Community Discussion Forum Parent support Low blood phe levels

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    Avatar of Jennifer

     I have a quick question.. My son, Ian, is hyperphe (mild PKU). His diet keeps his level between 2-6. However the last two blood tests have come back as 0.7 and 0.6. She wants us to add more protein because she said his level shouldn't be that low. I was just wondering why it shouldn't be low and will anything happen to him if it stays that low?

    Thanks in advance!

    Avatar of

    I'd like to know that myself! I'm 19 and I have classical PKU. Recently, my phe tolerance has been increased a few times because I've had levels such as 0.8 and 1.1.

    Avatar of Brenda

    The body still needs a certain amount of protein in childhood growth to grow properly. Decreasing protein to low amounts I believe causes the body to have to find it somewhere else, their own body the body if it doesn't get enough protein or calories starts to draw protein from other areas, muscle, tissue. If that happens your levels go way up where they shouldn't be.  I know this is true if they don't get enough proteins and I was led to belie

    When my son was an infant if the test came back to low they would have me put 1 oz of cows milk to bumb his level up. I still do this today when his blood test come back below a 2.

    Usually I would think if your working with a nutritionest they would contact you if it was a cause for alarm. Or call them and talk with them, there's lot's to  learn about PKU.


    Avatar of Jennifer

     Thanks! Our nutritionest was out on vacation so we couldn't get a hold of her. She explained everything (like you did also). They did tell us when it was low that if it didn't come up on the next blood test we would have to add infant formula back in his diet because he can't tolerate milk (it gives him bad stomach aches). But they started him on eggs and his level went up to 2.4 so they aren't worried! Thanks again for the answers!

    Avatar of Patrick5678

    I was wondering if anyone can help.

    I am 32 with Classical PKU and on 7 exchanges. I have been around this since birth with only 1/2 exchange increase.

    My last blood test result was only 230uml when I had 15 1/2 exchanges the previous day. I've been told the more natural protein you have the higher the phe result should be but I've had a much lower phe result??

    I've also heard if the body doesn't get enough protein it will try and get this from muscle and can make the levels rise as of a result.

    Can anyone explain this please?

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