@Bobbingbuoy, with the strong caveat that we are all different, my BGs were anything from low 3s (even some high 2s) to mid 20s after I was discharged from Hospital and my basal was around 14 units of Levermir twice daily plus NovoRapid foor meals. That was for someone with zero pancreas.
But when I switched from Levermir to Tresiba I was started on 15 or 16 units 1x daily (replacing 28 units of Levermir) and that Tresiba has steadily been reducing. Now I'm on only 8.5 units of Tresiba 1 x daily. I would say today's 8.5 units reflects what I actually need, despite no pancreas. So trying to compare what you take currently with others during their early days starting on insulin has very little value - either now or what you might end up taking when you have arrived at a more stable state in due course. Also those guiding your changes are trying to find what you need - because you need what
you need.
@helli, I was told before my Hospital discharge to be very aware of the ketone risk from BGs at 15 upwards. Although I rarely need nowadays to check my ketones I conclude my risk is the same as real T1s.
I'm afraid that T3c covers quite a few variations of pancreatic damage causing our D. So even though in % terms we are a tiny proportion of the overall D types, our T3c circumstances can be very different in initial symptoms and varied in how each needs BG management.
Our commonality within the T3c diagnosis is principally that we have pancreatic damage, which is not from the autoimmune condition that defines T1 and so our insulin production is hindered by that other panc'y damage. We (mostly) don't have the high levels of insulin resistance that defines T2 (who generally produce ample insulin that their bodies struggles to utilise). Our other commonality is that our panc'y damage is invariably from another ailment.
You,
@Bobbingbuoy, have pancreatitis that started your panc'y damage; I had pancreatic cancer which needed my total pancreatectomy; we have a dormant member of the forum who was in an accident that badly physically damaged his pancreas; someone else with damage from alcohol poisoning and others from prescribed steroids for their original ailment that have damaged their panc'ys. We each have come to our D from a different origin and we each have a slightly different perspective about our D. Likewise the Health Care Professionals (HCPs) arrive at a different perspective in how they describe T3c in the articles you can find on the Internet, because there is this quite wide disparity in how each of our smal total nos got to our D.
This also leads to the seemingly random way some of us get CGM prescribed from the outset (often by being diagnosed "as T1" (which clearly we are not) or "as IF T1" (which feels more honest) or really unhelpfully diagnosed as T3c then treated as T2. That latter case results in a T3c being managed by a GP Surgery, (in accordance with the NICE Guidance for T2s). But that Practice is highly unlikely to have the skills or experience to do that properly, yet the GP or Surgery Nurse doesn't realise that the T3c patient needs the specialist skills of a Hospital based Diabetes Team. And those T3c patients are probably unaware that they are being denied the correct treatment and care.
So it is a muddle but the numbers involved are tiny - but increasing slightly as the awareness of T3c as a different type, is now increasing.
I sometimes prebolus up to 45 minutes before my food. You might find it helpful to gently experiment by inreasing that 10 mins gradually. The goal here is to get the insulin in your blood stream at the same time as your food gets digested and the carbs get converted into glucose and reach your blood. This is not easy and is more of an art than a bit of science!
Trial and learning is needed, along with some understanding of which meal is going to digest quickly and which less so. Also how physically active you have been in the hours (sometimes a day or more) before that meal. As I said, not easy; but in due course you will acquire an awareness of this complexity in the same way we just inwardly learn how to manage complicated things and end up doing those things almost unthinking. If you drive you can no doubt relate that process to the transition from the first driving lesson to 12 months after passing arriving test.
I have seen
@Bobbingbuoy on 22 Feb that your Hospital had prescribed your Libre 2. Do you now have this? CGM makes the management of this complexity a great deal easier (but its still not easy!)
I might start my Creon a few minutes before, but usually I only take my Creon after my first mouthful of food and then spread steadily out with my food. I think the risk with Creon is that if that first mouthful is delayed the various enzymes are potent and need to have some food to work on. Not an empty stomach.
That makes some sense - although until the diet element (understanding what food digests quickly for example) (and what foods are high carb that needs you to take extra insulin for) is pretty fundamental to how much you are able to attempt to manage your BG!
If your insulin increases are steady and in small increments, with decent intervals in between to consolidate each increase and confirm each increase was not excessive - then your fears of dropping to a very bad low should not be realised and certainly not suddenly.
