Extremely high calcium score at 42 - is there any positive here??

Posted by steveny @steveny, Jul 8, 2022

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.

Interested in more discussions like this? Go to the Heart & Blood Health Support Group.

@maryecox

My LP(a) was extremely high at 265. I enrolled in a double blind study of a drug to lower LP(a). So far I have had one injection and my LP(a) has decreased by 94%. Otherwise my bloodwork, EKG, heart echo, etc. are fairly normal. LP(a) is genetic and there is little that can be done to lower that number. Maybe this drug trial will be a game changer. Drug trials can be life changing.

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Was that number nmol or mgs?

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@maryecox

My LP(a) was extremely high at 265. I enrolled in a double blind study of a drug to lower LP(a). So far I have had one injection and my LP(a) has decreased by 94%. Otherwise my bloodwork, EKG, heart echo, etc. are fairly normal. LP(a) is genetic and there is little that can be done to lower that number. Maybe this drug trial will be a game changer. Drug trials can be life changing.

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I would love to join that one, but my number is 125 mg/ml. I don't know if that would qualify. If I could get that number down, I believe that I would easily live into my 90's with my other genes. Just the one number can be a killer though.

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OK. . the positive is you know what you're dealing with (top of class for production of plaque -lousy genetics primarily) and how to move forward. I had the exact same experience in my mid-40s, although I was obese. Doctor said if I didn't completely change my life, I would never see 60. So, I lost 120 pounds and started exercising five days a week. I'm now 74 and had my first heart attack three weeks ago -- completely occluded right artery. Two stents later, I'm exercising again and looking forward to a pretty bright future. Dr. said if I had not completely changed my eating habits and started exercising five days a week in my 40s, I would have had this attack ten years ago and it would have likely killed me. You have your whole wonderful life in front of you . . scrap the pizza, learn to love your Lipitor, scarf down those baby Aspirin, run, walk or dance the tango . . You've got this. My calcium score initially was 200 higher than yours . and some folks have scores in the thousands. You've been given the "key" as to how to tackle our future .. . you can do t his! All best. Equinelady (and yes, I'm still riding horses.)

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@equinelady

OK. . the positive is you know what you're dealing with (top of class for production of plaque -lousy genetics primarily) and how to move forward. I had the exact same experience in my mid-40s, although I was obese. Doctor said if I didn't completely change my life, I would never see 60. So, I lost 120 pounds and started exercising five days a week. I'm now 74 and had my first heart attack three weeks ago -- completely occluded right artery. Two stents later, I'm exercising again and looking forward to a pretty bright future. Dr. said if I had not completely changed my eating habits and started exercising five days a week in my 40s, I would have had this attack ten years ago and it would have likely killed me. You have your whole wonderful life in front of you . . scrap the pizza, learn to love your Lipitor, scarf down those baby Aspirin, run, walk or dance the tango . . You've got this. My calcium score initially was 200 higher than yours . and some folks have scores in the thousands. You've been given the "key" as to how to tackle our future .. . you can do t his! All best. Equinelady (and yes, I'm still riding horses.)

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@equinelady

Nice to hear you had a good outcome! I had a wake-up call at 50...not as drastic as your initial numbers, but enough to make me drop 30lbs, and exercise 5 days a week. I am on a low dose aspirin and crestor...I eat a balanced diet, avoid anything that is more than 0.5grams of saturated fat and eat salmon 2x a week, exceptionally minimal beef. My cholesterol this past week was a total of 83! and my LDL is 29, down from 35 6 months ago. I count my blessings in that I see so many people as you mentioned here much higher...my father in law is in the thousands for a calcium score and is 81...no symptoms with mild elevated BP that is controlled with meds. He eats like a lion... Mother in law the same...82 and she has a score of 500+, they live their life. My many aunts and uncles all lived to at least 90+ and all of them had high calcium scores....so go figure.

My BP is consistently around 116/74....no meds. My only vice is a bit of alcohol, but hey....you have to live!!!! Best of luck to you.

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So I haven't been here in a long time, but I started this thread originally in the summer of 22 when, at age 42, I learned that my calcium score was 397. I figured I'd update my situation for anyone curious/who stumbles on this at some point.

Basically: I had a very rough summer and fall in '22, losing myself in endless internet research, consultation with specialists, reading all of the compelling/contradictory diet advice from experts, having tests and scans done, etc. Eventually, I realized that the man who invented the calcium score, Dr. Arthur Agatston, is still in practice. So I became his patient.

This was almost exactly a year ago, and when I did, I calmed down fairly quickly. This was because I was very confident in him and he was up to speed on all of the latest research, testing and imaging and puts it to use in his practice. In short, he did advanced bloodwork that looked not just at my basic lipid profile, but at cholesterol particle size, "pre-pre-diabetes," and other things I have since learned a lot about. I also had a Cleerly scan done, and he works closely with them so he's as knowledgeable as anyone can be when it comes to interpreting results. What he found was encouraging: The Cleerly scan (as I think I mentioned in some earlier post here) showed 2/3 of my plaque was already calcified, and the other 1/3 was considered non-calcified -- and, crucially, that *none* was low-density/soft plaque, the least stable kind and the type most likely to cause a rupture and clot. And the bloodwork looked terrific. Low LDL particle count, very low small particle count, etc. And no diabetes, pre-diabetes or "pre-pre-diabetes." (I had taken a blood test in the fall of '22 that showed a high glucose number, but it proved to be a one-off and was probably the result of having eaten something too rich the night before). So Dr. A. felt that I had a fairly stable situation -- one that would only improve as I spent more time on the statin (I'd already gotten LDL to 51) , continued to improve diet and maintain weight loss (I've lost and kept 35 pounds off since this started and am at a weight I haven't seen in years), and took one more drug known to arrest plaque formation and stabilize existing plaque: Fenofibrate. This was December '22 and I left feeling very upbeat for the first time, and stayed that way for months to come, believing we actually did have a handle on this.

But then came the 6-month follow-up bloodowork. The basic lipid profile was still great -- LDL now under 50, HDL 85, low triglycerides, no elevated CRP or lp(a). But literally every metric on the particle test had moved in the wrong direction. Dr. A. admitted he was stumped. This wasn't supposed to happen given where my baseline had been and the treatment I was on. He raised a few possibilities but basically ended up encouraging me to focus on cutting out carbs as much as possible and to do a re-test and a new Cleerly scan in another 6 months.

Which brings me to this week. I had the Cleerly scan done again this week. And somehow, I have seen a 17% increase in my plaque volume. This was not supposed to happen. More worryingly, the balance between calcified and non-calcified has shifted; it is now close to 50/50. The idea was that with my treatment, I would dramatically slow the formation of any new plaques and that the existing plaques would simply calcify more and become more stable. Instead, I have developed new plaques and a significant new amount of non-calcified plaque. So the atherosclerotic process that we thought/hoped might have been more active in the past is still very active -- maybe even *more* active than a year ago. But how? Study after study after study says that I am doing and taking the right things to stabilize and improve this situation. The statin is supposed to shifty plaques from non-calcified to calcified. So is the fenofibrate. Taking all that weight off, especially around my belly, was supposed to be a huge boost. But even though my basic lipid profile looks better than ever -- LDL is now just 43 -- I am gaining plaque rapidly and it is spreading to new areas of my arterial tree.

I am supposed to speak with the Dr. soon -- can't come soon enough as far as I'm concerned. But I'm obviously quite discouraged as I write this. If you read this thread, you'll see that my extremely high initial CAC score was a mystery to just about everyone, and it's even more of a mystery how my plaque situation could be de-stabilizing and worsening under this kind of treatment and with these lifestyle changes.

I am hoping there is some root explanation that can be discovered here, but nothing in my conversations yet with the Dr. suggests he has many ideas beyond this approach. At worst, it was supposed to leave me in the same situation I was in a year ago and basically have no effect, positive or negative. But his experience and all available research, he said, suggested my situation would only improve. Instead, it's worsened. Which is very upsetting, obviously, and only amplified by the fact that it doesn't seem to make any sense.

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@steveny

So I haven't been here in a long time, but I started this thread originally in the summer of 22 when, at age 42, I learned that my calcium score was 397. I figured I'd update my situation for anyone curious/who stumbles on this at some point.

Basically: I had a very rough summer and fall in '22, losing myself in endless internet research, consultation with specialists, reading all of the compelling/contradictory diet advice from experts, having tests and scans done, etc. Eventually, I realized that the man who invented the calcium score, Dr. Arthur Agatston, is still in practice. So I became his patient.

This was almost exactly a year ago, and when I did, I calmed down fairly quickly. This was because I was very confident in him and he was up to speed on all of the latest research, testing and imaging and puts it to use in his practice. In short, he did advanced bloodwork that looked not just at my basic lipid profile, but at cholesterol particle size, "pre-pre-diabetes," and other things I have since learned a lot about. I also had a Cleerly scan done, and he works closely with them so he's as knowledgeable as anyone can be when it comes to interpreting results. What he found was encouraging: The Cleerly scan (as I think I mentioned in some earlier post here) showed 2/3 of my plaque was already calcified, and the other 1/3 was considered non-calcified -- and, crucially, that *none* was low-density/soft plaque, the least stable kind and the type most likely to cause a rupture and clot. And the bloodwork looked terrific. Low LDL particle count, very low small particle count, etc. And no diabetes, pre-diabetes or "pre-pre-diabetes." (I had taken a blood test in the fall of '22 that showed a high glucose number, but it proved to be a one-off and was probably the result of having eaten something too rich the night before). So Dr. A. felt that I had a fairly stable situation -- one that would only improve as I spent more time on the statin (I'd already gotten LDL to 51) , continued to improve diet and maintain weight loss (I've lost and kept 35 pounds off since this started and am at a weight I haven't seen in years), and took one more drug known to arrest plaque formation and stabilize existing plaque: Fenofibrate. This was December '22 and I left feeling very upbeat for the first time, and stayed that way for months to come, believing we actually did have a handle on this.

But then came the 6-month follow-up bloodowork. The basic lipid profile was still great -- LDL now under 50, HDL 85, low triglycerides, no elevated CRP or lp(a). But literally every metric on the particle test had moved in the wrong direction. Dr. A. admitted he was stumped. This wasn't supposed to happen given where my baseline had been and the treatment I was on. He raised a few possibilities but basically ended up encouraging me to focus on cutting out carbs as much as possible and to do a re-test and a new Cleerly scan in another 6 months.

Which brings me to this week. I had the Cleerly scan done again this week. And somehow, I have seen a 17% increase in my plaque volume. This was not supposed to happen. More worryingly, the balance between calcified and non-calcified has shifted; it is now close to 50/50. The idea was that with my treatment, I would dramatically slow the formation of any new plaques and that the existing plaques would simply calcify more and become more stable. Instead, I have developed new plaques and a significant new amount of non-calcified plaque. So the atherosclerotic process that we thought/hoped might have been more active in the past is still very active -- maybe even *more* active than a year ago. But how? Study after study after study says that I am doing and taking the right things to stabilize and improve this situation. The statin is supposed to shifty plaques from non-calcified to calcified. So is the fenofibrate. Taking all that weight off, especially around my belly, was supposed to be a huge boost. But even though my basic lipid profile looks better than ever -- LDL is now just 43 -- I am gaining plaque rapidly and it is spreading to new areas of my arterial tree.

I am supposed to speak with the Dr. soon -- can't come soon enough as far as I'm concerned. But I'm obviously quite discouraged as I write this. If you read this thread, you'll see that my extremely high initial CAC score was a mystery to just about everyone, and it's even more of a mystery how my plaque situation could be de-stabilizing and worsening under this kind of treatment and with these lifestyle changes.

I am hoping there is some root explanation that can be discovered here, but nothing in my conversations yet with the Dr. suggests he has many ideas beyond this approach. At worst, it was supposed to leave me in the same situation I was in a year ago and basically have no effect, positive or negative. But his experience and all available research, he said, suggested my situation would only improve. Instead, it's worsened. Which is very upsetting, obviously, and only amplified by the fact that it doesn't seem to make any sense.

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**That should say a 23% increase in my coronary plaque -- from 245 mm3 to 317 mm3. In the span of 16 months while taking a statin and fenofibrate, crushing LDL under 50, keeping all excess weight off, exercising regularly, and improving diet/incorporating Mediterranean principles.

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Hi SteveNY,

Sorry the numbers have gone the wrong way.

So, given all this, what could be added?

You're already on a statin, right?

81mg aspirin?

Did you try icosapent ethyl (Vascepa)?

Time for "gold standard" catheterization to look? I know they don't like to do these without some physical indicator, like pain or discomfort ... but, it may be warranted?

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A bit of encouragement, I have learned that statins will increase your calcium score to stabilize your already existing plaque. Have you changed your diet? I am 42 (female) and found out almost a year ago that I too have a CAC score of 21.1- I was placed on Crestor 10mg- lost 40lbs- Never really overweight but said Well now here is the perfect opportunity- went from 147 to 107- eeeekk- and also found out I was insulin resistant. I was placed on Trulicity for a while- now transitioned to metformin. I think most of this comes from finding your root cause- mine would in my heart of hearts my gut feeling was the innertube around my belly and being type II diabetic. Now all of this is under control- and my numbers look amazing. However, I can't see the inside of my body to see my heart and who knows I may have the same scenario and just truly DON'T want to know. It's all very scary. I just want to live and enjoy the precious moments I have here on earth. None of us are promised tomorrow and I am NOT looking forward to the day they say I need a stent or bypass, but truth is we may never need that- we could live to be in our 90's with this awful disease (that's my prayer) or we may need intervention. The good news is YOUR following up closely and you know where you stand with your heart- so your already ahead of the game!! Knowing is power- so many walk around not knowing and can't change their lifestyle and we have been handed the golden ticket to make changes and extend our life if we so choose- and with all of this medical technology you will live to be an old being!!! CHEERS!! YOU GOT THIS!!! Be positive and stay positive- worrying and STRESS in my belief are the number one killer!! Not heart disease!! Cheers to 43 to both of us! ( July for me) 🙂

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I was over on the High Coronary Calcium Score: How do others feel emotionally? thread for awhile after receiving a CAC of 1444 in December of 2022. The first cardiologist I met with suggested I swamp myself with statins or go home and get my affairs in order. So my wife and I flew to Cleveland and met with one of the top interventional cardiologists. His bedside manner was not any better than the first, but he did say that a CAC under 400 gives you a 10-year risk of a cardiovascular event as 6%, and anything above that at 12%. Or put another way, I have an 88% chance of NOT having a cardiovascular event.
Naturally, he wanted to swamp me with statins too. Since I had no obvious signs of chest pain or such, he had no interest in ordering any type of testing. To him, it was just a number.
Less we forget the JAMA meta study published on March 14, 2022, out lining how ineffective statins are in decreasing mortality on an absolute basis:
https://jamanetwork.com/journals/jamainternalmedicine/fullarticle/2790055
Both cardiologists that I saw were incensed by this paper and completely dismissed the findings. Their conclusion is that the "alignment" of the math used between the studies in the meta analysis had to be wrong to come up with such a conclusion because "stains have been proven to save lives!" I have never been yelled at by a doctor, but in both situations that was the case.
I read the study. I have the math background to understand the alignment methods they used, and I dont think they were off of the mark at all.
I have Celiac Disease, and absorption issues make taking a statin difficult if not impossible because of the permanent damage to the gut. I did try a stain and got sick as a dog the first dose. There is a paper on the subject outlining the difficulties of heart meds for Celiacs, but out of reach to site it at the moment.
So the cardiologist solution is to keep going up the drug food chain into using non-statin cholesterol suppression, ultimately going to an injectable if all else fails.
Right
I asked both cardiologists what I could do based on an inflammation model, not a cholesterol model, and I was told to get with the program on cholesterol. It makes no sense given that I also have Sjogrens Syndrome, which is an inflammatory disease by definition. It makes me wonder how many other people have inflammatory based diseases with high CAC scores, and it is just overlooked.
I am not sure if I am going to keel over and die of heart disease any time soon, but when the worry and cure are worse than the bark and the bite, it all seems to be counterproductive. The open question is whether the JAMA paper is correct. If it is, what do cardiologists really have beyond statins and cholesterol models? Actually, quite nothing. And so they cling to it.
Man, that is an upsetting notion, isnt it? That a pharmacy full of pills cant make us better and an entire segment of medicine is off course?
Pete

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santafepete,

It's reasonable to be upset if there is no clear answer - I get it.

I too have consulted with a couple of PCPs and a couple of interventional cardiologists - in each case, they all agree on the advisability of a statin to lower LDL and triglycerides. There are many studies that support this - and, the only way known right now for most patients appears to be a statin.

I'm taking a statin with no side effect that I know of, and I continue to take Vascepa.

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