I was first diagnosed by a Cardiologist in California who was looking for the exact *opposite* result in my bloodwork, because we were looking for causes of tachycardia. That was reaffirmed by an Endocrinologist who DID NOT believe I had what the Cardiologist found. My adrenal glands shut down in the presence of the stimulating hormone. I wasn't just low, my Adrenal Glands responded in a way that they should not. Additionally, he also didn't think my pituitary was involved, but agreed to test it because, and I quote, "I was wrong the first time!!"
I remember at first, I didn't want to be on prednisone, and voluntarily took myself off it for a month, but my endocrinologist showed the labs to me. She said you need to be on prednisone in no uncertain terms, and if not, you're risking your life. This was after all nerve blocks to try and control my migraines had ended, when I was receiving care in Everett Washington, before I had any pain relief from the headache clinic.
It was reaffirmed in Seattle again when I moved south and picked up a new Endocrinologist. There was a time under her care when I knew I was over-medicated, too, and again, voluntarily came off my prednisone. This time, however, the labs came back normal. It was then that we scheduled me for the neuroendocrinologist, or what I like to call a specialist to the third power (or specialist3) because you have to go through two layers of doctors to reach this guy. We knew that there was really only two reasons for hypopituitarism to go away: 1 - childbirth (and I've never been pregnant, even when trying - a clue itself) and 2 - autoimmune.
We had an MRI taken in this time, right as I began to get symptomatic again: I was nearly fainting after standing and just taking a few steps. This was a harsher version of when I first showed symptoms, when I was nealy blacking out from climbing two sets of stairs. Stair-master exercise machines were the worst. Just a few seconds on the machine, and my vision would tunnel, colorful or black & white spots would appear in my vision, and my whole body would start to go limp. This time, just three steps would bring me to my knees. The MRI came back "dirty" --- there was clear indication of lymphocytic invasion of both my pituitary gland and stalk. We finally had our smoking gun.
Why these people don't want to believe me now is baffling, but I need to stand my ground. I see my new GP next week, and hopefully she'll take over prescribing my prednisone, because my old GP refuses. How they can look at an abnormal result and prior evidence as to the cause of these abnormal results and say, "Nah, you can come off all your medication and you'll be fine!" is criminal to me. To threaten my life in that way boggles my mind.
I had reduced my medication the past few days to see if I could go off long enough to be able to have the tests show this again, but when I woke up this morning and my left leg didn't work, I decided against this course of action. It was the strangest thing. It wasn't "pins and needles" as you would feel if you'd lost circulation that way. No, there was just no feeling, and if I tried to put weight on it, I just fell. It collapsed underneath me. It was the most terrifying experience I've had to date.
I need to be at my medically best when I see this new GP. I have a new symptom which warrants extreme concern. I am not a happy camper at all. I am not well, but we can figure this out and manage it. However, I need physicians who are on my side and helping me search for answers, rather than denying the reality that is in front of them and placing obstacles in my way!
Since it's not kidneys, there should be something we can do to manage the fatigue. Since I'm experiencing new debilitating symptoms, we need to look at what else is going on in my body.
HEAVENS WORK WITH ME, PLEASE!
All I want to do is be a constructive member of society. Is that too much* to ask?
*Yes, quite possibly.
These medical bullies need to get gone.