Hi I recently discovered I have moderately high levels of Lipoprotein a which is a genetic and lifelong condition which increases CV risk and the rate of heart disease amd heart attack. Im due to see a cardiologist soon but was wondering if anyone has any experience with high lipoprotein a? Im 50 and in good general health otherwise amd have had no heart symptoms to date. The standard treatment seems to be to go on a statin to lower ldl cholesterol and to offset the added risk from Lipoprotein a.
Mentally Ive found this tricky to deal with as I have a family history of heart disease including my father dying from a heart attack at 67.
Any advice or shared experience or questions welcome!
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JamesG1016
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There are some medications that may help, generally the PCKS9 inhibitors or Inclisiran. These reduce LPa, but have not been licensed for that purpose so I doubt you will get them prescribed unless you qualify for them anyway. There does seem to be some link between PCKS9 and LPa, google will find you research papers on this which may be of interest.
Thanks! I have an appointment with a cardiologist in a week or so so will ask about treatments and other tests eg CAC to see where i am in terms of any CVD. The standard treatment seems to be a statin to lower LDL C to very low levels and doubling down on other risk factors to offset the risk from high Lipo a. I read about Pelcarsen which is in Stage 3 trials and seems to significantly reduce Lipo a, but that wont undo any damage done in prior years and might be a year or two before that is available to the public.
Do you have high Lipo a? Mines 141 Nmol which seems to be in the moderately high but not extremely high range. Luckilly ive found this out at 50 and my other modifiable risk factors have always been low.
I don’t know. Both of my grandfathers died of heart attacks (aged late 50’s and early 60’s) and I had a STEMI at 45, so quite possible. Doctor won’t order LPa test as it is not clinically relevant (because there would be no change to my treatment plan/advice regardless of result). I don’t tolerate statins so am on Inclisiran anyway for lipid management.
You seem to be doing everything you can so put it in the back of your mind before it takes over your life. As my father, his brother and their father all died prematurely of heart attacks I got concerned about the risk I visited my GP. Despite being diagnosed with PAD (Peripheral Arterial Disease) some years earlier he virtually patted me on the back and said I had nothing to worry about as my BP and cholesterol were fine. After doing some research I went back and asked for an Lp(a) blood test to be fobbed off ("It's a researchy thing only used in hospitals"). A few years later I went back again this time with angina. All I got was a referral to the Urgent Chest P:ain Clinic - no ECG - no further blood tests, in fact nothing! I have asked for an Lp(a) test since a number of times but got nowhere. P.S. My total cholesterol before statins was only 4.2!
I wasnt aware of LPa until my results came back but having done some reading around it it is mad that it isnt checked on a standard lipid panel, especiallt where theres family history. Its also a simple one off blood test. 20% of people have it and its a specific risk factor up there with smoking and family history…
Sorry to hear about your family history and health issues. Family history does mess with the head. Im trying to put it in context until i see the cardiologist. The bottom line seems to be it is a risk factor but the risks can be offset/ managed elsewhere to a large degeee in diet and lifestyle, even with high LPa. Im lucky in that Ive not had any health or heart issues to date but id be lying if i said it wasnt a concern.
LP(a) is a peculiar one because there is no current treatment that can control or reduce it. I know there are a few drugs in the pipeline, but thats still in the future.
I have always had genetically high Cholesterol, hence CAD at 47 in LAD. Both my dad and grandad, died of heart issues - so yeah genes not the best. Mentally, can be a struggle at times but in a much better place now than before.
Flipside, given these risk factors - I have completely transformed my lifestyle from food to healthy living. I am in the best shape of my life and more importanyly keeping it up. As far as LP(a) - it could be high, but I am not that bothered because I cant do anything about it anyway. So, why stress about it?
In the Long term, we are all doomed anyway. Enjoy life, lead a healthy lifestyle and rest is up to the omens.
Great that you are taking control of what you can with diet etc. Thats all any of us can do. None of us can change our genes - not yet anyway. Yeah i think its different if someone already has confirmed CVD then theyre higher risk by definition, irrespective of LPa. The main advantage of knowing LPa status is in doubling down on LDL (typically with statins + diet) and other lifestyle factors to offset its impact. Im fortunate at 50 Ive no heart symptoms to date but impossible to know whats going on “under the bonnet” without more tests. My lifestyle is pretty good and other than fanily history I dont have any other risk factors for CVD.
Interestingly, the more Ive read into it, everyone has plaque build up starting more or less from birth. Where it becomes problematic is the rate at which that builds up over someones lifespan. Some people its faster and some people its slower depending on genetics and lifestyle. Theres also a not insignificant element of luck in whether CVD ends up with an event like a HA. It might be higher probability in someone with advanced CVD but its not guaranteed, just as someone with little CVD isnt guranteed not to have an event.
Ive had a couple of weeks for the LPa to sink in and do some of my own research so Im philosophical about it now. Everyone has risks of some sort and for CVD all anyone can do is manage the modifiable risk factors and hope for the best.
Im in two minds whether to get a CAC scan because the LPa already puts me in a higher risk bracket no matter what a CAC scan says and doesnt seem to change the protocol for reducing risk anyway. Part of me would like to know (a lower score would be somewhat reassuring) and part of me thinks theres no point (a higher score might cause stress and doesnt change the plan anyway), Have to discuss that with the cardiologist though…
How did you find out about the CAD if you dont mind me asking? Symptoms? I found out about the LPa just by luck after deciding to do a MOT on my health.
Chest pain, palipitatiins and slight swelling in ankles. From there, I knew something was not right. Had the full set of tests done privately because the NHS wasnt convinced.
Mind you, my CAD is non-obstructive meaning it doesnt cause chest-pain under stress or exertion. Just have to manage the plaque build up. Also, if you do a bit of research - it is not the amount of stenosis that is dangerous but more the type. You can have 20% blockage only, but of the dangerous type, ie soft volatile plaque.
Well done for not giving up after nhs not convinced. Like chest pain and swelling should have been a red flag. I read somewhere over 50% of HAs are due to soft plaque (which doesnt show up on a CAC which only shows calcified plaque). The statins seem to do a good job of stabilising soft and unstable plaque. The positive news seems to be that plaque progression can nowadays be slowed pretty dramatically. Diagnosis is key though.
Thats why CAC score can be meaningless, just tells you there is evidence of calcium deposits, but you can have non calcified plaque with blockage. The irony, the more calcified, the more stable it is.
yeah thats exactly it. I get it might be useful as a general indicator of CVD progression for someone of uncertain risk, but for someone already known to be high risk either through risk factors or events im not sure i see the point. Going to ask the cardiologist is there any clinical need or benefit to it in my case. I suppose if it were particularly bad they might go more aggressive on treatment maybe…
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