Intrahepatic Cholestasis of Pregnancy (ICP)?
Intrahepatic Cholestasis of Pregnancy (ICP), (formerly known as Obstetric Cholestasis or OC), is a liver disorder that occurs in around one in 140 pregnancies in the UK, where the normal flow of bile out of the liver is reduced. Chemicals in the bile called bile salts (also often referred to as bile acids) can then build up and ‘leak’ into the bloodstream. This causes affected women to have increased levels of bile salts in their blood.
The condition is also characterised by itching, known as pruritus, which generally appears in the last three months of pregnancy (though can appear sooner). It is of variable severity and can be extremely distressing for the mother. Both the raised bile salts and pruritus completely disappear soon after the birth and generally do not appear to cause long-term health problems for mothers.
There can be an increased risk of preterm delivery (both spontaneous and induced) and fetal distress. Some case studies have also reported stillbirth occurring near the end of pregnancy in women with he conditon and therefore it is essential that the condition is recognised and treated in time.
At present, most obstetricians in the UK managing ICP pregnancies deliver babies early, at around 37 or 38 weeks. This is done because it is thought that it may help prevent the possibility of stillbirth. There have been no reports of any harmful effects to babies from ICP pregnancies once they have been delivered.
What are the causes of ICP?
We do not yet know what causes the restriction of the flow of bile from the liver in ICP. Evidence suggests that it is caused by a combination of hormonal, genetic and environmental factors such as:
- ICP is more common in twin and triplet pregnancies, which are associated with higher levels of hormones.
- ICP has been triggered in women taking high-dose oral contraceptives (which contain forms of oestrogen and progesterone) and also in women being treated with progesterone.
- Genetic factors could explain cases where ICP occurs within families and also why it is more common in some ethnic groups. Although ICP affects one in 140 (0.7%) pregnancies in the UK overall, it is more common in women of Indian or Pakistani origin, affecting around one in 70 to 80 (1.2 – 1.5%) pregnancies. In other countries, such as South America and Scandinavia, the number of women affected is higher still.
- ICP does not always recur in following pregnancies.
- Women with hepatitis C more commonly develop ICP than those who do not have the virus.
What role do bile salts play in ICP?
Although raised bile salts have previously been thought to be the cause of the itch associated with ICP, research has so far not confirmed this link. A recent study suggests that the itch may be caused by another chemical in the blood (lysophosphatidic acid) which is raised in women with ICP compared to pregnant women without complications
What is known is that the bile salts can cross the placenta and may be linked to the reason why some babies suffer complications or are stillborn. There is evidence from human and animal studies that bile salts cause structural damage to the placenta. Further research is required to better understand this.
There have been no reports of any harmful effects to babies from ICP pregnancies once they have been delivered.
What are the symptoms of ICP?
Itching is often the only symptom of ICP. The itching typically begins on the arms, legs, hands and soles of the feet. It may also occur on other parts of the body such as the face, back and breasts. It is usually worse at night, leading to sleeplessness and exhaustion.
Some women scratch themselves so frantically that they make themselves bleed. A few lose their appetite and feel generally unwell. A number of women (thought to be around one in ten) will develop jaundice in pregnancy. However, most women with ICP do not have jaundice.
Itching is not uncommon in normal pregnancy. However, some women may not be aware that they have ICP because they are told that itching is normal in pregnancy. This can be misleading.
It is important that if you are pregnant and itching, you should check with your doctor or midwife. A simple blood test (see below) is required to diagnose ICP . It may be helpful to take a copy of this leaflet with you.
Your doctor should ask about your medical and family history to aid diagnosis. If close female family members have been affected by ICP then you may be at increased risk.
It is also important to exclude all other possible causes of your itching, such as allergies or eczema (but it is possible to have a skin condition and ICP). Other signs such as pale stools or dark urine may indicate a problem with your liver, including ICP.
Your doctor can diagnose ICP from blood tests called liver function tests (LFTs) and a serum bile salt test. Liver function tests are performed to gain an idea of how your liver is functioning. A number of separate properties of your blood will be examined. Your doctor should use pregnancy-specific reference ranges to interpret your blood test results.
In OC/ICP, doctors will be looking for abnormal levels of the liver enzymes alanine aminotransferase (ALT) and aspartate aminotransferase (AST). Sometimes levels of another enzyme, gamma-glutamyl transferase (GGT), will also be raised. The most specific test involves measuring serum bile salts. In most UK hospitals raised levels would be a measurement of greater than 14µmol/L. However some hospitals may ask you to fast before the test. In this case a fasting level of greater than 10µmol/L would support the diagnosis of OC/ICP.
In most women with ICP, both ALT and bile salt levels will be raised, but just one may be raised at the first test. If the tests are within normal limits and you carry on itching, it is important that the tests are repeated. Unfortunately the serum bile salt test is not available in all hospitals. Your doctor may need to send a sample to another hospital for diagnosis
Women with hepatitis C are at increased risk of developing ICP during pregnancy. A small number of women with ICP may therefore have undiagnosed hepatitis C. If your test results do show that you have viral hepatitis, or another liver condition, you will then be able to be referred to a specialist in liver disease (hepatologist) and receive treatment.
ICP is only completely confirmed when symptoms disappear and liver tests go back to normal after delivery.
There is no cure for ICP. Doctors will monitor your condition, treat symptoms and may advise delivering your baby early.
Topical creams such as calamine lotion and aqueous cream with menthol, are safe and may provide some temporary relief from itching for some women.
A number of medications may be used in your treatment. As yet, a specific medication to manage ICP is not available, although clinical studies are in progress. Medication is currently aimed at reducing the build-up of bile salts in your blood, to relieve the itching and to protect your baby.
The role of vitamin K
Vitamin K is a fat-soluble vitamin, absorbed in your diet, that is essential for blood coagulation (clotting).
Absorption of fats can be reduced in ICP and this could affect the uptake of vitamin K. A lack of vitamin K can affect your bloods clotting mechanism and could result in increased blood loss during delivery. Many doctors will check how your blood is clotting and if necessary prescribe a daily supplement of vitamin K, in the form of an oral water-soluble tablet, to try and reduce the risk of a severe bleed after delivery. However, there is no research at present to confirm that taking oral vitamin K will do this, but neither is it thought to harm your baby.
Deciding whether to deliver early
If you have ICP, the practice in most obstetric units is to monitor you closely (checking your liver enzymes and bile salt levels) and for your baby to be delivered between 37-38 weeks of pregnancy. At the moment it is not known for certain whether early delivery is the best way to manage your pregnancy.
It is not possible to predict stillbirth based on your liver enzyme and bile salt levels. Research has shown that mothers with fasting bile salt levels greater than 40µmol/L are at most risk of going into premature labour and their babies showing symptoms of distress. However, complications for the baby have occurred in mothers whose bile salts are below 40µmol/L.
Bile salt levels usually rise as the pregnancy continues. The weekly monitoring of your blood tests will help your doctor to see if levels are rising and make decisions about any increased risks. Your obstetrician should discuss fully the possible risks and benefits of early delivery with you.
Other monitoring may include having regular tests to monitor your baby’s heartbeat (cardiotocography or CTG) and scans (to look at oxygen flow and the growth of your baby). Neither of these procedures have been shown to be able to predict a baby that may be at risk from ICP, however, many women find it reassuring to have them.
With ‘active’ management (such as monitoring, symptom treatment and early delivery) the risk of stillbirth for women with ICP is thought to be the same as that for normal pregnancy (around 1%). It is not currently known which aspects of ‘active’ management are of most benefit.
You and your baby should receive the standard health checks after birth. After the delivery the itching should disappear relatively quickly. There are no known developmental problems for the baby. The risk of developing neonatal jaundice is the same as for other babies. It is thought that there is no major damage caused to the liver of either mother or baby.
Women with a previous history of ICP are more likely to have gallstones and some other forms of liver impairment in later life. Specifically a small proportion of women who have had ICP may develop autoimmune forms of liver disease, such as Autoimmune Hepatitis or Primary Biliary Cirrhosis (see our liver health section for more information on these conditions).
Some women who have had ICP also develop cholestasis outside of pregnancy when taking some medications such as antibiotics or the contraceptive pill.
You should have a blood test before you are discharged from hospital to check your LFTs and bile salts are reducing, however, LFTs can be raised for the first 10 days after birth in normal pregnancy.
You should have a follow-up post natal check related to your ICP at around six to twelve weeks to confirm that symptoms have resolved and the diagnosis was correct. At your appointment your doctor will be keen to establish that the itching has gone away and carry out an LFT and serum bile salt test to see if these have returned to normal. Levels should improve over time but it may take up to 12 weeks for LFTs to go back to normal.
If there are any abnormal results you will need to have further tests. These are to determine whether your liver is taking extra time to settle down or, more rarely, whether you have an underlying liver problem.
If the latter is the case, you may be referred to a hepatologist (liver specialist), or perhaps a gastroenterologist (specialist in disorders of the digestive tract) with knowledge of liver problems.
In general, if you continue to itch after six months, a referral to a liver specialist should be sought.
Looking after yourself
There are no special foods to eat or to avoid. As with all pregnant women, it is important that you eat a well-balanced diet which includes lots of vegetables, fruit and whole wheat cereals, including bread. As the flow of bile into the gut is reduced, you may find you cannot tolerate the same amount of fat as normal. You may therefore find that it helps to lower your fat intake.
To help with itching you may find the following suggestions from other mothers helpful.
- Have frequent tepid baths.
- Try not to get too hot.
- Use lotions such as calamine and aqueous cream with menthol
- Wear loose cotton clothing.
ICP is not caused or made worse by alcohol. However, the Department of Health recommends that if you are pregnant or are planning a pregnancy, you should avoid drinking alcohol to minimise harm to your baby. When you drink, the alcohol passes across the placenta to the baby. A baby cannot process alcohol in the same way that you can and this can seriously affect the baby’s development.
ICP is not thought to cause any lasting liver damage in the majority of cases. However, it may leave your liver more sensitive to normal changes in the level of your hormones, and a few women report what is known as ‘cyclical itching’ during the menstrual cycle. This can happen just before ovulation or just prior to a period but the itching is usually only mild and stops either when ovulation has taken place or your period has started.
ICP should not influence your ability to breastfeed.
It is highly possible that you may have ICP in future pregnancies. If ICP does recur, it may not necessarily follow the same pattern and so it is important that any future pregnancies are carefully managed by a consultant obstetrician who is familiar with the condition. This may involve checking your bile salt levels and LFTs early in pregnancy and then at 28 weeks. If itching occurs, blood tests should be checked sooner.
Until it is proven that the hormones oestrogen and progesterone do not have an effect on the liver in ICP, it would seem sensible to approach hormonal contraception (the ‘pill’) with caution or avoid it completely.
Because they have the potential to cause cholestasis, it may be advisable to avoid the antibiotics erythromycin and augmentin following an ICP pregnancy. Other antibiotic treatments are likely to prove just as effective and should be used if possible. Your doctor should be able to determine which antibiotics the organism causing your infection is sensitive to and prescribe accordingly.
Support and information
It goes without saying that the anxiety of an ICP pregnancy can be extreme. It is important that concerns are acknowledged by both healthcare professionals and friends and family.
You may find it helpful to get in touch with others who have experience of ICP via online support groups, so that you can discuss your fears and worries in a safe and confidential environment. You may also access counselling services through your GP or via the British Association for Counselling & Psychotherapy (BACP),
Organisations which may be able to help:
British Association for Counselling & Psychotherapy (BACP)
15 St John's Business Park
Tel: 01455 883300
BACP can provide advice on a range of services to help meet the needs of anyone seeking information about counselling and psychotherapy.
Helpline available at various times. See their website for time and contact numbers
A support resource for people in the UK affected by OC and those wanting to find out more about the disorder. ICP Support provides general information and the latest research on ICP, with testimonies from people with ICP, a discussion forum and helpline.
Sands (Stillbirth and Neonatal Death Society)
28 Portland Place
London W1B 1LY
National Helpline: 020 7436 5881
Monday to Friday 9.30am to 5.30pm and Tuesday & Thursday 6pm to 10pm
A charity established by bereaved parents to support anyone affected by the death of a baby.
The Miscarriage Association
c/o Clayton Hospital
West Yorks WF1 3JS
Helpline: 01924 200 799
Monday to Friday 9am to 4pm
A charity providing information and support for anyone affected by the loss of a baby during pregnancy.
Tommy’s, the baby charity
3 Laurence Pountney Hill
London EC4R 0BB
Tel: 0207 398 3400
A charity funding research into and providing information on the causes and prevention of miscarriage, premature birth and miscarriage.
Reviewed by: Professor Catherine Williamson, Professor in Obstetric Medicine, Imperial College, London; Jenny Chambers, ICP Support