new to group

[Guest guest]

Ralph~

Welcome to the group. You've come to the right group. Feel free to ask

questions, some one is bound to know the answer. =-) Take care!

rgsmith22 rgsmith22@...> wrote: Hello All, I am new to the group.I have

just been diagnosed with Fibromyalgia and looking for knowledge about it. I am a

45 year old male and gulf war vet, from virginia. I hope all is having a great

day. Ralph

[Guest guest]

Welcome to the group Ralph. Hopefully you can find some answers here

or even just someone to listen.

Koala-t hugs,

Cathy

[Guest guest]

Welcome to the group Ralph. Hopefully you can find some answers here

or even just someone to listen.

Koala-t hugs,

Cathy

[Guest guest]

Hi Jody, I too will introduce myself and help you with your concerns.

I was diagnosed in the summer of 2001 and sceduled for RAI. I

cancelled after readying so many horror stories for 3 months of

everyone who has gone through RAI. I have not heard one testimony of

anyone who is glad they did. So I did nothing for a year, but take

my Atenolol to control the palpatations. I felt great until a couple

months ago, and started reading the forums on about.com again and

found Elaine there.

I had gone through accupuncture, and chinese meds tea and other

alternative med but the Atenolol was not working. The palpatations

are serious and I had to do something.

I was sooo relieved to find Elaine and her help has been a God

send. She had RAI and wish she had not. You should research with

all your heart and avoid RAI with all your might. Give Elaine

's " Graves' Disease A Practical Guide " book to your Endo after

you read it, to get educated. RAI has been done for over 50 years

and it is time for a better way. 99% of all Doctors (mine encluded)

do not know any better, and we have to educate them. I am soooo glad

I waited and listened to my better judgement. On 30mg of Tap since

Jan.4th. and looking forward to remission. Blessings K

> Hi all

> I am coming out of lurkdom to introduce myself.

> I , what other choices there might be, etc. I

> am wondering why I would need RAI if my numbers are looking so

good.

> If anyone can give me any suggestions they would be greatly

> appreciated.

> Thanks

> Jody2

[Guest guest]

Hi Jody, I too will introduce myself and help you with your concerns.

I was diagnosed in the summer of 2001 and sceduled for RAI. I

cancelled after readying so many horror stories for 3 months of

everyone who has gone through RAI. I have not heard one testimony of

anyone who is glad they did. So I did nothing for a year, but take

my Atenolol to control the palpatations. I felt great until a couple

months ago, and started reading the forums on about.com again and

found Elaine there.

I had gone through accupuncture, and chinese meds tea and other

alternative med but the Atenolol was not working. The palpatations

are serious and I had to do something.

I was sooo relieved to find Elaine and her help has been a God

send. She had RAI and wish she had not. You should research with

all your heart and avoid RAI with all your might. Give Elaine

's " Graves' Disease A Practical Guide " book to your Endo after

you read it, to get educated. RAI has been done for over 50 years

and it is time for a better way. 99% of all Doctors (mine encluded)

do not know any better, and we have to educate them. I am soooo glad

I waited and listened to my better judgement. On 30mg of Tap since

Jan.4th. and looking forward to remission. Blessings K

> Hi all

> I am coming out of lurkdom to introduce myself.

> I , what other choices there might be, etc. I

> am wondering why I would need RAI if my numbers are looking so

good.

> If anyone can give me any suggestions they would be greatly

> appreciated.

> Thanks

> Jody2

[Guest guest]

In a message dated 1/11/2003 6:54:58 PM Eastern Standard Time,

ljlund@... writes:

> . I

> am wondering why I would need RAI if my numbers are looking so good.

Welcome, Jody2! (Can we handle 2 Jodys? Just kiddin'!) That's just it...if

it ain't broke, don't fix it! You have responded very quickly to the meds!

You are on the only treatment for GD that offers the possible outcome of

remission. Your doc will tell you that you can only stay on the meds for 2

years, and that is not true. You can stay on them until you reach remission

or a lifetime if necessary....but proper dosage and monitoring is important.

I personally think RAI is barbaric!

God bless,

http://hometown.aol.com/lisareynolds64/myhomepage/personal.htmlhttp://ho\

metown.aol.com/lisareynolds64/myhomepage/personal.html

[Guest guest]

In a message dated 1/11/2003 6:54:58 PM Eastern Standard Time,

ljlund@... writes:

> . I

> am wondering why I would need RAI if my numbers are looking so good.

Welcome, Jody2! (Can we handle 2 Jodys? Just kiddin'!) That's just it...if

it ain't broke, don't fix it! You have responded very quickly to the meds!

You are on the only treatment for GD that offers the possible outcome of

remission. Your doc will tell you that you can only stay on the meds for 2

years, and that is not true. You can stay on them until you reach remission

or a lifetime if necessary....but proper dosage and monitoring is important.

I personally think RAI is barbaric!

God bless,

http://hometown.aol.com/lisareynolds64/myhomepage/personal.htmlhttp://ho\

metown.aol.com/lisareynolds64/myhomepage/personal.html

[Guest guest]

Hi Jody,

If your numbers are good, there is no reason for you to have RAI.

GD is caused by thyroid antibodies that stimulate thyroid cells to produce

excess thyroid hormone.

When your immune system calms down and stops producing these antibodies, you

are in remission.

The idea with meds is to take them until you are no longer producing these

antibodies. This is easily verified with a blood test. Take care, Elaine

[Guest guest]

Hi Jody,

If your numbers are good, there is no reason for you to have RAI.

GD is caused by thyroid antibodies that stimulate thyroid cells to produce

excess thyroid hormone.

When your immune system calms down and stops producing these antibodies, you

are in remission.

The idea with meds is to take them until you are no longer producing these

antibodies. This is easily verified with a blood test. Take care, Elaine

[Guest guest]

Hi Jody 2

Your endo is considering the possibility that even if you do reach

remission, you could relapse. They don't have to worry about monitoring us

as closely (even if we are in remission) if they ablate the thyroid. I

think that risk should be up to the patient, not the doctor. If I had a

chance again, I would take that risk. I'd even stay on ATDs indefinitely

(as long as I tolerated them well) if I couldn't reach remission.

This brings up another problem. Often, the doctors will tell you that you

cannot tolerate the ATDs because of a rash (allergy) or because your liver

enzymes are rising (liver damage). Both of these aren't necessarily true.

Graves', in itself, causes raised liver enzymes so you need to have a

baseline before you start ATDs. The rash can also be a part of Graves'. If

it is because of the ATDs this can often be remedied by a medication

reduction which the doctor often does after the 1st 6 weeks anyways.

I had RAI over 15 years ago and will always regret it. Since thyroid

hormone is used by every cell in the body, a problem with the replacement

can manifest itself in many different ways. They tried to treat all my

symptoms separately and it took them 11 years to figure out what was wrong

with me because of their insistence that thyroid levels are fine as long as

TSH is in the normal range. Many doctors are changing their attitude and

are trying to be more proactive about how they treat their post-RAI patients

but it still isn't as good as having your own thyroid gland.

Graves' is an autoimmune disease in which your immune system views your

thyroid gland as foreign and attacks it. Permanently treating the thyroid

does nothing to address this. ATDs are temporary and do address it

indirectly (they suppress the immune system as they prevent the manufacture

of thyroid hormone).

Anyhow, RAI isn't the panacea that doctors often make it out to be.

Take care,

dx & RAI 1987 (at age 24)

> I

> am wondering why I would need RAI if my numbers are looking so good.

[Guest guest]

Hi Jody 2

Your endo is considering the possibility that even if you do reach

remission, you could relapse. They don't have to worry about monitoring us

as closely (even if we are in remission) if they ablate the thyroid. I

think that risk should be up to the patient, not the doctor. If I had a

chance again, I would take that risk. I'd even stay on ATDs indefinitely

(as long as I tolerated them well) if I couldn't reach remission.

This brings up another problem. Often, the doctors will tell you that you

cannot tolerate the ATDs because of a rash (allergy) or because your liver

enzymes are rising (liver damage). Both of these aren't necessarily true.

Graves', in itself, causes raised liver enzymes so you need to have a

baseline before you start ATDs. The rash can also be a part of Graves'. If

it is because of the ATDs this can often be remedied by a medication

reduction which the doctor often does after the 1st 6 weeks anyways.

I had RAI over 15 years ago and will always regret it. Since thyroid

hormone is used by every cell in the body, a problem with the replacement

can manifest itself in many different ways. They tried to treat all my

symptoms separately and it took them 11 years to figure out what was wrong

with me because of their insistence that thyroid levels are fine as long as

TSH is in the normal range. Many doctors are changing their attitude and

are trying to be more proactive about how they treat their post-RAI patients

but it still isn't as good as having your own thyroid gland.

Graves' is an autoimmune disease in which your immune system views your

thyroid gland as foreign and attacks it. Permanently treating the thyroid

does nothing to address this. ATDs are temporary and do address it

indirectly (they suppress the immune system as they prevent the manufacture

of thyroid hormone).

Anyhow, RAI isn't the panacea that doctors often make it out to be.

Take care,

dx & RAI 1987 (at age 24)

> I

> am wondering why I would need RAI if my numbers are looking so good.

[Guest guest]

-----BEGIN PGP SIGNED MESSAGE-----

Hash: SHA1

Kim Hammon wrote:

>

> My

> eyes are very swollen and my legs hurt does anyone else have this

> problem?

They are classic hypothyroid symptoms (too little thyroid hormone),

although for the eyes you need to distinguish fluid (such as you might

get after a nights sleep, but that doesn't seem to drain away as

readily, which can be pure hypothyroid) from other eye problems (which

can also induce the same puffiness just to add to the confusion - sorry).

T3 and T4 are thyroid hormones, T3 has three Iodine atoms in the

molecule, you can guess how many Iodine atoms T4 has.

It is important following RAI ablation to measure serum free T4 and

serum free T3 (fT4 and fT3), as these are the actual usuable amounts of

thyroid hormone in your blood.

A common mistake is to measure TSH only, which lags behind the fT4 and

fT3 tests, and by the time it has risen, patients may have puffy eyes,

painful legs, and possibly also depression and weight gain.

Usually it is recommended to wait 6 months or a year from having RAI to

getting pregnant, the main reason for this is that RAI is repeated in a

substantial proportion of patients, but can't be used if you are

pregnant. Secondary reasons include; residual radioactivity (but this is

mostly gone withing 6 to 8 weeks after treatment) and getting your

hormone levels reasonably stable (which can take from weeks to never

depending how lucky you are).

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[Guest guest]

> Hi I'm Kim and I'm new to this group. . . . I've only known that

I've had Graves for about four months and the Dr gave me radioactive

treatment I was so afraid and trusted him, I did it because we want

another child and I thought that I was doing the right thing. I'll be

getting more blood work done in a few days I'll post my results and

see if someone can help me understand. My eyes are very swollen and

my legs hurt does anyone else have this problem? Thanks Kim

>

Hi Kim, and welcome,

As Simon mentioned, it sounds like you've become hypothyroid and need

to start on replacement hormone. Do post your test results. If your

TSH reading is much over 2.0 (3.04 is the new top limit), it

definitely means you're hypothyroid. Sometimes TSH is slow to rise,

though, so as Simon mentioned your doc should also tests Free T4 and

Free T3 to make sure they're not low (swollen eyes and leg aches do

sound hypo, and this is to be expected after the treatment).

You should also find a an eye doctor who treats thyroid eye disease

and get a baseline checkup. Many people find that taking flaxseed

oil, from the health food store, 2 tablespoons a day in yogurt or

cottage cheese, helps with the eye inflammation. You aslo need to use

lots of artificial tears to keep your eyes moist.

You've found an experienced group and can get lots of support here.

Graves' and, later, pregnancy, do best with a relaxed attitude. This

would be a good time to start practicing some stress reduction, like

deep breathing or yoga.

You did your best in choosing your treatment, and doctors

overwhelmingly opt for radiation. (One of my endo's partners had

Graves' and assured me that this was the treatment I would choose,

just as she did.)

Do make sure you get bloodwork done ASAP--this is the time to start

supplementing. And post your labs results, woith reference ranges,

when you get them. Someone here will give advice when you do.

Best wishes,

[Guest guest]

> Hi I'm Kim and I'm new to this group. . . . I've only known that

I've had Graves for about four months and the Dr gave me radioactive

treatment I was so afraid and trusted him, I did it because we want

another child and I thought that I was doing the right thing. I'll be

getting more blood work done in a few days I'll post my results and

see if someone can help me understand. My eyes are very swollen and

my legs hurt does anyone else have this problem? Thanks Kim

>

Hi Kim, and welcome,

As Simon mentioned, it sounds like you've become hypothyroid and need

to start on replacement hormone. Do post your test results. If your

TSH reading is much over 2.0 (3.04 is the new top limit), it

definitely means you're hypothyroid. Sometimes TSH is slow to rise,

though, so as Simon mentioned your doc should also tests Free T4 and

Free T3 to make sure they're not low (swollen eyes and leg aches do

sound hypo, and this is to be expected after the treatment).

You should also find a an eye doctor who treats thyroid eye disease

and get a baseline checkup. Many people find that taking flaxseed

oil, from the health food store, 2 tablespoons a day in yogurt or

cottage cheese, helps with the eye inflammation. You aslo need to use

lots of artificial tears to keep your eyes moist.

You've found an experienced group and can get lots of support here.

Graves' and, later, pregnancy, do best with a relaxed attitude. This

would be a good time to start practicing some stress reduction, like

deep breathing or yoga.

You did your best in choosing your treatment, and doctors

overwhelmingly opt for radiation. (One of my endo's partners had

Graves' and assured me that this was the treatment I would choose,

just as she did.)

Do make sure you get bloodwork done ASAP--this is the time to start

supplementing. And post your labs results, woith reference ranges,

when you get them. Someone here will give advice when you do.

Best wishes,

[Guest guest]

Hi Kim,

I had graves when I was a teenager and it's active again. Very

active..ugh. My endo is talking about RAI..and since you have gone

through this, I would love to talk with you. Email me at

ncmom2girls@... please!

Thanks so much and I wish you well soon!!

> Hi I'm Kim and I'm new to this group. I'm overwhelmed with all of

this info that I've been reading. I don't even know what my T3 and T4

are. I've only known that I've had Graves for about four months and

the Dr gave me radioactive treatment I was so afraid and trusted him,

I did it because we want another child and I thought that I was doing

the right thing. I'll be getting more blood work done in a few days

I'll post my results and see if someone can help me understand. My

eyes are very swollen and my legs hurt does anyone else have this

problem? Thanks Kim

>

>

[Guest guest]

Hi Kim,

I had graves when I was a teenager and it's active again. Very

active..ugh. My endo is talking about RAI..and since you have gone

through this, I would love to talk with you. Email me at

ncmom2girls@... please!

Thanks so much and I wish you well soon!!

> Hi I'm Kim and I'm new to this group. I'm overwhelmed with all of

this info that I've been reading. I don't even know what my T3 and T4

are. I've only known that I've had Graves for about four months and

the Dr gave me radioactive treatment I was so afraid and trusted him,

I did it because we want another child and I thought that I was doing

the right thing. I'll be getting more blood work done in a few days

I'll post my results and see if someone can help me understand. My

eyes are very swollen and my legs hurt does anyone else have this

problem? Thanks Kim

>

>

[Guest guest]

Hi Kim,

Welcome to the group. Some people become hypothyroid fairly quickly after

RAI. You'll need to have your FT4 and FT3 levels checked to see if it's time

to start thyroid replacement hormone. Both high and low thyroid hormone

levels can cause eye symptoms, and some people develop a congestive form of

eye disease after RAI. You may want to also check with an ophthalmologist to

see if you need treatment for this.

Try to start keeping a log of your lab results, noting how you feel when your

blood is drawn. This will help in figuring out what dose of replacement

hormone works best for you. Take care, elaine

[Guest guest]

Hi Kim,

Welcome to the group. Some people become hypothyroid fairly quickly after

RAI. You'll need to have your FT4 and FT3 levels checked to see if it's time

to start thyroid replacement hormone. Both high and low thyroid hormone

levels can cause eye symptoms, and some people develop a congestive form of

eye disease after RAI. You may want to also check with an ophthalmologist to

see if you need treatment for this.

Try to start keeping a log of your lab results, noting how you feel when your

blood is drawn. This will help in figuring out what dose of replacement

hormone works best for you. Take care, elaine

[Guest guest]

In a message dated 8/27/2003 4:40:46 AM Eastern Daylight Time,

RSS-Support writes:

>

> Subject: New to group

>

>

Hi Jackie -

I believe I remember you from the Preemie-L listserv (I've been very involved

in the non-profit end of the group). My son Conor was a 24 weeker born at

1lb 3oz. We suspected he had RSS at the age of three but only just got an

official diagnosis now at the age of 7-1/2.

We have just started GH therapy last month and so far it is going ok.

As for shoes, I know it's hard to get special shoes for special needs. Have

you checked with Craft Shoes? They are a specialty shoe retailer.

Welcome to the list.

, mom to Conor

[Guest guest]

Hi Jackie,

Welcome to the listserve! I can answer one of your questions.

Nordstrom will sell you two different size shoes. They have a web

site as well if there is not a store near you. www.nordstrom.com

Mom to Colin (RSS, g-tube) and Hayden - almost 33 mo. twins

Expecting #3 on 1/3

[Guest guest]

Hi Jackie,

Welcome to the listserve! I can answer one of your questions.

Nordstrom will sell you two different size shoes. They have a web

site as well if there is not a store near you. www.nordstrom.com

Mom to Colin (RSS, g-tube) and Hayden - almost 33 mo. twins

Expecting #3 on 1/3

[Guest guest]

Hi Jackie-

Welcome to the group! I don't have any ideas for the shoe problems

but hopefully someone else will post. Most of the time someone on

the listserve has an answer for you.

I respect your decision to not use the growth hormone and don't want

you to think that I am trying to persuade you differently. I am

interested in your comments about the ght. My son has been on ght

for one year but I realize everyone has to make their own decision

about it. I am just wondering what side effects you are referring

to? One of the main reasons we decided to try ght is that the side

effects are very minimal according to the information I have been

provided. ALso, my son needed to increase his muscle tone which the

ght helps with.

Again, welcome to the group.

F.

> Hello,

>

>

>

> I would like to introduce myself. I am Jackie mother to

who is 4

> going to be 5 next month.. She was a preemie at 7 months born at

only one

> pound 10 ounces and 12 inches long. We had a rough ride in the

NICU and the

> first two years after with multiple infections, mostly lung etc.

When she

> was around 18 months to two the diagnosis of RSS was made after a

visit to

> the geneticist and several tests as well as the endocrinologist.

She now is

> 39 " and 26 pounds. She is very petite but eats like a horse!!!!

She has

> the asymmetry of her legs but no real leg length discrepancy. She

has the

> blue sclerae, curved fifth digits. We have to have kidney

ultrsounds q6

> months. All in all this is not the worst that could have ever

happened,

> however, I worry all the time about her being made fun of because

of her

> short stature, her legs being different sizes around etc. My

family tells

> me I am the only one who notices because I am looking for it but I

don't

> know it is pretty obvious.

>

>

>

> Her father and I also made the decision not to give her growth

hormone

> injections as it just didn't make me feel comfortable with all of

the side

> effects and the benefits did not out weigh the risks for us. I

don't know

> if I would have come to the same decision if this was a boy child

however.

>

>

>

> Our problem now is getting shoes, her one foot needs a size 9 one

needs a

> 9.5. I knew of a website at one time but have since forgotten.

Anyone

> with info and support please write!!! Also any new treatments out

there

> that I am unaware of besides the growth hormone .

>

>

>

> Thanks for having a support group for this as there is no one else

I know

> of with this syndrome.

>

>

>

> Jackie Aguilar

>

> Database Administrator

>

> SwedishAmerican Hospital

>

> 1401 E. State Street

>

> Rockford, I L 61104

>

>

>

>

>

>

[Guest guest]

Hi Genell,

welcome,I'm new too. I had a lap band on 25th nov 2003 and i'm

waiting to for the time when i can try too. I also have pcos. I'm

30yrs of age, I don't have kids yet. Good to hear from you.

congraduations with that weight loss. Hope next year brings much joy

cathy

[Guest guest]

,

Welcome to the group and congrats on weight loss! Good luck on your quest to

have a child, the women here have been a great help to me and I'm sure that any

question you have one of the wonderful ladies here will be able to give you some

guidance.

Axelrod

New To Group

Hi Everyone! My name is , and I had Lap RNY on 7/9/03 -96lbs. I am

not currently pregnant, but I am hoping to have kids in the future. I want to

do some research first so I will be well prepared. Any info, suggestions, etc

is welcome! Thanks!

-

[Guest guest]

Welcome !

You are wise to do research prior to ttc after wls! Welcome to the

group and hope we canhelp!

Sharon

Lap RNY 12-13-01

378/212/160

29 weeks pregnant with 1st child -- It's a boy!!

> Hi Everyone! My name is , and I had Lap RNY on 7/9/03 -

96lbs. I am

> not currently pregnant, but I am hoping to have kids in the

future. I want to

> do some research first so I will be well prepared. Any info,

suggestions, etc

> is welcome! Thanks!

> -

>

>

>