CTscan dye & RAI interference

[Guest guest]

> ALSO, we differed on one point that I consider MAJOR regarding CT

> scan and it's interference with RAI. Please look this over and tell

> me if this is or is not a MAJOR treatment issue.

You've read the posts and Dr. Ain's comments & medical references

that this does indeed have an impact on RAI treatment. Your doctor

did offer to do the 24 hr urine test...... What happened to make

you back-down & agree NOT to do the urine test?

> She then got EXTREMELY defensive and firm with me and said,

> " You are not going to come in here and DICTATE to ME how you want me

> to treat you!

In my experience, it is better to ask the doctor for THEIR opinion

first. Then you can consider their comments with other comments you've

read/learned about. Starting the discussion with another doctor's

opinion usually results in confrontation instead of communication.

> She spoke forcefully and very fast and in my current fatigued and

> foggy-brained state I was having a lot of difficulty listening as

> fast as she was speaking. I did ask her if she would slow down a

> little so I could comprehend what she was saying.

Sometimes it helps if you bring another person with you to the

appointment to help with taking notes/asking questions.

> She said that she would be referring me to a Radiologic Onocologist

> who will do the actual RAI inpatient treatment and she would be doing

> everything else. She told me to go off my Synthroid starting tomorrow

> and to start taking Cytomel for the next 4 weeks; then no meds for 2

> weeks; then they would test my tsh to see if it is at least 30.

> I did ask if she recommended following a LID for the last 2 weeks

> before RAI and she said yes.

Sounds like a standard protocol.

> She said that she NEVER does pre-RAI scanning because it

> is " pointless " and could interfere with the RAI effectiveness; She

> said she strongly believes in aggressive doses of at least 100 to 150

> mCi and ALWAYS does this as an inpatient ONLY so as to avoid exposing

> other people's thyroid glands to the radiation. She does a post-RAI

> scan to see if there is good uptake and gets a TG blood test.

This is similar to the views of the endo who administered my RAI -

no pre-scan & dose 100 mCi for basic ablation, 150 mCi with

regional mets, 150-200 mCi distant mets.

> Then, 6 months post RAI, I go hypo for another scan and TG level and

> then again at 1 year. If there is ever a TG level greater than 0, or

> if the scan shows uptake anywhere, then the RAI is repeated.

There are variations in scanning/monitoring, but it appears that

most folks wait 1 year for another scan.

> She told me that my life expectancy is not decreased at all from

> having thyroid cancer. She said she doesn't even recommend a tt for

> malignant nodules less than 1 cm because thyca is slow growing and

> the smaller nodules are essentially harmless.

There is some medical research that demonstrates that even small tumors

can spread beyond the thyroid. Her attitude is overly confident and

unrealistic in this regard.

you also posted that you have been experiencing a host of

other symptoms - extreme fatigue, weight gain etc. Did you have

a chance to review your concerns with your endo?

Good luck.

Guelph, Canada

[Guest guest]

Hi ,

Thanks for responding to my post. My answers to your questions are as

follows:

wrote....

> You've read the posts and Dr. Ain's comments & medical references

> that this does indeed have an impact on RAI treatment. Your doctor

> did offer to do the 24 hr urine test...... What happened to make

> you back-down & agree NOT to do the urine test?>

I thought it would be pointless considering that she also said that

the lab results would not alter her treatment plan; that she still

wants to go ahead with the RAI ASAP. She said that as soon as the

patient is healed from the surgery, she likes to go forward with the

RAI. And, if testing dye has been used then she will allow for 5-6

months between that and the actual RAI treatment. She said that she

didn't mind ordering the test since she could see that it meant a

great deal to me and that if it helped to make me feel better, that

she would do it. She said it wouldn't cause any harm unless my

insurance co. wouldn't pay for the test. I guess I was thinking why

bother to do the test, if the results won't be used by her. Plus, a

part of me wanted to make her feel better and let her know that I did

trust her and that I was willing to follow her plan. There are only 3

endos in the area and I already " dismissed " my previous endo because

after the ordered the ultrasound, CT scan and ut guided biopsy, she

refused to follow up any further on my thyroid stating that she was

99.9% sure I did NOT have cancer. I couldn't live with my symptoms of

coughing, choking and having a large lump in my throat, so went to an

ENT who did the surgery and found the thyca. So, if this endo

doesn't work out, there is only 1 endo left. So, I wanted to " be a

good girl. "

wrote....

> In my experience, it is better to ask the doctor for THEIR opinion

> first. Then you can consider their comments with other comments

you've read/learned about. Starting the discussion with another

doctor's opinion usually results in confrontation instead of

communication.>

You know I didn't think of that, but you are SO right. I wasn't

thinking about how that would come across from her perspective. I

guess I was so terribly nervous and then when she started talking

about scheduling the RAI within the next 6 weeks, it surprised me

because I had in my mind that it would be in Dec or Jan. I hadn't

mentally prepared myself for it to be so soon. In fact, my head is

still in spin tonight. I just don't know how I'm going to manage

this " hypo hell " as a single mother of 2, kids out for summer, and no

extended family support. My situation is a little complicated, I know.

wrote....

> Sometimes it helps if you bring another person with you to the

> appointment to help with taking notes/asking questions.

A great suggestion, but I really don't know anyone who could or would

do this. I don't have any support system at all.

wrote...

> you also posted that you have been experiencing a host of

> other symptoms - extreme fatigue, weight gain etc. Did you have

> a chance to review your concerns with your endo?>

She said that she isn't so sure that these symptoms are coming from

my lack of thyroid. She said that a tsh at .8 shouldn't be bringing

on all those symptoms because that's not considered hypo enough to do

that. I don't know if I mentioned this or not, but I'm also a

diabetic and my blood glucose levels jumped to over 300 after surgery

and have leveled off to the 180-240 range in these past 2 months with

normal being 70-120. She thinks that it has more to do with my

diabetes not being under control. She added Glynase to my Glucophage

1,000 mg; but has referred me on to a GI doc because she was greatly

concerned about my Liver Functions (ALT, AST and Alkaline Phos) which

have been on a steady increase for the past 5 years. She said they

are too high for her to prescribe the medication she wants to, which

would bring my diabetes under control. There was also protein in my

urine today and she is ordering further tests for kidney functions as

well. She was shocked to learn that my previous my previous endo had

never checked for protein and had never done a neurological tests to

check for nerve damage in my feet. So, that's another reason why I'm

glad I switched endos. She also couldn't understand why my previous

endo had continued checking my Liver functions each year and could

see that they were steadily increasing and did not refer me on to a

GI specialist to locate the cause. I told her that my old endo just

said it was from all the meds I take and said she was not concerned.

So now in the midst of going hypo, I have to see this GI doc and try

to get my diabetes under better control. My appt with him is in my

5th week of being hypo, I'm thinking that I should reschedule; what

do you think?

Sorry to run so long, but my case is a little more complicated by my

diabetes, etc.

Thanks for your concern and for remembering about my other symptoms.

--Chris

tt 4/9/01; papillary w/ foll var 3.8 cm; starting on Cytomel

tomorrow.

[Guest guest]

> My personal opinion is that your endo sounds like she is right on

the mark.>

Thanks, Alyssa, that's good to hear.

Alyssa wrote....

> BTW my doc says 6 weeks is long enough to wait so he had me do a

hypo> scan 6 weeks after my CT with contrast and it didn't work. He

is going to have me wait 6 months and do another. I am kind of mad

about having had to go hypo for that scan but I still do feel good

about the care I'm getting.>

Could you explain a little more about what you mean by your scan " not

working? " Does this mean that you didn't enough uptake in your neck?

I would be mad too about going hypo for nothing and having to wait 6

months.

> I admire that you were able to be open with your doctor and say

what you were thinking and stay relatively calm about it even if the

doctor didn't stay very calm. Sounds like it worked out really well.

Thanks, Alyssa for your kind words.

Kind regards,

--Chris

tt 4/9/01; papillary w. follicular var 3.8 cm; Cytomel 25 mg and

going hypo for RAI

[Guest guest]

,

I noticed you mentioned your BS were running in the

180-240 range. TOO HIGH! Have you checked for

ketones? Ketoacidosis will certainly cause some of

the symptoms you've described. My daughter is 20

years old and has had type I diabetes since she was 22

months old. She begins to spill ketones around 160

and displays MANY of the same symptoms! Even though

I'm not in the medical profession, I'd tend to agree

with your doctor that your symptoms are more likely

due to your diabetes than your thyca.

Christy

> She said that a tsh at .8

> shouldn't be bringing

> on all those symptoms because that's not considered

> hypo enough to do

> that. I don't know if I mentioned this or not, but

> I'm also a

> diabetic and my blood glucose levels jumped to over

> 300 after surgery

> and have leveled off to the 180-240 range in these

> past 2 months with

> normal being 70-120. She thinks that it has more to

> do with my

> diabetes not being under control.

=====

Christy

Las Vegas, NV

01/18/01 suspicious FNA; 2/26/01 LL; 3/10/01 TT (2.5 cm follicular and .9 cm

papillary); 3/28/01 145 mCi RAI; 4/7/01 first scan no mets w/uptake found

__________________________________________________

[Guest guest]

,

I noticed you mentioned your BS were running in the

180-240 range. TOO HIGH! Have you checked for

ketones? Ketoacidosis will certainly cause some of

the symptoms you've described. My daughter is 20

years old and has had type I diabetes since she was 22

months old. She begins to spill ketones around 160

and displays MANY of the same symptoms! Even though

I'm not in the medical profession, I'd tend to agree

with your doctor that your symptoms are more likely

due to your diabetes than your thyca.

Christy

> She said that a tsh at .8

> shouldn't be bringing

> on all those symptoms because that's not considered

> hypo enough to do

> that. I don't know if I mentioned this or not, but

> I'm also a

> diabetic and my blood glucose levels jumped to over

> 300 after surgery

> and have leveled off to the 180-240 range in these

> past 2 months with

> normal being 70-120. She thinks that it has more to

> do with my

> diabetes not being under control.

=====

Christy

Las Vegas, NV

01/18/01 suspicious FNA; 2/26/01 LL; 3/10/01 TT (2.5 cm follicular and .9 cm

papillary); 3/28/01 145 mCi RAI; 4/7/01 first scan no mets w/uptake found

__________________________________________________

[Guest guest]

,

I noticed you mentioned your BS were running in the

180-240 range. TOO HIGH! Have you checked for

ketones? Ketoacidosis will certainly cause some of

the symptoms you've described. My daughter is 20

years old and has had type I diabetes since she was 22

months old. She begins to spill ketones around 160

and displays MANY of the same symptoms! Even though

I'm not in the medical profession, I'd tend to agree

with your doctor that your symptoms are more likely

due to your diabetes than your thyca.

Christy

> She said that a tsh at .8

> shouldn't be bringing

> on all those symptoms because that's not considered

> hypo enough to do

> that. I don't know if I mentioned this or not, but

> I'm also a

> diabetic and my blood glucose levels jumped to over

> 300 after surgery

> and have leveled off to the 180-240 range in these

> past 2 months with

> normal being 70-120. She thinks that it has more to

> do with my

> diabetes not being under control.

=====

Christy

Las Vegas, NV

01/18/01 suspicious FNA; 2/26/01 LL; 3/10/01 TT (2.5 cm follicular and .9 cm

papillary); 3/28/01 145 mCi RAI; 4/7/01 first scan no mets w/uptake found

__________________________________________________

[Guest guest]

Seeing as you have all of these other health issues; real

concerns with the diabetes, etc. and having to go to the GI

specialist; unless you are at great risk by delaying your RAI, I

have found in the past that just being truthful with my doctors

by giving him/her a call back and saying what you have said

below to us in this post, she most likely would be understanding

and let you wait until your children are back in school. That

will put you closer to your desire to wait a tad longer and the

other stressors will be lessened, as well. I wish you the best

whatever you decide.

--- christine_stier@... wrote:

I guess I was so terribly nervous and then when she started

talking about scheduling the RAI within the next 6 weeks, it

surprised me because I had in my mind that it would be in Dec or

Jan. I hadn't mentally prepared myself for it to be so soon. In

fact, my head is still in spin tonight. I just don't know how

I'm going to manage this " hypo hell " as a single mother of 2,

kids out for summer, and no extended family support.......I

don't have any support system at all.

--Chris

tt 4/9/01; papillary w/ foll var 3.8 cm; starting on Cytomel

tomorrow.

=====

from NE Ohio

3/25/65 tt Papillary thyca w/lymph node mets

Hypoparathyroidism 3 days post radical tt

3/25/82 Recurrence in neck & R chest

Tx w/ 176 mCi RAI 131

hx kidney stones

No scan- 5/22/01 after TSH 38.2 & Tg <0.9 & TgAb <2.0

__________________________________________________

[Guest guest]

Seeing as you have all of these other health issues; real

concerns with the diabetes, etc. and having to go to the GI

specialist; unless you are at great risk by delaying your RAI, I

have found in the past that just being truthful with my doctors

by giving him/her a call back and saying what you have said

below to us in this post, she most likely would be understanding

and let you wait until your children are back in school. That

will put you closer to your desire to wait a tad longer and the

other stressors will be lessened, as well. I wish you the best

whatever you decide.

--- christine_stier@... wrote:

I guess I was so terribly nervous and then when she started

talking about scheduling the RAI within the next 6 weeks, it

surprised me because I had in my mind that it would be in Dec or

Jan. I hadn't mentally prepared myself for it to be so soon. In

fact, my head is still in spin tonight. I just don't know how

I'm going to manage this " hypo hell " as a single mother of 2,

kids out for summer, and no extended family support.......I

don't have any support system at all.

--Chris

tt 4/9/01; papillary w/ foll var 3.8 cm; starting on Cytomel

tomorrow.

=====

from NE Ohio

3/25/65 tt Papillary thyca w/lymph node mets

Hypoparathyroidism 3 days post radical tt

3/25/82 Recurrence in neck & R chest

Tx w/ 176 mCi RAI 131

hx kidney stones

No scan- 5/22/01 after TSH 38.2 & Tg <0.9 & TgAb <2.0

__________________________________________________