If I remember correctly, it is said that Cushing’s strikes 15 people per million. I think that number is very low. Only a diagnosed patient can be counted in the statistics and I see many Cushie looking people walking around.
There is a saying in the Cushie community (sorry I don’t know who to attribute it to) that goes “Cushing’s isn’t rare, just rarely diagnosed.”
For some reason many doctors can’t wrap their mind around the fact that someone has to have these “rare” diseases. Just because it’s considered rare doesn’t mean you don’t have it. Many doctors only run one or two tests and rule out Cushing’s. They don’t understand that many Cushies cycle and will have test results all over the board. Without correct testing one would be very lucky to get a diagnosis.
I went with my maternal instincts. Justin was the first who became really sick with Cushing’s. It took me awhile to figure it out because quite a few of his symptoms mimicked Crohn’s. Since I have Crohn’s and it seems to run in families that made sense. But my GI ruled that out.
I spent a lot of time searching on the internet. All his symptoms pointed towards Cushing’s. When I first discovered it I was sure that was what he had. I came across the best web site. It is http://www.cushie.info/. I felt like I’d found a home when I got there. The forums there literally saved my family. Only with the shared knowledge of so many could I of found the right doctor, who believes people can actually have Cushing’s and is willing to go the distance while testing for Cushing’s. It was also from other patients that I found the surgeons that would do all our procedures and surgeries.
Before making the decision to take Justin and Jess (we had yet to figure out the Bill also had Cushing’s) to Dr. Friedman in Los Angeles I took Justin to local doctors and a few in Denver which is about three hours away. All but one of these doctors pretty much dismissed us. There was one PA who stuck with us but he admitted that he was out of his league, although he had no doubt that Justin was sick. One suggested that he liked getting out of school for appointments. Sure. Every teenage boy does that. Diet and exercise were suggested by several doctors. Then came the specialist in Denver who added “work well with a psychiatrist.” It wasn’t much after that that I made the decision to travel across the country to get help. By the time I was ready to make the appointment I’d decided that Jess was also showing symptoms.
I think that by the time most patients make the decision to travel across the country to get to a specialist they know for sure, although doubts creep in sometimes, that they have Cushing’s. They just need a doctor for confirmation.
There are just so many people walking around with Cushing’s symptoms and have no idea. They’ve been to doctors for so many different problems and it’s never been put together that there is one underlying cause. I can see how a family practitioner might miss it, but an endocrinologist? They should all be more educated in this area.