rai side effects

[peron]

hello
i was wondering if the rai (radioactive iodine?) has any side effects. is it a pill or an injection? for how long-- i read that you must be in total isolation from others, is this true. what has been your experiences with it? my mothers appointment is on dec 18 with dr to discuss the options etcc we just want to know more questions to ask.


thanks

[michalay]

had rai in 2009  went into early menopause dry eyes sleep apnea asthma gerd thinning hair never felt good since should have never been giving rai was treated for hyperthyroidism after having baby

[mrsbinx]

I wish the doctors in Nuclear Med would be a little more forthcoming with the side effects and not blow them off. I was give nausea meds but told I probably wouldn't need them. I reported to them that I had every side effect from the withdrawl of the Cytomel after my TT surgery. I wish they would have told me to eat a bland diet for a few days due to the nausea. The foods I did eat right after the RAI now make me sick to even think about them. The nausea meds didn't work and it was 10 days before the nausea went away. I still can't taste much, and they never warned me about that. Told me NOT to suck on candies for the first 3 days..Also the Endo told me the Low Iodine Diet was NOT necessary but Nuc Med said I should have been on it for 14 days prior. In looking back I really didn't need to worry, I don't eat fish, ever, and was not eating dairy that much and our salt is None Iodinzed. I just wish these doctors and Nuc Med doctors would all be on the same page and more of this was consistent. Every doctor and patient you talk to has a different story seems like nothing is consistent

[marilyn10]

Me too! I was scared to tell people and worried about my throat feeling like it had cancer again after RAI.  It's been a week and a half and I still feel like something is in my throat.  No one told me that it would feel like that!  I'm getting more information from you guys than the Drs.  Maybe we could be like an experiment to them, and let them know.  I know they have soooo much to learn about lots of things.  I'm not knocking them.  They only know what they are being taught.  By enough people reporting these side effects, they may be able to warn people on the side effects, so they know why they are feeling that way. Thank you!

[marilyn10]

Wow!  I've gone through the same side effects of RAI!  I had to go to the emergency room for a migraine that wouldn't go away for 8 hours, and threw up with nasea.  Dr. put me in cat scan without contrast and said it was ok to see a neurologist if it keeps on.  He asked if I ever had a mirgrain before, and I said no that's why I'm here.  He looked confused about that.  But gave me pain and nausea shots.  The pain was still there a little even with the shot.  It was a pain on scale 7 about just nagging.  Tired.  I've lost some strength.  Still out of breath.  I was afraid that the cancer came back, because my throat was bothering me again like something was in there.  Thanks for telling me about the swelling and breathing problem!  These people don't tell you that!  I NEVER had those problems befor RAI.  Except throat problems.  Thank you!  You are right!

[marilyn10]

Wow!  I've gone through the same side effects of RAI!  I had to go to the emergency room for a migraine that wouldn't go away for 8 hours, and threw up with nasea.  Dr. put me in cat scan without contrast and said it was ok to see a neurologist if it keeps on.  He asked if I ever had a mirgrain before, and I said no that's why I'm here.  He looked confused about that.  But gave me pain and nausea shots.  The pain was still there a little even with the shot.  It was a pain on scale 7 about just nagging.  Tired.  I've lost some strength.  Still out of breath.  I was afraid that the cancer came back, because my throat was bothering me again like something was in there.  Thanks for telling me about the swelling and breathing problem!  These people don't tell you that!  I NEVER had those problems befor RAI.  Except throat problems.  Thank you!  You are right!

[marped]

I'm wondering if anyone else has had throat problems years after having RAI-131 after thyroidectomy. I had the RAI in May, 2006, and have a whitish patch (not raised, not bumpy) on the right upper, back throat. It is red on both sides; it's been this way for a year and a half. My doc told me to see an oral surgeon/dentist. I did, and he first mumbled something about "radiation burn", then said that it likely was something like an old bruise, where the colors turns from purple to yellow-white. I didn't get any bump or bruise in my throat! Mary P, GA

[Hburg]

i was given 102 on feb 23rd 2012. Stay in isolation for 2 full days. no human contact NONE.Put everthing in your room. Dont do not share a bathroom for at least 2 days if possible.Dont go around children for only 30minutes per day for 17days. I work with children not allowed to go back to work for at least 3 weeks.  Side effects my mouth really hurts cant go to bathroom. Laxatives dont even help. I still feel really tired and lots of muscle aches.  I cant even judge my food because i cant smell or taste my food Like I used too. I cant judge if i need more salt or less sugar, Get it!!!! I cant really smell my own breathe anymore. Or ordors. My skin on my hands feels so old now. My hair has fallen out so much.My teeth hurt and gums are so sore and i have a small hole in bottom.Painful right. I am just so tired.   I cant to another treatment again. I will just die . depression.
Everythin changes. Things I took for granted are gone:( OH my and lets not talk about hypo:( Low -idoine diet:( Its foods that i cant even eat anymore gum, hard candies, egg yolk,cheese,milk,salad, and etc.

[ythak]

I am scheduled for RAI next month.  The instructions included with the letter from the office that is administering the treatment said only that you are slightly radioactive after the treatment should avoid contact with pregnant women and young children.   It doesn't even say how long!  I will be receiving 100 mci.  I can't believe you have to dig for this info!

[39mom]

I had RAI two weeks ago and still get periodic headaches. I feel more fatigue, somedays are better than others. I am taking Cytomel in addition to my Synthroid to not be so hypo (was up to 60).  Waiting on the first scan results.

[gravessufferer6905]

I've had Graves disease for 6 years..went on meds in 06 and had a full remission by 08 but went through a stressful period last year and the disease came back! I started antithyroid meds and had a serious reaction two 2 different antithyroid meds so I couldn't have the surgery to kill the disease since my hormone levels couldn't be brought down! I had RAI last thursday and had only neck tenderness and metallic taste so far! I was given a low dose of 1/31 and followed all the instructions especially about drinking plenty of liquids and now I'm feeling pretty good!! I just hope I can manage a healthy diet and get exercise to keep off other health concerns like obesity and high blood pressure along with diabetes!! I feel like I made the only good choice I could make considering the health problems I had with Graves

[Wisdom777]

People do not do this unless you have been positively identified as having thyroid cancer.  The long term effects are terrible and the short term effects are misleading.

My life became one illness after another after this treatments.  I have met people who chose not to do this and have recovered.  They went alternative, naturopathic to determine their toxicology through chelation challenge.  The reason for my hyperthyrodism was in fact Lead, Cadmium, Mercury, NIckel and Copper overload while working in Art School with paints and other.  They never asked the right questions?  Due to this fact they could have killed me with this treatment.  It has taken me twenty years to find out that iatrogenic disease is what they caused. Thanks to a legal team I spoke too.  There are a number of other ways to deal with this conditions.  If you are a smoker, the cadmium in cigaretts would cause hyperthyroidism along with a whole host of other toxins.  You must STOP smoking!  Always start with a toxicology report...best people that do this are Naturopaths that specialize in chelation.  Check this article on RAI: http://www.hkcr.org/publ/Journal/vol8no3/full/127-135%20Side.pdf.

Short term negative effects are Hypothyroid dependend to drugs for life and potential bowel diarreha or constipation leading to diagnoses of colitis or IBS and other.  One of the long term effects is lukemia.  Please do not give uninformed consent as I did.  I lost twenty years of quality of life due to the medical treatments that followed after RAI.  I am getting ready to publish a book on the anatomy of my illness to warn people of drugs on the market that cause terrible harm and are not designed to heal you.  Be Wise or find Wise people outside the medical world.  This could have saved me twenty years of chronic disease. Susan

[stella5349]

In cancer, the first round of RAI happens. In a year you will have a body scan and possible be subjected again if your levels warrent another round.

[trsh12321]

I had RAI on Thursday and I'm on day 2 of isolation.  I feel alright for the first 1-2hrs after getting up then pretty yucky after.  I had a low dose only 30 not sure why cause I had cancer in both lobes and the doctor said I would be getting 100 when I was in to see him.  I had to send my family away.  I"m wondering if people know how many times do you normally need to go through RAI?

[mamadoodan1]

I had rai on Thursday of this week.  The only side effects I have had are...I have been very tired, and a bout of diarhea...other than that I feel fine

[stella5349]

I lost my taste and smell for over 2 years after RAI.

[arneece]

Did you have RAI for cancer or just for hyperthryoidism? I have Graves disease and will have RAI in a couple weeks. It's been 2 years since you did RAI, how long did it take for you to get it out of your system...even the taste?

[nissah46]

My tastebuds took about a month to get back to normal, but the metalic taste is ongoing, although not as bad .
trish

[nathasha_928]

I had a TT and removed left lymph nodes - this was done 2 months ago, I just had RAI treatment and  did final body scan yesterday, which is normal thank god.



BUT: I am experiencing bitter taste in my mouth, ALL food tastes terrible, how long til my tastebuds come back?



Thanks for your reply,



Nathasha

[stella5349]

I praise Graves Lady for her smooth recovery from RAI - but I unfortunately had a terrible time with it. The hospitol will give you a public awareness caution list and you should follow that very closely. On the other hand I was not informed of any personal side effects I would have after RAI. I asked if there were any - but was brushed off.

I had the most horrible sore throat and burning chest I ever experienced. Headache and I was nauseated. I was in isolation for 5 days and slept most of the time.

From the time I had RAI until now which has been four years I still to this day have this uncontrollable feeling of something stuck in my throat. My face and neck were swollen for over a week and you do feel yucky. Some days worst than others. This week feels like I just had the RAI again with that "stuck in my throat" feeling.

I took a pill to distroy the gland. Try to retrieve all the information on RAI from the sites listed above before the consultation and ask questions. DOn't let the procedure scare you or your mother. Some need this treatment to distroy cancer.  Make sure your doctor explains everything so you are confortable with this decision. It is permanent and can not be reversed.

I wish your mother the best in health with whatever she decides.

[Liz94]

I had my RAI last friday.  So far my side effects are that my teeth ache and my gums are throbbing, extreme nausea that seems to be subsiding now, metallic taste in mouth and food has no taste, and chest pain (but this is probably from being hypo and not the RAI.) I was also put on a steroid pack to help with the gum swelling and that has made me cranky and swollen and starving!  And dry mouth, all night long. Tell your mom just to drink water like there is no tomorrow and suck on the sour candy.

[paula813]

I had radiation for thyroid cancer that spread to several lymph nodes and tissues.   After a couple of hours I became so sick I was not able to get a sip of water in me.   2 and 1/2 days in the hospital I left with very swollen glands and my face was 4 times its normal size.  I was a mess.  I had it done on Jan 9 and I still have no taste,left side of the glands are still acting up and I am having so much trouble with my nose being dry and severe sinus problems I never seemed to have before.    It hasn't been fun.   Side effects for me are really getting me down.  The pet scan was no joke I freaked.  Next time its lala land for me to get through that again.   Good luck to all     Paula

[mbfish72]

Hi- I just had RAI done on Nov. 17 and I am still suffering from side effects. I had to have 100millicuries in a capsule because when I had thryoid sugery in June, they found thryoid cancer. I had to be in isolation for 10 days, meaning that I couldn't have any visitors until after the 10 days were up. What many doctors don't tell you is about the side effects of RAI. I have had a headache for 3 weeks now, that just won't go away. For the first 8 days after the treatment all I did was sleep and eat. I mean, I slept 12 hours a night, woke up, had coffee and breakfast, was back in bed within a 1/2 hour and asleep again for a couple of hours. This occurred for about 8 days later. I also had a major complication with the RAI treatment that I wasn't told about prior to my treatment. My throat swelled up to the point that it brought me to the Emergency Room because I couldn't breath. I was put on steroids and then sent home. The swelling went down with in 6 hours and I was fine with my breathing but these are things that the doctors should tell you prior to your treatment. My neck is still sore on the left side, because that is where the rest of the thryoid tissue is located. I also learned this week that the gland that is still in there, will take about 3 months to die off completely. I have had a reaction to my Synthroid, which I was taken off of for 5 days because it gave me rapid heart beats and hard ones. I don't believe that medication was the problem because I still have the heart problems, which are new since the RAI treatment. I will be talking with my doctor tomorrow to find out the results of the full RAI body scan to see the leftover RAI and where its located. I wish your mother the best of luck.

[GravesLady]

I had my RAI 10 years ago for uncontrollable weight loss due to hyperthyroidism.  I had no side effects.

Radioactive iodine treatment has few side effects, and these occur infrequently.
A sore throat may occur a few days after the treatment, which can be treated with acetaminophen.
Rarely, the salivary glands may swell, which is caused by the iodine and not the radioactivity. Some physicians believe that sucking hard candies (sour lemon drops) for a few days can prevent this.
Mild nausea may develop for a few hours after the iodine is taken, so it is best not to eat two hours before and two hours after the iodine administration.
the only effects of the radioiodine (131I) are on your thyroid gland and serious side effects are uncommon.  However if hyperthyroid you migh experience a thyroid storm which is more  exaggerated symptoms of hyper Hyerthroidism. If this happen just let your doctor know.

You will be measurably radioactive after your treatment even when you are allowed to go home. However, the radiation dose rate from you will be very low so exposure of others will be very low. Further, it falls off rapidly with distance; those farther from you receive less radiation exposure. The dose rate also falls off rapidly with time because 131I doesn't remain in the body very long. The total radiation dose to anyone else, even with close, continuous contact, will not cause harmful effects. There is no need for concern about effects on your family, pets, etc., but it is prudent to avoid close, prolonged contact for the first week.

The advice to patients who are going home depends on whether they were treated for hyperthyroidism or thyroid cancer and on how much radioactive iodine was administered. These variables determine how much the patient needs to avoid close contact and for how long. Concerns are heightened if very young children will be present because (1) taking care of a toddler requires longer and closer proximity than for older children, (2) one tends to kiss toddlers and saliva contains radioactive iodine, and (3) toddlers get their hands on everything and their hands go right to their mouths, so internal contamination can be an issue.

General guidelines given to patients who are going home may include the following items:

Arrange to have sole use of a bathroom for two days following treatment.
Avoid public transportation for the first day following treatment.
Limit personal automobile travel with others to only a few hours per day for the first two days following treatment. Keep as much distance as possible between you and other passengers.
Sleep in a separate room for the first two nights following treatment.
Arrange for any pregnant individuals or children less than two years old currently living at your residence to stay at a separate residence for three days following treatment.
Avoid close contact with others by maintaining a distance of 1 meter (approximately three feet) for up to three days following treatment.
Avoid going shopping, to the movies, to restaurants, etc., for the first two days following treatment.
Some precautions are necessary because of the small amount of radiation that emanates from the neck where the RAI is stored for a few days after treatment. While this radiation is beneficial for the person being treated, precautions are needed to reduce the radiation families and friends are exposed to.

Avoid prolonged contact with others, especially children and pregnant women.
In general, a distance of one arm's length should be maintained between the person treated and others who spend more than two hours next to the patient in any 24 hour period. This applies especially to children and pregnant women. While brief contact with a person after treatment is acceptable, sleeping together, watching television, going to movies, long care or plane trips should be avoided for approximately 11 days after the treatment.

Sharing food and utensils, including glasses, bottles, cans of soda, water, beer, etc., should also be avoided. For example, when the treated person is eating an ice cream cone, it should not be licked by anyone else. Dishes and eating utensils should be rinsed before being put with those of the rest of the family. Paper plates and plastic utensils should only be used if they are immediately disposed of outside the home. Cooking is fine, as long as the utensil used to taste the food while cooking is not re-used before rinsing.

Drink lots of liquids, void often, and flush twice.

The treated person should drinks lots of liquids, especially water, to help remove the RAI from the system, flush the toilet twice after using it, and be sure to thoroughly clean up any spilled urine. Laundry need not be washed separately unless the treated person has sweated heavily, such as after exercise.


Surgery generally does not remove all the thyroid tissue, so radioactive iodine (131I) is usually given to destroy any remnant tissue. Because the vast majority of the thyroid was removed, the patient will excrete most of the radioactive iodine in the first day or two after it is administered.

Iodine (131I) used in thyroid treatment might be given in pill form or as a liquid. The choice is an institutional decision based on many factors, part of which is the amount to be given to a patient. Most other radiopharmaceuticals are either injected or inhaled.

Good luck!

[utahmomma]

I had my RAI on 15 November.  Like mbfish72, I also had a 100mCi dose.  My dose was in a liquid form that I had to drink through a straw.  My full body scan was done one week later.

The side effects I had (and am still having) were from going off the Synthroid and sending my TSH level extremely high.  I didn't feel the radiation or see any other effects from it other than my skin peeling slightly (hands, feet, around mouth and nose).  The lethargy, body aches, exhaustion, coldness, terrible depression, and deep muscle cramps all hit long before I received the radiation and are still with me although getting better.

I was isolated at home for 5 days following the treatment.  I was able to restart my thyroid medication (double dose) and regular food 24 hours following the large dose of radiation.

Here are some good sites that may help you and your mother prepare for the RAI:  (realize that the protocols at Columbia are very different than the protocols my hospital uses)
http://www.cumc.columbia.edu/dept/thyroid/raiprep.html
http://www.thyca.org/rai.htm#diet

There are a few tricks that I learned throughout the process.  
-Have your mother drinks LOTS of water for 5 days following the dose - she will need to flush the radiation out as quickly as possible to prevent damage to her bladder and water is essential.
- When driving her home from the hospital, have her be as far away from others in the car as possible - preferably in the back seat on the passenger side as far away from the driver as possible and no one else in the vehicle.
- Have some sour candies or lozenges at the house.  A common side effect is the radiation getting "caught" in the salivary glands causing swelling.  Sucking on sour candy helps flush your salivary glands
- RAI can make some people constipated.  It is critical that her intestines flush the radiation out of her system.  You may need to have some laxatives around the house in case this becomes a problem.
- Of course follow the safety protocols - flush the toilet 2-3 times after urinating for the first 3-5 days; wash clothing and bedding separately; use disposable utensils; no lengthy contact with others (more than a few minutes) for the first 3-5 days.

Her doctor (or the hospital) should give her all the protocols necessary and a diet to follow.  If her doctor doesn't, please check out the web sites above for some great information.  Here is also a great cookbook for the low-iodine diet (most patients will have to be on this diet for 3-6 weeks before RAI):  http://www.thyca.org/Cookbook.pdf

Hang in there - RAI seemed really intimidating and frightening to me last month but it's really not that terrible.  I've had friends who have gone through all sorts of cancer treatments (radiation, chemo) for other forms of cancer and I'll take RAI any day of the week over what they have had to deal with!

Keep us posted.