Community Discussion Forum Adults and PKU Anyone Else Ever Wonder if they Even Had Pku?

Viewing 1 post (of 1 total)
  • Author
  • #9493
    Avatar of Marcus

     This forum seems to barely be used but its a good a place as any to comment about this…

    I have a mild case of PKU and I was on the diet, albeit a forgiving one, for my entire childhood. My levels generally stayed between 600 and 1200.
    Now I always thought everything was about levels but I have never felt different, even between levels averaging 500 and my maximum levels at like 1600.

    Over the last 2 or 3 years I have been bad with my diet. Literally, I will maybe shake my head at a product once or twice a day because of protein  but it tends to not even bother me, I even stopped asking them to take a large portion of the meat off my sandwiches at subway (which was something I had done since being 6 or 7). 

    As an example of how little I have been concerned with my PKU recently, I have switched from white pasta to whole grain gluten free pasta in an attempt to lose a few pounds. I haven't noticed any mal effects and I eat a lot of pasta.
    Last year when I was checked my level was still all the way down at 600 as well. My grades are higher than they've ever been, my focus is great, I honestly don't even feel like I have PKU anymore…

    Is this normal? Some trap people my age fall into because of however the build up works?

Viewing 1 post (of 1 total)
Quick Poll
Which of the following best describes you?
Parent/caregiver of an infant with PKU
Parent/caregiver of a child with PKU
Teenager with PKU
Adult with PKU
Grandparent of a child with PKU
Know someone with PKU
Healthcare professional