PKU.com Community Discussion Forum New to PKU.com Any PKU experts out there?

Viewing 5 posts - 1 through 5 (of 5 total)
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  • #6967
    Avatar of Kristi
    KristiKon
    Member

    O-kay, so this might be a dumb question, or maybe something that I should know the answer to by now, but I don’t. If you are unable to convert phe into tyrosene, what happens to the little bit of phe that you are allowed to have in your diet…does it just eventually go away, get absorbed into the body somehow or what? Just something I was wondering tonight.
    –Kristi

    #6968
    Avatar of Breanna
    BreaMarie91
    Member

    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

    #6969
    Avatar of
    Anonymous

    i was told that is absorbed, and i asked my detican what happens when some has constant high phe levels just it just keep building up..she said its like being high or drunk and its called being toxified, the feelings eventually go down and it breaks up but it leaves behind damage over time, sorry if this makes no sense my wrists are killing me…but hey good question hope i helped a little!

    #6970
    Avatar of Kristi
    KristiKon
    Member

    Bre,
    I don’t know what the listserv is or how to join (although I’ve heard it mentioned several times before).
    –Kriati

    #6973
    Avatar of Breanna
    BreaMarie91
    Member

    Hey Kristi, the listserv is just another group that you can join. You can send an email to the group and it will get sent out to all of the 1000 something members. If you want to check it out the website is http://www.listserv.emory.edu/archives/pku-support-l.html there is a link that you can go to so that you can join. nBre

Viewing 5 posts - 1 through 5 (of 5 total)
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