Hello
@sololite, Welcome to this select club.
I had a Whipple and total panc'y in Feb 20 to resolve my pancreatic cancer. This made me Type 3c, although I didn't know that then, as I was discharged as T1 even though I clearly didn't have any of the T1 autoimmune symptoms. But it did mean that I was treated as if T1 from the outset.
The classification of T3 is understood in N America as being for diabetic folks with dementia. There was an International symposium which addressed the reality that there are other types of diabetes, beyond T1 and T2: caused by other things than autoimmune destruction of insulin making capability, or T2 from inability to use the insulin being produced. These different sorts of diabetes often need different approaches to the treatment and frequently overlapped with another, fairly different, co-morbidity. (That is not to say that one can't be T1 or T2 with other ailments.) They arrived at T3 with 'flavours' from a-k for the many types of damage to one's pancreas - ranging from damage by accident, drugs such as steroids, alcoholism, etc.
Type 3c was allocated to damage from pancreatitis and /or total pancreatectomy. The Symposium did not formally agree these definitions and the World Health Organisation (WHO) held back from formal endorsement - which remains the case today. However T3c is, very slowly, just becoming recognised by a few (alas far too few) Health Care Professionals (HCPs) as a sensible solution to a fairly obvious quandary: not all diabetes can be categorised as either T1 or T2. For example ours, after total pancreatectomies. My extra co-morbidity is the risk of pancreatic cancer, along with some less significant issues.m - which doesn't need much consideration while I continue to be in remission (thankfully).
I'm not sure I can tell you much more about T3 and specifically T3c, other than, perhaps, having no pancreas is in my opinion a bit more difficult to manage than other insulin dependent diabetes scenarios:
Because we are missing most of the normal digestive enzymes then the Creon is vital to give us a fighting chance of getting the insulin dosing right for the carbs we presume are being digested. Finding the right balance of Creon feels, to me, important; I've been reassured by several people that one can not overdose on Creon. Of those of us on this forum who are kindly referred to as Creonistas, there are slightly different views about how much and whether spread out or not across a meal. I spread my capsules moderately evenly across each meal. I never bother to grab Creon when I'm taking a hypo response, such as Jelly Babies - and they always seem to work! But I do take at least one Creon capsule with a milky coffee and 2 capsules if there is also a biscuit with the coffee break; as well as with main meals.
We lack vitamins A, D, E and K and I take a multi-purpose daily vitamin tablet as well as extra Vit D. I have to pester my GP Surgery to include 6 monthly vitamin checks with other blood tests - each time it feels like an issue, unnecessarily.
Probably the main thing is the missing other hormones apart from no insulin. We have no Glucagon hormone, so our brains can't communicate with our livers: they never could, but would send instructions to the liver through the pancreas - to send thw messenger Glucagon to get the liver to open the glucose store. Who knew that our evolution was so convoluted! We also have no somatostatin hormone, which does a balancing act between insulin and glucose in the blood. And we are missing Vasoactive Intestinal Peptide (VIP) which helps with releasing water into our intestines to promote the secretion and distribution of salts and minerals etc.
The missing insulin we deal with, as you already know; knowing we have no Glucagon at least means that we know we have to stay ready and intervene (snacks) to nudge our BG up when going low (our bodies won't do it for us); the somatostatin has to be down to us being vigilant; and the VIP we can only offset by being good about maintaining decent hydration levels - I'm not sure we can ever know if we do that well! Oh yes - one of our missing digestive enzymes is actually a hormone, Gastrin; but Creon deals with that.
I had a fair amount of weight loss after my Whipple, not helped by the adjuvant chemotherapy 3 months later. I was clearly not digesting everything I ate and my bowel activity was downright offensive. The HPB dietician was brilliant, but after my discharge from Hospital I came under a different Hospital and the dietician associated with that diabetes department was of very little help. For a while I had high nutrient drinks, but they didn't help and it took some 2 years to finally reveal I was having a particular bacterial created malabsorption which needed a special antibiotic, rifaximin, that needed specific approval before it could be prescribed by my Gastroenterologist. The malabsorption meant that carb counting for insulin dosing was less than helpful (and my consequent BG behaviour gave me the idea for my forum name!). It was the Macmillan dietician from my chemo phase who did some research and suggested the malabsorption possibility.
Anyway, enough from me. I will be interested to find out if you find having no panc'y causes extra management of your D. You already have several years of this D malarkey under your belt, so perhaps I'm over-stating matters. I maintain a decent HbA1c, so far and above the minimum Time in Range criteria. I am now, after giving this a lot of thought, just taking my first steps to formally ask for a pump. It seems to me that more tech can only be of more help and need less daily (hourly) management to keep ahead of rapidly changing BG. Good luck.
