How do you feel about your endo/doctor/diabetes specialist?

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I’m really curious: Does your endo, GP, diabetes nurse, whomever you interact with for your health care congratulate you when you’re doing well? Appreciate your efforts by telling you so or in some other fashion? Croon over your successes, like on your test results? It is very rare for me to come across someone (and I’ve interviewed 130 people with diabetes) who really likes their practitioner. Most of us feel our health care providers really don’t “get” what living with diabetes is like and spend our office visit addressing our illness but not us.

With a chronic illness like diabetes we all know support, encouragement and recognition of how tough this is is as necessary as doling out medicine. But most medical folk don’t seem to get this message going through medical school.

Outstandingly, three years ago my GP called me on the phone to give me my A1c result and remarked on my 5.9% value, “Riva, I don’t know how you did this or what you’re doing, but it’s great, great! Keep it up!” When I got off the phone I was flying. Not just because I liked my A1c result, but because that man in the white coat (whom I’ve been trained to please) on the other end of the phone was astonished by something I did superlatively, congratulated my effort, and admitted he didn’t know what incredible wisdom I had, but he was in awe. This recognition further fueled my gumption to keep up the good work.

Comparatively, the endo I’ve been seeing for the last three years, spends most of our visit glued to his computer screen as he’s entering test results and whatever I say. But his interaction is with his computer, not me. Frankly, I feel invisible. The last time I was in his office he pulled up someone else’s chart who shares the same last name and didn’t realize it until I told him a test result he was quoting from his screen for me was wrong. Then during our last encounter when I got a false positive on my potassium test, he aggressively instructed me to retake it and this could be dire. I did. His office did not call with my new test result. I had to call them four times over four days before he returned my call to give me the result. All was normal. Why didn’t they give me the result? Because office policy is if you’re doing fine, no one calls. Well, according to my first test result I wasn’t doing fine, so you’d think they’d think I’d like to know now that I’m not on a collision course. And, policy dictates patients don’t hear good new, only bad news? Sorry, doc. Not for me.

That was the straw that broke this camel’s back. I went shopping for a new endo and have my first appointment scheduled this month. In truth, I’m not all giddy after all the stories I’ve heard of discontent from other patients, but I know that somewhere out there, even in this fallow landscape of new york city, there must be a handful of good endos.

So, what’s your experience been? Like your doc, not like your doc? Hear good news or only bad? riva

By the way, since you’ve managed to find your way here I should tell you down the left hand side I have an rss feed to the blog on my web site. There I post thought-provoking, personal essays, about two a week. I’m going to attempt to post something here weekly, an in-the-moment, twitch, itch or authentic b_ _ _ _ (you get the idea)

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I personally love my endo. I have to haul myself from NYC to Queens to see him - and he’s nowhere near mass transit - but he’s kind, he listens to you, he’ll take phone calls if you have issues, etc.

(I wasn’t overly fond of his CDE, but I think that’s because by the time I sat down with her, I could have given medical school lectures on T1 treatment, and she was starting me off with the absolute basics, which, considering the bar exam was in 2 weeks, was not what I would call “useful.” Nice lady, but not helpful for me.)

3

I wrote this article for the JDRF:

Albert Einstein said that “the definition of insanity is doing the same thing over and over again and expecting different results.” Well, is your endocrinologist or educator insane? Does your professional offer you the same advice over and over on how you should lower your BG?

My previous Endo would say, “You have to start logging, so we can recognize trends”. Or sometimes, “no more late night snacking before bed.” How about the always helpful and informative, “Let’s cut down on the carbs to reduce variability in the amount of insulin you give yourself.”

I never walked out of that office with any groundbreaking insight, and from what I’ve learned from talking to many Type 1 diabetics, they haven’t either. The reason we don’t is simple: many of us Type 1ers don’t have the motivation to start logging consistently, or to refrain from eating a small snack before bed, or to just resist a handful of potato chips at your Labor Day barbeque.

The problem for many diabetic professionals is that instructing a patient to do X Y Z is different (and easier) than really getting into their psyche to make them want to do X Y Z. Unfortunately, getting into the psyche of the diabetic is the only thing that will work long term.

I know what you’re thinking: “So now you’re going to try to convince us that we should be logging, testing, and eating better because we’ll live longer, won’t go blind, won’t lose limbs, etc.?” Well, you’re wrong. That philosophy is boring and over-played and I’m sick of hearing it. Aren’t you?

Instead this industry as a whole should be focusing on making your life easier because the easier your life is the more likely you will manage your diabetes better. That was our thought process when making Glucose Buddy for the iPhone. Glucose Buddy is the most popular, free diabetes management App that provides a unique service for diabetics to make their lives easier. For many Type 1s, an electronic place to store their results and view them either on the phone or through their free online member page makes their lives easier. For others, viewing TV segments from dLife TV (which Glucose Buddy will offer by the end of the year) will make their lives easier. Yet for others, education programs like the one we’ll be offering in collaboration with a large meter manufacturer will help make your life easier.

You see, the problem is that some, not all, doctor and educators use the same lecturing approach for all their patients. This may work for a few people, but for others it’s totally ineffective. Just like there are visual learners, auditory learners, and hands-on learners, there are different types of Type 1 learners, as well. But unfortunately this kind of learning and motivating techniques are not well spread enough. How do I know this? Because if someone had mastered it, no one out there would have an A1C higher than 7.0.

You might still “yes” your doctor to death and forget about his advice the moment you leave the office. Don’t feel bad, most people are like you. However, you don’t have to wait for that motivator to come to you, after all, Glucose Buddy’s ultimate goal is to include something that will in one way or another motivate all diabetics.

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Matthew, I just saw your article in Diabetes Health magazine, which I also write for. Also, just had lunch with Robert Orringer who told me to look you up. I believe you’re a fellow New Yorker. riva

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I love my endocrinologist.

Despite having thousands of patients, she really knows me. I’ve seen her every 3 months for five years, and every time I come in, she’ll have some reference to something I’ve said or done before - like “I’ve been telling patients about that website (TuD) that you told me about” or “I’ve really been thinking about what you said last time regarding feeling alone” or “this isn’t the first time you’ve told me about binging on chocolate.” LOL. I love that about her. She’ll say “you know, last year, when you joined that gym, we did see a change in your A1c.” I don’t even get that kind of recognition of who I am from my family GP - whose son, coincidentally, was one of my private lessons students.

My endo also tells me that she learns from me. She put me on Apidra and Symlin when they came out because she trusted I would give her feedback. She asks for my input regarding the Navigator CGMS because I’ve been having such success with it. And she asks me what she could have done differently in our earlier days together when I seemed so much more frustrated with my care. She always comments on my lab results and when she released me for pre-conception, she personally called me to wish me luck and tell me I was going to be just fine. She’s also referred me to my OB, my opthalmologist, and my podiatrist - all of whom I love.

BUT that doesn’t mean every endo I’ve had is like her. And it doesn’t mean that I’ve always reciprocated a healthy, cooperative approach. I’ve had the white coat I couldn’t impress, I’ve had passive aggressive doctor/patient relationships, and I’ve also not known which questions to ask. I’ve fought with doctors regarding treatments, results, diet, logging, etc. And I think I’m STILL too argumentatitve with every CDE I meet. I’m not trying to put the blame on the patient though. I frequently got slapped with “non-compliant” when the real case was “lost and confused and compliant to the wrong instructions.”

I think I’m in the minority by having a doctor I trust explicitly and with whom I can really communicate though. I wish it for everyone.

6

i loveeeee my doctor, my nurse practitionor, pump specialist, and dietition!
my doctor is the biggest kid you will ever meet, and he has this big “diabetes connection adventure camp” organized for us every year, and its amazing! I lovee my nurse practitioner, i’m so close to everyone at my office because for the camp half of the staff come as consellors along with previous campers from when it was first began!

alot of times, my doctor will send me my A1c or blood test results or whatever, and he will write notes about my results on the bottom of it. one time it was “tremendous job carly! no, STUPENDOUS job!!!” and stuff like that.
:smiley: i love them all!

7

I like my diabetologist but it took a while to make the step from my family doctor to a specialist. I always had the feeling that I am the only one in charge and that this kind of tight control could be provided just by me. This is still true but my diabetologist is just pointing his fingers here and there and asks me about reasons for problems in my control. Without his input I would still use Actrapid and Protaphan (NPH) and I would still fight with many lows so I am thankful that I met him. As a doctor he is acknowledging that I am doing a good job and at the same time he is reviewing the diary for things that can be improved. I am entering all my data in my free project Glucosurfer.org. So my doc can instantly start to analyse the data. In front of the computer display we get into an open discussion about areas worth to address: carb factors, problems with lows in the night, repeated highs or BG variation within one day. So it is more a feeling of having a coach than a doctor. He gives me the feeling that a patient with good control is also a big motivation for him and his work. Sadly because he knows so many examples of diabetics not caring so much about themselfes. It is still encouraging and positive motivation is all we need. Don’t we?

8

I’m an endo shopper. My latest one I like, he spends time with me, doesn’t talk to me or at me, but we discuss my concerns. He’s supportive, esp. the last time when I took all 3 of my kids in with me. Now he “gets it”. I like his nursing staff and physician’s assistant too. The endos I’ve had in the passed have angered me because of crass comments they’ve made. I’d love an endo who is a type 1, this person would understand. In the end, though, I’m still my own doc. I change my basal rates, adjust my own boluses. Diabetes seems to be this type of disease for being your own doc.

I get a letter in the mail with my test results about a week after my appointment. I’d rather have a phone call, but in the big scheme of things, I can deal with the letter. At least this way I can file the letter away and refer to it when ever needed.

I think an endo is about as personal a doc as you can get other than an OB/GYN.

9

I have to say my endo really gets it. She has always listened to me and takes positive steps to help me manage my disease.

Having said that, I AM a pretty easy patient in many ways. I have hardly any complications (save a bit of neuropathy in my feet - unchanged for over two years!), and I only see her once a year since I am away from my “home” state. Even on these visits though, she quickly picks up on what needs to be addressed. On this last visit she looked at all my various numbers and said, “don’t obsess about the low frequency of your A1C tests.” You ARE in great control as evidenced by your lack of complications. Keep up the good work, check your feet everyday and I will see you next year."

Fair Winds in finding the endo that is right for you,
Mike

10

I want to thank you for your responses. It’s great to know many people like their endo. The common threads seem to be he/she listens, cares, is responsive, partners and coaches. Actually, I am going to a new endo this Wednesday afternoon and hoping I’ll be able to say the same nice things about her…

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So how did the meeting/interview go? Did she pass?

Fair Winds,
Mike