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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Look up Dr Thomas Dayspring on YouTube. He is a lipidologist and he is fascinating. I think the best interviews are with Dr Gil Carvalho and another with Peter Attia. He said people should attack high cholesterol at the liver AND intestines. If you do one, the other will increase their receptors. I can not take statins, nor Praluent. I am taking Zetia, Nexletol and I added Benecol chocolates. My Dr wants my LDL below 30. I am a bit freaked out myself. My carotids are blocking and I have calcification in my aorta.

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@seroy

Hey there.
Just got my results and my
Lp a is 150 nmol.
Your results were in mg or nmol’s?

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I have 329 nmol. I have had one heart attack at 64. I just started taking Praluent which is a PCSK9 Inhibitor. I am hoping it will bring it down at least 30%. I am crossing my fingers.

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@seroy

Hey there.
Just got my results and my
Lp a is 150 nmol.
Your results were in mg or nmol’s?

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Nmol/L. Now 49 nmol/L. Down 63 lbs. afer 5+ years eating LCHF/keto.

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@whineboy

I don’t believe statins can do anything to reduce Lp(a); given your low HDL, you also might want to make lifesyle changes. I shifted to a low-carb healthy fat diet 3 years ago, my Lp(a) dropped from 92 to 66. Took a year.
Lifestyle changes can improve a range of things, including blood lipid profiles, blood sugar, and weight. I lost 50 lbs. and no longer am prediabetic.
Good luck!

Jump to this post

Hey there.
Just got my results and my
Lp a is 150 nmol.
Your results were in mg or nmol’s?

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Hello, I’m sorry I think I misread your question. I thought you were contemplating whether or not to go away for a long weekend, but your question was that you were concerned that you couldn’t get a hold of a medical professional or cardiologist over a long weekend.
My guess is the long weekend is over and you’ve had a chance to reach out to your medical professionals at this point?

Totally agree you should
Contact your personal care provider, and if you have a cardiologist contact them. If not, you should find a cardiologist. I have a very high CAC score, workout every day exercise, my diet could be better, and when asked by a cardiologist why my CAC score was so high, this might be the answer for the reason.

I’m an agreement with the previous post and that is you should probably have a hard scan to see what the levels of calcium and plaque are in your cardiovascular system.

I know you probably had some time to calm down, but sometimes it takes months. Just realize that what you know today was probably true yesterday and for a while before and you’re still here, so try not to overwhelm yourself. Stress is not good for you.

Sorry for the misunderstanding, and good luck keep us posted

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I would definitely go to see a cardiologist and have them do an arterial calcium scan . But it's probably a good idea to if aspirin doesn't bother you to take a baby aspirin a day. my LP (a) was 101 nmols so slightly out of range on the high side. Both my mom and dad had heart disease and ended up with triple bypasses. I don't know which one carried the Gene I have five brothers and two sisters and I've told them they need to get checked. It took me a couple of months to get in to see a cardiologist he gave me an EKG which came back OK but he wanted to do an arterial calcium scan with a CT and he called me later that day and told me it was high my calcium score was 1253 among four coronary arteries. My left anterior descending had a score of about 600. So he put me on a stress test and did an echocardiogram on me and everything turned out OK. So he told me to take my statin and take a baby aspirin and just watch what I eat. I have never had chest pains or shortness of breath or sweating or lightheadedness or anything so it's kind of really surprising. I had just gone bc i had some abdominal pain and it turned out I had a kidney stone but when they checked me out one thing led to another so I guess it was fortuitous that I have the kidney stone

i tell you what's really frustrating is that when my dad had his triple bypass I was 24 years old and so I started to eat low fat and take exercising seriously so for over 40 years I've been eating low fat and exercising now I'm not an exercise fanatic I don't go out and run five or 10 miles but I'm active every day walk I used to run but not anymore I'm 68 years old and go to the gym and walk and treadmill and bike and it's just really disappointing that you work so hard and you know watch what you eat and you still get CVD . apparently diet and exercise does not lowerLP(a). And the funny thing is I've been asking my primary care physician for the last couple of years several years actually to test me for LP(a) and he would say why ?what for ? we can't do anything about it. there's no medicine to give you and I would tell him well at least I would know so finally I went out and did it on my own when they told me at the hospital that I had an abnormal EKG. . I would recommend to anyone as they get older in their 40s or 50s getting the LP (a) tested. I think it should be part of every physical at least once in your lifetime. My daughter had hers checked and it came back OK and my son is going to have his check this July. there is a nonprofit group called Family heart.org and you can go online and order a free test for LDL and LP(a). You just put a few drops of blood on a little test card and mail it back to them and they'll get you a score in a week or two pretty easy.

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Hello, the way, I understand it is that your Lipo protein levels are somewhat constant through most of your life. And with their being no treatment for it, at least at the moment. Personally, I’m not sure that you can stop living your life because of single blood test. That being said, if you’re having any symptoms of chest pain, shortness of breath or other indications that you may be having an issue, I’m not sure why I would hesitate, But this has to be a personal decision.

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Hello @joce18, I am tagging @elliott1953, @dnward12, @george7856 and @buster11 who all posted in this thread about their experiences with high lipoprotein so they would see your message as well. You also posted in another discussion that you are concerned about traveling for your family reunion.

@joce18 - have you had the conversation with your provider who diagnosed your high lipoprotein about traveling? Did they have any concerns?

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Learned yesterday that mine is also very high. In Canada my measurement is 231 with normal being not more than 100.
Scared also.

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Well, the good news is there are medications that are in development. I also have high levels near 300, and will go for my second meeting at a clinicalstudy tomorrow. I’ve done a little reading and found four other clinical studies that have been going on for a while and shown positive results with few side effects. So help may be on the way.

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