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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@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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Tim,

Time to get into it, then, Usual flow is something like:
- CAC ... if high, then
- advanced lipid panel/Cardio IQ ... don't skip this
- stress test with echo
- CT Angiogram ... if abnormal then
- Heart cath to check for flow, and stent if necessary

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@wynstermom

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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Yes, my PCP ordered a stress test and echo. Cardiologist in London here suggested a stress pressure MRI instead. Waiting to hear from Cardiologist in NY however before scheduling.

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@mayoconnectuser1

Tim,

Time to get into it, then, Usual flow is something like:
- CAC ... if high, then
- advanced lipid panel/Cardio IQ ... don't skip this
- stress test with echo
- CT Angiogram ... if abnormal then
- Heart cath to check for flow, and stent if necessary

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Hi Tim, I think a stress pressure MRI solves this given it's 3D and can show everything a stress test, echo and probably a heart cath can do. At least that's what my cardiologist here in London said. Waiting for insurance to kick in. 🙂

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@jdyment

Hi Tim, I think a stress pressure MRI solves this given it's 3D and can show everything a stress test, echo and probably a heart cath can do. At least that's what my cardiologist here in London said. Waiting for insurance to kick in. 🙂

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My understanding is that the "gold standard" continues to be a catheterization as the surgeon can "see" the flow and any restrictions ... but, perhaps MRI is now more in use?

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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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I am someone who can't take statins, so my Cardiologist put me on Rapatha. It's a shot I take every 2 weeks to lower the "bad" cholesterol.
I can empathize with you when it comes to not understanding why something like this, just doesn't seem to be as concerning to the doctor as it is to you. As a friend told me when I had questions about my small vessel spasms, be the squeaky wheel! Get answers, this is your body and your life!

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@mayoconnectuser1

My understanding is that the "gold standard" continues to be a catheterization as the surgeon can "see" the flow and any restrictions ... but, perhaps MRI is now more in use?

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I think it might be because of my 4.3 ascending thoracic aortic aneurysm that was noted as well so the MRI might show both problems with one test. I'll know more after I speak with the doctor.

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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,
In terms of an update, I have now had a consultation with Dr. Matthew Budoff from UCLA. He's a research cardiologist and his name seems to pop up on about half of the papers that I have found online on coronary calcium/plaque. He works with Cleerly and I wanted him to analyze my scan and my broader situation.

It was overall an encouraging session, although obviously with a calcium level like mine at my age, "encouraging" is a relative term. He did think it was relevant that most (2/3) of the plaque I have was deemed calcified by the Cleerly scan. 1/3 was non-calcified, and none was low density non-calcified (the most dangerous by all accounts). It led him to suggest that what happened in me might be the result of a process that was previously more active than it is now, since calcification takes time. Generally, he said, he would expect a different ratio in someone just finding out they have lots of artery plaque -- that there'd be lots of non-calcified and low attenuation, which is earlier stage plaque.

So he said I've clearly had this developing for at least 10 years and also mentioned several times the possibility that, basically, my plaque was created by the extreme level of running I did in my 20's. He talked about studies linking marathon running to high CAC/plaque development and suggested I may have laid down a layer of plaque with my old regimen (I ran 50+ miles/week through my 20s with essentially zero rest days and ended up with "overtraining syndrome," where my body hit a tipping point and my times fell off a cliff because I never allowed proper recovery). He came back to this idea a few times, especially since my other key levels (Lp(a), C-reactive protein, HDL, Triglycerides) are all very good and even my LDL is only barely high. So he felt my situation looked a little different than what he normally encounters and offered encouragement that with statins, diet modifications, aspirin and other things I'm now doing that my risk could be "very low" for 10 years. He recommended a CT angiogram/Cleerly re-scan in a year to see if the situation is stable, actually improving, or getting worse. If it's getting worse, he said, it would mean that we've missed a risk factor and would need to reassess treatment.

Like I said, all of this was encouraging. The discouraging part came two days later. I've been trying to track down all of my random bloodwork from doctors I've seen in the past 10-15 years. And I did find -- after I spoke with Dr. Budoff -- a test from 2017 that measured my IL-8 (interleukin-8) level and found it to be very high -- 94.7 on a scale where 57 is the high end. I have since read up on it and found that IL-8 is an inflammatory cytokine heavily implicated in atherosclerosis. This was quite upsetting to learn, because I think it means we have found one of the "missing" risk factors Budoff was talking about. CRP is generally treated as the all-purpose marker of inflammation when it comes to atherosclerosis, and my CRP is fine, but it turns out the interleukins can play a big role too and that IL-8 can do it independently of CRP.

So the roller coaster continues. I was very eager to buy into Budoff's hypothesis that running my 20's laid down a layer of plaque that was well on its way to stabilizing and that the spigot might essentially be turned off. But I also had a feeling that was wishful thinking and I now strongly suspect that this 2017 blood test -- long after I had stopped running at anything like I used to -- shows that I *do* have the kind of inflammation that can directly cause atherosclerosis. So I think I have my explanation. Or at least have found a critical abnormal marker that suggests this is an ongoing process, not the remnant of something that happened years ago.

So I will continue with the statin and diet/exercise/aspirin regimen and also take aged garlic extract, which Budoff also strongly recommended. But I now believe that, unfortunately, this is a process that is still very much active in me and that my case might be particularly insidious (all of the standard lipid levels come back basically normal, all of the risk calculators put my 10-year risk as basically 0 before the CAC test.....and yet I actually have a *****ton**** of plaque and a very difficult to detect source of inflammation). What is driving *that*? Who the bleep knows? Or cares? I think I've landed in a spot where the medical/research community will have no answers for me in my lifetime.

All I can do is try to stick to this program, remember the better days, marvel at how fast this life has gone, and prepare for the death that awaits me much sooner than I ever imagined.

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Steveny - just caught up on this tread and really worry about your mental well-being and take on the situation but oddly get it. I am not a cardiologist and don’t quite yet understand all the info in this post re inflammatory factors causing plaque build up. (This whole cardiac thing is new to me and I am reading up/trying to understand).
I don’t fully understand your situation, however I do understand that sense of doom. Like we are passed our expiration date. I have the lipoprotein a gene issue (just found out) so a ton of plaque / old or new plague I don’t know. I was blocked 80-90% so they put stents in. Heard from 2 cardiologists they thought I’d need a cabbage. Anyway I feel like I won’t live a long life as well. That I am a ticking time bomb too because the damage is done. I can’t do much to “fix” the plaque there and stents don’t prolong life. Yet the cardiologist said he doesn’t see why I “wouldn’t live a long life” and I don’t understand how he can say that. I am otherwise healthy can’t change much more. Lower levels, keep fats below 30% of diet… but that plaque is there.
I don’t understand it all.
I do know we can get our LDL levels down to 50/60 safely and try the inhibitors (injections).
What are we missing that the docs don’t seem to worry like we are?

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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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Hello back Jeff!
New to this group and thread so taking a bit to follow.
Statins it seems are the first line of defense for any of the plaque issues. Your cardiac calcium score is over 2000? I have heard 1500 but not 2000. It is quite a disconcerting number.
I presume you are being followed by a cardiologist?
Those further tests (Echo, Stress) should offer more information into your situation.
It sounds frustrating and scary… I feel that way. Like I’m past my expiration date. But the cardiologists I have seen seem hopeful. I think we read the journals and stats and see the bad stats, where the docs see the real life people and positive outcomes.
I hope your further testing is more positive. Science is amazing and better/new treatments are always on the horizon! Have faith. Keep us updated. Sending a hug.

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