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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Moderator
Colleen Young, Connect Director | @colleenyoung | Oct 15 7:20pm
In reply to @whineboy "First Amendment protections only apply to actions by government entities that impact one’s speech. No FA..." + (show)
@whineboy

First Amendment protections only apply to actions by government entities that impact one’s speech. No FA rights outside of that.
Lots of folks get fired from private sector jobs for imprudent social media posts, the FA is not involved.
I do thank you for the apology.
I am finished with this diversion. Back to lipidology.
Sorry for the hijack, but this was very disturbing.

Jump to this post

@whineboy and @loriesco, thank you for respectfully working things out. I have reviewed the recent discussion and removed the joke as per the Community Guidelines (https://connect.mayoclinic.org/blog/about-connect/tab/community-guidelines/).

Wit, sarcasm and joking will often be misunderstood since we only have words on the page without the benefit of context, body language and tone of voice. I appreciate the apology and bringing the topic back on track.

Moderation of Connect also includes members helping out with reporting anything that needs a moderator's review.

How to report:
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Members can edit their posts within 3 hours of posting. Should you wish to edit outside of this timeframe, send us a note using the form: https://connect.mayoclinic.org/contact-a-community-moderator/

REPLY
1 reply
loriesco | @loriesco | Oct 15 7:33pm
In reply to @colleenyoung "@whineboy and @loriesco, thank you for respectfully working things out. I have reviewed the recent discussion..." + (show)
@colleenyoung

@whineboy and @loriesco, thank you for respectfully working things out. I have reviewed the recent discussion and removed the joke as per the Community Guidelines (https://connect.mayoclinic.org/blog/about-connect/tab/community-guidelines/).

Wit, sarcasm and joking will often be misunderstood since we only have words on the page without the benefit of context, body language and tone of voice. I appreciate the apology and bringing the topic back on track.

Moderation of Connect also includes members helping out with reporting anything that needs a moderator's review.

How to report:
1. Click the 3 dots (...) in the lower right corner of the comment.
2. Select "Report comment"
3. Write the reason for the report and SUBMIT.

Members can edit their posts within 3 hours of posting. Should you wish to edit outside of this timeframe, send us a note using the form: https://connect.mayoclinic.org/contact-a-community-moderator/

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thank you, Colleen. I couldn't figure out why the edit mode didn't work.

REPLY
valcie | @valcie | Oct 16 1:38pm
In reply to @whineboy "First Amendment protections only apply to actions by government entities that impact one’s speech. No FA..." + (show)
@whineboy

First Amendment protections only apply to actions by government entities that impact one’s speech. No FA rights outside of that.
Lots of folks get fired from private sector jobs for imprudent social media posts, the FA is not involved.
I do thank you for the apology.
I am finished with this diversion. Back to lipidology.
Sorry for the hijack, but this was very disturbing.

Jump to this post

I think you pretty much killed off this convo that was specific to Very High Lp(a) concentrations.
This is not the place to air hot opinions on other subjects.
I’m out.

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eugeneb777777 | @eugeneb777777 | 19 hours ago
In reply to @peugh314 "I have read that fasting has no effect on Lp(a). I know that it doesn't help..." + (show)
@peugh314

I have read that fasting has no effect on Lp(a). I know that it doesn't help mine which was 125 mg/dl. I am 52, and the doctors who have checked my neck and heart seem to think that they sound OK. In any event, I have been taking 2000 mg of C for at least 26 years. A dentist who later committed suicide put me on it. I have also read about the Linus Pauling Protocol of taking 3000 mg of Vitamin C and 3000 mg of L-lysine which I am taking spaced out. Sadly, I didn't even know about the Lp(a) until this year. I have also taken Vitamin D at 5000 iu for several years and high dose fish oil. I have tried to stay fit. I was able to reverse pre-diabetes for several years although it has been creeping up slightly with Statin use.

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I'm 34, and I also have 125 mg/dl. I'm scared, did you have any health problems before you found out your lpa level?

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1 reply
vaniag | @vaniag | 11 hours ago

My Lp(a) was 312 nmol, had a NSTEMI 5 years ago at 57, and still have chronic angina. When I was prescribed Repatha it decreased to 267 nmol. 3 years ago I joined the Horizon study - a clinic trial for Pelacarsen. Pelacarsen lowers Lp(a) 80%. We think I am on the real deal, but I have not had Lp(a) tested since. There are at least 2 more studies on medications to lower Lp(a)…I would try to get into one if you can. Mayo Clinic should be able to advise you…

Otherwise, try to get on Repatha or Leqvio. They are PCSK9 inhibitors, but also helps us with high Lp(a). To give you a little peace, my mother’s Lp(a) was tested to be 267 nmol at 85 years old. She has never taken statins or other cholesterol lowering medications, but she did have a CABG at 73 and now experiencing mini strokes. My conclusion after a few years of worry but seeing her experience, is that high Lp(a) is not a death sentence, but we need to take extra good care of ourselves.

So be proactive and be good to yourself. I eat a modified Mediterranean diet and doing well now.

Hug cyber hugs…I know exactly how you feel.

Thea

REPLY
peugh314 | @peugh314 | 1 hour ago
In reply to @eugeneb777777 "I'm 34, and I also have 125 mg/dl. I'm scared, did you have any health problems..." + (show)
@eugeneb777777

I'm 34, and I also have 125 mg/dl. I'm scared, did you have any health problems before you found out your lpa level?

Jump to this post

I believe that mine is 138. I have read recently that aspirin helps prevent the clotting part. I just turned 54. I started blood pressure meds years ago. I also have taken around 2000 to 3000 mg of vitamin C since my 20s on the advice of my dentist. I am taking L-lysine in the same dose now. I am also starting lifting weights and near a blackbelt in karate. I have read that they have a medicine similar to a once a year vaccine that will knock Lpa down by 93% that should be available in about a year. Stay active and enjoy your life. We have no guarantees.

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