Talking with your doctor – do you keep secrets?

Community
21

When it comes to daibetes, I'm a type A person. I aggressively follow and treat my BGs, sometimes with less than orthodox tactics. I agree with you when you say that a doctor's perception of you forms the basis of their recommendations. Unfortunately, with a 15 minutes 4 times a year exposure, my doctor has no idea who I am.

I'm certain that some endos in my past simply concluded that I was obsessive, testing 15+ times per day. In other words, obsessive in an unhealthy way. Instead of trying to channel my diabetes vigilance into more productive tactics, they simply rolled their eyes (metaphorically) and moved on to the next patient.

Doctors are hypo-phobic and don't use readily available data to discern between a BG roller-coaster patient and the one who has a less variable BG. Why don't they monitor standard deviation or any other variability measure? Don't they follow current diabetes studies and regularly incorporate that knowledge into their day-to-day practice. Instead, many of them simply choose to reflexively warn about hypos when they see an A1c south of 6.5%. I don't respect that.

22

If I correct my pump using the carb input it has no idea I have changed the bolus and tracks IOB as normal and there is no record of a bunch of manual insulin which impacts the I:C data in CareLink. I correct my food according to experience and enter the total carb count into the bolus wizard and there can be a considerable difference, I'm still looking for my pump to add correction insulin and track IOB based on the pumps program which is impossible to calculate manually the MiniMed pump calculates IOB very close to how the body actually burns off Novolog or Humalog.

23

Mike - I agree that honesty is the best policy with your doctor. Missing information hampers the doctor's ability to help you.That being said, the current practice of relatively short visits do not allow time for the fuller truth to emerge.

I bring in so much data into my endo appointments, it would take an exceptional person to make any useful comprehensive conclusions. Between the CGM, pump, and meter data, there is a bucketload of data. What clinicians need is a visual summary or dashboard to focus all the data.

24

I also override my pump's suggestions. Not all the time, but often enough. Pumps aren't smart enough, yet.

25

At my last endo appointment the diabetes educator was awed by my 88% of my CGM data being "in-range." I asked her what the in-range targets were and she replied, "80-180." I don't think an 80-180 target helps for many diabetics. Low expectations produce poor results.

Good luck with the new doc. It may take a few appointments for her to understand your unconventional, yet totally rationally way of managing your BGs.

26

Funny you say that, I visited my endo two weeks ago and presented him a document labelled "Dashboard." It took me a weekend to prepare in Excel. It showed the standard trend stuff but also sparklines showing what I thought was gluconeogenesis and therefore split my Lantus and increased it slightly. It also showed the data where I recalibrated my ISF (4 repeats). He laughed saying it was the first time a patient walked in with a dashboard. He also said it was very productive but he didn't think more than 1:100 T1s could/would do it and no T2s would be interested.

BTW I went to testing a minimum of 10 times daily in April and my A1c dropped from 6.6 to 6.0 (tested last week). If that's obsessive, I like it.

27

I hear you, Terry.

In my case, the doctor recognizes that I am the one who has to manage the disease 24X7, AND I have a good grasp of what to do. Therefore, we focus on my issues. The data is available, if/when needed.

I will look at your link later, thanks for putting it up. Hope it can be used by PWDs, too.

28

Perhaps if endos encouraged some "best practices" they would see more of the type of behavior we share. To me they seem beat up and demoralized by their inability to make a difference.

What they really need is a sabbatical, an attitude readjustment, and a fresh way to reframe their practice. I think that patients like us are more than 1 in a 100. Many like us choose to "fly under the radar" with regard to their doctors and their doctors' advice.

29

that's what I did last time too - a truckload of data from cgm, meter, etc..and my endo just got overwhelmed. I was like, "Well, this is the info I have..what do YOU need then." i really dislike the 'you're testing too much, only test 4 times a day.' Huh? how on earth would anyone achieve anything close to 6% A1C (which some endos think is too low, that bothers me too) with only testing 4 x's per day. I could test 4 x's in an hour if I'm having a major hypo or arrow, double arrow down on CGM. I understand their concern(s) about hypos, but...we're dependent on insulin, we're not impervious to mistakes (if that's what it's called), often times none of this is linear. At this point, I just feel like if they can't handle the stress or the ups and downs of type 1 diabetes (I mean, we're the ones who live this every day, not THEM) and can't collaberate or refrain from 'blaming the patient' then this is not their correct field or specialty in medicine. If we hire them, it's their job to try and partner with us and help, isn't it?

30

so true. half the time I can't figure out if these endos want to micro-manage me or just throw me out there to figure this out on my own, autonomously, ya know.

31

It sounds like you have a workable understanding with your doc. I've been in doctor/patient relationships like that. The doctor supports my management but usually doesn't bring anything fresh or innovative to the table. I guess the attitude is, "If it works, don't fix it!"

Unfortunately, the link is just a pdf summary. I suspect that this was a poster at the recent ADA Scientific Sessions. I wish the Ambulatory Glucose Profile would be released as a tool for us to use. If I knew more about Excel programming, I think it could be recreated. I challenge a more Excel-savvy member of this community to work on this project. I'd love to collaborate.

I've manually produced a crude approximation but it takes me hours of moving my downloaded CGM data around to get some value out of it. The study authors, I'm sure, have automated the data handling to preclude the tedious manual data handling that took the wind out of my sails! I would use it, if they released it.

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Here's an easier to read link on the actual study that gave rise to the poster. I've cited this study here before. The first link is a large format pdf that is awkward to manipulate in order to read.

33

Thanks, that is a fascinating read, and not just because of the concept of standardized reporting, but because of the insights provided regarding glucose variability and patient "satisfaction" with more intensive therapy.

34

What an sightful read. No, I am not honest about everything about my diabetes with my doc or my Diabetic Educator, Although I do have a better relationship with the CDE than my PA. I think the main reason is that old one of time constraints. When I get an e-mail reminder from the CDE it shows I have a 60 - 90 minute appt..,,,when the note comes from the PA it's a 15 minute appt, Sorry, we can't go over my labs, my questions and hers in 15 minutes, I have asked for a longer appt, even come later in the day,,,,when she wants to go home,....Now my PA spends extra time, but there never seems to be enough to get my answers given, nor hers. It's very frustrating, We are into our second year of our relationship and she still didn't know that I took a Blood pressure medication for my migranes 10 years ago and still take them for Hi bp....She didn't know that I had started my weight loss at 252 and kept pushing for more weight lost. She listens, I think, but not always. We do have a computer e-mail system to her, where I can write questions, but even that is limited to 240 characters. Many years ago I remember my mother having this same problem when talking to our family doc, so one day she positioned herself in front of the door and wouldn't budge away, until she got some answers from him, I hate to think that I will have to do the same, but I will, if nothing else works, I'd love to hear what others do to get that time,

As for honesty, if I were sure that I wouldn't get the 10th degree and sermon about what I put in my mouth (being a former fat person, I'm hyper sensitive to that speech) I would definitely be more honest with her. I don't want to "play" games with her about my diabetes, but first, I know more than she does about diabetes, thus the need for a CDE; and second, some of my questions are of the emotional nature rather than medical, I already have PtSD, bpd, and severe-chronic depression....I need answers that don't take only 30 seconds. I see a therp for those answers. AND as far as that goes, I get answers from my support group and here better than a doc or pa,

35

An endo that thinks testing more than 4 or 5 times per day as too much indicates such a fundamental different set of values from mine that I don't see how to bridge that gap. It says to me, "I don't understand T1D. I don't get your life. Your values seem bizarre!"

Endos that reflexively go hypophobic when an A1c descends to near 6.0%, without understanding BG variability, can't be effective with patients like me. A chasm exists between educated and motivated diabetics and the average endo. Fifteen minutes four times per year isn't going to bridge that gap. I can't fix the relationship; I can only do my best to keep my health.

With the explosion in the number of diabetics and the shortage of doctors, perhaps our most effective plan is to educate ourselves and try to find our own answers. Docs can write the Rx's and monitor our labs. Maybe that's all we should realistically expect.

36

Knowing more about diabetes than a credentialed professional can get awkward. I know the breadth of their medical knowledge exceeds mine but they can't even begin to approach the depth of diabetes knowledge that accumulates from 24/7/365 exposure. The smart practitioners concede that point and really listen to what you have to say.

Understanding the emotional face of diabetes is a tough one. It takes a certain depth of empathy that is not present in all humans, even doctors.

Honesty and Truth cover a lot of territory. It's hard to achieve in a marriage, much less in a 15 minutes, 4 times per year relationship.

37

Terry, you are oh so right, achieving that relationship is very hard to do. My last example is my arthritic knees, I have two blown kneecaps, my PA had no knowledge of this until my ortho sent her (at my request) progress notes, Prior to that she was throwing fits about cortison in jections and ibrophfen use. Now she gets it, I had written that on the sheet when I transferred to her, but she must not have listened to it, Yes, I know I am not an MD, but she is not a diabetic. What I need her to understand is that I don't just walk into an appt without knowledge in my head and hand. I may not know the medical terms or lesser of evils of some ideas, but we are in this together, I call it my medical health team, and she is my quarter back. She directs the team. Of this she can relate...if not then she is NOT the best person for me. She knows NOTHING of my last 20 years in therapy, nor what brought me to that point, It's important to my health but not necessarily to her 15 min appointment, How would you approach her on this? I do really want to know,

38

I don't know. Every situation and personality are different. Philosophically, I call the shots on my "medical team." No one else has skin in the game.

I will trust more about what a doctor knows if they have a good grasp of what they don't know. I don't need a superman, just an astute practitioner willing to calmly listen.

39

I would approach it in two(?) steps. Send an agenda of what YOU want to accomplish in the 15 minutes on the 240 character email (1 or more emails) and then bring two printed copies with you to your appointment.

She may be the team quarterback, but you are the team owner!

40

This looks like a good article.

I wish my endo team had email and had my test/bg records etc. online for me to access and someone to review. This is 2013 after all. I would like more interaction about bg records/control. Last time I asked him about this so he did spend a little time looking at one low I had and discovered that I had stacked insulin without realizing it but it was limited to that event really. I do bring a list of things I want to discuss each visit. He is pretty good about listening to them but obviously the time is always limited. He also asks what issues I want to discuss and how I am etc. I don't keep secrets. Last time I told him I felt depressed and very limited in what I can do with D because my bg seems to spike each time I do something different where I have to drive a longer distance- he said to just let it spike and let it spike after meals also which I don't want to do. A spike can often end up in a low and then all your attention is focused on all of that and not what you're trying to do at that time. He also seemed less interested in research participation last time- I asked about this again and he just said taking a psoriasis drug was not something to do. The previous visit he mentioned he was going to put me on a list for some research they were doing but that he thought my a1c was too good maybe. He never mentioned that again. I think they think because my a1c is good that I don't need as much help but I feel it is also a time issue. When my insulin froze, possibly, 4 weeks ago, I called the office and they said to call the manufacturer because they weren't sure if it would be ok- i guess that makes sense but I thought it was a little odd. They said they would write a letter if I needed one to have a refill and insurance wouldn't pay etc. so they are pretty good about that sort of thing.