Diabetes Insipidus

What is diabetes insipidus?

  • Diabetes insipidus (DI) is a disease where you cannot concentrate your urine. With DI, you will urinate large amounts of dilute (watered down) urine. You may urinate more than three liters of fluid each day. The amount of urine you make is controlled by chemicals in your body called hormones. Antidiuretic hormone (ADH), or L-arginine vasopressin (AVP), is made to decrease the amount of water lost in your urine. ADH is made in an area of your brain called the hypothalamus. It is stored in a gland under your hypothalamus called the pituitary gland. Your pituitary gland releases ADH into your blood to bring a message to your kidneys. This message tells your kidneys to decrease the amount of water in your urine.

  • When you have DI, your body does not make, or respond to ADH the way it should. Your body will not hold on to needed water, and you may become very ill. When your body loses too much water, you become dehydrated. Severe dehydration can cause damage to your organs such as your kidneys. DI may be a short term illness, or you may have it for the rest of your life. Treatment may help your body make and use ADH properly. Treatment may help prevent illness and organ damage from losing large amounts of body fluid. Treatment may save your life.

What are the most common types of diabetes insipidus?

  • Central diabetes insipidus: With central diabetes insipidus (CDI) your hypothalamus or pituitary gland do not make enough ADH. CDI also can occur when there is a problem with how the ADH is released from your hypothalamus and pituitary gland.

  • Nephrogenic diabetes insipidus: Nephrogenic diabetes insipidus (NDI) occurs when your kidneys do not respond properly to the release of ADH. With NDI your kidneys do not concentrate your urine even when you have enough ADH. If you are unable to concentrate your urine, you will lose large amounts of water from your body.

What causes central diabetes insipidus?

CDI may be caused by any of the following:

  • Autoimmune disease: Your immune system is your body's defense against disease and infection. When you have an autoimmune disease, your body begins to attack itself. You may have CDI if your immune system attacks the area in your hypothalamus that makes ADH.

  • Genetic diseases: Genes are little pieces of information that tell your body what to do or make. The genes that control the way your body makes ADH may be damaged. Your body may not make enough ADH, or it may make ADH that does not work properly. This form of CDI may occur in more than one family member.

  • Head injury or surgery: An injury to your head may cause damage to your hypothalamus or pituitary gland. Having surgery in an area of your brain also may cause damage. Bleeding and swelling in your brain, and changes in the pressure around your brain may lead to CDI. Decreased blood flow to your brain such as from a stroke, also may lead to CDI.

  • Infection and disease: Brain infections with bacteria or viruses, such as meningitis, may lead to CDI. Diseases such as brain cancer, Wegener's granulomatosis, and sarcoidosis also may cause CDI. Ask your caregiver for more information about diseases that can cause CDI.

What causes nephrogenic diabetes insipidus?

NDI may be caused by any of the following:

  • Genetic diseases: The genes that control the way your kidneys respond to ADH may be damaged. Your body may make enough ADH, but your kidneys do not respond to it.

  • Kidney problems: A kidney infection, cysts, tumors, or damage to your kidneys may change the way they respond to ADH. You also may get NDI after a blockage is removed from your ureter. Your ureter is the tube that carries urine from your kidney to your bladder.

  • Medicines: Lithium is a medicine used to treat bipolar disorder, and other mood disorders (diseases that affect your feelings). Lithium may damage your kidneys and cause them not to respond to ADH properly. Some antibiotics and antiviral medicines also may lead to NDI. Ask your caregiver for more information about these and other medicines that can cause NDI.

  • Metabolic problems: Metabolic problems may occur when you have too much, or too little of certain substances in your body. Your kidneys may not work properly when this happens. Having too much calcium or too little potassium may cause NDI.

  • Systemic diseases: Diseases such as sickle cell anemia, Sjogren's, and amyloidosis may cause NDI. Systemic disease can cause changes in how parts of your body work such as your kidneys. Ask your caregiver for more information about systemic diseases that cause DI.

What are the signs and symptoms of diabetes insipidus?

  • Urinating more than is normal for you. Your urine may look very light yellow or clear.

  • Feeling very thirsty or drinking more than you normally do. You may want mostly cold liquids, and your thirst may wake you from sleep.

  • Losing weight without trying. You may begin to lose weight daily.

  • Constipation (hard, dry bowel movements).

  • Dry skin.

  • Feeling confused, weak, and dizzy.

  • Feeling very tired.

  • Headaches and vision changes.

How is diabetes insipidus diagnosed?

Your caregiver will ask you about your symptoms and any health problems that you have. Your caregiver will do a physical exam and look for signs of brain or kidney damage. Tell your caregiver if you have any family members who have, or have had DI. Also tell your caregiver what medicines you are taking, and how long you have been taking them. You also may need the following:

  • Blood tests: You may need blood taken for tests. The blood can be taken from a blood vessel in your hand, arm, or the bend in your elbow. You may need to have blood drawn more than once.

  • 24 hour urine test: During this test you will need to collect all of your urine for 24 hours. You will urinate into a container and the urine will be put into a jug. The jug will need to be kept cold. If you urinate during the night, you will need to save that urine. Caregivers will measure and record how much you urinate. At the end of 24 hours, the urine will be sent to a lab for tests.

  • Water deprivation test: This test is done to check for a lack of ADH in your body. The test also may tell caregivers if you have CDI or NDI. You may not be allowed to drink liquids for 2 to 12 hours before the test. You also may be asked not to eat. During the test, you will need to give a urine sample and check your weight every hour. You may need have a blood sample taken every two hours. When caregivers see that you are losing weight and your urine is dilute, they will give you a shot of medicine. The medicine may be ADH or another medicine that acts like ADH. Caregivers will take another blood and urine sample about one hour after you get the medicine. Talk to your caregiver if you have any questions about the dehydration test.

  • Hypertonic saline infusion test: For this test, caregivers will give you a special liquid through an IV. An IV is a tube placed in your vein for giving medicine or liquids. You will not be able to drink any liquids during this test. During the test, caregivers will take blood samples from you about every 30 minutes. The blood is then sent to the lab to check your level of ADH. Talk to your caregiver about any questions or concerns you have about this test.

  • Magnetic resonance imaging: This test is also called an MRI. During the MRI, pictures are taken of your head. An MRI may be used to look for tumors or bleeding in your brain. The MRI also will show any damage to your hypothalamus or pituitary gland. You will need to lie still during an MRI. Never enter the MRI room with any metal objects. This can cause serious injury. Tell your caregiver if you have any metal implants in your body.

  • Renal ultrasound: This is a test using sound waves to look at your kidneys. Pictures of your kidneys show up on a TV-like screen. An ultrasound can show if you have a blockage in your kidneys that may be causing your DI.

How is diabetes insipidus treated?

The goal of treatment is to decrease your urine output, and replace lost fluids in your body. You will need to have close monitoring of how much you drink, and how much you urinate. The fluids in your body that have been lost through urination will need to be replaced. Your caregiver may tell you to only drink when you feel thirsty. Follow your caregiver's instructions about how much fluid you should drink. You also may need IV fluids depending on how much water you have lost. Other treatments will depend on the type of DI you have.

  • Treatment for CDI:

    • ADH replacement: You may be given medicines that increase the amount of ADH your body makes. The medicines help your body use the ADH to decrease your thirst and the amount you urinate.

  • Treatment for NDI: If your NDI is caused by a certain medicine, your caregiver may have you stop taking that medicine. If your NDI is caused by a disease, your caregiver will work with you to treat that disease. You may need to decrease the amount of salt you eat. Eating a low-salt diet may help decrease the amount of water you lose from your body. Ask your caregiver for more information about a low-salt diet. You also may need the following:

    • Thiazide diuretics: These medicines may help your kidneys use ADH properly. The medicine also helps you urinate less and decrease the amount of fluid you lose with urination.

    • Potassium-sparing diuretics: This medicine helps your kidneys use ADH properly. The medicine helps decrease the amount of fluid you lose with urination and keep a normal potassium level.

    • Nonsteroidal anti-inflammatory medicine: This family of medicine is also called NSAIDs. NSAIDs may help increase the water held in your kidneys and decrease your urine output. This medicine can cause stomach or kidney problems in certain people. Always read the medicine label and follow the directions on it before using this medicine. Ask your caregiver if you have any questions about NSAIDs.

    • Prostaglandin synthetase inhibitors: These medicines work to decrease how much you are urinating.

Where can I find more information?

Having diabetes insipidus may be life-changing for you and your family. You may need treatment for the rest of your life. Learning as much as you can about DI may help you cope better with treatment. Contact the following:

  • Endocrine and Metabolic Diseases Information Service
    National Institutes of Health
    6 Information Way
    Bethesda , MD 20892-3569
    Phone: 1- 888 - 828-0904
    Web Address: http://www.endocrine.niddk.nih.gov

When should I call my caregiver?

Call your caregiver if:

  • You have a dry mouth or cracked lips.

  • You are more tired than usual.

  • You have new headaches or vision changes.

  • You have questions or concerns about diabetes insipidus, your treatment, or care.

When should I seek immediate help?

Seek care immediately or call 911 if:

  • You feel very thirsty all the time, and your thirst is waking you from sleep.

  • You are urinating large amounts of light yellow, or clear urine.

  • You are losing weight daily without trying.

  • You feel weak and dizzy, or have fainted (passed out).

  • You feel confused.

  • You have a seizure (convulsion).

Care Agreement

You have the right to help plan your care. Learn about your health condition and how it may be treated. Discuss treatment options with your caregivers to decide what care you want to receive. You always have the right to refuse treatment. The above information is an educational aid only. It is not intended as medical advice for individual conditions or treatments. Talk to your doctor, nurse or pharmacist before following any medical regimen to see if it is safe and effective for you.

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