PKU.com Community Discussion Forum New to PKU.com Highly variable phe levels Reply To: Highly variable phe levels

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how long inbetween levels are they testing? because unfortatntly i have seen spikes like this in myself . especially as a child. but that there were weeks inbetween levels. if there tesing every few days then i have never heard of that. i think the doctor probly does know because pku is becoming more commen, unless hes not a PKU doctor. but then on the other had i was a rare casue and broke alot of what my doctors knew. my mom said i was like a guniea pig for most of my childhood, though i find now that it was worth it cause i know my body and so does my medical team.
sorry i couldnt be more help, i hope all works out. if u have any questions im sure me, or Bre ( shes pretty populare on here) would love to help!!

~Amanda Cosburn~
21CPKU Victoria BC, Canada!

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