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.

joaf37 | @joaf37 | Jan 8 9:58am

In reply to @questionofbalance "which drug? I've been doing the same with brand Lipitor. It appears perhaps they will pay..." + (show)

Apologies for not getting back to you on your question about which Rx The Rx was referencing wasn't related to cardio issues.

llm2264 | @llm2264 | Apr 16 10:48pm

In reply to @steveny "So I haven't been here in a long time, but I started this thread originally in..." + (show)

@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.

Jump to this post

I have read with great interest all your entries. Between Budoff and Agatston, you are in the best hands.

Vast majority of heart disease overlaps with metabolic disease/inflammatory markers. You do need to get to a root cause which will help with your natural and understandable anxiety.

Metabolic disease: it sounds like you have ruled out pre-diabetes with a kraft test (i know that is part of Agatston's protocol). Those are one time tests, but wondering if you have worn a CGM (like Freestyle) to see how your blood sugar spikes with food?
Other metabolic numbers:
What is your Uric Acid number?
Fasting insulin?
ALT/AST/GGT?
Have you had a DEXA VAT or an MRI to see if you have omental or visceral adipose tissue?

Inflammation: IL-6, IL-1 (beta) (look up all the peter libby and paul ridker videos online from Harvard). Inflammation is a huge driver of atherosclerosis.
Homocysteine (should be less than 6-7)? MPO, Fibrinogen (look up Ford Brewer's videos on Inflammation).

Sleep? Do you wear an oura ring, have you ruled out sleep apnea. Do you track HRV (heart rate variability)?

Ok, here's the big one: stress and hypercortisolemia-- HPA axis. Our social emotional ability to manage stress as well as mental health (anxiety/depression) have a huge impact on our management of cortisol which can cause athersclerosis. You will learn, if you wear a CGM (get without a prescription at diabetes warehouse in FL, Freestyle 3 + app is free or go to Levels) what spikes your glucose and it's not always food! It can be sleep, stress. Hanu is a new company that provides a wearable and gives you feedback on when to breath and destress.

Have you been tested for an autoimmune disease--sometimes the source of inflammation.

Malcolm Kendrick, a UK physician, takes a broader view on heart disease, and focuses more on inflammation and clotting. He wrote a book The clot thickens. Be warned that he rejects LDL as causative (and you have to at least hear him out as 50% of people die of heart attacks with well controlled LDL--it's called "residual risk"). On the opposite side of the fence is Peter Attia, another interesting resource with a podcast that helps too. I also just found Thomas Nero who is a cardiologist with a podcast called Future Pulse (for doctors), but all the interviews are very insightful. Nero interviews a sports cardiologist named Baggich who does a nice job characterizing the marathon runner with heart disease, and what he thinks is going on. Baggich was the head of sports cardiology at Harvard, so no slouch.

some will suggest cutting out all processed foods, seed oils and going lower carb-- I did so and got a huge spike in my LDL BUT interestingly, I had sequential CIMTs (the kind from Cardiorisk that measures intimal thickness and plaque, not flow) and over two years with that diet and soaring LDL (almost 200), my thickness went DOWN BY 13%. (yes I exercised too). So LDL isn't everything evidently. I took no statins. My CAC score is 0.

There is AN answer for why your results went in the wrong direction. Keep looking. Be curious. Don't let doctor's throw up their hands!

You are working so hard to advocate for your health and posting to help others.

llm2264 | @llm2264 | Apr 16 10:55pm

I forgot to mention, there is one very intriguing test that looks at the metabolic and inflammatory biomarkers of pericardial and perivascular fat -- the stuff that probably is responsible for soft plaques-- the Fat Attenuation Index. This is a post processing of your CCTA (they take any CT angiogram image and upload into their software and do an analysis to see if you have localized inflammation). The company is called Caristo and they operate out of Oxford, UK (they are Oxford scientists) and it sounds game changing. If you get Cleerly and an FAI, you should be able to track progress of your disease with cutting edge tools. The problem with them is that I can't find anywhere in the US where they can order this analysis---however Caristo was a speaker at 2023 AHA conference. Thomas Nero has a couple of podcasts where he talks about this--even a podcast with Matthew Budoff talks about it as well.

(p.s. Budoff is in the middle of a very interesting clinical trial with keto-people called lean mass hyper responders, who are fit and have very high LDL, but NO plaque progression (!!) Look it up on youtube). Very intriguing info.

cece425 | @cece425 | Jun 14 10:56am

In reply to @tia50 "Sorry to hear. I have gone between keto and low-fat plant based diets and not much..." + (show)

I too have elevated LP(a) and had to research and ask for it to
be tested myself since my two different cardiologists over time
never tested it. Somewhat high LDL so put me on statins.
That lowered my LDL but LP(A) went up . ( I cut my statin
dosage in half and it still went up. ) Apparently
a genetic condition? Seems to be little information about
it although there is a good cardiology rounds report from
Stanford on line which suggest two medications may be coming
up for FDA approval. Why don't cardiologists do these particle tests
routinely?

dizzyprizzy | @dizzyprizzy | Jun 15 9:07am

In reply to @cece425 "I too have elevated LP(a) and had to research and ask for it to be tested..." + (show)

My score is 50 and my cardio isn't worried. Some people report scores over 200. Apparently there isn't any way to get the calcium out of the blood once it is there. We can make the effort to stop it from accumulating in the blood. Diet, exercise, low sodium diet, D3 helps the mechanism in the body process calcium eaten go to the bones instead of the blood. Just my experience to go on. My calcium hasn't gone up since I started D3 at 2-3, 2000IU pills per day. Good luck. Every body is different.

dnward12 | @dnward12 | Jun 15 10:51am

My score was 132 at the age of 42, it was 2318 at 65. While it sounded dire at 42, I’m still alive and do the gym daily and had no heart issue and now am 67. While some of these statistics seem overwhelming.. try to look at the inverse positive side of the equation.. for example if you have a 15% chance of a heart occurrence over the next 10 years.. look at it as you have an 85% chance of no issue.

Live as healthy as you can, but being overwhelmed with stress over this .. well it’s not healthy either.

Live healthy. Be educated.. but do not be consumed.

lp77 | @lp77 | Jun 16 9:53am

Good advice .
Have you been on a statin ?

mayoconnectuser1 | @mayoconnectuser1 | Jun 16 11:57am

In reply to @dizzyprizzy "My score is 50 and my cardio isn't worried. Some people report scores over 200. Apparently..." + (show)

dizzyprizzy,

Want to make sure we are talking about the same thing.

Many on this forum have CAC (Agatston calcium) scores over 2000. This is measured with a CT scan of one's heart - not a blood test. The accumulation we discuss relates to the calcification of the cholesterol in the heart's arteries - and, uses the Agatston scoring.

Here is a short article - https://www.umms.org/ummc/health-services/imaging/diagnostic/cardiac-calcium-scoring

To my knowledge, D3 does not affect one's CAC (Agatston) score. How are you measuring your calcium?

mayoconnectuser1 | @mayoconnectuser1 | Jun 16 12:02pm

In reply to @dnward12 "My score was 132 at the age of 42, it was 2318 at 65. While it..." + (show)

dnward,

Have you been assessed with remodeling of arteries? Here's an article on the topic.
https://www.jacc.org/doi/10.1016/S0735-1097%2801%2901374-2#:~:text=Positive%20remodeling%20(arterial%20expansion)%20is,atherosclerotic%20disease%20progression%20and%20regression.

dnward12 | @dnward12 | Jun 16 5:15pm

No, this is the first I’ve ever heard of this.

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