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Thyroid issues on ipi/nivo trial
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Thyroid issues on ipi/nivo trial

› Forums › General Melanoma Community › Thyroid issues on ipi/nivo trial

  • Post
    • March 17, 2015 at 5:18 pm
    Eileensulliv
    Participant

      I had my first dose of ipi and Nivo at the end of February. I was supposed to have my second treatment this Thursday, but my thyroid levels are not normal, so I cannot get my treatment. This Saturday I'll go for another thyroid blood test and Monday morning my doctor will call with the results, and whether or not I can have my treatment next Thursday. 

      In the time from my first treatment, I have experienced fevers (highest was 102.5), fatigue, vomiting, loss of appetite, sweats and chills, racing heart, shaky hands, shortness of breath, and rash and itching. I started to feel MUCH better Sunday and Monday, but today I don't feel as good. My doc put me on a beta blocker to help regulate my thyroid. My T3 and T4 levels are quite high, and my TSH is very low. 

      Has anybody else had thyroid issues while on ipi/Nivo? If so, what worked for you? I've been researching foods that will help, but just wondering if anybody has some advice. Thank you very much!

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    • Replies
        • March 18, 2015 at 3:00 am
        Bubbles
        Participant

          Sorry you are having to deal with that, Eileen. Unfortunately many endocrine problems, thyroid problems in particular, are pretty common on both anti-PD1 and ipi. They occur even more frequently on the combo. At least one patient in my nivo study experienced hypothyroidism. Usually folks are supplemented with a drug like synthroid and though you sometimes have to play with the dosage to get it stabalized, they can then continue therapy. It does often mean you have to continue the synthroid for life, but many folks are able to do that pretty well. Hope it all gets straightened out quickly and you start to feel better soon! Celeste

            • March 18, 2015 at 9:54 am
            Want2help
            Participant

              Hypothyroidism is a quite common condition also in otherwise healthy people. I have hypothyroidism and I have known about it for more than 10 years. Both my father and my sister have it. I take Levotyroxin (I think that is the same as synthroid) and I have absolutely no problems related to the hypothyroidism.

              I just want to say that it is definitely not the worst thing that can happen.

              • March 19, 2015 at 3:36 pm
              Eileensulliv
              Participant

                Thank you both for your replies! They said I have hyperthyroidism, and yesterday I got even more sick, so they had me come in for more scans and tests. Today they called and told me to stop taking the beta blocker because my thyroid function has improved, but that they are not going to give me my treatment next week, because they really don't know why I got so sick yesterday. Im just very anxious to get back on the treatment, but I will have to practice patience!

                • March 19, 2015 at 3:36 pm
                Eileensulliv
                Participant

                  Thank you both for your replies! They said I have hyperthyroidism, and yesterday I got even more sick, so they had me come in for more scans and tests. Today they called and told me to stop taking the beta blocker because my thyroid function has improved, but that they are not going to give me my treatment next week, because they really don't know why I got so sick yesterday. Im just very anxious to get back on the treatment, but I will have to practice patience!

                  • March 19, 2015 at 3:36 pm
                  Eileensulliv
                  Participant

                    Thank you both for your replies! They said I have hyperthyroidism, and yesterday I got even more sick, so they had me come in for more scans and tests. Today they called and told me to stop taking the beta blocker because my thyroid function has improved, but that they are not going to give me my treatment next week, because they really don't know why I got so sick yesterday. Im just very anxious to get back on the treatment, but I will have to practice patience!

                    • March 18, 2015 at 9:54 am
                    Want2help
                    Participant

                      Hypothyroidism is a quite common condition also in otherwise healthy people. I have hypothyroidism and I have known about it for more than 10 years. Both my father and my sister have it. I take Levotyroxin (I think that is the same as synthroid) and I have absolutely no problems related to the hypothyroidism.

                      I just want to say that it is definitely not the worst thing that can happen.

                      • March 18, 2015 at 9:54 am
                      Want2help
                      Participant

                        Hypothyroidism is a quite common condition also in otherwise healthy people. I have hypothyroidism and I have known about it for more than 10 years. Both my father and my sister have it. I take Levotyroxin (I think that is the same as synthroid) and I have absolutely no problems related to the hypothyroidism.

                        I just want to say that it is definitely not the worst thing that can happen.

                      • March 18, 2015 at 3:00 am
                      Bubbles
                      Participant

                        Sorry you are having to deal with that, Eileen. Unfortunately many endocrine problems, thyroid problems in particular, are pretty common on both anti-PD1 and ipi. They occur even more frequently on the combo. At least one patient in my nivo study experienced hypothyroidism. Usually folks are supplemented with a drug like synthroid and though you sometimes have to play with the dosage to get it stabalized, they can then continue therapy. It does often mean you have to continue the synthroid for life, but many folks are able to do that pretty well. Hope it all gets straightened out quickly and you start to feel better soon! Celeste

                        • March 18, 2015 at 3:00 am
                        Bubbles
                        Participant

                          Sorry you are having to deal with that, Eileen. Unfortunately many endocrine problems, thyroid problems in particular, are pretty common on both anti-PD1 and ipi. They occur even more frequently on the combo. At least one patient in my nivo study experienced hypothyroidism. Usually folks are supplemented with a drug like synthroid and though you sometimes have to play with the dosage to get it stabalized, they can then continue therapy. It does often mean you have to continue the synthroid for life, but many folks are able to do that pretty well. Hope it all gets straightened out quickly and you start to feel better soon! Celeste

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