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.
I have been struggling with progressive symptoms of extreme fatigue, muscle weakness, increased anxiety and depression, rage, acne, weight gain, and sweating just doing small tasks over the last 3 to 4 years. I also have a very hard time controlling my body temperature. I get really cold, turn the heat up, get really hot, turn the heat down, over and over throughout the day. (Iâm 36 years old)Â If Iâm sitting Iâm freezing. If Iâm up moving Iâm on fire and sweating. Just such dramatic ends of the spectrum. Anyway, for a long time my GP was only checking my TSH. (Hypothyroidism runs strong in my family). My TSH has always been on the low end of normal. I was feeling so awful, I insisted they were missing something and asked them to check my FT4. That has also always ran at the lower end of normal. They treat me with Levothyroxine to try to increase my FT4, but in doing so, cause my TSH to go even lower. I googled what it meant to have a Low TSH with a low FT4 and it said it could be hypothyroidism caused by a pituitary tumor. I then came across Cushingâs which started showing pictures of the classic âbuffalo humpâ and my jaw hit the floor.
About a month ago, I caught myself in profile in my mirror and was completely taken aback by my appearance. My husband and I arenât sure how long my neck has looked this way. Either way I was just wondering what others thoughts were. My GP has ordered some kind of cortisol test thus far that Iâll go for tomorrow. I would also like an MRI of my pituitary and possibly adrenals. Iâm just tired of sleeping my life away and have been searching for answers for so long. Please let me know what you think of the hump.
Are there other causes for this appearance? Thanks