› Forums › General Melanoma Community › If it isn’t hypophysitis…
- This topic has 12 replies, 4 voices, and was last updated 10 years ago by
Kim K.
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- August 16, 2014 at 3:24 am
After 2 3mg/K ipi infusions, a toxic immune related Adverse Event, 2 infusions of Remicade, massive doses of Prednisone, orthostatic hypotension due to adrenal gland insufficiency, massive headaches for several months, convergence (vision) problems (the oculomotor nerve crosses behind the pituitary gland), I'm told I don't have hypophysitis. My adrenal gland responds to ACTH when it's administered. When the endocrinologist takes me off the 5 mg Prednisone and 0.1mg fludrocortisone, I'm exhausted by early afternoon after taking things easy. I'm back on the Prednisone and fludrocortisone. The ophthalmologist has given me eye exercises to see if I can improve my vision without the use of prism lenses. My internist doubled my synthroid. And I'm still told I don't have hypophysitis. My husband says it's all in my head. He's trying to be funny.
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- August 16, 2014 at 3:45 pm
It sure sounds like hypophysitis to me. It is my understanding that in immune related hypophysitis the adrenal glands function normally but the pituitary doesn't produce the ACTH to signal the adrenal gland to produce Cortisol (so if your adrenal glands are stimulated with ACTH they will produce Cortisol). Is your Cortisol level low off medications. I believe you are in a trial but does your doc (both oncologist and endocriologist) have experience with Ipi induced hypophysitis. I believe the numbers being reported from theadjuvant trials is something like 20% of patients are getting hypophysitis but there still isn't a lot of experience out there in dealing with it.
Perhaps a second opinion might be helpful
Kate
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- August 16, 2014 at 7:50 pm
Thank you Kate. BTW, the all in my head remark from my husband is because my metastic melanoma was in my paritod gland and like the the pituitary gland they're both in in my head.
In retrospect I realize that while I was hospitalized [Oktoberfest], the intern (1st year resident) and resident (2nd year) were looking for signs of hypophysitis. I was a "zebra" among horses and they both gave me a lot of attention. I was told the massive doses of prednisone I took for the colitis may have knocked out my adrenal glands. I read that some of the side effects of yervoy may take a while to surface. I think the yervoy got to the pituitary later on, after I had been home for about a month. That's when the headaches started as the prednisone was being reduced.
I guess I'm not alone in how I feel but I feel almost traitorous thinking about going somewhere else for a second opinion. I'm wondering if there is a hypophysitis center somewhere that can deal with my concerns.
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- August 16, 2014 at 7:50 pm
Thank you Kate. BTW, the all in my head remark from my husband is because my metastic melanoma was in my paritod gland and like the the pituitary gland they're both in in my head.
In retrospect I realize that while I was hospitalized [Oktoberfest], the intern (1st year resident) and resident (2nd year) were looking for signs of hypophysitis. I was a "zebra" among horses and they both gave me a lot of attention. I was told the massive doses of prednisone I took for the colitis may have knocked out my adrenal glands. I read that some of the side effects of yervoy may take a while to surface. I think the yervoy got to the pituitary later on, after I had been home for about a month. That's when the headaches started as the prednisone was being reduced.
I guess I'm not alone in how I feel but I feel almost traitorous thinking about going somewhere else for a second opinion. I'm wondering if there is a hypophysitis center somewhere that can deal with my concerns.
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- August 16, 2014 at 7:50 pm
Thank you Kate. BTW, the all in my head remark from my husband is because my metastic melanoma was in my paritod gland and like the the pituitary gland they're both in in my head.
In retrospect I realize that while I was hospitalized [Oktoberfest], the intern (1st year resident) and resident (2nd year) were looking for signs of hypophysitis. I was a "zebra" among horses and they both gave me a lot of attention. I was told the massive doses of prednisone I took for the colitis may have knocked out my adrenal glands. I read that some of the side effects of yervoy may take a while to surface. I think the yervoy got to the pituitary later on, after I had been home for about a month. That's when the headaches started as the prednisone was being reduced.
I guess I'm not alone in how I feel but I feel almost traitorous thinking about going somewhere else for a second opinion. I'm wondering if there is a hypophysitis center somewhere that can deal with my concerns.
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- August 16, 2014 at 3:45 pm
It sure sounds like hypophysitis to me. It is my understanding that in immune related hypophysitis the adrenal glands function normally but the pituitary doesn't produce the ACTH to signal the adrenal gland to produce Cortisol (so if your adrenal glands are stimulated with ACTH they will produce Cortisol). Is your Cortisol level low off medications. I believe you are in a trial but does your doc (both oncologist and endocriologist) have experience with Ipi induced hypophysitis. I believe the numbers being reported from theadjuvant trials is something like 20% of patients are getting hypophysitis but there still isn't a lot of experience out there in dealing with it.
Perhaps a second opinion might be helpful
Kate
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- August 16, 2014 at 3:45 pm
It sure sounds like hypophysitis to me. It is my understanding that in immune related hypophysitis the adrenal glands function normally but the pituitary doesn't produce the ACTH to signal the adrenal gland to produce Cortisol (so if your adrenal glands are stimulated with ACTH they will produce Cortisol). Is your Cortisol level low off medications. I believe you are in a trial but does your doc (both oncologist and endocriologist) have experience with Ipi induced hypophysitis. I believe the numbers being reported from theadjuvant trials is something like 20% of patients are getting hypophysitis but there still isn't a lot of experience out there in dealing with it.
Perhaps a second opinion might be helpful
Kate
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- August 17, 2014 at 2:17 am
Jogo,
I assume they are basing that off of the MRI scans? As far as I know that's the only way to positively diagnose hypohysitis but I could be wrong. What was the timing of your scans related to the occurence of your symptoms? I know in my case I had headaches for about 10 days when I got my first scan and they didn't see any enlargement at that time but then a couple weeks after that I had a scan where they did see enlargment of the pituitary. I know in my case as soon as I took the prescribed 60mg of prednisone the headaches were gone in about 2 hours. Have you been on that much prednisone or more and still had the headaches? Sure does sound like hypophysitis.
Brian
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- August 17, 2014 at 2:17 am
Jogo,
I assume they are basing that off of the MRI scans? As far as I know that's the only way to positively diagnose hypohysitis but I could be wrong. What was the timing of your scans related to the occurence of your symptoms? I know in my case I had headaches for about 10 days when I got my first scan and they didn't see any enlargement at that time but then a couple weeks after that I had a scan where they did see enlargment of the pituitary. I know in my case as soon as I took the prescribed 60mg of prednisone the headaches were gone in about 2 hours. Have you been on that much prednisone or more and still had the headaches? Sure does sound like hypophysitis.
Brian
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- August 17, 2014 at 2:17 am
Jogo,
I assume they are basing that off of the MRI scans? As far as I know that's the only way to positively diagnose hypohysitis but I could be wrong. What was the timing of your scans related to the occurence of your symptoms? I know in my case I had headaches for about 10 days when I got my first scan and they didn't see any enlargement at that time but then a couple weeks after that I had a scan where they did see enlargment of the pituitary. I know in my case as soon as I took the prescribed 60mg of prednisone the headaches were gone in about 2 hours. Have you been on that much prednisone or more and still had the headaches? Sure does sound like hypophysitis.
Brian
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- August 19, 2014 at 6:58 pm
Hypophysitis has been diagnosed long before the invention of MRIs. That being said, bloodwork can also diagnose the problem.
Since the pituitary is the "master control" for a multitude of hormones, it can be challenging to diagnose, but not impossible. An excellent endocrinologist who has dealt with Yervoy and other autoimmune triggered complexes should have no problem with it. That being said, just because you are "normal" one week doesn't mean you are normal now.
IMHO – it looks like a duck, quacks like a duck, and swims like one to. Don't take no for an answer, keep pressing on to deal with your problems until someone figures it out.
Best of luck, sucks with all those symptoms and I hope they get to the bottom of it so you can feel better.
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- August 19, 2014 at 6:58 pm
Hypophysitis has been diagnosed long before the invention of MRIs. That being said, bloodwork can also diagnose the problem.
Since the pituitary is the "master control" for a multitude of hormones, it can be challenging to diagnose, but not impossible. An excellent endocrinologist who has dealt with Yervoy and other autoimmune triggered complexes should have no problem with it. That being said, just because you are "normal" one week doesn't mean you are normal now.
IMHO – it looks like a duck, quacks like a duck, and swims like one to. Don't take no for an answer, keep pressing on to deal with your problems until someone figures it out.
Best of luck, sucks with all those symptoms and I hope they get to the bottom of it so you can feel better.
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- August 19, 2014 at 6:58 pm
Hypophysitis has been diagnosed long before the invention of MRIs. That being said, bloodwork can also diagnose the problem.
Since the pituitary is the "master control" for a multitude of hormones, it can be challenging to diagnose, but not impossible. An excellent endocrinologist who has dealt with Yervoy and other autoimmune triggered complexes should have no problem with it. That being said, just because you are "normal" one week doesn't mean you are normal now.
IMHO – it looks like a duck, quacks like a duck, and swims like one to. Don't take no for an answer, keep pressing on to deal with your problems until someone figures it out.
Best of luck, sucks with all those symptoms and I hope they get to the bottom of it so you can feel better.
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