Extremely high calcium score at 42 - is there any positive here??

I'm sure glad that you're still here. And hope that the doctor learned better patient-communication skills 😏.

When my mother was studying medicine, there was a famous retired doctor who spent his retirement years studying autopsies and the related medical files. He told the students that the most fascinating thing he learned is all of the conditions people clearly had, and never mentioned to doctors, and which 'should' have killed them but didn't even seem to affect them at all. For her, it was proof of the body's innate trend toward healing or 'working around problems.

My cardiologist once explained that bypass surgery came about because doctors studied autopsies and saw how bodies 'make self bypasses' all the time, detouring around obstacles, increasing load on smaller pathways that grow in strength as a result, etc.

That’s exactly how my heart defect was made by my mother during gestation. A bunch of rogue heart cells made their own pathway from the SA Node to the AV Node to form a short circuit complete loop. When a pulse signal gets trapped inside the loop, it commands the right Ventricle to contract as it goes around and around. Then there’s the regular pathway that also commands the right ventricle to pump. So my right ventricle is pumping so fast, like 197bpm, my heart feels like it’s going to explode.

Now my heart is so messed up. There are two pathways for the pulse signal to go thru in each chamber, the main and the secondary. The main pathways in the right and left ventricle are broken, also the pathway that connects the both of them. So the whole bottom of my heart is only working thru the secondaries. You can imagine what’ll happen if any of the three secondaries breaks. Like the song say”Goodbye cruel world, I’m off to see the circus!” And just imagine this poor heart has been keeping me alive since I was born 78 years ago, that’s more than 3 quarters of a century. I guess mom knew what she was doing huh!!!

Well, I just heard from the same cardiologist and I can say his manner hasn't changed....

But maybe it's a good thing. I did the CTR-angio this AM, wasn't expecting results for two days, but he got them this afternoon and he called me. Same manner -- quick, confident, upbeat, absolutely insistent that the result was good, that I should feel tremendously reassured, etc. He said it showed a very small amount of plaque inside the artery - a level he said he'd expect to find in half the people my age, nothing remarkable of worrisome, etc. I asked how this could be with a CAC score of 397 -- shouldn't I be awash in plaque? He made an analogy to to rust on he outside of pipes and said that's where my calcification is - on the outside of the artery. He is very health-conscious and cracked that he has more plaque in his arteries than I do. He said I was lucky to catch this early and that now we know what to do, meaning to treat aggressively with statins, keep LDL below 70, and maintain good diet/lifestyle practices and that he'd probably want to scan again in 3 years. Said he thinks the CAC will rise a little between now and then because of that statin.

I still had many questions, since I've been living on the internet the last few weeks absorbing every stud/paper I could find. But as I've described, he's not the kind of doctor who likes to engage in long dialogues. He bristled when I mentioned that I'd been reading up on this online (I know just about every doctor must hate patients who come in with internet PhDs...) and said, "It's not that I think you're going to find something that's going to trip me up. It's that I know what I'm doing. There's nothing out there on this that I haven't also read, I know exactly how to approach this, I have lengthy experience treating it, and there've been major advances in CT testing capabilities in the last decade that we are taking advantage of." I was able to ask one question about the studies/charts that show massive escalation in heart attack/mortality risk with rising CAC scores and to tell him that I have trouble squaring that with what I'm hearing from him; he responded that the score itself does mean that I have increased mortality risk but that essentially the treatment mitigates it, especially since I don't actually have much plaque in my arteries. He made that point over and over, that there isn't much plaque.

So overall, I found this encouraging, even if it's frustrating to try to get him to answer questions and provide detailed explanations. I've seen enough to know that some doctors just are that way. Maybe he's not a good match for me as a patient long-term because I do get tremendous reassurance from detailed explanations, data and context when I have questions, and I'm just not going to get a ton of that from him. At the same time, though, he does have excellent credentials and a sizable practice that's been around for some time. Plus, he does seem to be cutting edge in terms of his use of CT technology. Like I said, my traditional risk score was <2% and he suggested a CAC test anyway. I didn't even know much about it. And he is affiliated with Cleerly, which is the program started by Dr. James Min with the goal of eliminating heart attacks; Min was previously one of the top researchers in the country on CAC and heart risk imaging and ran the Dalio Institute of Cardiovascular Imaging at NY Presbyterian/Weill-Cornell for years. So despite his brusque manner and all of the frightening studies I've read, I am finding some confidence in this assessment as I let it sink in. I do think this cardiologist is well-versed when it comes to CAC.

That said, I do have another appointment set with a highly recommended cardiologist also here in NYC for later this week - someone who has specialized in imaging and risk stratification. (And who I am told has a reputation for really taking time to talk to patients and help them understand things.) So I will take all of my tests and imaging to him and if his assessment is similar, I do think I'll be feeling much better about things.

My old college statistics course though would say that 78 and still here is way cool and thanks mom!

My doctor mother would remind us, as she did frequently, that the human body is endlessly fascinating and creative about self-accommodating to 'errors'.

Just in case anyone has been following this and finding it useful (or finds this thread later), I wanted to post one more update on my situation. I think this will be the last one.

Basically, I have:

* A lipid profile that looks completely normal (and even good), except for *slightly* elevated LDL

* No direct (parents/sibling) family history of heart attack, but there is some heart disease further out in the family tree (great-uncles on my dad's side, diabetes in my grandfather, bypass surgery for my dad's brother)

* A 10-year event risk score of <2% on all traditional calculators -- meaning that I never met any criteria for getting a calcium test and no doctor ever looked at my bloodwork and thought I might have any issues with my heart

* Nonetheless, a cardiologist this spring suggested that -- for peace of mind -- I pay 100 bucks and take a calcium test. He expected it would come back 0. Instead it came back 397.

* Since then, I have been on a journey to try to understand my situation/prognosis. I was placed on a statin, which almost immediately brought my lipid levels to the target range (<70 LDL), passed a stress test with an echo, and had a CT-angiogram. I've also made significant changes to my diet. Pretty much terrified of eating sugar, meat, dairy, processed/fried foods etc.

I have also consulted with several cardiologists and have gotten some mixed signals. The main cardiologist, who initially suggested the CAC test, is well-credentialed and experienced and has been adamant since the score came back that I shouldn't be worrying. He insists that I don't have a problem, only the potential for one, and that aggressive statin use and diet/exercise will prevent me from having a problem. He said that when the initial calcium score came back and said it even more adamantly this week when the CT-angiogram results came back. In fact, he told me that the angiogram showed only a minimal amount of plaque in my arteries, nothing that he would even consider out of the ordinary for someone my age. I was encouraged by his assessment but also confused, since none of the material I've read has suggested that a sky-high CAC score is as easily treatable as he says it is.

So I followed up with another very well-credentialed cardiologist yesterday. He reviewed all of the tests and materials. Overall, he agreed with the approach of aggressive statin use combined with diet/exercise and did talk about this as a condition that I can potentially live a long life with - provided that we arrest the plaque progression now. But he disagreed with the other cardiologist's assessment that the CT-angiogram only showed "minimal" plaque in my arteries. He said it looks to him like a significant amount, especially for someone my age. So while it's good news that the angiogram showed nothing even close to a blockage, it did show plaque that could at some point rupture and cause an event. He stressed that my day to day odds of this are "negligible," but I then asked him if he could put some numbers on what my risks are. He said that my case is unusual in that -- as I mentioned -- there's nothing in my lipid profile that would normally even prompt a calcium test and that without the CAC score, he would calculate my 10-year risk for an event at less than 1%. But with the score of 397 factored in, he says it takes my risk up to 8-9%. I asked what statin use could lower it too. He guessed that we could get it back closer to 3%, but then actually used his risk calculator and told me the number is 5%.

I think I am going to accept this as the last word on what I'm dealing with. I found this second cardiologist to be very knowledgeable and willing to explain and talk through everything. So I think that is my risk: There is a 1 in 20 chance that I will have a heart attack in the next 10 years. For someone without my CAC score, it would be more like 1 in 120. This seems much more realistic to me than the first cardiologist's adamant/data-free assertions that "we know how to treat this and there's nothing for you to be worrying about here." The reality is that I have about a 6-fold increased risk of a heart attack over someone my age with no CAC. Overall, of course, I have a 95% chance of no heart attack in the next 10 years too, and that's what the cardiologist I saw yesterday wanted to stress. So my challenge will now be try to think of it that way and move forward. But it will be tough for me. When I think of 1 in 20, it doesn't sound so remote. I imagine being one of 20 people lined up in front of an execution squad, where they get to pick one to kill. I'd be very uneasy that it would be me. A lot more uneasy than if I was 1 of 120 people. That's the kind of stuff going through my mind right now. The only thing I wish I had asked him before leaving was if that computed 5% risk (which is based on statin use) might be further reduced with diet/exercise. I imagine the answer is that it can't hurt, but obviously I'd love if there might be a quantifiable reduction. Mentally, I could probably process a 2-3% risk much better than a 5% risk.

So that's that. I'm 42. I have atherosclerosis. It's a mystery why I got it. And the plaque load I have is extensive for someone my age. I will follow the guidance om statins and hope that my current dedication to a healthy diet/exercise regimen will persist. But even with this, there's no getting around the plaque that I already have. It's there, it could rupture for reasons unknown at any minute, and the chance that it will in the next 10 years -- while low in the grand scheme of things -- is much higher for me than for most other 42 year olds. I've just known of too many "healthy" people in their 40s and early 50s having sudden heart attacks; it will be difficult for me to try to live my life with this knowledge. It's just the way I'm wired, I think.

Good luck to everyone here dealing with high CAC issues and to any others who might read this in the future.

All,

A quick update ... had QuestDiagnostics complete a Advanced Lipid panel/CardioIQ. Results were interesting (have posted on another of the high CAC threads, as well):
Total cholesterol - 94
HDL - 45
LDL-37
Triglycerides - 42
non HDL Cholesterol - 49
LDL particle - 883
LDL Small - 159
LDL Medium - 154
LDL Pattern - A
LDL Peak size - 218.7
HDL large - 6235
Apolipoprote in B - 43
Lipoprotein (a) - 28

Generally good numbers, yes?

To my untrained eye, yeah, they look generally good. The one question mark I'd have is the Lp(a) number, though. I'm assuming the unit of measurement is mg/dl here? On my test, the upper limit of the range is 30. If that's yours too, then I'd wonder if your number -- while still technically below 30 -- might be a bit of a red flag there. My understanding is that Lp(a) is one of the lipid levels that has been strongly linked with atherosclerotic development and (again, I think) is regarded as likely to be an inherited characteristic. Would be curious what a well-trained cardiologist would make of it given your high calcium score.

Lp(a) is shown in nmol/L and “optimum” is considered anything below 75 per the Quest summary report.

Steveny,

This whole report, to me, is another inconsistency - strange but true stuff!

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.