here who have opted

for RAI, had the treatment and then never felt good again. They come

here for support too, but they also tell a side of RAI that no

endocrinologist will ever share with you. Endos will not tell you that

after RAI you may crash into a hypo hell that is hard to escape from.

They also gloss over the possible worsening or development of TED after

RAI. There are some people who do great after RAI, even for years

afterwards, before they start to feel really bad. I have watched my MIL

struggle with numerous health issues, all issues that developed after

RAI treatment.

But Laurie please don't think for one moment that anyone here does not

support you! You my dear chose your course of treatment and I for one

hope that you will be one of the ones who is fine and healthy and happy

for many years to come! RAI is still not a treatment option for me and

it never will be. But that is my choice. And as I said in another post,

many patients are mismanaged on ATDs and told by their trusted doctors

that they simply are not going to make any progress on medications and

RAI is their only option. My own brother in law had this happen to him

and it's only because of my input that he hasn't had RAI. Had he

listened to his doctor only he too would have chosen RAI as his

treatment.

Laurie, I really am happy that RAI was a good choice for you. I want to

hear how good you're doing! I must apologize that I don't remember the

details of why the meds did not work for you. How are you feeling now?

How long has it been since you had RAI? Are you on replacement hormone

yet? Please share with us how your life is after RAI. If you feel that

most here are unfair about their judgment of RAI as a treatment option

then you, as someone who has had the procedure, must be active on this

list sharing what your personal experience has been. If your experience

is good then you must share that, if anything has been bad you must

share that too. A support group is nothing more than a sharing of

personal experience and opinion.

in MA USA

Graves since March 1997

Currently on 0 PTU tablets per day

Was euthyroid from 2000-2002

Will not undergo RAI

Re: A suggestion regarding the current

discussion on RAI...

I joined this group in the hopes to find friends to emotionally help me

through a very hard time in my life. ...

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

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to replace expert medical care.

Please consult your doctor before changing or trying new treatments.

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

DISCLAIMER

Advertisments placed on this yahoo groups list do not have the endorsement of

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

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[Guest guest]

Hi Sheila,

Your suggestion to put our " voice in context " or let people know our point of

reference, or personal experiences, can make these discussions more

rewarding. A sentence or two of background info can offer so much insight. On

message

boards, without seeing the expression and body language of the speaker, we end

up with only half the message. Some background would help. Thanks for

explaining this so well, Elaine

[Guest guest]

Laurie

I am post RAI and I find this support group very educational and uplifting!

Unfortunately, Laurie, you joined at a time when someone on a mission also

joined. Someone who likes to go to message boards and start trouble. I am

sorry

that you feel you can't get the support you need here.

God bless,

[Guest guest]

I suspect those who have had RAI and appreciated having it

will have to create their own groups, because I feel certain

the majority here are anti-RAI as suggested and have banded

together to keep up on the current trends, studies and to

obtain support in their fight against the establishment. I

have dealt with three bouts (or the same one <smile>) of

Graves and appear to again be entering remission. When I

accepted orbital radiation for my eyes in an effort to solve

double vision and swelling problems associated with TED I

was asked by the hospital to sign waivers that they had

informed me I would probably be dealing with cataracts

within about ten years. The warning was pretty much on

point, had my eye exam the other day, the opthalmalogist

sees the beginnings, but I still test out at 20/20 with

correcting lenses, and I would consider the orbital

radiation again IF I were facing the same inability to focus

and read and dealing with double vision and swelling/staring

associated with TED. In the meantime, I will wait to see

how the promised and now arrived cataracts progress.

Since I already am facing some problems associated with a

very direct controlled orbital radiation, I have absolutely

no interest in RAI when the ATDs are working.

I am the only member of my family who is hyper. However, we

believe our mother probably was untreated hypo, and two of

my sisters are hypo and on synthroid.

I have said it before, and I will say it again, we three

siblings have compared notes, and I prefer being hyper to

being a slug. We all have to make our own decisions based

on our own lifestyle.

Elaine

Some cause happiness wherever they go; others, whenever they

go. -- Wilde

Hello The

On Friday, October 24, 2003, you wrote

TM> Laurie-

TM> Are there other groups you can join in order for you to feel supported?

TM> Not every place we go can we get what we need

[Guest guest]

Laurie,

You are, of course, entitled to your opinion as everyone else here is

entitled to theirs. Personally, I hope you stay around here and see that

this is a caring and compassionate group of people. We are supportive of

Graves patients, all of the Graves patients. But I know I, for one, will

continue to try and caution anyone new to this disease to not rush into

RAI. RAI is a permanent, no chance for changing your mind later

treatment that too many people are simply rushed into or deceived into.

I honestly just don't think anyone who is severely hyper-thyroid can

make a clear decision on anything, never mind a permanent, life altering

decision. Geez, when I was really hyper I couldn't decide what to wear

in the morning never mind make that huge a decision!

Again, I must apologize for not remembering your personal story. All I

know is you had trouble with ATDs if I remember correctly, something

about being even more hyper when medicated? I don't know how long you

were on meds, what labs were run, how often you were seen by your endo

or even what ATD you were on. Depending on the answers to those things I

may have agreed RAI was a good choice for you. But RAI was your choice

and now, dear Laurie, we will be here for any questions you have. There

are many here who have had RAI that can tell you the warning signs of

hypo or can comment of what you may go through now.

Laurie, you will find that can and will be supported here. But, I also

know that when someone new joins this group will, as it always has since

I've been here, continue to advocate ATDs first and foremost. And when

someone does choose RAI we will still be here to support them. Because

no matter what we've all been saddled with the same disease, it's what

brings us here and it's what keeps us here. ATDs may not be perfect,

then again no treatment for this disease is.

in MA USA

Graves since March 1997

Currently on 0 PTU tablets per day

Was euthyroid from 2000-2002

Will not undergo RAI

Re: A suggestion regarding the current

discussion on RAI...

Perhaps the name of this group should be changed from graves_support to

antiRAI_r_us.

[Guest guest]

To re-phrase a statement by Pam L.: RAI only addresses the symptoms; we

must help our immune systems to heal. RAI does not cure the cause, which is

a malfunctioning of the immune system problem. There is still a need for

vigilance and reducing/avoiding triggers for antibody production.

[Guest guest]

Have to agree with you here :

________________________________________________

Unfortunately, Laurie, you joined at a time when someone on a mission also

joined. Someone who likes to go to message boards and start trouble. I am

sorry

that you feel you can't get the support you need here.

________________________________________________

Every time we shake their cage, it becomes a matter of " where will they land

nobody knows " .

The newbies just need to sit tight and this too shall pass. It always does.

Amusing once you realize there is an agenda in selection of facts shared.

Quite creative.

Unfortunatly for new folks, any facts we present at this time only fuel the

fire and it takes longer to go out.

-Pam L-

[Guest guest]

Hello Laurie

On Friday, October 24, 2003, you wrote

LC> Perhaps the name of this group should be changed

LC> from graves_support to antiRAI_r_us.

<smile>.

No, you are right to shake the tree a bit. There are a lot

of us here who have been over-pressured and have probably

over-reacted.

My first endo in 1991 had no interest in RAI for me, never

suggested it. The second one thought it should be done but

accepted while disagreeing with my not wanting it. My

internist knows only one solution, RAI, and admits that.

That's why he isn't treating me. At one point I seriously

weakened and was ready to do it just to GET IT ALL OVER WITH

(patience is not our best trait when dealing with Graves)

and I was blessed with an HMO caretaker who asked me DO YOU

REALLY WANT TO DO THIS and I regained control and did

not.

The second endo, who formerly wanted RAI for me, now accepts

that RAI probably is not a good thing for someone who had

TED serious enough to require orbital radiation.

So you probably are outnumbered here and we may be more

vocal. Just hang in and talk more and get your point

across. There are people here who undoubtedly agree with

you or want to hear your side.

Elaine

The great thing in this world is not so much where you

stand, as in what direction you are moving. --Oliver Wendell

Holmes

[Guest guest]

> I am post RAI and I find this support group very educational and

uplifting!

> Unfortunately, Laurie, you joined at a time when someone on a

mission also

> joined. Someone who likes to go to message boards and start

trouble.

what does that mean??

liang