Wednesday, October 5, 2011

Have I earned treatment?

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.


  1. This post just raised my blood pressure! My heart goes out to you because I have been there and done that! Mine was with thyroid cancer(s). Yes, two types for that matter. Why in the world, as patients, do we need to prove we have a certain illness when a doctor has already diagnosed us? All of this just proves to me that the medical profession might as well be using darts to make a diagnoses. We the dart board get ready. They..the doctors...close their eyes, pick up the dart and throw. Where oh where does the diagnoses come out...depends on their dart throwing skills. But because one patient can get so many different opinions of what it just goes to show you that medicine is in fact part art of diagnosing. Run if you have to and run fast! The clock is ticking and my heart is beating...waiting right there with you and waiting to see what happens. (((HUGS))). Stay strong. Go with what YOU know is right for YOUR body!

  2. One word: liability. It's self-preservation for them to cover their ass. The dirty secret is that the doctor always comes first before the patient. Oh, they like to *think* they put the patient first. But when was the last time a doctor stuck their neck out? When that happens, they make a movie out of it.

    I don't mind them re-doing the tests. That totally makes sense to me. Just because someone hung a sign that says "horse" doesn't mean the sign is *actually* hanging on a real horse.

    What I *DON'T* like is contempt prior to investigation. The idea that something must not be true just because someone else said it. Um... so the sky can't be blue because other people have said it's blue? How does that work??

    The endocrinologist I was with in Seattle did it right. She said, "Okay, I see you have these diagnoses. I just want to make sure this is what's going on and that we haven't missed anything. So I'm going to re-order these tests, and while we're at it, let's check your thyroid, prolactin..." etc. Hell, that's how we *caught* my thyroid problem, and that it wasn't just all adrenal.

    This new doc might turn around. I've had that happen too. And *sometimes* when they turn around, they then become some of the best health partners I've had. I can only dream...

    Heh... finding a good DOCTOR is like blind-throwing darts at a board. Where, oh where is a doctor with good customer service skills? lol

    Thanks for cheering me on. I know you know how difficult and frustrating this is.