Re: (unknown)

[Guest guest]

Hi ,

I'm certain I had it as a child, precipitated by the stress of losing an

older brother to a train accident.

Although GD in children is rarely diagnosed, the number of children diagnosed

with GD appears to be escalating. This could be due, though, to better

testing. For instance, thyroid lab tests were very crude, with only a test

for protein bound iodine available until the 1970's.

I hadn't ever heard of the onset usually being late in life. The usual onset

is women between the ages of 20-40.

[Guest guest]

Hi Amy,

I'm so happy you were able to talk to , keeping my fingers crossed that he's home real soon!!!!!

Good luck at your doctor's appointment, and have a fun weekend!!!!

maria

[Guest guest]

> Hi ,

> I'm certain I had it as a child, precipitated by the stress of

losing an older brother to a train accident.

> I hadn't ever heard of the onset usually being late in life. The

usual onset is women between the ages of 20-40.

Hi Elaine,

I'm very sorry for your loss. It's a very hard thing when children

die. It's just not supposed to be that way, you know?

What kind of things do you remember that make you feel you had it

back then?

I didn't mean to say the onset was usually late in life, I said

usually later in life. Meaning later in life than childhood.

[Guest guest]

Hi ,

I had severe light sensitivity as a child and a hyper immune system. When I

began having periods, I never had more than once a year. My neighborhood

doctor told me to have my basal metabolism rate tested, but I never did. And

I had the typical Graves' stare so people, especially teachers, always

commented that I looked like I was going to cry. I think my worst symptoms

were in my mid 20's after having my children. Then, at 5'8 " my weight dropped

to 112. I developed high blood pressure but my doc only ordered a T4 (TSH's

were pretty new then). My T4 was high, but in the normal range so he put me

on diuretics which helped my puffy eyes and beta blockers which reduced my

palpitations. By the time I was diagnosed with Graves' most of my hyper

symptoms were gone. My weight was normal and I was off all blood pressure

meds. When I was eventually diagnosed with Graves' my T4 and T3 were both on

the high side of normal, but my TSH was suppressed.

[Guest guest]

Hi ,

It was me that lost a child. After that and we moved back east I just

started not feeling good...constant colds, then tremors all the hyper stuff

that I ignored...I'm one that firmly believe(s)(ed) one can talk themselves

out of most things...but not this.

But when I was a child my heat sensitivity, an unexplained illness that kept

me out of school for 2 months with no answers and my eyes have always been

ultra sensitve to any light...so I think it is a possiblily that I have had

it since childhood...

Undiagnosed GD may also be the reason my pregnancies were never easy.

Something new I have been thinking about.

Have a good weekend.

Jody

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[Guest guest]

Elaine,

What's this? I was a super skinny kid, and spent a lot of time staring, so

much so that it was frequently commented upon. I always thought it

psychological, part of the attempt to deal with a totally miserable

childhood by walling myself off and " closing " my vision to see only what was

directly in front of me. Somehow that was comforting. It was also the only

time my jiggly legs were quiet, I think.

Terry

> From: daisyelaine@...

> Reply-To: graves_support

> Date: Sat, 28 Apr 2001 22:54:34 EDT

> To: graves_support

> Subject: Re: Re: (unknown)

>

> I had the typical Graves' stare

[Guest guest]

Hi Terry,

That stare you mention sounds typically Gravesian. So do the jiggly legs.

[Guest guest]

What do ya'll mean by " jiggly legs " ??

[Guest guest]

I see (and I understand!)

[Guest guest]

Elaine,

Very very interesting. Thanks for documenting that. I think we

should all document things like that. We could work on addressing the

fact that GD is rarely considered in children if we could show

evidence that there are a group of early symptoms.

Light sensitivity is a good one. I wonder if others had that

symptom as children? I didn't.

What do you mean by a hyper immune system? What would be the

symptoms of that?

Interesting about the lack of peroids. I always had plenty of them

and heavy.

Yes, the worst seems to come in full womanhood. I am 5'8 " too and

when I stopped working I was 111 lbs. I remember the doctor at work

(public health) said my blood levels were those they would expect to

see in a starving person. And there was a long peroid of time there

that I felt I was dying. There is no need for this, if we can get

diagnosed earlier! I would like to see if we can find a way to

identify this much earlier for future generations. Our grand kids

need us to work on this.

> Hi ,

> I had severe light sensitivity as a child and a hyper immune

system. When I

> began having periods, I never had more than once a year. My

neighborhood

> doctor told me to have my basal metabolism rate tested, but I never

did. And

> I had the typical Graves' stare so people, especially teachers,

always

> commented that I looked like I was going to cry. I think my worst

symptoms

> were in my mid 20's after having my children. Then, at 5'8 " my

weight dropped

> to 112. I developed high blood pressure but my doc only ordered a

T4 (TSH's

> were pretty new then). My T4 was high, but in the normal range so

he put me

> on diuretics which helped my puffy eyes and beta blockers which

reduced my

> palpitations. By the time I was diagnosed with Graves' most of my

hyper

> symptoms were gone. My weight was normal and I was off all blood

pressure

> meds. When I was eventually diagnosed with Graves' my T4 and T3

were both on

> the high side of normal, but my TSH was suppressed.

[Guest guest]

I guess I have had GD since a very, very young age then.

Thanks,

Terry

> From: daisyelaine@...

> Reply-To: graves_support

> Date: Sun, 29 Apr 2001 10:55:05 EDT

> To: graves_support

> Subject: Re: Re: (unknown)

>

> Hi Terry,

> That stare you mention sounds typically Gravesian. So do the jiggly legs.

>

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

> 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.

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

>

>

[Guest guest]

The always-moving-drive-your-mother-mad, swinging perpetual motion machine.

> From: k9mom1@...

> Reply-To: graves_support

> Date: Sun, 29 Apr 2001 11:02:44 EDT

> To: graves_support

> Subject: Re: Re: (unknown)

>

> What do ya'll mean by " jiggly legs " ??

>

>

>

[Guest guest]

OMG!!! The jiggly legs are Gravesian?!?!?! I have done that since I could

walk and whenever I was sitting and my feet touched the ground they were

going a mile a minute!!! They still do at times, even when I'm sitting

cross legged on the couch I can get them going LOL

Jody

_________________________________________________________________

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[Guest guest]

Terry,

Mine are not the swinging...my are toes to the floor and bouncing LOL

but your right, it was a drive you mother mad and everyone else along with

her moment :-)

Jody

_________________________________________________________________

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

[Guest guest]

Talking about maybe having symptoms as a child. I never was real thin, but

I wasn't an overweight child. My sister tells me I was just perfect.

I never was one to sleep well, always up late because I couldn't sleep.

I was active always doing something When I ran alot I would get side aches.

Would drive my parents nuts with cleaning because I had to keep busy. Now,

when my illness got bad that's when I, my husband and family knew something

was wrong, because I couldn't keep order. This neat, perfect, picky person

couldn't organize because I couldn't think straight. Also I had the light

sensitive eyes as a child and irregular periods. Never had a regular period

until I was on ATD's.

I can't turn back the clock and say, " Oh, if only I would have listened to

my sister, my husband, my family and friends. " But, I didn't and that can't

be changed now. What I can do is tell people my story and hope and pray

they don't have to go through what I did.

The biggest thing I think when it comes to not really seeking better medical

help, is I was convinced that I was dying and I didn't want to find a better

doctor to tell me the truth. Now I've experienced that part in my life, a

doctor telling me I could die. It wasn't easy, but I survived the ordeal

and can go on. Somehow you always seem to deal with what life gives you.

But I hope I can say it's made me stronger, I know a little more than I did

than. Most important I learned I can " fire " a doctor if I don't like what

they are doing.

My whole purpose of being here is if just one person don't have to suffer

like I did, it is worth telling them and I hope I know more now than I did

than.

The biggest thing I've found is having support.

Debbie

[Guest guest]

Hi ,

By hyper immune system I mean that I had allergies to lots of things. Every

summer I would get poison ivy and I had many episodes of anaphylaxis. I still

have a hyper immune system, but now I have an idea of what to avoid and I

always carry my epinephrine kit.

[Guest guest]

Hi Elaine,

If your immune system was hyper and was causing allergies, would

that make allergies an autoimmune disease?

Laren

> Hi ,

> By hyper immune system I mean that I had allergies to lots of

things. Every

> summer I would get poison ivy and I had many episodes of

anaphylaxis. I still

> have a hyper immune system, but now I have an idea of what to avoid

and I

> always carry my epinephrine kit.

[Guest guest]

Hi ,

Allergies aren't recognized as autoimmune diseases although unless allergic

asthma develops. Allergic asthma is an autoimmune disease. Also, allergies

are known to trigger autoimmune disease and exacerbate symptoms. In Japan,

allergies to cedar pollen are considered the primary trigger for Graves'

disease.

[Guest guest]

lol, this is soooo funny. my legs have bounced like

this since i was little. my mother always went nuts

about it, especially at the dinner table. it still

drives my hubby nuts because sometimes i shake the

whole couch or bed and even after almost 20 years of

exposure, he's still can't handle it. lol

donna

--- Jody Spitale wrote:

> OMG!!! The jiggly legs are Gravesian?!?!?! I have

> done that since I could

> walk and whenever I was sitting and my feet touched

> the ground they were

> going a mile a minute!!! They still do at times,

> even when I'm sitting

> cross legged on the couch I can get them going LOL

> Jody

>

_________________________________________________________________

> Get your FREE download of MSN Explorer at

> http://explorer.msn.com

>

>

__________________________________________________

[Guest guest]

Donna!!!!!!!!!!!! Is that what has happened to mine too? If I drag it

back up where it should be...do you think my middle will go down?

LOL

You make me smile, thanks! I do hope all is well for you, so don't you

forgot to follow up please!

Jody

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[Guest guest]

Hi Sara,

Yes most of us have and some still do, the headaches. What has your husband

been diagnosed with? Would you like to share his other symptoms with us?

We are a wonderful group here and lots of caring and knowledgeable people

who will do all they can to help answer your questions.

Take care,

Jody

_________________________________________________________________

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

[Guest guest]

Well, he has not be diagnosed, because doctors have been saying since

he was 13 that it is one thing or another, and the closest diagnosis

has been Lupus, but he does not quite fit that either. They just put

him there because they couldn't decide on anything else, and it seems

to be somesort of autoimmune problem. He does not have headaches, in

the plural sense. He has had one headache since around puberty. He

is very thin, not emaciated tho. He has constant diahrrea(sp?) and

stomach upset, has a dairy allergy, sometimes the skin around his

eyes turns scaley, dry and puffy, for some unknown reason. He has

arthritis, lots of trouble sleeping, tho that and the stomach

problems COULD be associated with a constant headache. The doctors

don't know where to go and he has given up. So since I'm relatively

new to this, I've started my own search. Into everything I can. And

since I've already had one " One in a million " disease touch my life,

I'm hoping this will be something known, and I can help my husband in

anyway that I can.

Sara

> Hi Sara,

> Yes most of us have and some still do, the headaches. What has

your husband

> been diagnosed with? Would you like to share his other symptoms

with us?

>

> We are a wonderful group here and lots of caring and knowledgeable

people

> who will do all they can to help answer your questions.

>

> Take care,

> Jody

> _________________________________________________________________

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

[Guest guest]

Sara,

Get ALL of your husbands lab tests and share them. There are others here

who may be able to at least point you in the right direction. It can not

have been a fun life for him if he has been struggling with all of this

since his teenage years. Do you know if they have done a full thyroid panel

(not just a tsh) on him, or antibody testing, if so for which ones? It will

take some doing to get copies of his lab tests for as far back as you

possibly can...and from now on, when he has blood drawn, make sure they know

you want a copy of them. We have to go and pick them up at the lab

here...and hubby can't pick mine up nor can I get his...but I get them

regularly now.

Hang in there Sara and I will keep you and hubby in my prayers.

Take care,

Jody

_________________________________________________________________

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

[Guest guest]

Sara,

I dont' know where you are, but if there's a good acupuncturist/herbalist

(not just acupuncturist; he needs the herbs the most) you should be able to

get him treated and healed. This kind of stuff, that the docs have no clue

about, is what Chinese medicine seems to most effectively treat. If you're

anywhere near the SF bay area, I will recommend my husband, who's one of the

best.

Terry

> From: sneezr@...

> Reply-To: graves_support

> Date: Wed, 06 Jun 2001 22:41:12 -0000

> To: graves_support

> Subject: Re: (unknown)

>

> Well, he has not be diagnosed, because doctors have been saying since

> he was 13 that it is one thing or another, and the closest diagnosis

> has been Lupus, but he does not quite fit that either. They just put

> him there because they couldn't decide on anything else, and it seems

> to be somesort of autoimmune problem. He does not have headaches, in

> the plural sense. He has had one headache since around puberty. He

> is very thin, not emaciated tho. He has constant diahrrea(sp?) and

> stomach upset, has a dairy allergy, sometimes the skin around his

> eyes turns scaley, dry and puffy, for some unknown reason. He has

> arthritis, lots of trouble sleeping, tho that and the stomach

> problems COULD be associated with a constant headache. The doctors

> don't know where to go and he has given up. So since I'm relatively

> new to this, I've started my own search. Into everything I can. And

> since I've already had one " One in a million " disease touch my life,

> I'm hoping this will be something known, and I can help my husband in

> anyway that I can.

> Sara

>

>

>> Hi Sara,

>> Yes most of us have and some still do, the headaches. What has

> your husband

>> been diagnosed with? Would you like to share his other symptoms

> with us?

>>

>> We are a wonderful group here and lots of caring and knowledgeable

> people

>> who will do all they can to help answer your questions.

>>

>> Take care,

>> Jody

>> _________________________________________________________________

>> Get your FREE download of MSN Explorer at http://explorer.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.

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

>

>

[Guest guest]

Terry,

Does your husband work with GO?

F

> >> Hi Sara,

> >> Yes most of us have and some still do, the headaches. What has

> > your husband

> >> been diagnosed with? Would you like to share his other symptoms

> > with us?

> >>

> >> We are a wonderful group here and lots of caring and

knowledgeable

> > people

> >> who will do all they can to help answer your questions.

> >>

> >> Take care,

> >> Jody

> >> _________________________________________________________________

> >> Get your FREE download of MSN Explorer at http://explorer.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.

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

> >

> >