For women, families and those affected by Intrahepatic Cholestasis of Pregnancy

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FAQs

Is there a file to send my doctor or midwife on ICP? I need medical referenced journals & articles!

Yes download to email to the health care provider ICP Infographic PDF file with medical links on the symptoms, diagnosis, treatment etc., with each section links to Medical studies & references. 

 

My bile acid blood tests are normal. Why am I still itchy? Should I have another blood test?

Yes, you should be retested as bile acid may take several weeks to show elevated results in your blood work. Research has shown that some women can itch for some time before bile acid levels rise above normal. In ICP, Liver Function – ALT and AST may rise before or after serum bile acids.Be sure to request the Fractionated Bile acid test that breaks the three most common bile acids. The Cholic acid (CA) level ratio research has shown as being the most sensitive indicator for the early diagnosis of the condition. The lab reference interval over 3.1 µmol/L indicates ICP. Note: Lab evidence of cholestasis includes elevated bile acids (> 10 umol/L) per Society of Maternal Fetal Medicine.

 

My Liver Hepatic Panel ALT and/or AST are elevated? My bile acids are normal.

ALT and AST may rise before or after serum bile acids. The ALT is the key indicator. Liver Functions are only elevated in some women with Intrahepatic Cholestasis of Pregnancy, and when they are elevated it can be before Bile Acids are elevated or after. Davis et al asserted that alanine aminotransferase (ALT) is the most sensitive of the conventional liver tests for diagnosis of ICP in the presence of pruritus without a rash. Palma et al also used ALT and AST values greater than 40 IU/L as partial criteria for the diagnosis of ICP.

 

My bile acid blood tests are normal with treatment of the medicine Urso– Should I still be delivered early?

Early delivery is part of the active management of ICP due to the risks. If you continue to itch and blood work is normal because of the medicine Urso to treat ICP was prescribed; the following needs to be taken into consideration. The bile acid test results take several days to receive from most labs. Both patients and doctors need to make a decision based on the risk to the baby. In addition, if you were prescribed the medication UDCA-Ursodeoxycholic acid that has brought your bile acids back down to normal or at least to under 40 micromol/L. Keep in mind the fact that based on research the link to bile acids being the cause of stillbirth, doctors take the side of caution even when the bloods levels are normal and choose to deliver the baby by week 37.

 

 

How is Intrahepatic Cholestasis of Pregnancy (ICP) treated?

The medication UDCA-Ursodeoxycholic acid is one of the most important treatments for ICP. It helps to lower the Bile acid, helps to reduce symptoms and most importantly improves bile salt export from the liver and theoretically reduces the risk to the baby. It is an FDA pregnancy category B medication that is not expected to be harmful to an unborn baby. Please review the Treatment page to review the complete list of management & treatments for ICP cases in USA by Maternal Fetal Medicine specialist.

 

Why am I still itchy after starting the medicine Urso?

Urso will diminish the itching for some, however not every woman. It can take up to two weeks to notice relief when it does help with the itch. This is because the Urso lowers bile acids, which is important to protect your baby, but the itching is caused by another chemical called lysophosphatidic acid. This is the reason itch does not necessarily correlate with the bile acid level results.

 

Why does my baby have to be delivered early?

Over the years researchers believe they have shown that delivering the baby early by week 37 reduces the risk of stillbirth. This is because it is known that stillbirth in ICP tends to occur in the last few weeks of pregnancy. The reason for this is not completely understood, although it may be linked to all the changes that take place in the woman as her body prepares for labor. Many doctors believe the benefits of delivery by 37 weeks may outweigh the risks associated with early delivery. Please refer to the Metropolitan ICP Protocol

 

What is risk to the baby with Intrahepatic Cholestasis of Pregnancy?

ICP poses several risks that are of great concern. ICP is associated with an increased risk of stillbirth (intrauterine fetal death), spontaneous premature labor, fetal distress, maternal hemorrhaging and meconium passage in utero. The risk of stillbirth in an ICP pregnancy is believed to be the same as that of a pregnancy with no complications (1%) with active management (prescribed medicine treatment-UDCA Ursodeoxycholic acid, and choosing to deliver early). In addition, most doctors chose to monitor women with ICP closely and deliver the babies early in order to minimize the risk to your baby.

 

What is risk to the Mother with Intrahepatic Cholestasis of Pregnancy?

Cholestasis patients have a reduced ability to absorb fat-soluble vitamins (A,D and K). This may lead to Vitamin K deficiency. There is a risk of maternal postpartum hemorrhage. Therefore doctors prescribe oral Vitamin K. There have been reports of maternal hemorrhage as well as stillbirth in utero and postpartum due to ICP induced Vitamin K Deficiency. In the USA all babies born in hospitals receive a vitamin K shot at birth.

 

Is it normal with ICP to have a pain in my Right Upper Quadrant (RUQ)?

Some ICP patients have pain on the right side under the right ribs and others mention the pain in the back just below the right shoulder blade. The pain has been expressed as debilitating and uncomfortable. There are some women that have the RUQ pain begin before the more common itch symptom. Be sure to speak to your doctor about the pain to have it checked with an ultrasound.

 

Is itching early at 8 week gestation too early to be Intrahepatic Cholestasis of Pregnancy (ICP)?

ICP has been diagnosed as early as 8 weeks gestation. If you are itchy which tends to be worse at night, your doctor should have a bile acid test and liver function test done to check the levels. If the results come back normal and you continue to itch, both blood tests should be repeated a few weeks later. Research has shown that some women can itch for some time before bile acid levels rise above normal. Your doctor may want to also rule out other possible causes of the itch. Note there is no research so far to suggest that developing ICP this early increases the risk of fetal distress or stillbirth. However, research has shown that you have an increased risk of early spontaneous labor.

 

My doctor said that if I had Intrahepatic Cholestasis of Pregnancy (ICP) I would be jaundiced. Is this true?

There are many symptoms associated with ICP mainly itching, however not every ICP patient has all. You do not have to be jaundice to have ICP. There seems to be a misconception that if a patient has ICP she will always present with jaundice (yellow appearance to the skin). Only a very small percentage of women get jaundiced during ICP.

 

Why don’t Histamines such as Benadryl work for the itching?

ICP itching is different than normal itching because the cause of the itching is internal, and more specifically, it is either directly or indirectly caused by bile salts in the bloodstream. "Normal" itching is caused by histamines and it can often be treated by topical lotions or anti-histamines. Itching caused by ICP does not respond to either because of its internal nature.

 

I have a rash all over and am itching everywhere! Is this ICP?

The question to ask here is - Is the rash what is causing you to itch?, or did scratching cause the rash? There is a complication during pregnancy called PUPPP that presents with a rash and is accompanied by severe itching. In this case the rash is the cause of the itching. Often, a woman with ICP will scratch herself and cause a rash-like appearance to her skin. When in doubt as to which came first, the rash or the itch, a doctor can order a serum bile acid test to be sure. In a handful of cases, ICP has indeed caused a rash, but this is not typically how it presents.

 

I am expecting triplets, is this more dangerous?

There is research yet to show that expecting more than one baby increases the risk of ICP -related fetal distress or stillbirth. Women carrying multiples appear to have a higher risk of developing ICP. Also, women with multiple pregnancies may have a higher risk of going into early spontaneous labor.

 

Is there anything else I can do?

Please note that these are tips that woman who have experienced ICP have found useful, however the medicine UDCA-Ursodeoxycholic acid helps to improve ICP, meanwhile the below are complimentary self-helps that may relieve your discomforts from the itching. Eat healthy, drink plenty of water, wear cool & loose cotton clothing, keep temperatures low and maintain a low stress level. Some women have tried complementary medicines such as milk thistle and dandelion. However, it is important that you discuss this with your doctor.

 

Will I get Intrahepatic Cholestasis of Pregnancy (ICP) again?

Reported recurrence rates vary with some researchers stating up to 70%, however it may be as high as 90%. What is known is that women who have ICP in one pregnancy are very likely to develop it again in a subsequent pregnancy. Since recurrence rates are high for ICP, specialists recommend a baseline bile acid level and LFT blood test along with repeat test if symptoms occur. Also specialist recommend close monitoring for symptoms throughout pregnancy and prescribe UDCA at the first signs of ICP even before to receiving laboratory results for BA elevated and LFT.

 

Will ICP be worse in my next pregnancy?

There has been no research to show ICP will be worse in subsequent pregnancies. In your next pregnancy you may notice sooner, ICP symptoms such as the itch. Every ICP case and pregnancy is quite different and your symptoms may vary. Some women have mentioned milder symptoms that started later in subsequent pregnancies compared to their first pregnancy. Please also keep in mind that there is a chance that you may not develop ICP at all in a subsequent pregnancy!

 

Can I breast feed my baby after Intrahepatic Cholestasis of Pregnancy?

Absolutely! Breastfeeding is completely safe and normal after ICP. Some doctors may suggest for their patients to continue their prescription of UDCA –Ursodeoxycholic Acid to help normalize bile acids in the blood after pregnancy. The medication may pass into the breast milk, but may help the baby's immature liver to rid their own body of residual bile acids as well as help with jaundice.

 

Am I more likely to get ICP if I am expecting a boy or a girl?

If you expecting a boy or a girl there is no evidence to suggest that you are more likely to develop ICP.

 

Will my baby inherit Intrahepatic Cholestasis of Pregnancy (ICP)?

If you are expecting a boy or girl there is a chance that the baby will inherit the genetic susceptibility. For a baby girl she is more likely to develop the condition if she decides to have children of her own. ICP run in families as it has been seen that Mothers and daughters (aunts & sisters) of affected women have approximately a fifteen times higher chance of developing ICP. For a baby boy although his health is unlikely to be affected he could pass this on to his children.

 

Should I have my gall bladder removed and are gallstones common with ICP?

There is no cure for ICP. Unfortunately for woman who experience ICP, a cholecystectomy will not cure cholestasis of pregnancy. For most women, there are no changes in the intensity of itching after a removal. Those that experience ICP have a greater incidence of gallstones, often creating the need for gall bladder removal, but the process itself is not a cure. Also, generally this does not have an effect on the severity of disease. Many women have had their gall bladders removed in between pregnancies and have seen no direct correlation between the gall bladder and the symptoms of ICP. Note that women with ICP have a greater chance of developing a health issue with the gall bladder at a later time in life.

 

Will the itching go away after delivery?

There is still much to be learned about the exact causes of ICP and its manifestation. ICP is sometimes a result of an underlying liver disorder. It is normal for patients to continue itching for some time after delivery, particularly with cases that have been prolonged or in cases where a patient has had several pregnancies in a short time frame, however special attention should be given to patients whose itching intensifies after delivery or does not go away at all. Postpartum Serum Bile Acid testing and Liver Function testing are suggested for ICP patients to ensure overall health. A differential diagnosis may include underlying genetic disorder or chronic liver disease such as Hepatitis C, anemia, Familial Intrahepatic Cholestasis, and bile duct obstruction and gall bladder disease. Other conditions that should be ruled out are infections with hepatitis A and B, cytomegalovirus, and Epstein-Barr virus, and autoimmune hepatitis. With regard to the latter, antimitochondrial antibodies can be obtained to rule out primary biliary cirrhosis and anti-smooth muscle antibodies to exclude autoimmune chronic active hepatitis. Appropriate imaging studies should also be done to rule out obstructive cholelithiasis.

 

Do I need to have my liver checked by a specialist after my baby is born?

Postpartum Serum Bile Acid testing and Liver Function testing are suggested for ICP patients to ensure overall health at 3-6 months postpartum. Sometimes there may be an underlying liver condition which is not ICP that has caused the itching and abnormal liver levels during your pregnancy. If the results still show elevated ALT/AST or bile acid levels you will need to have the tests repeated. If, after 6 months your levels are still not improving you should make an appointment or referred to a specialist called a Hepatologist experienced and qualified type of doctor to treat people with liver disease. A Gastroenterologist has completed specialty training in the treatment of disorders of the liver and other digestive disorders. You may have another liver condition or your liver is just taking time to settle back to normal. This has occurred with women that experience ICP.

 

What contraception can I use after my Intrahepatic Cholestasis of Pregnancy?

The only methods of contraception that may cause problems for women who have experienced ICP are those containing hormones. However, there have been no large studies regarding the use of contraception following an ICP pregnancy. Your doctor may advise you on the following forms of contraception. The mini pill or oral contraceptive pill, Intra-uterine devices, hormonal form of contraception that bypasses the liver, such as the Mirena. The copper IUD hormone free IUD called Paragard many women with ICP have said their doctors recommend this over the others. Also women with ICP have said Paragard has worked for them. If you do decide to take the pill after a consultation with your doctor, it is important to make sure that your liver function is normal before you begin. A Liver Function Test should be checked again approximately six weeks after you begin. If you begin to itch after you start to take the pill you must stop. However, keep in mind the itching shouldn't be confused with cyclical itching which occurs during the menstrual cycle.

 

Why do I get occasional itching around my menstrual cycle?

Many that have experienced ICP have noticed itching called cyclical which occurs during ovulation or the start of menstruation. The itching is noticeable, however not similar to the ICP pregnancy itch that disturbs sleep. It is not known why this happens after having ICP, however it is may be that the liver is left sensitive to hormone fluctuations that occur during the menstrual cycle.