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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@csage1010

I am thinking of doing a vegan, low fructose, very low fat diet. There are a few well known (and one really reputable ) doctors that advocate for this. One is Dean Ornish, the others are Caldwell Esselstyn and Neal Barnard. I think I feel more comfortable with that, but I meet with the lipid specialist in one month. You are correct, statins do nothing for Lp(a), except reduce your other risk factors. Appreciate your sharing your success story!

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My LP a came in at 283. I had already shifted to a mostly plant based diet based on Dr. Esselstyn's book since July 2023. I have an article from another source that if you are eating a diet as you mention above, stay active and get exercise, the extremely high Lp a risks are relatively minor. The other key seems to be to check you "high Sensitivity C-Reactive Protein" and if it is low, again, the risks seem much less if not very low. I am still researching to learn more that I can do and will try to share any information I find with you. I too am looking for help. My cardiologist was of little help since their is no pharma treatment yet approved that is practical for me, so far. Several clinical trials are in progress but not expected to be approved until 2025 or later.

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I'm not a doctor, but with total cholesterol over 200 and LDL at 141, my understanding is that you are at high risk. You should be looking at total cholesterol in the 150 range and LDL, for the "normal" population at under 100; I would think based on other risk factors yours should be under 70. If you are at a higher risk, then LDL needs to be under 50. Even if you moved to a perfect diet, weight, and exercise, you're not going to get those numbers without drugs. Takes me 3 (statin, etezimibe, repatha) to get there. Also, as noted above, the high sensitive c-reactive protein test is another good place for your doctor to assess risk.

The Repatha injection seems to be lowering Lp(a) for me and others here, but it's not the primary use. For me, it lowered my LDL from 109 to 27 and total cholesterol from 175 to 87.

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@doddr

My LP a came in at 283. I had already shifted to a mostly plant based diet based on Dr. Esselstyn's book since July 2023. I have an article from another source that if you are eating a diet as you mention above, stay active and get exercise, the extremely high Lp a risks are relatively minor. The other key seems to be to check you "high Sensitivity C-Reactive Protein" and if it is low, again, the risks seem much less if not very low. I am still researching to learn more that I can do and will try to share any information I find with you. I too am looking for help. My cardiologist was of little help since their is no pharma treatment yet approved that is practical for me, so far. Several clinical trials are in progress but not expected to be approved until 2025 or later.

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there are some clinical trials open for participation in this area if you are interested. Go to clinicaltrials.gov and filter for Lp (a) to find them

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@agb

I'm not a doctor, but with total cholesterol over 200 and LDL at 141, my understanding is that you are at high risk. You should be looking at total cholesterol in the 150 range and LDL, for the "normal" population at under 100; I would think based on other risk factors yours should be under 70. If you are at a higher risk, then LDL needs to be under 50. Even if you moved to a perfect diet, weight, and exercise, you're not going to get those numbers without drugs. Takes me 3 (statin, etezimibe, repatha) to get there. Also, as noted above, the high sensitive c-reactive protein test is another good place for your doctor to assess risk.

The Repatha injection seems to be lowering Lp(a) for me and others here, but it's not the primary use. For me, it lowered my LDL from 109 to 27 and total cholesterol from 175 to 87.

Jump to this post

My husband’s cardiologist prescribed Repatha for his high LPA, was 270 and is now 160 after 2 injections.
We are fighting for more injections to pay, with our insurance, $700 for 4 injections.
The doctor is trying to help us with statements,
Until now, it doesn’t work 🤷‍♀️

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@csage1010

I am thinking of doing a vegan, low fructose, very low fat diet. There are a few well known (and one really reputable ) doctors that advocate for this. One is Dean Ornish, the others are Caldwell Esselstyn and Neal Barnard. I think I feel more comfortable with that, but I meet with the lipid specialist in one month. You are correct, statins do nothing for Lp(a), except reduce your other risk factors. Appreciate your sharing your success story!

Jump to this post

I too have a high Lp a of 283 nmol/L and already have low overall cholestrol using statins. My wife and I have shifted to a mostly plant based diet with some salmon/shrimp/tuna occasionally. After a short time my cholesterol went down some more and I lost 10 pounds without trying. Given that LP a is genetic there is little one can do except embrace a more healthy lifestyle (be active and exercise) and a very careful diet. I am contacting family members and recommending they get checked as well. We avoid sugar, seed oils, most meats and dairy products and only a small amount of good fats. We eat only whole grains with a low fat content. Eating out and traveling is a huge challenge. My wife has chronic kidney disease and the diet increased her eGFR almost 50% in just a few weeks on the diet. For us, Fast Food is poison. Often, even the vegan foods have lots of added seed oil. However, We found the diet to be easier that we thought possible. Hopefully, the clinical trials to lower Lp a will soon be sucessful and approved.

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@csage1010

Hi, thank you, that was a very helpful video. I don’t get to meet with the lipid specialist for another month. My primary has started me on a statin and baby aspirin in the meantime.

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Hi, I have 329.1 high lipoproteinA. I was on 10mg statin and had a RCA stemi heart attack 3 months ago. I was put on 80 mg statin after heart attack and now going to start just 40mg. I was wondering how much statins they put you on? My Cholesterol was not high. I had been a vegan for 5 yrs before this happened. I am a 65 year old female. We have hypercholesterolemia in my family so I watched my cholesterol. I did not know about my high LipoproteinA until 1 month and 9 days before I had a heart attack. It was checked because I had an abnormal EKG. They should have sent me to a Cardiac doctor but they didn't. So, now that I know I was curious as to how much statins they give because of high LipoproteinA. I also had a low HDL of 45 but now it is 52. It had been being 56 before. I also take an aspirin now along with Metaporlol succinate25 and 2xday Brilinta 90mg. and the 40 Atorvastatin.

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@rainerhans

My husband’s cardiologist prescribed Repatha for his high LPA, was 270 and is now 160 after 2 injections.
We are fighting for more injections to pay, with our insurance, $700 for 4 injections.
The doctor is trying to help us with statements,
Until now, it doesn’t work 🤷‍♀️

Jump to this post

If you have not done this already, see if a Repatha discount card will help. It comes from Amgen directly and may offer you a discount. I was paying $50 each box of 2 with my insurance at a local pharmacy, and now that I've moved to the mail order world, I'm paying $5/box of two, including FedEx shipping.

Don't get me started on how I think the insurance industry and pharmacy benefit managers are scamming the public.

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@agb

If you have not done this already, see if a Repatha discount card will help. It comes from Amgen directly and may offer you a discount. I was paying $50 each box of 2 with my insurance at a local pharmacy, and now that I've moved to the mail order world, I'm paying $5/box of two, including FedEx shipping.

Don't get me started on how I think the insurance industry and pharmacy benefit managers are scamming the public.

Jump to this post

Thank you,
We have Medicare, we can’t enroll.

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@agb

I'm not a doctor, but with total cholesterol over 200 and LDL at 141, my understanding is that you are at high risk. You should be looking at total cholesterol in the 150 range and LDL, for the "normal" population at under 100; I would think based on other risk factors yours should be under 70. If you are at a higher risk, then LDL needs to be under 50. Even if you moved to a perfect diet, weight, and exercise, you're not going to get those numbers without drugs. Takes me 3 (statin, etezimibe, repatha) to get there. Also, as noted above, the high sensitive c-reactive protein test is another good place for your doctor to assess risk.

The Repatha injection seems to be lowering Lp(a) for me and others here, but it's not the primary use. For me, it lowered my LDL from 109 to 27 and total cholesterol from 175 to 87.

Jump to this post

Can you tell me more about Repatha? Your lipid numbers amazing now. Have you had an lp(a) retest?

REPLY
@nansea2

Hi, I have 329.1 high lipoproteinA. I was on 10mg statin and had a RCA stemi heart attack 3 months ago. I was put on 80 mg statin after heart attack and now going to start just 40mg. I was wondering how much statins they put you on? My Cholesterol was not high. I had been a vegan for 5 yrs before this happened. I am a 65 year old female. We have hypercholesterolemia in my family so I watched my cholesterol. I did not know about my high LipoproteinA until 1 month and 9 days before I had a heart attack. It was checked because I had an abnormal EKG. They should have sent me to a Cardiac doctor but they didn't. So, now that I know I was curious as to how much statins they give because of high LipoproteinA. I also had a low HDL of 45 but now it is 52. It had been being 56 before. I also take an aspirin now along with Metaporlol succinate25 and 2xday Brilinta 90mg. and the 40 Atorvastatin.

Jump to this post

What I have read is that statins can increase lp(a) and also FBG. Am I right or wrong on this?

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