Hi Nanette - this is a lengthy ramble on my part, so be forewarned!!
Hi, thanks for responding so quickly. In 2021 I had necrotising pancreatitis and was in ICU on life support for 4 weeks.
Yep, 4 weeks in ICU sounds really serious. You had good reason to be concerned.
Was lucky to survive. 9 months later a huge pseudocyst was drained which was full of necrosed pancreas, but I'm not sure how much healthy tissue was left. I didn't develop diabetes until 3monrhs after that, triggered I believe by catching covid. I was told at that time T3c while in hospital, but that for all intent and purposes it would be treated as T1.
3+ yrs ago I was discharged as T1. T3c didn't seem to be part of the vocabulary at all then, even from the Churchill Hospital who are pioneering Diabetes research.
I'm on levemir and novorapid & use a freestyle libre sensor. Keeping BG reasonably stable takes constant surveillance and low carb diet, but I do get high post meal peaks and can often be erratic for no obvious reason. I take Creon.
I started on Levermir and NovoRapid and changed my basal from Levermir to Tresiba, which has worked well for me ever since. Everyone's doses are different and can be markedly so. My Tresiba is 9 units per day, for Levermir it was c.25+ for the 2 daily doses. I think this big reduction is a mix of much more even performance by my basal and better ability on my part to manage my days. Don't take my doses as typical or some sort of average; during my early days I just constantly wanted some sort of feel for what other people took.
I fully carb count; I used to be meticulous about this but since my DAFNE course (including some changes in what doesn't really need counting) - plus in conjunction with the huge benefit of CGM showing me what is going on every 5 minutes - I've been much more relaxed about not being too precise. My NovoRapid currently is typically 7 for breakfast, 5 for optional lunch and 7-9 for dinner. Those NovoRapid doses are my start point because when I'm very busy (or this week while it's been so hot) I've reduced my bolus by 20-50% because I know my natural insulin resistance will be markedly reduced. Such reductions aren't following a set of dosing rules they are just my adjustments learnt from the last 2+ yrs about what I need to do to stay somewhere in range. I now accept I might be a bit adrift sometimes and if dropping low after a meal I'll just eat a few more carbs; if going too high I'll either take some moderate exercise or activity or an insulin correction dose. That depends on what I'm doing, how I feel, the weather possibly or just whether I'm concerned about' the colour of my socks'. I have no hard rules, just judgement and guesswork along with a confidence that I can adjust again if I need to.
Thank you so much- yes I did see the bit about 3c and was directed to forum from there. Everything you & ,proud to be erratic' have said, makes sense and clearly there's no definitive answer except to do as you suggest and 'roll with the changes' I think I was getting complacent that I'd 'sorted' my diabetes and this current feeling of being out of control is a bit unsettling. Your wise words have helped put it in perspective and for that I thank you both
In the last 3 yrs each posting on this forum from someone with T3c has emphasised how diverse this small and select Type of diabetes is. And that is without those with a slightly different T3 (x), such as from steroid or alcohol damage to their pancreas.
You, Annette, at least have the clarity on your medical records of T3c, as if T1. Some didn't start from there, withba default diagnosis of T2, so it's been even more uphill for them to get Health Care Practicioners (HCPs) on side.
I think, realistically yet with absolutely
no medical qualification, it is unlikely your pancreas can actually improve with more time and therefore insulin dependence is going to be with you until an entirely new "cure" emerges. If that cure comes, I don't expect to be at the top of that list to receive that new cure and if it involves any more surgery I probably wouldn't volunteer!
On Wednesday I had my periodic consult at the Oxford Centre for Diabetes, Endocrinology and Metabolism (OCDEM) in Churchill Hospital. I feel pretty privileged since OCDEM is at the forefront for both D technology and islet transplants, so I see Consultants who instil a huge confidence within me about their knowledge and from their empathy. The Dr I saw on Wednesday gave me a lengthy review, an upbeat conclusion and most gently and tactfully offered ideas for modest changes.
One of those comments was in connection with the major delays I frequently get from my NovoRapid bolus. Like you Nanette I can wait up to 90 minutes before starting my breakfast, particularly. I find if my waking BG is greater than 8, at most 9, I need a correction well before my breakfast and the time of that pre-bolus to bring my BG down to 7 before eating is essential. Or, my BG remains stubbornly high all morning. Even with a fully active morning. I get a similar difficulty in the evenings; slightly quicker perhaps because I'm very rarely sedentary for much of any day and that constant activity is improving my natural insulin sensitivity. A recommendation was to change from NovoRapid to Fiasp; which I'm considering and currently undecided about. Change is going to be a challenge - despite its slowness I've got a routine for NovoRapid. But that slowness is very noticeable now we have moved and will be sharing with others for the next 6 months.
Another comment made was that my D was sufficiently unusual that the "business case" for my getting increasing tech should be positive. There was an immediate caveat of subject to funding; not a surprise. Significantly the Dr said my age should not be a barrier, medical need was the first criterion (although I anticipate and would want scarce funds go to children first).
Something also remarked upon, which I'd previously heard and read around: was about my very real risk of diabetes burnout for those on MDI. Every single day we make '305 decisions' purely in the process of D management, a huge commitment in relation to people who don't have D. I had a high failure rate with Libre 2 and not much better with Dex One. I'm self-funding Dexcom G7 which is much, much better for reliability and accuracy AND I have noticed this does make each day less stressful. I finger prick infrequently, because I trust the alerts and displayed readings. Since advice from that Consult I've raised my in range display for high to be at 12, not 10 and low above 6, prev 5, targeting to be neutral at 7.0. This is generating a lot less alerts with a consequent lot less reaction by me; fewer moments of declaring out loud "Oh leave me alone!" before looking and making 'yet one more decision'. (Apparently!)
So Nanette you might want to consider logging as much supporting detail as you can about odd D days, weeks etc and use that data to support a request for a pump. There is a Technical Appraisal (TA) going on right now, to make closed loop much more widely available for T1s. Due to report mid October and if positive NICE have agreed to provide Guidance by December; implementation won't be instant but it all should be a positive advance. Closed loop means much more automation in addition to assistance from a pump. I wasn't in a good place to consider pumping 36 months after my surgery; you might well be.
All for now, sorry its such a ramble!
