Doctors and nurses talk about the patients who changed their lives. This week: Internist-endocrinologist Liesbeth van Rossum.
“She had been walking around for six years with symptoms that no internist, no neurologist and no psychiatrist knew what to do with. Physically there was little wrong with her, only her behavior had changed completely. She was agitated and very irritable, she had also developed a strange speech with a sort of stutter in it. Before she was referred to our hospital, she had received twenty-nine electroshocks, but they had no effect either. Her strange behavior irritated the doctors and nurses, who sometimes thought she was simulating. An experienced nurse once bit her: if you were my child, I would have thrown a glass of water in your face.
“After an internet search, she had diagnosed herself: she must have Cushing’s disease, a rare condition in which the adrenal gland produces too much of the stress hormone cortisol. That sounded unlikely, because patients with that disease have many specific physical complaints and she had none of those. Nevertheless, we continued to search and in the end she turned out to be right. On the scan we saw a benign tumor on the pituitary gland, a gland in the brain, which turned out to be responsible for the overproduction of cortisol. Although it remained strange that only her head had become confused.
“We removed the tumor and slowly she got better. And then suddenly her old complaints came back. She was a few years later, back to square one, and distraught. Because unlike before, we couldn’t find a cause now, even after endless research. The amount of cortisol in her body was normal, so where did that strange behavior come from? We did everything we could to find out what was going on. I consulted with colleagues from all over the world. But what she had, no one knew. She was unlike any of us had ever seen.
“We could have done new tests or tried experimental drugs, but we had no clear point of action, the situation was hopeless. And she understood that. She was an intelligent woman who was well aware of what was going on in her mind and was keenly aware of how people responded to her. And she couldn’t bear that anymore, not again, she didn’t want to go on. The euthanasia request she made was granted.
“I remember her mother calling me one Monday morning after the weekend transfer to tell me it was going to happen the next day and how impressed I was. I later learned that the whole family had gathered around the kitchen table on the morning of her death, and that she had been cheerful and sharp, in the bizarre knowledge that she would not be there that afternoon. I still don’t know what was wrong with her.
“I suspect that the cells in her body were insensitive to cortisol, so she did not have typical physical symptoms, but that her brain cells were sensitive to it, perhaps even hypersensitive. Her story has once again made it clear to me how hormones can make the brain run wild. We, the doctors who focus on the body, should see the brain much more as an organ, an organ that can become ill, just like a heart or a liver. If you can get so off track psychologically due to a disruption of hormones, then we have to be much more alert.
“I would have loved to know how she used to be. In the photos she once brought me, I saw a radiant young woman. She had a nice job, friends, a relationship, but she lost everything due to a mysterious change of character. Years later, at an international conference, I heard about a similar patient, the second in the world. After her death I spoke to her parents a few more times, they were always in tears. It’s been ten years now, but I’m still walking around with her in my head.”
