Share your smarts!

Do you have a tip or insight that might help others with PKU? Tell the PKUniverse now.

PKU Blogs

Connecting with someone who knows what you are going through can help.

Follow a blogger in the PKUniverse!

Pheówhy lower is better*

Being your best every day

For many years, it was thought that high Phe was only an issue for the developing brain of babies and children. But today, doctors know that high Phe is toxic for the brains of adults too. High Phe causes problems such as:1,3,4,5,6

High Phe takes away clear thinking, control, and focus

  • Lower intelligence (IQ)
  • Bad moods, being cranky or irritable
  • Feeling "foggy"
  • Thinking and responding slower
  • Depression
  • Feeling anxious
  • Not being able to focus or pay attention

Every 100 micromol/L increase in Phe can result in a 4 point drop in IQ

It doesn't take a lot of Phe to cause problems. For instance, research shows that IQ can drop as much as 4 points for every 100 μmol/L in average lifetime Phe.3 For some people, that can be a big loss of IQ.3 Protecting your IQ by keeping Phe low can help you be your best so you can get the most out of your life.1,2

High Phe causes mood problems

Adults with PKU are much more likely to have depression, anxiety, and other problems, compared to people without PKU. The higher a person’s Phe, the more likely he or she is to have these problems compared to people with lower Phe. 1,6

People with PKU are more likely to have mood problems

PKU doesn't play fair. But you can win anyway.

To control Phe, you need to do tasks like plan your meals, record Phe and resist off-diet foods. To do these tasks, you need clear thinking, optimism, control, and focus — the very things that high Phe takes away from you.

In other words, the higher your Phe, the harder it may be to get your Phe low.

On the other hand, the lower you keep your Phe, the easier it may be to keep Phe low. When your Phe is always low, your brain is always at its best. You'll be able to think clearly, make smart plans and follow through with the steps that keep you healthy.1,3,4,5

Ask for help

It's also a good idea to talk with a therapist if you feel low, moody or anxious. The therapist can give you support and ideas, and help you find ways to feel better faster.6 Be sure to tell the therapist you have PKU, and that high Phe could be making you feel this way.

Also, ask your doctor or dietitian if getting Phe lower could help. Work with them to get your Phe lower.

* Lower is better until you get Phe into the normal range of 1-2 mg/dL. Going lower than 1-2 mg/dL can be unhealthy. Talk with your doctor about the right target range for you.1,2

In people living with PKU, high Phe levels can cause mood problems including depression.6

It may be depression if you have many of the following symptoms:8

  • Overall sad mood, state of worry and/or feeling "empty"
  • Not wanting to do the activities you like, or enjoying them when you do
  • Being hungry all the time, or not at all. Losing weight without meaning to, or gaining a lot of weight very fast.
  • Trouble sleeping or sleeping too much
  • Feeling tired all the time
  • Body movements or actions you are not aware of
  • Feeling worthless or not having hope
  • Inability to focus or make decisions
  • Not wanting to live
    (If you have thoughts about not wanting to live, contact a doctor right away)

High Phe may be causing you to feel this way. If you suspect depression, talk with a doctor or therapist.6

High Phe levels can cause a range of mood problems including social anxiety.6

Here are common symptoms of social anxiety:8

  • Fear of doing something that will be embarrassing
  • Fear that other people are judging you
  • Not doing activities because of anxiety
  • Anxiety and stress when doing something
  • Panic attacks — sudden and strong fear that happens without warning and causes body symptoms like blushing, heart pounding, sweating, stomach ache, and trembling

High Phe may be causing you to feel this way.6,9 If you suspect social anxiety, talk with a doctor or therapist.6

High Phe levels can cause a range of mood problems including "panic disorder."6,9

Panic disorder is when you often have panic attacks, or worry about having panic attacks, or avoid events or places because you're afraid of having a panic attack.

A panic attack is a strong, sudden fear that has body symptoms such as:8

  • Strong or fast heartbeat
  • Sweating
  • Trembling or shaking
  • Hard time breathing
  • Choking
  • Chest pain
  • Upset stomach
  • Being dizzy or faint
  • Feeling "unreal" or detached
  • Fear of losing control or going crazy
  • Tingling or numbness
  • Chills or hot flushes
  • Fear of dying

Symptoms of a panic attack are usually strongest in the first 10 minutes. People who have had a panic attack in one kind of place (like a crowded room, or elevator, or bridge) may come to fear that kind of place and avoid it.8

If you have frequent panic attacks and think you might have panic disorder it may be caused by high Phe. You should talk with a doctor or therapist.6

High Phe can cause a range of mood problems including agoraphobia.9

Studies show people with PKU are more likely to be afraid of going out, for fear of having a panic attack or other problem in public. This is a condition known as agoraphobia.9

It may be agoraphobia if you:8

  • Worry about being in places where you would be unable to get away or get help if you were to have a panic attack or other problem
  • Avoid doing activities you would like to do because of this worry

If you are having symptoms of agoraphobia, it may be caused by high Phe. You should talk with a doctor or therapist.9

  • Symptoms of Depression
  • Social Anxiety Symptoms
  • Symptoms of a Panic Disorder
  • Agoraphobia Symptoms

Next: How to get Phe lower