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Panhypopituitarism Introduction
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<blockquote data-quote="MAV6" data-source="post: 112015" data-attributes="member: 18723"><p>Hi there! Nelson suggested that I post here instead of on Facebook.</p><p></p><p>I have "panhypopituitarism." I realize this is rare. I produce nothing from my pituitary. I had a pituitary adenoma that was called a "prolactinoma." After it was surgically removed (endoscopic endonasal approach), and a very extended period of time on cabergoline, I did not recover my hormonal levels.</p><p></p><p>For the record, the tumor is gone. However, it apparently permanently damaged my pituitary gland.</p><p></p><p>I've had just about every test you can think of. I've had dexamethasone suppression, cosyntropin stimulation, glucagon stimulation, insulin tolerance testing, multiple pituitary MRIs with contrast, 24 hour urine cortisol, water deprivation testing, the list goes on and on.</p><p></p><p>I have diabetes insipidus because I don't produce ADH (vasopressin), secondary adrenal insufficiency, secondary hypogonadism, hypothyroidism, growth hormone deficiency, and now we're actually looking at my aldosterone and angiotensin II levels as well, so there's still some ongoing testing. I also have developed some other conditions like osteopenia, polyuria where I produce 6-8 liters of urine per day and frequently end up in the ER with hypernatremia, and some kind of GI disorder where I have diarrhea 40-60 times a day. Those are likely from the hormone deficiencies and should resolve when I start hormone replacement.</p><p></p><p>As far as I understand right now, things like clomiphene monotherapy are not options for me even though I would like to maintain fertility to have kids since my pituitary will not produce LH and FSH even with stimulation. I'm in my early 30s, and my girlfriend and I have plans to get married this year. I was really looking forward to starting a family, but I understand that may not be an option. Maybe we'll adopt?</p><p></p><p>I am scheduled to start training with Omnitrope. So, in the very near future, I will be on testosterone cypionate at 100 mg a week, 2 IU of Omnitrope per day, 10 mg of hydrocortisone AM and another 5 mg PM, desmopressin nasal spray, and I will be placed on T4 and T3 since my thyroid function is also low.</p><p></p><p>I think that covers it without getting too long winded.</p><p></p><p>Things I'm wondering about: since I don't produce LH, what do you do about things like DHEA, pregnenolone, etc? It doesn't seem that they replace those things. I realize that DHEA is available as an OTC supplement, but it doesn't appear to be prescribed for patients with pituitary disorders.</p><p></p><p>This is all VERY new to me. I was diagnosed with panhypopituitarism on June 1, 2018, so I'm trying to learn as much as I can as fast as I can. I'd really appreciate any insight from anyone else who has this condition since it's been hard to find other people with panhypopituitarism.</p></blockquote><p></p>
[QUOTE="MAV6, post: 112015, member: 18723"] Hi there! Nelson suggested that I post here instead of on Facebook. I have "panhypopituitarism." I realize this is rare. I produce nothing from my pituitary. I had a pituitary adenoma that was called a "prolactinoma." After it was surgically removed (endoscopic endonasal approach), and a very extended period of time on cabergoline, I did not recover my hormonal levels. For the record, the tumor is gone. However, it apparently permanently damaged my pituitary gland. I've had just about every test you can think of. I've had dexamethasone suppression, cosyntropin stimulation, glucagon stimulation, insulin tolerance testing, multiple pituitary MRIs with contrast, 24 hour urine cortisol, water deprivation testing, the list goes on and on. I have diabetes insipidus because I don't produce ADH (vasopressin), secondary adrenal insufficiency, secondary hypogonadism, hypothyroidism, growth hormone deficiency, and now we're actually looking at my aldosterone and angiotensin II levels as well, so there's still some ongoing testing. I also have developed some other conditions like osteopenia, polyuria where I produce 6-8 liters of urine per day and frequently end up in the ER with hypernatremia, and some kind of GI disorder where I have diarrhea 40-60 times a day. Those are likely from the hormone deficiencies and should resolve when I start hormone replacement. As far as I understand right now, things like clomiphene monotherapy are not options for me even though I would like to maintain fertility to have kids since my pituitary will not produce LH and FSH even with stimulation. I'm in my early 30s, and my girlfriend and I have plans to get married this year. I was really looking forward to starting a family, but I understand that may not be an option. Maybe we'll adopt? I am scheduled to start training with Omnitrope. So, in the very near future, I will be on testosterone cypionate at 100 mg a week, 2 IU of Omnitrope per day, 10 mg of hydrocortisone AM and another 5 mg PM, desmopressin nasal spray, and I will be placed on T4 and T3 since my thyroid function is also low. I think that covers it without getting too long winded. Things I'm wondering about: since I don't produce LH, what do you do about things like DHEA, pregnenolone, etc? It doesn't seem that they replace those things. I realize that DHEA is available as an OTC supplement, but it doesn't appear to be prescribed for patients with pituitary disorders. This is all VERY new to me. I was diagnosed with panhypopituitarism on June 1, 2018, so I'm trying to learn as much as I can as fast as I can. I'd really appreciate any insight from anyone else who has this condition since it's been hard to find other people with panhypopituitarism. [/QUOTE]
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