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

Posted by csage1010 (Sue) @csage1010, Feb 21, 2022

Hi! I just found out that I have an extremely high lipoprotein (a) of 515 nmol/L. I'm terrified; it's that high. I'm 58 years old and my total cholesterol is 212. My LDL is 141, and my HDL is just 40. My cholesterol/HDL ratio is 5.3. Of course it's a long weekend and I may not be able to reach my doctor tomorrow. I have watched a couple of informational sessions online from various doctors discussing elevated LP(a), but no one mentions anything close to how high mine is. Is there anyone else out there with severely elevated Lp(a)? Thanking you in advance. Sue M.

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amb8548 | @amb8548 | 20 minutes ago
In reply to @dkern "No seed oils? Does that include chia seeds, hemp seeds, flax seeds ground or whole? My..." + (show)
Profile picture for dkern @dkern

No seed oils? Does that include chia seeds, hemp seeds, flax seeds ground or whole? My lipoprotein a is 156 and everything else well in normal range

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@dkern - I believe the actually SEEDS are good for you. It's the hyper-processed seed oils like Canola that get you.

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mztaylor | @mztaylor | 5 hours ago

Yes. Mine is over 400. It explains a lot of family history. Only learned when I was 71. After quad bypass and then occlusion again LAD needing stent. Unsettling, scary. But my doctor was quick to work on what we can control. Keeping all other values super low. Repatha a gift. Am gratified about the new recommendations for early universal testing.

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betsya | @betsya | 16 hours ago
In reply to @muds "Hi everyone, I am 37 Years old I recently learned about Lipoprotein(a) [Lp(a)] and ApoB. They..." + (show)
Profile picture for muds @muds

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.

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@muds
Your APO B can often be lowered with lifestyle changes. Start by changing your diet and exercise habits. Cut back on saturated fats and processed foods. Use avocado oil instead of butter, eat plenty of green vegetables, fish, beans, and whole foods. If you eat eggs, consider using mostly egg whites. Avoid smoking and alcohol. Skip sugary foods and drinks, and get your sweetness from fruit instead.

Exercise is important too. Try to take a brisk walk every day and stay active. Even 30–45 minutes of walking at a good pace can help. If you're overweight, losing even a modest amount of weight can improve your cholesterol numbers and ApoB.

You should take a statin. The main focus should be lowering your ApoB and LDL. ApoB particles carry cholesterol through the bloodstream and into the artery wall, so reducing ApoB and LDL can help lower your risk of plaque buildup and heart disease.

Two years ago, I found out my Lp(a) was 600. My doctor almost fell off his chair. There is really nothing I can do to lower that number enough, so I focus on lowering what I can control. My
APO B was 150 and is now 62. My LDL was 190 and is now 48. I take 20 mg of Crestor and get a Leqvio shot twice a year. I also changed my diet. I never drank or smoked, but I did love cake and bread. If I can make these changes and improve my numbers, you can too.

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alana924 | @alana924 | 21 hours ago
In reply to @hassie1 "@alana924 Have you seen the negative comments from patients on REPATHA? Very horrifying." + (show)
Profile picture for hassie1 @hassie1

@alana924 Have you seen the negative comments from patients on REPATHA?
Very horrifying.

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@hassie1 …yes…I was scared to death but I knew I had to be on it. Luckily I have not had any issues…I have taken three shots so far. My brother was also on it and he had to stop…he had a constant cold.

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Marta | @interest | 1 day ago
In reply to @muds "Hi everyone, I am 37 Years old I recently learned about Lipoprotein(a) [Lp(a)] and ApoB. They..." + (show)
Profile picture for muds @muds

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.

Jump to this post

@muds Hello, I was in similar situation and I consulted with a cardiologist who’s treatment I follow and reached a successful point to lower the LDL to 60.
I was given a statin and its dosage was increased until reaching a desired LDL.
Was told Ezetimibe was unnecessary since the statin worked.
Yes, I had an echocardiogram, eat healthy and exercise.
Follow the cardiologist’s recommendation and you’ll get there.

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hassie1 | @hassie1 | 1 day ago
In reply to @alana924 "@muds …I also recently found out I have very high LPa…mine is 250. Luckily at 50..." + (show)
Profile picture for alana924 @alana924

@muds …I also recently found out I have very high LPa…mine is 250. Luckily at 50 my GP started me on a statin because of family history. I have always been able to keep all of my cholesterol numbers in control. I thought because of this…and always eating healthy and exercising that I would be fine…..but nooooo. I had a heart attack in October and had 5 blockages. I received two stents. My message to you is be very aggressive with whatever recommendations your doctors give you. I wish my doctors had known as much 20 years ago as they do now. I recently was on ezetimibe and now am on Repatha. Luckily there are 4 drugs in final stages of approval for high LPa. Getting another opinion is a great idea. Good luck.

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@alana924 Have you seen the negative comments from patients on REPATHA?
Very horrifying.

REPLY
1 reply
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alana924 | @alana924 | 1 day ago
In reply to @muds "@jlharsh Thank you so much for taking the time to share your experience. It is very..." + (show)
Profile picture for muds @muds

@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.

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@muds …I also recently found out I have very high LPa…mine is 250. Luckily at 50 my GP started me on a statin because of family history. I have always been able to keep all of my cholesterol numbers in control. I thought because of this…and always eating healthy and exercising that I would be fine…..but nooooo. I had a heart attack in October and had 5 blockages. I received two stents. My message to you is be very aggressive with whatever recommendations your doctors give you. I wish my doctors had known as much 20 years ago as they do now. I recently was on ezetimibe and now am on Repatha. Luckily there are 4 drugs in final stages of approval for high LPa. Getting another opinion is a great idea. Good luck.

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rogerwriter | @rogerwriter | 1 day ago
In reply to @betsya "@rogerwriter I understand that Crestor may raise Lp(a) slightly in some people, but with my Lp(a)..." + (show)
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@rogerwriter
I understand that Crestor may raise Lp(a) slightly in some people, but with my Lp(a) around 600, that's not what I'm focused on. My goal is to get my LDL as low as possible. I've worked with my doctor for two years and have my LDL down to 48.

From my perspective, Lp(a) is going to be there whether I like it or not. What I can control is the amount of LDL cholesterol available to be carried into my arteries. If lowering my LDL reduces the chance of plaque building up in my LAD—the so-called widow-maker artery—then that's where I want to put my effort. Until there is a better treatment for Lp(a), keeping my LDL very low is the best strategy I have.

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@betsya Merk’s new cholesterol pill is due out early in 2027.

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betsya | @betsya | 1 day ago
In reply to @rogerwriter "@betsya Crestor reduces LDL, but there is fairly strong evidence that it INCREASES LP (a)" + (show)
Profile picture for rogerwriter @rogerwriter

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

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@rogerwriter
I understand that Crestor may raise Lp(a) slightly in some people, but with my Lp(a) around 600, that's not what I'm focused on. My goal is to get my LDL as low as possible. I've worked with my doctor for two years and have my LDL down to 48.

From my perspective, Lp(a) is going to be there whether I like it or not. What I can control is the amount of LDL cholesterol available to be carried into my arteries. If lowering my LDL reduces the chance of plaque building up in my LAD—the so-called widow-maker artery—then that's where I want to put my effort. Until there is a better treatment for Lp(a), keeping my LDL very low is the best strategy I have.

REPLY
1 reply
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avt | @avt | 1 day ago

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.

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