Discussions By Condition: Blood conditions

Could this be porphyria?

Posted In: Blood conditions 3 Replies
  • Posted By: Anonymous
  • July 2, 2006
  • 02:02 PM

Since I have lived in Florida, the sun seems to make me sick. After going out even for a short drive in my car I get horible nausea that lasts for weeks. My periods are also worsened during months when I have had sun-exposure. I am also a nervous wreck mentally. I've had many blood tests and everything comes back normal. Could this be porphyria?

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  • Yes, sorry to say, sounds very much so. Have you tried the "home urine test"? Just collect some in a jar -- some say to put it in the dark, others say in the light, so if you have two little jars -- and check them 24 hours later. If either or both turn brown, take them to your doctor right away! along with clear notes, because it can be awfully hard to get under formal testing conditions, for some. And good luck,Zo
    Anonymous 42789 Replies
    • September 30, 2006
    • 04:04 AM
    • 0
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  • Since I have lived in Florida, the sun seems to make me sick. After going out even for a short drive in my car I get horible nausea that lasts for weeks. My periods are also worsened during months when I have had sun-exposure. I am also a nervous wreck mentally. I've had many blood tests and everything comes back normal. Could this be porphyria?THE BEST TEST IN A 24 HOUR URINE TEST, BUT IT MUST BE DONE PROPERLY. TRY THIS FIRST. PEE FIRST THING IN THE MORNING IN A CLEAN GLASS JAR, THEN SET IT IN THE SUN. IF IT TURNS BROWNIST, LET YOUR DOCTOR KNOW, AS THIS IS A SIGN OF TOO MANY PORPHINS IN YOU URINE.
    Anonymous 42789 Replies Flag this Response
  • If you go to the Porphyria Foundation's web site you will find directions in their manual on how to do a 24 hour collection. What they don't tell you is that your porphyrin levels are not consistantly high enough to detect in urine and fecal samples. Typically during your "tough" times your levels will be high enough. It's a matter of remembering to get your samples when you feel like you know what or are bouncing off the walls. The most common thing to happen is when you notice the funny color (it doesn't have to be set in the dark or light if they're really high) you usually dismiss it thinking you're seeing things, and go ahead and flush. :)~ On the foundations web site you will also find contacts in the medical field who specialize in Porphyria and can run the tests to find out for sure.Hang in there!
    Anonymous 42789 Replies Flag this Response
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