1. < Heart & Blood Health

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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rainerhans | @rainerhans | 21 hours ago
In reply to @agb "I'm not a doctor, but with total cholesterol over 200 and LDL at 141, my understanding..." + (show)
@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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agb | @agb | 1 day ago
In reply to @doddr "My LP a came in at 283. I had already shifted to a mostly plant based..." + (show)
@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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agb | @agb | 1 day ago

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.

REPLY
1 reply
doddr | @doddr | Apr 22 10:54am
In reply to @csage1010 "I am thinking of doing a vegan, low fructose, very low fat diet. There are a..." + (show)
@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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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.

REPLY
1 reply
bitsygirl | @bitsygirl | Mar 11 9:52am

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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rosie66 | @rosie66 | Mar 11 3:53am
In reply to @kjss "I just found this group and think it's very informative....I'm a 53 year old woman who..." + (show)
@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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rosie66 | @rosie66 | Mar 6 12:52pm
In reply to @agb "Hi Rosie: last Fall my cardiologist added Repatha to my cholesterol lowering regimen, and while it..." + (show)
@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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rosie66 | @rosie66 | Mar 6 12:45pm
In reply to @hopeful33250 "Hello @rosie66, There have been some recent comments on this topic, since January of this year,..." + (show)
@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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rosie66 | @rosie66 | Mar 6 5:08am
In reply to @chuckiepoo1 "Hi Rosie, if you don't mind me asking what was your LP(a)? Mine has been checked..." + (show)
@chuckiepoo1

Hi Rosie, if you don't mind me asking what was your LP(a)? Mine has been checked three different times and reminds consistently around 93 or 94. I have been told that it remains fairly constant. What were you taking before repatha? I am very interested in repatha since you indicated lowered your LPA. Best of luck to you in your journey too lower the blood lipids.

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Thank you for your response. I see my heart doctor next week I will ask him. My lipo(a) is 581.4. The nurse said that was the highest she had ever seen. My Dr started me on Zetia, to lower cholesterol. My regular cholesterol is low under 100. Was just on
Rosuvastatin. never on what you mentioned Repatha. Really no cure for it. More cholesterol meds could even raise my lipo(a). !

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