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

An update: I saw the second cardiologist today. He was surprised my score was so high (397) at my age (42) — and especially when he looked at my full blood panel. Total cholesterol at 210, HDL (good) cholesterol is 88; LDL is 110; no diabetes or pre-diabetes; triglyceride level is 43; and CRP of 0.59.

He said he never would have expected someone with this profile to have a score anywhere near this. Gave me hope for a second that maybe, somehow there was an error with the test, but he reinforced that the calcium scan is extremely accurate and reliable.

I told him I was having trouble squaring the dire implications of everything I’ve read about a score like mine with my original cardiologist’s fairly casual attitude toward it. He told me the reality is probably in between my cardiologist’s attitude and my own.

Which means it’s serious. But also that it’s been there for a while; he said it’s probably been building in me for 10 years. Genetics obviously a heavy factor. His main points of emphasis going forward:
* Stress test scheduled for two weeks from now
* Agreed with first cardiologist putting me on Crestor. Said idea will be to smash my LDL below 70 and that if we need to add other drugs (zetia or PCSK-9 inhibitor maybe) into the mix eventually we will. But he was confident that by doing this we will decrease *soft* plaque and limit its future development. Said the calcified plaque will not go away and that the statin might even calcify some more existing plaque and raise my calcium score further.
* Emphasized diet - idea of largely sticking to non-starchy veggies, greens, low carb, some fish and chicken, but try to avoid cheese and cut out fried foods etc. I described what I’d been eating and he thought it was likely helping to push the calcium score up.

My concern is that even with my crappy diet, this calcium score number is crazily high. And it’s not like I have an equally high LDL number that would easily explain it. So I fear that lowering LDL maybe won’t do as much as he’s hoping. But what else can I do? Obviously trying to focus on transitioning to a very different diet. It will be a major adjustment for me, but if it’s what needs to be done I’ll do it.

Of course, that’s my other concern: How do we really know what is and isn’t working? The calcium score won’t be going down, and probably will be going up. I asked him what metrics we should be measuring going forward and he said LDL is the main one - he really believes smashing it under 70 will reverse soft plaques and stop new plaque formation, along with diet. I’m just not sure how this will be measured, again, given that statins will likely raise the calcium score.

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I try to keep my focus on all the things I can control: diet, exercise, 7-8 hours sleep, low stress, and always remembering to take my meds. These are the things you can do that can actually freeze the progression of the disease.
Look at it this way: you caught it early and you're doing the best you can to control it. It's not a death sentence.

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@steveny

An update: I saw the second cardiologist today. He was surprised my score was so high (397) at my age (42) — and especially when he looked at my full blood panel. Total cholesterol at 210, HDL (good) cholesterol is 88; LDL is 110; no diabetes or pre-diabetes; triglyceride level is 43; and CRP of 0.59.

He said he never would have expected someone with this profile to have a score anywhere near this. Gave me hope for a second that maybe, somehow there was an error with the test, but he reinforced that the calcium scan is extremely accurate and reliable.

I told him I was having trouble squaring the dire implications of everything I’ve read about a score like mine with my original cardiologist’s fairly casual attitude toward it. He told me the reality is probably in between my cardiologist’s attitude and my own.

Which means it’s serious. But also that it’s been there for a while; he said it’s probably been building in me for 10 years. Genetics obviously a heavy factor. His main points of emphasis going forward:
* Stress test scheduled for two weeks from now
* Agreed with first cardiologist putting me on Crestor. Said idea will be to smash my LDL below 70 and that if we need to add other drugs (zetia or PCSK-9 inhibitor maybe) into the mix eventually we will. But he was confident that by doing this we will decrease *soft* plaque and limit its future development. Said the calcified plaque will not go away and that the statin might even calcify some more existing plaque and raise my calcium score further.
* Emphasized diet - idea of largely sticking to non-starchy veggies, greens, low carb, some fish and chicken, but try to avoid cheese and cut out fried foods etc. I described what I’d been eating and he thought it was likely helping to push the calcium score up.

My concern is that even with my crappy diet, this calcium score number is crazily high. And it’s not like I have an equally high LDL number that would easily explain it. So I fear that lowering LDL maybe won’t do as much as he’s hoping. But what else can I do? Obviously trying to focus on transitioning to a very different diet. It will be a major adjustment for me, but if it’s what needs to be done I’ll do it.

Of course, that’s my other concern: How do we really know what is and isn’t working? The calcium score won’t be going down, and probably will be going up. I asked him what metrics we should be measuring going forward and he said LDL is the main one - he really believes smashing it under 70 will reverse soft plaques and stop new plaque formation, along with diet. I’m just not sure how this will be measured, again, given that statins will likely raise the calcium score.

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@steveny - I sense the anger you feel now- that was my reaction when I recently found out that I had calcifications in the main coronary artery, LAD. My calcium score was not too high, but to find out that I’m a higher risk really made me mad! My father had high cholesterol, diabetes and coronary artery disease. I have made a big effort my entire life to try to prevent this. Healthy eating, regular exercise and started statins early on, zetia added later on.
As mentioned, inflammation is a major factor. Unfortunately, I developed autoimmune disease with chronic inflammation for years, as well as Diabetes Type 2. I lost 45 lbs and diabetes improved.
We are lucky to have modern medicine to guide us through this genetic mine field! I decided to do the best I can, follow all advice and do all recommended screening and hope for the best.
My husband has the same type of family history and started on statins early after he developed angina in his 40s. He did very well until 10 years ago, at age 67, when he needed a quadruple bypass. He never had symptoms. He is still doing well.

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@steveny

An update: I saw the second cardiologist today. He was surprised my score was so high (397) at my age (42) — and especially when he looked at my full blood panel. Total cholesterol at 210, HDL (good) cholesterol is 88; LDL is 110; no diabetes or pre-diabetes; triglyceride level is 43; and CRP of 0.59.

He said he never would have expected someone with this profile to have a score anywhere near this. Gave me hope for a second that maybe, somehow there was an error with the test, but he reinforced that the calcium scan is extremely accurate and reliable.

I told him I was having trouble squaring the dire implications of everything I’ve read about a score like mine with my original cardiologist’s fairly casual attitude toward it. He told me the reality is probably in between my cardiologist’s attitude and my own.

Which means it’s serious. But also that it’s been there for a while; he said it’s probably been building in me for 10 years. Genetics obviously a heavy factor. His main points of emphasis going forward:
* Stress test scheduled for two weeks from now
* Agreed with first cardiologist putting me on Crestor. Said idea will be to smash my LDL below 70 and that if we need to add other drugs (zetia or PCSK-9 inhibitor maybe) into the mix eventually we will. But he was confident that by doing this we will decrease *soft* plaque and limit its future development. Said the calcified plaque will not go away and that the statin might even calcify some more existing plaque and raise my calcium score further.
* Emphasized diet - idea of largely sticking to non-starchy veggies, greens, low carb, some fish and chicken, but try to avoid cheese and cut out fried foods etc. I described what I’d been eating and he thought it was likely helping to push the calcium score up.

My concern is that even with my crappy diet, this calcium score number is crazily high. And it’s not like I have an equally high LDL number that would easily explain it. So I fear that lowering LDL maybe won’t do as much as he’s hoping. But what else can I do? Obviously trying to focus on transitioning to a very different diet. It will be a major adjustment for me, but if it’s what needs to be done I’ll do it.

Of course, that’s my other concern: How do we really know what is and isn’t working? The calcium score won’t be going down, and probably will be going up. I asked him what metrics we should be measuring going forward and he said LDL is the main one - he really believes smashing it under 70 will reverse soft plaques and stop new plaque formation, along with diet. I’m just not sure how this will be measured, again, given that statins will likely raise the calcium score.

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If I may suggest, it might be helpful to ask your doctor if it is appropriate to have your lp(a) tested as that can be an outlier that can cause high calcium scores. My typical lipid panel looks normal but my lp(a) is high and is a significant cardio risk factor.
Wishing you well.

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@azj

If I may suggest, it might be helpful to ask your doctor if it is appropriate to have your lp(a) tested as that can be an outlier that can cause high calcium scores. My typical lipid panel looks normal but my lp(a) is high and is a significant cardio risk factor.
Wishing you well.

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Thank you. I’ve had lots of bloodwork done but can’t find any Lp(a) result, so I don’t think it’s been tested. Just reading up on it now; does seem like something to check for (just not sure what to do if it were to be high - looks like no formal treatment yet developed?)

Out of curiosity, do you also have a high CAC score? Thanks again for the suggestion.

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@azj

If I may suggest, it might be helpful to ask your doctor if it is appropriate to have your lp(a) tested as that can be an outlier that can cause high calcium scores. My typical lipid panel looks normal but my lp(a) is high and is a significant cardio risk factor.
Wishing you well.

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Actually, looking closer, I do have test results for apolipoprotein-a1 and apoplipoprotein-b:
A1: 155 (range: 100-200 mg/dl)
B: 78 (range: 50-155 mg/dl)
Ratio: 0.46

I’m seeing lots of info that this ratio is very predictive of coronary disease — and my score based on the info I’m finding falls into the low risk/normal category. (>.77 ratio seems to be the cutoff)

My understanding is that apo-a and -b are related to Lp(a)? Does this sound right? If they are both in the normal range, does that indicate that Lp(a) likely is too?

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@azj

If I may suggest, it might be helpful to ask your doctor if it is appropriate to have your lp(a) tested as that can be an outlier that can cause high calcium scores. My typical lipid panel looks normal but my lp(a) is high and is a significant cardio risk factor.
Wishing you well.

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Sorry for all the replies to this, but upon looking even closer at all of my bloodwork I **did** have the LP(a) test and it came back normal, low if anything "<6.00" with a reference range of 10-30 mg/dl.

So really besides slightly elevated LDL (it's been between 100 and 110 in just about all of my bloodwork going back at least a few years), my lipid profile has zero red flags in it. And yet I just popped at 397 calcium score at age 42.

I'm tempted to ask if there could be any error here, or at least if the number could somehow be a lot less 397 while still greater than 0. I do have a CT scan from a few years ago for another issue that incidentally showed the heart; the radiologist noted "mild vascular calcifications." I guess that should have been a warning sign that got me sent to a cardiologist then, but the radiologist didn't make it seem alarming and the doctor didn't even mention it, and I had no idea that there was this kind of significance to any kind of calcification being present at my age. So I guess I know based just on that that I definitely have some calcification and plaque. But again with the lipid profile being good otherwise, how one earth could it be 397?

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@neilyounger

I try to keep my focus on all the things I can control: diet, exercise, 7-8 hours sleep, low stress, and always remembering to take my meds. These are the things you can do that can actually freeze the progression of the disease.
Look at it this way: you caught it early and you're doing the best you can to control it. It's not a death sentence.

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I want to add one more thing...
When I went to my doctor in panic because of my high Coronary Calcium score (1160), he was calm and said my condition was "manageable" and added, " you can still live a long life and die of something else". If I get anxious from time to time, I think about what he said, and it calms me down.
I hope this helps!

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@neilyounger

I want to add one more thing...
When I went to my doctor in panic because of my high Coronary Calcium score (1160), he was calm and said my condition was "manageable" and added, " you can still live a long life and die of something else". If I get anxious from time to time, I think about what he said, and it calms me down.
I hope this helps!

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Appreciate the encouragement. Been a week since I found out about this and already making big dietary changes. I will say that the statin also definitely makes me more tired, which has helped me with sleep, although my 3-mile run is *much* tougher to get through since I started taking the statin (time down 4 minutes, and totally drained by the end in a way I wasn't just a week ago). For me, the stress reduction part has so far been the hardest/impossible. This news has consumed me and put a massive cloud over everything I do. It's on my mind constantly and I just find myself basically just grappling with the idea of imminent sudden death in every situation I'm in. I just can't believe I have this much plaque in me already. Trying to find a way to think positively about this. Yes, being proactive and trying to address it is a good way to channel energy, and I'm trying to do that. I just have read enough to give me some real doubts about whether all of that will make a big difference in the face of my genetic load.

Out of curiosity, what age were you when you got the 1,170 score and how long have you been dealing with this?

Thanks again for the reply.

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@steveny

Appreciate the encouragement. Been a week since I found out about this and already making big dietary changes. I will say that the statin also definitely makes me more tired, which has helped me with sleep, although my 3-mile run is *much* tougher to get through since I started taking the statin (time down 4 minutes, and totally drained by the end in a way I wasn't just a week ago). For me, the stress reduction part has so far been the hardest/impossible. This news has consumed me and put a massive cloud over everything I do. It's on my mind constantly and I just find myself basically just grappling with the idea of imminent sudden death in every situation I'm in. I just can't believe I have this much plaque in me already. Trying to find a way to think positively about this. Yes, being proactive and trying to address it is a good way to channel energy, and I'm trying to do that. I just have read enough to give me some real doubts about whether all of that will make a big difference in the face of my genetic load.

Out of curiosity, what age were you when you got the 1,170 score and how long have you been dealing with this?

Thanks again for the reply.

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I was 62 at the time. I hadn't even heard of the test but a doctor friend told me about it and suggested I take it. I was in pretty good shape but since heart disease runs in my family I thought maybe I'll get a score of 100 or even 150 .
I was devastated when I got the results back. Just like you I thought I could die any day or any moment. I wondered, with a score that high, how was I still alive. Apparently, the plaque was building in my arteries for decades and I had no idea (maybe my score was 397 when I was your age, 42, who knows). Like you, I was obsessed. It was the uncertainty of not knowing if something terrible, some doom, was just around the corner that really freaked me out.
What I did was I started taking Prozac for about 6 months. I needed to get a grip, a boost, and that really helped reduce my anxiety.
It's been about 3 years since my test results and I'm ok now.
You had asked in a previous post if there were any positives. Well, maybe. I've made the lifestyle changes and I think I'm now the healthiest I've been in my entire life.

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@neilyounger

I was 62 at the time. I hadn't even heard of the test but a doctor friend told me about it and suggested I take it. I was in pretty good shape but since heart disease runs in my family I thought maybe I'll get a score of 100 or even 150 .
I was devastated when I got the results back. Just like you I thought I could die any day or any moment. I wondered, with a score that high, how was I still alive. Apparently, the plaque was building in my arteries for decades and I had no idea (maybe my score was 397 when I was your age, 42, who knows). Like you, I was obsessed. It was the uncertainty of not knowing if something terrible, some doom, was just around the corner that really freaked me out.
What I did was I started taking Prozac for about 6 months. I needed to get a grip, a boost, and that really helped reduce my anxiety.
It's been about 3 years since my test results and I'm ok now.
You had asked in a previous post if there were any positives. Well, maybe. I've made the lifestyle changes and I think I'm now the healthiest I've been in my entire life.

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That is a positive note, no question. I'm glad to hear you've successfully made the changes and feel healthy. Interesting about Prozac too. I've also thought about getting on one of those to deal with this. A little worried about the reported weight gain side effects, just given how bad extra weight is for this condition.

I'm wondering if you have had any repeat CAC testing or if there are any other metrics/tests you're using to monitor the situation? This is one of the things I'm trying to figure out -- if I take the statin and make the dietary changes, how will I measure if I'm actually improving my heart risk? This is complicated by the apparent tendency of statins to actually raise CAC by calcifying soft plaque. So in my case, I could do the right things for the next few years and still see a big jump in my CAC score, I think. So what other metrics are there? I guess LDL levels? The cardiologist I saw this week spoke confidently about a low LDL number reducing soft plaque. But can I measure that? Do you?

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