Our Endo appointment is coming up in a couple of weeks so I didn’t have to do this, but we have been working so hard and transitioning to so many “new” things (loop being the biggest) and I was just nervous so decided to do a home A1C test which I had purchased a month or two ago and hadn’t used yet.
And if this is correct, I am SO happy. Before this test, the lowest Liam’s A1C has ever been is 6.9. We are higher; however with our severe lows due to getting loop dialed in and we know we need to work on that (we are at around 2%, up from 1% that we usually have.) But we are ecstatic if the test is correct.
Our severe percentage is higher by design honestly. From what I’ve learned here about the GLUT3 enzyme and how little to no scientific studies can be linked to brain development issues from children who have had hypoglycemic episodes, I’ve become less concerned about his BG’s dipping into the 60’s, 50’s and even 40’s - AS LONG AS THEY DIP IN AND OUT QUICKLY. 30’s are a problem due to the GLUT3 enzyme being unable to operate under 39 to supply the brain with the glucose it needs. So I’ve made a conscious decision to care less, honestly, about when he dips under 70.
Do we want him to go under 54 (the “Very low” cutoff point in Clarity)? Of Course not! But am I going to beat myself up over them any longer and try to prevent all of them? No…it’s just not critical to avoid them. The important part, as I’ve learned, is to just make sure you get in and get out quickly.
So the problem, in my opinion, is in that “Severe Low” percentage even being tracked by Endos, because it’s misleading to say that anything under 54 is “bad”…nothing is provided that can prove that conclusion.
So, yes I want to prevent all lows…but I also know that temporary lows in the 40’s, 50’s and 60’s is not going to HURT Liam, so if it happens, it happens. And if you’re tightening your BG range and lower your SD, you will dip into those numbers occasionally and that will bring up your “severe low” percentage. I’m prepared to argue the point with the Endo if it comes up as a problem.
Endo - do you know what the GLUT3 enzyme is, and what’s it’s function is? Do you know the threshold that it works within and did you know that it’s working even when there are only trace amounts of glucose in the system? (Thanks, @Eric for that valuable knowledge)
What I am most concerned with is in giving Liam the best health NOW as well as IN HIS ADULTHOOD. Driving that A1C down is what’s going to make this possible in his adulthood.
There is a lot to discuss here. When I get back I can get into more detail. The brain uses more glucose than any other organ! There is s reason the brilliant body is designed so that the brain can get glucose in a way that is more reliable than other body parts. The brain can get glucose long after other parts can’t. It uses GLUT3.
I’d love to discuss in depth. Can’t do it from my phone.
I’ll be back to my computer in a few days.
Here is only one of a million useful links on the subject.
No glucose reading is worth “beating yourself up” over. Some might be worth reflecting on to see what maybe could have been done differently, especially if they are extreme, but “reflecting on” is not “beating up”.
It’s so funny how the notion of “severe low” has changed. When I was a kid, on two shots of R and NPH a day and testing four times a day, we used to get asked at each appointment if I’d had any severe lows. But what the doctor meant by that was did we have any lows that progressed to the point where I was semi-conscious and needed someone to rub glucose gel into my cheek or unconscious and needed someone to use glucagon or call an ambulance. And I did have several lows like that, as they were pretty normal back in the '90s.
The idea that 54 mg/dl magically makes a low go from mild or moderate to severe is crazy. It’s just a number. And, given that meters aren’t even 100% accurate, that 54 mg/dl could have been a 59 mg/dl or a 62 mg/dl, or that 56 mg/dl could have been a 51 mg/dl or a 48 mg/dl.
In my experience, the only way to lower the average, standard deviation, and low percentage is to eat low(er) carb. My recent experience in lowering carbs has been that my low percentage and very low percentage both dropped even while my average and standard deviation dropped. But, yeah, outside of that I think a lower A1c means more lows.
I do think one danger of frequent milder lows is that one can create hypoglycemia unawareness. I’ve lived with that off and on, and it can be dangerous even with a CGM due to the lag. I also do think it’s important to respect lows, as any one does hold the potential of becoming truly severe (or heralding a truly severe low, if there is a pattern occuring, which I think is likely what doctors are concerned about). But “respect” doesn’t mean freaking out over every one.
There isn’t a high or low that happens that I don’t reflect. Reflect and consider whether I could have acted a bit earlier, given a small amount more carbs, etc. Beating up, in this context simply means being upset by not living up to some artificial and nonsensical standard.
Re: Low carb, it may be something we do as he gets older if he wants to go that route but we won’t be going that route with him without his desire to do it. Food (all food) is just too good imo to allow a disease to take away that pleasure… One of life’s greatest pleasures imo). But when he gets older, if he wants to do it, heck yes! I will always support him. I am ok with a higher SD as the trade off.
Oh, I didn’t mean to imply you should go low-carb. That is a totally personal decision, especially with a family. My situation and attitude towards food are totally different. I just meant that eating lower-carb is the only way I’ve ever been able to lower all three of those statistics. Otherwise, a lower A1c always means more lows.
Our little one’s last A1C was 6.2 and my wife got an earful from the nurse about a few too many lows in the high 3.0s (60’s) (I was not at that appointment). I keep telling her not to worry about these but it is difficult. I have to share the GLUT3 thing with her.
We still work on lowering the severe low because honestly, Samson feels super crappy the moment he touches down below 70. And he starts acting like a maniac, kicking his little brother, jumping around, and he’s clearly just not 100% mentally. I do worry that some microvascular complications could be tied to lows and we just haven’t had the tools or granular data to detect them yet.
However, I don’t sweat our severe low percentage when it does happen because ultimately I’m always just trying to do my best at avoiding both lows and highs. So as long as I’m reviewing data, making informed decisions and always trying to improve, I know we’re doing the best we can for Samson. And I don’t think there’s strong, actionable evidence that transient dips in the 50s do harm. There is such evidence that A1Cs above 7 have a pretty damaging effect, so we work like anything to keep Samson out of the 7s, but beyond that, it’s just about continuous improvement.
I experience an impairment of reasoning ability in the 60s and below. So when Liam gets to the age where mental acuity is a safety factor (such as when driving or running the chainsaw) then lows may become an indirect hazard even if they don’t cause any direct damage. That plus Jen’s reminder about developing hypo unawareness would be my motivation to stay out of the 50s and lower.
I really don’t know how to evaluate the tradeoff between the health benefits of modestly lower A1C with the risks of time spent in the 50s and below. For myself, I run the A1Cs in the upper 5s, the %time below 55 around 1%, I must never be unable to rescue myself from a low, and I must avoid being below 65 when mental acuity is needed. I’m satisfied with that, but I can’t really justify it as any kind of optimal point. Anyway, it seems like Liam is headed into this same region, and I think it’s a fine place for him to be.
Yes, being hypo unaware is a significant issue that we are definitely going to be on the lookout for. Right now we are so pleased the Liam has a nearly 100% accuracy rate for telling us when he’s low. There have even been multiple occasions now where his CGM data has read into the 150’s to 200’s and those numbers were off. He now always says “Papa (or mama), I feel low.” And we’ve learned that no matter what his CGM reads, we should check his sugars because he’s nearly 100% of the time correct when complaining of the low.
I was knocked out of my socks the first time his CGM read 150, he said he felt low and he was actually 55. Since then, we check him 100% of the time now anytime he says he feels low, regardless of the number on the CGM.
Congratulations on Liam’s expected membership in #Club5
Extremely difficult to manage an active youngster’s BG at that age
Unfortunately for me, hypo awareness is something I lost after the first 35 years of T1D. I’m pretty much dependant on my CGMs. My TIR management is excellent (98% with SD of 1.3 (23 mg/dl) past 90 days. Even so, hypo awareness is not something I’ve been able to bring back.
