Having PKU should not prevent you from gaining or maintaining excellent general health. As with the rest of the adult population, eating a healthy varied diet, enjoying good quality sleep and staying physically active, all have a part to play in this. However, if you have PKU, an additional consideration is keeping your Phenylalanine (phe) levels within the levels recommended for you.
Knowing what can affect your phe levels can help you understand how to cope with levels if they increase. Some of the factors that might affect your phe levels include:
Your metabolic team will be able to give you more guidance on these, so you will know what to expect.
When you are unwell, your calorie needs automatically increase as your body tries to fight the illness and you might also find that your appetite is reduced. This can result in your body breaking down its protein stores from the muscles to use as a source of energy. This breakdown of protein releases phe into the blood causing phe levels to increase.
It is important that you contact your metabolic team or GP if you are unwell and struggling to eat and drink enough.
If you must take medication when unwell, remember, some medications contain aspartame, which is a source of phe, and these must be avoided (unless your doctor or metabolic team tells you otherwise). Always check the ingredients of medications with your metabolic team or pharmacist before taking.
Here are some suggestions on how to minimise the rise in your phe levels during illness:
Many adults in the UK follow an inactive lifestyle. Research suggests that 39% of adults are failing to reach the governments recommendations of 150 minutes of exercise a week.
A sedentary lifestyle is linked to obesity, heart disease and type 2 diabetes. Your current job may require you to sit for many hours a day. There is nothing stopping you from being active or competing in a sport of your choice. A sedentary lifestyle can be harmful to your health, so physical activity is encouraged wherever possible and through all life stages. One of the many benefits of regular exercise (or manual labour) is that your body will use protein to build muscle. Phe, as an amino acid, is a building block of protein so, the phe from your diet will be used to help build muscle.
For more information on PKU and exercise see Physical Activity and Exercise.
Eating too much natural protein (over your allocated phe exchanges) will quickly lead to an increase in blood phe.
Also, not taking your protein substitute will increase your blood phe further as your overall diet will lack protein and your body will again start breaking down your muscle stores releasing further phe into your blood. For more information on balancing your diet, see How Much Should I Eat?