Community Discussion Forum New to Any PKU experts out there? Reply To: Any PKU experts out there?

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I think that the little bit of phe that people with PKU do have does it used up (like it does with those who don’t have PKU), but much slower. I guess that’s why we have to limit our phe so that our bodies have enough time to process the little bit of phe. And yes, PKU’ers do have phe in their blood because if we weren’t suppose to then our doctors would want our levels to be 0mg/dl. We still need a little bit of phe so that our bodies can use it.
I’m not sure if this is 100% correct since it was years ago when I asked my doctor this, but it’s probably 90% right.
If your on the listserv you could try asking there. I’m sure if you asked Dr Koch or Virginia Schuett they would be happy to answer, they always seem willing to answer questions. nBre

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