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  • #6626
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    Anonymous

    what are your levels and how much phe intake do u get to have?

    #6627
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    BreaMarie91
    Member

    I’m allowed 300mg of phe a day. I don’t know what my levels are right now though because I’m in a study for Kuvan. Because of the study I’m doing weekly blood tests and I’ll find out what they are on the 19th when I go in for PKU clinic. I guess I can’t know so that the results aren’t biased, meaning if my level didn’t lower I would be more strict with my diet or something so that my level would lower so it would seem like the pills are working. nBre

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