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Problems after I131 treatment

caitlynm
caitlynm CSN Member Posts: 3
edited March 2014 in Thyroid Cancer #1
I had a total thyroidectomy in Dec. 2006 which showed follicular variant papillary carcinoma. I underwent the I131 treatement in March of 2007 and had massive problems with my parotid gland while I was still in the hospital and it has kept getting worse for the past 2 1/2 years. I was finally cancer free in Jan of this year, and have just been told I need a superficial parotidectomy because of chronic inflamation and infection. I am on .225mg of synthroid and am constantly tired and have an extremely difficult time losing weight. 2 things...has anyone had to have their parotid gland removed and what can be done about the tiredness and weight. I'm only 37 and this will be my 16th surgery....
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Comments

  • jooppium33
    jooppium33 CSN Member Posts: 2
    #2
    Hii. I would stay in contact
    Hii. I would stay in contact with your endocrinologist. He can give you a nutritionist, that can guide you. I know it's a long road to recovering. I had my thryroid out in nov 2009, and still trying to get on track, with fatigue. I just had another readioactive iodine treatment snce my first surgery, as my cells became active again. Hang in there. Keep in touch if you'd like!!
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  • mbdavies
    mbdavies CSN Member Posts: 2
    #3
    Problems after I131
    Caitlyn M,

    Hi. I too had a total thyroidectomy but I was treated for papillary carcinoma. My suggestion mirrors others which is, no matter how frustrating, keep in touch with your endocrinologist. For your tiredness and weight issues I can suggest what has worked really well for me. I have started taking vitamin D3 1000IU daily and also taking B12(1000IU or 2000IU)daily but I take them before bed. Those supplements combined with religously taking my levoxyl 1 full hour before I eat (which has been difficult because I wake up hungry) have made a massive improvement in my energy level. Since I have more energy now, I have been able to exercise more. I have started weight watchers and I am losing 1 to 3 pounds a week without starving. Also, you want to look for foods or medicines that could be interfering with your levoxyl absorption (or whichever brand you take levothyroxine...etc) I found that because I was eating an ounce of walnuts with my breakfast I was not absorbing. You can google it and see what foods/supplements interfere. I hope this helps. Keep your chin up and remember that you CAN do it!

    Marianne
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  • jcvolt
    jcvolt CSN Member Posts: 69
    #4
    It is not
    It is not your only salivary gland but I don't know of anyone who had theirs removed before. Maybe there is a yahoo group for that!
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