Donelle Trotman was only in his 30s when his health suddenly took a strange and frightening turn.
He was rapidly gaining weight — more than 100 pounds in one year. His upper torso was getting bigger, but not his legs. And he felt overwhelmingly tired.
“My body just started changing,” the Staten Island, New York, native told TODAY as part of a three-day series, “Medical Mysteries,” looking at people who have recovered from rare diseases.
It was especially puzzling because Trotman had never had weight issues before.
In school, Trotman was never a skinny kid, but he wasn’t overweight. He loved sports, playing both basketball and baseball.
So as he entered adulthood, he was active and in good shape. Then, three years ago, he suddenly began to gain weight.
“It was just specific places: My stomach, under my arms, my back of my neck, my face, the bottom of my back,” Trotman said. “My legs stayed the same for a long time.”
To lose the extra pounds, Trotman began running, working out and lifting weights. Nothing worked.
In the span of one year, Trotman gained more than 120 pounds, topping the scale at 366 pounds, twice the amount he weighed at 18.
“I doubled, like, I got a whole person on me,” he said.
There were other alarming changes. Trotman became so easily tired that he’d get out of breath just by chewing food. When he woke up seeing double three months ago, he knew it was time to go to the hospital.
Doctors ran a flurry of tests, but the results offered few clues, leaving everyone puzzled. Then one day, an intern noticed stretch marks all over Trotman’s body, a telltale sign that solved the mystery. Trotman had Cushing’s disease, a rare condition that affects fewer than 50,000 people in the U.S. every year.
Trotman’s weight gain was being caused by a tiny tumor at the base of his brain, prompting his body to produce too much of the hormone cortisol. He had some of the classic symptoms: major weight gain in his upper body, skin problems and acne, plus fatigue.
Dr. John Boockvar and Dr. Peter Costantino at New York’s Lenox Hill Hospital discovered Trotman had steroid levels ten times higher than normal.
“In Cushing’s disease, the pituitary gland has a small growth that releases a single hormone that causes the body to live with very high levels of steroids. The skin becomes very thin. You get increased acne. You can grow hair. You start sweating. You gain a lot of fat,” Boockvar said.
There was no time to lose: Untreated, Cushing’s is a fatal disease. Trotman was getting close to the point where doctors would not be able to reverse the changes, Costantino noted. He underwent surgery two weeks ago and had the growth successfully removed.
“The tumor was no bigger than the size of the tip of my pen,” Boockvar said. “And that something so small can cause a man to grow to 350 pounds and absolutely destroy his life is rather remarkable.”
These days, Trotman is feeling much better. His main focus now is to lose the weight he gained and regain an active lifestyle. He hopes to play basketball with his son soon.
“It’s wonderful. Every day it’s just like I feel a little stronger,” he said.
Doctors say Trotman will continue to lose weight and can shoot hoops with his son in about three months. There is an 8-10 percent chance the disease could come back, but Trotman said he knows what to look for now.
One of the reasons Trotman wanted to share his story is so others might recognize the symptoms of Cushing’s, although doctors stress it is a very rare illness.
Dad’s face is twisted in pain. He can’t face the way mom is: the anger and hate she heaps on him. The fear we live with crushes his mild spirit. Dad who could never say anything negative about anyone, pretends life hasn’t changed, mom hasn’t changed and takes comfort in routine.
“You have to drive Mom to Goderich Mental Institute tomorrow. They’re expecting her. Here’s the address and call the doctor.” I shove my notes at him.
The next day, Mom is angry, but gets into the car without a fight. It’s a long, quiet ride until we drive by the ‘Welcome to Goderich’ sign. Then mom says, “You can’t lock me up. I’m not going. Why do you hate me? How will you manage without me? You don’t know how to pay the bills, collect the rent, make meals, do laundry. You can’t do anything without me.”
She’s right. Mom’s the one who looks after us and is business savvy. She’s the one who made the decision to move here. She chose the house. It’s a large flat in downtown Stratford above a parts distribution company. She bought the building so we can get the rent from the business to offset the mortgage. Mom maybe mentally ill, but she is still business savvy and unbeatable at bridge, even though we think she cheats; we can’t catch her.
“Why don’t you tell me off?” Mom screams. “Take charge for once in your life. Be a man! Tell me off!”
There’s a pleading quality to her voice. Then she leans forward from the back seat poking her head between us in the front. Her high pitch shrill fills the car, “Tell me to shut up.”
“Shut up,” Dad yells.
It’s the first time I have ever heard him raise his voice.
And Mom falls back in her seat laughing then crying, relieved that maybe this time he will take charge.
Four months later, we travel this road again to pick mom up and bring her home. We are heading out the double-door exit when mom says, “I don’t know what the doctors will do without me. I confer with them on every case. They rely on my judgment.”
I look at Dad and say, “We’re taking her out like this?”
Dad won’t look at me. He keeps walking, head down, holding mom’s hand.
Once home, living our pretend lives for the neighbours, mom curbs her physical violence with cruel, hurtful remarks. Her verbal attacks can last for an hour or more. I plead with Dad to make her stop, but he always answers with, “It’s the illness, it’s not your mother.”
Like that somehow makes it right when she screams at me, “No one will ever love you.”
For the next two years, Mom hasn’t shown any signs of violence and I find myself wondering if she really is schizophrenic. When Mom finds out my boyfriend Bob has proposed to me a couple of times, she makes plans to move to Kitchener to break us up.
Dad of course agrees to the move, but is surprised when once in our new home, mom kicks him out. With only the two of us in the house, mom no longer has to be on guard. Over time, she learns how to break me down, make me cower. I am the one who sent her away. I am the one who has to be punished.
“There are only two people in this world I hate and that’s you and your father. But I hate you more because you were the one who sent me away. I hate you.” Her spittle flicks onto my skin. “I hate you. I hate you. I hate you.”
She knows how to push me into a corner without ever touching me. Making me back away from her and her vicious words, cringing until my back hits the wall with no escape. I can’t retaliate with hurtful words or even the truth because it gets too scary when I push back.
This goes on for months on end. She’s right. I’m to blame for sending her to that place which didn’t help her and now there are two of us who are broken. Because I never want to be in charge ever again. I will never make decisions where things will be my fault. I will be a follower. Broken. Indecisive. Afraid.
Eighteen and in grade thirteen, I dread going home after school and work. I try being invisible, tip toeing around, avoiding any kind of interaction. I can’t sleep, her words torment me. Even alone in bed at night, I tremble, my body twitching for hours with me unable to control it, afraid that her demons will get me while I sleep.
I get up to get a glass of milk. The glass shakes so bad in my hand, I can’t drink from it and put it down when I hear a quiet knock at the kitchen door. I don’t know why I’m not afraid to open the door. It’s late.
Bob is there. I can’t stop trembling when I tell him what’s happening. He is the only one who cares about me.
“You can’t live like this anymore,” he says taking charge, confident and controlling. The opposite of my Dad. Bob is the person, I wish my Dad was.
“We’re getting married,” Bob says.
My White Knight, my hero rescuing me from this life to give me a happily ever after.
The crackly voice interrupts the music again, “Code White, Code White.”
***
Something so scary happening that they have to use a code to bring nurses and security guards on the run.
Shifting in bed, tugging at the blue gown to close the gap at the back, I feel the poetic justice of it all. My mother, forty-years later, finding a way to punish me from the grave, for sending her to the asylum, to make me crazy like her.
I can’t fight back, have no breath to plead. She pulls out a butcher knife. The one we use at Christmas and Thanksgiving to carve every turkey. The wide 16 inch blade looks more like a guillotine above my head and I know mom’s hand is positioned for that kind of thrust.
I look away, waiting for the blow I know will come and see my 11- year-old neighbour’s face pressed against our glass front door, Girl Guide cookies in her hand, eyes wide.
“Run. Get out!” I yell.
She’s frozen like me.
“Get out now,” I bellow louder.
Startled, my mother puts the knife down just as the cookies hit the cement front stoop and my neighbour disappears from view.
Mom sits at the kitchen table with pen and paper. “What’s happening to me? What am I doing? There’s something wrong with me,” she says. Mom mumbles symptoms to herself, scribbling them on the page. As the list grows longer, mom becomes more agitated until she crumples the paper up and throws it. “There’s nothing wrong with me,” she screams.
I run out of the house, down four blocks to the doctor’s office, burst through the door and say, “I need to see the doctor.”
“Do you have an appointment?” the receptionist asks.
“No.”
“Take a seat.”
I can’t sit. I pace back and forth in the crowded waiting area. I stay quiet while another name is called, and a man follows the nurse down a hallway.
My body shakes and my head vibrates until the man comes out, and then I scream at the nurse, “I have to see the doctor.”
“What’s wrong?”
“My mother tried to kill me.”
The nurse leads me into the doctor’s office. I relate my story to the doctor who advises me that mom is paranoid schizophrenic and warns me that in her present condition she may be suicidal. He reassures me that at the end of the day he will stop by my house to examine my mother.
Fearing for Mom’s safety, I run back home to check on her. She is sitting beside the record player, smiling her big-toothed grin with Elvis stuttering, the lyrics caught in the scratches on the vinyl. Mom not noticing. Mom stuck in her own groove trying to block out her voices.
Afraid that Mom will overhear me on the phone, I leave to find a phone booth and call Dad’s office in Kitchener, a 40 minute drive from our home in Stratford. It is two hours before the office will close. I am told he is out for the day. He left no contact number where he can be reached. There’s no one to call. I don’t know why we had to move here away from family and friends.
And I’m not calling my sister Jackie at university. She’ll want to come home. One of us needs to escape this life. Dad’s no help. It’s up to me.
I’m relieved when the doctor finally arrives to examine my mother.
“Can’t you turn that off,” the doctor motions to the record player while Elvis stutters.
“It helps keep her calm.” My words breathy, pushing past the overwhelming emotion of letting go of the responsibility to have someone else in charge. Relief at last.
He moves his stethoscope over mom’s back. “At least change the record.”
I welcome the excuse to walk away. I pull the record stand over by the couch and sit down. It would have been easier to sit in mom’s chair to sort through the records, but I won’t sit in her chair doing what she does, afraid that it will turn me into her.
They are talking in quiet tones. Mom almost whispering her answers. I can breath again. I don’t care what they’re saying. He’s taking over, so I don’t have to be in charge any more.
When the doctor finishes, he sends mom over to her chair by the record player. I put on The Beatles “Hey Jude” another one of her favourites. The lyrics, ”to make it better,” vibrating through my body while I walk to the dining room table. The doctor is talking to me, but it’s the Beatles I hear singing better, better, better. The sound escalating better, better, better and I’m afraid to hope.
“Where’s your father?
“I don’t know.”
“When does he usually get home?”
“Not until late. Not until mom goes to bed.”
We discuss the need for her to be hospitalized.
“She is paranoid schizophrenic,” he says and advises me which mental asylum she will be put into and the procedures he will implement. I take notes to relay the information to my Dad when he shows up.
“How old are you?” he asks.
“Sixteen.”
“Do you have any relatives or adults that can stay with you here until your father gets home?”
“No. There’s no one. We just moved here.”
The doctor speaks to me like an adult and all of the decisions are made by the two of us. He writes his phone number on a prescription pad, rips it off and hands it to me.
“Have your father call me when he gets in,” he says. “If anything else happens before he gets home, get out of the house and call me.”
“Thanks,” I say, watching him walk out the front door.
Dad gets home at 11pm.
“Where were you?” I ask. “I called all over.”
“I had to go vote. It’s election day.”
“You left me by myself when you knew this was the worst mom has ever been. You didn’t even leave a number where I could reach you.” I glared at him in silence until he looked down at his scuffed oxford shoes.
“I had an obligation to vote,” he says.
“What about me?” I yelled. “You have an obligation to make sure I’m safe.”
“It’s my civic duty to vote.”
His words knock the fight out of me. How can I argue my life is more important than voting? Why would I need to? Why can’t he see? I can’t hear the lame excuses that are more important than me. It will hurt too much.
Janice writes: I have written a memoir about my experiences with Cushing’s Disease. An agent is interested in it but says I have to have a platform before she will represent me. So I need a following. I want this book to get out to show people the effects of Cushing’s in our lives and to help the families going through this to better help and understand the person suffering with this disease. In the book I mention this site. Unfortunately I found it after I already had the pit surgery. I have also written a play based on my memoir. I am on a mission to inform people of this disease.
I will be adding to this post on Wednesday, Friday and Monday for people who wish to follow me.
The following is an excerpt from my memoir which is about Mary O’s site and the people on it.
“Looking up medical references, I find a Cushing’s help and support internet site, founded by Mary O with over 6,000 members world wide. Story after story all screaming the same thing: believe me, listen to me, I’m sick. Doctors telling them to diet and exercise or that this is such a rare disease they can’t possibly have it. Excuses to dismiss us. It isn’t that the doctors don’t have the knowledge, they won’t believe us. So many, too many, my story isn’t unique. I am the rule and not the exception. I have to make people believe us and so I write.
WHEN ANGELS KNOCK
By
Janice Barrett
I wake up aware that I’m on display. There are no tracks in the ceiling for curtains to be drawn around my bed like most hospitals. I want to stick my thumbs into my ears and wiggle my fingers saying, “booga booga,” but know this is not the place or time. These people will not have a sense of humour. The white ceiling melts into bare white walls oozing an antiseptic smell. I know why I’m here. I went crazy. I felt the snap.
A crackly voice over a speaker announces, “Code White.”
I’m thirsty, but beside my bed the water bottle is empty.
“Code White.”
Built into the room is an office with a glass partition where a nurse is standing. The mattress crinkles like plastic under the sheet when I roll out of the single bed, in a row of single beds. Walking up to the window, without saying anything, I slide my empty bottle through a circular hole in the middle of the glass and she, without saying anything, passes a full bottle back to me. I saw this once in a movie and I know I’m in lockdown. She is Nurse Ratched and I’m in my own sequel to “One Flew Over The Cuckoo’s Nest.”
I don’t want to be crazy like my mother. Death was her escape. I don’t want my children to live with the on-edge fear I did. Afraid that something they will do or say will trigger a psychotic episode and make them feel responsible.
“Code White.”
Music replaces the crackly voice, and I think of mom’s favourite song and her sitting beside the record player for hours on end with me hoping I’m safe. I lived in that world of “if only” for too long.
If only I hadn’t wanted toast.
***
I was safe at high school when my name was called after the morning announcements to come down to the Principal’s office. Dad was there. He said mom isn’t “feeling well.” I hate those words, his code words for scary psychotic. And I have to go home to look after her.
Mom looks okay, hair and make-up done to perfection, listening to Elvis Presley’s “Blue Christmas.” But I never know when they will come, the voices in her head.
As long as the record plays, I’m safe. It’s her distraction from the voices. Five hours and still when the needle lifts off the vinyl, mom’s hand reaches across to replace it again.
I keep mom in sight in the livingroom when I go to the kitchen to make toast. The wooden door on the breadbox hangs lopsided, the hinges pulled out from the wood, the handle broken, a thin post lying on the countertop. Mom is watching me. I pretend I don’t notice the breadbox hoping then she won’t react.
The needle scratches across Elvis’s lyrics, and I’m sorry that I wanted toast.
She bolts out of her chair and I freeze when I see her hazel eyes bright with her demons.
“He’s coming back to kill me. The breadbox slammed down three times to warn me that your dad is going to kill me with a gun or knife,” Mom says. “Please don’t leave me. Your dad manipulates people, he controls them,” she screams.
The cords in her neck protrude and her lips stretch to a thin line to spit out her phobia. “We’re his puppets. He’s pulling the strings making us do things.
Hate etches her skin, pinching her nose, turning her hazel eyes into green, glowering slits. Numbed by fear, I can’t move, can’t speak, my body vibrating.
Mom’s hands are on my shoulder shaking me to make me understand her terror. Her fingers kneeding into my skin, nails digging viciously when she throws me up against the kitchen cupboard. My head pounds the wood and I hear a small crack before she slams my numb body against a cabinet shrieking, “You control people too. Who do you control? I want their names.”
I try to get away, but she thrusts me back, a pull handle on a drawer jabbing into my hip.
“Give me the names,” she yells, and hurls me backward onto the countertop. I gasp, gulping for air when she hammers her arm down across my chest. Her arm, a metal bar, that holds me down, while her boney elbow scores into my ribs. Her eyes are as terrified as mine. Her weight crushes me as she opens the knife drawer by my left hip. The sound of metal blades clang while Elvis croons, “without you.” And I am frozen.
Lydia, a 28-year-old Florida resident, wife, and mother of two, first noticed a drastic increase in her weight around Easter of 2022 in a family photo. She was shocked by how different she looked despite not making any drastic changes to her diet. “While those I loved would say ‘you look beautiful’, to me I looked like a completely different person,” recalled Lydia.
When Lydia asked her mother, Jeanne, if she had noticed her weight gain, her mother observed that some days Lydia’s face looked swollen. They both recognized that this was not normal, and decided, like many pituitary patients, to make an appointment with a primary care provider. “I remember her saying to me ‘something is wrong with me’ and ‘something is not right’”, recalled Jeanne.
Lydia’s weight gain was most noticeable in her face and around her abdomen. “She was exercising all the time and trying to watch what she ate and cut down on sugars,” said Jeanne. “But she kept putting on more weight. We knew something was not right.”
Lydia scheduled the first of what would be many doctor appointments hoping for answers. Her primary care provider recognized that her rapid weight gain was abnormal and ordered standard blood work. When that blood work came back normal, her doctor referred her to an endocrinologist and to her OBGYN.
In addition to her weight gain, Lydia had begun developing other symptoms including excessive sweating day and night, severe acne, hair loss, hair gain on her face, insomnia, thin skin, and brittle nails. “The worst symptom was the constant feeling of fight or flight,” recalled Lydia. “I always felt on edge and was letting things bother me.” Lydia would later learn that this feeling was caused by the drastic increase of cortisol in her body.
When Lydia first met with her OBGYN to address her weight gain and the overall feeling that something was wrong with her body, her concerns were quickly dismissed. “He told me ‘You’re almost 30 and you’ve had two kids, no wonder you feel the way that you do,’” said Lydia. “He blew me off and told me that I needed more diet and exercise. He didn’t order other tests.”
Figure illustrates the drastic physical changes and symptoms caused by a pituitary tumor and Cushing’s disease. (Medical illustration by Mark Schornak, MS, CMI)
A couple of months later, Lydia went to see an endocrinologist. Despite watching her calories and exercising almost every day of the week, she had gained more weight and felt more miserable. When her labs came back, Lydia’s cortisol levels were so high that the endocrinologist thought there had been a lab error. A 24-hour urine test confirmed that Lydia’s cortisol levels were off the charts. “I was in full panic mode at this point,” said Lydia.
Lydia could not get back in to see her endocrinologist in a timely manner, so she ended up back at her primary care provider’s office. Her primary care provider suggested that it could be a tumor on her adrenal glands and that it was probably not in her brain since she was not experiencing headaches. A CT scan of the adrenal glands came back clean. “I remember telling my primary care doctor ‘I just don’t feel normal’”, recalls Lydia. “His response was ‘everyone’s normal is different’ and I told him ‘I’m not normal for me.’”
At this point, Lydia was desperate for answers. “All these doctors were telling me it could be in my head or because I was almost 30,” said Lydia. “I kept getting shut down. I told friends and family that there was something seriously wrong with me and no one was believing me.”
Finally, a friend sent Lydia information on another endocrinologist in Florida. “He was the first doctor to care about me,” said Lydia. “He said, ‘I’m so sorry you’ve been treated like this. Everyone you have seen before me is an idiot.’” More specific bloodwork and an MRI confirmed that Lydia had a macroadenoma, a benign tumor in the pituitary gland, and Cushing’s disease. After the diagnosis, Lydia was told that she would need to have the tumor removed. “He told me, ‘Find where you want to go and I’ll refer you,’” said Lydia.
Lydia and her mother Jeanne began searching online for the right pituitary tumor surgeon. “Once I realized how serious it was, we started researching different doctors,” recalled Jeanne.
Both Lydia and Jeanne spent time researching different doctors, but could not find a doctor that had experience treating Cushing’s disease. “We researched all kinds of surgeons to find the best one,” said Jeanne. “Then we found Dr. Oyesiku. He understood Cushing’s disease. That was important to me.” Jeanne is the one who found world-renowned pituitary tumor surgeon, Dr. Nelson Oyesiku. “I called him and said, ‘I have a 28-year-old daughter with a pituitary tumor and Cushing’s disease and I need you to operate on her,’” said Jeanne.
Dr. Oyesiku has performed over 4,000 pituitary tumor operations and is currently the Chair of the Department of Neurosurgery at UNC Health. “Cushing’s is a rare disease so not many surgeons have a lot of experience with the various technical nuances required to achieve a high likelihood of cure and reduce the incidence of re-operations and complications,” said Dr. Oyesiku.
Since Lydia lives in Florida, her initial consultation with Dr. Oyesiku was over Zoom. “I Zoomed with another local neurosurgeon and I was going back and forth,” said Lydia. “Dr. Oyesiku told me that he looks at the whole picture and what the tumor is doing to you. He said that he wanted to get the tumor out and then cure the Cushing’s disease.” Jeanne was also with her daughter during the initial Zoom appointment with Dr. Oyesiku. “I couldn’t find anyone else that had that background knowledge for Cushing’s disease,” said Jeanne.
Dr. Oyesiku ordered more labs. “He told me ‘I want to measure twice and cut once,’” recalled Lydia. “That phrase is something my dad always said growing up and that felt like fate. So that made my decision for me and made me want to see him.”
After her initial consultation with Dr. Oyesiku, both Lydia and her mother felt confident that they had found the right surgeon. Lydia met with Dr.Oyesiku in December of 2022, then had her surgery on January 23, 2023. “I called UNC and made sure that I could go in with her and stay while she was recovering,” said Jeanne. “We had contacted a different hospital early on, and I would have had to drop her off and not see her until after her surgery and only during visiting hours.”
Patient coordinator David Baker, who also played an important role in Lydia’s care, helped Lydia and Jeanne find a local hotel for them to stay in before surgery at a discounted rate. After surgery, UNC Health endocrinologist Dr. Atil Kargi spoke with Lydia and her mom to help them understand the severity of Cushing’s disease and the importance of monitoring Lydia closely. “Dr. Kargi and David Baker really helped us to truly understand Cushing’s disease,” said Jeanne.
Jeanne was impressed with the level of patient care that Lydia experienced during her surgery at UNC Health. “Lydia had her own nurse that would text me or call me to let me know how things were progressing.” Jeanne said. Jeanne explained that the same nurse was with her daughter going into the surgery and when she woke up after the surgery. She was also able to stay with Lydia in the hospital while she recovered from the surgery. “UNC was such an uplifting place. All these residents, they all love what they’re doing,” said Jeanne.
Lydia stayed in the hospital for six days so Dr. Oyesiku and the endocrine team could monitor her levels. “I was in the normal range, and then I started to tank,” said Lydia. “I had read that a lot of patients are sent home right after surgery. If they would have sent me, I would have been adrenally insufficient.”
Lydia also expressed gratitude for ENT surgeon, Dr. Brian Thorp. “During my surgery, Dr. Thorp also repaired my deviated septum,” said Lydia. “Even after surgery when I was home miles away in Florida, he was always available to me. I appreciate Dr. Oyesiku and everyone at UNC,” said Lydia. “I can’t imagine going anywhere else for this. Dr. Oyesiku truly saved my life.”
After her discharge, Jeanne drove Lydia back to Florida. “Dr. Oyesiku followed-up after surgery with the Cushing’s disease treatment,” said Jeanne. “Our local endocrinologist could not believe how fast she recovered.” Jeanne also noted that she was always able to get ahold of Dr. Oyesiku, Dr. Thorp, or David Baker to answer her questions. “You feel like you’re their only patient,” said Jeanne. “We are 8-9 hours away, and it didn’t feel like it.”
After Lydia weaned off of her medication, she started to lose weight, her face changed, and her body started to feel “normal” again. “My biggest symptom that I am thankful went away was my literally going crazy feeling,” said Lydia. “I am very thankful that I was able to catch it early enough so that this awful disease didn’t leave me with any lifelong complications.”
Lydia, like many pituitary tumor patients, still has lingering feelings of anxiety and frustration with the long road from initial symptoms to diagnosis. It takes the average pituitary tumor patient 5-8 years to be properly diagnosed. Lydia and her mother were extremely proactive and still spent 18 months looking for answers. Lydia went to her primary care provider, her OB, a second OB, and two endocrinologists before she had a proper diagnosis. “Cushing’s disease can mimic many other vastly common medical disorders and is often misdiagnosed or mistaken for something else such as diabetes, hypertension, obesity, infertility, depression, or autoimmune disorders,” said Dr. Oyesiku. “Making the diagnosis requires expert clinical acumen supported by sophisticated medical tests, and many of these tests have to be repeated to confirm the diagnosis.”
Because Cushing’s disease is so rare, many of the providers that initially saw Lydia dismissed it. After her surgery, Lydia returned to her OB office in Florida for her annual exam and was seen by the OB that told her that her symptoms were “all in her head”. “I told him, ‘Remember that you blew me off? I had a brain tumor that caused Cushing’s disease,’” said Lydia. “He told me that in all his years practicing, he had never had a patient with an endocrine disorder caused by a pituitary tumor.”
Lydia’s story and other pituitary tumor patient stories serve as a reminder that while Cushing’s disease is rare, it is worth ruling out when a patient complains of these symptoms. “Part of the problem is that people just do not have access to good doctors,” said Jeanne. “If we had not had that endocrinologist, I don’t know how much longer it would have taken. It makes me sad that other women and even men can have it for so long because they cannot figure out what is going on.”
Both Jeanne and Lydia are thankful that the surgery was a success, but the symptoms and long road to a diagnosis left Lydia with a few emotional scars. “I’m fine and healthy on paper, but still battling the mental aspects and the toll it took on me,” said Lydia. “Sometimes I feel resentful because it took away a year and a half of my life. I feel very blessed to be on the other side of this disease, but I’m ready to not be a patient anymore.”
In 2011, I realized I had Cushing’s Syndrome. I was a 30 year old male with several complications: swollen feet, swollen legs, stomach looked 9 months pregnant, hair fell out, memory loss, couldn’t sleep, couldn’t eat, diabetes, mood swings, depression, urination every hour during the night, bright pink stretch marks, etc.
After changing my doctors several times for misdiagnosis, I was finally tested for Cushing’s Disease/Syndrome. I contacted the National Institute of Health and doctors advised me to come in immediately. I survived 2 months living at NIH, while doctors ran several tests to determine if I had Cushing’s Disease or Cushing’s Syndrome. I had Cushing’s Syndrome and my tumor was found in my right adrenal gland.
After sucessful surgery, I did not have the energy to get out of the bed for almost a month. I was taking almost 10 pills per day including cortisol, high blood pressure medication, potassium, etc. I lost 40 pounds after surgery going from 208 pounds to 168 pounds and after 6 months, I was taken off all medication. I beat Cushing’s Syndrome and Diabetes!
Now, I am 32 years old. I am in great shape and finally got my life back. I do not have any complications. The only sign of Cushing’s Syndrome are the stretch marks and a scar from removing the tumor from my adrenal gland.
I just wanted to meet other people going through a bad disease and help out if possible. I am here if anyone has questions or just want to talk.
When Amber Denney bought life and critical condition insurance from Bank of New Zealand, she thought it would help pay her mortgage, if she ever fell so seriously ill she could not work.
But when she contracted a debilitating and life-threatening brain tumour, BNZ’s insurance proved worthless.
Denney was diagnosed with a pituitary tumour in 2020, and underwent brain surgery, several years after symptoms emerged, including rapid weight gain, muscle loss, brain fog, fatigue, depression and severe headaches.
But despite her neurosurgeon saying Denney fitted the criteria to succeed in her $52,000 claim, BNZ Life Insurance declined the claim, after taking six months to come to a decision.
As a result of her illness, Denney was unable to work, and lost the home she bought when she was 21. She wonders to this day, if the insurance money would have allowed her to save it.
At a time Denney, now aged 26 and renting in Hamilton, was losing her home, banks were working to make sure people did not lose their homes in the economic disruption of the Covid-19 pandemic.
BNZ refused to comment on whether the insurance it sold had failed Denney in her time of need. But Partners Life, which bought BNZ Life Insurance after her claim was decided has promised to take a fresh look at her case.
Denney has yet to concede defeat to her insurer, and may take a claim to the Banking Ombudsman claiming service failure by BNZ, and the Insurance and Financial Services Ombudsman over the decision by BNZ Life to decline her claim.
But she says she is speaking out to warn others that their insurance may be much more limited than they think, and fail them at their time of direst need.
Her cluster of debilitating symptoms resulting from the pituitary tumour is called Cushing’s Disease.
“I’m not the only Cushing’s person who has had this trouble with the insurance companies,” she says.
“The endocrinologist told me about all the other people who have been struggling,” says Denney, who before her illness was fit enough to climb mountains and shear sheep.
There were several critical failures of the critical condition insurance BNZ sold her, according to Denney and insurance lawyer Tim Gunn, who is helping Denney pro bono.
While the BNZ Life policy did cover pituitary tumours, there were two caveats.
First, it had to produce neurological damage, and functional impairment, which a specialist considered to be permanent.
Second, it had to be removed by a craniotomy, surgery that requires cutting through the skull.
Gunn says the requirement for a craniotomy is unreasonable, unfair and outdated.
In recent decades the primary surgical option for pituitary tumours was not a craniotomy, but keyhole surgery, which was used to save Denney’s life.
“The method of surgery to remove the tumour was the most current and accepted method,” Gunn said, and was now used in 95% of pituitary tumour surgeries.
Craniotomy surgery carries a higher risk and was not as effective, he says, and requiring it was unreasonable.
But Denney and Gunn say the policy was also fatally flawed because it could not do what she was sold the policy for in the case of a policyholder contracting a pituitary tumour.
It takes so much time for medical specialists to conclude that damage is permanent after an operation, that paying a claim in time to help save a policyholder’s home is not possible, Denney maintains.
One communication from BNZ Life dated September 2021, told Denney that despite her being diagnosed in July 2020, operated on in September 2020 during the level 4 lockdown, proof of permanency had still not been established.
Denney says she has been left with permanent memory loss, severe headaches, and other symptoms of Cushing’s Disease, and can’t understand why BNZ Life is not paying.
“It’s blatantly obvious. I’m struggling. I just don’t get it. It’s extremely unfair,” she says.
“BNZ has failed in their responsibility to ensure that Ms Denney was adequately protected,” Gunn says.
Denney says one horrified BNZ worker told her not to let the bank win.
“She advised me, it was her exact words, ‘If you have the energy to fight, fight them until the end’,” she says.
BNZ would not answer the allegations, saying only that all BNZ Life’s records had moved to Partners Life, though Denney remains a BNZ customer.
BNZ had sold the business to Partners Life, which has in turn been sold to Japanese insurer Dai-ichi Life.
Partners Life has promised to review the decision taken by BNZ Life to turn Denney’s claim down.
It said BNZ Life’s conclusion was that while the condition Denney suffered was most certainly traumatic, it was not covered under the definitions in the policy wordings.
Critical condition (often called critical illness) insurance was not designed to cover every possible health emergency, it said, but did not comment on the specific allegations Denney and Gunn have made, as it had only been alerted to them by Stuff.
It said it would contact Denney about the review of BNZ Life’s decision to decline her claim.
Partners Life says its claims philosophy is that, “if it’s grey, we pay”, and “where the medical information is unclear or conflicting, we will remove the uncertainty and simply pay your claim”.
Denney said her surgery saved her life, and her weight has dropped by 35kg.
Doctors told her in 2020 that without the surgery she would have two years to live.
“I’ve passed that two years now, so every day’s given to me now,” she says.
At its worst, Denney’s symptoms were so bad, she was unable to work for nearly two years, though her life is on the up, and she is once again dreaming about buying a home.
She has landed a job at a supportive employer in Hamilton.
Best friends Charly Clive and Ellen Robertson thought carefully about what to call the tumour that was growing in Charly’s brain.
The doctors had their own name for the golf-ball-sized growth sitting right behind Charly’s left eye — a pituitary adenoma — but the friends decided they needed something less scary. They flirted with calling it Terry Wogan (‘as in Pitui-Terry Wogan,’ says Ellen), but that didn’t seem quite right.
So Britney Spears fan Charly, then 23, suggested Britney. Bingo! Not only was she ‘iconic and fabulous’, but Britney was also one of life’s survivors. From then on, they were a threesome — Charly, Ellen and Britney the brain tumour — although Ellen is at pains to point out that this Britney was never a friend.
What a thing to have to deal with, so young. The pair, who met at school in rural Oxfordshire, are now actresses. Charly’s biggest role to date has been in the critically acclaimed 2019 Channel 4 series Pure, while Ellen starred in the Agatha Christie mini-series The Pale Horse.
But this week they appeared together in Britney, a BBC comedy based on the story of Charly’s brain tumour. The TV pilot (and yes, they are hoping for a full series) is an expansion of a sell-out stage show they performed at the Edinburgh Fringe in 2016.
The production is admittedly surreal. Viewers are led inside Charly’s brain and the show includes a scene where Charly dons an inflatable sumo-wrestler suit on the day of her diagnosis. Poetic licence? No, it really happened.
‘My dad’s mate had given him a sumo suit as a silly Christmas present and so, on Doomsday, we took photos of me in it.’
The tone was set for how these friends would deal with the biggest challenge of their lives: they would laugh through it, somehow.
As the women, now 28, point out, what was the alternative?
Charly says: ‘It was that thing of laughing at the monster so you are not scared of it. If you cry when do you stop? It was easier to make light of it.’
Their show is not really about a brain tumour. It’s a celebration of friendship. Ellen pretty much moved in with Charly’s family during this time (‘To be in place when I exploded, so she could pick up the debris,’ says Charly).
The pair live together today, finishing each other’s sentences as we speak on Zoom — and at one point both miming Charly’s brain surgery (with gruesome sound effects).
This sort of silliness rooted their friendship, which started at the age of 14 when they wrote their own plays (Finding Emo, anyone?) while at school together in Abingdon. Charly later moved to New York to study dramatic arts, and Ellen studied at Cambridge.
In 2015, Charly came home for a visit, and went to see her GP (played in the drama by Omid Djalili) about her lack of periods and a blind spot in her peripheral vision. An MRI scan showed a mass on her brain. ‘They said it had eroded the bone in my nose and was pressing on the optic nerve, and it was lucky we had caught it,’ she says. ‘The next step would have been discovering it because I’d gone blind.’
Even worse, the tumour was so close to her carotid artery that removal might kill her — and they still had no idea if it was cancerous. Into the breach stepped Ellen. ‘I saw it as my job to make her laugh, which is what I’d always done anyway,’ she says. They both talk of toppling into limbo, ‘almost like a fantasy world’, says Charly. ‘As I was going through the tests, we’d do impressions of the doctors and create our own scenarios.’
The friends talk about sitting up into the night, watching TV. There is a touching moment when Charly admits she was afraid to sleep, and Ellen knew it. ‘It’s hard when you are thinking “What if the tumour grows another inch in the night and I don’t wake up?” ’
Charly was operated on in March 2016, and Ellen remembers the anaesthetist confiding that Charly’s heart had stopped on the operating table.
‘He wasn’t the most tactful person we’ve ever met. He said “Oh my God, guys, she died”.’ Charly makes a jazz hands gesture. ‘And guess who is alive again?’ Even at that darkest moment, there were flashes of humour. Ellen laughs at the memory of the surgeon in his scrubs, with wellies on. ‘They had blood on them. I was transfixed. I wanted to ask “Is that Charly’s . . . brain blood?” ’
In the stage version of the show, the anaesthetist gets two full scenes. ‘He’s the heartthrob of the piece,’ says Charly. ‘A sexy rugger bloke who is crap at talking to people.’
The days that followed the surgery were hideous — and yet they, too, have been mined for comedy. Charly’s face was bandaged, ‘as if I’d had a Beverly Hills facelift’, and she was warned that she could not sneeze. ‘If I did, bits of my brain would come out my nose,’ she says.
Ellen read her extracts from Harry Potter but ‘made them smutty’, which confused the already confused Charly further. ‘I was drug-addled and not myself, and in the most bizarre pain, concentrated in my face’.
‘That week after the surgery was the worst part of all,’ says Ellen, suddenly serious. ‘She was behaving oddly and there was this unacknowledged fear: was this Charly for ever?’ Oh, the relief when the old Charly eventually re-emerged — albeit a more fragile, often tearful version.
It was Ellen who persuaded Charly to take their stage show about her illness public — and it went on to win much critical acclaim. ‘I wanted Charly to see it as something other than just this rubbish chapter that needed to be forgotten about,’ says Ellen.
For her part, Charly credits her best friend as her saviour: ‘I don’t know how I would have got through it all without Ellen.’
The good news is that Britney was not cancerous, although surgery did not obliterate her entirely. ‘She’s still there, but tiny — just a sludge. I’ve been told that she won’t grow though. If I ever do get another brain tumour, it won’t be Britney.’
Off they go again, imagining what is happening now inside Charly’s brain. ‘Britney is still in there, trying on outfits for a comeback tour, but it won’t happen,’ says Charly. Ellen nods. ‘It’s over,’ she says. ‘But she’s just left a pair of shoes behind.’
Britney is available to watch on BBC Three and BBC iPlayer
My story spands over 20 years and may sound familiar to many with Cushings who read this. The first clue came when I was diagnosed at 19 yrs old with a thyroid tumor. The tumor turned out to be both solid and cystic… Cushings is a cystic disease.
Shortly after my thyroid surgery, I developed difficulties with having regular menstrual cycle. I was diagnosed with PCOS… Cushings is a cystic disease.
In the following years, I went up and down with my weight until I finally was 80lbs over and unable to lose any; I slowly lost my hair; I developed stretch marks in my abdomen and chest area; and I developed hypertension, diabetes, and bad cholesterol problems at a young age. I went to my doctor for help and was told I just needed to lose weight.
My symptoms kept getting worse with time.
In July of 2003 changed jobs and was hired by Dr Johnny Delashaw, Neurosurgeon @OHSU. This was a day of blessings in more way than one. Accepting this position brought changes to my professional career and BIG changes to my life.
As part of my job, Dr Delashaw asked me to work with the Pituitary Diseases Clinic and Dr Bill Ludlam. I was more than happy and very enthusiastic as my professional background is in Internal Medicine.
In the beginning, I was interviewing patients to get them ready for surgery and I would also see them for their 2 week post-ops. Soon after that, I got involved in conducting endocrine testing with Dr Ludlam. This was my information gathering stage.
Not long after that, I came to the realization that I may have Cushings and the thought scared me. It took me a month or so to gather enough courage to talk to Dr Ludlam and discuss my fears. (If anyone out there knows Dr L, you know how funny my last statement is since he is the most kind and caring of doctors). He LISTENED to me and did not make me feel like a fraud. I felt legitimate.
We ran the tests and did the MRI and – BOOM – I had a very large pituitary tumor and high cortisol levels. I was surprised but then not surprised.
I have undergone 2 pituitary surgeries with the second one resulting in a complete hypophysectomy. Despite no pituitary, I continued to have symptoms along with high levels of ACTH and cortisol and eventually had a BLA in Sept 2004.
I struggled through withdrawals after my BLA but like a trooper, I returned to work within a month. Thank God I worked for Dr Delashaw who was very understanding. I was doing well for a few months but then in March 2005 I started to have symptoms again. Recent tests show ectopic cortisol production so now I’m waiting to go through the work-up to find the ectopic tissue.
I believe, as well as my doctors, that I’ve had Cushings for at least 20 years if not more. This disease has caused me to develop other conditions that increase my mortality and morbidity. Ironically, as I was going through Physician Assistant school… I jokingly (halfway) thought I had Cushings Disease as we studied it in class. I should have pursued it more but people with Cushings understand how this disease plays with one’s mind.
I am not sure when or if I will get over this disease, but I can tell you….
I am grateful… I am blessed… but most of all, I am hopeful…
Update December 12, 2013:
It’s been 10 years now since I had my “cure” for Cushings. I am one of those rare people who have had both a complete hypophysectomy and bilateral adrenalectomy. I have had my ups and downs over the years but can honestly say I am in a good place now both physically and mentally.
I just wanted people to know that I am back in the Pacific Northwest working at Swedish Neuroscience Institute with Dr. Johnny Delshaw again – the team is back! Please don’t hesitate to ask me questions. As a healthcare provider and patient, I can be honest with what to expect and I will do what I can to help you through it.
Many thanks to my family and friends who have put up with me and helped me while I rediscovered myself after Cushings. God Bless to all!
Welcome to Cushing's Help and Support. This site provides information, support, news, and education for people with Cushing's or other endocrine problems, their friends and families. Cushing's syndrome is a hormonal disorder caused by prolonged exposure of the body's tissues to high levels of cortisol. Cushing's is a debilitating disease which causes the overproduction of […]
Cushing's syndrome (CS) is a rare and severe disease. Acute pancreatitis is the leading cause of hospitalization. The association of the two disease is rare and uncommon. We report the case of a 37-year-old woman admitted in our service for acute pancreatitis and whose Cushing syndrome was diagnosed during hospitalization. The aim of this work […]
For this year, anyone remember Karnac from Johnny Carson? I hold in my hand...? And the cued audience starts cheering, seemingly delighted that this is the last question?
Today is the final day of the Cushing’s Awareness Challenge and I wanted to leave you with this word of advice… To that end, I’m saving some of what I know for future blog posts, maybe even another Cushing’s Awareness Challenge next year.
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