Lipoprotein A - Lp(a)

Has anyone got any experience of very high Lp(a)? With all other detailed parameters and cholesterol panels normal? At a very young age? Gilberts syndrome being the only known medical issue, which appears to be unrelated and typically have better lipid measures anyway.

It’s not me but a family member. It not making much sense at all to me right now. Surely if this was so high something else would be less than optimal? I’m even wondering if there could be an error.

I realise this isn’t a diabetes issue theres a wealth of cholesterol related knowledge here. And as family are recommended to be tested too as it’s strongly genetic related then I might well have it too.

Thanks. My confusion is both ldl and Apo A are both below recommended levels (as is apo b with a good ratio). So I’m not sure how that results in sky high Lp(a). LDL size has extremely low small particles too apparently

niacin might lower levels but doesn’t seem to lower outcome risks. Pcsk treatment in the nhs requires the person to also have FH or a history of cvd, neither of which apply. Also little family history of cvd much at all and none of it young. It seems current treatment is be healthy and maybe take statins. Consider the person in question is still a teen with otherwise perfect scores statins seem the wrong approach

I’ve just recently discovered I too have very high lipo A. And that it’s considered genetic and non modifiable. Again the “treatment” is to make all other modifiable factors as good as possible. Oddly there is no significant history of cvd (grandparents in their 70’s being the only ones), though many on statins but that’s not unusual for people in their 60’s+. I may ask about FH testing once I’ve read a bit more. In the meantime some fresh motivation to get my big girl pants on and get back to the good control, weight loss and improved trigs etc I had before Covid got me and started me on a slippery slope downwards.

MrsA2 said:

I'm currently reading Dr Malcolm Kendricks The Clot Thickens.
In it he recommends to lower lpa
No smoking
No drugs that increase clotting risk...if possible
Take 75g aspirin a day
Take vitamin B3 Niacin, as much as possible (but it can be "flushing")
Take co enzyme q10, 30mg a day
Take 1 g vitamin c a day
Reduce carbohydrate intake

Apparently it's not uncommon to have raised lpa, and there's no drugs to lower it

Click to expand...

I’ve read it’s up to 20% have raised levels. Mine are in the highest quartile of raised though so a much smaller %. And yes a massive # of it is genetic with only minor lifestyle/drug reductions possible. Most therapy is about reducing all the more modifiable risks.

Niacin isn’t without side effects apparently and there’s little evidence (either way) yet if the use of this actually reduces cvd events as compared to without it.

Theres something called pcsk9 with specific criteria for use that does seem to improve outcomes.

A couple of new things are in development, not yet available, including a weekly injectable, that also don’t yet have the effect on outcomes evidenced.

Statins are often prescribed but don’t actually reduce lpa levels and may even raise them but its done on the principle of reducing the risks the associated high ldl may cause

in severe cases with recurrent cv events theres a form of apherisis (dialysis) used.

Im a bit knocked for six right now. Both because of the lack of options and the very scary way it’s portrayed. And even worse it’s me that’s given this to at least one of my children (only 2/3 tested). Luckily all their other markers are at the perfect end of optimal so their risk is still theoretical right now.

Most of my other results aren’t great either as the last year has been difficult for me and a lot of the control and results I had have fallen by the wayside despite knowing it worked previously for me. I’ve not taken the (private) results to my GP yet. My plan is to sort what I can lifestyle wise and do so in 3 months time. Hopefully they will retest under their own criteria and I can at least see that way how much improvement is possible and have time to consider what I’d want to do if things are not significantly changed. Apparently we should be checked for FH too. I’m not so sure we have this as my child’s ldl is very low and mine wasn’t as terrible as is usually quoted for FH - although higher than they like.

I’ve been such a proponent of questioning the cholesterol/cvd/statin status quo and living what I preached in terms of saturated fats etc. I am now questioning my questioning and feeling like I need to re-examine it all again. I’ve been so low physically and mentally for a variety of reasons for so long it’s so hard to find the energy or motivation though. A tiny part of me just thinks sod it. The sensible part of me says fight like hell to be healthy for my kids sake as well as my own.

Zippy1st said:

Well, I have bought ‘the clot thickens’ today … thanks to the group for the recommendation. My recommendation is to watch :


The dr Ekberg seems to be able to explain things clearly which helps me. He does say that if you are FHC then you ( we) are a special case. Not sure I wanted that but one does need to hear the cholesterol argument clearly. I hope to be prescribed pcsk9 next week by my cardiologist. Crazy… I am only about 3% risk for Cvd but I have to see the big guy for fhc.

I ignored my fhc for twenty years but I am in my 60s so am having to rethink. My kids are mid to late 30s. I read that they dont need to worry about this until about 45. They might listen to me by then!

Click to expand...

Not so sure I am FH though. High Lp(a) is a separate risk factor, although some “lucky” people have both. The way NICE works right now is pcsk9 is only authorised for FH so if you have “only” the Lp(a) issue you aren’t strictly entitled to it. I’m approaching 54 and kids late teens/early 20’s. As I said not even started the nhs ball rolling yet and there’s no way I can do anything other than this initial blood test privately.

ps the video link doesn’t work

Antje77 said:

It does when you click 'watch on Youtube'. (Or something like that. Mine says 'Bekijken op YouTube' which means the same but in Dutch.)

Click to expand...

Thanks. Good clear explanation.

Very few of these ounces talk about Lp(a) though. I need to seek some out.