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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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    • Replies
        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.

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

            Best,

            Cindy

            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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