Anyone else out there with extremely high lipoprotein (a)?

Well , welcome to my world! My Lp(a) is 584 mol/L- Most of the people I have encountered with elevated Lp(a) were below 300-
I am also on Repatha and my Lp(a) has gone down to 369-not great but better than being in the 99th percentile! I am also on Rosuvastatin and ezetimibe. My LDL has to be below 1mmol/L (metric)
Conversion: LDL cholesterol: 1 mmol/L = 38.67 mg/dL
Keep me informed!

@tamig
I'm currently taking 20 mg of Crestor. I was on Repatha for a while, but my new insurance stopped covering it. While I was taking it, my Lp(a) only dropped to about 535, so not a huge change. I also developed swollen glands and lymph nodes, which may have been a side effect.

I've now had my second Leqvio injection. So far I haven't had any side effects, but I haven't rechecked my Lp(a) yet.

One thing I'd suggest is checking your ApoB level as well. That's another very important number to follow, and it's something my doctor pays close attention to.

I've also changed my eating habits quite a bit. While a healthy diet is important, it really doesn't seem to have much effect on Lp(a), since Lp(a) is mostly genetic.

For what it's worth, my mother is 88, has an Lp(a) around 435, and has never had any heart problems. So high Lp(a) doesn't necessarily mean you'll have cardiovascular disease, but it's definitely something worth monitoring and managing with your doctor.

@tamig: AI input I received suggested that taking tocotrienols together with other Lp (a) meds could result in further lowering of Lp (a), in instances where the reduction of Lp (a) is by a different path.

This may be an option in your case, but you should only do so with guidance from a physician.

Hi everyone,
I am 37 Years old
I recently learned about Lipoprotein(a) [Lp(a)] and ApoB. They were included in the list of tests during a routine blood test, and I decided to do them on my own without really knowing much about them.

My results came back as:

- Total Cholesterol: 219.2 mg/dL
- LDL-C: 167 mg/dL
- HDL-C: 29 mg/dL
- ApoB: 208 mg/dL
- Lp(a): 83.82 mg/dL

After seeing these results, I became quite concerned. I sent the reports to my GP, who said my levels were very high and recommended:

- Crestor (rosuvastatin) 10 mg daily
- Ezetimibe 10 mg daily
- Echocardiogram
- Exercise stress ECG test

I then consulted a cardiologist. He explained that Lp(a) is largely genetic and asked about my family history. He also said that risk assessment should consider other factors such as diabetes, blood pressure, symptoms, and overall cardiovascular risk. Since my blood pressure, blood sugar, echocardiogram, and stress test were all normal, he recommended:

- Crestor (rosuvastatin) 10 mg daily only
- Repeat blood tests in 3 months
- Reassess at that time and potentially consider CT coronary angiography if needed

The cardiologist advised against starting ezetimibe immediately, whereas my GP feels I should take both medications now in order to lower my LDL faster. The GP's target is total cholesterol below 180 mg/dL and LDL below 50 mg/dL.

I'm feeling confused because I'm receiving different advice from two doctors. Has anyone been in a similar situation, particularly with elevated Lp(a) and ApoB? Did your doctor start with a statin alone first, or use a statin plus ezetimibe from the beginning?

I understand that medical advice online cannot replace my doctors' recommendations, but I would appreciate hearing about others' experiences and how their specialists approached treatment.

Thank you.

Welcome, @muds. I am glad to see you are comfortable posting here. You will no doubt find others providing good feedback. I am also glad to see your doctors making it clear that while your lifestyle, diet and exercise are super important you are going to need medication to help.

I have genetically high cholesterol (APOB like you mention). LP(a) does run in my family but mine is not elevated so I am familiar with it. I have treated with statins since my 20’s and tried darn near every option including a blood treatment every other week to clean the blood when medications do not work. Finally, after hitting a crisis I ended up at Mayo Clinic a few years ago and have care that has figured out exactly how my body uniquely works, instead of the more spray-and-pray approach. I am 60 now and finally have my cholesterol in a good place with a combination of therapies.

I say all this to encourage you to of course, take this seriously. Also, coming from someone who has a lot to say about what not to do (from experience) it is critical that you work closely with your providers, move at a good pace but don’t rush treatment.

To me, it sounds like you have two good doctors. Your primary seems to be encouraging you to take this seriously and understands the need to get your numbers under control, that this will not happen with a single drug. Your cardiologist is thinking the same thing and probably has more experience treating aggressively and knows the importance to introduce one drug at a time. They both sound like keepers to keep talking to.

Mayo Clinic Cardiology Continuing Medical Education put out a podcast helpful to understand current information about treating. Something to keep in mind, more isn’t not necessarily better. Adirect link to the podcast is here:
- Mayo Clinic Podcast, Statin Myopathy (11 minutes)
https://cardiovascularcmemayoclinic.podbean.com/e/statin-myopathy/
Do you have confidence in the doctors helping you? How are you feeling, emotionally about all of your new information?

@jlharsh Thank you so much for taking the time to share your experience. It is very reassuring to hear from someone who has been managing genetically elevated cholesterol for so many years and has gone through various treatment options.

Yes, I do have confidence in both doctors. My cardiologist explained things in a way that made sense to me, and my GP has been very proactive in making sure I take this seriously. That said, because all of this is so new to me, I have also booked an appointment with another cardiologist who was recommended by my GP, just to get another opinion and make sure I fully understand the best path forward.

To be honest, I am still processing all of this information. Until now, I had only ever done standard lipid panels and had never heard of Lp(a) or ApoB. Seeing those results and then learning what they could mean has been quite overwhelming.

I really appreciate your encouragement and perspective. It helps to hear from someone who has successfully navigated this journey and reminds me that this is something that can be managed with the right care and treatment.

@betsya Crestor reduces LDL, but there is fairly strong evidence that it INCREASES LP (a)

@muds
Getting APOB tested means your doctors are digging into the weeds a bit more and I am encouraged wright along with you. I love your approach. I think it will serve you well.

I want to stay up to date with your journey so I hope you come back and provide updates. Others coming behind you will also benefit from reading about your experience. Absolutely tag me (@jlharsh) when you want to be sure I see a comment. Doing this sends me an email.

I hope the podcast provides some good foundational information that’s when you have more conversations with your doctors. The guest, Dr. Kopecky from Mayo is the one that addressed my situation.

So what next, and what is your timeframe?

I'm age 59 and a SCAD (spontaneous Coronary Artery dissection)/heart attack survivor at age 46. Otherwise very healthy. My LDL has been increasing but not needing to use Statins. THEN I had my LPa checked and it is extremely high.
As others have noted, that score is genetic, so though I do all the exercise, eating well, sleeping well that I can reasonably can, it will most likely stay the same or only increase as I age.

Here is my query but I have not yet had any info and may perhaps have to reach back out to the Mayo doctors I saw 13 years ago as no one in my area knows this info.: My GenPractioner suggested I look into Statins but acknoweledges she knows nothing about SCADS. I do not currently need/am under a care of a cardiologist, but those I had seen locally in the past did not have much info. on SCAD that I couldn't get from my membership in SCAD/FMD memberships.
At one time the Mayo had put out a study result showing that Statins were Contraindicated for those that had suffered a SCAD. I am wondering if there has been any other research or protocols in the past 10 years that anyone has heard about related to SCAD patients and statins.

If there is more info out there, it will help inform me as to whether I would want to pursue statins as a 'hedge' against my high LPa score.
Thank you in advance for anyone with knowledge of SCAD /Statin or suggestions for research/professionals that may have.