My story is somewhat a strange one. Just over 6 years ago I was diagnosed with Auto-Immune Pancreatitis (AIP). For those of you unfamiliar with this, it is a relatively rare auto-immune condition where ones own body attacks the pancreas. After misdiagnoses of pancreatic cancer and non-Hodgkins lymphoma, doctors finally figured it out and following a course of steroid treatment, the 'disease' went away. It may come back at any time, or it may never resurface.
Prior to the AIP, my blood sugar was always relatively low, in the 3-4 range. Now, post AIP, my blood sugar has always hovered in and around the 6 range (high 5's, low 6's).
Just to be clear, AIP and LADA are not the same thing. I have done the research on this. In AIP, the pancreas becomes so inflamed that it typically constricts the bile duct, causing the patient to exhibit pancreatic cancer symptoms, such as jaundice, etc. AIP can be controlled by a short course of prednisone (steroid) or other immune suppressants, whereas my understanding is LADA cannot.
Doctors and specialists cannot seem to tell me whether the AIP is the reason, but to me it seems logical (the AIP probably damaged my pancreas as my body 'attacked' itself) and thus my pancreas may not function properly anymore. I have done the glucose challenge test, and it was fine (i.e., my blood sugar levels went down).
So, I guess what I am wondering is if anyone has either had a similar experience with AIP, or knows someone who has? I would love to talk with them to understand if they have had a similar experience, or what their doctors are telling them?
I had mild pancreatitis when I was first diagnosed. I figured an autoimmune response would cause some inflamation, I never had it recur. I still produce decent levels of Amylase and Lipase, but I make virtually no Insulin.
Do you need to take Amylin or some other Amylase replacement?
No, my amylase is fine (44, within the reference range of 27-110). My lipase is low (4 with a reference range of 13-80). However, my Lipase was 17 in 2009. I had an insulin test a few years ago and it was fine as well. So, all the more perplexing why my recent HbA1c is 0.062, and my fasting BGL is 6.1 (this was 6.3 in 2009).
Well then it looks like your pancreas is still producing those 2 hormones and it is islet cell destruction that is the main trouble, just like most of us. I know many Diabetics that have their Amyl and Lipase decrease over time.
Mine are totally normal too, but when you have a bout of pancreatitis, those are the first things to show increase. At diagnosis my Amylase was 300 and my lipase was 500. They told me that it was not terribly high, but I felt awful. I don't know if it was DKA or pancreatitis, I had both at diagnosis.
Mine cleared up quickly and both were at normal levels within a month. Also my C- peptide was just about zero.
25 years later and I'm nearly exactly the same as I was, as far as pancreas hormones that is.
I got wrinkles and grey hair starting though, I'm not sure if that is a diabetic complication though.