Re: LID before Initial Low Dose RAI Scan

September 4, 2002

Subject: LID before Initial Low Dose RAI Scan

> Do I have to follow a LID before a low dose RAI scan?

>

> 7/23/02- FNA dx pap carc

> 8/27/02 -TT & 3 lymph nodes

>

Yes.

High dose, low dose, the idea is the same -- you want to get the best uptake

you can.

I'm curious, though (or perhaps I've forgotten --) are you not having an

ablation dose?

bj

September 4, 2002

Hi Bj,

Actually I was told by my endo that I had to have a low dose RAI scan

done and then if they find anything on it that they will send me for

a 100mci dose then after that if they find anything again a higher

dosage determined at a later date.

So in regards to your answer I better start this LID now because I

will probably be having this RAI soon. Do you know that the Endo

never mentioned the LID at all. I had to mention it to him. I have

a feeling that in this area (Mid-Atlantic) they are not as up to date

on Thyca protocol as other areas of the country.

Actually I feel as though I know more about this diagnosis then my

doctors do. Unfortunately I don't have the time nor the money to go

searching for a " knowledgeable doctor " at this point. I will have to

educate them. Don't get me wrong I am sure they know plenty...it's

just seems as though it contradicts what I am hearing here on these

boards.

> From: " polishwytch " <polishwytch@y...>

> Subject: LID before Initial Low Dose RAI Scan

>

> > Do I have to follow a LID before a low dose RAI scan?

> >

> > 7/23/02- FNA dx pap carc

> > 8/27/02 -TT & 3 lymph nodes

> >

>

> Yes.

> High dose, low dose, the idea is the same -- you want to get the

best uptake

> you can.

> I'm curious, though (or perhaps I've forgotten --) are you not

having an

> ablation dose?

> bj

September 5, 2002

Re: LID before Initial Low Dose RAI Scan

> Actually I was told by my endo that I had to have a low dose RAI scan done

and then if they find anything on it that they will send me for a 100mci

dose then after that if they find anything again a higher dosage determined

at a later date.

>

It would be very unusual to not " find anything " if you have had a tt but no

ablation. Did they explain to you that it takes several *months* for the

ablative dose to do its work? The followup scan would come 6-12 months after

treatment. Scan too soon and you may just see stuff the Big Dose was still

taking care of!

> So in regards to your answer I better start this LID now because I will

probably be having this RAI soon. Do you know that the Endo never mentioned

the LID at all. I had to mention it to him. I have a feeling that in this

area (Mid-Atlantic) they are not as up to date on Thyca protocol as other

areas of the country.

>

I think it has more to do with the doctor's experience and/or philosophy on

the subject than geography. My first endo didn't believe in LID (and didn't

do Tg testing either). My current endo prescribes it. And they're both in

the same area (DC).

And you don't have to start the LID until 2 weeks before the dose (I forget

when you said you were having it).

> Actually I feel as though I know more about this diagnosis then my doctors

do. Unfortunately I don't have the time nor the money to go searching for a

" knowledgeable doctor " at this point. I will have to educate them. Don't

get me wrong I am sure they know plenty...it's just seems as though it

contradicts what I am hearing here on these boards.

>

They may know plenty, just not a lot about treating thyca. Have you asked

them how many thyca patients they treat/follow (and types and outcomes)? If

you can get to a " live " support group meeting you may be able to get a lead

on a more thyca-knowledgeable doctor (that's how I found mine).

Best wishes

bj

September 5, 2002

Re: LID before Initial Low Dose RAI Scan

> Actually I was told by my endo that I had to have a low dose RAI scan done

and then if they find anything on it that they will send me for a 100mci

dose then after that if they find anything again a higher dosage determined

at a later date.

>

It would be very unusual to not " find anything " if you have had a tt but no

ablation. Did they explain to you that it takes several *months* for the

ablative dose to do its work? The followup scan would come 6-12 months after

treatment. Scan too soon and you may just see stuff the Big Dose was still

taking care of!

> So in regards to your answer I better start this LID now because I will

probably be having this RAI soon. Do you know that the Endo never mentioned

the LID at all. I had to mention it to him. I have a feeling that in this

area (Mid-Atlantic) they are not as up to date on Thyca protocol as other

areas of the country.

>

I think it has more to do with the doctor's experience and/or philosophy on

the subject than geography. My first endo didn't believe in LID (and didn't

do Tg testing either). My current endo prescribes it. And they're both in

the same area (DC).

And you don't have to start the LID until 2 weeks before the dose (I forget

when you said you were having it).

> Actually I feel as though I know more about this diagnosis then my doctors

do. Unfortunately I don't have the time nor the money to go searching for a

" knowledgeable doctor " at this point. I will have to educate them. Don't

get me wrong I am sure they know plenty...it's just seems as though it

contradicts what I am hearing here on these boards.

>

They may know plenty, just not a lot about treating thyca. Have you asked

them how many thyca patients they treat/follow (and types and outcomes)? If

you can get to a " live " support group meeting you may be able to get a lead

on a more thyca-knowledgeable doctor (that's how I found mine).

Best wishes

bj

September 5, 2002

Hi BJ,

No they didn't explain ANYTHING to me at all. Nothing about RAI

other than what I have typed below, nothing about LID, Absolutely

nothing about Abalation, nothing about medications, nothing about

calcium. All he did was give me a slip to go have my TSH levels &

Thyroglobin testing done. That is it. Nothing else until after those

test are complete.

Should I be getting worried here? Is someone dropping the ball? I

called yesterday morning and left a message about the calcium thing

and still no response.

Also should I be concerned about the fact that I have gone on my

period which is soooo early as I just went on it the week before my

TT on 8/27 and now again. Is this common to have menstrual changes

like this?

7/23/02 -FNA dx Pap. Carc.

8/27/02 -TT & 3 lymph nodes

> Re: LID before Initial Low Dose RAI Scan

>

> > Actually I was told by my endo that I had to have a low dose RAI

scan done

> and then if they find anything on it that they will send me for a

100mci

> dose then after that if they find anything again a higher dosage

determined

> at a later date.

> >

>

> It would be very unusual to not " find anything " if you have had a

tt but no

> ablation. Did they explain to you that it takes several *months*

for the

> ablative dose to do its work? The followup scan would come 6-12

months after

> treatment. Scan too soon and you may just see stuff the Big Dose

was still

> taking care of!

>

> > So in regards to your answer I better start this LID now because

I will

> probably be having this RAI soon. Do you know that the Endo never

mentioned

> the LID at all. I had to mention it to him. I have a feeling that

in this

> area (Mid-Atlantic) they are not as up to date on Thyca protocol as

other

> areas of the country.

> >

>

> I think it has more to do with the doctor's experience and/or

philosophy on

> the subject than geography. My first endo didn't believe in LID

(and didn't

> do Tg testing either). My current endo prescribes it. And they're

both in

> the same area (DC).

>

> And you don't have to start the LID until 2 weeks before the dose

(I forget

> when you said you were having it).

>

> > Actually I feel as though I know more about this diagnosis then

my doctors

> do. Unfortunately I don't have the time nor the money to go

searching for a

> " knowledgeable doctor " at this point. I will have to educate

them. Don't

> get me wrong I am sure they know plenty...it's just seems as though

it

> contradicts what I am hearing here on these boards.

> >

>

> They may know plenty, just not a lot about treating thyca. Have you

asked

> them how many thyca patients they treat/follow (and types and

outcomes)? If

> you can get to a " live " support group meeting you may be able to

get a lead

> on a more thyca-knowledgeable doctor (that's how I found mine).

> Best wishes

> bj

September 5, 2002

Hi ,

My edno has never said that i should be on a lid diet either. I go tomorrow and

am going to ask about it...it is time for another scan.

Shryll

papilary cancer - tt - 12-17-1997

polishwytch

wrote:Hi Bj,

Actually I was told by my endo that I had to have a low dose RAI scan

done and then if they find anything on it that they will send me for

a 100mci dose then after that if they find anything again a higher

dosage determined at a later date.

So in regards to your answer I better start this LID now because I

will probably be having this RAI soon. Do you know that the Endo

never mentioned the LID at all. I had to mention it to him. I have

a feeling that in this area (Mid-Atlantic) they are not as up to date

on Thyca protocol as other areas of the country.

Actually I feel as though I know more about this diagnosis then my

doctors do. Unfortunately I don't have the time nor the money to go

searching for a " knowledgeable doctor " at this point. I will have to

educate them. Don't get me wrong I am sure they know plenty...it's

just seems as though it contradicts what I am hearing here on these

boards.

> From: " polishwytch " <polishwytch@y...>

> Subject: LID before Initial Low Dose RAI Scan

>

> > Do I have to follow a LID before a low dose RAI scan?

> >

> > 7/23/02- FNA dx pap carc

> > 8/27/02 -TT & 3 lymph nodes

> >

>

> Yes.

> High dose, low dose, the idea is the same -- you want to get the

best uptake

> you can.

> I'm curious, though (or perhaps I've forgotten --) are you not

having an

> ablation dose?

> bj

September 5, 2002

Hi :

For what it's worth here's my two cents worth on the " educating Dr's "

subject. in my experience what you are expressing here about feeling

like you know more than the Dr - has a lot of truth to it. Many of my

medical team have even said " you sure know more about this than we

do " or " can you tell us what you know about.... " As a result i have

come to believe that due to the " rarity " of this desease it may very

well be true that the patient would know more about recommended

treatments etc. especially in areas where no " specialists in thyca "

exist. I personally, feel the burden sometimes, having to be the one

who is always on top of everything, but i have learned if i do not

ask the right questions or bring up various subjects like the LID,

the attempts at treatment would not be the best.

i know how frustrating this becomes ,you have my heartfelt

sympathies but keep " hanging in there "

Sharon

TT june 2001 papillary stage 3

RAI july 177 mcs

due for follow up scan

TSH currently at <.01

> > From: " polishwytch " <polishwytch@y...>

> > Subject: LID before Initial Low Dose RAI Scan

> >

> > > Do I have to follow a LID before a low dose RAI scan?

> > >

> > > 7/23/02- FNA dx pap carc

> > > 8/27/02 -TT & 3 lymph nodes

> > >

> >

> > Yes.

> > High dose, low dose, the idea is the same -- you want to get the

> best uptake

> > you can.

> > I'm curious, though (or perhaps I've forgotten --) are you not

> having an

> > ablation dose?

> > bj

September 5, 2002