I was tested for Porphyria in October of 2015. The specimen was a 24 hour urine collection that they had to repeat 3 times because they did not handle it properly. My labs were explained to be highly ... View answer

porphyria and have to have phlebotomy treatments at Ferritin above 50. 143 is the highest I've ever been. Today, my ALT measured at 68. It was 32 in December 2015. People with porphyria are at high risk of ... View answer

Is/are there type(s) of porphyria that can cause edema and metabolic neuropathy? How can I best learn more about hereditary diseases that might fit my symptoms? ... View answer

In September 1986 my wife (born 31 March 1937) was diagnosed to have Acute Intermittent Porphyria . Since then we ar living with this situation as shown in the chronicle attached. In the beginning of 2015 ... View answer

I am a 47 year old Caucasian female. I have the following diagnoses: interstitial cystitis , porphyria (possibly peudo-porphyria), essential tremors, peripheral neuropathy , lumbar spondylosis ... View answer

diagnosis of porphyria, they will give me whatever drugs they have on hand. i also fear that if i show up ...i have a history of variegate porphyria and possibly coproporphyria in my family, as... View answer

My daughter has symptoms of acute intermittent porphyria, her immunologist tested for porphyria but ... immunologist says there is no reason to retest. We can easily trigger an attack, 2 know porphyria... View answer

results are inconclusive as athe doctor is wanting to rule out cutaneous porphyria. What is the possibility that this diagnoso might mean wowerelf porphyria? ... View answer

intermittent porphyria. lately i have been having major issues regulating my body temperture. im constantly clammy and sweaty or super hot and super sweaty or freezing. can you tell me what the porphyria... View answer

Our family has a history of porphyria. After reading the list of symtoms, sorry can t spell, many ... doctors don t know what we are talking about. Our Aunt passed away from porphyria when she was a young ... View answer