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and Ken,

I have not heard anything about , but I will let you know

when I do. I think they were supposed to call , but

is not home yet. She was going to visit other relatives

after Chicago.

I spent the whole day thinking of and what might have been

going on with him and his parents. It is just not fair. , you

saw , I am sure, and you know the situation. It just breaks

my heart that DOCTORS could allow this to happen.

Anyway, before I get on my soapbox again, I will stop here. I think

you all know how I feel. I promise to update you when I know

anything.

Jodi

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Regarding the below

I know Dr. H can't tell us their address or info because of

confidentiality, but I bet if you asked her she would forward a letter

from the group to this family telling them that we want to help...

Jeanne

> I am hoping that somehow we will hear from 's parents and

> find out where they are. I told them to let us know so that we can

> call them, send letters and send gifts. They need our support, but

> we can't do it unless they let us know where they are.

>

> needs our prayers right now. His survival is dependent on

> it. Even Dr. Harbison shed a tear for him.

>

> Jodi

>

>

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  • 1 month later...

PS. (my brain has definitely gone missing today!). Just reading the posts, and

wondered what medication you take?

Aldyth

Buck wrote:LOL Elaine!

Maybe I'll get a more definitive answer on whether or not I have

Hashitoxicosis, but " effectively managing " it I suspect is another whole

issue! I don't think I like being in not-well-charted territory. Still, it's

very encouraging to talk to a doctor who has heard of it before instead of

looking at you like you have 3 heads!

Re: The rhuematologist has a CLUE!!!!!

> Hi ,

> What a great doctor visit. Finally someone who knows what you're talking

> about. I'm glad she agreed that the pos ANA didn't sound alarming, and now

> maybe you can get some help. I'll be curious to hear how Hashitoxicosis is

> effectively managed. Take care, Elaine

>

>

>

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PS. (my brain has definitely gone missing today!). Just reading the posts, and

wondered what medication you take?

Aldyth

Buck wrote:LOL Elaine!

Maybe I'll get a more definitive answer on whether or not I have

Hashitoxicosis, but " effectively managing " it I suspect is another whole

issue! I don't think I like being in not-well-charted territory. Still, it's

very encouraging to talk to a doctor who has heard of it before instead of

looking at you like you have 3 heads!

Re: The rhuematologist has a CLUE!!!!!

> Hi ,

> What a great doctor visit. Finally someone who knows what you're talking

> about. I'm glad she agreed that the pos ANA didn't sound alarming, and now

> maybe you can get some help. I'll be curious to hear how Hashitoxicosis is

> effectively managed. Take care, Elaine

>

>

>

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PS. (my brain has definitely gone missing today!). Just reading the posts, and

wondered what medication you take?

Aldyth

Buck wrote:LOL Elaine!

Maybe I'll get a more definitive answer on whether or not I have

Hashitoxicosis, but " effectively managing " it I suspect is another whole

issue! I don't think I like being in not-well-charted territory. Still, it's

very encouraging to talk to a doctor who has heard of it before instead of

looking at you like you have 3 heads!

Re: The rhuematologist has a CLUE!!!!!

> Hi ,

> What a great doctor visit. Finally someone who knows what you're talking

> about. I'm glad she agreed that the pos ANA didn't sound alarming, and now

> maybe you can get some help. I'll be curious to hear how Hashitoxicosis is

> effectively managed. Take care, Elaine

>

>

>

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  • 2 weeks later...

Hi ,

Welcome to our group!

>>>so I guess I'll have to set up another e- mail because I don't want over

>>>100 on my work e-mail. Or could I just read them from the site and not

>>>receive everyones?

You don't have to set up another e-mail address of your own if you don't

want to. You can read them on the site. To change your settings go to

http://groups.yahoo.com/group/graves_support/

you will have to sign in. Once you are signed in go to Edit My Membership

on the right side, a blue link and click on that; Scroll down to the 3rd

headig where it says Message Delivery and you have choices there. Right now

it is probably set at individual e-mails,

Daily Digest in which you will get one e-mail for

every 25 posts...for me when I tried this, it makes responding to one person

harder, and it is a LOT of reading on some days...the last one is No email.

Don't send me email, I'll read the messages at the Web site. Click that one,

and you may want to click in the last catagory the Do not convert to HTML if

you go back to getting individual e-mails one day. Eliminates a lot of

garbage. At the bottom MAKE SURE to click Save Changes.

Then you can go to the home page listed above, click on messages and it will

take you right to the message pages...use the Next and Previous buttons to

change pages. You can also use the search engine for the archives from here

too. Sometimes we are a very busy group and can get inundated with lots of

emails...and especially since we are growing so quickly. One thing, between

messages you will probably get ads, right above the ad is a continue to

message link, just click on this. It is a bit slower doing this, but many

people do it this way, as do I many times if I am going to be away from

home.

>>>Sorry so slow on this, I've just never done this before.<<<

I use to be like that too ...was scared to death of this computer

stuff. You will get past this in no time with practice. If you have

computer questions you can write to me privately any time and I will help

you out with what I am able to as far as manuevering the group. My private

e-mail address is at the top of this message.

>>>I also have Hashimotos and I've been told there is nothing to do but wait

>>>for my blood test to show I need hormone. I have had hypo symptoms for a

>>>couple of months and I'm taking vitamins and minerals.<<<

Do you have both graves and hashi's? Several people in this group do have

both also. There are many who are coming to believe that graves and hashi's

are the same disease, just graves is the hyper end of it. in this group

started out with Hashi's was on hormone replacement then ended up with full

blown graves.

There are many here who have fought the fight agains hypO because we have

been sent there through surgery or RAI...we understand what you are going

through. Education and becoming proactive in your disease and treatment is

Key for us to function properly! Getting copies of our labs is another

important thing so we can follow our journey. You will learn to read and

understand your labs in this group. The more involvement you have with

group, the quicker your understanding will become.

Is your doctor running the proper labs on you to know exactly what is going

on? The Free T3 and Free T4 are the most accurate labs available and until

I started having these run to monitor me, I was left in hypOhell for over 4

years...not a fun place to be! Only when my Free levels started being run

did I finally get on proper hormone replacement and have evolved from there.

While your on the home page, there is a menu on the left side, pop into the

Files section and read the Welcome letter from Pam B. You won't have to

deal with the atd issue, but she has some wonderful wonderful information

and links in this letter. It will also help you. She includes her homepage

link and her journey is fascinating to read as she is using a full

alternative approach for treating her graves and she shares it all with us

which is wonderful to follow. That being said, we need to be very educated

and aware of using alternative measures just as much as we have to be this

way with allopathic treatments.

Fire off questions, read, and know your not alone in this. Oh one last

thing, there is an Extended symptoms list in the Files section too. It is

much more thorough than the short lists doctors tend to use and may explain

even more symptoms that you are having but have been told 'are not thyroid

related'.

Again, welcome to our group!

Jody

_________________________________________________________________

MSN Photos is the easiest way to share and print your photos:

http://photos.msn.com/support/worldwide.aspx

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  • 2 weeks later...

Hi Aldyth

Good luck with your appointment. I hope he listens to you.

Sue

At 10:06 AM 3/10/2002 -0700, you wrote:

>

> He's a bit text book driven, so if it's not something he is famili

>

>

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Hi Aldyth

Good luck with your appointment. I hope he listens to you.

Sue

At 10:06 AM 3/10/2002 -0700, you wrote:

>

> He's a bit text book driven, so if it's not something he is famili

>

>

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Hi Aldyth

Good luck with your appointment. I hope he listens to you.

Sue

At 10:06 AM 3/10/2002 -0700, you wrote:

>

> He's a bit text book driven, so if it's not something he is famili

>

>

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  • 2 weeks later...

This is the best laugh I've had on this list in a long long time. Spice girl!!!

Let me guess: this was a male doctor?

Re:

Hi

here is a quote I was given by endro in 97 after rai you will be like a

spice girl in a month.

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annamclifford@... wrote:

>

> here is a quote I was given by endro in 97 after rai you will be like a

> spice girl in a month.

Would that be the little known band member - old spice?

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> annamclifford@... wrote:

> >

> > here is a quote I was given by endro in 97 after rai you will be like a

> > spice girl in a month.

>

> Would that be the little known band member - old spice?

OOOOOHHHHHHHH PAIN! THE PAIN! Bad Simon, bad pun, no chocolate chip cookie

for you :-)

Hehehehehehehe

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Good thing I wasn't drinking anything or it would have gone up my nose!

Thanks for a good laugh and Simon!

Diagnosed 7/01 very early with Graves', alternative treatment. So far

euthyroid since 10/01. Also have

high TPO ABs, new theory is Hashitoxicosis. T4's currently normal, but on a

TSH rollercoaster.

Early eye symptoms.

Re: Re:

> annamclifford@... wrote:

> >

> > here is a quote I was given by endro in 97 after rai you will be like a

> > spice girl in a month.

>

> Would that be the little known band member - old spice?

>

>

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

> 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 do not have the endorsement

of

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

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

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

>

>

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Wow ! I haven't quit laughing about that yet! That should be

the opening line for our " endo-scripts unveiled " book. Sure is a

one-of-a-kind!

Don't you wish you could go back in time, and take Simon and

with you to that office visit? You could come back at him (assuming

it's a him) with, " Yeah, like WHAT spice? " Old Spice, Myxedema

Spice, etc.

Thanks so much!

Chris

> > >

> > > here is a quote I was given by endro in 97 after rai you will

be like a

> > > spice girl in a month.

> >

> > Would that be the little known band member - old spice?

> >

> >

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

> > 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 do not have the

endorsement

> of

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

emails.

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

--------

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

> >

> >

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  • 2 weeks later...

Hey ,

What you say makes sense. I guess I need to go back and look at this stuff from

another angle. If what we are really dealing with is a bunch of different

alleles and some of them have some things and others others, and some are

expressed in measurable ways and some more latent and/or immesurable that begins

to explain why this business is so annoyingly hard to get a handle on.

Its difficult to keep a scientific perspective on things when you are feeling

like a hypochondriac and being treated like an idiot. I just have this feeling

that I need to understand this so when my kids have the problem, I will somehow

know what to do. My daughter already has the muscle pain that looks like what

they told me was FMS but was probably Graves. My son has times when his hands

shake. I don't want them to have to go through this. I guess that they will

never consent to RAI, at least they won't without having some knowledge about

it. Perhaps, based on some of our experiences, there will be progress.

At least we can hope so for your little ones. Do take care of yourself. This

is the long haul, the most physically challenging part. Are you sleeping in a

recliner yet?

Sending you all my best wishes. Thanks again for your help. Anything at all

that you think of in this category (the autoimmune thing) I'd appreciate hearing

about.

Laurel

Re: et. al with rant and questions

Hi Laurel-

Yes, my immune system should be suppressed right now. It probably is more

than usual because I'm in the last trimester of pregnancy and on steroids.

Even with a suppressed immune system though, you can still have autoimmune

problems but not as bad as if you're not suppressed. I'm flummoxed because

everyone around me is getting the flu and I'm not. That and the TED acting

up make me think my immune system is working too well at this point. Go

figure!

Even without circulating antibodies, lymphocytes (that make the

autoantibodies) travel and concentrate in tissue where they " think " an

infection is. So, it would be possible to have autoantibodies even though

they don't show up on blood tests. But since some people end up with

exophthalmus and others don't (same with pretibial myxedema) that would

suggest that there are differences in susceptible patients' receptors. This

is if the autoantibodies that cause exophthalmus, pretibial myxedema and

thyroid disease are the same (autoimmunity is due to some malfunction in

self-recognition).

I tend to think autoantibodies that cause exophthalmus are different

autoantibodies that occur together with thyroid antibodies (this is also due

to some malfunction in self-recognition) and the DNA responsible for them is

in the same region of the genome. So if one gene gets turned on the other

does too but not all people have the same copies of that version of that

gene (so some get exophthalmus and others don't). That doesn't mean that's

right. It just makes more sense to me.

Anyhow, even the experts don't understand autoimmune disease very well so

don't feel bad if you don't understand it. I don't understand it either.

Just when I think I'm getting it, some other question comes along that makes

me realize that I don't understand anything at all (especially with this

pregnancy brain).

Take care,

> Hi ,

>

> I know what you mean about the students. Having just finished that BA was

a real eye opener. Education is a privilege. Many of the kids in my

classes acted as though it was their right to have that A. Many didn't show

up at all until the instructor evaluations and then did so to fill out a

negative comment.

>

> I'm not sure if they do that because they think the world owes them

something, they are conditioned to believe that they ARE their grades, or

that their parents have purchased everything else so why not a degree? I

can accept a little annoyance with a poor teacher but some of these

professors are legendary in their fields. A little respect might be in

order.

>

> On the autoimmune issue, I just ordered Elaine's new book. It will be a

while before its here. I'm interested in how much of this is theory and how

much has been actively studied. No matter what is going on answers are

always good aren't they? Its only frightening to me when I don't understand

it. I like to know when there is guessing and when there is some basis in

fact. I would be really reluctant to have the thyroidectomy because of the

danger of damage to the parathyroids. I really don't need another chronic

problem to deal with. On the other hand if it would take care of the

problem, which you point out it probably won't (for good reasons), why have

it done?

>

> The exopthalmos you mention is a red flag issue. I'm sorry to hear that

yours is a problem right now. My right eye, the one that never really

receded and which still has a lid retraction problem, the one that had the

retinal tear with the TSS episode, is slightly worse lately. I know that

this stuff has been known to happen years after the thyroid problem but I

had been hoping that mine was almost done. If you have no circulating

thyroid antibodies, and if it is those antibodies which cause the eye

disease, then why does this happen? Is it really a different complex or

what?

>

> Shouldn't your autoimmunity be somewhat depressed just now? I guess I

don't understand this process and its really annoying. (I find anything I

can't understand annoying)

>

> Hope you are feeling great otherwise.

> Thanks again,

> Laurel

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

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 do not have the endorsement of

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

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

------

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In a message dated 10/31/2002 10:27:45 PM Central Standard Time,

Geneva248@... writes:

> My daughter already has the muscle pain that looks like

> what they told me was FMS but was probably Graves.

> My son has times when his hands shake.

Laurel

I hope not, but could those symptoms be from Type 1 Diabetes?

Bertta

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  • 3 weeks later...

Hi Pat sorry to hear about .Hope everything works out ok.Just

wanted to let you know that you are all in my prayer's for a quick

and healthy recovery.

Sheldon (G-pa to Laikyn RSS 7months 9lbs4oz, 21 " )

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Hi Pat sorry to hear about .Hope everything works out ok.Just

wanted to let you know that you are all in my prayer's for a quick

and healthy recovery.

Sheldon (G-pa to Laikyn RSS 7months 9lbs4oz, 21 " )

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Hi Pat sorry to hear about .Hope everything works out ok.Just

wanted to let you know that you are all in my prayer's for a quick

and healthy recovery.

Sheldon (G-pa to Laikyn RSS 7months 9lbs4oz, 21 " )

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Hi Pat sorry to hear about .Hope everything works out ok.Just

wanted to let you know that you are all in my prayer's for a quick

and healthy recovery.

Sheldon (G-pa to Laikyn RSS 7months 9lbs4oz, 21 " )

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Hi Pat sorry to hear about .Hope everything works out ok.Just

wanted to let you know that you are all in my prayer's for a quick

and healthy recovery.

Sheldon (G-pa to Laikyn RSS 7months 9lbs4oz, 21 " )

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