Lipoprotein (a) - where to start?

[zegrange]

Hi everyone. I've just discovered this hereditary issue with a very high 233.90 reading nmol/L. I am early in the process of trying to get into a Lipid Clinic / see a specialist, and wondered if there were specific places for good reading, any literature on trials or treatment, or anything else anyone can point me in the direction of. Would be greatly appreciated.

[mjames1]

I would start with a calcium score scan, to get an indication if the lp(a) has translated into any blockages. I'm from the United States, so I don't know what is being offered in this regard in the UK.

I also had a high lp(a) and my calcium score was also high. I ended up with five stents.

You're quite a bit younger. (I'm in my 70's) however, given your lp(a) a calcium score would order to help guide how aggressive treatment might be so you can avoid what happened to me.

Yes, testing your lipids is important but the real acid test is what's going on in your arteries.

Jim

[zegrange in reply to mjames1]

Thank you for the response, it's appreciated. I will add this to the list to discuss with the specialist.

[psethura]

My lpa is 193nmol/l. I had NSTEMI HA with 2 stent 4 months back. . Im 50. My LDLC now is 28mg/dl. My ApoB is 0.47g/l. Key is to bring LDLC and ApoB less than 50 for possible plaque regression. There is inclisiron injection to reduce LDLC but side effect is expected to reduce LPa by 25 to 30%. Currently thwre is no medicine to reduce LPa. Expected may be in 2026 or 2027. For now we have options to bring LDLC down. My family no known history of HA. Still many of us learning about lpa. All the best

[psethura]

btw there are good references to read on lpa jn peterattia reditt forum if im not mistaken

[Rosieapple72]

Hi

There are trials in the UK but these are well underway and it is no longer possible to participate. Information given to me by my consultant suggests the outcomes so far are very favourable, but it is anticipated that drugs will not be available for those eligible until 2026/27. Eligibility criteria has not yet been determined.

I am 65yr old female. My lp(a) level is 451 nmols/l. Had heart attack aged 58 followed by 2 stents. Had cabg aged 64. Recovered well. I take high dosage of statins in addition to Ezetimibe. Very careful about my diet and exercise as much as my body will allow given other issues which also arise from such high lp(a). But… I am here, I am determined and I think I am one of the lucky ones as I given stents and cabg. My job is to look after my heart, my arteries and my one and only kidney until trials are complete and hopefully new medication becomes available. My consultant at Harefield monitors my health. Digestable literature on this subject is limited but great stuff available on you tube which I have found really helpful.

I am unclear about lp(a) levels in other family members but certainly a history of heart disease. My main concern however is my son, so I have encouraged him to have test to determine his lp(a) level.

Take good care of yourself.

[zegrange]

thank you for the reply. Sounds like you are doing all of the right things, I’m in process of adjusting to the realities of those. Finding literature a bit overwhelming. Not sure how to approach my family about it, I know cholesterol an issue with a few of them as well as other heart issues. If I consider how I’m feeling, don’t want to them drop bomb on then and put them in same situation - but also feel it’s right thing to do in sharing. Am already badgering my doctor for referral to lipid clinic and have also engaged with a specialist privately. Trying to get an understanding of the types of testing they might recommend to get a handle on anticipated cost.

[haynatcha]

Hi there, I too have lpa and was not aware of this until 2 years post heart attack and one stent. I was referred to a lipid consultant by cardiologist as I couldn’t tolerate statins and my cholesterol was 5.5. I had a further blood test as lpa is not automatically tested and the result showed mine was high. I’m a female and was 62 when I had heart attack. I am 5ft 4in and weigh 8 and a half stone and follow a healthy diet. My consultant prescribed inclisiran injection which I have once every six months and this has lowered my cholesterol to 2.4. Unfortunately, despite leading a healthy lifestyle and diet there are no meds apart from cholesterol lowering ones that may be of help although I am aware of ongoing trials. Your post is the first I’ve seen on lpa in this group and I wish you well. Hopefully, you won’t wait long for your appointment with the Lipid clinic.

[zegrange in reply to haynatcha]

I was very surprised to learn from my GP that "primary care" blood tests don't test for Lipoprotein (a) - and so they've said that I need to share my private results, and they'll do basic lipid bloods before considering referring me to Lipid Clinic.

[haynatcha in reply to zegrange]

Yes me too. Had my cardiologist not referred me to hospital consultant I would be none the wiser. It was this consultant that arranged the blood test at the hospital.

[Ladylovesmilktray]

My LPa is 339; I am taking Rosuvastatin to lower my cholesterol. I have developed Peripheral Artery Disease with claudication pain when walking and had a stent in my LAD (heart) last year due to a narrowing.

I have regular calls from the Lipid Clinic who are desperately trying to get my cholesterol to acceptable levels , but it’s a struggle. I worry about my health and the fact that the LPa is so high.