Hello, that is an unexpected late reply. I appreciate this a lot.
How did I test? Well, I had a glucose meter but hadn't used it in a while. I felt worse every day and then took it out again and I had a very high reading and a lot of usual symptoms of ketoacidosis that I could no longer allow my GP to be ignored. The day after I was admitted to a specialized doctor (they most often are not endocrinologists here, they have special training for diabetes, endocrinologist or not), they did blood tests and so on and then the evidence was clear.
regular high readings
Yes, but my GP just dismissed them because she did not believe it was coming from my pancreas, no longer being a teenager or a child. She ignored MRI results etc. that clearly shows a dwindling pancreas because in her eyes that person can't have anything but Type 2. She told me to "no longer eat carbs, that's all".
Or were there other things that let you down that path?
Really, the usual ketoacidosis symptoms having gotten so bad my GP could no longer dismiss them.
I have suspected chronic pancreatitis and am currently taking Creon enzymes. Are you experiencing any pain?
Pain comes in different forms and surely the pancreas is one of the most painful organs if in acute pancreatitis. Like so many patients before me, after many years the direct pancreas pain faded. I guess the direct pancreas pain, for lack of better words, is what you're hinting at - and that's the kind of pain that often fades over time for many patients. You probably couldn't live with that kind of pain without morphine, I guess.
Creon enzymes are the best but we can't get the high dosage any longer, that's very sad. In some countries there are only Creon enzymes, but we have other brands, too. All the other brands offer much large micro pellets inside and the Creons are considered to work the best. We also have enzymes made out of fungus but it's very unclear how to get the dosage right with those. Also, doctors are not prescribing them here and they're too expensive out of pocket.
your post history about struggling with controlling your insulin levels, have you read about brittle diabete
Well, I've heard of brittle diabetes, yes. But I guess all in all my control is very good but I am maybe a little Obsessive–compulsive about my control. I guess everybody has ups and downs but with a Hba1c down to 5.3% I think my control is not that bad.
Apart from that, I know that
it will be the hardest diabetes to manage. I'm in an association for volunteers for pancreatic diseases which participates and studies and courses and more and they keep us informed about those problems being the most severe.
Quite obviously my pancreatitis is really chronic and therefore I will expect both insulin and glucagon cells to die over time. I don't know how long it will take, hopefully it will be years, not only months. Basically those patients are the most brittle you can get due to the total lack of glucagon. The best I can do is to not build up insulin resistance on top of everything else, I guess.
Have you considered or are you a good candidate for an insulin pump
Right now: not really. I've already tried to convince my doc. If my diabetes becomes brittle, I will get one very quickly, I guess. There is an issue with abdomen tissue after surgeries that might enable me to get a pump more quickly, though. And maybe if, via diet and exercise, if I get below 20 I.E. of insulin per day that by law in my country is an indicator for a pump prescription. I'm trying that actually and I might manage going lower than 20 I.E. by the end of the year hopefully.
Some people don't want an insulin pump. I do want one. I don't know yet if I want a tubeless (Omnipod) or one with a tube.
Seems your diagnosis is pretty new to you, so all the best of luck. Remember to take your Creons all the time and try to read up on dosage because there is evidence that a lot of patients would need a lot more Creon that doctors would have thought 15 years ago.