Anyone else out there with extremely high lipoprotein (a)?

Me too, they found that I have a very high Lp(a): 390 nmol/L. I’m 52 years old, and an ultrasound showed a small 2 mm plaque in my carotid artery. However, my heart calcium score is 0.

When I saw the number, I was extremely scared. I feel vulnerable, and sometimes I think the worst, especially knowing that I already have a plaque. I keep asking myself what I can do to protect myself and whether I’m doing enough.

I’m trying to focus on what I can control: keeping my LDL as low as possible, having regular check-ups, and not ignoring prevention. But emotionally, it’s not easy.

Hello again Sue!
I very much appreciate you writing and telling me your story. Calms my nerves a little bit. I've been so scared with what I've been reading, I even sent my kids and husband directions on what to do if I seem to be having a stroke or heart attack to insure quick care. Knowing you seem to have the same story and so far, so good, helps. My parents both lived in to their late 80"s but both did have cardiac issues in the end. I may reach out again down the road once I do see the cardiologist. Be kind of interesting to see the difference in treatment with the 4 year difference. Thanks again for the comfort you have given me. Fingers crossed 🤞

@christinecaron hi Christine, I guess I am very fortunate because I am overweight, built like my mother, and have been for a long time. I am relatively sedentary the fact that I have a zero calcium score and my most recent cardiac testing, which was very thorough showed nothing concerning, and I do not take a statin makes me feel that there is way more to the story than just a number. I was not eligible for any clinical trials when I first discovered my high LP little A because I had not had any coronary events. I was told that these drugs would be available around 2025. I don’t know if any are available yet, but I assume they will be extremely costly at least until they can come up with a generic. If you’re concerned and comfortable, I would take the statin if offered. I am just on a lot of other medication’s and have a lot of muscle pain so I went off the statin. Unfortunately, my children have also inherited the elevated LP little A. Because mine was so high the doctor told me that it was likely I got the gene that makes LP little A from both my parents. My mom lived to be 95 with no Cardiac events, and my dad did have a heart attack at around 75. He lived another seven years and did not die from a Cardiac event. My brother, who also has very elevated LP little A had a heart attack at 63. He was not taking his blood pressure medication at the time, but he has been fine for the last 12 years. No further events. Feel free to respond with any other questions.

@csage1010
Thank you so much for replying. I am a 61 year old female. Also no calcium build up. Had a 0 score. Hdl has always been very high, now 90. Ldl is 99. I'm so freaked out. Haven't even heard back from a cardiologist. Blood pressure is good and I'm pretry fit. Haven't had any cardiac testing yet, but, believe it will be like you, fine. In the mean time I see info on clinical trials. Did you consider any of them? Any advise?

@christinecaron hi Christine, so here we are four years later and I have had extensive cardiac work ups
and they are still not seeing anything concerning. I am 62 years old. I think there must be more to it than just this high number because my calcium score was zero when I first found out about my Lp (a). I haven’t even been taking a statin for two years and my recent Cardiac work up was great. I had a stress test, an echocardiogram, and an EKG. My lipids are still high, but so far no other symptoms. I panicked so much at first, and I want you to know that there is a lot more to this than just the number.

@csage1010
I just got my LPa test and was a 414. I'm terrified. Your post was in 2022. Do you have any insight for me??

@elle7 Thanks!

Hi, @amylynch and welcome to Connect. I am glad you are here to find more people “like you”.

I deal with health problems related to genetics as well so I understand how you are feeling. Talking to a genetic counselor was helpful. I felt better once I understood what was in my control to help. My personality is learn all I can, do the best with what is in my control and let the rest go. Some days easier said than done. You can do this!

I assume the 61 score you state is your LP(a) level, and you mention a gene. What is the gene, and what prompted testing? What is next for you, will you be visiting with a specialist?

I just found out that I have the same gene. My scored 61 and I’m scared my dad died of arterial sclerosis. I’m 70 pounds overweight if not 80. And confused and scared.

@bitsygirl hey just realized….he used a company called cardiorisk.com and you can go to their website to find it near you. My doctor at the Cure center uses them. Lifeline screening does CIMT but not real analysis like cardiorisk. just low medium and high level for screening.