4 doctors weighed in:
My doctor diagnosed me with porphyria but the porphyria expert said I did not have it.  why would this happen and should I be retested?
4 doctors weighed in

Dr. Kelty Baker
Internal Medicine - Hematology
2 doctors agree
In brief: Porphyria
Testing for porphyria can be very tricky.
General medicine doctors can sometimes have difficulty interpreting the test results correctly. If a porphyria expert says you don't have it, that's most likely true. Another option would be to see a different porphyria expert.

In brief: Porphyria
Testing for porphyria can be very tricky.
General medicine doctors can sometimes have difficulty interpreting the test results correctly. If a porphyria expert says you don't have it, that's most likely true. Another option would be to see a different porphyria expert.
Dr. Kelty Baker
Dr. Kelty Baker
Thank
Dr. Gregg Albers
Addiction Medicine
In brief: Porphyria
Your doctor may have based his or her opinion on your symptoms, while the specialist bases his or her opinion on the tests, the only way to know if the symptoms are from porphyria.
The specialist may have some other ideas and tests to help you with your problem. You are always welcome to get a second opinion, with any unsolved health problem.

In brief: Porphyria
Your doctor may have based his or her opinion on your symptoms, while the specialist bases his or her opinion on the tests, the only way to know if the symptoms are from porphyria.
The specialist may have some other ideas and tests to help you with your problem. You are always welcome to get a second opinion, with any unsolved health problem.
Dr. Gregg Albers
Dr. Gregg Albers
Thank
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