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Who do I see for porphyria?

Blood Cancers & Disorders | Last Active: Dec 2, 2022 | Replies (26)
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@albertaeinstein

Low urine pH and porphyrins
Hello. I recently underwent a urine test for porphyrins (GI suspects porphyria). There was a note on the test result indicating that the sample of urine had a ph >5 and, since porphyrins are not stable at low pH levels, the results should be interpreted with caution. What does it mean if porphyrins are not stable? Does low urine pH reduce or increase porphyrins? Thank you.

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Replies to "Low urine pH and porphyrins Hello. I recently underwent a urine test for porphyrins (GI suspects..."
Colleen Young, Connect Director | @colleenyoung | Nov 30, 2022

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?

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daisy249 | @daisy249 | Dec 1, 2022

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.

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