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What are effects of radioactive iodine treatment?

Posts: 12
Joined: Jun 2010

My doctor discovered a thyroid nodule in my left thyroid seven years ago. He did a sonogram and a fine needle aspiration. The FNA was inconclusive, so they repeated it. Again, inconclusive. My doctor advised me to repeat the process in a year. I did what he advised. I have had sonograms every six months and FNA once a year since then. The results have been benign. This May, the FNA showed atypical cells and growth of the nodule. Also, a nodule was discovered in my right thyroid.

My doctor advised surgery, still telling me that he did not think it was cancer, but that it would probably be cancer within two years. Since both thyroids had nodules, he advised a total thyroidectomy.

I had this surgery June 3, 2010, and I received the pathology reports last week. It was papillary cancer, stage 1. I was told that the tumor was only 4mm and totally contained within the thyroid. I was referred to an oncologist who did a chest xray and checked my thyroidglobulin. The lung x-ray was clear. Yea! The thyroidglobulin was 20.2, and the doctor said they like it to be less than 2. He said this means that some tissue was left from the surgery, and now I should have radioactive iodine treatment.

This journey has gone from "nothing to worry about" to "if you had to have cancer and you got to pick your cancer, this is the best one to have". What??? Where does this go from here? Can someone tell me the effects of the treatment?

Posts: 507
Joined: Apr 2010

for more detaled information i would recomend http://www.thyca.org/

one thing the doctors probaly didnt mention is that there is ALWAYS tisue left over when they do the Total thyroidectomy. there are so many other glands and other important things in your neck that if they tried to get 100% of it out they would damage vocal cords, parathyroids, lymph nodes and alot of other things.

from thyca.org ...

Radioactive Iodine Treatment - Side Effects

Sore Throat/Hoarseness: Salivary glands affected by RAI treatment may become swollen. See the section above for more information on this topic.
Vomiting: Notify the nurse immediately; do not attempt to clean up vomit; please leave clean-up to the radiation safety office/nuclear medicine department.
Headache: Tylenol plain available for headache
Constipation/Diarrhea: May be either constipaiion or diarrhea. Must have a bowel movement once a day while in hospital. If no bowel movement then ask the nurse for laxative ordered (should ask for laxative if no bowel movement for that day)
Fatigue: Resting is good. If necessary, sedation is available at bedtime if there is trouble falling asleep.
Signs to Watch for in Case of Drug Reaction (Allergy)

Shortness of breath

for myself i have had and still have a sore throat
i wake up most mornings with an extremly dry mouth
i have sore swolen salavary gland now and then
i still am building energy up from everything.


also i got the comment "if you had to have cancer and you got to pick your cancer, this is the best one to have" enough times i asked them if they wanted a transplant of my thyroid tissue.

ok from here lets see let me cut and paste from my blog. lots of cuting and pasteing to remove excess data

early Dec 2009 found large node in neck

Jan 2010 did Fine needle aspiration (inconclusive)
Since it was making it hard to breath they decided to operate to remove my right side thyroid this happened on Feb 22 2010. The surgery went well and the next day I was released from the hospital to recover.

On March 2nd I was told I had several small foci of papillary carcinoma in the tissue of the right thyroid that was removed and that the entire mass was being sent to another hospital for further research but it looks benign the doctors recommended a complete thyroidectomy that was completed on Mar 09 2010. the initial screening showed no cancer on that side once removed.

The Surgery on Mar 09 was another good surgery but do to low calcium and magnesium levels (parathyroid(s) where not fully functioning) I was kept in the hospital for 2 days.

On April 19th I started on the low iodine diet and stopped taking Cytomel in preparation for Radioactive Iodine treatment

On April 20th I was informed that the results from Armed Forces institute of Pathology Washington DC and the summary was that the large mass of follicular cells were also cancer.

follicular carcinoma minimally invasive (7.1 cm)
and 6mm papillary carcinoma w/ adjacent 2-3mm papillary carcinoma another section 6mm papillary carcinoma and right parathyroid lymph node with thyroid carcinoma 8mm.

I was also informed when they removed my thyroid there was a parathyroid gland in each of the thyroid sections removed (so I have 2 of 4 parathyroid glands removed as well)this is probably why I had minor problems with calcium and magnesium levels.

3rd of May 2010 scan of my body for radiation followed by my first uptake dose of radiation (RI-131 UPTAKE) 8.1 uCi of I-131 t1/2= 8 days.

4th of May 2010 radiation count on my thyroid followed by my second uptake dose of radiation (RI-123 UPTAKE) 2.8 mCi I-123 t1/2= 13.2 hours

May 5th 2010 was the big day they did a multitude of CT scans (multiple scans over a 3 hour period) followed by a long conversation with the doctors about what they were going to give me. After getting checked into the radiation isolation, they brought me my dose of radiation 175 mCi of I-131 t1/2= 8 days. I was hospitalized and bored out of my skull till Friday May 7th when they released me (I had to get to less than 7mr/hour at 1 meter)

On May 14th I went back for follow-up CT scans. This was a process of 1 10 min neck scan followed by a 40 min full body scan and then a follow-up 10 min scan for an area that wasn’t clear on the first scan (guess I moved too much)but I was informed by the tech unofficially that the scans looked clean.

Didnt get a offical looks clean till mid june.

hope this helps

Posts: 12
Joined: Jun 2010

Thank you so much for sharing with me. I went to the website you recommended, and it does have a lot of information. You're right; the doctor did not mention that there is tissue left most of the time.

I hope you are doing great! Thanks again for the information!

Posts: 507
Joined: Apr 2010

yes i am doing fairly well.. still recovering from eveything and building my strength back up and such

glad the info helped... my doctors seemed supprised at how knoledgable i was on the topic when i asked them questions

the best help i can recomend is to make sure you keep a notepad or such with you at all times if you think of a question to ask the doctors write it down.. make a list of the questions and review the online info and hopefully that will give you enough knoledge to talk to the doctors and get better answers

Posts: 4
Joined: Jun 2015

This comment even it's from 2010 it's the best one so far. coz  give us  Thyroid cancer patients the information we look everywhere and we can't find it.

it's an human sharing the experience and what really happens, not just doctors based on others patients and comments.

Doctors don't tell us what is going to happen after the surgery.

I had a Total thyroidectomy and lymph nodes removed at the same time and now after the first week i start to experience lot's of different symptoms

and i'm having a hard time to deal with it.

 it's the best and the most complete information i found till now.

thank you for sharing.

If you still around, God Bless you :)

Posts: 3
Joined: Jun 2010

I was dosed last fall with 101 mCi of I-131 following a total thyroidectomy. The radiation pill (called an 'ablation dose') is unimposing and easy to ingest with a bit of water.

I noticed few ill effects for several hours after taking it, but then experienced waves of nausea for roughly the next three days. I didn't vomit, luckily, but sure felt like I needed to.

My salivary glands felt fine until day two, when I woke up early in the morning to an aching sensation in my mouth just behind my bottom teeth and on both the left and right sides. One to follow medical protocol, I started sucking on hard sour candies several times an hour. It seems silly, but it works. It works well. Lemon drops, Lifesavers, etc. Just remember to only eat candies without the dyes listed in the THYCA cookbook guidelines.

After three or four days, I still felt occasional waves of nausea, but this quickly dissipated at a positive daily rate as my kidneys eliminated the radioactive iodine.

Toward your annoyance with the comment 'this is the best cancer to have,' I completely agree that it's a frustrating thing to hear. But upon extensive anecdotal review of what people with other types of cancer must generally endure in comparison to our go at it, this tired platitude does ring true. Thyroid cancer is the only type with a treatment akin to a magic bullet. Nobody's lucky to have cancer. Cancer sucks. But if we have to fight it, at least we have the cancer that can most easily be beaten.

Posts: 3
Joined: Jun 2010


Posts: 156
Joined: Mar 2010

I had a mild headache and nausea pretty much every morning. Ginger ale and Ibuprofen helped. I had no salivary glad issues, but I have found that I keep having problems with cold sores coming back since my surgery and RAI. I was tired (right before I restarted on my synthroid I was sleeping 14 hours a day). I had muscle aches and pains. But after I restarted the synthroid I was feeling so much better! Think that most of my symptoms were due to being hypo and not from the RAI

Posts: 18
Joined: May 2015

Very good meds on market now - ask your internest.  They all work great and first developed in 1985

Posts: 4
Joined: Jun 2015


Posts: 1
Joined: Jul 2016

Two months post total thyroidectomy and then RAI and I developed a metallic taste in my mouth.  This is now accompanied by daily nausea and headache. Neither of these last 24/7 but come and go. My Levothytoxine dose was just raised from 100 to 150 and I was just starting g to feel somewhat human again and now this. Has anyone else experienced these side effects and if so what is the outcome? 


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