Jan 19, 2012

The one where I play House, MD. (and it doesn't go well)

Throughout the past few years, while I've been fighting the mystery illness, the only doctor I've felt has been on my side has been my psychiatrist.

I find it ironic that the only physician to advocate a physiological explanation for my symptoms is my psychiatrist, while the internal medicine specialists have brushed me off and made me feel like:

a) a hypochondriac
b) a malingerer
c) suffering from a conversion disorder,
d) I'm wasting their time.

So it pains me that during my last appointment with the doctor I trust the most, I pushed too far and took his comments way too personally.

I've been feeling a lot better since my thyroid medication was increased, but still, not well enough to return to school or even go for a long walk.

I am frustrated beyond belief and have made it my mission to diagnose myself. You see, my thinking is that if I don't do the legwork, and something gets missed, I'm the one who will live with the consequences.

It's not good enough for me to know that my thyroid is suddenly tanking again. I want to know "Why??"

With my ANA still sitting at a hard-to-brush-off 1:640, I am looking for clues to what's going on in my body.

I've been told the most likely culprit is Hashimoto's, but a test of thyroid auto-antibodies came back negative.

So I asked if there was any chance my symptoms could be pituitary. I've looked into adult growth hormone deficiency and the symptoms all fit. Apparently, a 2007 study found that people with thyroid disorders have a reasonable chance of having anti-pituitary antibodies.

This theory would describe my high positive ANA and the symptoms of crushing fatigue and periodic depression.

So when he looked at me warily and told me I was taking this too far, I felt like I was losing my only ally.

After seeing tears start bursting from me, he told me that he would look into my theory with a growth hormone test (but not the stimulation test; which I understand is the 'gold standard). He promised he would stick with me, but I feel like I've pushed the relationship too far by coming up with a far-out medical hypothesis.

He assured me that such a disorder would be very rare. But then again, I argued, so is WPW, so is Factor V Leiden, so is Malignant Hyperthermia - but being rare hasn't stopped me before from being diagnosed with some uncommon disorders.

The appointment ended with me in tears and him looking frustrated and saddened. I'm not sure where to go from here.

Do I apologize?
Do I send him a card and thank him for his support?
Do I just wait until my next appointment and bring it up then?

I feel alone on this journey and I'm afraid I've lost the support of the only doctor willing to travel it along with me.


  1. You did nothing wrong. I know Dr. Friedman in San Francisco has written that he sees Growth Hormone deficiency rather commonly.

    I hope your doc realizes he's certainly not going to find any answers by refusing tests and theories. Especially if he really does realize it's physiological.

    Also, you haven't lost his support, you've challenged his medical foundation. Two different things. I hope he mans up and gets it together.


  2. Thanks M,
    Looking back, I think his concern was that my hypothesis was too far out of his field of knowledge. After all, he is a psychiatrist, not an endocrinologist.

    He is a very kind man and I am thankful for everything he's done to keep me sane.

    Like I said, he did order a growth hormone test (just not the one I wanted). Fingers crossed that the results will give us something to follow up on.