Diagnosing Pancreatitis Can Be Difficult Because …

diagnosing pancreatitis

Diagnosing pancreatitis (either acute or chronic) should not be so difficult. You shouldn’t have to suffer while your doctor looks at you like a bull with a bad case of hemorrhoids (happened to me more than once).  If you’re a doctor and reading this post and you get offended tough. Chances are you have a hard time diagnosing pancreatitis, whether  acute or chronic, and because of that your patients suffer needlessly. I was in that category and I don’t forgive easily when someone causes me damage (which an inept doctor can do) nor do I easily forget for “To ERR is human, to FORGIVE divine. HOWEVER, neither is Marine Corps Policy.” – author unknown

I was dumbfounded when I read that approximately 210,000 people are diagnosed with pancreatitis yearly [1]. 210,000! And then I can’t help but think or ask, based upon my personal experience “how many times did they have to visit the ER or doctor to obtain that diagnosis?” How many of those 210,000 are damaged needlessly and then develope chronic pancreatitis simply because they had doctors like I had? I have not been able to determine that number.

Acute Pancreatitis Diagnosis At Autopsy

pancreatitis diagnosed at autopsy

How many people die without diagnosis where cause of death is found to be acute pancreatitis at autopsy?

In Germany (2000 – 2004) this was found to be true: “The reported incidence of acute pancreatitis diagnosed first at clinicopathologic autopsy ranges between 30% and 42%. To better describe outpatient fatalities due to acute pancreatitis that present as sudden, unexpected death, we retrospectively reviewed the autopsy files at the Institute of Legal Medicine, University of Hamburg, Germany, from 2000-2004. Individual cases were analyzed for sex, age, race, circumstances of death, social background of the deceased and previous medical history, seasonal occurrence of the disease, blood alcohol concentration at the time of death, body mass index, autopsy findings, histopathology, and etiology of acute pancreatitis. Among the 6178 autopsies carried out during the 5-year period evaluated, there were 27 cases of acute pancreatitis that presented as sudden, unexpected death. In all cases, the diagnosis was first made at autopsy[2].”

Glasgow is the largest city in Scotland. A review of all deaths from acute pancreatitis recorded at Glasgow Royal Infirmary between 1974 and 1984 identified 126 patients, 53 (42%) of whom had pancreatitis first diagnosed at necropsy (autopsy) [3].

One Turkish study describes and discusses the autopsy results for 12 sudden-death cases in which acute hemorrhagic pancreatitis was the cause of death. This study reviewed 3,305 autopsies performed between 1991 and 2001 at Turkey’s Council of Forensic Medicine. Of these, 12 cases (0.36 percent) involved sudden death due to acute hemorrhagic pancreatitis without symptoms [4].

I have NOT been able to locate statistics for the United States. If I am able to locate any data I’ll update this post.

WHY Is It So Difficult For Doctors When Diagnosing Pancreatitis?

Pancreatitis can be difficult to diagnose for several reasons which include:

1- Doctors have difficulty diagnosing pancreatitis because they just don’t listen. They are in to big a hurry to see their next patient, are thinking about their golf game or the hot nurse Hot Lips or simply doesn’t care because it isn’t him or her who is in agony.

2- Another reason is that they THINK they are omnipotent, know your body, its symptoms (what you are experiencing) a lot better than you do and if you beg to differ they simply chalk you up as a drug addict looking for a fix or a lonely hypochondriac in need of attention.

3 – Another reason is the medical profession has made it confusing and DANGEROUS (for the patient because time is of the essence to lessen damage) with different scoring criteria for both acute ( Ranson, APACHE II) and chronic pancreatitis. I would hazard to guess that most have never even heard of “minimal change chronic pancreatitis.” Even if they have there is still some criteria necessary for a diagnosis and …

Instead of using common sense, allowing that the patient is having recurrent AP and/or mild abdominal pain with nausea, vomiting, and other signs such as foul smelling, puking-on-doctor's-shoes-diagnosing pancreatitisfloating stools which indicate malabsorption due to a damaged pancreas that may not be producing enough digestive enzymes, that there is a REASON the patient is still sick they instead just roll it all off and tell the patient they are just peachy keen and nothing is wrong while the patient pukes on their shoes.

4- Many doctors have difficulty diagnosing anything unless it slaps them in the face (CT scan showing horrendous damage due to necrotizing pancreatitis or cysts the size of watermelons). Horrendous damage, internal bleeding and/or organ failure help them arrive at a diagnosis of pancreatitis but if you don’t have those types of complications yet, and trust me on this, you don’t want those easy to read signs but …

You have moderate to severe gastrointestinal symptoms and have yet to have a doctor give you a correct, common sense diagnosis make sure you persevere in finding an Internal Medicine doctor or a Gastroenterologist who received his/her degree from somewhere other than a Cracker Jack box, is able to recall what they learned in medical school and use common sense along with the modern diagnostic tools. I know I am asking a lot because …

Finding a good doctor with great diagnostic skills is like locating a huge placer gold deposit but …

Here’s the point of the whole diagnosing pancreatitis deal:

As far as I can find the ONLY condition with the tell-tale signs of SEVERE  abdominal pain radiating to the back, with nausea and vomiting is acute pancreatitis. Go ahead Google this phrase without the quotation marks: “severe abdominal pain radiating to back, nausea, vomiting” and the first condition that pops up is what?

Acute Pancreatitis

diagnosing-pancreatitis
Most doctors I met while suffering I am certain received their M.D’s from CrackerJack U

If you use the WebMD Symptom Checker (which does NOT ask all the right questions such as pain radiating to back) pancreatitis comes in number 4 and gallstones gets top billing but at least pancreatitis is a potential suspect. So if someone can take a couple of minutes and plug some info into a symptom checker, use a key word search phrase on Google that contains the exact symptoms and come up with pancreatitis why can’t a doctor do the same IF they have doubts or need some help in pointing their brain in the right direction? Ego or the “dumber than barber hair” syndrome?

The patient “leaning forward” is another clue (mentioned in most descriptions of acute pancreatitis symptoms). For some reason leaning forward helps to ease the pain (I’m laughing cuz it doesn’t help much) a tad or maybe it’s a “knee-jerk” reaction with acute pancreatitis patients with severe pain because when it did happen with me I did it EVERY time yet …

Could any one of the ER physicians put the clues together?

NOT ONE!

They were ALL dumber than a bag of barber hair. Anyway back to …

Diagnosing Pancreatitis

er-doctor-pancreatitisWhen the Hippocratic oath states: “to abstain from doing harm” why would any physician with a brain sit on his/her thumbs waiting for some scoring criteria, especially if the patient presents with text-book symptoms including elevated amylase and lipase? Time is of the essence to prevent more pancreas damage and …

IF the physician has enough on the ball to recognize the symptoms of acute pancreatitis, with p-amylase, lipase and trypsin (if available) testing giving the confirmation of acute pancreatitis within hours of onset along with the patients declaration of symptoms, I find it totally ludicrous to wait 48 for scoring criteria before addressing the inflammation but then …

ER physicians do NOT address the inflammation properly anyway. The ONLY thing they do initially that is worth spit is to make the patient go NPO (nothing by mouth). Instead of addressing the inflammation with an anti-inflammatory such as Ibuprofen they give the patient morphine or some morphine derivative which can actually cause MORE inflammation in the pancreas but …

At least you’d know that you had a decent physician for him or her to even get that far! I was in the ER seven, SEVEN (7) times with my worst acute attacks before being diagnosed (outside the ER). Not ONE ER physician had brains enough to check my amylase and lipase levels after four hours of onset. They did ONE blood test (CBC) in all 7 case interviews and NOTHING else as far as I know. Since I was there and coherent I do know.

One time I was given a shot of demerol (meperidine) for pain. It did NOTHING which should have been a HUGE clue which indicated the need for additional testing but what did the doctor say? “Come back if your condition becomes worse.” IF I hadn’t have felt like death warmed over that would have been funny and …

What’s even more disgusting is that 5 of those ER visits were to the same ER! They should have had a patient file, which if anyone would have had the brains to look, may have given a clue that there was definitely something wrong that needed more attention other than another CBC.

If you have been diagnosed I hope you had a better experience in regards to your ER physician diagnosing pancreatitis than me and …

I wish you good luck in your recovery and healing process.

 References:

1 – Pancreatitis – NIDDK scientists and other experts.
The NIDDK would like to thank:
David C. Whitcomb, M.D., University of Pittsburgh

2 – Acute pancreatitis presenting as sudden, unexpected death: an autopsy-based study of 27 cases.
Tsokos M1, Braun C. 1Institute of Legal Medicine and Forensic Sciences, Berlin, Germany. mtsokos@web.de

3 – Fatal acute pancreatitis
C WILSON, C W IMRIE, AND D C CARTER
From the Division and University Department of Surgery, Royal Infirmary, Glasgow

4 – Diagnostic Dilemma of Sudden Deaths Due to Acute Hemorrhagic Pancreatitis
Author(s): Ali R. Tumer M.D. ; Cenap Dener M.D.
Journal: Journal of Forensic Sciences Volume:52 Issue:1 Dated:January 2007 Pages:180 to 182
Date Published: 01/2007

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This article has 17 Comments

  1. I’m curious if abdominal pain, nausea and no change in pancreatic enzymes can still be pancreatitis? In reference to the nausea, I absolutely will do anything not puke! My doctors have the common sense to get me anti nausea meds to take as needed. Even though they don’t really know what’s going on other than I feel like s*** and O oh, and by the way they think I have SOD. (I’VE HAD 3 SPHONCHTRTOTOMYS, for high pressures.

    1. Hi Anne – sorry to hear you have SOD. It can be EXTREMELY painful. It also causes acute pancreatitis. And from what I have read sphincterotomy is often a useless, dangerous procedure. So lucky you! I’m sorry, I’m not insensitive just trying to joke about what I know is a real rotten deal. It is EXTREMELY rare to have acute pancreatitis without enzyme levels increasing. Chronic pancreatitis can often present without increases in lipase but AP usally (99.7%) doesn’t. It would be a very rare deal to have AP without an increase in lipase UNLESS you have a completely blown out pancreas which simply doesn’t produce any enzymes at all anymore (seen in long-term CP). BUT then, I’m guessing, it would be difficult to have AP as well because there wouldn’t be any enzymes to devour your pancreas.

  2. Hi there. I was diagnosed with acute pancreatitis by my regular doctor. I saw a gastroenterologist today and guess what? She told me that they are going to have that diagnose taken out of my chart. What?! She told me rest assured that it is not your pancreas. Excuse me than why was I in the ER last week….. because of a gas attack? Why was lipase so high. Okay um I have pain radiating from front to back. I am still having trouble eating solid foods. Whatever! How frustrating. Oh by the way I found an endoscopy from 2007 stating I had the same symptoms back then, wow! I was trying to lose weight 3 months ago so I started a diet that was high in “healthy fats.” That’s what happened. My bad pancreas could not handle those fats. The doctor said that diet had a reflection on my gas not pancreas!

    Paul, I am going to do what you have suggested, period. I am going to protect my pancreas from any further damage. I am going to take the supplements, drink lots of water and once I can eat again without pain, eat a vegan diet.

    One question, if the ultrasound says no gallstones do you believe it’s safe to take curcumin? You might not be able to answer question but I thought I’d ask anyway.

    Again, thank you Paul so much for all your information! Thanks for listening. I just had to tell someone about my frustration who would listen and understand.

    1. Hi Andrea – dang, how frustrating! People get on me for being less than enamored with doctors but to me most are simply educated idiots. I could tell you story after story to back my opinion but I don’t want to bore you and you are finding out first hand. It’s sad. It’s almost like they deliberately add 2+2 and instead of arriving at the correct answer, 4, they think 22 is more appropriate. You are welcome to the info. I hope it helps you. By the way how high was your lipase?

      1. Hi Paul,

        I’ve read a lot of your articles and the comments so I am sure it’s only the tip of the iceberg of what stories you have heard.

        My lipase was 394. Not extremely high but enough pain to end up in the ER. The gastroenterologist said that my level is normal. She said that she has seen 3 times higher. Well, I certainly don’t ever want it to get that high. I know I found you at the right time before it got really bad. I found a endoscopy report done on me in 2007. Same symptoms including that tell tale sign of pain in the middle radiating to my back. So to my knowledge this has been happening since that time.

        Now I’m just trying to get my diet in order. Juicing has been great by keeping my energy up and by allowing me to get the nutrients I need. I still have pain daily but for the most part getting better everyday.

        I had a CT scan done. I have a lesion on my colon so I am looking at a colonoscopy and endoscopy next. I have a lot of faith that it will be okay. The gastroenterologist has me on dexilant for acid issues. I hate taking medicine but thought I better.

        Anyway, I’m rambling. Thank you again.

        1. Andrea, if you can print this case study take it to your doc (GI) and show her that lipase doesn’t ALWAYS rise during acute pancreatitis. It IS RARE when lipase does not rise during AP but if there is one case, there are more. Also make sure she sees this article as well especially this quoted section: “The severity of acute pancreatitis is independent of the elevation in serum amylase/lipase level (⩽3n or >3n) on admission. Patients with only a slight increase can also have or develop severe acute pancreatitis. Patients with ⩽3n elevated enzyme levels on admission represent a substantial group that treatment studies have frequently overlooked. This is especially true for patients with alcohol induced acute pancreatitis whose amylase levels are lower than in other aetiological groups” which can be found under the “Conclusions” section of the article.

          Doctors never enjoy being challenged by someone who has never been to med school but they need to learn that they aren’t always right. In fact, I have found (personal experience) they are more often wrong than right.

          I hope you continue to find relief and healing Andrea. 🙂

  3. I had a serious episode of pancreatitis this past June. It was my first experience with this hell on earth even after being diagnosed with sphincter of oddi dysfunction 13 years ago. I have one of the world’s leading specialists in SOD as a physician. The problem is he’s in Indianapolis, Indiana and I live in southwest Ohio. Fortunately the hospital I was rushed to was on the ball. They were even quick to admit they were in over their heads and let my GI in Indy call the shots. I found your site as soon as I was discharged and began following your diet and suggestions. After a couple months I had an ERCP in Indy with my specialist and to both of our surprise, everything looked fantastic. It showed a very health, undamaged, unscarred pancreas and CT backs that up. My inflammation was so high, they certainly didn’t expect such good results that quickly. My specialist will continue to follow up with me but we’re very pleased. My husband thought he was losing me that day. They think a virus I had caught from one of my children went crazy and caused not only the inflammation of the pancreas but the stomach, duodenum, liver and tracked down into pelvic cavity. I was used to pain from my SOD which amounted to a bad bile duct, which a portion of was removed and the rest was bypassed. But the surgery fixed that and nothing compares to the pain of pancreatitis. So I decided to follow your advice. I want to thank you so much.

    1. Hi Shannon – you’re welcome. I am glad to hear the info has been useful to you. Thanks for the kind words 🙂 And you are extremely lucky to have a good doc. Unfortunately many of us have not had that luxury.

  4. I wanted to add some food for thought. I stayed in a previous post I see an SOD specialist at Indiana university hospital. They’re world leaders in research and treatment. Their maximum lipase level is 59. That’s it, just 59. Anything over that is acute pancreatitis so they catch it early usually and treat it aggressively. He did tell me that if a patient presented with a lipase of 30 or anything below 59 but had severe pain to their back with nausea and/or vomiting, he would consider that pancreatitis as well. Labs are not standard. There’s a hospital 5 minutes from me who will send you home and say it’s not pancreatitis according to their lab unless lipase is over 220. Another hospital 45 minutes away has a lab who’s high maximum is 485. It’s not pancreatitis unless it’s above that. Can anyone explain this to me? A nurse at IU hospital told me that this is why when they get patients from other states and countries, their pancreases are in such bad shape. If IU (I believe Minnesota might be one of the other really good ones) specializes in this, why wouldn’t other labs be the same. Why isn’t there an accoss the board standard? I am blessed I am armed with this information and if ever I were to have another AP episode, Heaven forbid, I can direct my treatment and if the ER doc doesn’t like that, my specialist has requested to be contacted. (I’m lucky to have worked in our local ER and they know me and that I’m not a narc seeker) I am frustrated with the lack of knowledge on this subject.

    1. Yep, the average lab standard is 5 times above high normal and high normal is different from lab to lab and for different age groups of patients.

      Adults age 60 and younger:
      10-140 units per liter (U/L) or 0.17-2.3 microkatals/liter (mckat/L)

      Adults older than age 60:
      18-180 units per liter (U/L) or 0.30-3.0 mckat/L

      So the average ER doc could/may/would consider the patient fine unless their lipase levels exceeded 700 and 900 respectively. I find this to be somewhat ludicrous, especially if the patient has classic symptoms.

      Again, you are extremely lucky to have an astute doc.

      1. Better doctors and labs now know and agree that the actual reference range for lipase is 0-50 U/L, although this is method-dependent. Additionally most agree that 3x upper normal identifies acute pancreatitis. So 3 x 50 = 150. This makes more sense.

  5. Hi Paul –

    I had my gallbladder taken out two years ago along with a diagnosis of AP. Two years later I am having extreme pain under my left rib cage that radiates to my back. I went to the ER. Like most of your comments – the doctors just put me on paid medication and sent me home. I also have a hiatal hernia and gastritis – so the doctors believe this is what I have. I am scared that I have AP again which I know is not uncommon after gallbladder removal (and because I had it before!).

    I am wondering…if I take the supplements because this is what I think I have – can it do any harm? If I feel better – than obviously it is what I think it is. If I don’t – than maybe I will believe my doctors for once…maybe.

    Thanks for our information on this site. Just ready to feel better!
    Bri

    1. Hi Bri – Once one has AP it is usually hard to forget the symptoms and easy to recognize if it happens again. You should go by your gut feeling. You know what your AP attack was like if this is identical or so close it is hard to miss then yes supplemnts should help. Couple the supplements (Grape seed extract and Vit C) with Ibuprofen (800 mgs). FAST. NO Food. Go to the nearest GOOD ER. Once your pain is resolved and you are symptom free due to supplents, ibuprofen and fasting a low fat diet coupled with the supplements should realize benefit soon BUT – IF you think you are suffering from AP again you should check in to the nearest GOOD ER. HOWEVER …

      I am guessing you had your gallbladder out because you had stones which caused the initial AP? Since I’ve never met a guy with the name Bri I’m also guessing you are female? So, you have had GB stones, have had your GB removed, are female … you could be experiencing an SO spasm (SOD) and sphincter of oddi dysfunction – which – often causes acute pancreatitis. I’m NOT saying you are experiencing SOD I’m saying it’s possible. For some reason women who have had stones and GB removal are at increased risk of SOD. Anyway …

      IF you think you have AP go to the ER.

      Once out of the ER there are steps you can take to heal faster and stay well. All that stuff can be found on this site, somewhere. I hope you feel better soon. 🙂

  6. OMG I had the same thing happen to me but I went to ER 3 times before they admitted me. They treated me like shit. I think they thought I was drug searching. I had been vomiting for days and hadn’t slept due to pain. Doctor told me pain meds don’t work for stomach pain. What medical school did he go to!! I didn’t ask for meds. I didn’t want to put anything in my stomach. I couldn’t even keep down water!! Second time I went they made me sit in ER waiting room for hours at least 20 people bypassed me. They finally called me when I was the only one left in the waiting room. I was in agony. Ran some tests then gave me some cocktail that had lidocaine in it to drink. It worked for about 12hrs. I was back in ER the next day. They admitted me because I was so dehydrated and my potassium was dangerously low. I was in the hospital for 3 days. Finally my brother in law came to see me and he is a doctor. He ordered more tests that hadn’t been run and low and behold they found out I had pancreatitis. I was so upset because I totally felt no one believed I was sick.

  7. yes, doctors now days forgot what they learned in school, they just get by by doing as little as possible and think they are saving the insurance money, if they would just find out the cause of the issue it would save alot more money, I am having to go outside of kaiser to get any kind of decent care and am finding alot of docs are like this now, we pretty much have to diagnose ourselves these day and the docs sure aren’t doing it. I have had 2 attacks, acute and no one seems to know what it is, upper left abdominal pain, starting with severe nausea, then into pain from 6-6 days I am in bed and unable to do anything. and need help just to go to the bathroom. The ER doc spun his fingers around hid head telling me I was crazy, faking, drug seeking and it was insane, I was finally admitted for 6 days, and released a couple days to soon. Going to the ER these days is like taking a trip to the twilight zone..I end up many times having to tell the docs what to do, they seem to not know, very annoying. SO I am still trying to figure out what is wrong with me and seeing docs at John Hopkins….I sure hope I can find out, but it sure feels like this, acute pancreatitis, my calcium is also elevated and it can cause this too…I want to get my surgery as soon as possible and the only time they have is not till Sept …ugh !!

    1. Hi Jeanette – John Hopkins has some really good docs so hopefully they will be able to diagnose you correctly but what surgery are you planning to have? At this point, not even a diagnosis, what surgery could possibly be a good idea?

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