High lipoprotein (a) genetic

[Kathyboard1]

Anyone have high lipoprotein a, husband been told its genetic, found out after heart attack, he was fit and healthy. Getting our children tested soon.

[EU95PTM]

I’m about to be be tested for lipoprotein (a) and have also been told I’m eligible for genetic testing for FH (familial hyprecholterolemia). I had a heart attack at 51. It may provide the answer as to why this happened to me at a relatively young age. The photo of the letter is fuzzy so I can’t read it. Has your husband been offered any treatment?

[Kathyboard1 in reply to EU95PTM]

They said there is no specific medication for it. Hope you can read this now

[Kathyboard1 in reply to EU95PTM]

Letter

[Kathyboard1]

Letter

Letter

[EU95PTM]

Thank you for reposting the letter 👍. I think there have been a few posts about lipoprotein (a). If you do a search they should come up. It’s interesting that there is no treatment. Did it take long to get the results? For me, I have an identical twin, a brother and two adult children that would all need to be tested if I do have high levels. I already take the maximum dose of statin plus another cholesterol drug called Ezetimibe and my levels are still not optimal.

[Kathyboard1 in reply to EU95PTM]

The results were back in a week. I was getting confused ithat lipoprotein a , was the same as familial h. But having read up on it I don't think it is. Genetic testing opens up a whole can of worms doesn't it, we have young children and adult children. Also if his sisters results come back positive then obviously her children will need a test, then their children. He had a heart attack at 69 and being very fit and the statins he was taking wasn't lowering his cholesterol they decided to do this test. His brother died at 55, sudden heart attack was a commander in the Australian navy, so also very fit. We are slowly piecing things together. My husbands heart attack might have just saved a lot of our family so, in a way, thankful for that. He's on lots of medication since, blood tests every 2 weeks and they keep adjusting it, he's doing fine the cardiac rehab is great. I'll take a photo of his medication

[Kathyboard1]

Meds

Writing

[EU95PTM]

Yes, I understand that lipoprotein (a) and FH are two different things. Lip a was explained to me as a protein that makes the bad cholesterol more sticky and therefore deposits quicker in the arteries. It’s good to know that Lip a test results were back so quick. When I asked my Lipid Consultant about time scales for the FH genetic test, she said results can take 6 months and are often not conclusive. It does indeed open up a can of worms, but knowledge is power and if a family member is also affected at least they would be monitored closely. However, my son is in the armed forces and has said that he wouldn’t want genetic testing as it could end his army career, so he would wait until he leaves.

[Gail1967]

I was diagnosed with elevated LPa following a quadruple heart bypass at the age of 51. Had been running the day before my heart alerted me to fact it wasn’t happy!! Never smoked- moderate drinker- probably ate too many digestive biscuits in my 20’s!!! But otherwise relatively fit & GP had given me an all clear on an over 50 health check 3 months earlier. So I think it’s better to know - more for adult children so they can start on meds etc younger & be aware of the importance of looking after their ❤️

[GnomeHA]

Hi Kathyboard, A really interesting post and some great replies. I too was diagnosed with raised Lipo (a) after an out of the blue HA ( Im late 50s and otherwise fit and active . Diet previously was not a bad one - but current one is even better, with more thought going into intake).15 months after that diagnosis I have recently had a long awaited ( and several times cancelled ) appointment with my local Lipds clinic .

Phone consultation confirmed the fact that there is currently no treatment - its just a case of keeping LDL as low as possible through Diet, exercise and standard post HA meds.

The lipids nurse explained that having raised lipo (a) was a bit like having a velcro coating around the bad cholesterol, making it stickier in the arteries.

My cholesterol levels have actually always been good, but now even better with Rosuvastatins.

I have now also received invites for my adult children to be tested. Not a conversation I look forward too, as it basically will tell them their future is cloudier IF they have the condition.

But, at least they'll have the information amd can make informed decisions.

Won't be mentioning to them untill after summer holidays, as I don't want to muddy any travel insurance waters ( i.e. They would have to disclose they are awaiting tests / results )

[JennyRx]

I have very high lipoprotein a. I had a total 100% blocked RCA and now have two stents. I am on ezetimibe and an injection called Repatha as I can’t take statins as they triggered peripheral neuropathy originally caused by chemo. Luckily haven’t had a HA but my mum had her first one at 53. The Repatha can reduce lp(a) by 25% in some people. I haven’t been retested. But I have to have my LDL down to 1.7. As it now is. The treatment is reduce LDL to 1.8, keep weight down, don’t smoke and exercise a lot. And DONT stress about it as stress is a major cause of HA. Easily said, but easily overlooked as a cause. I did use to belong to a lipoprotein a group but they were mainly in US and they were largely very obsessive about getting tested repeatedly and taking high doses of niacin. My lipidologist said that used to used here but no longer as it didn’t show any reduction in events and caused liver damage. So it wasn’t helpful at all. So decided to follow the advice and get on with living. Having just finished over a year of cancer treatment when I developed angina and needed stents I’ve decided that’s enough of being ‘a patient’ Time to live.

[GnomeHA in reply to JennyRx]

Totally agree JennyRx 👍Live life in the NOW .

We get one go at this life - so need to make the most if it.

Hope you're treatments have all gone well.

[JennyRx in reply to GnomeHA]

All ok here. Following my own advice. Most of the time - just back from a 5 day break in Portugal so a little bit of vinho verdi drunk….

[Vonnie4]

Hi Kathy. I have an interesting story.. Due to high cholesterol levels in my late 40's and after trying unsuccessfully to get the total cholesterol down I finally got diagnosed with FH 4 years ago at 57. No heart disease in either parent, mum still alive at 103 and tested negative for FH as did my sisters. Brother tested positive . My adult children tested negative also. I was put on Rosuvastin and still have on off battle with it due to muscle problems in many body parts. A year after starting the statin, lipid specialist decided it was time to do a test for LP(a). I've no idea why they needed to wait a whole year.

Anyway the results came back as 'abnormal but expected due to FH' so I was offered Ezetimibe to take as well. Took it for 3 months gave me an awful rash, statins continued to cause me unexplained muscoskeletal problems and I went from one specialist to another the last 2 years to find out why I was in so much physical pain that I cried most nights.

Fast forward to Dec 2022. I asked my gp to do some thorough blood tests re the muscle problems, and

he also said they'd do my cholesterol whilst they were about it. I had been off statins for months at this point whilst awaiting a referral back to the Lipid clinic. Knowing this I rather cheekily ask the doctor if they could check my Lp(a) again as I'd not had it done for 3 years.

Imagine my suprise when all the blood tests came back. Cholesterol had gone up as I expected as wasn't on statins at that point but my lp(a) had halved and was now well within the normal limits. Gp had no idea why and more surprisingly when I finally saw lipid specialist 4 weeks ago, she didn't know why either. Said it must have been my hormones that pushed it sky high!!

Now I've done research into Lp(a) and this is normally high if you have genetically high cholesterol and does not change so I'm still totally confused.

A number of recent studies have worryingly suggested that statins can increase Lp(a) so I don't know what to think

Apart from my ldl being high my triglycerides are low and my HDL healthily high. I exercise well, have normal BP and do not smoke. I believe there are other reasons for heart attacks and not just all down to high cholesterol. Does your husband know what his A1c levels are for instance? Has he ever been borderline diabetic at all?

Sorry for the long post but I wanted to share my Lp(a) story as I'm still puzzling over the results.

All the very best going forward for your husband.

[Kathyboard1 in reply to Vonnie4]

Thank you. My hubby is going to ask lipid nurse about Ac1 levels tomorrow and he is going to ask about the injections he may be eligible for. Its all very confusing.

[Vonnie4 in reply to Kathyboard1]

That's great Kathy. realised there was a typo in my original post. I meant Hba1C to check glucose leveks not Ac1 but they would probably know what you meant. Hope all goes well. Yes I agree, totally baffling to us non medics!

[dlowell]

I have a Lp(a) count of 231 nmo1/L. A count over 75 places you at higher risk My cardiologist wants my LDL below 1.0 (which appears to be the current consensus among London-based cardiologists). The new medication which reduces LDL and indirectly Lp(a), and which has been approved by the NH, is Inclisiran made by Novartis; the brand name is Leqvio. It is administered as a subcutaneous injection into the abdomen via a pre-filled syringe of 284mg. After the initial dosage a second dosage is administered after 3 months, followed by a dose every 6 months. It is only available through the NHS if (1) you have had a heart attack / unstable angina / stent / CABG / stroke / PVDand (2) your LDL is 2.6 mol/l or more despite receiving the maximum dose of other treatments to lower blood fat. If you don’t qualify under the NHS you have to get it via a private prescription It can be v expensive - almost £3,000 per syringe but shop around as some pharmacists appear to be able to get it from suppliers at much lower prices. Two other Lp(a) drugs going through FDA trials in the USA are Olpasiran and Pelacarsen which may prove to be even more effective and so worth monitoring. Hope this helps.

[Kathyboard1 in reply to dlowell]

Thank you. I have written all this down for my hubby to ask the lipid nurse tomorrow. Will let you know what is said.

[JennyRx in reply to dlowell]

My lp is 450nmol/l so sneaked into the top(worse) 2%. My lipidologist was going to put me on Inclirisan but wasn’t happy about it - it was only just ok’d by NICE at the time and he wasn’t happy with the lack of real time information- and put me on Repatha. He wants my LDL at 1.7. but not too much lower than that. So there appears to be no consensus amongst lipidologists about what is a safe/good LDL level for lp(a) patients.

[MichaelJH Heart Star]

I asked for this test around a decade ago as my father, his brother and their father had all died prematurely of heart attacks. Having been diagnosed with PAD a couple of years earlier despite a Cholesterol level of 4.2 I was concerned. I was brushed off with "It's just researchy". By the time he retired in 2019 I had lost all confidence in my GP.

[Kathyboard1]

Thank you. My 10 and 11 year old boys have a gp appt tomorrow, the lipid nurse has told my husband they need to get tested and his older children kind of to confirm its genetic as I'm guessing he didn't have a full genetic test ad the results were back in a week, genetics takes months! So on the letter when it says its genetic they must just be assuming it is, I guess. Confusing but maybe that's why they are pushing for the tests, to confirm.

[Turnipgirl]

At one of my old jobs there was a lady there who was slim and still had high cholesterol which goes to show it doesn't discriminate on what size you are!

[Hayley765 in reply to Turnipgirl]

I am 7 stone and very slim x

[pasigal]

Yes, my brother and I do. My son doesn't, we're going to test our daughter soon. My cardiologist is pretty sure that's why we've got CAD, despite being in good health and with good diets.

[declanfm]

Hi Kathy

I have High LPA had a heart attack late 50s despite being very fit.

You are correct that at the moment there are no licensed meds for this in the UK

However I am currently on a clinical trial with Horizon of Pelacarsen. The trial is due to last 4 years and has just passed its 2nd year. Its a double blind test so myself and my cardiologist have no idea whether I'm on the drug or a placebo. I inject myself once a month and have a 3 monthly check up at the hospital. Talking with the doctors and googling Pelacarsen trials they are extremely hopeful that it is very effective in lowering LPA but like all drugs has to go the full course of medical trials.

So hopefully there should effective meds coming within the next couple of years

[Kathyboard1]

The lipid nurse said his lpa was 4.1. I don't think that's the right reading, bloody men, I gave my husband a note as well. Also our 10 and 11 year old don't need to be tested until they are 18. Will still keep them on healthy food though. Asked about the injection and they said one of his tablets is doing the same thing but will look at it in 2 months, they wasn't really sure about it, or if it was available, but are looking into it. Thank you everyone. Also he forgot to ask about the hbac1.

[Hayley765]

I am just starting this journey to.I'm on 80mg Atorvastatin and just started Ezetimbe.

My dad had high cholesterol and died early

Mum had extensive heart treatments and PAD

Both my brother's were in their 30's

My little sis also before 50

I have PAD and now mild CAD

My levels are still to high

[Krissy55]

Who sent you for tests to see if it was genetic ? I have high LPA and waiting for ablation for Afib . Trying to find other posts on LPA on this site but can’t seem to find them?