Really, @Yve65 !?!?! Thats awful. Never thought about it before. Thanks for that unsettling thought, OMG.
Yes, it also causes heart problems for the unborn child. Both my girls were on the large side for my size, I’m 5’1” and weighed around 115 at the start of pregnancy. Both my girls were over 8 lbs and ended up having an in-depth fetal echocardiogram that lasted around an hour. My OBgyn was constantly upset with my numbers. I saw my endo CDE who would adjust my nasal rates and calm me down weekly from 22 weeks on. My basal & bolus rates changed weekly from 18 weeks on. By the 8th month my carb ratio was like 1:3. When it started out 1:12.
Both girls had low blood sugar immediately after birth and needed formula and to be taken to PICU for a couple of hours for monitoring.
All was fine but the drs were worried they’d have a hole in their hearts. It’s less scary to have babies now, but it’s a lot of work and higher risk. And super hard to achieve those goals for a T1D. Those recommendations are for gestational diabetes too, which is MUCH easier to care for.
I love the TIR standard. Dexcom and Tidepool reports show I’m well within the standard. So it gives me something to push back on hypo scared endos who don’t like high 4s HbA1C.
This thread started me wondering why I need HbA1C tests. For now, I plan on humoring endos by continuing the tests. But if I can’t find a good endo after I move back to Ohio, I might stop the HbA1C tests.
It might be an insurance requirement. I’m not sure.
You have an excellent point - what’s the purpose of A1cs with CGM data? I think it is still ordered because SO many people don’t have access to CGM, and although it doesn’t tell the whole picture, it does give an idea of how people are doing. That being said, Dexcom estimates my 3-month average to be around 6.8, but my most recent A1c was 6.2 - so what do I trust?? Obviously the one that gives me more data. Dexcom, hands down.
You should always trust the a1c average. That will be more accurate. CGM averages can be pretty off.
The A1C in the Dexcom report is the Glucose Management Index (GMI). It is an A1C calculated by the formula GMI = 3.31 + 0.02392 × eAG. It estimates a higher HbA1C than the old formula for eAGs less than about 155.
I think these standards are pretty reasonable for the average person, even if they seem loose by the standards of a lot of people here (who are not the average). I can hit these numbers, just barely, with consistent daily effort.
Best I could ever do, pre-loop application, was around 50 - 60% in that 70-180 range. I mean, if I don’t eat then I can hit 100% in that range. Running open loop thru Loop application, I can hit a typical 80%. But, I think its mostly about the better insulin delivery at meal time that is putting me there.
I’m hanging out at about 65% in that range. So pretty similar. But that’s with checking every half hour or so (using my Libre) and often taking some action or other. Lots of work. Overnight is my biggest challenge because I’m sleeping.
I can’t wait for Loop to be available for me. That will be a game-changer, I think.
@Jen, it is likely that with Loop you will achieve 100% below 180. I do. It is not hard. No need to look at the CGM other than after carb-heavy meals. Alarms no longer wake me up at night. That is the best. It is amazing how often my BG is exactly 85 when I wake up.
You are absolutely correct as not only does Dexcom give you a Glucose Management Indicator (Similar to A1C) but also your standard deviation which is just as important if not more so. Additionally if you were not getting your A1C from a major lab that has its equipment both tested and certified on a regular basis, your A1C can only be trusted within .5% or so. So 6.8 vs 6.2 is totally normal in your case.
I’m pretty hopeful for Loop when I’m able to access it, hopefully in the next few years. I do wonder if it will struggle with many of the same issues that negatively affect my control on manual (changes in insulin sensitivity from hormones, infusion set immune reactions causing absorption issues, impact of other chronic illnesses, etc.).
I think your right to be hopeful. But, I want to set expectations in a reasonable place.
Yesterday, I was 100% below 180 without any effort using the old Omnipod PDM. Some days on Loop have been bad (Although, generally not more than 2 days in a row). While I don’t do much work monitoring my BG on Loop, I do a lot of different kinds of work to run the system. So, I just want to be cautious about setting other people’s expectations.
I dont expect hormone levels to give you trouble. I DO expect absorption to be an issue. Loop doesn’t do a ton about exercise (although it helps).
You do have to monitor the basals (to some degree). For instance, I gained 10 lbs in the first 2 months on loop. Then, when there were system failures, I would be in an ugly basal because I hadn’t set them, wasn’t aware of where they ought to be (because system automation was taking care of everything and sorta making it tough to know where they ought to be).
Of course, other chronic illness are gonna be there, playing a role in the background. (For me, personally, I do find the number of alarms to be much worse than the traditional system and its causing problems for my sleep. That’s an issue for me because of the epilepsy. But, there’s also opportunity for me to go into the system and remove the code for those alarms.)
If you have any questions, Jen, you can always IM me and I’ll send you my phone number. People are working to make the system increasingly reliable. I am comfortable using it where its at and expect that it will only get better.
Non-Loop data from yesterday:
Interesting. I’d heard the opposite from others, that Loop couldn’t keep up with huge changes in insulin sensitivity very well. I don’t even blink if my basal rates go up or down by 20-30% overnight from hormones. Some months they go up and down by more than 100% over the course of the month. Do you experience those types of shifts and Loop is able to handle them? If so, that would be great!
I’m actually on a pump break for a few days, maybe a week, to see how much of my problems are due to absorption issues. So far, my control seems pretty similar without the pump. I change sites almost daily and that seems to help with that, but it’s stressful because it’s above the maximum amount of infusion sets I get covered.
I don’t have any immediate plans to start Loop, because I don’t want to go on an older pump and don’t want to use the OmniPod (I think it would be a disaster for me with my infusion set issues). I’m on a pump currently (Ypsopump) that will hopefully be loopable in the next few years. If not, I’m likely to switch to either t:slim or one of the pumps that aren’t yet on the market.
I think your kinda similar to me. I frequently increase 30% and Loop hasn’t had trouble with this. I was VERY surprised it could overcome the 10 lbs of weight gain and corresponding basal increase needs. 100% increase shouldn’t be a problem, dependeing on how you configure the system.
I think people tend to configure their systems VERY conservative so that they dont reap all the benefits of loop. Also, people suck at setting basals. You will be fine there. Some people are VERY afraid of low BG and so act very conservatively with their settings. For instance, a woman I spoke to last week set her settings so that the maximum bolus was 6 units because thats all she was comfortable with. Mine are set to a maximum of 10 units of basal per hour and 15 units of bolus per hour. That gives the system a lot of flexibility to do what it needs to do. My system does sometimes increase the basal to 9 u/hr. It happens more than you might imagine. Mine does this sometimes around mealtime., but also from goofy hormones. The system will tend to do that only over a very short time period (like, 30 min) and then see if its on the right track.
I am, admittedly, not very scared of Low BG - particularly while looping. I went for years (as an undergraduate) not knowing how to adjust basals. Sometimes they were so high that I never took bolus insulin for meals. It was bad. But, I’ve never died from low BG yet. (I think thats one of the benefits of being a person who kicks a lot of hormone.)
There are settings for insulin sensitivity throughout the day. If those tend to be somewhat consistent (day to day), there shouldn’t be any problem. Mine are consistent enough. If not, you may need to open loop test them more frequently. If they are super variable (with proper basal), then there may be issues.
My basals are currently (If you want to see how your dosages compare to mine):
12:00 1.15 u/hr
3:00 AM 1.45
6:00 AM 1.7
12:00 (noon) 0.9
5:00 PM 1.1
Insulin sensitivities are:
12AM - 30 mg/dL/U
5:00AM - 20
8AM - 15
10AM - 15
11:00AM - 25
(meaning that I require 1 unit of correction bolus for every 25 points (american units) at 11AM.
Interesting moho001! Everyone is so different. It’s nice to see that it works for a lot of people, even if I’m not one of them yet.
I gave up on the 670G’s auto mode after about a month. Tech support kept telling me that the system would figure out my “normal” and everything would smooth out and be lovely! Problem is? … I don’t have a “normal.”
Perimenopause mixed in with a very wide range of monthly variation in hormones means that in an average month, my TD basal dose goes from 13.2 units (Basal 1, which during some months can go even lower with Temp Basals of 90% or 80%) to 20.5 units (Basal 5, with excursions into higher levels with Temp Basals of 110 % or even 125% for a few days at a time). This also has interesting accompanying changes in insulin resistance, and randomly occurring spikes and dips that can last a few hours or days.
The alarms were unending. The system kept trying to base it’s calculations on constantly changing insulin sensitivity and carb ratio rates. It was either turn off “auto” or throw the pump at a wall when it woke me up for the third time in one night saying that it had to have a BG test or it would stop providing sensor information. Plus, I’m one of the lucky souls whose biochemistry screws up the Medtronic sensors.
Now I have a Medtronic pump and a Dexcom G6 CGM. You use what works, and try to be philosophical about it.
It seems that everyone hates the 670g. I call it those most loathed medical device ever created. (disclaimer: a handful of people dont mind it one bit). I’m sorry about that whole 670g thing. Thats not the first time I’ve heard that.
Question: How did you get a new pump when you decided you didn’t like the 670g? I thought you were trapped with it under contract.
2nd Question: How was it an automated system if FDA doesn’t allow us to dose of the sensor? That always confused me.
Here’s a few answers
Actually, I don’t hate the pump itself, but the sensors drove me nuts, so as a “system” it didn’t work well for me.
First, you have to calibrate the CGM every 8-12 hours, or whenever the system thinks that it’s sensor may be off (an alarm goes off for that). And it requires a BG test for every bolus, because the FDA hasn’t approved it to base insulin doses on. If you don’t calibrate it when it demands (theoretically every 12 hours), it stops giving you sensor glucose data. A lot of people calibrate it every 8 hours, so they don’t risk it stopping providing data in the middle of the night, or something equally irritating.
The automatic mode is when the pump and CGM systems work together to figure out how much insulin you need, in microboluses, to keep your BG level. It is designed to watch for patterns in terms of basal insulin, and asks for more information (another BG test) when you seem to be needing more or less insulin than it though you would. That way, it can tell if the basis for it’s calculations is off, or if it’s the sensor’s problem.
After one to two weeks, it should be able to know your daily basal patterns, and after that it bases your microboluses on the previous 7 days, plus what the sensor is telling it. BUT, since my carb ratio and insulin sensitivity changes fast enough that the previous 7 days is not a valid basis for calculations … lots and lots and lots of alarms requesting BG tests, and BGs still not following the patterns that it thought they would … argh!
As for how I got a different pump? I didn’t. You’re right. You’re locked in to the pump for 4 years, but my insurance lets me change the CGM system every 6 months, if my doctor agrees, and he did. So I have a 670g pump that doesn’t use any of it’s fancy features, and a Dexcom G6 CGM that can’t talk to the pump, but is worlds more accurate for me. I have to calibrate it occasionally (maybe 2 to 5 times in the 10 day life of the sensor). But I compare that with the 4 to 6 times per day with the Medtronic sensors, and I’m happy enough.
I see. That clears things up. Thanks for the feedback. I would think that sensor issue would be a problem.