Porphyrie Gemeinschaft

Treffen, unterstützen & sprechen Sie mit anderen Patienten oder ihren Familien, die mit Porphyrie leben. Tragen Sie etwas zu den Themen bei oder erzählen Sie einfach, was Ihnen auf dem Herzen liegt.

Urine test

Is it possible to have acute porphyria even if your urine test was negative?

Hi I am new on this site and saw your question.

From what I understand yes. They say you have to be in real active at the time porphyria attack for it to test high for Porphyria. Mine is the type that did not show up that high as I have the bone kidney nervous system type that does not show up well in what they are looking for.
PLUS it depends on how your urine was handled.
Urine must be handled out of heat/light etc. AND it really needs to go to a real expert type of Porphyria testing place.

Thanks for your answer. I think the place I went to is not a real expert testing place. I live in a small town.