Side effects of radioactive iodine 131 - please respond ASAP: scared...

[keene63]

My father died of anaplastic Ca ten years ago. I had a partial thyroidectomy 11 years ago b/c of hot nodules; then the other lobe about 6 years ago b/c the other lobe had failed and there were abnormalities with a parathyroid. All (2) sisters have had to have their thyroid out. Brother refuses to be tested...follow up ultrasounds for me were normal until 3 weeks ago. Now, new mass is there. Endocrine says it has to be removed - regardless of it is new thyroid tissue, or Ca (biopsy in 3 days). It will be followed by radioactive iodine 131 - when is that typically done, immediately after surgery or later?. What side effects has anyone experienced? I am scared. Previous history of follicular Ca...

[kglow]

Does anyone know if RAI causes other cancers in the body and if so, where did you get your info.

[keene63]

THANK you so much for ALL of the personal information you shared with me, and the other readers of this site, about your experience with RIA. Your courage, fear, pain, and recovery are all very evident. Throught your journey you have educated others about the need to be checked and monitored. It was really difficult for me to pick a "Best Answer," but when I came back to what my original question stated, I had to pick the individual I did. However, I wanted to personally thank you for all that you wrote. Your story is so close to mine...the genetics, etc. I thank ALL of you who answered my query, and for your deep concern and encouragement. What a wonderful forum this is for individuals with thyroid issues.......I hope my experience will go well and turn out as well as many of yours. You have all given my more optimism, hope and "been there" experience which is so priceless........many, many thanks.........
keene63

[MANmom]

My cancer was Papillary Carcinoma, I had five tumors, four micros under 2 mm and one big one that was 1.5 cm.  I had to wait 7 weeks for my RAI dose, I thought I was going to die.  My TSH three days prior was 186.  The day after my RAI dose, I could take synthroid, after 20 minutes I had this huge adreneline-like rush, then I felt better.  It took many months to get to the right dose.  My family has a history of thyroid issues, too.  My dad had Hashi's, so do two of my six brothers.  My sister found her cancer just after I found mine because I insisted she be checked.  My other sister has nodules and is being watched.  Now that my family knows, they are all being dilligent and keeping an eye on their necks.

[keene63]

Dear MANmom:
Thank you for your important additional information. May I ask what kind of thydoid cancer you had, and was your RAI done IMMEDIATELY after surgery, or did they wait?
I am so thrilled to hear that you are CURED! WAY TO GO! It's also so refreshing to hear that your treatment was really prettty side effect free. Thanks for the response....
Wishing you all the best........

[MANmom]

I had 100 mlc of RAI in July of last year, mostly it was nothing.  I did lose my taste for about a month, nothing else really.  I sucked on sour candy to keep the saliva glands going, drank lots of water, and it was really no big deal.  A year later, my TG test is undetectable, my cancer is gone, and after four more years, I can be consedered cured.  It is really a piece of cake, at least for me.

[keene63]

I want to thank both of you SO MUCH for your important, detailed medical information and your compassion and UNDERSTANDING........what a wonderful site to have "stumbled" upon.....How wonderful to know that there are so many caring people still around.
With most sincere thanks and gratitude,
Keene63

[Barb135]

I've never had thyroid cancer and I'm not familiar with RAI, so I'm sorry to say, I can't help you there.

I do sense your fear, though, and I want to let you know that someone who is familiar with these things should be along to answer your questions.

In the meantime, please try to relax (I know, easier said than done) and know that we all care for you.  (hugs)