PKU.com Community Discussion Forum New to PKU.com mild or classical ??? Reply To: mild or classical ???

#8591
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arkham
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The levels I mentioned before for each type of PKU would be levels off-diet, without formula.

The fact is, that because everyone is different, those numbers are just guidelines.  There is no way to be sure what form of PKU you have without having a mutation test – a genetic test to show exactly what mutations you carry.

In my case, I have one mild mutation and one severe mutation, so I have moderate, or variant, PKU. 

I have a fairly high tolerance for phe, apparently, as 30 years off-diet seems to have had no noticeable negative effect.

On Kuvan, my levels are excellent (last one was actually a bit low, at 1.6), while eating 45 grams of protein (plus taking 15 grams of protein equivalent in formula), as my mild mutation responds very well to Kuvan.

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