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June 24, 2011 in Uncategorized
Registered: Oct 12, 2010
gale said on June 26, 2011
i have had this too. it is usually due to phe levels being too high. it has been a problem for me so dont let the hospital tell you its nothing to do with pku. i ended up taking more supplement for low zinc and selenium levels. i was happy that they listened . i understand how much this can effect you on a daily basis. maybe your phe levels are too high. it was a year before i got treated. good luck and def tell them
Registered: Jul 1, 2011
katrina said on July 2, 2011
Hi Clairey, Yes, it’s normal to feel tired and feel next to no energy. Your energy probably will go up as your levels come down. My name is Katrina and I also have PKU and have struggled with staying on it all my life. I am 39 and I have 2 kids and neither one of them have PKU. I’m the only one in my family that does have it. I also struggle with feeling tired with lack of energy. I try to ignore it but sometimes you just can’t.
Registered: Oct 31, 2006
Bernard [BJ] said on July 9, 2011
ya all the time it is nothing new lol if it is not one thing it is another it could be your head with headaces or you stomach it just depends
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