PKU levels in an adult

PKU levels in an adult

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PKU levels in an adult

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February 25, 2010 in Uncategorized

This is on behalf of my brother who has PKU. I am familiar with where his levels needed to be as a child but he is now an adult. For those of you living with adult PKU, What levels are you comfortable with that are symptom free? What sort of variance do you experience between testing? Thanks, I appreciate the advice.

6 Reviews of PKU levels in an adult

  1. Registered: Feb 26, 2007

    Posts: 0

    Chicago, Illinois

    As an adult, levels should still be between 2-6. New studies have shown that diet should be for life to obtain optimal cognitive functioning. I find that I’m definitely at my best when I keep my levels below 6. I would suggest talking to a local clinic. Where does your brother live?

  2. Registered: Apr 24, 2009

    Posts: 0

    Cornwall, New York

    like lorsar said… levels between 2-6 are ideal.. I def feel my best when they are within that range… I’ve always been able to maintain my levels pretty well.. highest being 14 at one point.. but even when levels were around 8 – I felt a HUGE difference in my attention and overall well-being

  3. Registered: Feb 8, 2010

    Posts: 0

    lexington, Massachusetts

    These are very helpful comments. Thanks. He lives in Cleveland. That is another question. He is having trouble locating a specialist. His GP is not familiar with PKU and the others are pediatricians that don’t feel that they can give good advice to an adult. How do you go about finding a clinic or specialist? I want to thank you both again for your responses.

  4. Registered: Sep 12, 2006

    Posts: 0

    Franklin, Wisconsin

    On macpad.org there is a section that lists various clinics throughout the US that treat PKU. If you follow this link http://macpad.org/page.aspx?id=92187 you should be able to find a clinic near your brother. Otherwise the clinic finder link on PKU.com might be helpful.

  5. Registered: Nov 3, 2009

    Posts: 0

    , Massachusetts

    Yes, Macpad would be a good resource to find a clinic. And I just want to re-iterate what Katie and Sarah said, 2-6 mg/dL is always optimal… and definitely when I (and many others as you can see) feel best. Some clinics or places may say that the range is boosted to 2-10 mg/dL when the child reaches adolescence/adulthood, mostly due to difficulty of dietary adherence, however, 2-6 mg/dL will still yield the best results. Just wanted to clarify if you had seen other ranges somewhere else. : )

  6. Registered: Feb 8, 2010

    Posts: 0

    lexington, Massachusetts

    Thanks again for all the helpful comments. Can you tell me how many grams of protein you are consuming per day to keep you at your desired levels?

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