High calcium score: I'm in shock
Hi everyone... just wanted to share my last few days - I'm scared and lost and was just hoping to hear from some people who have been in my place. Long story short - I went in for a "routine" checkup at age 50 to make sure my heart was okay. I had a stress test two years ago that was fine. But I do have a family history, and somewhat high LDL and blood pressure so the doctor sent me for a cardiac calcium score. It came back at 407 at age 50!!! That's like the 98th percentile for my age, which is shocking. I do Crossfit and have done half marathons so it was totally unexpected. Now I'm going for another stress test in two weeks to make sure no blockages are over 70%, and I'm not sure of the steps after that.... I'm terrified of needing open heart surgery - I've gotten myself into a place of being okay with a stent if needed. I know it's better to know than not know, but I just feel like my life was suddenly ripped out from under me and to be honest I'm spinning right now... every waking second I feel like I'm going to drop over..
Interested in more discussions like this? Go to the Heart & Blood Health Support Group.
Personally, I REFUSE statins. They do nothing based on the studies which were hidden from the public. If a doctor is not working on your diet and supplements and only prescribing drugs, then he is a drug-pusher, not a doctor. Niacin is no good... too toxic. The first CAC I got was 3,600. Two years later I got it down to 2,200. I am getting another CAC this June and want to see it in the 1 thousands. D3 and K2 do not collide with any of his drugs.
I am so used to Facebook where the replies and comments go directly under the post... not scattered throughout 6 pages... Sorry about that. Do I have a CAC score? I have 3 CAC scores. First at only 3,660... Second at 2,817 and third at 2,242. I am getting my next one in June and will be in the 1 thousands somewhere. The only cardiologist I ever saw about 6 years only wanted to push statin drugs. No discussion about lifestyle or diet... only drugs. That is not a doctor, that is a drug-pusher. So got this under control on my own through my Naturopath doctor.
Have you visited the "Coronary Artery Calcification" group on Facebook. Already a member? Those in this thread should have a look.
jkluv7, my second visit to my cardiologist resulted in nothing. Stay on 40mg statin. My particle count came back from lab. I am Pattern B high risk. Too many small lipids. I am now on PCSK-9. My LDL-C was measured at 18, then 27. With the particle count now at hand, cardiologist now calculates my LCL at 110. That's why I am now on PCSK-9. Where can I find backup information, scholarly papers, studies showing D3 and K are safe to take with PCSK-9 and statins? I want to restart my supplements, about 20 in all.
Interested in your creative approach to self management of cardiac related lipids. My two siblings and I inherited "familial hyperlipoproteinia" - super high lipids unrelated to diet. I'm the only one not taking statins, which has led to rhabdomyolysis in one. (That one died suddenly a year ago of either a stroke or heart arrest - wife found him dead in the morning, No autopsy, as is common.).
The head lipidologist at John's Hopkins told me I MIGHT control my lipids by weight loss, exercise, eliminating refined carbs and minimal alcohol. Did all, and lipids normalized (my triglycerides had been over 800!). Note, this was long before carbs were (rightly) demonized.
25 years ago, to be exact, but since then the levels crept up along with my weight. My present cardiologist gave me an ultimatum about taking statins and within the six months I had, I lost significant weight until I was more slender than at 16. This was through the KETO diet, which as a carboholic was hell for me. Shocking too as I practically lived on fats, perhaps most saturated as cheese was the easiest way to avoid carbs and up the fats (I had scarcely ever consumed cheese in my life!). My doctor said it contradicted everything he'd learned in medical school.
This time I'm returning to all the same guidelines with exercise. being key. I've vastly increased gym aerobic exercise - also weight lifting. This marks a return as I'd slacked off a bit (relying on an easier stair-stepper at home)
To my astonishment this time, getting back to strenuous exercise somehow (this is amazing) corrected a serious arrhythmia that suddenly developed. I had constant tacchycardia. (over 100- 135 day and night, even in sleep and resting).
That scared the hell out of me as it suggested "sick sinus syndrome" for which there's no real cure and it significantly reduces lifespan. (Now my BPM has reverted to my former ~ 55-60 resting while 65-70 going about ordinary activities. Note that my aerobic - I do high interval training - rises to ~160 at highest, without major breathlessness at age 76!)
I'm not familiar with your methods and rationales but I HAVE learned that we have to learn our own bodies, monitoring ourselves based on what we learn are our triggers and what works. I HATE the gym exercises (though I always feel better afterwards) but it helps that I've learned how to set up my Ipad so I can watch videos doing the aerobic workouts. (I can no longer run outdoors - or even walk without support owing to a mobility impairment I developed, so I'm stuck with the gym).
My cardiologist told me that he'd allegedly learned that calcium testing revealed nothing useful (so he wouldn't order it). Reading CONNECT as relates to my conditions, I see this is far from a universal. belief. About to go out of town to cardiologists (second trip to a top arrhythmia specialist at the Cleveland Clinic who will give me tests – I'm glad as I believe my heart needs a thorough going over .)
I originally made the appointment to look into his attaching a "Watchman" for me for an unusual reason. I have spontaneous AFIB, and want very much to get off the oral anticoagulants, Why? Because my research (also common sense) revealed that they hasten the advent of blindness caused by wet macular degeneration (sadly, currently incurable but at an uncertain rate.). I'd have thought all retinologists would give a heads up about this to patients taking this medicine (after all both affect the same age group), but not so. I had to do considerable research and consults to find an interventional cardiologist willing to proceed with this "left atrial appendage" to block off that heart pocket where most clots form. That would allow me to discontinue the oral meds. (Yes, they DO hasten the movement toward blindness – plenty of reason to find an alternative approach to. protect against clots for those with AFIB. Just one more reason to do ones own research!)
Meanwhile, looking forward to a more enlightened approach to analyzing my heart issues – among them, the calcium score.
PS to explain for anyone interested, wet macular degeneration, causes blindness by the leakage of blood and toxic fluids from tiny (fragile) abnormal capillaries forming behind the retina. This causes irreparable scarring destroying central vision. Do you wonder that I wanted to get off the oral anticoagulants? Anything preventing clotting, I figured would be dangerous for this eye disease (and I was right, though it took a lot to prove it to the two specialty areas – cardiology and retinology.)
Supposed to addressed to sjy70 @sjy70, Jun 14, 2021
I am looking forward to reading about yourmr outcome. I had a very high cac score too
I almost wondered if we had the same cardiologist when read the 'large and fluffy' comment. I went to the doctor who created the calcium score and had a bunch of tests 15 years ago including the Berkeley cardio profile that is, alas no longer on the market.
I have high cholesterol and the genetic marker for heart disease and handful of family members who died of heart/stroke issues.
Yet my calcium score was 0 (has since climbed to 4 over 11 years) and other results showed me with optimal risk profile. Dr. Agosten went over the results with me and pointed to the lipid panel analysis and noted the high percentage of "big, fluffy, non-sticky" molecules that don't clump. And said that it explained the optimal risk profile that would seem to be at odds with high cholesterol and the genetic marker.
I now go to a former colleague of his and she told me that the research now shows that one can increase the percentage of larger molecules with exercise. [It was formerly thought that the molecule size was determined by the liver and pretty much a given, if I understood correctly.]
I've had high cholesterol for years and cannot tolerate statins so am grateful for any other risk reduction.
I also was of the impression, and could be wrong, that the calcium score was thought to be more of a strike risk early warning sign. One other test that I did, in addition to the usual suspects of stress test and echocardiogram, was the endopat. They were very reassuring for someone with the family history I have.
The cardiologist I saw at Cleveland Clinic believes the calcium score is useful as part of an overall cardio work-up for a new patient in determining the overall picture of the person's cardio health.
I should have asked the one I just saw there about it. Then again, there was so much to cover (the Watchman procedure, how to deal with a strange weeks-long attack of tachycardia and more), I don't think I could have fit in in... 🙁
(Especially largely to debunk my home cardiologist!)
But thank you for writing in (what I basically already knew).