Aaah Yes of course, I should have guessed that. Sorry!
Hi
@jsw, sorry I'm late to this dialogue - been distracted recently!
I'm a T3c, since Feb 2020 when I had a total pancreatectomy to arrest pancreatic cancer. After recovery from surgery I had some chemo and so didn't really start to grapple with my diabetes until late Oct. So my T3c is, I think, a bit different from others who've replied to you. You will read that we are all different and this applies just as much to the tiny group of T3cs as it does to the much larger groups of T1s and T2s.
No pancreas means no latent pancreatic interferences or surprises; but no pancreas means I have to manage all my missing pancreatic functions: I'm not only missing insulin, but 3 other hormones, of which (perhaps) glucagon is the next most important. Without Glucagon, at age 70+, I have negligible growth hormone and so really have only got adrenaline to stimulate my liver to release glucose into my system when I have low BG. Consequently my DM is extremely brittle (erratic); I have crashed from BG9.9 to 4.1 in less than 15mins. At that speed arresting the fall is effectively impossible. Before I had Libre 2, finger pricking simply didn't adequately inform me and I previously had some awkward lows! So, while in some ways as a T3c I have similarities with T1, eg certain insulin dependency; my problem has been that very few medically qualified people understand that T3c (or at least my T3c) is extremely difficult to manage and is NOT the same as most T1s. If you are not yet under a very competent Endocrinologist and a Diabetes Spec Nurse (DSN) you will find managing even more challenging. It would be rare for a GP's Surgery to have a DSN rather than a nurse designated within the Practice to be the focal point for diabetes; of all diabetics in UK c.90% are T2, 10 % T1 and T3cs are a miniscule percentage; practice nurses mainly deal with T2, since many T1s are under DSNs or have managed their condition for so long they know as almost as much as specialists. Without knowing where exactly you are in Surrey, you might consider asking Frimley if they would refer you to the Royal Surrey for the T3c specialists. You certainly need to have an Endocrinologist who understands T3c; your GP should have referred you already - but chances are your GP simply doesn't understand the significance of T3c. Mine didn't and I've since realised most don't; a recently retired GP friend freely admitted he was unaware of T3c differences until I told him my diagnosis; then he did some research. I have been extremely lucky that my Oxford surgical team from Feb '20 kept me on their books and after a recent surgical review in Oxford I now come under the Oxford Centre for Diabetes, Endocrinology and Metabolism. I live in Bucks.
All that said it is not all doom and gloom; but 20 months on I'm still finding that managing my DM is pretty full time. I'll return to that theme shortly.
I take Creon (on an industrial scale according to my gastroenterologist) to provide the necessary digestive enzymes that I can'tvget from my pancreas. I agree taking Creon is straightforward, albeit something else to remember at meal times. Several specialists have reassured me that there is no danger from taking too much Creon. The surgery has altered my internal plumbing, a bit, and it seems I "malabsorb" some of my food. So while I do weigh food and diligently carb count, if not all food is fully digested, the carb insulin ratios are more of an art rather than a science; this adds to my brittle diabetes. I did the BERTIE course on-line, no waiting list, which was fine; but I really appreciated the book "Think Like a Pancreas" by Gary Scheiner. He is a longstanding T1 and his book is unashamedly for insulin dependent diabetics; whilst he is American he conscientiously and most helpfully translates the US numbers into our UK/ European equivalents. He has a substantial segment on carb counting.
Libre 2 was a significant improvement on finger pricking and my DM became more manageable; but I came across the Diabox app which, on my android phone, now provides me with Continuous Glucose Monitoring (CGM) reading directly from Libre 2 and using Bluetooth Low Emission (BLE) and that is the real game changer. I eat all meals and snacks with one eye on my CGM; if the carb intake is too far behind the arrival of the bolus insulin, (timing is important) then I'll eat the high GI parts of my meal first and that often works. If the carbs have arrived before the insulin then I can either slow down or add more oil/ butter/cream and let the extra fats slow down the digestion. I'm not trying to keep my BG constant as I eat, just in range between 4 and 10. This is still not perfect, but far better than trying to flash scan my Libre 2 every couple of minutes! Diabox also has better alarms, provides a numerical value to any rise or fall and can be recalibrated to match actual BG - but of course only when there is little or no BG change; so I lean heavily on Diabox day and night. You will definitely need at least a DSN, if not a Consultant, to set up the review for you to have Libre 2; the good news is that I have seen only this week an announcement that NICE have confirmed that from now on all those entitled to Continous or Flash Glucose Monitoring will get it on the NHS - so that should end the post code lottery. I'll look for that reference on Friday (busy tomorrow).
This ramble brings me round to my latest view of DM: I liken it to managing 3 strands of a rope, which needs all 3 strands for best performance.
Firstly there is the basic mechanics of taking carbs (counting etc) and insulin (dosing/injecting/timings). Secondly there is medical knowledge: knowing more about one's metabolism helps with the basic mechanics; understanding which carbs have higher or lower GI allows some refinement; understanding how the weather, activity, stress etc affects DM helps explain (even if retrospectively) why a day went badly or better - helps pre-empt bad days!
Thirdly technology: just viewing Libre 2 continuously through Diabox opened my eyes to the wider potential of even more technology. I feel I'm ready to explore asking for a pump; I'm happy that I know how to manage old school (finger pricking and Multiple Daily Injections (MDI)) but the speed at which our mobiles have advanced in the last 10 years means there is every chance the DM technology will step up, even if not so quickly. My immediate next step is to get my Diabox app displayed on a Smart Watch - so I'm not walking around with my phone permanently in my hand!
So there is a huge amount to get your mind around. But it is possible that some (arguably much) of what I've learnt since Nov '20 is now becoming reasonably well ingrained in my daily life. I also believe that "Knowledge helps Dispel Fear". Despite lots of knowledge sometimes seeming confusing, I find I can often think back and explain to myself why I had a bad day. I certainly find my diagnosis less frightening, but still at times intimidating. I now just need to remember the lessons learnt and apply them !!
I hope some of this helps.
