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PKU Symptom Checker

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For people with PKU, the symptoms of high or unstable blood Phe levels can develop slowly over time, and not all patients will have the same symptoms.

Answer the questions below to get an emailed report that you can share with your clinic team at your next appointment.

It is difficult for me to focus

Not difficult
Sometimes difficult
Always difficult
When blood Phe levels increase, there can be a toxic buildup of Phe in the brain.

I have recently found it difficult to maintain a PKU-friendly Phe-restricted diet

Not difficult
Sometimes Difficult
Always Difficult
Nearly 9 out of 10 adults with PKU are unable to follow a Phe-restricted diet.

I can be forgetful, and I often misplace things or need repeated reminders

Never forgetful
Sometimes forgetful
Always forgetful
The symptoms of high or unstable blood Phe levels can develop slowly over time and be hard to recognize.

I feel uncomfortable in groups or get anxious when leaving the house

Never
Sometimes
Always
High or unstable blood Phe levels have been associated with anxiety and depression in adolescents and adults with PKU.

I don’t understand what is causing my mood changes, and can feel sad or angry without knowing why

Never
Sometimes
Always
PKU experts recommend that people with PKU keep their blood Phe levels between 2 and 6 mg/dL throughout their lives.

I often feel “foggy” or unable to pay attention

Never foggy
Sometimes foggy
Always foggy
Nearly 5 out of 10 adults with PKU have blood Phe levels above 10 mg/dL with their current treatment.

I often have trouble organizing daily tasks and figuring out a plan of action

Never
Sometimes
Always
You might not notice the impact PKU is having on your everyday life. That’s why it’s important to ask someone who knows you well for their feedback.

It can take me a long time to respond to a question, and I find it difficult to think quickly

Never
Sometimes
Always
Studies have shown that blood Phe levels that remain high over time can have negative effects on memory.
Reducing blood Phe levels has been associated with improvements in PKU symptoms, including memory and anxiety.
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