Re: (unknown)

[Guest guest]

Hi ,

It gave me shivers looking at the lists for all three at the same time!!

You will find in the archives a very indepth symptoms list that Terry has

been working on and many of us have contributed to. Wait until you compare

that with those of GAD! How neglectful that you were probably misdiagnosed

and mismanaged for all of those years!

It is such a sad state that thyroid disease is so misdiagnosed and ignored

for so long...it should be a standard yearly test, or when someone presents

with the symptoms we have, the first test conducted

since it has become commonplace.

If you just stopped taking the Xanax without weaning yourself off of it can

cause their own problems to your system along with those you are going

through with GD.

Thank you for sharing and take care,

Jody

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[Guest guest]

Also , if your lab and other tests were done in a hospital, you, by law,

have a right to the results. Go to the Medical Records Department and sign a

release. Some places charge if they must copy more than 20 pages, and some

will need you to come back to pick them up. Give them a call first.

[Guest guest]

Hi Donna,

The incidence of children with Graves' disease is on the rise. Although it's

rare GD can develop in children less than a year old, and a recent Italian

study described three unrelated girls who developed Graves' before they were

three in one small village.

It's good to have your daughter tested for FT3, FT4 and TSH to see if she's

hyperthyroid. Depending on your insurance, they might only run the TSH first.

If initial thyroid function tests indicate that your daughter is

hyperthyroid, a test for TSI should be done. If it's negative, you can have

the other thyroid antibody tests run.

Although migraine headaches aren't a common symptom in Graves' disease,

headaches are listed as a symptom of Graves' disease. In fact, Ripken,

in her Graves' disease site affiliated with s Hopkins, describes

suffering from migraines for two years before her GD diagnosis. She's married

to one of the major league ball players in that area and has started a

educational and informational resource center that provides low cost thyroid

screening in the Baltimore area.

[Guest guest]

Hi Jody,

my daughter does have lactose intolerance, and she's better since getting off

of it, but she still gets migraines often. She travels a lot with her job and

invariably gets a migraine, and then she gets nauseated and vomits. So I

think there's another food allergy involved which she hasn't figured out yet.

[Guest guest]

Hi Debbie,

Wow, what exciting news you're waiting for. Let us know when you find out.

I wonder how you tore your tendon without knowing it. I tore one in my right

upper arm and several major blood vessels a few years ago. It was a major

trauma involving three dogs and a chain used for a leash (bad idea). I still

have a scar and knotty blood vessels but it no longer hurts.

I'm surprised that your arm hurts. Is your doctor sure it's a torn tendon? If

it's near the bone you could have bursitis or tennis elbow or some repetitive

motion injury.

Thanks for the migraine info, Elaine

[Guest guest]

Hi Jody,

My daughter is on one of the new meds for irritable bowel syndrome as her

doctor seems to think that's easier than avoiding certain foods. Her stomach

recoils when she eats pizza with cheese, etc so she takes lactaid tablets and

tries to eat less dairy.

After she vomits she generally feels worse, not better, and has to lie down

in a dark room.

[Guest guest]

and Elaine,

This may not apply to your kids with migraines but I had suffered from them

most of my childhood...at age 15 because of a lot of testing for allergies

and other tests that I don't remember, I was told my migraines were allergy

induced by any and all dairy products.

When I quit drinking milk and eating cheese, stopped the cream cheese and

sour cream my headaches went away. I will get them occasionally now but

that is usually when I take the chance and eat some cheese. Cream cheese,

sour cream and ricotta will bring on major migraines that can lay me out for

2/3 days. You both might want to see if the kids are having a lot of dairy

products.

I have an 8 year old nephew who suffers from migraines also and he is now

being tested for dairy allergies.

Take care,

Jody

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[Guest guest]

my i5 yr old daughter was diagnosed with migraines at

age 8. she was never ginen anything for them. i also

have always had them. they come from my fathers side.

auto stuff from moms side. when i was at my beloved FP

last time, he told me to take the inderal(i am leery

of all pills) it would help the graves and the

headaches. i took them for less than a week. i was

sooo awful the whole time. i truely lived up to my

addy (my loving daughter set up my e-mail). i wanted

to tear everyones head off. so i stopped taking them.

oh, i'm losing track again. my wandering mind.

two years ago, my daughter dropped 30 pounds in about

a month without trying. they did a sugar level on her

but it was ok. now she's doing it again. also, her

hands are at times trembling, her energy level has

changed, and two nights ago her right eye went grey

and she ran into the chair. all too familiar. i asked

FP about checking her thyroid, and tests are set for

april 10th, but she seems to be getting worse. is she

too young for GD? she will have glucose and thyroid

levels done. any specific tests for a 15 yr old?

should i ask for the TBII and TGI? thanks

donna

--- daisyelaine@... wrote:

> Hi ,

> Plasmapheresis was used experimentally for GO for a

> while in the 80's but it

> didn't prove very promising. The problem is that

> immunoglobulins are short

> lived and constantly being produced in active GO. So

> removing one's plasma

> does reduce your immunoglobulin level, but the

> effects only last a few weeks.

>

> I'm interested in your daughter's migraines. My

> daughter also gets them and

> nothing has really helped them except beta blockers.

> She was put on beta

> blockers for elevated blood pressure at age 24 (and

> my son went on them at

> age 25, and they're both athletes, otherwise very

> healthy). While on the beta

> blockers she never had migraines. Then her blood

> pressure dropped and she was

> taken off them. The migraines are back.

>

> Before my GD diagnosis, in my late 20's when my

> symtoms were actually at

> their worst, I was treated with beta blockers for

> high blood pressure which

> mysteriously disappeared after a few years. In

> retrospect, I think the beta

> blockers kept my GD symptoms in line.

>

__________________________________________________

[Guest guest]

Debbie,

I know that overuse of steriods will weaken the tendons and cause them to

tear, my sister was on steriods for several years on a quartly timetable of

shots for a problem in her feet. The tendons had gotten so weak they were

literally dissolving, one tore and they have doen 2 surgeries to try to keep

it repaired.

Jody

_________________________________________________________________

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[Guest guest]

Hi Debbie,

Your arm injury sounds like mine, although mine was entirely my own fault for

trying to use a chain wrapped around my arm as a leash. This was in September

of 98, and the swelling only went down recently. For the most part, my arm

was mis-shapen at the inner elbow. It throbbed for several weeks, but I never

had pain later. Next time you see your doctor, you should probably let him or

her feel it.

[Guest guest]

Hi Elaine,

Add one more to the list of childhood migraines. . . I was hospitalized at

age 5, I think, for three days and after some testing they decided the

horrible headaches I was getting were migraines.

The more I read, the more I think I will have an annual thyroid panel run on

my children, including at least an initial antibody test--although I know

those aren't the be-all-end-all that we sometimes think they are.

B

Re: (unknown)

> Hi ,

> Plasmapheresis was used experimentally for GO for a while in the 80's but

it

> didn't prove very promising. The problem is that immunoglobulins are short

> lived and constantly being produced in active GO. So removing one's plasma

> does reduce your immunoglobulin level, but the effects only last a few

weeks.

>

> I'm interested in your daughter's migraines. My daughter also gets them

and

> nothing has really helped them except beta blockers. She was put on beta

> blockers for elevated blood pressure at age 24 (and my son went on them at

> age 25, and they're both athletes, otherwise very healthy). While on the

beta

> blockers she never had migraines. Then her blood pressure dropped and she

was

> taken off them. The migraines are back.

>

> Before my GD diagnosis, in my late 20's when my symtoms were actually at

> their worst, I was treated with beta blockers for high blood pressure

which

> mysteriously disappeared after a few years. In retrospect, I think the

beta

> blockers kept my GD symptoms in line.

>

>

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

> 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]

Elaine,

Doesn't lactose intolerance basically apply to the milk in the dairy

products? Is your daughter eating cheese or using the cream cheese or sour

cream? Or pizza with cheese?

My sister was told that the vomiting for whatever releases the pressure on

the blood vessels in the brain that cause the migraines (this for my 8 year

old nephew), his migraines continue to worsen until he vomits, then they

abate.

I hope your daughter finds the cause soon, they are such killers. When I

screw up and eat something like cream cheese (not done even yearly) I go to

the chiropractor for my migraines and that does help a lot too.

Take care,

Jody

_________________________________________________________________

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

[Guest guest]

Hi Donna-

Just wanted to tell you that the doctor ran a TSH test six months before I

was diagnosed with GD (I got scared because I had passed out in the street

while running). All tests came back normal so as my symptoms kept worsening

(trembling, sweating, anxiety, fast heartrate) I disregarded them as an

anxiety problem. After six months, my waking HR (150) was so fast, I could

no longer ignore it. I was retested and my TSH was unreadable and I was

diagnosed with Graves'.

The reason I'm telling you this is that if they would have caught this in me

earlier, my chances of remission would have been much higher. I knew

something was wrong but had disregarded the problem as anxiety-related since

my TSH had come back normal. My point is that TSH-only might not tell the

whole story fast enough so I think your decision to test for antibodies is a

good idea.

Take care,

Re: (unknown)

> my i5 yr old daughter was diagnosed with migraines at

> age 8. she was never ginen anything for them. i also

> have always had them. they come from my fathers side.

> auto stuff from moms side. when i was at my beloved FP

> last time, he told me to take the inderal(i am leery

> of all pills) it would help the graves and the

> headaches. i took them for less than a week. i was

> sooo awful the whole time. i truely lived up to my

> addy (my loving daughter set up my e-mail). i wanted

> to tear everyones head off. so i stopped taking them.

>

> oh, i'm losing track again. my wandering mind.

>

> two years ago, my daughter dropped 30 pounds in about

> a month without trying. they did a sugar level on her

> but it was ok. now she's doing it again. also, her

> hands are at times trembling, her energy level has

> changed, and two nights ago her right eye went grey

> and she ran into the chair. all too familiar. i asked

> FP about checking her thyroid, and tests are set for

> april 10th, but she seems to be getting worse. is she

> too young for GD? she will have glucose and thyroid

> levels done. any specific tests for a 15 yr old?

> should i ask for the TBII and TGI? thanks

>

> donna

[Guest guest]

Elaine,

She definately has something going on! Does she ever use 2 icepacks at the

onset...one for the back of the neck/skull and the other for either over the

eyes or just on the brow? It does help it a lot.

Does she have IBS or is that a guesstimate by the dr.?

Jody

_________________________________________________________________

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

[Guest guest]

Hi Elaine,

I need to correct myself, on the cluster headaches, my doctor said that

migraine/cluster headaches, were common in GD patients. Sorry about the

mistake.

I hurt my arm last summer, one of the animals was on a lead rope. I wasn't

paying attention, took off and yanked the rope along with my arm. I had a

horrible time with it, my husband wanted me to go to the doctors but I

wouldn't. It's on the inside of my arm where it bends, off to one side.

The lump is on the surface. Started bothering me when we started cutting

down our christmas trees that are over grown. Only seems to get sore when I

been doing heavy lifting. If I press on the lump real hard it hurts.

Debbie

[Guest guest]

Hi Elaine,

Mine was my fault too, wasn't paying attention. I never had such pain in my

life. Live and learn. I am glad to know the swelling will go down. I've

been having trouble with my muscles, figured out maybe I should be warming

up before I do things. And my brother told me I spend alot of time on a

smooth surface and then when I go outside I have trouble with my muscles.

We live on a farm but in Dec. and Jan. I was sick enough that was afraid to

go outside and spend much time. This was the first winter in 3 yrs. I had

been sick. When the weather got nice I went out and could hardly walk. My

brother told me about this. After my husband and I got married and we moved

to the country I started having trouble with muscle soreness I didn't know

what it was. But I had always worked on concrete and used to be athletic,

use to play womens softball, jog, ride bike, walk. But always on a smooth

surface. I started taking it slow and walking outside a little everyday,

the soreness has gone away. Anyone else experience this, what my brother

said made sense. He said people will have trouble who use a treadmill or

exercise equipment all the time. I know since this GD I am not as strong as

I use to be, so I started out with 1 lb. weights and been building up.

After 2 wks., I am doing better. My brother said walking on a smooth

surface don't give you the sideways bending or up and down in your ankles

and muscles like on the ground because it moves under your feet so you don't

use all your muscles.

Thought I would pass this along. My husband just went for his

CDL(commercial drivers license) physical and the doctor told him one mile on

the snow is like walking two miles without snow. He will be 46 yrs. this

coming Wed. is in excellent health, takes no meds. He is second to the

oldest on the fire dept. and the most fit. Wonder what happened to me?!LOL!

I wanted to pass this along, sorry about the long post. I am nervous about

all these blood test and waiting for results.

Debbie R.

[Guest guest]

Hi -

I had to think long and hard about this one. In fact, I wouldn't have

children for years because I had autoimmune disease. Then I started looking

around me at all the people that were having lots of children and were

totally unsuitable as parents. Then, of course, I started thinking that it

was ridiculous for them to be able to reproduce willy nilly while I couldn't

even have one. And their kids aren't going to be any kind of a contribution

to humanity (quite the opposite). The kicker was that autoimmune disease

does not run in our family and almost every member of my family

(immediate -which are all healthy-and extended) is healthy. I don't know

what the cause of this disease is and until they know more about it, I can't

live my life at the mercy of what ifs.

So, yes, I worry once in a while about my child having autoimmune disease.

The population problem I don't worry about. At the most, my husband and I

will reproduce ourselves. It's more likely that we'll be halving the

population for our part.

And please don't feel bad about asking that question. Heaven knows I've

asked it of myself before.

Take care,

> Dear women of childbearing age,

> Aren't you worried that your kids will have autoimmune diseases and

spend their lives in relative misery? Not to rain on your parade, but you

should see how sad it makes my mother to see us ill. (She has 4 kids, only

one seems pretty normal) I am sure we are causing more pain than joy. Not

that I wish I were never born, (well, only sometimes) but I wish I were

born in a healthy body. My own daughter is a big bowl of suffering. And

considering the overpopulation problem, and lack of affordable healthcare,

just why are we bringing these poor souls into these poor bodies? For us or

them?

> Alright, you may not want to mail me anymore, but I am being honest and

putting my thoughts out there. Now, what are yours?

[Guest guest]

Hi ,

No, what I'm saying about night shift workers has more to do with their test

results. The TSH simply isn't a true reflection of the T4 and T3 levels

because it never peaks like it should. However, because our circadian

rhyrthym is off, night shift workers are more prone to health problems. Of

course, there's some thought that our circadian rhythym is already off and

that's why we adapt to nights so well.

I don't worry about the risk of my children developing autoimmune disease. It

seems everyone contributes something from their gene pool. 20% of the

population have genes that predispose them to develop autoimmune disease. But

only 3-5% of the population develop autoimmune, so to quote Dr. Rose,

" there is much more than genes at stake here. " This is where environmental

agents, the topic of the book I'm currently writing, come into play. Even the

NIH stresses how important it is to avoid the environmental triggers of

autoimmune disease.

Good luck with your carpet. I've read that it's toxins, I'm thinking

formaldehyde, in the glue that causes problems and that less toxic glues are

now being used. You might want to ask about that. I'll add your brother to my

prayer list, Elaine

[Guest guest]

Hi Jody,

Generally her migraines start up when she's in D.C. on business which makes

me think stress plays a big part. So she takes one of her migraine meds and

then gets nauseated.

Her doctor diagnosed the IBS based on her symptoms alone. Then I figured out

the lactose part. My guess is that she has wheat intolerance like I have but

her doctor didn't bother to test her for it. I'm going to get her some of

's plum stuff. For a while, my daughter went to a Chinese herbalist who

gave her some tablets which helped. She was taking feverfew and doing better

but I don't think she kept up as she doesn't have the faith in herbs and

supplements that I do.

[Guest guest]

you don't know if there is autoimmune disease in your family. You

could have inherited it from your father. Remember testostrone is an

immune suppressant therefore

it might not be evident.

[Guest guest]

Hi ,

>>>>How do I find the in-depth list of symptoms that Terry has been working

>>>>on that are in the archives<<<<

Go to the home page, click on messages, in the purple line right above

message lists there is a white spot and a go button...type in 3706 and hit

'go' I think this is the most up to date list, though a few others have

been added periodically. If you want to see more, do a search on Terry

ding and all of Terry's messages will come up, they start with most

recent and work backwards. Or search on Symptom List for those posts. Well

worth the reading and a real eye opener, would be a wake up call to many

endos I am sure

>>>>Marijuana doesn't have them, has been studied for at least 3000 years

>>>>and works in a nicer way than xanax,... Hope you can try it, Jody.<<<<

Been there, done that...was a product of the late 60's and early 70's, and

met my husband at the first " hippy house " in our town when I was 16 <grin>

The only thing pot ever did for me was make me tired and hungry and I am

tired and hungry enough with out it I am now practicing some of the tips

shared in this group for relaxation, I started out with chanting on a

nightly basis and it made a huge difference for me, now I also meditate,

though not every day yet, haven't become that dedicated. A friend got me a

stone waterfall for Christmas and I run it most of my waking hours. Water

is a wonderful relaxation for me...even washing dishes helps, just very

soothing. I am also now doing epson salts and baking soda soaks and play

some classical music when doing so. I have learned so many great ways to

relax and de-stress. Things that I would have flown off the handle for 18

mos. ago are now like water off a ducks back *most* of the time. Anyone

that sees me now that knew me 5/10 years ago can not believe I am not the

same 'high-strung' person I use to be.

My mom did smoke pot for her glaucoma though, and when all else failed to

bring/keep her pressure down, that seemed to make the biggest

difference...though it only made her sleepy and hungry too

>>>>My daughter's migraines seem to be induced by stress, not food. She has

>>>>only had 2 in the last year, and eats whatever she wants. It seems if it

>>>>were dietary or estrogen/hormone related it would happen more.

>>>>Hmmm...<<<<

How old is your daughter? Suggest the ice packs to her the next time she

has one. Between the ice packs, quiet darkened room and an extra strength

excedrin it should help. Don't pay the price for the 'migraine excedrin' it

is the same thing as extra strength and costs twice as much! I use the

aspirn free stuff.

>>>>What is needed is a screening for Graves' before we have progressed

>>>>into the disease. I wonder if there is any such thing to test for? <<<<

I don't think there is any screening for GD...heck, they can't find it in

most of us for years as it is! Drs. and insurance companies, especially

those that are geared for wellness MUST make a full thyroid panel a standard

part of our yearly physicals, even on children when they run blood work or

when there is a history of AI in ones family.

(ELAINE, how expensive is a thyroid panel w/o the antibody tests that most

drs. don't want to do as it is?) Personnally I have no faith in just a TSH

for diagnostice puposes.

>>>>Another thing we could do is make this a reportable disease in your

>>>>state, my state, every state. Then we would have an idea of where we are

>>>>and how many of us, etc.<<<<

I doubt that will happen in our life times. GD is not a *killer* disease,

it is not a communicable disease, and though synthroid is the number 2

perscribed perscription drug in the states thyroid disease just doesn't seem

to be anyones' priority except those that suffer from it. Wait until you

read the symptoms list that Terry put together and compare it to the

*symptoms* on most med pages or from most drs. office!

>>>>GD would get funding if there were a lot of known voters, I mean

>>>>sufferers out there. Cancer is a reportable disease, for instance. Then

>>>>we have a better chance of pinpointing environmental factors, too.

>>>>Launch a letter writing campaign to representatives to make it the law.

>>>>I think the internet actually makes that possible these days.<<<<

The research definately needs funding for all thyroid diseases, for all auto

immune diseases...how to go about getting it is anyones guess, unless we,

those that have particular diseases educate as many as possible, including

our drs. The internet has brought so many people together that never would

have been before. I think it scares the physicians that we are 'comparing

notes' and research, and papers, and symptoms, and treatment (or lack of).

I have now had 3 drs. tell me " you can't trust what you read on the

internet, it is full of lies " I shoot back...oh is the AMA site lies, is the

Medscape lies, is the CDC lies, is the FDA lies? It generally shuts them

up.

>>>>Look at medical marijuana.<<<< Well, though legislation has been

>>>>passed in many states to make this acceptable and legal...federal law

>>>>still prohibits its' use in those states...so it is still federally

>>>>illegal. I do believe there are state lawsuits against federal agencies

>>>>challenging their right to prosecute on a federal level what is legal on

>>>>a state level, though no decisions have been made. The feds will tie

>>>>this up for many more years.

>>>>ps. do I seem a little hyper to you today? I have never known anyone who

>>>>might be able to tell if I am acting like I am wired on T3 before.<<<<

LOL...maybe a little bit, but don't we all get that way from time to time.

Take care

Jody

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[Guest guest]

Hi -

It would have turned up in some female along the way if this was true.

There is no autoimmune disease from Great-grandparents (who I knew) both

paternally and maternally in my family on my dad's side. None in my

grandparents on my dad's side. My aunts and uncles too and all my cousins

don't have anything. They're the healthiest bunch I've ever met. Neither

of my sisters has autoimmune disease either.

Men get Graves' and other autoimmune diseases too. I think it would have

shown up somewhere along the line.

I only have one cousin on my mom's side with thyroid disease and hers was

toxic multinodular goiter. No autoimmune disease involved there.

I have a very big family with dozens of cousins in it. You'd think

autoimmune disease would have turned up somewhere. And no, I still can't be

positive, but there's no evidence of it anywhere. And until they find proof

of what causes it, I will not base my life on a maybe.

Take care,

Re: (unknown)

> you don't know if there is autoimmune disease in your family. You

> could have inherited it from your father. Remember testostrone is an

> immune suppressant therefore

> it might not be evident.

>

>

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

> 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]

Hi Elaine-

Jumping in here. That's what I think might be going on with those of us

that don't have autoimmune disease in our family. The predisposition was

there and I was the only one with the misfortune of finding the " right

trigger " at the " right time " .

Did you read that Medscape article on MS relapse yet? They didn't find a

correlation between vaccinations and MS relapse but, before they studied

this, there was enough concern to warrant them suspending a Hep B

vaccination program in France when there were new reports of MS onset and

relapse after an extensive immunization program.

So interesting. So what's the " trigger " if that's the route and why would

there be some that have a family history of GD on their mom's side (with no

history on dad's side) if dad's GD genes are imprinted and it's inherited

paternally? Or do maybe some dad's have imprinted genes at that location

while other's don't? Fascinating stuff to think about.

Now, I'm on a roll. What if some dad GD genes are imprinted and some aren't

so that's why some of us can get it from mom's side and that they need

triggers to actually cause disease? Whew! I'm stopping now. This could go

on forever.

Take care,

" I don't worry about the risk of my children developing autoimmune disease.

It

> seems everyone contributes something from their gene pool. 20% of the

> population have genes that predispose them to develop autoimmune disease.

But

> only 3-5% of the population develop autoimmune, so to quote Dr.

Rose,

> " there is much more than genes at stake here. " This is where environmental

> agents, the topic of the book I'm currently writing, come into play. Even

the

> NIH stresses how important it is to avoid the environmental triggers of

> autoimmune disease "

..

[Guest guest]

I am 48 years, I have 5 children, two grandchildren and a new one on the way.

I have just recently found out I have Graves Disease but I would have had all

five of my kids even if I had GD before they were conceived. If any of my

children develop this GD disease they will have to deal with it as we all

have to deal with it. I'll admit it isn't pleasant but I sure am not blaming

my parents or grandparents for causing me to have it. I do not want my kids

to get it but I sure wouldn't have given up on the chance to have my great

family because of a slight chance one of them may develop it. Because we have

it if our children show the slightest symptoms at least we know what tests

they need and it can be dealt with right away. Autoimmune disease don't

really run in my family, with the exception of my Mom who developed vitiligo

about 10 years ago. I now have it and I sure don't blame her.

[Guest guest]

Hi -

No. You didn't. But saying that autoimmune disease is only genetic makes

those of us who decide to have children irresponsible.

I had enough of a struggle deciding to have children (which adds to the

trouble I had trying to get pregnant with even one) when I believed only

part of it was genetic.

Take care,

Re: (unknown)

> I did not ask you to base your life on a maybe. Of course men get auto

> immune disease

> but look at the ratios even on this board. And look at the amount of

> time and effort it took to get diagnosis for many of these people.

>

>

>

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

> 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.

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

>

>