Scottie_Nippen3 karma2013-07-12 22:17:56 UTC
PKU3 was like drinking flavored concrete.
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Scottie_Nippen2 karma2013-07-12 17:01:02 UTC
I also have PKU, this is one of the best descriptions of the physical effects of having high blood-Phe levels.
In my case, if my blood levels are a bit elevated (which they are now, curse you IHOP and your delicious pancakes) I tend to feel fatigued and just generally uncomfortable. As the Phenylalanine saturates the blood-brain barrier (where most neurotransmitters are transferred), it begins to inhibit other essential transmitters, like /u/mermaid-out-of-water said. At least in my case, I can notice a slight tremor in my fingers and toes, and I feel very "jittery." These effects vary in severity, but usually only last about a day if I get my levels under control again.
If you don't mind me asking, /u/mermaid-out-of-water, what formula are you on? I'm currently taking Phenyl-Free 60, just because it's the most concentrated and has the highest protein equivalent per gram.
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