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About ICP

Intrahepatic cholestasis of pregnancy (ICP), also known as obstetric cholestasis (OC), is the most common liver condition specific to pregnancy. It is a complex condition, with multifactorial reasons behind its cause and effects, meaning that a standardised care pathway for women in an ICP pregnancy is hard to design and implement. This makes it challenging for health professionals to know what the best practice is for treating and managing the condition. As a result we know (because women tell us), that this lack of knowledge is causing anxiety and confusion for families affected by ICP.

ICP Support is different from other organisations providing information on the condition because two of the trustees who run the charity also work in research into the condition (see the pictures of Jenny and Pete below). This means that what you read here is the most up-to-date research and thinking on what should happen in an ICP pregnancy. This should enable you, working together with your healthcare professionals, to ensure that you and your baby receive what’s considered to be the best care.

In these pages you will find detailed information about the condition, together with how it is diagnosed, treated and managed.

In the lab
Jenny Chambers works for Professor Catherine Williamson as her Clinical Trials Coordinator. Jenny helps with the design and implementation of research studies into ICP, as well as recruiting women to take part in research and collecting samples (such as blood, urine and placenta) to be used in research.

Genetic research
Dr Peter Dixon is Senior Scientist to Professor Catherine Williamson. Peter is the team's genetics expert as well as investigating other aspects of the condition.

If you find the information here helpful, why not make a donation so that as a charity we can continue to help fund research?

What is ICP?

Intrahepatic cholestasis of pregnancy (ICP) – also known as obstetric cholestasis (OC) – was first mentioned in 1883 by Ahlfeld, who wrote about a pregnant woman with jaundice that resolved after birth. In the 1950s two Scandinavian researchers, Svanberg and Thorling, reported that whilst jaundice might be present in a small number of women, what they all had in common was pruritus (which typically presented in the third trimester of pregnancy) and raised liver enzymes. The addition of raised bile acids as a feature came later as further research was conducted.

It is the most common liver condition specific to pregnancy. In the UK it affects just under 1% of pregnant women, but it is more common elsewhere, affecting up to 5% of pregnant women in some parts of the world, such as South America. In some specific populations, incidences of up to 22% have been reported.

Cholestasis simply means sluggish or interrupted bile flow. Intrahepatic means that the problems begin within the liver. Pregnancy is added to define it as a pregnancy-specific condition, as it is possible to have intrahepatic cholestasis outside pregnancy in both males and females. You may know ICP more commonly as obstetric cholestasis, but scientists will, by and large, always refer to it as ICP. Women in the USA also refer to it as ICP so having just one name for it makes sense!

Cholestasis leads to a build-up of bile acids and other substances in the liver, which then ‘leak’ into the woman’s bloodstream. This means that a raised level of bile acids in the blood is always necessary to confirm the diagnosis of ICP.

References

Victoria Geenes and Catherine Williamson (2009) Intrahepatic cholestasis of pregnancy. World Journal of Gastroenterology, 15(17): 2049–2066 | HTML | PDF

Reyes H, Gonzalez MC, Ribalta J, Aburto H, Matus C, Schramm G, Katz R, Medina E. Prevalence of intrahepatic cholestasis of pregnancy in Chile. Ann Intern Med 1978; 88: 487–493

What are the symptoms?
Itching (also called pruritus):
  • Typically presents in the third trimester, but it can start as early as 8 weeks of pregnancy.
  • It can be mild or so severe that you scratch your skin until it bleeds. It can be constant or intermittent.
  • Mild scratch marks

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    Result of severe scratching

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    What women use to scratch

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  • Although the itch typically affects the hands and feet, it may occur anywhere on your body.

    Itch locations
    Where women itch – results of a survey carried out by ICP Support in 2015

  • Many women find that the itching is worse at night and disturbs their sleep.
  • There is research to show that the level of bile acids does not correlate with the intensity of itch. This means that it is possible to experience severe itching but still have low bile acid levels, and conversely have very high bile acid levels with very little itching. Two other substances, lysophosphatidic acid and sulfated progesterone metabolites, have been shown to have a more direct link to the itch.
  • There is no rash associated with the itch, but there may be marks on your skin from scratching (also called excoriation).
  • Although the symptoms of ICP are distressing for you, they should resolve rapidly after your baby is born. They are not thought to have any long-term effects on your health, but research into this is ongoing. Recently there has been some suggestion that women who have had ICP may have a slightly higher chance of developing Type 2 diabetes. Their children may also have a higher risk. More research is needed to fully understand this latest thinking.
Other symptoms:
  • Some (but not all) women with ICP develop other symptoms associated with cholestasis. These may include jaundice (yellowing of the skin and whites of the eyes), dark urine and pale stools.
  • It is not uncommon for women with ICP to feel generally unwell and tired, and to lose their appetite.
  • Right Upper Quadrant (RUQ) pain. You might notice that you develop a tenderness or experience pain on your right-hand side, just underneath your rib cage. Women have reported this pain during their ICP pregnancy, but the liver doesn’t actually have any nerve endings so it’s not this that is causing the pain. One thought is that the liver may be pressing against the membrane (called the capsule) that surrounds it, and as the capsule does have nerve endings this is what the pain could be. But it may also be due to other factors, such as gallstones or even how the baby is positioned inside you. You will need a doctor to examine you to see what could be the cause. Not much has been written about why this kind of pain sometimes occurs in ICP, but as more and more women are reporting it on our forums, we know that it can be a problem. It would certainly seem to need further research so that specialists can learn more about it, especially as we also know that it sometimes continues to be a problem for a small number of women after the baby has been born.

References

Abu-Hayyeh et al. Prognostic and mechanistic potential of progesterone sulfates in intrahepatic cholestasis of pregnancy and pruritus gravidarum. Hepatology 2015; doi: 10.1002/hep.28265 | PDF

Dixon PH, Williamson C. The pathophysiology of intrahepatic cholestasis of pregnancy. Clin Res Hepatol Gastroenterol 2016; 40(2): 141–53. doi: 10.1016/j.clinre.2015.12.008

Kremer AE et al. Lysophosphatidic acid is a potential mediator of cholestatic pruritus. Gastroenterology, 2010; 139: 1008–1018 | PDF

Papacleovoulou G et al. Maternal cholestasis during pregnancy programs metabolic disease in offspring. J Clin Invest 2013; 123: 3172–81.

Williamson C, Geenes V Intrahepatic cholestasis of pregnancy. Obstet Gynecol 2014; 124: 120–133. DOI: 10.1097/AOG.0000000000000346.

What causes ICP?

ICP is a complex condition affected by your:

  • hormones
  • genetics
  • environment

These all interact with each other in ways that we don’t fully understand. The information that we present is based on the most up-to-date scientific evidence that we have, but it may (amd probably will) change as more research is carried out and we learn more about the condition.

Tap on any of the three buttons in the diagram to find out more.

How is ICP diagnosed?

There is no routine screening for ICP. It is not hard to understand why. One of the challenges is that the condition can present as early as 8 weeks and as late as 40 weeks. This means that women would need repeated screening throughout pregnancy. Also, as it is a relatively uncommon condition of pregnancy (affecting around 5,500 women a year in the UK), the cost implications of testing the whole pregnant population are obvious.

Instead, it is more likely that you will need to mention the itch, either at your antenatal appointment or by phoning the maternity day assessment unit/maternity helpline, and then tests will be performed.

  • To make the diagnosis of ICP, other liver conditions and causes of itching need to be ruled out first. These other conditions may include viral hepatitis, autoimmune hepatitis, and primary biliary cholangitis. It is a good idea to have a liver ultrasound scan in the pregnancy to to confirm that nothing else might be causing your symptoms and abnormal blood test results, but the presence of gallstones does not exclude a diagnosis of ICP – it is possible to have both ICP and gallstones. Research shows that women with ICP have a higher chance of either already having had gallstones or of developing them in later life.
  • Your doctor will need to ask you about your symptoms and may ask whether anyone else in your family has had liver problems during pregnancy.
  • Research and anecdotal (personal reporting) evidence has shown that some women may itch for several weeks before their blood tests show any abnormalities. It is therefore important that you continue to have these tests if you continue to itch.
Blood tests required:
  • Bile acid test – bile acids are chemicals produced in the liver to help with digestion. In ICP the flow of bile acids in the liver is reduced and they build up in the blood. A bile acid test is believed to be the most specific test for ICP and most experts in ICP will not confirm a diagnosis of ICP unless this is raised.

    Bile acids have their own circadian rhythm, which means that they naturally rise and fall (within normal reference ranges) over a 24-hour period. The time of day at which you have your blood taken to measure your bile acids can make a small difference to your result, and any increase (within normal reference ranges) doesn’t mean that your bile acids are going to become abnormal or are rising – it could simply be that you have had them tested at a time of day when they are generally a little higher. They also rise after eating, but there is no evidence to suggest that you need to fast for the test – in fact it’s possible that it’s better to know what they are after eating so that you can know how high they can become.

    Researchers don’t know for sure when the best time is to have bile acids measured if you are being tested for ICP or you have already been diagnosed with the condition, but we suggest that you leave around 90 minutes after eating before being tested as levels will have peaked by then. Given what we have written it may also make sense to be consistent about the time of day you have your test and what you have eaten beforehand. There has been no research about this either, but by doing this you will know that your results have not been affected by testing at different times or by eating different food.

    Not all hospitals perform the test and some hospitals have to send the blood sample elsewhere for testing. Ideally, you should be able to have the results within 48 hours, but we know that this is not possible for all women at the moment. It’s worth asking your health professional to chase your results if you know that they sometimes take longer to come back.

    Bile acids are thought to be harmful because they may be responsible for some of the complications that are known to be associated with ICP.

  • Liver function test (LFT) – this blood test looks at how well the liver is working by measuring the levels of different enzymes. One or more of the following enzymes may be measured in a liver function test – AST (aspartate transaminase), ALT (alanine transaminase), alkaline phosphatase or GGT (gamma-glutamyl transpeptidase). The AST and ALT levels are the ones that are used to support the diagnosis of ICP. Research has shown that transaminases sometimes rise before the bile acids. As noted above, experts will not diagnose ICP until the bile acids rise.

  • Reference ranges for blood tests. The table below gives the normal values to be expected in both non-pregnant women and pregnant women without ICP.

    The values may vary between laboratories – for example, some laboratories cite bile acids as low as <8.3 µmol/L as being abnormal, while others define abnormal as >14 µmol/L. This may be because of the different methods used to test the bile acids (liquid chromatography–mass spectrometry compared to enzymatic testing) or it may be that reference ranges could differ depending on the population involved – the lower range we have quoted seems to be pertinent to the Latina population.

    As always with ICP, more research is needed; as a charity, we believe that it’s important to have standardised reference ranges for bile acids, as the current situation is causing a lot of confusion and anxiety amongst women who are being tested for the condition.

    (Tap image to enlarge)
    (Click image to enlarge)

    Blood test reference ranges
    Source: Walker I, Chappell LC, Williamson C. Abnormal liver function tests in pregnancy. BMJ 2013;347:f6055.

References

EASL Clinical practice Guidelines: Management of cholestatic liver diseases. Journal of Hepatology 2009; 51: 237–267

Lee RH, Goodwin TM, Greenspoon J, Incerpi M. The prevalence of intrahepatic cholestasis of pregnancy in a primarily Latina Los Angeles population. J Perinatol 2006; 26: 527–532

Marschall HU. Management of intrahepatic cholestasis of pregnancy. Expert Rev Gastroenterol Hepatol 2015; 9(10): 1273–1279

Royal College of Gynaecologists. Obstetric Cholestasis (Green-top Guideline No. 43). https://www.rcog.org.uk/en/guidelines-research-services/guidelines/gtg43/ (currently awaiting revision).

Walker I, Chappell LC, Williamson C. Abnormal liver function tests in pregnancy. BMJ 2013;347:f6055.

How is ICP treated?

There is no consensus on the best way to treat ICP. Many hospitals have adopted a policy of ‘active management’ with ICP pregnancies in anticipation that this approach might reduce any risk to the unborn baby. The term ‘active management’ is used to describe various strategies that hospitals use to monitor your ICP pregnancy, and may include some or all of the following:

  • Blood tests (bile acids and liver function)
  • Fetal movement monitoring (cardiotocograph and growth scans)
  • Treatment with ursodeoxycholic acid (UDCA)
  • Treatment with other drugs
  • Planned delivery at around 37 weeks (see the section on management of ICP)

It should be noted that none of these interventions is proven to protect your baby against the risk of complications associated with ICP.

Tap on the buttons below for more information about treating ICP.

Management of an ICP pregnancy

There is as yet no standard management programme for ICP, either in the UK or the rest of the world. The information and references below reflect current practice, and may change as more research is done and our understanding of the condition improves.

  • You may be offered a drug, ursodeoxycholic acid (also referred to as urso or UDCA; see our page about UDCA for more details) that can help improve your liver function and ease the itching. Some researchers also believe that it will help to protect your baby.
  • You may be asked to come into hospital more frequently to have your baby’s heart rate monitored (this is called a cardiotocograph) or to have additional ultrasound scans of your baby to check on your baby’s well-being and growth. There is no evidence that this is of any use in an ICP pregnancy, but click here to see what we say about this.
  • You may be asked to be mindful of your baby’s movements. This is something that applies to all pregnant women, and you should immediately contact your hospital if your baby’s movements change, slow down or stop.

Your baby may have to be delivered early.

  • ICP is associated with an increased risk of premature birth. This may be because your body goes into labour early, in which case it is called a spontaneous preterm birth, or because your doctors decide to deliver your baby early, called iatrogenic preterm birth.

    Your doctor may decide to deliver your baby early because they feel that the risk of continuing the pregnancy outweighs the risks associated with being born early. In ICP the specific risk that doctors worry about when making the decision to deliver babies early is the risk of stillbirth.

    As studies have shown that the majority of stillbirths in women with ICP occur after 37 weeks of pregnancy, many doctors aim to deliver babies from affected pregnancies at between 37 and 38 weeks of pregnancy in an attempt to reduce this risk.

  • However, there has been research to suggest that if the bile acid levels have always remained under 40 µmol/L, the pregnancy could be allowed to progress as normal, permitting spontaneous labour to occur. But in the absence of large trials to prove that this is safe (and researchers still also have to prove that bile acids have been the cause of stillbirth), many doctors are continuing to deliver the baby by 37–38 weeks. This approach also relies on the fast return of bile acid results (withing 24 hours), because we know from our own research how quickly bile acids can rise (and fall).

  • A more recent study (Geenes et al. 2014; see References below) suggests that some babies may need to be born earlier than 37 weeks in severe ICP, depending on the level of the bile acids (severe ICP is defined by researchers as bile acid levels being greater than 40 µmol/L).

As you can see, the decision about when you should meet your baby is not an easy one to make. We therefore suggest that you talk to your doctor about what is best for you and your baby, taking into account what is known from currrent research.

Our suggested management guideline, based on practice in UK hospitals, can be found here.

References

Geenes V, Chappell LC, Seed PT, Steer PJ, Knight, M, Williamson C. Association of severe intrahepatic cholestasis of pregnancy with adverse pregnancy outcomes: a prospective population-based case-control study. Hepatology 2014; First published online 26 February 2014; DOI: 10.1002/hep.26617
PDF

Kohari KS, Carroll R, Capogna S, Ditchik A, Fox NS, Ferrara LA. Outcome after implementation of a modern management strategy for intrahepatic cholestasis of pregnancy. J Matern Fetal Neonatal Med 2016; 15: 1–17. DOI: 10.1080/14767058.2016.1212833 [Epub ahead of print]

Lo JO, Shaffer BL, Allen AJ, Little SE, Cheng YW, Caughey AB. Intrahepatic cholestasis of pregnancy and timing of delivery. J Matern Fetal Neonatal Med 2015; 28(18):2254–8.

Marschall HU. Management of intrahepatic cholestasis of pregnancy. Expert Rev Gastroenterol Hepatol 2015; 9(10): 1273–1279

Ovadia C, Williamson C. Intrahepatic cholestasis of pregnancy: recent advances. Clin Dermatol 2016; 34(3): 327–334. doi: 10.1016/j.clindermatol.2016.02.004.

Puljic A, Kim E, Page J, Esakoff T, Shaffer B, LaCoursiere DY, Caughey AB. The risk of infant and fetal death by each additional week of expectant management in intrahepatic cholestasis of pregnancy by gestational age. Am J Obstet Gynecol 2015; 212(5):667.e1-5

Royal College of Gynaecologists. Obstetric Cholestasis (Green-top Guideline No. 43). https://www.rcog.org.uk/en/guidelines-research-services/guidelines/gtg43/ (currently awaiting revision).

Will ICP harm me?

While ICP is a distressing condition, it’s still classed as being a benign (harmless) condition of pregnancy and the symptoms will resolve soon after your baby is born. However, there are some other consequences that you should know about.

Physiological

  • Severe excoriations – scratch marks – from constant scratching.
  • An increased risk of post-partum haemorrhage (PPH) – very heavy bleeding after the delivery of your baby – but this is thought to affect less than 10% of women. Treatment with oral vitamin K may prevent this.
  • Several studies have shown that gallstones occur more commonly in women with ICP. Because ICP is associated with gallstones you may have had gallstones or been diagnosed as having them at the time of pregnancy. You could also develop them later on in life. Your doctor may recommend that you have your gallbladder removed (cholecystectomy), but research does not show that this reduces your chances of developing the condition in a subsequent pregnancy. If you haven’t had a liver ultrasound scan you may want to ask your doctor for one, as it is another way of excluding any other liver problems that may be causing your cholestasis (cholestasis simply means sluggish or interrupted bile flow).
    Gallstones
    Gallstones
  • Some women develop itching that is termed ‘cyclical itching’. This can usually be linked to ovulation or the start of menstruation. It generally only lasts for a few days and is not as intense as the itching experienced during an ICP pregnancy. There has been no research to explain why this happens, but current thinking suggests that it happens because your liver has been left ‘sensitive’ to hormone fluctuations – hence the link to ovulation and menstruation.
  • Some women have reported that they experience itching again in times of extreme tiredness and stress, but the reasons for this are not yet known.

Psychological

We know (because you tell us) that many women suffer increased anxiety due to the potential (albeit small) risk of stillbirth. Add to this the effects of sleep deprivation because of nocturnal scratching and it doesn’t need a full clinical trial to suggest that women who have ICP may have an increased risk of depression during, or after, the pregnancy. Although this has not been fully investigated we would recommend that you let someone know if you are finding it difficult to cope – or you can ring our Support line to talk to someone.

Future health

Recent research suggests that women with ICP have an increased risk of developing Type 2 diabetes and/or cardiovascular disease in later life. This is because ICP is a metabolic disease and it’s thought that the metabolic changes that take place during an ICP pregnancy have an effect not only on the woman but also on her children. There is also some suggestion that women who have had ICP may have an increased risk of biliary tree cancer in later life. We must stress that this risk is very, very small (your risk of developing something like breast cancer is much higher), but we have received advice from hepatologists that it makes sense to have annual liver function and bile acid tests. This is very new thinking and your doctor is unlikely to be aware of this advice. It’s all very early research, so much more is needed.

Future pregnancies

If you have had ICP, the chance of it occurring in a future pregnancy is between 60% and 90%. The risk is slightly less if this is a singleton pregnancy following a twin or triplet pregnancy.

Will ICP harm my baby?

ICP gives rise to several risks to your baby.

Preterm birth

Preterm birth is defined as delivery before 37 weeks. In ICP this may occur because labour begins spontaneously before 37 weeks or because doctors recommend induction of labour before 37 weeks (known as iatrogenic preterm birth). Induction of labour is not an easy decision to make and there is little research to give clear guidance on this. Two papers that may help you to better understand the risks are Glantz et al. 2004 and Geenes et al. 2014 (PDF downloads).

Most specialists in the condition tend to aim for delivery at 37–38 weeks in their care plan, but it could be later or earlier than this depending on bile acid levels. Where women have extremely high bile acids some doctors are suggesting that delivery earlier than 37 weeks may be better (Geenes et al. 2014).

There is also research that suggests that if your bile acids have always been under 40 µmol/L you may be able to wait for spontaneous labour. However, this relies on a number of factors:

  • That bile acids (and not something else) are the cause of stillbirth (researchers are still working on showing how this happens)
  • A fast turn-round of bile acid results (within 24 hours)
  • No in-depth study has been made of women who progress beyond 38 weeks

This is something that you will need to discuss with your own doctor to see what their views are. See our suggested guideline for diagnosis, treatment and management of ICP.

Meconium staining

Meconium is the first poo that a baby passes. In some cases the baby may poo before it is born. This is very common if the baby is overdue, but less common if not. In ICP there is an increased risk of the baby passing meconium before delivery, even if the baby is born prematurely. However, the PITCH trial (2009) showed that there was a reduction in meconium staining of the amniotic fluid for women taking UDCA, although this involved a relatively small number of women. A larger trial called PITCHES has now started to try to confirm this.

Neonatal admission

There is an increased risk of your baby being admitted to the neonatal unit, although many babies only stay a short while. In ICP common reasons for the baby being admitted to the neonatal unit are that they are born prematurely and need some extra help with breathing or feeding. Your doctor will be able to explain more about the reasons for admission to the neonatal unit and what it may mean for the baby.

There is also a suggestion that very high bile acids may impact on the production of lung surfactant in the fetus, which could result in something called ‘bile acid pneumonia’. This in turn increases the risk of admission to the neonatal unit for oxygen therapy (see Zecca 2004).

Stillbirth

The most feared complication associated with ICP is stillbirth. Several studies have reported that stillbirth is more common in ICP than in uncomplicated pregnancies, but the reason for this is not clear – although as we have previously discussed this may be linked to high bile acid levels.

It has been reported that the risk of stillbirth in ICP is increased if there are also other complications of pregnancy, including pre-eclampsia and gestational diabetes. Current estimates of the risk of stillbirth in ICP are between 1% and 4%. This means that stillbirth is between 2 and 8 times more common than in uncomplicated pregnancies.

Bile acids – what’s all the fuss?

As we have previously mentioned, ICP is associated with potential problems for your unborn baby. How this happens and whether bile acids are the definite cause of stillbirth has yet to be proven. However, researchers are working on this, until it can be shown otherwise we will continue to advocate the importance of the role of bile acids in diagnosing, treating and managing an ICP pregnancy. The most recent research suggests that at the very least bile acids are a possible sign (a marker) of risk, so here we write about what bile acids are and why are they are thought to be a problem for some babies.

What are bile acids?

Bile acids are made (synthesised) from cholesterol in the liver. They start life as primary bile acids and in a further process (conjugation) they are converted into bile salts, which is why some doctors will call them bile salts and others will refer to them as bile acids. They are then transported from the liver into the gallbladder in bile.

Bile acids are essential, as they help the body digest food and absorb the fat-soluble vitamins we need for our bodies. During a meal, the gallbladder contracts and deposits bile into the gut (if you have had your gallbladder removed, bile will be secreted directly to the gut). Once there, and with the help of bacteria in the gut, the bile acids are turned into secondary and tertiary bile acids, including UDCA. They are then recycled, and around 95% of them are transported back to the liver via the hepatic portal vein. The remaining bile acids/salts are excreted in the faeces (poo). This entire process is called the enterohepatic circulation.

Enterohepatic circulation

(Tap to enlarge)

(Click to enlarge)

In ICP there is no evidence that individual bile acids need to be measured, so most laboratories will perform a total bile acid measurement, which includes both bile acids and salts. Click here for a pictorial representation of bile acid.

Bile acids

(Tap to enlarge)

(Click to enlarge)

What happens to bile acids in ICP?

In ICP the transport of bile acids across the liver doesn’t happen as efficiently as it should. The bile acids accumulate in the liver and eventually leak back into the blood, causing raised levels in the blood. Doctors refer to this as being ‘cholestatic’.

Because the bile acids are quite toxic it is important to try to reduce the levels. They are not thought to be harmful to you during an ICP pregnancy because they are only raised for a limited amount of time, but they may be the reason why some babies have been born prematurely or stillborn. As previously discussed, exactly how bile acids are involved is still not fully understood. Some studies have investigated their effect on the placenta and other studies have looked at their possible effect on the baby’s heart. Further research is needed to identify whether either or both of these factors are implicated in the risk to the baby, and it is important that this research continues. For the moment, researchers advocate a cautious approach to managing the condition.

Bile acids have their own circadian rhythm, which means that they naturally rise and fall (within normal reference ranges) over a 24-hour period. The time of day at which you have your blood taken to measure your bile acids can make a small difference to your result, and any increase (within normal reference ranges) doesn’t mean that your bile acids are going to become abnormal or are rising – it could simply be that you have had them tested at a time of day when they are generally a little higher. They also rise after eating, but there is no evidence to suggest that you need to fast for the test – in fact it’s possible that it’s better to know what they are after eating so that you can know how high they can become.

Researchers don’t know for sure when the best time is to have bile acids measured if you are being tested for ICP or you have already been diagnosed with the condition, but we suggest that you leave around 90 minutes after eating before being tested as levels will have peaked by then. Given what we have written it may also make sense to be consistent about the time of day you have your test and what you have eaten beforehand. There has been no research about this either, but by doing this you will know that your results have not been affected by testing at different times or by eating different food.

Is there anything else I can do?

Other things that women have found useful in the past include:

  • Lower fat diets (but not ‘no fat’)
  • Healthy eating
  • Rest
  • Cool clothing
  • Relaxation or meditation
  • Counselling

Some women have tried complementary medicines such as milk thistle and dandelion. None of these remedies has been formally tested in ICP pregnancies. However, because these remedies contain active ingredients it is important that you discuss this with your doctor.

Homeopathy does not contain active ingredients, despite its practitioners’ claims. There is no evidence-based research to support its use. As such, ICP Support does not support its use to treat ICP.

Women are generally advised to avoid alcohol in pregnancy, and although it has no direct effect on ICP, this is a sensible approach.

Birth of your baby

Your baby can be delivered vaginally.

  • There is no evidence to show that it is safer for your baby to be delivered by Caesarean section (c-section), but as you will probably need to have your baby delivered earlier you are likely to be induced. As with any first-time mother-to-be, this means induction may not work and your risk of having to have a c-section increases.
  • Your doctors may decide that your baby will need to be continually monitored during labour, although there has been no research to suggest that this is necessary. Talk to your consultant about what you both feel is best for your and your baby. Bear in mind that ICP still carries a risk of fetal distress during labour, which, if your bile acid levels are over 40 µmol/L, might help you make a decision about what is the safest option for your baby.
  • Having an early baby can be a worrying time for you, especially if your baby decides to come without giving you much notice! But if you do know that your baby may have to spend some time in a special unit (referred to as a neonatal intensive care unit (NICU), neonatal unit (NNU) or special care baby unit (SCBU)) you can ask to be shown round the ward so that you can prepare yourself. It can look quite overwhelming when you first see it: lots of machines and monitors, and some very tiny babies. Many parents have been in this situation and are very happy to talk to you about their experiences, so contact us on our Support line or come and find us on Facebook, where we will be waiting to support you.
  • Your baby will not need any special checks after the birth. However, it is important that you know that because ICP is a genetic condition your baby may have inherited your genetic changes. This may mean that if you have a girl she has around a 14% chance of ICP in any pregnancy that she may have. If you have a boy, he may pass the gentic change down to his children. There is also some suggestion that children of ICP women have a slightly increased risk of developing Type 2 diabetes in later life. This is still being researched.
After your baby is born
  • You will need to have follow-up checks on your liver. This is because sometimes there may be an underlying liver condition which is not ICP that has caused the itching and abnormal liver readings during your pregnancy. Ideally the check-up should include a liver function and bile acid test. You don’t need to rush to have this done – 6–12 weeks is fine.
  • If the results still show elevated ALT/AST or bile acid levels you will need to have the tests repeated. If, after six months, your levels are still not improving it may be advisable to be referred to a hepatologist (liver specialist) or, if there not one in your area, a gastroenterologist with a special interest in the liver. You may have another liver condition (although this is quite rare) or your liver is just taking a little while to settle down. This has been known to happen with women who have had ICP. Whatever the underlying reason you will need to see a specialist who will advise you on what to do next.
  • We already know that women who have ICP have a greater risk of developing gallstones, but there is some suggestion that women who have had ICP may also have an increased risk of developing other forms of liver disease, such as biliary tree cancer, in later life. We must stress that this risk is very, very small (your risk of developing something like breast cancer is much higher), but we have received advice from a hepatologist that it makes sense for women ho have had ICP to have annual liver function and bile acid tests. This is very new thinking and your doctor is unlikely to be aware of this advice.
  • Recent research suggests that women with ICP have an increased risk of developing Type 2 diabetes and/or cardiovascular disease in later life. This is because ICP is a metabolic disease and it’s thought that the metabolic changes that take place during an ICP pregnancy have an effect not only on the woman but also on her children. It’s all very early research, so much more is needed.
Contraception

You will have to think carefully about what contraception you use after you have your baby.

  • The only methods of contraception that are likely to cause problems for women who have had ICP are those containing hormones. However, there have been no large studies regarding the use of contraception following an ICP pregnancy, so you may be given conflicting advice about what you can or can’t use. Given that it has yet to be established whether it is progesterone or estrogen that ‘triggers’ the condition, it may be prudent to use only those hormonal forms of contraception that bypass the liver, such as the Mirena® coil.
  • However, anecdotal (not medically proven) evidence is showing that many women can tolerate the mini pill and some women are also able to use a low dose combined oral contraceptive pill. If you do decide to take the pill (the decision should be made in consultation with a doctor) it is important to make sure make sure that your liver function is normal before you begin. It should also be checked again approximately six weeks later. This is easily checked by requesting a liver function test (blood test). If you start to itch after you begin to take the pill you should stop. However, this itching shouldn’t be confused with cyclical itching, which is something that some women experience after having ICP and can be linked to ovulation or the start of menstruation. This itching normally only lasts for a few days and disappears once ovulation has taken place or the woman’s period starts.
  • It is worth noting that some women who have contacted us report being unable to tolerate any form of contraception that contains hormones, including the Mirena® coil. Of course there are other forms of contraception that you can use, and you may want to discuss these options with your GP, nurse, midwife or local family planning clinic.
  • There are of course other methods of contraception that do not contain hormones. These can be found here.

References

Marschall HU. Management of intrahepatic cholestasis of pregnancy. Expert Rev Gastroenterol Hepatol 2015; 9(10): 1273–9. doi: 10.1586/17474124.2015.1083857

I’ve had my baby and I’m still itching – what could it be?
  • If you have only recently had your baby the itching should have at least decreased in severity and will go away in due course. However, if you are still itching four weeks after the birth you should see your GP for further investigation. Very occasionally women are discovered not to have had ICP but some other form of liver disease. You may need a referral to a hepatologist (liver specialist) or a gastroenterologist who has a special interest in the liver.
  • If it is some time since you have had your baby, it may be that your itching is what has been termed ‘cyclical itching’. This can usually be linked to ovulation or the start of menstruation. It generally only lasts for a few days and is not as intense as the itching experienced during an ICP pregnancy. There has been no research to explain why this happens, but current thinking suggests that it happens because your liver has been left ‘sensitive’ to hormone fluctuations – hence the link to ovulation and menstruation.
  • Some women have reported that they experience itching again in times of extreme tiredness and stress, but the reasons for this are not yet known.
  • Contraception is also a possible cause of itching.
Will I get ICP again?
  • Reported recurrence rates vary, with some researchers stating 60% and others up to 90%. What is known is that women who have ICP in one pregnancy are very likely to develop it again in a subsequent one.
  • If you are expecting more than one baby this increases your risk of developing it.
  • If you have or have had IVF (fertility) treatment this also seems to be associated with an increased risk of developing ICP.
  • And although it’s not typical, ICP can present before 28 weeks of pregnancy (called the first and second trimesters) as opposed to the usual onset, which is in the third trimester (28 weeks onwards). The earliest reported diagnosis has been at 8 weeks of pregnancy. Your health professional may not know this can happen, so you may need to be prepared to be assertive about having the blood tests you require if this happens to you.
Can I take HRT?
There has been no research regarding HRT and ICP. As with hormonal contraception, it’s a question of trying it to see what happens. Anecdotally (not scientifically proven) some women have reported successful use of HRT. A starting point would be to see your GP or practice nurse to discuss this with him or her. It would also be a good idea to have your liver function checked before you start to take HRT.