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Ipi destroying thyroid

Forums General Melanoma Community Ipi destroying thyroid

  • Post
    awillett1991
    Participant
      Finished Ipi Dec 3rd, thyroid levels high then closer to normal, bouncing around during and since. Dr says he has seen it before and believes it will eventually settle down to a consistent level – hypothyroid- treated with synthroid. I’m so sleepy during the day, have plenty of energy to do what I want, just sleepy when I sit down for something. No med changes. Nurse offered to run thyroid blood work but I passed since they wont treat it yet anyway, why bother? Anyone had Ipi wear out their thyroid? How long did it take to stabilize?

      She really doesn’t think it’s the Zelboraf either though I am suspicious…

      Thanks, Amy

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    • Replies
        Tina D
        Participant

          Amy,

          As you know, my thyroid issues are actually pituitary issues… but def from the ipi. My Dr did say that many times the endocrine issues are permanent and treated with replacement hormones. I am thinking I'd let them test your levels, though, next time you are there. It would be good to know what the trend is, and how else would they know when it "settles down" to where it will be. Also, if the levels were extremely low, they may reconsider not treating it yet.Do you know if they have tested your TSH, just to be sure it is not pituitary related? It would end up being treated the same, I think, but if it was pituitary related, they would want to check some other levels, too. Just some thoughts….

          Really, I guess it is nothing short of amazing that our bodies continue to function so well with all that some of them have been subjected to!! 

          Tina

          Tina D
          Participant

            Amy,

            As you know, my thyroid issues are actually pituitary issues… but def from the ipi. My Dr did say that many times the endocrine issues are permanent and treated with replacement hormones. I am thinking I'd let them test your levels, though, next time you are there. It would be good to know what the trend is, and how else would they know when it "settles down" to where it will be. Also, if the levels were extremely low, they may reconsider not treating it yet.Do you know if they have tested your TSH, just to be sure it is not pituitary related? It would end up being treated the same, I think, but if it was pituitary related, they would want to check some other levels, too. Just some thoughts….

            Really, I guess it is nothing short of amazing that our bodies continue to function so well with all that some of them have been subjected to!! 

            Tina

            Tina D
            Participant

              Amy,

              As you know, my thyroid issues are actually pituitary issues… but def from the ipi. My Dr did say that many times the endocrine issues are permanent and treated with replacement hormones. I am thinking I'd let them test your levels, though, next time you are there. It would be good to know what the trend is, and how else would they know when it "settles down" to where it will be. Also, if the levels were extremely low, they may reconsider not treating it yet.Do you know if they have tested your TSH, just to be sure it is not pituitary related? It would end up being treated the same, I think, but if it was pituitary related, they would want to check some other levels, too. Just some thoughts….

              Really, I guess it is nothing short of amazing that our bodies continue to function so well with all that some of them have been subjected to!! 

              Tina

              Janet Lee
              Participant

                I don't know if my experience helps or not, but for what it's worth: my thyroid was pretty much destryed by radiation several years ago (not melanoma), My TSH level was something like 200 (normals range something like 0.5-12.0???). Anyway, that meant that my pituitary gland was over-producing TSH because my thryroid was not doing its job (hypothyroid). I remember being very tired, and  just "not feeling right." The doctor actually was telling me that what I was feeling was "normal" after all I'd been through (chemo and radiation for Hodgkins Lyphoma). He did the TSH test just for the heck of it and was shocked when he got the results. I've been on synthroid ever since with no further problems or issues.

                In my  opinion, I'd get the blood tests and keep my eye on those TSH levels.

                Good luck,

                Janet Lee

                Janet Lee
                Participant

                  I don't know if my experience helps or not, but for what it's worth: my thyroid was pretty much destryed by radiation several years ago (not melanoma), My TSH level was something like 200 (normals range something like 0.5-12.0???). Anyway, that meant that my pituitary gland was over-producing TSH because my thryroid was not doing its job (hypothyroid). I remember being very tired, and  just "not feeling right." The doctor actually was telling me that what I was feeling was "normal" after all I'd been through (chemo and radiation for Hodgkins Lyphoma). He did the TSH test just for the heck of it and was shocked when he got the results. I've been on synthroid ever since with no further problems or issues.

                  In my  opinion, I'd get the blood tests and keep my eye on those TSH levels.

                  Good luck,

                  Janet Lee

                  Janet Lee
                  Participant

                    I don't know if my experience helps or not, but for what it's worth: my thyroid was pretty much destryed by radiation several years ago (not melanoma), My TSH level was something like 200 (normals range something like 0.5-12.0???). Anyway, that meant that my pituitary gland was over-producing TSH because my thryroid was not doing its job (hypothyroid). I remember being very tired, and  just "not feeling right." The doctor actually was telling me that what I was feeling was "normal" after all I'd been through (chemo and radiation for Hodgkins Lyphoma). He did the TSH test just for the heck of it and was shocked when he got the results. I've been on synthroid ever since with no further problems or issues.

                    In my  opinion, I'd get the blood tests and keep my eye on those TSH levels.

                    Good luck,

                    Janet Lee

                    awillett1991
                    Participant
                      Thanks yes my thyroid is normal and my TSH wasn’t run. Calling them Monday. TSH has bounced between .02 and .7, then T3/T4 are high or normal.

                      Frustrating.

                      Amy

                      awillett1991
                      Participant
                        Thanks yes my thyroid is normal and my TSH wasn’t run. Calling them Monday. TSH has bounced between .02 and .7, then T3/T4 are high or normal.

                        Frustrating.

                        Amy

                        awillett1991
                        Participant
                          Thanks yes my thyroid is normal and my TSH wasn’t run. Calling them Monday. TSH has bounced between .02 and .7, then T3/T4 are high or normal.

                          Frustrating.

                          Amy

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