Re: meeting with endo - HELP

[Guest guest]

Hi ,

Glad you found the board, and the fur flying only happens about once a year.

What you're going through has happened to a lot of people, and that " come to

your senses thing " is heard all too often.

Emphasize that you responded well to anti-thyroid drugs before and that you

want to continue on them. Ask for copies of your labs including your antibody

tests. I'm going to post an abstract a good friend sent me today emphasizing

the importance of antibody tests. While the article discusses hypoT, it's

encouraging to realize that the staid endos are catching up to what the more

holistic minded endos have been saying for a long time.

Also, check out my friend Mike's page,

www.webhome.idirect.com/~wolfnowl/thyroid.htm

You might find his dealings with GD interesting. Take care, Elaine

[Guest guest]

Hi ,

Welcome to the group!

As for how to respond to your endo, just let her know that you are

responding to the ATD's again, that ablation is NOT an option for you, tell

her that you intend to be fully involved with your treatment and you are not

making this decision lightly.

It is your body , and drs. can not force us to do things that we

don't want done, it is okay to just say no to RAI and be comfortable with

yourself for doing it. Your dr. may not want to treat you and may

tell/suggest that you find another dr., if that is the case (which I doubt

she will do) you can go to this url and click on your state and see who may

be in your area that is recommended by other patients. This is where I

found my current endo and I love her to death, even when we don't always

agree on things I do make a 2 hour drive to see her, but it is well

worth it!

http://thyroid.about.com/library/weekly/bldoc1.htm

If you are in the states I don't believe your dr. can refuse to treat you

until you have found someone new. I think if she refuses to continue to

treat you with your ATD's you can turn her in, but I don't remember to

who/where, state insurance board maybe?

A note on my new doc, she does not use RAI except as a last resort or with

thyroid cancer, she will perscribe Armour, and I am hoping I can soon get

her to do a compound perscription of my thyroid replacement hormone. When

she told me about RAI, I knew I would like her, there are endos coming

around to understand there is much more to this disease than just nuking our

thyroids, some are finally understanding this is NOT a disease of the

thyroid but a disease of the immune system. Like I said recently, why kill

the messenger?

Again, welcome to the group and good luck tomorrow. Stand your ground as

you have made up your mind and it is your body and please, let us know

tomorrow how it goes.

Take care,

Jody

_________________________________________________________________

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[Guest guest]

Hi ,

Welcome to the group!

As for how to respond to your endo, just let her know that you are

responding to the ATD's again, that ablation is NOT an option for you, tell

her that you intend to be fully involved with your treatment and you are not

making this decision lightly.

It is your body , and drs. can not force us to do things that we

don't want done, it is okay to just say no to RAI and be comfortable with

yourself for doing it. Your dr. may not want to treat you and may

tell/suggest that you find another dr., if that is the case (which I doubt

she will do) you can go to this url and click on your state and see who may

be in your area that is recommended by other patients. This is where I

found my current endo and I love her to death, even when we don't always

agree on things I do make a 2 hour drive to see her, but it is well

worth it!

http://thyroid.about.com/library/weekly/bldoc1.htm

If you are in the states I don't believe your dr. can refuse to treat you

until you have found someone new. I think if she refuses to continue to

treat you with your ATD's you can turn her in, but I don't remember to

who/where, state insurance board maybe?

A note on my new doc, she does not use RAI except as a last resort or with

thyroid cancer, she will perscribe Armour, and I am hoping I can soon get

her to do a compound perscription of my thyroid replacement hormone. When

she told me about RAI, I knew I would like her, there are endos coming

around to understand there is much more to this disease than just nuking our

thyroids, some are finally understanding this is NOT a disease of the

thyroid but a disease of the immune system. Like I said recently, why kill

the messenger?

Again, welcome to the group and good luck tomorrow. Stand your ground as

you have made up your mind and it is your body and please, let us know

tomorrow how it goes.

Take care,

Jody

_________________________________________________________________

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

[Guest guest]

- My standard line to those early endos was: " I'm not ready to make

a permanent decision. " Who can argue with that? Present ATDs as buying you

more 'deciding time.'

meeting with endo - HELP

> Hi everyone,

> I am a new member and have been lurking for a few days now, my

> timing on that not so good. I was diagnosed with Graves desease about

> 2 years ago. At that time I was given three options of treatment.

> Thyroid drugs(MME), ablation or surgury. I chose the drug and did

> quite well for that year. My main symptoms were jitters and heart

> palpatations and they stayed under control. After about 16 months, I

> was weaned off the drug and my levels remained normal for a few

> months after. I had a relapse at that time and was told to go back on

> 10mg of MME until the next appointment. For some reason, there was no

> next appointment so I stayed off and on my remaining MME. Since that

> time my Primary care physician(new) had me see another endo. This was

> about a month ago and she wanted to get my level normal before

> scheduling RAI. I tried to tell her RAI was not for me so she gave me

> a month to come to my senses. I am now on 10mg of Tapazole and again

> responding well. I do not have my numbers but will be sure to get

> them tomorrow.

> During the first go-around with graves, I knew little and trusted my

> doctor. I only knew the the thyroid needed iodine and kelp had

> iodine. I was told to go ahead and eat kelp if it made me happy. So

> much for trust. Thanks to Elaine here and at Suite 101, and

> ithyroid, Atomic Women, Shoman,Yahoo support groups and you all,

> I have gained some knowledge. I have read about goitrogens,

> bugleweed, motherwort, lemon balm, copper, magnesium, L-carnitine and

> lately, lots on iodine. I will not have ablation done and there in

> lays my current problem. I have no idea what to say to the

> endocrinologist tomorrow when she calls me a fool for not having RAI.

> What should I ask for and reasonable expect to get? Can I ask for

> tapizole, testing, results and nothing else like I want to

> Thank you for any thoughts on the matter.

>

>

>

>

>

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

> 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 ,

welcome and good luck with it all. About dealing with doctors,

just be staunch, and say no, that's not the treatment for me.

Your doctors are your consultants, to give you advice, to inform

you of your choices. (Even if they like to think they are God and

you know nothing)They are entitled to their views, but it is you

who must live with the effects, and ultimately you are the expert

on you. And you can quite reasonably say you don't want to do

anything irreversable yet at least.

I find it helps to imagine I am arranging treatment for someone I

care about who I have to protect. Then I don't feel so guilty about

saying " no " .

Then again, here in WA, at least for the first episode of Graves,

they seem to be happy to treat with ATDs, and do not even

suggest either surgery or RAI,- my doctor mentioned them as a

possibility " Way down the Track " if the other doesn't work. And I

was looking into both as a way of getting rid of antibodies, but

the RAI doesn't even seem to do that, and I cannot find anything

clear on the other.

Hope it goes well.

> Hi everyone,

> I am a new member and have been lurking for a few days

now, my

> timing on that not so good. I was diagnosed with Graves

desease about

> 2 years ago. At that time I was given three options of treatment.

> Thyroid drugs(MME), ablation or surgury. I chose the drug and

did

> quite well for that year. My main symptoms were jitters and

heart

> palpatations and they stayed under control. After about 16

months, I

> was weaned off the drug and my levels remained normal for a

few

> months after. I had a relapse at that time and was told to go

back on

> 10mg of MME until the next appointment. For some reason,

there was no

> next appointment so I stayed off and on my remaining MME.

Since that

> time my Primary care physician(new) had me see another

endo. This was

> about a month ago and she wanted to get my level normal

before

> scheduling RAI. I tried to tell her RAI was not for me so she

gave me

> a month to come to my senses. I am now on 10mg of Tapazole

and again

> responding well. I do not have my numbers but will be sure to

get

> them tomorrow.

> During the first go-around with graves, I knew little and trusted

my

> doctor. I only knew the the thyroid needed iodine and kelp had

> iodine. I was told to go ahead and eat kelp if it made me happy.

So

> much for trust. Thanks to Elaine here and at Suite 101,

and

> ithyroid, Atomic Women, Shoman,Yahoo support groups

and you all,

> I have gained some knowledge. I have read about goitrogens,

> bugleweed, motherwort, lemon balm, copper, magnesium,

L-carnitine and

> lately, lots on iodine. I will not have ablation done and there in

> lays my current problem. I have no idea what to say to the

> endocrinologist tomorrow when she calls me a fool for not

having RAI.

> What should I ask for and reasonable expect to get? Can I ask

for

> tapizole, testing, results and nothing else like I want to

> Thank you for any thoughts on the matter.

>

[Guest guest]

Hi ,

I wonder if you saw a post from me earlier today? Feel free to use

it when you speak to your endo. Also, I think a good point is that

destroying a vital organ is not even close to the credo " First do no

harm " .

Someone wrote to me, " There could be developments in a year or two

that

totally change the outlook for Graves. If you have the surgery or the

RAI, you

will have missed this

boat "

I wrote back " I particularly like that statement. It is very true,

too. For

instance the antioxidant thing could be all that's necessary to

intervene in GD

effectively...Wouldn't that be something? All this nuclear stuff to

ablate what

a vitamin/mineral tablet could cure!!

> Hi everyone,

> I am a new member and have been lurking for a few days now, my

> timing on that not so good. I was diagnosed with Graves desease

about

> 2 years ago. At that time I was given three options of treatment.

> Thyroid drugs(MME), ablation or surgury. I chose the drug and did

> quite well for that year. My main symptoms were jitters and heart

> palpatations and they stayed under control. After about 16 months,

I

> was weaned off the drug and my levels remained normal for a few

> months after. I had a relapse at that time and was told to go back

on

> 10mg of MME until the next appointment. For some reason, there was

no

> next appointment so I stayed off and on my remaining MME. Since

that

> time my Primary care physician(new) had me see another endo. This

was

> about a month ago and she wanted to get my level normal before

> scheduling RAI. I tried to tell her RAI was not for me so she gave

me

> a month to come to my senses. I am now on 10mg of Tapazole and

again

> responding well. I do not have my numbers but will be sure to get

> them tomorrow.

> During the first go-around with graves, I knew little and trusted

my

> doctor. I only knew the the thyroid needed iodine and kelp had

> iodine. I was told to go ahead and eat kelp if it made me happy. So

> much for trust. Thanks to Elaine here and at Suite 101, and

> ithyroid, Atomic Women, Shoman,Yahoo support groups and you

all,

> I have gained some knowledge. I have read about goitrogens,

> bugleweed, motherwort, lemon balm, copper, magnesium, L-carnitine

and

> lately, lots on iodine. I will not have ablation done and there in

> lays my current problem. I have no idea what to say to the

> endocrinologist tomorrow when she calls me a fool for not having

RAI.

> What should I ask for and reasonable expect to get? Can I ask for

> tapizole, testing, results and nothing else like I want to

> Thank you for any thoughts on the matter.

>

[Guest guest]

You know what you want, and you know why, and you do not have

to accept anything else. You might like to ask why she suggests

what she does, and tell her why you don't agree.You may actually

make her reconsider her opinion. But I encourage you to stand

firm, and I wish you luck. It doesn't matter if she thinks you are

stupid: you know you are doing the wise thing.

let us know how it goes.

.. I will not have ablation done and there in

> lays my current problem. I have no idea what to say to the

> endocrinologist tomorrow when she calls me a fool for not

having RAI.

> What should I ask for and reasonable expect to get? Can I ask

for

> tapizole, testing, results and nothing else like I want to

> Thank you for any thoughts on the matter.

>

[Guest guest]

Hi Elaine,

This address didn't work for me.

> Hi ,

> Glad you found the board, and the fur flying only happens about

once a year.

> What you're going through has happened to a lot of people, and

that " come to

> your senses thing " is heard all too often.

> Emphasize that you responded well to anti-thyroid drugs before and

that you

> want to continue on them. Ask for copies of your labs including

your antibody

> tests. I'm going to post an abstract a good friend sent me today

emphasizing

> the importance of antibody tests. While the article discusses

hypoT, it's

> encouraging to realize that the staid endos are catching up to what

the more

> holistic minded endos have been saying for a long time.

> Also, check out my friend Mike's page,

> www.webhome.idirect.com/~wolfnowl/thyroid.htm

> You might find his dealings with GD interesting. Take care, Elaine

>

>

>

[Guest guest]

Hi ,

Found the correct address on Elaine's site. Reading it now.

http://webhome.idirect.com/~wolfnowl/thyroid.htm

> > Hi ,

> > Glad you found the board, and the fur flying only happens about

> once a year.

> > What you're going through has happened to a lot of people, and

> that " come to

> > your senses thing " is heard all too often.

> > Emphasize that you responded well to anti-thyroid drugs before

and

> that you

> > want to continue on them. Ask for copies of your labs including

> your antibody

> > tests. I'm going to post an abstract a good friend sent me today

> emphasizing

> > the importance of antibody tests. While the article discusses

> hypoT, it's

> > encouraging to realize that the staid endos are catching up to

what

> the more

> > holistic minded endos have been saying for a long time.

> > Also, check out my friend Mike's page,

> > www.webhome.idirect.com/~wolfnowl/thyroid.htm

> > You might find his dealings with GD interesting. Take care, Elaine

> >

> >

> >

[Guest guest]

,

Welcome to this group. It's exciting to have a man here! This disease seems

to attack us women more often, by the makeup of the group so far--either

that, or many men w/ gd are loners!

Terry

> From: galdalf@...

> Reply-To: graves_support

> Date: Wed, 05 Sep 2001 23:24:50 -0000

> To: graves_support

> Subject: meeting with endo - HELP

>

> Hi everyone,

> I am a new member and have been lurking for a few days now, my

> timing on that not so good. I was diagnosed with Graves desease about

> 2 years ago. At that time I was given three options of treatment.

> Thyroid drugs(MME), ablation or surgury. I chose the drug and did

> quite well for that year. My main symptoms were jitters and heart

> palpatations and they stayed under control. After about 16 months, I

> was weaned off the drug and my levels remained normal for a few

> months after. I had a relapse at that time and was told to go back on

> 10mg of MME until the next appointment. For some reason, there was no

> next appointment so I stayed off and on my remaining MME. Since that

> time my Primary care physician(new) had me see another endo. This was

> about a month ago and she wanted to get my level normal before

> scheduling RAI. I tried to tell her RAI was not for me so she gave me

> a month to come to my senses. I am now on 10mg of Tapazole and again

> responding well. I do not have my numbers but will be sure to get

> them tomorrow.

> During the first go-around with graves, I knew little and trusted my

> doctor. I only knew the the thyroid needed iodine and kelp had

> iodine. I was told to go ahead and eat kelp if it made me happy. So

> much for trust. Thanks to Elaine here and at Suite 101, and

> ithyroid, Atomic Women, Shoman,Yahoo support groups and you all,

> I have gained some knowledge. I have read about goitrogens,

> bugleweed, motherwort, lemon balm, copper, magnesium, L-carnitine and

> lately, lots on iodine. I will not have ablation done and there in

> lays my current problem. I have no idea what to say to the

> endocrinologist tomorrow when she calls me a fool for not having RAI.

> What should I ask for and reasonable expect to get? Can I ask for

> tapizole, testing, results and nothing else like I want to

> Thank you for any thoughts on the matter.

>

>

>

>

>

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

> 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 a lot !

> > > Hi ,

> > > Glad you found the board, and the fur flying only happens about

> > once a year.

> > > What you're going through has happened to a lot of people, and

> > that " come to

> > > your senses thing " is heard all too often.

> > > Emphasize that you responded well to anti-thyroid drugs before

> and

> > that you

> > > want to continue on them. Ask for copies of your labs including

> > your antibody

> > > tests. I'm going to post an abstract a good friend sent me

today

> > emphasizing

> > > the importance of antibody tests. While the article discusses

> > hypoT, it's

> > > encouraging to realize that the staid endos are catching up to

> what

> > the more

> > > holistic minded endos have been saying for a long time.

> > > Also, check out my friend Mike's page,

> > > www.webhome.idirect.com/~wolfnowl/thyroid.htm

> > > You might find his dealings with GD interesting. Take care,

Elaine

> > >

> > >

> > >

[Guest guest]

Thank you Terry. I think the ratio is about 8 to 1. I am not in " high

risk " by sex, age, or heredity factors, but managed to get it anyway:)

> ,

> Welcome to this group. It's exciting to have a man here! This

disease seems

> to attack us women more often, by the makeup of the group so far--

either

> that, or many men w/ gd are loners!

>

> Terry

>

> > From: galdalf@s...

> > Reply-To: graves_support@y...

> > Date: Wed, 05 Sep 2001 23:24:50 -0000

> > To: graves_support@y...

> > Subject: meeting with endo - HELP

> >

> > Hi everyone,

> > I am a new member and have been lurking for a few days now, my

> > timing on that not so good. I was diagnosed with Graves desease

about

> > 2 years ago. At that time I was given three options of treatment.

> > Thyroid drugs(MME), ablation or surgury. I chose the drug and did

> > quite well for that year. My main symptoms were jitters and heart

> > palpatations and they stayed under control. After about 16

months, I

> > was weaned off the drug and my levels remained normal for a few

> > months after. I had a relapse at that time and was told to go

back on

> > 10mg of MME until the next appointment. For some reason, there

was no

> > next appointment so I stayed off and on my remaining MME. Since

that

> > time my Primary care physician(new) had me see another endo. This

was

> > about a month ago and she wanted to get my level normal before

> > scheduling RAI. I tried to tell her RAI was not for me so she

gave me

> > a month to come to my senses. I am now on 10mg of Tapazole and

again

> > responding well. I do not have my numbers but will be sure to get

> > them tomorrow.

> > During the first go-around with graves, I knew little and trusted

my

> > doctor. I only knew the the thyroid needed iodine and kelp had

> > iodine. I was told to go ahead and eat kelp if it made me happy.

So

> > much for trust. Thanks to Elaine here and at Suite 101, and

> > ithyroid, Atomic Women, Shoman,Yahoo support groups and you

all,

> > I have gained some knowledge. I have read about goitrogens,

> > bugleweed, motherwort, lemon balm, copper, magnesium, L-carnitine

and

> > lately, lots on iodine. I will not have ablation done and there in

> > lays my current problem. I have no idea what to say to the

> > endocrinologist tomorrow when she calls me a fool for not having

RAI.

> > What should I ask for and reasonable expect to get? Can I ask for

> > tapizole, testing, results and nothing else like I want to

> > Thank you for any thoughts on the matter.

> >

> >

> >

> >

> >

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

> > 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 ,

I truly beleive it is close. Another great reason for not ablating.

I read just last week about the benefits of L-Caritine in

Shoman's letter. Who would ever expect a breakthrough from a body

builders additive? I printed out your " hope " message and reams of

stuff from Elaine's 101 site. On my way shortly. Thanks.

> > Hi everyone,

> > I am a new member and have been lurking for a few days now, my

> > timing on that not so good. I was diagnosed with Graves desease

> about

> > 2 years ago. At that time I was given three options of treatment.

> > Thyroid drugs(MME), ablation or surgury. I chose the drug and did

> > quite well for that year. My main symptoms were jitters and heart

> > palpatations and they stayed under control. After about 16

months,

> I

> > was weaned off the drug and my levels remained normal for a few

> > months after. I had a relapse at that time and was told to go

back

> on

> > 10mg of MME until the next appointment. For some reason, there

was

> no

> > next appointment so I stayed off and on my remaining MME. Since

> that

> > time my Primary care physician(new) had me see another endo. This

> was

> > about a month ago and she wanted to get my level normal before

> > scheduling RAI. I tried to tell her RAI was not for me so she

gave

> me

> > a month to come to my senses. I am now on 10mg of Tapazole and

> again

> > responding well. I do not have my numbers but will be sure to get

> > them tomorrow.

> > During the first go-around with graves, I knew little and

trusted

> my

> > doctor. I only knew the the thyroid needed iodine and kelp had

> > iodine. I was told to go ahead and eat kelp if it made me happy.

So

> > much for trust. Thanks to Elaine here and at Suite 101, and

> > ithyroid, Atomic Women, Shoman,Yahoo support groups and you

> all,

> > I have gained some knowledge. I have read about goitrogens,

> > bugleweed, motherwort, lemon balm, copper, magnesium, L-carnitine

> and

> > lately, lots on iodine. I will not have ablation done and there

in

> > lays my current problem. I have no idea what to say to the

> > endocrinologist tomorrow when she calls me a fool for not having

> RAI.

> > What should I ask for and reasonable expect to get? Can I ask for

> > tapizole, testing, results and nothing else like I want to

> > Thank you for any thoughts on the matter.

> >

[Guest guest]

Hi ,

Thanks for the update. I'm glad she's ordered other tests besides TSH since

that may take some time to start falling. Let us know your results when you

receive copies. I hope you have a great response to the 10 mg so she can

reduce your dose in about 6 weeks. Best to you, Elaien

[Guest guest]

Hi Anise,

Thanks for you notes of support yesterday. Today went fairly well.

There will be no rush to ablate anyway. That is good Will post a

note with lab results etc. when I receive them.

> > Hi everyone,

> > I am a new member and have been lurking for a few days

> now, my

> > timing on that not so good. I was diagnosed with Graves

> desease about

> > 2 years ago. At that time I was given three options of treatment.

> > Thyroid drugs(MME), ablation or surgury. I chose the drug and

> did

> > quite well for that year. My main symptoms were jitters and

> heart

> > palpatations and they stayed under control. After about 16

> months, I

> > was weaned off the drug and my levels remained normal for a

> few

> > months after. I had a relapse at that time and was told to go

> back on

> > 10mg of MME until the next appointment. For some reason,

> there was no

> > next appointment so I stayed off and on my remaining MME.

> Since that

> > time my Primary care physician(new) had me see another

> endo. This was

> > about a month ago and she wanted to get my level normal

> before

> > scheduling RAI. I tried to tell her RAI was not for me so she

> gave me

> > a month to come to my senses. I am now on 10mg of Tapazole

> and again

> > responding well. I do not have my numbers but will be sure to

> get

> > them tomorrow.

> > During the first go-around with graves, I knew little and

trusted

> my

> > doctor. I only knew the the thyroid needed iodine and kelp had

> > iodine. I was told to go ahead and eat kelp if it made me happy.

> So

> > much for trust. Thanks to Elaine here and at Suite 101,

> and

> > ithyroid, Atomic Women, Shoman,Yahoo support groups

> and you all,

> > I have gained some knowledge. I have read about goitrogens,

> > bugleweed, motherwort, lemon balm, copper, magnesium,

> L-carnitine and

> > lately, lots on iodine. I will not have ablation done and there

in

> > lays my current problem. I have no idea what to say to the

> > endocrinologist tomorrow when she calls me a fool for not

> having RAI.

> > What should I ask for and reasonable expect to get? Can I ask

> for

> > tapizole, testing, results and nothing else like I want to

> > Thank you for any thoughts on the matter.

> >

[Guest guest]

Hi Elaine,

Thanks for you note of support and advise. I went fairly well armed

with several letters from this and other boards plus several

printouts from your wonderful write-ups on suite101. Saw two doctors.

First was young and quite receptive. One in charge has own ideas but

will not push me into ablation, at least not yet. She has no problem

with long term maintenance with Tapazole so long as the level is

under 10MG. She will not support such a program at 10mg or above. She

does sent copies of the labs each and every time as part of her SOP.

The lab work sheet did not, however call for antibody levels so near

as I can tell. The checks were for FT4 T3 and TSH. Not checked were

ATG and ANS. Other things were checked also. Not sure exactly what

but will see when the results arrive.

> Hi ,

> Glad you found the board, and the fur flying only happens about

once a year.

> What you're going through has happened to a lot of people, and

that " come to

> your senses thing " is heard all too often.

> Emphasize that you responded well to anti-thyroid drugs before and

that you

> want to continue on them. Ask for copies of your labs including

your antibody

> tests. I'm going to post an abstract a good friend sent me today

emphasizing

> the importance of antibody tests. While the article discusses

hypoT, it's

> encouraging to realize that the staid endos are catching up to what

the more

> holistic minded endos have been saying for a long time.

> Also, check out my friend Mike's page,

> www.webhome.idirect.com/~wolfnowl/thyroid.htm

> You might find his dealings with GD interesting. Take care, Elaine

>

>

>

[Guest guest]

Thanks ,

It sort of worked out that way. It all boils down to what I can do

to keep my tapazole intake low. If I can maintain normal levels at

less that 10mg of Tapazole per day, she will support long term

maintanance, otherwise not. I am at 10mg now and being careful with

kelp, beets, salt etc and eating more goitergenic(sp) stuff along

with lemon balm, L-carticine and other goodies, who knows. Will cross

that bridge when we come to it

> - My standard line to those early endos was: " I'm not

ready to make

> a permanent decision. " Who can argue with that? Present ATDs as

buying you

> more 'deciding time.'

>

>

>

>

> meeting with endo - HELP

>

>

> > Hi everyone,

> > I am a new member and have been lurking for a few days now, my

> > timing on that not so good. I was diagnosed with Graves desease

about

> > 2 years ago. At that time I was given three options of treatment.

> > Thyroid drugs(MME), ablation or surgury. I chose the drug and did

> > quite well for that year. My main symptoms were jitters and heart

> > palpatations and they stayed under control. After about 16

months, I

> > was weaned off the drug and my levels remained normal for a few

> > months after. I had a relapse at that time and was told to go

back on

> > 10mg of MME until the next appointment. For some reason, there

was no

> > next appointment so I stayed off and on my remaining MME. Since

that

> > time my Primary care physician(new) had me see another endo. This

was

> > about a month ago and she wanted to get my level normal before

> > scheduling RAI. I tried to tell her RAI was not for me so she

gave me

> > a month to come to my senses. I am now on 10mg of Tapazole and

again

> > responding well. I do not have my numbers but will be sure to get

> > them tomorrow.

> > During the first go-around with graves, I knew little and

trusted my

> > doctor. I only knew the the thyroid needed iodine and kelp had

> > iodine. I was told to go ahead and eat kelp if it made me happy.

So

> > much for trust. Thanks to Elaine here and at Suite 101, and

> > ithyroid, Atomic Women, Shoman,Yahoo support groups and you

all,

> > I have gained some knowledge. I have read about goitrogens,

> > bugleweed, motherwort, lemon balm, copper, magnesium, L-carnitine

and

> > lately, lots on iodine. I will not have ablation done and there in

> > lays my current problem. I have no idea what to say to the

> > endocrinologist tomorrow when she calls me a fool for not having

RAI.

> > What should I ask for and reasonable expect to get? Can I ask for

> > tapizole, testing, results and nothing else like I want to

> > Thank you for any thoughts on the matter.

> >

> >

> >

> >

> >

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

> > 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 ,

> Welcome to the group!

>

> As for how to respond to your endo, just let her know that you are

> responding to the ATD's again, that ablation is NOT an option for

you, tell

> her that you intend to be fully involved with your treatment and

you are not

> making this decision lightly.

>

> It is your body , and drs. can not force us to do things

that we

> don't want done, it is okay to just say no to RAI and be

comfortable with

> yourself for doing it. Your dr. may not want to treat you and may

> tell/suggest that you find another dr., if that is the case (which

I doubt

> she will do) you can go to this url and click on your state and see

who may

> be in your area that is recommended by other patients. This is

where I

> found my current endo and I love her to death, even when we don't

always

> agree on things I do make a 2 hour drive to see her, but it is

well

> worth it!

>

> http://thyroid.about.com/library/weekly/bldoc1.htm

>

> If you are in the states I don't believe your dr. can refuse to

treat you

> until you have found someone new. I think if she refuses to

continue to

> treat you with your ATD's you can turn her in, but I don't remember

to

> who/where, state insurance board maybe?

>

> A note on my new doc, she does not use RAI except as a last resort

or with

> thyroid cancer, she will perscribe Armour, and I am hoping I can

soon get

> her to do a compound perscription of my thyroid replacement

hormone. When

> she told me about RAI, I knew I would like her, there are endos

coming

> around to understand there is much more to this disease than just

nuking our

> thyroids, some are finally understanding this is NOT a disease of

the

> thyroid but a disease of the immune system. Like I said recently,

why kill

> the messenger?

>

> Again, welcome to the group and good luck tomorrow. Stand your

ground as

> you have made up your mind and it is your body and please, let us

know

> tomorrow how it goes.

> Take care,

> Jody

>

> _________________________________________________________________

> Get your FREE download of MSN Explorer at

http://explorer.msn.com/intl.asp

[Guest guest]

Hi Jody,

Thanks for you letter and support. What happened was no pressure for

RAI in the forseeable future. The catch being, I must get Tapazole

intake to under 10mg per day for the Dr's support of long-term

Tapazole maintenance. Will be getting lab reports early next week via

snail mail and will post results and doctors edict then.

.

PS. Sorry, hit sent inadvertantly.

> Hi ,

> Welcome to the group!

>

> As for how to respond to your endo, just let her know that you are

> responding to the ATD's again, that ablation is NOT an option for

you, tell

> her that you intend to be fully involved with your treatment and

you are not

> making this decision lightly.

>

> It is your body , and drs. can not force us to do things

that we

> don't want done, it is okay to just say no to RAI and be

comfortable with

> yourself for doing it. Your dr. may not want to treat you and may

> tell/suggest that you find another dr., if that is the case (which

I doubt

> she will do) you can go to this url and click on your state and see

who may

> be in your area that is recommended by other patients. This is

where I

> found my current endo and I love her to death, even when we don't

always

> agree on things I do make a 2 hour drive to see her, but it is

well

> worth it!

>

> http://thyroid.about.com/library/weekly/bldoc1.htm

>

> If you are in the states I don't believe your dr. can refuse to

treat you

> until you have found someone new. I think if she refuses to

continue to

> treat you with your ATD's you can turn her in, but I don't remember

to

> who/where, state insurance board maybe?

>

> A note on my new doc, she does not use RAI except as a last resort

or with

> thyroid cancer, she will perscribe Armour, and I am hoping I can

soon get

> her to do a compound perscription of my thyroid replacement

hormone. When

> she told me about RAI, I knew I would like her, there are endos

coming

> around to understand there is much more to this disease than just

nuking our

> thyroids, some are finally understanding this is NOT a disease of

the

> thyroid but a disease of the immune system. Like I said recently,

why kill

> the messenger?

>

> Again, welcome to the group and good luck tomorrow. Stand your

ground as

> you have made up your mind and it is your body and please, let us

know

> tomorrow how it goes.

> Take care,

> Jody

>

> _________________________________________________________________

> Get your FREE download of MSN Explorer at

http://explorer.msn.com/intl.asp

[Guest guest]

Hi ,

I'm glad she isn't pushing so hard for the RAI! Did you get your labs done

in the office or at a hospital or satellite lab? In NY we sign a statement

of release once a year and we can pick up our labs, usually within 48 hours

(except for FT3 as that is sent out) so I never have to wait for the results

from the doc. I usually have them before they have had a chance to look at

them. Makes it pretty good if I want to increase or decrease my dose

because of how I am feeling and the labs support me.

Hang in here with us!

Take care,

Jody

_________________________________________________________________

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

[Guest guest]

:

This may be redundant, as I probably missed someone else posting it. My

endo told me that statistically, the longer a patient is on ATDs, the

higher the chance for remission. The timeframe he mentioned was 18-24 mos.

Other endos only wanted me to try meds for one year, but I decided that I

would commit to it for the long haul.

Good luck.

[Guest guest]

Hi ,

No, it is not redundant and I thank you. My first go-around, the

doctor just about said " OK, the year is up, lets get you off the MME

and see what happens. " The results were predictable if I only saw it.

This time around I shall not let endo textbook be the judge :)Hope

all is well with you, thanks.

> :

>

> This may be redundant, as I probably missed someone else posting

it. My

> endo told me that statistically, the longer a patient is on ATDs,

the

> higher the chance for remission. The timeframe he mentioned was 18-

24 mos.

> Other endos only wanted me to try meds for one year, but I decided

that I

> would commit to it for the long haul.

>

> Good luck.

>

>

[Guest guest]

Hi Jody,

I'm glad about not being pushed also. This way our relationship will

last more than a day. The doctor and the lab are in Boston Medical

Center. She said the result take about 4 days and she will sent out

the results along with a letter with recomendations(orders) at that

time. The tests are FT4, T3, and TSH. I will post them when they

arrive maybe Tuesday, maybe later. I do not know it we have the same

system as NY. It this arrangement proves flawed, I will check. Thank

you.

> Hi ,

> I'm glad she isn't pushing so hard for the RAI! Did you get your

labs done

> in the office or at a hospital or satellite lab? In NY we sign a

statement

> of release once a year and we can pick up our labs, usually within

48 hours

> (except for FT3 as that is sent out) so I never have to wait for

the results

> from the doc. I usually have them before they have had a chance to

look at

> them. Makes it pretty good if I want to increase or decrease my

dose

> because of how I am feeling and the labs support me.

>

> Hang in here with us!

> Take care,

> Jody

>

> _________________________________________________________________

> Get your FREE download of MSN Explorer at

http://explorer.msn.com/intl.asp

[Guest guest]

,

I've been on Tap/methimazole for most of the last 7 years, no ill effects.

Had one fairly short remission and am definitely headed in that direction

again, down to 5 mg. daily and sometimes feeling like I don't need it--but

when I dropped the dose further, I felt the symptoms coming back.

One thing that did happen to me, fyi, is that after the short remission it

took a while to get the dose reduced down to 10 mg., get the symptoms back

under control. Once I got there, I stayed at 10 for a very short time before

I was (to me) obviously hypo. My secret strategy is to adjust my dosage,

without the endo's help, based on my body's cues. Although I tell him later.

Oh--I also neglect to mention that he should write me a new prescription for

a lesser dose, so I get 15mg/day still, and am " ahead " by several months

just in case I need it sometime. Cheaper that way, too, as the ins. copay is

the same!

Terry

> From: galdalf@...

> Reply-To: graves_support

> Date: Fri, 07 Sep 2001 03:25:39 -0000

> To: graves_support

> Subject: Re: meeting with endo - HELP

>

> Hi ,

> No, it is not redundant and I thank you. My first go-around, the

> doctor just about said " OK, the year is up, lets get you off the MME

> and see what happens. " The results were predictable if I only saw it.

> This time around I shall not let endo textbook be the judge :)Hope

> all is well with you, thanks.

>

>

>

>> :

>>

>> This may be redundant, as I probably missed someone else posting

> it. My

>> endo told me that statistically, the longer a patient is on ATDs,

> the

>> higher the chance for remission. The timeframe he mentioned was 18-

> 24 mos.

>> Other endos only wanted me to try meds for one year, but I decided

> that I

>> would commit to it for the long haul.

>>

>> Good luck.

>>

>>

>

>

>

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

> 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 ,

You might not have gotten the usual big welcome, but you did join

up at a very busy time. Good to meet you and i hope you get what you

came here for! I think you will find it is usually a good place to be.

> Thank you Terry. I think the ratio is about 8 to 1. I am not

in " high

> risk " by sex, age, or heredity factors, but managed to get it

anyway:)

>