So, I got my 3 month lab results after starting Loop. I began July 20th.
Should I continue? Do you think that I will learn how to operate the system more effectively? Or, am I just better off going back to how I operated before?
Sometimes I stay on tech far too long trying to figure out how to make it work for me.
Sometimes that has been unrealistic. I’m OK with worse control if that helps provide them with data. Its not a terrible difference.
I knew that I was running higher. But, I didn’t expect this much difference. Its almost 7. I haven’t run a 7 since I was on syringe insulin.
What does your gut tell you? You guys have lots of experience with different tech.
Are you constantly having to deal with the new system, or are you more hands off than before?
I think that having less mental stress and work involved is worth a LOT!
That being said, a lot of these loop systems is finding out what works best. And will take fine tuning. I think that most people running closed loop systems benefit from the more hands off (once you figure it out,) that is worth the initial effort involved.
I don’t think I’m necessarily doing less work. Its that the type of work that I’m doing is different than before. I’m not sure. That’s a good question.
I think that when something goes wrong, I have less of an established protocol to fix it. So, there is kinda more mental labor involved - trying to troubleshoot problems.
I would probably give it 3 more months if you have a positive attitude about it. I got my first CGM in February and my A1c was about like yours. My last one was better and my time in range has improved.
Well, my A1C went down quite a bit. But yes, it definitely has some work involved. I’m still tweaking here and there and you definitely have t have accurate carb counts and ratios set. With the PDM, it wasn’t as critical and once you learned your favorite meals, you just bolused on auto pilot. But I love the app itself and how tight of control I can set it for and that I can control my insulin from a phone vs dedicated pdm or other device.
Yea, I find the carb counting kinda tough. I dont really carb count. I just remember how much insulin a meal is. I am delivering a lot less meal bolus and have a lot lower post pranials.
I’m not sure what accounts for the higher a1c, except that I have a lot of communication failures that prevent loop from operating and I haven’t been able to correct.
I had a hardware failure in my RL, but have recently started a new RL, so maybe things will improve.
I still don’t have much loop functionality overnight. I think that blankets prevent BT comm because it goes down predictably at night. Comm goes down for 6 hours. Then, comes back up when I get up in the morning. I also get pretty unreliable data comm outta the Dexcom G6 app.
I think the new functionality will help me deliver correction more easily.
Sorry to hear about the data drop outs. I myself put my Riley Link on the charging cable on my nightstand right next to me. I sleep with a sheet and a quilt with the Dexcom and the Omnipod on my stomach and never have drop outs at night. Sometimes I do during the day, but not very often. I use an iPhone SE that also charges on the nightstand at night. It has the latest build of Apple OS but not that new beta being bantered around. I’m also on dev branch now and love it. I was on JoJo Beeps fr the longest time.
Thats interesting. What do you think causes dropouts during the day?
Yeah, I’m plugged in to the charger. The stuff is within 3 feet of me. I sleep on the floor (like an animal) right next to it.
The first issue that was solved was bad soldering in the RL. Didn’t find that until the RL died recently. Its been brought back to life. But, comm failures are still occurring.
So, my next suspicion is that internet is dropping out overnight. Every time it does that, the Dexcom app throws an error that registers in the Loop app. I think its the ShareError 0 that has been plaguing me all summer during thunderstorms. I thought that would end now that its winter. But, the internet is more flaky than ever. When that shareError gets thrown, Loop doesn’t get BG data and shuts down. I think they have done some work on resolving this. Its not as bad as it used to be because it will resolve on its own sometimes. But, it is still causing trouble.
Now that I say it out loud, none of this really accounts for the higher a1c. I don’t understand whats going on there, but it helps to talk through it. Thanks guys. It helps clarify my thinking.
Maybe the difference in a1c isn’t even really significant if I’m spending more time in range. I get significant improvement in time in range even running open loop. That’s because most of my improvements have come from better performing meal bolus, not basal adjustments (those are minor because my basals were always pretty solid). The meal data is exceptional.
I probably have less finely tuned basals now than I used to, but the automation seems to overcome that just fine.
When your bg is low, less glucose will attach to your red blood cells which can result in a lower A1c. Even if you spent the same amount of time high but reduced your time spent low, your A1c would increase because less time low= more glycation.
Is there a chance that your A1c has increased because you’ve spent less time low, but you’re actually in a healthier range more often? If so, then you’re much better off trying to refine things on Loop (e.g. lowering your avg bg without increasing time spent low) than going back to what you were doing before.
Are your A1c’s point-of-service medical office fingerstick A1c’s or are they lab A1c’s? A1c measurements are not 100% accurate or 100% precise. See here for accuracy versus precision definitions.
Did Dexcom Clarity reports, 14, 30 and 90-day reports, corroborate the two A1c’s that you shared?
I agree with others about looking at your Clarity reports. My endo is now paying more attention to TIR with A1c as a secondary indicator. By analogy with temperature, he likes to say “You could have your head in the fire and your feet in the ice but your average temperature is still OK”. But you also have to consider what range you’re using. For the same BG data set, in most circumstances, a wider range results in higher TIR, and vice versa.
Yes, katers87. There might be pretty significant decrease in time spent low. I used to skim along pretty happily at 65 during the day and the night. That was almost certainly skewing the a1c lower (pre-loop) because I would do that for hours at a time.
Time spent in range increased from about 50% pre-loop to 70% post-loop.
Your asking a good question, Terry4. But, I’m not sure that I know the answer.
In the past year or two, all of my a1c’s at the clinic were finger sticks (not blood draw). They were all 6.1.
The blood that I sent to Loop for an a1c was also a finger stick. I suspect that Jaeb might have had some trouble with their samples (or they didn’t want it to freeze in the mail because its winter, now) because the lab was mailed to the University of Minnesota, not to Florida.
I have never used Clarity reports. Maybe that’s a problem. Maybe that represents a problem in my current style of care. I have been using Tidepool to get the TIR.
I have always written my own records and done my own analysis, independent of any software. I do export the Dexcom .csv/.xml and pull data from there, but mostly my records are handwritten collections of data throughout the day. I have had trouble with that system of record keeping since starting loop. There’s just too much data coming from the temporary basals and I can’t view it easily. I don’t have easy access to the full data set from loop, now. I was considering going inside the code and exporting the events into a spread sheet so that I could better analyse whats going on.
Honestly, I feel like I have completely lost my bearings without records. I can’t see clearly how the system is operating. It troubles me and its presenting problems.
Maybe I should just run open loop for a couple months so I can see the data clearly. Maybe I just close the loop when I have a real need to do so. That could work.
@Paytone, I’m running slightly tighter control limits in Loop. I used to use 80 - 200. Now, I’m using 70-180.
Using Tidepool data to compare with your A1c numbers is just as good as Clarity. I think your recent higher A1c may just be a data outlier. You could switch to closed loop operation but I would be tempted to just continue on with closed loop.
Have you tried to get help from the Looped Facebook group? They have much greater Loop experience than I do. My Loop works well so I don’t have much experience troubleshooting problems like you report. Have you read through the Loopdocs and Looptips publications?
I find the fb group to be far less responsive and a bit hostile, compared with you guys. The freeware community (and the diabetic community) can be pretty sensitive. Besides, I’ve been talking to you guys for years. I trust your judgement. I think I’m going into the code, Terry4. I don’t want to, but I think that I have to. I’ll be careful. I’ll have to be. I don’t think I’ll fall off the roof. It might not be pretty, but I’m gonna try.
Yesterday I got super low BG and deleted a bunch of files on my computer. Can’t do that again…It was like I was drunk computing. I got frustrated and just started deleting stuff. It was terrible. I got super paranoid and thought that the government was after me.
This doesn’t really sound like a problem to me. If your loop is set to correct up to 70, then that 5 mg/dl difference should not have an impact like that on your A1c.
If you were hovering in the 55-65 range for hours or if you were dipping into the 55-70 range more often than you are now then that might explain the A1c change.
Do you think that an a1c change from 6.1 to 6.7 is significant? I’ve always been 6.1, even back to the blood draw a1c, for years. Maybe 6.7 is ok. I never would have tolerated that before Loop. But maybe during system transition, its OK.
In some ways, Loop and Tidepool are more honest than the Dexcom commercial app. Like, I just walked a mile away from my equipment, walking the dog. Dexcom reports continuous CGM data (because it backfills the data upon my return), but TP shows the actual missing data up until 1pm when I return. That’s why I kinda prefer to read data outside of Dexcom’s commercial app.
But, TP isn’t perfect either. Like, you see where I go high in the early AM? My pump ran out of insulin. So, I know that there was a period of non-delivery prior to me administering that correction dose. But, you cant see that in the report. I think I need to do my own records so that the data is complete.
Loop does not help me at all with meals. Quite to the contrary. I know exactly when to bolus and how much. Loop is fighting me all the way. I considered switching to open loop once I start eating and switch back to closed loop 4 hours after the last meal. I am not there yet. I am still hoping for truce. I have adjusted my parameters so that Loop’s recommendation is closer to what I know is optimal. Loop is perfect for low carbers. I know that my life would be so much easier if you would give in and go low carb. This is what smart people seem to do. I am the forever defiant child.
My feedback: Don’t give up. Try to make nights work. I am able to stay between 70 and 100 from 7 pm to 7 am without any effort. Booking good numbers for 12 hours is half the battle. I am not convinced that Loop can help you with the other 12 hours. There are several good strategies. None require Loop.
