Cushing's Info

Wow...where to start. Well I like to watch medical shows on Discovery Health and saw a little kid who ended up being diagnosed with Cushings.

So when I was about 12 (I'm 26 now) I told my mom I knew there was something wrong with me. She just blew me off, but deep down I've known SOMETHING wasn't right. I've just never felt great.

Fast forward to March of 2008. I was kneeling at my job writing something using the seat part of a chair as a table. As I stood up something didn't feel right in my knee. It ended up swelling to over the size of a softball by the end of the night so my mom made me go to the ER. Doc said nothing was wrong, but to follow up with my PCP. I was a good patient and did that. The day I got into the PCP he said, "wow, you'll need surgery. I'm going to refer you to a orthopedic doctor." So, as the good patient I am I went to see him. He took more x-rays and said, while yes, I did injure my knee, the rest of my body just does not move the way it should. He sent me to a rheumatologist and gave me a cortisone injection. After a few simple blood tests I find out I have Ankylosing Spondylitis which is a disease that affects the joints. I started on medication for this, but I just kept feeling worse and worse. I had to go for cortisone shots almost every 5-6 weeks for my knee, and because of my joints I was banned from working out.

I decided one day in about April/May of 2009 to go on a pill strike because I just didn't like the way I was feeling. That involved me dropping my birth control as well as my joint medicine. With no exercise I was feeling really bad about the way my body was starting to look. I was gaining weight consistently and started getting horrible stretch marks. One day I was looking at myself while naked in the mirror. I was just so disgusted that I needed to just figure out what was wrong cause I know that there is still something there. I turned to the side and see a hump between my shoulder blades. I KNEW from that show that it was Cushings. That sparked some research online and I'm able to say "check" to almost every symptom.

Stretch marks, buffalo hump (which has sense went down), high cholosterol, massive amounts of weight gain, joint pain, muscle weakness, excessive hair growth, etc. I started bawling my eyes out and did what anyone would do. I called my mom. She listened, but didn't seem to fully grasp what I was saying.

Thus starts my trek for a doctor. I went to my PCP, who I had already had some issues with in the past, and he informed me that my face just wasn't fat enough to be Cushings so he wouldn't even test me for it. He did do some hormone testing and found that I have low testosterone levels.

I went to a different doc and she did 8AM cortisol testing and an 11PM saliva test. Both came back in the normal range, but she gave me a referral to see an endocrinologist. I just went to see the endo last week. The PAC came in before the doc and talked to me about symptoms for almost 20 minutes. The doc and him talked about my symptoms outside my door and then the doc came in and asked me one question only: "Have you had an epidural or any cortisone shots?" I hadn't told them about my knee injury. I said, "yes, I've had quite a few for an injured knee".

She thinks that when I was given the cortisone shots my body stopped producing it's own cortisone. She didn't tell me what the treatment would be if that's the case, but she sent me for a boatload of testing. I have an appointment on 8/20/09 to get the results of my 16 tests. I'm excited/nervous all at the same time. She seemed so adament that this was the case, but also informed me that this can be very difficult to diagnose.

If I can't figure it out through her I'm going to see Dr. F in LA. I'm just so tired of this. I think she's either right, or that I'm cyclical.