Hello Dodie
@Dodie and welcome to a select club.
I had pancreatic cancer and in Feb 20 I surrendered my pancreas during a Whipple procedure and gained instant diabetes. I, like you, found it all very challenging: post op recovery, then adjuvant chemo (just in case ....) and it was only late Oct 20 that I started to even think clearly.
BUT, there is some light at the end of this tunnel. Now, 2 yrs on I'm still learning, yet feel much more in control than previously. It would help if at this stage you could tell us a little more, for a starter:
Why was your pancreas removed? Mine was because of cancer, but others often as a result of increasingly difficult pancreatitis.
What insulins are you taking for your basal and bolus? I was started on Levermir 2x daily for my basal and NovoRapid 3x daily for my bolus, with a very rare corrective dose when really high.
Are you carb counting or just following a predefined formula given to you for insulin dosing? I started carb counting in late Oct 20 and that became a great help in better management of my Diabetes Mellis (DM).
Do you have Libre 2 or just dependent on finger pricking to find out your BG? If you do have Libre 2 have you read some of the observations on this site about the good and not so good aspects of Libre 2? If you are only finger pricking at what frequency? I was given Libre 2 in Feb 20, just after the improved availability on the NHS. A further huge help in gaining control; but I'm pleased that I had a year doing the traditional method of finger pricking only, since when Libre 2 glitches I'm relaxed about managing without it. I did my apprenticeship! I now have an extra app called Diabox on my phone which gives me a Continuous Glucose Monitoring (CGM) system - but that's for another time.
What reference material do you have access to, apart from this site - which is a great place to start? Have you found the Learning zone here at the Red tag at the top of this page?
Have you found the book by Gary Scheiner "Think Like a Pancreas" ? He writes unashamedly for insulin dependant diabetics and despite being in America takes the trouble to convert US numbers into European units. I found this book exceedingly helpful.
Are you under a Hospital based Diabetes Clinic and do you have the name and contact details of a Diabetes Specialised Nurse (DSN) who you can reach out to for technical queries? This is not the Nurse who might deal with diabetes patients at your GP's Surgery; it is highly unlikely that a GP surgery Nurse will know enough to help you with T3c aspects; almost all of their patients are Type 2s with very different problems. It is essential that as a T3c you are "nestled" within a Hospital Diabetes Specialist Team; in theory this will include a named Endocrinologist, but in practice at this stage you need a DSN who can interpret your fortnightly logbook readings and adjust you're insulin dosing regime. You will (should) get an Endo consult at about the 6 month point after your op; but I guess the timings are vulnerable to Covid backlogs. But if you have a DSN and there is something important to be reviewed that DSN can make that happen for you.
I completely understand your worry about going hypo. It's not nice, but it is manageable and I doubt there is even one insulin dependent diabetic who has not been there. But for now staying 6 or above is fine, as you get the measure of things and gain confidence in what you are doing.
I didn't have any unsteadiness problems, but if this is a DM side effect there will be someone on this forum who can comment. I did have some heart issues and before my op in Feb 20 I had a rigorous review to confirm I was fit for surgery. One of the many factors that can affect Blood Glucose is stress - all types, ie stress from problems and worries, emotional stress and medical stress. Stress plays havoc with your BG and I now try to do everything I can to relax (easy said, but ..) and keep calm even when my BG is all over the place. I even did some mindfulness investigation, as a technique to keep myself calm and less stressed.
Regarding the rebounds into hyper zone - this does happen a lot; not least because with no pancreas you - personally - have to manage most aspects of: your digestion; your carb intake; your insulin dosing; and your glucose response. You don't even have the hormone that receives instructions from your brain and then tells your liver to open the glucose store when you have too much insulin in your blood stream. So it has taken me a while to gain some control and reduce the "yo-yo" effect with my BG. One initial piece of advice is to try not to over-react. When my BG is falling at c.6 I eat a small (non-chocolate) biscuit: perhaps 1x hobnob =9 gms CHO, or 1x Nairns biscuit =6gms CHO, or similar; at this stage not a jelly baby. At c.5 and falling I might take c.10-15 gms CHO (still no chocolate - which slows down the digestive process) and I keep the JBs for below 4.5 - ie Urgent response. I needed to experiment, gently and slowly, to find what works for me.
I'm assuming you are taking Creon and I will take 1x Creon capsule with each snack. I had digestive problems for almost 2 yrs, which happily seem now to have receded. However, the consequence was that although I was rigorously carb counting from Nov 20, for almost a year I wasn't fully absorbing what I was eating; so my carb count was generally correct but I was frequently overdosing with insulin!
I'll stop here for now. Please ask any question that occurs to you, there will be someone on this forum who can offer a response. Some of your challenges are more specific to Type 3c, but by no means all. If you feel OK about answering my barrage of questions to you, that would help us understand where you have got to so far and allow us to provide more specific answers.
Right now, this is really daunting - or it certainly was for me; diabetes is complicated, confusing and contradictory and a few months in I still found it frightening. That fear has rescinded as I learnt more about what was going on: "Knowledge dispels Fear".
Good luck.
