Myths about ICP: What does the scientific literature help us clarify?
Myths of Intrahepatic Cholestasis of Pregnancy ICP

Intrahepatic cholestasis of pregnancy (ICP) is a rare disorder. Many misconceptions seem to have occurred over the years and these misconceptions have seemed to spread. At ICP Care, we often get asked the same questions about these misconceptions. Some of these come from physicians and providers and others seem to come from being passed around among patients. We would like to use this blog post to help dispel some of these myths and clarify the diagnosis and management of ICP. The facts in this article are all based upon research studies that are well regarded in the scientific community and these references can be found on the ICP Care Website for further information.

Myth: ICP can only occur in the third trimester of pregnancy

Fact: ICP can occur at any point in pregnancy and there are cases as early as 5 weeks. ICP is more common in the second and third trimesters due to more elevated hormone levels. However, testing should be performed when symptoms occur. Patients should not be told that they cannot have ICP as it is “too early”.

Myth: Removal of your gallbladder (cholecystectomy) will prevent future ICP

Fact: Intrahepatic cholestasis of pregnancy is a liver condition where bile transport in the liver is disrupted by the hormones of pregnancy. Patients with ICP are more likely to have concerns with their gallbladder such as gallstones and might need to have it removed for these reasons. However, removal of the gallbladder has no consequence on the development of ICP and removal should not occur solely because a patient had ICP.

Myth: You should not eat (fast) prior to having your bile acid testing

Fact: You need to eat prior to testing. Recent studies have shown that many women who do have cholestasis would have been missed had they been fasting prior to their test. Bile acid levels are much lower fasting and do not fully represent the levels that are occurring in the pregnancy and therefore the risk. You should eat prior to testing.

Myth: If bile acids become normal with ursodeoxycholic acid treatment, early delivery does not need to occur.

Fact: No studies have been able to prove that if bile acids normalize that the risk to the baby is not still present. A recent study showed that Ursodiol treatment lowers the risk of preterm labor but no studies have been able to address stillbirth with enough numbers of patients to make a conclusion. The mechanism of stillbirth in ICP is not fully understood but we know that it increases with higher bile acid levels. We do not know if this risk goes away if bile acids lower. Therefore, timing of delivery should be based upon your highest bile acid level.

Myth: Itching must occur on the hands and feet to be cholestasis

Fact: Itching often is generalized in cholestasis. Some women do have the characteristic itching on the palms and soles but others do not. If you are having itching, even if it is not on your hands and feet, you should still be evaluated.

Myth: If bile acid levels are normal, you do not have cholestasis

Fact: Bile acid levels can take a few weeks to become elevated after itching begins. If symptoms continue, you should continue to have bile acid levels checked.

Myth: You can only be diagnosed based upon the “pregnancy” bile acid test

Fact: Any bile acid test can be used for diagnosis. There are several different bile acid tests available that are all run differently. Any of these tests can be used. The confusion occurs as some of these tests have a non-pregnancy reference range. On these tests, diagnosis should be made when the bile acid levels exceed 10 µmol/L and the reference range should be ignored. On the fractionated bile acid tests (which have a lower reference range), diagnosis should occur when the level is elevated over the upper limit of the reference range.

Myth: Bile acids spike at the end of pregnancy.

Fact: Bile acid fluctuations do not follow any set pattern and in the same patient they can even vary in different pregnancies. Some patients respond to treatment and their bile acids will remain low after treatment begins. Others will have fluctuations. This is why it is recommended to follow bile acid levels throughout pregnancy to determine the proper delivery timing.

Myth: Stillbirth risk increases significantly at 37 weeks in all cholestasis pregnancies

Fact: In prior studies showing a sharp increase in stillbirth risk at 37 weeks, patients were not divided based upon their bile acid levels. A recent large collection of cholestasis pregnancies including over 5000 pregnancies has shown that the risk of stillbirth only significantly increases at 36-37 weeks in patients with bile acid levels over 100 µmol/L. For milder cases, the risk of stillbirth does not significantly increase and remains the same as a non-cholestatic pregnancy (0.13% for bile acids under 40, 0.28% for bile acids 40-99). It is still recommended that delivery occur at the latest of 39 0/7 weeks even with mild cases as no conclusions can be drawn after this point as many of the women in the study delivered in the 38th week.

Myth: If your bile acids are less than 40 µmol/L (or 100 µmol/L) you do not need management of your cholestasis as there is minimal risk.

Fact: While recent studies have shown that the risks in cholestasis are strongly associated with higher bile acid levels, this does not mean that you should not be diagnosed or actively managed with lower levels. SMFM still classifies the diagnosis of cholestasis at levels greater than 10 µmol/L. At a level above this, you should be diagnosed and treated with ursodeoxycholic acid. Other management would include fetal monitoring during pregnancy, monitoring of bile acid levels and delivery between 36 0/7-39 0/7 weeks depending on highest bile acid levels.

Below a level of 40 µmol/L, you can be reassured that there is minimal risk to your baby. However, diagnosis and active management still needs to occur.

Myth: Cholestasis causes long term liver damage

Fact: Some patients with ICP have an underlying liver condition such as hepatitis C, autoimmune hepatitis or alpha-1 antitrypsin deficiency. For some patients, the extra hormones of pregnancy were an added stress on the liver that caused the underlying condition to be diagnosed. It is recommended to have a liver function test and possibly a bile acid test postpartum to screen for underlying liver conditions. These conditions are usually hereditary and would have occurred even without pregnancy but may be diagnosed earlier as the cholestasis can be the first sign of them.

One study did show a slightly higher risk of biliary tree cancer in patients with prior ICP. This cancer is incredibly rare. The increased risk appears to be due to other factors that put you at risk for both ICP and biliary tree cancer (for example, hepatitis C). In other words, ICP doesn’t cause biliary tree cancer. Due to the extreme rare nature of this condition, this should not be a concern.

Hopefully this article has brought some clarification to what can be a confusing diagnosis! There are probably many more myths surrounding this rare disorder that were not addressed here. The ICP Care website has a large collection of research and explanations that can hopefully help answer any further questions. Feel free to send us any myths we missed for a follow up blog post in the future!

Have you recently been diagnosed with ICP?

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Have you recently been diagnosed with ICP?

Would you like your personal experience, test results and medical treatment with this rare disease to further the advancement of science? Find out how your diagnosis can help through our Patient Registry.