February 26,2004

These past few days have been strange indeed. There are some nasty people out there in cyberspace who continue to bombard me with email viruses.  I have counted 15 so far today.  I am tracking the IP addresses and my internet provider has promised to look into the matter.

I would like to take this opportunity to thank Anne for the kind and supportive message she posted. Anne, your post uplifted my spirit and put a smile on my face. Thank you from the bottom of my heart. The world is a better place because of people like you who believe in truth, kindness and integrity.

Tuesday morning I had my 5 minute appointment with No Name. I needed to have some prescriptions refilled. I asked No Name for copies of my latest lab tests and he obliged. Since my appointment to discuss these results is on March 17, I wanted to make sure I had them in hand for my appointment with the hypertension specialist on March 1.

The lab reports showed some interesting but confusing results. My 8:00 AM serum cortisol was high at 757 with the lab normal noted as 70-415 nmol/L. My 4:00 PM serum cortisol was low at 66 with the lab normal noted as 70-415 nmol/L. The result of the 24 hour urine cortisol was low at 53. My blood pressure at the lab was 178/110. This corresponded with the reading I had an hour before I left for the lab. Maybe the fluctuating cortisol levels are another reason for my bone pain, the inability to stay asleep and the extreme fatigue.

Later that afternoon I took another look at my lab test results because I had a nagging feeling that something was missing. It didn’t take long for me to realize that the lab had neglected to do all of the tests they were asked to do. I then noticed the second error; they did not test for fractionated metanephrines. The lab technicians had been given strict instructions to do a fractionated urine metanephrine but they decided it was too complicated. I shouldn’t be surprised. After all this is the same lab that neglected to tell me in the past that you need to follow very strict dietary guidelines for up to five days before a metanephrine test. The third and fourth errors; the lab conveniently neglected to do a plasma metanephrine and a 24 hour epinephrine. They certainly took enough tubes of blood so that cannot be their excuse. They certainly had enough urine since I brought in one full jug and one quarter full jug. Since this is the only hospital lab in the area it is scary to think what happens to inpatients. Could this be one reason why so many end up downstairs with tags on their toes?  The fifth error; they omitted the DHEA test.

According to the information available at http://pheochromocytoma.org, “the 24 hour urine tests for catecholamines, metanephrines and VMA are fairly standard in the beginning stages of a diagnosis. These must be performed correctly; the urine specimen must be kept refrigerated during collection, and an acid preservative added to the collection bottle. In some cases, unless the individual has an episode during collection, the urine test could be negative, even with a pheochromocytoma present. There is a blood test available which tests Plasma Metanephrines and Catecholamines. Some pheochromocytomas researchers believe that because of the high sensitivity of the plasma free metanephrines and the low incidence of the tumor, that plasma free metanephrines should be carried out as the first test. If that is not available, then the next best test is urinary fractionated metanephrines, but NOT urinary TOTAL metanephrines.”

It is very obvious that my phone call and then my actual visit to this lab to discuss the metanephrine tests were in vain. The lab technicians had no intentions of following instructions. Again I shouldn’t be surprised. Last summer the lab refused to do several tests my doctor had ordered. When I telephoned the “big boss” at the lab, he informed me that they only did routine tests at their hospital; that their lab was more like a factory with a conveyor belt.  Anything that didn’t fit the size and speed of the conveyor belt was refused.

The good news is that I am still alive and kicking; well, maybe not kicking. People who have not experienced this never ending pain and never ending struggle to find medical help have no idea what we go through. The countless disappointments with doctor appointments that end in futility eventually take their toll.

I don’t trust doctors. How can I, when I have not found one that has had my best interest in mind in the last 6 years.  I am one of those “throw away” women. I am 56, overweight, in pain and sick and quite frankly I believe that my doctors consider me a throw away.  I believe they look at me and think, “What could this fat old woman possibly contribute to society” and then promptly disregard anything I have to say. It has become obvious that in their eyes my life and my health mean nothing.

These medical professionals will not destroy me and throw me on that heap with the other “throw away” women. They will not succeed in making me doubt myself and my sanity.  I will not be a mistake that they can bury and forget about. My words will haunt them long after I am gone.

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