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I’ve known since I was a young woman that my siblings and I did not win the genetic lottery when it comes to health, particularly regarding heart disease. My grandfathers and my father all died of heart attacks in their 60s. My dad was the youngest, only 61 when he passed. My brother, now 54, had a quadruple bypass when he was just 47.
Only recently did I become aware that a “bad family history” actually had a specific indicator, Lipoprotein (a), or Lp(a). It’s a form of bad cholesterol that is genetically determined and not linked to lifestyle, and it increases your risk for heart attacks and strokes. I was tested recently for it, and my number is bad. Really bad. My brother and sister also have bad Lp(a) numbers. We assume our dad did, too, but back in 2000 when he died, they weren’t testing for that.
Another recent discovery is that breast arterial calcifications (BACs), which can show up on mammograms, is a warning sign of plaque in the arteries. My primary care doctor alerted me in April that BACs were evident in my recent mammogram. I asked for the lab test for the Lp(a), a coronary artery calcium scan (CAC), and a referral to a cardiologist, whom I saw today.
So…my CAC score isn’t good, and neither is my Lp(a) number. Oddly, though, that’s partly “good” news. The gold standard treatment for high Lp(a) is a biweekly injectable called Repatha. My brother’s been on it since February, and his Lp(a) score and LDL-C are both way down. He also takes a statin, and my sister and I both started statins within the last couple of months.
My cardiologist explained to me that my CAC score will qualify me for insurance coverage for Repatha, which can be hard to get. She wants me to start it ASAP; it will not only lower the cholesterol numbers but also stabilize the plaque and even cause to reverse (somewhat).
In a very real sense, I lucked out. I have all the risk factors (including Hashimoto’s thyroiditis) but have not yet had a cardiovascular event or even any symptoms. The cardiologist asked me detailed questions about my exercise regimen, my heart rate during cardio workouts, and how I felt. The real life evidence suggests I’m healthy. The clinical evidence says “not so fast.” Because of the clinical evidence, I get to start taking the best medication available, and I’ll be in line as new ones get approved.
So it’s funny. I think of myself as a “healthy” person. Turns out I’m actually a person with cardiovascular disease. But in a very linear sense, that may well keep me healthy(ier) for longer.
Hello, I am a recently retired primary care doctor. I spent the last 15 years of my career focused on preventive health and health maintenance. My comments and unsolicited advice:
Onward!
Thanks for this. In my case, my high CAC officially makes me a person with cardiovascular disease, and the reason I described myself as “healthy” is that, thankfully, at 66 I’ve not had any adverse cardiac events or even symptoms, and I do pretty robust cardio 4-5 days a week (heart zones 3-4 most days) with no ill effects. My Lp(a) number alone probably wouldn’t have gotten me approved for Repatha in 24 hours. As you note, Lp(a) is a risk factor, not disease itself.
If I could go back 10-15 years, I’d have gotten myself under the care of a cardiologist sooner and probably would have been on a statin years ago, which might have prevented at least some of the calcification. But I felt fine, never had bad “regular” LDL numbers, and didn’t know from Lp(a). So other than being aware of bad family history, I didn’t have enough information as a layperson to be more proactive. So oh, well—onward, as you say!
One in five people are hyper absorbers as opposed to hyper synthesizers. I am one of those 20%. After years of dealing with statins I tried Ezetimibe, which is for hyper absorbers. My LDL/total non HDL/triglycerides/APOb all fell dramatically.I am constantly amazed at the number of folks who don’t ask their docs to at least try this safe,cheap and often successful drug
Wow, I’ve never even heard of that, but pretty much all of this is new to me. I’m thinking that since just 7 weeks on a statin got my LDL and ApoB into the 60s (and probably dropping), I’m in the 80%.
Dana, what an interesting perspective on what it means to be “healthy.” In some ways, knowledge really is power. You can’t change the genetics you inherited, but knowing what you’re dealing with gives you the opportunity to act before those risks become something more serious. There’s something wonderfully ironic about discovering you have cardiovascular disease potentially being the very thing that helps you remain healthy for many years to come. Wishing you many of those healthy years ahead.
I hope so, Andrew! I was just living my life, thinking I was pretty healthy/lucky for my age when one piece of data (calcification on my annual mammogram) led to follow-up testing, meeting with a cardiologist, and starting gold-standard meds (as of today) that I wouldn’t have qualified for without those pieces of negative evidence.
Honestly, I’m still rather reeling from all of it and struggling with anxiety. But I also feel grateful and hopeful that we caught it in time.🙏
My PCP referred my to a lipidologist 15 years ago and Ive known about my very high Lp(a) since then. I lowered my particle count over the years with Niacin Extended Release and further lowered it in the last couple of years with Repatha which also lowered my LDL along with a statin and Zetia. Im now on a GLP-1 also shows signs of impacting Lp(a) and other blood markers in additional to blood pressure. In consultation with my doc, I also take a baby aspirin to manage the clotting risk from Lp(a). My blood markers (including ApoB) are in good shape lowering my overall risk of an event which is the current recommended strategy from lipidologists. I do have a family history als and a moderately high CAC score. There are other effective ways to reduce to Lp(a), namely apheresis. There could be many reasons why the Horizon study failed to reach endpoint according to lipidologists and more information will be learnt when the full data set is published in November. Amongst others, it could be study design, the patient population, the fact that earlier in life intervention may be indicated rather than later in life. It also could be a correlated risk factor, not a causal factor in events-there is a lot to learn. For anyone interested in getting support or learning there is a really good outfit called the Family Heart Foundation which has arms focused on both Familial Hypercholesterolemia and High Lp(a). They have excellent care navigators that point you in the right direction for testing, referrals and general advice. Im currently being screened to join the Ocean-a pre event clinical trial for olpirisan, Amgen’s Lp(a) lowering candidate. Everyone should get tested once in a lifetime for Lp(a) as recommended by the American Heart Association.
Thanks for sharing the Family Heart Foundation. My brother sees a lipidologist at UCSF, and she recommended the site too (for him & his two sisters). I’ve looked around it a bit, and it has a lot of good resources.
As of this week, my regimen is Repatha (I took the first shot on Thursday), a statin (the cardiologist cut it in half because of the muscle aches I have, and the Repatha will fill in the gap), and a baby aspirin.
We also discussed a GLP-1, and she said that my CAC results will qualify me for it under the new Medicare guidelines. She wants me to get it from my PCP, so I’ve reached out to him about it. I told her that we’re taking a three-week trip in October and that I’d prefer to start the GLP-1 on November 1, and she seemed fine with that. I have about 20-25 pounds to lose, but the doctor seemed only mildly interested in that part. She agreed that the GLP-1, along with everything else, will address my overall risk profile. I have Hashimoto’s, an autoimmune thyroid disorder that causes inflammation and increases risk for cardiac disease and events.
Sounds like you and your docs have been proactive for a while and that you’re doing well. That’s encouraging for me to hear right now, so thanks for sharing.
That’s good news about GLP-1 lowering Lp(a). Research shows that GLP-1 also reduces joint inflammation independent of weight loss. Although I am normal weight , I was able to convince my doctor to let me begin trying it in July as I am on the maximum dose of Celebrex for arthritis without much relief.( I exercise daily which helps a bit ) The GLP 1 has indeed helped and I have reduced my dose of Celebrex. I’m hoping I can stop or just use occassionally.
It’s pretty amazing all the things GLP-1s can (or potentially can) address. I listen to Kim & Penn Holderness’s Laugh Lines podcast. Both of his parents died with Alzheimer’s, along with many other relatives. Penn tested positive for a double dose of the genetic marker for Alzheimer’s. He’s in his early 50s, thin, fit, and healthy, but he’s in a clinical trial that among other things includes a GLP-1 and a statin. So far his various markers are encouraging.
I’m glad it’s helping you with the arthritis. That’s great!
I assume you refer to APOE4 as the marker for Alzheimer’s. There are actual blood markers for it such as beta amyloid 42 & 40, p-tau217, neurofilament light chain (NFL), and glial fibrillary acid protein (GFAP). Well worth the cost with insurance.
Learned recently there is a downside to statins: they can accelerate calcification of soft plaques. Because of that, cardiologists often stop using a CT cardiac calcium score to assess risk once regular statin use starts.
I just came across this info, too—along the lines of “don’t freak out if you do another one and it gets a bit worse.” I’m guessing my cardiologist feels she knows what she needs to know already, but as she pointed out, my bad CAC score immediately moved to the front of the line for insurance coverage for Repatha and should do the same for a GLP-1.
Here is another health tip. One of my sister in laws had a blood clot and they tested her for something called the Leiden factor which makes you more susceptible to blood clots. More than half of her siblings have it.
Yikes!
I’ve had both CAC tests and a carotid ultrasound, inexpensive even without insurance. The latter may be a better indicator of cardiovascular health. And I’ve gotten free Lp(a) tests since LabCorp doesn’t charge me for tests insurance won’t cover.
I have always said that once you reach your 60s you should make an appointment with a cardiologist.
Yep. My husband’s doctor told him that “everyone your age should be on a statin” (we’re 66). I don’t know about that, but I get the drift.
I’ve been on a statin (Lipotor) since I was 50, which I credit to a very good family physician. I am fortunate that the initial dose has kept my cholesterol levels normal for the 28 years that I have been taking it.
Medicare covers abdominal aortic aneurysm ultrasound screening for people with a family history of strokes and other related conditions that I would highly recommend. The results include an assessment of the amount of plaque in your aorta which in my case was between low and moderate.
Thanks for the info!
Dana, Thanks for an important and timely post. Last night a sibling texted me that they had recently had an Lp(a) test and received a high score. I checked and I had the set done in June, 2024 and had a lower, but still high, score. We have heart disease in our family, but I always assumed it was due to smoking. I have never smoked. I have had 2 CACs – both zero, and had a recent cardia workup this spring and all was good. Still, I will use this information to talk to my cardiologist at my next visit. Thanks for sharing this with us.
Rick, my father & grandfathers were smokers, so I had a similar train of thought. I remember my doctor in the early 2000s telling me that the fact that they were smokers and I am not was “like not having family history.” And there’s something to that—smoking is a higher risk multiplier than an elevated Lp(a) level. But they know more now than they did 25 years ago.
After I got my Lp(a) score, I wrote to my daughters, who are in their 30s, and said they should get tested. They are young enough to actually have interventions before plaque develops.
That’s great that your CAC score is zero. Very reassuring. Sounds like you’re being proactive already.
Just to highlight a couple of things I’ve learned because they’re buried in other comments:
Re # 2 above. I retired in 2020. I received literally thousands of mammogram reports and have never heard of BAC, until now ! My friendly ChatGPT tells me that it only started to be routinely reported in 2024/2025.
Interesting. So I guess I shouldn’t be mad at my previous PCP for never mentioning it. Better late than never, I guess.
Dana, it’s a strange kind of irony — you can win and lose the genetic lottery at the same time. On one hand, you were born into one of the richest nations on earth; on the other, your genetics have handed you some real health challenges. I’m grateful that being born where you were means you have access to the best drugs and tests available, and I’m really glad to hear your numbers are responding well. Wishing you continued good health.
Thanks, Mark. I’ll add to your comment that I’m blessed to have great insurance, which makes lots of things possible. I do not take that for granted.
Doc, I’m so glad you’re reaping the benefits of another step forward in medical science.
I grew up knowing that no male on my dad’s side of the family had reached age 60. Heart attacks were universal. I started monitoring my cholesterol when I was 30. Right after I turned 40, my number jumped from a borderline 240 to a frightening 340.
That was 1997, right when the first statin drug, Lipitor, was introduced. I got it and my number has never been over 185 since.
Congratulations to you and your siblings on getting the next generation of “stayin’ alive” drugs. Live long and prosper.
Thanks, Mike. That’s a long time on Lipitor, and here you still are!
Dana, thanks for sharing this personal and important information. Stay well!
Thanks, Dan.
Following a healthy lifestyle is of course important, but not enough for some. Your recent experience illustrates how medical science is learning how to help those whose inherited genetic profile puts them at higher risk for various medical problems. I wish you the best and thank you for writing this informative article.
Thanks, Jack! It’s especially interesting how many things seem to be positively affected by GLP-1 drugs. My husband is going to pursue getting on one primarily because his mom had Alzheimer’s, and there’s growing evidence that reducing inflammation (which is what GLP-1s do) can fight it off. Same with keeping cholesterol low (he’s been on a statin for a couple of years).
If you have high cholesterol or any of the other risks, a CAC score determination is very helpful. It’s quite possible to have high cholesterol and a low or 0 CAC which is typically pretty low risk for heart disease.
Unfortunately, insurance often doesn’t cover the test. However, it is fairly inexpensive and avoiding the cost and side effects of statins if you can more than pays for the cost of the test.
Yes, I was pleased that my CAC scan was covered, but I was prepared to pay out of pocket if I had to. My sister’s insurance turned her down, but she’s not old enough for Medicare yet. Ironically, she was hospitalized after a car accident a few months ago, and the ER did a full body scan to check for internal injuries—and then notified her that she had calcification. Her cardiologist said that information is useable. So in a sense she got her CAC scan for “free.”
Dana, thanks for bringing this up to us. I have been on a statin for awhile and Spouse just started it. You mentioned the breast arterial calcifications in your recent mammogram. I have my eyes dilated every year for my vision issues, I wonder if they would show up there too? The high blood pressure did. Chris
beig “healthy” is very relative. Hopefully, this news won’t derail your retirement plans. The condition does seem to be one a fairly large number of people live with.
Thanks, Marilyn. I feel great. Hopefully nothing will be derailed, but you never know, especially at our age.
Thanks for this. I had my Lp(a) tested last year after listening to a People’s Pharmacy podcast on the subject, and mine is elevated. However, I didn’t think there was a drug, yet, specifically for high Lp(a), and read only yesterday that one promising candidate just failed its Phase 3 trial – it improved the numbers, but did not reduce cardiovascular disease. I just looked up Repatha, and it seems to be targeted at LDL, not Lp(a). I have asked my PCP about a CAC test without success, I may get it anyway as I may not need a referral, but remain unconvinced that aiming for LDL under 100 is necessary.
Repatha does lower Lp(a)—my brother’s been on it for just seven months and has gone from over 400 to 80. The bigger question is whether lowering Lp(a) actually prevents adverse cardiac events, and that’s the trial that just failed. At this point, the cardiologists’ best wisdom seems to be to drive the numbers as low as possible to mitigate the increased risk of an elevated Lp(a). They’re still working on it.
My LDL went from 117 (which is still considered normal) to 67 in just seven weeks on a statin this summer. But I’m having side effects from the statin (muscle aches), so the cardiologist is cutting my statin dose in half and adding the Repatha. We’ll see how it goes.
I’ve always figured heart disease was going to get me sooner or later. I’d just like to stay as healthy as possible for as long as possible.
You can minimized the effect of muscle aches or pain by taking CoQ10 300mg. supplement. It helps me so far.
Have you had your ApoB checked? That’s another important biomarker. It measures the number of cholesterol particles traveling through the blood stream. My Lp(a) was pretty low fortunately, but my LDL, CAC and ApoB were on the high side, which convinced me to take the statin. At age 72, I wish I had found out this stuff sooner! At least I’ve always had a pretty healthy diet and gets lots of exercise.
I had my ApoB checked three weeks ago along with my Lp(a). It’s 64, which is very good. I’m guessing having been on a statin since the end of June helped with that, along with lowering my LDL from 117 in June to 67 in August.
All the major pharma companies are currently active in Lp(a) research. Although Novartis’ drug failed, other candidates are being investigated.
The data released so far for the Novartis study is that it didn’t meet the the primary endpoint i.e. show a statistically significant difference (p<0.05) for between the two study groups. However there may have been a trend (p>0.05) that one group did better. Also the Novartis candidate reduces Lp(a) by 72%, and other drug candidates in development reduce it by 90%. More information is still required to get a better understanding of the link between Lp(a) and cardiovascular events.
Yeah, it’s a little confusing. A high number increases your risk factor, but lowering it doesn’t? I guess as they say, “more research is necessary.”
It succeeded in reducing the Lp(a) number, but reducing the number didn’t produce better outcomes.
Dr Lefty, thanks for the informative and timely description of the CAC test. I’m 68 and had a “mild” heart attack about 13 years ago. I am on several drugs including a statin. I have my semi annual check-up with my Cardiologist this month and will be sure to ask him about the CAC test ( I don’t remember having it before).
I am already a member of the WTC Health Program, certified for SkinCancer (squamous cell) and asthma. If I do test “high” for CAC I could possibly get certified for this Coronary condition and thus be covered for Repatha.
Thanks again for the information and I wish you good health for your conditions.
You might also want to ask for the advanced panel that includes Lp(a). Repatha lowers that. My brother’s Lp(a) score has gone from over 400 in 2019 when he had his bypass surgery to just 80–still high, but way better, plus his LDL-C is minuscule. I read recently that 1 in 5 people have a high LP(a) level but only about 11% are ever tested for it.
I’d think having a cardiac history would help you qualify, but yes, look into the CAC scan. It’s pretty quick and easy. Medicare + my Blue Shield supplement covered it for me.
Welcome to the Repatha Club. Even with commercial insurance, it can be pricey. Make sure you go to the Repatha website to get their copay card. When I started, it was $5/month (two doses), but now I believe it is $25. You will never have it so good. Once you get on Medicare (as I am for the past 2+ years), plan on paying the maximum annual $ permitted under the Plan D catastrophic limit ($2,100 this year). FDA has recently approved a pill form of the compound (by Merck), so we can all look forward to no more twice-a-month thigh jabs. Hope your LDL’s plummet as mine have, and keep doing what you can control…. a healthy lifestyle.
Thanks, Bill. I’m on Medicare with a supplement. The info in my chart says it will cost $40/month. My brother is doing very well on Repatha. My LDL-C was 67 three weeks ago after starting a statin at the end of June. The doc says she wants it under 50, but I’ll probably get there pretty quickly. Yeah, a pill would be better!
5
EDIT: It turned out to be $40 for a three-month supply, so a bit over $13/month. Not bad at all. I did the first injection yesterday and didn’t love it, but I can handle it once every two weeks. But I’d be happy if a pill alternative became available!
Glad to hear that your condition has been identified. Repatha is a wonderful drug for many with unexplained high cholesterol. It should give you confidence to move forward with your retirement plans, knowing that your Lp and LDL levels are under control.
Thanks, Jeff! I’m thankful to be starting it while I’m still feeling fine. My brother has been through a lot.
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