DON'T IGNORE THE ITCH!
Intrahepatic Cholestasis of Pregnancy (ICP) is a liver disorder that only occurs during pregnancy and is usually accompanied by moderate to intense itching on the hands and feet. ICP is associated with increased risks of preterm birth, meconium, respiratory issues, and stillbirth.
Itching is the most common (and frequently only) symptom of ICP, with the itching typically concentrated on hands and wrists or feet and ankles. That said, it can also affect other areas such as the scalp, arms, and legs, or just generally all over. Many people experience worsening itching at night.
A bile acid test, sometimes called serum bile acids, total bile acids, or bile salts, can be used to help diagnose ICP. (Though it's important to note that a negative result does not rule out ICP.)
Intrahepatic Cholestasis of Pregnancy (ICP) is a genetic disorder. People who develop ICP have a genetic predisposition, but not everyone with the predisposition will develop ICP. We know that inheriting a single copy of a gene for Intrahepatic Cholestasis of Pregnancy is enough to put us at risk for developing ICP. This can be confusing for many people, because there may be no family history of ICP, but it is still due to a genetic predisposition. ICP can be inherited from either parent, and not everyone who inherits a gene will develop ICP during their pregnancies, meaning both male and female relatives may carry the gene but display no symptoms. However, due to the genetic nature of ICP, relatives of ICP patients are at higher risk for developing ICP in their own pregnancies. In some cases, patients may develop elevated bile acids during pregnancy due to an underlying liver disease or disorder. While this isn’t “true” ICP, it should still be treated the same.
One of our partner organizations, icpcare.org, has a great chart to help you understand the genetics of ICP!
While the gene for Intrahepatic Cholestasis of Pregnancy is always present in affected individuals, it doesn’t become apparent until the addition of increased hormones, specifically estrogen and progesterone. Both hormones have been found to have a role in the development of ICP. As pregnancy progresses, estrogen and progesterone levels increase, and the hormones interfere with the liver’s ability to move bile out of the cells normally. Since hormone levels are higher later in pregnancy, ICP most commonly develops in the third trimester, but can happen at anytime.
Recognizing Symptoms of ICP
For most people with Intrahepatic Cholestasis of Pregnancy, itching is the only symptom. ICP is not typically associated with a rash, but sometimes a rash can develop as a result of intense scratching.
Classically, Intrahepatic Cholestasis of Pregnancy itching has been described as occurring on the palms of the hands and soles of the feet. While this is common, it is not true for all affected individuals. Sometimes the itching is concentrated elsewhere on the hands and feet, on wrists, ankles, arms, legs, or scalp.
Some itching in pregnancy can be normal, and not all itching is a sign of Intrahepatic Cholestasis of Pregnancy. However, it is important to keep in mind that a normal bile acid test does not rule out eventual diagnosis. You should continue regular testing as long as you are experiencing symptoms of ICP. The location and intensity of the itch can vary and does not correlate with severity of the disease.
Some affected individuals may experience other, less common, symptoms like:
- Right upper quadrant pain - A minority of patients experience pain in the area of the liver, under the right ribs,
- Dark urine - Biochemical changes in your body may cause urine to darken. Often this is exaggerated in the morning, and it is not remedied by adequate water intake,
- Pale stool/greasy stool - during normal digestion, bile gives our stool its color. Intrahepatic Cholestasis of Pregnancy can, in some cases, interfere with the flow of bile to such an extent that bile does not reach the intestines to give the stool its typical appearance, causing it to be pale gray clay colored. It is also possible to have greasy stool (steatorrhea), due to poor fat digestion, because bile plays an important role in this process. These symptoms may also indicate gallstones, which are a common find in ICP pregnancies,
- Malaise - refers to a general feeling of poor health. Some patients with ICP report various degrees of malaise. While it is normal to feel fatigue during pregnancy, these symptoms are more pronounced in some people with Intrahepatic Cholestasis of Pregnancy. Digestive symptoms such as vomiting and diarrhea can also occur,
- Jaundice - yellowing of the skin and eyes, is very uncommon, occurring in 10% or less of patients. The yellowing seen in jaundice is dramatic, and unmistakable when it occurs. When it does, the associated elevated bilirubin is usually mild,
- and/or mild Depression - Mild depression may develop as a result of biochemical changes in the body, hormonal changes, lack of sleep, and/or the inability to escape the itch. Please discuss any depressive thoughts or feelings with your doctor immediately.
Many prior studies have shown that the risk of stillbirth is increased in a pregnancy that is complicated by Intrahepatic Cholestasis of Pregnancy. Most of these stillbirths occur after 37 weeks of pregnancy. A recent study looked at over 5000 cholestasis pregnancies and showed that the risk of stillbirth increases as bile acid levels increase. These findings were reassuring for patients with low bile acid levels as the risks of stillbirth were the same in cholestasis pregnancies as normal pregnancies if bile acid levels remained below 100.
But don't worry! Being aware can help protect you and your baby. Serum bile acid testing is the most accurate way to diagnose intrahepatic cholestasis of pregnancy. This testing can be performed at any point in the day and, based on recent recommendations, does not require fasting.
The treatment of Intrahepatic Cholestasis of Pregnancy involves 3 main parts:
monitoring, medication treatment, and early delivery.
Monitoring involves following bile acid levels and fetal monitoring including non-stress testing (NSTs)
Medication treatment involves a first-line, albeit off-label, treatment with a medication called ursodeoxycholic acid (Ursodiol or Actigall)
Early delivery is recommended most often around 36 0/7-39 0/7 weeks with earlier deliveries considered on a case-by-case basis depending on bile acid levels
The most important thing to know: DON'T IGNORE THE ITCH AND #ALWAYSASK YOUR PROVIDER IF YOU HAVE ANY CONCERNS!
REMEMBER: No one knows your baby or your body better than YOU! Trust your instincts, and when in doubt, get checked out.
READY TO LEARN MORE? There's plenty more #empoweredpregnancy goodness where that came from! Head back to the Empowered Pregnancy Overview to for even more empowerment. #UnitedWePush