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Who do I see for porphyria?

Posted by daisy249 @daisy249, Aug 23, 2022

Are there any doctors at Mayo Rochester , or in MN, that specialize in Porphyria? I’m lost, as it a rare disease. High urine porphyrins, all symptoms and acute attacks are severe.
To complicate things, I also have have nodal marginal zone lymphoma, sjogrens, pernicious anemia/b12 deficiency and other malabsorption/deficiencies. High kryptopyrroles indicating pyroluria , substantiated by b6 deficiency ( awaiting zinc and copper labs).
I’m not a dr, I can’t continue to find these things on my own at my own expense and once found, I certainly cannot treat.
Can anyone point me to some doctors with specialty these conditions?
I have specialists for Sjögren’s and lymphoma, the rest are positive tests, no official diagnosis and nowhere to turn.

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daisy249 | @daisy249 | Aug 26, 2022

I am unsure if I have it, but have high corproporphyrin iii ( I think it was iii) in PBG test, I was not in any type of flare. I don’t really have the skin symptoms, so doubt its the cutaneous type.
Symptoms forever, always attributed to other maladies, but treatment of those things has not led to improvement. I thought the vomiting and diarrhea was from CPTSD.
I have a porphyria genetic test form , hopefully my gp will fill it out. I am established with rheumatology and hematology at Mayo, but getting appointments, transportation and a long enough appt to get questions answered is tough. They also subspecialize so they only treat specific issues.

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Colleen Young, Connect Director | @colleenyoung | Aug 25, 2022

Hi @daisy249, and welcome. Given your multiple conditions and need for a multidisciplinary care team, I would encourage to seek an appointment at Mayo Clinic. You can self refer. Get started here: http://mayocl.in/1mtmR63

Here is more information about the hematology and rheumatology departments at Mayo
- Hematology https://www.mayoclinic.org/departments-centers/hematology/home/orc-20201280
- Rheumatology https://www.mayoclinic.org/departments-centers/rheumatology/sections/overview/ovc-20477132

Now back to porphyria. I'd also like to bring @wishingtobepain and @steeldove into this discussion. They have experience with porphyria.

Daisy, what type of porphyria do you have? How long have you been dealing with this?

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