Pituitary apoplexy: symptoms, treatment and recovery

Pituitary apoplexy is rare, but it is one of the true emergencies in hormone medicine. Knowing the warning signs can save someone’s eyesight and even their life. If you or someone near you has a sudden, severe headache with vision problems, do not wait to read further: go to an emergency department now.

What is pituitary apoplexy?

The pituitary is a pea-sized gland at the base of the brain, sitting just below the nerves that carry vision from the eyes. It controls many other hormone glands, including the thyroid, adrenals and ovaries or testes.

Small, non-cancerous growths called pituitary adenomas (pituitary tumours) are fairly common. Many cause no problems and are never found. In pituitary apoplexy, such a tumour suddenly bleeds or loses its blood supply (infarction). It swells quickly inside a tight space and presses on the surrounding nerves, blood vessels and the normal pituitary gland.

The word “apoplexy” simply means a sudden event. In many people, the tumour was not known about before the apoplexy happened.

What are the symptoms?

Symptoms usually come on over hours to a day or two:

• Sudden, severe headache, often behind the eyes or across the forehead, and often described as the worst ever. Vomiting is common.
• Vision problems, such as blurred vision or loss of the outer field of vision, from pressure on the optic nerves.
• Double vision or a drooping eyelid, from pressure on the nerves that move the eyes.
• Drowsiness, confusion or fainting.
• Low blood pressure and weakness, from a sudden drop in cortisol, the body’s stress hormone, which the pituitary normally controls. This part can be life-threatening.

Because the headache is so sudden, pituitary apoplexy can be mistaken for a brain bleed or meningitis, which is why scans are needed.

Can it happen without symptoms?

Sometimes a scan shows old bleeding inside a pituitary tumour in someone who never had symptoms. Doctors do not call this pituitary apoplexy, because the term is used only when there are sudden symptoms. It still needs follow-up with an endocrinologist.

What can trigger it?

Often there is no obvious trigger. Known triggers include:

• Major surgery, especially heart surgery, or procedures such as angiography
• Blood thinners or bleeding disorders
• Very high or very low blood pressure
• Head injury
• Some hormone medicines and hormone stimulation tests
• Pregnancy, which enlarges the pituitary

Apoplexy is most common in non-functioning tumours, which do not make excess hormones. Among hormone-producing tumours, prolactinomas are the most common type involved.

Is Sheehan’s syndrome the same thing?

Not quite. Sheehan’s syndrome is damage to the pituitary from loss of blood supply after heavy bleeding during childbirth. It was once common in India and still occurs where access to obstetric care is limited. It is related, but it usually happens in a normal pituitary rather than a tumour, and the symptoms often appear slowly, such as failure to breastfeed or periods not returning after delivery. It is usually considered separately from pituitary apoplexy.

How is it diagnosed?

In the emergency department, doctors will:

• Check your vision, eye movements and level of alertness.
• Take blood for cortisol, sodium, thyroid and other pituitary hormones.
• Arrange a brain scan. A CT scan is often done first because it is quick and shows fresh bleeding. An MRI of the pituitary gives the clearest picture and is the preferred scan once you are stable.

How is it treated?

Steroids first. Many people with apoplexy have dangerously low cortisol. Doctors give hydrocortisone, a steroid, through a drip early, especially if blood pressure is low, vision is badly affected or the person is drowsy. This can be life-saving.

Then a decision about surgery. Care is planned by an endocrinologist, a neurosurgeon and an eye specialist together.

• Surgery, usually through the nose (transsphenoidal surgery), is advised when vision is severely reduced or getting worse, or when consciousness is reduced. When needed, it is usually done within the first week.
• Close observation without surgery suits many people with milder symptoms and stable vision. Vision, eye movements and blood tests are checked regularly, and surgery is done if things get worse. Studies suggest outcomes can be similar with either approach in carefully selected people.

What happens after recovery?

Most people survive pituitary apoplexy, and headache and eye movement problems usually improve over weeks to months. Vision often improves too, especially if pressure on the nerves is relieved early.

The longer-term issue is hormones. Many people, roughly two out of three or more, are left with one or more pituitary hormone deficiencies. These may include:

• Cortisol, needing daily steroid replacement and sick-day rules.
• Thyroid hormone, needing thyroxine. In this situation, TSH is not a reliable guide, so doctors use free T4 instead. Our thyroid report reader explains why TSH and T4 must be read together.
• Sex hormones and growth hormone.
• Rarely, water balance (vasopressin), causing excess thirst and urination.

Hormone tests are repeated a few weeks after the event and then regularly. Replacement is often lifelong. Thyroid replacement after pituitary damage is usually with levothyroxine; read about how T3 and T4 tablets differ.

You will also need repeat MRI scans to watch for any regrowth of the tumour, and periodic eye checks.

What should you ask your doctor?

• Which of my pituitary hormones are low, and which do I need to replace?
• What are my steroid sick-day rules, and should I carry a steroid alert card?
• When is my next MRI and eye check?
• Is it safe for me to drive or travel?

Pituitary conditions need long-term care from an endocrinologist. Learn who an endocrinologist is, or book a consultation for follow-up after a pituitary event.