Welcome
@AlexRM, I had a total pancreatectomy at the Churchill in Feb 20, to deal with the cancerous tumour that was engulfing my panc'y. I had no prior pancreatitis or any need for steroids or indeed any other medications until jaundice from a strangled bile duct a few weeks earlier; so everything came together very swiftly into this insulin dependent status. I got 3 months surgery convalescence before some precautionary chemotherapy and then I was better placed to focus on managing my blood glucose.
For my first 12 months I had no CGM, just finger pricking and testing, some 10-15 times a day. Despite my Whipples Procedure in Oxford, I lived in Bucks and was discharged to my GP and a delightful DSN based in Stoke Mandeville Hospital. She gave me moral support, during covid, by phone and email; but very little explanation about anything and I gradually came to realise that she had no true understanding of my T3c - nor did many Health Care Practicioners (HCPs). So I had for those 1st 12 months very poor BG control, stuck on a roller coaster of deep, lengthy hypos then serious highs, which also left me feeling dreadful, albeit I didn't understand or even know that being very high was also unpleasant. After about 10 months I taught myself how to carb count, found some online guidance about better practice for Creon as a medication and eventually got Libre 2 in Feb 21, which was a revelation.
Most importantly, I also heard about Gary Scheiner's book "Think Like a Pancreas" and read my copy from cover to cover (except the Chapters on pumping, having been told I was ineligible. I'll come back to that, shortly.) I was by profession a Civil Engineer and realised that I needed to try to manage my D as if it was an engineering problem and made it my business to learn as much as possible about Diabetes from a medical perspective, the medical "Rules" as laid down in NICE Guidance Note NG28 and around this time I discovered this Forum - which has been absolutely invaluable to me.
Around this time I parted company with my Bucks DSN as well as 2 Bucks Consultants, who I never met but had dreadful phone Consults with - ending with each of them writing nonsense in their post Consult reports.
Fortunately the HPB Surgical Team from the Churchill still had me on their books and got me referred to OCDEM, who were quick to gather me in and who guided me towards a much better place health wise. One of the bits of knowledge the Lead OCDEM Consultant led me towards was finding a clearer understanding about the effect of exercise and activity on blood glucose. OCDEM continues to support me, including arranging my getting Libre 2 replaced by Dexcom G7 after 12 months of Libre2 constantly failing. My G7 has been a further revelation - so consistent and accurate.
Foot on the Floor (FOTF) syndrome and (/ or) Dawn Phenomenon (DP) are well known about in the Diabetes world and bring releases of glucose from the liver's glucose store that affects people in remarkably different ways. We are each of us different in how our bodies respond to daily living and this is highlighted for those of us with Diabetes in how our blood glucose behaves. So a solution found by one person may, or may not, work for you. Some folk are more strongly affected by DP or FOTF than others and either of these 2 phenomena can always occur, sometimes occur and for a lucky few rarely or never occur. But once the BG raise has occurred, and if it is fairly significant, this elevated BG has to be managed. Gary Scheiner, early on in his book, tells his readers that "Diabetes is Complicated, Confusing and Contradictory". This is true for many aspects of our D, but totally exemplified by DP or FOTF.
How to manage these BG surges can range from a pre-emptive correction bolus dose before even getting out of bed, or a correction added to your breakfast pre-bolus dose, or even by aerobic exercise built into your morning routine to mitigate against the surge from DP. Why they occur is complicated, particularly for us as T3cs with absolutely no panc'y.
It might be useful to explain that T3c arises from damage to our pancreas - for various reasons. in fact of the 4 members that
@Anna DUK mentioned in her reply to you, we embrace 3 quite different "shades" of T3c.
@martindt1606 and myself have had total pancreatectomies;
@eggyg arrived here from necrotising pancreatitis; she has been fully insulin dependent for many years using Multiple Daily Injections (MDI) of basal and bolus insulins, as you and I are; @ Busdriver60 arrived here recently after bouts of pancreatitis ending with partial pancreatectomy. As a result of our total pancreatectomies Martin, you and I know for sure that not only have we surrendered any insulin production, but we also have no glucagon hormone, nor digestive enzymes nor the hormone somostatin (which provides a regulatory function between insulin release and glucagon messages). A slight digression: strangely our brain cannot communicate directly with our livers; so when the brain detects that our BG is low it sends a message to our pancreas telling the panc'y to tell our liver to "open" the glucose store - which is done by our panc'y releasing glucagon. Since we have no pancreas at all, our brain has to find and learn a different technique to get that message passed to the liver. This can make, for some T3cs, our D very brittle: quick to crash, slow to respond. But not all pancy'less T3cs (we are each different! D is Complicated, Confusing and Contradictory). I surmise that
@eggyg also has very little remaining pancreatic function, but
@Busdriver60 only needs basal insulin once daily and in quite modest quantities. He has been managing with Creon but no bolus insulin, so perhaps (possibly) he is more akin to T2 and still producing some homegrown insulin.
In answer to managing daily BG there are 42 factors defined so far that can affect anyone's BG. Carbs eaten, insulin taken leap out as 2 factors, exercise and activity add to the nos, but weather, time of day, other ailments, stress all can play a part. Consequently on a fair day only some of those 42 factors are intervening and we get used to mentally accounting for BG factors, using trial and learning to develop personal BG management techniques. On a less fair day more factors intervene and the BG nanagement process becomes more of an art than a science. However the huge help we have today is CGM. Without that, much of your day was trying to decide if your body was sending you warning signs that you recognised before going low and into a hypo. With CGM alerts you can get sufficent indication that your BG is changing and take your own corrective response in a timely manner.
Briefly, about pumps. NICE made significant revisions to their Guidance Notes in mid 2022, improving the availability of CGM. During 2024 a big initiative was agreed to by NICE (thus Guidance to the NHS Trusts) about providing Hybrid Closed Loop (HCL) pumping [the pump takes direction from CGM about how much insulin is needed]. So there is a 5 year plan being rolled out in England to provide more HCL. This is positive news, but with a certain amount of sting in the tail of that good news. The current critical shortage in OCDEM is skilled nursing staff to teach patients about pumping and HCL, closely followed by funding for this newly emerging "Guidance" to Trusts. After a face to face Consult 3 weeks ago at OCDEM, I had gone hoping to hear that I was gently getting near to being added to the list for a pump in '25, only to have my "Expectations Managed"; an honest guess then by my Consultant was that it was going to take time to get both the funding and the necessary staff in place during 2025. Nothing was being promised at present to anyone, no matter how strong or exceptional my personal case might be. So I have to be realistic for now and tolerate a long wait for even a hint of a pump in the future.
Sorry this is so long, I'm tagging this to include
@Wendal who is a regular T3c contributor on the Forum. Although T3c is way less than 1% of all Diabetes diagnoses, there are almost 30 x T3cs moderately active in the Forum. Most of the T3cs here are in effect as if T1, ie very insulin dependent, but without the autoimmune circumstances that have caused their particular T1 diagnosis.This is a good and safe place for help and support, with literally centuries of cumulative D experience. So do ask questions - no questions are stupid and invariably there is someone who can point you towards a solution for a problem you might be encountering. Be aware that some D "tricks and tips" that work for T2s have no equivalence for us, as insulin dependent folk.
Are you feeling reasonably healed surgically? Are you carb counting yet? Has OCDEM talked about getting you on A DAFNE course?
