HOUR-LONG seizures, vision loss in the right eye, and failure to complete sentences are among the challenges that 54-year-old Valrie Anderson has been battling for the last 20 years.
These problems stem from a condition called pituitary adenoma, which is a growth or tumour on the pituitary gland in the brain.
In an emailed response shared with the Jamaica Observer, Anderson’s doctor at the University Hospital of the West Indies, Peyton Lawrence outlined her diagnosis, which has to be treated at Miami Neuroscience Center, Larkin Community Hospital in Miami, Florida.
“After having carefully reviewed your patient’s medical information, in my opinion, Ms Valrie Anderson is a candidate for gamma knife radiosurgery for the treatment of her pituitary adenoma,” the email stated.
According to her sister, Winnifred Anderson Plummer, Valrie began showing signs of the condition while she attended high school but her health got worse during her 20s.
She said her sister’s seizures would last for two to three hours, though the typical time span is usually seconds or minutes before the brain cells return to normal.
“When the seizures became more frequent was when we discovered, after MRI [magnetic resonance imaging] tests, that she had a tumour on the brain. A surgery was done in 2013 at UHWI but since that time the tumour has regrown; it has caused her to have more violent seizures before the surgery and they last for longer periods. Even the doctors that are seeing her when she has an attack, they too are dumbfounded about the length of time her body takes to settle,” she explained.
Anderson Plummer stressed that the deterioration of her sister’s condition has been painful for her relatives.
“We remember how Valrie was – a go-getter. When she was at the bank she was the best at what she did. She left the bank and went into sales and it was the same thing. She is not the person who would sit down and watch the world go by, she wants to be a part of what is making the world go by — that is just how Valrie was — and to see her now it is just heart-breaking. She can’t even open a can of milk,” her sister stressed.
“Valrie is a praying person and she believes that one day the Lord will take away this from her, and I think that is what helps to sustain her as well. I know there is something special about Valrie why God is preserving her,” she added.
Valrie is scheduled to complete the surgery at a cost of approximately $3 million in August, but her relatives are facing financial difficulties and might not be able to source the funds that soon.
Anyone wishing to help can reach out to Anderson Plummer’s email: view2change@hotmail.com
A five-year-old girl from Australia who started menstruating at the age of four will soon start exhibiting signs of menopause, a result of Addison’s disease.
Emily Dover’s birth was absolutely ‘normal and happy’. By the second week, however, she started growing at an unusual rate. She was the size of a one-year-old by the time she turned 4-months-old. By the time Emily turned 2, she had developed breast buds, body odour and a rash on her skin that was diagnosed as cystic acne.
In addition to Addison’s disease, Emily has been diagnosed with congenital Adrenal Hyperplasia, Central Precocious Puberty, Autism Spectrum Disorder, Sensory Processing disorder and Anxiety Disorder.
The 5-year-old’s adrenal glands don’t produce enough steroid hormones.
Emily’s mother Tam Dover said her daughter is body conscious and aware that she is different from other children her age, reports Mirror Online. Sadly, the little girl is unable to understand what she is going through.
Constant pain and reduced mobility required Emily to undergo weekly physiotherapy sessions. At present Emily is five years old, and has started menstruating. After she starts a hormone replacement therapy, she will hit menopause, with all the side effects a woman over 50 years of age has to face.
“She hasn’t even had a chance to be a little girl. She’s having to learn how to put panty liners on for menstruating,” Tam tells Mirror Online.
Tam has set up a GoFundMe page to raise money to cover the ‘astronomical’ costs of her daughter’s treatments and medical care.
“Each time her growth was measured it was always way above the 99th percentile, and often 99th percentile for a couple of years above her age,” Tam wrote on the GoFundMe page.
WHEN Katelyn Bonacasa’s face got “red and burning hot” and became a “complete circle”, it was dismissed by doctors as “adult acne” and “postpartum changes”.
After being repeatedly fobbed off for months on end, she decided to do her own research – and was able to get to the bottom of what was really going on.
The first symptoms Katelyn, then 29, noticed was red, bumpy irritation across her chest.
A dermatologist said it had been hormonally triggered and gave her a wash and cream, which cleared it up.
But soon after that her face started to change.
She said: “Moon face was the first major symptom I noticed.
“My face lost all shape and became a complete circle. On top of that, it was red and burning hot all the time.”
Within weeks her hair began falling out and she lost nearly a third of it, while new hair sprouted across her face, from forehead to chin.
Acne erupted across her skin, her body bruised easily, and even the smallest cuts would take months to heal.
“I was literally unrecognisable to myself,” Katelyn admitted.
“I gained 30lbs so quickly, I couldn’t keep my eyes open from fatigue, but I also couldn’t sleep.
“I was depressed, anxious, angry, and constantly on edge. I felt like I was losing my mind.”
Her periods stopped, her thyroid became enlarged, and blood work showed her body wasn’t responding as it should to insulin.
Katelyn recalled: “The hardest part was watching how everything kept getting worse and just hoping it would be reversible one day.”
Yet for eight long months, doctors dismissed her insisting symptoms were “postpartum changes” or “normal for women”.
“I couldn’t even get a sentence out before my first endocrinologist interrupted me to say, ‘You’re fine’,” Katelyn claimed.
“He told me it was probably just postpartum. He ordered the most basic thyroid test, nothing comprehensive, and wrote in his notes that he had ‘no suspicion of anything’.”
Another doctor brushed her skin changes off as adult acne. An OB/GYN told her to try running on a treadmill.
“These things are normal as a woman,” one endocrinologist said flatly.
So Katelyn, from Long Island, New York, began doing her own research.
“I realised the only thing I hadn’t been tested for was Cushing’s disease,” she said.
When repeated blood tests showed cortisol levels three or four times higher than normal, and a urine test came back at 720 when the normal range is 3 to 45, her suspicions were confirmed.
“From the very first time I had blood work done, I never once had a normal cortisol reading,” she said.
“That’s when I knew it had to be Cushing’s.”
Cushing’s disease is caused by having too much of the hormone cortisol in your body and can be caused by a small, non-cancerous growth in the pituitary gland.
Katelyn was sure she finally had an answer and found a neurosurgeon who specialised in pituitary and skull base tumours.
“I asked for a consultation before I even had the MRI, because I was so sure this was what I had and I was right,” she said.
When an MRI confirmed a 1.5cm tumour, she sent her labs and scans to his office. Within eight weeks of that first phone call, she was in surgery.
Katelyn says: “I was the one who connected the dots and pushed for the right tests.
“I trusted myself, and that’s what saved me.”
Now 30, Katelyn has detailed her symptoms and repeated dismissals by doctors on TikTok, reaching thousands of people.
“Since posting my videos, I’ve had hundreds of people messaging me with questions about my journey,” she said.
“It makes me sad that people have to dig through external sources and fight so hard for answers when something as simple as a blood test could change everything.
“A 1.5cm pituitary tumour absolutely wrecked me. Nothing will humble you more than living as a version of yourself you don’t recognise, with zero control over it.
He said she needed to start focusing on looking after herself a bit more in her long journey with tumours of the pituitary gland.
“I have a tendency to do too much for other people,” Mrs Dines said.
“It’s just me. It’s in me, it’s what I do.”
The altruistic devotion is central to her being nominated in the community spirit category in the 2013 Pride of Australia awards.
“There is no end to the depth of Kellie’s passion for people in need,” her testimony said.
“She inspires everybody she comes into contact with to be the very best they can be.”
Pituitary and pineal glands (Photo credit: Wikipedia)
Mrs Dines, 40, is the wife of Brad, mother of Carter, 10, and Hunter, 5, and has lived at Teesdale for two years after having spent her formative years growing up at Wallington and attending Geelong’s Matthew Flinders College. She spent 17 “hideous” years battling mystery ill health and receiving all sorts of diagnoses before the discovery of a non hormone-secreting tumour surrounding her pituitary gland, at the base of her brain.
The pituitary gland secretes hormones that influence the workings of many other glands.
She has twice undergone delicate surgery attempting to remove the tumour and now it is growing around her carotid artery.
Mrs Dines’ community devotions have ranged from volunteering at three consecutive Australian International Airshows to inspiring a Black Saturday bushfires appeal that generated two truckloads of food and goods for fire victims, and volunteering as state co-ordinator for the Australian Pituitary Foundation.
After having shifted to Teesdale, she started co-ordinating money-raising efforts for the community’s pre-school and primary school and ran money-raising events for a local single mum contending with breast cancer and a family that lost a child.
She said nomination in the Pride of Australia awards was humbling. “But it’s not why I do things,” she said.
Nominations in 10 Pride of Australia award categories close on Tuesday.
A 45-year-old female developed clinical and biochemical recurrent Cushings’ Disease 2.5 years after transsphenoidal hypophysectomy for 2cm pituitary macroadenoma.
Past medical history included Type 2 Diabetes mellitus, asthma, hypertension, grade 3 obesity, dyslipidaemia, depression and sleep apnoea. MRI showed residual pituitary tissue with left sphenoid sinus extension.
MDT advised repeat transphenoidal surgery over radiotherapy due to presence of a clearly visible surgical target. Neurosurgery was initially delayed at patient request. She commenced metyrapone, titrated to cortisol levels but this was poorly tolerated. Whilst awaiting neurosurgery, she developed pituitary apoplexy with right sixth nerve palsy and superior quadrantanopia. MRI showed reduced tumor volume but she became progressively hypercortisolaemic. MDT discussion felt redo transphenoidal surgery no longer appropriate but unfortunately, the patient declined radiotherapy.
Over the next 5 years, her metabolic control deteriorated, managed with intensive insulin regime, GLP-1 agonist and SGLT2 inhibitor, anti-hypertensives, statin, Levothyroxine for central hypothyroidism, prophylactic Rivaroxaban for thromboembolic risk and intermittent Metyrapone.
Despite this she developed worsening alopecia, arthralgia, myopathy and NAFLD and became wheelchair dependent.
Options of pituitary radiotherapy, bilateral surgical adrenalectomy or ablation were discussed. Bilateral surgical adrenalectomy was accepted by the patient but delayed due to Covid-19 pandemic. Whilst awaiting adrenalectomy she developed worsening headaches and superior quadrantanopia. Repeat MRI showed increase size of pituitary adenoma with supraseller extension. She commenced Pasireotide after MDT discussion but attended A/E with worsening headache, visual field defect and ongoing cushingoid symptoms after 3 doses. Repeat MRI scan showed no significant tumour growth or apoplexy and MDT recommended Osilodrostat, which the patient is awaiting.
Conclusion: This challenging case highlights the alternative options of managing resistant hypercortisolaemia in an individualized approach and the difficulty explaining complex treatment options with patients.
For Dunedin woman Nikki Cockburn, being one in a million is not a compliment.
She is one of the very few New Zealanders with Cushing’s syndrome, a very rare disease caused by excess production of cortisol.
Long afflicted by skin disease psoriasis, she had been prescribed the steroidal cream Dermol.
Over the years that she rubbed the cream on her skin she unknowingly boosted the cortisone levels in her body to the point where the symptoms of Cushing’s syndrome began to manifest.
“I was very unwell for a lot of last year. I was getting headaches a lot, my hair was falling out a lot … I had constant diarrhoea and because I have friends in their 30s who had bowel cancer I thought it might be that, but it went away again.
“I had insomnia, overheating, constant sweating, impaired cognitive function, and I was getting big, thick purple stretch marks over about 70 per cent of my body.”
Eventually a friend, who fortunately had heard of Cushing’s syndrome, raised that as a possibility.
“I went and looked it up and went ‘I’ve got that, I’ve got that, I’ve got that’ – it was like ticking everything off of a list.”
An official diagnosis soon followed, but during that consultation came the shocking discovery that all Cockburn’s agony could have been avoided.
She was told that in 2014 her doctor had received a letter from a dermatologist warning Cockburn should stop using Dermol immediately.
“I got offered the chance to meet him [her doctor] just after I was diagnosed but I knew I was so angry and upset that there wouldn’t be a positive outcome, and I’m a forgiving person,” Cockburn said.
“I ended up meeting him last month, took a support person and read out a letter setting out everything I have been experiencing … He apologised profusely and cried quite a lot in his talk with me. I could tell he was really remorseful.
“He was also honest. He told me that the alert wasn’t put on my file in 2014 – it was in fact put on there in 2012, which upset me even more.
“He had seen the sentence there, but somehow had missed it,” she said.
The clinic and doctor, which Cockburn did not wish to name, have since reviewed their processes and procedures for dealing with patient alerts and held refresher sessions on psoriasis treatment.
Cockburn now uses Dermol sparingly and is trying to replace it with a non-steroidal cream for her psoriasis.
Cushing’s syndrome, which affects between one and three people in every million, is an invisible illness. With make-up, a long dress and stockings on there are no obvious signs of anything being wrong with the outgoing 36-year-old.
“A lot of what is going on with me is going on inside, or are things you couldn’t see unless I was wearing shorts and a T-shirt,” Cockburn said.
“I’m normally in bed or lying on the couch, because one of the big side effects for me has been lower back pain and I now have gynaecological problems as well.
“Over the past few months my back pain has been horrific – I am in pain sitting here now – but I guess if you talk to anyone who is in daily pain they kind of get used to it.
“I’ve forgotten what it is like to feel well.”
Cockburn decided not to pursue a health and disability commissioner complaint, but the Accident Compensation Corporation is investigating her situation.
With treatment, Cushing’s syndrome can be managed, but Cockburn’s prognosis is uncertain, which has led to anxiety and panic attacks.
“I have been very open on Facebook – I blog about my journey, what is happening to me,” Cockburn said.
“What has happened to me has happened – you can’t change it, you can’t take it back – but I sure as hell can stop it happening to other people by raising awareness.”
It took Yana Zavros 16 years to get diagnosed with a disorder called Cushing’s disease.
Sixteen years of a demoralizing condition that causes muscle weakness, mood changes, and weight gain, among other symptoms, because the patient’s adrenal glands produce too much of the stress hormone cortisol.
By the time Zavros received her diagnosis, she was an accomplished researcher at the University of Arizona who focused on gastric and pancreatic cancer. Cushing’s is rare in humans, and Zavros was frustrated by how long it took to diagnose and that the only treatments available to her weren’t even specific to her disease.
Then, she remembered that she was qualified to start a research program and do something about it.
“It was a turning point in how I viewed research and what we do as scientists,” she says. “I found my purpose.”
Zavros believes the solution for better diagnosis and treatment for Cushing’s disease in humans is first understanding how to cure the disease in dogs through an approach to research called One Health. This concept looks for health solutions beyond the human by also considering animal and environmental health. In the last five years, UGA has invested in the One Health approach as part of a broader effort to bring interdisciplinary research teams together to tackle complex 21st century challenges.
While Cushing’s in humans is rare, that’s not true for canines. About 100,000 dogs are diagnosed with the hormonal disorder each year. Like their human counterparts, dogs with the disease suffer from weakness and weight gain. They also lose their fur, gain pot bellies, and can have a shorter life span.
The fact that both humans and man’s best friend share the disease (which, to be clear, is not contagious) might be the key to finding better treatments or perhaps even a cure for Cushing’s for both species.
“One Health is all about the intersections between humans, other animals, and our environment,” says Jon Mochel, director of UGA’s Precision One Health Initiative. “What can we learn about similarities in diseases, such as cancer or cardiarenal and metabolic diseases, that are shared by humans and other animals? What conditions lead to disease transmission between animals and humans? What role does the environment play in all of this? And how can we create better conditions to optimize human, veterinary, and environmental health?”
One Health has been practiced at UGA for over a decade, but the concept accelerated with the launch of UGA’s Precision One Health Initiative, supported by a hiring initiative in 2021. With UGA’s new School of Medicine, UGA is one of 13 universities in the nation with schools of veterinary medicine, human medicine, and agriculture on one campus. Add these to UGA’s other strengths, which range from pharmacy and engineering to public policy, law, and business, and UGA is positioned to make a unique impact.
“By working together, we can accelerate the discoveries of cures and then speed up the translation of discoveries to bedside practice,” said Jack S. Hu, senior vice president for academic affairs and provost at UGA’s One Health Symposium in November.
This interdisciplinary approach is being targeted at Cushing’s disease. UGA researchers are trying to understand, on a molecular level, the tumors that often cause the condition. And since the disease is much more common in dogs, researchers are collecting tumor biopsies from canine patients at UGA’s Veterinary Teaching Hospital.
“From those biopsies,” explains Mochel, who is also a co-investigator on the Cushing’s project, “we’ve created mini-tumors in dishes to screen for thousands of molecules in the cells. This process will allow us to determine which drugs could be safe and effective in fighting the disease.”
Researchers hope to customize optimal treatments for individual canine patients. If the trial treating dogs for Cushing’s is successful, then the next step is studying treatments in humans.
The research project could help with other applications as well. For example, Karin Allenspach, a clinician scientist and professor of pathology in the College of Veterinary Medicine, is a co-investigator on the Cushing’s research, helping create the mini-tumors called organoids, which serve as three-dimensional models of diseased tissues. These organoids can also be used in cancer research to help try out more drugs more quickly and pinpoint which ones should be tested in clinical trials. If this approach works, it means better treatments delivered to patients faster and cheaper.
UGA’s Precision One Health Initiative is just getting underway, but there’s already momentum toward making an impact.
“We have the resources, the talent, and the expertise to move this field forward,” Mochel says. “Our next step is to effectively translate these efforts from the lab to the patient’s bedside.”
Cushing’s syndrome is a rare disease which affects 65 patients in one million inhabitants of the EU. Cushing’s syndrome is a state where the body is chronically exposed to a high concentration of cortisol.
The signs of the disease are often overlooked. It took 14 years to diagnose Ida with the disease and to start treating it successfully.
On Cushing’s Awareness Day, Ida emphasizes the importance of communication between the patient and the doctor.
Sharmyn McGraw knows as much about pituitary disease as some doctors.
She learned about it after struggling for years with a medical mystery that began in 1993. First, she began to feel anxious. Then, she began to gain weight, and she developed a rash. Much of her hair fell out. Her eyes began to yellow and her face puffed up. Different doctors gave her different explanations. They told her she was allergic to caffeine. That she was just retaining water. That she was beginning menopause.
In the end, none of those things turned out to be true. She finally figured out that she had Cushing’s Disease, which is caused by excess production of the hormone cortisol, which, in her case, was caused by a tumor on her pituitary gland.
Listen to this episode to find out how Sharmyn got to the bottom of her medical mystery with the help of Dr. Dan Kelly, and how she uses years of knowledge to help others suffering from pituitary diseases through the support group she founded at the Pacific Neuroscience Institute.
From 2019:
Sharmyn, can you briefly walk us through your story – how you started and how you got to where you are today. My story is about the best kept secret in medicine…
I went from a petite dress size 2 to an obese size 22 in just one year. I went from athletically fit to barely able to walk upstairs. One of my closest girlfriends was a former Miss Universe and actor in Hollywood; we looked like sisters. We often hung out socially with those in the entertainment biz where anorexia is a compliment—not a disease.
But in 1993, at the age of thirty-one, I started to gain weight and lots of it. I ate a very healthy diet; I worked out five to seven days a week and trained with a fitness trainer just as I had always done, but the weight piled on. While my friends were busy planning their weddings and starting their families, I began my journey of the next seven years, seeking help from doctors all over California for a correct diagnosis and treatment. My beautiful thick, long blonde hair fell out by the handfuls. I got up to nearly 250 pounds, but the odd weight gain was mostly in my round moon face, and my stomach stuck out over fifty-four inches. Soon, many other symptoms started: I had constant anxiety, and I felt like I wanted to come out of my skin from the constant nervous energy racing through my body.
Nighttime was the worst; while I should have been sleeping, I paced my apartment to help slow down my racing heart. I felt nauseous from anxiety 24/7. I slept fifteen to twenty minutes at a time, but once I’d fall asleep, I would jolt awake with a shot of more nervousness pumping throughout my body. Sometimes I’d go days with only a few hours’ sleep.
Soon my blood pressure had to be controlled by medication; I also needed medication for anxiety and depression just to function. As a single woman, I needed to be able to keep my job; I needed to keep my medical insurance so I could keep seeking help from doctors. Although there were so many times when I wanted to give up, I had to keep going.
All the medical professionals said there was nothing medically wrong with me; just eat well and exercise more was their sage medical advice. I knew they were missing something as none of this was in my nature. A person doesn’t go from being thin, happy, and full of life to gaining over 100 pounds and enduring chronic anxiety and depression for no reason.
I continued for seven long years seeking help from general doctors to endocrinologists to gastroenterology specialists, rheumatologists, hematology experts, and even psychologists. All were highly respected and highly educated; unfortunately, none were willing to think outside their narrow perspective; none of these medical professionals wanted to listen to me, who in their words “let herself go.”
They would not believe me when I told them I was truly eating well and exercising properly but instead, offered more and more prescription drugs. When I said I didn’t want to take the drugs, and I wanted to find out what was causing me to be so sick, they wrote me off as unwilling to help myself. I was madly frustrated and felt betrayed by the medical community as well as society.
Many friends and even some family members felt I was causing myself to be sick. I’m not a shy personality, and I had no problem speaking up. Loudly, I begged for proper diagnosis; I begged for proper treatment. I told everyone, loud and clear, there was something medically killing me, and I wanted my life back, but they continued to blame me for my laundry list of poor health issues.
Eventually, I was so sick, I accepted that this undiagnosed illness was going to kill me eventually, but I was determined NOT to die before I found out what disease had turned my health upside down! I wanted to make sure other people did not have to suffer from this horribly embarrassing, lonely, debilitating disease. So, I started my journey to save myself, and whoever else was suffering like me.
Unlike today, back then, I couldn’t simply Google my symptoms, so I had to research by going through all my medical records. I remained persistent until I got copies of everything I needed. Through the years many doctors suggested I had hormonal issues, but they attributed any hormonal abnormalities to the fact I was obese and suggested if I lost weight, all my health problems would be gone. They were like an annoying, broken record.
But I didn’t go to medical school, so I had to rely on my intuition and the fact that I knew my body better than anyone else. I had a hunch the hormone issues were causing ALL my health issues. Fortunately, while going over thousands of pages of lab results and doctor’s notes, among innumerable discrepancies of the medical opinions and endless mismanagement of my healthcare, I also found a few clues of where to start.
I borrowed a friend’s computer and typed in Cortisol. According to my health records, this hormone had only been tested once in seven years, and it registered as Very High—Above Normal level. The doctors said it was high because I was overweight, but I wanted to see for myself. And up on the computer screen popped an article published by the Pituitary Network Association,www.pituitary.org.
The article’s headline read: “Cushing’s Disease.” In one of my previous medical reports, a doctor wrote he ruled out Cushing’s syndrome. This article proved him uneducated about proper testing for Cushing’s, and he was very wrong.
Cushing’s disease is a secondary disease caused by a pituitary brain tumor. The pituitary is a small, bean-shaped gland, less than one centimeter in size, and referred to as the master gland. It sits at the base of our brain between our optic nerves and carotid arteries. This small but powerful gland controls our quality of life by producing major hormones.
A Cushing’s tumor produces high levels of adrenocorticotropic hormone, (ACTH), which in turn signals the pituitary gland to stop producing the normal production of ACTH. One of the key functions of the pituitary gland is to keep us alive by signaling the adrenal glands when to produce and when not to produce Cortisol, our one life-sustaining hormone. However, the ACTH producing tumor never shuts off the production of ACTH, causing the pituitary to stop its normal feedback system with the adrenal glands.
Therefore, the adrenal glands never stop overproducing our fight or flight hormone, cortisol. For years the medical community and others told me that my health issues were all in my head. Well, in fairness, they were right. Luckily for me, I knew I was not causing this madness. Although it still sounds strange to say, I was so happy to find out that I had a serious and life-threatening pituitary tumor because, for the first time, I knew where to start my fight.
Once I suspected I had Cushing’s disease, I had to find the experts to confirm the often-complicated diagnosis. And that’s when the universe guided me through more research to meet the team that helped save my life! Dr. Pejman Cohan, my neuro-endocrinologist, and Dr. Daniel Kelly, my neurosurgeon, the director of the Pacific Neuroscience Institute in Santa Monica, CA. My angels were in my own backyard!
Dr. Cohan soon confirmed my diagnosis of Cushing’s disease, and it was Dr. Kelly’s difficult task to remove the tiny tumor that wreaked so much havoc. On April 14, 2000, Dr. Kelly successfully removed the tumor, and the next chapter of my journey began: helping others who suffer from this horribly underdiagnosed, misunderstood, life-threatening disease.
For the past nineteen years, I have been honored as a pituitary patient advocate spokesperson both nationally and internationally. Pituitary Tumors are the Best Kept Secret in Medicine. I’ve remained dedicated along with a team of pituitary neuro-endocrine experts to raise public awareness and help educate, and in some cases, reeducate the medical community on recognizing the symptoms of a pituitary tumor and/or hormonal issues related to the neuroendocrine system.
Pituitary disease is uncommon but not rare; however, there are commonly four types of pituitary tumors: prolactin-producing tumors, acromegaly, caused by too much growth hormone, Cushing’s disease, too much ACTH causes a secondary disease of too much cortisol hormone, and non-functioning tumors, which have their own set of problems.
We’re always bombarded by how great it is to pursue your passion, etc. – but we’ve spoken with enough people to know that it’s not always easy. Overall, would you say things have been easy for you? I can say in all honesty the darkest part of my life, struggling for a correct diagnosis, has turned into the brightest part of my life. The pituitary tumor experts I work closely with: Dr. Daniel Kelly, Dr. Garni Barkhoudarian, Dr. Pejman Cohan, and a handful of others are truly amazing.
These teams of experts respect and value my patient advocate perspective, and they have restored my faith in our medical community. I’m honored to have traveled this difficult journey with these brilliant, caring, and compassionate doctors along with many others who are dedicated patient advocates.
But truly, what makes this journey rewarding and worth the endless hours we’ve all put into the proper treatment and awareness of pituitary disease is the patients. Seeing how far we have come to help raise public awareness and education in our medical communities makes me extremely proud I could be an important part of it.
Speaking with the patients, seeing them get their lives back, helping them to make good, educated decisions about their treatment is really what keeps us all going. And the icing on my cake has been meeting two of my closest friends, Krystina, who had a prolactin tumor, and Shady, who had acromegaly—both had pituitary surgery with Dr. Kelly, and they are leading healthy and productive lives. I love them like my sisters.
So, as you know, we’re impressed with Hormones411 – tell our readers more, for example, what you’re most proud of as a company and what sets you apart from others. When I was growing up, I struggled all through school; learning wasn’t easy for me. One of my high school teachers had me stand up in the middle of her class in front of my peers while she berated and humiliated me over my poor grammar and spelling. I walked out of her class and never went back.
After that, I was petrified to write so much as a greeting card that someone would read. After barely graduating from high school, I was unable to pass the entrance exam for English 101 at our local college. I tested at a fourth-grade level. Earlier that year, I was diagnosed as severely dyslexic.
My high school in Southern California was overcrowded with 2100 students in my graduating class. My home life was chaotic, and there was no one there to help me either. I felt that my dream of becoming a writer was impossible. This was long before computers, so I stuffed my dreams of writing lighthearted mysteries way down inside.
But instead, I excelled at drawing, painting, graphic design, cartooning and photography; anything I could draw, design, capture or paint, I did extremely well. And I still love anything to do with creating art. After my surgery for the pituitary tumor, my passion to help others was bigger than my fear of writing. I knew I would have to write articles and correspond with medical professionals if I wanted to get their help and/or attention.
I created my first flyer, “They Were Right; It Was All in My Head—Pituitary Tumors. The Best Kept Secret in Medicine.” I was scared to death to let anyone see it, but I created a good design layout because of my graphic arts studies, and I finally worked up enough nerve to ask Dr. Kelly to look it over and edit it for mistakes. Dr. Kelly loved it, so after he made a few minor corrections, I was off and running!
The flyer traveled without the help of emails or social media, but rather it was distributed all over the country by people who read it and passed the flyer to someone they thought might have the same disease. This one little flyer helped save so many lives, and it started my patient advocate ball rolling. I took a couple of writing classes because I wanted to learn to be a better writer; one of the classes was to learn how to write for magazines.
I sent out thirteen query letters and got twelve rejections. But when the health editor from Woman’s Day magazine called me and asked if they could buy my story, I said, “I’m a writer; may I write it? And she said, yes! From there I continued writing and publishing my story and raising awareness about Pituitary disease. I’m not sure what was more rewarding, overcoming the challenges that had held me back with dyslexia or raising awareness about Cushing’s to over ten million readers; they both felt amazing.
Nineteen years after my pituitary surgery, it’s finally time for me to write my fun mysteries! I’m working on a three-book mystery series. I’ve finished the first draft, and I’m working on my revisiona. I hope to have, Dying to Date: Looking for Mr. Right but Finding Mr. Wrong, out in 2019; book two: Dying to Marry and book three: Dying to Divorce out after that. My Dying series website and Facebook page are coming soon. Praise to Lillian Nader, my amazing editor for her patience.
My goal is to get involved with speaking for schools to encourage kids not to let people discourage them from their dreams. It will always take hard work, but with dedication and a lot of effort, you can do what you love.
So, what’s next? Any big plans? I have seen a lot of wonderful progress in the work Dr. Kelly and his colleagues are doing at the Pacific Neuroscience Institute to advance treatments and improve the quality of life for their patients with cancerous brain tumors, pituitary tumors and so many other areas of the neurosciences. They are truly a comprehensive Center of Excellence.
I plan to continue helping them and their patients, and I am also excited to write my mystery stories. I will continue to use my public platform to help raise awareness for pituitary disease. I hope to have the opportunity one day to inspiring children the importance of reading great books and telling their stories.
I’d never heard of Cushing’s disease, until it was revealed as the culprit behind my mysterious illness
By Sharmyn McGraw
Photographed by Brett Panelli
For years I was a size two. I worked hard to maintain my weight by exercising and eating a healthy diet—I even had a personal trainer. But in 1993, at the age of 31, my body rapidly changed. In four days I gained 11 pounds, and by six months it was 85. I tried eating less and working out more, but my weight just kept going up.
One year and 100 extra pounds later, my appearance was drastically changed. With most of the weight centered around my stomach, I looked as if I were pregnant with twins. My face and chin were round and the back of my neck had a buffalo hump. On top of it all, my thick blond hair began falling out in handfuls.
The anxiety and depression were nearly unbearable. I was a 31-year-old woman with a 227-pound body living in Newport Beach, California, a town south of Los Angeles where there’s no such thing as being too thin. Obesity just does not exist, especially among my peers. As an interior designer, I was often invited to social events, but I was so embarrassed by my appearance that I started avoiding them.
What was going on inside my body was just as troubling. I felt as if I’d had a triple espresso on an empty stomach. I was flying at top speed with constant jitters and chronic indigestion, rarely sleeping more than two hours a night. Mentally and physically, I was exhausted.
Searching for an Answer
While my girlfriends were busy planning their weddings and starting their families, I went from doctor to doctor hoping that someone would figure out what was wrong with me. In seven years, I sought help from more than 15 highly recommended physicians, as well as nutritionists, psychotherapists, an acupuncturist and a naturopath. Pleading my case as if I was on trial for a crime I did not commit, my closing argument was always the same: “I eat a healthy diet and exercise fanatically. This rapid weight gain, anxiety and depression is completely out of my nature.”
Nearly ever doctor I saw, convinced that I was a compulsive overeater with a mood disorder, simply offered advice on dieting and exercise. “Maybe you just think you work out as often as Jane Fonda,” was one physician’s comment.
One doctor labeled me a hypochondriac, and another said I had too much yeast in my system. Over the course of seven years, I also heard that I had fibromyalgia, a spastic colon, acid reflux and a sleep disorder, was prediabetic and premenopausal. I endured painful and expensive medical tests, including two endoscopies, a colonoscopy, a bone marrow biopsy and multiple CAT scans and ultrasounds. I had my thyroid removed and ankle and knee surgery (due to the excess weight on my joints).
During this time, with my family living far away in Illinois, I relied on my friends for support. Many of them were helpful, but some just continued to drop subtle hints about the latest diets they had read about. As for having a relationship—anxiety, chronic muscle pain and uncontrollable diarrhea were just a few of the reasons I stopped dating completely.
As days turned into years, I knew my symptoms were getting worse. My mind was no longer sharp and quick, and I stuttered to complete even simple sentences. I was not sure how much more I could endure, but I was determined that my obituary would not read, “Obese woman dies of unknown causes.”
I gathered all of my medical records and went to work studying every line. I found there was just one thing almost every doctor agreed on: My cortisol level was too high. In fact, it was three times the normal level for this hormone, yet none of the doctors felt that it had anything to do with my laundry list of complaints. By this point, I was fairly certain that it did.
Borrowing a friend’s computer, I went on the Internet and typed in the word “cortisol.” Up popped an article on Cushing’s syndrome, a hormonal disorder caused by excessively high blood levels of cortisol, and there on the screen were every one of my symptoms. I couldn’t believe it! Had I possibly diagnosed myself seven long years after my symptoms began?
Suddenly I remembered that I had seen the word “Cushing’s” in a report from a clinic I’d been to four years earlier. Ironically, the doctors had ruled it out because my eyes weren’t yellow and I didn’t have mouth sores. Now my next step was to convince a doctor that I had this disease.
Finally, a Diagnosis!
I’ll never forget the day I was ushered into the office of endocrinologist Andre Van Herle, M.D., at UCLA Medical Center. I was prepared to once again plead my case. But without knowing anything about me, he simply shook my hand and said, “So you are here because you have Cushing’s.”
This was a doctor with more than 40 years of experience in diagnosing people with the syndrome, and he knew at first glance that I had the physical appearance of someone with the disorder. It was one of the happiest days of my life. I was overwhelmed with emotion, and tears streamed down my face. Most importantly, I realized I was not crazy and someone was willing to help me.
Dr. Van Herle and his colleague, Pejman Cohan, M.D., soon confirmed through blood tests that I did have Cushing’s syndrome. In my case, as in about 70 percent of cases, the problem was a tumor in my pituitary gland that was causing the overproduction of the hormone adrenocorticotropin (ACTH). This hormone stimulates the body’s adrenal glands to produce cortisol, the life-sustaining “fight or flight” hormone, which has many important functions. High amounts of cortisol, however, can wreak havoc, causing rapid weight gain, upper-body obesity, a rounded face, increased fat around the neck, anxiety and depression. Over time, abnormally high levels can even be life-threatening.
The next step was surgery to remove the tumor in my pituitary, located at the base of the brain, but there was one more obstacle. Although my hormone levels indicated I had a tumor, it was apparently so small that it wasn’t picked up on an MRI. So there was a chance that my surgeon, Daniel Kelly, M.D., director of UCLA’s Pituitary Tumor and Neuroendocrine Program, wouldn’t be able to locate it. Thankfully, he didn’t encounter that problem. On April 14, 2000, Dr. Kelly was successful in removing the tiny tumor though an incision in the back of my nasal cavity.
Today, four years later, I am 100 percent cured, and my body and mind are finally free from the horrible effects of Cushing’s. I’ve been able to lose 40 of the 100 pounds that I gained and am confident I can lose the rest. As a volunteer, I help facilitate a UCLA pituitary tumor support group, and I recently spoke to medical students at UCLA School of Medicine, explaining my difficulties obtaining a correct diagnosis. Looking back over nearly 10 years, it’s painful to think about all that I’ve been through. But I am so proud of myself for never giving up. I hope my story will help encourage and empower other women to do the same.
Pituitary Cushing’s: Sharmyn (sharm on the boards) was featured on the Montel Show.
In 1993 at the age of 31, Sharmyn went from a socially acceptable dress size two and full of life to an obese size 22 and barely able to function in just one year. Despite the years of dedication to maintain a shapely muscular body, she suddenly had no control over the rapid weight gain. Her hours of personal fitness training and a healthy diet did nothing to stop the pounds from piling on. Sharmyn gained as much as eleven pounds in four days, 85 pounds in six months and 100 pounds in a year. Soon the weight gain was the least of her health problems; her hair fell out by the handfuls, her stomach stuck out like she was pregnant with twins, emotionally she felt like a misfit, and much more.
For seven horrific years Sharmyn searched the medical community for help, but over and over doctors told her there was nothing medically wrong with her…nothing some good old dieting and exercise couldn’t fix.
In spite of the many years of challenges within our healthcare system, Sharmyn ultimately diagnosed herself via the Internet and was fortunate to find a team of experts at UCLA Medical Center who confirmed her diagnosis. On April 14, 2000. Dr. Daniel Kelly, a world-renowned pituitary neurosurgeon—her angel – successfully removed the tumor and literally gave Sharmyn her life back.
Pituitary Cushing’s – interview with Sharmyn (sharm on the boards)
Cushing’s disease-Pituitary Gland
Sharmyn McGraw searched for answers for seven years for whatever it was that was killing her; finally she diagnosed herself via the Internet with Cushing’s disease, caused by a pituitary brain tumor.
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