PKU as an Adult

All adults with PKU should have annual follow-up by a metabolic team.

It is recommended that adults need to keep their phenylalanine levels controlled throughout their life. You can read this article on the importance of diet for life.

You can find resources about returning to the PKU diet here.

It can be very challenging to stay on the PKU diet through your whole life. NSPKU is calling for improved support for all adults with PKU to cope with this lifelong condition.

Useful dietary information:

The Dietary Information Booklet Dietary Information for the Treatment of Phenylketonuria

The "ready reckoner" for calculating exchanges Ready Reckoner

Guide to food exchanges (colour guide) Food Exchanges List 2020

Guide to branded free foods Branded Exchange Free Foods List

Guide to low protein baking ingredients (colour guide) Baking Guide

Ice Lollies, ice creams and sorbets (colour guide) Ice Lolly Guide 2020

Tom’s story

Tom Chimiak, a young professional film-maker, talks to NSPKU Conference 2019 about managing his condition alongside his busy life. (28 minutes)

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Please Note
The dietary treatment for PKU varies for each person so all information produced by the NSPKU is for guidance only.  NSPKU publications should only be used in consultation with your own dietitian and/or doctor. Please see here for copyright details.