People sometimes ask me how I found out I had Cushingâs Disease.  Theoretically, it was easy.  In practice, it was very difficult.
In 1983 I came across a little article in the Ladies Home Journal which said: âIf you have these symptomsâŚâ
I found the row with my symptoms and the answer read ââŚask your doctor about Cushingâsâ.
After that article, I started reading everything I could on Cushingâs, I bought books that mentioned Cushingâs. I asked and asked my doctors for many years and all of them said that I couldn’t have it.  It was too rare.  I was rejected each time.
Due to all my reading at the library, I was sure I had Cushingâs but no one would believe me. My doctors would say that Cushingâs Disease is too rare, that I was making this up and that I couldnât have it.
In med school, student doctors are told âWhen you hear hoofbeats, think horses, not zebrasâ.
According to Wikipedia: âZebra is a medical slang term for a surprising diagnosis. Although rare diseases are, in general, surprising when they are encountered, other diseases can be surprising in a particular person and time, and so âzebraâ is the broader concept.
The term derives from the aphorism âWhen you hear hoofbeats behind you, donât expect to see a zebraâ, which was coined in a slightly modified form in the late 1940s by Dr. Theodore Woodward, a former professor at the University of Maryland School of Medicine in Baltimore.  Since horses are the most commonly encountered hoofed animal and zebras are very rare, logically you could confidently guess that the animal making the hoofbeats is probably a horse. By 1960, the aphorism was widely known in medical circles.â
So, doctors typically go for the easily diagnosed, common diseases. Â Just because something is rare doesnât mean that no one gets it. Â We shouldnât be dismissed because weâre too hard to diagnose.
When I was finally diagnosed in 1987, 4 years later, it was only because I started bleeding under the skin. My husband made circles around the outside perimeter each hour with a marker so my leg looked like a cut log with rings.
When I went to my Internist the next day he was shocked at the size of the rings. He now thought I had a blood disorder so he sent me to a Hematologist/Oncologist.
Fortunately, that new doctor ran a twenty-four-hour urine test and really looked at me and listened to me. Â Both he and his partner recognized that I had Cushingâs but, of course, couldnât do anything further with me. Â They packed me off to an endo where the process started again.
My final diagnosis was in October 1987.  Quite a long time to simply  ââŚask your doctor about Cushingâsâ.
Looking back, I can see Cushingâs symptoms much earlier than 1983. Â But, that âs for a different post.
