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Anyone else out there with extremely high lipoprotein (a)?
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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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.
@elle7 , how do you get a CIMT? Can you arrange it yourself or is a physician involved?
@elle7 my husband had LP(a) 940. Doctors had to do open heart surgery for him and he is absolutely fine since than . Doctor suggested stenting does not help with LP(a) as the stent will be covered with plaque soon so this was the only option . Hope it helps
@bitsygirl
@elle7
I googled CIMT and found 2 places near Peoria IL that does them. I went with The Cure Center in Springfield IL and cost was $199 covered by insurance 1st year but not second year. If you are in city it should be easier to find and no prescription needed. CIMT Report showed soft medium and hard plaque in carotid artery as well as thickness so more than just hard plaque like CT scan. I plan to get one yearly to see if it gets worse and stay ahead of it. Right now since I am 65 they gave me zetia and rosuvastatin and LDL is lowest ever in my life at 84. Something in my genes has been protecting me since I am only 15% blocked 1st year up to 19% second year. This could be increase or difference in operators doing it. If it gets worse I found a doctor to get PCSK9 inhibitors from which usually are not given before stroke or heart attack. I will pay for them myself if I have to. You can always write manufacturer for discount or maybe Mark Cuban’s drug site will have them. Anyway I have plan b and c to stay ahead of it. I also really liked lipidologist David Davidson in Chicago and he is going concierge medicine Jan 1 2026 but I will go to him if I get worse…pkan c. I feel so much better getting the CIMT yearly. Other option is about $1800 to $2000 ct angiogram with die and analysis and maybe the scan part could get covered by insurance depending on situation. Clearly is one of 2 companies to get this done at with no prescription. If I get more nervous I will go get that. I obviosly don’t buy into wait for it to get 50% blocked then we will start to treat tou philosophy. I actually had a cardiologist tell me that….made no sense to me.
@bitsygirl hey just realized….he used a company called cardiorisk.com and you can go to their website to find it near you. My doctor at the Cure center uses them. Lifeline screening does CIMT but not real analysis like cardiorisk. just low medium and high level for screening.
I just found out that I have the same gene. My scored 61 and I’m scared my dad died of arterial sclerosis. I’m 70 pounds overweight if not 80. And confused and scared.
Hi, @amylynch and welcome to Connect. I am glad you are here to find more people “like you”.
I deal with health problems related to genetics as well so I understand how you are feeling. Talking to a genetic counselor was helpful. I felt better once I understood what was in my control to help. My personality is learn all I can, do the best with what is in my control and let the rest go. Some days easier said than done. You can do this!
I assume the 61 score you state is your LP(a) level, and you mention a gene. What is the gene, and what prompted testing? What is next for you, will you be visiting with a specialist?
@elle7 Thanks!