1. Learned misinformation
There are so many misconceptions regarding ICP, that it often fails to be recognized properly. You can read the top 10 misconceptions to learn more. There are even many other misconceptions that didn’t make the list. One of the most frustrating parts of these misconceptions is that they vary so greatly from one doctor to another. One doctor may say that it can’t be ICP because ICP itching is only on the hands and feet, whereas the next may assert vehemently that it’s not ICP because ICP itching is all over, not localized to the hands and feet. So many misconceptions: normal liver functions rule out ICP, ICP is only in the third trimester, ICP does not pose a risk to the unborn baby. The list seems infinite and exhausting at times. Where does all this misinformation come from? Many of them are relics of times when we didn’t know as much about ICP as we now know. When the condition was first described it was considered “benign”, and this and many other misconceptions have stubbornly persisted to this day. This happens because doctors learn from other more experienced doctors. If the teacher learned these misconceptions as fact many years ago, these misconceptions can be passed on to the student. ICP is a rare disease, and is not as high-profile as other more common pregnancy condtions such as gestational diabetes, so new information is not spread as readily. This is why ICP Care’s mission of raising awareness is so incredibly important.
2. Proof vs. evidence vs. anecdotes
There is this strange disconnect between patients and their doctors over the difference between these three words. Sometimes it is the patient that simply doesn’t understand the difference, and occasionally it is a doctor who is unwilling to use treatments that are based on evidence rather than proof. Let’s take a look at these three words. Scientifically speaking, proof has a very specific meaning, and it’s often much different than what the average person ascribes. When a scientist looks for proof, it all comes down to statistics. Statistics is a branch of mathematics that can tell us how likely it is that something occurred because of random chance, versus how likely it is that the difference seen was due to the event being studied. For example, we give a group of women the medication Ursodiol and another group is not given the medication, and the women who took Ursodiol had healthier babies. Statistical analysis tells us how likely it is that this happened by chance or how likely it is that it happened because of the medication. There are many factors that influence this calculation, but one of the most important is the sample size – how many people were studied. Unfortunately for us, ICP is uncommon enough that it is very difficult to get enough people in a study to reach a level that would be considered proof. Even with our best statistical analysis, we still don’t have enough to “prove” for absolute certain that Ursodiol can prevent stillbirth.
Evidence is something else entirely. We do have a TON of evidence that Ursodiol may prevent stillbirth. There is PROOF that Ursodiol does lower the bile acids in the mother’s blood. There is also PROOF that higher bile acids are correlated with higher rates of complications. We can use our deductive reasoning to guess that Ursodiol lowering bile acids may reduce complications, but this is not the same thing as proof, because it’s entirely possible that there may be other factors involved. Evidence of Ursodiol’s benefits also abound: that it helps prevent premature aging of the placenta, that it protects the fetal heart against changes due to bile acids, that it restores the placenta’s ability to transport bile acids away from the baby, but we still don’t have that proof that it prevents stillbirth. Sometimes doctors tell their patients that they won’t prescribe them Urso because there is no proof that it works. While this is technically true, it is a bad idea. With all of the accumulating evidence of the multitudinous ways in which Urso may help prevent stillbirth, as well as the PROOF we have that Ursodiol improves laboratory parameters, reduces itching, and is totally safe to take, our common sense can tell us that we should have Urso in our pregnancies. Read more about Urso here.
What about anecdotes? In our ICP Care support groups piles of anecdotes pop up which spawn misconceptions. One of the most common is that bile acids spike at the end of pregnancy. If one person reports this in one of the support groups, suddenly everyone becomes concerned about this phenomenon. Should we base management decisions on anecdotes? No! Why not, you ask? Well, many reasons. First of all, what is a spike? Sometimes people say this when their bile acids go from 4 to 20. I wouldn’t call this a spike. The ICP is still mild. This difference could easily be seen because of a fatty meal eaten before the blood draw, or any number of other reasons. What if we see a spike from 4 to 80? That’s a big difference, but there is still not enough information. Were there other factors? Did the person start a course of antibiotics that could be contributing? How long had they been on Urso? Perhaps it hadn’t had enough time to work yet. Were they on Urso at all? Did they have an underlying liver issue that they didn’t even know about yet? There are many things that could have contributed. What if there is a published case report of a well-managed case of ICP which had a sudden spike at the end (which there is not)? Should we base our management decision on this? The answer is still no. Management decisions cannot be based upon a single outlier, or even several. Consider what would happen if we delivered all babies at 34 weeks because of a case report of spiking bile acids. This would cause more problems (including neonatal death) than would be solved.
3. Symptoms don’t match labs
One of the most frustrating things that can happen when someone is battling an ICP diagnosis is when her itching is severe but her labs persistently return as normal. Usually normal labs are very reassuring, and they can be used to rule out causes of symptoms in a patient. Not so with the ever-troublesome ICP. Cases have been recorded in which it takes weeks or months for labs to become elevated after itching begins. This phenomenon baffled doctors for years, since bile acids were assumed to be the cause of itching in ICP. Now it is known that itching is related to a completely different chemical called lysophosphatidic acid, which is elevated in women with ICP. Many of us are frustrated and defeated by a doctor who doesn’t want to retest after normal test results. However, if itching continues, bile acids should be retested every 1-2 weeks.
4. Focusing on the wrong things
Sometimes women with ICP begin to fixate on aspects of their care that aren’t critical, or in some cases even could be considered insignificant. It is easy to do. Pregnancy in general is an emotionally-charged time. Then suddenly a rare, mysterious disease is thrown into the mix. Of course the first thing we want to do is learn more about this unheard-of condition. Turning to our ICP Care support groups, we learn that other women are getting care that is different than our own. Suddenly panic ensues. Are our doctors missing something? Are our babies at risk? Sometimes the answer is that our doctors are indeed missing an important aspect of our care, but far more frequently these differences exist because there are many aspects of ICP care plans for which there are no consensuses. There are two critical parts of the management of an ICP pregnancy: the medication Ursodeoxycholic Acid (Actigall/Ursodiol), and early delivery, typically by 36-37 weeks gestation. If these two management practices are included in your care plan, then you are in good hands. At ICP Care we advocate for a number of other practices, but it is important to remember that there is no consensus on these practices, and so exact treatment plans will vary based on doctor and hospital policy. Ideally we would love to see every ICP pregnancy monitored closely, including repeat blood work once or twice a week to evaluate the effectiveness of the medication (possibly leading to incorporation of additional medications into the regimen to create a synergistic effect) and to help determine ideal timing of delivery, and fetal monitoring at the same frequency to evaluate how baby is coping with the disease.
There are also times when women become fixated on something their doctor says that doesn’t agree with what they have learned. I am guilty of this myself. It is upsetting and frustrating when what our doctor tells us conflicts with the information we have already found. One of the most common offenders is when women are told that the medication does not do anything for the baby – it is only to help with the mother’s symptoms. I promise you, it is not necessary to switch doctors if yours believes this to be true. As long as you are getting the medication it doesn’t matter what the doctor believes.
5. Rare disease
Many doctors, unless they have seen ICP before, are skeptical of an ICP diagnosis when they are first approached by a suffering mom. This is because ICP is a rare disease and doctors are trained to suspect the most common causes of symptoms first before jumping to the rare diagnosis. For example, if a patient comes to their office with ear pain, they will investigate an ear infection before assuming the rare diagnosis of neurofibromatosis. It can be incredibly frustrating when a doctor doesn’t believe what you already are sure is true, but it doesn’t matter if the doctor is convinced, as long as they are willing to run the test. Of course it is always possible that someone who thinks she has ICP turns out to be wrong as well. There are other more common causes of itching in pregnancy, such as PUPPP. While PUPPP doesn’t look like ICP, sometimes women do confuse the two.
6. No such thing as textbook ICP
Women in our support groups at ICP Care are routinely told that they don’t have ICP because they itch everywhere and ICP is only on the hands and feet. Or that they don’t have it because they only itch on the hands and feet and they should itch everywhere. Or that it is impossible to have ICP in their first trimester. Or that they don’t have it because they aren’t currently scratching so hard that they are breaking skin as they sit in the doctor’s office. Or that they don’t have it because the Urso didn’t make their itch go away. Or because they don’t have elevated liver functions, or they aren’t jaundiced. Or because a million other things are or aren’t true about their specific case. The truth is that there is no such thing as typical ICP. While we do see a cluster of ICP cases which follow a specific pattern, many others don’t. This is because there are many different genetic variants of ICP, and because there are many other factors that influence our specific variant as well, such as environmental causes, added hormonal load due to twins, IVF, etc., and many others we have yet to discover. As many different women there are with ICP, there are that many different types.
7. Inappropriate reference ranges
Until recently two of the largest labs in the country had inappropriate reference ranges for their bile acid tests, which made it difficult for women with mild levels of bile acid elevation to get diagnosed. Thankfully due to the hard work of dedicated ICP moms, both labs have now updated their reference ranges. However, we still run into problems on occasion with people who use Quest Diagnostics. The problem is no longer with the lab, but with the ordering doctor. There are two different bile acid tests, and only the test marked for pregnancy will provide the correct reference ranges.
8. Lack of partnership
It is important to have a collaborative relationship with your doctor. Both patient and doctor are equally important parts of the health care team, and both need to make an effort toward building a partnership. Lack of partnership can stem from the patient, the doctor, or both. If the problem stems from the doctor alone, there is little that can be done to change their approach. Sometimes, however, we are emotionally strained, we are stressed, we are afraid, and we don’t have the patience. Sometimes it can feel as if we are going to war with our doctors to make sure our baby gets the care he or she needs. This approach rarely works well, even if we do end up getting what we want. The relationship we have built with our doctor is damaged and it only makes it more difficult for the doctor to take us seriously in the future.
9. “Dr. Google”
Sometimes “Google” is the worst type of curse word for doctors. People are constantly self-diagnosing with endless unlikely diseases and disorders, and it can be nearly impossible at times to get them to believe that there is a simpler explanation. The sad truth is that a large percentage of women with ICP self-diagnose by googling their symptoms and finding our ICP Care website. One of the best things you can do if you find yourself in this situation is to refrain from using the words “google” or “internet”, because while some doctors will listen, others ears turn off as soon as they hear those words, and you can find it impossible to get them to take you seriously. Instead, print off one or two reliable resources (not a dozen of them please!) and tell your doctor that you are in contact with the national non-profit ICP Care, and you received these resources to help explain your symptoms.
10. The wrong fit
Occasionally, a doctor is simply the wrong fit for the patient. It may be that this particular doctor is not receptive to learning more about a rare condition, or it may be as simple as a clash of personalities. I always urge women to attempt to bridge the doctor-patient disconnect before giving up, but in some cases that divide just cannot be spanned. In these cases the best thing you can do is to find a new doctor. Never assume that you can’t get a new doctor because you are late in your pregnancy. Most doctors will see you if you have been receiving proper prenatal care, especially if you explain your situation. In the end you are your baby’s best advocate.