PKU.com Community Discussion Forum That’s PKU life! Blood Levels Reply To: Blood Levels

#8835
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_rea78
Member

Well I am no doctor….but I have a 2 and a half year old with classical PKU. I have had great success keeping her Phe levels in the desired range (2-6 mg/dL) with the help of her dietician at the metabolic clinic. First I have a question: do you regularly see a dietician or go to a metabolic clinic? If so what do they say about your levels? I am assuming you do as you know your blood levels. Just curious what their take on this is.

My suggestions are….first, maybe your body cannot tolerate such a high Phe intake each day. 325 mg/Phe per day may be too high. Perhaps you need to choose lower-Phe foods and eat more of them. My daughter can only have 200 mg/Phe per day. She has a very low tolerance. I keep her levels between 1.5 and 4 this way. The only time it goes high is when she is sick. Have you and your doctor considered lowering your daily amount of Phe? Again I am not a doctor, dont know how much Phe YOU personally need to function as an adult  – this is just a thought and suggestion. If your doctor has said do not go below this limit (325) then by all means don't. Maybe you could post a sample menu of what you eat per day? Hmmm what else….I do know if you are not eating enough calories then your Phe levels could also go high as your body goes into ketosis…..again just a thought. Like I said it would help if you could post some sample menus. You shouldn't have to starve yourself to keep your Phe levels low. My daugher eats a large amount of food each day, and is quite satisfied. we are able to say in the 200 mg/phe per day with no problem.

Looking forward to your response, hope that helps a little…

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