RAI side effects

[lam348]

Hello I just joined this forum and just had a total thyroidectomy for cancer.Can anyone tell me the side effects they felt when they did RAI? I now I will be hospitalized for 3 days and no one is allowed to see me but how will I feel with the RAI? Will I feel tired and sick? Will I be nauseated? Please if anyone can answer these questions. Thank You Lisa

[amela321]

Nausea is not common with RAI, but it has been reported.  It's usually short lived. Other side effects can include salivary gland damage and tear duct damage.  These are usually only found with higher doses or multiple treatments.  Check out www.thyca.org for a more comprehensive explanation of RAI and possible side effects.

Take care,

Amy
Papillary Thyroid Cancer
TT and RAI 1985
RAI 1986
Central compartment neck dissection and RAI 2008

[4michellesv]

I thought I was going crazy - literally -before I found out I had cancer and then got treatment. I was up and down emotionally. I would have incredible rages that were unlike me. I felt physically off and spacy. It was not until I had my thyroid out and got my system in balance with thyroid meds that I realized how much the thyroid affects someone.
I actually pulled up alot of information about the thyroid maybe causing the symptoms of bi-polar disorder.

Physically I felt a mess and not understanding anything that was going on with me physcially. It is shocking to know how arrogant and unknowledgable some Dr's can be in their own areas of expertiese. .

I was also confused about the littlest things and my memory was diminished.

[4michellesv]

I would suggest you get the total thyroidectomy. I say this because from what I understand it is easier to balance your thyroid with medication after. Ask that they try their best not to remove the parathyroid.

The RAI (Radioactive Iodine) was a breeze.  I had no problems with it. Pappilary thyroid cancer is one of the most curable cancers. The cure rate is huge.

[lam348]

This is the only option that my endocrinologist gave me. I had papillary carcinoma in the right side and 1mm on the left side. They removed it all but they told me I had to get 3 days of RAI and a full body scan in order to make sure the cancer has not traveled. Im only 35 and never image I would have cancer. I was treated with levoxly to see it it would shrink the nodule down but it didn't so the next step was to remove the thyroid. Im scared because im in the nursing program and CANCER is a scary word, but I just hope God will take everything away and that the full body scan shows nothing.

[Grammy7]

I, too have just been diagnosed with thyroid cancer (papillary).  I am told I will have either a to have a total or partial thyroidectomy but I don't know what RAI is.  I am told they inject me with radioisotopes to see if there is spread of cancer, but that it is NOT chemotherapy.  Am I wrong?  Also, I am interested in knowing if anyone else has had any of my symptoms that I've had for two years.  Joint pain, swelling all over, rashes, generalized pain and aching (like the flu), difficulty with vision changes, changes in my mood.  One minute crying, next laughing.  I fall asleep sitting up in a doctor's office but cannot sleep at night.  The doctor's all tell me that is not related to my thyroid cancer, but my PCP tells me that all cancers have the potential to produce neuropeptides, which are hormones that influence everything in your body from weight to mood.   I'd be interested in hearing from those of you who have been diagnosed prior to me.  Thanks you.  Also, what, may I ask, have you decided to do for treatment of your own cancer?

[bluestarmom187]

I can not answer your inquire because I have decided not to go that treatment route but I just wanted to say that my thoughts and prayers are with you and your family. I would like to know about your experience if you feel that you would also like to talk about it. I also have thyroid cancer. Hang in there...