PKU.com Community Discussion Forum New to PKU.com MIld Hyperphe Reply To: MIld Hyperphe

#6183
Avatar of Nick
arkham
Member

With hyperphe, whether he’ll have to stay on the formula will really depend on how well he processes phe. If his levels are under 10 as an adult off-diet, he probably won’t have to be on formula. The BH4, if he were to respond, might make it more likely that his levels would stay lower. And yes, I do have to take the formula, but I’m not actually hyperphe, it turns out, I actually have mild PKU, and my levels are a bit higher off-diet than those with hyperphe. To get my levels down below 10, I have to be on the diet.

Quick Poll
Which of the following best describes you?
Parent/caregiver of an infant with PKU
Parent/caregiver of a child with PKU
Teenager with PKU
Adult with PKU
Grandparent of a child with PKU
Know someone with PKU
Healthcare professional