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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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elle7 | @elle7 | 11 hours ago

I have lp(a) of 628 nmol/dl. Found out 2 years ago and have had to search hard for treatment. 1st cardiologist said wait until you are at least 50% blocked and then we can do a stint. Had to search hard to be listened to and get plan of action. It can increase after menopause and HRT can help. I am on statins and zetia. I pay out of pocket for CIMT each year to monitor carotid artery plaque. I will get a pcsk9 inhibitor if it gets anywhere near 50% blocked. Lipidologists say because I am old if lp(a) was going to kill me I would be gone by now so did not give me pcsk9 inhibitors. I will find someone who will give me them if I get anywhere near 50% come hell or high water and how old I am. My worry is it has increased after menopause and will cause rapid plaque formations but they were men. I also found out I have osteoporosis per DXA same week as lp(a) and that was another journey of stupid in the health care system. Get a REMS Echolite test to compare to DXA if you get this chronic condition. No wonder health care system is costly…more expensive to let me live 20 years drooling in wheelchair rather than get ahead of chronic conditions.

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bitsygirl | @bitsygirl | 37 minutes ago
In reply to @elle7 "I have lp(a) of 628 nmol/dl. Found out 2 years ago and have had to search..." + (show)
Profile picture for elle7 @elle7

I have lp(a) of 628 nmol/dl. Found out 2 years ago and have had to search hard for treatment. 1st cardiologist said wait until you are at least 50% blocked and then we can do a stint. Had to search hard to be listened to and get plan of action. It can increase after menopause and HRT can help. I am on statins and zetia. I pay out of pocket for CIMT each year to monitor carotid artery plaque. I will get a pcsk9 inhibitor if it gets anywhere near 50% blocked. Lipidologists say because I am old if lp(a) was going to kill me I would be gone by now so did not give me pcsk9 inhibitors. I will find someone who will give me them if I get anywhere near 50% come hell or high water and how old I am. My worry is it has increased after menopause and will cause rapid plaque formations but they were men. I also found out I have osteoporosis per DXA same week as lp(a) and that was another journey of stupid in the health care system. Get a REMS Echolite test to compare to DXA if you get this chronic condition. No wonder health care system is costly…more expensive to let me live 20 years drooling in wheelchair rather than get ahead of chronic conditions.

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@elle7 , how do you get a CIMT? Can you arrange it yourself or is a physician involved?

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