Wednesday, October 28, 2009


I went to my endocrinologist today to discuss the tests I had done a few weeks ago. I went there today thinking we would talk about the possibility of me starting a workout regimen. I had read about the need to talk to your doctor before starting a workout regimen if you had hypertension, diabetes, or asthma. I fit into all of the categories.

We went through the regular routine. Maria, Dr. Jones' nurse, took my blood pressure, heart rate, and asked me a few questions about how I was feeling, entered the information into my electronic patient file. Normal stuff. I wait about five or ten minutes and Dr. Jones comes in.

"We didn't get it," he says as he takes a seat on the little swivel chair in front of the computer and desk area. He then proceeded to show me my test results from the blood, urine, and saliva tests. He showed me the comparison levels from earlier tests I had done in the year. They were all high. Very high.

Dr. Jones spoke with the pathologist who studied my tumor and he confirmed that it immunostained for ACTH and was "a" cause of my Cushing's. We can't say it was "the" cause anymore. He also spoke with my regular doctor, Hanadi Farrukh. She was very disappointed to hear this news about my Cushing's. Dr. Jones also read a few hours about "Cyclic" Cushing's. He said he doesn't even really understand it fully.

It is safe to say I was shocked to hear this news. Shocked, disappointed, frustrated, and jilted.

Dr. Jones said he had been a little surprised at our last visit two weeks ago that I still had diabetes (my blood sugar levels should had dropped to normal right after surgery), that I still had not lost my excess weight (this also should had been dropped very quickly), and that I had not been made ill after my surgery (usually happens because cortisol levels drop so drastically, the use of steroids is necessary to keep people alive). But the confusing part was that my tumor immunostained for ACTH, claiming to be the cause of my Cushing's.

Drs. Jones, Farrukh, Heaney, and Duckweiler will now work together, and possibly with others says Dr. Jones, to find out what is wrong with me. Why I still have Cushing's. Where it is. Etc.

Needless to say, I am going to have to do more tests. More needles. More scans. Eventually, more surgery. Wouldn't you just know it? Next week, a full body octreotide scan and full body CT scan.

At least I feel good. I walk normally and my husband and others say I look good (healthy). My hump on the back, hair on my face, diabetes, high blood pressure, stretch marks, mood swings, and overwhelming fat all over (including my moon face) are still here. I kept thinking they were going away, but I guess - no. Not going away.

I am still in shock. But, the way my life goes, I guess this is to be expected.

1 comment:

  1. I'm so sorry to hear about your test results - I can only imagine how frusterating it must be, to feel like the rug has been pulled out from under you.
    There will be answers - maybe not today or tomorrow. You're now you're own patient advocate and with your knowledge & perseverence you can conquer this!
    Keep writing & keep sharing.