Re: PTU vs. Tap

[Guest guest]

Hi, Jody,

I forgot to mention that the first doctor (the one who pushed for RAI) had

put Amy on PTU for about three weeks BEFORE he saw her. She showed a decline

in her WBC count so we stopped for two weeks before seeing the new doctor.

He is hopeful (as are we) that she won't react to the new drug, but thanks

for the tip on fillers. I hadn't thought of that.

Amy's Pam

In a message dated 2/22/2002 10:15:50 PM Central Standard Time,

luckystrike@... writes:

> Hi Amy's Mom,

> If she should have a reaction to TAP, the doctor can try her with PTU. When

>

> we react to one of the drugs negatively, we can usually use the other one.

>

> On rare occassions some people can not take either. I also think, in the

> archives from over a year ago, there was a discussion on this, and that

> sometimes it is the fillers in the TAP or PTU that people react too also.

> Jody

I want to be the kind of friend Jesus would call, at the end of the day, just

to talk about nothing.-Wayne

[Guest guest]

Hi, Jody,

I forgot to mention that the first doctor (the one who pushed for RAI) had

put Amy on PTU for about three weeks BEFORE he saw her. She showed a decline

in her WBC count so we stopped for two weeks before seeing the new doctor.

He is hopeful (as are we) that she won't react to the new drug, but thanks

for the tip on fillers. I hadn't thought of that.

Amy's Pam

In a message dated 2/22/2002 10:15:50 PM Central Standard Time,

luckystrike@... writes:

> Hi Amy's Mom,

> If she should have a reaction to TAP, the doctor can try her with PTU. When

>

> we react to one of the drugs negatively, we can usually use the other one.

>

> On rare occassions some people can not take either. I also think, in the

> archives from over a year ago, there was a discussion on this, and that

> sometimes it is the fillers in the TAP or PTU that people react too also.

> Jody

I want to be the kind of friend Jesus would call, at the end of the day, just

to talk about nothing.-Wayne

[Guest guest]

Hi, Jody,

I forgot to mention that the first doctor (the one who pushed for RAI) had

put Amy on PTU for about three weeks BEFORE he saw her. She showed a decline

in her WBC count so we stopped for two weeks before seeing the new doctor.

He is hopeful (as are we) that she won't react to the new drug, but thanks

for the tip on fillers. I hadn't thought of that.

Amy's Pam

In a message dated 2/22/2002 10:15:50 PM Central Standard Time,

luckystrike@... writes:

> Hi Amy's Mom,

> If she should have a reaction to TAP, the doctor can try her with PTU. When

>

> we react to one of the drugs negatively, we can usually use the other one.

>

> On rare occassions some people can not take either. I also think, in the

> archives from over a year ago, there was a discussion on this, and that

> sometimes it is the fillers in the TAP or PTU that people react too also.

> Jody

I want to be the kind of friend Jesus would call, at the end of the day, just

to talk about nothing.-Wayne

[Guest guest]

Hi Amy's Pam,

I shall try to remain calm while I write this.

It seems to be common for doctors who wish to push RAI, to NOT check WBC. Then

start

ATDs ( anti thyroid drugs), then do a WBC and CLAIM that the ATD is at fault !

This is not

true. You have no way of knowing that this is a fact, because being hyper causes

a lower

WBC ! This is why it is very important to do it BEFORE the drugs are started.

You need a

baseline to compare to.

If the past doctor put your child on PTU without seeing her, is it safe to

guess that he

did not do a WBC before medication was started ? This is important for you to

know, so if

for some reason Amy does not tolerate the TAP, you are not ruling out the PTU

unnecessarily.( can we just all go over there and smack this guy...now his

mistreatment

could have meant one less option to this child, if her mother was not so smart)

So copies of all lab results ARE important......for more and more reasons.

As far as the difference between being plain old hyper or having Graves, it is

too soon

for you to know, from what I am reading. I am guessing here, but it was my

experience,

that in the early stages, when I was seeing new doctors, they simply used the

term 'hyper'

to cover what I was going through, even though I had not had all the tests yet.

Kind of a

generic term, that simply covered both bases, at that point in time. It is

possible that

this is what you are hearing right now, so if I were you, I would not spend a

lot of time,

just now worrying about this part of everything.

Have you started to learn about diet in all of this yet ? The basics that have

turned out

to be a big part of my final miracle here, is low iodine, no junk, no boxed or

packaged

food. , no eating out, ...just plain REAL food. A bit extreme for some, but I

was

desperate. I believe it is MSG, cleverly discussed as 'flavorings' that has

causing some

of my problems. Along with my love of dairy products, which are high in iodine.

And of

course the wonderful seafood we have here in Oregon. <sigh>

-Pam- ( I just can not think of anything except 'old Pam', and I don't like the

sound of

that. LOL )

[Guest guest]

Hi Amy's Pam,

I shall try to remain calm while I write this.

It seems to be common for doctors who wish to push RAI, to NOT check WBC. Then

start

ATDs ( anti thyroid drugs), then do a WBC and CLAIM that the ATD is at fault !

This is not

true. You have no way of knowing that this is a fact, because being hyper causes

a lower

WBC ! This is why it is very important to do it BEFORE the drugs are started.

You need a

baseline to compare to.

If the past doctor put your child on PTU without seeing her, is it safe to

guess that he

did not do a WBC before medication was started ? This is important for you to

know, so if

for some reason Amy does not tolerate the TAP, you are not ruling out the PTU

unnecessarily.( can we just all go over there and smack this guy...now his

mistreatment

could have meant one less option to this child, if her mother was not so smart)

So copies of all lab results ARE important......for more and more reasons.

As far as the difference between being plain old hyper or having Graves, it is

too soon

for you to know, from what I am reading. I am guessing here, but it was my

experience,

that in the early stages, when I was seeing new doctors, they simply used the

term 'hyper'

to cover what I was going through, even though I had not had all the tests yet.

Kind of a

generic term, that simply covered both bases, at that point in time. It is

possible that

this is what you are hearing right now, so if I were you, I would not spend a

lot of time,

just now worrying about this part of everything.

Have you started to learn about diet in all of this yet ? The basics that have

turned out

to be a big part of my final miracle here, is low iodine, no junk, no boxed or

packaged

food. , no eating out, ...just plain REAL food. A bit extreme for some, but I

was

desperate. I believe it is MSG, cleverly discussed as 'flavorings' that has

causing some

of my problems. Along with my love of dairy products, which are high in iodine.

And of

course the wonderful seafood we have here in Oregon. <sigh>

-Pam- ( I just can not think of anything except 'old Pam', and I don't like the

sound of

that. LOL )

[Guest guest]

Hi Amy's Pam,

I shall try to remain calm while I write this.

It seems to be common for doctors who wish to push RAI, to NOT check WBC. Then

start

ATDs ( anti thyroid drugs), then do a WBC and CLAIM that the ATD is at fault !

This is not

true. You have no way of knowing that this is a fact, because being hyper causes

a lower

WBC ! This is why it is very important to do it BEFORE the drugs are started.

You need a

baseline to compare to.

If the past doctor put your child on PTU without seeing her, is it safe to

guess that he

did not do a WBC before medication was started ? This is important for you to

know, so if

for some reason Amy does not tolerate the TAP, you are not ruling out the PTU

unnecessarily.( can we just all go over there and smack this guy...now his

mistreatment

could have meant one less option to this child, if her mother was not so smart)

So copies of all lab results ARE important......for more and more reasons.

As far as the difference between being plain old hyper or having Graves, it is

too soon

for you to know, from what I am reading. I am guessing here, but it was my

experience,

that in the early stages, when I was seeing new doctors, they simply used the

term 'hyper'

to cover what I was going through, even though I had not had all the tests yet.

Kind of a

generic term, that simply covered both bases, at that point in time. It is

possible that

this is what you are hearing right now, so if I were you, I would not spend a

lot of time,

just now worrying about this part of everything.

Have you started to learn about diet in all of this yet ? The basics that have

turned out

to be a big part of my final miracle here, is low iodine, no junk, no boxed or

packaged

food. , no eating out, ...just plain REAL food. A bit extreme for some, but I

was

desperate. I believe it is MSG, cleverly discussed as 'flavorings' that has

causing some

of my problems. Along with my love of dairy products, which are high in iodine.

And of

course the wonderful seafood we have here in Oregon. <sigh>

-Pam- ( I just can not think of anything except 'old Pam', and I don't like the

sound of

that. LOL )

[Guest guest]

Hey Pam,

Could you tell me which white blood cell/cells are involved? And which

direction they are shifted? I have a sister who has a chronic and undiagnosed

(as to cause) lowered white count and I have just gotten the results of her most

recent CBC. She's at the other end of the country (SF Bay area) and has been

dealing with this for a couple of years with no real direction. She has

symptoms of a lot of stuff but who of us doesn't?

And, since my endo only did free T3 and T4 until I got exopthalmos and only then

did the autoimmune test (which I don't know and he never let me see the results)

could you please tell me which blood tests are usually ordered?

Really appreciate it.

Laurel

Re: PTU vs. Tap

Hi Amy's Pam,

I shall try to remain calm while I write this.

It seems to be common for doctors who wish to push RAI, to NOT check WBC. Then

start

ATDs ( anti thyroid drugs), then do a WBC and CLAIM that the ATD is at fault !

This is not

true. You have no way of knowing that this is a fact, because being hyper causes

a lower

WBC ! This is why it is very important to do it BEFORE the drugs are started.

You need a

baseline to compare to.

If the past doctor put your child on PTU without seeing her, is it safe to

guess that he

did not do a WBC before medication was started ? This is important for you to

know, so if

for some reason Amy does not tolerate the TAP, you are not ruling out the PTU

unnecessarily.( can we just all go over there and smack this guy...now his

mistreatment

could have meant one less option to this child, if her mother was not so smart)

So copies of all lab results ARE important......for more and more reasons.

As far as the difference between being plain old hyper or having Graves, it is

too soon

for you to know, from what I am reading. I am guessing here, but it was my

experience,

that in the early stages, when I was seeing new doctors, they simply used the

term 'hyper'

to cover what I was going through, even though I had not had all the tests yet.

Kind of a

generic term, that simply covered both bases, at that point in time. It is

possible that

this is what you are hearing right now, so if I were you, I would not spend a

lot of time,

just now worrying about this part of everything.

Have you started to learn about diet in all of this yet ? The basics that have

turned out

to be a big part of my final miracle here, is low iodine, no junk, no boxed or

packaged

food. , no eating out, ...just plain REAL food. A bit extreme for some, but I

was

desperate. I believe it is MSG, cleverly discussed as 'flavorings' that has

causing some

of my problems. Along with my love of dairy products, which are high in iodine.

And of

course the wonderful seafood we have here in Oregon. <sigh>

-Pam- ( I just can not think of anything except 'old Pam', and I don't like the

sound of

that. LOL )

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

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]

Hey Pam,

Could you tell me which white blood cell/cells are involved? And which

direction they are shifted? I have a sister who has a chronic and undiagnosed

(as to cause) lowered white count and I have just gotten the results of her most

recent CBC. She's at the other end of the country (SF Bay area) and has been

dealing with this for a couple of years with no real direction. She has

symptoms of a lot of stuff but who of us doesn't?

And, since my endo only did free T3 and T4 until I got exopthalmos and only then

did the autoimmune test (which I don't know and he never let me see the results)

could you please tell me which blood tests are usually ordered?

Really appreciate it.

Laurel

Re: PTU vs. Tap

Hi Amy's Pam,

I shall try to remain calm while I write this.

It seems to be common for doctors who wish to push RAI, to NOT check WBC. Then

start

ATDs ( anti thyroid drugs), then do a WBC and CLAIM that the ATD is at fault !

This is not

true. You have no way of knowing that this is a fact, because being hyper causes

a lower

WBC ! This is why it is very important to do it BEFORE the drugs are started.

You need a

baseline to compare to.

If the past doctor put your child on PTU without seeing her, is it safe to

guess that he

did not do a WBC before medication was started ? This is important for you to

know, so if

for some reason Amy does not tolerate the TAP, you are not ruling out the PTU

unnecessarily.( can we just all go over there and smack this guy...now his

mistreatment

could have meant one less option to this child, if her mother was not so smart)

So copies of all lab results ARE important......for more and more reasons.

As far as the difference between being plain old hyper or having Graves, it is

too soon

for you to know, from what I am reading. I am guessing here, but it was my

experience,

that in the early stages, when I was seeing new doctors, they simply used the

term 'hyper'

to cover what I was going through, even though I had not had all the tests yet.

Kind of a

generic term, that simply covered both bases, at that point in time. It is

possible that

this is what you are hearing right now, so if I were you, I would not spend a

lot of time,

just now worrying about this part of everything.

Have you started to learn about diet in all of this yet ? The basics that have

turned out

to be a big part of my final miracle here, is low iodine, no junk, no boxed or

packaged

food. , no eating out, ...just plain REAL food. A bit extreme for some, but I

was

desperate. I believe it is MSG, cleverly discussed as 'flavorings' that has

causing some

of my problems. Along with my love of dairy products, which are high in iodine.

And of

course the wonderful seafood we have here in Oregon. <sigh>

-Pam- ( I just can not think of anything except 'old Pam', and I don't like the

sound of

that. LOL )

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

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]

Hey Pam,

Could you tell me which white blood cell/cells are involved? And which

direction they are shifted? I have a sister who has a chronic and undiagnosed

(as to cause) lowered white count and I have just gotten the results of her most

recent CBC. She's at the other end of the country (SF Bay area) and has been

dealing with this for a couple of years with no real direction. She has

symptoms of a lot of stuff but who of us doesn't?

And, since my endo only did free T3 and T4 until I got exopthalmos and only then

did the autoimmune test (which I don't know and he never let me see the results)

could you please tell me which blood tests are usually ordered?

Really appreciate it.

Laurel

Re: PTU vs. Tap

Hi Amy's Pam,

I shall try to remain calm while I write this.

It seems to be common for doctors who wish to push RAI, to NOT check WBC. Then

start

ATDs ( anti thyroid drugs), then do a WBC and CLAIM that the ATD is at fault !

This is not

true. You have no way of knowing that this is a fact, because being hyper causes

a lower

WBC ! This is why it is very important to do it BEFORE the drugs are started.

You need a

baseline to compare to.

If the past doctor put your child on PTU without seeing her, is it safe to

guess that he

did not do a WBC before medication was started ? This is important for you to

know, so if

for some reason Amy does not tolerate the TAP, you are not ruling out the PTU

unnecessarily.( can we just all go over there and smack this guy...now his

mistreatment

could have meant one less option to this child, if her mother was not so smart)

So copies of all lab results ARE important......for more and more reasons.

As far as the difference between being plain old hyper or having Graves, it is

too soon

for you to know, from what I am reading. I am guessing here, but it was my

experience,

that in the early stages, when I was seeing new doctors, they simply used the

term 'hyper'

to cover what I was going through, even though I had not had all the tests yet.

Kind of a

generic term, that simply covered both bases, at that point in time. It is

possible that

this is what you are hearing right now, so if I were you, I would not spend a

lot of time,

just now worrying about this part of everything.

Have you started to learn about diet in all of this yet ? The basics that have

turned out

to be a big part of my final miracle here, is low iodine, no junk, no boxed or

packaged

food. , no eating out, ...just plain REAL food. A bit extreme for some, but I

was

desperate. I believe it is MSG, cleverly discussed as 'flavorings' that has

causing some

of my problems. Along with my love of dairy products, which are high in iodine.

And of

course the wonderful seafood we have here in Oregon. <sigh>

-Pam- ( I just can not think of anything except 'old Pam', and I don't like the

sound of

that. LOL )

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

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]

Hey, Pam,

How about " first " Pam? :-) Thank you so much for your insights and helpful

comments. I'll be checking into whether Amy's WBC was done initially. I was

always freaked out that they were putting her on PTU without a clear

diagnosis, but we were just freaked out in general, I think. Now we're

getting a little more together, I hope.

And, yes, I would love to smack those first docs who tried to frighten us

into RAI right away. They called us the day after the diagnosis came in,

claimed her WBC troubles spelled certain disaster, and wanted to set her up

in a few days' time for RAI. When we said we'd call them back the next

morning with an answer, they couldn't wait for us, but had to call AGAIN to

urge us to do RAI right away. They also made us feel that one particularly

high reading (a TSI of 318%) meant that she would never have any hope other

than RAI. It really stressed us out to say no to " the authority " in

children's health at the major hospital for children in KC, but we're

thankful we stood up to them.

After reading several comments on others about lab copies, we're planning to

call the new endo's office on Monday and have a note on Amy's chart that we

want copies of everything that they put in there. We already had to insist

on copies from the first docs. We're slowly learning.

And I really appreciate your comments about not getting too up in arms over

an exact diagnosis at this point. Your assessment sounds very reasonable and

I'm sure the new endo is just trying to quickly get a handle on our

daughter's health.

As to nutrition, we've always eaten pretty well, but not perfectly. We do

the majority of our cooking from scratch, and we've been conscious of healthy

eating for years. However, it's clearly not enough, and I'm convinced that

we need to make more changes. This is not going to appeal to Amy, who like

you, loves her dairy and salt and yes, the junkfood that comes into our house

mainly over the weekend. We're waiting to see some nutritional folks in

Kansas who specialize in the whole body with nutritional impact. I'm hopeful

that this will help.

And, finally, what part of Oregon do you live in? We lived in Medford for

three years and loved the coast when we could get there. We also loved the

cheap, high quality produce from that area. KC's quality and prices are

miserable.

Thanks again!

Amy's Pam

In a message dated 2/22/2002 11:27:45 PM Central Standard Time,

pladd@... writes:

> Hi Amy's Pam,

> I shall try to remain calm while I write this.

> It seems to be common for doctors who wish to push RAI, to NOT check WBC.

> Then start

> ATDs ( anti thyroid drugs), then do a WBC and CLAIM that the ATD is at

> fault ! This is not

> true. You have no way of knowing that this is a fact, because being hyper

> causes a lower

> WBC ! This is why it is very important to do it BEFORE the drugs are

> started. You need a

> baseline to compare to.

>

> If the past doctor put your child on PTU without seeing her, is it safe

> to guess that he

> did not do a WBC before medication was started ? This is important for you

> to know, so if

> for some reason Amy does not tolerate the TAP, you are not ruling out the

> PTU

> unnecessarily.( can we just all go over there and smack this guy...now his

> mistreatment

> could have meant one less option to this child, if her mother was not so

> smart)

>

> So copies of all lab results ARE important......for more and more

> reasons.

>

> As far as the difference between being plain old hyper or having Graves, it

> is too soon

> for you to know, from what I am reading. I am guessing here, but it was my

> experience,

> that in the early stages, when I was seeing new doctors, they simply used

> the term 'hyper'

> to cover what I was going through, even though I had not had all the tests

> yet. Kind of a

> generic term, that simply covered both bases, at that point in time. It is

> possible that

> this is what you are hearing right now, so if I were you, I would not spend

> a lot of time,

> just now worrying about this part of everything.

>

> Have you started to learn about diet in all of this yet ? The basics that

> have turned out

> to be a big part of my final miracle here, is low iodine, no junk, no boxed

> or packaged

> food. , no eating out, ...just plain REAL food. A bit extreme for some, but

> I was

> desperate. I believe it is MSG, cleverly discussed as 'flavorings' that has

> causing some

> of my problems. Along with my love of dairy products, which are high in

> iodine. And of

> course the wonderful seafood we have here in Oregon. <sigh>

>

> -Pam- ( I just can not think of anything except 'old Pam', and I don't like

> the sound of

> that. LOL )

I want to be the kind of friend Jesus would call, at the end of the day, just

to talk about nothing.-Wayne

[Guest guest]

Hey Laurel,

Well, I'm so new to this that I'm not sure I can help, but I'll list what I

have from the doctor's first lab draws.

Her first draw was a combination of CBC with differential/platelet a

comprehensive metabolic panel and thyroid panel. At this initial reading her

WBC count was a bit low, coming in at 3.8 with a range of 4.0 - 12.5.

Platelet count was 203. This was before we even suspected thyroid disease,

but were wondering why she'd nearly fainted one day. This draw was done on

1/9/02.

After the initial blood work came back our family doctor suspected a thyroid

disease and conferred with the endos at Children's Hospital about further

testing. Blood work was done and sent to the endo department while we

started PTU and waited to see the doctors on 2/5/02.

A third draw was done on 2/5/02. This time her WBC was down to 3.2 and her

platelet count was down to 144. This third draw was (perhaps?) more

elaborate than the first, was done at a hospital and read by a different lab.

They had another item called " ANC " that was 1.4 with a range of 1.8 - 7.2.

I couldn't find this first number on the first draw, but this is where the

first endos claimed she'd had a significant drop and used this information to

push for RAI, since they believed Amy wouldn't respond to any drug treatment.

Interestingly, I've now talked to a number of doctors/health professionals in

trying to find the right people to treat our daughter, and have yet to run

into a doctor who knows what ANC means. Perhaps Elaine could weigh in on

this question?

I wish I knew more, but let me know if this helps, or ask more questions.

Amy's Pam

In a message dated 2/22/2002 11:58:24 PM Central Standard Time,

Geneva248@... writes:

> Hey Pam,

>

> Could you tell me which white blood cell/cells are involved? And which

> direction they are shifted? I have a sister who has a chronic and

> undiagnosed (as to cause) lowered white count and I have just gotten the

> results of her most recent CBC. She's at the other end of the country (SF

> Bay area) and has been dealing with this for a couple of years with no real

> direction. She has symptoms of a lot of stuff but who of us doesn't?

>

> And, since my endo only did free T3 and T4 until I got exopthalmos and only

> then did the autoimmune test (which I don't know and he never let me see

> the results) could you please tell me which blood tests are usually

> ordered?

>

> Really appreciate it.

> Laurel

I want to be the kind of friend Jesus would call, at the end of the day, just

to talk about nothing.-Wayne

[Guest guest]

Hey Laurel,

Well, I'm so new to this that I'm not sure I can help, but I'll list what I

have from the doctor's first lab draws.

Her first draw was a combination of CBC with differential/platelet a

comprehensive metabolic panel and thyroid panel. At this initial reading her

WBC count was a bit low, coming in at 3.8 with a range of 4.0 - 12.5.

Platelet count was 203. This was before we even suspected thyroid disease,

but were wondering why she'd nearly fainted one day. This draw was done on

1/9/02.

After the initial blood work came back our family doctor suspected a thyroid

disease and conferred with the endos at Children's Hospital about further

testing. Blood work was done and sent to the endo department while we

started PTU and waited to see the doctors on 2/5/02.

A third draw was done on 2/5/02. This time her WBC was down to 3.2 and her

platelet count was down to 144. This third draw was (perhaps?) more

elaborate than the first, was done at a hospital and read by a different lab.

They had another item called " ANC " that was 1.4 with a range of 1.8 - 7.2.

I couldn't find this first number on the first draw, but this is where the

first endos claimed she'd had a significant drop and used this information to

push for RAI, since they believed Amy wouldn't respond to any drug treatment.

Interestingly, I've now talked to a number of doctors/health professionals in

trying to find the right people to treat our daughter, and have yet to run

into a doctor who knows what ANC means. Perhaps Elaine could weigh in on

this question?

I wish I knew more, but let me know if this helps, or ask more questions.

Amy's Pam

In a message dated 2/22/2002 11:58:24 PM Central Standard Time,

Geneva248@... writes:

> Hey Pam,

>

> Could you tell me which white blood cell/cells are involved? And which

> direction they are shifted? I have a sister who has a chronic and

> undiagnosed (as to cause) lowered white count and I have just gotten the

> results of her most recent CBC. She's at the other end of the country (SF

> Bay area) and has been dealing with this for a couple of years with no real

> direction. She has symptoms of a lot of stuff but who of us doesn't?

>

> And, since my endo only did free T3 and T4 until I got exopthalmos and only

> then did the autoimmune test (which I don't know and he never let me see

> the results) could you please tell me which blood tests are usually

> ordered?

>

> Really appreciate it.

> Laurel

I want to be the kind of friend Jesus would call, at the end of the day, just

to talk about nothing.-Wayne

[Guest guest]

Hey Laurel,

Well, I'm so new to this that I'm not sure I can help, but I'll list what I

have from the doctor's first lab draws.

Her first draw was a combination of CBC with differential/platelet a

comprehensive metabolic panel and thyroid panel. At this initial reading her

WBC count was a bit low, coming in at 3.8 with a range of 4.0 - 12.5.

Platelet count was 203. This was before we even suspected thyroid disease,

but were wondering why she'd nearly fainted one day. This draw was done on

1/9/02.

After the initial blood work came back our family doctor suspected a thyroid

disease and conferred with the endos at Children's Hospital about further

testing. Blood work was done and sent to the endo department while we

started PTU and waited to see the doctors on 2/5/02.

A third draw was done on 2/5/02. This time her WBC was down to 3.2 and her

platelet count was down to 144. This third draw was (perhaps?) more

elaborate than the first, was done at a hospital and read by a different lab.

They had another item called " ANC " that was 1.4 with a range of 1.8 - 7.2.

I couldn't find this first number on the first draw, but this is where the

first endos claimed she'd had a significant drop and used this information to

push for RAI, since they believed Amy wouldn't respond to any drug treatment.

Interestingly, I've now talked to a number of doctors/health professionals in

trying to find the right people to treat our daughter, and have yet to run

into a doctor who knows what ANC means. Perhaps Elaine could weigh in on

this question?

I wish I knew more, but let me know if this helps, or ask more questions.

Amy's Pam

In a message dated 2/22/2002 11:58:24 PM Central Standard Time,

Geneva248@... writes:

> Hey Pam,

>

> Could you tell me which white blood cell/cells are involved? And which

> direction they are shifted? I have a sister who has a chronic and

> undiagnosed (as to cause) lowered white count and I have just gotten the

> results of her most recent CBC. She's at the other end of the country (SF

> Bay area) and has been dealing with this for a couple of years with no real

> direction. She has symptoms of a lot of stuff but who of us doesn't?

>

> And, since my endo only did free T3 and T4 until I got exopthalmos and only

> then did the autoimmune test (which I don't know and he never let me see

> the results) could you please tell me which blood tests are usually

> ordered?

>

> Really appreciate it.

> Laurel

I want to be the kind of friend Jesus would call, at the end of the day, just

to talk about nothing.-Wayne

[Guest guest]

Pam,

I believe the ANC that is being referred to is an Absolute Neutrophil Count.

ANC is the actual number of white blood cells that a patient has to fight an

infection.

Here is a website which has a link to calculate your ANC

....http://www.curehodgkins.com/hodgkins_resources/determineANC.html

Marilyn

[Guest guest]

Hi ,

I don't post often but I read everything and find the archives very helpful,

but here is something I can't find. On my blood work it lists my MPV as being

high. Does anyone know what this is? Also on the urinalisys the Specific

Gravit is low. Does anyone know what this is?

Thanks alot,

Jane

[Guest guest]

Hi ,

I don't post often but I read everything and find the archives very helpful,

but here is something I can't find. On my blood work it lists my MPV as being

high. Does anyone know what this is? Also on the urinalisys the Specific

Gravit is low. Does anyone know what this is?

Thanks alot,

Jane

[Guest guest]

Hi ,

I don't post often but I read everything and find the archives very helpful,

but here is something I can't find. On my blood work it lists my MPV as being

high. Does anyone know what this is? Also on the urinalisys the Specific

Gravit is low. Does anyone know what this is?

Thanks alot,

Jane

[Guest guest]

Hi Pam <Amy's>,

>>>They also made us feel that one particularly high reading (a TSI of 318%)

>>>meant that she would never have any hope other than RAI. It really

>>>stressed us out to say no to " the authority " in children's health at the

>>>major hospital for children in KC, but we're thankful we stood up to

>>>them.<<<

The high TSI antibody readins is indicative that Amy's hyperthyroidism is of

an autoimmune nature...but I have seen others readings that went much higher

and remission is still possible. TAP and PTU will dramatically lower this

number. And your doctors are so WRONG about the RAI! RAI will NOT lower

the antibodies, period, in fact it may increase them as the thyroid

struggles to live as it dies from the

I-131. Once the thyroid is dead, these antibodies have no thyroid left to

attack so they can/will attack the eyes causing graves ophthamology,

something Amy really does not want to deal with.

I had RAI in '96, for now I still have *some* function left in my thyroid,

but my eyes became involved last April. My ophthamologist ran my TSI

antibodies (first time it was ever done by anyone!) and they rang in at

199%. At my lab <130% is considered normal, in some labs it is <100%. So

before allowing my doctor to prescribe steroids on my eyes, I approached

both endo and optho with an idea of trying one of the ATD's to lower my

antibodies so they will not register. I have been on PTU since the end of

October...my December TSI came back at 144%, down 55%, my eyes are doing

great, not perfect, but this non-traditional treatment is working for me. I

am waiting for my TSI results that were drawn 10 days ago to come back to

see what my TSI's are now.

Knowing the antibody levels is very important in our disease. Also, not

having RAI does not mean one will not get the eye disease, it is always a

possibility, but I don't think it is as severe in those who don't have

RAI...but I could be wrong. There is another antibody used to check for

Hashimoto's...I *think* it is the TRAb (help, Elaine!, but don't kill me for

asking yet again!). We are seeing more people who are testing positive for

both autoimmune diseases. I think the idea that both diseases are actually

the same disease, with Graves being the hyper side of hashi's makes a lot of

sense, but until researchers actually figures this out, who knows. If this

should ever turn out to be true, I wonder how treatments will change.

This is probably more than you wanted to know right now It is something

to keep in mind. Here is a url on the importance of the antibodies testing,

maybe it will explain more for you than I could.

Jody

http://www.labodia.com/revthy.htm#Thyroid

_________________________________________________________________

MSN Photos is the easiest way to share and print your photos:

http://photos.msn.com/support/worldwide.aspx

[Guest guest]

Hi Pam <Amy's>,

>>>They also made us feel that one particularly high reading (a TSI of 318%)

>>>meant that she would never have any hope other than RAI. It really

>>>stressed us out to say no to " the authority " in children's health at the

>>>major hospital for children in KC, but we're thankful we stood up to

>>>them.<<<

The high TSI antibody readins is indicative that Amy's hyperthyroidism is of

an autoimmune nature...but I have seen others readings that went much higher

and remission is still possible. TAP and PTU will dramatically lower this

number. And your doctors are so WRONG about the RAI! RAI will NOT lower

the antibodies, period, in fact it may increase them as the thyroid

struggles to live as it dies from the

I-131. Once the thyroid is dead, these antibodies have no thyroid left to

attack so they can/will attack the eyes causing graves ophthamology,

something Amy really does not want to deal with.

I had RAI in '96, for now I still have *some* function left in my thyroid,

but my eyes became involved last April. My ophthamologist ran my TSI

antibodies (first time it was ever done by anyone!) and they rang in at

199%. At my lab <130% is considered normal, in some labs it is <100%. So

before allowing my doctor to prescribe steroids on my eyes, I approached

both endo and optho with an idea of trying one of the ATD's to lower my

antibodies so they will not register. I have been on PTU since the end of

October...my December TSI came back at 144%, down 55%, my eyes are doing

great, not perfect, but this non-traditional treatment is working for me. I

am waiting for my TSI results that were drawn 10 days ago to come back to

see what my TSI's are now.

Knowing the antibody levels is very important in our disease. Also, not

having RAI does not mean one will not get the eye disease, it is always a

possibility, but I don't think it is as severe in those who don't have

RAI...but I could be wrong. There is another antibody used to check for

Hashimoto's...I *think* it is the TRAb (help, Elaine!, but don't kill me for

asking yet again!). We are seeing more people who are testing positive for

both autoimmune diseases. I think the idea that both diseases are actually

the same disease, with Graves being the hyper side of hashi's makes a lot of

sense, but until researchers actually figures this out, who knows. If this

should ever turn out to be true, I wonder how treatments will change.

This is probably more than you wanted to know right now It is something

to keep in mind. Here is a url on the importance of the antibodies testing,

maybe it will explain more for you than I could.

Jody

http://www.labodia.com/revthy.htm#Thyroid

_________________________________________________________________

MSN Photos is the easiest way to share and print your photos:

http://photos.msn.com/support/worldwide.aspx

[Guest guest]

Hi Pam <Amy's>,

>>>They also made us feel that one particularly high reading (a TSI of 318%)

>>>meant that she would never have any hope other than RAI. It really

>>>stressed us out to say no to " the authority " in children's health at the

>>>major hospital for children in KC, but we're thankful we stood up to

>>>them.<<<

The high TSI antibody readins is indicative that Amy's hyperthyroidism is of

an autoimmune nature...but I have seen others readings that went much higher

and remission is still possible. TAP and PTU will dramatically lower this

number. And your doctors are so WRONG about the RAI! RAI will NOT lower

the antibodies, period, in fact it may increase them as the thyroid

struggles to live as it dies from the

I-131. Once the thyroid is dead, these antibodies have no thyroid left to

attack so they can/will attack the eyes causing graves ophthamology,

something Amy really does not want to deal with.

I had RAI in '96, for now I still have *some* function left in my thyroid,

but my eyes became involved last April. My ophthamologist ran my TSI

antibodies (first time it was ever done by anyone!) and they rang in at

199%. At my lab <130% is considered normal, in some labs it is <100%. So

before allowing my doctor to prescribe steroids on my eyes, I approached

both endo and optho with an idea of trying one of the ATD's to lower my

antibodies so they will not register. I have been on PTU since the end of

October...my December TSI came back at 144%, down 55%, my eyes are doing

great, not perfect, but this non-traditional treatment is working for me. I

am waiting for my TSI results that were drawn 10 days ago to come back to

see what my TSI's are now.

Knowing the antibody levels is very important in our disease. Also, not

having RAI does not mean one will not get the eye disease, it is always a

possibility, but I don't think it is as severe in those who don't have

RAI...but I could be wrong. There is another antibody used to check for

Hashimoto's...I *think* it is the TRAb (help, Elaine!, but don't kill me for

asking yet again!). We are seeing more people who are testing positive for

both autoimmune diseases. I think the idea that both diseases are actually

the same disease, with Graves being the hyper side of hashi's makes a lot of

sense, but until researchers actually figures this out, who knows. If this

should ever turn out to be true, I wonder how treatments will change.

This is probably more than you wanted to know right now It is something

to keep in mind. Here is a url on the importance of the antibodies testing,

maybe it will explain more for you than I could.

Jody

http://www.labodia.com/revthy.htm#Thyroid

_________________________________________________________________

MSN Photos is the easiest way to share and print your photos:

http://photos.msn.com/support/worldwide.aspx

[Guest guest]

Hey Amy's Pam,

Thanks so much. I will try to find out what ANC (besides the political party of

South Africa). My books are so old that, looking at them last night, it was

difficult to know what is still current. I may be forced to go to the

bookstore. (and that's dangerous)

In the meantime I'll email a couple of doc friends to see if they can figure

this out. One of them has CFS so she might be up on the meanings of these

things.

I'll let you know what I find. Hope it helps even a little.

Laurel

Re: PTU vs. Tap

Hey Laurel,

Well, I'm so new to this that I'm not sure I can help, but I'll list what I

have from the doctor's first lab draws.

Her first draw was a combination of CBC with differential/platelet a

comprehensive metabolic panel and thyroid panel. At this initial reading her

WBC count was a bit low, coming in at 3.8 with a range of 4.0 - 12.5.

Platelet count was 203. This was before we even suspected thyroid disease,

but were wondering why she'd nearly fainted one day. This draw was done on

1/9/02.

After the initial blood work came back our family doctor suspected a thyroid

disease and conferred with the endos at Children's Hospital about further

testing. Blood work was done and sent to the endo department while we

started PTU and waited to see the doctors on 2/5/02.

A third draw was done on 2/5/02. This time her WBC was down to 3.2 and her

platelet count was down to 144. This third draw was (perhaps?) more

elaborate than the first, was done at a hospital and read by a different lab.

They had another item called " ANC " that was 1.4 with a range of 1.8 - 7.2.

I couldn't find this first number on the first draw, but this is where the

first endos claimed she'd had a significant drop and used this information to

push for RAI, since they believed Amy wouldn't respond to any drug treatment.

Interestingly, I've now talked to a number of doctors/health professionals in

trying to find the right people to treat our daughter, and have yet to run

into a doctor who knows what ANC means. Perhaps Elaine could weigh in on

this question?

I wish I knew more, but let me know if this helps, or ask more questions.

Amy's Pam

In a message dated 2/22/2002 11:58:24 PM Central Standard Time,

Geneva248@... writes:

> Hey Pam,

>

> Could you tell me which white blood cell/cells are involved? And which

> direction they are shifted? I have a sister who has a chronic and

> undiagnosed (as to cause) lowered white count and I have just gotten the

> results of her most recent CBC. She's at the other end of the country (SF

> Bay area) and has been dealing with this for a couple of years with no real

> direction. She has symptoms of a lot of stuff but who of us doesn't?

>

> And, since my endo only did free T3 and T4 until I got exopthalmos and only

> then did the autoimmune test (which I don't know and he never let me see

> the results) could you please tell me which blood tests are usually

> ordered?

>

> Really appreciate it.

> Laurel

I want to be the kind of friend Jesus would call, at the end of the day, just

to talk about nothing.-Wayne

[Guest guest]

Specific gravity can tell the docs if you're drinking enough water. It

doesn't measure anything else.

So, if you're NOT drinking enough water, your gravity will be low -- at

least that's the way it works if memory serves. I think a higher specific

gravity is found when the urine has more force that comes from having water

in the bladder/body.

B

Re: PTU vs. Tap

> Hi ,

>

> I don't post often but I read everything and find the archives very

helpful,

> but here is something I can't find. On my blood work it lists my MPV as

being

> high. Does anyone know what this is? Also on the urinalisys the Specific

> Gravit is low. Does anyone know what this is?

>

> Thanks alot,

>

> Jane

>

>

>

[Guest guest]

Jody!

You are amazing! I grabbed the entire document from the attached hyperlink.

Its going to take a while to wade into but it looks like it may explain lots.

Gratefully,

Laurel

Re: PTU vs. Tap

Hi Pam <Amy's>,

>>>They also made us feel that one particularly high reading (a TSI of 318%)

>>>meant that she would never have any hope other than RAI. It really

>>>stressed us out to say no to " the authority " in children's health at the

>>>major hospital for children in KC, but we're thankful we stood up to

>>>them.<<<

The high TSI antibody readins is indicative that Amy's hyperthyroidism is of

an autoimmune nature...but I have seen others readings that went much higher

and remission is still possible. TAP and PTU will dramatically lower this

number. And your doctors are so WRONG about the RAI! RAI will NOT lower

the antibodies, period, in fact it may increase them as the thyroid

struggles to live as it dies from the

I-131. Once the thyroid is dead, these antibodies have no thyroid left to

attack so they can/will attack the eyes causing graves ophthamology,

something Amy really does not want to deal with.

I had RAI in '96, for now I still have *some* function left in my thyroid,

but my eyes became involved last April. My ophthamologist ran my TSI

antibodies (first time it was ever done by anyone!) and they rang in at

199%. At my lab <130% is considered normal, in some labs it is <100%. So

before allowing my doctor to prescribe steroids on my eyes, I approached

both endo and optho with an idea of trying one of the ATD's to lower my

antibodies so they will not register. I have been on PTU since the end of

October...my December TSI came back at 144%, down 55%, my eyes are doing

great, not perfect, but this non-traditional treatment is working for me. I

am waiting for my TSI results that were drawn 10 days ago to come back to

see what my TSI's are now.

Knowing the antibody levels is very important in our disease. Also, not

having RAI does not mean one will not get the eye disease, it is always a

possibility, but I don't think it is as severe in those who don't have

RAI...but I could be wrong. There is another antibody used to check for

Hashimoto's...I *think* it is the TRAb (help, Elaine!, but don't kill me for

asking yet again!). We are seeing more people who are testing positive for

both autoimmune diseases. I think the idea that both diseases are actually

the same disease, with Graves being the hyper side of hashi's makes a lot of

sense, but until researchers actually figures this out, who knows. If this

should ever turn out to be true, I wonder how treatments will change.

This is probably more than you wanted to know right now It is something

to keep in mind. Here is a url on the importance of the antibodies testing,

maybe it will explain more for you than I could.

Jody

http://www.labodia.com/revthy.htm#Thyroid

_________________________________________________________________

MSN Photos is the easiest way to share and print your photos:

http://photos.msn.com/support/worldwide.aspx

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

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]

Jody!

You are amazing! I grabbed the entire document from the attached hyperlink.

Its going to take a while to wade into but it looks like it may explain lots.

Gratefully,

Laurel

Re: PTU vs. Tap

Hi Pam <Amy's>,

>>>They also made us feel that one particularly high reading (a TSI of 318%)

>>>meant that she would never have any hope other than RAI. It really

>>>stressed us out to say no to " the authority " in children's health at the

>>>major hospital for children in KC, but we're thankful we stood up to

>>>them.<<<

The high TSI antibody readins is indicative that Amy's hyperthyroidism is of

an autoimmune nature...but I have seen others readings that went much higher

and remission is still possible. TAP and PTU will dramatically lower this

number. And your doctors are so WRONG about the RAI! RAI will NOT lower

the antibodies, period, in fact it may increase them as the thyroid

struggles to live as it dies from the

I-131. Once the thyroid is dead, these antibodies have no thyroid left to

attack so they can/will attack the eyes causing graves ophthamology,

something Amy really does not want to deal with.

I had RAI in '96, for now I still have *some* function left in my thyroid,

but my eyes became involved last April. My ophthamologist ran my TSI

antibodies (first time it was ever done by anyone!) and they rang in at

199%. At my lab <130% is considered normal, in some labs it is <100%. So

before allowing my doctor to prescribe steroids on my eyes, I approached

both endo and optho with an idea of trying one of the ATD's to lower my

antibodies so they will not register. I have been on PTU since the end of

October...my December TSI came back at 144%, down 55%, my eyes are doing

great, not perfect, but this non-traditional treatment is working for me. I

am waiting for my TSI results that were drawn 10 days ago to come back to

see what my TSI's are now.

Knowing the antibody levels is very important in our disease. Also, not

having RAI does not mean one will not get the eye disease, it is always a

possibility, but I don't think it is as severe in those who don't have

RAI...but I could be wrong. There is another antibody used to check for

Hashimoto's...I *think* it is the TRAb (help, Elaine!, but don't kill me for

asking yet again!). We are seeing more people who are testing positive for

both autoimmune diseases. I think the idea that both diseases are actually

the same disease, with Graves being the hyper side of hashi's makes a lot of

sense, but until researchers actually figures this out, who knows. If this

should ever turn out to be true, I wonder how treatments will change.

This is probably more than you wanted to know right now It is something

to keep in mind. Here is a url on the importance of the antibodies testing,

maybe it will explain more for you than I could.

Jody

http://www.labodia.com/revthy.htm#Thyroid

_________________________________________________________________

MSN Photos is the easiest way to share and print your photos:

http://photos.msn.com/support/worldwide.aspx

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

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]

Hey Amy's Pam,

go to http://www.labtestonline.org

there you will find the motherlode of explanations for various tests. ANA is

antineuclear antibody (i know my spelling is atrocious) and is done to rule out

stuff. Their explanation is better than mine.

Laurel

Re: PTU vs. Tap

Hey Laurel,

Well, I'm so new to this that I'm not sure I can help, but I'll list what I

have from the doctor's first lab draws.

Her first draw was a combination of CBC with differential/platelet a

comprehensive metabolic panel and thyroid panel. At this initial reading her

WBC count was a bit low, coming in at 3.8 with a range of 4.0 - 12.5.

Platelet count was 203. This was before we even suspected thyroid disease,

but were wondering why she'd nearly fainted one day. This draw was done on

1/9/02.

After the initial blood work came back our family doctor suspected a thyroid

disease and conferred with the endos at Children's Hospital about further

testing. Blood work was done and sent to the endo department while we

started PTU and waited to see the doctors on 2/5/02.

A third draw was done on 2/5/02. This time her WBC was down to 3.2 and her

platelet count was down to 144. This third draw was (perhaps?) more

elaborate than the first, was done at a hospital and read by a different lab.

They had another item called " ANC " that was 1.4 with a range of 1.8 - 7.2.

I couldn't find this first number on the first draw, but this is where the

first endos claimed she'd had a significant drop and used this information to

push for RAI, since they believed Amy wouldn't respond to any drug treatment.

Interestingly, I've now talked to a number of doctors/health professionals in

trying to find the right people to treat our daughter, and have yet to run

into a doctor who knows what ANC means. Perhaps Elaine could weigh in on

this question?

I wish I knew more, but let me know if this helps, or ask more questions.

Amy's Pam

In a message dated 2/22/2002 11:58:24 PM Central Standard Time,

Geneva248@... writes:

> Hey Pam,

>

> Could you tell me which white blood cell/cells are involved? And which

> direction they are shifted? I have a sister who has a chronic and

> undiagnosed (as to cause) lowered white count and I have just gotten the

> results of her most recent CBC. She's at the other end of the country (SF

> Bay area) and has been dealing with this for a couple of years with no real

> direction. She has symptoms of a lot of stuff but who of us doesn't?

>

> And, since my endo only did free T3 and T4 until I got exopthalmos and only

> then did the autoimmune test (which I don't know and he never let me see

> the results) could you please tell me which blood tests are usually

> ordered?

>

> Really appreciate it.

> Laurel

I want to be the kind of friend Jesus would call, at the end of the day, just

to talk about nothing.-Wayne