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.
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
continued for several years unless one day
she came to the clinic directly and I told her she could
as well at home for 24 hours and then I would admit here
facility was at a capacity level and medically there was
nothing we could
not do for her at home.
test came back uncompromised and the results
were most dramatic. Very elevated and beyond a doubt.
problem was for me to figure out why this had not been
with previous testings.
reviewing charts and procedures it was clear that
the admitting doctors did not understand the
testing and compromised collection if administered
acute crises this patient had spot checked
with high urinary porphyrin levels, although for many
such spot checks fail to show any elevation during times
admonishment is to not expect a positive result for
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.