Our biggest challenge is that the CGM is hardly ever accurate when Liam is super high (above 250), or low (below 65). 9 times out of 10 when the CGM has him as low, he’s not, and when it shows him as super high, he’s not. So, before treatment in Liam for either high highs or low lows, we always do fingersticks. G6 hates calibrations, so we end up just waiting them out because calibrating causes endless calibration loops. CGM is great for showing trending data, but for Liam, the CGMs are only really accurate when he’s in the actual range we have set for him.
If your honeymoon is predictable, great! In Liam it caused more headaches. Once she’s no longer producing, once you dial in the settings for any pump/loop system, I think you’ll be set. You are doing the #1 most important thing and the thing I spent every waking moment doing for the first 2 years…reading, educating yourself, asking questions and learning from people who LIVE with diabetes. Collectively, I think we have thousands of years of T1D and T2D experience here on FUD.
We are in southeast Florida. I’m more than willing to travel to any relatively nearby areas. I’ve also been wondering if maybe we could do televisits with someone considering all her CGM data can be shared.
Also, I’m not sure if this flags me as a weirdo, but it would be amazing to find an integrative endocrinologist that’s open to working with nutritionists and others forms of holistic care. We have a functional medicine doctor as part of Nova’s team that has done wonders for her immune system.
We have ONLY televisited with our Endo since Covid started. She wants to start back up with periodic face-to-face visits, but the only requirement is that we have to live “somewhere” in Virginia (probably because she’s only got permission to practice in this state.)
The dusfunction is with the beta cells, because they are not working like they should, the alpha cells are not getting and delivering the appropriate communications to rest of the organs the body we have difficulty initiating and responding to messaging to support glucose management. See the illustration below to see how much of the body digesting and management glucose.
That diagram is really helpful.
I naively thought that since she did not have any detectable beta cell autoantibodies and her insulin levels are in the normal range, that they were working well and it was some other element causing the unstable glucose levels. I’ve even gone as far as to think she was insulin autoimmune at one point. This is what happens when you’re left to figure stuff out on your own.
Just wanted to post an update.
I moved her lunch up by 30 minutes and started adding in apple cider vinegar to her morning regimen of supplements. My hope was to get lunch metabolized before she fell asleep and amazingly, she hasn’t gone above 145 since.
It’s only been five days, but it has been consistent across two sensors, so I think the trend is broken. For now, anyway.
There are so many adjustments and things that can make a difference. It just takes time to figure them out. It sounds like you are doing a great job with it.
Thanks to a combination of that extremely reassuring post on glucose transporters paired with a book I’ve been reading on the relationship between quick rises and drops in blood sugar levels (the correlating food causation too) My daughter is now slowly climbing to 120ish post meal and then steadily coming back to her baseline over the course of a few hours. We have had zero spikes and zero lows for two weeks now. Even during naps. Still no exogenous insulin.
Thanks to everyone that provided input on the original post.
