I must admit: for someone steeped in reading materials about cholesterol, I am sometimes a bit puzzled by lipoprotein(a). I will try to explain in what follows how I first learned about it and what resources I have used to learn more about it. Also, in my FH journey, I am also seeing a lot of people wondering what kind of specialists they should see. I mention a few of the ones I have used to understand more about this special lipoprotein.
I have known I have genetic high cholesterol since I was 8 years old. At the time (in 1983 Romania), they were just measuring total cholesterol (which mine was 734 mg/dl) and triglycerides. They did not measure all the different fractions of cholesterol you now see on your lab report, like LDL, HDL, VLDL, cholesterol ratio, etc ...
They started measuring my LDL (in addition to the total cholesterol) in 1998 when I moved to the United States and I was 23. At that time, my LDL was 475 mg/dl. I have known since I was 8, with the original diagnosis, that I had an increased risk for early heart attack or stroke, and I knew this not just from the literature available at the time, but also from my own family’s history.
But I did not hear about lipoprotein(a) until 2009. That’s right, this is 26 years since the original diagnosis, when I was 34 and had already been diagnosed with atherosclerosis, cardiovascular disease and coronary artery disease. The gentleman who first spoke to me about this new cholesterol particle called lipoprotein(a) was a pharmacist by trade who was running the lipid program at my cardiologist’s office. The cardiologist that I was seeing was absolutely stellar and knew a lot about dyslipidemia in general and hypercholesterolemia in particular, but he left the treatment of it to his pharmacist who was more in-tune with the newer treatments.
The pharmacist said at the time that in addition to knowing my LDL cholesterol (which at the time was 252 mg/dl), we need to also understand the value of lipoprotein(a) which is a newer cholesterol fraction that is also considered to increase the risk for cardiovascular disease.
According to the Wiki (https://en.wikipedia.org/wiki/Lipoprotein(a)), lipoprotein(a) was discovered in 1963. This is 12 years before I was born. So, for me to first learn about this at the age of 34, you can say news travels slowly in the medical profession, or at least used to.
In 2009 when I first learned about it, the test for lipoprotein(a) was not covered by any insurance and only some labs were performing it. So, my pharmacist that was running the lipid program sent my blood out somewhere else in the state to be analyzed. The result came back as 18 mg/dl and he concluded that it was great - not elevated at all.
Over the years, the test has become more and more routine. It is still not performed as part of a routine cholesterol check and you still need to ask for it specifically. But it is covered by insurance and just about any doctor can order it (not necessarily a specialist, like a cardiologist or lipidologist). The doctor must have a legitimate concern about your risk for cardiovascular issues, based either on other cholesterol levels or family history.
Many doctors have told me that there is no need to re-measure the lipoprotein(a) (like they measure the LDL every 3-4 months) because it stays the same for the length of your life, barring any severe disease (like a huge infection or cancer which I did not have). However, some doctors wanted it measured when they saw me for the first time.
You will find that some labs measure it in mg/dl and others in nmol/l which can make a difference too. So, occasionally, when I had to switch doctors the new ones wanted to have their own tests in hand from their own labs, measured according to their standards, so they re-did the lp(a).
This is how I know for sure that for me, lp(a) did not stay the same. Not even close. As you can see from the table below, it has been continuously going up, although my LDL cholesterol has been going down. Also, as you can tell, the unit of measures are not consistent.
The FH Foundation’s website (https://thefhfoundation.org/high-lipoprotein-a-101) notes that lp(a) could also increase at menopause and you can say that I might be reaching that age and this could probably be an explanation for the increasing levels in the past two years (I am 47 now).
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Over the years, I have also seen people who have a severely elevated lp(a) and close to normal LDL. They typically have had either a cardiac event or have been diagnosed with cardiovascular disease - something I am familiar with as an FH patient.
So, during my lifetime, I went from a definitely normal lp(a) value at 18 mg/dl to an elevated one at 63 mg/ dl, despite my expectations being set in the beginning that this should not be a concern for me, as the lp(a) remains relatively stagnant throughout our lives. As it stands today, according to the last lipidologist I saw last year, I now have a double risk for cardiovascular disease. Before he even measured the lp(a) he said he expected it to be elevated. Of course, with a complex open-heart surgery and a heart attack in my recent past, this is no surprise at all.
LDL has always been my nemesis, so I have always kept a close eye on that. Luckily, there are therapies that help keep my LDL as low as possible for me (I have Homozygous FH so it is hard to keep it at a normal level), but from what I know now, there are no therapies available on the market for lowering lipoprotein(a), outside of lipoprotein apheresis . However, some treatments are in the works: the FH Foundation’s site talks about possible future available treatments here (https://thefhfoundation.org/treating-high-lpa#:~:text=Lipoprotein%20apheresis%20is%20currently%20the,(a)%20from%20the%20blood.)
Another thing that is different from FH is that elevated lp(a) is actually very common: about one in five people have elevated lp(a) whereas about one in 250 people could have HeFH or about one in 250,000 people could have HoFH.
During my lifetime of 47 years, I went from not knowing about lp(a) at all to now, not only learning about its existence, but also about the risks it poses for people like us, to then learning about the frequency with which it can occur as well as seeing possible new treatments for it in the near future. Today, we have a foundation (The Family Heart Foundation - https://thefhfoundation.org/) that advocates for awareness for lipoprotein(a) and we even have an International Lp(a) Awareness Day on March 24.
I wanted to take this moment to celebrate this day by remembering my own journey with lp(a). I also wanted to celebrate the progress that science and patients, warriors like many of us, have achieved through the years in giving us more resources and creating more awareness about this silent killer.
Happy Lp(a) Awareness Day, everyone! Stay healthy and always know your numbers.
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