Cushing’s Disease: What Happens When Your Whole Life Changes?
by Sharmyn McGraw
As I walked into my favorite health food market I noticed Laurie, one of my closest girlfriends, hurrying to catch up with me. Laurie took one look at me and gasped. My heart sank and tears welled up in my eyes. The expression on her face was one I soon came to expect from all my friends. She was shocked and I could no longer deny the unexplainable changes in my face and body. It had been less than a two months since we had last seen each other but I had gained almost 25 pounds. At first Laurie thought maybe I was pregnant because most of the weight was in my stomach, but she quickly realized, there was something medically wrong. I did not look like her old friend she’d known for so many years.
With tears streaming down my puffy red cheeks I tried to explain but I didn’t know where to start; but my dear friend listened to my every word as we tried to make sense of my laundry list of unexplainable health problems. I was scared, confused and I needed to talk with someone, someone that knew me and knew I wasn’t crazy.
But none of this did make sense – I was committed to a healthy diet and lifestyle. I maintained a muscular size two figure by doing three hours of aerobic exercise at my gym on Saturday mornings. I worked-out with a personal fitness trainer, did yoga and ate a lean protein and veggie diet—and took my fitness routine very seriously. I had been a flight attendant and I was so tiny that I used to laugh when we had a random weight check. I could have gained 50 pounds and still been under weight restrictions. But those days were over and I gained weight from one day to the next.
So none of the weight gain and other health issues made any sense when, in 1993 at the age of 31, I started gaining weight – and lots of it. While many of my girlfriends were planning their weddings and starting their families, I was going from doctor to doctor hoping one of them would diagnose what the others were missing. I gained 85 pounds in six months, as much as 11 pounds in four days, and over 100 pounds in a year. The anxiety and depression became unbearable. My thick blond hair started falling out by the handfuls. My back, chest and face were covered with a horrible red rash, and I had a large buffalo hump on the back of my neck. Most of the 100 pounds I had gained was centered in my stomach and under my chin. My stomach extended as much as 54 inches, and looked as if I were pregnant with twins. My mind and body were spinning out of control and I knew I needed serious medical help.
I lived in Newport Beach, California just south of Los Angeles where anorexia is a compliment, not a disease. Socially I felt like an outcast and I stopped dating completely. I went from a healthy 120 pounds, with body fat at 11 percent to an obese 237 pounds- barely able to function, mentally and physically. I could no longer do the things I used to do.
Night after night for seven long years I paced the floors and begged God for help. Relentless anxiety kept me from sleeping more than 15-20 minutes at a time and no more than two hours in an entire night. I sought help from more than 15 highly-recommended physicians, but over and over I was misdiagnosed and left undiagnosed. Many doctors offered prescription drugs. Others told me I was pre-diabetic, pre-menopausal; I had fibromyalgia, a spastic colon, acid reflux, and too much yeast in my system. Some even tried to convince me I was a compulsive overeater with a mental disorder.
Desperate for the answer to whatever this was that had turned my life upside down, I underwent many expensive and painful medical tests, including two upper endoscopies, a colonoscopy, a bone marrow biopsy, multiple CAT scans and ultrasounds, and a nuclear octreotide scan. My thyroid was also removed. I had numerous hypnotherapy sessions with a therapist because doctors were convinced I was self-sabotaging. The highly-recommended licensed therapist said I was the healthiest sick person she knew and to keep pushing my medical doctors to find what was making me so sick. A tendon in my left ankle tore from walking. The orthopedic surgeon said it was a tear worse than a fit athlete would get. He said I needed to lose weight. Doctor after doctor continued to insist there was nothing medically wrong with me but my symptoms were getting worse. I knew time was running out. I refused to allow my obituary to read, “Obese woman dies of unknown causes.” So I began to research many of my previous medical records and past lab work. I found there was just one hormone that stood out on a couple of lab reports-cortisol, and it was extremely elevated. Many doctors through the years had told me, the obesity was causing a hormone imbalance. But after researching my medical history I was convinced the high levels of cortisol were causing the obesity, as well as my laundry list of complaints. But I had no way to prove it and there was no Google at the time…
I started going to a new spiritual center and one Sunday morning Reverend Michael announced there was a new class starting after service, “Finding your heart’s desire.” That sounded just like what I needed and I decided to attend. In class I was asked the question, “If all your needs were met and you had no limitations what would be your heart’s desire?” Without hesitation I blurted out, “To be well, to be happy and have my life back.” Someone in the class asked me if I believed that was possible and when I said yes! For the first time in seven years I felt at peace. At that split second I knew the universe had a much bigger picture for my life and dying of unknown causes wasn’t it.
I couldn’t stay for the second half of the class, I was too excited. I left and drove straight to a friend’s house. I didn’t have a computer in those days, so I borrowed their computer. I typed in the word cortisol. Up popped an article on Cushing’s syndrome. It was an article published by the Pituitary Network Association and the NIH. I could not believe it… right there in front of me: Cushing’s syndrome: a hormone disorder caused by prolonged exposure of the body’s tissue to high levels of the hormone “cortisol”. As I read the list of symptoms, my heart beat faster and faster. I knew I had diagnosed myself; there was something medically wrong with me! As odd as it sounds, after seven years of searching for answers from our medical community, I was relieved to know that I had a tumor! I wasn’t crazy; I wasn’t doing this to myself. I knew I had Cushing’s disease, an uncommon hormonal disorder caused by a pituitary tumor at the base of my brain. Cushing’s disease was the culprit causing all of my horrible health problems and now I had it in writing. Finally, I knew the name of the devil and I could start to win my battle.
I spoke to the endocrinologist that I’d seen several times, who had tested my cortisol three times and found each time that it was three times the normal range. But yet, he wasn’t convinced I had Cushing’s and certainly did not like the fact I researched it on the internet. But he did suggest I go to UCLA Medical Center. And I quote, “Let the guys at UCLA have something to do.” It took two months to get an appointment with endocrinologist Drs. Andre Van Herle and Pejman Cohan but I knew this is where the universe wanted me, so I waited.
At the time, I worked as an interior designer, seeing new home buyers for a new home builder’s community. At the same time that I discovered the article about Cushing’s disease; I started researching experts, and ironically one of my clients was a retired neurosurgeon from UCLA. Another client sold medical devices to UCLA and another client was a young man from China who had just had a craniotomy for a large pituitary tumor that left him disabled because he didn’t have the proper resources to get to an experienced, high-volume pituitary neurosurgeon. What were the odds of that?
I spoke with my client (the retired neurosurgeon) and asked him, what pituitary neurosurgeon would he send his family member to? He said there’s a lot of politics that I don’t like about UCLA Medical Center but, they have a neurosurgeon named Daniel Kelly; personally, he’s who I would see. He’s young but he’s already a far better pituitary neurosurgeon than my colleagues that have been doing the surgery much longer. He’s a neurosurgeon that will make history and one day medical students will study about him in their medical books.
In my heart I trusted the universe and believed I was on my way to the bigger picture just like I saw in the class at Agape. However, in my logical brain I questioned why so many doctors had missed my diagnosis when all I did was search on the internet. While waiting to see the endocrinologist, I continued to try and stay hopeful they would confirm my diagnosis, but my health worsened and I was very sick. And two months can seem like forever when your health is at risk. I couldn’t help but start having doubts of ever being well.
Meanwhile, I heard on my favorite oldies radio station, they were looking for outside sale representatives in the Orange County /Los Angeles area. I had no experience selling airtime advertising but for some reason I felt extremely compelled to fax my resume.
I couldn’t believe it when I received a call from such a large radio station. They’d received hundreds of resumes but yet somehow, without any experience they asked me to come in for an interview. My endocrinologist appointment was still two weeks away and by now my body was breaking down rapidly. Debilitating muscle spasms consumed my entire body forcing me to take medication twice a day to function. I began to question everything and I worried, “Maybe it is all in my head, and maybe the universe didn’t have a bigger plan for me. Maybe I needed to just stop all of this nonsense about Cushing’s disease, maybe it’s not even a real disease and that’s why the doctors didn’t diagnose me with it?” But at my core, I wanted my health back more than anything else. So I thought I would make a deal with God. The deal went something like this, “God, if you want me to stop this nonsense about having Cushing’s give me this new sales job. If I have to be sick at least help me make a lot of money so I can afford the medical treatment I need.”
The first person I interviewed with at the radio station was surprised to see by my resume I didn’t have experience in broadcasting or selling airtime. She seemed a little irritated that somehow I’d been given an appointment to meet with her but she continued with our interview. After we spoke for about thirty minutes she told me she was so impressed by me that she wanted me to go to my second interview right then.
She introduced me to Mr. Smith, the director of sales. He too was surprised to hear I had been called for an interview without any experience selling airtime and even more surprised I had made it to a second interview in the same day. He said no one so far whom they’d interviewed had made it past the first interview.
Before I knew it we were having a great conversation. It was about 45 minutes into our interview when our conversation took a turn. Mr. Smith told me that he knew he could teach me to sell airtime; I was just what he was looking for. He said, I could make a lot of money but the hours were long and the pressure was tough, but if I wanted the job, it was mine. I was so excited but at the same time I wanted to cry. If I took the job I would need to start a sales training program the day of my doctor’s appointment at UCLA.
My heart was broken. I wanted so much to believe the universe had a bigger picture for me. I wanted to believe I would have my health back soon. But now I worried the universe was telling me to stop the nonsense. This was a good opportunity and I needed to take the job and forget all about this crazy thing called Cushing’s, a disease that no one I knew had ever heard about. I questioned if Cushing’s was such a serious life-threatening illness, then why hadn’t any of the doctors I’d seen ever mentioned it?
My heart hurt, I was devastated. I wanted so badly to get well and have my quality of life back. However, I continued with my interview pretending I was very excited about the job presented to me. But what happened next changed my faith in the power of the universe forever.
Mr. Smith walked to the door and pulled it almost closed and said, Sharmyn you have the job, it’s yours. But first answer this question, if all your needs were met and you had no limitations what would be your heart’s desire? He said, I could get fired for what I’m about to say, but I have to say it. When you walked in my office, God told me that your purpose is much bigger than selling advertising on the air and I feel you know what that purpose is. Even more shocking he said, I think the deal you made with the universe is much bigger than selling advertising but I could be wrong so you call me tomorrow if want to take the job with our station.
There had never been a time in my life, nor has there been since, that I was in such shock. I choked back my tears. I explained about my class at Agape, my spiritual center and how they asked me the same question. Mr. Smith laughed as he explained that he and Reverend Michael grew up together and were very close friends. Now what were the odds of that?
Mr. Smith explained aside from working for the radio station he was a Minister at his own spiritual center, and that was his true passion. He said, “Now it makes sense, only the universe could have set up this interview for someone with no experience in broadcasting sales.”
I laughed and cried the entire way back home. I thanked the universe for the extreme it went to just to let me know I was on my path to a better life. I still didn’t know what the bigger picture was but I was confident I would be healthy and happy doing it.
Two weeks later with all my past medical records in hand, I sat waiting for the endocrinologists. They walked into the exam room and without knowing any of my previous medical history Dr. Van Herle shook my hand and said, “So it looks like you are here because you have Cushing’s.”
I could barely speak, but managed to stutter, “I I I I I-do, don’t I?” The doctor said, “Well you look like you do.” After seven years begging doctors to listen to me I almost fainted. Dr. Cohan completed the medical protocol and confirmed I did have Cushing’s disease, a secondary disease caused by an ACTH over-producing pituitary tumor and I would need surgery.
Soon they introduced me to Dr. Daniel Kelly. But Dr. Kelly had a difficult challenge ahead of him. Unfortunately, about 30 percent of ACTH-producing tumors are too small to be seen on a MRI and although my medical testing indicated the tumor was in my pituitary gland, my MRI was negative. There was a chance Dr. Kelly wouldn’t find the brain tumor and I would not be in remission. So I needed an IPSS, a procedure that would confirm the source of the disease was the pituitary gland. So I went in the hospital for the procedures, and out of the blue, my client who sold medical devices happened to be there that day and she sat with me and waited until they were ready to take me in for the procedure….What were the odds of that?
Dr. Cohan came to stay with me while they prepped me for the procedure. Dr. Kelly had left the country on vacation but he’d emailed Dr. Cohan that morning. Dr. Kelly asked Dr. Cohan to let me know they were going to do everything they could to help me get well. That was the first time in seven years that any medical professionals actually cared about me and my health. It was the first time I had real hope that I’d be okay.
On the next Sunday morning at my spiritual I sat quietly during prayer and meditation. With surgery still a week away I was hoping for some insight about the location of this tiny tumor that was causing so much havoc in my life. I asked the universe for more confirmation that I was going to have my health back. That’s when I got a sharp pain right in the middle of the left side of my head. It scared me at first, but I stayed focused on my meditation asking the universe to help Dr. Kelly find the tumor. Then the pain stopped and I was 100 percent sure the tumor was on my left front side of the pituitary right in the middle of the gland. However, I wasn’t sure how to explain all of this to Dr. Kelly without him thinking I was nuts. After all, I wasn’t 100 percent sure I wasn’t nuts… Dr. Kelly is an amazing person, as well as, an amazing neurosurgeon and he welcomed the information. Before surgery Dr. Kelly told me, “Sharmyn, the only place on your MRI that look suspicious is the left front side, right in the middle, and that’s where I will look first- let’s hope you’re right!”
While I was in the recovery room I can still remember hearing Dr. Kelly say, “Sharmyn the tumor was right where you said it was.” And on April 14, 2000, my angel, Dr. Kelly gave me my health back. But now it was my turn, with the help of the universe, I had to make my life great!
It has been more than sixteen years since my surgery and I am still in remission. God’s bigger picture has been amazing and I live in gratitude every minute. What were the odds that eventually I would help so many others affected by this disease by speaking publicly, writing articles, appearing in magazines, on television and leading a pituitary patient support group and work closely with Dr. Kelly and Dr. Cohan helping patients?
After my surgery I contacted Mr. Smith to let him know how the day we met could have changed the course of my life if he hadn’t said what he did. On the day of the interview I didn’t tell him I was sick, later after my surgery, I wrote and told him everything. He was so touched he invited me to his spiritual center and did a talk with me about what happened in his office that day and he set up an interview on his radio show with Dr. Cohan and Dr. Kelly. He and I still stay in touch.
Ten years ago, Dr. Kelly moved his brain tumor center from UCLA and founded the Pacific Neuroscience Institute in Santa Monica, CA. PNI is one of the most comprehensive neurological Centers of Excellence in the country. Dr. Kelly is world-recognized for the work in minimally invasive endoscopic surgery he does with pituitary tumors, just like I was told so many years ago by my client. Dr. Cohan is still my endocrinologist and works very hard to help many, many pituitary patients with Dr. Kelly and his team at the Pacific Pituitary Disorders Center.
Miracles happen when we realize no matter what the circumstances, we have within ourselves extraordinary strength to a make powerful and positive impact for others and ourselves. With the help of the universe, we turned one of the darkest parts of my life into one of my greatest blessings.
Blessings can show up in many different ways. They can even show up cleverly disguised as an unwanted and undeserved illness. How we view the blessing is up to us.
Please help all of us at the Pacific Neuroscience Institute and the Pituitary Network Association spread the word about pituitary tumors by sharing story and our blog series with family and friends. Now that we have Google and social media it’s easier than ever to help get proper information to people who may depend on it to save their lives.
Our speaker is Dr. Garni Barkhoudarian.
We will live stream on Facebook so I hope you can join us in person or on the Internet.
The PNI website just won the 2016 WebAward for outstanding website in healthcare! Please check it out!
This article originally published online in Pituitary Network Association‘s newsletter.
About the Author
Sharmyn McGraw is a patient advocate, charismatic professional speaker and published author. She has first-hand experience as a Cushing’s disease survivor and often collaborates with nationally-recognized neuro-endocrine experts, sharing the speaker’s platform while educating patients and doctors about neuroendocrine hormonal disorders and their impact on our health as a nation. Sharmyn facilitates the largest pituitary patient support group in the country for the Pacific Neuroscience Institute.
Last updated: October 11th, 2018