A patient's relationship with their endocrinologist is... well, complicated. On one hand, endos spend years in school, learning all the intricate biomechanisms that make the body work, but on the other hand, they often sit behind a desk, doling out advice to patients who may have been living with a disease for longer than they've been familiar with it. Sometimes it can even feel like an endocrinologist is just reading out of a textbook.
Well, you're probably not too far off...
Diabetes is a far more complex disease than most of us would like to admit. Unless you're a skinny 6-year old girl wetting the bed and clocking in with a blood sugar so high the meter can't even give you a number, chances are your case is going to confuse some poor doctor. This is some of what was discussed at the recent annual conference of the American Association of Clinical Endocrinologists (AACE), held in Philadelphia last week.
Approximately 1,800 endocrinologists from the U.S. and abroad attended the annual meeting. There are roughly 4,000 endocrinologists in the U.S. (not a lot to serve our whole population!), although not all of them belong to AACE; the remainder of AACE's 6,500 members are based outside this country.
This year marks the first time AACE reached out to invite bloggers to attend. Why? "Bloggers are a huge voice in the diabetes and endocrine communities," says the organization's media rep Karen Pann. "You are a resource for patients and we wanted to engage bloggers to provide the information presented at AACE and share it with your readers for educational purposes." And share we shall!
Keep in mind that endocrinologists treat more than just diabetes, but it is a big portion of their workload. The other areas include thyroid disorders and growth hormones. For the AACE meeting, the sessions were predominately about diabetes, and I sat in on talks about children with type 2 diabetes (a fast-growing epidemic) and Latent Autoimmune Diabetes in Adults, or LADA.
Both of these issues are causing problems for doctors, in terms of identifying and treating patients. For a long time, diabetes was pretty clear cut: "juvenile diabetes" in kids and "adult-onset" in adults. But then things started shifting. Type 1 in adults and type 2 in kids. And then it started switching again: adults with a diabetes that kind of looked liked both, and kids with type 2 diabetes who could lose weight and come off their medications... On top of that, several endocrinologists at AACE discussed how even "classic" type 1 and type 2 diabetes could be caused by a variety of things never suspected before. So now we're really in trouble!
Both sessions that I attended were held as workshops, and the speakers encouraged participation from the audience. In several instances, case studies were presented and physicians were encouraged to suggest possible additional treatments. Each case study received at least a couple of different suggestions. I found it interesting, and a little worrisome, that so many doctors were on different pages with how to handle a given scenario.
But it appears that while endos (as we affectionately call them) know a lot about diabetes as a broad topic, there are an increasing number of idiosyncrasies popping up on a patient-by-patient basis that can throw doctors for a loop. Especially in the case of LADA, which to this day has no clear definition. For the most part, LADA is: diagnosis of an adult who has autoantibodies (the sign that the body is attacking itself, like type 1 diabetes), but does not require insulin at diagnosis (like type 2 diabetes). How do you treat this condition?
Most endos work off algorithms, or a set of "if this, then that" guidelines that tell an endo what to do. But these days, those set algorithms aren't so helpful, and more doctors are looking at patients individually for what to do — which is tricky, but ultimately necessary.
"I help make algorithms, but I don't like them," said Dr. Harold Lebovitz, a professor of medicine in endocrinology at SUNY Health Science Center in Brooklyn, NY.
The only sure thing, as evidenced by the unanimous vote by the endocrinologists in the room, is that LADA is it's own type of diabetes. It's not a subset of type 1 or type 2 diabetes, although it has similarities with both. It is its own thing! (which Amy says is somehow comforting to know).
Clearly, I'm not a doctor, just a type 1 PWD observing and musing on what she hears. However, I did meet two endocrinologists — and a CDE! — attending the AACE conference who all have type 1 diabetes themselves! I like to call them double-agents. I sat down with Dr. Doug Crumpler and his wife, Kelley, who practice near College Station, TX, and Dr. Michael Davidson, who practices in New Hampshire, to pick their brains about why they come to the AACE meeting, what they think of their fellow endos, and what we patients can do to have a better relationship with our own endos: