What would you want your doc to know?

Treatment
#1

Hi fellow TuD’ers. I have an opportunity to do some teaching for primary care physicians and endocrinologists in a community hospital near where I live. The teaching will focus on diabetes self management, but more importantly, what it’s like to live with diabetes and all of its ups and downs. I’d like them to understand diabetes from our perspective. And I’d like to represent our collective experiences if I can. :slight_smile:

They want to know more about what they can do to be helpful. I think part of where to start is teaching them what it’s like to be in our shoes. Here’s an opportunity for you/us to provide some candid and constructive feedback. Would LOVE your input. :slight_smile:

So my question is: what’s one thing you’d really like your doc or team to know about living with diabetes and what facilitates/creates barriers to “better management” on a day to day basis?

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#2

The best endos I’ve had have both been diabetics themselves. Hands down. They are so much more informed, it’s great for the patient. All told, over the years, I have been to 8 specialists. Like I said, the two that are diabetics have the most knowledge. Trying to teach “just” an endo to understand is like trying to teach non diabetics at Medtronic tech support, what it is like to use one of their pumps to it’s fullest. The techs who are wearing a pump for real, understand so much more about the nuances.

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#3

True. All of that. and I agree. my favorite nurse educators have had diabetes themselves, too, and those are the only people with whom I felt total confidence (to get what I needed by way of info and empathy and understanding) as well as total trust (to give the “whole story” about how I was struggling when I was struggling, prob because I knew they’d “get” it). The trouble, of course, is that there are super well intentioned physicians and health professionals who don’t have diabetes but who really want to be helpful. and i think they don’t realize sometimes when their method or delivery is unhelpful to us. I agree 100% that walking the similar miles in similar shoes can help a ton with empathy.

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#4

I think that one big thing doctors don’t understand about diabetes of any kind is that it is a chronic condition that patients live with 24/7/365 forever. The doctor only sees the patient for a 15 minute appointment maybe every three months for an entire hour all year. Yet the patient has to live all year making thousands and thousands of decisions about self management. Doctors need revisit their relationship with patients, they must understand that the patient is at the center of decisions and their job is to support the patient in that role not to give commandments and demand compliance. I really, really hate that word compliance.

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#5

I think all of us here know that management of this disease is essentially up to us alone. I get a little irritated when I hear about patients not adjusting their diabetic medication dosages until they wait to hear back from the doctor. Those patients aren’t going to fare well if they have to wait hours or days to make ANY change to their medication dosages. If someone were senile, of course they need help, but some patients just won’t learn ANYTHING about how to manage their diabetes. To me, that’s like slow suicide.

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#6

Eating and nutrition play a huge role in blood sugar numbers and blood glucose variability we experience. I want doctors to place a much larger emphasis on nutrition in their professional ongoing education.

They seem to know little about how carbohydrates drive post meal blood sugar. Their paucity of nutrition knowledge appears to be deliberate. They seemingly relegate this body of knowledge to dietitians. It’s further tragedy that most dietitians and their professional association do not appreciate how eating excessive carbs makes good control nearly impossible and degrades our quality of life.

Doctors, as well as dietitians, often adopt the philosophy of “carb-up, shoot-up.” They like to prescribe medications and insulin and then mistakenly think that properly counting carbs and calculating the perfect medication/insulin dose is a simple exercise in diabetes math.

They also appear to believe that we can do this math with consistently good results. When we don’t get good results, they point to our basal rates, insulin-to-carb ratios and other metrics as the reason for a dosing failure. They appear to have no realistic sense of the casino-dosing that we do every day. In the end, many docs attribute our control problems as “non-compliance.” That, to me, indicates intellectual laziness.

They do not appreciate, or simply dismiss, Dr. Bernstein’s law of small numbers. This law simply says that fewer carbs leads to less insulin and smaller dosing errors.

In short, I want doctors to give nutrition study the central place it deserves in their professional acquisition of knowledge. Doctors’ deliberate ignorance of nutrition is the “elephant in the room” when they want to engage with patients about diabetes.

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#7

I’d really like my doctor (internist) to know that having a good a1C is not the same thing as having reasonable control on a day-to-day basis. After all, you can get a “good” number with a lot of lows and a lot of highs during the measurement period. :stuck_out_tongue_winking_eye:

I was put on Humalog on a sliding scale when I got out of hospital. That got my numbers down reasonably fast but did not help with spiking at all. My doc was happy with my progress but I wasn’t!! Only after I read Think Like a Pancreas did I learn why I was having spikes and what I needed to do to reduce them.

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#8

Well said, Brian. The world of medical diabetes care is changing slowly and the rhetoric of “patient-centered” care outpaces the actuality. As you stated, we live with diabetes 8760 hours each year and only spend a few hours at most with our doctors. Many doctors fail to see the expertise that we gain as diabetics, especially those that are paying close attention to our blood glucose,

I feel like I have equivalent knowledge of a post-doctoral academic credential. Yet many doctors simply see me as just another patient in the mind-numbing blur of today’s 20-patients per day clinical environment. For a while I expected my doctor to take more of an interest in the details of my success but perhaps she doesn’t have time for that.

Allocating diabetes treatment failures to the diabetic is wrong-headed, shortsighted, and prevents digging to the ultimate understanding of where the seed of the real problem resides.

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#9

I agree, CatLady. The A1c number is not a very good indicator of overall control. It’s why doctors freak-out when they see an A1c below 6.0%. They automatically assume the point you make. An A1c is simply an average and it can and often does hide significant out-of-range glucose excursions – but not always!

I read in the medical literature more and more reference and respect for the time-in-range, or TIR number. This is my number one statistic that I follow to quickly analyze my overall control. I consider the A1c number as fifth in five metrics I follow. My ranking: time in range, time low, standard deviation (a variability measure), average blood glucose, and lastly A1c.

Another weakness of A1c is that it assumes a certain specific longevity to red blood cell life. If your red blood cells live longer, then your A1c falsely skews higher. If your red blood cells die earlier, then your A1c number displays inaccurately lower.

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#10

I think my inability to discuss diet with my doctor, CDE or any other health professional is the main problem. Saying Low Carb is like waving a red flag to a bull. There is no attempt made to understand what I mean by low carb, I am just told not to eat like it. I agree there is no time in a dr. surgery to discuss this subject, but I wish doctors would admit that carbs impact on a diabetic’s life and try to understand that food reacts differently on all of us.

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#11

It’s too bad that doctors don’t know more about the value of carb limits to treat diabetes. They perhaps don’t even realize that prior to 1921, limiting carbs was the only viable treatment for diabetes. Doctors now prescribe “medicine” that require us to eat enough carbs to maintain blood sugar balance. In many ways, diabetes medicines drive the need to eat.

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#12

@phoenixbound and @Tziporah I guess I’m odd-person out again… The one health team member I’ve had who IS diabetic herself is my PCP’s nurse – and she gave me some of the WORST advice I’ve gotten from anyone…

I’ve had two endos, neither of which have diabetes. The first one was younger and less experienced than the second. Each has pluses and minuses. The younger one dealt better with insurance companies than the older one; however the older doc “gets it” that there is no Once-Size-fits-all treatment for diabetes.

I do agree that docs (including BOTH my endos) need to understand that A1c is not the only indicator of good or bad control. There is a lot more that has to be considered - and much of that on a patient-by-patient basis. My last two A1c numbers were 4.9 and 5.0. The 4.9 was with as many as 2-3 hypos per DAY, as low as 40, while the 5.0 was achieved with less than 4 lows (no lower than 55) per month. (And yeah, I want to get rid of those lows, too - they were correction-calculation errors on my part.)

It is important for docs to treat the WHOLE patient and to individualize treatment. And it is just as important to empower the patient - when possible - to be the primary “manager” of their own care. Provide the tools and guidance and let the patient manage the details.

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#13

If they are not diabetic themselves then it is very difficult for them to understand what it is like to live it, no matter how much they know scientifically about diabetes.

I would suggest they try to remember that their patients, obviously, do not just have diabetes when they are in the doctor’s office. This is something we have to live with and manage every second of every day. Controlling diabetes is not just numbers, food, and medicine, it has an impact on every tiny little part of life. And every tiny little part of our lives has an impact on our diabetes management.

To the doctors it’s all numbers, studies, and treatments. To us it is our whole entire life. We don’t get to go home and not think about it again until the next visit. No, it goes home with us, we can’t escape it, and every little thing we do tips the balance one way or another. We can not be perfect all the time, no matter how hard we try.

So, long story short (too late), be as understanding and compassionate as possible while doing what you need to do on your end to help us live with diabetes.

*On a side note. I have seen more than a few primary physicians who knew way too little about type 1. They know a lot about type 2, but always seem to want to treat type 1 the same way. It blows me away how little they understand about the large difference between treatments (especially how often BG should be tested and how quickly and drastically BG can fluctuate with type 1’s). And also how little they know about treatment options. Many of the primary doctors I’ve seen in recent years are still wanting to prescribe Novolin N and R, and have no idea what a CGM is!

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#14

I would like the Endo to get to know the person a little. Lifestyle, what changes they feel they can or can not make. Perhaps it is just not in me to handle a low carb diet. OK, then work with me on exercise or something else. The endo can’t just prescribe a behavior without knowing whether it can be done. For example, maybe they are a caregiver and carry a double or trlple load at home. What modifications are needed?
Most important, work with the person as an equal team member and get on the same page with goals, treatments, etc. Each may have to compromise to work together.
Best wishes on the talk!

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#15

Way back in the day when I was first diagnosed, my Endo had a young Diabetic son, a few years younger than myself. I think she saw me as “her son in a few years” and treated me very well, to the point I was crushed when she left the practice after my first 5 years of being diabetic (from 13 to 18 yrs old). I think she cried when she saw how disappointed I was. She certainly had a different view and understood almost any question/solution I could present. Have not really had an Endo since that had that perspective.

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#16

@Terry4

:fearful: and not very viable at that :fearful:

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#17

My best endo always saw me as a WHOLE, and even admonished me to focus less on A1C. She sat down with me and went through all my bloodwork and all the things I did on a regular basis (testing, correcting, exercising, staying engaged mentally). She pointed out that every physical measure was nearly perfect except an A1C in the low 6s, therefore I should stay focused on living normally.

#18

What is wrong with an A1c in the low 6’s for a diabetic??

#19

Sorry, I made this without giving you the context. I had started out the appointment by saying I wanted to work on an A1C below 6. Her immediate reply was NOT concern about too many lows, but that A1C is an imperfect, blunt, tool.

We then had a more lengthy discussion where she unveiled her WHOLE person view of me.

#20

Back to the original post (sorry, I digressed).

I wish my current doctor would understand that even though I am well-controlled and managing things better than 95+% of the patients seen, I have my own set of goals that I want to achieve. IOW, don’t just look at a good A1C, good BP, cholesterol, etc, and say, “You’re good to go, NEXT!”