I was good. I was compliant. I went on less prednisone. I suffered the expected complications. Now the test results have come back and my doctor has struck out. My adrenal glands were supposed to double their output. They only increased output by 30%. That, with the other tests, is proof positive of my pituitary disease. The BIG question now is, will my doctor change her tune? Will she admit I was right?
I'm surprised. I expected my cortisol stim test to come three months from now. I was supplied three months of lower-dose prednisone. I have a sneaking suspicion this is because she expected to be able to take me off my prednisone. I suspect she was assuming she had to be right. I really hope she doesn't react poorly to the egg on her face.
I'm hopeful she'll now be able listen and provide care. But if she already sees me as a "problem patient," I may be screwed out of care regardless of proof. It's happened to me before. This time I kept my mouth shut. I let her have her beliefs. I went through the tests as she asked. But I did lay the groundwork for my back-up plan. Hope for the best; plan for the worst.
I've been in contact with the hospital administration. I've been very polite in expressing my displeasure. I was conservative in my protests about the unreturned phone calls and lost orders. The administration is going to make sure that I get contacted in a timely manner. I said 72 hours after the test results are posted. They agreed that's completely reasonable. I expressed my concern about not being believed, and the possibility of switching to a different doctor if this doesn't work out. They're on standby in case this goes south.
But I want to give my doctor a chance. I want to give her the opportunity to correct her mistakes. I don't need my doctors to be right all the time. That's unrealistic! But I do expect them to follow the evidence. I do expect them to change their theories to fit the facts. if she does that, I'm good. If she doesn't... Well, then it's time to vote with my feet.
The thing I'm worried about is that most endocrinologists, to their own admission, don't know how to deal well with pituitary issues; they're relatively rare. When it comes to my disease, the neuroendocrinologist has the technical skills and training I need. Finding someone else who can handle my disease is going to be tricky. And I fear trying to find a doctor at the same hospital may be drawing water from an already poisoned well. I know doctors, nurses and staff gossip about their patients. It's a possibility an in-house switch would do me no good.
These are the possibilities for the future I see: the good, the bad, and the ugly. But regardless of the outcome, I'll continue to work my way back to wellness with the best attitude I can muster. It's just a question of how much work that's gonna take.
Time to stop worrying about it. The clock is ticking. She has 72 hours starting from noon today (11am, really, but what's an hour between friends?). Until then, I will occupy myself with other interests.
Cross your fingers for me.
[Edited to add, March 8, 2012]
Nope.... never did earn treatment. Flying back to my old endocrinologist in Seattle.