Symptoms of a Rathke Cleft Cyst

While many Rathke cleft cysts (RCCs) are found by accident and cause no symptoms, others can make their presence known by pressing on nearby structures or the pituitary gland itself. Because the pituitary gland is the “control center” for your body’s hormones, these symptoms can affect everything from your energy levels to how a child grows.

It is important to remember that most symptoms of an RCC develop very slowly over many months or years. They are generally grouped into two categories: mechanical symptoms (caused by the physical pressure of the cyst) and endocrine symptoms (caused by changes in hormone levels).

Mechanical Symptoms: Pressure and Vision

The most common mechanical symptoms are headaches and changes in vision.

• Headaches: These are often the most frequent symptom reported by patients ^[1]. Interestingly, the size of the cyst doesn’t always predict how bad the headache will be; even cysts smaller than 10 millimeters can cause significant, chronic pain ^[2]. These headaches are often felt in the forehead (frontal) or directly behind the eyes (retro-orbital) ^[3].
• Vision Loss: If the cyst grows upward, it can press on the optic chiasm, the part of the brain where the eye nerves cross ^[4]. This often causes a specific type of vision loss called bitemporal hemianopsia, where you lose your peripheral (side) vision ^[5]. Because this happens slowly, many people don’t realize they are losing their side vision until they start accidentally bumping into doorways or furniture.

Endocrine Symptoms: Hormone Deficiencies

When an RCC presses on the pituitary gland or its stalk, it can disrupt the production of vital hormones. This is called hypopituitarism. The symptoms depend on which “axis” (hormone pathway) is affected.

Growth and Development (Children)

In children, the most common sign of a pituitary issue is growth failure or a significantly slowed growth rate ^[6].

• Short Stature: A child may stop “outgrowing” their clothes or fall behind their peers in height ^[7].
• Delayed Puberty: The cyst may prevent the release of hormones that trigger puberty, leading to a delay in physical development ^[8].

Energy and Reproductive Health (Adults)

In adults, hormone deficiencies often manifest as changes in energy, mood, and sexual function.

• Sexual Dysfunction: Men may experience a lower sex drive (libido) or erectile dysfunction due to low testosterone ^[9].
• Irregular Menses: Women may experience irregular periods or periods that stop entirely ^[10].
• Fatigue and Weakness: Deficiencies in thyroid-stimulating hormone (central hypothyroidism) or growth hormone can lead to profound exhaustion, weight changes, and feeling cold all the time ^[10][6]. (Note that fatigue is nonspecific and can have many causes).

Water Balance: Diabetes Insipidus

Sometimes the cyst affects the back part of the pituitary gland function, which stores vasopressin (the hormone that controls how your body manages water). This leads to central diabetes insipidus (DI). This is not related to “sugar” diabetes.

• Polydipsia: An intense, unquenchable thirst ^[11].
• Polyuria: Producing very large amounts of pale, dilute urine, leading to frequent bathroom trips throughout the day and night (nocturia) ^[12].

Because DI causes you to lose free water, it puts you at risk for high blood sodium (hypernatremia) if you cannot drink enough to keep up.

Adrenal Function: A Hidden Risk

One of the most critical deficiencies involves ACTH, the hormone that tells your adrenal glands to produce cortisol (the “stress hormone”). This is called central adrenal insufficiency. Symptoms can be subtle—such as nausea, dizziness when standing, and weight loss—but they can become dangerous if the body is under stress from an illness or injury ^[13][14].

🚩 Red Flags: When to Seek Emergency Care

While most RCC symptoms are chronic and slow-moving, certain situations require immediate medical evaluation. These can occur from acute inflammation, bleeding in the cyst area, or dangerously low hormone levels.

Seek emergency medical care immediately if you or your child experience:

• Sudden, Severe Vision Change: A rapid loss of side vision or a sudden “blurring” of sight ^[15].
• The “Worst Headache of Your Life”: A sudden, “thunderclap” headache, especially if accompanied by vomiting or a stiff neck ^[16].
• Adrenal Crisis: Severe weakness, confusion, persistent vomiting, abdominal pain, or fainting. This is often triggered by a common illness like the flu in someone whose body cannot produce enough cortisol ^[17][13]. If you have diagnosed adrenal insufficiency and are vomiting or cannot keep oral hydrocortisone down, immediately administer your emergency injection according to your plan and call emergency services.
• Severe Hyponatremia (Low Salt): This can happen if hormones that regulate water are severely imbalanced. Look for confusion, seizures, extreme drowsiness, or unexplained vomiting ^[18][19]. Do not try to self-adjust your fluid intake or DI medications.
• Extreme Dehydration: If you have intense thirst and are urinating large amounts but cannot keep up with fluids, leading to lightheadedness or a racing heart ^[20].