Diabetes Insipidus (DI)

Diabetes insipidus is a rare condition in which your body produces too much urine and isn’t able to properly retain water. People with this problem feel very thirsty even after having something to drink, and often have colorless, odorless urine.

There’s no cure for diabetes insipidus. It can be chronic or temporary depending on the person and cause, but treatment options are available to ease symptoms.

What Is Diabetes Insipidus? 

Diabetes insipidus is a rare disease in which people have incessant thirst and overproduce urine. It’s caused by a lack of a hormone called vasopressin, says Kevin Peterson, MD, MPH, the vice president of primary care at the American Diabetes Association.

Vasopressin (sometimes called antidiuretic hormone or ADH) helps your kidneys balance the amount of fluid you’re carrying in your body.

Diabetes insipidus is often confused with diabetes mellitus, which is commonly referred to as just “diabetes” and involves high blood sugar levels (and is further classified as either type 1, type 2, or gestational diabetes). But diabetes mellitus and diabetes insipidus are not related.

“It’s an often misunderstood condition so it’s important to spend some time trying to understand your disease, how your medicine works, and how to adapt your fluid intake and be in touch with your body,” says Sharon Wardlaw, MD, a neuroendocrinologist at the NewYork-Presbyterian/Columbia University Irving Medical Center in New York City.

Types of Diabetes Insipidus

With diabetes insipidus, patients can’t properly balance the fluid levels in their body, but the cause of the fluid imbalance depends on the type of diabetes insipidus. There are four types.

• Central Diabetes Insipidus This is the most common type of diabetes insipidus and happens because your body isn’t producing enough vasopressin. This typically happens when your pituitary gland or hypothalamus — both located in the brain and responsible for producing and managing levels of vasopressin — is damaged.

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• Nephrogenic Diabetes Insipidus This type of diabetes insipidus occurs when your pituitary gland releases enough vasopressin, but your kidneys don’t respond to the hormone properly and can’t retain water, resulting in frequent trips to the bathroom.

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• Dipsogenic Diabetes Insipidus In this case, diabetes insipidus is caused by an issue in the hypothalamus that’s unrelated to vasopressin production but causes you to feel thirsty constantly. Because you’re drinking more liquids, you may need to urinate more often.

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• Gestational Diabetes Insipidus Gestational diabetes insipidus is a rare, temporary condition that can develop during pregnancy. It’s triggered when your placenta makes too much of an enzyme that breaks down your vasopressin. People carrying more than one baby in pregnancy are more likely to develop the condition.

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The hallmark signs and symptoms of diabetes insipidus include:

• You're very thirsty, often with a preference for cold water.

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• You produce large amounts of urine.

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• You get up often during the night to drink water and urinate.

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• Your urine is pale or colorless.

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• You're tired from frequent nighttime urination and interrupted sleep.

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“The most obvious indication is the urination — this very dramatic increase in volume. Patients will tell you the urine looks essentially almost like water,” he says.

• Large amounts of pale urine that result in heavy, wet diapers
• Bed-wetting
• Being very thirsty, with a preference for drinking water and cold liquids
• Weight loss
• Poor growth
• Vomiting
• Irritability
• Fever
• Constipation
• Headache
• Problems sleeping
• Vision problems

Diabetes insipidus can lead to dehydration if you stop drinking fluids while persistently going to the bathroom to urinate.

Diabetes insipidus is caused by the body’s inability to make or use vasopressin, which helps your kidneys balance the amount of fluid you’re carrying in your body, Peterson says.

According to Dr. Wardlaw, the most common causes of diabetes insipidus include:

• Damage to your hypothalamus or your pituitary gland from surgery, a major head injury, or skull fracture
• Tumors that affect the hypothalamus or pituitary gland
• An autoimmune reaction that causes your immune system to damage healthy cells that produce vasopressin
• An inherited gene mutation — in the hereditary form of nephrogenic diabetes insipidus, there are at least two gene mutations, for example
• Certain medications, such as lithium and tetracycline
• Low levels of potassium in the blood
• High levels of calcium in the blood
• Certain mental health conditions, such as schizophrenia or obsessive-compulsive disorder, for dipsogenic diabetes insipidus

Meanwhile gestational diabetes insipidus is a rare condition that can affect pregnant people. It happens when the placenta produces too much of an enzyme that breaks down vasopressin. It tends to be more common in pregnancies with more than one baby, Cleveland Clinic notes.

If you’re grappling with excessive thirst and too many trips to the bathroom that are interrupting your sleep at night and work or school during the day, this may be a warning to get tested for diabetes insipidus, Dr. Salvatori says.

Because diabetes insipidus and diabetes mellitus share the features of frequent thirst and urination, a large component of diagnosing diabetes insipidus is to rule out either type of diabetes mellitus and other conditions, he says.

Your doctor may ask you questions, such as:

• When did your symptoms start?
• How much more are you urinating than usual?
• How much water are you drinking every day?
• Do you get up at night to urinate and drink water?
• Are you pregnant?
• Are you being treated or have you recently been treated for other medical conditions?
• Have you had any recent head injuries, or have you had neurosurgery?
• Has anyone in your family been diagnosed with diabetes insipidus?

Keep in mind, there are several types of diabetes insipidus, with different causes and potential complications. Your doctor may order several tests to determine a correct diagnosis.

Reaching a diagnosis may include tests, such as:

• Water deprivation test, which is the baseline test for identifying diabetes insipidus. It involves not drinking any liquids at all for several hours to see how your body responds. If you have diabetes insipidus, you’ll keep urinating large amounts of diluted, light-colored urine — while someone without the condition would urinate a small amount of concentrated, dark yellow urine. Your doctor will make sure you’re closely monitored during this test because it can trigger dehydration. They’ll also check for changes in your body weight, how much urine your body is producing, the concentration of the urine, sodium levels in the blood, and blood concentration.

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• Blood tests to check vasopressin levels.

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• Urine analysis to check for the concentration levels in your urine. If your urine contains too much water, this is indicative of diabetes insipidus.

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• Imaging tests, such as an MRI — magnetic resonance imaging — to screen for issues in your pituitary gland or hypothalamus.

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• Genetic testing, especially if other people in your family have been diagnosed with diabetes insipidus or have had problems with too much urinating.

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There is no cure for diabetes insipidus, but Salvatori says there is a lot that doctors and patients can do to manage the condition, making it less disruptive at work, school, and bedtime.

Which treatment or treatment options are right for you depends on the type of diabetes insipidus you have.

Medication Options

Certain medications can help people with diabetes insipidus keep their symptoms at bay.

• Desmopressin is the first-line treatment for central diabetes insipidus. Essentially, desmopressin replaces the missing hormone, vasopressin. You can take it via an injection, a pill or a nasal spray. It’s also used to treat gestational diabetes insipidus. Salvatori says this is the primary therapy given to patients with central diabetes insipidus because it reduces the amount of urine produced by the kidneys.

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• Thiazide diuretics reduce the amount of urine your kidneys produce.

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  This medication is often paired with nonsteroidal anti-inflammatory drugs — or NSAIDs — such as ibuprofen, to help cut urine volume. This route is often used to treat nephrogenic diabetes insipidus, which is more complicated and may take a combination of approaches.

Additionally, your doctor may recommend changing other medications you take, if certain medications or drug interactions between several prescriptions are triggering diabetes insipidus symptoms.

Because there is no cure for diabetes insipidus, certain lifestyle adjustments are helpful, especially if you don’t have severe symptoms that require medical intervention.

• Stay hydrated. If you have a mild case of diabetes insipidus, you may not need medication at all, but your doctor may recommend you keep drinking water to avoid dehydration with the consistent need to urinate. Figuring out how much you need to drink will vary from person to person. Salvatori says patients will often work with their endocrinologist to gauge the right amount of water to drink to avoid dehydration while managing a reasonable amount of bathroom breaks. Carry water with you to avoid being a situation where you don’t have access to water.

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   And let healthcare providers know if they’ve advised you to limit water intake (or avoid drinking water all together) to prep for a surgery or procedure.
• Watch your sodium intake. Because your body’s kidneys aren’t responding normally to vasopressin, your doctor may suggest you stick to a low sodium diet if you have nephrogenic diabetes insipidus.

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  This adjustment will help to lower the amount of urine your kidneys make.
• Manage your medication dosage and schedule. Salvatori cautions that patients and their physicians have to tread carefully not to overtreat the condition, which can cause low sodium in the blood. He says your doctor will work with you to gauge how much desmopressin you may need and when to take it. For example, most patients take it in the evenings so they can sleep at night without trips to the bathroom. But if you take too much, your body will hold onto water and dilute sodium levels, creating a risk of low sodium. “My main message to patients is always, if in doubt, take a little bit too little rather than a bit too much medication.”

The duration of diabetes insipidus will vary from person to person, depending on its cause, Wardlaw says.

One of the more common causes of diabetes insipidus is a complication from a neurosurgery (one that affects or injures the pituitary gland). In these cases, diabetes insipidus usually goes away on its own after a few days to a few weeks because the pituitary gland will heal and regulate post-op, Wardlaw says.

Gestational diabetes insipidus will resolve within four to six weeks post-pregnancy as ADH levels in the body normalize again. But it may resurface in subsequent pregnancies, she says.

If the pituitary gland or hypothalamus is more severely damaged, the resulting diabetes insipidus can be permanent and incurable, says Wardlaw.

If you’re grappling with tumors near the pituitary, such as a craniopharyngioma, diabetes insipidus may be irreversible and incurable.

Finally, autoimmune and genetic forms of diabetes insipidus tend to be chronic (or lifelong) conditions, too.

• Feeling dizzy or lightheaded
• Feeling tired
• Having a dry mouth, lips and eyes
• Difficulty performing simple mental tasks
• Nausea
• Fainting

Another concern linked to diabetes insipidus is electrolyte imbalance, or low sodium, Wardlaw says. In this case, minerals called electrolytes, including sodium and potassium, may be diluted when you take desmopressin, which causes you to retain urine.

• Weakness
• Nausea
• Vomiting
• Loss of appetite
• Confusion

And don’t discount the nuisance that being perpetually thirsty and persistently going to the bathroom to urinate can be, Salvatori says — though, as long as you have access to a faucet and toilet, these symptoms aren’t necessarily dangerous.

Salvatori adds that if the diabetes insipidus is brought on by a tumor, it’s usually craniopharyngioma, which typically occurs either in childhood or old age.

Some conditions are linked to diabetes insipidus, including:

• Brain Tumors If a brain tumor is interfering with the hypothalamus or pituitary gland, both responsible for vasopressin production, diabetes insipidus can result. Surgery, from a head injury or for removing tumors, can also trigger diabetes insipidus.

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• Infections Infections that affect the brain, such as meningitis or encephalitis, may cause diabetes insipidus as the hypothalamus or pituitary gland are affected by the disease.

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• Kidney Disease In nephrogenic diabetes insipidus, your kidneys don’t respond properly to vasopressin. Kidney diseases, such as chronic kidney disease, kidney infection (pyelonephritis), and medullary sponge kidney, can all tamper with kidney function and lead to nephrogenic diabetes insipidus.

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