What is considered EPI or CP in your country, in terms of elastase-results?
So, in my country, medically: anything above 200 is fine.
My first test about 6-8 years ago, my elastase was 386. I googled what it was supposed to be: 200. So I replied to my Doc: "Well, to my understanding, that's perfect..?"
He replied: "Yes, perfect!"
My symptoms didn't stop, and I had a painful post-pancreatic-pseudo-cyst that burst in both 2021/22 and then now in March/April/May 2026.
I learned first from this group that a 386 is far from perfect. To my understanding, a lot of countries use above 500 or even above 600 "perfect" and anything less is considered mild chronic (or EPI?) and that less than 200 means severe.
It does state in small writing on our guidelines tho: over 200 does not rule out mild or moderate. (But, we just don't care until it's under 200 I guess, lol🤷🏼♀️)
Luckily, I do have a Doctor that cares atm. He is inches from retiring tho, so I am scared/fearful about having to start advocating real hard to be heard, because "I don't have EPI or CP, because my results are perfect" or something like that.
I even asked my Doctor, after having many bouts over the last few years: I get that we don't do anything unless under 200, but it seems like a lot of countries in the rest of the world operates on 5-600 for it to be "perfect".
He nodded and replied: Yes, that's true, above 5-600 is usually considered normal elsewhere, but more like..
Then I filled in while he was looking for the words: like, under 200 is when it's serious, severe CP or EPI or something?
He said: yeah, we could say that. I've had many patients over the years with pancreatitis, and one thing I have learned is that above 200 does not mean no treatment (he still put me on Creon 6 months ago, after I asked) or that your pancreas is working perfectly. And that lipase and amylase is not reliable at all, but I still wanna take some bloodtests and include them: when they are high, I rely on them, but if low, then I rely on you and your other symptoms and pain — because catching them elevated can be hard, with a small time window, and often when they stay elevated it is already dangerous.
He also mentioned having a patient dying pretty early of pancreatitis, so he seemed to have ... idk, like a lot of "respect" for the pancreas and how what I tell him weighs more than what any bloodtests says. And I am so thankful for that! (But, also scared for when he retires).
So rn, I am trying to do almost everything that can be needed for my future. Pretty sure I do not have EPI or CP as a official diagnosis yet, since I am over 200.
I am going to be taking a new elastase after the summer, and prob some type of imaging (because of the cyst that burst a couple of months ago).
Anything else I should remember to get a refferral to or get done while I have my current Doctor?
Worth mentioning that this same Doctor was the only colleague of my old Doc that is already retired. So, they were both there telling me that my pain (gallstone and eventually acute pancreatitis with beginning multi-organ-failure) was because of me being so skinny(wtf?), constipation, my period (even tho I had only had ONE SINGLE PERIOD CRAMP in my entire life before and told them it wasn't), gluten, all kinds of stuff. Not one single imaging over the 2 years. Until I was peeing pure blood, jaundice, acute pancreatitis and having beginning multi-organ-failure.
Then, about a week into being emergency-admitted at the hospital, both me and the Docs got told by the hospital that I prob wouldn’t make it over the night.
So, the fact that this man takes me so seriously in an instant, because I almost lost my life once before while crying for help and not being taken seriously is something I am scared to lose — and then possibly having to experince it again.
When my last Doc retired, I had to get a new one replacing him, because my current Doctor's list was full: I sat there with both kidney stones from the huge amounts of Vit D that this new doc prescribed me (side-effect) and this man wanted me to fill out a 15-page form about Fibromyalgia. I could barely breathe, think or talk from the intense pain atm, I said: I can't rn, I can not. I am here for kidney stones, do you think my pain right here is from kidney stones or Fibromyalgia?
He said: "No, that's kidney stones."
Well, then can we maybe focus on that? Literally what my appointment is for; in this exact moment, all due respect, I could not care less if I have Fibromyalgia or not — because it is not helpful to me rn.
Then he continued giving me all sorts of other meds, because he didn't want to prescribe pain killers (with KIDNEY STONES and a diagnosed pseudo-cyst bursting!!!). All the shit he prescribed me only gave me more problems: migraine, ulcer, even prescribed me some shit that has ACUTE PANCREATITIS as a SIDE-EFFECT! He refused to give me pain meds "until you try this".
I lied, I picked up the prescribtion and said I was having major issues on day 2, vomiting and symptoms from pancreas worse. That got me ONE prescribtion and then it was a fight every single week (kidney stones lasted for almost 2 years, multiple ER and hospitals, bladder almost bursted and etc.)
This became longer than I expected, was just going to ask about elastase, but it seems I had a lot more questions when I first started writing.
Thanks for reading🤍 And I appreciate any advice or insights given✨️
Side questions: The tumor marker, P-CEA, it was a bit elevated on me (6, for my age is supposed to be less than 3, but above 60yo or something then it can be "normal" with a 7 or when your body has been through something; like my recent bout) , but from my understanding it's the P-19-9 that is for the pancreas? So, I need to do a follow up on the P-CEA but, also ask about the P-19-9; does anyone have any experience or knowledge about this?
He checked 2 markers, but the other one wasn't P-19-9. The other one was fine tho.
Kinda scared to post now, please don't scare me😅
TL;DR: What is considered normal/perfect elastase in your country?