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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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Profile picture for whineboy
whineboy | @whineboy | Jan 26, 2024
In reply to @tauceti "Hello @whineboy, My doctor told me that Lp(a) is genetic and can't be reduced with any..." + (show)
Profile picture for tauceti @tauceti

Hello @whineboy, My doctor told me that Lp(a) is genetic and can't be reduced with any diet, lifestyle etc. Further, there are no approved medications yet to reduce it. It looks like you have a different real life experience. I've got a high Lp(a), you gave me hope that it can be reduced.

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@ tauceti - thank you for your kind words, I am flattered to be an inspiration.

Since my original post (Lp(a) at 66 nmol/L), I’ve had two more tests, my Lp(a) continues to decrease, most recently, 52. So, for me, the low-carb program has been beneficial.

One thing to point out - my levels were never near the very high levels some folks on this thread have mentioned. Not sure if my changes would help them.

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tauceti | @tauceti | Jan 26, 2024
In reply to @whineboy "I don’t believe statins can do anything to reduce Lp(a); given your low HDL, you also..." + (show)
Profile picture for whineboy @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!

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Hello @whineboy, My doctor told me that Lp(a) is genetic and can't be reduced with any diet, lifestyle etc. Further, there are no approved medications yet to reduce it. It looks like you have a different real life experience. I've got a high Lp(a), you gave me hope that it can be reduced.

REPLY
1 reply
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peugh314 | @peugh314 | Jan 12, 2024
In reply to @tia50 "Glen- You said absolutely no seed oils. Can you explain?" + (show)
Profile picture for tia50 @tia50

Glen- You said absolutely no seed oils. Can you explain?

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Seed oils cause an increase in inflammation as does olive oil if it is heated beyond its smoke point which is quite low. If heated past the smoke point, some of the olive oil is converted to transfats. Be aware that some of our bodies convert Omega 6 to Omega 3. For all the bad things that I inherited, I did inherit that from somewhere.

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peugh314 | @peugh314 | Jan 12, 2024
In reply to @karukgirl "WELCOME to Mayo Connect @peugh314! I see you have shared a lot of information regarding high..." + (show)
Profile picture for Debra, Volunteer Mentor @karukgirl

WELCOME to Mayo Connect @peugh314! I see you have shared a lot of information regarding high Lipoprotein (a) here with others. From what I know, which honestly isn't much, there is no dietary or exercise program that can help with high levels of Lp (a), but there certainly are no downsides to eating a healthy diet and maintaining an active lifestyle. Lipoprotein apheresis seems like the only approved therapy. Also from what I have read, the Lp (a) test is not part of a routine lipid panel, and therefore many may have this and not know it, so I am glad you brought up some of your insights for others to think about and ask their doctor if they think it is appropriate to test for this. I think we have to be careful when we recommend supplements and such because we are not doctors here, and what is good for one may not be good for another, you know what I mean? As for the Seventh Day Adventist Diet, you certainly do not have to attend the church to find out about their dietary guidelines/restrictions, it is online in many places for others to explore. There has been a 60 year long-term study done on the SDA diet, and they show the benefits of eating clean, plant-based food.
https://www.webmd.com/diet/what-is-the-seventh-day-adventist-diet
Here is a quick read I found from WebMD regarding the SDA diet that may be helpful, and this is just one of many online articles out there. It is not a cure, as you stated, but it certainly can't hurt either! Do you have a history of any of the other risk factors? How did your doctor come to order the test for you?

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So far, I have only had risk factors. My previous Dr.'s PA was trying to be cautious. I wasn't having symptoms.

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peugh314 | @peugh314 | Jan 12, 2024
In reply to @peugh314 "I don't know that anything outside of filtering Lp(a) out of the blood is going to..." + (show)
Profile picture for peugh314 @peugh314

I don't know that anything outside of filtering Lp(a) out of the blood is going to be effective. I did see a study that I thought was actually from Mayo that said that if you got the LDL-C sufficiently low enough that the risk was only slightly higher of issues from high Lp(a). Everyone is different for certain.

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That is definitely my strategy to control what I can and to get plenty of exercise including HIIT and martial arts. I feel so much better after exercise.

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tia50 | @tia50 | Jan 12, 2024
In reply to @karukgirl "WELCOME to Mayo Connect @peugh314! I see you have shared a lot of information regarding high..." + (show)
Profile picture for Debra, Volunteer Mentor @karukgirl

WELCOME to Mayo Connect @peugh314! I see you have shared a lot of information regarding high Lipoprotein (a) here with others. From what I know, which honestly isn't much, there is no dietary or exercise program that can help with high levels of Lp (a), but there certainly are no downsides to eating a healthy diet and maintaining an active lifestyle. Lipoprotein apheresis seems like the only approved therapy. Also from what I have read, the Lp (a) test is not part of a routine lipid panel, and therefore many may have this and not know it, so I am glad you brought up some of your insights for others to think about and ask their doctor if they think it is appropriate to test for this. I think we have to be careful when we recommend supplements and such because we are not doctors here, and what is good for one may not be good for another, you know what I mean? As for the Seventh Day Adventist Diet, you certainly do not have to attend the church to find out about their dietary guidelines/restrictions, it is online in many places for others to explore. There has been a 60 year long-term study done on the SDA diet, and they show the benefits of eating clean, plant-based food.
https://www.webmd.com/diet/what-is-the-seventh-day-adventist-diet
Here is a quick read I found from WebMD regarding the SDA diet that may be helpful, and this is just one of many online articles out there. It is not a cure, as you stated, but it certainly can't hurt either! Do you have a history of any of the other risk factors? How did your doctor come to order the test for you?

Jump to this post

Please! Throw us a bone! I think there are some research studies out there using niacin and vitamin c that show at least mild improvement in lp(a). Of course, ask your Dr. first.

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tia50 | @tia50 | Jan 12, 2024
In reply to @glennose "That study says that statins significantly INCREASE LP(a). Please post accurately" + (show)
Profile picture for glennose @glennose

That study says that statins significantly INCREASE LP(a). Please post accurately

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Glen- You said absolutely no seed oils. Can you explain?

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tia50 | @tia50 | Jan 3, 2024
In reply to @csage1010 "Yes, I am having the most trouble finding a good salad dressing that is made with..." + (show)
Profile picture for csage1010 (Sue) @csage1010

Yes, I am having the most trouble finding a good salad dressing that is made with olive or avocado oil, and I will use it sparingly. You are correct about statins.

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Look at the recipes in The Mastering Diabetes plan. Low fat plant based whole foods.

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peugh314 | @peugh314 | Oct 21, 2023

Mine is pretty bad too. I have started trying to follow the Pauling Protocol. The only thing that the doctors can do is something similar to dialysis called lipid alpheresis. They will first focus on getting your LDL-C levels to optimal levels. My HDLs are worse than yours at around 30. The HDLs will come up with exercise and eating raw onion if you can handle the heartburn from eating half of a raw onion each day. The blood pressure is a critical factor in reducing the risk of Lp(a). I am not a doctor but obsessed with my own situation.

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