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.

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@steveny

Glad for that clarification on the Lp(a) score. I don't know enough about the particle sizes, but otherwise seems like what we've both been saying about our situations -- just doesn't make sense.

Have you considered also getting a Cleerly scan? Not sure if you are familiar with them, but they are new to the scene but have some impressive brain power behind them -- some of the best-credentialed CAC researchers. A key concept they have is to use CT-angio to quantify arterial plaque by type/stability, and to make this the benchmark of treatment. Here's a video they put up in May explaining how it works and featuring some very interesting data:
https://cleerlyhealth.com/transforming-cardiac-care/session-3
Long story short: I had a CT-angio a few weeks ago, and the results were characterized differently by two cardiologists who looked at them. So I got one of them to order the Cleerly analysis of the CT-angio, which in theory will take the guessing out of it and show me (and the doctors) exactly what I'm dealing with. Been waiting for the results; been told I should have them by tomorrow.

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Thanks. steveny.

I getting set to do stress with echo - will push for cta next!

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@keithl56

I think it is important to realize that a high CAC score may indicate problems beyond coronary considerations. When my cardiologist called me panicked by my over 1000 score the same afternoon that I had the test I thought I was doomed , especially after finding out that my risk of an MI was 20-25% per year. I'm still haer 4+ years later and am still largely asymptomatic. My LDL is only 48 and total cholesterol is 115 thanks to statins and ezetimibe.

However, if your coronary arteries are affected it is very possible that the same mechanism is having an impact on other systems. In my case I have bilateral carotid blockages (not yet to the level that needs intervention, last scan only 39%). My major problem is cerebral microvascular ischemia. The same plaque that is clogging my coronary arteries is slowing killing my brain. Numerous head MRI's show hyperintensities where vessels are are being blocked with brain cell death, as well as multiple lacunar strokes. These were found after TMI's and other neurological issues.

I would encourage anyone with high CAC to be vigilant and aware of these other risks, as well as PAD (which thankfully I don't have!) At least in the case of carotid stenosis there are surgical interventions which can address the problems. Unfortunately, at this time there is no way to roto-root your brain so I just have to live with my white matter disease.

I am 65 and was diagnosed at 61. At least I'm still posting, dead men don't post.

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Thank you for your post. I am currently not formally diagnosed and trying to understand what is happening. Currently switched isosorbide mononitrate to nighttime taking at same time as ezetimibe because I can tell the ezetimibe helps cognitively but whatever is going on around the kidneys/GI I can’t tolerate it. Your straight-forward explanation helps me understand and not feel alone (so many other symptoms in this “marathon” my doctors call it-this is my current hurdle). I have not been able to tolerate medications and go in for every other week lipid apheresis treatments so my risk factors are not under control. Keep posting! Oh, I am 57 now.

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steveny,

Do you have results from the CTA from Cleery?

I was reviewing options - the CTA is simply another term for Coronary CTA (CCTA), correct? Cleery mentions CCTA on their site.

There is a cardiologist showing on the Cleery site about 60 miles away, but it does not note if their testing is any different/better - or, this is just a cardiologist who automatically sends the results of a CTA? If the latter, then I can simply have scan data sent to Cleery?

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@mayoconnectuser1

steveny,

Do you have results from the CTA from Cleery?

I was reviewing options - the CTA is simply another term for Coronary CTA (CCTA), correct? Cleery mentions CCTA on their site.

There is a cardiologist showing on the Cleery site about 60 miles away, but it does not note if their testing is any different/better - or, this is just a cardiologist who automatically sends the results of a CTA? If the latter, then I can simply have scan data sent to Cleery?

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BTW - while reviewing older records, I found a brachial ASI test done in 2014. While this is a not a particularly useful test, it generally points to artery flexibility, which relates to plaque build up. My result was 61, which is in the range of "normal."

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@mayoconnectuser1

BTW - while reviewing older records, I found a brachial ASI test done in 2014. While this is a not a particularly useful test, it generally points to artery flexibility, which relates to plaque build up. My result was 61, which is in the range of "normal."

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Yes, I got the results. It’s an interesting report - a visual rendering of each artery showing where there is plaque, how much there is, and how calcified it is. They also measure the plaque volume overall and by category- calcified, non-calcified, and low density non calcified.

My total volume is 245 mm3 — 2/3 of it (162 mm) is calcified and the other 1/3 is non-calcified. It says there is 0 low density non-calcified. My hope is that this represents good news in that it’s better to have calcified than non-calcified and everything I’ve seen suggests low-density non-calcified is even worse. But I have scheduled a consultation with Matthew Budoff at UCLA, who is affiliated with Cleerly and whose name is all over the various CAC research out there. I think he’s probably the best person I could turn to for interpretation of the report. My goal is also to see if he has a proposed strategy for using this as a benchmark and do periodic re-scans to measure progress. This is still obviously a very new technology, so I’ll also ask for a candid assessment of what kind of limits there are on interpreting it. Still, it was useful for me to see this report; better than just having a cardiologist describe in broad terms the CT-angiogram report.

In terms of how to get it done, yes, you just need to get a CT-angiogram (I think CTA and CCTA are the same). Then you need to have it sent to Cleerly for analysis. At least in NY, where I am, this did require a doctor to put the request in both for the scan and to send it to Cleerly. I don’t know if it’s different in other states though.

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@steveny

Yes, I got the results. It’s an interesting report - a visual rendering of each artery showing where there is plaque, how much there is, and how calcified it is. They also measure the plaque volume overall and by category- calcified, non-calcified, and low density non calcified.

My total volume is 245 mm3 — 2/3 of it (162 mm) is calcified and the other 1/3 is non-calcified. It says there is 0 low density non-calcified. My hope is that this represents good news in that it’s better to have calcified than non-calcified and everything I’ve seen suggests low-density non-calcified is even worse. But I have scheduled a consultation with Matthew Budoff at UCLA, who is affiliated with Cleerly and whose name is all over the various CAC research out there. I think he’s probably the best person I could turn to for interpretation of the report. My goal is also to see if he has a proposed strategy for using this as a benchmark and do periodic re-scans to measure progress. This is still obviously a very new technology, so I’ll also ask for a candid assessment of what kind of limits there are on interpreting it. Still, it was useful for me to see this report; better than just having a cardiologist describe in broad terms the CT-angiogram report.

In terms of how to get it done, yes, you just need to get a CT-angiogram (I think CTA and CCTA are the same). Then you need to have it sent to Cleerly for analysis. At least in NY, where I am, this did require a doctor to put the request in both for the scan and to send it to Cleerly. I don’t know if it’s different in other states though.

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Back from consult with my PCP - he's ordering a CTA, TBD on getting data to Cleery (may have to pay for that), Carotid Artery test, Abdominal Aortic Aneurysm test, Peripheral Arterial Disease screen, and a retake on the CAC.

His take on the Advanced Lipid panel/Cardio IQ was that the numbers were great.

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Hi Guys, I'm new to the thread. I'm 56 and workout every day, having done major triathlons and crossfit, now just a gym rat with low body fat, eat well and hardly drink. Just had a CT scan yesterday and a 2,854 CAC score plus a 4.3cm Ascending Aortic Thoracic Aneurysm (AATA). I do have pectus excavatum (indenting of the chest) a birth defect that I've always considered a badge of honor but it does affect normal heart function / circulatory function. But f**k them if they can't take a joke. Dr. ordered a stress test and an echo. I'm thinking the CAC score is helpful but doesn't tell the whole picture. CAC with AATA is a bit disconcerting but I'm also hoping it can all just be managed. PS, I love weight lifting and running high intensity, both blood pressure inducing. Wondering if anyone feels the same.

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@steveny

Just to follow-up - I've scheduled an appointment with a second cardiologist for this week, since mine is on vacation through the end of the month and I now have many questions and would like to get some different expert perspectives on options. (I mentioned earlier in this thread that my current cardiologist told me of the high calcium score just before leaving for vacation; after I read up on what this apparently means, I called his office and asked them to convey to him that I was very concerned. He did call from his vacation and leave a voicemail *emphatically * telling me -- three times -- that it was nothing for me to worried about, that it was "nothing for me to worry about" and that he was "just identifying me as someone who needs a little more aggressive attention.")

I did get the full results sent over from his office today. They are:
Agatson score: 397
Left main: 69
LAD: 256
LCX: 72
RCA: 0

I have since Thursday been on 20mg of Crestor. I am trying to determine what dietary changes make the most sense; there is just so much contradictory info out there on that front. And I'm trying to determine if there are additional medications to push for. Today, for example, I found a lot of info on PCSK9 inhibitors. If I'm reading it right, the idea is that combined with high-dose statins, they have been shown to potentially reduce plaque? This seems like a huge deal if so. I saw in one review of studies that the "target" range for achieving plaque reduction is LDL <80 and HDL >45.

On top of all of this, I'm just trying to figure out how alarmed I should be and how dramatically I need to change my life, especially when it comes to diet.

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Hi Steveny-this is the first time I have posted here. I am sure you have more info now as this post was 2 weeks ago. Wondering how you made out?
I am a 55 yo (no previous medical history and quite healthy) who’s score was 797 mostly in LAD (the widow maker). Was 80% blocked and ended up with 2 stents 6 weeks ago. I have the gene issue - Lipoprotein a - and my level was outrageous at 460. On Crestor 20mg (having issues with higher doses), Zetia, aspirin, brilinta (anti platelet)…
Just trying to figure out med regimen and what’s next here. Maybe the Inhibitor injections. Your situation was similar.

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@wynstermom

Hi Steveny-this is the first time I have posted here. I am sure you have more info now as this post was 2 weeks ago. Wondering how you made out?
I am a 55 yo (no previous medical history and quite healthy) who’s score was 797 mostly in LAD (the widow maker). Was 80% blocked and ended up with 2 stents 6 weeks ago. I have the gene issue - Lipoprotein a - and my level was outrageous at 460. On Crestor 20mg (having issues with higher doses), Zetia, aspirin, brilinta (anti platelet)…
Just trying to figure out med regimen and what’s next here. Maybe the Inhibitor injections. Your situation was similar.

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Hi, I don't know about meds. I'm on 40 mg of lipitor but have yet to figure stuff out to be honest.
Thanks,
Jeff

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@jdyment

Hi, I don't know about meds. I'm on 40 mg of lipitor but have yet to figure stuff out to be honest.
Thanks,
Jeff

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Jeff you mention a doc ordering tests so I presume you are being referred to a Cardiologist? That Cardiac Artery Calcium score is quite high even with your athleticism.

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