RE: Pam L - RAI and studies- Cindy

[Guest guest]

Pam - you wrote:

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

I am now at 1 3/4 years in remission.

Every doctor visit requires allowing the 'professional' tell me remission is

not possible for me. I am still being told RAI is now my only choice. :-(

What is wrong with THIS picture ? ;-)

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

And I swear, I can't figure it out - WHY are they still telling you RAI is

your only choice???? Granted I have only been skimming these posts and may

have missed something important, but if you are in remission, why are you

being told to do RAI???

I'm so confused...

Pam B (who is coming down with the flu, does that explain my confusion???)

PS. To the rest: Pam L is not crazy and she is right on about the idodine, MSG

and food additives - cutting them out made my life so much better too - it took

a major ah-ha moment for me to figure that one out too, but she was so right.

[Guest guest]

Hi Old Friend !

Yep... Still getting the same old song and dance.

That RAI tune is a Top 40 for sure.

Here is how it goes:

After all the experiences I have had on this oh, so long journey... The

instant I arrive in the parking lot of any doctors office, I feel my blood

pressure begin to rise.

Higher entering the building

higher entering the office

get weighed

go down the long hall to the little room, which has horrid bright florescent

lights that hurt my eyes, and shiny , hard floors and walls that reflect

this light and cause all sounds to be sharp and amplified.( this along is a

problem for me)

Often my wonderful physicians assistant and I have compared personal notes

on our mutual ADHD difficulties in the non ADD wolrd at that point. We have

known each other through several doctors. :-)

Now not only am I worked up over the possible bad outcomes of this

appointment, since his final decisions during, will possibly affect my

entire life for the next one to three months....but now I am upset over

something Lucy and I have shared.

I deeply value our talks, and gain so much from them, not talking about

important things during these few moments, in order to possibly keep my

blood pressure not as bad... is not a good option.

Now... with no waiting after I sit down, I am told to climb up on that high

table to get my BP taken. I always request we do this in the chair where I

am comfortable. She forgets between appointments sadly. But I hate the same

thing every single time... so now my BP jumps a tad more.

Move forward:

Doctor enters room.

Has read the note about the high blood pressure.

See me slightly squinting because of the light. This is not my most

attractive, happy appearance.

Also am at this point, looking to see what kind of a mood he is in today.

It does change. Human ya know.

All the medical professionals I have ever worked with do not believe a

patient with my history can achieve remission.

All of the current flawed studies tell them this is not possible.

NONE of them believe that iodine or MSG can have any bearing on thyroid

health.

So the doctor says " How are you today and how is your Graves' ? "

Many variations on the theme from here on out.

But he always insists on stating that Graves' will come back, that I am too

dumb to know this. ( that is my attitude at this point ... the 'dumb'

comment )

Trouble is... I have quizzed him on many basic facts on Graves', such as the

antibodies, TSH etc. and he does not seem to understand this as well ,as my

last years of almost daily research has taught me. So I can not believe he

is the expert, despite his other medical knowledge, and he is very good at

many other things.

It is not his fault either. All he has to go on is the same old studies we

see so often. New facts are appearing all the time.

THEN new studies will show that what we are now doing and learning about

Graves', NOW ... is so much better.

Back to the story....

The end comment on Graves' not possibly being in remission for good, is

ALWAYS concluded with the statement that :

" any patient with Graves' reappearing a second time is never going to beat

this. All the studies prove this fact. WHEN my Graves' comes back, *and it

will* , I have no choice but to take the RAI. "

I am so tired of this.

They said the same thing back when I first got sick.

AFTER a minimum of 16 years of hyper that was diagnosed as menopause....and

was NOT!

They said this at every appointment during active Graves'.

And now they say it at every appointment since.

How difficult would it be to consider the fact that a documented highly

intelligent woman, educated, home owner, small business owner, surrounded by

equally responsible intelligent friends, cat lover, tree hugger, and

genuinely nice person, might, just might, have a friggin' clue !

Wonder if my high BP in the doctors office might have a cause ?

;-)

-Pam L-

who had the entire afternoon off today and did absolutely nothing productive

at all !

What fun. :-) It has been a long hard week.

[Guest guest]

ah, now I understand and see it all clearly. It's the same reason I've been

putting off my annual exam with my MD... I know she's going to put me in the

most defensive of moods and will not believe anything I tell her anyway...

so why bother. Which makes me think (ah ha moment here!) I need a new doctor

(ND preferably) for those exams too... yes, I do. I will have to look into

that.

I swear one of the hardest things we have to deal with with this disease is

finding a doctor who will work WITH us. That should be the LEAST of our

problems.

Be well, and enjoy the rest of your weekend

Pam B.

-- Re: Pam L - RAI and studies- Cindy

Hi Old Friend !

Yep... Still getting the same old song and dance.

That RAI tune is a Top 40 for sure.

Here is how it goes:

After all the experiences I have had on this oh, so long journey... The

instant I arrive in the parking lot of any doctors office, I feel my blood

pressure begin to rise.

Higher entering the building

higher entering the office

get weighed

go down the long hall to the little room, which has horrid bright florescent

lights that hurt my eyes, and shiny , hard floors and walls that reflect

this light and cause all sounds to be sharp and amplified.( this along is a

problem for me)

Often my wonderful physicians assistant and I have compared personal notes

on our mutual ADHD difficulties in the non ADD wolrd at that point. We have

known each other through several doctors. :-)

Now not only am I worked up over the possible bad outcomes of this

appointment, since his final decisions during, will possibly affect my

entire life for the next one to three months....but now I am upset over

something Lucy and I have shared.

I deeply value our talks, and gain so much from them, not talking about

important things during these few moments, in order to possibly keep my

blood pressure not as bad... is not a good option.

Now... with no waiting after I sit down, I am told to climb up on that high

table to get my BP taken. I always request we do this in the chair where I

am comfortable. She forgets between appointments sadly. But I hate the same

thing every single time... so now my BP jumps a tad more.

Move forward:

Doctor enters room.

Has read the note about the high blood pressure.

See me slightly squinting because of the light. This is not my most

attractive, happy appearance.

Also am at this point, looking to see what kind of a mood he is in today.

It does change. Human ya know.

All the medical professionals I have ever worked with do not believe a

patient with my history can achieve remission.

All of the current flawed studies tell them this is not possible.

NONE of them believe that iodine or MSG can have any bearing on thyroid

health.

So the doctor says " How are you today and how is your Graves' ? "

Many variations on the theme from here on out.

But he always insists on stating that Graves' will come back, that I am too

dumb to know this. ( that is my attitude at this point ... the 'dumb'

comment )

Trouble is... I have quizzed him on many basic facts on Graves', such as the

antibodies, TSH etc. and he does not seem to understand this as well ,as my

last years of almost daily research has taught me. So I can not believe he

is the expert, despite his other medical knowledge, and he is very good at

many other things.

It is not his fault either. All he has to go on is the same old studies we

see so often. New facts are appearing all the time.

THEN new studies will show that what we are now doing and learning about

Graves', NOW ... is so much better.

Back to the story....

The end comment on Graves' not possibly being in remission for good, is

ALWAYS concluded with the statement that :

" any patient with Graves' reappearing a second time is never going to beat

this. All the studies prove this fact. WHEN my Graves' comes back, *and it

will* , I have no choice but to take the RAI. "

I am so tired of this.

They said the same thing back when I first got sick.

AFTER a minimum of 16 years of hyper that was diagnosed as menopause....and

was NOT!

They said this at every appointment during active Graves'.

And now they say it at every appointment since.

How difficult would it be to consider the fact that a documented highly

intelligent woman, educated, home owner, small business owner, surrounded by

equally responsible intelligent friends, cat lover, tree hugger, and

genuinely nice person, might, just might, have a friggin' clue !

Wonder if my high BP in the doctors office might have a cause ?

;-)

-Pam L-

who had the entire afternoon off today and did absolutely nothing productive

at all !

What fun. :-) It has been a long hard week.

[Guest guest]

Pam,

They told me that no one with severe Behcet's Disease had been documented to

live more than ten years after the diagnosis.

Until me....

Diagnosed 21 years ago. First symptoms 3 years before that. Survived two

near-death experiences, toxic mega-colon and many, many flare-ups. Been in

remission for 12 years.

Raised 5 children. Went on to get two master's degrees.

There has to be a first time and a first person.

Eventually they will ask you what you did to get well.

Sheila

Re: Pam L - RAI and studies- Cindy

Hi Old Friend !

Yep... Still getting the same old song and dance.

That RAI tune is a Top 40 for sure.

Here is how it goes:

After all the experiences I have had on this oh, so long journey... The

instant I arrive in the parking lot of any doctors office, I feel my blood

pressure begin to rise.

Higher entering the building

higher entering the office

get weighed

go down the long hall to the little room, which has horrid bright florescent

lights that hurt my eyes, and shiny , hard floors and walls that reflect

this light and cause all sounds to be sharp and amplified.( this along is a

problem for me)

Often my wonderful physicians assistant and I have compared personal notes

on our mutual ADHD difficulties in the non ADD wolrd at that point. We have

known each other through several doctors. :-)

Now not only am I worked up over the possible bad outcomes of this

appointment, since his final decisions during, will possibly affect my

entire life for the next one to three months....but now I am upset over

something Lucy and I have shared.

I deeply value our talks, and gain so much from them, not talking about

important things during these few moments, in order to possibly keep my

blood pressure not as bad... is not a good option.

Now... with no waiting after I sit down, I am told to climb up on that high

table to get my BP taken. I always request we do this in the chair where I

am comfortable. She forgets between appointments sadly. But I hate the same

thing every single time... so now my BP jumps a tad more.

Move forward:

Doctor enters room.

Has read the note about the high blood pressure.

See me slightly squinting because of the light. This is not my most

attractive, happy appearance.

Also am at this point, looking to see what kind of a mood he is in today.

It does change. Human ya know.

All the medical professionals I have ever worked with do not believe a

patient with my history can achieve remission.

All of the current flawed studies tell them this is not possible.

NONE of them believe that iodine or MSG can have any bearing on thyroid

health.

So the doctor says " How are you today and how is your Graves' ? "

Many variations on the theme from here on out.

But he always insists on stating that Graves' will come back, that I am too

dumb to know this. ( that is my attitude at this point ... the 'dumb'

comment )

Trouble is... I have quizzed him on many basic facts on Graves', such as the

antibodies, TSH etc. and he does not seem to understand this as well ,as my

last years of almost daily research has taught me. So I can not believe he

is the expert, despite his other medical knowledge, and he is very good at

many other things.

It is not his fault either. All he has to go on is the same old studies we

see so often. New facts are appearing all the time.

THEN new studies will show that what we are now doing and learning about

Graves', NOW ... is so much better.

Back to the story....

The end comment on Graves' not possibly being in remission for good, is

ALWAYS concluded with the statement that :

" any patient with Graves' reappearing a second time is never going to beat

this. All the studies prove this fact. WHEN my Graves' comes back, *and it

will* , I have no choice but to take the RAI. "

I am so tired of this.

They said the same thing back when I first got sick.

AFTER a minimum of 16 years of hyper that was diagnosed as menopause....and

was NOT!

They said this at every appointment during active Graves'.

And now they say it at every appointment since.

How difficult would it be to consider the fact that a documented highly

intelligent woman, educated, home owner, small business owner, surrounded by

equally responsible intelligent friends, cat lover, tree hugger, and

genuinely nice person, might, just might, have a friggin' clue !

Wonder if my high BP in the doctors office might have a cause ?

;-)

-Pam L-

who had the entire afternoon off today and did absolutely nothing productive

at all !

What fun. :-) It has been a long hard week.