Do I need my data ASAP to be an empowered e-Patient?

When I first googled "endocrine" and my symptoms after being told by my PCP that whatever it was I had was thus related, I found the Cushing's Help support group. It was with the input of the members of the support boards there I found out late-night serum cortisol was one way to test for Cushing's Disease. So, I convinced my PCP to order one for me. She did, but with the caveat "I don't know where you will get this done at that time of the night!". I did convince the large hospital lab to do it for me after calling various labs for two days.

When my PCP got the results, her nurse called with a "it's normal" (left on my voice mail). I didn't question them. Long story short, several months later the same CH support folks told me I should get my records because often they contained information I was never told. I had never questioned anything up to this point. So, I requested and paid for my records from this doctor. Close to $50 and almost 30 days later, I went through them. A lot of things surprised me. One more than anything:

What? I had a 9.7 ug/dL serum cortisol at 11:00 PM?

The lab ranges on the report were for 4:00 PM. Serum cortisol ranges have only been established for 8:00 AM, 4:00 PM and around midnight. Midnight serum cortisol should be close to zero. Since few labs ever draw the midnight serum cortisol, they don't put the ranges on the lab reports. My PCP erroneously assumed the range was correct and my test was normal.

You can see by my scrambled notes on my lap, I was anxious to correct this. I faxed a copy of this report to my PCP with my annotations, and also left a message. She did not accept email. She was shocked and nicely ordered more for me to do, and I had a lot more high results after that.

All of this is important to me today because of an ongoing discussion on e-patients.net: Health Sites: Some Are More Equal Than Others . If I had asked for and received my "data" sooner, I would not have wasted months with no testing. I also would not have known to do that as quickly without input from support folks. This brings the question in my mind:

Do I need my data asap to be an empowered e-Patient?

Maybe. We need to be very careful about assumptions we make from our own experiences. Everyone does not have the same experience, nor is every support need the same. It is very hard to be objective in a subjective world. In my world, I believe I do.

---