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Frequently Asked Questions |
My bile acid blood tests are normal and I am still itchy– Should I have another blood test?
Yes, you should be retested as bile acid may take several weeks to show in your blood work.
My bile acid blood tests are normal - Should I still be delivered early?
If you continue to itch and blood work is normal since the bile acid test results take up to two weeks to receive from most labs patients and doctors need to make a decision based on the risk to the baby. Also, it may be that you have been given medication that has brought your bile acids back down to normal or at least to under 40 micromol/L. and since the link to bile acids being the cause of stillbirth is strong, doctors take the side of caution and, even when the bloods levels are normal, deliver the baby by 37. Please refer to the links page of the website for medical reports with information on ICP/OC.
ICP/OC has been reported to be associated with an increased risk of spontaneous premature birth, fetal distress and stillbirth. With active management (which usually means treatment and choosing to deliver early) the risk of stillbirth in an ICP/OC pregnancy is believed to be the same as that for a normal pregnancy (1%). Most hospitals chose to monitor women with ICP/OC more closely and to deliver the babies early (no later than 37) in order to minimize any risk to your baby. Reprinted with permission from www.ocsupport.org.uk.
My doctor said that if I had ICP I would be jaundiced. Is this true?
This is a false statement. There seems to be a widespread 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 doesn't Aveeno baths and 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. Pruritus caused by ICP does not respond to either because of it's internal nature.
I have a rash all over and am itching everywhere! Is this ICP?
Maybe, maybe not. 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 no evidence as yet to show that expecting more than one baby increases the risk of ICP/OC-related fetal distress or stillbirth (although it does increase your chances of developing ICP/OC). You also have a higher risk of going into early spontaneous labor. Reprinted with permission from www.ocsupport.org.uk.
Should I have my gall bladder removed to cure ICP?
No, unfortunately for ICP sufferers, a cholecystectomy will not cure cholestasis of pregnancy. For most women, there are no changes in the intensity of itching after a removal. ICP sufferers have a greater incidence of gall stones, often creating the need for gall bladder removal, but the process itself is not a cure and generally does not have an affect 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.
Is there anything else I can do?
Other things that women have found useful in the past include: lower fat diets, rest, cool clothing, relaxation or meditation, and counseling. Some women have tried complementary medicines such as milk thistle and dandelion. However, it is important, as with all complementary medicines, that you discuss this with your doctor. Reprinted with permission from www.ocsupport.org.uk.
Reported recurrence rates vary with some researchers stating 60% and others up to 90%. What is known is that women who have OC in one pregnancy are very likely to develop it again in a subsequent one.
Will it be worse next time?
Anecdotal (not scientifically proven) evidence tends to suggest that ICP/OC can be worse and perhaps even start earlier. My own thoughts are that in the next pregnancy you are more likely to be ‘waiting’ for it to start and become extra sensitive to any itch. In the previous pregnancy, when you didn't know about OC, you may have just dismissed the onset of the itching because it was so mild.
And, I have known women who have reported that the symptoms have been milder the next time round and they have started later in the pregnancy. Don’t forget, there is always a chance you may not develop OC at all in a subsequent pregnancy! Reprinted with permission from www.ocsupport.org.uk.
Can I breast feed my baby after ICP?
Absolutely! Breastfeeding is completely safe and normal after ICP. Some doctors may suggest for their patients to continue their prescription of Actigall/Urso to help rid the body of "leftover" bile acids. 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.
Will the itching go away after delivery?
ICP is believed to be a condition caused by a gene mutation resulting in the liver's inability to cope with high levels of estrogen present in the body. However, 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, but 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 Primary Bilary Cirrhosis, Hepatitis, AIDS, anemia, Benign Recurrent Intra-hepatic Cholestasis, and bile duct obstruction.
Do I need to have my liver checked by a specialist after my 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/OC 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/OC. Whatever the underlying reason you will need to see a specialist who will advise you on what to do next. Reprinted with permission from www.ocsupport.org.uk.
What contraception can I use after my OC pregnancy?
The following information has been based on conversations Jenny Chambers has had with Professor Elwyn Elias & Dr Catherine Williamson. The only methods of contraception that are likely to cause problems for women who have had ICP/OC are those containing hormones. However, there have been no large studies regarding the use of contraception following an ICP/ OC 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 intra-uterine device. However, anecdotal 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 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 must stop. However, this itching shouldn't be confused with cyclical. Reprinted with permission from www.ocsupport.org.uk.
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