Sheehan Syndrome

What is Sheehan syndrome?

Sheehan syndrome is a rare condition that affects your pituitary gland. It happens when you lose too much blood during childbirth.

If you have Sheehan syndrome, severe blood loss deprives your pituitary gland of the oxygen it needs to work properly. As a result, some of the tissue in your pituitary gland dies.

Your pituitary gland sits at the base of your brain. It grows during pregnancy, making it susceptible to injury. Damage to your pituitary gland can have widespread effects on your body because it’s a “master gland.” Not only does your pituitary gland secrete hormones that spur important processes in your body, but it also tells other glands to secrete hormones. Your pituitary gland helps regulate processes that impact your brain, reproductive system, muscles, skin, energy and mood.

Sheehan syndrome is also called postpartum hypopituitarism or postpartum pituitary necrosis.

How does Sheehan syndrome affect your body?

The pituitary damage Sheehan syndrome causes can affect your body’s ability to produce important hormones, including:

• Adrenocorticotrophic hormone (ACTH): Stimulates the production of your body’s primary stress hormone, cortisol. Cortisol maintains your blood pressure and blood sugar levels. It helps your body respond to stress.
• Thyroid-stimulating hormone (TSH): Stimulates the thyroid gland, which regulates metabolism, energy and your nervous system.
• Growth hormone (GH): Helps maintain your bone density, muscle mass and fat distribution.
• Follicle-stimulating hormone (FSH): Stimulates estrogen production in your ovaries and causes an egg to mature every month.
• Luteinizing hormone (LH): Stimulates ovulation (when your ovaries release an egg).
• Prolactin (PRL): Stimulates lactation during pregnancy and allows you to breastfeed.

How common is Sheehan syndrome?

Due to advances in medical care, Sheehan syndrome is very rare. It occurs in approximately 5 out of every 100,000 births. It’s more common when there’s inadequate emergency care available to prevent life-threatening blood loss during childbirth.

What are the symptoms of Sheehan syndrome?

You may notice certain symptoms of Sheehan syndrome right away. Sometimes, symptoms happen gradually over several months or even several years.

Symptoms may include:

• Trouble breastfeeding or your milk never “coming in” after your baby is born.
• No longer getting periods (amenorrhea) or having irregular periods.
• Thinning vaginal walls and vaginal dryness (vaginal atrophy) that make sexual intercourse painful.
• Breast shrinkage and loss of your pubic and armpit hair.
• Fatigue, low energy and trouble concentrating.
• Low sex drive.
• Low blood pressure.
• Dry skin.

You may not notice symptoms until you experience a stressful life event — like surgery, an infection or injury — and symptoms start because your body doesn’t have enough stress hormone to respond to the stressor (cortisol). This is called an adrenal crisis. An adrenal crisis requires immediate medical attention.

What causes Sheehan syndrome?

Severe blood loss during childbirth causes Sheehan syndrome. Your pituitary gland grows during pregnancy and can even double in size. The size increase makes it especially vulnerable to injury if it doesn’t get enough oxygen. Losing too much blood or experiencing a severe drop in blood pressure during childbirth deprives your pituitary gland of the oxygen it needs to stay healthy.

As a result of this damage, your pituitary gland can’t produce enough of the hormones you need to regulate certain body functions. Insufficient hormones can negatively impact several of your body’s common functions. Hormone deficiencies resulting from a pituitary gland injury can slow or stop processes related to your reproductive system, nervous system and more.

Is Sheehan syndrome genetic?

No, you can’t inherit the condition from your biological parents.

How much blood do you lose to cause Sheehan syndrome?

Typically, you would need to lose a life-threatening amount of blood with a severe drop in blood pressure or shock to be at risk for Sheehan syndrome. Fortunately, your healthcare team will be prepared for emergencies like this, so your risk of developing Sheehan syndrome is low.

What are the risk factors for Sheehan syndrome?

Sheehan syndrome only occurs after a person loses a lot of blood and experiences a drastic drop in blood pressure during childbirth. Conditions that increase your risk of severe bleeding during childbirth (and Sheehan syndrome) include:

• Giving birth to more than one baby (twins, triplets or more).
• Giving birth to a large baby.
• Placental abruption.
• Placenta previa.
• Preeclampsia.
• Having an assisted delivery (forceps or vacuum extraction).

What are the complications of Sheehan syndrome?

Sheehan syndrome can be life-threatening if it causes an adrenal crisis later in your life. Other complications of the condition include:

• Low blood pressure.
• Losing weight or muscle mass.
• Irregular periods or trouble conceiving another pregnancy.

Your healthcare provider can help you manage or avoid these complications with the right treatment.

How is Sheehan syndrome diagnosed?

Your healthcare provider may use the following to make a diagnosis if you’re experiencing symptoms of Sheehan syndrome:

• Medical history. Tell your provider about any blood loss or other complications you experienced during previous childbirths. Let them know about any symptoms afterward (for instance, having trouble producing breast milk or not getting a menstrual period). Tell your provider about any symptoms you’re experiencing, including when they occur and what improves them.
• Blood tests. Your provider will take a sample of your blood and check the hormone levels that relate to your pituitary gland’s functioning.
• Imaging tests. An MRI  (magnetic resonance imaging) can allow your provider to rule out other causes of your symptoms, like a tumor on your pituitary gland. They may order a CT scan (computed tomography scan) if the MRI results are inconclusive.

What blood tests are used for diagnosing Sheehan syndrome?

Your provider may check your hormone levels directly, or they may see how your pituitary responds to certain stimulants.

• Tests to check hormone levels. Your provider may check hormones like ACTH, FSH, LH, TSH, T4, estradiol (a type of estrogen), IGF-1, and cortisol.
• Stimulation tests. Your provider may give you medicine or an injection to stimulate the production of certain pituitary hormones so that they can assess how your pituitary gland responds.

How is Sheehan syndrome treated?

You’ll have to take hormones for the rest of your life to replace the ones that your body is no longer making. This is sometimes referred to as hormone therapy. The exact amounts of hormones you’ll need and how you’ll take them will vary depending on your diagnosis and symptoms. These hormones may include:

• Sex hormones: You can take estrogen and progesterone to help regulate your periods and help with premature menopause symptoms. Hormones like LH and FSH can help with ovulation, which can help you get pregnant.
• Corticosteroids: You can take hydrocortisone or prednisone to make up for an adrenocorticotropic hormone (ACTH) deficiency. Your dosage may need to be adjusted if you’re going through a high-stress situation (like surgery) that requires your body to ramp up cortisol production.
• Thyroid hormones: You can take levothyroxine (Levoxyl®, Levo-T®, Synthroid®, Unithroid®) to make up for TSH deficiency. The dosage of medication will be adjusted based on your thyroid hormone levels.
• Growth hormones: Taking growth hormones may help with muscle mass and bone density.

In most cases, an endocrinologist will work with you on treatment, as well as during regular checkups, to make sure your hormone levels stay within a healthy range.

Can I prevent Sheehan syndrome?

No, you can’t prevent Sheehan syndrome. All your healthcare providers can do is manage blood loss and blood pressure during your labor and delivery.

Take comfort in knowing that Sheehan syndrome is rare. Having a capable care team that can prevent pregnancy complications like severe blood loss greatly reduces your risk of Sheehan syndrome.

What can I expect if I have Sheehan syndrome?

With treatment, the prognosis for Sheehan syndrome is excellent. Most people don’t have serious complications. Many have successful pregnancies following their diagnosis, with careful observation from their care team.

You’ll need to see your endocrinologist for regular checkups to ensure that you’re receiving the right amount of medication you need to make up for any hormone deficiencies. Part of your follow-up care will involve regular blood draws to check hormone levels.

What is the life expectancy of someone with hypopituitarism?

There are no changes to your life expectancy if you have Sheehan syndrome. You’ll need treatment for the rest of your life, but you can expect a normal life expectancy.

When should I contact my healthcare provider?

Contact your healthcare provider if you have symptoms of Sheehan syndrome, especially if you lost a lot of blood during childbirth. Your provider can order tests to determine if you have the condition.

When should I go to the emergency room?

You should seek emergency care if you’re experiencing an adrenal crisis, which can be life-threatening without treatment. Symptoms include:

• Light-headedness.
• Abdominal, lower chest or back pain.
• Fever.
• Weakness.
• Nausea and vomiting.
• Confusion or loss of consciousness.

If your healthcare provider believes you’re at risk, you may need to wear a medical alert bracelet to get immediate care in an emergency.

What questions should I ask my healthcare provider?

Questions you may want to ask your provider include:

• How will Sheehan syndrome affect my body?
• How will treatment improve my symptoms?
• Is pregnancy possible with Sheehan syndrome?
• How often will I need blood tests?
• Which medications or treatments do you recommend?
• Will I need to wear a medical alert bracelet?