And It's About Time There Was Some Support For Cushing's!
Like so many others here I am not sure when my symptoms started. I have had so many stressful events in the past few years that I have a hard time telling what was just stress related symptoms and what might have been the start of cushing's.
Like a lot of people here the weight was my first flag so I set up an appointment to see my family doctor. I have always leaned toward being a little over weight, but in the past had always been able to get it off if I really buckled down and watched what I ate and got a little more exercise I could see results. Suddenly that didn't happen anymore. I also suffer from hypothyroidism so my doctor attributed most of my problems/symptoms to that. At the appointment he mentioned that my face was moon shaped and questioned cushing's. I took a blood test the following morning, but I am not convinced it was administered correctly, as it was not done like any of the blood tests that I have had done since my endo starting running tests. Anyway I got the call the results were negative for cushing's and I just needed to diet and exercise, that I wasn't trying hard enough or doing too much cheating. He referred me to a dietician(which was a waste of time and money, not that there aren't good ones out there, but this lady handed me a bunch of photocopied information and said good luck). I tried what she recommended, but still no luck.
That was 3 years ago. I was able to get a few pounds off here and there, but they always came right back and brought more with them. I changed family docs and started seeing a PA-C that was excellent, then she moved before we got very far in figuring out what the problem might be. I was sad to lose her, she actually listened when I talked about how I felt. She tried a couple antidepressants, but they made me so tired I couldn't function, I was already tired. Then I started seeing her replacement Jodi O'Shea, another PA-C who has been excellent. I went in for a yearly exam and started explaining how I was feeling and what my major complaints were. She told me she suspected PCOS, I mentioned the cushing's that the other doctor had tested me for a couple years earlier. She listened and wrote both potential diagnosis down on the referral.These were both something she wasn't familiar enough to try to diagnose on her own, so she referred me to Dr. Lisa Stone in Wenatchee, WA. I went to see her expecting the usual, everything looks ok story, but instead she changed my thyroid medications around and the way that I take them and began running blood and urine tests. I have done 1 24 hour urine and several dexamethazone suppression tests. Those came back off the charts so the next step was an MRI of the pituitary. Those results were inconclusive. So I was referred to the University of Washington for an IPSS test. The staff there was excellent, but the test itself really threw me for a loop. I think it was the medication they gave me to stimulate the pituitary. Anyway I get those test results back on Thursday and hopefully a referral to a surgeon. Not that I am looking forward to surgery, but I am hoping to find the old me under all this. I will post pictures later and with any luck they will be post op pictures of me looking and feeling like the real me.
Good luck to anyone struggling to find the diagnosis. It can be a long road as so many doctors just want to pat you on the head and tell you to eat less and get more exercise. Hang in there and don't give up. Make sure the test for cortisol is performed correctly. Maybe if I had had the correct test done 3 years ago I would be writing this bio as a cured cushie, instead of just a diagnosed cushie.
