PKU Treatment Guidelines

PKU Treatment Guidelines photo

Maintaining blood Phe levels in the range of 120–360 μmol/L (2–6 mg/dL) at all ages is essential for all people with PKU.

Guidelines for the treatment of PKU have recently been updated to ensure optimal health outcomes. All people whose Phe levels remain higher than 360 μmol/L (6 mg/dL) should be treated, regardless of age.  In addition, you should aim to maintain your levels within 120–360 μmol/L (2–6 mg/dL).Previously, some people relaxed or abandoned the low-Phe diet after 12 years of age, but then experienced symptoms of high Phe levels, including deficits in executive function, and psychiatric symptoms such as depression and anxiety. These symptoms can make it difficult to function in school and in the workplace.

  • To learn more about the new medical and dietary guidelines. CLICK HERE
  • To learn more about the development of treatment guidelines over the years. CLICK HERE

If you were treated before the year 2000, you may have relaxed or abandoned your low-Phe diet. You may have experienced some of the symptoms associated with uncontrolled Phe levels, which may contribute to difficulties in resuming the low-Phe diet required to maintain metabolic control. Resuming your low-Phe diet is critical to ensure your health and well-being.

The PKU diet and lifestyle is really hard to manage, but it's worth it! You can't forget that you're keeping your brain healthy, and your brain is really important for pretty much everything.

Leah, 15 years old