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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jlharsh | @jlharsh | Sep 19 8:54pm

I have a hard enough time with inches and centimeters. 🤪💚

My friend has other lipid problems, so spends a lot of time and energy managing her health. Overall, she would say she has a good quality of life. We met because of our respective lipid problems and we consider that in the win column. You’re making progress towards prevention instead of waiting around to see what happens. Kudos!

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gravity3 | @gravity3 | Sep 22 6:35am

I came across this group earlier. familyheart.org
Checking their website menu are a number of articles regarding high lp(a).

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gravity3 | @gravity3 | Sep 22 6:48am
In reply to @csage1010 "Fortunately, I am not a meat eater. I do like an occasional piece of salmon, but..." + (show)
@csage1010

Fortunately, I am not a meat eater. I do like an occasional piece of salmon, but right now I want to see if I can get my cholesterol down with diet and exercise. I know it will not effect my Lp(a). If my numbers don't start coming down significantly in a month or so, I will have to go on the statin. I have an appointment with my primary care doctor Tuesday and will find out my calcium score (fingers crossed, but I'm not expecting good results). How do you do with adding beans and maintaining good blood sugars? Thank you, Sue McMahon

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Have you visited glucosegoddess.com

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zeke2u | @zeke2u | Sep 22 8:53am

My son recently recorded 700!
He lives in Raleigh. There are a few research projects going on now. It’s genetic so not much you can do about treating it.?
It’s a true marker of heart disease but clean living can help. Get another test done in 6 months

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1 reply
valcie | @valcie | Sep 24 2:08pm
In reply to @zeke2u "My son recently recorded 700! He lives in Raleigh. There are a few research projects going..." + (show)
@zeke2u

My son recently recorded 700!
He lives in Raleigh. There are a few research projects going on now. It’s genetic so not much you can do about treating it.?
It’s a true marker of heart disease but clean living can help. Get another test done in 6 months

Jump to this post

700 Ll(a) is very high!
Doctors are not recommending Repatha?
Any past heart or CV issues?

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1 reply
zeke2u | @zeke2u | Sep 24 2:37pm
In reply to @valcie "700 Ll(a) is very high! Doctors are not recommending Repatha? Any past heart or CV issues?" + (show)
@valcie

700 Ll(a) is very high!
Doctors are not recommending Repatha?
Any past heart or CV issues?

Jump to this post

Lp(a)?
They want him to wait 6 months and be tested again. Me, my siblings, grandparents all have or had heart disease. Hopefully we can live cleaner lives and marry spouses with out heart disease 🤞😉

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valcie | @valcie | Sep 26 12:57am

How old is he? Is he doing dies, lifestyle changes?
My sister has familial hypercholestemia and me with very high Lp(a) so both in our risk gene pool but my 4 sibs won’t even test for it.🤷🏼‍♀️

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hsminc | @hsminc | Sep 27 8:57am

My husband had a Lp(a) of 159 - three times the upper limit of normal. We believe this contributed to his ascending aortic aneurysm. Although his elevated lp(a) was discovered in 2003, nothing was recommended except to keep his LDL at 70. He did that until the aneurysm was noted. Then he was referred to a coronary artery disease specialist. That doctor put him on Repatha. He was also on Zocor but his values got too low in the eyes of his doctor. So he no longer takes .Zocor, just Repatha. His Lp(a) is now about 90 and his LDL is 50. His doctor likes these numbers better than the LDL of 16.

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2 replies
mayoconnectuser1 | @mayoconnectuser1 | Sep 28 8:08am
In reply to @hsminc "My husband had a Lp(a) of 159 - three times the upper limit of normal. We..." + (show)
@hsminc

My husband had a Lp(a) of 159 - three times the upper limit of normal. We believe this contributed to his ascending aortic aneurysm. Although his elevated lp(a) was discovered in 2003, nothing was recommended except to keep his LDL at 70. He did that until the aneurysm was noted. Then he was referred to a coronary artery disease specialist. That doctor put him on Repatha. He was also on Zocor but his values got too low in the eyes of his doctor. So he no longer takes .Zocor, just Repatha. His Lp(a) is now about 90 and his LDL is 50. His doctor likes these numbers better than the LDL of 16.

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hsminc,

How were his other lipids?

Given what you noted, and broad recommendation, was he on statins at some point?

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1 reply
johnsonje62 | @johnsonje62 | Sep 28 12:15pm

I am definitely not a doctor but I, like others here, have heard that high lipoprotein (a) is genetic. I have read that niacin is the only thing that can reduce it. You may look into that and ask your doctor about it. It has to be the nicotinic acid that causes the flush. Niacinamide does not help with that so make sure to do your research and get the right kind of niacin and the right dosage.

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