PKU Symptom Diary

For people with PKU, the symptoms of high or unstable blood Phe levels can occur slowly over time and can be difficult to recognise. Use the tool below to see if you or a loved one has been experiencing symptoms of PKU.

This diary should not be used as a diagnostic tool for PKU, but as a discussion guide for visits to your PKU clinic. The information that you submit in this diary is not monitored, processed or available to any third parties and is for your personal use and discussions with your physician.

Select your role in the drop down below, respond to the questions, and click SUBMIT to view your results.

Which role best describes you?

Enter the most recent blood Phe level (if known)

Test date (if known)

It is difficult for me to focus

Never 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

Never 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.

Is it PKU?

PKU Symptom Diary

PKU Symptom Checker

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