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Pituitary progress after hypophysitis
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Pituitary progress after hypophysitis

› Forums › General Melanoma Community › Pituitary progress after hypophysitis

  • Post
    • April 18, 2019 at 4:52 am
    MovingOn
    Participant

      I’ve read about some folks getting their entire pituitary function back after immunotherapy induced hypophysitis, yet most do not get this function back. Wanted to give an update on my anecdotal experience. My pituitary stopped sending signals for Thyroid (TSH), Testosterone, and cortisol two years ago while at my 3rd dose of 10mg/kg of yervoy. Since then my TSH has recovered to normal. It was zero for about a year and then spiked higher than normal followed by settling in to the normal range it had been prior to yervoy. Next my testosterone recovered to a level 20% below the normal value for my age, but it had been near zero when hypophysitis hit. So I’ve continued the testosterone cream and will most likely stay on this for life.

      Finally Is like to mention my cortisol production. It is still at zero (unmeasurable by tests). I wish this would come back because even hydrocortisone is short acting and I need to take multiple doses throughout the day. But it does seem like this aspect of hypophysitis is permanent so far. 

       

      So I guess what I’m saying is that based on my anecdotal experience anyone experiencing hypophysitis from yervoy May be able to regain thyroid function eventually, testosterone could be your own choice after initial supplementation, but cortisol may not recover and is a life threatening situation to take seriously.

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        • April 18, 2019 at 12:48 pm
        Hukill
        Participant

          Yervoy took out my thyriod after I completed the combo, that was November of 2016. Still not working.

          • April 19, 2019 at 5:12 pm
          MarkR
          Participant

            Interesting post – mine was hit by Ipi/Nivo in May last year but had liver issues at the same time.  Just started seeing an endocrinologist (long story on the delay) and having tests on functionality now as he thinks some of it may still be working.  Will have to wait and see but as I told him – I’m not that worried if it doesn’t work just want to be Melanoma free!!

            Mark

            • April 21, 2019 at 6:24 am
            kylez
            Participant

              Glad some of your other pituitary functions are coming back online. 

              I got hit by hypophysitis with the combo too, but just ACTH deficiency, in September, so no cortisol. I was gradually on my way to an adrenal crisis, but not quite. So far cortisol is still zero, get tested again in a month. I imagine that if I start getting moon-faced, then maybe my pituitrary ACTH came back online but the ACTH stim test results also showed the adrenals were atrophied for cortisol production, due presumably to disuse from the pit not signaling them, so that would be 2 things to come back online.

              I take 15/5 mg hydrocortisone when I get up and then at 4pm which seems to work well enough for me, the right dose must be an indivual thing. It definitely helps with arthritis in my knee, so that's one on the plus side.

              • April 22, 2019 at 4:33 pm
              casagrayson
              Participant

                I'm not the melanoma patient, but at Cushing's patient with adrenal insufficiency.  Hydrocortisone is used to replace cortisol because it more closely resembles the body's natural production (and that's why multiple doses during the day are needed).  Your cortisol levels are normally highest at about 8am, and gradually decline until they are near zero at midnight.  Most people who are hypopit or have had their adrenal glands removed feel best at a near-physiological dose of 15/5mg to 20/10mg.  Every person is different, however.  Some doctors try to force the pituitary to "wake up" by keeping hydro doses as a minimal level — but this often leads to adrenal crisis and makes the patient feel like they've been over by a truck.  Nausea, body aches, headache — all of those are signs of low cortisol.  Add vomiting, diarrhea, or cognitive dysfunction and you are in crisis.  THAT is a life-threatening emergency.  If you don't have an emergency injectable kit with Solu-Cortef, I suggest you get one.  1) most EMTs do not have solu-cortef on board, 2) most ER docs don't like to treat for adrenal insufficiency before doing labs, and time is of the essence.  Better to inject and THEN go to the ER for monitoring of electrolytes and fluid support.

                I would suggest bumping your dosage to 20/5 if you are feeling awful, and see if that makes a difference.

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