Graves Disease returning after RAI Treatment?

audigal2008
audigal2008 Posts: 1,129 Member
edited October 2024 in Health and Weight Loss
Hello all! I was diagnosed with Graves Disease about 10 yrs ago. It was so bad I was told I would die if I didn't fix it. I had the radio active iodine. The docs tell me my levels are ok (not in my opinion) So I currently take NO meds! ( I should get re tested) A symptom I had was tiny itchy blisters and peeling hands, THIS has come back. My hands are dry and peeling and those itchy blisters have returned. Any others have this? Has anyones thyroid issues came back AFTER RAI?
Just curious!!
Thanks!

Replies

  • lmarshel
    lmarshel Posts: 674 Member
    I have Graves Disease and elected not to have the radioactive iodine therapy. Mine is not that severe. But in my research of the disease, I found that many people have the RAI done more than once. The doctors try to go a little overboard, which is why most people end up having hypothyroidism after the procedure. They don't want to have to repeat the procedure if they can avoid it. But it's not an exact science, and sometimes things are mis-calculated and the procedure has to be repeated to kill enough cells so that the disease does not return. I would get in to see your endocrinologist as soon as possible. If you are relapsing, you need medical treatment.
  • SydandPaigesMom
    SydandPaigesMom Posts: 86 Member
    I had to have two doses of RAI before it "worked" aka killed my thyroid. When they give you the treatment, it's an educated guess on what it will take for it to work. Sometimes, in cases like mine, the first dosage was not enough. When was the last time you had your thyroid levels tested?
  • audigal2008
    audigal2008 Posts: 1,129 Member
    I had overactive thyroid, the reason I had the RAI was to be able to have my son, they said Id never get pregnant again if I didnt have the procedure. Its been a few yrs since I have been tested. I will make an appt soon, but they tell me my levels are al ok, I beg to differ!
  • lmarshel
    lmarshel Posts: 674 Member
    If you haven't had blood work done in a couple of years, there is no way the doctor could know where your numbers are. Mine change from month to month. This disease changes constantly, so it's possible you were fine 2 years ago and are not fine now. Definitely get in to see the doctor. Best of luck to you. :)
  • hpsnickers1
    hpsnickers1 Posts: 2,783 Member
    Wow that sound exactly like the hand eczema I used to have. Tiny clumps of blisters that itched like crazy. Nothing given to me helped.

    I'm not trying to push Primal/Paleo on you but I have done some reading on marksdailyapple.com and a lot of people have dealt with autoimmune diseases and have had success at controlling them by going Paleo/Primal. Maybe you should check the forums over there and search "Graves disease" or "thyroid". I just did and found some information but my computer is soooooo slow (it's old).

    I was diagnosed with Fibromyalgia last year. Not really an autoimmune disease but have learned by experimenting that the grains and sugars I was eating all the time was causing it. (muscle and joint pain, no energy, bad sleep; I felt like I had the flu with no fever). The doctor couldn't tell me this - she gave me a pill and I couldn't afford it. And most doctors these days just treat (preferably with a pill) and don't try to find out the underlying cause so they can heal you. Since I cut grains out of my diet my whole body has changed inside and out.
  • audigal2008
    audigal2008 Posts: 1,129 Member
    Thanks every1! I will def make an appt...as soon as my kids are back in school! Yay for September! lol
  • audigal2008
    audigal2008 Posts: 1,129 Member
    OMG I am proned to tiny bits of excema as well!! Thanks for the info!
  • LuciaLongIsland
    LuciaLongIsland Posts: 815 Member
    I have Graves Disease and elected not to have the radioactive iodine therapy. Mine is not that severe. But in my research of the disease, I found that many people have the RAI done more than once. The doctors try to go a little overboard, which is why most people end up having hypothyroidism after the procedure. They don't want to have to repeat the procedure if they can avoid it. But it's not an exact science, and sometimes things are mis-calculated and the procedure has to be repeated to kill enough cells so that the disease does not return. I would get in to see your endocrinologist as soon as possible. If you are relapsing, you need medical treatment.

    I have had Graves Disease for 3 years. I don't know if I should do the RI. I take 5 mg of Tapazole. I am seeing a third doctor next week. Please message me if you have advice.
  • LuciaLongIsland
    LuciaLongIsland Posts: 815 Member
    I have Graves Disease and elected not to have the radioactive iodine therapy. Mine is not that severe. But in my research of the disease, I found that many people have the RAI done more than once. The doctors try to go a little overboard, which is why most people end up having hypothyroidism after the procedure. They don't want to have to repeat the procedure if they can avoid it. But it's not an exact science, and sometimes things are mis-calculated and the procedure has to be repeated to kill enough cells so that the disease does not return. I would get in to see your endocrinologist as soon as possible. If you are relapsing, you need medical treatment.

    I have had Graves Disease for 3 years. I don't know if I should do the RI. I take 5 mg of Tapazole. I am seeing a third doctor next week. Please message me if you have advice. I have had no reaction except weight gain.
  • LuciaLongIsland
    LuciaLongIsland Posts: 815 Member
    I had to have two doses of RAI before it "worked" aka killed my thyroid. When they give you the treatment, it's an educated guess on what it will take for it to work. Sometimes, in cases like mine, the first dosage was not enough. When was the last time you had your thyroid levels tested?
    What is the procedure like? I am scared as I am alone
  • kristers03
    kristers03 Posts: 74 Member
    I was diagnosed with Graves Disease in November 2009 had the RAI Treatment in Feburary of 2010. I went hypo and gained about 30 lbs because of it. The procedure is so easy, you just take a pill and avoid people and children for about 3 days. They say that you might have some throat soreness, and I might have had a smidge, but that was the only side effect, other than going hypo(which they said would most likely happen). I am on levothyroxine now and take it once daily to keep my levels in the "normal range." I still find it difficult to loose weight, but with MFP, its coming off slowly but steadily :)
  • bmay82
    bmay82 Posts: 1
    I also was treated for Graves Disease using RIA. My thyriod is NEVER regulated. I have seen many different Endos and doctors and NOTHING! I am constantly having to change my meds and everytime I get retested and I am changing again. I also have these bumps that are like small hard blisters and itch like crazy. But I dont know if this is due to Graves Disease or thyriod issues but I will definatly ask the next time I go in.
  • Kampaige
    Kampaige Posts: 1
    I had RAI treatment 12 days ago. I had been not feeling great for over a year and practically bedridden for 3 months. I finally ended up in ER and was diagnosed with hyperthyroid. My TSH level was so low it registered as trace amount. After going through with the other test it was determined that it was caused from Graves Disease. My question is how long after the RAI before you start feeling any better. I'm 5'4" and down to 94lbs. They did give me Atenenol to control heart palpations but I still get dizzy walking. I know everyone's recovery is different but I would like an idea of how long before I'm not fatigued all the time and other symptoms. Also once my hyperthyroid is taken care of what the Graves Disease itself is going to effect me. Thank You I appreciate any advice.
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