Re: Had my labs done....

March 20, 2002

Hi Sue,

Don't ever apologize for asking questions...I think, in the beginning I was

asking the same questions over and over again because I just couldn't get my

mind to work and remember <sigh>

The TSI are Thryoid Stimulating Immunoglobulins and these are autoantibodies

and are what attack our thyroids and our eyes. It is a test I would

recommend to EVERYONE diagnosed with graves from the beginning. It does not

need to be taken at every blood draw, but from time to time to see if these

are wanning with treatment and and indicator of remission.

Some doctors just don't see the need for these to be drawn, but from my own

experience of not having them drawn in the beginning nor for over 5 years

until my eye doctor did them to make sure my eye disease was caused by

graves and they were elevated. Had they been done in the beginning and

periodically since then, maybe I would/could have done things differently in

treatment and avoided any eye involvement. My doctor didn't think they were

important before, she does now.

Hope this helps,

Jody

_________________________________________________________________

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March 20, 2002

Hi Sue,

Don't ever apologize for asking questions...I think, in the beginning I was

asking the same questions over and over again because I just couldn't get my

mind to work and remember <sigh>

The TSI are Thryoid Stimulating Immunoglobulins and these are autoantibodies

and are what attack our thyroids and our eyes. It is a test I would

recommend to EVERYONE diagnosed with graves from the beginning. It does not

need to be taken at every blood draw, but from time to time to see if these

are wanning with treatment and and indicator of remission.

Some doctors just don't see the need for these to be drawn, but from my own

experience of not having them drawn in the beginning nor for over 5 years

until my eye doctor did them to make sure my eye disease was caused by

graves and they were elevated. Had they been done in the beginning and

periodically since then, maybe I would/could have done things differently in

treatment and avoided any eye involvement. My doctor didn't think they were

important before, she does now.

Hope this helps,

Jody

_________________________________________________________________

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

March 20, 2002

Wow so much to learn. I will ask my local doc about the test and see if I

have been tested. He is the one who got eye problems after RAI. When we

went skiing with him a couple of years back, he had to tape his eyes closed

at night.

So I don't think he will have a problem with me worrying about this.

Sue

At 11:09 AM 20/03/2002 -0500, you wrote:

> Hi Sue,

> Don't ever apologize for asking questions...I think, in the be

>ginng I was

> asking the same questions over and over again because I just

>couldn't get my

><>

>

> The TSI are Thryoid Stimulating Immunoglobulins

>and these are autoantibodies

> It is a test I would

> It does not

>

>need to be taken at every blood draw, but from time to time to see if these

>

> are wanning with treatment and and indicator of remission.

>

> Some

>doctors just don't see the need for these to be drawn, but from my own

>

>experience of not having them drawn in the beginning nor for over 5 years

>

> until my eye doctor did them to make sure my eye disease was caused by

> Had they been done in the beginning and

> periodically since then, maybe I would/could have done things differently

in

> treatment and avoided any eye involvement. My doctor didn't think they were

> important before, she does now.

>

> Hope this helps,

> Jody

March 20, 2002

Wow so much to learn. I will ask my local doc about the test and see if I

have been tested. He is the one who got eye problems after RAI. When we

went skiing with him a couple of years back, he had to tape his eyes closed

at night.

So I don't think he will have a problem with me worrying about this.

Sue

At 11:09 AM 20/03/2002 -0500, you wrote:

> Hi Sue,

> Don't ever apologize for asking questions...I think, in the be

>ginng I was

> asking the same questions over and over again because I just

>couldn't get my

><>

>

> The TSI are Thryoid Stimulating Immunoglobulins

>and these are autoantibodies

> It is a test I would

> It does not

>

>need to be taken at every blood draw, but from time to time to see if these

>

> are wanning with treatment and and indicator of remission.

>

> Some

>doctors just don't see the need for these to be drawn, but from my own

>

>experience of not having them drawn in the beginning nor for over 5 years

>

> until my eye doctor did them to make sure my eye disease was caused by

> Had they been done in the beginning and

> periodically since then, maybe I would/could have done things differently

in

> treatment and avoided any eye involvement. My doctor didn't think they were

> important before, she does now.

>

> Hope this helps,

> Jody

March 20, 2002

Wow so much to learn. I will ask my local doc about the test and see if I

have been tested. He is the one who got eye problems after RAI. When we

went skiing with him a couple of years back, he had to tape his eyes closed

at night.

So I don't think he will have a problem with me worrying about this.

Sue

At 11:09 AM 20/03/2002 -0500, you wrote:

> Hi Sue,

> Don't ever apologize for asking questions...I think, in the be

>ginng I was

> asking the same questions over and over again because I just

>couldn't get my

><>

>

> The TSI are Thryoid Stimulating Immunoglobulins

>and these are autoantibodies

> It is a test I would

> It does not

>

>need to be taken at every blood draw, but from time to time to see if these

>

> are wanning with treatment and and indicator of remission.

>

> Some

>doctors just don't see the need for these to be drawn, but from my own

>

>experience of not having them drawn in the beginning nor for over 5 years

>

> until my eye doctor did them to make sure my eye disease was caused by

> Had they been done in the beginning and

> periodically since then, maybe I would/could have done things differently

in

> treatment and avoided any eye involvement. My doctor didn't think they were

> important before, she does now.

>

> Hope this helps,

> Jody

March 20, 2002

Hi Terry-

Nope, you're not missing anything. I had exophthalmus before I had RAI.

After RAI, it became severe and they had to closely watch me. I saw an

ophthalmologist every week for 2 months and then once/month 4 months after

that. After 6 months it seemed to stabilize. The only reason that I didn't

end up having pressure surgery was because I have huge orbits so my eyes

could pop out as much as they needed. My abs were probably high at that

time.

Now, 15 years later, the abs are low. But the exophthalmus is still there

although now it's considered mild. My eyes have receded to 27mm. The

inflammation reaction from the abs leaves permanent scar tissue in the

muscles in your eyes so the eyes still protrude.

I recently switched from Armour to Cytomel and Synthroid and had that sharp

and aching feeling in my sockets like I did when my TED was active. It

seems to have stopped.

My ab levels were measured last summer before the switch. It'd have been

interesting to see if there were any changes in ab levels while my eyes were

hurting.

Take care,

> ,

>

> I'm not good at looking back through the posts, but I thought you recently

> mentioned eye involvement? If it's caused by the ab's and yours are low,

am

> I missing something?

>

> Thanks,

>

> Terry

March 20, 2002

Hi Terry-

Nope, you're not missing anything. I had exophthalmus before I had RAI.

After RAI, it became severe and they had to closely watch me. I saw an

ophthalmologist every week for 2 months and then once/month 4 months after

that. After 6 months it seemed to stabilize. The only reason that I didn't

end up having pressure surgery was because I have huge orbits so my eyes

could pop out as much as they needed. My abs were probably high at that

time.

Now, 15 years later, the abs are low. But the exophthalmus is still there

although now it's considered mild. My eyes have receded to 27mm. The

inflammation reaction from the abs leaves permanent scar tissue in the

muscles in your eyes so the eyes still protrude.

I recently switched from Armour to Cytomel and Synthroid and had that sharp

and aching feeling in my sockets like I did when my TED was active. It

seems to have stopped.

My ab levels were measured last summer before the switch. It'd have been

interesting to see if there were any changes in ab levels while my eyes were

hurting.

Take care,

> ,

>

> I'm not good at looking back through the posts, but I thought you recently

> mentioned eye involvement? If it's caused by the ab's and yours are low,

am

> I missing something?

>

> Thanks,

>

> Terry

March 20, 2002

Hi Terry-

Nope, you're not missing anything. I had exophthalmus before I had RAI.

After RAI, it became severe and they had to closely watch me. I saw an

ophthalmologist every week for 2 months and then once/month 4 months after

that. After 6 months it seemed to stabilize. The only reason that I didn't

end up having pressure surgery was because I have huge orbits so my eyes

could pop out as much as they needed. My abs were probably high at that

time.

Now, 15 years later, the abs are low. But the exophthalmus is still there

although now it's considered mild. My eyes have receded to 27mm. The

inflammation reaction from the abs leaves permanent scar tissue in the

muscles in your eyes so the eyes still protrude.

I recently switched from Armour to Cytomel and Synthroid and had that sharp

and aching feeling in my sockets like I did when my TED was active. It

seems to have stopped.

My ab levels were measured last summer before the switch. It'd have been

interesting to see if there were any changes in ab levels while my eyes were

hurting.

Take care,

> ,

>

> I'm not good at looking back through the posts, but I thought you recently

> mentioned eye involvement? If it's caused by the ab's and yours are low,

am

> I missing something?

>

> Thanks,

>

> Terry

March 20, 2002

Hi ,

Thanks for the explanation. There are so many " mysteries " to this disease!

Terry

>

> Reply-To: graves_support

> Date: Wed, 20 Mar 2002 14:12:34 -0800

> To: <graves_support >

> Subject: Re: Had my labs done....

>

> Hi Terry-

>

> Nope, you're not missing anything. I had exophthalmus before I had RAI.

> After RAI, it became severe and they had to closely watch me. I saw an

> ophthalmologist every week for 2 months and then once/month 4 months after

> that. After 6 months it seemed to stabilize. The only reason that I didn't

> end up having pressure surgery was because I have huge orbits so my eyes

> could pop out as much as they needed. My abs were probably high at that

> time.

>

> Now, 15 years later, the abs are low. But the exophthalmus is still there

> although now it's considered mild. My eyes have receded to 27mm. The

> inflammation reaction from the abs leaves permanent scar tissue in the

> muscles in your eyes so the eyes still protrude.

>

> I recently switched from Armour to Cytomel and Synthroid and had that sharp

> and aching feeling in my sockets like I did when my TED was active. It

> seems to have stopped.

>

> My ab levels were measured last summer before the switch. It'd have been

> interesting to see if there were any changes in ab levels while my eyes were

> hurting.

>

> Take care,

>

>> ,

>>

>> I'm not good at looking back through the posts, but I thought you recently

>> mentioned eye involvement? If it's caused by the ab's and yours are low,

> am

>> I missing something?

>>

>> Thanks,

>>

>> Terry

>

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

> 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.

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

> --------

>

March 20, 2002

Hi ,

Thanks for the explanation. There are so many " mysteries " to this disease!

Terry

>

> Reply-To: graves_support

> Date: Wed, 20 Mar 2002 14:12:34 -0800

> To: <graves_support >

> Subject: Re: Had my labs done....

>

> Hi Terry-

>

> Nope, you're not missing anything. I had exophthalmus before I had RAI.

> After RAI, it became severe and they had to closely watch me. I saw an

> ophthalmologist every week for 2 months and then once/month 4 months after

> that. After 6 months it seemed to stabilize. The only reason that I didn't

> end up having pressure surgery was because I have huge orbits so my eyes

> could pop out as much as they needed. My abs were probably high at that

> time.

>

> Now, 15 years later, the abs are low. But the exophthalmus is still there

> although now it's considered mild. My eyes have receded to 27mm. The

> inflammation reaction from the abs leaves permanent scar tissue in the

> muscles in your eyes so the eyes still protrude.

>

> I recently switched from Armour to Cytomel and Synthroid and had that sharp

> and aching feeling in my sockets like I did when my TED was active. It

> seems to have stopped.

>

> My ab levels were measured last summer before the switch. It'd have been

> interesting to see if there were any changes in ab levels while my eyes were

> hurting.

>

> Take care,

>

>> ,

>>

>> I'm not good at looking back through the posts, but I thought you recently

>> mentioned eye involvement? If it's caused by the ab's and yours are low,

> am

>> I missing something?

>>

>> Thanks,

>>

>> Terry

>

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

> 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.

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

> --------

>

March 20, 2002

Hi ,

Thanks for the explanation. There are so many " mysteries " to this disease!

Terry

>

> Reply-To: graves_support

> Date: Wed, 20 Mar 2002 14:12:34 -0800

> To: <graves_support >

> Subject: Re: Had my labs done....

>

> Hi Terry-

>

> Nope, you're not missing anything. I had exophthalmus before I had RAI.

> After RAI, it became severe and they had to closely watch me. I saw an

> ophthalmologist every week for 2 months and then once/month 4 months after

> that. After 6 months it seemed to stabilize. The only reason that I didn't

> end up having pressure surgery was because I have huge orbits so my eyes

> could pop out as much as they needed. My abs were probably high at that

> time.

>

> Now, 15 years later, the abs are low. But the exophthalmus is still there

> although now it's considered mild. My eyes have receded to 27mm. The

> inflammation reaction from the abs leaves permanent scar tissue in the

> muscles in your eyes so the eyes still protrude.

>

> I recently switched from Armour to Cytomel and Synthroid and had that sharp

> and aching feeling in my sockets like I did when my TED was active. It

> seems to have stopped.

>

> My ab levels were measured last summer before the switch. It'd have been

> interesting to see if there were any changes in ab levels while my eyes were

> hurting.

>

> Take care,

>

>> ,

>>

>> I'm not good at looking back through the posts, but I thought you recently

>> mentioned eye involvement? If it's caused by the ab's and yours are low,

> am

>> I missing something?

>>

>> Thanks,

>>

>> Terry

>

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

> 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.

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

> --------

>

March 21, 2002

Hi Sue,

Regarding the notes on how you feel on the days you have labs done and

clipping them to the labs when you get your copies back, you will be able to

watch how the numbers go and chart them, and when you see you were feeling

good on a certain day, and you check your lab values that day, it will give

you a target to shoot for if your values go back up or go down to hypo.

This is something many of us recommend doing from the beginning.

It also lets you see that *something* is happening while your on the meds

and know that you really are doing something about it, even on days when you

feel like nothing is going right about it. It is not something you *have*

to do, but it sure comes in handy.

Jody

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March 21, 2002