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

Posted by csage1010 (Sue) @csage1010, Feb 21, 2022

Hi! I just found out that I have an extremely high lipoprotein (a) of 515 nmol/L. I'm terrified; it's that high. I'm 58 years old and my total cholesterol is 212. My LDL is 141, and my HDL is just 40. My cholesterol/HDL ratio is 5.3. Of course it's a long weekend and I may not be able to reach my doctor tomorrow. I have watched a couple of informational sessions online from various doctors discussing elevated LP(a), but no one mentions anything close to how high mine is. Is there anyone else out there with severely elevated Lp(a)? Thanking you in advance. Sue M.

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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!

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Profile picture for farmgrrl57 @farmgrrl57

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!

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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!

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Profile picture for naiviv @naiviv

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.

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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

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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!

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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. 😳

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Profile picture for agb @agb

Hi Vivian: I've been on this cholesterol journey for more than 40 years now and from working with doctors, dieticians, and my own research, unless a person has an awful diet (doesn't seem the case for you), you can lower your cholesterol by about 10%. Everything after that is genetics or drugs. I started with total cholesterol in the 400's and LDL over 250. Statins and ezetimibe (Zetia) dropped that by more than half, but the LDL, at 105-109 was too high. The cardiologist added Repatha which has dropped all the numbers to an amazingly low level. Next blood draw is on Monday.

Did your MD order a lipoprotein B test? It's the carrier for LDL particles and the one my MD is most concerned about. I'm hopeful that the 3-drug regimen keeps working.

Good luck in your journey.

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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.

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Profile picture for naiviv @naiviv

Hello. What did you do to keep all those values so great. Are you taking statins? How about the Mediterranean diet? I have been doing this one for quite awhile. Vit C? I started it today even though I eat oranges every morning for a long time since I was a kid. I am 71 now. I exercise 1 hr daily. My values are normal but my Lipo A came out high 357 It was the first time I had this test. By the way I requested it because my cardiologist has never done it. I was just reading about lipids and the Lipo A popped up. I was reading that cardiologists don’t irder it because there is no drug out there for it only 4 are on trials. Anyway I think I am doing the right thing but unfortunately I got the gene. Stay safe and healthy. Happy 4th of July. Vivian N.

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Hi Vivian: I've been on this cholesterol journey for more than 40 years now and from working with doctors, dieticians, and my own research, unless a person has an awful diet (doesn't seem the case for you), you can lower your cholesterol by about 10%. Everything after that is genetics or drugs. I started with total cholesterol in the 400's and LDL over 250. Statins and ezetimibe (Zetia) dropped that by more than half, but the LDL, at 105-109 was too high. The cardiologist added Repatha which has dropped all the numbers to an amazingly low level. Next blood draw is on Monday.

Did your MD order a lipoprotein B test? It's the carrier for LDL particles and the one my MD is most concerned about. I'm hopeful that the 3-drug regimen keeps working.

Good luck in your journey.

REPLY
Profile picture for fortunateoldguy @fortunateoldguy

My Lp(a) is 220 nmol/L since the first time I had it measured in 2007. That’s high risk and is in the 95th percentile of the measured Lp(a) population. It causes me no issues.

I control what I can control. I keep my LDL < /= 70 mg/dL, triglycerides below 50, A1c between 4.8 and 5.2%, BMI at 25, blood pressure < 120/80. My last total coronary artery calcium score was only 135 which is within the 50th percentile of people matched for age, gender, and race/ethnicity. That’s decent for a 70 year old male with high Lp(a).

I was able to reduce my Lp(a) from 220 nmol/L to 44 nmol/L (80% reduction despite dogma that states only a 20-30% reduction can be expected) using 2,000 mg/day of extended release nicotinic acid. While it worked, it caused me an absolute myriad of health issues that fortunately were reversible after stopping Endur-Acin.

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Hello. What did you do to keep all those values so great. Are you taking statins? How about the Mediterranean diet? I have been doing this one for quite awhile. Vit C? I started it today even though I eat oranges every morning for a long time since I was a kid. I am 71 now. I exercise 1 hr daily. My values are normal but my Lipo A came out high 357 It was the first time I had this test. By the way I requested it because my cardiologist has never done it. I was just reading about lipids and the Lipo A popped up. I was reading that cardiologists don’t irder it because there is no drug out there for it only 4 are on trials. Anyway I think I am doing the right thing but unfortunately I got the gene. Stay safe and healthy. Happy 4th of July. Vivian N.

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Hi,
After trying for several years to manage my ever increasing LDL and Lipoprotein A, I had a blood test done that revealed that my situation was genetic and that I wouldn’t be able to manage it through lifestyle changes alone. It was good to know that !

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Hello Sue M. I had my blood drawn last week to check my lipids and for the first time the Lipoprotein A. My cholesterol level is at 218, LDL is 136, HDL is 56 and Triglycerides 130. The Lipoprotein A came out to 372. Too high since the Normal is < 75. Scary. My PCP told me the Lipids are going down which is great. The Lipoprotein A was ordered by my Cardiologist. I will see him this coming Friday. I have been doing the Mediterranean diet for months now and it seems is working, I also walk everyday for one hour, I don’t eat sweets, don’t drink and never have smoked. I have been reading a lot about Lipoprotein A and statins don’t help lower it. I heard about Vit C which I have been taking for a while before having the Lipoprotein A and Magnesium too. My mom had 4 bypasses when she was 77 and died at 91. My dad and mom never had high cholesterol or triglycerides which is so strange but both developed maturity onset diabetes at 85(dad) & 80(mom). Both were treated and well controlled. I found out that I have pre-diabetes (I’m 71) with normal glucose but A1C of 5.7 which is high but at the high normal. I love chocolate and I know it is my fault having that A1C high but I definitely eating chocolate or any kind of sweet. Anyway I don’t know what my cardiologist have to say but I confess I am nervous. I know it is genetic. Probably my brothers have it high too and don’t know it. I guess I will keep my diet very strict. I have lost 4 pounds so far, my target is 15 pounds. (170 before, now 166). According to what I have read cardiologists advice to lose between 2%-7% of your weight. I will post comments after my visit with my cardiologist. Stay healthy and safe. Hopefully we hear more people about this topic. The truth is that seldom cardiologists order Lipoprotein A to their patients, they need to ask but the issue is that there are zillions of people out there who don’t even know this test exists. That is sad. Hope you get better. Let’s keep in touch if you don’t mind. Thanks. Vivian N

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