21/06/2026
Exhaustion. Depression. Anemia. Sleep problems.
For a long time, Gavin searched for answers. Because he lives with PKU, many people assumed these symptoms were related to his condition. However, his phenylalanine (Phe) levels were well controlled.
When the symptoms continued, Gavin pushed for further testing. The cause turned out to be a pituitary adenoma.
But what is a pituitary adenoma?
The pituitary gland is a very small gland located at the base of the brain. Even though it is tiny, it helps control many important functions in the body, including energy levels, sleep, mood, growth, and hormone production.
A pituitary adenoma is a growth in this gland. It is usually not cancerous, but it can affect how the gland works and cause a wide range of symptoms.
For Gavin, these included exhaustion, depression, anemia, and sleep problems.
Other people may experience headaches, vision problems (such as blurred vision or loss of side vision), dizziness, muscle weakness, unexplained changes in weight, changes in mood or anxiety, changes in sexual health or fertility, excessive sweating, or changes in how their body grows and develops.
Not everyone experiences the same symptoms, and many of these symptoms can also be caused by other health conditions.
Gavin's story reminds us of something important: not every symptom experienced by a person with PKU is caused by PKU.
If something doesn't feel right, and symptoms continue despite good metabolic control, it is important to speak with your healthcare team and keep looking for answers.
Have you heard of a pituitary adenoma before reading Gavin's story?
