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The Quest for Diagnosis...Part One

25 June 1999
by Troya Renee Yoder, used with permission
as originally posted on Suite, Pituitary Disorders

As far as science has come in the past decade, it would seem surprising that doctors have such a difficult time diagnosing pituitary tumors. But they do. It has been estimated that it often takes pituitary patients up to five years to get a correct diagnosis. In the mean time, they suffer needlessly, while their condition becomes more debilitating as their body puts up with the excesses or lack of life-giving hormones. In many cases, it is not until the disease has progressed so far that the physical toll on the body is unmistakable.

Many pituitary patients have been to numerous doctors, and despite their symptoms, the physicians find 'nothing wrong'. Often the patient is sent home with a prescription for an anti-depressant and a diagnosis of depression. The anti-depressant may relieve some symptoms, but the patient knows something is still wrong. Back to the doctors again. The doctor changes the anti-depressant - it must not be working anymore. And the cycle continues...

Even after diagnosis, the majority of doctors know very little about pituitary disorders. Oh, they may know the textbook list of symptoms (so why does it take 5 years for diagnosis?), but they very rarely address the debilitating quality of life issues that face pituitary patients. Pituitary tumors are in the majority of cases 'benign' or non-cancerous. But how 'benign' is something that can poison a marriage, destroy a career, send you reeling into a deep depression, and the list goes on?

It is the patients that are bonding together, sharing their stories in hopes of enlightening each other. It is the patients who are going to their doctors demanding to be heard. With this in mind, here is my story:

In May of 1995, I got married at the ripe old age of 22. I had never been on birth control and my periods were as regular as clockwork. We had a healthy little girl in October 1996, after an uneventful pregnancy. I did have a little problem with depression after her birth, but I started Prozac and felt much better. My sex drive never did return to normal, but we were too busy to notice. My periods returned, I had great energy, graduated from graduate school, moved to Alabama, and got pregnant again. We were so pleased, and in June 1998, we had a healthy little boy. After his birth, I again experienced depression, this time a little more severe. But Prozac worked its miracle a second time.

However, I still had no sex drive, was constantly exhausted, and my milk never dried up, despite not breastfeeding. My primary care physician (PCP) tested my testosterone levels, found them virtually zero, and prescribed a testosterone supplement. I had reservations about taking a 'male' hormone, and when it had no effect on my energy level or sex drive, I discontinued using it. Besides after taking the testosterone supplements for a few months, my testosterone levels had not appreciably increased.

So here I was - our little boy was ten months old and I had yet to have a period. I still expressed milk, and experienced constant headaches, hot flashes, unusual fatigue, heart palpitations, and depression. Remember, I was only 26 years old. The scientist in me took to the Internet and books, searching for a medical explanation for how I felt. First, I decided I must have a thyroid problem - most of the symptoms fit. Or maybe I was going through premature menopause. Yeah, that also seemed to fit my symptoms. Finally, my family insisted I get a medical opinion. (I think my two-hour naps twice a day were beginning to annoy them).

Anyway, it seemed appropriate to see my ob/gyn as my periods had still not returned, and my PCP seemed at a loss for what was wrong. I mentioned all my symptoms to my ob/gyn and enlightened him with my self-diagnosis. It took all I had to tell him that I had no sex drive as he looked at me holding two wiggling children on my lap, the oldest just turned two. He told me that what I was feeling is not unusual for new mothers and that parenting two small ones is exhausting and leaves little time for a healthy sexual relationship. He dismissed my symptoms as a normal part of motherhood. I disagreed, but what did I know. My PCP had basically implied the same thing.

I left his office with a prescription for Provera, and no adequate answers. My period did not return, despite the Provera, so I called back. This was beginning to get embarrassing. I had been to two doctors too many times to count over the past eleven months and I was beginning to think a referral to a pysch ward would be appropriate. Could I be making this all up in my head? My husband was losing patience with me, but who could blame him? I was losing patience with myself. I was so sick and tired of feeling sick and tired. And prolactin levels came back elevated! Hooray - something was medically wrong with me. Maybe it wasn't all in my head. Little did I was all in my head.

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