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Old 09-14-2007, 07:11 AM   #1
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Lori123 HB User
a little nervous, but ready to get it all done

Hi,
I am ready for the next step in my little journey. I stopped the Cytomel on Thurs. and started my LID. I am mostly concerned about being so "hypo", but I'll get through it just like everyone else. Just don't want to miss all my kids' games, etc. We'll see...hopefully it won't be too bad. Evidently, a few weeks ago when they set up my endo appt. after my surgery, the nurse told my husband that I won't be having any scans before the actual RA-I. I thought they had to, to know the right dose, and how much tissue, etc. is left... Is this inaccurate info, sounds to me like everyone on here has one....does anyone know? Also, I am concerned because I am allergic to iodine....that doesn't sound too good, either!! In the past when I needed a cat scan with dye, they gave me steroids first. It really kinda bothers me that I don't have any of my questions or concerns answered NOW versus on Oct. 3, when I see the endo, it makes more sense to me to make an appt. for a patient SOON after surgery to answer their questions and concerns versus 6 weeks later....esp. if you are going to be "hypo". Whatever. I'll just have to wait. The nurse told me to write down my questions and bring them on Oct. 3. Wish me well, the next step is in process, and I CAN'T WAIT to be done with it all!!
Take care,
Lori

 
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Old 09-14-2007, 11:08 AM   #2
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ChristineVA HB UserChristineVA HB UserChristineVA HB User
Re: a little nervous, but ready to get it all done

Hi there Lori.

I never had any "prescans" either prior to my RAI therapy. Most endos/nuclear physicians use a set amount of RAI based on your pathology and what type of surgery you've had. The smaller the remnant and more aggressive the pathology, the higher the dose they will use. The average RAI dose given, I'd say, is anywhere between 100-150 mci. Some docs will go as high as 200 on the first try but I don't see that so much.

You can certainly tell them about the iodine allergy but it won't matter in this case. What is in the capsule is not like iodine used in a CAT scan (which is a contrast material). This is like the iodine used in iodized-salt and that is pretty much what is in the capsule--iodized "material" or sodium that has had a radioactive molecule piggybacked onto it. If you can eat iodized salt, you can take an RAI pill. Did you have ANY kind of thyroid scanning prior to diagnosis? Many people will have an I-123 scan to determine if a nodule is hot or cold--this is the same stuff used for an ablation but not as strong.

Let me know if you have anymore questions, I'll try to check back here now and again!

 
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Old 09-15-2007, 06:14 PM   #3
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Re: a little nervous, but ready to get it all done

You're getting closer and closer to the end!

Each place has a different protocol---my place did pre-and post scans, but others don't.

Make sure to take that list with you, so you don't forget anything!

 
Old 09-17-2007, 11:20 AM   #4
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Re: a little nervous, but ready to get it all done

Quote:
Originally Posted by ChristineVA View Post
Hi there Lori.

I never had any "prescans" either prior to my RAI therapy. Most endos/nuclear physicians use a set amount of RAI based on your pathology and what type of surgery you've had. The smaller the remnant and more aggressive the pathology, the higher the dose they will use. The average RAI dose given, I'd say, is anywhere between 100-150 mci. Some docs will go as high as 200 on the first try but I don't see that so much.

You can certainly tell them about the iodine allergy but it won't matter in this case. What is in the capsule is not like iodine used in a CAT scan (which is a contrast material). This is like the iodine used in iodized-salt and that is pretty much what is in the capsule--iodized "material" or sodium that has had a radioactive molecule piggybacked onto it. If you can eat iodized salt, you can take an RAI pill. Did you have ANY kind of thyroid scanning prior to diagnosis? Many people will have an I-123 scan to determine if a nodule is hot or cold--this is the same stuff used for an ablation but not as strong.

Let me know if you have anymore questions, I'll try to check back here now and again!

Hi Christine,
Thanks for your reply. No, I did not have any scans at all. Went in for a FNA due to growth of my nodule, and then it came back papillary, so I just had it out. That makes me feel better about the iodine....good...I was a little nervous. Been off my Cytomel since Wed. and feeling ok still...hope it continues.
Thanks again,
Lori

 
Old 09-17-2007, 11:25 AM   #5
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Re: a little nervous, but ready to get it all done

Quote:
Originally Posted by Reece View Post
You're getting closer and closer to the end!

Each place has a different protocol---my place did pre-and post scans, but others don't.

Make sure to take that list with you, so you don't forget anything!
Hi Reece,
You would think that it would be the same protocol everywhere? From reading on here, though, it sounds like the surgeon always leaves in some thyroid tissue anyways, but it would be nice to know if they see any more cancer....but they told me it was "encapsulated" so I will go with that. The surgeon also DID NOT do a frozen section, he saw no reason to, again....I thought that was "protocol". I will just keep plugging along, keeping a positive attitude, and doing well!! You are so helpful, thanks again!! I will remember my list, too.
Lori

 
Old 09-17-2007, 12:24 PM   #6
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ChristineVA HB UserChristineVA HB UserChristineVA HB User
Re: a little nervous, but ready to get it all done

Quote:
Originally Posted by Lori123 View Post
Hi Reece,
You would think that it would be the same protocol everywhere? From reading on here, though, it sounds like the surgeon always leaves in some thyroid tissue anyways, but it would be nice to know if they see any more cancer....but they told me it was "encapsulated" so I will go with that. The surgeon also DID NOT do a frozen section, he saw no reason to, again....I thought that was "protocol". I will just keep plugging along, keeping a positive attitude, and doing well!! You are so helpful, thanks again!! I will remember my list, too.
Lori

No need to do a frozen section if your FNA came back with papillary. Knowing what they knew when they went in, the just would have removed the gland and sent off for the full pathology.

I had a frozen section because it was unknown if I cancer or not. My frozen section came back as benign and I was sewn up. The full pathology revealed thyroid cancer and I had to go back in for a completion thyroidectomy.

You will find that all thyroid cancer specialists pretty much follow a similar protocol but they all have small variations in how something is done. To me, it sounds like your doctors are doing all the right things.

 
Old 09-18-2007, 12:04 PM   #7
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Lori123 HB User
Re: a little nervous, but ready to get it all done

Quote:
Originally Posted by ChristineVA View Post
No need to do a frozen section if your FNA came back with papillary. Knowing what they knew when they went in, the just would have removed the gland and sent off for the full pathology.

I had a frozen section because it was unknown if I cancer or not. My frozen section came back as benign and I was sewn up. The full pathology revealed thyroid cancer and I had to go back in for a completion thyroidectomy.

You will find that all thyroid cancer specialists pretty much follow a similar protocol but they all have small variations in how something is done. To me, it sounds like your doctors are doing all the right things.
Hi Christine,
Now, that makes perfect sense!! I did not know that. You have really cleared some things up for me and I sincerely appreciate it!!!
Thanks,
Lori

 
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