Latest scans and tyroid issues – Graves Disease/Hyperthyroidism

› Forums › General Melanoma Community › Latest scans and tyroid issues – Graves Disease/Hyperthyroidism

  • Post
    • January 21, 2013 at 1:15 am
    Rocco
    Participant

      Howdy,

      It's been a while – thought I'd update folks.  I'm now on a 6 month scanning schedule.  I had scans (MRI/CT) this week, with follow-up appt with my Onc.  MRI = clean, no issues.  Still NED, but the CT showed inflammed/enlarged thyroid as a new issue.  My Onc took additional labs to check thyroid levels.  Results showed that they were way off, so off to the Endocriniologist.

      Howdy,

      It's been a while – thought I'd update folks.  I'm now on a 6 month scanning schedule.  I had scans (MRI/CT) this week, with follow-up appt with my Onc.  MRI = clean, no issues.  Still NED, but the CT showed inflammed/enlarged thyroid as a new issue.  My Onc took additional labs to check thyroid levels.  Results showed that they were way off, so off to the Endocriniologist.

      I was blessed to get an appointment the very next morning with the Endo that I had worked with during my ipi side effect/ eye-related issues.  At that time my eyes were reacting as if I had Graves disease, but there were no major issues with my thyroid.  This time the Endo is almost certain I have Graves disease /hyperthyroidism.  Thankfully my eyes don't seem to be involved at this time – and I'm praying it stays that way.  I'm now on meds to try and right things. 

      Over the past couple months I've actually had several of the symptoms of Graves/hyperthyroidism, but never looked at them as a whole, always writing each off to something else.  What can I say, I let my guard down since my scans had been clean for a few years now.

      So, I'm back in patient mode for a bit, jotting down each little thing to report back to my Endo and Onc. So long as the meds work and my eyes don't get involved, the plan is to stay on the meds for 2 years, testing along the way until it goes into remission (Endo's word not mine).

      So now cancer issues for now, just a crappy thyroid!

      Hang in there everybody!

      -Rocco, IV since 2005, Ipi responder.

    Viewing 5 reply threads
    • Replies
        • January 21, 2013 at 1:48 am
        awillett1991
        Participant
          Whoa! Just read your profile and I’m amazed at the eye issues caused by Ipi, and also that it could be linked to thyroid. I finished Ipi #4 6/12 weeks ago. As soon as I started got iritis and also had thyroid goiters overactive (thus hyperthyroid) with a TSH of .053 but freeT4 only slightly above normal. Hot all the time, exhausted, felt like crap. i think after round 4, free T4 did go to about 1.5 over normal but by then entire rt side is visually swollen, lighting up PET and lymph tissue. Went on steroids for liver problems, now tapering off and darn if iritis isn’t back and thyroid is swelling as I taper down. Eye dr hasn’t heard of yervoy, onc isn’t concerned about thyroid, says Ipi induced, edo workup says I’m not hyperthyroid enough to cause any problems. Do you have any advice?
            • January 21, 2013 at 2:45 pm
            Rocco
            Participant

              Hi!

              During the Ipi (MDX trial) days, it was suggested that if I had been even predisposed to Hyperthyroidism or  Graves disease, ipi taking the breaks off the immune system might have triggered it.  Who really knows as it's all experimental, right?  I had swelling of the eye muscles which were in keeping with Graves disease symptoms.  After quite a few months of steroids, the eyes were back to normal and so was the thyroid (as of summer 2012)

              My Opthalmologists hadn't heard of ipi (Yervoy) back in 2009, so it was trial and error to get the steroid dosage right, etc.  I believe DFCI in Boston recommended a few other Ipi patients to them after me.  This group also specializes in Uveitis.  You may want to have your Opthamologist/eye dr. call them referencing both Yervoy and Ipilimumab to compare diagnosis and treament.

              MERSI (Mass Eye Research and Surgery Instituion), 5 Cambridge Center, 8th Floor, Cambridge, MA  02142.  (617) 621-6577.  http://www.uveitis.org  or http://www.mersi.com.   Dr. C. Stephen Foster, MD, F.A.C.S, F.A.C.R   is the Ocular Immunology and Uveitis Foundation Founder and President.

              Hope some of this helps!

              HANG IN THERE!

              -Rocco, Stage IV since 2005, Ipi responder

              • January 21, 2013 at 2:45 pm
              Rocco
              Participant

                Hi!

                During the Ipi (MDX trial) days, it was suggested that if I had been even predisposed to Hyperthyroidism or  Graves disease, ipi taking the breaks off the immune system might have triggered it.  Who really knows as it's all experimental, right?  I had swelling of the eye muscles which were in keeping with Graves disease symptoms.  After quite a few months of steroids, the eyes were back to normal and so was the thyroid (as of summer 2012)

                My Opthalmologists hadn't heard of ipi (Yervoy) back in 2009, so it was trial and error to get the steroid dosage right, etc.  I believe DFCI in Boston recommended a few other Ipi patients to them after me.  This group also specializes in Uveitis.  You may want to have your Opthamologist/eye dr. call them referencing both Yervoy and Ipilimumab to compare diagnosis and treament.

                MERSI (Mass Eye Research and Surgery Instituion), 5 Cambridge Center, 8th Floor, Cambridge, MA  02142.  (617) 621-6577.  http://www.uveitis.org  or http://www.mersi.com.   Dr. C. Stephen Foster, MD, F.A.C.S, F.A.C.R   is the Ocular Immunology and Uveitis Foundation Founder and President.

                Hope some of this helps!

                HANG IN THERE!

                -Rocco, Stage IV since 2005, Ipi responder

                • January 21, 2013 at 6:57 pm
                awillett1991
                Participant
                  Ths is very helpful. Thanks Rocco. I’m wondering if I shouldn’t push to find out who at Vandy Eye Institute has dealt with Yervoy patients, as well as lean on my onc more about the thyroid nodules. It’s always something. Good luck with your thyroid, at least that’s one of those “optional” parts. Ugh.

                  Amy

                  • January 21, 2013 at 6:57 pm
                  awillett1991
                  Participant
                    Ths is very helpful. Thanks Rocco. I’m wondering if I shouldn’t push to find out who at Vandy Eye Institute has dealt with Yervoy patients, as well as lean on my onc more about the thyroid nodules. It’s always something. Good luck with your thyroid, at least that’s one of those “optional” parts. Ugh.

                    Amy

                    • January 21, 2013 at 6:57 pm
                    awillett1991
                    Participant
                      Ths is very helpful. Thanks Rocco. I’m wondering if I shouldn’t push to find out who at Vandy Eye Institute has dealt with Yervoy patients, as well as lean on my onc more about the thyroid nodules. It’s always something. Good luck with your thyroid, at least that’s one of those “optional” parts. Ugh.

                      Amy

                      • January 21, 2013 at 2:45 pm
                      Rocco
                      Participant

                        Hi!

                        During the Ipi (MDX trial) days, it was suggested that if I had been even predisposed to Hyperthyroidism or  Graves disease, ipi taking the breaks off the immune system might have triggered it.  Who really knows as it's all experimental, right?  I had swelling of the eye muscles which were in keeping with Graves disease symptoms.  After quite a few months of steroids, the eyes were back to normal and so was the thyroid (as of summer 2012)

                        My Opthalmologists hadn't heard of ipi (Yervoy) back in 2009, so it was trial and error to get the steroid dosage right, etc.  I believe DFCI in Boston recommended a few other Ipi patients to them after me.  This group also specializes in Uveitis.  You may want to have your Opthamologist/eye dr. call them referencing both Yervoy and Ipilimumab to compare diagnosis and treament.

                        MERSI (Mass Eye Research and Surgery Instituion), 5 Cambridge Center, 8th Floor, Cambridge, MA  02142.  (617) 621-6577.  http://www.uveitis.org  or http://www.mersi.com.   Dr. C. Stephen Foster, MD, F.A.C.S, F.A.C.R   is the Ocular Immunology and Uveitis Foundation Founder and President.

                        Hope some of this helps!

                        HANG IN THERE!

                        -Rocco, Stage IV since 2005, Ipi responder

                      • January 21, 2013 at 1:48 am
                      awillett1991
                      Participant
                        Whoa! Just read your profile and I’m amazed at the eye issues caused by Ipi, and also that it could be linked to thyroid. I finished Ipi #4 6/12 weeks ago. As soon as I started got iritis and also had thyroid goiters overactive (thus hyperthyroid) with a TSH of .053 but freeT4 only slightly above normal. Hot all the time, exhausted, felt like crap. i think after round 4, free T4 did go to about 1.5 over normal but by then entire rt side is visually swollen, lighting up PET and lymph tissue. Went on steroids for liver problems, now tapering off and darn if iritis isn’t back and thyroid is swelling as I taper down. Eye dr hasn’t heard of yervoy, onc isn’t concerned about thyroid, says Ipi induced, edo workup says I’m not hyperthyroid enough to cause any problems. Do you have any advice?
                        • January 21, 2013 at 1:48 am
                        awillett1991
                        Participant
                          Whoa! Just read your profile and I’m amazed at the eye issues caused by Ipi, and also that it could be linked to thyroid. I finished Ipi #4 6/12 weeks ago. As soon as I started got iritis and also had thyroid goiters overactive (thus hyperthyroid) with a TSH of .053 but freeT4 only slightly above normal. Hot all the time, exhausted, felt like crap. i think after round 4, free T4 did go to about 1.5 over normal but by then entire rt side is visually swollen, lighting up PET and lymph tissue. Went on steroids for liver problems, now tapering off and darn if iritis isn’t back and thyroid is swelling as I taper down. Eye dr hasn’t heard of yervoy, onc isn’t concerned about thyroid, says Ipi induced, edo workup says I’m not hyperthyroid enough to cause any problems. Do you have any advice?
                          • January 22, 2013 at 4:59 am
                          King
                          Participant

                            Hi Rocco,

                             

                            Thanks for the update.  I'm sorry you are dealing with yet another issue but it sounds like you are in good hands (good docs).  Keep us posted.  It never fails to amaze me how much we can learn from one another on this board (and have one doc educate another as well).

                            Take care.  One day at a time.

                            Stay Strong
                            King

                            Stage IV 7/05  Liver mets

                            • January 22, 2013 at 4:59 am
                            King
                            Participant

                              Hi Rocco,

                               

                              Thanks for the update.  I'm sorry you are dealing with yet another issue but it sounds like you are in good hands (good docs).  Keep us posted.  It never fails to amaze me how much we can learn from one another on this board (and have one doc educate another as well).

                              Take care.  One day at a time.

                              Stay Strong
                              King

                              Stage IV 7/05  Liver mets

                              • January 22, 2013 at 4:59 am
                              King
                              Participant

                                Hi Rocco,

                                 

                                Thanks for the update.  I'm sorry you are dealing with yet another issue but it sounds like you are in good hands (good docs).  Keep us posted.  It never fails to amaze me how much we can learn from one another on this board (and have one doc educate another as well).

                                Take care.  One day at a time.

                                Stay Strong
                                King

                                Stage IV 7/05  Liver mets

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