I am a 47 year old woman diagnosed with Cushings Disease June 2014. I have always been one of those girls who was curvy, but was a yo-yo in the weight department.
About 1o years ago I was diagnosed with PCOS. I had extra facial hair, extra weight, irregular periods, infertility problems. Boy did I feel good about knowing what was wrong with me!
Then a couple of years after that I had a stress fracture in my right foot. I seemed to take forever to heal, but finally did. I had several uneventful years. I did have pain in my pelvic area for quite sometime before deciding something had to be done. Four years ago, after visiting my gyno, it was decided that I should have a hysterectomy due to fibroids. That is when the fun really started for me.
I really didn’t noticed, but sometime after that my skin became really oily, I had acne (for the first time in my life), and the weight had come on. My hair became quite wavy. And the stress factures started.
First my left foot, the 2nd metatarsal, then the 3rd metatarsal. All in all I have had four different instances of stress fractures in my feet, and one on my ankle. What got everyone’s attention though, was when my hip broke.
I had been seeing a chiropractor for back problems I figured were due to wearing a boot for my fractures on and off for years. My back did not seem to be getting any better. As a matter of fact my hip area seemed to hurt worse. Then, early the morning of January 8, 2014, I was trying to make my way to the bathroom, when I heard this awful noise, felt an even worse pain and down I went. Later the doctors figured I had had a stress fracture that had started to heal in the femoral neck of my hip, but broke.
All of my doctors were scratching their heads. But that was about all. My PCP ran some blood and urine tests, but really did not find anything out. I FINALLY asked every one of my doctors, since they did not know what was wrong, where did they suggest I turn. Each one said and endocrinologist. Of course my next question was “What is an endocrinologist?”.
That was in February 2014. I was referred to Dr. Ferries, one of the few endos in Wyoming. It took a while to hear from her, but when I did, I was disappointed to hear that the soonest I could get in to see her was in June.
In the meantime, I had refractured my ankle. April 1, 2014 I had the ankle repaired. April 7, 2014 I passed my first kidney stone. I let Dr. Ferris know about it. Shortly after that my appointment got moved to May.
My appointment with Dr. Ferries last about 2 hours. After asking all the questions, listening to my story and an exam, she told us she thought it may be Cushings, but needed to do several tests. She let us know that it was something that would take some time.
I did the urine tests, the blood tests, and an MRI. My cortisol levels were way out of the norm. The MRI showed a 6mm microadenoma on my pituitary. I was ecstatic! After deciding to have my little friend removed in Denver, Co, Dr. Ferries sent my referral to Dr. Lillehei at University Colorado Hospital.
I took a few days, but they called to make an appointment. July 31, 2014 was my appointment with the brain surgeon. I was so happy to be on my way to feeling better! I had to tell my story again to Dr. Lillehei, the brain surgeon. He did not see the tumor, so he wanted me to see his endocrinologist. Then I had to tell my story yet again to Dr. Wierman. She told me she was not impressed by my previous tests and MRI. She would like me to do them all again. She told us they had their protocols, and when they did not follow them, they usually got bit. I was disappointed, but understood.
Those results of those tests were inconclusive. My cortisol was not nearly as high. So the next step was IPSS. The petrosal was scheduled for August 18, 2014. The results of the that test were quite definitive. There was an ACTH secreting tumor on the right side of my pituitary. Hooray!! My surgery was scheduled for September 5, 2014.
The surgery went off without a hitch. Colin, Dr. Lillehei’s PA, then informed me that the surgery was the easiest part. He said I would pretty much feel like sh@%. He was right. I am feeling better and better. My skin is not a grease pit any more. I am loosing weight. My appetite sucks and sweets make me even more nauseated. I can manage to make it to aquacise several times a week, though. I am looking forward to the days when I have energy!
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