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.

Interested in more discussions like this? Go to the Heart & Blood Health Support Group.

@survivor10

Cleveland clinic diagnosed me AFTER stroke, apparently the labs don't even check you're LPa until catastrophic event. My 1st cousin literally had a stroke as a freshman at college, another a heart attack in 40s, my sister a TIA in 30s on and on. My sister who exercises, never overweight, has watched her diet religiously also has high LP(a) and our family has high factor VIII. Keep moving!!! Keep your blood moving! I am also on low dose aspirin with the atorvastatin 40mg. I drink a glass of red wine every evening. I haven't had anymore events, am living with completely occluded MCA and bc I kept moving no noticable deficits, only I can tell that my fingers on the other side do not work quite right. My youngest cousin recovered completely and had two healthy children. Keep moving! Find a good women's cardiologist and a lipidologist. Dr. Cho at Cleveland clinic (excellent bedside manner and awesome doc) and Dr Carranza-Leon at Vanderbilt. I haven't ever lived close enough to go to Mayo

Jump to this post

Weird you mentioned fingers. I noticed the same -on my left hand there is not as rapid a response to like finger tapping etc. Ugh.

REPLY
@tia50

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

Jump to this post

You are right,
Statins can have the side effect to higher LPA dramatically.
My husband is off the statins now since a few weeks, decided to pass on Repatha, after 2 shots, to see how his lab turns out in a few weeks.
We will keep you updated.

REPLY
@tia50

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

Jump to this post

There is some conflicting information online, but most apparently indicates that studies support that statins do not meaningfully increase lp(a).

Here one such review ... I am not a medical professional.

https://pubmed.ncbi.nlm.nih.gov/34849724/
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

Cleveland clinic diagnosed me AFTER stroke, apparently the labs don't even check you're LPa until catastrophic event. My 1st cousin literally had a stroke as a freshman at college, another a heart attack in 40s, my sister a TIA in 30s on and on. My sister who exercises, never overweight, has watched her diet religiously also has high LP(a) and our family has high factor VIII. Keep moving!!! Keep your blood moving! I am also on low dose aspirin with the atorvastatin 40mg. I drink a glass of red wine every evening. I haven't had anymore events, am living with completely occluded MCA and bc I kept moving no noticable deficits, only I can tell that my fingers on the other side do not work quite right. My youngest cousin recovered completely and had two healthy children. Keep moving! Find a good women's cardiologist and a lipidologist. Dr. Cho at Cleveland clinic (excellent bedside manner and awesome doc) and Dr Carranza-Leon at Vanderbilt. I haven't ever lived close enough to go to Mayo

REPLY

OMGOSH! Mine was like 268 and I thought that was Crazy. Yes it is very scary! I only found out about mine after an ischemic stroke diagnosis. I was 49. It runs in family usually. 12 years later and I have been prescribed 1500 mg niacin (prescription) OTC does NOT WORK. It has helped somewhat. I have always exercised and been extremely physically active as have my family members. I had been on simvastatin for several years but was switched to atorvastatin after stroke diagnosis so my LDL was low and my HDL high. Statins are not helpful for lipoprotein (a)

REPLY
@agb

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

Jump to this post

Lilly is doing a clinical trial.

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?

REPLY
@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
@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.

REPLY
@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.

REPLY
Please sign in or register to post a reply.