Lipoprotein a : Hi. Does anyone have... - British Heart Fou...

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Lipoprotein a

Peas23 profile image
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Hi. Does anyone have high lipoptotein A. Any success in reducing it? I'm 52 years old and have been told my coronary artery disease is premature so I was referred by cardio team to the lipid specialists. I was/am in good shape, decent weight/BMI and fitness. I'm now 8 weeks post-CABG x 2 and 7 months post stent after unstable angina which was the first I knew about any of this. Just today I received in the post an interim result from the lipid clinic which says a probable underlying cause is an elevated lipoprotein a. It's 134 nmol/L. My LDL-C was 4.3 before the stent, then after statins and a radical diet change, it was 1.4 in Feb and is now back up to 1.8. I was starting to feel like if I could get over the CABG and keep the LDL-C below 1.8 I might have a fighting chance of getting on top of this bastard of a disease but the lipoprotein A result has knocked me down somewhat as its a separate risk factor I probably can't do much about. A lot of info (and the lipid specialist) says just to keep fit and the LDL-c below 1.8 and that's all you can do pending new treatments coming that are currently in the trial pahse. Other stuff I'm reading online says I can reduce the Lipoprotein A with all manner of supplements and even the very controversial low carb/high fat (ketogenic) diet. I would love to hear from anyone with experience/insights on the lipoprotein a situation.

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Chappychap profile image
Chappychap

Let me just say how much I agree with your approach to dealing with your atherosclerosis. It seems entirely sensible to try and identify the specific issue/s that triggered our heart disease, and then get the metrics for that particular problem back into the safe zone with medication and life style changes.

Like you I was also lucky to have an engaged and inquisitive medical professional in my corner. We're very fortunate, to be supported by doctors who are pointing us towards the key to managing and suppressing our disease.

My own route into heart disease was rising insulin resistance (as revealed by HbA1c tests over several years) so I've tended not to be overly focused on lipids where I test fairly well. However, I'm replying to see if you're familiar with the BHF video series "Live & Ticking"? They did an especially interesting review of their statin and lipid research last year, including the exciting potential of the new drug Inclisiran. The impact this drug has on cholesterol is astonishing. You can see this episode here,

youtube.com/watch?v=om7PnTd...

I came away from this BHF documentary feeling that for people with lipid problems there was truly some real light at the end of the tunnel.

Good luck!

Gail1967 profile image
Gail1967

I too found out about my elevated LPa after cabg x 4 at age 51- was pretty fit & well up to that point!- although now know why I wasn’t able to push my running further!! My latest ldl result was above the 1.4 my cardio doc had suggested I keep it below- which was higher than the last time I tested so having repeat in June. Will then insist on referral to lipidologist as I know there are alternatives to statin & ezetimibe that I currently take despite my GP saying there isn’t!!! It’s frustrating as despite knowing about my LPa I was pretty much told your GP will manage it. They just then look at numbers from blood tests & say it’s normal - which I then challenge when I know they have changed from last time as our normal isn’t normal!!! I don’t believe from all the things I have read you can massively reduce LPa- you are born with a level & it stays pretty much the same- but I’m still learning!

Peas23 profile image
Peas23 in reply toGail1967

Hi Gail. Seems like we’re in a similar situation. Tbh it’s one of the hardest things to accept about this relatively new situation for me knowing there is a risk factor (LP a) that I can’t do anything about. Although there is no ‘accepted’ way to reduce it there are a lot of theories out there. As an experiment I’m on vit c (v high dose) and lysine, Proline and a few other supplements and when I see the lipid specialist in a few months I’m going to ask to check the level again. If it goes down I’ll keep taking the supplements and vitamins if not then I’ll have to wait until one of the new treatments to come online - there are clinical trials currently running for drugs to reduce LP (a) but the specialist tells me we’re 4-5 years away from them being available. Hopefully My arteries last that long!!?

My last LDL-C was 1.8 - up from 1.4 a few months ago. Im starting ezetimbe this week as well as atorvastin 80. The other drug available you might be thinking about is possibly incliseran? It has a completely different way of reducing cholesterol but unless your LDL is above 2.6 (or 2.3?) the NICE guidelines mean you won’t be offered it. Im almost tempted to allow my LDL to go up again just so I can get this. Good luck and I’ll keep you posted.

pasigal profile image
pasigal

Hi Peas23 -- I suspect you and I have very similar health profiles. I do have elevated Lipoprotein A, as does my brother (and I suspect our father had...). (4 stents, cardiac arrest and heart attack in early 50s, despite being in perfect health and a committed endurance athlete...the genetic dice did not fall in my favor, let's put it that way!)

But I, like you, I am still here, and try to be optimistic despite the self-pity and dark thoughts!

I've done a lot of research and while there are some experimental and expensive therapies that might lower L. A levels, as you note, I would not expect them to be in wider use in our lifetimes.

Thus, I'm following a low-cholesterol, low-fat diet and taking anticholesterol medication, keeping my heart as healthy as possible through exercise. My "bad" cholesterol level is quite low; my "good" levels are unfortunately also low, and my cardiologist says it's not possible to increase it meaningfully.

I don't have much -- if any -- faith in supplements, to be honest. My point about every supplement is that if they actually worked, they'd be prescribed. I don't have blind faith in medicine or science, but I do believe in the scientific method.

Chappychap profile image
Chappychap in reply topasigal

"My point about every supplement is that if they actually worked, they'd be prescribed.."

You make some good points, however I'm more ambivalent about supplements. I don't take them regularly, but I am open to the possibility they may help.

The problem with supplements is that they can't be patented, so no drug company will pay the massive costs required for full scale medical trials. Occasionally a charitable fund like the BHF does some test work on supplements, but it's never at the level necessary to qualify for prescription.

There's also some interesting work being done on heart disease and genetics. Indeed the chief scientific advisor to the BHF has said that the next great heart disease breakthrough will likely come from DNA profiling.

The picture that is emerging is that the dividing line between genetics and life style is blurred. Yes, there are genes that dispose carriers towards heart disease, but there are also life style changes that can mitigate this elevated risk. For example, somewhere around 17% of the population carry the APO E3 gene, they have an elevated risk of heart disease and dementia. However, zero alcohol, zero processed foods, and ultra low fat will bring their risk profile back down to that of the general population.

Gillgreen profile image
Gillgreen in reply toChappychap

Chappychap- when you talk low fat are you inferring low saturated fat? The issue with a low fat diet is that one more need to eat more carbs to replace fats - and that is an issue for prediatics like me.

pasigal profile image
pasigal

Excellent points. The nature/nurture debate is ever-present. I suspect it varies for everyone. In my case, I'd say there are very few life-style changes I could make (or could have made) that would have prevented my heart issues. Whereas, had I been known about Lipoprotein A and been put on statins at age 40, it would have almost certainly made a difference. My brother is 2 years younger than I, but fortunately for him had significantly high-enough cholesterol at age 35 that he was put on statins. 15 years later, he has just had a full heart work up, and has some coronary artery disease, but nowhere near the near-total blockage of my LAD, and he and his cardiologist believe that his plaque is much more stable than mine, thanks to the statins.

But if you're, say, an overweight smoker who lives on chips and lager, I think you'd be able to significantly lower your health risks without medication.

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