Radioactive Iodine Treatment-Hyperthyroidism ?

[disneyfanforever]

Hi everyone, my doctor has diagnosed me with hyperthyroidism (more specifically Graves disease). I was put on methimazole but ended up having an allergic reaction (hives, itching, joint pain). Now, I am supposed to meet with him Monday about having radioactive iodine treatment. I would love opinions and experiences with this treatment.

I know in another thread I had a few weeks ago some people have had this treatment, and I would love to know more. Was there any pain? Was it safe? How long do I need to stay away from my kids? What are the after effects?

I am very nervous about this, and any advice would be appreciated. Thanks!

 

[DizBelle]

I don't know about humans but two of my cats had radioactive iodine treatment for hyperthyroidism. It was super easy. It's been fantastic for them. It basically destroys the overactive cells. There is no follow up treatment or medication at all.

I would say that the only issue is staying away from people until you are no longer radioactive. It wasn't more than a couple of days for my cats.

 

[EMom]

I don't know about humans but two of my cats had radioactive iodine treatment for hyperthyroidism. It was super easy. It's been fantastic for them. It basically destroys the overactive cells. There is no follow up treatment or medication at all.

I would say that the only issue is staying away from people until you are no longer radioactive. It wasn't more than a couple of days for my cats.

Geez, that's what I was going to say. Both of my cats needed it when they hit about 14-15. Cost around $2,000. I'll bet yours will cost more......But then again, you probably have insurance. The cats never missed a beat, but HATED being away from home and kept isolated for a few days. That was the worst of it for them.

 

[LuvOrlando]

I think you are radioactive for about 2 weeks. The levels taper off over time but, for a little while at least, you will need to be something like 20 feet away from other people and pets. But this isn't the hardest part, from what I understand the hardest part is that you need to be on a iodine limited diet for 2 weeks before the treatment can even begin and the diet is very hard to follow.


Check out Johns Hopkins for Thyroid Radioactive Therapy.

 

[scrapquitler]

I don't know about humans but two of my cats had radioactive iodine treatment for hyperthyroidism. It was super easy. It's been fantastic for them. It basically destroys the overactive cells. There is no follow up treatment or medication at all.

I would say that the only issue is staying away from people until you are no longer radioactive. It wasn't more than a couple of days for my cats.

I was going to say the same exact thing. My cat had it (it cost about $1700) and once he had it done he had no thyroid issues anymore. After he had it he needed periodic bloodwork to monitor his thyroid levels (every 6 months), but that was no big deal. It was certainly better than giving him daily medication.

I assume that the treatment for humans is basically the same thing.

 

[dis-happy]

My mom went through this and it was not big deal. Swallow the pill, stay away from people for a short time (even your urine is radioactive!) and eventually your thyroid dies off completely. The hardest part was regulating hte synthroid level, but even that has become pretty standard for her now. A couple times of year she has to go in for a blood check.

If my mom is any indication, you'll definitely feel much better when all is said and done!

 

[akcire]

Hi everyone, my doctor has diagnosed me with hyperthyroidism (more specifically Graves disease). I was put on methimazole but ended up having an allergic reaction (hives, itching, joint pain). Now, I am supposed to meet with him Monday about having radioactive iodine treatment. I would love opinions and experiences with this treatment.

I know in another thread I had a few weeks ago some people have had this treatment, and I would love to know more. Was there any pain? Was it safe? How long do I need to stay away from my kids? What are the after effects?

I am very nervous about this, and any advice would be appreciated. Thanks!

Okay here is my story, and I am NOT a cat.

I was diagnosed with Thyroid cancer. After they surgically removed my thyroid I had to have radioactive Iodine. Once I swallowed the "glowing green" pill at the hospital, I basically put myself in quarantine for 48 hours. (The hospital will decide if you can go home immediately, like I did; or if you need to stay in the hospital. It really depends on your home life--ie kids ages.) After those 48 hours I could be around people, but for 2 weeks they asked me to limit my touching--also if sitting at a table with someone sit far away.

For 6 months I carried a card, in the event I encountered a geiger counter.

Now for the bad part. I was horribly ill for a week following the pill swallow. I had a non standard reaction, but I could not keep down any food for a week.

You will need to find some lemon candy to suck on. I found some organic candy at Wholefoods that tasted the best to me. Other than the week of being sick, I am fine.

Also don't get pregnant for at least 6 months following the treatment.

Feel free to send me a PM if you have other questions.

 

[apirateslifeforme]

My mother had this done for her Graves Disease. They asked her if there were any pregnant women or young children in the house, then told her to stay away from them for at least a week, preferably 2. She had no effects whatsoever from it.

I had a little fun at her expense, telling her on the first night that she was glowing...

 

[mrsv98]

Hi everyone, my doctor has diagnosed me with hyperthyroidism (more specifically Graves disease). I was put on methimazole but ended up having an allergic reaction (hives, itching, joint pain). Now, I am supposed to meet with him Monday about having radioactive iodine treatment. I would love opinions and experiences with this treatment.

I know in another thread I had a few weeks ago some people have had this treatment, and I would love to know more. Was there any pain? Was it safe? How long do I need to stay away from my kids? What are the after effects?

I am very nervous about this, and any advice would be appreciated. Thanks!

I had this treatment in my 20s. It is totally painless, though a little freaky in that once you take the pill, they read you with a Geiger counter!
The good thing about radioactive iodine is that is has a short half-life. For the first three days you need to stay away from people, use paper plates, plastic utensils, you get the idea. Radioactive iodine is dispersed through the sweat glands so you have to be careful about touching walls, wiping down toilets, etc.

Once you are past the three days, you can start being around people for increasingly longer amounts of time. They will give you a chart showing how much exposure you are allowed. When you get past two weeks you are pretty much home free.

As for side effects, I did lose a lot of hair and was tired for a while. That had as much to do with the wildly fluctuating thyroid levels as the iodine. I had goiters on my thyroid and in that I was lucky. The radioactive iodine destroyed those and not my actual thyroid so I have never needed synthroid. If you do need to take synthroid, know that it can take a few months to get it right so be patient, you will feel better!

Any more questions, just ask!

 

[tikilyn]

I had/have Graves Disease. My doctor let me choose what I wanted radioactive pill or total thyroidectomy. Basicly with the radioactive pill I would have to confine myself in my bedroom for a week after taking the pill. There was no way for me to do that with my husbands work schedule with the kids. Plus in my mind (which at the time was a little wacked LOL) there was no way I was putting radioactive anything in my body. My thinking was if it wasn't safe for anyone to be around me, why on earth would I be willing to take it and put it in my body. See wacky thinking for sure.

So I went with a total Thyroidectomy and it was so easy (for me). I'm on synthroid and my levels are mostly ok, but some days are worse than others.

 

[disneyfanforever]

Thanks everyone for the replies. It completely scares me to put something radioactive in my body, and I definitely don't want to harm my kids.

My thinking was that I would stay at my sister's for a week after taking the pill (she doesn't have kids and lives down the street). Do you think that would be long enough to live apart from the kids? I would then come back home but try not to touch or hug them alot and use separate bathrooms for the next week. After two weeks, I have heard I am back to normal as far as being radioactive. Does that sound correct?

 

[luvmarypoppins]

I had it done for thyroid cancer last year.

I think my rad. onc. is a little extra precautious with the rules. But my ds are young adults so they knew to stay away from me and my dh has worked with rad. in his job in the past so he knew about everything etc.

Some other things:

If you use a computer, tv remote etc, that is going to be shared with your sis you should use rubber gloves.

I was told NO disposable plates etc. Wash everything yourself seperately in 1 sink not mixed with other peoples stuff.

No touching food/food prep etc.

NO pets. Its something with their hair etc.

NO going barefoot on floor, carpet etc.

3 foot lmit for the week.

I would try jolly ranchers instead of the lemon drops if they get too much

Do you have to go on the Low Iodine diet? Did they tell you what the dosage amount of rai will be? Mine was 200mci. That is a pretty high dose.

Wishing you all the best.

 

[Christine]

I had it done for thyroid cancer also. For thyroid cancer dosages, the amount of radioactive iodine is MUCH higher than a hyperthyroid patient would get. Much.

Since your thyroid gland is so hyper, the RAI does a fantastic job and destroying it. Your thyroid is so "avid" for iodine that it will just suck it up and burn up in a blaze of glory.

I've heard that most hyperthyroid patients, because the gland is so active, do get some discomfort in the thyroid area but it is nothing that an OTC pain reliever can't take care of.

Because you will get under 30 mci (they never give more to a hyper patient), you will not have a hospital stay, although you will be shedding radioactivity. At your dosage rate, you just need to keep 6 feet away from people for a few days.

 

[disneyfanforever]

Thanks for the info. My doctor hasn't told me what my dosage will be, but I will ask him at my appointment on Monday.

lunmarypoppins, how long did you follow the precautions you listed? Is one week enough?

Thanks again everyone for giving me your experiences and advice. It is hard to know what to do. Looking things up on the internet is really scaring me.

 

[akcire]

Looking things up on the internet is really scaring me.

When I got my cancer my husband banned me from looking up anything related to thyroid or cancer on the internet. I was becoming a nut job and focusing on all these people who had horrible outcomes.


Seriously it all worked out fine.

 

[lovepurple]

I had this done and isolated myself in my bedroom for 3 days. DH would bring me food and drinks on paper plates and cups. My youngest son would sit outside the door to talk to me. That made me a little sad. But the procedure itself was very simple. I went into radiology, the nurse gave me the pill to swallow and I went home. The most frustrating part was getting my medication regulated after the fact, but now I am at stable levels and feel great.

 

[disneyfanforever]

lovepurple, do you know if your dose was very high? I would like to be able to stay at my house in my bedroom but I keep reading conflicting advice. How old was your son when you had the treatment?

I really do need to quit researching things on the internet. There is just too much out there that will drive me crazy.

 

[lovepurple]

I believe I had a fairly high dose. The cause of my hyperthyroidism was a toxic multinodular goiter. My son was 4. And don't read too much on the internet. It can cause unnecessary worry.

 

[kateydid]

here's my experience. i have/had grave's disease, went through years of unsuccessful treatment with medication (ptu and tapazole) and this past december finally had the RAI therapy.

best. decision. ever.

seriously. i put it off for years, partly because i was in college and was worried about it affecting my studies and also i was also freaked out by the procedure itself. i wish i had done it sooner.

you will receive a MUCH lower dose than anyone with thyroid cancer. i was given 12mci. i had it done on a friday afternoon, spent the weekend in our basement (it's finished!), and was free to return to most of my normal activities on monday. before the pill i had to go off my thyroid meds for a week (and the week after) and avoid high iodine foods for 3 days prior (i think my only restrictions were no cabbage, spinach, and seaweed?) the excess radiation not absorbed by the thyroid is eliminated through body fluids. i was told to drink lots and lots of water, use one bathroom, and flush twice. i did this for a few days then cleaned the bathroom thoroughly. i ate on regular plates and silverware, just no sharing for a week. i avoided contact with anyone for the weekend and then limited prolonged closeness with anyone for a week. i live at home with my parents and teenage siblings so honestly the hardest part was keeping the dog away. i'm a nanny so i was out of work for 3 weeks (would have only been 2 if one of the kids wasn't a baby). i was told not to get pregnant for anywhere from 6 months-2 years (diff. doctors).

i had no immediate side effects. however, i spent most of the winter sick (i caught everything the kids bought home from school) and had a sore throat that would NOT get better. the doctor thinks the RAI may have done some temporary damage to my throat/vocal cords and made me particularly susceptible to sore throats/losing my voice. i've been fine since. as i expected, the worst part of the whole procedure has been regulating my synthroid levels. i went back on antithyroid meds a week after the RAI, went off of them for good a month or two later, then on synthroid 3.5 months later. it took a few months to get my thyroid levels back to normal (mine swing from one extreme to another very quickly so i was significantly hypothyroid before i started the synthroid.

i finally feel like myself again. it's like i've been living in a haze the past 6 years. my liver function was really starting to suffer from the anti-thyroid meds so my choices were RAI or thyroidectomy. as much as the idea of RAI freaked me out i would not for a minute have chosen surgery over it.

OP, you will be fine. it sounds like you have a really great situation with your sister living right down the street. i think staying at her place for at least a few days would be a great idea and then after to just limit your proximity to your kids and use a separate bathroom. best of luck to you. if you have ANY questions feel free to PM me

 

[april5675]

I have had the treatment 3 times(cancer) and stayed in hopsital all 3 times. I had kids at home and did not want to harm them. I think the main thing is to not be hugging them or doing any thing that would cause your neck to be close to them. Although the RAI is all over your body it is mostly in your thyroid area because your thyroid has soaked up the majority. I had no physical contact with my children for about a week all 3 times. The treatment it self is easy because you just swallow a pill. The first time I was fine. The second time they upped my dose and I did not feel well and the 3rd time I got really sick, but it's because the dosage was so high due to the spreading to lymph nodes. The hardest part is not having contact with the kids!