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.

islandgirl33 | @islandgirl33 | 2 days ago

In reply to @jlharsh "Hi @islandgirl33, and welcome to Mayo Clinic Connect! I am so glad you posted about your..." + (show)

@jlharsh

Hi @islandgirl33, and welcome to Mayo Clinic Connect! I am so glad you posted about your elevated LP(a) and genetic high cholesterol. Hearing about this for the first time is quite distressing. @jdwelch2025 and @rainerhans already have commented, and you will find more members willing to share helpful experiences. I hope you find comfort that you are entering something that does not have to be fixed today (or even tomorrow). Every small lifestyle and medication change you turn into habit will help you be the best version of you. You can do this!

I have FH (familial hypercholesterolemia) and I have learned while 1 of 5 people have elevated LP(a), it tends to show up more in folks with FH. My FH comes from my dad. He is 90 years old and has LP(a) similar to yours. He is still very active. I have had more than the average struggle with controlling my LDL and have learned there is not a cookie-cutter approach that works for everyone. I am even on a couple medications to treat mine that I had been unsuccessful with before. I swore I would never take them again, and here I am.

I found information you may have already seen but helpful if not:
- How does LP(a) impact my heart health? https://www.heart.org/en/health-topics/cholesterol/genetic-conditions/lipoprotein-a-risks
- FH symptoms and treatment (refers to LP(a), too) https://www.mayoclinic.org/diseases-conditions/familial-hypercholesterolemia/symptoms-causes/syc-20353755
- You may want to consider Mayo Clinic, though I am not sure how that works that you are in Canada. Go here to make an appointment: http://mayocl.in/1mtmR63

You mention what the stressor of learning about your high lipids adds to already dealing with not sleeping well. You are so forward thinking here to recognize how important it is to understand how your entire body can be impacted. I have no doubt your doctor will want to talk to you about the things you can do to be as healthy as you can, and this in turn will help your body process any drugs you end up taking. What a great place to focus as you learn from your specialists.

If you are comfortable, I am interested to hear more about your health and how you found Connect. Do you have other health issues, and what led you to finding out your LDL and LP(a) levels? What does your lifestyle look like……diet, activity, self-care?

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Thanks for your reply. I had routine blood work done and my LDL was high, I tried bringing it down with a very low saturated fat diet but it didn't lower so I was re-tested for Lp(a) and it was 271.- I suffer from health anxiety so I hesitate to post about my situation because most people want to talk about the bad stuff and it creates more anxiety and worry for me because I live alone and I ruminate about all of this. I did join an Lp(a) fB support group and asked the very specific question which was if anyone had both FH and Lp(a) and if their numbers were as high as mine. One woman said her Lp(a) was over 500 and her LDL was double what mine was. She was very helpful that there are good treatments out there and she helped put my mind at ease. I find so many people reply with comments that have nothing to do with the question I asked. Talking about diet is not helpful with genetic LDL and Lp(a). I am seeing my pharmacist in a couple of days to get her opinion on what might be the best med for me and then I have a drs appt on Sept 3rd and she will prescribe whatever statin is decided on.

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