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DIABETES INSIPIDUS

(FAMILIAL CENTRAL DIABETES INSIPIDUS)
Diabetes Insipidus

WHAT YOU NEED TO KNOW:

What is diabetes insipidus? Diabetes insipidus (DI) is a disease that causes frequent urination. The amount of urine you make is controlled by antidiuretic hormone (ADH). ADH is made in a part of the brain called the hypothalamus. ADH is stored and released by the pituitary gland. The 2 most common types of diabetes insipidus are central and nephrogenic.

What causes central DI? Central DI (CDI) occurs when your body does not make or release enough ADH. CDI can be caused by any of the following:

  • Head injury or brain surgery

  • Infections such as meningitis or encephalitis

  • Medical conditions such as brain cancer or sarcoidosis

  • Family history of CDI

What causes nephrogenic DI? Nephrogenic DI (NDI) occurs when your kidneys do not respond properly to the release of ADH. NDI can be caused by any of the following:

  • Family history of NDI

  • Damage to the kidneys caused by conditions such as kidney disease or blocked ureters (tubes that carry urine from the kidney to the bladder)

  • Medicines such as loop diuretics, lithium, and certain antibiotics

What other signs and symptoms may I have with DI?

  • Feeling very thirsty and drinking more liquid than usual

  • Losing weight without trying

  • Dry skin

  • Feeling confused, weak, and dizzy

  • Fatigue

  • Headaches and vision changes

  • Children may have irritability, a loss of appetite, and slow growth

How is diabetes insipidus diagnosed? Your healthcare provider will ask about your symptoms and any health problems you have. Tell your healthcare provider if you have any family members who have DI. Also tell him what medicines you take, and how long you have been taking them. You may also need any of the following:

  • A 24 hour urine test may be done. You will need to collect your urine for 24 hours. You will urinate into a container. Healthcare providers will measure and record how much you urinate. The urine will then be sent to a lab for tests.

  • A water deprivation test is done to decide if you have DI and to find the cause. The test may also tell healthcare providers if you have CDI or NDI. You will be asked not to drink any liquids. Then you will need to give a urine sample so that it can be tested. Your weight will also be checked every hour. You may need blood tests to measure your ADH levels every 2 hours. You may be given a shot of ADH or another medicine that acts like ADH. Healthcare providers will take another blood and urine sample about 1 hour after you get the medicine.

  • A hypertonic saline infusion test may be done. Healthcare providers will give you liquid through an IV. You will not be able to drink any liquids during this test. During the test, healthcare providers will take blood samples about every 30 minutes. The blood is then sent to the lab to check your level of ADH.

  • An MRI takes pictures of your head to find the cause of DI. You may be given dye to help the pictures show up better. Tell the healthcare provider if you have ever had an allergic reaction to contrast dye. Do not enter the MRI room with anything metal. Metal can cause serious injury. Tell the healthcare provider if you have any metal in or on your body.

How is diabetes insipidus treated? Treatment depends on the type of DI you have and the cause. If you have CDI, you may receive medicine that is similar to ADH to help decrease urination. If have NDI that is caused by a certain medicine, your healthcare provider may have you stop taking that medicine. If your NDI is caused by a disease, your healthcare provider will work with you to treat that disease. You may also need medicine that helps your kidneys control the amount you urinate.

How do I manage my symptoms?

  • Weigh yourself each day. Weigh yourself at the same time each day, on the same scale. Rapid weight loss can be a sign of fluid loss in your body.

  • Drink liquids as directed. Follow your healthcare provider's instructions about how much liquid you should drink and what kinds of liquids to drink.

  • Limit sodium as directed. You may need to decrease the amount of sodium (salt) you eat if you have NDI. This helps decrease the amount of fluids you lose.

When should I contact my healthcare provider?

  • 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 your condition or care.

When should I seek immediate care or call 911?

  • 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 you have fainted.

  • You feel confused.

  • You have a seizure.

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.