High Lipase Numbers with no symptoms - hyperlipasemia
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For over 3 years I had flucatinig lipase numbers ranging from 1-4x over limit. The first was found incidentally while completely asymptomatic. When discovered I was given ultrasound, ct scans with constrast, ca19, colonscopy, celiac test, liver, kindey, cbc, hep, etc and all were fine. I do not drink and do not have a family history of pancreatic cancer.
Gastros diagnosed me with benign condition. However 2 years later for reassurance I had MRI on pancrease which again was normal. My gastro and his team tell me not to worry and there is nothing wrong with pancreas.
However I read these reports and it looks like I need EUS test is the test I need, which is not common here in USA. My gastro refuses to send me get one because he does not feel it's necessary. Reports below state that my so-called benheing condition is not so benign and pancreatic disease are found over 50% of time with further testing with EUS with people with Asymptomatic Pancreatic Hyperenzymemia. Some days my test are normal and some days they over slighlt over limit or 1x over limit. I have no symptoms whatsover.
So far I seen 4 gastros and they all think I have too much anxiety and not to worry but they are unaware of the latest studies.
http://www.omicsgroup.org/journals/2165-7092/2165-7092-S1-e001.pdf
Familial pancreatic hyperenzymemia is a benign condition and its pathophysiological mechanism is still unknown. An appropriate clinical and imaging follow-up should be carried out in those patients having this condition associated with familial pancreatic cancer.
An elevation in serum pancreatic enzymes in the absence of pancreatic disease is reported in the literature and defined as “benign pancreatic hyperenzymemia” or “Gullo’s syndrome” [7]. This condition can occur sporadically or in a familiar form, it is asymptomatic, and it is generally discovered incidentally. Nobody of the subjects included in this definition had been treated in the past with pancreatotoxic drugs. These authors sustain that at least one year must pass after the initial finding of pancreatic hyperenzymemia before it can be considered benign. Furthermore, they emphasize that a proper diagnosis of this condition is important because it allows the clinician to reassure the subject that this alteration is benign and does not require any kind of therapy. Nevertheless the possibility that these individuals could have an increased risk of pancreatic cancer cannot be excluded.
http://www.ncbi.nlm.nih.gov/pubmed/19296399
Chronic asymptomatic pancreatic hyperenzymemia is a benign condition in only half of the cases: a prospective study.
http://www.ncbi.nlm.nih.gov/pubmed/23042375
it's characterized by serum elevation of all pancreatic enzymes in the absence of underlying diseases; it occurs in either sporadic or familial form and it persists over time with considerable fluctuation in serum enzyme concentrations, including frequent normalizations. Proper diagnosis of this form of hyperenzymemia is important because it reassures the subjects having this anomaly that the syndrome is benign, and because it can prevent multiple and expensive diagnostic tests or useless hospitalizations or therapies.
Chronic asymptomatic hyperamylasemia unrelated to pancreatic diseases.
Summary of "Chronic asymptomatic hyperamylasemia unrelated to pancreatic diseases."
Purpose: This study was addressed to assess the clinical characteristics of patients presenting with chronic hyperamylasemia unrelated to pancreatic diseases (CHUPD). Almost all patients presenting with chronic hyperamylasemia undergo expensive, long, difficult, and often unnecessarily repeated diagnostic procedures. This is in conjunction with the poor knowledge of the fact that besides hyperenzymemia secondary to pancreatic diseases and systemic illnesses, various non-pathological forms of chronic hyperamylasemia without relevant pathologic consequence can occur in clinical practice.Material and Methods: Data of all patients with CHUPD were retrospectively reviewed (June 1997-December 2009). Fifty one patients were included in the study; median follow up was 48 months (range 8-112 months). Their pre-enrolment diagnoses were: chronic pancreatitis in 31 cases (60.7%) and recurrent pancreatitis in 13 cases (25.4%); the remaining 7 patients (13.7%) were without a specific diagnosis.Results: Our observations, supported by diagnostic procedures (Ca19-9 serum levels, abdominal ultrasonography, computed tomography and magnetic resonance, endoscopic retrograde cholangiopancreatography, and endoscopic ultrasonography) revealed that CHUPD was secondary to: a) benign pancreatic hyperamylasemia, 20 patients (39.2%); b) macroamylasemia, 18 patients (35.2 %) and c) salivary hyperamylasemia, 13 patients (25.4%).Conclusions: Due to the poor familiarity with CHUPD, the occurrence of this condition quite frequently leads to unnecessarily repeated diagnostic procedures.
Affiliation
Asymptomatic pancreatic enzyme elevation is a frequent clinical problem. In almost 90% of the cases the pancreas will be normal. In the remaining cases
2 likes, 4 replies
s32521 jersey88AD
Posted
So first thing is I think that you need to make sure you have your facts correct( just because the internet says something does not mean it's true!), EUS( Endoscopic Ultrasound) is an extremely common procedure in the USA, I do not know where you heard it is an uncommon procedure because that is 100% false. Secondly if you weren't haven't any symptoms then why were they doing a blood test for lipase on you? I think you are do have too much anxiety because if you have any pancreas damage it will show on an MRI better than it would on an endoscopic ultrasound plus your insurance won't cover it if it is an unnessesary test which it is if the MRI and CT do not show anything. And if 4 or 5 different gastroenterologists said you are fine then you are fine! Remember that these doctors had 12+ years of school and training and you read some articles on the internet and thing you know more than they do. Also I don't know if you know but benign means (of a disease) not harmful in effect. That's means that it won't hurt you and is nothing to worry about. You also quote "pancreatic disease are found over 50% of time with further testing by EUS"; if your MRI was fine that means no Pancreatic disease. An MRI has a higher quality image than an ultrasound does. You are fine I think you need to stop worrying and trying to self diagnose yourself because you are just stressing yourself out. Don't worry until you get a reason to worry like f you get symptomatic!
Lapka jersey88AD
Posted
So glad you have posted this. I'm in similar situation since May 2016. Asymptomatic high lipase (132- lab's reference 13-60), elevated amylase (129-lab's reference 28-100). Ultrasound of abdomen without any abnormalities. MRI fine, only moderate liver enlargement (may be because of age (77), no medication, reasonably active, health conscious for years. Just in case did liver panel tests yesterday. Dr. doesn't know the cause.
Should I do renal tests or just wait and see? I would appreciate your suggestions. So happy to read your very informative post. Thank you, thank you kindly. Have a wonderful day! Danuta
HealthMatters jersey88AD
Posted
Although some months after the fact ... I am compelled to reply to the message exchanges after being lead here for my search on high lipase and pancrease matters At age 60 if I have learned anything in life ...it is this ...there are a number of sayings out there ...appled doesn't fall from the tree is one that I have to admit even though I thought I would never be like my mother ...I have had to laugh to learn that indeed I do have character traites. Ha\ving said that there is another saying that rings true to the matters at hand...you are your own best doctor ..we must listen to our mind/body connections.
I just spent the last year in and out of emergency and 2 hospitalizations with every test/imaging you can have ..no conclusive reason for increased lipase and inflammation of pancrease - there are 3 matters associated with symptoms - alcohol (not in my lifestyle) medications (none) and gall stones - none identified
So I am on replibabl medical web sites educating myself and doctor has been refusing referrals that other medical professionals are saying I should request Two hospital stays over 3 days IV fluids and pain that I do not care to experience again finds me now taking my own health into my own hands I have managed to gain recognition by the doctor last visit to look at that which I have been saying may be worth looking at Yes sthe discussion of anxiety and worry lead most visits and I started to believe maybe it is me and I am too worried about it being something it is not. One year later and a very serious drop in blood pressure, heart rate last hospital stay and I am forefront to say this...medical industry has protocols ..doctors hands are tied at times I am in Canada and I was told yesterday folks are going to the States for 2nd opinions and consults I just paid for a private MRI $760 dollars so I could have it within 3 days not the 6 months plus wait list our public health care system has and at times I hear up to 2 years wait. If it does boil down to worry and anxiety ..then why are medical professions not making referrals to cognitive behaviour therapy, mindfulness workshops
We are our own best medicine and forefront to everything is stress reduction practices ..how does one relieve stress when it is the medical health system causing it?! There have been delays in referrals months on end so I now have demanded multiple referrals so that as we stage me through each specialization and find no contributing factors I have the next in line ...and when/if we find route cause then all others can be cancelled appointments. I paid for the MRI as waiting is the biggest stressor and having some contribution as the patient is key to my preferred methods of "care" Yes we have lost the "care" out of our Health systems So if there is truth to this saying "we are our own best doctor" then follow what it is you think you need and if the doctor is not engaging in conversation ask the question a different way ...I found that worked best So doctor tell me how it is the health care team knows it is not x, y or z I started to get more answers or on two occassions the referall I was asking for (lol)
When this is done for me - I have answers and treatment or direction of cause I will be finding another doctor - now that I know what to ask - do you have hospital privilages (currently my doctor does not so I had to deal with hospital doctors who at times did not agree with each other and learnign this added even more stress and confusion as to what level of care am I getting I started to see it through differing lenses after that ...my condition is that complicated that I best be on top of the game and ask any questions that my mind/body believe I should ask Forfront in my life right now is looking at food chain and putting all I can into stress reducing practices ..meditation, mindfulness, massage, play, laughter and exercise (whatever that is without going over board)
It is a new day and a new way everytime I awake and chose to do whatever it takes May it be yours as well
komw jersey88AD
Posted
Hi!
4 years ago, I was some problems with pain inside my stomach. I went to the hospital, and they found that I have elevated some of my liver enzymes, and pancreas enzymes (lipase, amylaze). Even if pain was very small, they thought that is acute pancreatitis. They made some scans (ultrasonography, and CT with contrast), but they did not find anything. After 10 days of starvation diet (without any food / water, only drips) they found that I'm suffering from Cytomegalovirus, so they decide to let me go home without any treatement.
And next for those 4 years all the time I had an elevated lipase and amylase. I've tried to find where the problem is for last 4 years. I had many tests (from blood, and some scans), and I did not find anything interesting.
I had scans: CT with contrast, MRCP, MRI, tens of ultrasonographies, 2x EUS but there are no changes in pancreas
I had an IgG4 test, because the doctors were thought that it is an autoimmune pancreatitis. I have an elevated level of IgG4 (from 1x to 3x over limit), so they decided to give me steroids. I was on steroids for 1 year without any result.
My blood tests (above limit):
- all the time I have elevated lipase and amylase in blood (lipase average 3x, but up to 20x, amylase average 2x, but up to 6x), I had never normal results of lipase / amylase
- amylase in urine: fluctuate all the time (from 2x to 20x)
- lymphocytes in blood (limit is 40% I have ~ 43%)
- ANA antibodies (limit 1:80 I have 1: 320, but they can not find types of antibodies)
- IgG4 (1x - 3x over limit)
- CRP - (1x - 2x over limit)
- cholesterol (always in upper limit)
- triglycerides (always in upper limit, sometimes over limit)
- liver tests (sometimes is OK, sometimes GGTP and ALT is 1,5X over limit)
Additional blood tests (results were ok)
- gastrine
- CA19.9
- CEA
- Pancreatic elastin in the feces
- ASO
- Whole IgG
- Whole IgA
- Whole IgM
- Whole IgE
- Helicobacter pylori IgG
Giardia lamblia IgM / IgG
- Yersinia many types
- Bartonellosis
- Brucella IgG / IgM, OWD
- CMV (4 years ago it was elevated IgM, but now only IgG is elevated and it is OK)
- Lyme disease IgG, IgM western blot
- Toxoplasmosis (probably when I was a child I suffer from toxo, so currently IgG is elevated, and IgM is ok)
- allergic tests
- Hiv tests
- Insuline
- Glucose
- ASMA, AMA, anti-LKM antibodies
Celiac disease (anti GAD IgG)
- ICA antibodies
- CCP antibodies
- pANCA, cANCA antibodies
- pASCA antibodies
- Latex RF, RF
- TPO antibodies
- TG antibodies
- genetic test for Hereditary pancreatitis
Scans:
- CT
- MRCP
- MRI
- tens of ultrasonography
- 2x EUS
In this 4 years my first daughter was born, when she was born, her amylase / lipase was OK, but after few months its elevated to same level as me. Now she is 4 years old, and she has the elevated lipase / amylase. She was in hostpial for 1 week, without any new information. She had 4 ultrasonographys, similiar like me, without any changes in pancreas. She also does not have any well known genetic modification.
My second daughter was born 4 months ago, and also blood results after when she was born was ok, so I'm waiting a few next months to prepare next blood results, and probably it will be elevated.
The funnies thing is that all of the doctors which I was meet, does not have any idea what it is. I was went to tens of doctors, I went to the best polish doctors of pancreas, and no one had idea how to treat me and my daughter.
I've never heard about this Gullo syndrome before I read this forum topic.
Doctors also have a problem how to name it, and they sometimes say that it is a disease, sometimes that is not a disease.
But now, I think that I and my daughter have this Gullo syndrome, and we are a typical example of this syndrome.
I wish that it would be much time, it much money, and it much mental health, but finnaly I know that it is not a disease and it does not have impact to my health, and to my life.