I am 64 yr old female. Had HA and 2 stents 6 years ago, following which I changed my lifestyle completely and maintained this. Angina pains returned 18 months , although only slight, but double CABG was required which happened 6 months ago. I have been referred for Lipoprotein A testing. I have the usual cocktail of medications including rosuvastatin and ezetimibe. LDL was 2.2 at last testing 8 weeks ago.
Has anyone had experience of Lipoprotein A testing and the management of this condition please?
Thankyou
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Rosieapple72
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Yes I have been referred to lipid clinic at Harefield. I think I do mean LP (a) but I know so little about this. I was told that if statins do not lower my LDL then I may need injections or aphresis?? I have been on statins for many years and my complete change in lifestyle etc seemed to make little or no difference to my cholesterol levels as I still needed cabg. I just don’t know what to think at the moment so felt a good starting point might be asking for advice based on someone’s experience of this. I have been doing my own research but as usual, Dr Google just seems to make things worse, if that makes sense, so hearing about your experience would be really appreciated. Thankyou.
Hi again. Well you have had two good responses, to which I can't add a lot more really, sadly! I was referred to a lipid clinic due to perceived statin intolerance, but am back on 40 - 80mg Atorvastatin as a consequence of my visit. Initially I was given an LP (a) test "just in case" it was raised, and basically told if it was high it might not be great news and there was not much could be done about it. As has been said the is currently no medication for it and it is fixed from birth. I think the course of action will depend on your individual levels, the aim being to get LDL down as low as possible, preferably 1.7 or below. The problem is that higher LP(a) levels make the bad cholesterol more "sticky" and liable to form plaque, so reducing the level is the only thing you can do, strict diet as has been mentioned won't really help as the liver just makes more if you are not ingesting it. If statins won't lower your LDL you might be able to get other medication such as Incliseran but your levels have to be high enough to qualify and some trusts wont prescribe it anyway due to cost, apparently. At 2.2 I don't think you will qualify anyway.
However at the end of all this I was told not to worry about it too much, as they are not really sure if it is a big factor or not, they just think it might be. There is not enough evidence about it as it is not tested routinely. To be honest I sometimes wish I had never had the test in the first place, but I don't really worry about it. A lot of my family died of CHD so I imagine they might have had high LP(a), but then again I will never know. She also told me that in her opinion as much exercise as possible was the best thing, even at the expense of reducing my statin from 80 to 40mg to prevent muscle aches and fatigue.
My good (HDL) cholesterol is fine and the 80mg plus my lifestyle keeps the LDL down around the required level, it might make you feel better if yours is around this. I had 2 stents for a near totally blocked LAD 6 years ago and am currently fit and running to a decent level for my age, so don't despair, stressing about it is one of the worst things you can do, for many reasons.
One thing I would add Stentsandrun and Rosieapple72 is that testing for Lp(a) is never a bad thing. My son does not have an elevated level, but my daughter does, and she has high LDL for her age (typical teenage diet), so she is seeing a dietitian and she will know that she has to watch what she eats and her lifestyle, and potentially go on statins at some point. We would not have known that without the high Lp(a) reading, as healthy teens are not typically getting cholesterol screenings.
Interesting. I see you are in France, is it tested for routinely there, or are teenagers tested if their parents have high cholesterol levels or have been found to have high LP(a)? Funnily enough the Dr I saw at the lipid clinic was French!
I hope your daughter takes more notice than my children! I have made it very clear to particularly my son that he is likely to have the same genetic predisposition to CHD as me but he still has a "live for the moment" attitude despite being 32.
I am not really convinced that she was not just trying to make me feel better when she said they don't know too much about the risk, it certainly came as a bit of a shock when I got my results but I can't say I have let it prey on my mind, I think it is because I have thrown myself into exercise and just have to accept it is what it is. I personally think they don't know half as much as they do know about heart disease in general to be honest.
I was interested to see that your childen have been tested. I asked my cardiologist if I should tell my 3 adult daughters (29-34) to get tested and he said he wouldn't as it could affect them for insurance purposes. I assume as they could consider this a pre-existing condition if they were to have a heart event. I feel its better to know and be preventative than to not know.
1a2b3 Hm. Agree -- That's a bit odd, I think, as there's much more benefit to knowing predisposition to a condition and treating it preventively rather than having to treat when something dire happens (and much lower cost!) In our case -- and I've said this many times on this forum -- my brother and I are pretty similar in age and physical condition, the only difference is he went on statins in his 30s and now in his mid 50s has only mild plaque buildup, whereas I did not (probably should have insisted earlier! ah well) and have had 2 HAs and 4 stents...so I am a firm believer in doing what you can before a condition develops. I'm guessing I've probably incurred hundreds of thousands of pounds in medical expenses in tests, procedures, emergency transport, hospital stays etc whereas my brother has just taken statins, and very low cost to the health care system...I don't understand insurance companies (well, I do, and I think they exist largely to extract as much money as they can from NHS and private customers whilst paying out as little as humanly possible...)
I agree with you about knowledge being power . Your brother is definitely a poster child for the benefits of statins . Why was he put on them so young ?
His cholesterol was a bit high and he had a very proactive cardiologist. Mine was never over the high end of normal so as long as I was feeling good I didn't worry too much about it...though clearly I should have. At the time in the early 2000s I don't think LPa was on many cardiologists' radar. I didn't hear anything about it until after I started to have heart issues...
My brother, my daughter and I all have high Lipoprotein A levels. In my case, I've had 2 HAs and 4 stents, despite being very healthy and eating pretty well my whole life. I only went on statins, however, after a near total LAD blockage was discovered. Prior to that, my LDL was "high-ish" but not enough to set off warning signs, apparently...
My brother has been on statins for 20 years and has some blockages but not significant enough to warrant interventions.
Not a lot is known about Lipoprotein A yet, except that a high level seems to put you at greater risk for heart/artery issues. In my case, my cardiologist thinks it's preventing me from producing high-enough levels of HDL (good cholesterol). With 80 mg atorvastatin plus 10 mg ezetimibe, my LDL is 1.15 mmol/l. My HDL is only 0.72 mmol/l. It should be above 1.0.
To be honest an LDL of 2.2 (I assume you are using mmol/l) is pretty good even for someone at high risk. It does seem that statins are lowering your LDL, correct? Not sure how much more you'll be able to lower it without an extreme diet.
One thing so far that is known about Lipoprotein A is that it's pretty much set in stone. There are some promising medical therapies that could lower it, so maybe you can get into one of those trials.
I have been doing a lot of reading on Lp(a) since it seems to really be connected to our familiar heart issues (father and uncles, too). There are some VERY incomplete studies on natural supplements that could lower it but mostly anecdotal.
Definitely ask hard questions at the lipid clinic. I believe it's only in the past decade that Lp(a) screening has become more frequent. And, please post here if you find anything out!
After my HA, stents and subsequent triple bypass, I was referred to pathology at my local hospital to try to determine why I had had the blood clot which caused my HA. I was tested for LP (a) and also Homocysteine. The results were that my LP (a) was fine, but I was found to have a high Homocysteine level, the treatment for which is folic acid / vitamin B which is easy to take. I understand that the treatment for LP (a) (only briefly discussed with the pathologist) is rather more complicated and, as pasigal says, you will need to ask those hard questions to ascertain what can be done to reduce the risk.
Incidentally if it helps my LP(a) level is 118nmol/L if it helps anyone, I believe the high risk level is above 125 so I am at the higher end of medium risk. Doesn't help that different countries or even laboratories seem to use different metrics to record it.
Stentsandrun had a great reply. I will add that the lipoprotein test is one and done . It is hereditary, if you are negative you will never have to test again and will never develop it. My sister has it so I tested and have it as well . I had my 92 year old mother tested recently and she has it . She has been on statins since she 65 due to high cholesterol , and has never had any heart issues . I am 66 and recently had stent placed in 90% blocked LAD. Sister has had 3 stents and double bypass . My cardiologist cautioned about having my daughters tested right now as it could impact insurance as it could be considered a preexisting condition .
Gosh your mum has done really well hasn’t she? None of my family have ever been tested but the heart health patterns that have emerged recently are a little scary to say the least!
Hi, yes she has been very fortunate. She was put on stations and BPmed's in her mid 60's after an unexplained fainting incident. Her cardiologist is very pro statins and my family doc feels that this is what has kept my mom alive and healthy in to her 90"s. I might add she smoked for nearly 40 years and quit in her mid 60's . Non drinker. I asked my cardiologist if I should tell my 3 daughters, 28,31,34 to get tested and said he wouldnt't suggest at this time as it could impact them for insurance purposes. I suppose it could be considered a pre-existing condition should they have a heart incident. Seems it would be helpful to know so they could take actions to prevent serious issues from arising, but of course, insurance is always tricky.
Mmm interesting! So you just had stents and no heart attack, same as me. I have heard of others who are similar. I wonder if having a high LP(a) produces more stable plaque that just ends up blocking or nearly blocking the artery more often than plaque that ruptures or breaks off, causing a clot and total blockage/HA? My dad (at 55), uncle, great and great great grandad all died of heart attack, I wonder what their LP(a) was! Not sure if it would be considered a pre-existing condition as they are not even sure it is a factor, although I am kind of convinced it is unfortunately.
BTW great news regarding your mother! has she changed her lifestyle/diet much of just been on Statins? Great advert for them eh?
Any idea what your actual level was if you don't mind me asking?
Hi there, bit of a back story. My journey with a cardiologist started 4 years ago after experiencing chest pain while outside during a brisk walk . The pain came on about 5 minutes after starting my walk and lasted about 10 minutes. I carried on for another hour. I was concerned about the sudden onset and saw my doctor who sent me for a contrast dye stress exercise test ( I am in Canada) and put me on a statin and low dose aspirin . I was scheduled to have a nuclear CT scan using dye injected into your arteries while pictures are taken. This was done two months after the stress test. Both of these tests reported no blockages, and in that in fact, all my arteries were absolutely clear and my heart and lungs were great. The cardiologist told me I could discontinue statins as they weren't indicated. He basically discharged me as he said I didn't have any cardiac issues.
The pain I experienced continued on for 4 years, each time I would do my brisk daily walks or when walking on incline. I endured it for another year and a half but it always concerned me as to why it only happened during exercise. My family doctor referred me back to the cardiologist who suggested it was likely muscular pain because it subsided when I would stretch my back and the fact that I had clear tests showing no plaque.
This past October I went back to my family doctor and told her I felt something just wasn't right and I wanted to go back to the cardiologist. I had a repeat of both tests done, exercise stress test done in October which showed mild ischemia, (which by the way, I had no idea was angina), he said it could also be a false positive. We discussed options and he said I could do a repeat nuclear CT or an angiogram . He felt it was reasonable to do the CT first as it is less invasive and follow with angio if they find something. My CT was repeated in early April and it showed a severe stenosis in my LAD. To say I was shocked would be an understatement. I was immediately put on blood thinners in preparation for an angiogram/angioplasty. My angioplasty was done April 24, I they discovered a 90%in my LAD and a 40% blockage in a smaller artery . A stent was placed in my LAD. I will be on blood thinners for one year.
I was quite shocked that I wasn't advised to have the angio done right away , instead of a CT, considereing that mild ischemia ( also known as stable angina) is only present when there is a blockage. I feel I was walking around with a time bomb for 3 months until the angioplasty was done.
You asked about my LIPO(a) and I believe mine if 156 nm0 and target is 100. I am currenlty on 20mg of Crestor awaiting blood work to see if there has been any improvement. If not , that will be increased and perhaps adding Ezetimibe (Ezetrol) back in . I'm still learning about all of this , so hopefully the numbers I am quoting are correct. I have had slight issues with elevated cholesterol but now they will be very aggressive about getting it under control. I do feel that the presence of the hereditary LIPO(a) is a huge factor. Side note, my younger sister has had 3 stents and a double bypass done over the last 10 years. She also is Lipo positive. She was quite overweight and not very active, but also has lupus which could also be a factor. Lots going on but she is doing well also.
I feel very fortunate that I had the angina as a warning , although it was missed for 4 years. My family doctors first comment to me when she told me the results was "thank God you were persistent and didn't give up seeking answers. She's been my doctor for 30 years and is retiring in October. I don't know what I will do without her.
I should add, I still have the chest pain(angina) . I am repeating the exercise stress test on May 31st, a requirement in order to do cardiac rehab. I will be interested to see what the cardiologist says about the pain
Thank you for your reply. It is very confusing as the measurement seems to be done in different units, either that or there is general confusion or misreporting! Mine was done in nmol/L, which is the same unit as Heart UK have used to define the risk factors which are:
32-90nmol/L (minor risk)
90-200nmol/L (moderate risk)
200-400nmol/L (high risk)
More than 400nmol/L (very high risk)
Mine was 118 which maybe is not too bad, I guess, similarly yours 9if it's the same units) at 156 is not great but not too bad?
Sorry to hear you are still having Angina, hope you get some answers when you meet him, let us know if anything revealing comes from it?
I think it's important to understand where you sit in the population as Lpa is another risk factor. Mines was measured at 79 which puts me in the 80th percentile. At 125 you are in the 90th percentile and above 250 you are in the 99th percentile.
If I watch my diet I can reduce the overall risk.
My poor diet previously caused me to have blocked arteries which caused high BP and being diabetic in 2020 didn't help either.
Through lifestyle and cabg x2 I have removed all my risk factors and my BP today was 108/78. My last h1bwas 33 mmol/mol
It's also worth understanding that, according to the Dr at the lipid clinic, they don't really have that much evidence to make a determination. As the population as a whole is not tested let alone probably the majority of HA and stoke patients, other than those who are sent to lipid clinics or have an LP(a) test for other reasons, there is not much understanding of what is a risk and what is not. In her own words there could be millions of people walking around with high LP(a) who have never and will never have a HA or Angina. I don't see individuals can be put into percentiles when they have no idea how they fit into the population as a whole?
I am in California and had gotten 4 stents due to more 90% blockage in the 3 arteries (still had 2 blockages of 60-70% in distal RCA and a distributary of LADA) and my LDL had been in 70s before the stents and was dropped to 53 with statin. However my Lp(a) was 285 nmol/dL and I know it is an independent risk for atherosclerosis. Most physicians didn't test for it as there is no specific treatment. One has to lower LDL and ApoB aggressively.
There are I believe 4 drug trials in progress and I signed up for Olpasiran but I think i am getting a low dosage (at least better than placebo) as my Lp(a) has dropped to 154 nmol/dL. Ideally it should be lower than 75 nmol/dL. So in first week of April I had a mild heart attack and the distal RCA blockage had grown to more than 90% (thank God the stents were clear and it was not broken plaque) and so got another stent.
The only RISK my cardiologist can point to is Lp(a).
So now target LDL has been lowered to be below 40 mg/dL and ApoB below 50. This lowering occured after taking Ezetimibe 10 mg on top of Rosuvastatin 20mg.
If you want to learn more about Lp(a), you can watch these videos:
I think the key is if you get tested and you have a high number then need to discuss the treatment to lower LDL and ApoB aggressively with lifestyle and medication. Your goals should be individualized to your risk.
The good news is that there are treatments that will be coming to market soon for Lp(a)
michellefisherm I've watched the Attia video on Lp(a). It's quite interesting. Like you, the only major risk factor I can identify in my family is Lp(a) levels. I would love to have access to any kind of trials (we live in France).
Rosie - I have an appointment with my Cardiologist coming up. Due Lp(a) I have had 2 incidents.. the first 4 stents and then another one 2 months ago. Since then I am taking Rosuvastatin 20mg and Ezetimibe 10mg.
This has lowered the LDL to 37 and ApoB to 50. The question for me is due to my high risk should the LDL number be lower than 30 and ApoB lower than 40. If so what medicine changes should be done. I don't want to increase the Statin and so the only choice seems to be adding Bempoidic Acid. Not sure if anyone is taking a cocktail.
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