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

1) I am telling you that diet and exercise WILL bring your numbers down. I was replying to this: "Talking about diet is not helpful with genetic LDL and Lp(a). " We are a support group and I was offering support and first hand experience.
2) I was only speaking to my tactics dealing with anxiety as a CONSIDERATION - not to be condescending or insulting. I apologize for triggering you.
3) We are here because we all want help. I don't know everything about you and it takes many messages to sometimes hit the nail on the head. So, for example, you've just provided more information. Its important to know what you ARE doing and what you have done. I had university nutritional chemistry and I speak from understanding digestion and how lipids are broken down. Plus, inheriting CAD, plus negotiating my father's CAD for 25 - 30 years.
people tend to eat "low saturated" fats but don't realize that the other stuff they eat provides the COMPONENTS to make cholesterol MORE READILY. You might want to check into that science.
For some people statins do nothing. They will continue to build plaque even when the numbers are good. The doctors give them out like candy.
Climbing stairs is good - but the cardiologist told me that resistance/strength training is better.
There is a great book by Peter Attia my doctors all recommended it. "Outlives." Its like 600 pages and quite technical but does a wonderful job of thouroughly explaining heart and artery disease.
Now - you may not want to read what I took the time to write but it would be selfish to think someone else may not want to benefit from the info.
Inherited heart and artery plaque disease has to do with WHY the body is laying down plaque in the arteries not so much the cholesterol numbers.
You had said you didn't want to hear a lot of "bad stuff" so I was telling you the GOOD stuff. I am alive and beating the odds. I was trying to comfort you that there are options. And the more prepared you are before you get to to your cardiologist the better visit you will have.
4) Make sure you ask for all the tests - the calcium scores, the photographs of your heart and arteries. That is important. You don't have, and neither does your doctor, have enough to give you a good visit until they actually SEE the conditions of your artery walls. If you don't like my post, just pass it by.

No where did I say that diet is not important. I said that diet and exercise will not bring numbers down. I am 64 and just diagnosed, so I have lived all of my life without a cardiac event too. My numbers are very high. For the past 8 months I have been on a very low sat fat diet, I have never driven, I walk everywhere, climb stairs and my LDL number is higher now than before the beginning of the year. Respectfully, I was not asking you to comment your story and history. I also don't appreciate your comment " I have anxiety too - but I face it", implying that I don't. You and I are VERY different people, I would never have made the comment to someone that you made to me above. Please don't respond to me any more.

Don't fret! Get armed with info over the weekend so you can be focused for when everyone returns from the holiday! There is so much to know! Get books from the library or research online. Avoid the snake oil sales companies! you can start to work on your diet immediately! Lots of fruits and vegetables, lean chicken and fish, little lean pork almost no red meat, and get some exercise! Get rid of refined breads, cakes, pastas, rices and potatoes. Switch to whole grains, brown rice, red potatoes and quinoa brown rice pasta. Ask to be tested every 3 months to check the direction of your lipids. Get your A1C and glucose checked and adjust - even if it is "borderline." You will exert control over what you can going forward. At 58 you can find out if you HAVE clogged arteries and you can deal with it so you have a LONG and HEALTHY life. That is the good news! My dad had his first widow maker heart attack at 58 and he led a long full life to almost 90 WITH heart disease because he was an active participant in his health. My cousins were not so lucky because they wouldn't change bad habits. So there you have it! Start reading how to help yourself! and stay involved in your care and you won't have a bad outcome!

I will entirely disagree that diet isn't important with inherited familial coronary artery disease! I have been on a Mediterranean diet and EXERCISE my whole life and started testing cholesterol, triglycerides and whatever else I could get tested when I was 18! I missed the heart attacks and strokes that everyone in my family had in their 50s & 60s. There came a point where diet and exercise weren't enough (in my later 60s) but I had already laid the great ground work for keeping my lipid numbers low enough where they probably won't be the kind of issue they were for the rest of my family who inherited the disease. I have anxiety too - but I face it (I am not risk adverse). I go to all the doctors who will see me. I have an awesome cardiologist and he said to change to strength/resistance training now. I will do that. I dropped my triglycerides and cholesterol again by refining my diet. I acquired insulin resistence and asked for medicine. Now I am feeling much better and hope that now that my insulin is processing better it will help sustain what I need to keep my body mechanics in good shape. Statins did not work for me. My dad was on them for 25 years, 169 cholesterol and continued to have artery blockages all the way!

Thank you.

@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.

Hello, l found out this year that my LPa is 438nmol. I'm 67 years old and female. Presently on 20 mg of rouvstatin and taking aspirin. I'm awaiting an appointment at a Lipid clinic in Hamilton. I have not had any cardiac issues so far.

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?

Before I started the rosuvastatin I was very worried about the possible side effects, which is why I delayed them. You just won't know until you try. I feel lucky given that many people have had to fight through multiple types of statins before they find one they can live with, if at all. Good luck! And keep asking questions of your health care team - push back when they are not being clear!