You can't feel high cholesterol.

Once a week, Ingeborg Booij Liewes-Thelosen runs the Familial Hypercholesterolemia (FH) clinic, where she sees seven to eight FH patients at Radboudumc. During these visits, she conducts routine checkups and talks with the patients she sees there. After all, how are their lifestyles, their relationships with family, their medication, and any plans for pregnancy?

Pregnant with FH

“It’s very important for a woman to let us know if she is pregnant or planning to become pregnant. Ideally, she should stop taking the medication one month before she becomes pregnant,” said the FH consultant. “I then discuss with them the alternatives to use during pregnancy. Women really need to stop taking statins for nine months, because in the worst-case scenario, it can cause harm to the fetus. And of course, you want to prevent that at all costs. Young women have relatively few risk factors, so a pregnancy without medication and with proper guidance usually goes very well.”

Family

During the clinic visit, the FH counselor also discusses communication with family members. “Many people aren’t aware of how important it is to discuss their FH diagnosis with their family. For example, during an FH family day, I noticed people coming up to me to say that the penny had finally dropped for them. Only then did they realize what they could prevent by telling their family that FH runs in the family and that it’s best for people to get checked.”

Medication

“Many people find it a hassle to take medication for FH,” says the FH counselor. “It’s also difficult to take medication when you don’t feel the effects right away. Plus, you can’t feel high cholesterol, so why take medication if you’re not experiencing any symptoms? If you have a headache, you take a paracetamol. That’s fine. But taking medication when you feel physically fine is still a challenge.”

There are several treatment options available. You can take medication in tablet form, but for people for whom that is not effective enough in lowering high cholesterol, there is also medication that is administered via injection. There are also people who do not tolerate the tablet form well, in which case injections are also an option. “We’re a bit cautious about that last option,” says Ingeborg Booij Liewes-Thelosen. “This medication is very expensive, so we’re a bit more careful with it,” says the FH consultant.

A new mattress

“I always try to provide personalized care,” says the FH consultant. “That’s what makes the work so rewarding, because I see people of all ages. For example, people over 70 who could just as easily see their family doctor. Sometimes entire families are in the waiting room. I follow people for a long time. I see them year after year. Some patients are well-managed on medication, and with them I discuss healthy lifestyles—all the factors they can control themselves. Sometimes people think they’re doing really well in terms of lifestyle. For example, someone has quit smoking—smoking is really that bad for someone with FH!—and also thinks they’re doing well with their diet. It happens that I can still offer people insights into healthy cooking. Because coconut oil, for example, isn’t healthy at all. That oil contains a lot of saturated fat. Those small insights help people take another step forward. I really try to provide personalized care. Sometimes people suffer a lot from muscle pain when they take statins. For instance, I recently spoke with a young man who no longer had muscle pain after replacing his mattress. We thought it was due to the statins. We had a good laugh about that together.”

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