Re: elevated enzymes

[Guest guest]

Hello all,

I just wanted to add a short version of my story regarding elevated pancreas

enzymes and pancreatitis. My first 'documented' attack of acute

pancreatitis was in Jan 2000, about 18 months after my gallbladder was

removed. The gallbladder needed to go as it had stones, sludge, and was

only functioning at 13% of normal according to the HIDA scan. I assumed

that the pain I had under my right rib for at least 5 years prior to having

my gallbladder removed was simply from my gallbladder. I'd had at least 2

previous ultrasounds and HIDA scans over the years prior to having my

gallbladder removed. The tests failed to show anything going on with my

gallbladder until May 98. Though the pain was bad enough to stop me in my

tracks about 3-4 times a year, it never lasted long enough to warrant an ER

visit. When I had more of the horrible pain under my right rib after my

gallbladder was removed I figured it must just be bad gas pain or something

like that. Again, the severe pain never lasted long enough to warrant an ER

visit, that is until Jan 8, 2000. That time the pain hit and didn't stop

and I began puking within a minute or so. My amylase was elevated, thus the

diagnosis of acute pancreatitis. I had numerous attacks during 2000 and was

hospitalized several times. However, my amylase (nor lipase the time or two

that it was checked) were elevated during any other than the first attack in

2000. From that point on I pretty much always had at least a small amount

of pain under my right rib which varied in intensity from a mere nagging

sort of pain to the worst pain imaginable. In 2000, I had 3 ERCPs, 2 with

sphincterotomies because there was 'sludge' in the common bile duct. I was

supposed to be cured but that obviously wasn't the case. Things did get

much better by Feb 01 and my GI insisted my panc was fine, attacks were a

fluke, would never happen again. I even had an endoscopy and MRCP in Apr 02

because I had begun having the 'stop you in your tracks' attacks of pain

under my right rib. They lasted about 20-40 minutes and were horrible but

still not long lasting enough to send me to the ER. The MRCP and endoscopy

were fine and though the GI had no explanations for the pain, he was sure it

could not possibly be the pancreas. In Jul 02, while in VA on a business

trip, I had another attack of acute pancreatitis, complete with elevated

amylase, lipase, and liver enzymes. I spent 4 days in the hospital, flew

home, then landed in my local hospital just a few days later with amylase

and liver enzymes more than twice as high as in VA. Don't know what my

lipase was because at that time my small local hospital could not check the

lipase in house so they didn't ever bother checking it. I had a few more

attacks after that with an elevated amylase but most of the time my amylase

was totally normal. My liver enzymes were typically significantly elevated

but occasionally they were normal or near normal. After many months of

elevated liver enzymes my GI did a liver biopsy and found that I have

autoimmune hepatitis (AIH). He then insisted that all my pain, nausea,

elevated liver enzymes, and even the elevated panc enzymes were from the

liver disease. The liver disease stabilized quickly with medication

(prednisone and imuran to supress my immune system) but I still kept having

the same pain under my right rib. The doctors all insisted it could not

possibly be my pancreas since my amylase was normal. Even though my AIH was

under control with the medication, my liver enzymes would shoot up every

time I had an episode of the horrible pain. After almost a year of attacks

and over 20 hospitalizations and too many ER visits to count, I looked over

my labs and wondered if maybe my lipase was elevating along with my liver

enzymes when I had the flare ups of severe pain, often with nausea and

vomiting. I decided with the next attack I would go to the next town, which

has larger hospitals and they could check the lipase in house. I only had

to wait a few hours after making that decision as that very night I had a

major attack. The hour long drive was tough but well worth it. My amylase

was dead center normal (it is almost always about 42-52) but my lipase and

liver enzymes were very elevated. This was May 2003. I spent a total of 12

days in the hospital with 36 hours home sooner than my internal med doc

wanted to release me because I begged him to let me out of the hospital.

Just 36 hours after he let me go I was back with my lipase and liver enzymes

about twice as high as they had been when he admitted me the first time.

This time he called in my current GI/hepatologist who diagnosed me with

chronic pancreatitis in addition to the AIH. Since then (Jun 03), I've had

too many attacks to count. For a while, my lipase elevated with almost

every attack. However, after a few months, even my lipase didn't elevate

with most attacks. I'd say that my lipase probably elevates with about 1

out of 10 attacks now. Since Nov 02, my amylase has only elevated once and

that was this May. My liver enzymes still elevate with about 25% or so of

my attacks. The doctors who don't believe the pancreas can possibly be the

problem if the panc enzymes aren't elevated try to insist that my liver

enzymes are only elevated because of the AIH. However, my AIH is very well

under control with just Imuran currently. My liver enzymes spike during a

panc flare and then when I have nothing by mouth for 24 hours or so they

begin to return to normal. As my pain improves, my liver enzymes return to

normal, but if I push the diet too soon, my liver enzymes will often spike

back up. Thankfully my wonderful GI totally understands and has explained

to me that when you have chronic pancreatitis you can have episodes of very

severe pain with totally normal panc enzymes because the nerves surrounding

the panc have been damaged and also because the panc no longer has enough

function to produce elevated panc enzymes. Oh, in addition to the ALT and

AST liver enzymes, my alkaline phosphatate is very often elevated during an

attack. Again, some doctors try to blame this on my AIH, but AIH typically

does not cause the alk phos to elevate and my alk phos has NEVER been

elevated at times I've it checked when I'm not having a flare of the pain

under my right rib. I have some level of abdominal pain at all times and I

take medication daily for it. Most days my pain med at home (prescribed by

my pain mgmt doc) controls the pain well. However, when the pain gets to a

level 8 or above, the oral meds are worthless, not to mention the fact that

I am often puking at that point. I have quit arguing with ER doctors about

whether my pain can be caused by the pancreas at times when my panc enzymes

are normal. I really don't care what they think. Both my GI and my pcp are

on the same sheet of music. They don't base my care on what the labs do or

do not show, with the exception of the fact that if my lipase is even

slightly elevated, I'm not allowed anything by mouth until it is back down

to normal. Of course, that's really not a problem because during a flare

the last thing I want is anything by mouth.

Well,I said this would be short, but those who know me probably laughed when

they read this. Anyway, this is my story and I'm sticking to it. The thing

is that the attacks that have been the worst, as far as pain level and

puking, have not been the ones where the labs looked the worst. Try to tell

this to an ER doctor! I told my pcp recently that if I could check my labs

at home I would do so. At least then I'd know whether the ER doctors were

going to believe my pain was real!

Oh, I forgot to mention that we don't really know for sure what caused my

cp. Most of my doctors think it is at least partially autoimmune in nature

because I have so many autoimmune diseases - AIH, lupus, IgG deficiency,

antiphospholipid syndrome (an autoimmune clotting disorder).

W