Catastrophic cholesterol expensively controlled

My blood is no longer buttery

I promised three good news items after reviving the newsletter last month. Today is number two, and it isn’t very relevant to Project Try Everything — or is it? — but it’s still great medical news.

My pathologically high cholesterol has now been dramatically reduced by a potent and extremely expensive drug — Repatha, an injectable alternative to statins. My risk of heart disease and stroke is now way, way lower.

Maybe less pain and fatigue too? 🤞🏻 Not so far, but there’s still a sliver of hope for that.

The adventures of Fatty Bloodman

My high cholesterol was first noted with concern back in 2015, but the story kicked into high gear in late 2023 when I was diagnosed with “familial hypercholesterolemia.”

FH is a genetic disease that makes the liver ooze too much cholesterol — not the same thing as the somewhat high cholesterol most people get as they age and get out of shape.

“I really want you to understand,” my cardiologist told me, “that you cannot fix this with diet or exercise. It’s a glitchy liver thing, not a lifestyle thing.”

And it’s serious! This grim nonsense afflicts roughly 1 in 200 people, but we dominatethe heart disease statistics.

⚠️ Cholesterol denialism in the comments will be answered only with a link.

Could unusually fatty blood explain my mysterious health problems?

The timing is about right.

Maybe drowning in lipids doesn’t just cause heart attacks and strokes. Maybe unusually high cholesterol is relevant to my decade of pain/malaise, in the same way that high blood sugar can make people feel a bit rough even before they are diabetic.

What if my poor health had this fairly obvious and measurable cause all along?

Unfortunately, that seems unlikely … because my typical symptoms are about the same as ever, despite the steadily plummeting cholesterol over the last few months.

There‘s just a sliver of hope left because, hey, maybe it will just take a while.

It’s been a roller coaster ride

There's good news now, but there have been some very low lows.

I spent 2024 experimenting with the statins, and I basically had all the side effects, especially widespread distinctive muscle aching and cramping. Those are just delightful complications to add to a life that was already full of weird aches and pains.

So that sucked. (See also: Sign me up for mild muscle pain? The statins dilemma.)

More delightful still? I also got one of the most exotic side effects, a rare but documented phenomenon: tendon rupture. Seriously. My triceps tendon, at the elbow.

There are actually several drugs that are corrosive to the integrity of tendons.

But back to the good news! Perfect pipes

Despite at least a decade of living in the high-cholesterol danger zone, I’ve still got the arteries of a teenager, apparently. I appear to be almost freakishly immune…

• A cardiac CT scan showed perfectly uncluttered vessels.

• So did a carotid ultrasound.

• You can see it in my eyes! The retina is a good place to look for early signs of subtle arteriosclerosis, and I have none.

It was amusing how happy my cardiologist was when he called me with the results of the cardiac scan …

“Honestly, I was expecting this to be a rough appointment, with me basically trying to tell you that your heart is a time bomb. We often seen younger people with hearts in rough shape from lipid profiles that aren’t as bad as yours,” he said. “But you … there’s just nothing there, clean as a whistle. I wish my job was always like this!”

If my cholesterol is so bad, why are my arteries so fine?

Maybe I have some “angel genes” protecting me from the consequences all the cholesterol being produced by the bad ones. Or…

Exercise for the win yet again?

This was floated by the cardiologist with no prompting, because he was also impressed with my exercise discipline. (“You work up a sweat almost daily? Seriously, for real?”)

Exercise may not be able to lower the cholesterol levels of familial hypercholesterolemia, but it is still protective. Fitness still lowers the risk of cardiovascular disease through many mechanisms.

And I have worked obsessively on my fitness despite the damned exercise intolerance.

Maybe this is one of my rewards.

And now my cholesterol is also very low, so I guess I’ll live forever now.

Getting actually good medical help is fun

Many people following my adventures understand how frustrating it is to try to get good help for undiagnosable chronic pain and illness. So you’ll relate to how weird and good it has felt just to be taken seriously, never mind actually getting good care.

I’ve gotten both with this whole cholesterol thing.

There‘s a clinic here devoted to caring for people at high risk for stroke and heart attack, and I was a shoe-in. It was clear from the start that these cardiologists were a bit in awe of my numbers, and they were very … welcoming.

I was so happy to be taken seriously that I think I must have seemed pleased by my Serious Diagnosis. 😜 Really? So it’s bad? And the diagnosis is definitive and uncontroversial? Excellent!

And then it got even better: after completing the statin obstacle course, I actually qualified for a super expensive but effective drug, fully paid for by a sane system that understands that it’s a good investment.

Cost of Repatha? About CAD $1200/month.

Cost of strokes and heart attacks? More. A lot more.

But “mainstream medicine doesn't care about prevention.” 🙄 Um, this is by far the most preventative medicine I’ve ever experienced!

What’s “cholesterol denialism”?

This topic attracts strong opinions and crankery (and it certainly did when I shared this on Facebook).

It’s the denial of the relevance of cholesterol to heart disease, and the benefit of medications that can reduce cholesterol.

And it’s “denialism” rather than “healthy skepticism” because the skepticism stopped being healthy at least a decade ago. Yes, there is (still) legitimate controversy and debate in the field. I am not equating any such debate with “denialism.” But there is a spectrum of opinion and style, and the word aptly describes a very real faction at one end of the spectrum of opinions, and they are clearly the do-your-own-research type: undereducated, overconfident, loud.

You can read much more about The Cholesterol Controversy from a trusted website (ScienceBasedMedicine.org), and a particularly good expert, Dr. Christopher Labos.