← Return to Who do I see for porphyria?
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Blood Cancers & Disorders | Last Active: Dec 2, 2022 | Replies (26)
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Replies to "Low urine pH and porphyrins Hello. I recently underwent a urine test for porphyrins (GI suspects..."
I can’t answer your specific question, I’m sorry. But if you look up American Porphyria Foundation ( I think that’s the name?), Desiree Lyons is head and founder, they can connect you with a free porphyria genetic test. They will send you the info and request form , which must be filled out by your physician.
They are a great information resource
I just submitted my test. Awaiting results.
Best of luck to you.
Hi @albertaeinstein, It sounds like you received the results of your porphyrin urine test before you've had a chance to meet with your doctor.
I moved your message to this existing discussion about porphyria:
- Who do I see for porphyria?: https://connect.mayoclinic.org/discussion/who-do-i-see-for-porphyria/
I did this so you can connect with others like @timoteo @clive1395 @daisy249 @donnasa @sherry26
Alberta, when do you see your doctor who can interpret the test and discuss the results with you?