Jackie (samsmom) & Jordan: Cushing’s in young people, the fight to diagnose, the amazing gift of a GOOD endocrinologist. Jackie has appeared on Discovery Health discussing her fight for a cure for her younger daughter, as well. Later, the gene responsible for Sam’s illness was found. Her father carried the gene as did her two sisters. Jordan, Jackie’s oldest daughter, has recently had her adrenals removed.
Leslie had pituitary tumors removed twice at the University Of Michigan. After her second surgery, she gave birth to her second baby. She has had another recurrence and has had Gamma Knife Radiation April 3, 2008.
Ferol started noticing irregular symptoms in her late 20’s, but more developed since 2001, and rapidly more chronic as time went by. Finally, at her March 2005 physical, she had enough symptoms listed for her GP to start getting the connection to Cushing’s.
She was immediately referred to Dr. Adam Spitz, endocrinologist, with a battery of tests confirmed the initial diagnosis. Her pituitary surgery was performed 09-30-05. She has lost 30+ pounds after reaching a high of 190 prior to surgery.
Terry (Terry) is a long time pituitary Cushing’s survivor.
Terry had a pituitary surgery (in LA) in October of 2003 which did not cure her Cushing’s Disease. Then, Dec 13th, 2003 she had her BLA in a Wisconsin hospital. She also had an infection in her sphenoid sinus. It originated at the site of her pituitary surgery from October 2003. She had to be on a lot of antibiotics and narcotic pain relievers.
In Sept 2005 the surgeon removed the infection from one area, making another area clear…..
April is always Cushing’s Awareness Challenge month because Dr. Harvey Cushing was born on April 8th, 1869.
Thanks to Robin for this wonderful past logo! I’ve participated in these 30 days for Cushing’s Awareness several times so I’m not quite sure what is left to say this year but I always want to get the word out when I can.
As I see it, there have been some strides the diagnosis or treatment of Cushing’s since last year. More drug companies are getting involved, more doctors seem to be willing to test, a bit more awareness, maybe.
How fitting that this challenge should begin on April Fool’s Day. So much of Cushing’s Syndrome/Disease makes us Cushies seem like we’re the April Fool. Maybe, just maybe, it’s the doctors who are the April Fools…
Doctors tell us Cushing’s is too rare – you couldn’t possibly have it. April Fools!
All you have to do is exercise and diet. You’ll feel better. April Fools!
Those bruises on your legs? You’re just clumsy. April Fools!
Sorry you’re growing all that hair on your chin. That happens as you age, you know. April Fools!
Did you say you sleep all day? You’re just lazy. If you exercised more, you’d have more energy. April Fools!
You don’t have stretch marks. April Fools!
You have stretch marks but they are the wrong [color/length/direction] April Fools!
The hump on the back of your neck is from your poor posture. April Fools!
Your MRI didn’t show a tumor. You couldn’t have Cushing’s. April Fools!
This is all in your mind. Take this prescription for antidepressants and go home. April Fools!
If you have this one surgery, your life will get back to normal within a few months. April Fools!
What? You had transsphenoidal surgery for Cushing’s? You wasted your time and money. April Fools!
I am the doctor. I know everything. Do not try to find out any information online. You could not have Cushing’s. It’s too rare… April FOOL!
All this reminds me of a wonderful video a message board member posted a while ago:
So now – who is the April Fool? It wasn’t me. Don’t let it be you, either!
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.
When I got kidney cancer, I had to stop the GH, even though no doctor would admit to any connection between the two.
Last year I went back on it (Omnitrope this time) in late June. Hooray! I still don’t know if it’s going to work but I have high hopes. I am posting some of how that’s going here.
During nephrectomy, doctors removed my left kidney, my adrenal gland, and some lymph nodes. Thankfully, the cancer was contained – but my adrenal insufficiency is even more severe than it was.
In the last couple years, I’ve developed ongoing knee issues. Because of my cortisol use to keep the AI at bay, my endocrinologist doesn’t want me to get a cortisone injection in my knee. September 12, 2018 I did get that knee injection (Kenalog) and it’s been one of the best things I ever did. I’m not looking forward to telling my endo!
I also developed an allergy to blackberries in October and had to take Prednisone – and I’ll have to tell my endo that, too!
My mom has moved in with us, bring some challenges…
But, this is a post about Giving Thanks. The series will be continued on this blog unless I give thanks about something else Cushing’s related 🙂
I am so thankful that in 1987 the NIH existed and that my endo knew enough to send me there.
Can someone please help me? Over the past few years I have gained over 40 lbs, suffer from extreme fatigue, muscle cramps, headaches, just to name a few. I also have a hump between my shoulders. I have gone to see my primary care physician and asked about Cushing’s syndrome and she said that there’s just no way I could have this because it is so rare. I asked for a referral to see a endocrinologist and she finally agreed. After doing some research on this debilitating disease, I am convinced that I am it’s next victim. I am so scared. What can I expect from this endo appointment?