Re: Allow myself to introduce myself

[Guest guest]

Hi ,

Thanks so much for the warm welcome. It truly was more than a bit of a shock

to hear myself associated with anything that contains the word " Disease. "

I've not heard of Graved Disease.....is that what they thought you had at first?

I can see you have at least a healthy sense of humor! LOL Here's hoping that

laughter works it's magic on all of us. :-)

Chat with you later and have a wonderful holiday weekend!

[Guest guest]

Hi ,

Glad you found the group. Graves' disease certainly can seem overwhelming at

first, but having a good doctor will make your journey easier. You don't have

to be treated by an endocrinolgist if you have an internist or Family Practice

doctor who is familiar with treating GD. Best to you, Elaine

[Guest guest]

Hi ,

You will learn a lot here! I was officially diagnosed by my first

endocrinologist with a blood test for the antibodies present in Graved

Disease. Welcome to the group and sorry you had to join us. But misery loves

company so welcome to the misery!

in MA, USA

Diagnosed w/Graves, March 1997

Glad I've refused RAI Treatment and Surgery!!!

On lose dose of PTU (was in remission for three years)

Borderline normal thyroid levels

[Guest guest]

-----Original Message-----

From: wasteoftym@...

Thanks so much for the warm welcome. It truly was more than a bit of a shock

to hear myself associated with anything that contains the word " Disease. "

I've not heard of Graved Disease.....is that what they thought you had at

first?

Yes, when I first went to my primary care they thought I had Graves Disease.

They did the thyroid uptake scan, which just showed an overall overactive

thyroid. So next step was to visit endo #1. My second visit there he said I

should just go ahead and do the RAI procedure that would kill off my

thyroid. Just a few months into the disease and still learning about it I

was very uncomfortable with a procedure that was that final. I asked him if

there was a chance of getting into remission and he said " yes, there's

always a chance " very sarcastically. A few sentences later he commented on

my weight by saying " I have a new rule for you, if it tastes good don't eat

it " . That was my second and last visit to him.

Sorry, got off on a tangent there. There's a really good book on this

disease. Very technical but written by a woman on this list! It's called

" Graves Disease, a Practical Guide " and it's written by Elaine . Elaine

is one smart lady and knows this crummy disease inside and out! She's also

the best lab-work interpreter around!

Stick around here and you'll learn more than you'd like to know about Graves

Disease.

in MA, USA

Diagnosed w/Graves, March 1997

Glad I've refused RAI Treatment and Surgery!!!

On lose dose of PTU (was in remission for three years)

Borderline normal thyroid levels

[Guest guest]

-----Original Message-----

From: wasteoftym@...

Thanks so much for the warm welcome. It truly was more than a bit of a shock

to hear myself associated with anything that contains the word " Disease. "

I've not heard of Graved Disease.....is that what they thought you had at

first?

Duh! I just got it , real quick there , real quick!! LOL!!

in MA, USA

Diagnosed w/Graves, March 1997

Glad I've refused RAI Treatment and Surgery!!!

On lose dose of PTU (was in remission for three years)

Borderline normal thyroid levels

[Guest guest]

Hi :

It's great that your doctor may have caught the problem early. I'm in

SoCal too, West Los Angeles - if you are from my area and find

yourself in need of an endo, I've been through a lot of them!

Happy to see you are researching and keeping an eye out for yourself.

I hope you continue this way, and especially hope you will research

thoroughly before starting any recommended treatment, especially

irradiating your thyroid (RAI). This treatment was strongly

recommended to me, and I opted for medication instead, and am VERY

glad of it. One of the biggest lessons I learned was to take charge

of my own health care, and looks like you are getting a great start.

Best regards,

> Hi All,

>

> Guess I should formally make everyone's acquaintance since I signed

up last

> night.

[Guest guest]

Hi and welcome,

You have gotten some good replies, and seem to be pretty adept at finding

all the goodies (if I can call it that) about our friendly disease, and I

assume you've found all the stuff in the Files section on the home page

already and read it. If not, there's plenty there to contemplate.

One thing that hasn't been mentioned, is that there is an alternative to

ingesting radioactive iodine to test whether you have GD. That is getting

antibody tests and an untrasound of your thyroid. I had the scan done

myself, before I knew that there were alternatives. It didn't seem to affect

me adversely, but some people here believe that the radio active iodine used

in the scan may have aggravated their condition.

Terry

> From: wasteoftym@...

> Reply-To: graves_support

> Date: Fri, 23 May 2003 20:11:15 EDT

> To: graves_support

> Subject: Allow myself to introduce myself

>

> Hi All,

>

> Guess I should formally make everyone's acquaintance since I signed up last

> night.

> :-) My name is , and I am a 44 year old female, married with 3

> children (2 still at home), living in Southern California. Haven't had any

> real

> major health issues my whole life long, until after doing some blood work as

> part of an investigation that involves a current case of tinnitus (ringing in

> the ears), my doctor called and told me last week that my thyroid is

> overactive and that he wanted to run another blood test to look into things

> and find

> out what's up.

>

> Being the anal little computer lovin' gal that I am, I immediately upon

> hanging up the phone with him went online to see exactly what that could mean,

> and

> for the first time found the terms " hyperthyroidism " and Graves' Disease. Just

> the quick look over that I saw of these things online convinced me that for

> the sake of my nerves I should probably stop reading and wait for a further

> report back from my Dr.! LOL So I tried my best not to think about it for the

> past week, apart from praying about it.

>

> Just this past Wednesday my Dr. called back and said that I had Graves'

> Disease and that he wanted me to go in and see the internist as soon as

> possible so

> I could discuss treatment options. He did say that it looked like it was just

> starting the condition; which provided me with a bit of comfort at the time.

>

> Back online I went and while I have spent about 4 hours so far over the past

> 2 days surfing around and finding out more about what exactly this means for

> me and my family, I know I really don't know much at all. So I was very glad

> to

> stumble across a a yahoo group given as a link in one of the many sites I've

> scouted around on. I'm a big fan of yahoo groups and belong to a bunch of

> them, mostly rubber stamping related. Thank you all for being here, and I see

> I've

> gotten some emails already from the group, although I haven't had a chance to

> read them as of yet due to the heavy web surfing I've been doing. In good

> times and bad, then things that bring us pleasure or the things that want to

> drag

> us down, it helps so much to have others to share it with, and I appreciate

> this group and hope to not only receive benefits by being here, but to give

> benefits where and when I can to others as well.

>

> I saw the Internist today, and am much encouraged. Based on her looking at

> the initial blood work and her examination of me, she isn't convinced as yet

> that I have Graves' Disease; or if I do it is an extremely mild form of it.

> She

> has ordered me further blood tests to check my THS levels and T3 levels again,

> as well as looking at the T4. (I know a wee bit of the lingo already, even if

> I don't know exactly what it all means as yet.) I'm also scheduled for a

> radiological uptake on my thyroid for next week, so she can get a better idea

> of

> what it doing and where and if it's secreting or holding onto the things it

> shouldn't. She says I don't really show any of the physiological signs of

> Graves'

> Disease, which is also encouraging. Basically she didn't guarantee that it

> would stay mild, but said that unless the additional tests showed something

> really out of whack, she predicts that she'll just want to monitor me and keep

> an

> eye on things with my thyroid.

>

> All in all, she seemed very knowledgeable about it, and stated that she sees

> quite a few women who have thyroid problems. My darling hubby (who like the

> rock he is went with me to my appointment) was very impressed with her. So

> while

> I could see an endocrinologist, I guess I feel at this stage of the game that

> it's too soon to start: a. Panicking with a capital P and b. rope in the

> specialists. We did discuss some future eventualities, and I mentioned that I

> wasn't comfortable with the whole treatment of burning my thyroid away and

> would

> rather start with medications if and when treatment is indicated and she was

> open to that.

>

> So that's where I stand at the moment. I hope everyone here has had the best

> of all possible days. From what I could gather from reading some folks stories

> who have struggled or are struggling with this condition, a lot of it is

> about trying to live life to the best of your abilities day by day and moment

> by

> moment. My prayers for all you that you will succeed in that, but if not, to

> find hope and encouragement wherever you are seeking it, and to try again

> tomorrow.

>

> Looking forward to getting to know you all and my apologies if this was an

> excessively wordy introduction. I'm a talker I admit it, but also I hope a

> good

> listener too. God bless,

>

>

>

>

>

[Guest guest]

In a message dated 5/23/2003 6:08:55 PM Pacific Daylight Time,

lisa.ohearn@... writes:

> Just a few months into the disease and still learning about it I

> was very uncomfortable with a procedure that was that final. I asked him if

> there was a chance of getting into remission and he said " yes, there's

> always a chance " very sarcastically. A few sentences later he commented on

> my weight by saying " I have a new rule for you, if it tastes good don't eat

> it " . That was my second and last visit to him.

>

Hey ,

Boy, at least you find out what a jerk this doctor was at the beginning of

your visits with him. Ye Gods what a dreadful bedside manner! Hope your current

doc is more sympathetic and in tune with what you need to battle your

condition.

I actually have already ordered that book you mentioned from

Amazon.....should be here in a couple of days I hope. Seems everyone sings the

praises of Ms.

Elaine so I'm looking forward to wading my way thru it. :-) I also got one

called " Graves' Disease In Our Own Words " that seemed popular with the reviewers

as well. Knowledge is power - so bring it on! LOL

Have a happy holiday weekend.

[Guest guest]

In a message dated 5/23/2003 7:57:56 PM Pacific Daylight Time,

daisyelaine@... writes:

> Hi ,

> Glad you found the group. Graves' disease certainly can seem overwhelming at

>

> first, but having a good doctor will make your journey easier. You don't

> have

> to be treated by an endocrinologist if you have an internist or Family

> Practice

> doctor who is familiar with treating GD. Best to you, Elaine

>

Thanks for the welcome Elaine. :-) I can already see one benefit from my

newfound condition is that I'll be meeting lots of nice and interesting new

people.

The internist I saw did seem extremely knowledgeable.......at least compared

to me! LOL At the very least it's a case of so far so good. I'll have to see

how she reacts when I request copies of my lab work when I next see her at the

end of June. Although I don't really know what the numbers mean yet, from what

I've read it seems to be a good idea to be able to reference them myself so I

can get familiar with how those numbers are reflected in my day to day life

and manner of living. Hopefully it won't be an issue.

Have a wonderful and relaxing weekend!

[Guest guest]

In a message dated 5/24/2003 12:36:33 PM Eastern Daylight Time,

wasteoftym@... writes:

> A few sentences later he commented on

> > my weight by saying " I have a new rule for you, if it tastes good don't

> eat

> > it " . That was my second and last visit to him.

>

That is terrible. Let's gang up on him.

When I complained about all the weight gain, my Endo told me to expect to put

on more weight when I start the med's.

I had RAI April 29th because of nodules.

My neighbor is hypo and when she talked to her Endo about all the weight

gain, she told her to " eat less food. " Ouch!

I made my appointment for the eye specialist. I was told that the exam will

take about 2 hours. Wow! That sounds like it should be a really good check up,

time wise anyway.

Betty

PS If your are expecting an answer from me, and you don't get it, please

email me back with a friendly reminder.

" To err is human; to forgive, divine. "

[Guest guest]

In a message dated 5/23/2003 8:29:25 PM Pacific Daylight Time,

aldente@... writes:

> You have gotten some good replies, and seem to be pretty adept at finding

> all the goodies (if I can call it that) about our friendly disease, and I

> assume you've found all the stuff in the Files section on the home page

> already and read it. If not, there's plenty there to contemplate.

>

> One thing that hasn't been mentioned, is that there is an alternative to

> ingesting radioactive iodine to test whether you have GD. That is getting

> antibody tests and an untrasound of your thyroid.

Hi Terry,

Thanks so much for taking the time to welcome me personally. What a friendly

and helpful group of people reside here!

I appreciate your steering me in the direction of the files section. Haven't

had a chance to poke around in there yet for all the " goodies " , but I'm sure

I'll be kept very busy and informed once I do. I found one of the welcome

letters from the moderator to be very informative and have saved that to my

filing

cabinet and plan to print it out so I have a handy pint-sized reference to

some of what I guess are the basics in dealing with Graves' Disease.

I did bring up the subject of the ultrasound as an alternative to the

radioactive uptake test, and the my internist said that she felt those were most

useful in cases where she could based on the physical exam find nodules on the

thyroid. She didn't in my case, so I guess I'm going to go ahead with what she

feels is best right now. My hubby used to work with nuclear stuff in the

military, and he feels that it isn't that much of a worry with what they will

give

me. I appreciate your wanting to make sure I'm aware of the options out there

though, and I certainly respect all those who might decide differently than me.

Enjoy your holiday weekend!

[Guest guest]

In a message dated 5/24/2003 7:32:01 AM Pacific Daylight Time,

jmerhar@... writes:

> Hi W.

> There are a lot of knowledgeable people on this site. But being the

> holiday weekend, you may not here much from them until after Memorial Day.

> But you need to get copies of your blood test's and post them so the other's

> can help give you advice. Also, always get copies of your blood test and

> start keeping a journal, because sometimes so much of what we need, or when

> we need to adjust a med, can rely on symptoms, not blood tests, or the

> symptom shows up first and the blood results later. Anyway, the others will

> chime in later. You found a great place to learn. Stick around.

>

Hi Jen,

The journal is a wonderful idea! I'll to go pick up a composition book today

so I can begin one. I will most definitely request copies of my lab work from

the internist next time I see her. Or is it better to ask the lab directly?

How often do you all get blood work done? The internist did mention that based

on her preliminary findings she might just watch me for now without doing any

kind of treatments per se.....but she didn't say specifically how often that

would be. Is there some standard time period when monitoring this disease via

the lab tests that is best?

Gee, if this is a quiet weekend, I can't imagine the deluge that will come

once Tuesday is here! LOL

Thanks so much for greeting me. I hope you have a happy and safe Memorial Day

weekend.

[Guest guest]

Hi ,

Nice to meet another Southern Californian. :-) Thanks so much for your warm

welcome. I'll be sure to keep you in mind if I end up needing for find an

endocrinologist.

I hope to continue to be able to keep an eye out for myself. I did already

mention to my doctor that I wasn't real comfortable with the idea of the RAI

treatment if indeed I do have Graves' Disease and if it's serious enough to

warrant beginning treatment. She was fine with the thought of the medications as

the treatment plan. Not that those who had RAI were wrong to do it.....I'm just

leery of doing anything which is not reversible at this point in my life.

After all, I'm practically still a child at 44! LOLL

Enjoy your holiday weekend. Sure hope our weather warms up out here by

Monday. My hubby want to be able to BBQ for the holiday and it's just not the

same

when your shivering while you do it.

[Guest guest]

Hi W.

There are a lot of knowledgeable people on this site. But being the

holiday weekend, you may not here much from them until after Memorial Day.

But you need to get copies of your blood test's and post them so the other's

can help give you advice. Also, always get copies of your blood test and

start keeping a journal, because sometimes so much of what we need, or when

we need to adjust a med, can rely on symptoms, not blood tests, or the

symptom shows up first and the blood results later. Anyway, the others will

chime in later. You found a great place to learn. Stick around.

Jen M

Allow myself to introduce myself

> Hi All,

>

> Guess I should formally make everyone's acquaintance since I signed up

last

> night.

> :-) My name is , and I am a 44 year old female, married with

3

> children (2 still at home), living in Southern California. Haven't had any

real

> major health issues my whole life long, until after doing some blood work

as

> part of an investigation that involves a current case of tinnitus (ringing

in

> the ears), my doctor called and told me last week that my thyroid is

> overactive and that he wanted to run another blood test to look into

things and find

> out what's up.

>

> Being the anal little computer lovin' gal that I am, I immediately upon

> hanging up the phone with him went online to see exactly what that could

mean, and

> for the first time found the terms " hyperthyroidism " and Graves' Disease.

Just

> the quick look over that I saw of these things online convinced me that

for

> the sake of my nerves I should probably stop reading and wait for a

further

> report back from my Dr.! LOL So I tried my best not to think about it for

the

> past week, apart from praying about it.

>

> Just this past Wednesday my Dr. called back and said that I had Graves'

> Disease and that he wanted me to go in and see the internist as soon as

possible so

> I could discuss treatment options. He did say that it looked like it was

just

> starting the condition; which provided me with a bit of comfort at the

time.

>

> Back online I went and while I have spent about 4 hours so far over the

past

> 2 days surfing around and finding out more about what exactly this means

for

> me and my family, I know I really don't know much at all. So I was very

glad to

> stumble across a a yahoo group given as a link in one of the many sites

I've

> scouted around on. I'm a big fan of yahoo groups and belong to a bunch of

> them, mostly rubber stamping related. Thank you all for being here, and I

see I've

> gotten some emails already from the group, although I haven't had a chance

to

> read them as of yet due to the heavy web surfing I've been doing. In good

> times and bad, then things that bring us pleasure or the things that want

to drag

> us down, it helps so much to have others to share it with, and I

appreciate

> this group and hope to not only receive benefits by being here, but to

give

> benefits where and when I can to others as well.

>

> I saw the Internist today, and am much encouraged. Based on her looking at

> the initial blood work and her examination of me, she isn't convinced as

yet

> that I have Graves' Disease; or if I do it is an extremely mild form of

it. She

> has ordered me further blood tests to check my THS levels and T3 levels

again,

> as well as looking at the T4. (I know a wee bit of the lingo already, even

if

> I don't know exactly what it all means as yet.) I'm also scheduled for a

> radiological uptake on my thyroid for next week, so she can get a better

idea of

> what it doing and where and if it's secreting or holding onto the things

it

> shouldn't. She says I don't really show any of the physiological signs of

Graves'

> Disease, which is also encouraging. Basically she didn't guarantee that it

> would stay mild, but said that unless the additional tests showed

something

> really out of whack, she predicts that she'll just want to monitor me and

keep an

> eye on things with my thyroid.

>

> All in all, she seemed very knowledgeable about it, and stated that she

sees

> quite a few women who have thyroid problems. My darling hubby (who like

the

> rock he is went with me to my appointment) was very impressed with her. So

while

> I could see an endocrinologist, I guess I feel at this stage of the game

that

> it's too soon to start: a. Panicking with a capital P and b. rope in the

> specialists. We did discuss some future eventualities, and I mentioned

that I

> wasn't comfortable with the whole treatment of burning my thyroid away and

would

> rather start with medications if and when treatment is indicated and she

was

> open to that.

>

> So that's where I stand at the moment. I hope everyone here has had the

best

> of all possible days. From what I could gather from reading some folks

stories

> who have struggled or are struggling with this condition, a lot of it is

> about trying to live life to the best of your abilities day by day and

moment by

> moment. My prayers for all you that you will succeed in that, but if not,

to

> find hope and encouragement wherever you are seeking it, and to try again

> tomorrow.

>

> Looking forward to getting to know you all and my apologies if this was an

> excessively wordy introduction. I'm a talker I admit it, but also I hope a

good

> listener too. God bless,

>

>

>

>

>

[Guest guest]

Hi,

I suspect that you may have subclinical hyperthyroidism, based on some of

what you said.

In sub hyperT, you have a low TSH but your thyroid hormone levels have not

yet become abnormally high. TSH is a pituitary hormone that regulates thyroid

hormone levels. So when your pituitary, via your hypothalamus, recognizes that

you have enough thyroid hormone for your needs without its help, it stops

secreting TSH and the TSH level is low. Normally, the pituitary secretes TSH in

small bursts all day along. TSH reacts with thyroid cells, ordering them to

produce and release thyroid hormone. In Graves' disease, thyroid antibodies

known

as TSI mimic TSH and cause your thyroid cells to produce this hormone.

With subclinical hyperT, symptoms can resolve as easily as they can progress

so therapy isn't recommended. Also, with normal thyroid hormone levels, meds

would cause hypothyroidism.

I have a page on subclinical hyperT on my web site if you want to read more

http://daisyelaine_co.tripod.com/gravesdisease/ Take care, Elaine

[Guest guest]

Welcome W,

I am assuming you are picking through my 'gems of wisdom', even though I am

not addressing you specificly. I DO have your situation in mind as I type.

This may be of intrest to you.

http://www.suite101.com/article.cfm/graves_disease/64958

-Pam L -

[Guest guest]

Hi Fay,

Thanks for all the insightful advice. I can see my AOL filing cabinet getting

big and bulgy at a very rapid rate! :-) It's encouraging to see so many

people who are positively taking action in their own health. It gives me hope

and

encouragement that I too can deal with this, come what may and come out the

other end still living and loving life. I must admit I've always kind of taken

the state of my health for granted.....this is going to be a big change for me,

but all to the good.

Have a great day!

[Guest guest]

Hi Elaine,

Thanks for pointing out that variance to me. I kinda have wondered if that

may be what is going on for me too. :-) I will definetely go to your website and

check out the article there and take it with me when I see my doctor after

the uptake test so I can probe her about this as well.

Have a great day!

[Guest guest]

Hi .

Not much to add to the excellent advice you've been given so far -

ultrasound scan instead (though I just read your dr.'s rebuttal), getting

records, the possiblility of subclinical hyperT, antibody testing, etc.

About the antibody testing - for some reason drs. seem amenable to doing

all the antibody testing besides the one necessary for the diagnosis of

GD - the TSI test. So do have that done as well.

You mentioned not having medical issues till now. This will be an

eye-opening experience for you as far as medicine as practiced in the

21st century is concerned. The fact is that 80% of specialists can and do

recommend the most last resort, worst possible treatment as a first

course of action; and then when they do administer it a sizeable number

won't give the ablated patients decent treatment in the form of regular

monitoring and thyroid replacement. Your family should always be healthy

and this in particular shouldn't develop into anything serious but now

you are getting tools to cope with the establishment in the future.

About your DH's experience in the nuclear field: this will be an

education for him too. There's a member of this list who also has such

professional experience and based his treatment decisions based on his

knowledge and he definitely didn't have a casual attitude to the various

forms of radioactive iodine used in diagonsis and treatment.

And if you have any dental work coming up, ask for novocaine without -

forgot what it's called! Epinephrine? Some stimulant that you shouldn't

have since you may be more proned to feel hyper after. Won't affect the

novocaine's potency.

Hope you solve your tinnitus soon, take care, Fay (in remission for going

on 2 years after 14 months on Tapazole)

________________________________________________________________

The best thing to hit the internet in years - Juno SpeedBand!

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[Guest guest]

In a message dated 5/24/2003 12:35:40 PM Pacific Daylight Time,

pladd@... writes:

> http://www.suite101.com/article.cfm/graves_disease/64958

>

Thanks for the link to the article Pam. :-) It's nice that everybody here is

so willing and able to help out a newbie like me. And yes, I am picking

through all the gems of wisdom that cross my mailbox, even if they don't

specifically apply to me. LOL Have a wonderful day!