Family Doctor: Persistent patient gets treatment, better life

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Q: You have responded to several letters about the pituitary and adrenal glands, and I thought I should write to share my story. I am currently 75 years old, but this whole thing started when I was in my late teens and early 20s. I started to have some health problems but never gave them much thought. Then, at 23, I got married.

A couple of months into the marriage, I suddenly gained 20 pounds. Then I developed high blood pressure, darkening of the skin, a puffy face, muscle weakness, bruising, nervousness, uncontrollable emotions, back pain and headaches. Over the next seven years, I saw six different doctors. All of them gave me a diet sheet, treated my blood pressure and told me to lose weight. They didn't seem to care about the other symptoms and didn't understand that I couldn't lose weight. (I had been trying.)

I started seeing a chiropractor for treatments, but that didn't help. In fact, it made things worse. I didn't even want to live anymore. Then one day I had such a bad attack of back pain that I was rushed to the ER, where I was given a shot of something that put me to sleep for eight hours. When I woke up, the pain had dulled and was bearable.

I returned to my chiropractor and described the situation. He said judging by my skin color and the description of the pain, it was a deep inward pain, and he made me an appointment with a doctor. This new doctor ordered some tests. When they came back, he told me that my adrenal glands were putting out too much hormone. For a woman my age, the level should have been 17, but mine was 37. He gave me the diagnosis of Cushing's disease.

Somehow, the University of California Hospital in San Francisco heard about me and wanted me to go to them because I had every symptom of the disease. They were persistent, and, at that time, I was ready to try anything that might help. I agreed to go and become a research patient. I had both of my adrenal glands removed in 1964. I was told I didn't have Cushing anymore because the offending glands were gone, but now I had Addison's disease.

Now I take two pills to replace the hormones that my adrenal glands produced. Also, in 1974, I had a pituitary tumor removed.

I live a relatively normal life. I have to be careful to limit my stress, but I am happy to be alive. I was told that if I had not had surgery and went untreated, I would have only lived another five years at the most.

My primary reason for writing is to share my story but also to tell anyone out there not to be afraid to be a guinea pig. It was hard for me, but in the end, it was worth it. I had my life back.

A: Cushing's disease (now known as Cushing's syndrome) is a condition in which the body is exposed to too much cortisol. This can occur because of abnormalities of the adrenal or pituitary glands, certain tumors that make and release the hormone adrenocorticotropin (ACTH) and more.

Common symptoms include high blood pressure, upper-body obesity, severe muscle weakness and fatigue, easy bruising, backaches and high blood sugar. In women, it may also be accompanied by excess facial and body-hair growth and irregular and absent menstrual periods.

Treatment depends on the cause. Back in the late 1950s and early 1960s, not much was known about this disorder. I believe you were incredibly lucky to have been diagnosed. Your "experimental" surgery to remove the adrenal glands saved your life but made you rely on medication to do what your body is unable to do. Today, removal of the adrenal glands is a last resort used for persistent cases or those that are the result of tumors.

Addison's disease is the exact opposite of Cushing's. It is the result of too little cortisol. Like its antithesis, it can be caused by abnormalities of the adrenal or pituitary glands, certain disorders, chronic infection, cancer and removal of the adrenal glands.

Symptoms generally include chronic and worsening fatigue, weight loss, muscle weakness, loss of appetite, nausea, vomiting, low blood pressure and more.

Treatment is simply replacing or substituting the hormones that are not being produced.

In both conditions, if there is an underlying cause, it must be treated. Both also require monitoring by an endocrinologist, a physician who specializes in glandular conditions, such as Cushing's, Addison's, diabetes and more.

Thank you for writing to share your experience.

Write to Dr. Gott c/o United Media, 200 Madison Ave., 4th fl., New York NY 10016.

Additional information:

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