What do you need from your doctor and are you getting it?

There’s been a lot of talk on this site about good endos and bad. I know I’ve had a long string of bad endos and frankly my judgements are out on my current endo. I’m curious, if you’re not crazy about your endo, what do you want/need from him or her that you’re not getting? If you love your endo, what is it he/she is doing that makes you feel that way? This can include any doctor, nurse or educator who sees you for your diabetes. I’m on a crusade - with your help - to open up the conversation between doctors and patients to help those, who are willing to listen, better understand what patients with diabetes need and want. I’d love to hear from you. As a side note, I just interviewed Nicole Johnson who’s heading a project to improve chronic illness care called, “Bringing Science Home.” Really good info.

I almost don’t know where to start here. I was diagnosed in my 40s, before then I had some “ideal” about doctors and how they could help me. Since my diagnosis, my interactions with GPs and endos have been a seemingly endless string of dissappointments leading to my current situation where I “fired” my endo in December and am forced to find a new GP, essentially a collapse of my medical team. At this point, I am left making my own medical decisions, I started insulin on my own in direct defiance to my former endo who wanted to just keep “shopping” medications until something worked or I ended up in DKA. Oh, and I have serious “trust” issues.

Part of what I have had to realize is that over time I have become much more competent about diabetes, thus raising my expectations of what I demand from doctors and demanding that my practitioners participate in my self managed care. My doctors do not seem interested in that relationship, they have their own agenda unrelated to my needs or desires. So instead, I am left right now weighing whether to find some young naive resident who will be “compliant” with my requests for tests, prescriptions and care direction or whether I should spend more time searching for an endo who may have some level of competence, but probably won’t be a real part of the team.

Wow, you started insulin on your own! That’s the first time I’ve heard that. Most often I hear people love it when their endo has diabetes, maybe you could search for someone who fits that bill.

Well, if you have a nice glass of wine and a little time to waste, you can read some about my starting insulin and my endo. And I started insulin after nearly three years of asking for it, I didn’t make the decision lightly and I worked very hard to make sure I did it safely. Unfortunately, I had to do it on my own as my “team” let me down.

I have only been diagnosed for 2 months and have only been to one endocrinologist, but I already know that she is not right for me and a disappointment. I think after meeting with her a few times, the one thing I am clear on is that I need an endo who will actually listen to ME and MY situation and not group me into some category of diabetes and take it from there. I felt that in front of her I was not a healthy woman diagnosed at age 25 who needed help, but just a statistic. Furthermore, she didn’t believe that my initial stats at diagnoses (fasting blood sugar of 492, A1C of <14) to be a marker for type 1 or LADA. She tried to tell me to stop taking insulin! Find an endo who listens to YOUR story!

I want my endoc to work with me on MY goals and look at me as a unique person. I’ve asked mine for help figuring out insluin/carbs on my runs, and he handed me the most lame pre-meal/post meal chart I’ve seen in years…no room to even record carbs, or BG before/during/after a workout. He doesn’t download meter data or look at CGM graphs, and dosn’t want to see a more detailed spredsheet log. All of that is probably more the diabetes educator’s job, but since he doesn’t have one…sigh. Otherwise, he’s OK, doesn’t push me on anything, and stays on top of the appropriate lab work, etc. I waver between being OK with this since I tend to be pretty independent. But I also think I could use someone to help me out of the complacent zones I get into. I’m almost afraid to go to an endoc that would actually want to have input into my insulin dosing because I really don’t trust anyone else to know what is best for me on that front. But I also feel like it could be so much better to really feel like I had someone on my team whose input I could really trust. So I think maybe I need an endoc/educator/shrink combo ;). I’ll be interested to read everyone’s input on this.

Side note: My trust issues date back to a failure of another doc (not an endoc) to recognize that I had diabetes in spite of a fasting BG of 380, unexplained weight loss, etc. and another who failed to recognize that it was T1 because I was 27 at diagnosis. My body survived all that, but my blind trust in medical professionals did not.

Unfortunately GPs are only given one day on diabetes in med school, and then imagine all the new stuff there is to keep up with. And you make a good point that too many endos are turned on by the labs and numbers. It’s the educators who relate to the person and too many endos/docs don’t have 'em in their office.

I am a low glycator, and my previous endo let me go into a coma with an A1c of 10.7. ONLY 10.7. I almost died. My BGs had been running 400 and up for weeks, and I saw him a month before, and then 6 days before the coma, and he did nothing. Needless to say, he’s no longer my endo.
What I want an endo to understand is that I am an individual, and that my diabetes does not fit the textbook. When I was in the hospital, they were using Type 2 protocols, and then couldn’t figure out why my BGs wouldn’t come down. The CDE finally told them I was Type 1, in order to get them to use the Type 1 protocols, and then my BGs started coming down, but it took far longer to recover than it should have.
I have a new endo, who is Type 1 on a pump, but I haven’t seen him enough to know whether it’s going to be a good fit or not. I really hope so, but they don’t teach Type Weird in medical school, so I just don’t know.

What really makes me sad? That diabetes is such a common condition, with the CDC finding that there are 26M americans with it. Yet the medical system is broadly failing us. The front line, GPs and family practitioners are incompetent, getting only a day of education. In my opinion, knowing less than a veteran patient. And CDEs and RDs while often having more broad and practical knowledge about diabetes, are stuck providing primarily mandated (and flawed) education and have little ability to address medical needs. And the experts (endos), there were only 3000 of them in 2008 providing clinical treatment. That is over 8000 patients for each endo! There is a “crying” need for a diabetologist specialty, practioners who have specialized competency in diabetes, able to properly diagnose and treat the 80-90% of us, and someone who could wholistically deal with the spectrum of how diabetes impacts us. Perhaps a super CDE/RN/Physicians Assistant. But we don’t need 50 of them, for 26 million people, we need 50,000!!! (assuming 4 hours/year).

BSC, while I wholeheartedly agree with your sentiments, I think your stats are a bit off. According to The Journal of Clinical Endocrinology & Metabolism (http://jcem.endojournals.org/cgi/content/full/93/4/1164) “In 2006, according to the American Board of Internal Medicine (ABIM), there were 5341 board-certified endocrinologists in the United States (www.abim.org).” Of course 'tis sad and woefully problematic and will cause skyrocketing costs, both financial and in health and productivity, as we continue to amass diabetics with a dwindling supply of providers.

Riva, you are correct, I made a math error. Serves me right for having a degree in math, I can’t even subtract properly. The study I cited affirms your number, basically 5500 board certified endos, but 1500 of those endos are not involved in clinical practice, they do research and other stuff. So the right number should be 4000, not 3000. That means 6500 patients for every endo and each patient can get 18 minutes of attention from an endo each year.

I hang my head in shame and stumble off to my algebra class.

I went to my endo’s yesterday, and saw his APN nurse. I couldn’t tell how much she was listening to me, because she was buried in her computer. Which is going to be an increasing problem – on the one hand, it’s good to have computerized records, but on the other hand, one way we tell whether people are listening to us is by eye contact. She did seem to get the salient points, and gave me a copy of the information downloaded from the pump, but I asked 3 times for my lab report and never got it. She did give me a new prescription for lowered thyroid dose, and when I suggested (twice) that I might lower my basals by 0.1 because while fasting, my BG drifts down instead of holding steady, she finally agreed. So I have kind of mixed feeling about the whole thing.
On the point of better diabetes care, I would like to see more patient empowerment – peer mentors, who could help people, not by making medical decisions, but saying things like “have you considered asking your doctor about this?” or “That’s really common in diabetics, and will go away” or “Here are some books you could read to increase your understanding of what diabetes is” or “I had that too”, etc. just like we do on the internet. Just expand that kind of patient interaction to those who don’t have computers, and possibly have less education than we do. Really good diabetes care is self-managed – how do you give people the tools to do that?

A T1 here, and pretty new to it. My endo told me I should just shoot for a bg of around 179, he said that’s the best a T1 could ever realistically or safely (without going hypo) hope for (thank goodness I’ve since learned that’s bs). He also told me (actually have it in writing from him) if I’m ever below 80 to drink 4 oz of OJ. (Thank goodness I’ve learned–the hard way–that if I’m at 75 I can just eat a cracker, because 4 oz of OJ will send me soaring to 200+ in no time (as we all know, there’s a huge difference between a low of 30 and a low of 79).
My insurance just changed, so I’ll be seeing a new endo in two weeks, and feeling pretty apprehensive about it. At least I’m wiser now and will be prepared for any bs (thanks to self-education and TuD).
Its not black and white, its gray-scale. Endo’s need to understand that, and teach it too, especially to “newbys.”