To All

March 29, 2000

I can't imagine what it does to the body and organs to those of you who

have/had to deal with both Hashimotos and Graves...I haven't had to face

that and hope I never do.

, Was just a curosity question because i e-mail with two other women in

their mid-40's and we all had our tonsils out at an early age 4/5/6 around

there in the 50's back when they didn't think the tonsils made a

difference...I was born with 3 strep germs also and a heart murmur (which

has never affected me physically) and am just trying to figure out for

myself what/when/where/why/how GD became part of my life. BTW...glad you

are now on this BB too

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March 29, 2000

Jody in response to your question about tonsils, I still have mine

and they haven't done much to stop first Hashimotos and now Graves.

Just my 2 cents.

April 1, 2000

In a message dated 3/30/00 12:38:13 PM Eastern Standard Time,

luckystrike@... writes:

<< Hi everyone. Last night I was on the phone with a friend I hadn't

talked to in a while and she was asking me questions about GD and

auto-immune diseases. Her husband was diagnosed with adult onset

diabetes 6 years ago, in the last 3 months she told me one of their

nieces was finally diagnosed with Lupus after being told it was

everything under the son except Lupus. >>

Jody,

That sounds soooo familiar! My aunt, my mom's sister, has been told numerous

times that she has lupus, then told no, you don't have it to being told once

again that she does have it. Her first diagnosis came about 12 years ago and

it's been going back and forth ever since. It's a hard disease to fully

understand from what I hear. I know that the symptoms are much like

Fibromyalgia. I was questioning my mom about her symptoms cuz of the way I

was feeling when I was first diagnosed with GD. The tiredness, having good

days and bad days, the muscle/joint aches, it's all the same thing that my

aunt feels, on her good and bad days.

I'm really sorry to hear bout your friend.....

Jewls

April 1, 2000

Thanks Jewls,

I think the thing that is truly scaring me the most right now is so very

many people in my very small county are being diagnosed with auto-immune

diseases...makes me wonder how much of it is pure environmental.

Has your Aunt been checked for GD if she is exhibiting the same signs you

were before diagnosis?

*HUGZ*

Jody

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April 2, 2000

In a message dated 4/2/00 12:20:57 AM Eastern Daylight Time,

luckystrike@... writes:

<< I think the thing that is truly scaring me the most right now is so very

many people in my very small county are being diagnosed with auto-immune

diseases...makes me wonder how much of it is pure environmental.

Has your Aunt been checked for GD if she is exhibiting the same signs you

were before diagnosis? >>

That would be scarey Jody...it's like that community were the kids were being

born with birth defects and they found out it was from the power lines or

something. It's also like in that movie (which was a true story) about the

water being contaminated too.....I'd do some more checking if I were you.

I honestly don't know if she's been checked for GD. I would think so, but am

trying not to assume here. I'll check with her to find out for sure.

Jewls

September 12, 2000

Boy, Jody, those cysts sound like they need to be biopsied. Maybe just a

needle aspiration, nothing really invasive. And the drainage should probably

be cultured. It could be a bacteria that is resistant to the antibiotic

they're using.

September 12, 2000

Hi Terry,

They haven't been out of the country, or the county for that matter in a

very long time. Her husband has Hep C and not doing to well at the moment.

Jody

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September 12, 2000

Thanks Elaine,

I will pass this on to her. She is in so much pain and has been for months.

Jody

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September 12, 2000

Just curious, since I know someone who went to Costa Rica and sat on the

beach and ended up with a horrible, flesh-eating " cyst-like " disease (they

had to go back to CR to get it treated, as here they were clueless and

wanted to do total body radiation! There, they have a drug but it's not

approved here. Both husband and wife got it, as did the 2 year old. Of

course there's no warning about this kind of thing, bad for tourism!

TerryP

>

> Reply-To: graves_supportegroups

> Date: Tue, 12 Sep 2000 16:58:19 EDT

> To: graves_supportegroups

> Subject: To All

>

> Hi everyone,

> I am asking for any information for a friend of mine who does not have GD.

> She has been on antibiotics for 6 months for what appears to be a cyst under

> her left arm. The antibiotics are doing nothing what so ever and the 'cyst'

> is now as big around as a silver dollar and out about 2 inches...to the

> point where she can no longer put her arm down.

>

> There are also apprx. 8/9 little cysts that look to be the size of peas in

> a V formation under her arm and are also very painful and for the last month

> she has been having several appear on her left breast, these tend to drain

> and are equally painful.

>

> She has been to 4 drs. had more tests than you can imagine, they just did

> one to check insulin levels which came back a high normal. Today the one

> dr. told her to see such and such a surgeon, have it lanced and hope for the

> best...this is our local talent here

>

> Does anyone have any clue as to what is going on with her, what she could do

> or web sites I can print and give her about this. So far, no one here

> has/can put a name on what it is, or what is causing it.

>

> Thanks for any help, and I'm sorry to bring up a non-graves question here,

> but neither she nor I have a clue where to turn next.

>

> Jody

> _________________________________________________________________________

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>

> Share information about yourself, create your own public profile at

> http://profiles.msn.com.

>

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

> 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.

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

>

September 13, 2000

Jody, My coworker had the exact same thing you are talking about. She went

and got it lanced. The docs surmised in her case that it was from being on

accutane and prematurely stopping it during mid treatment. Accutane is a

heavy duty med for acne, in case someone out there was wondering.

Jen, Sis w/ GD age 29/dx'd 25

To All

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</> eGroups My Groups

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<http://click./1/8150/6/_/585824/_/968792433/>

Hi everyone,

I am asking for any information for a friend of mine who does not have GD.

She has been on antibiotics for 6 months for what appears to be a cyst under

her left arm. The antibiotics are doing nothing what so ever and the 'cyst'

is now as big around as a silver dollar and out about 2 inches...to the

point where she can no longer put her arm down.

There are also apprx. 8/9 little cysts that look to be the size of peas in

a V formation under her arm and are also very painful and for the last month

she has been having several appear on her left breast, these tend to drain

and are equally painful.

She has been to 4 drs. had more tests than you can imagine, they just did

one to check insulin levels which came back a high normal. Today the one

dr. told her to see such and such a surgeon, have it lanced and hope for the

best...this is our local talent here

Does anyone have any clue as to what is going on with her, what she could do

or web sites I can print and give her about this. So far, no one here

has/can put a name on what it is, or what is causing it.

Thanks for any help, and I'm sorry to bring up a non-graves question here,

but neither she nor I have a clue where to turn next.

Jody

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

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.

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

March 14, 2001

Jody:

I think that my doctor was receptive to my letter because he got GD also.

Even then, he immediately opted for RAI (within weeks of his diagnosis) and

was perplexed why I didn't do so as well, since he " feels great. " I sent

him a copy of Thyroid Solution and hope that it will open him up some more.

Plus, he was never an arrogant doctor to begin with.

Your post brings to mind something I've been wondering - is it appropriate,

for example, on 's Shomon's list of doctors, to say something if I've

had a negative experience with a doctor that is recommended?

At 02:02 PM 03/14/2001 -0500, you wrote:

>what does everyone think about *maybe* sharing the name and snail mail

>address of that dr. and those who choose to, write him a letter about living

>life with GD.

March 14, 2001

Jody:

I think that my doctor was receptive to my letter because he got GD also.

Even then, he immediately opted for RAI (within weeks of his diagnosis) and

was perplexed why I didn't do so as well, since he " feels great. " I sent

him a copy of Thyroid Solution and hope that it will open him up some more.

Plus, he was never an arrogant doctor to begin with.

Your post brings to mind something I've been wondering - is it appropriate,

for example, on 's Shomon's list of doctors, to say something if I've

had a negative experience with a doctor that is recommended?

At 02:02 PM 03/14/2001 -0500, you wrote:

>what does everyone think about *maybe* sharing the name and snail mail

>address of that dr. and those who choose to, write him a letter about living

>life with GD.

March 14, 2001

HI everyone:

Just an off-the cuff thought on how we communicate the larger thyroid

message to our doctors. I think that getting letters from strangrs

critiquing the way I did my job would make me pretty defensive. Please,

it's not that I think the majority (yes, majority) of these docs need MAJOR

education. They do.

But education and change are most effective when *inspired* in the most

positive sense of the word, rather than a negative one.

But I think Jody's on to something: isn't there something we can do, with

this collective energy and talent and experience, to help educate our

doctors and convey our dissatisfaction with the thyroid status quo?

Certainly, writing individual letters is one route (I wrote one to my old

endo already).

But maybe we can write a collective essay or letter, discussing our

experiences and newfound community, that we could distribute widely? We

could offer it online for other thyroid patients to copy and use; we could

routinely mail it to past, current, and prospective doctors.

Haven't thought beyond this, but maybe the letter could initially summarize

our main beliefs, provide a few examples of past " horrors " and/or successes,

expectations of endos. A little like a thyroid manifesto with a heart?

B

Re: To All

> Jody:

>

> I think that my doctor was receptive to my letter because he got GD also.

> Even then, he immediately opted for RAI (within weeks of his diagnosis)

and

> was perplexed why I didn't do so as well, since he " feels great. " I sent

> him a copy of Thyroid Solution and hope that it will open him up some

more.

> Plus, he was never an arrogant doctor to begin with.

>

> Your post brings to mind something I've been wondering - is it

appropriate,

> for example, on 's Shomon's list of doctors, to say something if I've

> had a negative experience with a doctor that is recommended?

>

> At 02:02 PM 03/14/2001 -0500, you wrote:

> >what does everyone think about *maybe* sharing the name and snail mail

> >address of that dr. and those who choose to, write him a letter about

living

> >life with GD.

>

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

> 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.

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

>

March 14, 2001

,

Thank you for your feedback on my suggestion. I knew in my heart it

wouldn't be that *great* an idea, but it felt good planning it for a while

How long ago did your former dr. have the RAI? Another question, do men

that have RAI have as many problems as women do after it? And as a dr. he

can do his bloods at the first sign of going hypo and adjust his meds, if

not on his own, just by calling a fellow endo. The scary thought is how he

may be using his 'feeling great' after RAI to sell that to other patients

Write Shomon and ask her if one could put a negative experience on the

site about 'be wary of docs'...whenever I have written her, she has gotten

back to me in no more than 2 days.

Take care,

Jody

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March 14, 2001

,

What a much better idea! I'm in if we can come up with some way of doing

this.

Jody

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March 14, 2001

,

What a great idea! I bet if it was started and passed around this group we'd

get quite a powerful piece of literature--just need someone to take charge

of it, edit it, and someone to figure out means of distribution.....hey,

maybe the talk show circuit (Oprah?)...oops I'm dreaming again, but maybe a

bit serious too.

Terry

>

> Reply-To: graves_support

> Date: Wed, 14 Mar 2001 19:30:00 -0600

> To: <graves_support >

> Subject: Re: To All

>

> HI everyone:

>

> Just an off-the cuff thought on how we communicate the larger thyroid

> message to our doctors. I think that getting letters from strangrs

> critiquing the way I did my job would make me pretty defensive. Please,

> it's not that I think the majority (yes, majority) of these docs need MAJOR

> education. They do.

>

> But education and change are most effective when *inspired* in the most

> positive sense of the word, rather than a negative one.

>

> But I think Jody's on to something: isn't there something we can do, with

> this collective energy and talent and experience, to help educate our

> doctors and convey our dissatisfaction with the thyroid status quo?

>

> Certainly, writing individual letters is one route (I wrote one to my old

> endo already).

> But maybe we can write a collective essay or letter, discussing our

> experiences and newfound community, that we could distribute widely? We

> could offer it online for other thyroid patients to copy and use; we could

> routinely mail it to past, current, and prospective doctors.

>

> Haven't thought beyond this, but maybe the letter could initially summarize

> our main beliefs, provide a few examples of past " horrors " and/or successes,

> expectations of endos. A little like a thyroid manifesto with a heart?

>

> B

>

> Re: To All

>

>> Jody:

>>

>> I think that my doctor was receptive to my letter because he got GD also.

>> Even then, he immediately opted for RAI (within weeks of his diagnosis)

> and

>> was perplexed why I didn't do so as well, since he " feels great. " I sent

>> him a copy of Thyroid Solution and hope that it will open him up some

> more.

>> Plus, he was never an arrogant doctor to begin with.

>>

>> Your post brings to mind something I've been wondering - is it

> appropriate,

>> for example, on 's Shomon's list of doctors, to say something if I've

>> had a negative experience with a doctor that is recommended?

>>

>> At 02:02 PM 03/14/2001 -0500, you wrote:

>>> what does everyone think about *maybe* sharing the name and snail mail

>>> address of that dr. and those who choose to, write him a letter about

> living

>>> life with GD.

>>

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

>> 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.

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

>>

March 14, 2001

Jody:

My doctor was diagnosed about the same time as I was, so 9/98. He had RAI

within weeks of that. I think Elaine and (?) said that things can go

ok for 3 years post RAI, so he's coming up on that at the end of this year.

I agree that it is a shame he so blithely recommends RAI. Once the

reality sets in, he will either have to change his mind, or be in serious

denial.

At 11:12 PM 03/14/2001 -0500, you wrote:

>How long ago did your former dr. have the RAI? Another question, do men

>that have RAI have as many problems as women do after it?

March 15, 2001

Debbie,

I wish I had been intune with things and able to do research at the time I

was diagnosed...I didn't have a computer then, I didn't have the energy to

go to the library and I did believe in and trust drs.

BUT I should have realized when the dr. came in all dressed including lead

gloves that went up to his elbows carrying a lead container that something

was not right with that picture...then when he handed me that lead container

and told me to remove the pill inside the glass tube in the lead

container...and when I had that pill in my hand and started *talking

Italian* (my hands waving around with the pill in it) and the dr. shoved my

husband out the door and HE went out the door and yelled in from the doorway

to " Take the DAMN pill and quit waving it around " ...I should have KNOWN then

that this CAN NOT be safe. But I didn't...the thought never entered my

head, but then when things did enter my head at that time they never did

stay very long

I think that RAI should not even be allowed to be discussed, let alone USED

on a patient that has not been brought into a euthyroid state for at least 6

mos. and had time to research things...even encouraged to research things.

Oh to live in a perfect world eh?

Take care,

Jody

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March 15, 2001