I have recently gotten a new endo since my last one moved. My new endo is a resident and seems excited to support me in my diabetes management. Since I’m also “new” in actually trying to manage my disease, I’m not sure what kind of relationship to have with my endo (use her just for scripts, use her for info, etc.) and I’m not sure what to get out of my visits (data analysis, scripts, general questions, etc.) Right now my main goal is to lower my A1c and to have a tighter range. How do you use your endo and what kind of relationship do you have? Any suggestions?
Also context: I’m working with a CDE who is T1D and very knowledgable so I’ve been using her for all my diabetes-related questions and for data analysis/figuring out my pump delivery settings the past few months.
Going with a list of items is helpful to make sure nothing gets missed.
Start with A1c test.
The Endo has their list they want to move down. I let them start with their routine.
Scripts are critical. I get two copies. One full set on paper for emergencies and one set electronically to the pharmacy for routine use. Every six months.
All of our pump and Dexcom data is already uploaded to Diasend and Clarity before we go in. So there is no need to hand any equipment over to anybody.
The Endo has online access to both Diasend and Clarity. They will review the data. Eyeball over and see if anything pops out that they want to discuss further. Might notice some trends and discuss possible change. Assuming we agree, we would change the pump setting. Endo does not touch nor change any setting on the pump as there is no need.
Once all that is out of the way, we usually chat for about 30 minutes. Some times we have particular questions/concerns and sometimes this is very open ended.
We have an appointment with Pediatric Endocrinology every 3 months.
This is a very individual question, so I think we will have different takes. For us:
We want our endo to be an advisor and a quoter of research. We intend to make the decisions.
We need an endo who is willing to be aggressive with treatment.
We need an endo who will support us, for instance w insurance issues, in major treatment choices. We need timely prescriptions, and sometimes many of them…
We need an endo who is up to speed on new tech and meds, and open minded.
We have found that we cannot work with medical professionals who look at a 1950s relationship with their patient, or who are catering to the average patient only.
I have similar expectations of my endo, and have had to work with an endo in the past who didn’t meet these expectations. So far my new endo seems to be up to the challenge.
Can you elaborate on this point here? And how have you communicated with the endo on this point specifically?
I’m much more involved with my CDE rather than the endo who, despite his great reputation in the field, doesn’t do much. He checks my weight and BP, orders bloodwork, writes prescriptions, doesn’t like to be asked too many questions or challenged. In and out in five minutes.
Then I go spend an hour with the CDE, who reviews Clarity/Diasend reports, makes suggestions for improvements that may have eluded me, zeros in on problems I identify but I’m having difficulty fixing, and if it comes up in what we’re talking about, mentions recent research and studies and takeaways from conferences and studies I might be interested in being in. Crucially (for me), she understands that patients are individuals whose management must be tailored to them: having worked with me for about 25 years, she knows I’m not afraid of lows and therefore prefer to be aggressive with my dosing, knows I am not interested in limiting carbs and prefer to enjoy the food side of life (though I know they are not mutually exclusive), knows I hate tubed pumps, and knows I want to manage myself as well as I can but also don’t want diabetes to dominate my day. I think she is priceless and it will be a sad day when she retires.
Since you are entering med school, any interest in becoming an endo?
Good question - I have an endo appointment next month and was thinking about this.
I have had T1 for about 32 years, have been mostly meeting my personal diabetes goals, my A1C’s have been in the mid 5’s for the last couple of years, and I make all my treatment decisions.
A few years back, I started having some control issues and was not seeing an endo. Eventually I convinced my GP to send me to and endo, but during the wait to see the new endo, I actually found most of my answers online in forums and managed to solve most of my problems before my first visit
I now see an endo once a year. I feel guilty taking up his time because he is very busy and I do not really need anything from him, but I keep going to keep up a relationship.
So now I go to the endo to:
Have a nice chat about diabetes, life, the universe, and everything. (My endo is a nice guy who happens to also be a T1D).
Show my CGM logs (usually the 14 day statistics.)
Find out what he has learned at conferences he attends.
Learn about any new devices/treatments/research and get samples.
Get a prescription for stuff.
Really - I go mostly for the chat.
My advise would be, if you have certain goals you are trying to meet, bring those up for discussion and see if there are any tips.
If you already make most of your treatment decisions, there is not a lot of value getting someone looking at your numbers and suggesting a new basal rate. If you need more confidence with treatment decisions, the focus on learning how to make them better and not just getting specific numbers. (You know the old give a man a fish versus teach a man to fish thing.)
I try to spend my time teaching them about good diabetes management. Just try to share with them some of the tricks and things they may not know about.
I try to spend part of the time teaching them about new technology and give them information on upcoming releases of pumps and insulins. I share with them some of the out-of-the-box techniques that might help their patients.
And I try to just encourage them to keep learning and to stick with it, because it takes a lot of time and experience to learn everything. Since they don’t have the luxury of doing it 24x7, I try to help them understand that it takes a while to learn it, and to not give up, but to keep applying themselves and to do the best they can.
I also ask if they have any specific questions that I can help them with.
That usually takes up all our time, so that’s about it.
I think in general most CDEs are more prepared to help read data and give the suggestions at the end of the day.
A year ago I would’ve said NO I CANT LET MY DISEASE DEFINE ME… but…now I’ve quit being so stubborn and realized that endo is fascinitating and aligns with a lot of my values and goals as a future physician. So endos high on my list but that can all change so you’ll have to check back in in 4 years !
But @Eric it’s so nice of you to take the time to educate your endo. Other patients are benefiting from it and that’s awesome. Now I hope to get to the point of that confidence in my knowledge of and maintenance of my disease!
We sugar surf, manage by the CGM, dose hard, and stop drops with sugar
We don’t hesitate in stacking insulin, sometimes multiple times, when we need to drop
We are ready to risk some time low when using a CGM
We use what basal and bolus factors we calculate from BG, whether or not they obey theoretical expectations
We are always ready to try new insulins or tech that we believe may improve A1c and Time-in-Range.
We have explained our techniques and defended them when they did not follow the hospital’s orthodoxy. We have asked for data about new products, and for prescriptions when needed. We have discussed new technologies and their applications to my son.
I must also say that we did not have the relationship we needed with our last endo. We did not want to deal hastily because we were on the verge of leaving on a 15 month trip, so we kept on going. We have great expectations for our next one though:-)
Somewhere in my head there’s a line I do not want to cross…which I can generally describe as “I’m self taught, my endo went to med school.” This causes me to listen and take seriously what my endo tells me. But I take it all with a heavy dose of salt, knowing what I know and what I don’t know about my own diabetes. All that said, I get along well with my endo and we have good conversations about whatever issues I bring up to discuss with her. We are way past the stage of her criticizing anything in my BG plots or insulin usage and she’s never refused a change of insulin, etc. that I have requested prescriptions for.
I’ve never been tempted to take my “pancreas self care” to this level:
