SoliDeoGloria Posted August 18, 2013 Report Share Posted August 18, 2013 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? Quote Link to comment Share on other sites More sharing options...
sue1234 Posted August 18, 2013 Report Share Posted August 18, 2013 I have been tested for it, as I had some symptoms. But, the tests came back okay. I'm curious, how long did you have the urine in the sunlight? I have done this test twice(urine in sunlight) and both times my urine ends up looking like weak cola after about 6-8 hours. Quote Link to comment Share on other sites More sharing options...
SoliDeoGloria Posted August 18, 2013 Author Report Share Posted August 18, 2013 The urine started darkening as soon as I put it in the sunlight, but I left it there for about 6 hours. It reached the color of steeped black tea with a hint of a reddish tinge. I took some pictures of the darkened urine side by side with another sample that was not exposed to sunlight -- very impressive. Quote Link to comment Share on other sites More sharing options...
SoliDeoGloria Posted August 18, 2013 Author Report Share Posted August 18, 2013 Say Sue, What test(s) did they do to test you for porphyria? Was it a 24-hour urine test or a genetic test or something else? Also, I'm wondering if the tests are only indicative if you are presently going through a crisis. Any thoughts? Quote Link to comment Share on other sites More sharing options...
sue1234 Posted August 19, 2013 Report Share Posted August 19, 2013 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. Quote Link to comment Share on other sites More sharing options...
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