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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@loriesco

I am sorry for all of your struggles. I am glad you are Ucsd. I think it’s a great place for innovative medicine when you need it my dad had the worst heart in history and swam three times a week. Watched his diet and at 58 he started having heart attack and had three valves that were blocked at 72. He had four valves that were blocked and it’s 80. He had three each time he was told it was the last surgery, he passed away at 80 almost 88 and he went for a lot of stents and the three bypass surgeries. He took statins and lowered his cholesterol to 169 from 396 and he stayed on Staten very well for 25 years vitamin D we’re all vitamin D , I’ve taken this very seriously and by the grace of God we go right? And we try and help others when we can. Reason that I’m posting primarily is because I hate it when I hear that men are being tested and women aren’t. I read a book on how neglected women are in research and testing and it really infuriated me and so women should use the testing that’s done on medicine in medicine for their own purposes And we need to advocate whatever we have left to make sure women aren’t ignored. I’m taking Tim for my bones and the abdominal swelling is notated in men. Do you think men care women care and all the women are commenting that they have abdominal swelling and there’s no recourse for them. There’s no acknowledgment by the pharmacy and by the medical industry , it’s crazy anyway good luck. It sounds like you have it all handled well!

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It isn’t old… I agree with you…nothing is ever old with CAD and Lp(a). We women react differently to procedures and medications and have not been included in studies. E.g, They have found that women achieve higher plasma levels of beta blockers from same doses given to men, and women experience 100% more edema from Amlodipine than men. I think they are getting better at including us in the trials now…thanks to Jill Biden and her latest initiative for more clinical trials for women.

I am lucky to have mostly women doctors, but they don’t always know the differences. I do a lot of reading and know when to advocate for myself. That is the best we can do for right now…and watch out for each other on blogs when we can!

Stay healthy! We deserve the best.

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@naiviv

Hello. What did you do to keep all those values so great. Are you taking statins? How about the Mediterranean diet? I have been doing this one for quite awhile. Vit C? I started it today even though I eat oranges every morning for a long time since I was a kid. I am 71 now. I exercise 1 hr daily. My values are normal but my Lipo A came out high 357 It was the first time I had this test. By the way I requested it because my cardiologist has never done it. I was just reading about lipids and the Lipo A popped up. I was reading that cardiologists don’t irder it because there is no drug out there for it only 4 are on trials. Anyway I think I am doing the right thing but unfortunately I got the gene. Stay safe and healthy. Happy 4th of July. Vivian N.

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naiviv:

Yes, I take 20mg of Crestor (Rosuvastatin) daily. It works well and has no side effects at all for me. It lowers my LDL from 160 to 70. An LDL of 70 or lower is the level that cardiologists will strive to achieve for people with high LP(a).

My normal A1c, BMI and blood pressure takes a lot of effort with sensible diet and exercise. Those three risk factors are controllable.

I tried high-dose vitamin C years ago along with the Linus Pauling protocol and it had absolutely no effect whatsoever other than diarrhea 😂.

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Hi! My LPA was 460 nmol/L. Cardiac calcium score was over 750 with the majority being in the LDA Aka widow maker. Family history of fatal MIs, I have 2 cardiac stents now. I was lucky and I did not suffer a MI.
I’m 58 in good health, normal BMI, vegetarian, active… probably the reason I’m still around.
LDL hovers at 70. Though my docs want it at 55. I believe the AHA suggests that as well with LPA.
Sadly I can’t tolerate statins. I take a PCSK 9 inhibitor.
Hopeful for the meds to come out (forgot the trial name) next year.
Keep the faith!

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@wynstermom

Hi! My LPA was 460 nmol/L. Cardiac calcium score was over 750 with the majority being in the LDA Aka widow maker. Family history of fatal MIs, I have 2 cardiac stents now. I was lucky and I did not suffer a MI.
I’m 58 in good health, normal BMI, vegetarian, active… probably the reason I’m still around.
LDL hovers at 70. Though my docs want it at 55. I believe the AHA suggests that as well with LPA.
Sadly I can’t tolerate statins. I take a PCSK 9 inhibitor.
Hopeful for the meds to come out (forgot the trial name) next year.
Keep the faith!

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If I didn’t reply already here I did somewhere else, but I will say it again. I can’t take statins Either so I asked for the LEVQIO. I also can’t do gluten or lactose and I can’t remember if that’s what qualified me for the Le Vecchio but it is awesome. Awesome. Awesome awesome. Dramatically changed my cholesterol and all its components in three months, the LPa might take longer to reverse itself as you get kind of a dump in your bloodstream as it loosens and exits your body on my second or third LP test after starting the LEVQIO I am now changing in a positive direction and lowering my LPa! good luck eat a lot of salmon and little fish in cans!.

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@glennose

Statins have been shown to increase LP(a). Things that reduce it are: keto or very low carb eating and eating only 8 hours a day and fasting 16 hours a day, high dose niacin, high dose vitamin c and absolutely no seed oils.

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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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Did you figure out anything for lowering your LPA?

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My lipoprotein was high despite best efforts re diet and exercise etc. and I asked for a LPa test. The results showed that my situation was genetic and I would need to take statins to reduce it. So far it’s working, gradual introduction so the amount didn’t cause any side effects while adjusting to the medication. Have you had the LPa test?

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My Lp(a is 559.9 nmol/l.
Yeah, I’m very concerned.😟 Tried to get into a clinical trial but although I had the highest level seen by the Study office, I was not accepted as not had a coronary or vascular episode…yet.

I am being referred to a new cardiology lipid clinic specializing in Lp(a). They are testing and creating a database of people with Lp(a). Not much they can do though for me though as at 78 my cholesterol levels are relatively stable, just on a low dose statin. Normal weight, healthy diet. physically fit. Quit smoking 10 years ago.
I’m looking for another clinical trial until FDA approves an Rx in final testing. Estimated 2-3 years.

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@valcie

My Lp(a is 559.9 nmol/l.
Yeah, I’m very concerned.😟 Tried to get into a clinical trial but although I had the highest level seen by the Study office, I was not accepted as not had a coronary or vascular episode…yet.

I am being referred to a new cardiology lipid clinic specializing in Lp(a). They are testing and creating a database of people with Lp(a). Not much they can do though for me though as at 78 my cholesterol levels are relatively stable, just on a low dose statin. Normal weight, healthy diet. physically fit. Quit smoking 10 years ago.
I’m looking for another clinical trial until FDA approves an Rx in final testing. Estimated 2-3 years.

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It is scary to find out problems in blood. I don't have elevated LP(a) but have researched it a bit since I have a variety of other lipid things going on. It is so good that you are heading to someone specializing in the area you need, and that you are understanding it is a serious risk factor. And, you're rocking your lifestyle. Yay for you!

I have learned a couple things that I hope are reassuring for you. There are a couple of different measurements used for LP(a) making it important to know which scale to look at. The American Heart Association's webpage says high is 50 mg/dL or 125 nmols/L. My LP(a) is 8 mg/dL and I have a friend who has results of over 1,000 mg/dL.

Also, 20-30% of the population has concerning numbers. I am certainly not trying to encourage you to not take this seriously. It is a serious risk factor and we live in an exciting time that modern medicine understands this and therapies are becoming available to address it. I guess I am just trying to provide a bit of scope to what I have learned. It's a marathon you're entering and not a death sentence.

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@jlharsh

It is scary to find out problems in blood. I don't have elevated LP(a) but have researched it a bit since I have a variety of other lipid things going on. It is so good that you are heading to someone specializing in the area you need, and that you are understanding it is a serious risk factor. And, you're rocking your lifestyle. Yay for you!

I have learned a couple things that I hope are reassuring for you. There are a couple of different measurements used for LP(a) making it important to know which scale to look at. The American Heart Association's webpage says high is 50 mg/dL or 125 nmols/L. My LP(a) is 8 mg/dL and I have a friend who has results of over 1,000 mg/dL.

Also, 20-30% of the population has concerning numbers. I am certainly not trying to encourage you to not take this seriously. It is a serious risk factor and we live in an exciting time that modern medicine understands this and therapies are becoming available to address it. I guess I am just trying to provide a bit of scope to what I have learned. It's a marathon you're entering and not a death sentence.

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Yes the measurements are confusing as it is not exact to convert mg/dl to nmol/l

My test was 260.35mg/dl or the most used by worldwide researchers is 559.9nmol.l

I still haven’t see higher numbers that those except for your comment of 1,000. Although I sympathize with that person, it comforts me that numbers could be much higher without mortality😊

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