Maggi315
12-13-2007, 10:12 PM
Hi,
I postedthe following on the endo boards about my problems with a pituitary tumor and the shutting down of my adrenals. But I am posting here because I need to do something about my sleep disorder. That's what started all of this, a sleep study. It showed that I woke up 116 times in 6 hours (not fully, just back up to 1), my restless legs were controlled with requip (they are horrible, I have to keep increasing that dosage and it makes me horribly nauseous) and I had minimal sleep apnea.
However, i feel like if i don't get some good quality restorative sleep, I am going to die. I am looking into all the possibilities: diet, allergies, meds, etc. So any help or ideas would be greatly appreciated. I tend to fall asleep OK, wake up several times during the night, but feel like i never really go into deep sleep and feel hung over and extreme brain fog al the next day!
Hi,
I havent' posted in awhile, I ended up in the hospital. No one would listen to me until finally when I got to the ER, I had no detectable cortisol and almost no detectable ACTH. They did the cortisyn stim test, which I failed and put my on hydrocortisone 10mg 3X day.
They were totally incompetent and drove me crazy, I'll have to go into more details later when I'm back to my old self.
anyway, we sought out a second opinion (well, more like 4th or 5th really) at Yale and finally got some answers.
Turns out size doesn't matter! (isn't that what we always say ladies, lol) but location. The endo up there told me I was very unlucky, because this tumor was directly in the area that control the cortisol and adrenal function. The damage is permanent.
My DHEA came back low, low Vit D., low B12, low ferritin, and and low Aldosterone (it was 3 in the am supine, how low is too low, not sure how bad that level is). So no wonder I feel like crap.
he said that we can no longer trust the pituitary and my thryoid medicine should be based on symptoms and I should add another 1/2 dose in the afternoon, which did seem to help today.
both the endo and the neurosurgeon agreed that surgery isn't a good idea, because the damage is permanent so surgery wouldn't fix anything and it is at the back of the pituitary and they would have to cut through the healthy gland and probably cause more damage.
They also mentioned that I must find someone who can help me get my sleep under control. During my sleep study I woke up 116 times in 6 hours, my restless legs were good on the requip and I had only minimal apnea. But the docs said if Idon't get quality sleep, I will continue with these horrible headaches and just feel horrible.
Also mentioned about my apparent malabsorption since I eat, keep gaining weight, but my blood work and clinical symptoms look like I am not absorbing anything. We did a celiac panel, it was negative, any ideas?
I guess that's it, just an update. Any ideas would be appreciated, I have learned so much about the endocrine system and the brain in the last few months. I am returning to school to be family nurse practitioner and take a pathophysiology course in january, I looked through the book and modules and I already have done most of these two systems, so that's a definite plus!
I am going to cross post this on the other forums since most people don't seem to come here.
thanks!
I postedthe following on the endo boards about my problems with a pituitary tumor and the shutting down of my adrenals. But I am posting here because I need to do something about my sleep disorder. That's what started all of this, a sleep study. It showed that I woke up 116 times in 6 hours (not fully, just back up to 1), my restless legs were controlled with requip (they are horrible, I have to keep increasing that dosage and it makes me horribly nauseous) and I had minimal sleep apnea.
However, i feel like if i don't get some good quality restorative sleep, I am going to die. I am looking into all the possibilities: diet, allergies, meds, etc. So any help or ideas would be greatly appreciated. I tend to fall asleep OK, wake up several times during the night, but feel like i never really go into deep sleep and feel hung over and extreme brain fog al the next day!
Hi,
I havent' posted in awhile, I ended up in the hospital. No one would listen to me until finally when I got to the ER, I had no detectable cortisol and almost no detectable ACTH. They did the cortisyn stim test, which I failed and put my on hydrocortisone 10mg 3X day.
They were totally incompetent and drove me crazy, I'll have to go into more details later when I'm back to my old self.
anyway, we sought out a second opinion (well, more like 4th or 5th really) at Yale and finally got some answers.
Turns out size doesn't matter! (isn't that what we always say ladies, lol) but location. The endo up there told me I was very unlucky, because this tumor was directly in the area that control the cortisol and adrenal function. The damage is permanent.
My DHEA came back low, low Vit D., low B12, low ferritin, and and low Aldosterone (it was 3 in the am supine, how low is too low, not sure how bad that level is). So no wonder I feel like crap.
he said that we can no longer trust the pituitary and my thryoid medicine should be based on symptoms and I should add another 1/2 dose in the afternoon, which did seem to help today.
both the endo and the neurosurgeon agreed that surgery isn't a good idea, because the damage is permanent so surgery wouldn't fix anything and it is at the back of the pituitary and they would have to cut through the healthy gland and probably cause more damage.
They also mentioned that I must find someone who can help me get my sleep under control. During my sleep study I woke up 116 times in 6 hours, my restless legs were good on the requip and I had only minimal apnea. But the docs said if Idon't get quality sleep, I will continue with these horrible headaches and just feel horrible.
Also mentioned about my apparent malabsorption since I eat, keep gaining weight, but my blood work and clinical symptoms look like I am not absorbing anything. We did a celiac panel, it was negative, any ideas?
I guess that's it, just an update. Any ideas would be appreciated, I have learned so much about the endocrine system and the brain in the last few months. I am returning to school to be family nurse practitioner and take a pathophysiology course in january, I looked through the book and modules and I already have done most of these two systems, so that's a definite plus!
I am going to cross post this on the other forums since most people don't seem to come here.
thanks!