After-effects of I-131 Iodine Radiation Treatment

Latest post 01-05-2014 2:42 PM by rinansano. 27 replies.
  • 09-30-2007 7:33 PM

    After-effects of I-131 Iodine Radiation Treatment

    I was recently diagnosed with thyroid cancer, had surgery to remove the entire thyroid, and then had the I-131 Iodine ratiation treatment.  This was at the end of August, and I'm still having problems with my sense of taste.  I have a salty, metallic taste in my mouth, and can't really taste most foods.  I can taste mint, but other than that, most everything else is just blah.

    Has anyone else experienced this, and if so, how long does it last?  I'm hoping it's not permanent!

    Right after the treatment (within 2-3 days), my tongue felt like it had been scalded, and then my mouth got really sore.  My dr gave me a 3-day prescription of furosimide (I think that's what it was), and it helped somewhat, got rid of the soreness, but the taste issue is still there.

     I appreciate any info, because I really can't find anything about this in any of the information articles.

     Thanks!

  • 10-04-2007 6:13 PM In reply to

    Re: After-effects of I-131 Iodine Radiation Treatment

  • 10-06-2007 11:47 AM In reply to

    Re: After-effects of I-131 Iodine Radiation Treatment

    Believe me, we all can relate to your dilema. I had my thyroid remove last Nov. 06 and had the radiation therapy done in Jan. 07. I still have some problems with low saliva, lack of taste at times. Not all the time, and better than the beginning. But I do think the radiation did more damage than the cancer itself. Now I am tired all the time, depressed, have wierd things happen healthwise. Aches and pains, so bad sometimes I need meds for it. I often wonder how many joints could hurt at the same time. It makes you wonder if the cure was worse than the cancer. It is so frustrating because med people treat this cancer so lightly, as so easily cured, and family members so don't understand the things that you are going through. They think, oh well, she's cured, what is she complaining about? At times I wish all of them could walk a mile in our shoes, and then they may understand the quality of your life is just not the same, and never will be. I am going for the whole body scan in Jan.. along with that, LID diet, and injections. It isn't fun to look forward to. I am thinking also, that if there were any cancer there, I may opt out of the radiation for awhile. I don't think I could do it again, at least not in the near future.

      But keep the faith, and realize we all know what you are going through. Even if no one else does, we do. We all have been there and still are there.

                                 Mrs. C

  • 10-06-2007 11:47 AM In reply to

    Re: After-effects of I-131 Iodine Radiation Treatment

    Believe me, we all can relate to your dilema. I had my thyroid remove last Nov. 06 and had the radiation therapy done in Jan. 07. I still have some problems with low saliva, lack of taste at times. Not all the time, and better than the beginning. But I do think the radiation did more damage than the cancer itself. Now I am tired all the time, depressed, have wierd things happen healthwise. Aches and pains, so bad sometimes I need meds for it. I often wonder how many joints could hurt at the same time. It makes you wonder if the cure was worse than the cancer. It is so frustrating because med people treat this cancer so lightly, as so easily cured, and family members so don't understand the things that you are going through. They think, oh well, she's cured, what is she complaining about? At times I wish all of them could walk a mile in our shoes, and then they may understand the quality of your life is just not the same, and never will be. I am going for the whole body scan in Jan.. along with that, LID diet, and injections. It isn't fun to look forward to. I am thinking also, that if there were any cancer there, I may opt out of the radiation for awhile. I don't think I could do it again, at least not in the near future.

      But keep the faith, and realize we all know what you are going through. Even if no one else does, we do. We all have been there and still are there.

                                 Mrs. C

  • 11-13-2007 2:34 PM In reply to

    Re: After-effects of I-131 Iodine Radiation Treatment

    I hope that you are feeling much better by this time, but I just joined up today and saw your message.  I went through the same thing.  It was aweful!!  I was diagnosed in May, surgery in June to have my thyroid and lymph glands on both sides of my neck (from behind my ears down) and had my radioactive iodine during teh first week of August.  Here it is November and I still have those days when everything tastes like burnt metal and othe days when I have extreme nausia. 

    I am also having problems finding information about any of this, including thyroid cancer in general.  And I was recently told that my thyroglobulin levels were way too high and there was an uptake of the iodine in my lungs.  And yet no other information or help after all of that info.  This is not something youtell someone and then send home. 

     

    If you need or want to talk, please let me know!  My email is ronda_b_baker@yahoo.com.

  • 01-12-2008 2:50 PM In reply to

    Re: After-effects of I-131 Iodine Radiation Treatment

    I hope all is well with everyone here.  Just wanted to let you know what happened after my RAI treatment.  It took a good long bit for the tastebuds to come back, but they do come back. Spit....well, that's another thing.  My salivary glands were pretty much fried.  1 year afterwards, they all decided to swell up to chipmunk size and I had a pretty interesting time with that, but now, I'm 3 years out, and they haven't swelled again, I don't produce as much saliva as I used to, and I don't think I will ever.  Eating peanuts and crackers is a total blast :)....I've been off the synthroid for 3 weeks right now, I'm about to do my final RAI and body scan to be catergorized "IN REMISSION" so I'm jazzed but exhausted.  If anyone has ANY questions about what to expect or just totally goofy stuff that happens, please feel free to contact me at brittmoo1971@yahoo.com

     Oh yeah....Total thyroidectomy and removal of a few lymph nodes and diagnosis on the same date 10/27/2005....Papillary Carcinoma metasticized (sp?) to the lymph nodes....WOOHOO!!!  Had a wonderful experience in the hospital....I can sit back and howl about it now.....Anyways....Hope to hear from anyone soon   

  • 04-26-2008 1:06 PM In reply to

    Re: After-effects of I-131 Iodine Radiation Treatment

    Hi,

    I am a ten + thyroid survior.  total thyroidectomy and the I-131 radiation treatment.  This was back in 1997.  Yes, I am sorry there still is not much info out there on this one.  But, just want to say to every one that your life will improve, and you will go on.  I don't remember losing the sense of taste but every thing is working well today and saliva glands as well.  The toughest thing to get through is the the fatiuge from no thryoid.  You may expereince a period of time until the doctor's gets your dosage correct.  It really took mine about 5-6 years.  You will just know when your dose is right.  I have read all of the posting as would like to address some points along the way.  I continued to expereince aches and pains in the joints mustly hips and muscle soreness.  Just keep telling your doctor if you think that your dosage is not correct.  I felt better but some things still were not right.  It does take a long time to get back to feeling healthy again after this.  The general public does not know what the thyroid does for the body. We know all to well.:)   I would like to help any one in any way that I can.  I still have questions about this post cancer ten years later.  Yes, keep your faith. and work toward regaining your health.  Honor your body and listen to it.  If it tells you that it needs to rest rest it.  I tried to keep going as if nothing was wrong.  But now in my "wisdom" I listen to my body and honor it's requests.  Sending every one peace and love. 

  • 05-14-2008 3:21 AM In reply to

    • finai
    • Not Ranked
    • Joined on 05-14-2008
    • Posts 1

    Re: After-effects of I-131 Iodine Radiation Treatment

    MY MOTHER HAS HAD THYROID CANCER SINCE 1984 AND HAS GONE THROGH SO MUCH AND IS A FIGHTER.  SHE HAS A AGRESSIVE TRYROID CANCER AND HAS RADIO IODINE TREATMENT EVERY YEAR.  SHE HAD A FULL SURGERY AND NOW HAS A STOMA AND ALSO HAD BREAST CANCER AND IS IN HER 70'S AND DOING O.K.  KEEP GOING LADIES DON'T GIVE UP. 
    FINAI

  • 06-24-2008 11:58 PM In reply to

    • enzo
    • Not Ranked
    • Joined on 06-08-2008
    • Posts 1

    Re: After-effects of I-131 Iodine Radiation Treatment

     Hi,

    My name is Vince I had Tyroid Cancer non agressive surgery last year 5.28 except this year it came back I was given I 131 I had mettalic taste just few weeks a my taste back except I have been experienceing aches on my legs and joints. I called the hospital and spoke to nurse of endecronolist they claim that its not realated they insist that I should call my family doctor but I read various cases with similar symptoms.

    My worse scenario is in the morning hard to get out of bed..I am 51..Its so hard to see the light at the end of this tunnel!!

  • 09-13-2009 11:45 PM In reply to

    Re: After-effects of I-131 Iodine Radiation Treatment

    Hi,

    My name is Noelani and I have recently gone through the Iodine Radiation. I'm so happy for people like you all for sharing your stories. I too have lost the sense of taste and often have dry mouth. I thought maybe i just need a little time to get over this. However, after reading some of your letters it sounds worse than when i first started. I will continue to pray for all of us. God bless you all. Amen

     

    Much Aloha,

    Noelani

  • 06-30-2010 4:49 PM In reply to

    Re: After-effects of I-131 Iodine Radiation Treatment

     I am also a servivor. 2001, after i still have bad joint and muscle pain,, my leg muscle are chronically sore to the point of narcotics i am wondering if there are so many more out there.  I am an rn and would like to investigate this matter more

  • 06-30-2010 4:52 PM In reply to

    Re: After-effects of I-131 Iodine Radiation Treatment

     I too had 131 in 2001 and sice have had chronic muscle and joint pain from my hips down.  Alot if doctors regular md dont understand.  i go get steroid shots and they help but the pain just gets worse with more activity to the point i am on ssdi. I am an rn and investigating this siuation please contact me

  • 06-30-2010 4:57 PM In reply to

    Re: After-effects of I-131 Iodine Radiation Treatment

     i also had 131 and my side effects are severe joint and muscle pain esp hips down.  I did go to my regular md and he had no answers,  i went to specialist in boston and they also had no answers my surgery was in 2001 and i am and every day i have joint muscle pain to the point of medication and steroid shots.  i also had to go on ssdi.  I am still am an rn and woulf like to further this conversation. please contact me

  • 08-11-2010 11:07 AM In reply to

    • joyus
    • Not Ranked
    • Joined on 08-11-2010
    • Posts 1

    Re: After-effects of I-131 Iodine Radiation Treatment

     I HAD THYROID AND LYMPHNODE SURGERY ON JULY 28 2010, WANTED TO TELL YOU THERE IS GREAT SIGHTS ,MED HELPIS ONE SIGHT AND MY THYROID.COM IAM NOT LOOKING FORWARD TO THIS TREATMENT BUT I HAVE READ SOME WOMEN OPT NOT TO HAVE I131 BECAUSE THE RISKS ARE GREATER THAN HAVING CELLS LEFT,NOT SURE WHAT IS GOING TO HAPPEN GOOD LUCK JOYUS

  • 10-24-2010 8:18 PM In reply to

    Re: After-effects of I-131 Iodine Radiation Treatment

     Wondering if you did go ahead with the RAI? If so, how was your experience?

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