Hi
@Joseyjo, I'm Type 3c following a total pancreatectomy in Feb 2020. Welcome to a unique club - with its own confusions!
Some medical "experts" categorise you as Type 1, because they recognise that other medics don't know what Type 3c is. There are so few of us. The suggestion put to me by my DSN was that she felt her own A&E wouldn't realise I'm insulin dependent, but with T1 on my notes, they would at least get that bit right, should I end up there! Others simply have no idea that T3c is different, ignoring that T1s have an autoimmune problem which causes diabetes, whereas T3cs have wider pancreatic problems. It's lazy, it's worrying, but it's a reality.
When it comes to GP's prescribing, they should at least treat you as T1, and with gentle but robust nudging from you, go that extra bit further. You are T1 with extra complications. I have the Libre 2 sensor and that has become a real game changer. Before that I increased my finger pricking to 10x daily and with that started to see some true BG control (and reduced HbA1c); but the Libre is so much better, with trend indication AND alarms. If you want to gain better control ask for Libre 2; there are very few motorists who set out in their car without a fuel gauge- and those who do are destined to run out of fuel.
However I have installed the Diabox app on my android phone and now have true Continuous Glucose Monitoring (CGM), as opposed to Flash monitoring, (ie it is continuously stored there for 8 hrs but available only on request) and I'm now getting readings every 5 mins, with better trend indication, showing the rate of change from 0.1 to 0.5, along with 2 upper and 2 lower alarms. For me the low limit of Libre 2 was too low! By the time it alarmed at the top limit of 5.6 I was already crashing and I frequently went hypo before the Jelly Babies etc kicked in. Now I have it set at 6.0 by day, reduced to 4.3 by night, with the Urgent low alarm at 4.0, which loudly, but happily for me, wakes me during the night.
I have a brittle form of diabetes with significant rapid swings from high to low and back again, which I have recently found out is moderately common amongst T3cs . I can get from 9.9 to 4.1 in 10 minutes. The yo-yoing is tiresome and debilitating as well as being bad in the longer term. Libre 2 with Diabox has greatly reduced that and I now usually spend over 80% of "time in range", ie between 4 and 10. I still have the odd hypo, and a few more "low glucose events", so this remains work in progress and probably will for a while yet. I'm still learning: how to not overreact when low, thus reduce the rapid swing to high; and as I get braver to correct with additional boluses when high, with little sign from CGM of that high reducing (but I'm still cautious about extra bolus, keen to avoid insulin stacking and then bringing a further rapid swing back to very low).
Incidentally, I was also trying to stay below 8 and abandoned that, a decision subsequently endorsed by the Endocrinologist I had a phone consultion with in July. While T3c is a small club, the range of pancreatic problems that categorises us as T3c is large - so we are all diiferent; a few T3cs don't even need insulin, neither basal or bosul, but other pancreatic functions are compromised. For me no pancreas has the only advantage that my insulin production is nil, so no chance of getting an unexpected insulin surge!
I have found Gary Scheiner's book "Think Like a Pancreas" most helpful. I take Creon on an industrial scale (according to the gastroenterologist) and I'm pretty sure I still get malabsorption after some meals; so while I fastidiously carb count I do get erratic days in my responses to insulin dosing. Some of that is explainable (sort of) but often isn't. I have different ratios for different times of day and my insulin sensitivity is different for when I'm normal, ie c. 5-7 and much more resistant when I'm above 10; I haven't really quantified that numerically - it feels more like a guesstimate than an accurate calculation!
Good luck with all of this. There's a lot to get your mind around, with what sometimes feels like an insurmountable number of factors that can affect your BG from minute to minute. But it is manageable, it just takes a bit of time and effort and accept that not every day is perfect!
