AVS and Lp(a) -- how well known?

[Nocturne]

http://www.lipoproteinafoundation.org/news/347368/Link-between-Lpa-and-Aortic-Valve-Disease.htm

"Recently published research has shown that elevated Lp(a) is the strongest independent genetic risk factor for heart valve disease and individuals with high Lp(a) may also be susceptible to earlier and more aggressive valve disease."

“These data demonstrate that among those with high Lp(a), nearly one third of heart attacks and half of all cases of aortic stenosis can be attributed to high Lp(a) and may be preventable with Lp(a) lowering therapy. Lowering Lp(a) could significantly reduce the impact of cardiovascular disease”

* * * * *

When I first came here, no one even mentioned Lp(a) in connection to CAVS. My doctors didn't know about it -- not the cardiovascular surgeon, not the lipid specialist. Is this really so poorly known about?

Some of you guys have been around here for a long time. Had any of YOU ever heard about this?

It's been recognized by some researchers, at least, for a few years now.

 

[Agian]

I did, if you remember.

 

[Nocturne]

I really did not remember you mentioning anything about the connection. Months ago, when I first came here? I remember being freaked out that I was so young to be having CAVS, and with an apparently normal valve. I don't recall ANYONE recommending that I get my Lp(a) checked, or suggesting that that might be the cause.

I didn't learn the connection until after I learned I had sky-high Lp(a) and did some reading about it.

I'm not pointing a finger, just shocked that this information seems so little known, especially among people who you'd think WOULD know.

Met a more informed doc online who practices the Bale Doneen method and tells me he would put me on niacin and a PCSK9 inhibitor. Going to wait until I know if I am in that drug trial or not before going with him -- I should know by the end of the month.

 

[Agian]

Are you kidding me?

Let me guess, Niacin and Evolocumab.

 

[Agian]

I'm not pointing a finger, just shocked that this information seems so little known, especially among people who you'd think WOULD know.

You're catching on fast.

Now repeat after me 'Mupiiits' LMAO

 

[Paleowoman]

When I first came here, no one even...s in BAV but they have not shown any success.

 

[Nocturne]

You're catching on fast.

Now repeat after me 'Mupiiits' LMAO

I meant you guys, too.

I don't recall you ever suggesting, way back when I first came here confused about how I got this at my age with no BAV, that I might want to have my Lp(a) checked because crazy high Lp(a) could be the missing piece of the puzzle.

But yes, American doctors seem pretty clueless about this stuff.

 

[Nocturne]

Paleowoman, I'm talking specifically about the connection between high Lp(a) and CAVS. This is an AVR forum, so you'd think the people here would have known about it, even though most got here due to BAV.

Why isn't it standard policy to test the Lp(a) of people with AVS? Why isn't it policy to test EVERYONE at least once in their lives?

If I had known... If I had just been warned...

My CAVS is really just another "symptom" of the same disease that brought me premature CAD and other problems. A disease that has no name and is barely recognized by the medical community, whose "treatment" by and large consists of saying, "Meh -- nuttin' we can do 'bout 'dah..."

That will hopefully change soon, but... I'm just surprised that no one here seemed to know the connection, and no doc I have physically spoken to face to face has known about it either. A cardiologist, a lipidologist. People you'd think would KNOW.

 

[Paleowoman]

Why isn't it standard policy to test the Lp(a) of people with AVS? Why isn't it policy to test EVERYONE at least once in their lives?.

It's certainly not standard to test Lp(a) in the UK. But here from labtestsonline: http://labtestsonline.org.uk/underst.../lp-a/tab/test so it is requested sometimes, but not with BAV:

Lp(a) may be requested with other lipid tests in patients who have developed cardiovascular disease at a young age or who have a family history of premature heart disease. Its measurement will tell the doctor whether the concentration of Lp(a) is contributing to the patient’s risk of cardiovascular disease. Since the concentration of Lp(a) is largely genetically determined, lifestyle changes or treatment with statins or fibrates will usually be ineffective in lowering the concentration in the blood, although treatment with niacin or nicotinic acid may achieve a 20% reduction. If an elevated concentration of Lp(a) is found, your doctor will treat modifiable risk factors more aggressively to minimise cardiovascular risk.

and:

Although some cardiologists and other doctors occasionally request Lp(a), it is not a routinely used test. It is not routinely used and is currently not recommended for widespread testing.

 

[Nocturne]

You know what it is? I feel -- for lack of a better word -- alone.

You're right, Paleo -- the vast majority of people here are bicuspid valvers, and their experience and advice is keyed to that.

I can go to an Lp(a) forum and the people there are nice, but none of them are dealing with AVS. It's... a really small forum.

There's one little movie there concerning a woman who had a heart attack and needed bypass surgery as well as AVR at the age of 35 due to her extremely high Lp(a). That's the only other person like me that I've heard about.

Maybe I should try to find her.

 

[Nocturne]

Although some cardiologists and other doctors occasionally request Lp(a), it is not a routinely used test. It is not routinely used and is currently not recommended for widespread testing.

WHY NOT?!?

Why WAIT for someone to develop heart disease to warn them that they're much more likely to develop heart disease due to a genetic factor? Why wait until it's too late?!?

That test costs $30, and 1 in 5 people has elevated Lp(a) -- not to the degree *I* do, but elevated. That means it would cost $150 to identify someone with high cardio risk due to Lp(a), and warn them when they are young to be extra careful about getting their cholesterol checked EVERY YEAR, never letting themselves get overweight, being careful about exercise, etc. Consider all the tests we run on babies when they are born to look for really obscure diseases, and how much THEY must cost. Is my long term health, and the long term health of my kids and other people like us, really just not worth the $150 it would cost to tell us we're at high risk?

Really?

Do we not do it because the medical establishment doesn't like feeling impotent when it comes to treating it? Is that it? Assuaging discomfort for the people who aren't affected?

I just do not understand.

Why was this allowed to happen? I lost a lot of weight and started eating well BEFORE I learned about any of this -- I could have done it through my whole life. I likely *would* have, if I'd just been warned. It would have cost $30...

 

[mikeccolella]

Sorry to hear about your predicament. here are the three top causes of stenotic valves:

In adults, three conditions are known to cause aortic stenosis. Progressive wear and tear of a bicuspid valve present since birth (congenital). Wear and tear of the aortic valve in the elderly. Scarring of the aortic valve due to rheumatic fever as a child or young adult.Oct 30, 2015

i have to wonder about the one related to aging. Perhaps lp(a) is a factor as im sure smoking, diet and exercise are.

 

[Nocturne]

Sorry to hear about your predicament. here are the three top causes of stenotic valves:

In adults, three conditions are known to cause aortic stenosis. Progressive wear and tear of a bicuspid valve present since birth (congenital). Wear and tear of the aortic valve in the elderly. Scarring of the aortic valve due to rheumatic fever as a child or young adult.Oct 30, 2015

i have to wonder about the one related to aging. Perhaps lp(a) is a factor as im sure smoking, diet and exercise are.

The Lp(a) IS a factor, as is the bad allele I am homozygous for. But no one here knew about that, and local doctors don't seem to know about it either.

I *knew* there was something off about a 42 year old guy developing CAVS with a normal valve. My worry was that it was due to my bad cholesterol and 5-6 year obesity stint. People here, and local docs, seemed willing to go with that -- but how many 40 year olds do you know who have high cholesterol and obesity? How many of them have CAVS? Exactly.

Had I known about the genetic issue, I might have grown up and lived as carefully as some of the people here who DID have the luxury of knowing they were in danger.

All it would have taken was a $30 test.

A test we STILL don't give routinely.

I don't get it.

 

[Nocturne]

Are you kidding me?

Let me guess, Niacin and Evolocumab.

Probably, yes. He claimed that it wouldn't be able to lower a level like mine down out of the "extremely high risk" zone, but that lowering Lp(a) by even 30% could have a significant effect on inflammation -- he was big on the use of inflammation panels.

Here in the states, at least, this kind of medical attention will cost me thousands of dollars out-of-pocket. Sounds like you just get it for free. Must be nice.

But we have GOD on our side...

 

[Nocturne]

It's certainly not standard to test Lp(a) in the UK.

No? But it is TREATED, at least at my level. I am three times the level where apheresis treatment would be administered if I lived in the UK (or Germany), provided there is evidence of coronary disease (which there is, on two counts).

But here in the states, our plan is to shrug and tell the patient to "live your life".

 

[Agian]

If I was a muppet, I'd be this guy

Pellicle and Protimenow
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Nocturne
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[AZ Don]

Seems to me it's a good thing that you found out about the elevated levels of LP(a) since it is a risk factor for a lot more than AVS, and it is treatable.

I'm not up on the muppets.

In reading up about LP(a), while drinking red wine I am comforted by what I found on Wikipedia: Some studies have shown that regular consumption of moderate amounts of alcohol leads to significant decline in plasma levels of Lp-a ...

 

[Nocturne]

AZ Don, whether or not it is treatable depends on who you talk to. As it stands it looks like I am going to have to go through telemedicine in order to get a doc who will treat it, and in any event my levels are so cartoonishly high that there is no way we'll get them to normal levels with any existing treatment -- but that could change if this antisense drug pans out. It looks to me like the best current treatment I could get would be apheresis which could lower my Lp(a) by half (from "extremely high risk" to "extremely high risk", but still, lowered by half), but where I live that is not offered.

It's absolutely better to know about it than not -- just wish I had known when I was 10 and could have made choices accordingly.

I've read about the wine consumption, as well as a number of things like testosterone treatments, nuts, etc. The thing is, most of those things are things I had been doing anyway for months prior to getting my Lp(a) checked -- I shudder to think of what it was BEFORE I was doing them!

I'm not getting the Grover reference. I was always more of a Gonzo. Or maybe Rizzo.

 

[mikeccolella]

The Lp(a) IS a factor, as is the bad allele I am homozygous for. But no one here knew about that, and local doctors don't seem to know about it either.

I *knew* there was something off about a 42 year old guy developing CAVS with a normal valve. My worry was that it was due to my bad cholesterol and 5-6 year obesity stint. People here, and local docs, seemed willing to go with that -- but how many 40 year olds do you know who have high cholesterol and obesity? How many of them have CAVS? Exactly.

Had I known about the genetic issue, I might have grown up and lived as carefully as some of the people here who DID have the luxury of knowing they were in danger.

All it would have taken was a $30 test.

A test we STILL don't give routinely.

I don't get it.

Not many 40 year olds your right about that for sure, but lifestyle does take its toll on our valves as well as our arteries, but again as you say genetics is oftentimes the biggest factor, afterall most people with bad habits never get valve disease to the point they need OHS even in old age. As to why it was never tested my guess is that the medical establishment always factors in a cost factor for justifying routine testing. If the condition is rare then they will not test everyone like they do for say cholesterol. Im not saying its right, but that is how they justify routine testing.

I wish you well

 

[Nocturne]

1 in 5 people have Lp(a) that is high enough to increase their odds of getting heart disease. That's not exactly a rare condition.

(Sure, to the degree that *I* have elevated Lp(a), it's hella rare... But to the degree that it might benefit people to let them know they have an inherently increased risk, it is actually pretty common).