Talking with Doctors about Looping

Has anyone spoken with their Docs about Looping?

What resources did you provide them with? How did they respond to the idea? Much push back?

I have an appointment coming in a couple of weeks and I’m wary of even mentioning it. But, I should.

My Doc is a supporter of closed loop solutions - he likes the Medtronic one (which I won’t use). He also likes T:slim and would be fine with that. But, I am an Omnipod user. He had never heard of freeware systems until I spoke with him about them last appointment. I am uncertain about how he will respond but fear push back.

How did you have this conversation with your Doc?

You seem pretty good at holding your on here in these forums.
lol
Take some of that online attitude and bring it with you !!!
I like your attitude - use it. :slight_smile:

Perhaps start with a topic with your Doc that is unlikely to generate controversy. Talk about the work with Insulet is doing to integrate the Dexcom into their system.

Dash is the newest system from Insulet.
Horizon is the next system which is expected to be a hybrid closed loop.
Tidepool has said they will also be seeking FDA approval for a supported algorithm to run on the Horizon system or something like that - I don’t follow Insulet as closely as some others so may have it not exactly correct there.

Assuming those discussions go well then talk about how there is a current looping approach available for Omnipod that uses the “Loop” algorithm with a RileyLink device which is controlled from your iPhone. (Current Omnipods - not the Dash system). Perhaps discuss with the Doc that you are thinking about giving this a try to get an early preview of how looping would work with the Insulet systems.

How long of an appointment do you get? Do you have enough time to chat and get into things or is it a quickie? Seems quite a range of experiences people have with their Docs during appointments.

I have a new endo who is somewhat technologically hip and knows at least a little about looping. I’ve never had a specific “looping” appointment but we’ve talked about this during 3-month checkups.

She feels I would be very unhappy with looping. Because I would be looking at my numbers all the time and manually doing corrections rather than letting the loop do the corrections. Essentially I would be messing up the loop algorithms all the time with manual stuff rather than letting the loop do all its stuff automagically.

I think she bases the above statement about me, based on how stubborn I’ve been on accepting her detailed advice and instead choosing to do all my own details.

She feels that the loop can work well for folks who are willing to be hands-off and let the loop do all the work.

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@Tim12

Perhaps your doctor feels Looping control could not match your current non-looping BG control?

While I’m currently not looping, I suspect I’d be in the same camp as my most recent A1C was 4.6. My doctor called me and threatened that if I didn’t raise my A1C’s she’d contact authorities and have my driver’s licence suspended.

I now find myself intentionally running higher BG’s than I’m used to. So perhaps looping and targeting A1C’s that are at least 5 might be my best option now …

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He’s pretty good. He will take the time. I sent him a 60 page literature review that I wrote for school 2 semesters ago to prepare him for this. But, he had never heard of any of this before that.

@Tim12, My Doc has also mentioned these concerns to me. He says that diabetics are ‘control freaks,’ who can’t stop meddling with the algorithms and break stuff.

Holy ■■■■, @Jim_in_Calgary! 4.6? Wowzers! I have been advised not to run below 6.something. I’ve hit 5.8, and I know that I was unstable. I tend to run 6.2. They worry that low BG’s might cause a seizure due to my epilepsy, so they ask me to run a little higher just in case. I’m cool with that. I dont know what the typical a1c accompanying a closed loop system is. But, you raise an important point. I should look into that.

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Back in 2016, I had just moved to a new city and it took me five months to get an appointment with a well-known hospital affiliated diabetes clinic. In the meantime I started using the automated insulin dosing system, Loop.

On the day of my long awaited first endo appointment at a new clinic, a winter storm prevented my doctor from showing up. Instead the clinic offered for me to see the head of the clinic.

I played it with a simple explanation of my understanding of how the system works and how its helped me, especially when sleeping. To back up my claims, I pointed to the data that the clinic downloaded from my CGM. I also printed hard copies of my 14-day and 30-day Dexcom Clarity Ambulatory Glucose Profile (AGP) report.

I don’t remember my exact numbers but my glucose variability was low and my average BG was in the 100-110 mg/dL range. My time in range (65-140 mg/dL or 3.6-7.8 mmol/L) was more than 80% and my time low around 3%. Over 2/3 of my “hypoglycemia” was in the upper end of the low range, what I would call the “alert range.”

The doctor listened carefully and asked appropriate questions. He took his time looking over various Dexcom reports on his screen. To his credit, he did something I’ve rarely experienced with endos: he didn’t feel obliged to give me the standard hypo warning.

My point of care A1c came in at 6.0%. I now realize, due to iron deficient anemia, my actual glucose exposure was likely equivalent to a 5.5% A1c. In any case, I was pleased that he didn’t feel the need to over-react to a lowish A1c alone to warn me about dangerous hypoglycemia.

I think I was likely the first patient he had seen in clinic using an automated do-it-yourself insulin dosing system. He measured his comments carefully and maintained a neutral position with regard to DIY Loop. He neither complimented nor criticized. I could tell from his body language and questions, however, the he was impressed with the level of glucose control I got from this new technology.

I think the key to keeping skeptical doctors off of your back and gaining their support is to use data to show that your better control from looping does not come at the increased risk of severe hypoglycemia, < 54 mg/dL or 3.0 mmol/L. I’ve needed to remind subsequent doctors at this clinic that I don’t consider “alert value” hypoglycemia (55-70 mg/dL or 3.1-3.9 mmol/L) with the same gravity as severe hypoglycemia. I’ll often treat alert hypoglycemia with one glucose tab or one ounce of juice.

I also made it clear that through extensive personal experience and observation, I knew that my threshold of physical hypoglycemia symptoms started at 65 mg/dL (3.6), not the standard 70 mg/dL (3.9) that most clinics use. I pointed out that gluco-normals spend a good deal of time in the 55-65 mg/dL (3.1-3.6) range, particularly during the period right before waking up in the morning. I much prefer to compare my glucose control to healthy non-diabetics, not some arbitrary standard decided by professional associations.

With my recent dive into educating myself about hypothyroidism, I lost some respect for my diabetes docs. They seem much more driven by rote and inflexible adherence to standards of care. My clinic, however, does an excellent job of supporting my continuing need for a long list of diabetes supplies and that is no small thing.

In summary, I would approach the doctor in a matter-of-fact manner and bring lots of data to support your case. This is a test for your doctor. If you learn that this provider over-reacts and fails to consider your case in a individual fashion, then you’ll know how to handle your communication going forward. If the doc freaks out about using a system not certified by the FDA, then I don’t think there’s much benefit in arguing. Smiling and nodding can be effective in this situation.

If the doctor is supportive and open to new ideas, then I would consider that a plus. S/he should treat you like an individual case, listen to your questions, and give appropriate answers.

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Thanks Terry4, that’s super helpful information. Its great, well thought out summary of experience. I very much appreciate it. I’m sooooo scared he will say no.

My Doc is a soft-spoken hard-■■■ from Pittsburgh. He simply may not go for this, but he may negotiate. He will be polite, but this may not jive with his professional opinion. It may become a battle of wills between two super polite, tell it like it is, individuals who politely will not give an inch on this. I anticipate a deadlock. I’ll know more and report back in 2 weeks.

So true! If you look up Control Freak in your Funk and Wagnalls, you’ll see my picture right there!

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Are you experiencing many severe lows, < 3.0 (54)? I should know this but my memory fails me, do you use a CGM? If you had data to support the fact that you can enjoy a normal A1c without seriously compromising your safety then the doctor would need to at least acknowledge that fact.

You could also assert that a low standard deviation in a CGM data set enables a lower glucose average without increasing hypo risk. Maybe using a CGM for a month before the next appointment would support your case.

If you fire this doc, are you left with unacceptable choices?

@Terry4 I’ve used a CGM since 2015, and have plenty of Clarity reports to support my BG stability. This particular doctor (what we call family doctor / general practitioner (GP) in Canada) has only enough knowledge to be dangerous and is highly opinionated (biased against any diabetic having an A1C of less than 6). Her eyes glaze over when I show her evidence that her concerns are unjustified.

Fortunately it seems there finally are some choices for switching family doctors, and I plan on making the switch shortly.

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I do not loop but I must say you need to do what is best for you. It is your treatment plan not his and you both should be looking for the best system for your situation. I would think a doctor would be very willing to discuss a treatment plan that might help your situation.
I don’t know how up to date your doctor is but I have found that those into the technology advancements tend to favor trying new things.
I have been very blessed and never been told no about anything I have brought up. In fact everything I have asked about we talked about pros and cons and implemented everything although we did talk about type 2 meds and my first choice and his was different so we talked it through and went with his choice, thankfully. It works very well for me.
So push back if he is not on your page. And the reality here, he really doesn’t need to know. It’s not like you let him play with your pump. He should be sending prescriptions for supplies and reviewing reports, maybe?
I mean my doctor pulls my pump reports so he has current profile numbers and I give him my CGM reports.
You got this! Just tell him what you need and why. He does work for you!

We seem to have an inherent need to not want to disagree or talk back to our doctors, I don’t seem to have that problem nowadays but I think I got over it when I started going to lectures and knowing a few. They are just people with different views. I don’t have them on pedastals anymore and just view them as a source of usually better knowledge about health questions and with the ability to help.

Keep in mind they all have a view as to what is acceptable to agree with what you are doing so while I speak up I also know it it’s better not to say a word or elaborate sometimes!

@Jim_in_Calgary doctors that threaten to get their way, run don’t walk to a different internist if no other gp available.

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This came up on a FB group recently. In addition to @Terry4’s well thought out comments, which I would summarize as “Look at the data; all else is irrelevant”, I think the bottom line is this:

Your endo prescribes your insulin, pump and CGM supplies, nothing you are doing with looping counteracts your need for those supplies.

If your endo supports your looping decision, then that makes your relationship more open and supports the expert advisor model of clinical support that you should receive.

If your endo doesn’t support your looping decision, then don’t mention it. Provide the minimum amount of data you need to have the scripts renewed and move on.

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Maybe that’s the best way to go about it.

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To the degree that you might want to keep the devil you know …

I might approach your doctor with a question. Why aren’t you comfortable with having a PWD who can maintain an A1C of 4.6?

If her answer is that a PWD at that level can’t possibly avoid dangerous and extremely low BGs, then ask if she would look at the data that shows you can and do avoid those type of lows.

If the answer is, “Well Jim, it’s not the lows, because I can see you manage quite well. It’s because of … (some other factors)” Then perhaps you have some more data to consider.

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I wonder if endos may be concerned with liability, if they directly or indirectly support non FDA approved treatment plan.

If I brought it up with my endo, it would be my curiosity as to his knowledge of looping. But would not seek his buy in.

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I can sort of see this - except if I want an endo to be literate and able to read and judge facts independently … otherwise we can just have automatons