by Carolyn Thomas ♥ @HeartSisters
“After the shock of having a heart attack at age 39, I was a new mom at home with an infant, trying to make sense of being both a new parent and a heart disease patient”. Katherine Wilemon had known since age 15 that she had high LDL (“bad”) cholesterol, but years later was diagnosed with a cholesterol disorder called familial hypercholesterolemia (FH), and then with elevated levels of another fatty particle in the blood called lipoprotein(a) – Said out loud, this is called “LP-little-(a).
One in five people worldwide have the same cardiac risk factor that Katherine had. Dr. Henry Ginsberg at Columbia University, a leading expert on lipoprotein(a), explained in the New York Times: (“A Heart Risk Factor Even Doctors Don’t Know About”):
“People don’t know about it, physicians don’t know about it.” .
Most of us can live a long and happy life not ever thinking about low levels of LP(a) in our blood. A high level of LP(a), however, can quadruple our risk of a heart attack or stroke. How high is too high? Dr. Ginsberg tells us that LP(a) levels between 150 and 300 milligrams per deciliter of blood are dangerous, adding: “Those people can be disasters in terms of cardiovascular risk.”
LP(a) is a lot like that “bad” LDL cholesterol – but it’s more ‘sticky’.
High LP(a) is hereditary, meaning that those who have this genetic marker often have a known family history of relatives (a parent, sibling, grandparent, or child) who experienced heart attack or stroke diagnosed at an unusually young age, often before age 50. If one person in the family has LP(a), other close family members must be tested, too. Katherine Wilemon adds:
“It turns out that I passed these mutations down to one of my daughters.”
Katherine’s first heart attack symptoms were dismissed as heartburn by her doctor, despite Wilemon’s history of high LDL cholesterol, as she explained in an EveryDay Health article. Even at the hospital later on, she was met with “a familiar lack of urgency”, and was sent home. She went back to her doctor the next day when cardiac symptoms worsened, but he told her it was just anxiety.
“I told him that of course I was anxious! I knew that something was wrong with my heart, and that I was terrified I might be having a heart attack. I said I would not leave his office until he could guarantee me that my heart was okay, and that I was not in danger.”
Her doctor “begrudgingly” ordered a treadmill stress test – which was abruptly stopped when clinic staff saw her alarming results. Katherine was having what doctors call a widow maker heart attack. She was rushed to the hospital’s cath lab, where a coronary stent was implanted in her left anterior descending coronary artery. The cardiologist told 39-year old Katherine that she had “the arteries of a 70-year-old.” Her dramatic experience ultimately inspired her to establish the Family Heart Foundation.
Cholesterol travels through the blood on lipoproteins, which are made of protein and fat. Once heart patients are initially diagnosed, we all undergo routine blood tests to check our LDL (bad) cholesterol and our HDL (good) cholesterol numbers (among other blood fats) because these test results can indicate high risk for plaque blockages in our coronary arteries.
Plaques can either grow over time or suddenly rupture, blocking blood vessels and leading to heart attacks or strokes.1 LP(a) also promotes inflammation, which can increase the likelihood that coronary artery plaques will rupture.
But few if any of us heart patients will be routinely tested for LP(a) – even though a high levels of LP(a) are known to cause up to four times greater risk of heart disease.
According to the CDC, LP(a) is seen in people of all races and ethnicities, but appears to be more common among Black people.2 Many with high LP(a) experience no symptoms. However, your doctor may suspect that you have high LP(a) if you have any of the following risk factors:
- Poor circulation in your legs (called peripheral arterial disease)
- Heart attack, stroke or coronary artery disease before age 55 in men or age 65 in women without known risk factors, such as high LDL cholesterol, smoking, high blood pressure, diabetes, a sedentary lifestyle or obesity
- Female family members who had a heart attack or stroke before age 65
- Male family members who had a heart attack or stroke before age 55
- Familial hypercholesterolemia
- Certain types of aortic stenosis
How is LP(a) treated?
LP(a) advocates recommend that every one of us should routinely get at least one lab test for LP(a).
There are few accepted treatments for LP(a) other than reducing risk factors that we know increase our chances of heart disease (e.g. smoking, obesity, high blood pressure, sedentary lifestyle, high LDL cholesterol, etc.)
Lipoprotein apheresis. This is a weekly or bi-weekly clinic treatment (similar to kidney dialysis). Apheresis treatments can help to reduce LP(a) levels by up to 75%. But this treatment is not available in every hospital, and is not recommended for certain patients.
Learn more about potential drug treatments from the LP(a) Care Foundation, a research charity founded by Dr. Christian Schrock, who believes that statins are not effective in lowering LP(a), and that other cholesterol drugs called PCSK-9 inhibitors (e.g. Praluent or Repatha) may show promise.
But before any treatment can be decided, you need a diagnosis.
The first clue that you might unknowingly carry this gene is your own family history. If you’ve had a close relative (parent, grandparent, sibling or child) who has experienced heart disease at an unusually young age (under 55 in men, under 65 in women), request a specific LP(a) blood test from your doctor.
And as Katherine Wilemon observed:
“I saw that this problem came long before people got sick, therefore we need to be engaging healthcare professionals as much as we need to be engaging patients.”
♥
1. Reyes-Soffer G, Ginsberg HN, Berglund L, Duell PB, Heffron SP, Kamstrup PR, et al. “Lipoprotein(a): A Genetically Determined, Causal, and Prevalent Risk Factor for Atherosclerotic Cardiovascular Disease: A Scientific Statement From the American Heart Association.” Arterioscler Thromb Vasc Biol 2022; 42(1):e48-e60.
2. Patel AP, Wang M, Pirruccello JP, Ellinor PT, Ng K, Kathiresan S, Khera AV. “Lp(a) (Lipoprotein[a]) Concentrations and Incident Atherosclerotic Cardiovascular Disease.” Arteriosclerosis, Thrombosis, and Vascular Biology 2021;41:465–474.
* Photo: Family Heart Foundation
NOTE FROM CAROLYN: I wrote more about common (and uncommon) cardiac risk factors in my book, “A Woman’s Guide to Living with Heart Disease”. You can ask for it at your local bookshop, or order it online (paperback, hardcover or e-book) at Amazon, or order it directly from my publisher, Johns Hopkins University Press (use their code HTWN to save 30% off the list price).
For more information on LP(a) see:
– “What is High Lipoprotein(a)?” – one-hour webinar from Heart UK
– Family Heart Foundation – a non-profit that supports research and education on LP(a) and Familial Hypercholesterolemia (FH). This organization was founded by Katherine Wilemon in 2011 after her heart attack at age 39. The Foundation has a national registry of almost 6,500 FH patients so far in 40 centres around the U.S., a useful Find a Specialist page, plus a Care Navigation Center to help newly diagnosed patients.
– LP(a) Care Foundation was founded by Dr. Christian Shrock after his own healthy, athletic 41-year old son had a near-fatal heart attack in 2016 (all three of his coronary arteries were blocked despite his “normal” cholesterol test results) – finally correctly diagnosed as LP(a). His Dad’s Foundation raises awareness, encourages screening tests, and raises funds to support LP(a) research. Watch this 7:5 minute video
Heart Sisters 
Due to this post, I had the test done. My Doctor (Cardiologist) said he’s never requested one be done nor did he know of many Doctors who have.
I said I was aware that few Doctors requested them. So he found out that LifeLabs does offer the test and ordered the bloodwork to be done. Turns out mine is at 203. High according to what I’m reading. However I’m not sure now what to do with this information. Doing some research it would appear that it cannot be changed by diet and exercise. Medication (not that I want to take any more meds because often the side effects outweigh the benefits) seems to be still in the trial stages.
I’m wondering if this is why Doctors don’t bother ordering the tests, because maybe they don’t know what to do with the patient should it turn out they have this.
Although I was hoping for a different result, the fact that my father died of a heart attack at 48 and my mother six months later but at the age of 53, it would be very likely I had this gene. I had my widow maker at the age of 62. I have low blood pressure and I do not have high cholesterol so I guess I can thank the gene for my heart attack.
But it sounds like there really wasn’t anything I could have done to prevent it. Please correct me if I’m wrong.
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Hi Donna – thanks for this update. I suspect you are correct about two things:
1. LP(a) is a genetic condition so NO you couldn’t have prevented it, and
2. doctors will not be in a hurry to order a test for LP(a) if very few have any expertise or treatment options to offer patients who test positive for it.
The fact that your cardiologist has never ordered this test before you asked for it is very telling – given that LifeLabs now offers these tests. You don’t need another test – you need a cardiologist who knows about your diagnosis.
This disinterest (born of lack of experience, of course) reminds me of what I’ve observed with coronary microvascular disease (MVD), a diagnosis I’ve shared for almost 14 years (aside from the large coronary artery blockage that caused my heart attack). I’ve heard from a number of readers who – after they’d read about MVD here on my site – had asked their own doctors if it was possible their severe cardiac symptoms could actually be from MVD. One doctor responded to his patient’s question by simply saying: “I don’t believe in microvascular disease!” – as if they’d been discussing the frickety-fracking Tooth Fairy! I’m happy to say that there are now many published studies that not only confirm that MVD is “real” – but that non-obstructive coronary artery disorders are serious cardiac conditions. See also: Is Coronary Microvascular Disease Serious? Is the Pope Catholic?”
And just like MVD, hope for the future of educating the medical profession about LP(a) appears to be coming from patients and their patient advocacy organizations more than from the medical profession. A good example is the Family Heart Foundation – started by LP(a) patient Katherine Wilemon, as mentioned in this article.
This patient-initiated Foundation has a ‘Find A Specialist’ feature for people in your shoes (with positive LP(a) test results – but now what?) Most lipid specialists listed are in the U.S. – but I did find three in Western Canada you might want to check out: one at St. Paul’s Hospital in Vancouver, B.C. led by Dr. Liam Brunham, email: liam (dot) brunham (at) ubc (dot) ca (The second specialist is Dr. Michael Khoury at Stollery Children’s Hospital in Edmonton, and the third is Dr. Sabyasachi Bose at the University of Saskatoon).
I don’t know if any of these will help, but it might be your best shot (until all cardiologists are up to speed on this diagnosis) – especially if your own cardiologist would agree to consult with one of these or other experts.
Good luck to you, Donna . . . ♥
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Thanks, Carolyn — terrific article. I believe that this is our family “curse”, so it raised some questions for me and I have raised those questions with my cardiologist!
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Hi Lesley! So nice to hear from you.
I don’t think doctors call this a “family curse” – although it might seem so.
When one parent has a dominant gene like LP(a), each child will have a 50% chance of being born with the same gene. As the Family Heart Foundation explains, if a person has LP(a), about half of first-degree relatives (parents, siblings, children) will also have this marker too; as they say: “You never find a person with high LP(a) – you find a family!” – which is why they recommend what’s called cascade family screening.
Hope you’re doing well in beautiful Australia!
Take care, stay safe. . . ♥
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My physician picked up on this 15 years ago when I had my heart attack. My father also had an early heart attack.
When I have talked to some people about the heart attack, a number of them go down the “heart as metaphor” path, and say (wink wink) Have you ever considered how this might be a reflection of your heart in relationships? – a kind of unasked-for pop psychology at its worst.
I suppose it is training for me in how not to be reactive to idiots.
If this were true, there are some prominent politicians who should have been dead a long time ago…
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Hello Dr. Steve – I too have observed how often some people (despite little or no experience of actually living with heart disease) offer those (wink wink) comments about the likely cause of our own diagnosis. Pop psychologists are everywhere!
And as my lovely daughter-in-law Paula frequently reminds me: “The world is filled with idiots!” – so we all need some practice in responding kindly to them. 🙂
I’m guessing that your stone-building season might be over for the Alaska winter – so I hope you’re enjoying your indoor pursuits.
Take care, and be safe. . .
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Thank you for this information! I will be sure to discuss with my new Cardiologist to find out what he knows and where he stands on investigating this in someone my age, 73.
I have always had cholesterol issues regardless of diet and exercise. I have been on at least 4 different statins, every one of them causing side effects – which is another area doctors dismiss.
My local cardiologist tried me off statins for 2 weeks, with no change in muscle weakness; however my HCM cardiologist at Mayo Clinic told me to go off statins for a total of 6 weeks in order to evaluate accurately the side effects.
Lo and behold, I could walk 3 flights of stairs with no problem after 6 weeks off of statins.
So I am permanently off statins and on a a PCSK9 inhibitor, Repatha, ($134.00 per month co-pay) and my LDL is down to 70.
So many pieces to the puzzle, so much to learn.
Thanks for all of your wisdom.
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Hello Jill – interesting experiment you’ve just experienced: two weeks off statins shows no difference in painful side effects, while six weeks off shows reduced side effects. Hmmmm….
I too have wondered why the doctors who seemed most dismissive when heart patients told them about debilitating statin side effects suddenly embraced new non-statin drugs marketed specifically “for those who cannot tolerate statins”.
Glad your (expensive!) PCSK-9 drugs are at least partially covered by insurance!
Take care, stay safe . . . ♥
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Hi Carolyn,
I’ve been aware of that risk factor since I had my AMI. I was tested for the marker even though no family member had a a heart attack at a young age or at all. Mom had a mild HA before 50 but it was brought on from obesity, but only that one and heart is doing good and she’s 94 years old and still kicking.
The good thing is I don’t have the cardiac marker.
Take care,
Robin
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Hello Robin – apparently, only about 20% of people have elevated LP(a) levels, which means 80% of us don’t – which is indeed a good thing.
Take care. . . ♥
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My lipoprotein(a) was 188 in 2009. Dr. Sharonne Hayes at the Mayo Clinic informed me of this, it was hereditary, and statin drugs didn’t affect it.
When I returned to my local cardiologist, he downplayed it.
I am still feeling angry and over-reactive after reading this. I don’t know when the treatment for this became available, but it makes me feel that my heart disease and recent treatment I received prior to experiencing my 3rd heart attack and CABGx3 were treated in an ineffective way.
Pushed medication, which didn’t work and by the time they determined bypass, I’d had a heart attack, now heart failure.
Obviously, at this point, I have to accept the diagnosis but I have to wonder if I’d had other treatment sooner, my outcome may be different.
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Hello Sandy – I feel sick just reading about what you’ve gone through.
It is unbelievable to me that any physician would “downplay” an opinion from a cardiologist like Dr. Sharonne Hayes (founder of the Mayo Women’s Heart Clinic). That smells like a petty professional turf war (local guy resents contrary view by world expert). It’s especially appalling given your 188 LP(a) test result – certainly within that 150-300 danger zone. (Reminds me of one of my readers who was finally diagnosed correctly with coronary microvascular disease by a specialist at a major heart institute. When her own cardiologist back home read the specialist’s report, he told her: “I don’t believe in coronary microvascular disease!”)
In the world of cardiology, LP(a) is still a relatively new condition (it was only in the 1960s when this tiny fat particle was first identified in a Norwegian lab). My understanding is that, aside from apheresis and (possibly) the cholesterol drug PCSK-9, many treatments are still in early research stages. One example is an Olpasiran study (randomized, double-blind, placebo-controlled) on 280 patients living with LP(a); it was reported last month in the American Heart Journal; Olpasiran is a small interfering-RNA molecule that may reduce LP(a) production.
But when docs lack effective treatments, they tend to fall back on what they’ve always generally recommended for heart patients (take statins, eat healthy, exercise, stop smoking, etc.) A number of studies suggest, for example, that LP(a) numbers actually increase among distance runners and weight-lifters. It seems there’s so much we don’t yet know about this condition.
Please take care, stay safe. . . ♥
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Finally someone besides me talking about LP(a) — thank you!
I found out incidentally when a cardiologist tested for it, but it was never mentioned at any of my appointments. The very same doc put me on the statins and I saw only modest change to LDL level. I’ve since changed providers and have been on Praluent for 6 months. My LDL dropped to 40!
I felt like I was feeling my way through the dark, but little by little discovering info. I’m asked over and over about what I’m doing to improve my diet, so entrenched in the public mind that if you just go vegan all will be fine.
Not many people believe me when I say my situation isn’t much changed by diet/exercise although I still watch both. In a way I’m relieved of the guilt of not being perfect.
Thanks again, so appreciate your work and how it has helped me find my way.
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Hi Tomi – it’s maddening when heart patients believe they must “feel their way in the dark” about a serious medical condition. Doctors had your test result – but never mentioned it during your follow-up visits? That’s just incomprehensible.
When I was doing my Science & Leadership patient advocacy training at Mayo, we had 45 women in our class of 2008 – all women living with heart disease. Our class also included several vegans, a couple of triathletes, a family physician – all of whom were living what they believed was that “perfect” cardio-protective lifestyle. Genetic diseases don’t care if you’re a vegan.
Meanwhile, I hope your immediate family members have also been tested for LP(a).
Take care, and stay safe out there. . . ♥
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It’s not just that doctors know little about this particular form of heart disease – or several other forms of heart disease such as coronary microvascular disease.
The problem is that they are so dismissive of even the most obvious symptoms in women. Perhaps especially in younger women.
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Hi Sandra – it’s very discouraging, isn’t it?
I’d like to think that this gender gap in medicine (not just cardiology) is shrinking, but honestly, stories like Katherine’s just keep coming. (If you read Maya Dusenbery’s book “Doing Harm”, you’ll become even more discouraged by that reality in medicine).
My favourite example of this gap in cardiology (which I’ve written about previously – probably a few times!) comes from a woman in one of my Heart-Smart Women audiences who was in the Emergency Department, where she overheard a conversation beyond the curtain separating her bed from the one next to hers. The Emergency doc told the (male) patient in that bed:
“All of your diagnostic tests have come back normal, but we’re going to admit you for observation just to make sure it isn’t your heart!”
And THAT is the problem right there. Yet another man with symptoms but “normal” test results is admitted, while countless women like Katherine Wilemon are misdiagnosed and sent home.
Can you imagine if the tables were turned and it was MEN complaining that women’s cardiac symptoms are taken seriously, but their own symptoms are the ones being ignored? That would simply never happen.
Take care, and stay safe. . . ♥
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I totally agree.
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