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Extremely high calcium score at 42 - is there any positive here??
I'm a 42-year-old male. Exercise regularly, not overweight, non-smoker. While not overweight, I will say that my diet is crap -- way too much fast food, pizza etc. I guess I still eat like a high schooler.
Anyway, I saw a cardiologist figuring after age 40 this would be wise. He took bloodwork which was basically all fine. The cholesterol was *slightly* elevated and he recommended getting a heart calcium score. Told me he expected it would show nothing but that he just wanted to be thorough. Turns out the score came back at 397.
Obviously, this caught me totally flat-footed. I figured with my diet there might be some plaque, but this number places me in the 99.999th percentile for my age. And everything I have read online sound pretty dire about my long-term prognosis now -- that significant damage has been done, that it can't be reversed and can only get worse and that the statistical linkage between a number like this and heart attack-stroke is profound.
Weirdly, the cardiologist did not seem to be conveying any alarm when he told me the score, though. He was extremely matter of fact about it. Just said it was "very, very high" and that he would put me on a statin (which I've already started) and that I should take daily baby aspirin (doing that too). He said I should focus on improving diet and continue exercising (I already run 4-5x a week) but he was also pretty emphatic that "this must be genetic." (There is a history of heart problems on my father's side of the family -- though he is 76 and has yet to have any heart trouble himself.)
This was all a lot to get hit with at once. From the doctor's casual, matter of fact tone, I left the office a little confused, wondering if maybe this score wasn't that big of a deal and was a very manageable thing. Why else would the doctor not seem that disturbed by it? But then I started reading everything I could find on the subject and it's been pretty devastating.
Obviously, I'm ready, willing and able to implement the dietary changes, but for the score to be this bad at this young of an age (and with no smoking history, not being overweight, and doing regular exercise), it seems like I'm in serious trouble here. So upsetting to read that I can't bring this number down.
I guess I'm just posting this in the hopes that others here might have some experience and insight and be able to offer something, anything that is encouraging? When I read all of the medical material online about high CAC scores, am I missing something? This has all been playing out over the last 24 hours and I feel like I've basically just found out that I could drop dead of a heart attack at any moment and that my life expectancy has been drastically reduced with this news -- and that there's no way to get it back to normal. I now have a million questions for the cardiologist, but when I called his office today I was told he's just started his vacation and won't be back until August.
Any encouragement or practical advice would be greatly appreciated. Thanks.
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This is what I think is missing from just about all of the medical/research materials I can find online: Data showing divergent outcomes for those with documented very high CAC who follow the statin/diet protocol vs. those who don’t. And an emphasis on the ability of patients to dramatically reduce risk, if in fact they can.
It obviously makes logical sense, but in my case it also seems to be a bit of a mystery how the number is this extraordinarily high this early. Genetics is a likely factor, and I suspect issues with my thyroid are a player too (I’ve read plenty now linking hypothyroidism and arterial plaque development). So I do fear that even if I can get the LDL to the recommended level through statins and improve my diet (as I’ve already begun doing), the plaque will just keep coming. Since the CAC score doesn’t seem like a good measuring stick going forward, the only metric to measure my progress will be LDL level. And I have to trust that getting it under 70 will make the difference. It’s just odd to me that mine isn’t **that** high to start with (LDL 107, total 215, HDL 85, triglycerides 43, all other key markers normal), and yet my CAC is through the roof. Seems like many others here at least have a few lipid data points that indicate clearer vulnerability to plaque formation.
For what it’s worth, I completely agree about the lack of data on diversion outcomes. Let’s say we put our numbers in the calculators, and we get a 17% risk of an event. Is that 17% of a combination of people who do and do not follow protocols, 17% only if you don’t follow protocols, 17% only if you do follow protocols… And assuming it’s a 17% combination, what is the percent reduction for those who do versus those who do not. I have never found any your data on this.
The strong impression I’m getting is that the data we are both looking for doesn’t exist and that the kind of trial needed to obtain it would probably not be feasible.
I noticed this from Dr. Paul Ridker from Harvard, who is clear that he does see CAC as a strong predictor of future cardiac events but also questions its overall usefulness in terms of treatment:
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Paul Ridker, the PI of the JUPITER trial, notes that “there are no statin trials based on CAC scores nor do statins lower CAC” and writes:
It is imprudent to use a technology we know is associated with radiation exposure, expense, and a considerable “incidentaloma” rate without knowing that it actually identifies individuals who preferentially benefit from any specific therapy.
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That’s the heart of it (no pun intended) for me: Why some people have such high CAC scores and others can have a 0 is not entirely clear, beyond genetics. But it’s clear that plenty of people have super-high cholesterol and/or horrific diets and are overweight and yet have minimal to 0 CAC scores. Others, like me, have pretty good lipid profiles (on all of the traditional non-CAC risk calculators, my 5/10-year risk clocks in at like 1-2% — then at least quadruples when my CAC is added). But it’s the CAC score more than any other measurement — by far — that predicts fatal outcomes. I’d like to say this could be due to not having enough data/the test being relatively new/etc, but unfortunately there are *are* massive-scale studies (MESA) that have conclusively demonstrated the airtight link between CAC and heart incidents.
So I’m taking the statin (and struggling on it), have radically overhauled my diet, but the bottom line is I don’t know if any of this will matter at all, because I know that I have a CAC level that would be high for any age, that it can’t be brought down, and that the simple fact of having it has dramatically raised my prospects of dropping dead any minute now.
I have found this pretty much impossible to come to terms with, because it feels like I may have already lost the battle and it’s just a question of time — days, weeks, months, a few years — until I have the big one. No one is entitled to a long life. I should be happy I got 42 years. But man, it went fast, and I guess I just always figured I’d be here a lot longer.
After getting my 1029 CAC score at 59, I was in shock given my basic lipid profile has always been on target, my diet is pretty good, and I get 12K steps daily for 10+ years. With Crestor + Diet, we got my LDL down to 38, but after getting an advanced lipid profile (Quest Cardiac IQ), I discovered my Lp(a) was almost 300. I am pretty sure Lp(a) is the root cause of the CAC issues and it can't be controlled with diet or exercise. Hopefully, Pelacarsen, which is shown to significantly reduce Lp(a) gets approved before my time runs out... It's hard to treat CAC if you don't know the root cause of it.
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2 ReactionsI don't know if the Quest Cardiac IQ also looks at cholesterol molecule size. It was the cholesterol size and type that explained my 0 CAC (aka Agoststen score) for Dr. Agosten on the then-available Berkeley Cardio Profile despite my chronic high cholesterol.
I've mentioned this before here...that molecule size and 'stickiness' are significant variables impacting plaque buildup. The percentage of those molecules is what over-rides my high cholesterol and puts me in profile/category A ("optimal").
Exercise and diet can trigger more production of the "big, fluffy, non-sticky" cholesterol molecules according to Agosten and my current cardiologist. I have stressed this here as it's one significant variable one can effect without even taking a statin.
Are your doctors essentially suggesting you 'get your affairs in order'?
So I’ve looked into the Lp(a) question. There was a major research paper on it released earlier this year that combined Lp(a) and CAC and assigned three risk tiers for cardiac events:
1) High Lp(a) *and* high CAC: Extremely high risk
2) Normal Lp(a) and high CAC: Not as high risk but still significant risk
3) High Lp(a) but no CAC: Lower risk
Personally, I fall into #2. Lp(a) level is totally fine. And yet my CAC is sky high. So for me the root cause is still unclear, and may never be. But even in that study, CAC ended up being a bigger driver of risk even than Lp(a).
My understanding of heart disease has really been transformed through learning about CAC. I spent so many years thinking it was all about cholesterol levels. But this is the number that really matters. And mine is about as bad as you could possibly get at my age.
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1 ReactionGlad to hear you have that kind of protection. It’s another aspect that just doesn’t make sense in my case. I’ve been very physically active through most of my life. Been running for 20 years. No evidence this has produced any kind of beneficial, CAC-preventive cholesterol though.
Well, you don't know where you would be if you'd not been physically active....the old 'path not taken' analytical conundrum, right? One of many in life ;-).
Ha. The other way of looking at it is that some people are fortunate enough to be able to exert some control over the fluffiness/stickiness of the cholesterol while others aren’t and have other factors driving their body’s desire to build up arterial plaque. I would guess you (fortunately!) fall into the first category, while I’m in the second one. But I’ve run thousands of miles over the last two decades, walk 3 miles/day, and do resistance training. If this worked as a significant variable for me in terms of my plaque situation I wouldn’t have a CAC or three hundred and friggin’ ninety seven at 42.