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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@csage1010

Hi, thank you, that was a very helpful video. I don’t get to meet with the lipid specialist for another month. My primary has started me on a statin and baby aspirin in the meantime.

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Hi, I have 329.1 high lipoproteinA. I was on 10mg statin and had a RCA stemi heart attack 3 months ago. I was put on 80 mg statin after heart attack and now going to start just 40mg. I was wondering how much statins they put you on? My Cholesterol was not high. I had been a vegan for 5 yrs before this happened. I am a 65 year old female. We have hypercholesterolemia in my family so I watched my cholesterol. I did not know about my high LipoproteinA until 1 month and 9 days before I had a heart attack. It was checked because I had an abnormal EKG. They should have sent me to a Cardiac doctor but they didn't. So, now that I know I was curious as to how much statins they give because of high LipoproteinA. I also had a low HDL of 45 but now it is 52. It had been being 56 before. I also take an aspirin now along with Metaporlol succinate25 and 2xday Brilinta 90mg. and the 40 Atorvastatin.

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@csage1010

I am thinking of doing a vegan, low fructose, very low fat diet. There are a few well known (and one really reputable ) doctors that advocate for this. One is Dean Ornish, the others are Caldwell Esselstyn and Neal Barnard. I think I feel more comfortable with that, but I meet with the lipid specialist in one month. You are correct, statins do nothing for Lp(a), except reduce your other risk factors. Appreciate your sharing your success story!

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I too have a high Lp a of 283 nmol/L and already have low overall cholestrol using statins. My wife and I have shifted to a mostly plant based diet with some salmon/shrimp/tuna occasionally. After a short time my cholesterol went down some more and I lost 10 pounds without trying. Given that LP a is genetic there is little one can do except embrace a more healthy lifestyle (be active and exercise) and a very careful diet. I am contacting family members and recommending they get checked as well. We avoid sugar, seed oils, most meats and dairy products and only a small amount of good fats. We eat only whole grains with a low fat content. Eating out and traveling is a huge challenge. My wife has chronic kidney disease and the diet increased her eGFR almost 50% in just a few weeks on the diet. For us, Fast Food is poison. Often, even the vegan foods have lots of added seed oil. However, We found the diet to be easier that we thought possible. Hopefully, the clinical trials to lower Lp a will soon be sucessful and approved.

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@agb

I'm not a doctor, but with total cholesterol over 200 and LDL at 141, my understanding is that you are at high risk. You should be looking at total cholesterol in the 150 range and LDL, for the "normal" population at under 100; I would think based on other risk factors yours should be under 70. If you are at a higher risk, then LDL needs to be under 50. Even if you moved to a perfect diet, weight, and exercise, you're not going to get those numbers without drugs. Takes me 3 (statin, etezimibe, repatha) to get there. Also, as noted above, the high sensitive c-reactive protein test is another good place for your doctor to assess risk.

The Repatha injection seems to be lowering Lp(a) for me and others here, but it's not the primary use. For me, it lowered my LDL from 109 to 27 and total cholesterol from 175 to 87.

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My husband’s cardiologist prescribed Repatha for his high LPA, was 270 and is now 160 after 2 injections.
We are fighting for more injections to pay, with our insurance, $700 for 4 injections.
The doctor is trying to help us with statements,
Until now, it doesn’t work 🤷‍♀️

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@doddr

My LP a came in at 283. I had already shifted to a mostly plant based diet based on Dr. Esselstyn's book since July 2023. I have an article from another source that if you are eating a diet as you mention above, stay active and get exercise, the extremely high Lp a risks are relatively minor. The other key seems to be to check you "high Sensitivity C-Reactive Protein" and if it is low, again, the risks seem much less if not very low. I am still researching to learn more that I can do and will try to share any information I find with you. I too am looking for help. My cardiologist was of little help since their is no pharma treatment yet approved that is practical for me, so far. Several clinical trials are in progress but not expected to be approved until 2025 or later.

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there are some clinical trials open for participation in this area if you are interested. Go to clinicaltrials.gov and filter for Lp (a) to find them

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I'm not a doctor, but with total cholesterol over 200 and LDL at 141, my understanding is that you are at high risk. You should be looking at total cholesterol in the 150 range and LDL, for the "normal" population at under 100; I would think based on other risk factors yours should be under 70. If you are at a higher risk, then LDL needs to be under 50. Even if you moved to a perfect diet, weight, and exercise, you're not going to get those numbers without drugs. Takes me 3 (statin, etezimibe, repatha) to get there. Also, as noted above, the high sensitive c-reactive protein test is another good place for your doctor to assess risk.

The Repatha injection seems to be lowering Lp(a) for me and others here, but it's not the primary use. For me, it lowered my LDL from 109 to 27 and total cholesterol from 175 to 87.

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@csage1010

I am thinking of doing a vegan, low fructose, very low fat diet. There are a few well known (and one really reputable ) doctors that advocate for this. One is Dean Ornish, the others are Caldwell Esselstyn and Neal Barnard. I think I feel more comfortable with that, but I meet with the lipid specialist in one month. You are correct, statins do nothing for Lp(a), except reduce your other risk factors. Appreciate your sharing your success story!

Jump to this post

My LP a came in at 283. I had already shifted to a mostly plant based diet based on Dr. Esselstyn's book since July 2023. I have an article from another source that if you are eating a diet as you mention above, stay active and get exercise, the extremely high Lp a risks are relatively minor. The other key seems to be to check you "high Sensitivity C-Reactive Protein" and if it is low, again, the risks seem much less if not very low. I am still researching to learn more that I can do and will try to share any information I find with you. I too am looking for help. My cardiologist was of little help since their is no pharma treatment yet approved that is practical for me, so far. Several clinical trials are in progress but not expected to be approved until 2025 or later.

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I found a couple of links that might be helpful. FWIW, after reading/discussing my own high lipo(a) (not as high as yours) and high agatston score, I gather that effective treatments are still very new/experimental. Lifestyle interventions don't seem to help. Seems like your cardiologist should be able to guide you.

Anyway, here's a link on repatha:
https://www.verywellhealth.com/praluent-vs-repatha-8576469

Here's a link on a drug that seems to reduce lipo(a):
https://www.ahajournals.org/doi/10.1161/CIRCULATIONAHA.118.037184

If you really want to get technical, there's this:
https://www.acc.org/latest-in-cardiology/articles/2023/09/19/10/54/an-update-on-lipoprotein-a

I wonder if providing arbitrary links really is very helpful. Regardless, I feel your pain of trying to get more information. 🙂

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@kjss

I just found this group and think it's very informative....I'm a 53 year old woman who was recently diagnosed with high lipo protein a (over 600), plus high triglyderides (224), HDL of 71 and LDL of 135. Until last summer, I'd never even heard of lipo protein A and wonder why it's not tested for and discussed more, since it sounds relatively common?

Regardless, what's even scarier to me is that we found out last summer that my 19 year old daughter also has high LPA and LDL levels...and she's a super fit Division 1 collegiate athlete who eats a pretty clean diet (lots of veggies and low fat protein). She's already on a statin, and has to have echos every five years. I guess it's good that we know and hopefully can do something about it, but it's terrifying to me. We also lost my mom at age 58 due to complications of a heart attack, and her father died at age 48 of his third heart attack, so we clearly know where it comes from.

My cardiologist hasn't given me any dietary guidelines as yet so I'm finding your comments interesting. I haven't gotten to read everyone's comments yet but it sounds like either low carb or vegan are the two best options. Wish me luck! And the same to you.
kjss

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Yes it is quite a shock, lipo(a) especially with a very high number. Mine is 531. I have told my son and siblings, wondering if their numbers are high. Seems no cure though my heart dr has started me on another statin. It is difficult to research this. One lady was on this blog 2 years ago with a high number but no longer. I wonder about if she found something to lower her numbers that worked. She talked about exercise and diet. But like your daughter she sounds super healthy. Take care.

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@agb

Hi Rosie: last Fall my cardiologist added Repatha to my cholesterol lowering regimen, and while it lowered my LDL from 109 to 27, there was also a 60% decrease in my Lp(a), although to be fair, I started much lower than you.

I don’t believe Repatha is marketed for anything other than LDL reductions, it may be worth checking. Also, look into clinical trials (if you’re interested), as there are some out there specifically for Lp(a)

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Wow that repatha sounds like magic. I read there really wasn’t much that helped. And it seems such a big number, as you say is hard to budge. So you are probably ok now? Thanks for your response

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@hopeful33250

Hello @rosie66,

There have been some recent comments on this topic, since January of this year, from @dode @meryl59 @kjss @bitsygirl. Perhaps one of these members will respond to your posts. If not, just click on "Reply" under their post and type in your comment or question to them.

If you look under the first post of each discussion group you will see an oval shaped icon that says, "Oldest to Newest" with a drop-down arrow. By clicking on this you can arrange the posts from newest to oldest. That way you are aware of the more recent posts in the group. Each time, however, that you make this change it will automatically revert back to "oldest to newest."

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Thank you so much for your help.

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