Hi I am a 34 year old female who has just been diagnosed with Cushing’s Syndrome. I am married with two children ages 10 and 4. My husband is an active duty Marine and I am a former Marine.
I’ve always been healthy up until now. I had pretty much a yawn worthy medical history and I wish I still did. I guess it started two years ago when I started having to use the bathroom frequently at night. I did go to the doctor and they just told me to quit drinking before bedtime. I chalked it up to having children and maybe just a weak bladder. I wasn’t thinking rare disease.
Then I noticed that I started to gain weight and my close weren’t fitting right at all. I chalked that up to sitting at my desk job all day and not getting enough exercise. I did go to the doctor to have my thyroid tested and it came back normal. So once again I am thinking it is me and I just need to exercise more.
My husband received orders to California and we moved here in July of 2012. By this time my emotions are all over the place, my weight keeps creeping up but I think it is just stress. Determined to get back in shape I start exercising everyday at 630 in the morning. Normally I am not a morning person by any means but since we moved here I find it hard to sleep. I worked out for three months following an exercise regiment but the weight stayed on. My periods started to be further in between and would only last a couple of days, I went to the doctor for that as well. I was told there is “irregular” periods and then there is “irregular” periods and mine were not that bad. I had them test my thyroid again, it was normal.
Once again determined to beat the weight I started walking vigourously and watching my calorie intake. I noticed that I would have tingling in my toes at times and that my calves seemed weak. I thought I pulled a groin muscle but I didn’t let it slow me down I just kept going. My face started to get rounder and puffier, my skin seemed so thin that I could see all of the vessels. I knew something was wrong but I couldn’t put my finger on it.
I started to do my research on the internet and that is when I discovered Cushing’s. But I thought it is so rare I can’t have this. I started going to a Chiropractor for neck pain and when they took my blood pressure they were so alarmed they took it a couple of times to double check.
In March I went back to the doctor and told them to test my cortisol levels. My husband was due to deploy in April so he planned a surprise vacation to Angel’s Camp in Northern California. By this time I can hardly walk because of my pulled groin muscle, but I was determined to have fun with my family.
The second day we were on vacation I could hardly walk so I went to prompt care and had x-rays done. The x-rays did not show anything so they sent me on my way with crutches. By the 4th day of vacay I stayed in bed resting because I really couldn’t walk. I got up to use the restroom and I had the crutches and fell backwards. I ended up fracturing my hip. I had surgery and told the doctors I was currently getting tested for Cushing’s and that my 24 hour urine test came back abnormal.
They had a really hard time keeping my blood pressure under control during my hospital stay. While I was on vacation the endocrinologist office had called me to schedule an appointment but first I had to have another 24 hour urine test and dexamethasone test done before the appointment which was scheduled for April 23. Well upon our arrival back home I was referred to Orthopedics because of my hip.
Ortho took x-rays and it was determined that after the surgery my hip was not aligned right and a second surgery ORIF was needed. It was conveniently scheduled for April 23 (the day I was supposed to see Endo). I had my second hip surgery done and while I was in the hospital they were so concerned with my heart rate and blood pressure they did a CAT Scan for pulmonary embolism.
Well thankfully I did not have a PE but they did discover a nodule on my left adrenal gland. I am having it removed on June 11th and from what I’ve read I am terrified of the aftermath.
Is there any good news out there? I really hope so, I just want to be healthy and enjoy life again!
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