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.

Hi, I was also devastated to discover that my calcium score is high and that there is nothing I can do about it other than try not to let it get higher. I'm a 71-year-old female and the fact that I'm old is no comfort -- I started to feel like a ticking time bomb. I don't think that test was particularly helpful, the stress of knowing the result has to be detrimental to my health and now every little pain anywhere in my torso starts me wondering. Anyway, I wish you well, and I hope someone invents a plaque thinner for us. Meanwhile, it's an excuse to live our best lives while we can, right?

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Hello @steveny and welcome to Connect. I can imagine your surprise at finding out about a high calcium score. Sometimes it is frustrating when we don't feel doctors take our concerns seriously.

When we don't feel that our concerns are being taken seriously by a doctor, we do have options. We can stay with that doctor and ask for more information or perhaps change doctors and get a second opinion.

We have another discussion on Connect about high calcium scores. Here is the link to that discussion group,
https://connect.mayoclinic.org/discussion/very-high-calcium-score/?commentsorder=newest#chv4-comment-stream-header.

In this discussion, you will meet members who have posted about their calcium scores and how they adjust and/or follow up with their doctor.

I'm wondering how the calcium score was determined. Did you have a CT scan of the heart or were only blood tests done? Did your cardiologist suggest follow-up blood work or perhaps a stress test?

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Hi. Do you regularly take TUMS or other calcium-based antacids or take calcium supplements?
I was shocked at my score also which led to a lot of research. I finally found several medical journal articles that noted that our bodies can and do absorb and process calcium via our diet BUT DO NOT absorb and process calcium from supplements or antacids so calcium from those sources are stored all over our bodies including in our bloodstream.
I am a lover of very spicy food so o used to eat a lot of evening meals very spicy then have to resort to TUMS to keep heartburn away at night.

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I clearly remember the first days after my score came back (407 at age 50), and being afraid to even get off the couch for fear of dropping over dead. I’ve done a lot of reading and listening in the past year, and you will normalize fairly quickly. Talk to everyone you can, it helps. You’ll get frustrated that there are very vocal advocates on both sides of the diet spectrum (vegan vs. keto, to oversimplify) so land on whichever makes your body “feel” healthier - you’ll be able to tell. And this test is still fairly like a shiny new toy - I’m not downplaying it’s validity or even the correlation with potential future events, but some of the cardiologists I’ve spoken to don’t even order the test because they don’t put much faith in what it really tells you. I would bet most of your friends never even heard of this test, and it helps to realize that there are millions of people who are likely in worse or same condition, we just have more info - we are not more likely to drop over than the ones who never heard of the test. I’m rambling a bit now, but this quote always helps me when I get scared - “stopping yourself from living won’t stop yourself from dying.” Feel free to reach out if you’d like to chat more.

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@hopeful33250

Hello @steveny and welcome to Connect. I can imagine your surprise at finding out about a high calcium score. Sometimes it is frustrating when we don't feel doctors take our concerns seriously.

When we don't feel that our concerns are being taken seriously by a doctor, we do have options. We can stay with that doctor and ask for more information or perhaps change doctors and get a second opinion.

We have another discussion on Connect about high calcium scores. Here is the link to that discussion group,
https://connect.mayoclinic.org/discussion/very-high-calcium-score/?commentsorder=newest#chv4-comment-stream-header.

In this discussion, you will meet members who have posted about their calcium scores and how they adjust and/or follow up with their doctor.

I'm wondering how the calcium score was determined. Did you have a CT scan of the heart or were only blood tests done? Did your cardiologist suggest follow-up blood work or perhaps a stress test?

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Thanks. The score came from a CT scan of the heart. As I’d mentioned above, my blood work came back with borderline high cholesterol and the cardiologist then suggested doing to CT calcium scan, saying he expected it would show nothing but thought it was worth doing just in case.

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@steveny

Did your doctor recommend follow up blood work or perhaps a stress test in the future?

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@sjy70

I clearly remember the first days after my score came back (407 at age 50), and being afraid to even get off the couch for fear of dropping over dead. I’ve done a lot of reading and listening in the past year, and you will normalize fairly quickly. Talk to everyone you can, it helps. You’ll get frustrated that there are very vocal advocates on both sides of the diet spectrum (vegan vs. keto, to oversimplify) so land on whichever makes your body “feel” healthier - you’ll be able to tell. And this test is still fairly like a shiny new toy - I’m not downplaying it’s validity or even the correlation with potential future events, but some of the cardiologists I’ve spoken to don’t even order the test because they don’t put much faith in what it really tells you. I would bet most of your friends never even heard of this test, and it helps to realize that there are millions of people who are likely in worse or same condition, we just have more info - we are not more likely to drop over than the ones who never heard of the test. I’m rambling a bit now, but this quote always helps me when I get scared - “stopping yourself from living won’t stop yourself from dying.” Feel free to reach out if you’d like to chat more.

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Really appreciate this. Yes, that’s been my basic initial reaction too, just a sense that an imminent expiration date has suddenly been put on my life.

But like I said, I’m trying to balance this with the manner/attitude of the cardiologist as he conveyed the info to me. I left the office based on how casual he seemed not sure whether this was very serious news or not. He just matter of factly told me he’d put me on a statin, that I should take baby aspirin, and that I should do a second CT scan, this time with contrast. But his tone wasn’t heavy, like he was giving me life-altering news or really trying to impress the gravity of this on me. It was only when I searched around online after that I saw how bad the number seems to be.

So I called his office yesterday and left a message saying I was very concerned with what I had been learning about the score and he called me back from his vacation late last night. I missed the call so I only have a voicemail but he said:

“Hi, it’s Dr. Xxxx returning your call. Listen, there is nothing for you to be concerned about. Ok? Really. You have calcium on your arteries. It’s plaque. It’s not a blockage. We’re going to do a scan at some point as a baseline. If I thought it was really an emergency, I would have sent you straight to the hospital for an emergency scan. This is just for a baseline and the truth is, it isn’t even necessary. But I would like to have it for something to compare you to in the years to come. Again, nothing to worry about at all. We’re just identifying you as someone who needs a little more aggressive attention.”

So….I don’t know? I hear what you’re saying about docs apparently having very different understandings of what this test means. I can’t see mine doesn’t take it seriously. After all, the only reason I had the calcium test in the first place was because he suggested it. I didn’t even know what it was. And he is very well credentialed. So I feel like maybe I should take some reassurance from him saying something like this. And I’ve reviewed the other thread here that the moderator suggested; striking how many in there report extremely high scores but no issues on stress tests and no apparent blockages.

But then again, the stats I can find seem pretty clear. 90%+ of people my age get a score of 0 and mine is nearly 400. And the relationship between a score like that and heart attack/stroke seems strong. But presumably my cardiologist knows this too. Again, it was his idea to do the test.

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@hopeful33250

@steveny

Did your doctor recommend follow up blood work or perhaps a stress test in the future?

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The recommendation is to have another CT scan, this time with contrast. That is supposed to happen early next month.

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@dstuemky

Hi. Do you regularly take TUMS or other calcium-based antacids or take calcium supplements?
I was shocked at my score also which led to a lot of research. I finally found several medical journal articles that noted that our bodies can and do absorb and process calcium via our diet BUT DO NOT absorb and process calcium from supplements or antacids so calcium from those sources are stored all over our bodies including in our bloodstream.
I am a lover of very spicy food so o used to eat a lot of evening meals very spicy then have to resort to TUMS to keep heartburn away at night.

Jump to this post

I don’t take Tums or calcium supplements. The cardiologist also said to me that this is not the result of calcium consumption. He was pretty emphatic that he thinks it’s mainly a genetic thing for me.

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Hi steveny,

So, my story is that I did a CAC test when I was 65 (68 now) just because they were inexpensive - no other reason. Since I have had moderately high blood pressure (completely controlled with irbesartan) for years, I had just started on atorvastatin. I have always - always - been higher than normal for glucose/A1C tests, but only a few pounds overweight - even during my 20 years as a Navy pilot. Total cholesterol always normal, but LDL towards higher range.

My score was 1352! So, in theory it was high when I was your age) - some folks note 10-15% per year increase as common. I was on vacation in Europe so didn't get the letter until I returned - about a month later.

In to see a cardiologist - had never seen one. He said, "you don't present as a heart patient" ... then stress test within a couple of days. METS 10.3 and 9 on the Duke rating with no ischemia. BTW, both my hips were replaced over the last 20 years - but no one can tell by the way I walk - just returned from another trip to Portugal where my wife and I carried backpacks and suitcases on public transportation, and logged 8-12 miles a day walking.

Also got updated blood work, and the statins were doing their thing - LDL and triglycerides dropped by half - both to around 50 and have remained in the 40-50 range since then. Total cholesterol 110-115.

Added vascepa to hopefully stabilize the plaque - no side effects from either vascepa or the statin.

My cardiologist was, as yours, rather matter of fact - following the first stress test, and confirming a few weeks ago - "We'll get another stress test in 2023."

Now, my negative sense is that the medical establishment really know their statistics and "standards of care" - and, given my complete lack of symptoms, and a very good stress test, they are on the fence about doing anything. Nonetheless, I am starting the push through my PCP to get some additional testing - this is usually a CT Angiogram (CTA).

Net - many folks probably have high CAC scores, and it is certainly agreed this is a marker, it may not indicate immediate danger ... unless one has additional medical factors.

You should, based on everything I've read, get a stress test. There should be metrics and an assessment from that to consider.

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