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Mary Shomon

Radioactive Iodine (RAI) Treatment for Thyroid Disease: Is Secondhand Exposure Safe?

By November 19, 2007

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Each year, doctors offer an estimated 28,000 people radioactive iodine (RAI) treatment for thyroid cancer. In the past, patients receiving higher doses of RAI were hospitalized and isolated, to avoid exposing family and friends to excessive radiation. But in early 1997, the Nuclear Regulatory Commission ruled that many patients receiving higher doses of RAI no longer required isolation and hospitalization. USA Today recently conducted a survey of more than 900 thyroid cancer patients, and found that more than half of them were given RAI and sent home.

Are thyroid cancer patients unnecessarily exposing family and friends to the health risks of radiation? Is secondhand exposure to I-131 safe, or risky? Is it safe to release patients treated with I-131, or should they be isolated to prevent exposing others to radioactivity?

USA Today looks at these questions, and the safety of radioactive iodine treatments used for thyroid cancer in the article "It kills thyroid cancer, but is radiation safe?"

The article is one in a multi-part series, which also includes these three articles:

Photo: clipart.com
Comments
November 19, 2007 at 8:25 pm
(1) chekechu says:

I had 2 RAI treatments for Graves’Disease. The first was in 1998, the 2nd in 2002. My son, 6 at the first treatment, and 10 at the second is now 16 and suffering from subclinical hypo. He has no antibodies; so it is unlikely to be Hashimotos. Our 7 year old dog was a pup during the second treatment. He is sluggish and slow–very atypical for a terrier. I’m taking him for testing this week. Obviously, cancer is a huge worry, but no one mentions the possibility of thyroid damage leading to hypothyroidism.

November 20, 2007 at 2:08 pm
(2) Susan T says:

I often wonder about the exposure my family and pets had after my RAI treatment. I had a relatively low dose for Graves’ disease, but did find it scary when I took an adventure to my father’s chem lab and the geiger counter there began making noise. That was proof to me there was some exposure going on to those around me.

November 24, 2007 at 1:11 am
(3) GrandmaK says:

I had RAI 29 years ago for Graves Disease. I do not know the dose only know that the Dr. told me not to hold my 9 month old son for very long for a few days. I have had a few health issues since then and wonder if it could be the RAI. They didn’t know much about the long term side effects back then.

March 25, 2011 at 2:59 pm
(4) dina says:

what kinds of symptoms has RAI brought you??? i also had it in 1998 and have a alot of heath probs since.

August 7, 2011 at 10:57 pm
(5) Mary says:

i had RAI in 2006 and 2007 and have been suffering from an extensive array of health issues.

fibromayalgia, osteo-arthristis, asthma, and what might be chrons disease…

i’ve been wondering if anyone else has had problems since treatment and found this site and you.

November 24, 2007 at 5:57 pm
(6) Judy says:

I had thyroid cancer 30 years ago, when I was 25. I drank the RAI that was brought to me in a lead container.
Now it is a pill. When I was scanned I was sent to the other side of the hospital because the machine could not be calibrated as my radioactivity would interfere. Flush the tiolet twice, keep kids/pets away, no kissing, as it could ‘destroy their thyroid tissue.’
My treatment was every three months, on and off my medication for over two years.

I was in nursing school then, devasted. Now 2007 I have been an ICU nurse for almost 30 years on Armour Thyroid.

Thank you for your story.

November 24, 2007 at 8:41 pm
(7) Noreen says:

I had RAI in 1993 for Graves Disease and NO ONE ever said ANYTHING about keeping away from family members. They just sent me home and said come back in 6 months for a blood test. Within two months I crashed, something else NO ONE had told me could happen – in fact, I had no idea what was wrong with me, I only called the endrocrinologist as a last resort to see if I was having possible side effects. It took another 3 years to get me on an effective dose of medicine. Both my daughters, now adults, have already had borderline thryoid issues. To think this is more than ‘genetics’ and actually may be because they were exposed to radioactivity by me upsets me greatly. But how to prove it?

November 25, 2007 at 7:13 am
(8) linda says:

I had radioactive iodine & was sent home after having it done back in the 1990′s. Now my thryoid issues are just as bad as before. Have the weight gain & very big puffy eyes. What can I do to find out if the iodine has affected by body as well as my family?

May 30, 2008 at 3:07 pm
(9) Bex says:

Same old song: I had RAI for Graves around 1996, when my son was 3. I was only told not to hold him close to my neck for a few days! Now he’s 15 and I’m starting to wonder if he might be subclinical hypo. He’s having a physical this afternoon, so I will raise both issues (excess radiation and possible hypothyroid) with his doctor. I see the same GP and he just switched me to Armour at my request, so maybe he will also be more amenable to testing/treating the youngun.

My heart breaks when I think of all of us that have been undertreated, and now I come to find out our families have been downright endangered!! Sometimes I don’t think the world is big enough to hold all the anger I have for the so-called “medical community.”

May God bless you all and bring you relief and health (because I don’t think your doctors will!!)

November 16, 2008 at 11:31 am
(10) Phyllis says:

Here is a good one for you. Back in the early 90′s I was treated for a active thyroid and when the tech was out just being a nosey patient I happen to lean over and saw the x-rays. My Thyroid was not enlarged as was stated to receive the Idoine Treatment but was small and I wonder then why was I suject to the Radio Active Idoine! The Tech gave no answer and said that surgery for removal of the Thyroid was schedule I did not go back and of course I did not get a second dinostic at that time but I did know that something was not right. Here I am today with a shattered heart and a Thyroid that is so sluggish that my TSH is 38. The standard medication doesn’t even work! At 46 I tried to lose weight which use to be so easy. I can go two week and not lose a single ounce on the best so call eating plan! I have cut out all pork and sea food, eat salads and fried food once a week, take fiber tablets, even drink water like a thirsty child. I did get the treatment and was told (at Christmas Time) to stay away from my children, family and to keep my head wrap. My third child would you believe is suffering from Hypo she is only 28. It really makes you anger to know that this is still going on and you really do not know who to blame. Therefore, talking about a person that prays all the time. Oh yes, I want to get better for I love being out but I get so tried and my skin is so dry I wonder WHY! Looking Forward To A Better Day.

December 16, 2008 at 7:30 pm
(11) Wendy says:

Connie, my heart and prayers go out to you. You saved my life when I was sick, and I wish I could help you! Have you tried going to mexico for b17 and vit c IV therapy? I’ve seen many online get help over there. Also have you tried sota instruments or have you spoken to the folks at tumorx.com

April 1, 2009 at 11:54 pm
(12) Bre says:

Phillis,I am in the same boat in 97 had the raidioione but I was told to stay away from my family for three days so they left me home alone. Now I’m 44 and the weight gain has been bad. I tried every diet under the sun even not eating still no wieght loss just tired as hell.I feel so bad my husband is great dont comlpain it the weight.I have never had a weight problem before in high school track star always a size 5 now 18.The doctor says I only had the graves for a few months before treatment so I was skinny from being hyper.If anyone out there knows of a way of losing weight please help.

June 22, 2010 at 7:09 am
(13) Momma of Graves Disease Daughter says:

It is sad to hear how some doctors have been so imcompetent and put others at risk due to lack of providing information. My daughter had her first RAI in 2007 and now must have another this summer in August. Her daughter at the time was 2 years old and her doctor did tell her that she needed to NOT be in the presence of her daughter or anyone with any immune system issue for 3 or 5 days, can’t remember which one. so she went and stayed with her Grandmother and her daughter stayed at home with me. I read something about sucking lemon drops, thats the only thing her doctor didnt tell us, so now i know to buy lemons or lemon drops to keep the sa;ivary glands going. The last time her glands did the opposite and worked overtime, she had problems for a little while with drooling.

January 21, 2011 at 11:16 pm
(14) cady says:

Hi:
I have Graves Disease too,but I want to ask you if the RAI cause cancer? and which one is better for the Thyroid,RAI or surgery?

March 5, 2011 at 8:30 am
(15) Missi says:

Hi,

I have done the surgery and RAI treatment for thyroid cancer. I had to have both and I hate it. However, I was just given a scan yesterday and they both took care of it. It has been 5 years since my surgery. Hope this is good news.

August 31, 2011 at 5:36 am
(16) Carla says:

Hi Missi,

Did you have papillary cancer? Because that’s the one I had removed in June 2011. Now, the doctors say I have to have RAI and I’m so scared of the side effects and long-term effects. Are you feeling well and healthy?

May 5, 2011 at 2:45 pm
(17) Marcela Franco says:

I was treated for Graves Disease with a relatively low dose of radioactive iodine (lower than what cancer patients receive, but high for Graves Disease). I followed instructions as best I could, but nevertheless my sister and son both experienced protruding eye(s). I can’t find any mention of this happening on the Internet, and my doctors say it ‘s not possible. They think I imagined this or the eye bulging was caused by something else. Or they think my sister may have Graves Disease, but she doesn’t. I would recommend that patients don’t do this unless they or their families can stay at another home for a week after treatment.

July 11, 2011 at 7:20 am
(18) Yolanda Pompey says:

I was diagnoise with Graves Disease in 1996 but wasn’t treated until 1997, which by then untreated my eyes were enlarge, lose a lot of weight and paranoia set in. In 1998 I was given Iodine radioactive tablet at the hospital were I was told to stay in a secluded room for 6 hours alone. When they release me the same day I was instructed not to be around family for 3 days, since I had a 5 year old he stay with family, but my hubby would not leave my side. He doesn’t seem to have any side affects but I now have a hypothyroidism and weight gain is crazy. I found out that taking Thyroid support product and/or Iodine drops with potassium help me to lose 60 pounds. Now I’ve put 30 back on so quick so exercise daily is require to keep it off. Stay encourage my fellow thyroid friends.

July 24, 2011 at 5:51 pm
(19) Dionne says:

I had RI in 2001, and wish I would’ve never had it! My doctors told me that my thyroid would not work after that, and never gave me any hope of it ever working again, so they didn’t try to give a dosage that may only destroy a small portion of it. I’ve been subclinical every since, and my life has been miserable! I’m 31, and I’m completely gray (everywhere), my joints always ache, and losing weight is so difficult. I’m not really big, but I am a lot bigger than I used to be. I have mood swings and suffer from depression. I would have much rather suffered with hyperthyroidism than this. I research the medical research that they’ve done overseas and had success with thyroid transplantation, but I always run into dead ends. I guess the U.S. depends too much on how much revenue Synthroid, etc. brings in than to do the research over here. I wish I would have gotten more opinions before doin the RI. I was 21, didn’t know any better, and the doctors explained it as if Synthroid was some sort of miracle pill that would make me feel wonderful.

November 13, 2011 at 1:24 pm
(20) Dolan says:

I had radioiodine treatment twice around the ages of14 and 16 to handle sever graves.

I am now 29 and though my general health and t3 an t4 levels are now okay due to synthroid I am experiencing a number of very strange symptoms that may be thyroid related such as constant muscle motion in my left hand and arm when ate rest, as well as problems with tendons in my legs. Also of note is since getting the treatment I have developed well over 300 moles on my body.

Has anyone else experienced this or even heard of it being related to this treatment.

April 19, 2012 at 11:17 am
(21) Maria says:

I just had the RAIU test done, April 2012, and they came to the conclusions I have Graves Disease. I wanted to do surgery and just have the thyroid removed, but I was told in this day and age, they dont really do that anymore. So I was informed, I would need to do the radioactive iodine treatment. The doc informed me I would have about a 5% chance of needing more than one dosage, but that in his time of practice, he has never had to do 3. He also said that if it were one of his family members, he would recommend this treatment as well. I went ahead and did it this way, but I’m a little nervous of exposing my boyfriend and our dogs to some of the radiation. I was told the major ways it comes out of the body is through saliva and urine, so basically just flush the toilet 3 times after using the restroom, and no kissing, sharing utencils when eating, that sort of thing, and to sleep alone for 3 days. I live in an apartment, and am not currently working due to my health, so I’m worried about my dogs being around me during the day…can this be dangerous for them?

April 28, 2012 at 7:40 pm
(22) Nicole says:

HI ,

My name is Nicole I will be 44 in August. I was just diagnosis with Graves disease, My doctor gave me the option of radioactive Iodine or surgery. I’m really not liking what I have been researching about the radioactie iodine so I’m thinking I should just do the surgery. But I am so confused and trying to figure out what would be the best in the long run for me and my family. I guess my question is for all of you that did the radioactive iodine if you had to do it all over again would you or would you do the surgery?

Thank You in advance for all you comments … Nicole

June 9, 2012 at 12:04 am
(23) Isa says:

I just had RAI I 131 4 days ago for Graves (diagnosed about 4 months ago and extremely hypertyrohide symptoms. Have not had any side effects that are major other than weird pain like feeling to my throat and my ears, and I feel like something is crackling, not painful at all. Extremely thirsty and stomach issues, but really not bad. I stayed alone for 3 1/2 days and just returned back in the house.
The first 24 hrs, my Iphone would go crazy everytime I touched it and then stopped right after, not sure if related to it. I was only told by Neuclar Dr thag distance and time are what drive possible risk, so stay at least 6 feet away from people and no more than 1 minute for 3 to 4 days, risk is thru urine, sweat and tears. I asked about dogs and said no worries, same rule as with people. And stay away from pregnant women and children for like 9 days. Was told by Dr that the physical life of radiation is 9 days and the biological is 24 hrs. Hope this helps, but then again I just had it done, so don’t know how the long term will be but I don’t regret it, I have a great Dr. Wish you all well!

July 15, 2012 at 5:47 am
(24) Jewels says:

Anyone experience TOOTH DECAY? I’ve had Rai in 2006 & 2009. They said I can’t receive anymore in the future. I had perfectly healthy teeth until Rai. I have recurrent papillary thyroid cancer. I have also developed atrial fibrillation and have to take heart medicine. I have went from 115 to 150 and it’s mainly in my stomach area, I am 32 & just feel like i’m nothing. It doesn’t help when everyone asks how far long I am. I used be a very outgoing carefree person, and now i just stay home. The only thing that keeps me going is my 6 & 7 year old.

July 28, 2012 at 1:57 am
(25) Mary says:

I had rai 131 in December 2011, I am now experiencing severe joint pain. Anyone else have this problem and what has helped the pain. Thanks

September 2, 2012 at 12:31 pm
(26) Anne says:

My husband had the radioactive iodine for Graves disease when he was about 33 years old. At age 44 he developed sudden onset severe allergy to bread (wheat and gluten). It started with total body itching everytime he ate even a bite of bread. It advanced to the point where he can’t even make sandwiches if the bread touches his hands. We’ve been told that this is a common allergy that people who’ve had the radioactive iodine can get. It goes along with the whole auto immune disorder thing. One year after the gluten allergy, he started with total body internal tremor, and mild both hand intermittent tremor. He looks like he is aging faster than normal. Prior to the Graves disease tx , he was healthy and strong……?????

September 3, 2012 at 10:01 pm
(27) cristian says:

I have graves disease and four days ago i took the 131 iodine pill. I was wondering if it is safe to be around my 9, 7 and 3 year old. After receiving the treatment the doc sent me home but I am kind of worried after reading I could be exposing them to radiation. When is it going to be safe to be around my kids? Does anybody know? I MISS THEM SO MUCH ;(

September 3, 2012 at 10:17 pm
(28) cristian says:

I have been treated with iodine 131 like 3 days ago but I had no idea that my kids had to stay in a different home. In fact the sleep in the room next to mine. Is it too late to do something?

September 14, 2012 at 5:15 pm
(29) MegAnne says:

I was given RAI back in 1997 for Graves disease. I was told to stay 10 feet away from my children and husband for 10 days. I did so.
My children are all grown. My daughter (30) has low thyroid, and is now taking almost as much Synthroid as I do!
I am wondering if the RAI affected my daughter?
I might add that none of my forefathers had thyroid problems.

I am also wondering if there is anyone out there who has come up with such severe allergies of late consisting of rashes on skin that cannot be interpreted, except for allergies.
In the last 2 months I have developed contact dermatitis on my arms and legs, along with a terrible rash on my scalp, with sores that weep, terrible itching and burning, also rash at the back of my neck and upper back.

I have been doing some research and found there is a chance the adrenal gland could have been injured. I have read many of your stories, some of which lead me to think perhaps your adrenal gland might perhaps have been injured.

I on the other hand am suffering greatly. I have become allergic to dairy, beef, pork, soy, corn, olive, all grains, and unless I am given steroids, I cannot get rid of the rash on my scalp which is also making my hair fall out.
There is also the possibility that I have Parathyroid complications now.

I hope that you all understand that Graves disease never leaves the body, once you have it….always.

I would suggest some of you with nervous problems, sleeplessness, hair loss, have the adrenal gland checked and also your Parathyroid.

Anyone suffering with some of the symptoms I am lately, please make your voice known…as I would like so much to get to the bottom of this to find a remedy.
Work on building your immune system!
Garlic gel caps, Oil of Oregano caps, lots of green veges, lots of H20, and sleep!!!! Most important.

November 16, 2012 at 12:31 pm
(30) Leslie H. says:

I have papillary thyroid cancer. I just underwent my first treatment of RAI. This is to kill any remaining tissue left that my surgeon did not get when removing my thyroid. My Dr.s say that the time you should stay the most secluded from people is the first 72 hours. Maybe a few extra days stay away from pregnant people and babies to be safe. He just said stay in seperate bedrooms and no closer than 6 ft from someone for any more than about 2 hours at at time. Also wash linens seperately and shower 3 times daily and drink alot. He says the first three days are when we pass the iodine the most. As far as passing thyroid issues onto our children, from the RAI I think is doubtful.Thyroid issues are very very common. And unfortunately like most things out there if you have a history of issues in your family, the higher the likelyhood you may have them. I know many people who took RAI 30 years ago, and just take their daily thyroid supplement pills and have had absolutely no issues what so ever.

November 25, 2012 at 10:23 pm
(31) shelly r says:

had rai in july after total thyroidectomy in april of 2012. dr told me to stay away from family and pets for 7 days. since the treatment have had very dry skin, excessive thurst, cannot control diabetes. never had much trouble keeping it under control before treatment. used meds and diet. cannot lose any weight, just keep creeping higher and higher. insomnia, severe depression, and dry dry dry mouth……… and today lost another tooth. anyone else having these effects? help ……. i just turned 50 and i feel like i am losing the battle. my sister who is three years younger than me had the exact same cancer as i did, had her surgery in feb of this year and has a lot of the same symptoms…..

November 28, 2012 at 4:12 am
(32) concern mom says:

My son is 20 and he has graves disease. He had the rai today and now concerned of all the side affects. He was tired of suffering from depression, joint pain, mood swings, eye bulging out ect. But now reading the stories it seems like the side affects are the same or now worst!.. Can this be reversed or are there any solutions for what’s to come? The Dr. Did say no side affects..?

December 14, 2012 at 8:46 pm
(33) angie says:

hi my name is angie and not to long go i found out that i had hyper active thyroid and i really dont know which option to choose from. My doctor told me the best option will be the RAI but reading all these stories kind of scares me. I am 25 years old and a mother of two and i just want to make the right decision for the future. I pray for everyone and hope and u find a solution to your health problems may God bless you

January 7, 2013 at 7:58 pm
(34) Debra says:

OH NO!!! I had the first, small dose of radioactive iodine today. Tomorrow i will go back, they will do the scan to determine the theraputic dose and administer that. Is this the right and safe thing to do? I live with my 3 dogs and i was told it would not hurt them! What about coworkers? PLEASE HELP!!!!

January 12, 2013 at 3:12 pm
(35) Rachel says:

I’m with Angie(33) and Debra(34)^, just got diagnosed with hyperthyroid and reading all these comments have scared the crap out of me…I don’t want all the problems. I rather take my Beta Blocker and deal with the other problems… Someone, I need advice and knowledge! Please help!

February 26, 2013 at 9:25 am
(36) Joyce says:

I had my Thyroid removed in January and the RAI treatment just last friday. I was warned about staying away from family members for the first 96 hours all toghether and then at least the six feet distance for anthoher 2 days. I have a nine month old grand baby that I am missing but after reading some of the comments I will extend out the time frame before I will see her. I also have a new puppy four months old and a 3 year old both golden retreivers they have enough problems with cancer I am not taking any chances with my pets. My thoughts are better safe than sorry. Side effects so far some soreness in the neck and a metal taste even though I have not had a sense of smell for months.

April 6, 2013 at 7:20 pm
(37) Leesa says:

I had the RAI treatment yesterday. I am 24 and was diagnosed with Graves Disease about 2 months ago. So far so good? But this is only the second day. I have an eight month old who is staying with her grandmother until Friday, as I would hate to expose her. My husband is home with me but we stay in separate rooms and try to stay away from each other as much as possible, besides when he brings me food. I haven’t felt any different, but reading these stories have made me a little concerned for.what the future may hold. But as always I am leaning on Jesus. It is the only way. I hope you all find peace within the storm. God bless.

April 13, 2013 at 7:43 am
(38) lois says:

I had RAI 5 days ago now and feel fine at present. Whilst reading all the guidelines regarding safety for the rest of the family and pets, it seems to vary. My Endocrinologist and the Consultant in Nuclear Medicine both told me to sleep apart from my husband for 23 days, keep cutlery and crockery that I use separate and wash my clothes and towels separately as well. Shower at least 2-3 times daily and flush the toilet twice after use. I have to Avoid close contact with anyone but particularly pregnant women and children for 23 days. (close contact means not sitting right next to them or kissing or cuddling children, or holding them close near my neck) I just wondered why the guidelines vary so much, if the drug that is given requires caution to the recipient after it’s taken should the guidelines not all be the same for everyone who receives RAI?

April 14, 2013 at 10:45 am
(39) elizabeth says:

I have Grave’s and had the I131 Friday. I have been isolated in the becdroom since. I chose RAI due to possible SE of the pills. A person will become hypoactive even with the pills. With no treatment Grave”s will continue to cause the heart to beat too fast. The heart is a muscle and will eventuallt tire. Grave’s can also cause pain in joints and even RA. Treatment is a personal choice. My best advice to everyone is do research so you can make a choice that is right for you. God bless all.

April 18, 2013 at 6:53 pm
(40) Keith says:

I had a friend go thru RAI and the information he found here http://i131safety.com/info/ proved invaluable. He felt a lot more comfortable after using their products to clean up after himself during his isolation phase. The product is a little pricey but he felt it brought him enough piece of mind that it wouldn’t infect anyone else.

April 18, 2013 at 6:55 pm
(41) Keith says:

I had a friend go thru RAI treatment and the information he got from here
http://i131safety.com/info/ proved invaluable. The product is a little pricey but the piece of mind it gave him made it all worth it in his eyes.

April 18, 2013 at 6:56 pm
(42) Ryan says:
April 18, 2013 at 6:57 pm
(43) Keith says:
April 18, 2013 at 7:42 pm
(44) Keith says:

http://i131safety.com/info/
Great info on RAI

June 20, 2013 at 8:21 am
(45) Cara says:

I had RAI in 1997. I felt great for the first year and then I experienced major depression, anxiety. The thing is I was in danger of an immediate stroke and/or heart attack. I was down to 95 lbs at 5’4″. I couldn’t hold anything without spilling it. There wasn’t time enough to wait for anti thyroid drugs to take effect. Actually, the RAI saved my life and I was told to take certain precautions. It has been a battle with thyroid medication over the years and now I am experiencing issues again that appear to be related to the generic thyroid medication since Levoxyl was taken off the market. I am currently seeking a new doctor since I have relocated due to job, but with little success. One I just went to told me the thyroid medication has nothing to do with blood pressure or heart rate and yet, out of desperation, I stopped the generic and feel better than I have in the last three to four years. I can breathe better, my heart rate and blood pressure went down, and no joint pain and less fatigue. I do not recommend this to anyone. Everyone is different. I have no explanation for what is happening to me. I do know that I need to find a doctor quickly but I think it was the medication that was the culprit.

June 20, 2013 at 8:34 am
(46) Cara says:

In had RAI in 1997. I felt great the first year after, then I began to experience depression, anxiety, blurry vision, and major fatigue. It has been a battle with medication since. The thing is I was in danger of an immediate stroke and heart attack and there was no time to wait for anti thyroid drugs to take effect. I was down to 95 lbs with Graves eye disease as well. RAI saved my life. In April 2013, Levoyxl became unavailable so I was switched to a generic thyroid medicine and began to experience major symptoms – racing heart, breathlessness, anxiety, sleeplessness and depression. I have relocated for a job and now I am attempting to find a doctor who understands thyroid issues and medication. I went to a new doctor and she told me thyroid had nothing to do with high blood pressure or heart. Out of desperation, I quit the generic thyroid and all these symptoms disappeared within two days. I don’t recommend this to anyone, but it appears to me that the medication had everything to do with what I was experiencing. I feel better than I have in the last 4 or 5 years. I also quit the new doctor and looking for another as quickly as I can. My question is does thyroid medication affect blood pressure, pulse, breathing, etc.?

June 24, 2013 at 11:02 am
(47) lynne says:

as I was reading all your comments, Im so scared..I will undergo RAI next month..Pls.advise me what to do..im really scared of having radiation..

June 24, 2013 at 11:05 am
(48) lynne says:

as I was reading your comments, I’m so scared..I will undergo RAI next month..Pls.advise me what to do..I’m really scared of having radiation..

June 30, 2013 at 2:47 pm
(49) Marilyn Mabra says:

I had my RAI I-131 treatment in July 2010 following a total thyroidectomy for papillary cancer. In 2011 I developed extremely dry skin and a severe cough/clearing my throat form constant sinus drainage along with excess mucous.

No one told me to get any dental work need before the surgery so now I am on a fluoride gel treatment because my jaw comes unhinged (very painful) when my mouth is opened to wide. Per my surgeon this condition stems from the RAI. I’m taking synthroid 0.1mg and my endocrinologist only adjust my meds once and that seems to be fine. It appears to me most of my problems from the RAI treatment have to do with a bone areas being weak. Osteoarthritis and the bone by ear having periods of tenderness. This is now 2 years post treatment. Hope this info helps.

July 14, 2013 at 10:54 pm
(50) Heidi says:

I was diagnosed with Graves 20 yrs ago and had the RAI treatment. I question the long term effects that this has on ones all around health. I have 2 uncommon conditions now. One of them being Essential Thrombocythemia (body produces too many platelets). Wondering if RAI could have changed the blood components over time.

July 16, 2013 at 12:11 pm
(51) katesisco says:

Where does the radioactive iodine go? Down the sewer to the plant? What happens to the radioactivity that is let go into the bathtub or shower? There is no forceful flush to send it on its way–it just sits in the p trap. Does it create a blue glow that you can see at night? Is it going to be there forever?
What if this happens in a senior highrise? Will everyone who inhabits the apartment be exposed to radiation?

July 17, 2013 at 3:00 am
(52) Val . says:

I had RAI and 4 months later I was diagnosid with low grade dysplasia in stomach. I have since been informed I have intestinal metaplasia chronic inflamation in stomach and now suffer with acid reflux.

i

August 3, 2013 at 4:55 pm
(53) EP says:

I had RAI in Sept. 2009 and have had a lot of trouble getting my meds just right. I am one of those people who do not do well on T4 only meds. I just can’t convert enough to the active T3 hormone. Therefore I had to find a doctor who would prescribe medications such as Armour and Cytomel. Also, someone who is knowledgeable in balancing the medication just right. If I could go back in time I would not choose RAI. The thyroid is so very important to the body—it controls brain function, feelings such as love, your motivation, every single part of your body needs thyroid hormones to function, your energy levels, your hair, weight, body temperature, how you digest food, etc. Anything you can think of that your body can do is reliant on thyroid hormones. I had Graves’ disease that was easily controlled by anti-thyroid medication. Just two months into treatment my endo at the time overmedicated me on the anti-thyroid medication and pushed me to do RAI. My dad also suffered from Graves’ disease, but he resisted RAI treatment. He was in remission after a year, by monitoring the anti-thyroid medication given to him. There is such thing as remission and if you’re responding to anti-thyroid medication. Doctors will push for RAI to make the job easier for them. They’ll tell you your white blood cell count is low, your heart will wear out, it’s as easy as taking one pill after the treatment, you’ll have to be on medication for the rest of your life, your thyroid will fail, etc. but they will not mention that your body will slowly age and break down when not on an optimal dose, or you’ll be at risk for heart disease and diabetes, weight gain, mood swings, pcos, missing periods, lack of libido, on medication for the rest of your life also, lose your hair, or without your thyroid or thyroid medication you’re at risk of falling into a myxedema coma, get depression, lose your job due to an inability to concentrate, etc.

August 3, 2013 at 4:58 pm
(54) EP says:

Sometimes you just gotta fight for your thyroid as much as you can because you only get one, and it’s the organ that makes your body and mind strong. When you’re in a tough situation with hyperthyroidism, just remember it could be worse with hypothyroidism. Plus it’s easier to monitor your hormone levels by adjusting the anti-thyroid medication than trying to mimic the hormonal output from your thyroid when you no longer have one. Just because you see someone doing well without a thyroid doesn’t mean it’s as well as when they still had their thyroid, and you don’t really see their struggles with the condition behind the scene.

August 13, 2013 at 11:18 pm
(55) Jenn says:

Here is a different perspective for anyone reading these posts and freaking out… I had a total thyroidectomy in June and the biopsy revealed follicular thyroid cancer in one of the nodules they removed. I just had RAI and feel FINE! I felt amazing after my surgery and have total confidence in my choice for RAI and my all my doctors. I sent my 2 year old daughter and husband to my in-laws for a week and I’ve just been relaxing at home. Don’t worry about the future and things that may never happen. Focus on your health and being the best you can be for your family right now. My thyroid levels are stable and I’ve never felt better! Believe for total healing. “You can do all things through Christ who gives you strength.”

August 15, 2013 at 11:16 am
(56) Colleen says:

I to had radioactive iodine in 1996 & all the health issues that I have I wonder if…. I just asked one of the Dr.’s that I see if anyone has done a longer term study on the side effects.

August 29, 2013 at 12:22 pm
(57) Suzanna says:

I’m disgusted by the lies medical specialists and doctors spread about RAI – every one of them either telling people, “minor, temporary side effects” (and refusing to say what the side effects are, exactly) or plain lying about it by saying “no side effects and thousands of people have had it”.

Every instinct in my body told me NOT to have RAI, but the specialist actually bullied me by using my family to emotionally blackmail into it. Disgusting.

My teeth immediately began to fall out (I’ve only got 6 left just 3 years after RAI), my hair began to fall out (I didn’t have that issue even with hyperthyroidism), chronic insomnia (also not a big problem before the treatment), and oh god what it’s done to my skin! Friends said I looked like I’d aged 20 years overnight less than a week after I had it!

My eyes began to ‘bug out’, huge bags began to develop under them, together with dark circles, my lips got thinner and thinner…the list goes on. Health wise, I have more problems now with diarrhea and tremors, than ever before.

The negatives of having RAI are too numerous to mention, but I’m so glad that we’ve all been given the opportunity to tell the world via this forum, what happened to us as a result. Hopefully, others will find it and will avoid having the treatment.

September 2, 2013 at 1:45 am
(58) TG Miko says:

Dear Katesisco,
The NRC would not allow you to be dosed with something that is radioactive forever. I-131 has an 8 day half-life. For example, after 24 days you would have 12.5% of what you were given at the hospital, but your body dumps most of that. Your body fluids that are going down your toilet pipes and shower drain join all of the “regular” non-radioactive waste water (from your neighbors) and gets diluted out, dramatically. As the leftover I-131 in your body arrives at the local sewage treatment plant, it continues to decay, losing its radioactivity. By the time that water cycles back and is used to water somebody’s lawn it no longer radioactive. The neighbors in your building are safe. There is no blue glow, in your pipes, unless the North Koreans are conducting secret experiments (That’s a joke, start laughing). I am saddened by the many comments that I have read here, from patients whose doctors did a poor job communicating with them. Those doctors suck. However, a lot of the stories on this page suffer from huge flaws in their logic. Many of the submissions draw a line from A to B, when there is no connection. Many of the people posting flat-out ignore a lot of what was said to them, or asked of them. A bunch of the people who posted here admit that they have a family history of thyroid disease, then they try to blame the I-131 treatment for when their sister, others got sick. Also, a large number of the symptoms described are clearly thyroid problem symptoms, as opposed to radiation sickness symptoms. I am distressed to see on this forum that a large number of laymen are giving each other bad medical advice. If you don’t feel comfortable with your endocrinologist, tell him or her that they are not doing a good enough job explaining things, and addressing your fears. Keep pushing your doctor, but please don’t believe everything you read on the internet.

September 8, 2013 at 4:51 pm
(59) Bryan says:

I had thyroid cancer and had both the surgery and the i131 treatment. My dose was 125 milli Curries of I131. That was 2years ago. Although I may still have to do both again to get all the cancer, both the radiation and the surgery went very well. I am 30 now and have no problems from the treatments. I have not gained weight and still enjoy rock climbing and kickboxing.
Definatley take all the precautions so you don’t expose others, but so far so good for me. Best of luck to you all!

September 19, 2013 at 11:01 pm
(60) Louise says:

I was treated with the RAI and since have felt worse and worse. Never ending rashes and infections which will only clear with steroids , apparently my thyroid levels are looking good so the mood swings and change in personality must be depression. They have put me on antidepressants and upped them to the maximum dose, I am feeling worse and worse, one day I am happy and me, the next day I am miserable, can’t be around ppl and cry a lot. Have also felt really angry which I’ve never really experienced before. But also my temperature changes my weight goes up and down, so does my sleep patterns, feeling a little helpless

September 24, 2013 at 8:13 am
(61) Helen says:

I had RAI in February 2013 as I still had T3 levels of 16.5 but no TSH. I felt marvellous for 6 weeks. I went for my usual monthly bloodtest and the following day woke up sweating with tremors so called my doctor and told him to look at the blood results. My T3 levels were over 50 again. I saw the Consultant and he said sometimes the thyroid rallies and goes into overdrive and could settle down within 6 months but I had to wait and in the meantime had to go on overdose medication (the consultant called it this) of 12 propylthiouracil tablets a day with 140mg beta blockers. I did this for two months and the levels were still at 36. He said I would have to wait at least until September 2013 to see if it would settle down. I saw my GP who confirmed levels are still TS3 10 but still no TSH. I see the Consultant tomorrow. WIsh me luck!!! The last time I saw him he said he would most likely send me for RAI again and if that was not successful I would have to have the thyroid removed but said it was not the best option as I could die from haemorrhaging afterwards (cheery!) or could sustain facial nerve damage, a voice like Marge Simpson due to vocal chord disruption plus have to be on calcium tablets for life as the thyroid controls the calcium distribution in the body. HOWEVER – after reading lots of the stuff people have posted I see now he was just putting me off surgery to try medication first. I haven’t read of anyone losing someone through it yet.

September 25, 2013 at 9:46 am
(62) Helen says:

hi everyone – I had my check up with the consultant. GOOD NEWS – it is a miracle – my TSH has just made an appearance showing as 0.1. My T3 is 12 so they think I will make a full recovery and get onto normal levels within 6 months. They now tell me that RAI can take a year to have the full effect as this is what it is showing in my case. I have to reduce the PTU to 4 per day from 6 and stop the beta blockers.
I have another appointment in December but they said they will call me after my next blood test in Mid October to tell me what is happening. I am so happy I could burst!!!

October 2, 2013 at 10:02 pm
(63) Carol says:

I am 60 years old and had RI done in 2010 for hyperactive thyroid. Had no problems or issues with anything until this last year. I have always worn jewelry but it is impossible now to wear a metal necklace around my neck. It leaves my neck, just in the front not back, completely red and burning for days. It feels like i have been burned…and leaves my skin very dry. I wear earrings and rings and they do not bother me at all but I cannot touch my neck with metal of any kind. This may sound crazy but I know it has to be caused from the RI. Has anyone else had this problem?

October 2, 2013 at 10:23 pm
(64) Carolyn says:

i am 6o yrs old and had RI treatment done in 2010 for hyperthyroidism. I had no problems or issues until within this last year. I have always worn jewelry but within the last year if I wear any kind of necklace with metal in it …my neck will turn completely red….looks and feels like I have been burned ….and for days very painful and uncomfortable. It only does this in the front of my neck….not inthe back or sides. I can wear earrings and rings …they do not bother me at all. I know this sounds crazy but I know it has to be caused from the RI. Has anyone else had this happen to them?

October 20, 2013 at 11:37 pm
(65) suzie says:

Carol it’s probably an allergic reaction, usually to nickel in the metal necklace and nothing to do with your treatment. I get this all the time. It can even happen sometimes when you’ve been wearing a piece of jewellery for a long time with no reaction then suddenly your skin flares up because the coating on the metal has worn away and now the allergen is touching your skin. It’s probably not happening on your earrings or rings because they are made from better metals (gold or silver) or still have a coating on them. You’ll probably have to stop wearing that necklace and try to only wear silver or gold jewellery or paint your necklace with a bit of clear nail varnish to protect your skin

November 8, 2013 at 4:47 pm
(66) rac says:

Hi. I had rai on june 2012. All i can say is that you avoid it if you have the choice. One year after fatigue brain fog, low libido …,
For doctors, it’s just a simple treatement.

November 19, 2013 at 7:17 pm
(67) Judy says:

I had RAI and it was the worst decision of my life. I was told it has no side effects as compared to having to undergo surgery. I have had every side effect imagineable ending up with thyroid eye disease, with the muscles behind my eyes swelling so badly I had to have radiotherapy on my eyes, lost the sight in my right eye, which has now returned but has been affected by the radiotherapy, and using cortisone drops when they become problematic, and it affecting the muscles in my legs, so much so, that I can’t even walk the way I used to due to pain in my calves and down the front of my legs. The iodine oozed out through the pores in my hands such that I had to use gloves the day I was given the RAI.
Think long and hard before using this treatment. If I had known all the possible side effects I would have had surgery. This is not a short term thing. I am left with these for the rest of my life and am left with auto immune disease which has left me open to many other possible neurological disorders later on in life.

December 18, 2013 at 6:25 pm
(68) Pam says:

I had thyroid cancer. I just had to take the radioactive pill.
i have a 12 year old cat that i have to be cautious around her. what harm if any can harm her?

January 13, 2014 at 12:58 am
(69) Kimberly says:

I just want to say I my heart bleeds for myself and all of the other patients who had to endure this ridiculous therapy. I find now that what was causing the problems is the GMO’s in Corn, wheat and soy. I have went on a completely natural diet and it was hard at first but i feel better than I have in years and I am only 38. I had my thyroid therapy I131 back in 2002. I was in my early 20′s and didn’t have good health insurance. I did not want the I131 but my doctor said they don’t do surgery anymore. I was so disheartend by this. I was informed of the immediate side effects and spent 5 days in a motel room and had all of my food delivered. For the next 2 weeks I barely held my children and stayed away from everyone. I am happy at least I could do that. It sucks that they make you think this is your only options. I hope all of those doctors die of exposure and are miserable.

January 30, 2014 at 2:55 pm
(70) LuAnn says:

I had RAI done in 1989 for Graves disease. All I can say is I’m so thankful for the treatment. I’ve done great for 25 years! And I’m thankful for the treatment, because my grandmother died at 33 in 1929 from what I’m sure was probably the same thing. My dad (who was 5 at the time) says all he remembers was that she had a goiter and they put her in the hospital. They didn’t know what to do and she died, leaving a 2, 5 and 7 year old. So, to me, it’s totally worth any risk!! I’m sure my grandma wishes she had been given the chance to live.

February 21, 2014 at 10:21 am
(71) Mel says:

How long should you stay away from someone who is receiving this radiation therapy? I heard 3 weeks.
But after 3 weeks, how do you know it is out of their bodies for sure? I am worried because I have a little boy and his grandmother might need this.

February 25, 2014 at 11:48 am
(72) krystal says:

I just had my thyroid removed due to papillary cancer in January 2014 and just had i131 radiation treat. Dr. told me I would be 2-3 days of hospital isolation, then 7 days home isolation away from my children & pregnant women mostly. But my question is how do I know exactly when it’s save to be around my kids for sure. I saw post that say 23 days. I’m just worried because I also have a cousin that is expecting and don’t want to harm her or the baby because of radiation.

April 12, 2014 at 8:48 am
(73) Deana says:

I just had RAI 131 on Thursday, 12MCI. a very very small dose. I asked about beind secluded and the radiation nurse said I only needed to be in isolation that day. I’m concerned because my husband is diabetic and I have 2 older dogs. Who I miss very much! Today is day 3 and I have isolated myself. Since mine was so small do you think it is okay to return to the world? My Doctor told me I would be fine to return to work on Monday ( work in an Insurance Call Center). Any thoughts?

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