So just passed my 6 month mark (T1) and am starting to realize that I have no idea what my relationship with my endocrinologist should be about. I don’t know how to tell if he’s doing a good job for me. So far I’ve had 2 appointments- the first one was a total blur- shock and information over load and me staring at the syringe. #2 @ 3 mos was me telling him about my numbers-and how I’ve been feeling- he briefly looked at my standard deviation and glucose report (downloaded from my meter) he says “you’re doing great” and I go home. Soooooo… what should I be asking and what should he be doing??
Have you had any meetings with a dietitian? If there’s one available I’d ask to have a session or two. I found it very helpful even before I started carb counting. I have a pretty good endo. Now that I’m hooked up to a CGMS and a pump, I’ve been seeing him every three months or so. I’ll probably drop down to twice a year if I don’t have any issues. If there’s a CDE available to you, take advantage of that as well. I got a lot of really good information on day-to-day management from that experience. You will know how you’re doing by the lab results. If you’ve got a decent A1c, he’s doing his job and you’re doing yours. You should probably have your lab work done at least twice a year. Better would be every quarter. Unless you’re experiencing problems are aren’t feeling well, he’s doing fine. If you have concerns and questions that don’t seem to get adequate answers, you may seek a different endo. Also, don’t be afraid to call and ask questions as they come to you. Anything you have a question about is important. Knowledge is power, especially with diabetes. Congratulations on doing so well right out of the gate.
When I was first diagnosed, I relied a lot on my endo and my diabetes care team for guidance. Back in the md-80s, we didnt have the expansive internet to consult so all of the information available to me about diabetes came funneled through my endos clinic.
Over the years, I learned which labs needed to be performed and when they needed to be perfromed, learned to read my lab results, and of course learned a lot oabout diabetes in general through the internet.
Today, I set a lot of my own goals but I still work with my endo to achieve my goals. I am not a doctor and I believe that if I’m going to be consulting a doctor, I should probably have one that I feel is competent enough to follow their advice. It is very important, however, for me to have an endo that will listen to what I have to contribute and, when appropriate, be able to say, “ok, that’s what we’ll do then. Here’s how we’ll do it.”
A good endocrinologist should
provide a ready made group of people-resources that you can tap into (ask questions of, expect they know your history, be professional sources of information)
have phone number access for himself/herself and his group as well as those he refers to; able to return calls within 4 hours.
be clear about what services he actually provides (in-hospital? email? 9-5 only? evening hours?), what he doesn’t/can’t provide, and what his team can be expected to provide (dietitian, CDE, exercise consultant, assistant)
be proactive toward reducing the A1c by being a ready encyclopedia of medications, pump therapies, CGM rationales
be a listener who can pick up on what you’re saying and ask questions to clarify your and his/her thoughts re potential therapies, what’s going on in the body
Sometimes it takes a patient with a lot of communication skills to get an endo to communicate with more than grunts. Scientists are sometimes great at numbers and not too great at verbal acuity. So ask questions about these things, and maybe you’ll have some answers from him on what he might be doing
