Cushing’s Syndrome Patient Advisory Board: Patient Qualifier
Virtual Patient Panel for Cushing’s Syndrome Patients
Patients that are accepted will be compensated for their participation.
Q1: Are you a U.S. Citizen and at least 18-years or older?
Q2: Have you been diagnosed with Cushing’s Disease (CD) or endogenous Cushing’s syndrome (CS)?
Q3: Did your doctor find a tumor on your Pituitary Gland?
Q4: You must currently be taking a prescription medication to treat your Cushing’s. The medication must include ONE of the following:
- ISTURISA® (osilodrostat)
- KORLYM® (mifepristone)
- SIGNIFOR® (pasireotide), OR SIGNIFOR® -LAR (pasireotide).
Q5: You must have been on your current medication for at least 1-month (ISTURISA-only), and all other Cushing’s medications for ≥3-months.
If you answered all the questions YES and are taking a prescription medication to treat your Cushing’s, please contact:
KIRSTEN YORK, Vice President of Discovery, at ENTRADA.
- Email: email@example.com
- Mobile: 936.232.5940
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.
James Findling, MD, is a veteran of the endocrinology field, a clinical practitioner and a Cushing’s syndrome expert. For his efforts in these areas, particularly clinical practice, the Endocrine Society is honoring him with its Outstanding Clinical Practitioner Award at ENDO 2019 in New Orleans.
Findling, who currently serves as director of community endocrinology services and clinical professor of medicine at the Medical College of Wisconsin in Milwaukee, has made his clinical practice a national one as, according to the Endocrine Society, he receives referrals from across the U.S. In addition, he has played an important role in Cushing’s syndrome research, including breakthroughs that the Endocrine Society has incorporated into its own clinical practice guidelines.
In a conversation with Endocrine Today, Findling discussed his serendipitous entrance into endocrinology, his own experience with medical history and his dream of playing golf with Barack Obama.
What was the defining moment that led you to your field?
Findling: In 1977, I was a resident in internal medicine at what was then the Milwaukee County General Hospital, which doesn’t exist anymore. I did an endocrinology rotation, and my attending physician was James Cerletty, MD. Endocrinology was the farthest thing from my mind as something I would be interested in, but I was assigned to do this rotation and it changed my life. I thought, “Oh my goodness. This is fascinating.” Dr. Cerletty was a fabulous teacher and great mentor. The reason I chose endocrinology was because of that 1-month rotation. I had never done it previously, and I just fell in love with it. It was primarily because of this one man, who just died recently. He changed my life.
I was a chemistry major in college, and I enjoyed the pathophysiology and the biochemistry of it. I remember in those days, it was a little bit more complicated and convoluted to assess thyroid function, and it was never something I appreciated or understood. The concepts like T3 resin uptake I didn’t quite understand. Jim Cerletty made me understand how to interpret thyroid function studies, how they were done, how T3 resin uptake was measured, and it made all the difference in the world; a light bulb went off.
What area of research in endocrinology most interests you right now and why?
Findling: Pituitary-adrenal disorders. How I got interested in that, it’s kind of an interesting story in itself. After I did the month with Dr. Cerletty, I got interested in endocrinology, and 6 months later, I was in a general medical clinic seeing a woman with obesity, hypertension and diabetes. I went in and said to the attending physician at the time, “Well, maybe she has Cushing’s syndrome,” and I got kind of reamed out. “That’s rare. Nobody has that. It’s a stupid thing to think about.” He was trying to embarrass me and it upset me. I said, “How do you know she doesn’t have Cushing’s if you don’t do the testing?”
So, I started looking into it and realized nobody knows. Maybe some of these people with obesity and hypertension do have Cushing’s syndrome, but the testing was cumbersome and stupid and didn’t make any sense to me. About that time there was an article in The New England Journal of Medicine about pituitary surgery for Cushing’s disease from UCSF. I read that and said, “That’s where I’m going. I’m going there to learn about Cushing’s.” I applied and, fortunately, I got in and the rest is history. It’s because some attending physician embarrassed me by saying, “That’s stupid. Nobody could have Cushing’s syndrome,” and I’ve spent the rest of my life trying to figure that out. It’s been my passion for the last 40 years.
What advice would you offer a student in medical school today?
Findling: You need to find something that you’re passionate about in medicine. For many young people, that requires specialization into a relatively focused area so that they can develop a higher level of expertise. For some, that may be a more general area, and for some it may be based on location. For example, they might like to be a family physician in a small town where they can do a great deal of good. Either way, you must find something that you’re passionate about within our field, because if you’re not, you’re going to be unhappy. This is hard work and you’re going to spend many hours doing this, so you better find something you enjoy doing, whatever it is. There are so many different aspects from psychiatry to surgery to hospitals. There are so many different things you can do, but you have to find something that you like.
I hear a lot about work-life balance, and I understand that particularly in young physicians, this is a critically important part of being a doctor. The problem is if you’re going to be a physician, there’s going to be a lot of work. Half of your time or more is going to be working. You better enjoy that part of it because if you don’t enjoy the work part of it, you’re not going to enjoy the life part of it.
Have you ever been fortunate enough to witness or to have been part of medical history in the making?
Findling: I was lucky to go to University of California, San Francisco. Shortly after I got there, there were several people cloning the growth hormone gene and the insulin gene. The foundation of Genentech and the idea of making growth hormone was just fermenting at UCSF when I was there. In one of the labs was Herb Boyer, PhD, who was one of the first people to clone growth hormone, and he was on the cover of Time magazine. The head of the metabolic research unit and my boss was John Baxter, MD, who was president of the Endocrine Society years ago. There is now a prize named after him; he was on the cover of The New York Times magazine. So, here I am at UCSF and somebody in the lab down the hall is on the cover of Time magazine and my boss was on the cover of The New York Times magazine, so it was an exciting time to be at UCSF in the late ’70s and early ’80s.
Another defining moment in my career from a research perspective was when I was a fellow, I had to do a project. We were seeing a lot of patients with Cushing’s — of course, that’s why I went there — and in those days we had no good imaging. There were no CT scans, no MRI, there was no way to image the pituitary gland to find out whether there was a tumor. By the late ’70s it became obvious that some patients with Cushing’s syndrome didn’t have pituitary tumors. They had tumors in their lungs and other places, and there was no good way of sorting these patients from the pituitary patients.
My mentor at UCSF, Blake Tyrrell, MD, had the idea of sampling from the jugular vein to see if there was a gradient across the pituitary. I took the project up because I didn’t think this is going to be helpful due to there being too much venous admixture in the jugular vein from other sources of cerebral venous drainage. We went into the radiology suite to do the first patient. As I was sampling blood from the peripheral veins, the interventional radiologist, David Norman, MD, says, “Would you like to sample the inferior petrosal sinus?” I said, “Why not? It sounds like a good idea to me.” That turned out to be helpful. We then studied several patients, and it eventually went to publication. Now everybody acknowledges it is necessary, maybe not in all patients with Cushing’s, but in many patients with Cushing’s to separate pituitary from nonpituitary Cushing’s syndrome.
That was kind of a defining moment in terms of my research career because it was complete serendipity. I had never even heard of this vessel before. I went to the library to get a bunch of books to try to figure out what the venous drainage of the pituitary gland looked like. That was not easy to find. That was the defining moment of my research career as a postdoctoral fellow in endocrinology at UCSF. I was blessed because there were so many people smarter than me that it was a big help and an inspiration.
What do you think will have the greatest influence on your field in the next 10 years?
Findling: Most people would say genetics. The genetic diagnosis of so many disorders and the connection of disorders because of germline mutations or somatic mutations in tumors is just exploding. Whether you talk about pheochromocytomas, pituitary tumors in Cushing’s disease or adrenal tumors, you can go on and on and on.
Genetics wasn’t even on the radar screen when I was in training, so I feel a little bit lost because I’m behind the eight ball in terms of trying to keep up with that. Nobody was talking about that back in 1979, and I wish I understood it a lot better than I do. If I was going to think that there’s going to be anything that’s going to change the future of endocrinology it’s that, and not just for diagnosis but its potential applications for therapy.
What are your hobbies/interests outside of practicing medicine?
Findling: I’m an avid golfer. I live in Wisconsin, so right now it’s only 4° — so not too much golfing going on. I golf in the summer about once a week. I have a nice group of people I play with, and its one of my passions.
I run a lot. Not in 4° weather, but when the weather’s nice I run a lot and my goal is to run a half marathon this year. I’ve done one in the past, but it’s been many years since I’ve run one. I still enjoy running. Fortunately, my hips and knees and ankles and feet are capable of withstanding it. I don’t run very far. Maybe 8 to 10 miles per week.
I enjoy gardening. My wife and I, she loves flowers and I love vegetables, so we have a nice garden we put up every spring. So that’s another passion I have. We also love live theater, so we go to a lot of theater here in Milwaukee and all over Wisconsin.
Whom do you most admire and what would you ask that person if you had 5 minutes him/her?
Findling: The person I’d most like to meet is President Barack Obama. He’s one person I have a lot of admiration for. I would tell him I want more than 5 minutes. I’d want to play golf with him. I think his skill level is about the same as mine, so we’d have a competitive game. We’d probably do a lot of trash talking along the way.
I would ask him, “How did you stay so calm and have so much grace with all the criticism he got from so many people?” Some criticism is always a little bit justified, but a lot of it was so unjustified. How did he stay so calm and not raise his voice? Sometimes when you’re getting a lot of criticism and people are saying negative things about you, how do you stay professional and graceful? It’s not easy to do.
What was the last book you read , and what did you think of it?
Findling: The last one I finished was American Dervish. It’s a novel by Ayad Akhtar, who grew up in the suburbs of Milwaukee. His parents are from Pakistan, and he grew up as a Muslim. This young man is going to be a force in American literature.
This particular book is the story of a young Pakistani-American boy growing up in the American Midwest and a growing up story with the struggle of identity and religion. It’s a fascinating read.
In fact, Akhtar has won a Pulitzer Prize for one of his plays called Disgraced. He’s just had a play on Broadway that was nominated for a Tony Award called Junk, which the Milwaukee Repertory Theater just performed here. My wife and I saw it recently and it was entertaining
Much of what he’s written is regarding Muslims and the struggles they have living in the United States. If you haven’t seen one of his plays or read any of his stuff, I think he’s going to be a real force. He’s still a young man and he’s creative and provocative. This book, as I understand it, he’s going to make it into a play, and I wouldn’t be surprised if someday it might even be a movie. It’s an interesting perspective and I enjoyed it.
Thirty-one former customers have filed suit in New Jersey State Court against Mario Badescu, Inc., a skincare company based out of Edison, New Jersey, and Mario Badescu Skin Care, Inc., a skincare salon in New York.
The plaintiffs allege that they were injured by potent and undisclosed steroids in two of Mario Badescu’s face creams, Control Cream, and Healing Cream, which were marketed as products that contained only “botanical” active ingredients that were safe for daily use. The complaint alleges that contrary to what Mario Badescu told the public, Control Cream and Healing Cream contained two steroids: hydrocortisone and triamcinolone acetonide. The complaint also alleges that Mario Badescu’s products contained higher than prescription-strength doses of triamcinolone acetonide. Both steroids pose serious health risks to both the skin and the body’s adrenal system.
The plaintiffs were unaware of the steroids in Mario Badescu’s products and used the products on their faces, usually daily, for as long as fourteen years. Many of the plaintiffs allege that they unwittingly became addicted to the steroids such that even a day without use of the Products caused severe and painful withdrawal reactions. Moreover, many of the plaintiffs allege that they suffered from steroid-related ailments while using Control Cream or Healing Cream, including cataracts, glaucoma, mood disorders, heart issues, elevated cortisol levels, adrenal system suppression and Cushing’s Syndrome. Plaintiffs allege that because they did not know they were using steroids at the time, they were unable to inform their physicians about the true source of their injuries and were repeatedly misdiagnosed by their medical providers.
“Mario Badescu secretly added an addictive prescription steroid to its cosmetic face creams, then told its customers that the creams were safe for daily use,” Plaintiffs’ counsel, Gary E. Mason said. “Our clients suffered devastating injuries as a result of this deception,” Mason added.
The plaintiffs are represented by John C. Whitfield, Gary E. Mason, Esfand Nafisi, and Caroline Ramsey Taylor of Whitfield Bryson & Mason LLP, and Michael Galpern, Andrew Bell and Janet Walsh of Locks Law Firm, LLC. For more information about the lawsuit, contact the firm by phone at (202)640-1167.
The name of the case is Restaino et al. v. Mario Badescu, Inc. et al., No. MID-L-5830-14 (N.J. Super. Ct. Law Div., filed Sept. 25, 2014).
See us on WTVH/WEHT Evansville! “Tristate Law Firm Takes On Major Cosmetics Company“
13th Annual Conference for Adults with Endocrine Disorders
in Partnership with Barrow Neurological Institute Pituitary Center
February 28th, 2019 – March 3rd, 2019
Schedule of Events
5:00 pm – 7:00 pm Welcome Reception, Wyndham Garden Phoenix Midtown
9:00 am – 4:00 pm Exhibitors, Barrow Pituitary Center
10:00 am – 12:00 pm Educational Segments, Barrow Pituitary Center
12:00 am – 1:00 pm Lunch (included)
1:00 pm – 3:00 pm Educational Segments, Barrow Pituitary Center
5:00 pm – 8:00 pm Group outing to Scottsdale Waterfront
10:00 am – 12:00 pm Educational Segments, Barrow Pituitary Center
12:00 am – 1:00 pm Lunch (included)
1:00 pm – 3:30 pm Educational Segments, Barrow Pituitary Center
9:00 am – 1:30 pm Educational Segments, Wyndham Garden Phoenix Midtown
Friday Educational Segments at Barrow Pituitary Center
10:00 am Managing Cushings: Navigating Through the Maze, Yuen
10:00 am Managing AGHD: Daily and Beyond, Knecht
11:00 am Hypothalamic Obesity: Not Just Calories In, Calories Out, Connor
12:00 pm LUNCH (included)
1:00 pm Me, Myself and My Adrenal Insufficiency, Yuen
2:00 pm Navigating the Medical Maze, Herring
Saturday Educational Segments at Barrow Pituitary Center
10:00 am Beyond AGHD and Cushings: Familial and Genetic Factors, Stratakis
11:00 am Q&A, Stratakis
12:00 pm LUNCH (included)
1:00 pm Tools for Coping with my Endocrine Disorder, Jonas
2:00 pm Finnigan and Friends: A Year in AI Training, Palmer
2:30 pm Quality of Life Study, Cushings, Edgar & Keil
2:30 pm Life is What You Make Of It, Jones
Sunday Educational Segments at Wyndham Garden Phoenix Midtown
9:00 am Preventing Muscle Wasting and Nutrition, Fine
10:00 am Nuances of Treating Hypothyroidism, Friedman
11:00 am Macrilen Stimulation Test for Growth Hormone Deficiency, Friedman
11:45 am The New and The Old for Diagnosing Cushing’s Syndrome, Friedman
12:30 pm Ask the Wiz, Friedman
Barrow Neurological Institute at St. Joseph’s Hospital and Medical Center
Goldman Auditorium and Sonntag Pavilion
350 W. Thomas Rd.
Phoenix, AZ 85013
Transportation will be provided on Friday and Saturday between the Wyndham Hotel to Barrow for an hour prior to the segments and an hour after close of the segments. The hotel is approximately 1/2 mile away from Barrow Pituitary Center if you choose to walk or travel there on your own.
Hotel Room Rates and Reservations
Wyndham Garden Phoenix Midtown
3600 N. 2nd Ave.
Phoenix, AZ 85013
$109 per night + tax. Includes free wifi, parking and buffet breakfast
To make hotel reservations call 602-604-4900 and ask for The MAGIC Foundation guest room block. Refrigerators are first come so be sure to request one when making your reservation.
Transportation is not provided to/from the hotel from the airport. The Wyndham is approximately 9 miles from the airport. Preferred airport is Phoenix, AZ – PHX – Sky Harbor Intl.
Deadline to Register and book your hotel is January 28, 2019
I remember someone on the House TV series trying a stunt like this on the episode titled Deception.
At a betting parlor where House happens to be, a woman collapses and House makes sure she gets to the hospital. He thinks she has Cushing’s syndrome while Cameron starts to think she has Münchausen syndrome, a syndrome at which the patient creates the symptoms of a disease, guaranteeing them attention and sympathy.
Rare Case of Woman Manipulating Saliva Tests to Support Cushing’s Diagnosis
Late-night measures of cortisol levels in saliva may not be all that helpful in diagnosing Cushing’s syndrome, a group of physicians discovered upon learning that a difficult to diagnose patient had manipulated the samples.
Although this behavior is extremely rare, the research team from the University of Calgary in Canada, argued that — when a diagnosis becomes difficult — it may be advisable to confirm suspicions using another and more reliable method that can distinguish natural from synthetic glucocorticoids.
The study, “Factitious ACTH- dependent, apparent hypercortisolism: the problem with late night salivary cortisol measurements collected at home,” was published in the journal Clinical Endocrinology.
The case report described a woman who was admitted to a specialist clinic after two endocrinologists had failed to diagnose what they suspected was cyclic Cushing’s syndrome.
The woman had complained of fatigue and weight gain over the past four years despite weight loss banding surgery, and declined taking steroid medications. The examination did not reveal particular Cushing’s symptoms.
Physicians started an investigation, including overnight dexamethasone suppression tests and late-night salivary cortisol tests, which indicate increased levels of cortisol likely caused by abnormal functioning of the ACTH hormone.
Imaging did not show any suspected lesions in the pituitary and adrenal gland, and all further examinations did not reveal any disease changes that might have contributed to the increased cortisol.
The woman was put on a dopamine agonist. This treatment triggered a loss of eight kilograms (almost 18 lbs) over six months, and the woman said she was satisfied with it. But two late-night cortisol measurement showed continuing high cortisol levels.
When the clinic started using a new type of analysis to measure cortisol, however, findings changed. The new test, which was more sensitive, indicated massively higher doses of cortisol in re-analyzed saliva samples compared to the older results.
The new test could detect synthetic glucosteroids, but could not indicate if synthetic steroids were responsible for the higher levels seen in the retest. So the team used a method called liquid chromatography-tandem mass spectrometry. This technique can identify specific molecules, and revealed that the women had manipulated the samples using prednisone.
The woman’s physician also paid a surprise visit to collect a new saliva sample, which turned out to have normal cortisol levels.
The woman neither denied or confirmed manipulating the samples. And the team was contacted two months later by her new physician, requesting confirmation of her Cushing’s syndrome and details on her case.
The researchers believed the woman most likely has what is known as Munchausen’s syndrome, a mental illness that leads patients to feign physical disease. A 1995 report by the National Institutes of Health showed that 0.7 percent of all people investigated for too high cortisol had this syndrome.
Despite the rarity of this case, the team argued that chemical analysis is a valuable tool for both determining sample manipulation in difficult Cushing’s syndrome cases, or a different potential problem.
They also cautioned against putting too much trust in very elevated late-night cortisol, particularly when the symptoms do not match the cortisol increase.