High Coronary Calcium Score: How do others feel emotionally?

Posted by mcphee @mcphee, Dec 14, 2016

I have a calcium score of 1,950 which is extremely high which means I am at a very high risk for a cardiac event,heart attack,stroke or sudden death.

I take a statin and baby aspirin. I have never been sick, have excellent cholesterol, low blood pressure and I am not overweight. I have no other health problems and I have never been sick. But I feel like a walking time bomb which has caused me a lot of stress. I am 70 yrs old.

I wonder how others with this condition feel emotionally?

Interested in more discussions like this? Go to the Heart & Blood Health Support Group.

Btw a little more technicolor. I started my adventure at the medical center in Houston after having a respiratory viral infection in August of 2013. (In retrospect now reminds me of covid) and it was the worst virus of my life. I had no cormobid conditions and was only taking pravastatin for moderately high cholesterol total 224. On September 4th I went in to Walgreens and received my flu and shingles vaccinations. In two to three weeks I developed ataxia, unstable blood pressure and pulse, hypothermia, pseudohypoxia, CFS, hypothyroidism,spacisity,hyperflexia,tremor ...etc. Many more details to mention. I had consults with cardiology,neuroontology, neurology, movement disorders neurology..etc I underwent twelve weeks of physical therapy focused on learning to walk again. I finally determined what I needed to do to develop new neural pathways and added my therapy to the"standard of care". At the medical center I asked for a very experienced Internist to be assigned to coordinate my care with my specialist's and subspecialists. I was told by the largest medical complex in the world if I required that level of care I would have to go to either the Cleveland clinic or Mayo. The physicians in Houston apparently operate in silos and are not utilizing team medicine or coordinated care. It was at this moment I decided I would take on the complex technical role of coordining my care. I really didn't want the stress and learning required dealing with my own internal medical issues. My neurologist thought my condition most likely had a genetic makeup. I set off on educating myself in genetic engineering which I now feel confident in discussing the various detailed aspects of this developing subject. I took my genetic information discoveries to my various physicians and the overwhelming comments were this is not clinical but rather research and could tell by the light in a deer's eyes look I was not connecting.

I could go on and on about my medical center adventures. My current understanding of my condition (self diagnosed) is after having my URVI and stimulating my immune system with the vaccinations I developed Gillian's barre syndrome that consequently adversely effected my cerebral vermis and pungie cells as well as potential brainstem in involvement.

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@robertaholmes

Btw a little more technicolor. I started my adventure at the medical center in Houston after having a respiratory viral infection in August of 2013. (In retrospect now reminds me of covid) and it was the worst virus of my life. I had no cormobid conditions and was only taking pravastatin for moderately high cholesterol total 224. On September 4th I went in to Walgreens and received my flu and shingles vaccinations. In two to three weeks I developed ataxia, unstable blood pressure and pulse, hypothermia, pseudohypoxia, CFS, hypothyroidism,spacisity,hyperflexia,tremor ...etc. Many more details to mention. I had consults with cardiology,neuroontology, neurology, movement disorders neurology..etc I underwent twelve weeks of physical therapy focused on learning to walk again. I finally determined what I needed to do to develop new neural pathways and added my therapy to the"standard of care". At the medical center I asked for a very experienced Internist to be assigned to coordinate my care with my specialist's and subspecialists. I was told by the largest medical complex in the world if I required that level of care I would have to go to either the Cleveland clinic or Mayo. The physicians in Houston apparently operate in silos and are not utilizing team medicine or coordinated care. It was at this moment I decided I would take on the complex technical role of coordining my care. I really didn't want the stress and learning required dealing with my own internal medical issues. My neurologist thought my condition most likely had a genetic makeup. I set off on educating myself in genetic engineering which I now feel confident in discussing the various detailed aspects of this developing subject. I took my genetic information discoveries to my various physicians and the overwhelming comments were this is not clinical but rather research and could tell by the light in a deer's eyes look I was not connecting.

I could go on and on about my medical center adventures. My current understanding of my condition (self diagnosed) is after having my URVI and stimulating my immune system with the vaccinations I developed Gillian's barre syndrome that consequently adversely effected my cerebral vermis and pungie cells as well as potential brainstem in involvement.

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Guillian-Barre Syndrome can have difficult-to-manage long-term effects. You are right, coordination of care is crucial with multiple issues and the current division of medical care into silos. Louise Aronson, MD, has written a full-length book, Elderhood, that addressed this issue as she discusses ageism in our society. Coordinating our own care can become a full-time job, but being advocates for ourselves is necessary to solve many medical issues. I have personally learned a lot about atherosclerosis in managing my own. It feels empowering to know that I have done the best I can to modify what is in my control--diet,exercise, medication--to stay well. Stress management is something I'm still working on, with some success.

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@mcristodero

I am 45 with a very high calcium score (a brother that had a heart attack at 45 and ended up needing a heart transplant and a cousin that just had a heart attack at 48, I am in the same boat- i have been taking lipitor for 8 years and they doubled it and added zetia, but i want more answers. I had a stress test and echo and it was normal. I feel like everyone is just waiting for something to happen.
For the rest of the group, this test measures buildup of plaque in the arteries of the heart not free floating calcium in your blood. It is used as a way to predict an elevated risk of heart attack and stroke. An elevated score shows a risk for a major event such as heart attack.or stroke within the next 5-10 years

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Im in the same boat, just got my calcium score of 384 a few months ago. My cardio had me get a stress test done and it was excellent. He upped and my to 40 from 20 and told me to see him again in a year. Im relatively healthy but started working out more and eating a lot healthier. Im cutting out saturated and trans fats from my diet, and weight loss is a secondary thought to heart health. I wish you well.

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@achilles50

Im in the same boat, just got my calcium score of 384 a few months ago. My cardio had me get a stress test done and it was excellent. He upped and my to 40 from 20 and told me to see him again in a year. Im relatively healthy but started working out more and eating a lot healthier. Im cutting out saturated and trans fats from my diet, and weight loss is a secondary thought to heart health. I wish you well.

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@achilles50, congrats on taking charge and making healthy lifestyle choices for your heart's sake. I bet you're experiencing benefits beyond a healthy heart. Was it hard to make the changes? What benefits keep you on track?

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@colleenyoung

@achilles50, congrats on taking charge and making healthy lifestyle choices for your heart's sake. I bet you're experiencing benefits beyond a healthy heart. Was it hard to make the changes? What benefits keep you on track?

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Thanks! It wasn't very hard because to me I didn't really have a choice. I wish it didn't take a high score to finally get my health under control. Im 45 and weighed 237 2 months ago and now weigh 218. I feel a lot better and don't have any plans on slowing down on my healthy journey, I just fear that its too late and I waited too long. I feel like Im just waiting out a heart attack or a stroke with the score I have

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@achilles50

Thanks! It wasn't very hard because to me I didn't really have a choice. I wish it didn't take a high score to finally get my health under control. Im 45 and weighed 237 2 months ago and now weigh 218. I feel a lot better and don't have any plans on slowing down on my healthy journey, I just fear that its too late and I waited too long. I feel like Im just waiting out a heart attack or a stroke with the score I have

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fwiw - I'm the owner of an astronomic CAC score - over 2600, but, BUT I have a normal stress treadmill and the ultrasound of my carotids shows no atherosclerosis. Point being - I'm NOT in line for a stroke. And as I've mentioned before, I don't think that those of us with extremely high CAC scores have coronary atherosclerosis in proportion to that score. So, we really don't know our risk for heart attack without coronary angiography. I'd do that if I weren't hypersensitive to contrast material. So it goes.

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The CAC score is just one variable in a total picture of your total risk for CAD. With a calcium score gt 1k you tend to have a more stable plaque. This could lower your risk for stroke and certain coronary events. If you have unstable plaque and undergo angioplasty you may have a greater risk of a adverse event. The calcium score also breaks down where the calcium deposits are located which indicates where and how pathogenic the calcium may be. The bottom line is you must be cognizant of all the details that are included in cardiovascular disease. A few factors not mentioned is family history, genetics, lifestyle, lifetime blood pressure and any other cormobid conditions.

Roberta

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@bluesdoc

fwiw - I'm the owner of an astronomic CAC score - over 2600, but, BUT I have a normal stress treadmill and the ultrasound of my carotids shows no atherosclerosis. Point being - I'm NOT in line for a stroke. And as I've mentioned before, I don't think that those of us with extremely high CAC scores have coronary atherosclerosis in proportion to that score. So, we really don't know our risk for heart attack without coronary angiography. I'd do that if I weren't hypersensitive to contrast material. So it goes.

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Thanks for the input. Ive probably been over researching!

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@robertaholmes

The CAC score is just one variable in a total picture of your total risk for CAD. With a calcium score gt 1k you tend to have a more stable plaque. This could lower your risk for stroke and certain coronary events. If you have unstable plaque and undergo angioplasty you may have a greater risk of a adverse event. The calcium score also breaks down where the calcium deposits are located which indicates where and how pathogenic the calcium may be. The bottom line is you must be cognizant of all the details that are included in cardiovascular disease. A few factors not mentioned is family history, genetics, lifestyle, lifetime blood pressure and any other cormobid conditions.

Roberta

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If any one has been successful in lowering their calcium score I would be very interested in your treatment plan that accomplished this difficult task. I would also be interested in the genetic influence on arterial calcium buildup. Provide the genes and snps that are most closely linked.

If anyone who has a high score and had a stroke attributable to their score would provide information on outcome and how your stroke presented.

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@robertaholmes

This looks like a old discussion but will reply and add my details and comments. I am a 67 yo f and recently had a ct ld calcium scan after I noticed a cartoid artery blockage on ultrasound. My scan result was 1852. I then ordered a NMR to evaluate the makeup of my LDL and just like I suspected my small dense LDL was over a 1000. I had been taking 40 mg of pravastatin for over 20 years. This was shocking to me as my LDL Total was always in the 70's as was my HDL with my triglycerides almost always under 100. This was a enigma. I consulted with my cardiologist and endocrinologist about this and inquired as what would be a good treatment plan. The cardiologist told me that they don't normally test for particle size and do calcium scans as if they find something there is no FDA approved treatment. Here I had been going along fat dum and happy thinking all my cholesterol testing done over the past 20+ years indicated that I had 1/2 the risk of a Mace and now to find out it exceeded 10x+ the
risk. The medical "standard of care" is a broken model. If I had not taken it on my own to grab my own care by the horns I would not know I was a walking time bomb. Addionally it is a little known secret buried deep in the bowls of the medical literature that statins INCREASE arterial calcium.

I now fear this calcium is also effecting my renal system as my eGFR has been falling and Creatine has been increasing. I have now scheduled a complete parathyroid and renal ultrasound and laboratory work up. To see if my suspicions are again correct.

PLEASE DON'T LET YOUR CARE BE ON AUTOPILOT.

To reinforce the medical "standard of care" model is severely broken I argued in great detail why stopping the PSA test was such a hairbrained idea. They eventually brought it back and told the medical school profs a big I told you so. You have to realize the standard of care model is nothing more than a crude attempt at a cost versus benefit and utilizes a VERY BROAD basket of individuals with no understanding of the fact we're unique!

Sincerely

Roberta Holmes

I have tried all the vitamins with no results. You may need megadoses of V-K to see results but wasn't willing to go that far. Most likely will try next the biophosphates. BTW there are very few true experts on this phenomenon in the world.

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I feel your pain. Standard of care is broken, and I'm married to a gastroenterologist! Been told for years by doctors that I didn't have to worry about my cholesterol because I had high HDL and because it was the men in my family who dropped dead. Now I'm looking at a 256 CAC score at 64 years old. Thought I was in great shape, now feel like the "walking time bomb" because that score puts me in the 92 percentile which is considered high risk for heart attack. Saw a cardiologist who gave me the same standard of care BS so had my husband order all the tests that tell you what you need to know- LPa, APOB, fasting insulin, etc. and repeating lipids, etc. On a very low carb diet and doing my own research to stop the progression. Seeing one of the top researchers at UCLA tomorrow. Will report back to see what he has to say but statins do raise CAC scores so I'm not sold on taking them yet.

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