I would like to preface my story by saying that for the first time in my life, at age 16, I am feeling happy and well. I wanted to share my story of Cushing’s Disease in hopes that it will be of help to others who experience the severe mental health aspects of Cushing’s. I’d also like to thank my parents for their care and concern for me through years of not understanding what the problem was as I think some parents would have given up. I do think it was helpful that my Dad is a doctor.
According to my Mom, as a baby I was always irritable, even though I didn’t have colic. As I got older, I threw tantrums just like any other child would. Nothing concerning. However, as I continued to grow older, around the age of 8, the tantrums got worse instead of going away. They escalated into violence and real bouts of rage. One weird thing was, from age 6 to age 10, I hadn’t gained any weight, weighing only 60 lbs.
When I was 12, things were horrible. I had already been on many different medications to control ADHD, and many psychiatrists thought I had bipolar. I stopped going to school, and would spend all day screaming in a corner of my closet. My parents bought me books to educate me on bipolar, and I knew that it somewhat sounded like me, except I never felt extremely happy like the other kids who had it. Also, at 12 years old, because of a medication I was taking for ADHD, I was 5’1”, only weighing 72 lbs. I was EXTREMELY underweight, and was starting to feel depressed.
I was beginning to self-harm, and went to my first psychiatric hospitalization in May of 2012. In this hospital my medications were changed and I was started on Risperdal, a medication that had weight gain as a common side effect. I was there for 12 days. When I returned home, I only stayed for 5 days before going back for another 5 days. By that summer, I had gained so much weight that I was now 125, so I had gained 50 lbs in only a few months. I then looked normal weight, but was still gaining.
When school started, I was placed in a private high school for girls with emotional needs. I was only there for two months before going back to the hospital for self-harm and suicidal thoughts. I didn’t feel better, but was discharged anyway after 10 days, because I was “safe.” I was gaining so much weight that I had become bulimic. This stayed a secret for a long time. At this school, all I could talk about was how depressed I was. I had attempted suicide so many times there that I couldn’t even count. I went to the hospital about 7-8 times in that one school year, each time lasting at least a week.
After a year there, I was moved into a residential setting, at the same school. My face became puffy, I had bad acne, warts on my left hand and right knee, purple stretch marks, and I noticed my Dad feeling the back of my neck quite often. I had the warts frozen many times, but they always came back. All of my doctors thought my weight gain was related to my medication, which I wasn’t too sure about, because of how quickly the weight gain was happening. I was scared and knew something was wrong. I mentioned it many times to my parents, but they agreed with my doctors. I had been to the nutritionist many times, who I would always tell that my diet was fine.
My depression got worse. When I was 15, I was running away a lot and I tried many things to try to end my life. I weighed about 200 lbs, and was STILL GAINING. I eventually realized that all of my issues were related to being around other kids my age. When I would self-harm, it was because I felt no one liked me. When I didn’t go to school, it was because I was afraid of being judged, etc. I thought I had Social Anxiety Disorder, and asked my parents if I could be home-schooled (May, 2014). They agreed, and took me home within a few days.
When I was home, things were somewhat better, but new symptoms were appearing. I was self-harming less, and seemed happier. But after a few months of being home, I would have panic attacks. When my brother would tantrum, I would hyperventilate and feel like I couldn’t breathe. I would get on the floor and just scream, and there was nothing I could do to stop it. At night time my legs would be so weak that I literally could not move them. I would have to LITERALLY drag myself into bed. My face was very round and puffy, my stretch marks were still purple, and my Dad was still feeling the back of my neck a lot. I never really knew what that was about.
A few months later, (August, 2014), my Dad and I were watching our favorite TV show, Mystery Diagnosis. The woman on the show was diagnosed with Cushing’s syndrome. I had read about Cushing’s a few weeks before and thought it sounded a bit like me, but I kept that thought to myself.
About a month after watching the episode, my Dad called me over to talk with him and my Mom, and they looked very serious. He lifted up my hair, pointed to the back of my neck, and said, “See? She DOES have one!”. I wasn’t sure what that was supposed to mean, but I knew it was related to the way he felt that area. Apparently this whole time he was feeling my buffalo hump, which I was upset to find out I had… I asked what it was about, and he said to me, “I think you have Cushing’s”. My jaw literally dropped.
I had many appointments with an endocrinologist, many blood tests, a head MRI, and one 24-hour urine test. One blood test came back with high cortisol, but my endocrinologist said it wasn’t high enough for a diagnosis. However, my dad had some concerns when he saw my MRI and asked my doctor about them. My doctor said he wasn’t good at reading MRI’s, and sent me to a neurosurgeon.
When I arrived for my appointment, my neurosurgeon walked into the room and literally said as he closed the door, “You have Cushing’s!” He looked at my blood work, and said my cortisol was indeed high enough for a diagnosis, and pointed out that my ACTH was high too. It turns out my Dad’s concerns looked like a sinus infection, but they were only on ONE SIDE! I was scheduled for an IPSS test, which within a few days came back with results highly positive for a pituitary microadenoma. I was scheduled for surgery on January 15, 2015.
The surgery was a success, except for a side effect of Diabetes Insipidus. I had half my pituitary removed during surgery. Within a few weeks of recovery, my moon face had gone away and I was emotionally stable. I was losing weight quickly, and my stretch marks were fading. My buffalo hump was shrinking, and I could walk to bed again. It was such a relief, I can’t even explain.
I just turned 16, and am doing amazing. My moon face is 100% gone, my buffalo hump is VERY close to being completely gone, I am emotionally feeling so much better than I have in my entire life. My Mom thinks I was born with Cushing’s, and my Dad just says we’ll never know how old I was when I got it. I personally think it was when I was 8. It doesn’t matter though. It’s over, I’m better, and will continue to follow my dreams. Good luck to anyone else who is struggling, I believe in you! The photo is me, 7 months post-op.
Member number: 152926
Newsletter: Winter, 2015
State: New York