Since I have no conventional risk factors, the cardiologist suggested checking my LP(a) level. I received a letter this afternoon telling me it is moderately elevated at 170nm/l, but not much more information.
The BHF helpline was good, and she listened as well as pointing me to the Heart UK webpage on LP(a). The callback from the local cardiac rehab nurse was very unhelpful, basically telling me to keep taking the pills and discuss it with the cardiologist next time I see him (maybe January).
It’s going to be a long and lonely weekend, with my brain whirling trying to figure out what this result means. It looks like there is nothing I can do to lower it, and I might have passed it on to my children. This is doing nothing to help my stress levels. Why is there no one to talk to at the weekend?
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Yes, moderately elevated. Are you currently on statins? What is your LDL? Age?
Depending on your individual circumstances, you might want step up your interventions, medical and/or lifestyle.
A CAC scan (calcium score) might also be an order which will give you a very good indirect indication of plaque buildup.
PCSK9 inhibitors, in addition to lowering your LDL will also lower your lp(a) by around 30%. Also keep your eye out for the emerging trials on drugs that will dramatically lower lp(a). Not sure about the UK but they should be available out of trial next year in the US.
Don't expect to get too much information off of hotlines, as lp(a) has still not been widely integrated into medical practices. That hopefully will change soon as emerging therapies to lower it come to market.
Glad they got you in time. So you don't need the CAC scan you know exactly what's going on. In my case, I didn't have a heart attack however, CAC score plus chest pains got me into the cat lab and ended up with six stents. Had I gotten the CAC scan six years earlier when I wanted to it probably all could've been avoided.
Which raises the question of why we don't have Health MOT's. Perhaps every 5 years up to 50 then gradually drop the period until it is every year after say 65 but with greater regularity for those known to be at risk.
Which would presumably greatly reduce overall NHS costs but also personal anguish.
Something like a regular CAC scan would show that statins do less than nothing in slowing or halting the build up of plaque deposits in arteries, and we can't have that becoming common knowledge.
That is not the case. There is plenty of very good evidence that statins a) reduce LDL levels, b) reduce the chances of heart attack or death. What is not so well evidenced is that they achieve b) by means of a).
Statins demonstrably do a great job of reducing LDL levels, that I don't dispute. There is also data that suggests years of statin dosing can extend a life by a matter of days, which is theorised to be down to its mild anti-inflammatory effect. But statins don't stop or slow the rate at which calcium is deposited in the arteries.
But statins don't stop or slow the rate at which calcium is deposited in the arteries.
Statins perform multiple functions, including stabilizing the plaque. Unstable plaque causes heart attacks and stable plaque tends not to. So counterintuitively., calcified plaque is safer than calcified plaque known as "soft plaque" which is more likely to break off and cause a heart attack.
I agree entirely mjames1, providing that we can agree that having calcium laid down in the arteries may be desirable to having so called soft plaques, but it is no good thing at all, resulting in a stiffening of arteries, restriction of blood flow, and eventual blockage.
Yes, ideally no plaque and no calcium, but generally calcified plaque is better because it's more stable. And lowering LDL cholesterol with statins can accomplish that.
With regard to the original question about health checks, it would be good if a standard lipids panel didn't clump all the different types of LDL into one number. Lipid tests are available that do show the different LDLs so that you can see how much LDL is oxidised. This is useful because it is oxidised LDL that is primarily responsible for the damage which results in plaque formation. Again though, people would quickly discover that statins do very little to reduce oxidised LDL levels.
I feel we have come full circle. It's as if the medical profession has a drug which can massively reduce LDL levels so they need a test which shows many people need it. It's not unusual for a high dose statin to reduce LDL numbers by 50% or more, yet this only results in a tiny increase in average lifespan (by Pharma's own numbers). If high LDL was the major risk factor for heart disease, wouldn't it make sense to expect a massive reduction in LDL to have a profound effect on health outcomes? Yet it does not by any measure.
I agree with some of your points about lipid analysis, however I think you're grossly oversimplifying when you say a massive LDL reduction does not have a profound effect on health outcomes. There are a number of trials to the contrary, various population groups, Ascot-LLA and Jupiter just being two. And then the ischemia trial, which shows the power of OMT of which statins are a cornerstone.
Absolutely agree. I have very high LDL cholesterol but good HDL and triglycerides. I recently had a pretty thorough MOT on my heart - a CT angiogram and echocardiogram. I have a structurally normal heart, no issues shown up at all from the echocardiogram and minimal stenosis on 2 vessels in the heart from the angiogram (can't remember which ones without checking the report). I'd had the tests because of pain in my chest that had been going in for a while and something showing on the subsequent ecg. Again, I can't remember without checking.....something to do with T inversion..... So I've been discharged from the cardiologist, no meds and although he pressed me to take statins, I don't see the point. I am 78 years old. The chest pain has been put down to cartilage issues in the ribs and it has gone away now, anyway. However, my brother, who is 2 years younger, has had a heart attack, a stent fitted and now takes statins.
I have had heart disease and had LPa measured 79 and 76 respectively. Heart disease runs in the family.
Elevated LPa is not a good thing and if you have poor diet and have inflamation this can cause calcium to build up in your arteries.
Ldl comes in two sizes small dense is the dangerous type and that's what sticks to the artery walls when the endothelium is damaged. This is caused by inflamation which are due to several risk factors which are obesity, diabetis, smoking etc. So I would pay for ldl particle count.
It's good to keep an eye on inflamation blood markers which are CRP.
I have very elevated lp(a) at 446 nmol. And two stents in what was a 100% blocked RCA. There is no licensed treatment for it although there are some drugs in trials atm. They will have very specific and limited application when released probably as they will be v expensive and the criteria will be not their effectiveness to lower lp(a) but their ability to reduce events like HA and stroke.
The current approach is to lower cholesterol to the levels that you would after a HA, even in those who haven’t actually had a HA. That’s it.
PCKA9inhibitors are not licensed to reduce lp(a) in UK. I am on one because I can’t take statins due to nerve damage from chemo and my lipidologist prescribed it for me. For LDL reduction not lp(a)
So basically you lower cholesterol, don’t smoke, manage your weight, exercise - so exactly the advice you will have been given post HA. And it’s not super elevated
There is a very useful Facebook group (if you use) but it’s private so you need to ask to join. It’s called: “Lp(a)-Patients sharing Research and Information- Lipoprotein(a)”
Similar to you I have had STEMI, cardiac arrest, completely blocked LAD which was stented - all back in 2015. Tests showed elevated cholesterol and LP(a). Since then, apart from being on a statin and low dose aspirin, and trying to stick to a healthy diet, I live a normal active life. Travel extensively, walk as much as possible etc. I’m now 75 and have had no further problems.
This was what I read about life expectancy-
”elevated LP(a) might reduce life expectancy by 1.5 years.” To minimise the risk, healthy diet, stop smoking, exercise regularly- the usual heart health advice.
So in my case I have another 8 or 9 years to go before I need to even start thinking about this.
As people have said previously, you have been fortunate that the blockage has been stented so you are in a better place than before.
My Lp(a) Levi l is 860, my cardiologist was brilliant in explaining it to me. She said, your Lp(a) level is totally separate from your cholesterol, the level your body is never changes, the numbers you have are what you were born with and what you will die with. She said it’s like Velcro that’s inside your arteries, it’s very sticky and catches the cholesterol as it goes past which causes a narrowing of the arteries. She put me on 80mg Atorvastatin as my cholesterol is high and recommends a Mediterranean diet to help with my cholesterol, I hope this helps x
It runs in our family, brother and I have elevated LP(a). My son doesn't, my daughter does. We had them tested at 16 and got her straight to a dietitian and cholesterol monitoring.
In my case I have low HDL cholesterol and moderately high LDL without statins. Post heart attack and stents I am on the usual meds and watch my diet and exercise. Not much else to do at this point.
It's good that your Cardiologist is clued up and you got the LP(a) test. I was only tested after the Cardiologist in my local hospital became inquisitive as to why I had had a heart attack. I was reasonably fit, regularly walked the hills, didn't smoke, drank little alcohol and had a good diet with a total cholesterol never more than 4.4. I was referred to the pathology department where the Pathologist arranged for LP(a) and Homocysteine tests. I was within normal parameters for LP(a), but had a high Homocysteine level which meant that I had a tendency to form blood clots... thankfully easily treatable with vitamin B / folate.
As for your situation, your level is moderately elevated LP(a) which suggests you may be offered some treatment, but your Cardiologist will need to determine the best approach. Please don't panic... this is all about taking measures to reduce the risk of another heart event. You are unlikely to keel over just on account of the diagnosis. I wasn't tested for LP(a) and Homocysteine until 18 months after my heart attack as in my case everything was delayed because I had an elective triple bypass.
Your current medication is already reducing the risk of you having another heart event. It may be that an additional means of treatment will be added to your regime to cover LP(a). Your Cardiologist will determine what. In the meantime please just relax and know that you are already taking steps to reduce risk by taking the medication that you have been prescribed.
I have raised LPa at 390. I have been referred to a lipid clinic. I take Atorvastatin 80mgs and have been started on a new medication called Nustendi. If this doesn’t work then this is an injection called Inclisiran but these can only be prescribed via a lipid clinic and they decide if the levels are high enough. I am awaiting another appointment to see if my family need screening. It isn’t a quick process but you have recently had an angiogram so please try not to spend the weekend worrying.
I'm sorry that you are left feeling so unsupported. It can feel very scary when you learn that you have elevated LP(a) levels (I do too, and discovered this Spring). No-one really understands the function of lp(a) but one in five of us have it. Your level is only moderately raised, which is positive. In my own case, I felt that the good news about discovering it was that I can take action now on the aspects of heart health that can be managed - Heart Health UK has probably explained about keeping your saturated fat level low and pointed you towards the Portfolio dietary recommendations? There are several groups on Facebook for those with raised LP(a) which I've found to be supportive. Of my two adult children, one has had themselves tested and does not have raised LP(a), and the other has yet to be tested. It's by no means certain your children will have inherited it - and if they have, there are likely to be treatments in their lifetime as there are Phase 2 trials currently in operation in several countries. And there are plenty of centenarians with raised LP(a) levels! Please feel free to contact me if you'd like. You are not alone and there are plenty of us out here :).
Hello again, and I've managed to track down the pdf about the portfolio diet - it's here: heartuk.org.uk/downloads/fa.... It's a way of eating designed to keep cholesterol very low (which is all we can do right now in the UK). If you're looking for more info on lp(a), you might like to do a sear h for Dr Thomas DaySpring + LP(a) - he's an expert on it ... Do let me know if there are any problems accessing the pdf.
You are very welcome.. Hopefully the information available from others here will help support you and you'll have informed questions to ask your cardiologist in January. Wishing you well.
Like yourself my heart attack came completely out the blue. Mid 40s, not overweight, relatively fit & healthy. I then had a TIA 12 months later which stumped the cardiologist and neurologist. They then decided to test my lipid levels which showed above average levels. They reckon to an extent that will have contributed to my issues, but not the be all. It’s a tough one give its genetic and I’ll have had it since I was a wee boy. My worry is what I’ll potentially be passing onto my kids.
I’m also being tested for Familial hypercholesterolemia, again more genetics. It is a worry but you have to get on with your life. No medication for it, but hopefully in a few years. Your lipids should be checked annually but I’ve been told by the lipid specialist that the level shouldn’t dramatically change during your life.
if you are in uk we use Thriva (Google them) to do private blood tests I use them all the time to check on HB1ac (diabetes range) and cholesterol and eGFR Creatine range for my kidneys and they do many more. They are professional doctors and they give you a full breakdown report of each test and you can ask them questions. We think it’s marvellous. If anything comes back abnormal you can then see your own GP. You order your test then they send you a pack where you prick your finger drop blood into a little tube send back in their priority envelope in a priority letter box or post office and you get the results in 3 to 4 days. Good luck and hope you get answers. X
I’ve just read a paper which suggests LP(a) can be significantly increased (up to 10-fold) by the damage caused by a heart attack, only falling back to ‘normal’ levels over 2 months later. Since my LP(a) level was measured from blood taken at the time of the major heart attack, or at most, 3 weeks after (I don’t know which sample was sent for testing), would I be justified in asking for a repeat test when I do get to see the cardiologist again?
That seems to me a reasonable request, and you have the evidence to explain why. There are also UK companies who will do private LP(a) testing (that's how I discovered mine, and my GP accepted the result without question), if the cardiologist is reluctant or it's not deemed necessary due to funding constraints. Although the received wisdom is that LP(a) only needs measuring once in a lifetime there is increasing medical evidence that the level can shift. Good luck!
Hi there, I too have elevated LP(a). I was tested this past year after discovering that I had severe stenosis in my LAD during an investigative stress test and nuclear CT. For 4 years I had been experiencing chest pain during fitness walks , had all the usual diagnostic tests and was told after the first set of tests that my arteries were clear and heart was healthy and it wasn't cardiac related. The pain continued and I persisted with my family doctor who referred me back to cardiologist. He reiterated that it wasn't cardiovascular and was likely muscular. We are now 3 years later same problem, not resolved. In November of 2023 once again back at doctor, and back to cardioligist. Repeat of all the usual tests and this time I have severe stenosis, 90% blockage in LAD. Stent was inserted in April 2024. Symptoms did not go away and still have same chest pain with exercise. I requested new cardiolgist, a female, and she has taken this more seriously. I was put on a very low dose of beta blockers to see if pain stops, but it hasn't and I am back in on Nov. 27 for another angiogram....looking to see if there is restenosis, which is very unlikely as I never had any relief at all ,or more likely, microvascular angina. Frustrated, oh yes! I do however, feel very fortunate that I didn't have a heart attack during all of this and that the pain eventually, through much persistence on my part, likely saved my life by revealing the blockage before having a HA.
Now to the LP(a) issue. I was tested this year and am positive. My sister, who has had many stents and double bypass, is also LP(a) positive as well as my 93 year mom, who has never had any heart issues. Two of my 3 daughters, 29 and 35 have also both tested positive. My middle daughter has not yet been tested but will. I feel terrible that I have passed this on to my children but am very grateful that they are 30+ years ahead of me being diagnosed and will be able to take proactive steps and with new treatments on the horizon, hopefully avoid what I have been through. Knowledge is power and this kind of knowledge, albeit sobering, can also be life saving.
I had an NSTEMI in Dec 2020. Don’t need a stent. Blockage in my left distal circumflex. I was 45. Fit and healthy.
At the time I had an LDL of 4.9 bordering on FH. Been tested for FH and came back negative. My Lp(a) at first test was 136 nmol. Had a second test. Year later 168 nmol.
I’ve researched and researched the pro’s and cons of statin therapy and its influence on raising Lp(a) levels.
There is a huge moment now on Lp(a). However even the main players are still completely unaware of the clear risk it poses. Many trials are still ongoing. Only time will tell.
People must understand that Lp(a) (as atherogenic as it is - 6x that of LDL) is the minority particle.
It’s very important to lower Apolipoprotein B in order to lower risk.
In the UK most wouldn’t even be aware of their Apolipoprotein B level. And here lies the danger. It should be mandatory and treated as the fundamental marker for lipid testing.
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