Radioactive I-131 for Hot Thyroid Nodules

tansy · ‎01-02-2011

I am curious if anyone has had this treatment for hyperthyroidism. I have an appointment to discuss it this Friday. I do not have thyroid cancer.

Anyone gain weight? Increase in appetite? Problems with synthroid? Issues during the 3-5 days of isolation?

phoenixbrd · ‎03-27-2010

@tansy Lots of controversy...please do a lot of research and ask a lot of questions. Remember it is your body and YOU are in charge. Interesting article "l131 Dangerous Misinformation"....best of luck and take very good care of yourself.

onlyshopsonline · ‎03-09-2010

I had the treatment 12 years ago. I was told it was a strong dose, but it still didn't shut down my thyroid completely.

I spent 12 years feeling HORRIBLE and never being able to get my meds adjusted properly. Gained 60+ pounds during this adventure. I now also have early T2 Diabetes. And have been through physical therapy several times because of muscle weakness.

I also lost quite a few years because I was peri-menopausal and then early post-menopausal during this time. They kept saying my numbers were fine, and that the symptoms I was having were related to menopause. NOT!

Learn how to read your own thyroid numbers. There's lots of information online. Most doctors only go by TSH, which is not reliable. While adjusting thyroid meds, you need to go by how your are feeling.

Synthorid works well for a lot of people. It works well for my daughter. But, a great number of us can't convert the T4 in Synthroid to the T3 that our body needs. So, we need to add T3.

I spent several years trying to use some of the Natural Dessicated Thyroid products, but they were too powerful for me as my thyroid still had function.

Last summer, we added Cytomel to my Synthroid. It was gradually adjusted. By December I wasn't feeling perfect, but feeling better mentally and physically than I had in years. THEN, in February I was diagnosed with thyroid cancer, and hyperparathyroidism. Pretty sure the RAI caused the parathyorid tumor to develop.

I had a total thyroidectomy in May. Right now, I'm feeling worse, week by week. My Synthroid/Cytomel combination stopped working, even with increases. I switched to Armour Thyroid 4 days ago. Not sure how it's working. I still am sleeping all day long.

As it turned out, the endo that i saw 12 years ago didn't test me for Hashimoto's autoimmune disease....which she should have. If I had known what was going to happen down the road, I'm not sure I would have had the RAI. May have just opted to have the thyroid removed all together.

My story is much more complicated than this, but I've summed it up pretty well.

The 3-5 days of isolation was the easiest part of this life-changing disease. I did have a thyroid hormone dump a day or so after the RAI and became fairly anxious and hostile. Took a while for that to settle down.

There is so much good information online. Do a lot of research! Good luck!

"I've been here since October 2006. Wow!"

chrystaltree · ‎05-10-2010

I had it about 6 or 7 years ago and answers are no, no and no. I take Levothyroxine and after tinkering to get the right dose, I haven't had any problems at all. I barely remember my 3 day isolation period, so obviously it was not a big deal. The big thing was that I was told to stay away from babies during that time and pets that were under 25lbs. We sent the cat to my sister's house.

CLEM · ‎03-09-2010

@tansy I have had these kind of radioactive treatments about 8 times in the past. First off, let me tell you there is nothing to the isolation anymore. If you live alone, you can just stay home. A friend of mine who had small children at the time of her treatment just went to the shore for a few days.

When I had the first few treatments back in the 1980s it was more involved. I was rushed to my prepared room which looked like something from outer space. Everything I could possibly touch was covered in plastic wrap. My food was left outside the door and I had to get it. Everything was on disposable paper plates which I then put into a trash bag after I was done. The only one brave enough was the nuclear radiation specialist who visited me. I was locked up for a week. It was very peaceful and I was able to read. The last one I had in 2001, I was able to stay home.

Good luck with your treatment.

I forgot to mention that the last time when I stayed home, I discovered QVC and my shopping habbits changed forever.

tansy · ‎01-02-2011

@CLEM, I was told today that my case will probably require two treatments about six months apart, which I wasn't expecting. If it's not too personal, why did you need to have it done eight times?

Trudey · ‎03-11-2010

I was diagnosed with Grave's Disease when I was in my 20's. I drank the radioactive liquid and was told to flush the toilet twice after using it and to stay away from children for 3 days. I went to work as usual...no problems. I was prescribed Synthroid and it took 3 years to get my dosage right. I had good days and bad days...mostly extremely tired. Once my dosage was correct, I felt so much better. I have always battled my weight, so I really couldn't tell any difference with that.

I really wish I had gotten a second opinion before killing my thyroid. Perhaps, my issues could have been treated with medication and I wouldn't be dependent on Synthroid for the rest of my life. It's been 25+ years and I'm healthy. Good luck to you and I highly recommend getting a second opinion before proceeding.

tansy · ‎01-02-2011

@Trudey wrote:
I was diagnosed with Grave's Disease when I was in my 20's. I drank the radioactive liquid and was told to flush the toilet twice after using it and to stay away from children for 3 days. I went to work as usual...no problems. I was prescribed Synthroid and it took 3 years to get my dosage right. I had good days and bad days...mostly extremely tired. Once my dosage was correct, I felt so much better. I have always battled my weight, so I really couldn't tell any difference with that.

I really wish I had gotten a second opinion before killing my thyroid. Perhaps, my issues could have been treated with medication and I wouldn't be dependent on Synthroid for the rest of my life. It's been 25+ years and I'm healthy. Good luck to you and I highly recommend getting a second opinion before proceeding.

I appreciate your response, @Trudey. This actually is a second opinion. I refused the treatment two years ago. One way or another, I'd be on a med for this and the methimazole I'm on now has some bad side effects.

For 3-4 days, I'm to sleep on my own, do my laundry and dishes separately, not fix food for others, private bathroom with the flushing twice rule, staying 2-3 feet away from people and animals, and not be around small children or pregnant women for a bit longer.

CLEM · ‎03-09-2010

@tansy That's a convoluted story but here it is. I went for surgery because I felt like being strangled. I had a nodule on my neck, but nobody wanted to do surgery because it was considered "cosmetic". The tests back then did not show anything. Finally got someone to listen and was told "okay but it will be cosmetic". Well, they found a growth as big as a grapefruit, tested it and found it was cancer (don't remember the name for it) but they decided to remove the thyroid, but leave the parathyroid in. This was supposed to be the thing to do. So there was a lot of tissue left which needed to be neutralized. Each time this happened, I was taken off synthroid for a couple of weeks, then the treatment, then had to wait a few weeks before I was being able to start taking the synthroid again. Then six months later back I went for another treatment.

So, eventually I put my foot down, changed doctors and hospitals. This went okay for about 12 years. But with each scan, they told me that there is still some thyroid tissue left and that I needed another treatment. They would no longer give me a prescription for synthroid unless I underwent the treatment. So, I had another one which did not eliminate the tissue at which time they decided that I needed surgery. I never went back to the endocrinologist because I decided that if I was old enough and I didn't mind to live only an additional 20 years instead of 25, I still have lived a very long life.

From then on my primary physician has been prescribing the synthroid. Life definitely has been better without all the ups and downs with mood swings and gaining weight.

Fortunately, the kind of surgery I had has been deemed too controversial and is no longer performed.

You will be just fine and two treatments seem to be the norm from what I have heard.

P.S.: I am now nearly 78 and haven't noticed any problems.