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

You can also save your own life that way, as I have a couple of times. Once when I was approaching menopause and my OBGYN announced that at my next visit she would probably put me on the Pill. I said I wouldn't do that without doing some research, since there were cases of blood clots in my mother's family, including my mother. She said, it's only 1 in 10,000, that's very unlikely. I did the research and decided not to take the Pill.
I had a gall bladder removal later from the surgeon who invented the minimally invasive technique (yes, I researched him) and it turned out my GP, who had failed to diagnose the gall bladder issue in the first place, was pooh-poohing my idea that my very painful leg post-surgery might be a clot. The misdiagnosis had meant the surgery was late, and I had gangrene - and every last bit of it had to be scraped out, a difficult thing this surgeon had never done before. The GP did not order an ultrasound and so I started looking up vascular doctors in Best Doctors. I got a referral from an assistant to a doctor who turned out to be researcher - she said there was a great vascular guy at NYU. He sent me immediately for an ultrasound - in a wheelchair - and the scanner inadvertently let out a yelp. She said I had a giant clot in my thigh and he would probably keep me in the hospital. The vascular guy was furious - do you realize you could have died at any point in this journey? I did, actually, which is why I didn't give up and take my doctor's word for it. After a week in the hospital I was released and had to find a new doctor right away. It wasn't until 2000, just after the Genome Project was completed, that I had a knee replacement and got a fully clotted leg after the surgery. My GP hired an outside consultant over the objections of the surgeon, and that man sent off a blood sample to somewhere far away on his hunch I might have a genetic clotting factor - Factor 5, in fact. I probably owe my life to that GP, the one whose patient I became after the first clot.
Science isn't cast in stone, it constantly evolves - and doctors have experience with their own patients and those of their colleagues. Word gets around. You need to be sure you're not inadvertently putting yourself in some unknown danger, so you can't just diagnose yourself and then treat yourself.
The women with the highest cholesterol live the longest, according to a monster review of cholesterol studies cited by Gary Taubes, if that's any comfort.
A lot of doctors ARE independent thinkers but most of them are swamped with work, keeping up with their field - a full-time job - and the requirement to stick to the guidelines for their institutions and they just can't afford that luxury.
You do of course NEED to work with a doctor and there are networks of them, as there are networks of researchers, some of the ones on your list.

YES! Dean Ornish

Sorry, Dr. Ornish, not Onrush...

Maybe Dr. Dean Onrush?

lindy,

It is great you have taken control of your weight and health.

I continue to be concerned about self-help medicine; while it may seem appropriate, in many cases those involved are someone blinded by their opinions of complex topics, and by their desire to be in charge.

Your dismissiveness regarding those who are trained and experienced, and your support for podcast doctors is troubling, as well.

Please be careful.

to MAYOCONNECTUSER1 I'm a retired health teacher and have studied nutrition since 1978. As for the the podcasts, they are from well educated, experienced doctors. And their information is science based. The doctors have decades and decades of experience in their specialty fields and I trust them. Let's compare that my own doctors at NYU Langone doing absolutely nothing, and who don't even know I have steatosis because they never saw it noted by the radiology Dr who interpreted my lung cat scan. And my doctors only want to look at LIPIDS and tell me to take statins when they are unaware of the whole picture and have no way to address the fat in my liver. They only care about the statistics they plug into the computer telling them my risk factors in 10 years of having a heart attack or stroke. I'm addressing the root cause of the lipids and cholesterol. I don't eat barrels of saturated fat.
I eat a pristine diet of whole foods so was shocked to read on a LUNG CT scan I have steatosis of the liver. I personally thanked the radiologist. I'm doing it my way - Naturally and Slowly. I had a holistic doctor ask for 33 vials of blood and I see him today, Oct. 1 2024, for his analysis of the reports. I have seen the blood test results and have learned how much I didn't even know about my body but it's all making sense. I've studied research papers from medical websites. I understand the reasons why things are going on and ways to correct them. The crashing after eating a meal - even a meal of healthy small portion of poached chicken breast in bone broth, 1/2 cup steamed cauliflower and a salad with no dressing. The INSULIN test was 30.8. and should be 18. I have insulin resistance. So listening to Dr. Eric Berg and his podcasts with reputable doctors on his podcast and by him sending me guides for free on the KETO diet have been appreciated. My own doctor is disappointed that I continue to refuse a statin. She is fear based She has protocols to follow at the University based medical system. Years ago, I've tried Crestor and Lipitor and my legs were in so much pain I had to stop. My doctor doesn't trust that I'll find my way through gentle natural ways which even includes forgiving all the people who have harmed me. Meditation, and being diligent and disciplined every single day. The liver is the seat of "Anger". My neuropathy is very bad so I cannot run but am slowly moving my body and sitting down using hand weights. I'm 5 foot 10. 74 years old. I've gone from 1/1/24 - 207 lbs. down to 10/1/24 - 184. I have 20 more lbs. to go. I consume zero sugar. zero white refined flours and rice. Now I'm phasing into the next stage and after my meeting with the holistic doctor, he'll set me up with the correct exact food plan and supplements - of which I take many, already. Niacin and NAC are faithfully consumed every day. I've dropped 102 points in triglycerides in 2 months. You sound well intended, but a real "Doubting Thomas", just like my Primary Care doctor. I even bought a body composition scale that SHOWS me 12 different measurements inside my body. I'm thoroughly committed in my own recoveries. thank you for replying.

lindy,

Do you have sufficient education and experience in science and medicine to make such broad statements?

I'm concerned by statements like yours regarding podcasts and refusal to take statins ... it is very common to see these sorts of comments, but they are not generally based on appropriate levels of science, education and experience.

Good information. The info I saw must have been older then. I had heard that in could be dangerous in very large dosages over an extended period of time.

Niacin was looking to be helpful in reducing LP(a) but in more recent studies niacin was found to be not helpful as hoped and could be dangerous.

Thank you for replying. I am also doing deep mindful meditation to calm my nervous system, diaphragmatic deep breathing, and reaching out to the world as I've learned how dangerous it is to heart health to live alone and be isolated. Groups like the Mayo Clinic support groups are validating and helpful. Linda