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  • #9132
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    Anonymous

    Before the past few months, my levels have been on the higher side.
    Since I started this 60-day Kuvan trial, my phe tolerance has been increased twice so far! I've been very consistent in keeping track of everything, and I'm not taking Kuvan yet; I'm still in the first thirty days.
    When I started, my tolerance was 325 mg/day. My levels since I began have been: 2.1, 1.4, and 0.8, respectively. The 0.8 came today: after last week when my phe tolerance was increased to 350 and then 375 because the previous level was too low! 
    I'm not quite sure whether to be excited that they're so low, or scared that I've done something wrong somehow… 
    I just don't get it! I eat a lot, and everything I consume is accounted for. 
    Any ideas?

    #9133
    Avatar of
    Anonymous

    ITS COOL THAT YOUR PHE TOLERANCE WENT UP JUST DO NOT FALL BELOW THAT 1.4 IT IS DANGEROUS THE DOCTORS/NUTRITIONISTS SHOULD TELL YOU THIS BUT IT DOESN'T ALWAYS HAPPEN THAT WAY SO YES BELOW 1 IS JUST AS BAD. HAVE YOUR DIETICIAN ADJUST INTAKE UNTIL IT IS STABLE THEN WATCH TYROSINE/OTHER VALUES CLOSE TOO TRY NOT TO SHOCK  YOUR SYSTEM , 

                                 CONGRADS YOU CAN EAT MORE NO THAT IS ALWAYS HELPFUL =<}

    #9371
    Avatar of katie
    katie86
    Member

    during this transition period  monitor your levels more frequently… Levels that are too low have the same effect on your system as levels that are too high as your body will try to compensate by catabolizing and taking it from your muscle tissue. If needed have your Dr. adjust your tolerance yet again.

    #9374

    I have heard that many people find they can tolerate more phe than they thought.  This happened with my son when we were preparing for his Kuvan trial.  We were happy that his levels were always good at the amount of phe he was taking, so it would have never occured to us to ask his dietitian if we could see how much he could actually tolerate.  We have always been told that the more natuarl protein you can tolerate the better it is for your body and brain, so I feel this is a good thing for you!

    Best Wishes.

Viewing 4 posts - 1 through 4 (of 4 total)
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