Radioactive Iodine (RI-131) for hyperthyroid

Hi, I’ve had my j-pouch for 22 years now. 12 years ago I was diagnosed with thyroid cancer and had surgery to remove it and radioactive iodine therapy to kill any remaining cells. No affect whatsoever on my pouch. Feel free to ask me any questions. 

Good luck,

c-jay

I was diagnosed with papillary thyroid cancer in May of 2015.  I had surgery in July of 2015 - a complete thyroidectomy with two lymph nodes removed (pathology determined it to be stage 3 cancer due to the metastasis).  Then, after healing from the surgery, I went on a very low iodine diet (which is horrible BTW) for 3 weeks.  This was followed by 157 millicuries of radioactive iodine, administered in liquid form due to my IBD.  I was in self-isolation with no contact from humans for 1 week or so until my radioactivity went down.  All of my treatment was done at Yale/Smilow Cancer Center.

The radiation had no effect on my Pouch, and no effect on my body.  They gave me a prescription for anti-nausea pills just in case but I never had to use them, other than pre-emptively the day of the procedure.

I had a scan done and was later determined to be cancer free.  I have blood tests done every 6 months to monitor my TSH and tumor markers.  All testing has come back good.  I take 175 mg synthroid which covers me.

Good luck.  The worst part of the whole thyroid cancer experience, for me, was the iodine free diet, because you cannot really eat anything that you normally would.

In 1975 I had the radioactive iodine treatment for an overactive thyroid.  I've been taking thyroid medication since and have my thyroid levels checked every 6 months.  Even though I received my J-pouch much later, there has been no reaction to having a non-functioning thyroid.  As long as I keep my thyroid levels normal, I notice absolutely no symptoms.

CJB, CTBarrister and CeeCEe, thank you so much for sharing your circumstances. It's great to hear that there is a normal life with a functioning j-pouch after radioactive iodine. Right now I'm on hold. The anti-thyroid med has moved my thyroid back into the normal range, so we're going to see if it goes into remission.  There's also the possibility of taking a maintenance dose of 2.5 mg. of methimazole to keep it in check, which current research indicates can be successful. It's great to know that should I need RI, it will not be a huge deal. Best of wishes to each of you!!

Rose

Rose-

All the information I collected suggested that side effects from RI are variable depending on the individual but usually nausea, which as I said can be counteracted with Zofran.

Regarding the cancer risk of RI, one thing I should mention regarding the statement you made in the original post is that the area of the greatest cancer risk when you get RI is in fact the salivary glands. The radiation in the iodine is sucked up by thyroid cells of course which is the reason for the using iodine, but it heavily concentrates in the salivary glands. For this reason I was told rather sternly to suck sour candy continuously for 48 hours after RI ingestion. I never thought I would get sick of Jolly Ranchers but I did.

I did have one question: why not do a thyroidectomy rather than RI??????? I have heard of RI being done on noncancer patients with hyperactive thyroids but isn’t a partial or complete thyroidectomy always  an option? Either way you will be taking synthroid for life if the thyroid ceases functioning. With surgery I have a small scar on my neck which isn’t at all noticeable. The surgical pain was minimal. I was out of the hospital the next day, they just kept me overnight to monitor vitals. 

CTB, surgery is what I initially wanted. One endocrinologist agreed bec. it would immediately eliminate the hyperthyroid without the side effects of RI-131. Her partner said surgery is rarely done for hyperthyroid unless cancer is involved, which is not my case. She's pushing RI. With surgery there are risks: anesthesia, possible nicking of vocal cords or voice box and that area is very rich in blood vessels which have to be worked around. They just don't like to operate if an alternative is available. One of my friends had surgery for thyroid nodules and the surgeon did nick a vocal cord, causing her to be permanently hoarse, which is exhausting.

I did read about how the salivary glands take up the RI-131 and the need to suck on sour lemon drops etc. to stimulate them to release the RI. 

If I were to choose surgery, I'd definitely find a surgeon who has done tons of these operations, possibly at UC San Francisco where there is a thyroid pro MD. I live in San Francisco (don't hold this against me--it's quite a mess) so this is a possibility. 

Am hoping that I go into remission again so I could avoid both RI and surgery. Thank you once again for your additional info. If I do end up with surgery, at least I know it involves only minor pain and it's a quick recovery. 

Rose

Rose,

You are correct about those surgical risks, although none of them came home to roost on me. However, vocal cord damage is a risk with radiation as well, moreso traditional radiation than RI. One of my colleagues at work sustained this damage. He is permanently hoarse and can no longer do trials. He developed the same throat/neck cancer that the actor Michael Douglas developed. It’s a cancer caused by a sexually transmitted virus called HPV which most sexually active adults have in their body, or close to 50% of us anyway. Cancers caused by Viruses that are sexually transmitted are more treatable and his treatment of his tumor was radiation and chemo. It’s known as “7 weeks of hell.” Now that radiation is intensely focused on the neck and may be more intense than RI but I believe RI could possibly impinge vocal cord function as well. It is certainly a threat to the salivary glands. When you go for the whole body scan after RI your whole neck area is lit up like a Christmas tree! That’s what they expect to see. They don’t want to see lights elsewhere in your body because that means a metastasized tumor. I had to sweat that baby out because I was a stage 3 cancer and it got into my lymph nodes.

So I had both the complete thyroidectomy surgery and RI and escaped with no side effects and none to my voice like my colleague. Although his voice has gotten better. Right after the treatment he could only speak to me in a muffled whisper. Now it’s like a full hoarse voice. He sounds like a chronic smoker though he never lit a cigarette in his life. He and I are both cancer free years after our treatments.

J Pouch surgery was much, much tougher deal than the cancer surgery and RI were for me.

Anyway best of luck to you and if any doubts exist get second opinions on it. It’s too bad you aren’t in CT because we have the best Thyroid people in the country. My endocrinologist Phil Goldberg is the best in CT and an expert on RI and treating thyroid cancer which is the only cancer treated exclusively by endocrinologists and not oncologists. I will ask him the question about surgery vs. RI for hyperthyroid patients. 

Thank you for your added info. Health stuff can be so tricky and there's lots to consider. You were certainly fortunate to have such an expert on your team. Your  thyroid episode must have given you some worrisome days. Am glad it's behind you and wish you the very best. We're all fortunate that you are so willing to share your experiences and knowledge.

Rose

Thanks Rose. It’s been 3.5 years now since I went through that. When my surgeon informed me that the biopsy on the thyroid came back positive for papillary thyroid cancer I was in shock. I never had any issues with my Thyroid although my mother and sister, like you, are hyperthyroid. All of this was detected due to my primary care doctor doing a routine annual exam and feeling swelling in my throat glands. Otherwise I would never have known.

I was very lucky with a good team of experts- Dr. Joseph Quaranta, PCP, who did the exam that discovered the throat swelling; Dr. Thomas Takoudes, ENT specialist and surgeon; Dr. Lynwood Hammers, radiologist who does ultrasounds with needle aspiration biopsy to detect cancer; and finally Dr. Philip Goldberg, endocrinologist specializing in RI and treatment of thyroid cancer. All 4 of these gentlemen work out of Yale and are true professionals. When I discussed the radiological findings with Dr. Hammers he said to me, “the bad news is you have cancer. The good news is it looks very treatable and you live in absolutely the best place in the world to get thyroid cancer because of the people we have at Yale which are some of the best in the world.” He was right. It was the most professional treatment experience I could have imagined. I am very lucky and very grateful to these doctors and their staffs for the care they gave me. I did buy 3 dozen cupcakes for Dr. Q and his staff. I recommend all of them to anyone living in CT.

One thing I should add which is kind of funny. I am a glass half empty kind of guy so when I got the initial diagnosis and that I was stage 3 I assumed the worst. I formed a bucket list of things to do before I died and spent the summer of 2015 executing on that list. After the shock of having cancer melted away I felt strangely peaceful and serene. And ready to die if that was in the cards. I did a number of trips and vacations that summer, met old friends, and lived life as fast and full as I could. 3.5 years later I am still here and healthy and feel very fortunate.

Do not wait for something like this to happen. As Ferris Buehler famously said, “Life moves pretty fast. If you don’t stop and look around once in a while, you could miss it.”

CTB,

You've presented the perfect argument in favor of annual physicals. 

The glass half empty approach probably goes with being a lawyer. You deal in reality & facts and you're not prone to simply assuming the rosiest outcome. 

Having a disease such as U.C. and, as in your case, having cancer, is nasty, but it also brings with it a depth of feeling and understanding for others and a most definite appreciation of life's transience. The marvels of life, from the resilience of the human body to the complexity of the most simple flower, constantly amaze. 

I, too, was gifted with an amazing primary who was also a G.I. specialist. I jokingly told him I had an altar of worship for him at my house. He graduated from med school at 18 and was a true prodigy, yet so unassuming and kind. When he retired a couple of years ago, I felt like I lost my father. It's taken till now to choose another primary. I don't know if doctors realize what an integral part of our lives they are. The three dozen cupcakes was a nice touch!!

Rose