Hoping to distinguish the method of how “confirmed” acute porphyria diagnoses had determined, I recently analyzed 129 AIP, HCP and VP published cases. The results proved interesting:
- 60% noted they were diagnosed based on urinary biochemical testing following “natural excretion” of darkened urine during attack.
- 5% reported urinary biochemical testing of darkened urine following administration of “unsafe” (and unplanned) medication(s), prompting the diagnosis.
- 4% recounted DNA/blood, urine, or spinal fluid samples resulted in diagnosis.
- 31% did not disclose diagnostic methods. Note: some patients were diagnosed before the advent of biochemical testing.