And It's About Time There Was Some Support For Cushing's!
My name is Natalie and I am 26 years old. I have thought that I had Cushing's for over two years, since I was 24. I was taking my pre-dental classes at a community college and learned through my organic chemistry and my anatomy two class about many disorders...one of them was Cushing's.
About a year after I took that course I noticed I had a buffalo hump and remembered its connection with Cushing's. I immediately saw my local practitioner and asked if he would check my cortisol. He was reluctant but did it anyways...this was the beginning of my Cushing's nightmare. I had two blood draws AM and PM and they came back high. My doctor agreed to send me on to an endocrinologist but when I read his referral letter (I started getting all of my records because I found out that Doctors weren't telling me the whole story about my condition) anyways, back to the referral letter, I read it and he basically blew off my condition figuring it was just a false positive and that I really didn't have anything going on. He told me I just had bad genetics and that was why I had gained weight and that was what my buffalo hump was from too.
I saw the endo just weeks later and he wouldn't even address my symptoms he explained everyone that I told him about away. Everything was because I was obese (I weighed about 160). Or else bad genes. He wouldn't look at my striae and told me, and I am quoting him "I need an underactive fork and an over active foot". He charged me with an obesity consultation but did run an overnight dex test which came back normal. He told me to stop reading so much because I couldn't understand what I was reading. You should know I didn't pay his bill. He didn't help me, so he didn't earn his $200 dollar an hour fee.
Since he wasn't going to help me I tried another doctor. When I went in to him I wrote that I had all the symptoms and that I was sure Ihad Cushing's. He was intrigued that I had even heard about the rare disease and looked me over. He thought I could be right so he again ran a few blood panels and scheduled me for an MRI and and adrenal cat scan. The adrenal scan came back showing hyperplasia but my blood tests were normal. He said he was sorry, but I didn't have Cushing's and he also told me to stop reading and worrying so much. I just needed to lose weight, and he told me "I was just getting old" I couldn't believe it.
Next I went through the National Institutes of health. I found out what Doctor was researching Cushing's and he thought I warranted a visit since some of my labs showed high cortisol, some normal and the fact that my adrenal gland showed signs of hyperplasia he thought I met the criteria for Cushing's research, and the Carney Complex research also.
After a two week stay at the hospital and a ton of tests they found a couple of nodules on my adrenal gland and also some small nodules on my thyroid...but my cortisol labs came back normal. He said that I may have intermittent Cushing's and sent me home. I was told to keep watching my cortisol and to come back in a year to have my tests redone. It has been a little over a year and I am waiting to hear back from NIH. I have almost every symptom, the most severe being fibromyalgia which I am on time released and liquid morphine just so I can make it through my daily tasks. Like I said, I have many symptoms of Cushing's that most of my doctors say they haven't seen anyone with Cushing's and it is just to rare for me to have it.
One endo that I saw at UCLA told me I had three overlapping diseases...adrenal hyperplasia, PCOS and another disease that I don't remember, but she said there wasn't anything she could do for me. She thought I may have cyclical Cushing's also but didn't say she wanted to see me for anything further. she put me on glucophage for beginning stages of diabetes and sent me on my way. She also didn't get paid!
Anyways, that is my story. I know I have this and I am just waiting for all of my test to come back and show it. until then I just wait and live on pills for everything. pills for manic depression, for fibromyalgia, for cluster migraine headaches, for arthritis and for insomnia. I can't stay awake during the day and can't fall asleep at night, because of mania sometimes and pain others. I refuse to give up and my goal is to have a firm diagnosis sometime this year and I can't wait until I have a surgery date. they can take anything they want it won't bother me. That is me in a big nutshell.
I hope I didn't bore you. Lotsa luck to everyone.