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@stuffy

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.

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Replies to "You can also save your own life that way, as I have a couple of times...."

This is a sad but great story!
Thank you for sharing!!

wow. what a story. I have similar. What I say is that I'm lucky to be "rescued" at the perfect time. Because medicine evolves. You kiss a lot of frogs to get to the prince (if you don't die in the process!) and then you help others. High cholesterol might keep some alive (I watched a PBS documentary) but those of us with cardiovascular disease markers - it kills. So low cholesterol it must be for sure.
Yes, gotta to find your "princes (princesses) in the medical world!