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

Hi AGB. Happy 4th of July. I asked the cardiologist for the Lipo A but not B. They don’t order any of these tests unless patients ask and the majority of people don’t have a clue what tests to ask for. I am a RN and this is why I asked. There are no drugs at this moment to treat Lipo A there are 4 right now in trials 2 of them on Phase 3. I read from Cleveland Clinic cardiologists that they have found Statins increase the Lipoprotein A much more in addition that patients taking them can develop Diabetes. That is the issue with Statins. My lipid levels have come down with the Mediterranean diet, exercise since Jan 2024. It is genetic and there is nothing I can do just keeping up what I’ve been doing.
Stay safe and healthy and enjoy the 4th of July.

AGB. Good luck to you too. I can’t imagine how many millions of people are unaware of these tests because the physicians don’t tell. 😳

Mine is 439 and my PC isn't concerned at all. I have a lot of specialists, and I've mentioned it to several of them and they either say nothing or give me a "deer in the headlights look". My PC tried to explain why she is unconcerned, but after mulling it over, I still wasn't reassured. I'm thinking I will contact my heart Dr. and ask him to explain it. I hope we both get answers soon. I wouldn't worry too much over the weekend as we have probably been living with this for some time, but we should both seek information soon. From the research I've done, there isn't much we can do to resolve it ourselves as it doesn't respond to diet or cholesterol meds. Hang in there and don't give up!

Studies - lots of them! I don't know the answer - not medical professional - but good stuff to review.

Here's a large European meta analysis with a conclusion, "Statin therapy does not lead to clinically important differences in Lp(a) compared to placebo in patients at risk for CVD. Our findings suggest that in these patients, statin therapy will not change Lp(a)-associated CVD risk."
https://academic.oup.com/eurjpc/article/29/5/779/6439180

Do other family members suffer from cardiovascular disease in your family? Mine experienced heart attacks and strokes in their 50s and died in their 60s so when the LP little test came along, my doctor agreed to do it I was freaked out that my score was 66! They ran a lot of other tests and I found out that three of my arteries are clear and one is 1/3 blocked. I am 67. I’ve always watched because of my father. I’ve exercised and eaten correctly when I became postmenopausal my cholesterol became stubborn. I can’t take statins , but I asked to be started on LEVQIO and it dropped my cholesterol 70 points in three months. My LPa is still sitting at about the same number. I had a fight for the LEVQIO but it was well worth it. There’s zero side effects and you only go a couple times a year for the injection. I got it because I was lactose and gluten intolerant. I highly recommend it if you can get it, in the meantime, there doesn’t seem to be too much to do. I still watch my diet and exercise. Blood test oh and one other thing I take L-Carnitine Regularly as a supplement. Supposedly, I have a deficiency and the acetyl Lcarotene crosses the blood brain barrier. I hope it keeps those plaque deposits from forming in my brain as well! I recommended to the rest of my cousins that they get tested as well!

Hi Sue, RELAX! (I hope that suggestion helps!) it could be an aberration. And there’s a lot to know and a lot for the specialist to learn. I had a high number of 66 and I freaked out but because of the family history of dad and cousins all having heart attacks in their 50s and strokes my doctors cooperated with necessary assessments of my vascular system. Meaning they looked at the walls of my heart arteries for vascular deposits. I had three clear heart arteries and one artery was 1/3 blocked. I am 67. I’ve watched my diet and exercised my whole life because my dad had his first heart attack at 58. I pushed to go on the LEVQIO because I can’t take statins and I’m gluten and lactose intolerant. It’s a twice a year injection and zero side effects. As far as I can tell it dropped my cholesterol 70 points in the first testing period of three months I told all my relations that they had to get tested for the familial CAD, I think some thought I was crazy. Oh well to each his own just because you have a high number on some test does not mean you have the disease and if you have other things that substantiate that you don’t that’s what your doctors are probably look looking at , the LPL a seems to indicate one carries around a familial disease, but I don’t see that it means a direct correlation to manifesting CAD. I hope that helps. Good luck!

I have high Lp(a)…family history of premature CAD that I only assumed affected the men in my family. Wrong assumption. I had a NSTEMI at 57 and 2 stents. I am on Repatha, Nexletol and participating in the HORIZON clinical trial for Pelacarsen. After nearly 5 years, I still have angina, but my last heart cath showed that there is some plaque regression.

Having high Lp(a) and LDL felt like having a gun pointing at my head. All is well, but the uncertainty never goes away. I still have four 80-90% occluded septal and diagonal branches of the LAD. I have been told multiple times there is no treatment for these blockages except meds. So, radical acceptance is key, heart healthy diet that you enjoy, exercise and loving life helps.

There are hundreds of research papers out there…I have read most of them. Dr. Tsimikas at UCSD is a great source of information. He gives Niacin to his high risk patients when there is nothing else - it has some risks for the liver so don’t do it on your own. Baby aspirin is helpful and so is lowering LDL. But patience…the results of the trial for Pelacarsen are due to be out next year…so may be available soon. There are several others in trial as well.

I feel your unease…but don’t give up, there are solutions on their way. Life is good. 😊

Yes my mother's family all have heart issues at young age. She had a 4 way bypass at 48 and my father had a 5 way bypass at.59. The surgeon that did his surgery said "those weren't arteries, those were bones". He also had hardening of the arteries to the brain, as did his father. I have lost nearly 100 pounds and keeping it off. Excersise regularly and eat a healthy diet. Trying my best not to follow in my parents footsteps!

I am sorry for all of your struggles. I am glad you are Ucsd. I think it’s a great place for innovative medicine when you need it my dad had the worst heart in history and swam three times a week. Watched his diet and at 58 he started having heart attack and had three valves that were blocked at 72. He had four valves that were blocked and it’s 80. He had three each time he was told it was the last surgery, he passed away at 80 almost 88 and he went for a lot of stents and the three bypass surgeries. He took statins and lowered his cholesterol to 169 from 396 and he stayed on Staten very well for 25 years vitamin D we’re all vitamin D , I’ve taken this very seriously and by the grace of God we go right? And we try and help others when we can. Reason that I’m posting primarily is because I hate it when I hear that men are being tested and women aren’t. I read a book on how neglected women are in research and testing and it really infuriated me and so women should use the testing that’s done on medicine in medicine for their own purposes And we need to advocate whatever we have left to make sure women aren’t ignored. I’m taking Tim for my bones and the abdominal swelling is notated in men. Do you think men care women care and all the women are commenting that they have abdominal swelling and there’s no recourse for them. There’s no acknowledgment by the pharmacy and by the medical industry , it’s crazy anyway good luck. It sounds like you have it all handled well!

I came back to say I didn’t realize this was an old comment and also that I should not have said “relax” because it sounds insensitive. I didn’t mean it that way I meant to be supportive. Sometimes we just need some support in order to help relax not that you should relax Because you shouldn’t be worried in the first place —- as you’re worries are legitimate!