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Thyroid

  • Post
    sing123
    Participant
    Greetings all! Just had scans and am 1 year NED (again but I’ll so happily take it!)

    However, blood work shows a high TSH (7.8), though my other thyroid tests (such as T4) are normal. Since my one dose of ipi/nivo, I’ve lost adrenal function/ability to create cortisol and am on a permanent maintenance dose of hydrocortisone to replace it. Could the ipi/nivo also have affected my thyroid or could it be related to my lack of natural cortisol? I don’t have any symptoms of low thyroid so am quite puzzled.

    Very best to all of you amazing survivors AND stellar caretakers,

    Cindy

     

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      Steve33
      Participant
      Hi Cindy,

      It is definitely not uncommon for immunotherapy to affect the thyroid. I received Nivolumab monotherapy. My thyroid before extremely overactive after the first treatment (hyperthyroid). After about a month, my thyroid basically stopped working and I became hypothyroid. My TSH shot up to about 80. I started on synthroid (levothyroxine). Eventually my TSH came back in range with a dose of 200 mcg of synthroid. I’ve been off of nivolumab for 6 months now, so it appears by thyroid was permanently damaged by the immunotherapy.

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      sing123
      Participant
      Thanks, Steve33! Hope you are feeling well.

      Best,

      Cindy

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      Rick from NC
      Participant
      Hi, Cindy,

      Not sure how much it relates, but back in 1992 when I received IL-2 for my melanoma, I ended up hypothyroid and went on Synthroid for 1-2 years as I recall.  My thyroid gradually recovered, and I’ve been euthyroid ever since.

      Best wishes, Rick

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