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Anyone Diagnosed With Porphyria?


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I recently had a very weird experience. One day, out of the blue, I became very ill. I thought it was a POTS flare-up. I remembered that there is a "poor man's" porphyria test, so I tried it out. The urine sample that I put in the sunlight darkened very quickly. I called my doctor and went for a urine test at the hospital. The test is still "pending". Does anyone here have porphyria? Is it hard to get a diagnosis? Is there any other condition that would cause urine to darken in the sunlight?

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They only did blood tests checking on porphryin levels I believe. I did not have the urine test, but from what I understand, it is the best test. I have my own 23andme genetic tests, and of all the ones that influence porphyria(I think about 6 of them), I am okay except one SNP is heterozygous. So I don't think I have a genetic porphyria, but do wonder if I have some kind of environmental influence, if at all.

Keep us updated on what you find out.

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