Elevated erythrocyte protoporphyrins

[IKnowYouHearMe]

Does anyone know what can cause erythrocyte protoporphyrin levels to be more than twice what they should? I've had GI problems for three years and just recently a doctor thought I might have porphyria. After reviewing my test results, though, he really didn't know what to do with me. I've done research and I believe protoporphyrins are elevated in erythropoietic protoporphyria, but I have no symptoms of photosensitivity. I've contacted the American Porphyria Foundation and they're supposed to be calling me, but I have a feeling I'm going to end up traveling to either their foundation's headquarters or Harvard, unless these elevated erythrocyte protoporphyrins levels can be explained somehow. I have trouble eating and I've already been told I have a severe Vitamin A and beta carotene deficiency, and a slight Vitamin D deficiency.  

Is there any way these elevated levels could indicate something other than porphyria?

Could any porphyria suffers shed light on how they were diagnosed?

Thanks for your time :]

[SterlingSpectrum]

I don't know if you've found anything out recently, but I was in the exact same boat as you and just got some answers.  My FEP levels last year were 65 and this year 68.  At first I was diagnosed with EPP, but then they said my levels weren't high enough.  I was just diagnosed with X-linked dominant Erythropoietic Protoporphryia.  I have similar symptoms as you.  Many EPP sufferers have abdominal pain and discomfort.  The porphyria foundation doesn't list even half of the sypmtoms.  Go on facebook (EPP-Erythropoietic Protoporphyria) where there is a support group.  I've learned more about this disorder from other sufferers then any doctor...even a porphyria specialist.  I didn't have pain from the light until recently.  It's progressive.  Good luck, hope you found some answers.

[Dr Santos]

Hi,
Thank you for your update. You can repeat the test to make sure that the result is consistent or as you said, check with a specialist for proper evaluation and further tests. Do keep us posted. Best regards.

[IKnowYouHearMe]

Thanks for your reply :) From just common blood tests, I don't appear to be anemic, or suffer from an iron deficiency. Lead has also been negative. I believe, with some of these anemias, that more extensive tests would be needed. My doctor has only thought about porphyria, and he appears to not even realize that an increase in the erythrocyte protoporphyrins would cause EPP, not one of the acute porphyrias, which would fit my symptoms much more accurately. I have a feeling I'll have to find a hematologist.

[Dr Santos]

Hi,
How are you? Increased erythrocyte protoporphyrin levels may cause iron deficiency anemia, lead Poisoning, sideroblastic anemia, erythropoietic protoporphyria, hemolytic anemia or chronic diseases.  Protoporphyrin is converted to heme by the enzyme ferrocheletase. Lead can inhibit this enzyme and protoporphyrin accumulates. With impaired heme synthesis, photoporphyrin accumulates. A  Hematofluorimeter is usually used to measure protoporphyrin. Take care and regards.