@Silvershoes, thank you for the further information. You certainly had a long and no doubt very wearisome introduction to this world of pancreatic underperformance and now T3c. I hope (expect) that with your Consultant's letter your Libre will be put on a permanent prescription basis. Given that GPs were authorised to write such prescriptions in their own right a couple of years ago, such petty bureaucracy and administration ought not to be brought anywhere near the patient; but so be it.
There can be confusion about Diabetes Nurses and Diabetes Specialist Nurses (DSNs). In a GP Surgery there is often a Nurse on the Practice's permanent staff who has the lead for the care and management of patients with T2 diabetes, perhaps including Gestational diabetes. Such Nurses are often referred to as the Diabetes Nurse; but they don't get to see the insulin dependent T1s, who normally come under Hospital based teams, which include DSNs. From what you say your Practice has a DSN visit periodically to help with those more unusual diabetic cases and probably along the way that DSN is training a Practice Nurse in some of those oddities they wouldn't normally come across with more routine T2 treatments.
Very few Health Care Professionals (HCPs) have heard of or come across someone with T3c; so I'm far from surprised that your Practice Nurse was not familiar with your diagnosis. In reality you will become the expert in your T3c and as you become more stable, with your experiences from trial and learning, you will be unilaterally adjusting what you need to do to remain comfortable.
I didn't talk about Creon, there was already so much to mention. My understanding is that you cannot overdose on Creon and you need what you need. There is information on an NHS website about the colour and texture of one's bowel motions (a series of pictures), which I needed to refer to while trying to get that aspect of my life back under control. If your digestive enzymes aren't playing then what you eat isn't providing the nutrition you need - hence the weight loss you refer to. In my case, after my total pancreatectomy, I couldn't get any sort of metabolic stability; I was at first on pre-determined doses of insulin and of course some meals were not creating enough carbs so I was constantly low and repeatedly going hypo, then going too high as my hypo response snacks were giving me glucose with minimal need for digestion. Nowadays I have the measure of this and get through 1 tub of 100 x 25k creon capsules every 3 days. So in excess of 30 per day. Much less Creon and my BG goes haywire!
Because I am wholly insulin dependent I don't have any experience in juggling a basal insulin like Toujeo and Metformin to achieve a useful measure of BG stability. I agree with
@rebrascora's thought to post a day's graph from a screenshot of your Libre results and I suspect some of the clever folk here who enjoy a bit of detective work might see a pattern that can be tweaked to help you get more stability. In general many of us found it useful to have simple, lowish carb breakfasts that are very repeatable day by day. From your Libre you should be able to find an optimum first meal of the day that gives you a stable start to the day. Then move on to your lunches. Don't expect flat graph lines through the day; rather expect after eating a definite rise in BG then a steady recovery as your body manages that meal. And so on.
I am also not familiar with the Puestow Procedure, but I can see from a Google search that it has a good and safe outcome for many people, which bodes well for you.
I think that is enough for now; I'm awake at this silly time since I've had a turbulent (erratic!) day and I got pretty close to hypo just before midnight. After treating that with a measured amount of fast carbs (200ml orange juice carton, total 18gms of carbs) I prefer to stay awake and check that my BG has eventually stabilised. This is the brilliance of having CGM, I'm able to stay calm and gracefully wait and watch. Now back at a steady 6.2 I can happily go to sleep.
