Normal Tests & a Pancreatitis Diagnosis

[Guest guest]

,

You wrote, “Well he (the doctor) said her tests were normal, said she didn't

have Pancreatitis.â€

If I could change one thing in my lifetime, it would be regarding the issue of

these normal results that so many people have, and the subsequent problems of

having supporting documentation for a diagnosis of Chronic Pancreatitis. Having

met over 2000 persons with either a diagnosis of Acute or Chronic Pancreatitis

or having real similiar symptoms, I have been amazed at the poor level of

understanding that this disease has. Even today medical students receive

inaccurate information regarding the disease process, the causes, and the

diagnostic necessary for early recognition of the disease necessary for early

and aggressive intervention. As you may know, the PAI sponsors an Annual

Symposium on Pancreatitis and have been fortunate to have leading

Pancreatologists speak. Even within the field of Pancreatology, however, there

are so many subspecialties, and differing opinions. Unfortunately, there are not

many Pancreatologists in the Emergency Rooms, so getting a diagnosis is hard,

much less the controversy of how aggressive to treat the disease. Should it be a

wait and see situation or should you do whatever measures you can do halt the

disease process and the auto digestion which causes irreversible damage to both

the endocrine, the hormonal part, and exocrine pancreas, the digestive part.

Many Pancreatologists feel that it why there is such a sense of urgency, as

there is no question that when someone has Chronic Pancreatitis, the pancreas is

slowly suffering autodigestion, and subsequent damage. That is why people with

Chronic Pancreatitis do not have elevated enzyme levels, like Amylase or Lipase.

By virtue of the disease process itself, the enzymes which are causing the

Pancreatitis are destroying the cells that produce the enzymes in the first

place. So there is no way for people with advanced Chronic Pancreatitis to even

produce enzymes. I don’t know why they don’t understand that

pathophysiological process. Some doctors use the enzyme levels as a diagnostic

factor to differentiate between the acute and chronic states.

There is a misunderstanding regarding “pancreatic burnout†also. Many

doctors have the understanding that when a patient no longer has elevated enzyme

levels then the pancreas can no longer produce the enzymes and has therefore

burned out. That is true. However, the damage does not stop there. The

autodigestion usually extends to the surrounding organs and the spinal nerves

that innervate the pancreas, causing what is known as neuropathic nerve damage.

This explains why persons with Chronic Pancreatitis often present to the

Emergency Room with atypical dull pain, which radiates to the back, and does not

fit the classic textbook picture of sharp substernal abdominal pain, often seen

with Acute Pancreatitis.

I always suggest that people ask the doctor who finally gives them a diagnosis

to write a letter stating the patient’s name, the date and diagnosis of

Chronic Pancreatitis, and a sentence or two explaining that the “normalâ€

tests, such as Amylase / Lipase, are not appropriate for them, and would

probably come back negative, and why. This should be presented to their local

PCP and hospital Emergency Room whenever they need to be seen. I know that

Indiana University Hospital and MUSC have been real good about doing this.

--

Karyn E. , RN

Executive Director, PAI

http://www.pancassociation.org

Pancreatitis Association International