New to the Lipoprotein Genetic Test

Posted by kramos67 @kramos67, 2 days ago

Hello All
This December I will be 5 years post heart attack. In Dec. 2020 I had a heart attack at age 53. While I was hospitalized I had an angiogram with two stents. Prior to the heart attack I use to take 1 blood pressure pill. Post heart attack I take 2 blood pressure, 1 + Cholesterol med, I antiplatelet (not any more), Aspirin, Cq10, Cholesterol absorption inhibitor and Potassium. Plus some vitamins. I must be very lucky because I don't have any side effects. I mean the Cholesterol meds do give me a bit of aches and pains but nothing to bad. In May 2025 my cardiologist sent me for a genetic test the Lipoprotein blood test. My initial results came back at 177.2 which obviously is high but I don't actually know level wise how bad that is. We know I must have inherited from my father who passed away at age 52 of a massive heart attack, that we do know. My cardiologist also set me up with a trial which is being done by Eli Lilly for Lipodisiran which will help reduce my chances of a more major cardiovascular problem. I'm excited for this trial and to my understanding this could reduce it by more than 75%. Is there anyone else out there with similar circumstances? Is there anyone else who has had this Lipoprotein test and results? I'd love to share more of my history and experiences with others, as I would appreciate feedback of those who may have the same experiences.

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How high that value is depends on the units of measurement. Two units are in common use, nmol/L and mg/dl. Based on that number, I'd guess it was in nmol/L? (If it's mg/dL it is a very high number.) Many guidelines say that Lp(a) concentrations of ≈125 nmol/L (≈50 mg/dL) or higher are considered elevated (“risk-enhancing”). Exactly what the implications are beyond that, I don't know. My number is 165-ish nmol/L. When they measured mine, they gave me a letter of explanation to send to immediate family on the chance they want to get checked. It's genetic. I looked around at participating in some trials, and my impression is that my number is a little low to participate in most studies on the effects of lp(a) lowering drugs on MACE. I guess that's good??? At any rate, good luck! Here a site that has some accessible information on lp(a) and familia hypercholesterolemia. https://familyheart.org

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Profile picture for bitsygirl @bitsygirl

How high that value is depends on the units of measurement. Two units are in common use, nmol/L and mg/dl. Based on that number, I'd guess it was in nmol/L? (If it's mg/dL it is a very high number.) Many guidelines say that Lp(a) concentrations of ≈125 nmol/L (≈50 mg/dL) or higher are considered elevated (“risk-enhancing”). Exactly what the implications are beyond that, I don't know. My number is 165-ish nmol/L. When they measured mine, they gave me a letter of explanation to send to immediate family on the chance they want to get checked. It's genetic. I looked around at participating in some trials, and my impression is that my number is a little low to participate in most studies on the effects of lp(a) lowering drugs on MACE. I guess that's good??? At any rate, good luck! Here a site that has some accessible information on lp(a) and familia hypercholesterolemia. https://familyheart.org

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@bitsygirl mine currently came back at 240 nmol/L and yes they told me to qualify to the trial I had to be above 170. I would imagine that your number is considered “low” but my initial test came back at 177.2 and tha was May 2025 and it went up within 6 months to 250. I hope yours continues to stay low. 🙏🏻

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@bitsygirl, our history is very similar. I was on 1 BP med with no symptoms and decent cholesterol, had a heart attack at 57. My Dad died at 42 from heart attacks. My MD ran the test and mine was 1400. Since then I have been on Zetia which has drastically improved my cholesterol but I would love to be in this study. My best wishes to you and your health

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my CAC score at 62 was 2418 and had tried a few clinical trials but did not qualify for any until this Lilly trial. My lp a came in at 255 and thankfully they considered my age at now 66 as a third risk factor. so i'm also in this study. because it's a blind study, i may be getting a placebo, but i'm happy to have qualified... my second injection comes in a month, but based on the phase 2 trials it can reduce the lp a by 95%.

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The lab I went to measured Lipoprotein (a)
Normal value: < 75.0 nmol/L, mine was 15.6

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Profile picture for jenatsky @jenatsky

The lab I went to measured Lipoprotein (a)
Normal value: < 75.0 nmol/L, mine was 15.6

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Oh that’s good to hear. 👍🏻

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Profile picture for dnward12 @dnward12

my CAC score at 62 was 2418 and had tried a few clinical trials but did not qualify for any until this Lilly trial. My lp a came in at 255 and thankfully they considered my age at now 66 as a third risk factor. so i'm also in this study. because it's a blind study, i may be getting a placebo, but i'm happy to have qualified... my second injection comes in a month, but based on the phase 2 trials it can reduce the lp a by 95%.

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@dnward12 oh that’s good. So did you have any side effects or anything from the first injection?

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Profile picture for kramos67 @kramos67

@dnward12 oh that’s good. So did you have any side effects or anything from the first injection?

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@kramos67 the good thing is that i had a burning sensation for about thirty minutes that radiated around the injection site, so i'm really hopeful that i got the real thing, as that is a side effect that's been noted from the second stage trial.

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