Anyone else out there with extremely high lipoprotein (a)?

@islandgirl33, I am sorry you are learning about all of this in a very difficult way. I find myself getting stressed about things I don’t understand, then the more I learn the better I feel about it. I hope your pharmacist has helped you prepare for your doctors appointment next week.

I want to encourage you to focus on what you can control, what you can do to be healthy. The other part is treatment, and everyone is so different as to what works best. Focusing on a good relationship with your doctor will pay you dividends. It will help to depend on your doctor and their expertise to walk you through what they know. This way you can focus on applying what you learn. Don’t expect to understand it all at one time, and that’s ok.

While diet doesn’t necessarily get super high LDL or LP(a) numbers where they need to be, it does help your body to function at it’s best. This in turn has to help the body process any drugs better. Exercise helps in a couple ways: it strengthens the heart and gets blood moving around our body. One cardiologist told me another huge benefit is that it helps patients be able to know their body well, to troubleshoot when problems do come up.

Tell me more about your health anxiety. Have you been experiencing other health related challenges? Why type of things do you try to reduce your stress?

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.

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?

Hello, my Lp(a) is 271 and I also have very high genetic LDL. I am meeting with my pharmacist next week to discuss the best treatment for me and I have an appointment with my doc on the 3rd. I will definitely be put on a statin but I wanted to ask you how your husband handled the Repatha, did he experience any bad side effects and is it a drug that has to be continued until there are treatments approved for lowering Lp(a)? Thank you.

Thank you for your reply, I appreciate it. Encouraging that you have experienced no side effects. I'm very concerned about sleep disturbance because I am an insomniac and onlt get a few hours sleep every night. I'm wondering if they would want to put me on 40mg because my LDL is higher. I have a consultation with my pharmacist on Tuesday and a drs appt with the GP on the 3rd. I am hoping I can find a statin that works without side effects. Congratulations on such a significant drop in your LDL, that's wonderful. 🙂

I’ve been scrambling for information myself these past few months. My Lp(a) is 240nmol, I’m 69, no family history, somewhat elevated LDL and cholesterol, treadmill/echo test was good (11.7 mets). Although statins can raise Lp(a), at present the only treatment strategy is to get all other risk factors under control. There are ongoing clinical trials testing drugs to lower Lp(a), I’m looking forward to learning those results.

I started generic Crestor 20mg in May and have had no side effects and my ldl dropped from 140 to 70. I regret not starting stations sooner given their low cost and absence of side effects.

Good luck with your conversations with your health team!

Hello, my Lp(a) is 271 and I also have very high genetic LDL. I am meeting with my pharmacist next week to discuss the best treatment for me and I have an appointment with my doc on the 3rd. I will definitely be put on a statin but I wanted to ask you how your husband handled the Repatha, did he experience any bad side effects and is it a drug that has to be continued until there are treatments approved for lowering Lp(a)? Thank you.

Hello - I saw that you're Lp(a) is/was 295 I just got my number and I am 271 plus I have high LDL. I have a doctors apt on Sept 3rd and am having a consultation with my pharmacist on Tues because I thought she could direct me to the best course of action.- I am on the verge of tears right at the moment, I live by myself and don't have anyone who understands my concerns. I am needing some reassurance. I noticed that you said your Lp(a) "was"295 and not "is" 295, did you get it to lower? I will need to go on a statin for my high LDL which apparently will make my Lp(a) go higher.