Problems with Porphyrin Urinary Testing in a Hospital Setting

        As I recall  a porphyria patient of mine, the  urinary porphyrin test would  not show anything for her time and again when she would go into an attack over a weekend or when I was on vacation.

        She would fo to the ER and instead of regarding the diagnostic urinary testing as a priority, they would finish placing her i.v. line and instead of waiting while she completed the testing , they would immediately begin the glucose.

        When  gluocse  is started, it immediately begins to repress the over productions of porphyrins in the liver. By the time the 24 hours is completed  there are no or very little porphyrin population left  in urine.  The laboratory   will find nothing. And then generally the phyhsicians reviewing the test results will assume that the patient is not porphyric based upon the results.

        This problem continued for several years unless one day
she came to the clinic directly and I told her she could do just
as well at home for 24 hours and then I would admit here because our
facility was at a capacity level and medically there was nothing we could
not do for her at home.

        Then  the test came back uncompromised and the results
were most dramatic. Very elevated and beyond a doubt. Then the
problem was for me to figure out why this had not been the case
with previous testings.

        After reviewing charts and procedures it was clear that
the admitting  doctors did not  understand the connection between
testing and compromised collection if administered glucose.

        Even between acute  crises this patient had spot checked
with high urinary porphyrin levels, although for many patients
such spot checks fail to show any elevation during times of remission.

        My admonishment is to not  expect a positive result for your urine
test if it is administered at the hospital and you are placed on glucose.

        The best time to have urine and stool 24h  tests is when you begin
to have symptoms but do not  need to go to ER. When you follow through here, if you are porphyric, your test results will  in this case the level will be very high most likely.

Dr. Robert Johnson M.D.