Re: Endo visit

[Guest guest]

Laurel,

I guess the cat is out of the bag now.....yes, you are one of the

crazies....and I mailed you your decoder ring today so that us crazies can

secretly communicate! <grin>

Seriously though, I'm sure you are disappointed with your appointment. His

lack of knowledge and insensitivity should not deter you though...you KNOW

better! I know it feels like you are swimming upstream at the moment, but

the payoff will be so worth all the effort you are putting in.

There are knowledgable docs out there, that know how to help. It's just a

matter of finding one. Forgive me as I can't remember, have you tried one of

the Endo's on the About.com Top Doc's list?

Let me take this time to also tell you how much I've enjoyed your informative

posts...it seems you're always teaching me something!

A fellow crazie,

Doris

[Guest guest]

Laurel,

I guess the cat is out of the bag now.....yes, you are one of the

crazies....and I mailed you your decoder ring today so that us crazies can

secretly communicate! <grin>

Seriously though, I'm sure you are disappointed with your appointment. His

lack of knowledge and insensitivity should not deter you though...you KNOW

better! I know it feels like you are swimming upstream at the moment, but

the payoff will be so worth all the effort you are putting in.

There are knowledgable docs out there, that know how to help. It's just a

matter of finding one. Forgive me as I can't remember, have you tried one of

the Endo's on the About.com Top Doc's list?

Let me take this time to also tell you how much I've enjoyed your informative

posts...it seems you're always teaching me something!

A fellow crazie,

Doris

[Guest guest]

Laurel,

I guess the cat is out of the bag now.....yes, you are one of the

crazies....and I mailed you your decoder ring today so that us crazies can

secretly communicate! <grin>

Seriously though, I'm sure you are disappointed with your appointment. His

lack of knowledge and insensitivity should not deter you though...you KNOW

better! I know it feels like you are swimming upstream at the moment, but

the payoff will be so worth all the effort you are putting in.

There are knowledgable docs out there, that know how to help. It's just a

matter of finding one. Forgive me as I can't remember, have you tried one of

the Endo's on the About.com Top Doc's list?

Let me take this time to also tell you how much I've enjoyed your informative

posts...it seems you're always teaching me something!

A fellow crazie,

Doris

[Guest guest]

Hi Laurel,

You might want to remind your doctor that he can run a test for

thyroglobulin. If you have any active follicular cells still left, you will

have measurable thyroglobulin. Thyroid hormone doesn't interfere with the

test. Even with my whopping dose of Armour, my thyroglobulin level is <2. I

have to wonder what test he had in mind. Certainly he wasn't thinking of

measuring your thyroid hormone levels.

Hopefully, he'll learn something from you. By his reaction, I have to wonder

how much he knows about thyroid antibody testing. Take care, Elaine

[Guest guest]

Hi Laurel,

You might want to remind your doctor that he can run a test for

thyroglobulin. If you have any active follicular cells still left, you will

have measurable thyroglobulin. Thyroid hormone doesn't interfere with the

test. Even with my whopping dose of Armour, my thyroglobulin level is <2. I

have to wonder what test he had in mind. Certainly he wasn't thinking of

measuring your thyroid hormone levels.

Hopefully, he'll learn something from you. By his reaction, I have to wonder

how much he knows about thyroid antibody testing. Take care, Elaine

[Guest guest]

Hi Laurel,

You might want to remind your doctor that he can run a test for

thyroglobulin. If you have any active follicular cells still left, you will

have measurable thyroglobulin. Thyroid hormone doesn't interfere with the

test. Even with my whopping dose of Armour, my thyroglobulin level is <2. I

have to wonder what test he had in mind. Certainly he wasn't thinking of

measuring your thyroid hormone levels.

Hopefully, he'll learn something from you. By his reaction, I have to wonder

how much he knows about thyroid antibody testing. Take care, Elaine

[Guest guest]

" His answer to the multiple problems that have occured since the RAI is that

I'm growing old. "

Hi Laurel-

This is precisely the kind of attitude that makes me afraid of growing older

after RAI. I was very lucky in that I was having visible physical problems

in my late 20s and early 30s. So they couldn't dismiss them but it was very

difficult for them to figure out what was going on. Thank goodness, because

if I would have been older, I'm sure my problems would have been dismissed.

Just like they're starting to dismiss the infertility now.

Take care,

[Guest guest]

" His answer to the multiple problems that have occured since the RAI is that

I'm growing old. "

Hi Laurel-

This is precisely the kind of attitude that makes me afraid of growing older

after RAI. I was very lucky in that I was having visible physical problems

in my late 20s and early 30s. So they couldn't dismiss them but it was very

difficult for them to figure out what was going on. Thank goodness, because

if I would have been older, I'm sure my problems would have been dismissed.

Just like they're starting to dismiss the infertility now.

Take care,

[Guest guest]

Laurel,

I know with my health plan (which is the insurance company too) they didn't

want to do the antibody tests because the treatment to them, whether it is

graves or not, is the same. We know why it is important, but they don't

care. So in their mind, why pay for something to get a diagnosis, if the

treatment is the same.

I kept pushing until I got the lab slips.

I hope this helps,

Deb

[Guest guest]

Laurel,

I know with my health plan (which is the insurance company too) they didn't

want to do the antibody tests because the treatment to them, whether it is

graves or not, is the same. We know why it is important, but they don't

care. So in their mind, why pay for something to get a diagnosis, if the

treatment is the same.

I kept pushing until I got the lab slips.

I hope this helps,

Deb

[Guest guest]

Laurel,

I know with my health plan (which is the insurance company too) they didn't

want to do the antibody tests because the treatment to them, whether it is

graves or not, is the same. We know why it is important, but they don't

care. So in their mind, why pay for something to get a diagnosis, if the

treatment is the same.

I kept pushing until I got the lab slips.

I hope this helps,

Deb

[Guest guest]

Laurel,

The antibodies test wouldn't serve any purpose for him, but it would serve

you purpose, like being monitered for other autoimmune dieseases and GO, etc.

If he refuses, pay for it yourself and turn in the bill to your insurance

company with a letter explaining what your doctor said, with the lab results

and past lab work so you can show that there was a need. Maybe they will

reimburse you. If not you will have your diagnosis, and you can throw it at

him. (nicely of course!)

I hope this helps!

Deb

[Guest guest]

Laurel,

The antibodies test wouldn't serve any purpose for him, but it would serve

you purpose, like being monitered for other autoimmune dieseases and GO, etc.

If he refuses, pay for it yourself and turn in the bill to your insurance

company with a letter explaining what your doctor said, with the lab results

and past lab work so you can show that there was a need. Maybe they will

reimburse you. If not you will have your diagnosis, and you can throw it at

him. (nicely of course!)

I hope this helps!

Deb

[Guest guest]

Laurel,

The antibodies test wouldn't serve any purpose for him, but it would serve

you purpose, like being monitered for other autoimmune dieseases and GO, etc.

If he refuses, pay for it yourself and turn in the bill to your insurance

company with a letter explaining what your doctor said, with the lab results

and past lab work so you can show that there was a need. Maybe they will

reimburse you. If not you will have your diagnosis, and you can throw it at

him. (nicely of course!)

I hope this helps!

Deb

[Guest guest]

Doris,

YOU are a certified loony. And I love it! Can't wait for the decoder ring.

Will it glow in the dark?

Thanks for the giggle. I needed that.

Laurel

Re: Endo visit

Laurel,

I guess the cat is out of the bag now.....yes, you are one of the

crazies....and I mailed you your decoder ring today so that us crazies can

secretly communicate! <grin>

Seriously though, I'm sure you are disappointed with your appointment. His

lack of knowledge and insensitivity should not deter you though...you KNOW

better! I know it feels like you are swimming upstream at the moment, but

the payoff will be so worth all the effort you are putting in.

There are knowledgable docs out there, that know how to help. It's just a

matter of finding one. Forgive me as I can't remember, have you tried one of

the Endo's on the About.com Top Doc's list?

Let me take this time to also tell you how much I've enjoyed your informative

posts...it seems you're always teaching me something!

A fellow crazie,

Doris

[Guest guest]

Doris,

YOU are a certified loony. And I love it! Can't wait for the decoder ring.

Will it glow in the dark?

Thanks for the giggle. I needed that.

Laurel

Re: Endo visit

Laurel,

I guess the cat is out of the bag now.....yes, you are one of the

crazies....and I mailed you your decoder ring today so that us crazies can

secretly communicate! <grin>

Seriously though, I'm sure you are disappointed with your appointment. His

lack of knowledge and insensitivity should not deter you though...you KNOW

better! I know it feels like you are swimming upstream at the moment, but

the payoff will be so worth all the effort you are putting in.

There are knowledgable docs out there, that know how to help. It's just a

matter of finding one. Forgive me as I can't remember, have you tried one of

the Endo's on the About.com Top Doc's list?

Let me take this time to also tell you how much I've enjoyed your informative

posts...it seems you're always teaching me something!

A fellow crazie,

Doris

[Guest guest]

Doris,

YOU are a certified loony. And I love it! Can't wait for the decoder ring.

Will it glow in the dark?

Thanks for the giggle. I needed that.

Laurel

Re: Endo visit

Laurel,

I guess the cat is out of the bag now.....yes, you are one of the

crazies....and I mailed you your decoder ring today so that us crazies can

secretly communicate! <grin>

Seriously though, I'm sure you are disappointed with your appointment. His

lack of knowledge and insensitivity should not deter you though...you KNOW

better! I know it feels like you are swimming upstream at the moment, but

the payoff will be so worth all the effort you are putting in.

There are knowledgable docs out there, that know how to help. It's just a

matter of finding one. Forgive me as I can't remember, have you tried one of

the Endo's on the About.com Top Doc's list?

Let me take this time to also tell you how much I've enjoyed your informative

posts...it seems you're always teaching me something!

A fellow crazie,

Doris

[Guest guest]

,

Your problems are NOT related to age. I'm told by friends who work in OB-GYN

that women are safely having babies into their mid to late forties. Its just

too easy to pass problems we have off as age related. I just think that most

physicians are unused to dealing with anything out of the ordinary and are

willing to dismiss difficult cases as their percentage of lost ones.

I know you don't want to be lost and neither do I. I guess we just keep trying.

I would like to think that there is still a lot of life to live. I would like

to think that someone as good and kind as you will have another beloved child.

I won't quit if you don't.

Laurel

Re: Endo visit

" His answer to the multiple problems that have occured since the RAI is that

I'm growing old. "

Hi Laurel-

This is precisely the kind of attitude that makes me afraid of growing older

after RAI. I was very lucky in that I was having visible physical problems

in my late 20s and early 30s. So they couldn't dismiss them but it was very

difficult for them to figure out what was going on. Thank goodness, because

if I would have been older, I'm sure my problems would have been dismissed.

Just like they're starting to dismiss the infertility now.

Take care,

-------------------------------------

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.

----------------------------------------

DISCLAIMER

Advertisments placed on this yahoo groups list does not have the endorsement of

the listowner. I have no input as to what ads are attached to emails.

--------------------------------------------------------------------------------\

------

[Guest guest]

,

Your problems are NOT related to age. I'm told by friends who work in OB-GYN

that women are safely having babies into their mid to late forties. Its just

too easy to pass problems we have off as age related. I just think that most

physicians are unused to dealing with anything out of the ordinary and are

willing to dismiss difficult cases as their percentage of lost ones.

I know you don't want to be lost and neither do I. I guess we just keep trying.

I would like to think that there is still a lot of life to live. I would like

to think that someone as good and kind as you will have another beloved child.

I won't quit if you don't.

Laurel

Re: Endo visit

" His answer to the multiple problems that have occured since the RAI is that

I'm growing old. "

Hi Laurel-

This is precisely the kind of attitude that makes me afraid of growing older

after RAI. I was very lucky in that I was having visible physical problems

in my late 20s and early 30s. So they couldn't dismiss them but it was very

difficult for them to figure out what was going on. Thank goodness, because

if I would have been older, I'm sure my problems would have been dismissed.

Just like they're starting to dismiss the infertility now.

Take care,

-------------------------------------

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.

----------------------------------------

DISCLAIMER

Advertisments placed on this yahoo groups list does not have the endorsement of

the listowner. I have no input as to what ads are attached to emails.

--------------------------------------------------------------------------------\

------

[Guest guest]

Dear Elaine,

Not much I think. He was vehement that I would have to be off synthroid, or

later he said I'd have to take half doses for a while, before he could run

thyroglobulin levels. I questioned that and he stuck to his story. He was also

absolute in his position that he would not run antibody levels because it

wouldn't serve any purpose. I told him that I wanted them so that I would know.

He said he wouldn't run them because it would serve no purpose. (Insert this is

a recording)

And BTW it occurs to me that if we are loony you must be the craziest of all. I

like that.

Laurel

Re: Endo visit

Hi Laurel,

You might want to remind your doctor that he can run a test for

thyroglobulin. If you have any active follicular cells still left, you will

have measurable thyroglobulin. Thyroid hormone doesn't interfere with the

test. Even with my whopping dose of Armour, my thyroglobulin level is <2. I

have to wonder what test he had in mind. Certainly he wasn't thinking of

measuring your thyroid hormone levels.

Hopefully, he'll learn something from you. By his reaction, I have to wonder

how much he knows about thyroid antibody testing. Take care, Elaine

[Guest guest]

Dear Elaine,

Not much I think. He was vehement that I would have to be off synthroid, or

later he said I'd have to take half doses for a while, before he could run

thyroglobulin levels. I questioned that and he stuck to his story. He was also

absolute in his position that he would not run antibody levels because it

wouldn't serve any purpose. I told him that I wanted them so that I would know.

He said he wouldn't run them because it would serve no purpose. (Insert this is

a recording)

And BTW it occurs to me that if we are loony you must be the craziest of all. I

like that.

Laurel

Re: Endo visit

Hi Laurel,

You might want to remind your doctor that he can run a test for

thyroglobulin. If you have any active follicular cells still left, you will

have measurable thyroglobulin. Thyroid hormone doesn't interfere with the

test. Even with my whopping dose of Armour, my thyroglobulin level is <2. I

have to wonder what test he had in mind. Certainly he wasn't thinking of

measuring your thyroid hormone levels.

Hopefully, he'll learn something from you. By his reaction, I have to wonder

how much he knows about thyroid antibody testing. Take care, Elaine

[Guest guest]

Dear Elaine,

Not much I think. He was vehement that I would have to be off synthroid, or

later he said I'd have to take half doses for a while, before he could run

thyroglobulin levels. I questioned that and he stuck to his story. He was also

absolute in his position that he would not run antibody levels because it

wouldn't serve any purpose. I told him that I wanted them so that I would know.

He said he wouldn't run them because it would serve no purpose. (Insert this is

a recording)

And BTW it occurs to me that if we are loony you must be the craziest of all. I

like that.

Laurel

Re: Endo visit

Hi Laurel,

You might want to remind your doctor that he can run a test for

thyroglobulin. If you have any active follicular cells still left, you will

have measurable thyroglobulin. Thyroid hormone doesn't interfere with the

test. Even with my whopping dose of Armour, my thyroglobulin level is <2. I

have to wonder what test he had in mind. Certainly he wasn't thinking of

measuring your thyroid hormone levels.

Hopefully, he'll learn something from you. By his reaction, I have to wonder

how much he knows about thyroid antibody testing. Take care, Elaine

[Guest guest]

--- geneva248 wrote:

> Hey Group,

>

> Had an appointment today with my third endo.

> Thought you'd

> appreciate some of the highpoints. First he told me

> that its

> impossible to test for remaining active thyroid

> tissue because it

> wold involve a period of time off synthroid and, of

> course it would

> precipitate hypo symptoms and " you wouldn't want

> that. " Then he told

> me that he wouldn't test for antibody levels because

> " that's not

> done. " " Its only done by those crazies " by which I

> can only deduce

> he means the likes of us. When asked what the last

> bloodwork levels

> were (you might remember the ones I had to fight to

> have drawn and

> then was told they were " a little high " ) he would

> only respond " a

> little high. " So I asked him for copies of

> everything, all of the

> labs to which he agreed but would need a day or two

> to have them

> copied.

>

> The only bright spot here is that, although he

> thinks what happened

> to me was " very rare " (hah, sure)he claims he is now

> warning his RAI

> patients that complications such as GO and the rest

> can happen with a

> diagnosis of multinodular goiter. I mentioned to

> him that perhaps I

> had Graves/Hashimoto's all along and he couldn't

> dispute that. Still

> only crazies test the antibodies. Wonder how one

> gets a clear

> diagnosis? Well he says its not necessary because

> it doesn't really

> change anything.

>

> His answer to the multiple problems that have

> occured since the RAI

> is that I'm growing old. Right. 54 is not a kid

> but until I had RAI

> I was working out for an hour three times a week,

> juggling work and

> home, and doing reasonably well thanks-very-much.

> Does he hold out

> any hope for the future? Well........I could try a

> major medical

> facility like Cleveland Clinic but, according to

> him, most people are

> not satisfied with the results they acheive either.

>

>

> I might add that during all this the poor man seemed

> quite anxious.

> I'm not sure what that was all about but perhaps I'm

> getting a

> reputation for being " one of the crazies. " If so

> then thanks to all

> of you for providing credentials in this very

> exclusive club.

>

> In other words I'd rather be nuts with you guys than

> hopeless with

> the sane folks. Because if I believe this guy, I'm

> stuck with wierd

> eyes and a funky heartbeat and fatigue and pain for

> the rest of my

> miserable life. With you guys there is

> encouragment, empowerment and

> hope.

> Thanks for being there.

> Laurel

>

>

>

[Guest guest]

--- geneva248 wrote:

> Hey Group,

>

> Had an appointment today with my third endo.

> Thought you'd

> appreciate some of the highpoints. First he told me

> that its

> impossible to test for remaining active thyroid

> tissue because it

> wold involve a period of time off synthroid and, of

> course it would

> precipitate hypo symptoms and " you wouldn't want

> that. " Then he told

> me that he wouldn't test for antibody levels because

> " that's not

> done. " " Its only done by those crazies " by which I

> can only deduce

> he means the likes of us. When asked what the last

> bloodwork levels

> were (you might remember the ones I had to fight to

> have drawn and

> then was told they were " a little high " ) he would

> only respond " a

> little high. " So I asked him for copies of

> everything, all of the

> labs to which he agreed but would need a day or two

> to have them

> copied.

>

> The only bright spot here is that, although he

> thinks what happened

> to me was " very rare " (hah, sure)he claims he is now

> warning his RAI

> patients that complications such as GO and the rest

> can happen with a

> diagnosis of multinodular goiter. I mentioned to

> him that perhaps I

> had Graves/Hashimoto's all along and he couldn't

> dispute that. Still

> only crazies test the antibodies. Wonder how one

> gets a clear

> diagnosis? Well he says its not necessary because

> it doesn't really

> change anything.

>

> His answer to the multiple problems that have

> occured since the RAI

> is that I'm growing old. Right. 54 is not a kid

> but until I had RAI

> I was working out for an hour three times a week,

> juggling work and

> home, and doing reasonably well thanks-very-much.

> Does he hold out

> any hope for the future? Well........I could try a

> major medical

> facility like Cleveland Clinic but, according to

> him, most people are

> not satisfied with the results they acheive either.

>

>

> I might add that during all this the poor man seemed

> quite anxious.

> I'm not sure what that was all about but perhaps I'm

> getting a

> reputation for being " one of the crazies. " If so

> then thanks to all

> of you for providing credentials in this very

> exclusive club.

>

> In other words I'd rather be nuts with you guys than

> hopeless with

> the sane folks. Because if I believe this guy, I'm

> stuck with wierd

> eyes and a funky heartbeat and fatigue and pain for

> the rest of my

> miserable life. With you guys there is

> encouragment, empowerment and

> hope.

> Thanks for being there.

> Laurel

>

>

>

[Guest guest]

Hey Deb,

Thanks. I didn't know that you could do that. Figured you had to have a script

from a doctor somewhere. On second thought maybe I'll try to con my FP into it.

He will do anything. And he tries so hard and is a real sweetie.

I've already gotten an appointment with somebody else. He was just to

conservative and (read cheap) cost effective for the insurance company. So I'm

hoping that the new one doesn't think craziness is the same as trying to lose

the sick role.

It occurred to me that none of us on this list seem comfortable in the " sick

role " which is what some anthropologists call people who fill a function in

their society by being ill. Interesting that we seem to be such a strong lot,

willing to take on a fight if it means getting over this stuff.

Laurel

Re: Endo visit

Laurel,

The antibodies test wouldn't serve any purpose for him, but it would serve

you purpose, like being monitered for other autoimmune dieseases and GO, etc.

If he refuses, pay for it yourself and turn in the bill to your insurance

company with a letter explaining what your doctor said, with the lab results

and past lab work so you can show that there was a need. Maybe they will

reimburse you. If not you will have your diagnosis, and you can throw it at

him. (nicely of course!)

I hope this helps!

Deb