Re: Wouldn't you know it..(long)

[Guest guest]

Hi Caroline,

I am so sorry you are feeling so terrible and now have your dr. treat you

this way. It is not acceptable for him to do that, you could either tell

him you want some answers to your questions, that your not controlling but

it is YOUR body or you could find another endo, one who truely has some

knowledge of this disease and its symptoms, one who will take the time to

sit down with you and help with all of this.

There are good endos out there that don't give lip service to though of us

with GD...I doubted it for a long time, but now I have one I truly like, who

takes time, will return my long distance calls to answer questions

etc...just something to consider.

When were you diagnosed again, brain farts this morning, and are you on

ATD's?

Take care,

Jody

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[Guest guest]

Hi Caroline,

I am so sorry you are feeling so terrible and now have your dr. treat you

this way. It is not acceptable for him to do that, you could either tell

him you want some answers to your questions, that your not controlling but

it is YOUR body or you could find another endo, one who truely has some

knowledge of this disease and its symptoms, one who will take the time to

sit down with you and help with all of this.

There are good endos out there that don't give lip service to though of us

with GD...I doubted it for a long time, but now I have one I truly like, who

takes time, will return my long distance calls to answer questions

etc...just something to consider.

When were you diagnosed again, brain farts this morning, and are you on

ATD's?

Take care,

Jody

_________________________________________________________________________

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Share information about yourself, create your own public profile at

http://profiles.msn.com.

[Guest guest]

Dear Caroline,

I am sure that your doctor should and will do labs closer to your surgery. And

you should keep a very complete log of any symptoms. Take your pulse in the am

before you arise and then again after you have moved around.

Be sure that you aren't taking seafood supplements ( kelp) or iodized vitamins

etc.

Relaxation and any gentle walking or stretching you can do would help calm

things down.

Drink lots of water too.

I don't know your history, just what was in this post, but that is a very high

resting pulse. Did youtell the doctor that?

I don't know why you call your post a raving, you sound sane and rightly seeking

to give the doc info he needs to properly determine your treatment.

" Control freAK " ? THAT IS WHEN FOLKS TRY TO MONKEY IN OTHER PEOples lives...not

when they pay attention to their health and seek input. And evenif you were a

CF, CF's need blood work done too.

And 2nd opinions can be very comforting and supportive... and definitely what

you need right now is some medical support.

best to you...don't internalize your doc's lack of grace, maybe he was having a

bad day too.

Jeannette

[Guest guest]

Dear Caroline,

I am sure that your doctor should and will do labs closer to your surgery. And

you should keep a very complete log of any symptoms. Take your pulse in the am

before you arise and then again after you have moved around.

Be sure that you aren't taking seafood supplements ( kelp) or iodized vitamins

etc.

Relaxation and any gentle walking or stretching you can do would help calm

things down.

Drink lots of water too.

I don't know your history, just what was in this post, but that is a very high

resting pulse. Did youtell the doctor that?

I don't know why you call your post a raving, you sound sane and rightly seeking

to give the doc info he needs to properly determine your treatment.

" Control freAK " ? THAT IS WHEN FOLKS TRY TO MONKEY IN OTHER PEOples lives...not

when they pay attention to their health and seek input. And evenif you were a

CF, CF's need blood work done too.

And 2nd opinions can be very comforting and supportive... and definitely what

you need right now is some medical support.

best to you...don't internalize your doc's lack of grace, maybe he was having a

bad day too.

Jeannette

[Guest guest]

Caroline, good luck. One question that I hope won't upset you: is this

the endo or the surgeon? Not being in the US you may stand a better

chance of finding a skilled surgeon but one has to be careful.

Also, a question for the audience - does anyone know if there's a

recommended preparatory protocol for surgery? For example, before RAI

it's important for the patient to be on beta-blockers and/or ATD's to

reduce the risk of thyroid storm (even if not all endos will do this).

Fay Young

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[Guest guest]

Caroline, good luck. One question that I hope won't upset you: is this

the endo or the surgeon? Not being in the US you may stand a better

chance of finding a skilled surgeon but one has to be careful.

Also, a question for the audience - does anyone know if there's a

recommended preparatory protocol for surgery? For example, before RAI

it's important for the patient to be on beta-blockers and/or ATD's to

reduce the risk of thyroid storm (even if not all endos will do this).

Fay Young

________________________________________________________________

YOU'RE PAYING TOO MUCH FOR THE INTERNET!

Juno now offers FREE Internet Access!

Try it today - there's no risk! For your FREE software, visit:

http://dl.www.juno.com/get/tagj.

[Guest guest]

Caroline:

Fay's got some good points - I had the same questions when I read your

post. If I were in your place, I know I would feel much better for having

run blood tests again.

I have not had a thyroidectomy, but have had a tumor removed from my neck.

My mother and one sister have had thyroidectomies. Without going into

specifics, please be very very sure that you have a surgeon who has done

this many times successfully. There's a lot going on around the thyroid,

such as the parathyroid and your facial nerves, so don't take any chances!

I hope everything goes smoothly and successfully from now on.

At 10:55 AM 09/26/2000 -0400, you wrote:

>Caroline, good luck. One question that I hope won't upset you: is this

>the endo or the surgeon? Not being in the US you may stand a better

>chance of finding a skilled surgeon but one has to be careful.

>Also, a question for the audience - does anyone know if there's a

>recommended preparatory protocol for surgery? For example, before RAI

>it's important for the patient to be on beta-blockers and/or ATD's to

>reduce the risk of thyroid storm (even if not all endos will do this).

>Fay Young

>________________________________________________________________

>YOU'RE PAYING TOO MUCH FOR THE INTERNET!

>Juno now offers FREE Internet Access!

>Try it today - there's no risk! For your FREE software, visit:

>http://dl.www.juno.com/get/tagj.

>

>

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

>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]

> Caroline, good luck. One question that I hope won't upset you: is

this

> the endo or the surgeon? Not being in the US you may stand a better

> chance of finding a skilled surgeon but one has to be careful.

> Also, a question for the audience - does anyone know if there's a

> recommended preparatory protocol for surgery? For example, before

RAI

> it's important for the patient to be on beta-blockers and/or ATD's

to

> reduce the risk of thyroid storm (even if not all endos will do

this).

> Fay Young

First: It is ABSOLUTELY ESSENTIAL you're EUthyroid (normal hormone

readings) prior surgery.

Second: In almost all cases LUGOL (iodine containing drops) are given

for 10 days or a week, right before surgery, ir order to harden the

gland and make it easier for the surgeon to handle, and also to avoid

excessive bleeding as the thyroid is a very vascularized gland.

A.

[Guest guest]

> Caroline, good luck. One question that I hope won't upset you: is

this

> the endo or the surgeon? Not being in the US you may stand a better

> chance of finding a skilled surgeon but one has to be careful.

> Also, a question for the audience - does anyone know if there's a

> recommended preparatory protocol for surgery? For example, before

RAI

> it's important for the patient to be on beta-blockers and/or ATD's

to

> reduce the risk of thyroid storm (even if not all endos will do

this).

> Fay Young

First: It is ABSOLUTELY ESSENTIAL you're EUthyroid (normal hormone

readings) prior surgery.

Second: In almost all cases LUGOL (iodine containing drops) are given

for 10 days or a week, right before surgery, ir order to harden the

gland and make it easier for the surgeon to handle, and also to avoid

excessive bleeding as the thyroid is a very vascularized gland.

A.

[Guest guest]

Caroline,

Call the drs. office and talk to the receptionist...ask her to give your

phone number and/or your e-mail address to some of his other GD patients.

Maybe you can start your own support group given the number of people there

with GD...it would also give you an opprotunity to talk with others about

your dr to see if they are having the same feelings.

I have read all of the other posts, and I have to agree, I wouldn't have the

surgery until your symptoms are calmed down to a manageable level. I'm not

sure if postponing it before you get some contacts from the drs. office or

not If you do, they may not help you get connected with other GDers but

then you could come back with 'talking with others may help me to understand

what is going on and calm me down to the treatment I need'...I know with the

surgeon who does all the thyroid surgeries here, he has passed my name and

number on to a few of his GD patients, though he wouldn't give me their

info, which is understandable, can't do that without permission.

I do understand the confusion part, Caroline, we all do, I am getting to a

point where I can deal with it a bit better, but in the beginning when I

couldn't think of a word for an object I was looking at I would just

cry...it does get better. But while you are in this condition, it is

definately not the time to be making life-long decisions, your mind just

isn't thinking properly...yet, but it will get better

I don't remember when you were diagnosed...has it been just recently?

*HUGZ* and prayers for you.

Jody

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[Guest guest]

Hi Jody

Thanks for the time you take to help me. I agree the attitude is not acceptable.

I feel

somewhat stuck though. I haven't found any support groups in Australia to get

info

on a more 'user friendly' endo and the one I have has got a decent reputation in

the

area I live in. He has about 50 to 60 GD patients (he tells me) and that's not

bad given

I estimate there to be about 350 in all of Sydney.

Tomorrow I'm going to see the naturopathic physician I saw in June, who has

helped my

symptoms with homeopathic meds. I've rested this morning and I'm off the work

shortly,

so I hope to feel better today.

I'm have GD and multi nodule goitre and am on PTU (50mg X 2 per day) + Thyroxin

(T4) because my bloods 1 month ago showed me to be hypo. I stopped the thyroxin

1 week ago when I felt hyper. I felt so confused last night that I thought I

better take it

again as the endo felt I was not hyper.

I really don't know what to do right now. I'll pray about for awhile and try to

settle myself

down. The answers usually come sooner or later.

Take Care

Caroline

Jody Spitale wrote:

> Hi Caroline,

> I am so sorry you are feeling so terrible and now have your dr. treat you

> this way. It is not acceptable for him to do that, you could either tell

> him you want some answers to your questions, that your not controlling but

> it is YOUR body or you could find another endo, one who truely has some

> knowledge of this disease and its symptoms, one who will take the time to

> sit down with you and help with all of this.

> There are good endos out there that don't give lip service to though of us

> with GD...I doubted it for a long time, but now I have one I truly like, who

> takes time, will return my long distance calls to answer questions

> etc...just something to consider.

>

> When were you diagnosed again, brain farts this morning, and are you on

> ATD's?

>

> Take care,

> Jody

> _________________________________________________________________________

> Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com.

>

> Share information about yourself, create your own public profile at

> http://profiles.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]

Dear Jeanette

Thanks for the help.

My endo doesn't plan to see me again until the night before surgery in hospital

and my surgeon hasn't told me to see him again also. I find this very confusing.

I will call the surgeon and try to get another appointment

before surgery.

I have never kept a journal of my symptoms - I can see the sense in this and

will start straight away - thanks for the tip.

I don't take supplements, I do usually drink lots of water and I don't get much

exercise or proper relaxation - so will try to fix that.

I did tell the endo the pulse rate - he says I was anxious!

I'm unsure if I can get a second opinion before the surgery. I do know a very

good physician and I can speak to him about it all.

Will keep you posted - thanks again

Caroline

Xenoi@... wrote:

> Dear Caroline,

>

> I am sure that your doctor should and will do labs closer to your surgery.

And you should keep a very complete log of any symptoms. Take your pulse in the

am before you arise and then again after you have moved around.

>

> Be sure that you aren't taking seafood supplements ( kelp) or iodized

vitamins etc.

>

> Relaxation and any gentle walking or stretching you can do would help calm

things down.

>

> Drink lots of water too.

>

> I don't know your history, just what was in this post, but that is a very high

resting pulse. Did youtell the doctor that?

>

> I don't know why you call your post a raving, you sound sane and rightly

seeking to give the doc info he needs to properly determine your treatment.

>

> " Control freAK " ? THAT IS WHEN FOLKS TRY TO MONKEY IN OTHER PEOples

lives...not when they pay attention to their health and seek input. And evenif

you were a CF, CF's need blood work done too.

>

> And 2nd opinions can be very comforting and supportive... and definitely what

you need right now is some medical support.

>

> best to you...don't internalize your doc's lack of grace, maybe he was having

a bad day too.

>

> Jeannette

>

>

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

> 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]

Thanks Fay

It was my endo. The surgeon tells me he has been doing thyroid surgery for about

30 years and he currently does 2 or

3 per week (we don't have a huge population in Sydney). He says he not had

serious complications.

I know I have to euthyroid before surgery because of the risk - I suspect I am

not at present, so I'll have to get

it sorted out. I don't know of any other protocols.

Thanks again

Caroline

hkfjhsf Young wrote:

> Caroline, good luck. One question that I hope won't upset you: is this

> the endo or the surgeon? Not being in the US you may stand a better

> chance of finding a skilled surgeon but one has to be careful.

> Also, a question for the audience - does anyone know if there's a

> recommended preparatory protocol for surgery? For example, before RAI

> it's important for the patient to be on beta-blockers and/or ATD's to

> reduce the risk of thyroid storm (even if not all endos will do this).

> Fay Young

> ________________________________________________________________

> YOU'RE PAYING TOO MUCH FOR THE INTERNET!

> Juno now offers FREE Internet Access!

> Try it today - there's no risk! For your FREE software, visit:

> http://dl.www.juno.com/get/tagj.

>

>

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

> 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]

Dear

I certainly will get the bloods done - somehow. As I answered to Fay, the

surgeon appears to know what he is doing.

I hope you sister and mother are doing OK.

Thanks for your wishes.

Caroline

Shen wrote:

> Caroline:

>

> Fay's got some good points - I had the same questions when I read your

> post. If I were in your place, I know I would feel much better for having

> run blood tests again.

>

> I have not had a thyroidectomy, but have had a tumor removed from my neck.

> My mother and one sister have had thyroidectomies. Without going into

> specifics, please be very very sure that you have a surgeon who has done

> this many times successfully. There's a lot going on around the thyroid,

> such as the parathyroid and your facial nerves, so don't take any chances!

>

> I hope everything goes smoothly and successfully from now on.

>

> At 10:55 AM 09/26/2000 -0400, you wrote:

> >Caroline, good luck. One question that I hope won't upset you: is this

> >the endo or the surgeon? Not being in the US you may stand a better

> >chance of finding a skilled surgeon but one has to be careful.

> >Also, a question for the audience - does anyone know if there's a

> >recommended preparatory protocol for surgery? For example, before RAI

> >it's important for the patient to be on beta-blockers and/or ATD's to

> >reduce the risk of thyroid storm (even if not all endos will do this).

> >Fay Young

> >________________________________________________________________

> >YOU'RE PAYING TOO MUCH FOR THE INTERNET!

> >Juno now offers FREE Internet Access!

> >Try it today - there's no risk! For your FREE software, visit:

> >http://dl.www.juno.com/get/tagj.

> >

> >

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

> >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.

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

> >

> >

>

>

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

> 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]

Dear

Yes I know I have to be euthyroid - I'm sure that's why I got so upest with the

endo being dismissive towards me.

Gee it isn't him on the table! Nor the endo or the surgeon have meantion the

drops to me. I will discuss with the

surgeon ASAP.

Thanks again

Caroline

" A. " wrote:

>

> > Caroline, good luck. One question that I hope won't upset you: is

> this

> > the endo or the surgeon? Not being in the US you may stand a better

> > chance of finding a skilled surgeon but one has to be careful.

> > Also, a question for the audience - does anyone know if there's a

> > recommended preparatory protocol for surgery? For example, before

> RAI

> > it's important for the patient to be on beta-blockers and/or ATD's

> to

> > reduce the risk of thyroid storm (even if not all endos will do

> this).

> > Fay Young

>

> First: It is ABSOLUTELY ESSENTIAL you're EUthyroid (normal hormone

> readings) prior surgery.

>

> Second: In almost all cases LUGOL (iodine containing drops) are given

> for 10 days or a week, right before surgery, ir order to harden the

> gland and make it easier for the surgeon to handle, and also to avoid

> excessive bleeding as the thyroid is a very vascularized gland.

>

> A.

>

>

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

> 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]

Caroline,

I've read all these posts, and I have only one piece of advice to add: Don't

rush into the surgery if you are feeling uncomfortable about things. If they

need to reschedule, and they are inconvenienced by that, it's their problem,

not yours.

Take the time to sort it all out, demand answers to all the questions, make

sure you don't get railroaded for some doctor's convenience! In the long

run, waiting a few days, weeks or even months, until you are absolutely sure

of what's going on and have confidence that you are making the right

decision, is not going to cause you any harm. Rushing into surgery if you

are uneasy and maybe influenced negatively by the fluctuations of your

thyroid may very well be harmful. Anyway, from what I'm reading here, you

shouldn't have the surgery at all if your thyroid is so unstable right now.

TerryP

>

> Reply-To: graves_supportegroups

> Date: Wed, 27 Sep 2000 11:49:02 +1000

> To: graves_supportegroups

> Subject: Re: Wouldn't you know it..(long)

>

> Hi Jody

>

> Thanks for the time you take to help me. I agree the attitude is not

> acceptable. I feel

> somewhat stuck though. I haven't found any support groups in Australia to get

> info

> on a more 'user friendly' endo and the one I have has got a decent reputation

> in the

> area I live in. He has about 50 to 60 GD patients (he tells me) and that's not

> bad given

> I estimate there to be about 350 in all of Sydney.

>

> Tomorrow I'm going to see the naturopathic physician I saw in June, who has

> helped my

> symptoms with homeopathic meds. I've rested this morning and I'm off the work

> shortly,

> so I hope to feel better today.

>

> I'm have GD and multi nodule goitre and am on PTU (50mg X 2 per day) +

> Thyroxin

> (T4) because my bloods 1 month ago showed me to be hypo. I stopped the

> thyroxin

> 1 week ago when I felt hyper. I felt so confused last night that I thought I

> better take it

> again as the endo felt I was not hyper.

>

> I really don't know what to do right now. I'll pray about for awhile and try

> to settle myself

> down. The answers usually come sooner or later.

>

> Take Care

> Caroline

>

> Jody Spitale wrote:

>

>> Hi Caroline,

>> I am so sorry you are feeling so terrible and now have your dr. treat you

>> this way. It is not acceptable for him to do that, you could either tell

>> him you want some answers to your questions, that your not controlling but

>> it is YOUR body or you could find another endo, one who truely has some

>> knowledge of this disease and its symptoms, one who will take the time to

>> sit down with you and help with all of this.

>> There are good endos out there that don't give lip service to though of us

>> with GD...I doubted it for a long time, but now I have one I truly like, who

>> takes time, will return my long distance calls to answer questions

>> etc...just something to consider.

>>

>> When were you diagnosed again, brain farts this morning, and are you on

>> ATD's?

>>

>> Take care,

>> Jody

>> _________________________________________________________________________

>> Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com.

>>

>> Share information about yourself, create your own public profile at

>> http://profiles.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.

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

>

>

>

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

> 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 Caroline,

I just read your reply to Terry. There is nothing at all you can do to

hurry *all of this up*. It is going to take time, even after surgery it

will take time to get you on the right dosage of TRH. I know you want to

have a baby or two, and I believe some women in this group have gotten

pregnant and successfully had a child while on one of the ATD's, I'm sorry I

don't remember if it was the TAP or PTU. The amount of PTU you are on

doesn't seem high from all I have read in posts. In the beginning, some

have been on 6 or more a day and gotten it cut back as symptoms began to

lessen.

I really think maybe a second opinion is needed for you, Caroline. You said

in one of your posts that there were 350 or so GD patients in Sydney and

your dr. had 50-60 of them? If that is so, then there must be someone else

that you can get a second opinion from before doing something that will be

permanent...it is your decision, and no matter which way you choose, we will

all be here for you.

Take care,

Jody

_________________________________________________________________________

Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com.

Share information about yourself, create your own public profile at

http://profiles.msn.com.

[Guest guest]

Thanks Terry

I do feel uneasy and a bit rushed. I'm a bit to blame though. I want to try to

have a baby as soon as possible. I

got remarried last year and we planned to have a couple of babies. I had two

miscarriages, then found out I had was

hyper with GD (I do have a 17 year old son who is great and I feel fortunate to

have him - even when he does the

male teenage thing!). I'm over 39 years old and feel the time ticking on. My

endo is very concerned that I don't

fall pregnant on PTU, or at least on the amount I seem to need (100mg at

present, which I don't think is enough). Of

course we are being careful (who actually feels like *it* anyway!).

So, I guess I'm in a bit of a hurry to get it all fixed up. I am coming to feel

that I need to have a bit more

patience. I have carefully considered all the options and I do believe that

surgery is the right one - but I'm

feeling hyper right now and I don't to put myself at risk.

I'll get the bloods done ASAP and hopefully this will help me to sort it out.

I'll also let the endo know how I

felt/feel.

Thanks again

Caroline

Terry ding wrote:

> Caroline,

>

> I've read all these posts, and I have only one piece of advice to add: Don't

> rush into the surgery if you are feeling uncomfortable about things. If they

> need to reschedule, and they are inconvenienced by that, it's their problem,

> not yours.

>

> Take the time to sort it all out, demand answers to all the questions, make

> sure you don't get railroaded for some doctor's convenience! In the long

> run, waiting a few days, weeks or even months, until you are absolutely sure

> of what's going on and have confidence that you are making the right

> decision, is not going to cause you any harm. Rushing into surgery if you

> are uneasy and maybe influenced negatively by the fluctuations of your

> thyroid may very well be harmful. Anyway, from what I'm reading here, you

> shouldn't have the surgery at all if your thyroid is so unstable right now.

>

> TerryP

>

> >

> > Reply-To: graves_supportegroups

> > Date: Wed, 27 Sep 2000 11:49:02 +1000

> > To: graves_supportegroups

> > Subject: Re: Wouldn't you know it..(long)

> >

> > Hi Jody

> >

> > Thanks for the time you take to help me. I agree the attitude is not

> > acceptable. I feel

> > somewhat stuck though. I haven't found any support groups in Australia to

get

> > info

> > on a more 'user friendly' endo and the one I have has got a decent

reputation

> > in the

> > area I live in. He has about 50 to 60 GD patients (he tells me) and that's

not

> > bad given

> > I estimate there to be about 350 in all of Sydney.

> >

> > Tomorrow I'm going to see the naturopathic physician I saw in June, who has

> > helped my

> > symptoms with homeopathic meds. I've rested this morning and I'm off the

work

> > shortly,

> > so I hope to feel better today.

> >

> > I'm have GD and multi nodule goitre and am on PTU (50mg X 2 per day) +

> > Thyroxin

> > (T4) because my bloods 1 month ago showed me to be hypo. I stopped the

> > thyroxin

> > 1 week ago when I felt hyper. I felt so confused last night that I thought I

> > better take it

> > again as the endo felt I was not hyper.

> >

> > I really don't know what to do right now. I'll pray about for awhile and try

> > to settle myself

> > down. The answers usually come sooner or later.

> >

> > Take Care

> > Caroline

> >

> > Jody Spitale wrote:

> >

> >> Hi Caroline,

> >> I am so sorry you are feeling so terrible and now have your dr. treat you

> >> this way. It is not acceptable for him to do that, you could either tell

> >> him you want some answers to your questions, that your not controlling but

> >> it is YOUR body or you could find another endo, one who truely has some

> >> knowledge of this disease and its symptoms, one who will take the time to

> >> sit down with you and help with all of this.

> >> There are good endos out there that don't give lip service to though of us

> >> with GD...I doubted it for a long time, but now I have one I truly like,

who

> >> takes time, will return my long distance calls to answer questions

> >> etc...just something to consider.

> >>

> >> When were you diagnosed again, brain farts this morning, and are you on

> >> ATD's?

> >>

> >> Take care,

> >> Jody

> >> _________________________________________________________________________

> >> Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com.

> >>

> >> Share information about yourself, create your own public profile at

> >> http://profiles.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.

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

> >

> >

> >

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

> > 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.

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

> >

> >

>

>

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

> 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]

Thanks so much Jody

I will ask the receptionist. I don't feel up to organising a support group right

now - I just don't have the

emotional, mental or physical energy to do that. But I will see if I can get

some contact with others through the

Drs office. I think once I feel better I will definately think more about the

support group.

I was diagnosed in late May 2000. I was really sick by then - BP 170/120, pulse

- 120 to 130, hair falling out, very

high temperature, sweats, tremours of my hands, palpatations, not sleeping,

eating everything in sight and more etc,

etc, etc. I got better quickly with PTU (300mg) + beta blockers + homeopathic

meds + rest.

My current symptoms are the same, except milder.

I really appreciate the *HUGZ* and prayers. They are what is getting me through

right now.

By the way, how is your brother in law doing now? I hope he is comfortable and

recovering.

I also pray for you and your family.

Caroline

Jody Spitale wrote:

> Caroline,

>

> Call the drs. office and talk to the receptionist...ask her to give your

> phone number and/or your e-mail address to some of his other GD patients.

> Maybe you can start your own support group given the number of people there

> with GD...it would also give you an opprotunity to talk with others about

> your dr to see if they are having the same feelings.

>

> I have read all of the other posts, and I have to agree, I wouldn't have the

> surgery until your symptoms are calmed down to a manageable level. I'm not

> sure if postponing it before you get some contacts from the drs. office or

> not If you do, they may not help you get connected with other GDers but

> then you could come back with 'talking with others may help me to understand

> what is going on and calm me down to the treatment I need'...I know with the

> surgeon who does all the thyroid surgeries here, he has passed my name and

> number on to a few of his GD patients, though he wouldn't give me their

> info, which is understandable, can't do that without permission.

>

> I do understand the confusion part, Caroline, we all do, I am getting to a

> point where I can deal with it a bit better, but in the beginning when I

> couldn't think of a word for an object I was looking at I would just

> cry...it does get better. But while you are in this condition, it is

> definately not the time to be making life-long decisions, your mind just

> isn't thinking properly...yet, but it will get better

>

> I don't remember when you were diagnosed...has it been just recently?

> *HUGZ* and prayers for you.

> Jody

> _________________________________________________________________________

> Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com.

>

> Share information about yourself, create your own public profile at

> http://profiles.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]

Caroline:

100mg of PTU is a maintenance dosage, and is considered very low. If your

symptoms are so severe, I wonder why you are not taking a higher dosage to

calm everything down. Did the endo say not to? The beta blockers can calm

your heart down but you have to lower the hormones so that it doesn't keep

happening (high metabolism).

Good luck.

At 11:15 PM 09/27/2000 +1000, you wrote:

My endo is very concerned that I don't

>fall pregnant on PTU, or at least on the amount I seem to need (100mg at

present, which I don't think is enough).

[Guest guest]

Hi Debbie, I too got pregnant while on PTU. I was on only 200 then down to

100 mgs though. I was surprised that you were on high doses. I was told

that anything above 450 mg could have an effect on the fetus. I am

presuming your GD was serious to warrant this. I react so well to the PTU

that never required more that 400 mgs a day even when terribly hyper. I

felt like a pin cushion while pregnant. Got bloodwork every month and had

several sonograms. My baby was totally fine.. Thank God all worked out

well for you also. With careful watching all is usually alright. Hope this

is some reassurance for anyone wanting to have a baby with GD....... I.

Re: Wouldn't you know it..(long)

> >> >

> >> > Hi Jody

> >> >

> >> > Thanks for the time you take to help me. I agree the attitude is not

> >> > acceptable. I feel

> >> > somewhat stuck though. I haven't found any support groups in

Australia to

> get

> >> > info

> >> > on a more 'user friendly' endo and the one I have has got a decent

> reputation

> >> > in the

> >> > area I live in. He has about 50 to 60 GD patients (he tells me) and

that's

> not

> >> > bad given

> >> > I estimate there to be about 350 in all of Sydney.

> >> >

> >> > Tomorrow I'm going to see the naturopathic physician I saw in June,

who has

> >> > helped my

> >> > symptoms with homeopathic meds. I've rested this morning and I'm off

the

> work

> >> > shortly,

> >> > so I hope to feel better today.

> >> >

> >> > I'm have GD and multi nodule goitre and am on PTU (50mg X 2 per day)

+

> >> > Thyroxin

> >> > (T4) because my bloods 1 month ago showed me to be hypo. I stopped

the

> >> > thyroxin

> >> > 1 week ago when I felt hyper. I felt so confused last night that I

thought

> I

> >> > better take it

> >> > again as the endo felt I was not hyper.

> >> >

> >> > I really don't know what to do right now. I'll pray about for awhile

and

> try

> >> > to settle myself

> >> > down. The answers usually come sooner or later.

> >> >

> >> > Take Care

> >> > Caroline

> >> >

> >> > Jody Spitale wrote:

> >> >

> >> >> Hi Caroline,

> >> >> I am so sorry you are feeling so terrible and now have your dr.

treat you

> >> >> this way. It is not acceptable for him to do that, you could either

tell

> >> >> him you want some answers to your questions, that your not

controlling but

> >> >> it is YOUR body or you could find another endo, one who truely has

some

> >> >> knowledge of this disease and its symptoms, one who will take the

time to

> >> >> sit down with you and help with all of this.

> >> >> There are good endos out there that don't give lip service to though

of us

> >> >> with GD...I doubted it for a long time, but now I have one I truly

like,

> who

> >> >> takes time, will return my long distance calls to answer questions

> >> >> etc...just something to consider.

> >> >>

> >> >> When were you diagnosed again, brain farts this morning, and are you

on

> >> >> ATD's?

> >> >>

> >> >> Take care,

> >> >> Jody

> >> >>

_________________________________________________________________________

> >> >> Get Your Private, Free E-mail from MSN Hotmail at

http://www.hotmail.com.

> >> >>

> >> >> Share information about yourself, create your own public profile at

> >> >> http://profiles.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.

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

> >> >

> >> >

> >> >

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

> >> > 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.

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

> >> >

> >> >

> >>

> >>

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

> >> 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.

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

> >

> >

> >

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

> > 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.

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

> >

>

>

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

> 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]

Caroline,

I became pregnant on TAP, they immediately put me o PTU saying it was better

for you then the TAP. When I started on the PTU during my pregnancy they

started me on a dosage of 600 mg. per day, gradually within a couple of

months I was on a dosage of 50 mg. per day. This was all during my

pregnancy. The doctor who had me on the TAP also had me on cytomel, which

was considered an old method of treating GD. I never did see any change on

it. Before becoming pregnant I switched doctors, he immediately put me on

Atenonol (spelling not correct), within 24 hrs. my heart rate dropped to 74.

After years of being 120-140. They kept a close watch on me during my

pregnancy and tested the baby after birth for thyroid disease. My baby was

born the most beautiful thing in the world. After over 5 yrs. from being

diagnosed I am in remission at this time. I was on a maintenance of 50 mg.

for over 2-1/2 yrs. I still have up and down days, but most I feel fine.

It took me a long time to realize there were things that somedays I couldn't

do, and when tired to rest, and most important control the stress. And that

I have managed only in recent months, and with Gods help I am learning. I

feel my biggest mistake was not changing doctors when I saw no progress, I

went to that doctor for over 5 yrs. and became sicker and sicker as the

months went by. He was not an endo and said I really didn't need one, but he

was a QUACK, the second doctor was a D.O. I now go to an endo. Now if I am

not 100% comfortable, I change doctors. It only took me years to realize he

was being paid by me and I should feel comfortable, not just trust his

knowledge. We are all in this together, I pray you have better days ahead.

Debbie

----------

>

>To: graves_supportegroups

>Subject: Re: Wouldn't you know it..(long)

>Date: Wed, Sep 27, 2000, 6:15 AM

>

> Thanks Terry

>

> I do feel uneasy and a bit rushed. I'm a bit to blame though. I want to try

> to have a baby as soon as possible. I

> got remarried last year and we planned to have a couple of babies. I had

> two miscarriages, then found out I had was

> hyper with GD (I do have a 17 year old son who is great and I feel

> fortunate to have him - even when he does the

> male teenage thing!). I'm over 39 years old and feel the time ticking on.

> My endo is very concerned that I don't

> fall pregnant on PTU, or at least on the amount I seem to need (100mg at

> present, which I don't think is enough). Of

> course we are being careful (who actually feels like *it* anyway!).

>

> So, I guess I'm in a bit of a hurry to get it all fixed up. I am coming to

> feel that I need to have a bit more

> patience. I have carefully considered all the options and I do believe that

> surgery is the right one - but I'm

> feeling hyper right now and I don't to put myself at risk.

>

> I'll get the bloods done ASAP and hopefully this will help me to sort it

> out. I'll also let the endo know how I

> felt/feel.

>

> Thanks again

> Caroline

>

> Terry ding wrote:

>

>> Caroline,

>>

>> I've read all these posts, and I have only one piece of advice to add: Don't

>> rush into the surgery if you are feeling uncomfortable about things. If they

>> need to reschedule, and they are inconvenienced by that, it's their problem,

>> not yours.

>>

>> Take the time to sort it all out, demand answers to all the questions, make

>> sure you don't get railroaded for some doctor's convenience! In the long

>> run, waiting a few days, weeks or even months, until you are absolutely sure

>> of what's going on and have confidence that you are making the right

>> decision, is not going to cause you any harm. Rushing into surgery if you

>> are uneasy and maybe influenced negatively by the fluctuations of your

>> thyroid may very well be harmful. Anyway, from what I'm reading here, you

>> shouldn't have the surgery at all if your thyroid is so unstable right now.

>>

>> TerryP

>>

>> >

>> > Reply-To: graves_supportegroups

>> > Date: Wed, 27 Sep 2000 11:49:02 +1000

>> > To: graves_supportegroups

>> > Subject: Re: Wouldn't you know it..(long)

>> >

>> > Hi Jody

>> >

>> > Thanks for the time you take to help me. I agree the attitude is not

>> > acceptable. I feel

>> > somewhat stuck though. I haven't found any support groups in Australia to

get

>> > info

>> > on a more 'user friendly' endo and the one I have has got a decent

reputation

>> > in the

>> > area I live in. He has about 50 to 60 GD patients (he tells me) and that's

not

>> > bad given

>> > I estimate there to be about 350 in all of Sydney.

>> >

>> > Tomorrow I'm going to see the naturopathic physician I saw in June, who has

>> > helped my

>> > symptoms with homeopathic meds. I've rested this morning and I'm off the

work

>> > shortly,

>> > so I hope to feel better today.

>> >

>> > I'm have GD and multi nodule goitre and am on PTU (50mg X 2 per day) +

>> > Thyroxin

>> > (T4) because my bloods 1 month ago showed me to be hypo. I stopped the

>> > thyroxin

>> > 1 week ago when I felt hyper. I felt so confused last night that I thought

I

>> > better take it

>> > again as the endo felt I was not hyper.

>> >

>> > I really don't know what to do right now. I'll pray about for awhile and

try

>> > to settle myself

>> > down. The answers usually come sooner or later.

>> >

>> > Take Care

>> > Caroline

>> >

>> > Jody Spitale wrote:

>> >

>> >> Hi Caroline,

>> >> I am so sorry you are feeling so terrible and now have your dr. treat you

>> >> this way. It is not acceptable for him to do that, you could either tell

>> >> him you want some answers to your questions, that your not controlling but

>> >> it is YOUR body or you could find another endo, one who truely has some

>> >> knowledge of this disease and its symptoms, one who will take the time to

>> >> sit down with you and help with all of this.

>> >> There are good endos out there that don't give lip service to though of us

>> >> with GD...I doubted it for a long time, but now I have one I truly like,

who

>> >> takes time, will return my long distance calls to answer questions

>> >> etc...just something to consider.

>> >>

>> >> When were you diagnosed again, brain farts this morning, and are you on

>> >> ATD's?

>> >>

>> >> Take care,

>> >> Jody

>> >> _________________________________________________________________________

>> >> Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com.

>> >>

>> >> Share information about yourself, create your own public profile at

>> >> http://profiles.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.

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

>> >

>> >

>> >

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

>> > 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.

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

>> >

>> >

>>

>>

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

>> 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.

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

>

>

>

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

> 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 ,

Years ago, docs thought that we'd just come out of all this Graves' stuff

with a normal pituitary-thyroid-hypothalamic response. But years of watching

people like us have shown that, after being suppressed for a long time, the

hypothalamus in our brain no longer responds to our normal thyroid hormone

levels. They're starting to call normal thyroid hormone levels and suppressed

TSH " subclinical hyperthyroidism " and it's recommended that our thyroid

levels be watched since they really don't know what to make of us. Despite

all that's known about thyroid function, there's still much that is unknown.

And this is also why many endos recommend using FT4 rather than TSH for

assessing true thyroid status.

[Guest guest]

Hi , my hypothalamic connections quit long ago. But I still remember the

thought of the day and had to chuckle at that. Hope that cat is behaving.

[Guest guest]

Hi there Jody

I'm taking a sicky from work today. I woke up this morning and it was just too

much. I want to rest and try to clear

the head of the *cobwebs*. I'm going to try to see my endo again. I'll discuss

with him a second opinion (if he

isn't receptive, I'll go to the GP for a referral).

I was on 9 PTU tabs + 2 beta blockers per day for the first month (June) then

slowly reduced to now 2 (which I'm

sure isn't holding me). The literature I have read in the MIMS (a comprehensive

drug prescribing guide), says that

PTU is the drug of choice in pregnancy - but still it can cause congenital

defects at doses higher than 50mg (1 tab)

and even so needs close medical supervision.

Whilst I have read, and been encouraged by, the posts from others who have had

successful pregnancies on PTU with

GD, I'm concerned at the risk, given my age also increases the risk.

I haven't mentioned that my goitre causes me problems with trying get clear

breathing and if I'm not careful I

easily choke even on my own spit (sorry, a bit gross, I know).

I think the major concern for me right now is my endo's refusal to do the bloods

and his patronising of me last time

I saw him. I have been a psychiatric nurse for 20 years and I know about anxiety

and stress - my symptoms are not

just anxiety and my questions are not being a control freak.

I have found it difficult to fully assert myself with the endo. I think because

of the huge shock being hyper and

getting GD is to me. I found it daunting being on the 'other side of the table'

and the brain seemed to do flip

flops most of the time. I certainly better understand the position of the

patient and how it feels to have a

situation where you know there is an imbalance of power and you have difficulty

addressing it.

Hope you are having a good day. I'm not as *crazy* as I felt a couple of days

ago.

God Bless

Caroline

Jody Spitale wrote:

> Hi Caroline,

> I just read your reply to Terry. There is nothing at all you can do to

> hurry *all of this up*. It is going to take time, even after surgery it

> will take time to get you on the right dosage of TRH. I know you want to

> have a baby or two, and I believe some women in this group have gotten

> pregnant and successfully had a child while on one of the ATD's, I'm sorry I

> don't remember if it was the TAP or PTU. The amount of PTU you are on

> doesn't seem high from all I have read in posts. In the beginning, some

> have been on 6 or more a day and gotten it cut back as symptoms began to

> lessen.

>

> I really think maybe a second opinion is needed for you, Caroline. You said

> in one of your posts that there were 350 or so GD patients in Sydney and

> your dr. had 50-60 of them? If that is so, then there must be someone else

> that you can get a second opinion from before doing something that will be

> permanent...it is your decision, and no matter which way you choose, we will

> all be here for you.

> Take care,

> Jody

> _________________________________________________________________________

> Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com.

>

> Share information about yourself, create your own public profile at

> http://profiles.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.

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