Lp(a) is CAUSAL for AVS!

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Nocturne

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Joined
Feb 28, 2016
Messages
487
Location
Rhode Island
If you are coming here with a normal tricuspid valve and CALCIFIC DEGENERATIVE aortic valve stenosis, don’t let anyone here dump on you for having “done it to yourself”, as happened to me. High Lp(a) is determined by genetics and some people have shockingly high levels of they have more than one copy of a mutant allele that raises it (I have two and my Lp(a) is 13 times normal, triple the “extremely high risk” rate). If you have AVS from high Lp(a), it is likely that your AVS is only one facet of your health problems, as high Lp(a) drives coronary artery disease and other problems as well. Most people here have AVS because they were born with bicuspid valves, and don’t really understand about Lp(a). This is a place for THEM. There are other places for high Lp(a) patients, like the Lp(a) Foundation on Facebook. Find out about the new drugs coming out (Phase 3 trials started this year) that can lower Lp(a) by as much as 90%! Treatment that can slow the progression of your AVS is on the way!

https://www.medscape.com/viewarticle/912554#vp_2
 
Hi Noct good to see you. @Agian (among others) has missed your charm and helpful posts.

Most people here have AVS because they were born with bicuspid valves,
not to mention those who had other diseases like scarlet fever ...

and don’t really understand about Lp(a).
correct, we're not experts on everything here....

This is a place for THEM.
I'm not sure who "THEM" is but if its people facing AVR and MVR then it is a place for them ... and IF you ever had or ever were facing AVS it will also also be a place for you to mate ... I hope you never need it (which you may not).
 
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Yes, Pellicle - and Rheumatic Fever (diagnosed, but it wasn't until the AVR that the pathologist determined that the issue wasn't valve damage from Rheumatic Fever - it was a bicuspid valve that I was born with).
 
My guess is leaky gut may also be a primary driver, I have tricuspid aortic valve with low lp(a), with atherosclerosis including severe aortic stenosis (valve now replaced). A leaky gut can cause massive inflammation. Think about what must happen when undigested food, bacteria, and toxins leak into the blood system.
 
If you are coming here with a normal tricuspid valve and CALCIFIC DEGENERATIVE aortic valve stenosis, don’t let anyone here dump on you for having “done it to yourself”, as happened to me. High Lp(a) is determined by genetics and some people have shockingly high levels of they have more than one copy of a mutant allele that raises it (I have two and my Lp(a) is 13 times normal, triple the “extremely high risk” rate). If you have AVS from high Lp(a), it is likely that your AVS is only one facet of your health problems, as high Lp(a) drives coronary artery disease and other problems as well. Most people here have AVS because they were born with bicuspid valves, and don’t really understand about Lp(a). This is a place for THEM. There are other places for high Lp(a) patients, like the Lp(a) Foundation on Facebook. Find out about the new drugs coming out (Phase 3 trials started this year) that can lower Lp(a) by as much as 90%! Treatment that can slow the progression of your AVS is on the way!

https://www.medscape.com/viewarticle/912554#vp_2

I’m fascinated and grateful to read your comments. I’m a 73 year old grandmother that had TAVR in September 2019. My severe AS was supposedly due to the rheumatic fever I had as a child. However, when I was about age 50, I was living near Charleston, SC and they were unable to get my cholesterol lowered. So, they put me under the care of a cholesterol specialist at MUSC who said I have the highest Lp(a) he’d ever seen. He explained, if I remember correctly that Lp(a) is genetically handed down through females, (???). My grandmother died at age 57, in 1957, of her third heart attack. I’m placing a heavy bet that Lp(a) dropped her like a rock. She came from an era where good women got up early, put on an apron, and fixed bacon, eggs, grits, and toast for breakfast. Country ham, potatoes and gravy...on and on. In 1957, nobody was taking cholesterol lowering meds, and if they knew about Lp(a), meaningful help certainly wasn’t reaching anybody. So, I was put on Niaspan. By week two, I was in the ER having a near death allergic reaction. I’m thrilled to death to hear that Lp(a) help is right around the corner. My cardiologist will be getting a portal message from me this week. BLESS YOU!
 
I came across this article and if I had a high lp(a) I would use the information in it as a starting point for developing my strategy. The key concept of the article is to lower ldl-p (particle #) as a means of reducing risk. Also a discussion of supplements that may help as well as references to related scientific articles.
The Cleveland Clinic references a study on this blog page, without citing or linking to it, that looked at 5,000 patients with elevated Lp(a). When the LDL in these patients was brought down (not specified whether this was LDL-C or LDL-P), the “increased risk for mortality from Lp(a) was negligible.”

Can you Lower Lp(a) with Diet and Supplements?
 
I got my LDL down to the 70's but my HDL is stuck in the 30's and Lp(a) is 88...Wish I could shift these #'s...I have got HDL from 32 to 36...
 
I’m fascinated and grateful to read your comments. I’m a 73 year old grandmother that had TAVR in September 2019. My severe AS was supposedly due to the rheumatic fever I had as a child. However, when I was about age 50, I was living near Charleston, SC and they were unable to get my cholesterol lowered. So, they put me under the care of a cholesterol specialist at MUSC who said I have the highest Lp(a) he’d ever seen. He explained, if I remember correctly that Lp(a) is genetically handed down through females, (???). My grandmother died at age 57, in 1957, of her third heart attack. I’m placing a heavy bet that Lp(a) dropped her like a rock. She came from an era where good women got up early, put on an apron, and fixed bacon, eggs, grits, and toast for breakfast. Country ham, potatoes and gravy...on and on. In 1957, nobody was taking cholesterol lowering meds, and if they knew about Lp(a), meaningful help certainly wasn’t reaching anybody. So, I was put on Niaspan. By week two, I was in the ER having a near death allergic reaction. I’m thrilled to death to hear that Lp(a) help is right around the corner. My cardiologist will be getting a portal message from me this week. BLESS YOU!

Warning: zombie thread being resurrected:
"if I remember correctly that Lp(a) is genetically handed down through females, "

It can actually be passed from either parent. My maternal grandfather died at age 52 of heart disease. His dad died at 54 of heart disease. They both smoked. The family always chalked it up to smoking, but I knew there had to be more going on, as smoking rarely causes heart attacks that young. My brother and I always tried to live healthy lives, watching our cholesterol very closely, in case there was something genetic in the family. Then, last year it was discovered I had very elevated Lp(a) 243 nmol/L, putting me in the 90-95%. I had my brother and mom tested, both similar levels. Both my daughters tested and one has high levels, 150 nmol/L, the other is normal at 15.
You want to be under 75 nmol/L, It is also often measured in mg/dl, in which case you want to be under 30mg/dl. So, I am over 3x the desired level.
I went off of lipitor, which lowed my Lp(a) 5%. Yes, statins raise Lp(a) for most people, for some as much as 20-30%.
I went on high dose fish oil, 4g of EPA, the clinical level shown to have CVD benefits in the Reduce IT trial, and this lowered it another 5%. Some people get more reduction than this from fish oil, BTW.
But, the thing that really knocked it down was going on PCSK9-I - Repatha. My level dropped another 40%, down to 131 nmol.L. I am still 75% above where one wants to be, but in that I started at 224% above the normal range, I am very pleased with the results.
Hopefully the antisense drugs will be available to us all in a few years, which should lower Lp(a) by 80-90%,
 
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Warning: zombie thread being resurrected:
"if I remember correctly that Lp(a) is genetically handed down through females, "

It can actually be passed from either parent. My maternal grandfather died at age 52 of heart disease. His dad died at 54 of heart disease. They both smoked. The family always chalked it up to smoking, but I knew there had to be more going on, as smoking rarely causes heart attacks that young. My brother and I always tried to live healthy lives, watching our cholesterol very closely, in case there was something genetic in the family. Then, last year it was discovered I had very elevated Lp(a) 243 nmol/L, putting me in the 90-95%. I had my brother and mom tested, both similar levels. Both my daughters tested and one has high levels, 150 nmol/L, the other is normal at 15.
You want to be under 75 nmol/L, It is also often measured in mg/dl, in which case you want to be under 30mg/dl. So, I am over 3x the desired level.
I went off of lipitor, which lowed my Lp(a) 5%. Yes, statins raise Lp(a) for most people, for some as much as 20-30%.
I went on high dose fish oil, 4g of EPA, the clinical level shown to have CVD benefits in the Reduce IT trial, and this lowered it another 5%. Some people get more reduction than this from fish oil, BTW.
But, the thing that really knocked it down was going on PCSK9-I - Repatha. My level dropped another 40%, down to 131 nmol.L. I am still 75% above where one wants to be, but in that I started at 224% above the normal range, I am very pleased with the results.
Hopefully the antisense drugs will be available to us all in a few years, which should lower Lp(a) by 80-90%,
Lots do digest--I would not do fish oil as it damages the heart,, PCSK9 I will ask about that...Never heard statins raise Lpa
 
I always get an Advanced Lipid profile done when I get my semi-annual blood work. I have struggled with my keeping all my lipid numbers ( large and small particle sizes of both good and bad ) for years, I exercise 4 days a week and can’t even get my HDL above 38, but heat when I have my AVR done last year they did checked my arteries and said no signs of issues and not likely going to see any issues for another 30 years. So while my numbers and not good there is something to say for eating decent and exercising to help overcome genetic predispositions. Not to say it is an excuse, but we can only do the best we can with the hand we are dealt.

There was a good show on PBS like 5-10 years ago about Heat Disease by Gary Null, excellent watch. It takes about how statins have adverse side effects and when you take statins you need to be taking CoQ10.
 
I always get an Advanced Lipid profile done when I get my semi-annual blood work. I have struggled with my keeping all my lipid numbers ( large and small particle sizes of both good and bad ) for years, I exercise 4 days a week and can’t even get my HDL above 38, but heat when I have my AVR done last year they did checked my arteries and said no signs of issues and not likely going to see any issues for another 30 years. So while my numbers and not good there is something to say for eating decent and exercising to help overcome genetic predispositions. Not to say it is an excuse, but we can only do the best we can with the hand we are dealt.

There was a good show on PBS like 5-10 years ago about Heat Disease by Gary Null, excellent watch. It takes about how statins have adverse side effects and when you take statins you need to be taking CoQ10.
Excellent that you get an advanced lipid panel often! I would encourage everyone to get an advanced panel whenever they have lipids checked- so much vital information. Most testing is done at either Quest or Labcorp. I would strongly recommend getting your advanced panel done at Quest- their advanced panel is called the Cardio IQ and is excellent, including Lp(a) and also about as much as anyone would wish to know about particle number and particle size. The advanced panel at Labcorp is called the NMR and it provides most of the same info about particles and particle size, but not Lp(a). If for some reason your doc insists on sending you to Labcorp, make sure he writes a separate script for Lp(a)- Labcorp will test for it, it is just not included in their advanced panel.
 
I always get an Advanced Lipid profile done when I get my semi-annual blood work. I have struggled with my keeping all my lipid numbers ( large and small particle sizes of both good and bad ) for years, I exercise 4 days a week and can’t even get my HDL above 38, but heat when I have my AVR done last year they did checked my arteries and said no signs of issues and not likely going to see any issues for another 30 years. So while my numbers and not good there is something to say for eating decent and exercising to help overcome genetic predispositions. Not to say it is an excuse, but we can only do the best we can with the hand we are dealt.

There was a good show on PBS like 5-10 years ago about Heat Disease by Gary Null, excellent watch. It takes about how statins have adverse side effects and when you take statins you need to be taking CoQ10.
Keith, to follow up on your comment about statins. I do believe that statins help many people, which is supported by many clinical trials. However, I do also believe that many docs are too quick to prescribe statins. If one has had a CVE or if they have heart disease, statins have been shown to reduce events (reduce HR). However, if a person has no heart disease, which would be reflected in a 0 calcium score on a CAC, then it has been shown that statins have no benefit- see study linked here:
https://www.tctmd.com/news/statins-...y Calcium Is Zero, Study Shows,-The study was
Generally, a physician is going to prescribe statins if they detect an elevated LDL. But, if they are following the clinical evidence, the next question should be whether the patient has heart disease. So, get a CAC or a CIMT to determine. CIMT is a little harder to find and measures carotid plaque, but this almost always tracks with coronary plaque.
No heart disease would indicate that the endothelium is still doing its job regardless of the LDL level, so perhaps no need for statins yet, provided the endothelium keeps doing its job.
If heart disease has been detected, or if the patient has had an event, I would argue that it is still not automatic to prescribe statins. They should first check Lp(a) level. If LDL and Lp(a) are both elevated, your doc should consider putting you on a PCSK9-I which lowers both and probably has a better side effect profile than statins. If a person has very high Lp(a) and elevated LDL, it is possible that the reduced HR from statins reducing LDL could be offset by the increased HR from statins increasing Lp(a) and it is even possible, if Lp(a) is high enough, that the hazard ratio is being increased by the statin above the non-treatment level. And it gets a little more complicated than that, because one statin may raise Lp(a) 25% for someone, while another statin might not raise it at all and the dose of the statin can affect how much Lp(a) moves also. So, it really comes down to what I call n=1 medicine or individualized medicine.
In an ideal world, for what it's worth, here is my take on what should be considered by your doctor before statin is prescribed.
1. Confirm there is heart disease or prior event before prescribing statin. This can be done with a CAC or CIMT. We should also add that perhaps one should consider lifestyle changes first before statin, so see if that can get LDL into target range.
2. Confirm Lp(a) is not elevated before statin- it is elevated for 20% of the population.
3. If Lp(a) is also elevated, practice individualized medicine to obtain the lowest hazard ratio by finding the treatment option that lowers LDL to target, but does not impact Lp(a) significantly.
4. If no statin can be found that brings LDL to target and leaves Lp(a) alone, then consider PCSK9-I.
5. Prepare for a battle with your insurance company who will not want to cover the PCSK9-I- they are expensive.
 
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Keith, to follow up on your comment about statins. I do believe that statins help many people, which is supported by many clinical trials. However, I do also believe that many docs are too quick to prescribe statins. If one has had a CVE or if they have heart disease, statins have been shown to reduce events (reduce HR). However, if a person has no heart disease, which would be reflected in a 0 calcium score on a CAC, then it has been shown that statins have no benefit- see study linked here:
https://www.tctmd.com/news/statins-...y Calcium Is Zero, Study Shows,-The study was

Agreed, not saying they are not helpful for some people, but yes DRs are too quick to prescribe certain drugs and never have the conversation about the tradeoffs and how to mitigate them. Generally if you are on a statin you should be taking CoQ10. I do not have or need a statin, but have been taking CoQ10 longer than I can remember. There are certain heart healthy supplements I take every day for years, 81mg aspirin, High Omega 3 Fish Oils, CoQ10 and magnesium Glycinate. For last few years I also take organic garlic pills (not extracts, basically garlic powder in pill form). Magnesium is important for heart health and heart rhythm, I was told a few years back the ideal magnesium number in labs is 2.0 even though 1.8 is the low end of the range I was encouraged to stay at 2.0 or slightly higher. Do so really helped with my PVCs. Most Magnesium is oxide which is not well absorbed.
 
Agreed, not saying they are not helpful for some people, but yes DRs are too quick to prescribe certain drugs and never have the conversation about the tradeoffs and how to mitigate them. Generally if you are on a statin you should be taking CoQ10. I do not have or need a statin, but have been taking CoQ10 longer than I can remember. There are certain heart healthy supplements I take every day for years, 81mg aspirin, High Omega 3 Fish Oils, CoQ10 and magnesium Glycinate. For last few years I also take organic garlic pills (not extracts, basically garlic powder in pill form). Magnesium is important for heart health and heart rhythm, I was told a few years back the ideal magnesium number in labs is 2.0 even though 1.8 is the low end of the range I was encouraged to stay at 2.0 or slightly higher. Do so really helped with my PVCs. Most Magnesium is oxide which is not well absorbed.
Keith,
We must be following the same literature on supplements, because I take all the same ones that you take. Yes, important to take CoQ10 if taking a statin, which I did for years. No longer take statin, but still take CoQ10. Like you, I also take 81mg aspirin(unless it is a kickboxing day), high Omega 3, and magnesium. I eat several fresh cloves of garlic per day in my Mediterranean salad, so I don't need to supplement.
I take a few others- Curcumin, berberine, D3, K2 and sulforaphane, in addition to the fresh sulforaphane (well the precursors) that I get from eating large amounts of cruciferous and and home grown broccoli sprouts.
 
Agreed, not saying they are not helpful for some people, but yes DRs are too quick to prescribe certain drugs and never have the conversation about the tradeoffs and how to mitigate them. Generally if you are on a statin you should be taking CoQ10. I do not have or need a statin, but have been taking CoQ10 longer than I can remember. There are certain heart healthy supplements I take every day for years, 81mg aspirin, High Omega 3 Fish Oils, CoQ10 and magnesium Glycinate. For last few years I also take organic garlic pills (not extracts, basically garlic powder in pill form). Magnesium is important for heart health and heart rhythm, I was told a few years back the ideal magnesium number in labs is 2.0 even though 1.8 is the low end of the range I was encouraged to stay at 2.0 or slightly higher. Do so really helped with my PVCs. Most Magnesium is oxide which is not well absorbed.
Keith thank you
 

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