High calcium score: I'm in shock

Posted by sjy70 @sjy70, Jun 14, 2021

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.

@helpfull

jkluv7, thanks so much for reply. Exactly what you said in your post is where I am going - sooner than later. Last week was second visit with "renown" cardiologist and I did press for his thoughts on supplements, especially D3 K2 MK4 MK7 (and maybe Niacin) , I was fearing doing more harm than good, but cardiologist did not say "no." He would rather me take one step at a time, first statin up to 40mg, second is PCSK-9, third would be Zetia, then there is no more left - TRUE? While measuring LP(a) and particle sizes. What I really want is for cardiologist to go in invasively, stent or bypass as needed, taking the 1 in 1,000 risk I through a clot or worse, and do everything you and others have said here.

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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.

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@helpfull

jkluv7, I've been feeding this thread with replies to everyone. In summary, when got CAC=1,328 five months ago, did echo stress, did carotid intima thickness test, went to statin 40 mg, had lipid particles and LP(a) tested, going on PCSK-9 this week, waiting for cardiologist to give me Zetia, considering 20 or so supplements, I DID do them before, ask me for list, and considering K2. Since got CAC score, there's been a lot of anxiety and stress, it's life changing in that the end is nearer that I thought, but my mother made it to 93 years old, and my brother is still alive with three stents. I want an invasive angiogram to head off waiting for a bad event, wherein they will do an invasive angiogram. Go figure. Thanks for reply. Do you have a CAC score?

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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.

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Have you visited the "Coronary Artery Calcification" group on Facebook. Already a member? Those in this thread should have a look.

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@helpfull

jkluv7, thanks so much for reply. Exactly what you said in your post is where I am going - sooner than later. Last week was second visit with "renown" cardiologist and I did press for his thoughts on supplements, especially D3 K2 MK4 MK7 (and maybe Niacin) , I was fearing doing more harm than good, but cardiologist did not say "no." He would rather me take one step at a time, first statin up to 40mg, second is PCSK-9, third would be Zetia, then there is no more left - TRUE? While measuring LP(a) and particle sizes. What I really want is for cardiologist to go in invasively, stent or bypass as needed, taking the 1 in 1,000 risk I through a clot or worse, and do everything you and others have said here.

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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.

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@kefnb

For what it’s worth, here’s my experience.
I can’t recall exact numbers, but my total cholesterol was (for multiple tests) over 300. My LDL very high, but recently had a VLD included in my labs and that was very low. HDL was about 60 (I’m female).
Triglycerides also very low. Doctors wanted to put statins but I have refused for two reasons:
1.). I have chronic fatigue syndrome and fatigue being one of the SE I, couldnt tolerate it
2.). I read decades ago that the size rather than the amount of cholesterol might be a better indicator of risk. When my doctor agreed to test for that (I had to pay out of pocket) my cholesterol molecules were “large and fluffy)
I had osteopenia even though I drank a gallon of milk a week and took a D3 supplement. So I started researching and came across the Weston Price Book and it made a lot of sense to me. I increased vitamin K foods to help get calcium in my bones and ate mostly grass-fed and finished beef. We raised our onn chickens and I switched from cheddar cheese to Guda and Brie-all towards that effort. My score when I divide my Triglycerides/HDL is less than 1 or 1.
I don’t exercise, but I try to be busy, since my chronic fatigue improved.
I also take Thorne Brand D3/K2 drops daily as an effort to get the calcium out of my arteries and into my bones. I eat Kerry Gold Butter and am quite liberal with it. I sauté veggies in that or lard from grass fed and finished beef.
I know this all goes against the prevailing opinions, but it seems to be working for me

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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).

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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

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@anniehall56

I have a 255 CAC score - just found out six months ago after some blood tests that showed high glucose, high cholesterol/LDL, and a terrible family history of heart disease- and also passed a stress test and told I had no blockages. I decided I should have a CT angiogram (non-invasive X-Ray of the arteries) to make sure which came back a couple of days ago that I have an approximate 50 percent blockage in my LAD. The cardiologist also ran a blood flow test (FFRct) and it showed restricted blood flow in that area. I will be seeing the cardiologist at UCLA tomorrow to go over what this all means but I'm glad I went beyond my standard of care cardiologist who told me I was fine after the stress test and instead, saw a research cardiologist who specialized in CAC.

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I am looking forward to reading about yourmr outcome. I had a very high cac score too

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@kefnb

For what it’s worth, here’s my experience.
I can’t recall exact numbers, but my total cholesterol was (for multiple tests) over 300. My LDL very high, but recently had a VLD included in my labs and that was very low. HDL was about 60 (I’m female).
Triglycerides also very low. Doctors wanted to put statins but I have refused for two reasons:
1.). I have chronic fatigue syndrome and fatigue being one of the SE I, couldnt tolerate it
2.). I read decades ago that the size rather than the amount of cholesterol might be a better indicator of risk. When my doctor agreed to test for that (I had to pay out of pocket) my cholesterol molecules were “large and fluffy)
I had osteopenia even though I drank a gallon of milk a week and took a D3 supplement. So I started researching and came across the Weston Price Book and it made a lot of sense to me. I increased vitamin K foods to help get calcium in my bones and ate mostly grass-fed and finished beef. We raised our onn chickens and I switched from cheddar cheese to Guda and Brie-all towards that effort. My score when I divide my Triglycerides/HDL is less than 1 or 1.
I don’t exercise, but I try to be busy, since my chronic fatigue improved.
I also take Thorne Brand D3/K2 drops daily as an effort to get the calcium out of my arteries and into my bones. I eat Kerry Gold Butter and am quite liberal with it. I sauté veggies in that or lard from grass fed and finished beef.
I know this all goes against the prevailing opinions, but it seems to be working for me

Jump to this post

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.

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@realitytest

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

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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.

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@callalloo

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.

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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).

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