On a panel to find out what type 1s want from their doctors!


I will be participating in a panel next Tuesday with the International Diabetes Center in MN about creating a new survey with questions for diabetics to answer in order to get new and more current information on what they need from their doctors (specifically endos) There will be an emphasis on looking for warning signs of diabulimia and other Eating Disorders which are prevalent in the type 1 community. Anybody got things they want me to keep in mind, issues/questions you think are important for this survey?

Thanks for your input

I would like to see doctors be better informed and more willing to discuss food issues. To me, what you eat is as important as insulin except, fortunately, you don’t need a prescription to go grocery shopping.

I had a wierd medical situation recently that was like $15K in tests (cardiac…all negative…) but, in the course of it, I reviewed basal rates w/ my endo and reached the point where they were turned down too much and my numbers ran up and, in the course of our dialogue (through the nurse via email…) she (I presume the doc but I dunno for sure…) suggested an appointment with a dietician and I was like “nah, why bother, I’ll just keep winging it…”.

I had moved and switched docs not too long ago but my other endo was sort of the same way “oh, food, talk to the dietician” who, of course, wanted me to double the # of carbs I was eating, even though I explained to her I’d lost weight and wanted to continue doing so. I didn’t get the point.

What I could’ve used 25 years ago: a better transition from a pediatric endocrinologist to a endocrinologist who knew anything at all about T1.

I had a really super good team of pediatric endocrinologists as a kid. World class. And of course they knew all about kids and young adults with T1. When I “graduated” to the adult world, I had years after years of crappy endos who didn’t know hardly anything about T1, and really didn’t know what to do with a 19 year old T1. Maybe my standards were too high.


I had the same experience. Thanks for your thoughts :slight_smile:


Thank you! I agree with all of this, specifically the idea of feeling like your doctor actually cares about you, even between appointments, there needs to be some sort of system in place. Diabetes doesn’t just happen every 3 or 6months at a check up or lab test, its 24/7 all the time! Thanks for your input :slight_smile:

I second the need for endos who are more proficient and versed in treating Adult Type 1. Here are some things that I feel are absolutely necessary in an good endo practice, especially for Type 1s:

  1. My two best endo offices have had CDEs or PAs who you could contact via e-mail in between office visits with BS logs and they would help you make adjustments without having to go in for a visit (without charging you like you had an office visit)
  2. One of my endo’s offices had a dietitian on staff, so twice a year or so you’d see the endo, CDE and then a dietitian all in the same appt if you needed to–VERY convenient.
  3. In office lab work, and in-appointment A1C testing
  4. My current endo’s office has an on-line portal for patients where we can see lab results, send e-mails to the endo, nurse, PA (like if we have a question or need a Rx refill), and make appointments. It is SO nice!

Basically, I think the overall point is that endos and their staff need to be MUCH more accessible outside of the quarterly visit. Diabetics who are constantly adjusting insulin rates often need adjustments to prescriptions in between appointments, so it is really nice when endo offices can make that easier.

Also, as treatments get more expensive and complicated (I’m thinking CGMs & pumps, and new kinds of insulin, here) we need endos who have knowledge about how to navigate the insurance system and who have an idea of how much things cost that they are prescribing for their patients.

I’m sure there are a lot more things I should say, but those are the big ones for me! Thanks!

One of the very strange things that occurs with doctors/endos is denial about the prevalence of adult-onset Type 1 diabetes (both rapid-onset and slow-onset) and mistreatment of adult-onset Type 1 diabetes. Too often, doctors will not give insulin to a person with adult-onset Type 1 diabetes, but instead try to treat the person with meds for Type 2. Exogenous insulin is the only treatment for T1.

OMG, so many things:

  1. Be accessible. This means not just talking to me during visits, but either calling or emailing (whatever my preference is) between visits to see how I’m doing. My current endo is very accessible and I love that about her.

  2. Don’t treat me like a sick person. I am very active and hate when endos tell me about all the things I shouldn’t do. I’ve run marathons, climbed mountains, camped, etc. All with diabetes at my side. Help me figure out how to continue to do these things.

  3. Recognize that my life isn’t consistent from day to day because I have, oh, I don’t know…A JOB, A FAMILY, A LIFE! Endos seem to always want your life to fit in some neat little box. It just doesn’t work that way.

  4. Respect how I want to log my numbers. If logging my numbers and info on an iPhone app is easiest for me, learn how to look at that data. Don’t tell me that I have to fill out YOUR little sheets because that’s what’s easiest for you. I’m the freaking patient!

  5. Recognize that sometimes I know what I’m doing. I mean, I’ve had T1D longer than most endos have been in practice. I’ve learned a lot about patterns and how my body responds. Acknowledge that, please.

  6. Keep in mind that, especially for women, an over focus on weight and food can lead to eating disorders. This has been ignored. Recognize that sometimes I may need to back off carb counting and be a little more “normal.” I guess I want endos to recognize the kinds of people (i.e., people like myself who are perfectionists by nature) who may be more prone to developing eating disorders. This is hard, but very important.

  7. See me on time. Just like you, I have a job. Keeping me waiting for an hour is unacceptable and all it does is force me to put off going to the doctor.

  8. If I call you, call me back. Don’t pass messages through office staff, because they often get mixed up in that old game of telephone. I’ve had this happen so many times over the years and it drives me crazy!

  9. Please don’t order tests that aren’t necessary. My current endo is really good at considering things like costs when prescribing medicine and ordering tests. I appreciate that because diabetes is expensive.

  10. Respect my decision for treatment options. If I say I want X (whether that’s an insulin pump or a CGM), respect my decision and let me try it. Don’t make me jump through crazy hoops. Just give me the prescription and let me get on with my life.

  11. Recognize the EMOTIONAL aspect of diabetes and, I don’t know, ask me if I’m ok emotionally! T1D has a HUGE emotional component to it. It’s stressful, time consuming, and can quickly lead to depression. Am I happy? Is my diabetes really interfering with my life in some capacity? Is diabetes interfering with my job? Patients are sometimes reluctant to bring these up to a doctor, so sometimes the doctor needs to initiate the conversation.