Jump to content
Search In
  • More options...
Find results that contain...
Find results in...
SoliDeoGloria

Anyone Diagnosed With Porphyria?

Recommended Posts

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?

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites

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?

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.


×
×
  • Create New...