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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.
Deloreese Daniels Owens, daughter of “Touched by an Angel” star Della Reese, was found dead at her Los Angeles-area home Wednesday. She was 41. The cause of death was not disclosed, but Owens suffered from a pituitary dysfunction that made her prone to infections.
From 2002:
“Touched By a Pituitary Tragedy”
Actress Della Reese has spent the last eight years starring on the hit TV series “Touched by an Angel.” But earlier this year Reese, 71, was touched by tragedy. In March, her 42-year-old daughter, Deloreese Daniels Owens, died from complications stemming from pituitary disease. Owens left behind two children, ages 19 and 21.
Understandably, Reese has been too distraught to discuss her death, but in an interview with the Pituitary Network Association member and author Ken Baker, Reese talked about the painful experience, sharing her frustration with the lack of awareness and knowledge of pituitary disorders. “When it happened, I thought, ‘It’s such an odd thing to die from,’ because pituitary problems aren’t something you hear about,” Reese said. “It makes it harder because you don’t understand what happened. It seemed so strange and hard to explain. It still is, to be honest.”
Reese said that her daughter’s pituitary gland — the body’s “master gland” — had begun malfunctioning about six years ago. Her Los Angeles-area endocrinologist prescribed various medications, but, still, the gland’s functioning was severely impaired. She continued with hormone injections and other drugs. “She had been treating it for some time,” Reese said. “It seemed fine and the medication seemed to be enough.”
But Reese said her daughter’s death came suddenly this spring soon after her daughter caught a cold. “Her gland stopped — period,” she said. “As you know, when the gland stopped, her immune system stopped too.” Reese believes strongly that the public must have more information about pituitary disorders. She praised Ken Baker for his 2001 book, “Man Made: A Memoir of My Body,” in which he told the story of his battle with a prolactin-secreting pituitary tumor. Reese also applauded the educational outreach efforts of the Pituitary Network Association, which has helped thousands of patients and their loved ones cope with pituitary disease. “People need to know more about the pituitary,” she said. “It is so important.”
Despite the tragedy, Reese, an accomplished gospel singer who has moonlighted as an ordained minister since the late 1980s, has found spiritual peace with the loss of her daughter. “She was in a very good place in her life,” Reese said. “She was happy. She had established a relationship with God. It wasn’t a good time for me, but she was at a good place when she left.”
A CORONER has recorded a verdict of accidental death at the inquest held into the death of a 40-year-old Wrexham mother.
Marie Richardson, of Bryn Hafod, died in March at the Maelor Hospital.
A post mortem examination found that she had died as a result of a haemorrhage involving the pituitary gland, which plays a key role in the body’s hormonal system.
The inquest was told a post mortem examination had been conducted by Dr Anthony Burdge.
Giving evidence, Dr Burdge said that it was probable the bleeding had been caused as a result of thinning of the blood and not a trauma such as a fall.
Contributory factors in Mrs Richardson’s death had been Cushing’s disease, a very rare condition involving a hormone disorder, and bronchial pneumonia.
The court was told by Mrs Richardson’s husband, Andrew, that his wife had started to experience ill health, including swollen legs and constant backache.
Her mobility was badly affected. Mrs Richardson was admitted to the Maelor Hospital.
Consultant physician Dr Stephen Stanaway said that as part of the treatment, Mrs Richardson received a small dose of a blood-thinning drug to help ensure she did not fall victim to clots.
She had been given a scan involving the pituitary and there was no evidence of a tumor.
It transpired the post-mortem had found Mrs Richardson did have a tumor, which had experienced bleeding.
Dr Stanaway said that Mrs Richardson had not liked the scanning process and moved at one point – it was important for patients to remain still.
Acting coroner John Gittins asked if Mrs Richardson would have been administered with blood thinner if the tumour had been known about at the time of treatment.
Dr Stanaway said it would have to be a balanced decision but he felt that she would have been.
Legal representatives for Mrs Richardson’s family and the NHS Trust were present at the inquest. Dr Stanaway was asked a series of questions about whether anything further could have been done about Mrs Richardson’s treatment while at the Maelor.
He said that with hindsight the only potential other avenue may have been if she had been given steroids.
But Dr Stanaway stressed he doubted this would have been successful, emphasizing Mrs Richardson was a very poorly woman and it would be impossible to say that administering steroids would have saved her.
Recording his verdict of accidental death Mr Gittins emphasized: “This is not an indication of responsibility, blame or judgment.
“That is not my jurisdiction.
A CORONER has recorded a verdict of accidental death at the inquest held into the death of a 40-year-old Wrexham mother.
Marie Richardson, of Bryn Hafod, died in March at the Maelor Hospital.
A post mortem examination found that she had died as a result of a haemorrhage involving the pituitary gland, which plays a key role in the body’s hormonal system.
The inquest was told a post mortem examination had been conducted by Dr Anthony Burdge.
Giving evidence, Dr Burdge said that it was probable the bleeding had been caused as a result of thinning of the blood and not a trauma such as a fall.
Contributory factors in Mrs Richardson’s death had been Cushing’s disease, a very rare condition involving a hormone disorder, and bronchial pneumonia.
The court was told by Mrs Richardson’s husband, Andrew, that his wife had started to experience ill health, including swollen legs and constant backache.
Her mobility was badly affected. Mrs Richardson was admitted to the Maelor Hospital.
Consultant physician Dr Stephen Stanaway said that as part of the treatment, Mrs Richardson received a small dose of a blood-thinning drug to help ensure she did not fall victim to clots.
She had been given a scan involving the pituitary and there was no evidence of a tumor.
It transpired the post-mortem had found Mrs Richardson did have a tumor, which had experienced bleeding.
Dr Stanaway said that Mrs Richardson had not liked the scanning process and moved at one point – it was important for patients to remain still.
Acting coroner John Gittins asked if Mrs Richardson would have been administered with blood thinner if the tumour had been known about at the time of treatment.
Dr Stanaway said it would have to be a balanced decision but he felt that she would have been.
Legal representatives for Mrs Richardson’s family and the NHS Trust were present at the inquest. Dr Stanaway was asked a series of questions about whether anything further could have been done about Mrs Richardson’s treatment while at the Maelor.
He said that with hindsight the only potential other avenue may have been if she had been given steroids.
But Dr Stanaway stressed he doubted this would have been successful, emphasizing Mrs Richardson was a very poorly woman and it would be impossible to say that administering steroids would have saved her.
Recording his verdict of accidental death Mr Gittins emphasized: “This is not an indication of responsibility, blame or judgment.
“That is not my jurisdiction.
48 years old. Male. Had prolactinoma pituitary tumor in 2000, it enfarked. 7x8mm. On testosterone replacement since as it destroyed my bodiea ability to produce testosorone.
Started what appeared to be a battle with Cushing’s symptoms fforin 2012. Shown all symptoms of episodic Cushings. Finally ain 2018 a new 4mm mass appeared on my pituitary midline and is growing.
However I have only been able to get just one positive saliva night time cortesol test so no one will look at Cushing’s. I am taking 1.5 mg of Klonkpan daily and think it may suppress the cortesone and squew the labs especially the suppression test. At this point I can feel the cortisol Jump in the evening. The only thing that stops the terrible sick feeling is my scheduled dose of Klonipan.
I started a seveir crash in March or 2020. Hematacrits started rising uncontrolably and made it to 62 percent by August of 2020. Blood pressure is not controllable when episodic. By August made it to 190 over 120. Had a cardiac Event in September 2020 from all the symptoms. And had Gained 26lbs in 4 months. Fatigue and foggy thinking so bad I can hardly function when episodic. Episodic now most of the time. Can hardly work and body is done by 3 PM every day.
Each time I have a dextramazone suppression test I get a 3 to 4 day respit like the ACTH is reset and I feel normal and symptom free. My blood pressure returns to 130/80 and my life seams to be ready to go back together. This all from 1 MG of Dextramathasone one evening then I get 3 or 4 days if life back. One half a pill. No one can tell me if the Klonipan will produce false negatives and have not asked me to adjust.
My sleep cycle is from 11 PM to wake at 4 AM sick as a dog most days. The Serum cortisol levels they will not take until 8.00 A M. I am always feeling better by 8 A M. They will not adjust the time they take the suppressed serum sample and my result is always .8. They say if not over 5.0 they won’t consider surgery or treatment I’d any kind. My ejection fraction rate from my heart is now at 30%.(should be at 75% for a regular person my age) two more points down and I qualify for a heart transplant.
This is crazy. No one can figure out what is causing any of this but every symptom points to cushing’s. ESPECIALLY the symptoms all becoming acute when the Tumor appeared on the MRI. I have been tested for virtually every illness known to man. My endocrinologist still believes it could be episodal Cushing’s and is supporting the tests. But no treatment. I am dying. I will surely be dead within one more year as they won’t provide a heart transplant unless they know the cause of the reduced ejection rate. So they throw drugs as me over and over and all the beta blockers and channel blockers almost kill me because I go off episode and my BP drops to 90/40.
But Without 3 positive Cortisol tests they won’t consider Cushing’s as even a possibility. Have been to every specialist you can see. Had every part of my body scanned. I am dying. My boys have not had their father in years now. My business has been hobbled as I am the CEO. Hiding my illness from competitors and over zealous vendors is harder than anything. Now I am finally losing all my best people because the promises I will be back to my old selve again no longer seam real when I am just fighting to stay alive.
One doctor claims it’s all sleep apnea. The sleep studies show MILD sleep apnea. And they only showed that after the most current wild events and weight gain. Help. Please help. People need me. I am not afraid to die. But people need me. I serve so many roles and what I do helps thousands of people . I can’t be done providing in this life. I want to be a real Dad again. I am a shell of a man and dying. All the doctors tell us “when you find out what is wrong with you comeback and tell us so we can shift our treatment.” They have all given up on me.
Please someone Help. . Klonipan question is the biggest one now. Money is no object. I will give up everything and anything to have these years with my family. Even just a month of being myself before I have to go. Mayo clinic won’t take me because I don’t have the positive Cortisol x3.
When I opened up my phone this morning, I saw the reminder that this is the anniversary of Sue’s passing. She was such a good friend to so many here and so many Cushies worldwide. It’s been another year. Not a day goes by that I don’t miss Sue.
When I see a catalog with flamingo items, I’m reminded of Sue.
We took the picture below during a trip to Barbados in 2004. At the Graeme Hall Nature Sanctuary.
We got matching hats. Since she died, I’ve never worn mine again but it is next to my front door, ready to go…
Sue loved Barbados. I’ve renamed the back patio “Sue’s Garden”. I often “check-in” there on FourSquare and I’m thinking that other folks in the area wonder who in the heck Sue is and why she has a garden in Barbados. LOL
At Sue’s last Cushie Weekend in Rockford, IL – 2006
We planned to go back to Barbados in August 2006 but Sue couldn’t hold on that long. 🙁
When she was sick for the last time, I got her her very own SuperSue bear with her name embroidered on the back of the cape. She loved it but it wasn’t enough…
I’m sure that many of the new folks here never got to meet her, but you would go well to go back and read some of her old posts. She was always so encouraging to all of us.
Sue was born in Michigan on August 08, 1946 and passed away on March 12, 2006 at the age of 59.
She was a very special friend to Cushies world-wide. We will remember her always.
There was an online memorial for Sue during the Cushing’s Awareness Day Medical Forum in Oklahoma, April 5-8, 2006. For more information, please visit this topic on the message boards
HEAD/NECK/SHOULDER/THROAT PAINS: hundreds of daily: “pops” in neck, terrible stabbing pains in base of skull, throat, shoulder, with hundreds of random screams of “ouchhh” daily for months. Tests or Treatments tried: chiropractors, ibuprofen, hot packs, x-ray on neck normal, physical therapy, MRI on neck normal
1-08
BODY JOLTS & INVOLUNTARY MOVEMENTS START: electric jolt sensations and myoclonic type jerks and involuntary movements – mostly when relaxed. Movements will stop if I get up and move around. These come with or without loud screams, gasps or other vocal noises. Tests or Treatments tried: EMG normal, MRI of head and normal, pain meds no help, oral steroid by Physiatrist no help,
1-08
SLEEPING PROBLEMS: wake up every night and sometimes stay awake for many hours – happened entire 2008, but 2009 was better.
2-08
MOUTH/JAW/TONGUE START: randomly the tongue tingles or twtiches, the jaw & cheek have pain (like someone is pulling off my face), the mouth/throat/tongue/and/or gums get ice cold, the mouth waters for hours. Tests or Treatments tried: more blood work normal, except a 7x higher than normal inflammation which neuros said had to be a lab error. Got steroid shot in head where the stabbing pain is. EEG recommended due to small seizure like movement when injecting the steroid.
4-08
MUSCLE TWITCHES START: randomly, different muscles twitch, hundreds of times daily (it is like body is making popcorn). Tests or Treatments tried: took a coupld stress free vacations. (I now its not stress related anyway but since the doctors cannot diagnois me, they don’t know what else to think. No help – same symptoms. Seen Neurologists with no answers. Got another steroid shot in head.
8-08
KNEE POPPING STARTS: just like neck from 10-07, one day it started to “pop” with pain hundreds of times daily. This made it hard to walk for months. Tests or Treatments tried: knee x-ray-normal and a special Lymes Blot test in California = negative.
11-08
Another Neurologist: Repeated inflammation test=normal.
12-08
Rheumatologist ran more blood test=normal
OTHER SYMPTOMS IN 2008-2009:
INVOLUNTARY MOVEMENTS / TWTICHED CONTINUE
ALL MOUTH SYMPTOMS CONTINUE
GASPING FOR AIR (take in a huge gasp of air, happens randomly, a several times daily)
LEG WEAKNESS / PAIN
INSIDE ELBOW AND MIDDLE FINGER, LOWER BACK AND BIG TOE PAIN
FATIGUE
HIGH PULSE 130+ doing nothing
HIGH BLOOD PRESSURE 145/97 average
HEART HURTS (just occasionally)
EAR ACHES/RINGS (CT of sinus area was normal)
NIGHT SWEATS (occasionally / only on head/neck area)
NECK HUMP
SKIN (acne, ichy, sweaty)
1-09
Tests or Treatments tried: Tried depression pills for 2 months with no help. I do not believe I have depression/anxiety issues though.
3-09
Tests or Treatments tried: Went on another fun trip to Disney World – had very strong symptoms most days
3-09
WEIGHT GAIN: (necklace didn’t even fit because my neck / stomach is getting fat).
Cortisol level checked and was high, so Endo specialist was recommended).
5-09
DIAGNOSED WITH CUSHING’S
4x6mm tumor on pituitary and high cortisol level. Scheduled for consult/surgery at Mayo in July.
7-09
UNDIAGNOISED and called Borderline Cushing because symptoms not are typical of Cushings.
They reviewed MRI – says its either a tumor or a rathke’s cleft cyst
CHEST XRAY – normal
EKG – normal
EMG – normal
ENT Dr. – normal exam – cannot explain mouth symptoms
COLONOSCOPY
MAMMOGRAM
DERMOTOLOGY – skin cancer diagnosed, shaved and treated
MRI on neck & spine- normal
EEG – normal
CERVICAL SPINE MRI – normal
MOVEMENT LAB: my movements don’t fall into the myroclonis catagory because I move faster than 100 milliseconds (?), even though they are a split second movement
SENSORY PROVOKED POTENTIAL NEUROLOGY LAB – normal
DEX SUPPRESSION & CRH & CORTISOL TEST, did not suppress, and had high and normal cortisol
OTHER URINE AND BLOOD TEST
PARANEOPLASTIC PANEL blood work – results show striated muscle antibodies which is either a neuro, myasthenia gravis, or a hidden tumor so get a lung scan recommended
9-09
LUNG/ADRENA CT SCAN: did not show lung tumor but showed enlarged or nodules on both adrenal glands
10-09
blood test & urine- (did 24 hr urinary metanephrines and fractionated catecholamines and blood aldosterone concentration and renin activity – all normal) (cortisol at highest end of normal)
11-09
new MRI – same as before
12-09
new CT of adrenals – no change. Await new results of striated muscle antibody test.
Dr recommends I wait 6 months to see what changes.
6-10
bi-lateral neuro angiogram confirms Pit. Cushings
Pituitary Surgery May 12, 2010
Back to work after 2 weeks. Its been 1 month since surgery and muscle pain and weekness is gone, heart pounding gone, high blood pressure down, but still have unusual symptoms such as involuntary movements and mouth symptoms. Still have enlarged adrenals.
I don’t know what to put here except I was am glad I finally getting tested since reading stuff on the net I see I have a lot of the side effects and it sorta clears things up some,
I started back in Jan 08 with a heart arrythmia that ultimately put me through weeks of cardio testing. All cardio came up negative, including passing the stress test at 110% for my age. I went back to my PCP and she was deadended with answers.
I started to advocate for myself asking if it could be endocrine since I had been diagnosed with Hashimoto’s Disease(a type of Hypothroidism) in 2002. In particular I asked her if she thought my adrenal system was the culprit. My doc said well let’s check cortisol levels. I did a salivary cortisol test that, according to the endocrinologist my doc spoke with said, was the highest he had seen.
They ordered up an MRI and confirmed a Pituitary Tumor on June 27th. My doc reacted quickly and had me go for an emergency eye exam that day to check visual fields…they were fine. Then my doc had me do urine and dexamethasone testing to see if cortisol levels could be duplicated.
Early July I had a phone call from my doc stating that since the other tests for cortisol came back normal they felt I had a non-functioning tumor but still wanted me to meet with a neurosurgeon. Finally on Aug 5th I met with the surgeon.
In the meantime I had been reading whatever I could get my hands on. I was prepared with many questions to the surgeon. Before I was in the room talking with him for 15 min. he mentioned Cyclic Cushing’s as a possibility. He had me repeat the salivary testing for 5 days…all came back normal. So the opinion remained that I may have Cyclic Cushings or can watch the tumor and symtoms or I could have the tumor removed for peace of mind.
I opted to have the surgery. to remove the tumor. Last Mon. Sept 29th I had Transsphenoidal surgery to remove the tumor. On Fri. Oct 3rd the neurosurgeon called with the pathology report results being that it was an ACTH(aka Cortisol) and Prolactin Tumor. He was vague to make a formal statement to agree that it was Cyclic Cushings.
So I am home on the mend 1 week post op…glad I made the decision to go forward with tumor removal. The medical system is curious though how they appeared almost afraid to make any formal opinions. Although the surgeon did state that Cyclic Cushings is difficult to diagnose. In my opinion, the evidence is in the pathology report!
Maybe it is my imagination, but I already feel like my “old self” back 10 yrs. ago. The other bit of history for me is that after my hypothroidism was diagnosed and I was stabilized on Synthroid and Cytomel I could never get weight off and in less than 6 months in 2005 I gained 40+lbs. No matter what I tried to do for weight loss I could not budge more than 5 lbs. I am now anxiouis to see how I do. I meet with the neurosurgeon in 5 weeks. He and possibly an endocrinologist will be following my health. Time will tell but I do feel I am on the right track.
Cushing's Disease is a rare condition caused by excessive production of cortisol, a hormone essential for various bodily functions. It is a specific form of Cushing's Syndrome, where the overproduction of cortisol is due to a tumor in the pituitary gland. The condition affects 10 to 15 people per million each year, predominantly women between […]
For all of my early life, I was the good, compliant, patient. I took whatever pills the doctor prescribed, did whatever tests h/she (most always a HE) wrote for. Believed that whatever he said was the absolute truth. He had been to med school. He knew what was wrong with me even though he didn't live […]
Transsphenoidal surgery is the primary treatment for patients with Cushing disease (CD). This study assessed the surgical and endocrinologic outcomes of patients with CD following endoscopic pituitary surgery using strict biochemical criteria to guide surveillance in patients not achieving early remission.
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.
To light a candle or read/post a tribute for Sue, please go here: 
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