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Jim - Re: Pending Ablation

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> Had blood work done the day of the ablation, before I injested the 100mc

> of I-131.

so you should also have the results from that test, which would let you

know just what your TSH was?

> Yes, I had my scan on July 4, 2002 in Canada. Not a holiday here!

good enough reason :-)

> My surgeon (Halifax, Nova Scotia, Canada) is prescribing my meds (first

> dosage of synthroid - .05 mg., once daily) and monitoring my bloodwork

> while the radiation oncologist (Charlottetown, PEI, Canada) is performing

> the ablations and the RAI scans. Each of these doctors is in a different

> city. The surgeon is the primary care giver.

I know you guys up north do things differently, but this doesn't sound like

an ideal situation.

Most of us (although, for a variety of reasons, not all) are monitored by

endocrinologists. While it's always a good idea to be educated on our own

illnesses, it's that much more important with thyca, especially when the

doctor is not a specialist.

> No other MRIs, X-rays or CT scans.

> No theories yet, I am speaking with my surgeon in the next few days. I

> expect that my next dosage of RAI will also be 100mc, but I will find out

> in the next couple of days.

More important than the dose, I would want to know what the doctor thinks

about the high RAI uptake, with apparently no results. Before doing

another dose, it may be appropriate to consider why the first ablation

seems to have failed, and if some additional protocol (such as lithium) may

be indicated.

-

NYC

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Posted
Posted

> Had blood work done the day of the ablation, before I injested the 100mc

> of I-131.

so you should also have the results from that test, which would let you

know just what your TSH was?

> Yes, I had my scan on July 4, 2002 in Canada. Not a holiday here!

good enough reason :-)

> My surgeon (Halifax, Nova Scotia, Canada) is prescribing my meds (first

> dosage of synthroid - .05 mg., once daily) and monitoring my bloodwork

> while the radiation oncologist (Charlottetown, PEI, Canada) is performing

> the ablations and the RAI scans. Each of these doctors is in a different

> city. The surgeon is the primary care giver.

I know you guys up north do things differently, but this doesn't sound like

an ideal situation.

Most of us (although, for a variety of reasons, not all) are monitored by

endocrinologists. While it's always a good idea to be educated on our own

illnesses, it's that much more important with thyca, especially when the

doctor is not a specialist.

> No other MRIs, X-rays or CT scans.

> No theories yet, I am speaking with my surgeon in the next few days. I

> expect that my next dosage of RAI will also be 100mc, but I will find out

> in the next couple of days.

More important than the dose, I would want to know what the doctor thinks

about the high RAI uptake, with apparently no results. Before doing

another dose, it may be appropriate to consider why the first ablation

seems to have failed, and if some additional protocol (such as lithium) may

be indicated.

-

NYC

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Posted
Posted

> Had blood work done the day of the ablation, before I injested the 100mc

> of I-131.

so you should also have the results from that test, which would let you

know just what your TSH was?

> Yes, I had my scan on July 4, 2002 in Canada. Not a holiday here!

good enough reason :-)

> My surgeon (Halifax, Nova Scotia, Canada) is prescribing my meds (first

> dosage of synthroid - .05 mg., once daily) and monitoring my bloodwork

> while the radiation oncologist (Charlottetown, PEI, Canada) is performing

> the ablations and the RAI scans. Each of these doctors is in a different

> city. The surgeon is the primary care giver.

I know you guys up north do things differently, but this doesn't sound like

an ideal situation.

Most of us (although, for a variety of reasons, not all) are monitored by

endocrinologists. While it's always a good idea to be educated on our own

illnesses, it's that much more important with thyca, especially when the

doctor is not a specialist.

> No other MRIs, X-rays or CT scans.

> No theories yet, I am speaking with my surgeon in the next few days. I

> expect that my next dosage of RAI will also be 100mc, but I will find out

> in the next couple of days.

More important than the dose, I would want to know what the doctor thinks

about the high RAI uptake, with apparently no results. Before doing

another dose, it may be appropriate to consider why the first ablation

seems to have failed, and if some additional protocol (such as lithium) may

be indicated.

-

NYC

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Posted
Posted

:

Right, my first ablation was October 23, 2001.

Had blood work done the day of the ablation, before I injested the 100mc of

I-131.

Yes, I had my scan on July, 2002 in Canada. Not a holiday here!

FYI, no low iodine diet with me prior to both my first ablation in October 2001

and prior to the first RAI scan in July 2002.

My surgeon (Halifax, Nova Scotia, Canada) is prescribing my meds (first dosage

of synthroid - .05 mg., once daily) and monitoring my bloodwork while the

radiation oncologist (Charlottetown, PEI, Canada) is performing the ablations

and the RAI scans. Each of these doctors is in a different city. The surgeon

is the primary care giver.

I began taking my synthroid the day after my first body scan - October 30, 2002,

seven days after my first ablation - October 23, 2001. Sorry for the mix-up.

No other MRIs, X-rays or CT scans.

No theories yet, I am speaking with my surgeon in the next few days. I expect

that my next dosage of RAI will also be 100mc, but I will find out in the next

couple of days.

Regards, Jim

Jim - Re: Pending Ablation

Jim -

> I did not go on a low iodine diet prior to my first ablation on

> October 2001. My radiation oncologist did not mention it to me.

Many of us were in that situation; my doctors also didn't mention the LID

to me, and I didn't learn about it until after my first scan and ablation.

I am

> To clarify, my first ablation with 100 mc of I-131 was on October 23,

> 2002.

I assume you meant to write October 23, 2001? :-)

> My TSH at the time was anywhere from 3.5 (recorded in

> September, 01) to 49.0 (recorded in November, 01).

I'd guess it was probably 49 or higher at the time of your scan,

considering that you had been taking Synthroid for some period of time,

which would lower your TSH.

Did you really not have any blood tests done in the week or two before your

ablation?

> My subsequent RAI scan with 5 mc of I-131 was on

> July 4, 2002, at which time my TSH was 25.6 and my Tg 126.

The TSH is good, for a person off meds; Tg, as you know, not so good.

(did you really have your scan on the 4th of July?)

> The radiation technologist advised me that they do not normally do

> ablations after RAI scans until 6-8 weeks after the RAI scan. The

> reason...., to allow sufficient time for the RAI to leave the body.

> If you take this into consideration, then the second ablation appears

> to be on (relatively) the right schedule.

This is very unusual, but not, I think too unreasonable. From what I have

read, 5 mCi RAI should be well out of the system long before that, but I

rarely object to doctors being overly cautious. (FYI - the LID - low

iodine diet - should also be done before the scan; any time RAI is

ingested)

> What does OTOH stand for?

on the other hand :-)

Now. More questions & comments for you....

- which doctor is overseeing & co-ordinating your care?

- who prescribed the Synthroid? (I ask that because .5 mg is rather low,

even as a startup dose; from your previous letter, it appears that you

were not started on Synthroid for almost a month after your ablation, and

then not increased for at least 3 months - way too long)

- Without including in the equation your time off meds before July's scan,

I'm puzzled that your TSH seems to have been fluctuating, from excellent

suppression in December (amazing on that low dose), to 2.23 in March to .53

in May. It was still not sufficiently suppressed in September, when you

had been back on meds for, I assume, 10 weeks. Ideal TSH suppression for

thyca patients is generally considered to be .10 or less.

- Do you mind telling us where you're being treated? What city, which

hospital?

- Have you had any other scans (MRI, CT, x-ray), either before or since

your TT?

Based on what I'm understanding (well encapsulated tumor, no spread, 100

mCi RAI ablation w/good uptake), it seems odd to me that you would have

such a high increase in Tg. As I mentioned in my previous letter, Tg

antibodies can render Tg levels unreliable, although I think it's unlikely

that you're getting a false positive Tg reading.

I agree that this is all disheartening, but I'm theorizing that it's

possible that the increasing Tg might be healthy thyroid remnant as opposed

to increasing cancer. It sounds as if the surgeon got all the cancer

(discounting microscopic cells, which can be anywhere, and won't show up on

the scan until there are millions of them). If there was a sizable

remnant (possibly implied by the phrase " significant uptake " after post

ablation scan), it may not have all been killed off, and that may be what

is growing.

It may also be that you have rapid turnover of RAI; this is not very

common, but would explain how you could have good uptake without,

apparently, good results.

Do your doctors have any theories about your situation?

Have they said what dose of RAI they are considering?

-

NYC

TT 2/99 dx pap/foll; RAI 100 mCi 3/99 & 4/00; clean scan 3/02;

current TSH ~.06 on .225 levothyroxine

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Posted
Posted

:

Right, my first ablation was October 23, 2001.

Had blood work done the day of the ablation, before I injested the 100mc of

I-131.

Yes, I had my scan on July, 2002 in Canada. Not a holiday here!

FYI, no low iodine diet with me prior to both my first ablation in October 2001

and prior to the first RAI scan in July 2002.

My surgeon (Halifax, Nova Scotia, Canada) is prescribing my meds (first dosage

of synthroid - .05 mg., once daily) and monitoring my bloodwork while the

radiation oncologist (Charlottetown, PEI, Canada) is performing the ablations

and the RAI scans. Each of these doctors is in a different city. The surgeon

is the primary care giver.

I began taking my synthroid the day after my first body scan - October 30, 2002,

seven days after my first ablation - October 23, 2001. Sorry for the mix-up.

No other MRIs, X-rays or CT scans.

No theories yet, I am speaking with my surgeon in the next few days. I expect

that my next dosage of RAI will also be 100mc, but I will find out in the next

couple of days.

Regards, Jim

Jim - Re: Pending Ablation

Jim -

> I did not go on a low iodine diet prior to my first ablation on

> October 2001. My radiation oncologist did not mention it to me.

Many of us were in that situation; my doctors also didn't mention the LID

to me, and I didn't learn about it until after my first scan and ablation.

I am

> To clarify, my first ablation with 100 mc of I-131 was on October 23,

> 2002.

I assume you meant to write October 23, 2001? :-)

> My TSH at the time was anywhere from 3.5 (recorded in

> September, 01) to 49.0 (recorded in November, 01).

I'd guess it was probably 49 or higher at the time of your scan,

considering that you had been taking Synthroid for some period of time,

which would lower your TSH.

Did you really not have any blood tests done in the week or two before your

ablation?

> My subsequent RAI scan with 5 mc of I-131 was on

> July 4, 2002, at which time my TSH was 25.6 and my Tg 126.

The TSH is good, for a person off meds; Tg, as you know, not so good.

(did you really have your scan on the 4th of July?)

> The radiation technologist advised me that they do not normally do

> ablations after RAI scans until 6-8 weeks after the RAI scan. The

> reason...., to allow sufficient time for the RAI to leave the body.

> If you take this into consideration, then the second ablation appears

> to be on (relatively) the right schedule.

This is very unusual, but not, I think too unreasonable. From what I have

read, 5 mCi RAI should be well out of the system long before that, but I

rarely object to doctors being overly cautious. (FYI - the LID - low

iodine diet - should also be done before the scan; any time RAI is

ingested)

> What does OTOH stand for?

on the other hand :-)

Now. More questions & comments for you....

- which doctor is overseeing & co-ordinating your care?

- who prescribed the Synthroid? (I ask that because .5 mg is rather low,

even as a startup dose; from your previous letter, it appears that you

were not started on Synthroid for almost a month after your ablation, and

then not increased for at least 3 months - way too long)

- Without including in the equation your time off meds before July's scan,

I'm puzzled that your TSH seems to have been fluctuating, from excellent

suppression in December (amazing on that low dose), to 2.23 in March to .53

in May. It was still not sufficiently suppressed in September, when you

had been back on meds for, I assume, 10 weeks. Ideal TSH suppression for

thyca patients is generally considered to be .10 or less.

- Do you mind telling us where you're being treated? What city, which

hospital?

- Have you had any other scans (MRI, CT, x-ray), either before or since

your TT?

Based on what I'm understanding (well encapsulated tumor, no spread, 100

mCi RAI ablation w/good uptake), it seems odd to me that you would have

such a high increase in Tg. As I mentioned in my previous letter, Tg

antibodies can render Tg levels unreliable, although I think it's unlikely

that you're getting a false positive Tg reading.

I agree that this is all disheartening, but I'm theorizing that it's

possible that the increasing Tg might be healthy thyroid remnant as opposed

to increasing cancer. It sounds as if the surgeon got all the cancer

(discounting microscopic cells, which can be anywhere, and won't show up on

the scan until there are millions of them). If there was a sizable

remnant (possibly implied by the phrase " significant uptake " after post

ablation scan), it may not have all been killed off, and that may be what

is growing.

It may also be that you have rapid turnover of RAI; this is not very

common, but would explain how you could have good uptake without,

apparently, good results.

Do your doctors have any theories about your situation?

Have they said what dose of RAI they are considering?

-

NYC

TT 2/99 dx pap/foll; RAI 100 mCi 3/99 & 4/00; clean scan 3/02;

current TSH ~.06 on .225 levothyroxine

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Posted
Posted

:

Right, my first ablation was October 23, 2001.

Had blood work done the day of the ablation, before I injested the 100mc of

I-131.

Yes, I had my scan on July, 2002 in Canada. Not a holiday here!

FYI, no low iodine diet with me prior to both my first ablation in October 2001

and prior to the first RAI scan in July 2002.

My surgeon (Halifax, Nova Scotia, Canada) is prescribing my meds (first dosage

of synthroid - .05 mg., once daily) and monitoring my bloodwork while the

radiation oncologist (Charlottetown, PEI, Canada) is performing the ablations

and the RAI scans. Each of these doctors is in a different city. The surgeon

is the primary care giver.

I began taking my synthroid the day after my first body scan - October 30, 2002,

seven days after my first ablation - October 23, 2001. Sorry for the mix-up.

No other MRIs, X-rays or CT scans.

No theories yet, I am speaking with my surgeon in the next few days. I expect

that my next dosage of RAI will also be 100mc, but I will find out in the next

couple of days.

Regards, Jim

Jim - Re: Pending Ablation

Jim -

> I did not go on a low iodine diet prior to my first ablation on

> October 2001. My radiation oncologist did not mention it to me.

Many of us were in that situation; my doctors also didn't mention the LID

to me, and I didn't learn about it until after my first scan and ablation.

I am

> To clarify, my first ablation with 100 mc of I-131 was on October 23,

> 2002.

I assume you meant to write October 23, 2001? :-)

> My TSH at the time was anywhere from 3.5 (recorded in

> September, 01) to 49.0 (recorded in November, 01).

I'd guess it was probably 49 or higher at the time of your scan,

considering that you had been taking Synthroid for some period of time,

which would lower your TSH.

Did you really not have any blood tests done in the week or two before your

ablation?

> My subsequent RAI scan with 5 mc of I-131 was on

> July 4, 2002, at which time my TSH was 25.6 and my Tg 126.

The TSH is good, for a person off meds; Tg, as you know, not so good.

(did you really have your scan on the 4th of July?)

> The radiation technologist advised me that they do not normally do

> ablations after RAI scans until 6-8 weeks after the RAI scan. The

> reason...., to allow sufficient time for the RAI to leave the body.

> If you take this into consideration, then the second ablation appears

> to be on (relatively) the right schedule.

This is very unusual, but not, I think too unreasonable. From what I have

read, 5 mCi RAI should be well out of the system long before that, but I

rarely object to doctors being overly cautious. (FYI - the LID - low

iodine diet - should also be done before the scan; any time RAI is

ingested)

> What does OTOH stand for?

on the other hand :-)

Now. More questions & comments for you....

- which doctor is overseeing & co-ordinating your care?

- who prescribed the Synthroid? (I ask that because .5 mg is rather low,

even as a startup dose; from your previous letter, it appears that you

were not started on Synthroid for almost a month after your ablation, and

then not increased for at least 3 months - way too long)

- Without including in the equation your time off meds before July's scan,

I'm puzzled that your TSH seems to have been fluctuating, from excellent

suppression in December (amazing on that low dose), to 2.23 in March to .53

in May. It was still not sufficiently suppressed in September, when you

had been back on meds for, I assume, 10 weeks. Ideal TSH suppression for

thyca patients is generally considered to be .10 or less.

- Do you mind telling us where you're being treated? What city, which

hospital?

- Have you had any other scans (MRI, CT, x-ray), either before or since

your TT?

Based on what I'm understanding (well encapsulated tumor, no spread, 100

mCi RAI ablation w/good uptake), it seems odd to me that you would have

such a high increase in Tg. As I mentioned in my previous letter, Tg

antibodies can render Tg levels unreliable, although I think it's unlikely

that you're getting a false positive Tg reading.

I agree that this is all disheartening, but I'm theorizing that it's

possible that the increasing Tg might be healthy thyroid remnant as opposed

to increasing cancer. It sounds as if the surgeon got all the cancer

(discounting microscopic cells, which can be anywhere, and won't show up on

the scan until there are millions of them). If there was a sizable

remnant (possibly implied by the phrase " significant uptake " after post

ablation scan), it may not have all been killed off, and that may be what

is growing.

It may also be that you have rapid turnover of RAI; this is not very

common, but would explain how you could have good uptake without,

apparently, good results.

Do your doctors have any theories about your situation?

Have they said what dose of RAI they are considering?

-

NYC

TT 2/99 dx pap/foll; RAI 100 mCi 3/99 & 4/00; clean scan 3/02;

current TSH ~.06 on .225 levothyroxine

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Posted
Posted

:

The surgeon (who lives and works in Halifax, Nova Scotia - another

province/state) is not an internist She works in the Encronology Department of

the Hospital, in the surgical area. She specializes in thyroids.

I believe the radiation oncologist (who lives and works in Charlottetown, Prince

Island - a different province/state), who is responsible for the RAI

treatment should have been the one that was responsible for the level of my TSH

the day of the ablation, but I do not think that she knew what it was.

Otherwise, I highly doubt that she would have proceeded with the ablation with

such a low TSH which, I am beginning to believe is probably the reason that the

RAI had little or no effect on the thyroid remenants. By the way, the radiation

oncologist was not present the day of the ablation. She had asked a GP who

works with her to handle my case. While the GP has been working in the Oncology

Department for some time, I doubt that she knew the TSH blood level when the

ablation was done. The RAI 100mc of I-131 was given to be by a radiation

technologist, not an MD. The GP came in to my room some time later to see how I

was doing.

What do you think?

Jim

Re: Jim - Re: Pending Ablation

jimj88 wrote:

> ....I was on cytomel shortly (within a couple of days) after my

> surgery on August 27, 2001. Cytomel, unlike synthroid, can leave the

> body more quickly (within two weeks, so I understand) once it is

> stopped. I believe, if my memory serves me correct, that I

> ceased taking my cytomel two weeks (October 8 or 9, 2001) before my

> first ablation on October 23, 2001.

That sounds just right. Many of us don't take Cytomel before our 1st

ablation, because there's often enough remnant to make the descent into

hypodom tolerable. But some doctors prescribe it, and as long as it's

stopped 2 weeks ahead, it shouldn't affect scanning TSH at all.

> As I may have noted to you ealier, my surgeon or internist is

> monitoring my blood work and the levels of my thyroid medication.

Is your surgeon the same person as your internist?

> She would not, however, have seen the blood work that was done the day of

>

> my first ablation, when the TSH was 4.08. ..... Also, I do not

> believe the administrator of the 100 mc of the I-131 was aware of the

> 4.08 TSH blood level ....

> How does this change things?

I'm not sure if you're asking how things are changed by the fact that

possibly no one knew what your TSH was on that day, or by the fact that

your TSH was so low regardless of who might have known.

Honestly, if neither the surgeon, who's coordinating your care, nor the

nuclear med doctor was aware of your TSH level on that day, then I'd say

it's a good hint that things are already falling through the cracks.

Somebody should be in charge of saying " okay, go ahead with the scan " , and

that person should have checked to be sure everything was in order first.

OTOH, if that same someone was aware of your blood levels, and made a

judgment call to proceed anyway, well, then that's a different matter. I

don't know if I'd agree with the decision, but it's not my place to make

the call, and I can respect the decision to do it.

To me, it would matter which was the case.

-

NYC

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Posted
Posted

:

The surgeon (who lives and works in Halifax, Nova Scotia - another

province/state) is not an internist She works in the Encronology Department of

the Hospital, in the surgical area. She specializes in thyroids.

I believe the radiation oncologist (who lives and works in Charlottetown, Prince

Island - a different province/state), who is responsible for the RAI

treatment should have been the one that was responsible for the level of my TSH

the day of the ablation, but I do not think that she knew what it was.

Otherwise, I highly doubt that she would have proceeded with the ablation with

such a low TSH which, I am beginning to believe is probably the reason that the

RAI had little or no effect on the thyroid remenants. By the way, the radiation

oncologist was not present the day of the ablation. She had asked a GP who

works with her to handle my case. While the GP has been working in the Oncology

Department for some time, I doubt that she knew the TSH blood level when the

ablation was done. The RAI 100mc of I-131 was given to be by a radiation

technologist, not an MD. The GP came in to my room some time later to see how I

was doing.

What do you think?

Jim

Re: Jim - Re: Pending Ablation

jimj88 wrote:

> ....I was on cytomel shortly (within a couple of days) after my

> surgery on August 27, 2001. Cytomel, unlike synthroid, can leave the

> body more quickly (within two weeks, so I understand) once it is

> stopped. I believe, if my memory serves me correct, that I

> ceased taking my cytomel two weeks (October 8 or 9, 2001) before my

> first ablation on October 23, 2001.

That sounds just right. Many of us don't take Cytomel before our 1st

ablation, because there's often enough remnant to make the descent into

hypodom tolerable. But some doctors prescribe it, and as long as it's

stopped 2 weeks ahead, it shouldn't affect scanning TSH at all.

> As I may have noted to you ealier, my surgeon or internist is

> monitoring my blood work and the levels of my thyroid medication.

Is your surgeon the same person as your internist?

> She would not, however, have seen the blood work that was done the day of

>

> my first ablation, when the TSH was 4.08. ..... Also, I do not

> believe the administrator of the 100 mc of the I-131 was aware of the

> 4.08 TSH blood level ....

> How does this change things?

I'm not sure if you're asking how things are changed by the fact that

possibly no one knew what your TSH was on that day, or by the fact that

your TSH was so low regardless of who might have known.

Honestly, if neither the surgeon, who's coordinating your care, nor the

nuclear med doctor was aware of your TSH level on that day, then I'd say

it's a good hint that things are already falling through the cracks.

Somebody should be in charge of saying " okay, go ahead with the scan " , and

that person should have checked to be sure everything was in order first.

OTOH, if that same someone was aware of your blood levels, and made a

judgment call to proceed anyway, well, then that's a different matter. I

don't know if I'd agree with the decision, but it's not my place to make

the call, and I can respect the decision to do it.

To me, it would matter which was the case.

-

NYC

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Posted
Posted

:

The surgeon (who lives and works in Halifax, Nova Scotia - another

province/state) is not an internist She works in the Encronology Department of

the Hospital, in the surgical area. She specializes in thyroids.

I believe the radiation oncologist (who lives and works in Charlottetown, Prince

Island - a different province/state), who is responsible for the RAI

treatment should have been the one that was responsible for the level of my TSH

the day of the ablation, but I do not think that she knew what it was.

Otherwise, I highly doubt that she would have proceeded with the ablation with

such a low TSH which, I am beginning to believe is probably the reason that the

RAI had little or no effect on the thyroid remenants. By the way, the radiation

oncologist was not present the day of the ablation. She had asked a GP who

works with her to handle my case. While the GP has been working in the Oncology

Department for some time, I doubt that she knew the TSH blood level when the

ablation was done. The RAI 100mc of I-131 was given to be by a radiation

technologist, not an MD. The GP came in to my room some time later to see how I

was doing.

What do you think?

Jim

Re: Jim - Re: Pending Ablation

jimj88 wrote:

> ....I was on cytomel shortly (within a couple of days) after my

> surgery on August 27, 2001. Cytomel, unlike synthroid, can leave the

> body more quickly (within two weeks, so I understand) once it is

> stopped. I believe, if my memory serves me correct, that I

> ceased taking my cytomel two weeks (October 8 or 9, 2001) before my

> first ablation on October 23, 2001.

That sounds just right. Many of us don't take Cytomel before our 1st

ablation, because there's often enough remnant to make the descent into

hypodom tolerable. But some doctors prescribe it, and as long as it's

stopped 2 weeks ahead, it shouldn't affect scanning TSH at all.

> As I may have noted to you ealier, my surgeon or internist is

> monitoring my blood work and the levels of my thyroid medication.

Is your surgeon the same person as your internist?

> She would not, however, have seen the blood work that was done the day of

>

> my first ablation, when the TSH was 4.08. ..... Also, I do not

> believe the administrator of the 100 mc of the I-131 was aware of the

> 4.08 TSH blood level ....

> How does this change things?

I'm not sure if you're asking how things are changed by the fact that

possibly no one knew what your TSH was on that day, or by the fact that

your TSH was so low regardless of who might have known.

Honestly, if neither the surgeon, who's coordinating your care, nor the

nuclear med doctor was aware of your TSH level on that day, then I'd say

it's a good hint that things are already falling through the cracks.

Somebody should be in charge of saying " okay, go ahead with the scan " , and

that person should have checked to be sure everything was in order first.

OTOH, if that same someone was aware of your blood levels, and made a

judgment call to proceed anyway, well, then that's a different matter. I

don't know if I'd agree with the decision, but it's not my place to make

the call, and I can respect the decision to do it.

To me, it would matter which was the case.

-

NYC

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Posted
Posted

Jim - I like this response! - the somebody who should be in charge sounds like

Dr Costain who took a real serious interest in a case - we weren't cancer

patients who had " nothing to worry about like some of the other cases " . Our

cases were just as important especially because there is no once and for all it

is cured time on your life and you'll never have to come back!! He was on the

phone to me at home in the evenings when any blood work came back and was always

studying and ooking for new information... Too bad he isn't here anymore. I am

going to pull my file again at work and get my old blood work results.... Listen

to kabob - she sure sounds like she would call a spade a spade... Hopefully

Dr Higgins will be duley impressed byy your interest in your health and respect

yuor concern for your health...

Let me know what you hear!

Sorry I was in a rush - had gymnastics at 5:30 , Doug had an appointment

at 5:30 and we had a parents meeting at 5:30 for gym...

Lori

Re: Jim - Re: Pending Ablation

jimj88 wrote:

> ....I was on cytomel shortly (within a couple of days) after my

> surgery on August 27, 2001. Cytomel, unlike synthroid, can leave the

> body more quickly (within two weeks, so I understand) once it is

> stopped. I believe, if my memory serves me correct, that I

> ceased taking my cytomel two weeks (October 8 or 9, 2001) before my

> first ablation on October 23, 2001.

That sounds just right. Many of us don't take Cytomel before our 1st

ablation, because there's often enough remnant to make the descent into

hypodom tolerable. But some doctors prescribe it, and as long as it's

stopped 2 weeks ahead, it shouldn't affect scanning TSH at all.

> As I may have noted to you ealier, my surgeon or internist is

> monitoring my blood work and the levels of my thyroid medication.

Is your surgeon the same person as your internist?

> She would not, however, have seen the blood work that was done the day of

>

> my first ablation, when the TSH was 4.08. ..... Also, I do not

> believe the administrator of the 100 mc of the I-131 was aware of the

> 4.08 TSH blood level ....

> How does this change things?

I'm not sure if you're asking how things are changed by the fact that

possibly no one knew what your TSH was on that day, or by the fact that

your TSH was so low regardless of who might have known.

Honestly, if neither the surgeon, who's coordinating your care, nor the

nuclear med doctor was aware of your TSH level on that day, then I'd say

it's a good hint that things are already falling through the cracks.

Somebody should be in charge of saying " okay, go ahead with the scan " , and

that person should have checked to be sure everything was in order first.

OTOH, if that same someone was aware of your blood levels, and made a

judgment call to proceed anyway, well, then that's a different matter. I

don't know if I'd agree with the decision, but it's not my place to make

the call, and I can respect the decision to do it.

To me, it would matter which was the case.

-

NYC

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Posted
Posted

Jim - I like this response! - the somebody who should be in charge sounds like

Dr Costain who took a real serious interest in a case - we weren't cancer

patients who had " nothing to worry about like some of the other cases " . Our

cases were just as important especially because there is no once and for all it

is cured time on your life and you'll never have to come back!! He was on the

phone to me at home in the evenings when any blood work came back and was always

studying and ooking for new information... Too bad he isn't here anymore. I am

going to pull my file again at work and get my old blood work results.... Listen

to kabob - she sure sounds like she would call a spade a spade... Hopefully

Dr Higgins will be duley impressed byy your interest in your health and respect

yuor concern for your health...

Let me know what you hear!

Sorry I was in a rush - had gymnastics at 5:30 , Doug had an appointment

at 5:30 and we had a parents meeting at 5:30 for gym...

Lori

Re: Jim - Re: Pending Ablation

jimj88 wrote:

> ....I was on cytomel shortly (within a couple of days) after my

> surgery on August 27, 2001. Cytomel, unlike synthroid, can leave the

> body more quickly (within two weeks, so I understand) once it is

> stopped. I believe, if my memory serves me correct, that I

> ceased taking my cytomel two weeks (October 8 or 9, 2001) before my

> first ablation on October 23, 2001.

That sounds just right. Many of us don't take Cytomel before our 1st

ablation, because there's often enough remnant to make the descent into

hypodom tolerable. But some doctors prescribe it, and as long as it's

stopped 2 weeks ahead, it shouldn't affect scanning TSH at all.

> As I may have noted to you ealier, my surgeon or internist is

> monitoring my blood work and the levels of my thyroid medication.

Is your surgeon the same person as your internist?

> She would not, however, have seen the blood work that was done the day of

>

> my first ablation, when the TSH was 4.08. ..... Also, I do not

> believe the administrator of the 100 mc of the I-131 was aware of the

> 4.08 TSH blood level ....

> How does this change things?

I'm not sure if you're asking how things are changed by the fact that

possibly no one knew what your TSH was on that day, or by the fact that

your TSH was so low regardless of who might have known.

Honestly, if neither the surgeon, who's coordinating your care, nor the

nuclear med doctor was aware of your TSH level on that day, then I'd say

it's a good hint that things are already falling through the cracks.

Somebody should be in charge of saying " okay, go ahead with the scan " , and

that person should have checked to be sure everything was in order first.

OTOH, if that same someone was aware of your blood levels, and made a

judgment call to proceed anyway, well, then that's a different matter. I

don't know if I'd agree with the decision, but it's not my place to make

the call, and I can respect the decision to do it.

To me, it would matter which was the case.

-

NYC

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Posted
Posted

Jim - I like this response! - the somebody who should be in charge sounds like

Dr Costain who took a real serious interest in a case - we weren't cancer

patients who had " nothing to worry about like some of the other cases " . Our

cases were just as important especially because there is no once and for all it

is cured time on your life and you'll never have to come back!! He was on the

phone to me at home in the evenings when any blood work came back and was always

studying and ooking for new information... Too bad he isn't here anymore. I am

going to pull my file again at work and get my old blood work results.... Listen

to kabob - she sure sounds like she would call a spade a spade... Hopefully

Dr Higgins will be duley impressed byy your interest in your health and respect

yuor concern for your health...

Let me know what you hear!

Sorry I was in a rush - had gymnastics at 5:30 , Doug had an appointment

at 5:30 and we had a parents meeting at 5:30 for gym...

Lori

Re: Jim - Re: Pending Ablation

jimj88 wrote:

> ....I was on cytomel shortly (within a couple of days) after my

> surgery on August 27, 2001. Cytomel, unlike synthroid, can leave the

> body more quickly (within two weeks, so I understand) once it is

> stopped. I believe, if my memory serves me correct, that I

> ceased taking my cytomel two weeks (October 8 or 9, 2001) before my

> first ablation on October 23, 2001.

That sounds just right. Many of us don't take Cytomel before our 1st

ablation, because there's often enough remnant to make the descent into

hypodom tolerable. But some doctors prescribe it, and as long as it's

stopped 2 weeks ahead, it shouldn't affect scanning TSH at all.

> As I may have noted to you ealier, my surgeon or internist is

> monitoring my blood work and the levels of my thyroid medication.

Is your surgeon the same person as your internist?

> She would not, however, have seen the blood work that was done the day of

>

> my first ablation, when the TSH was 4.08. ..... Also, I do not

> believe the administrator of the 100 mc of the I-131 was aware of the

> 4.08 TSH blood level ....

> How does this change things?

I'm not sure if you're asking how things are changed by the fact that

possibly no one knew what your TSH was on that day, or by the fact that

your TSH was so low regardless of who might have known.

Honestly, if neither the surgeon, who's coordinating your care, nor the

nuclear med doctor was aware of your TSH level on that day, then I'd say

it's a good hint that things are already falling through the cracks.

Somebody should be in charge of saying " okay, go ahead with the scan " , and

that person should have checked to be sure everything was in order first.

OTOH, if that same someone was aware of your blood levels, and made a

judgment call to proceed anyway, well, then that's a different matter. I

don't know if I'd agree with the decision, but it's not my place to make

the call, and I can respect the decision to do it.

To me, it would matter which was the case.

-

NYC

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Posted
Posted

:

The level of my TSH the day (October 23, 2001) that I got my first ablation dose

of I-131 (100mc) was 4.08 and the Tg was 49. I had been of my cytomel for two

weeks prior to the ablation and felt fine with no symptoms of being hypo the day

of the scan. The surgery for my papilary carcinoma had been August 27, 2001. I

started cytomel shortly the surgery. Switched to synthroid shortly after the

first ablation.

I am wondering if the low TSH (4.08) the day of my ablation is the reason for

the apparent inability of the RAI to effectively do its work?

The blood work for the day (July 2, 2002) that I had my second body scan was TSH

- 25.6 and Tg - 126, with <20 for the TgAb. I had been of my synthroid for 4

weeks and my cytomel for 2 weeks at that time. I had no ill effects from being

of my meds, ie. not tired, not lethargic, etc. If fact I went for a 2 mile jog

that morning and felt great.

My latest bloodwork taken on September 16, 2002 shows TSH - .96, Tg - 100 and

<20 TgAb. At this time I was on my synthroid, dosage .125.

I am due for an ablation next Wednesday. I have been of my synthroid for 3

weeks and the cytomel for 1 week. Again I feel great and have no signs of being

hypo? If the day (October 16, 2002) my ablation is scheduled, for my TSH is

low, ie. 5-15 (as compared to 30), should I have the I-131? What level should

the TSH be for optimal RAI absorption?

I am concerned?

The following are some questions that I posed to my Endo surgeon yesterday:

" 1. If the range for TG is less than 83.6, how serious a mark is the 100 TG?

2. I read that a second ablation can be done anywhere from 6 to 12 months

following the first and the radioactive iodine can still be working on killing

the cancer cells up to 6-12 months following the first ablation. In my case, it

will be just about a year from the time of my first ablation (October 23, 2001)

to the time of my second (October 16, 2002). Was this too long? Should I have

had my second ablation six months ago?

3. I understand that the dosage of I-131 that you receive for an ablation is

based, in part, on the stage of the cancer at the time of surgery. What was the

size of the tumor that you removed? The standard dosage for radioactive

ablative iodine is, I have been told, anywhere from 100-200 mc. Was the 100 mc

of radioactive iodine that I received sufficient for my particular case. Should

I have had more than 100 mc.

4 (a). The day of my first ablation on October 23, 2001, my TSH reading was

4.08. As the blood was only taken on the morning of my admittance those (the

radiation technologist and not the radiation oncologist, she was away - a GP who

has worked with her for some time administered my admission) administering the

dosage of 100mc of I-131 would not have had the TSH level when they gave me the

100mc of I-131. I understand that for the radioactive iodine to work most

effectively, your TSH level should be 30 or greater? Should I have been given

the dosage of 100 mc of I-131 radioactive iodine when my TSH was so low, ie.

4.08?

Might the low TSH level be the reason for the apparent resulting ineffectiveness

of the first ablation and the radiologist questioning the results of my July 4,

2002, full body scan? He stated, in part, in his July 9, 2002, report: " It is

unclear why the thyroid remains able to accumulate such a significant activity,

however, with the patient apparently having received 100 mc. of I-131 in October

2001. Was there any reason for the poor thyroid uptake at that time, eg.

Iodinated contrast, previous Myodil myelogram, antithyroid drugs, etc.? "

(B) I have read consistently where a low iodine diet is important before having

a radioactive iodine ablation or a radioactive scan. How important do you fell a

low iodine diet is prior to an ablation or a radioactive body scan? I am a big

eater of dairy products (which are high in iodine), eg. Milk, ice cream, butter,

margarine. Could the fact that I was not on such a low iodine diet before my

ablation on October 23, 2001, combined with the fact that there was still some

healthy thyroid tissue remaining after my surgery (as you have stated to me),

also be causes for the for the radioactive iodine not " apparently " doing its

job?

Another point for you to consider in this regard is that for the two weeks

leading up to both my first ablation on October 23, 2001, and my RAI scan on

July 2, 2002, when I was of my cytomel (and had been of the synthroid for four

weeks) I had no symptoms of hypothyroidism, ie tired, lethargic, no energy,

etc.. In fact, on the days when I went into the hospital for my October 23,

2001, ablation and on July 2, 2002 for my RAI scan, I went for a early morning

two mile jog and felt great. Does this not mean that there was healthy thyroid

present actively producing thyroid hormone?

5. Following my ablation on October 23, 2001, I was released from the hospital

the next day, October 24, 2001. The morning of the 24th I was urged by staff to

drink plenty of liquids to rid my body of the radioactive iodine. By 1:00 pm I

had been released.

I understand that they want the radioactive iodine to be expelled quickly to

prevent contamination in other areas of the body, ie. bladder, salivary glands.

In my case, was the 24 hour period enough time for the radioactive iodine to

work? Chould drinking so much water so soon after receiving the I-131 have

diluted it to the point that it couldn't work at its maximum strength?

6. My blood results following my first ablation on October 23, 2001, have seemed

to be quite good. Please correct me if I am wrong.

On December 19, 2001, the TSH was .07, while the Tg was 72.8.

On March 27, 2002 the TSH was 2.23, while the Tg was 37.5 (a decrease from

December and " maybe " an indication that the radioactive iodine was doing its

work?).

On May 31, 2002 the TSH was .53, while the Tg was 15.2 (a further decrease from

March and again " maybe " an indication that the radioactive iodine was doing its

work?).

On July 2, 2002 the TSH was 25.6 (possibly high because I had been off my

synthroid for four weeks and my cytomel for two weeks?), while the Tg was 126

(could the rise from May again - as with the TSH - be explained because I was

off my meds?).

On September 16, 2002 the TSH was .96 (good?), while the Tg was 100 (not so

good?).

Why was the September 2002 Tg so high relative to the May 31, 2002 report? Could

it be because I was of my meds during the time prior to the July 2, 2002, scan?

7. If the second ablation that I am to have next week, October 16, 2002, does

not show the desired results, what are our next steps? "

Regards, Jim

Re: Jim - Re: Pending Ablation

> Had blood work done the day of the ablation, before I injested the 100mc

> of I-131.

so you should also have the results from that test, which would let you

know just what your TSH was?

> Yes, I had my scan on July 4, 2002 in Canada. Not a holiday here!

good enough reason :-)

> My surgeon (Halifax, Nova Scotia, Canada) is prescribing my meds (first

> dosage of synthroid - .05 mg., once daily) and monitoring my bloodwork

> while the radiation oncologist (Charlottetown, PEI, Canada) is performing

> the ablations and the RAI scans. Each of these doctors is in a different

> city. The surgeon is the primary care giver.

I know you guys up north do things differently, but this doesn't sound like

an ideal situation.

Most of us (although, for a variety of reasons, not all) are monitored by

endocrinologists. While it's always a good idea to be educated on our own

illnesses, it's that much more important with thyca, especially when the

doctor is not a specialist.

> No other MRIs, X-rays or CT scans.

> No theories yet, I am speaking with my surgeon in the next few days. I

> expect that my next dosage of RAI will also be 100mc, but I will find out

> in the next couple of days.

More important than the dose, I would want to know what the doctor thinks

about the high RAI uptake, with apparently no results. Before doing

another dose, it may be appropriate to consider why the first ablation

seems to have failed, and if some additional protocol (such as lithium) may

be indicated.

-

NYC

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Posted
Posted

:

The level of my TSH the day (October 23, 2001) that I got my first ablation dose

of I-131 (100mc) was 4.08 and the Tg was 49. I had been of my cytomel for two

weeks prior to the ablation and felt fine with no symptoms of being hypo the day

of the scan. The surgery for my papilary carcinoma had been August 27, 2001. I

started cytomel shortly the surgery. Switched to synthroid shortly after the

first ablation.

I am wondering if the low TSH (4.08) the day of my ablation is the reason for

the apparent inability of the RAI to effectively do its work?

The blood work for the day (July 2, 2002) that I had my second body scan was TSH

- 25.6 and Tg - 126, with <20 for the TgAb. I had been of my synthroid for 4

weeks and my cytomel for 2 weeks at that time. I had no ill effects from being

of my meds, ie. not tired, not lethargic, etc. If fact I went for a 2 mile jog

that morning and felt great.

My latest bloodwork taken on September 16, 2002 shows TSH - .96, Tg - 100 and

<20 TgAb. At this time I was on my synthroid, dosage .125.

I am due for an ablation next Wednesday. I have been of my synthroid for 3

weeks and the cytomel for 1 week. Again I feel great and have no signs of being

hypo? If the day (October 16, 2002) my ablation is scheduled, for my TSH is

low, ie. 5-15 (as compared to 30), should I have the I-131? What level should

the TSH be for optimal RAI absorption?

I am concerned?

The following are some questions that I posed to my Endo surgeon yesterday:

" 1. If the range for TG is less than 83.6, how serious a mark is the 100 TG?

2. I read that a second ablation can be done anywhere from 6 to 12 months

following the first and the radioactive iodine can still be working on killing

the cancer cells up to 6-12 months following the first ablation. In my case, it

will be just about a year from the time of my first ablation (October 23, 2001)

to the time of my second (October 16, 2002). Was this too long? Should I have

had my second ablation six months ago?

3. I understand that the dosage of I-131 that you receive for an ablation is

based, in part, on the stage of the cancer at the time of surgery. What was the

size of the tumor that you removed? The standard dosage for radioactive

ablative iodine is, I have been told, anywhere from 100-200 mc. Was the 100 mc

of radioactive iodine that I received sufficient for my particular case. Should

I have had more than 100 mc.

4 (a). The day of my first ablation on October 23, 2001, my TSH reading was

4.08. As the blood was only taken on the morning of my admittance those (the

radiation technologist and not the radiation oncologist, she was away - a GP who

has worked with her for some time administered my admission) administering the

dosage of 100mc of I-131 would not have had the TSH level when they gave me the

100mc of I-131. I understand that for the radioactive iodine to work most

effectively, your TSH level should be 30 or greater? Should I have been given

the dosage of 100 mc of I-131 radioactive iodine when my TSH was so low, ie.

4.08?

Might the low TSH level be the reason for the apparent resulting ineffectiveness

of the first ablation and the radiologist questioning the results of my July 4,

2002, full body scan? He stated, in part, in his July 9, 2002, report: " It is

unclear why the thyroid remains able to accumulate such a significant activity,

however, with the patient apparently having received 100 mc. of I-131 in October

2001. Was there any reason for the poor thyroid uptake at that time, eg.

Iodinated contrast, previous Myodil myelogram, antithyroid drugs, etc.? "

(B) I have read consistently where a low iodine diet is important before having

a radioactive iodine ablation or a radioactive scan. How important do you fell a

low iodine diet is prior to an ablation or a radioactive body scan? I am a big

eater of dairy products (which are high in iodine), eg. Milk, ice cream, butter,

margarine. Could the fact that I was not on such a low iodine diet before my

ablation on October 23, 2001, combined with the fact that there was still some

healthy thyroid tissue remaining after my surgery (as you have stated to me),

also be causes for the for the radioactive iodine not " apparently " doing its

job?

Another point for you to consider in this regard is that for the two weeks

leading up to both my first ablation on October 23, 2001, and my RAI scan on

July 2, 2002, when I was of my cytomel (and had been of the synthroid for four

weeks) I had no symptoms of hypothyroidism, ie tired, lethargic, no energy,

etc.. In fact, on the days when I went into the hospital for my October 23,

2001, ablation and on July 2, 2002 for my RAI scan, I went for a early morning

two mile jog and felt great. Does this not mean that there was healthy thyroid

present actively producing thyroid hormone?

5. Following my ablation on October 23, 2001, I was released from the hospital

the next day, October 24, 2001. The morning of the 24th I was urged by staff to

drink plenty of liquids to rid my body of the radioactive iodine. By 1:00 pm I

had been released.

I understand that they want the radioactive iodine to be expelled quickly to

prevent contamination in other areas of the body, ie. bladder, salivary glands.

In my case, was the 24 hour period enough time for the radioactive iodine to

work? Chould drinking so much water so soon after receiving the I-131 have

diluted it to the point that it couldn't work at its maximum strength?

6. My blood results following my first ablation on October 23, 2001, have seemed

to be quite good. Please correct me if I am wrong.

On December 19, 2001, the TSH was .07, while the Tg was 72.8.

On March 27, 2002 the TSH was 2.23, while the Tg was 37.5 (a decrease from

December and " maybe " an indication that the radioactive iodine was doing its

work?).

On May 31, 2002 the TSH was .53, while the Tg was 15.2 (a further decrease from

March and again " maybe " an indication that the radioactive iodine was doing its

work?).

On July 2, 2002 the TSH was 25.6 (possibly high because I had been off my

synthroid for four weeks and my cytomel for two weeks?), while the Tg was 126

(could the rise from May again - as with the TSH - be explained because I was

off my meds?).

On September 16, 2002 the TSH was .96 (good?), while the Tg was 100 (not so

good?).

Why was the September 2002 Tg so high relative to the May 31, 2002 report? Could

it be because I was of my meds during the time prior to the July 2, 2002, scan?

7. If the second ablation that I am to have next week, October 16, 2002, does

not show the desired results, what are our next steps? "

Regards, Jim

Re: Jim - Re: Pending Ablation

> Had blood work done the day of the ablation, before I injested the 100mc

> of I-131.

so you should also have the results from that test, which would let you

know just what your TSH was?

> Yes, I had my scan on July 4, 2002 in Canada. Not a holiday here!

good enough reason :-)

> My surgeon (Halifax, Nova Scotia, Canada) is prescribing my meds (first

> dosage of synthroid - .05 mg., once daily) and monitoring my bloodwork

> while the radiation oncologist (Charlottetown, PEI, Canada) is performing

> the ablations and the RAI scans. Each of these doctors is in a different

> city. The surgeon is the primary care giver.

I know you guys up north do things differently, but this doesn't sound like

an ideal situation.

Most of us (although, for a variety of reasons, not all) are monitored by

endocrinologists. While it's always a good idea to be educated on our own

illnesses, it's that much more important with thyca, especially when the

doctor is not a specialist.

> No other MRIs, X-rays or CT scans.

> No theories yet, I am speaking with my surgeon in the next few days. I

> expect that my next dosage of RAI will also be 100mc, but I will find out

> in the next couple of days.

More important than the dose, I would want to know what the doctor thinks

about the high RAI uptake, with apparently no results. Before doing

another dose, it may be appropriate to consider why the first ablation

seems to have failed, and if some additional protocol (such as lithium) may

be indicated.

-

NYC

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Share on other sites
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Posted
Posted

:

The level of my TSH the day (October 23, 2001) that I got my first ablation dose

of I-131 (100mc) was 4.08 and the Tg was 49. I had been of my cytomel for two

weeks prior to the ablation and felt fine with no symptoms of being hypo the day

of the scan. The surgery for my papilary carcinoma had been August 27, 2001. I

started cytomel shortly the surgery. Switched to synthroid shortly after the

first ablation.

I am wondering if the low TSH (4.08) the day of my ablation is the reason for

the apparent inability of the RAI to effectively do its work?

The blood work for the day (July 2, 2002) that I had my second body scan was TSH

- 25.6 and Tg - 126, with <20 for the TgAb. I had been of my synthroid for 4

weeks and my cytomel for 2 weeks at that time. I had no ill effects from being

of my meds, ie. not tired, not lethargic, etc. If fact I went for a 2 mile jog

that morning and felt great.

My latest bloodwork taken on September 16, 2002 shows TSH - .96, Tg - 100 and

<20 TgAb. At this time I was on my synthroid, dosage .125.

I am due for an ablation next Wednesday. I have been of my synthroid for 3

weeks and the cytomel for 1 week. Again I feel great and have no signs of being

hypo? If the day (October 16, 2002) my ablation is scheduled, for my TSH is

low, ie. 5-15 (as compared to 30), should I have the I-131? What level should

the TSH be for optimal RAI absorption?

I am concerned?

The following are some questions that I posed to my Endo surgeon yesterday:

" 1. If the range for TG is less than 83.6, how serious a mark is the 100 TG?

2. I read that a second ablation can be done anywhere from 6 to 12 months

following the first and the radioactive iodine can still be working on killing

the cancer cells up to 6-12 months following the first ablation. In my case, it

will be just about a year from the time of my first ablation (October 23, 2001)

to the time of my second (October 16, 2002). Was this too long? Should I have

had my second ablation six months ago?

3. I understand that the dosage of I-131 that you receive for an ablation is

based, in part, on the stage of the cancer at the time of surgery. What was the

size of the tumor that you removed? The standard dosage for radioactive

ablative iodine is, I have been told, anywhere from 100-200 mc. Was the 100 mc

of radioactive iodine that I received sufficient for my particular case. Should

I have had more than 100 mc.

4 (a). The day of my first ablation on October 23, 2001, my TSH reading was

4.08. As the blood was only taken on the morning of my admittance those (the

radiation technologist and not the radiation oncologist, she was away - a GP who

has worked with her for some time administered my admission) administering the

dosage of 100mc of I-131 would not have had the TSH level when they gave me the

100mc of I-131. I understand that for the radioactive iodine to work most

effectively, your TSH level should be 30 or greater? Should I have been given

the dosage of 100 mc of I-131 radioactive iodine when my TSH was so low, ie.

4.08?

Might the low TSH level be the reason for the apparent resulting ineffectiveness

of the first ablation and the radiologist questioning the results of my July 4,

2002, full body scan? He stated, in part, in his July 9, 2002, report: " It is

unclear why the thyroid remains able to accumulate such a significant activity,

however, with the patient apparently having received 100 mc. of I-131 in October

2001. Was there any reason for the poor thyroid uptake at that time, eg.

Iodinated contrast, previous Myodil myelogram, antithyroid drugs, etc.? "

(B) I have read consistently where a low iodine diet is important before having

a radioactive iodine ablation or a radioactive scan. How important do you fell a

low iodine diet is prior to an ablation or a radioactive body scan? I am a big

eater of dairy products (which are high in iodine), eg. Milk, ice cream, butter,

margarine. Could the fact that I was not on such a low iodine diet before my

ablation on October 23, 2001, combined with the fact that there was still some

healthy thyroid tissue remaining after my surgery (as you have stated to me),

also be causes for the for the radioactive iodine not " apparently " doing its

job?

Another point for you to consider in this regard is that for the two weeks

leading up to both my first ablation on October 23, 2001, and my RAI scan on

July 2, 2002, when I was of my cytomel (and had been of the synthroid for four

weeks) I had no symptoms of hypothyroidism, ie tired, lethargic, no energy,

etc.. In fact, on the days when I went into the hospital for my October 23,

2001, ablation and on July 2, 2002 for my RAI scan, I went for a early morning

two mile jog and felt great. Does this not mean that there was healthy thyroid

present actively producing thyroid hormone?

5. Following my ablation on October 23, 2001, I was released from the hospital

the next day, October 24, 2001. The morning of the 24th I was urged by staff to

drink plenty of liquids to rid my body of the radioactive iodine. By 1:00 pm I

had been released.

I understand that they want the radioactive iodine to be expelled quickly to

prevent contamination in other areas of the body, ie. bladder, salivary glands.

In my case, was the 24 hour period enough time for the radioactive iodine to

work? Chould drinking so much water so soon after receiving the I-131 have

diluted it to the point that it couldn't work at its maximum strength?

6. My blood results following my first ablation on October 23, 2001, have seemed

to be quite good. Please correct me if I am wrong.

On December 19, 2001, the TSH was .07, while the Tg was 72.8.

On March 27, 2002 the TSH was 2.23, while the Tg was 37.5 (a decrease from

December and " maybe " an indication that the radioactive iodine was doing its

work?).

On May 31, 2002 the TSH was .53, while the Tg was 15.2 (a further decrease from

March and again " maybe " an indication that the radioactive iodine was doing its

work?).

On July 2, 2002 the TSH was 25.6 (possibly high because I had been off my

synthroid for four weeks and my cytomel for two weeks?), while the Tg was 126

(could the rise from May again - as with the TSH - be explained because I was

off my meds?).

On September 16, 2002 the TSH was .96 (good?), while the Tg was 100 (not so

good?).

Why was the September 2002 Tg so high relative to the May 31, 2002 report? Could

it be because I was of my meds during the time prior to the July 2, 2002, scan?

7. If the second ablation that I am to have next week, October 16, 2002, does

not show the desired results, what are our next steps? "

Regards, Jim

Re: Jim - Re: Pending Ablation

> Had blood work done the day of the ablation, before I injested the 100mc

> of I-131.

so you should also have the results from that test, which would let you

know just what your TSH was?

> Yes, I had my scan on July 4, 2002 in Canada. Not a holiday here!

good enough reason :-)

> My surgeon (Halifax, Nova Scotia, Canada) is prescribing my meds (first

> dosage of synthroid - .05 mg., once daily) and monitoring my bloodwork

> while the radiation oncologist (Charlottetown, PEI, Canada) is performing

> the ablations and the RAI scans. Each of these doctors is in a different

> city. The surgeon is the primary care giver.

I know you guys up north do things differently, but this doesn't sound like

an ideal situation.

Most of us (although, for a variety of reasons, not all) are monitored by

endocrinologists. While it's always a good idea to be educated on our own

illnesses, it's that much more important with thyca, especially when the

doctor is not a specialist.

> No other MRIs, X-rays or CT scans.

> No theories yet, I am speaking with my surgeon in the next few days. I

> expect that my next dosage of RAI will also be 100mc, but I will find out

> in the next couple of days.

More important than the dose, I would want to know what the doctor thinks

about the high RAI uptake, with apparently no results. Before doing

another dose, it may be appropriate to consider why the first ablation

seems to have failed, and if some additional protocol (such as lithium) may

be indicated.

-

NYC

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I'm not , but... TSH is supposed to be around or over *30* for optimal

uptake with RAI. I believe my TSH was 76 when I had mine done.

I was only on cytomel prior to my ablation, and I believe I went off that

three weeks before the RAI. If you're on a T4 hormone, I believe you're

supposed to be off of it for at least 6 weeks before RAI, but I'm not sure

about that... I know someone else can clarify on that one.

Hope this helps,

Age 20

Lump found 10/01

FNA 2/15/02 dx Pap Car.

TT 3/18/02 2cm tumor, 5 lymph nodes infected

RAI 6/6/02 150 mci

Currently on .2 of Levoxyl

> What level should the TSH be for optimal RAI absorption?

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I'm not , but... TSH is supposed to be around or over *30* for optimal

uptake with RAI. I believe my TSH was 76 when I had mine done.

I was only on cytomel prior to my ablation, and I believe I went off that

three weeks before the RAI. If you're on a T4 hormone, I believe you're

supposed to be off of it for at least 6 weeks before RAI, but I'm not sure

about that... I know someone else can clarify on that one.

Hope this helps,

Age 20

Lump found 10/01

FNA 2/15/02 dx Pap Car.

TT 3/18/02 2cm tumor, 5 lymph nodes infected

RAI 6/6/02 150 mci

Currently on .2 of Levoxyl

> What level should the TSH be for optimal RAI absorption?

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> The level of my TSH the day (October 23, 2001) that I got my first

> ablation dose of I-131 (100mc) was 4.08 and the Tg was 49. ....

> I am wondering if the low TSH (4.08) the day of my ablation is the reason

> for the apparent inability of the RAI to effectively do its work?

My understanding is that a low TSH doesn't so much interfere with the

ability of the RAI to do its work, but that it lessens the ability to take

up RAI in the first place. But since you apparently had significant

uptake, I'm reluctant to blame your low TSH on the poor success of your

ablation.

> The blood work for the day (July 2, 2002) that I had my second body scan

> was TSH - 25.6 and Tg - 126, with <20 for the TgAb. I had been of my

> synthroid for 4 weeks and my cytomel for 2 weeks at that time.

perfect scheduling! that's just what many of us do.

> I had no ill effects from being of my meds, ie. not tired, not lethargic,

> etc. If fact I went for a 2 mile jog that morning and felt great.

Well, don't let that get around :-)

Complaining about hypo hell is a major activity here.

Although, if you haven't noticed, " YMMV " is a major slogan - " your mileage

may vary " .

> My latest bloodwork taken on September 16, 2002 shows TSH - .96, Tg - 100

> and <20 TgAb. At this time I was on my synthroid, dosage .125.

Right. We take T4 (ie: Synthroid) to keep our TSH down ( " suppression " is

usually considered to be <.10)

> I am due for an ablation next Wednesday. I have been of my synthroid for

> 3 weeks and the cytomel for 1 week. Again I feel great and have no signs

> of being hypo?

Sounds like you're one of the lucky ones.

You may still crash, and get to enjoy the full hypo experience, or, you may

have to read about it :-)

> If the day (October 16, 2002) my ablation is scheduled, for my TSH is

> low, ie. 5-15 (as compared to 30), should I have the I-131? What level

> should the TSH be for optimal RAI absorption? I am concerned?

You're right to be concerned.

As mentioned, most doctors/hospitals require a minimum of TSH 30

(some require 40 or 50) before they will consider giving I-131.

If I were in your place, I wouldn't go ahead with a TSH below 30.

> The following are some questions that I posed to my Endo surgeon

> yesterday:

>

> " 1. If the range for TG is less than 83.6, how serious a mark is the 100

> TG?

where did you get the range for Tg?

Once we have had a TT and RAI ablation, our aim is zero.

(see http://groups.yahoo.com/group/Thyca/message/2396 and

http://groups.yahoo.com/group/Thyca/message/19827 for discussions on the

meaning of Tg as it applies to us)

> 2. I read that a second ablation can be done anywhere from 6 to 12 months

> following the first and the radioactive iodine can still be working on

> killing the cancer cells up to 6-12 months following the first ablation.

Right.

> In my case, it will be just about a year from the time of my first

> ablation (October 23, 2001) to the time of my second (October 16, 2002).

> Was this too long? Should I have had my second ablation six months ago?

If it was too long, the only reason would be because the first one

apparently didn't do the job, and the extra time would have given the

cancer a time to grow. Thyca is slow growing, however, and waiting 12

months is generally not a problem. I waited 12 months between my first

RAI treatment and my first follow up scan.

> 3. I understand that the dosage of I-131 that you receive for an ablation

> is based, in part, on the stage of the cancer at the time of surgery.

Not really. Staging generally doesn't have the same import in thyroid

cancer as it does for other cancers. RAI dose is based on the amount of

thyroid tissue (malignant or benign) needing to be killed off.

> What was the size of the tumor that you removed?

1.5 cm

(although I didn't remove it myself; I hired a surgeon to do it for me

:-)

> The standard dosage for radioactive ablative iodine is, I have been told,

> anywhere from 100-200 mc.

generally, although it can be as low as 29.9 mCi, the so-called " walking

dose " (not recommended by our Dr. Ain and many others)

> Was the 100 mc of radioactive iodine that I received sufficient for my

> particular case. Should I have had more than 100 mc.

That is a question best answered in retrospect.

But there are more factors in the equation of why an RAI wasn't successful.

- was there enough?

- was it taken up by the thyroid cells?

- was it retained in the thyroid cells long enough to do the job?

> 4 (a). The day of my first ablation on October 23, 2001, my TSH reading

> was 4.08. As the blood was only taken on the morning of my admittance

> those (the radiation technologist and not the radiation oncologist, she

> was away - a GP who has worked with her for some time administered my

> admission) administering the dosage of 100mc of I-131 would not have had

> the TSH level when they gave me the 100mc of I-131. I understand that for

> the radioactive iodine to work most effectively, your TSH level should be

> 30 or greater? Should I have been given the dosage of 100 mc of I-131

> radioactive iodine when my TSH was so low, ie. 4.08?

curious to see what she says.

> .... I went for a early morning two mile jog and felt great. Does this

> not mean that there was healthy thyroid present actively producing

> thyroid hormone?

not necessarily.

you could be lucky and not suffer from being hypo, although your low TSH

indicates you weren't really hypo.

It could be the size of your remnant, or something else.

I think you know our answers to the rest of the questions; I'll be curious

to see how your surgeon answers them.

-

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> As I said, the only thing that makes me hesitate to say that the low TSH &

> lack of LID are the culprits, is that those factors should impede uptake,

> whereas yours seemed to be high.

, do you think the uptake may have been high since Jim had remnants of

thyroid left that the surgeon didn't take out? Maybe the first ablation

fried those, but didn't get the surrounding stuff in the lymph nodes and

such? Or does it not work that way?

Anyhow, I'm glad hear the doctor is doing things differently this time! :)

Best of luck to you, Jim.

Age 20

Lump found 10/01

FNA 2/15/02 dx Pap Car.

TT 3/18/02 2cm tumor, 5 lymph nodes infected

RAI 6/6/02 150 mci

Currently on .2 of Levoxyl

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> As I said, the only thing that makes me hesitate to say that the low TSH &

> lack of LID are the culprits, is that those factors should impede uptake,

> whereas yours seemed to be high.

, do you think the uptake may have been high since Jim had remnants of

thyroid left that the surgeon didn't take out? Maybe the first ablation

fried those, but didn't get the surrounding stuff in the lymph nodes and

such? Or does it not work that way?

Anyhow, I'm glad hear the doctor is doing things differently this time! :)

Best of luck to you, Jim.

Age 20

Lump found 10/01

FNA 2/15/02 dx Pap Car.

TT 3/18/02 2cm tumor, 5 lymph nodes infected

RAI 6/6/02 150 mci

Currently on .2 of Levoxyl

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wrote:

> , do you think the uptake may have been high since Jim had remnants

> of

> thyroid left that the surgeon didn't take out? Maybe the first ablation

> fried those, but didn't get the surrounding stuff in the lymph nodes and

> such? Or does it not work that way?

I don't believe it works quite so neatly (RAI killing off remnant but not

thyca); I think it's more random.

Of course, we all have some amount of post TT remnant; I suspect that if

Jim's was unusually large, he probably would have gotten radiation

thyroiditis from the 100 mCi dose, or at least felt pretty uncomfortable

from the high concentration of radioactivity in his neck.

Also, since his Tg seems to be climbing rather quickly, it implies to me

that it's remnant rather than cancer (I'm guessing on this one; I don't

recall seeing any specific info comparing the speed of remnant Tg v. cancer

Tg growth.)

> Anyhow, I'm glad hear the doctor is doing things differently this time!

> :)

Agreed!

-

NYC

TT 2/99 dx pap/foll; RAI 100 mCi 3/99 & 4/00; clean scan 3/02;

current TSH ~.06 on .225 levothyroxine

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Jim wrote:

> /:

aren't they rich and famous kid actors?

>

********************************************************************************\

*********************

>

> What is radiation thyroiditis?

Briefly, an inflammation of the thyroid caused by radiation (as opposed to

other types of thyroiditis, such as Hashimoto's). See Dr. Rolla's

description at http://groups.yahoo.com/group/Thyca/message/18248

> I didn't at all feel unfomfortable from the radiation dosage to my neck

> with the first ablation eith when I got it or post hospital stay. No

> irratation, no sore throat, no redness, etc. I too, have a strange

> feeling it is remenant.

Right. Which is why I'm guessing that you didn't have a particularly large

remnant. I think most of us have some sensation after an ablative dose;

usually not pain, just an awareness of the site. In general, the more

remnant thyroid cells, the more radiation is concentrated in the small

area, and the more " sensation " (read " pain " ).

> I took your advice , and joined the Canada Chapter of the

> organization. One women has written me and we had the same surgeon in

> the same hospital. Hers was a more difficult case, however. She

> believes wholeheartedly in the surgeon's work. I do too, I asked around,

> with the nurses, at the time of my surgery. I really believe I am in

> good hands with her. Also, when I was speaking with her yesterday, I

> asked if she minded me contacting her and she said not at all.

This all sounds good. I'm delighted you joined the Canadian group.

> Another women from Toronto wrote that her husband's Dr. wants the TSH at

> 150 or more before he performs his RAI work. And you thought my Dr.'s 70

> was high!!!!!

Well, live and learn. Our neighbors to the north are just so exotic

:-)

I think I can guess who that might have been, and I wonder if his doctor

always requires such a high pre RAI TSH, or only in special and stubborn

cases.

> .... In view of the fact that you are not feeling hypo right now, it

> will be interesting to see if your TSH is up in the target zone. "

I think by now, you've got us all on the edge of our seats ....

> I found her comments interesting on her TSH only reaching 24 and then

> falling because I had considerable residulal thyroid tissue in my neck

> that was pumping thyroid horomones into my neck. Sounds like me,

> although my TSH (4.08) did not get that high (24) at the time of my

> ablation.

I agree. Everything about your low TSH says large remnant, except for the

high uptake (and to a lesser degree, the absence of thyroiditis). It

will be very interesting to learn what your upcoming scan reveals.

> Another lady who belongs to both the Canadian and US chapters advised me

> of a drug " Thyrogen " which when injected can artifically raise your

> levels of TSH to the point where you are good for RAI. Have you ever

> heard of individuals getting " thyrogen " to give them that needed boost

> over the top?

Yes, I've heard of it; to the best of my knowledge, it's not done all that

frequently, although personally, I think it's an excellent use of the

drug. Thyrogen is still very new (only approved for general use in Canada

this past summer), and there remains some controversy about appropriate

ways to use it, but in my opinion, boosting an adamantly low TSH is one

great use. I don't know precisely what standards are applied in

determining when a TSH simply won't go any higher on its own.

-

PS - From Dr. (nuclear med doctor):

" ... there is no evidence that under adequate TSH stimulation that the

thyroid will compete with thyroid cancer for uptake. Even under the worst

of conditions where a small amount of very active thyroid tissue takes up

15% of the scan dose, 85% of the scan dose remains to be taken up by

thyroid cancer. Whether or not a scan picks up distant mets is dependent

on

the TSH, not the amount of uptake in the neck. "

http://groups.yahoo.com/group/Thyca/message/9345

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/:

" I don't believe it works quite so neatly (RAI killing off remnant but not

thyca); I think it's more random. Of course, we all have some amount of post

TT remnant; I suspect that if Jim's was unusually large, he probably would have

gotten radiation thyroiditis from the 100 mCi dose, or at least felt pretty

uncomfortable from the high concentration of adioactivity in his neck. Also,

since his Tg seems to be climbing rather quickly, it implies to me that it's

remnant rather than cancer (I'm guessing on this one; I don't

recall seeing any specific info comparing the speed of remnant Tg v. cancer

Tg growth.) "

********************************************************************************\

*********************

What is radiation thyroiditis? I didn't at all feel unfomfortable from the

radiation dosage to my neck with the first ablation eith when I got it or post

hospital stay. No irratation, no sore throat, no redness, etc. I too, have a

strange feeling it is remenant.

I took your advice , and joined the Canada Chapter of the organization.

One women has written me and we had the same surgeon in the same hospital. Hers

was a more difficult case, however. She believes wholeheartedly in the

surgeon's work. I do too, I asked around, with the nurses, at the time of my

surgery. I really believe I am in good hands with her. Also, when I was

speaking with her yesterday, I asked if she minded me contacting her and she

said not at all.

Another women from Toronto wrote that her husband's Dr. wants the TSH at 150 or

more before he performs his RAI work. And you thought my Dr.'s 70 was high!!!!!

Another lady wrote: " Interesting that the QE in Halifax aims for a TSH of 70. I

was originally treated in Chicago where the Nuclear Med. docs required a TSH of

60+ but here in the Oakville/Hamilton (Ontario) area, they require 40+ which

seems to be common in ON. When I was prepped for ablation a few months after

surgery, I became very hypothyroid clinically but my TSH only got up to 24 ( &

in fact began to fall) because I had considerable residual thyroid tissue in my

neck that was pumping thyroid hormones into me. Maybe this is why your TSH was

so low at the time of your last scan in July. In view of the fact that you are

not feeling hypo right now, it will be interesting to see if your TSH is up in

the target zone. "

I found her comments interesting on her TSH only reaching 24 and then falling

because I had considerable residulal thyroid tissue in my neck that was pumping

thyroid horomones into my neck. Sounds like me, although my TSH (4.08) did not

get that high (24) at the time of my ablation.

Another lady who belongs to both the Canadian and US chapters advised me of a

drug " Thyrogen " which when injected can artifically raise your levels of TSH to

the point where you are good for RAI. Have you ever heard of individuals

getting " thyrogen " to give them that needed boost over the top?

Jim

Re: Jim - Re: Pending Ablation

wrote:

> , do you think the uptake may have been high since Jim had remnants

> of

> thyroid left that the surgeon didn't take out? Maybe the first ablation

> fried those, but didn't get the surrounding stuff in the lymph nodes and

> such? Or does it not work that way?

I don't believe it works quite so neatly (RAI killing off remnant but not

thyca); I think it's more random.

Of course, we all have some amount of post TT remnant; I suspect that if

Jim's was unusually large, he probably would have gotten radiation

thyroiditis from the 100 mCi dose, or at least felt pretty uncomfortable

from the high concentration of radioactivity in his neck.

Also, since his Tg seems to be climbing rather quickly, it implies to me

that it's remnant rather than cancer (I'm guessing on this one; I don't

recall seeing any specific info comparing the speed of remnant Tg v. cancer

Tg growth.)

> Anyhow, I'm glad hear the doctor is doing things differently this time!

> :)

Agreed!

-

NYC

TT 2/99 dx pap/foll; RAI 100 mCi 3/99 & 4/00; clean scan 3/02;

current TSH ~.06 on .225 levothyroxine

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Posted
Posted

/:

" I don't believe it works quite so neatly (RAI killing off remnant but not

thyca); I think it's more random. Of course, we all have some amount of post

TT remnant; I suspect that if Jim's was unusually large, he probably would have

gotten radiation thyroiditis from the 100 mCi dose, or at least felt pretty

uncomfortable from the high concentration of adioactivity in his neck. Also,

since his Tg seems to be climbing rather quickly, it implies to me that it's

remnant rather than cancer (I'm guessing on this one; I don't

recall seeing any specific info comparing the speed of remnant Tg v. cancer

Tg growth.) "

********************************************************************************\

*********************

What is radiation thyroiditis? I didn't at all feel unfomfortable from the

radiation dosage to my neck with the first ablation eith when I got it or post

hospital stay. No irratation, no sore throat, no redness, etc. I too, have a

strange feeling it is remenant.

I took your advice , and joined the Canada Chapter of the organization.

One women has written me and we had the same surgeon in the same hospital. Hers

was a more difficult case, however. She believes wholeheartedly in the

surgeon's work. I do too, I asked around, with the nurses, at the time of my

surgery. I really believe I am in good hands with her. Also, when I was

speaking with her yesterday, I asked if she minded me contacting her and she

said not at all.

Another women from Toronto wrote that her husband's Dr. wants the TSH at 150 or

more before he performs his RAI work. And you thought my Dr.'s 70 was high!!!!!

Another lady wrote: " Interesting that the QE in Halifax aims for a TSH of 70. I

was originally treated in Chicago where the Nuclear Med. docs required a TSH of

60+ but here in the Oakville/Hamilton (Ontario) area, they require 40+ which

seems to be common in ON. When I was prepped for ablation a few months after

surgery, I became very hypothyroid clinically but my TSH only got up to 24 ( &

in fact began to fall) because I had considerable residual thyroid tissue in my

neck that was pumping thyroid hormones into me. Maybe this is why your TSH was

so low at the time of your last scan in July. In view of the fact that you are

not feeling hypo right now, it will be interesting to see if your TSH is up in

the target zone. "

I found her comments interesting on her TSH only reaching 24 and then falling

because I had considerable residulal thyroid tissue in my neck that was pumping

thyroid horomones into my neck. Sounds like me, although my TSH (4.08) did not

get that high (24) at the time of my ablation.

Another lady who belongs to both the Canadian and US chapters advised me of a

drug " Thyrogen " which when injected can artifically raise your levels of TSH to

the point where you are good for RAI. Have you ever heard of individuals

getting " thyrogen " to give them that needed boost over the top?

Jim

Re: Jim - Re: Pending Ablation

wrote:

> , do you think the uptake may have been high since Jim had remnants

> of

> thyroid left that the surgeon didn't take out? Maybe the first ablation

> fried those, but didn't get the surrounding stuff in the lymph nodes and

> such? Or does it not work that way?

I don't believe it works quite so neatly (RAI killing off remnant but not

thyca); I think it's more random.

Of course, we all have some amount of post TT remnant; I suspect that if

Jim's was unusually large, he probably would have gotten radiation

thyroiditis from the 100 mCi dose, or at least felt pretty uncomfortable

from the high concentration of radioactivity in his neck.

Also, since his Tg seems to be climbing rather quickly, it implies to me

that it's remnant rather than cancer (I'm guessing on this one; I don't

recall seeing any specific info comparing the speed of remnant Tg v. cancer

Tg growth.)

> Anyhow, I'm glad hear the doctor is doing things differently this time!

> :)

Agreed!

-

NYC

TT 2/99 dx pap/foll; RAI 100 mCi 3/99 & 4/00; clean scan 3/02;

current TSH ~.06 on .225 levothyroxine

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Posted
Posted

/:

" I don't believe it works quite so neatly (RAI killing off remnant but not

thyca); I think it's more random. Of course, we all have some amount of post

TT remnant; I suspect that if Jim's was unusually large, he probably would have

gotten radiation thyroiditis from the 100 mCi dose, or at least felt pretty

uncomfortable from the high concentration of adioactivity in his neck. Also,

since his Tg seems to be climbing rather quickly, it implies to me that it's

remnant rather than cancer (I'm guessing on this one; I don't

recall seeing any specific info comparing the speed of remnant Tg v. cancer

Tg growth.) "

********************************************************************************\

*********************

What is radiation thyroiditis? I didn't at all feel unfomfortable from the

radiation dosage to my neck with the first ablation eith when I got it or post

hospital stay. No irratation, no sore throat, no redness, etc. I too, have a

strange feeling it is remenant.

I took your advice , and joined the Canada Chapter of the organization.

One women has written me and we had the same surgeon in the same hospital. Hers

was a more difficult case, however. She believes wholeheartedly in the

surgeon's work. I do too, I asked around, with the nurses, at the time of my

surgery. I really believe I am in good hands with her. Also, when I was

speaking with her yesterday, I asked if she minded me contacting her and she

said not at all.

Another women from Toronto wrote that her husband's Dr. wants the TSH at 150 or

more before he performs his RAI work. And you thought my Dr.'s 70 was high!!!!!

Another lady wrote: " Interesting that the QE in Halifax aims for a TSH of 70. I

was originally treated in Chicago where the Nuclear Med. docs required a TSH of

60+ but here in the Oakville/Hamilton (Ontario) area, they require 40+ which

seems to be common in ON. When I was prepped for ablation a few months after

surgery, I became very hypothyroid clinically but my TSH only got up to 24 ( &

in fact began to fall) because I had considerable residual thyroid tissue in my

neck that was pumping thyroid hormones into me. Maybe this is why your TSH was

so low at the time of your last scan in July. In view of the fact that you are

not feeling hypo right now, it will be interesting to see if your TSH is up in

the target zone. "

I found her comments interesting on her TSH only reaching 24 and then falling

because I had considerable residulal thyroid tissue in my neck that was pumping

thyroid horomones into my neck. Sounds like me, although my TSH (4.08) did not

get that high (24) at the time of my ablation.

Another lady who belongs to both the Canadian and US chapters advised me of a

drug " Thyrogen " which when injected can artifically raise your levels of TSH to

the point where you are good for RAI. Have you ever heard of individuals

getting " thyrogen " to give them that needed boost over the top?

Jim

Re: Jim - Re: Pending Ablation

wrote:

> , do you think the uptake may have been high since Jim had remnants

> of

> thyroid left that the surgeon didn't take out? Maybe the first ablation

> fried those, but didn't get the surrounding stuff in the lymph nodes and

> such? Or does it not work that way?

I don't believe it works quite so neatly (RAI killing off remnant but not

thyca); I think it's more random.

Of course, we all have some amount of post TT remnant; I suspect that if

Jim's was unusually large, he probably would have gotten radiation

thyroiditis from the 100 mCi dose, or at least felt pretty uncomfortable

from the high concentration of radioactivity in his neck.

Also, since his Tg seems to be climbing rather quickly, it implies to me

that it's remnant rather than cancer (I'm guessing on this one; I don't

recall seeing any specific info comparing the speed of remnant Tg v. cancer

Tg growth.)

> Anyhow, I'm glad hear the doctor is doing things differently this time!

> :)

Agreed!

-

NYC

TT 2/99 dx pap/foll; RAI 100 mCi 3/99 & 4/00; clean scan 3/02;

current TSH ~.06 on .225 levothyroxine

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