What is Porphyria
The porphyrias are inherited or acquired disorders of certain enzymes in the heme biosynthetic pathway (also called porphyrin pathway). They are broadly classified as hepatic porph...
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porphyria testing
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My family has stong history of acute intermittent porphyria but have found it hard to get possitive results to tests.One of my aunty's has been diagnosed but every now and again still tests come back negative when they do a check up test on her popherin levels.
My gp is convinced i have porphria but so far the urine tests are comeing back normal.Has anyone else had the same trouble with being diagnosed? and is there any other way of testing for porphyria? Posted on 10/05/07, 09:10 pm |
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Please check out the American Porphyria Foundation. This is a great sourse of info for all your questions. Follow this link for testing questions.
http://www.porphyriafoundation.com... 
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I saw this on Mystery E.R.- Take a urine sample- clean yourself down there and catch it midstream and place the cup outside- covered of course, you can get urine sample jars at pharmacies that sell equipment- not like CVS- but places that sell canes and wlakers, ets.- put it outside in the sunlight for 24 hours- if it turns purple- you have it- maybe your doctor already did this test and if so- nevermind- just an idea :o) Good luck-u r in my prayers
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Porphyria testing is tricky. Porphyrin levels go up and down and we will usually test negative if tested while not in attack as levels drop very quickly. Many other things can mess up the results. My advice is to join a Yahoo group. My fave is simply called *Porph*. All the info you need is there and I've learned far more from that group than from my treating doctors. If you are Acute Porph, learn what triggers attacks. Very short on time and behind on reading here. Take care and know that you are not alone.
Warmly, Moonblossom
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Hey Moonblossom! I checked out the "Porph" group and joined today. Thanks for posting it! I've been dealing with my illness for a long time, but didn't know what it was until speaking with a new doctor about it 7 weeks ago. So, having some places to learn how to manage things is really great! Thanks!
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MoonBunny,
Glad that you like the group! Do you post under the same name? MoonBlossom
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