Connect
Extremely high calcium score at 42 - is there any positive here??
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.
Like
Helpful
HugInterested in more discussions like this? Go to the Heart & Blood Health Support Group.
Connect
Yes, I do have a high calcium score.
My cardiologist advises that the CAC test is just a one time only thing. It's a diagnostic that indicates the need for statins, other meds and lifestyle changes. Make the changes and you can substantially reduce the chances of a heart attack.
As for metrics, ldl levels under 70 is what is recommended for patients with high CAC scores. I just had my yearly blood test and my ldl is 58, unchanged from last year, so that's good.
For added peace of mind, I try to minimize the amount of times I google topics like "high CAC scores". It'll stress you out and that's definitely bad for your heart.
-
Like -
Helpful -
Hug
3 ReactionsThis situation is getting more upsetting and alarming for me. It has now been two weeks since my cardiologist gave me the 397 calcium score and put me on a statin (20 mg crestor).
As I’ve said previously, I am extremely alarmed at just how high this number is. *Any* calcium at my age (42) is unusual; this level, from what I can tell, is virtually unheard of. The second cardio I saw told me he can’t recall ever seeing it this high in someone as young as me.
That said, both cardios agreed with the same basic approach of statin use and improved diet. And I’ve spent the last two weeks trying to put that into action and calm myself by telling myself I was taking smart steps that would benefit my prognosis.
The problem now is that I am clearly not tolerating the statin. I know this because of exercise. I had already been running before the calcium test - 4/5x per week, a 3.1 mile loop. I had no trouble doing it at all, actually looked forward to the jogs for stress relief etc. But literally the day after taking my first statin dose, this run — previously an utterly routine thing — was transformed into an epic struggle. My time was 5 minutes slower and every stride felt like I was fighting my body. It wasn’t muscle pain; more like I just had extremely tired/heavy muscles everywhere in my body. I run much slower and yet amd sweating 3x as much as before. When I get back I am utterly drenched and drained. It’s a mostly flat route but there is a quick uphill, which I had previously zipped up. Now I can barely get to the top, and I’m basically waking to do it. I hoped initially I’d get used to the statin and this would subside. It hasn’t. Today was the worst day yet. My strides got shorter and shorter as I fought my body to keep moving. Finally I just had to stop. I can’t remember the last time I actually needed to stop running like that.
I am writing this hours later and my body just feels tired. I’m typing this on my phone and both arms feel heavy with fatigue. They basically feel like they would if I’d done intense weight and resistance training — but I didn’t do anything like that. I just tried to jog. Same thing with the rest of my body. My neck and shoulders feel like they would if I’d been lifting and carrying heavy equipment all day, but I’ve done nothing like that.
I am deeply concerned — terrified, to be honest — that not only is my calcium score so outrageously high, but my body seems to be rejecting the treatment.
For what it’s worth, I suspect this may be thyroid related. My thyroid tests are normal but in my early 30s I began experiencing hypo-like symptoms — stubborn weight gain, muscle turning to fat, loss of hair on legs, fatigue, paresthesia etc. Most doctors shrugged it off because the testing was normal, but one specialist suggested what he called “thyroid resistance.” Basically that I test normally but am clinically hypo. This would be a very rare condition. He treated me with ultra-high-dose T3 (cytomel) and for 6 months it worked - weight down, energy up and —- notably now — my total and LDL cholesterol both dropped dramatically. Like to the level we’re aiming to get at with the statin. But then the T3 just stopped working and I returned to baseline. The endo was baffled but suspected that receptors had down-regulated. Since then I’ve tried T3 on and off, and at best I can get a response for a few months before it turns off again, and I need to then stay off it at least 2-3 months to get it going again.
What does all of this have to do with my calcium score? I see that hypothyroidism is linked strongly with coronary plaque. And that it apparently is much more likely to cause bad reactions to when people take statins.
So that’s where my head is now. I think I am in a very rare situation medically. For complicated reasons, I got some form of “thyroid resistance” in my early 30s and I suspect it set my body to start accumulating plaque. Perhaps the T3 temporarily stopped the process while it worked, but the T3 unfortunately only works sporadically at best. And now this thyroid resistance is causing my body to react powerfully and negatively to the statin.
I’ve run this by the cardiologist. Obviously it’s a set of factors he’s never heard of before so I don’t think I’m going to get very far with him. But I can honestly say as I type this that I’ve never been more frightened in my life. I believe my body is fundamentally broken in a way that has caused dramatic early coronary calcification and that will prevent “normal” treatments from working. I believe a heart attack is coming any minute. I will be one of the stats of people who die of this in their 40s. My life is near its end. I can’t believe how fast it all went and that this is where it’s all ended up.
steveny,
The Brits would consider our common circumstances ... and stand tall, then say, "Right."
Meaning ... we are where we are. Your experience with statins may be an issue - but, you may be a bit psychosomatic. You may also need to weigh your desire to run several times a week against what you are experiencing. A different circumstance - when I had to get a hip replaced at age 50, I stopped running, stopped playing tennis, etc. Did not have to, but the wear on the new joint would gave caused early wear. A trade off.
I suspect your cardiologist is following a standards of care approach ... they are aware of the data and understand, given you have no symptoms, that you are only moderately at risk.
So, parsing this - your next step is a stress test? Better with echo? Maybe change statins? (I have had no effects that I can feel from atorvastatin) There are several options ... and several approaches to dosing.
-
Like -
Helpful -
Hug
1 ReactionI'm going to make this point one more time then drop it. My former cardiologist is Dr. Agotsen, aka the creator of the Agotsten score aka the CAC. My current cardiologist worked directly with him for five years before the commute became too tiresome.
Both of them have seen higher CAC scores and did not consider them any kind of death sentence. Data is data but a data point is just one point. It's the overall collection of data points, and the importance of connecting the dots intelligently to make a meaningful pattern, where the art and science of medicine come into play.
The answer to the original question is: Yes. Value the CAC as an early warning signal and take whatever steps seem intelligent to mitigate chances of it increasing. I mean, what else can any of us do with any possible health glitch?
I once made a comment to Dr. A. about all of the people who have bypass and other surgeries, suggesting that medicine is lacking. His rejoinder was, logically defensible, 'we call that confirmation of medical advances.' Then cited a client who is still working and playing tennis, in his mid-90s, despite a first-ever heart attack in his 30s.
If you need help with taking positive steps without panicking, get it. Overthinking is not an asset in situations where it becomes an additional source of stress. Which, as we know, has a systemic effect on the body.
-
Like -
Helpful -
Hug
3 ReactionsWell said.
-
Like -
Helpful -
Hug
2 ReactionsThank you for the level-headed response. The next step for me is a stress test/echo this coming Wednesday. The cardiologist is also going to do a “point of care” lipid test that day; he says it’s nearly as good as normal blood testing and will give us an indication if the statin is in fact lowering the LDL.
I know I am in a worked up state and it could influence my perception of things, but I am confident that my body is truly having a negative reaction to the statin. It’s tough to put into words, but I’ve been a runner for most of my adult life. I’ve had days when I’ve felt great and days when it’s been a slog, but I have *never* experienced the kind of struggle I’ve faced every time I’ve tried to run since starting this statin. And I wasn’t even thinking that might be a side effect; the doctor prescribed it and I took it on a Thursday, I went out for my Friday run with no knowledge of reported statin side effects and found myself struggling mightily to keep moving. I’ve realized over two weeks that I’m fighting tired muscles, everywhere in my body. I feel this most acutely when trying to exercise, but even just sitting around my body feels like it would after a day of intense physical labor. I just want to sit down, slouch, and lean my body against things.
Long way of saying what I’m afraid this is telling me is that the root of my problem is deeper than just the mildly elevated cholesterol I have and that my reaction to the statin is an indication of this. And that either (a) the statin won’t work to bring down cholesterol or (b) even if it does, it won’t actually do anything to help my plaque situation. Something is terribly wrong in my body to have accumulated so much so early in life.
Greatly appreciate the perspective, especially given your first hand experience with Agatston.
Reading all of the lit that’s available on line on it is a deadening experience. Just one medical journal after another saying that the CAC score is:
* Peerlessly accurate and virtually never prone to error
* By far the strongest available predictor of future cardiac events - so strong that it will single handedly increase someone with an otherwise normal blood panel’s risk by a factor of 5x or 10x or even more depending on how high the score is
To read all of that and know that I have a 397 at 42 is just something I’m really struggling with. And to now be feeling absolutely wiped out by the statin that is supposed to help me here is putting my mind in darker places still.
It's important to realize that the predictability of a cardiac event with a high CAC score is...only if you do nothing. No lifestyle changes, no meds.
Make the all changes, take the meds and the chances of a heart attack can go way down.
-
Like -
Helpful -
Hug
3 ReactionsFor what it's worth, I had a terrible problem with statins. My current cardiologist and I tried every one on the Markey and I has stunningly-painful leg cramps within a week of starting any in them, including micro doses. So I wouldn't be surprised if statins are affecting muscles and tendons. There are a few newer non-statin, anti-cholesterol drugs on the market that, purportedly, don't take a toll on the musculoskeletal system. And there are over-the-counter phytosterols that a lot of people have good experience with so there are statin alternatives. And diet can affect the kind and molecule-size of cholesterol as well. Lastly, I'm a firm believer in getting second, or even third for something life-saving, opinions. But keep focused on what you can do next so that 'paralysis by analysis' doesn't overwhelm.