The chat message came through promptly at my morning start time. The words and exclamation marks clearly highlighted worry. “Just found out I’m pregnant! Taking a statin medication to lower cholesterol since 6th grade! Talked to my doctor and stopped taking it yesterday. But what damage have I already done? I know it’s a class X drug! Need info – please help!” Mae agreed to a phone call, and I logged off from our MotherToBaby live chat service and phoned Mae.

First, you may wonder why someone would be on a cholesterol-lowering medication since late elementary or middle school. Isn’t that extreme? Actually no- in Mae’s case she has an inherited condition called familial hypercholesterolemia – or “FH” for short. This is a condition that occurs in about 1 in every 250 persons but is underdiagnosed and therefore undertreated. A simple blood test checking cholesterol levels and a review of your family history (such as checking for heart attacks at younger ages) can help determine if you have FH. Much less common, a more severe form of FH, inherited from both parents, can occur.

To back up a bit, cholesterol is that fatty substance in our bodies that is needed in some amount, but too much cholesterol increases our chance for early heart disease. The lifestyle changes that are recommended to all of us, such as exercising regularly, avoiding smoking, and eating a healthy diet are also part of the treatment plan for FH (and Mae had been working hard to follow these guidelines). But, cholesterol lowering medications are still often a needed part of treatment because lifestyle alone won’t lower cholesterol levels enough in persons with FH. For some with FH, statin medications might be prescribed starting at 8-10 years old.

But what about the “category X” classification Mae mentioned-does this mean that statin medications are absolutely proven to increase birth defects? Fortunately, for Mae the answer is a resounding “no!” Many persons are not aware that the FDA decided in 2014 to phase out their letter category rating system. While an easy system to use, it was not a reliable system to predict pregnancy risk (see our January 2015 blog for more information).

So why were statins assigned that old category X? Well, the developing baby needs cholesterol to form properly so there is a theoretical concern that cholesterol-lowering medications could pose a pregnancy risk. Also, for many persons, particularly those without FH, stopping a cholesterol-lowering medication in the short term of a pregnancy is thought unlikely to significantly increase their heart disease risks. However, for some persons, avoiding all cholesterol treatments might pose concerns for both the pregnant person and baby. So, if you have FH, talking with your cardiologist and obstetrician about a cholesterol treatment plan is important when planning a pregnancy or when you learn of your pregnancy.

Most studies with the class of medications called “statins” have not found an increase in birth defects with accidental use early in pregnancy. This should provide some reassurance to pregnant persons who were taking statins before they realized they were pregnant, like Mae. (For more info, see our fact sheet on Statins in pregnancy.)

“I feel a little better. But, I wish there were more pregnancies that were studied. We need more info about medications we might have to take during pregnancy,” Mae said. At MotherToBaby, we completely agree! And I appreciated her lead to bring up our optional follow-up program. I let Mae know that in addition to providing information, we have a study team that follows pregnancy outcomes. This will allow us to provide more information to worried parents and their healthcare providers. So, if you find yourself like Mae drawn to the importance of this information and wondering how you can contribute, call 877-311-8972, email mothertobaby@ucsd.edu or you can volunteer for a study through our website. There is no cost to participate and pregnant persons are never asked to take a medication.

Mara Gaudette is a genetic counselor and received her Masters Degree from Northwestern University. Drawn to the satisfaction of providing immediate reassurance to worried women, she began educating the public about teratogens at MotherToBaby’s Illinois affiliate more than a decade ago. Today, she not only continues to counsel for MotherToBaby via phone, but also on live chat and email as part of MotherToBaby California’s team of experts.

MotherToBaby is a service of OTIS, a suggested resource by many agencies including the Centers for Disease Control and Prevention (CDC). If you have questions about exposures like cholesterol medication, please call MotherToBaby toll-FREE at 866-626-6847 or try out MotherToBaby’s text information service by texting questions to (855) 999-3525. You can also visit MotherToBaby.org to browse a library of fact sheets about dozens of viruses, medications, vaccines, alcohol, diseases, or other exposures during pregnancy and breastfeeding.

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