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Comment by brandonmenc | Hacker News Reader

> No further questions about what I eat, my stress levels, lifestyle - nothing.

A friend has familial hypercholesterolemia - cholesterol levels were around 1000 as a child, on statins since like, age 10.

At their request, the doctor dialed back the statin dose and cholesterol levels shot back up within days - even on a vegetarian diet with plenty of exercise.

They asked if they could start eating egg yolks again and the doctor said something like, "Go ahead. Your diet does not affect this condition at all."

Familial hypercholesterolemia isn't the same thing as having a 300 cholesterol level because you eat McDonald's. Listen to your doctor - they do know some things.

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Absolutely, agree with all of that. What I'm moaning about is the absence of desire to explore further. I don't know if I've had high cholesterol for a long time or not or whether it's lifestyle or not, or whether I do actually have a 1 in 500 genetic mutation that means that my liver doesn't process cholesterol correctly or not. I want to look into some of those possibilities a bit more before I take drugs for the rest of my life is all :-)

The thing is, if you have familial hypercholesterolemia, some forms have life expectancy of 35 without medications. Patients might have severe atherosclerosis at the age of 10. There is a seriously heightened risk of CVD mortality without statins no matter what you eat or how hard you exercise if you really have it. So in that case your doctor is correct: there's nothing you can do but take medication. But what were your lab results for LDL?

> some forms have life expectancy of 35 without medications

This. You don't have a lot of time to experiment.

My guess is it's best to listen to your doctor and get on statins immediately. Then alter your diet and activity level, and after that try cranking back the statin to see if the lifestyle changes took.

Lifestyle or dietary changes don't work if he has familial hypercholesterolemia. You're not supposed to ever adjust your medication without consulting your MD. It's a good general rule that - when broken - can have fatal consequences in serious diseases such as this.

I agree with you - we're just getting our signals crossed.

My unspoken advice was, "under doctor supervision," which I assume everyone understands (I know, a lot people don't.)

You can get a genetic test for FH, but afaik they're rarely performed, although maybe the OP needs one to convince them they really have the condition.

What I suggested was to follow the doctor's advice and, later, under their supervision, adjust statin dosage after lifestyle changes to see if the condition is still present. I'm not a doctor, but I know that my friend's doctor did exactly this - not as a way to convince them they had FH (they were already convinced), but to see if they needed that high of a statin dosage (they did.) That may be what the OP needs to be convinced, while also staying safe.

We both agree that the OP needs to be convinced that they have FH as soon as possible, and should do nothing regarding their treatment without a doctor's approval.

Yeah, I'm aware of this and it's pretty scary! That's why I'm certainly not ruling out the drugs. What I want to do it figure out if I do have any damage with a CIMT test. If that shows I'm taking damage then it's a done deal, but If I can change my LDL through diet I think I owe myself a couple of months at least to try.

I'm not that familiar with the CIMT test, but by quick glance it only tells whether your carotid artery is affected. A negative result won't tell you whether the rest of your arteries - such as the coronary arteries - are affected.

But I'm a bit curious: Who referred you to a test like this in your condition?

Nobody did, I just phoned my GP and asked him if he could, but he said that's a question I'd have to put to the specialist. My reasoning was that I want to assess whether I already have arterial damage or not, as that will have a significant bearing on how I asses my risk of not taking statins.

Regarding your earlier question, my LDL was 7.8 mmol/l and total serum cholesterol was 10.3 mmol/L (I make that and 301 and 398 in US money)

About assessing the risk of not taking statins: As I said, the exam you're about to take is only able to give you positive answer (yes, your carotid is sclerotic), not negative (won't say: no, your coronaries or the rest of your arteries are not sclerotic), so it's sort of useless.

What I'm still wondering is how a familial hypercholesterolemy would have been missed during earlier blood tests? It's a pretty standard test here, and 7.8 and 10.3 are extremely high for a fit person.

Interesting point on the CIMT test, I hadn't considered that. I'm not sure I've ever had a cholesterol test before, so that might be why it wasn't picked up. :-)

My GP seems to be saying the because I'm fit and healthy, there's no other possible diagnosis than FH given the high numbers. I was kind of hoping for a bit more investigation and perhaps some corroboration. I'm not sure what form that should take though - genetic screen perhaps?

Probably there is no other possible diagnosis if your thyroid is ok. You can go do tests, but also the treatment probably remains the same (statins, etc.).

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