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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 d