We go to their offices for checkups, and depend on them for our lab tests and prescription refills. Yes, endocrinologists are the center of our healthcare team for many of us living with diabetes. But what about those PWDs (people with diabetes) who work as medical professionals themselves? Do they handle their D-management all on their own, based on their own expertise? Or do they also turn to medical professionals (their peers) like the rest of us?
To put it succinctly, do endos with diabetes have their own endos? Curious, we reached out to endos around the country to find out what their preferred methodology is for working with their own diabetes doctors.
Of the dozen or so endos we heard from, what we found is: There's no consensus. About half say they have endos, while the others don't. Some see them on a very limited basis, only when their primary care physicians can't take care of diabetes-specific needs. And others say they have 'endo friends' help them out with prescriptions at times.
Here are comments from some type 1 endocrinologists who were gracious enough to share their personal 'Endo or No Endo' stories with us:
Jeremy Pettus, type 1 since 1994, Assistant Professor of Endocrinology at UC San Diego
Jeremy's a well-known personality in the Diabetes Community who’s a regular on the diabetes speaking circuit and is actively involved with Dr. Steve Edelman in the TCOYD conference series and the new We Are One Diabetes network (for those with T1D who work professionally in the field). Just recently, Jeremy and his wife welcomed their first baby boy Cooper into the world. Congrats to the Pettus family!
“Everybody is different,” he says, regarding PWD-endo choices to see their own endos or not. “I don’t really ‘see’ an endo myself. Dr. Steve (Edelman, colleague and founder of TCOYD) writes me prescriptions when I want to try things, and I do the same for him. I have a primary care doc I go to, and get labs done there. But I don’t have anybody review my blood sugars or make insulin adjustments. I think I’m too proud to do that!”
Rachel Nelles, living with type 1 since 1979, Family Nurse Practitioner in Fargo, ND
Rachel doesn’t see an endo either, but instead goes to a primary care doc in internal medicine for her medications and labwork.
“The only time I have seen an endo has been when I tried a pump, as my PCP didn’t feel comfortable ordering this,” she says. “Both endo departments I have worked in have been small, so I didn’t feel comfortable having them know too much about my diabetes and health.”
Shara Bialo, living with T1D since age 9, Pediatric Endo in Rhode Island
Shara just finished her three-year pediatric endo fellowship in June, and stayed on with that group at Brown University in Providence, RI. Before that, she was doing her general pediatric and medical training for seven years in Miami, FL. Shara also just recently marked her 22-year diaversary in May.
Yes, Shara does have an endo. As she tells us, it’s actually a crazy “Diabetes Inception” phenom because her endo also has type 1 too… Whoa!
“I have always had my own endocrinologist, although I milked my time with my pediatric endocrinologist and did not transition to the adult world until after college," she says.
"I was in medical school when I met with my first adult endocrinologist, and it was far more intimidating than I had anticipated. Looking back on it, I don't think we were a great patient/physician match, but I didn't realize at the time that doctor-shopping to find someone I connected with was a worthwhile endeavor.
"A few years later, my physician moved away and I was forced to find someone new. This time, I surveyed my medical colleagues and patients and was given the name of an endocrinologist with a more gentle approach and I actually looked forward to seeing her every three months. This experience taught me a lot about the importance of a connection between physicians and patients -- and now I always tell my own patients that it is their right to choose the physician that works best for their needs, even if it isn't me.
"I attended medical school and residency in Florida, where self-prescribing is not allowed. So even if I wanted to, I wouldn't have been able to treat myself. Now that I'm in Rhode Island, self-prescribing is allowed but I'm not interested in treating myself. I think physicians in any field are better off being treated by others than solely by themselves. Involving someone else in my care is necessary to evaluate the "big picture" -- treating myself and managing my own diabetes hour-to-hour can make it hard to see the forest for the trees.
"My situation is a little different than the adult endocrinologists, because I treat children. Although the basic principles are the same, diabetes management in children can be different -- we employ different glucose goals, we're more conservative with our treatment, and we really don't deal with the specialty areas, such as diabetes in pregnancy. Also, my adult provider offers me off-label options, such as Invokana for help with managing my T1D, that pediatric endocrinologists usually don't dare experiment with in children.
"My endocrinologist is not just a vector for prescriptions; he pays attention to my A1c and accompanying glucose logs and makes suggestions for my management, but he also does a great job of incorporating my thoughts and opinions. I suspect he does that with everyone, though, and not just because of professional courtesy. He's a wonderful physician.
"Another fun twist is that my endocrinologist has type 1 diabetes himself, so he often shares what tips and tricks have worked for his own management and is never judgmental. I enjoy this aspect of the visit, and emulate it with my own patients when applicable. A decent amount of my time with my endocrinologist is spent 'talking shop' -- exchanging patient experiences, commiserating over shared annoyances like insurance fights, and adjusting to new electronic medical record systems. It is nice to be able to relate to him on multiple levels, and makes my visits enjoyable no matter what that dreaded A1c value is.”
Tom Knecht, living with T1D since 1976, Clinical Endocrinologist in Salt Lake City, UT
Tom was diagnosed during his college years at UCSD, and has since had a long career in endocrinology.
“I am my own doctor,” Tom tells us. “I take care of myself and know what I’m doing. “I don’t want to waste anyone’s time.”
He’s been wearing a Dexcom CGM (continuous glucose monitor) since the first generation, and while he says he’s put a lot of patients on both CGM and insulin pumps, he just doesn’t choose to wear a pump himself – except for one time in about 1982.
“I don’t mind shots personally," he says. "I have prescribed insulin pumps when people want one. But I haven’t pushed it."
Tom says he does through to another doctor for his CGM supply orders, but that’s it.
Throughout his life, Tom says he’s been very active with running, and diabetes hasn’t stopped him from anything in life.
Tom tells us: “I love being a diabetic, it’s made me a better doctor. This is not a mystery and you need data a lot. I have that. Before my CGM, I was testing 12 to 15 times a day and knew what I was doing, but now with CGM, I am really safe.”
(Note that we connected with Tom through the We Are One Diabetes group online, and are happy to recognize his love for his Chesapeake Bay Retriever, Bert :)
These stories definitely underscore how important personal choice is in diabetes care for ANYONE.
And as always, the mantra Your Diabetes May Vary (hat tip to Bennet Dunlap) applies.