Thursday, September 15, 2011

How do you tell a doctor you don't want to comply with their wishes?

My new doctor expected to show me how my claims for Autoimmune Hypophysitis were misguided. That hasn't happened. She told me that my AH was probably the fault of previous doctors giving me steroids when they didn't realize it, and that created the illusion of AH. She told me that my hypothyroidism was most likely primary autoimmune hypothyroidism, and that my swollen thyroid was evidence of that. One problem: the tests don't support any of her claims.

I do have hypothyroidism and I'm on the correct amount of medication for it. And the tests show that I'm not even borderline autoimmune thyroiditis. My results were less than *half* the minimum for a positive result. It's secondary hypothyroidism, not primary like she predicted. My thyroid problem is pituitary.

I have normal calcium, sodium, potassium, etc. My Vitamin D & B12 levels are fine. Nothing she claims to be really wrong with me has panned out. None of her predictions have come true. And now I don't want to continue with her suggested course of action. That's reasonable, right? But I don't know how to say "I don't wanna do that" without it being a challenge to her "authority."

She wants me to come off my prednisone. That seems like an extremely dangerous plan now. If my problems were not what I claimed, my adrenal glands should start to come back to life. But that's not terribly likely given the current evidence. What's more likely is that as I come off my prednisone, I'll start to get sicker and sicker, and eventually suffer an adrenal crash (which, alarmingly, can lead to coma and death). Um.... That's not something I'd like to risk just to prove a point that's already been proven by other doctors and labs.

The thing I worry about is if I say, "I'm not comfortable with this plan," she'll turn around and say, "I'm not comfortable treating you." It wouldn't be the first time.

I left a message for the doctor to call me.

[Edited to add (Mar, 3, 2012):]
The answer to my question is: you don't. They either mark you down as a non-compliant patient, which gives them grounds to stop treating you, or you vote with your feet and find a doctor that actually listens.


  1. What happens if she says she doesn't want to treat you anymore? I'm new to your story so I don't know how much trouble you've had finding someone who will work with you, but as far as I'm concerned we have a responsibility to ourselves to only do the things we feel comfortable with. A good doctor should respect that, but as we both know, often they don't. So I would encourage you to be as honest as possible even though I do understand the stakes can be high.

  2. If she turns me down for treatment, I'll have to look out of state for a neuroendocrinologist. There aren't many neuroendocrinologists out there, and they generally congregate in cities with high costs of living: Boston, New York, LA, Seattle, Chicago, Denver.

    I had one in Seattle, but it was *way* too expensive to live there after my divorce. I'd moved back home to St. Louis, only to discover they didn't have any pituitary experts locally. I have family in the Denver area, so I moved out here. But there's only one neuroendocrinologist in the whole state for adults.

    So... if she doesn't want to treat, I'm not sure what I'm going to do, honestly. Probably call my old neruoendo in Seattle and see what my options are...

  3. I feel for your situation. I'm lucky that although my Nurse and my Neuro and I don't agree on the drug course I should be taking they have always bowed (so far) to my wishes.

    I am a firm believer in patient wishes first; and patients knowing their own bodies better than anyone - shame not all medical professionals agree.

    Good luck.

  4. Thanks ^_^ I need all the good luck I can get.

    It's been an uphill struggle to get any of my doctors to believe me. I thought it was just me, but I hear from the medical professionals that work with doctors, and any with 20+ years experience all tell me: a doctor believes no one but his or herself.

    I'm just hoping this one is one who will change their theory to fit the facts, rather than charging bullheadedly forward despite facts.

  5. While I am all for being one's own advocate when it comes to health care, any prolonged use of glucosteroids or corticosteroids is exceptionally dangerous. Steroids suppress adrenal gland function. It takes roughly 1 week for ever 1 month you were treated with steroids for your body to take over. I was treated with incredibly high doses of medrol for roughly 10 months (135 mg- the highest possible dose- tapering at 50% every three weeks) and it took a long time for my body to bounce back. I had flaring symptoms as I tapered by my body took over eventually.
    While it is true that healthcare professionals work for us, we must also always remember that they are the ones with a medical degree. They really do have your best interests at heart. Sometimes as patients we think we know our bodies better, but there are people who have seen hundreds or thousands like us. Fight for your own health but try to avoid the sort of doubt that leads to complications. Those extreme side effects are only reached after long LONG periods of non-treatment. Stay safe and stay passionate:)

  6. My adrenal glands don't work in the first place. ^_^ That's why I'm on the steroids. It's replacing the cortisol I don't make naturally.

    I'm only on a replacement dose of 5mg daily. When I get sick or injured, I'm supposed to triple that.