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Losing the genetic lottery - Heart Disease

4,061 Views | 27 Replies | Last: 10 days ago by BCOBQ98
JB99
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This post is about heart disease. I've never considered myself at risk for heart disease. I'm 46, My blood pressure has always been normal 120/80, I don't have High Cholesterol (LDL is 124), no diabetes, I'm 5'll 225. My brother approached me over Christmas and said he rece y got something called a Calcium CT scan. He's 3 years older than I am. It measures calcium around your arteries and provides a score. Anything over 400 is considered high and points to plaque buildup and blockages. His came in over 500. He's in the 99th percentile for his age group.He then took one of those Ancestry DNA tests and ran the raw data through another tool and found he had 8 genetic markers for heart disease. So I'm spooked now. Last week I took the same Calcium CT test. My results came back today and my score is over 800. I don't know how many of you worry about these kinds of things, but I feel like I just got gut punched. I'm sure I'll be on some high dose statins shortly. Trying to lower my weight under 200. Not sure what else I can do at this point. Pretty bummed.
Ghost of Bisbee
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I's sorry to hear about your situation. I do think it's great that you're taking preventative measures now.

I'm not a vascular expert by any means, but I spent a lot of time talking about vascular disease with my doc at my last physical, specifically about calcium and plaque buildup around arteries. He and his wife wrote a book on the subject, and there were a couple takeaways:

- I'm not here to start a debate on plant based diets. But I did ask him if there's any truth to the notion that adopting a plant-based diet can reverse plaque buildup. He said it can.

- he said genetic predisposition impacts risk level for vascular disease much less than things like smoking or obesity. I guess that's common sense, but his point was our behaviors matter much more than our genetic makeup. I'm sure that's not a universally aligned belief, but I thought it was interesting

Sounds like you are on the right path. Kick ass with the hand you were dealt, you can do this
Apache
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Do some YouTube searches on Dr Peter Attia CT Scans. He too was genetically disposed to heart disease & had a higher than normal CT scan at a young age.

I listened to this a while back, so I don't remember all the details. The gist is that while you cannot lower your CT score (ie reduce the existing blockages) you can stop it from getting worse through diet & exercise.

It can be done!

I'm 50 and my CT score was 84. I started exercising & eating better the past few years, so I've no idea if my self improvement has done any good since all I have is one date point to go off.
wangus12
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Ghost of Bisbee said:

Sounds like you are on the right path. Kick ass with the hand you were dealt, you can do this
This! You can't do anything about genetics and its often one of the biggest factors in our health. Do everything that you can with diet and exercise. Listen to your Dr. I've seen incredibly healthy people come in to our clinic and have high scores, including professional level athletes. Like Apache said, you can't really lower that score, but we can do our best to stop it from getting worse.

If it is really bugging you, see if you can get a CT Angiogram done to see exactly where the plaque is and how thick it is. We've seen people with high scores that basically have a thin lining all throughout the arteries and then vice versa, people with low scores, but with all the plaque in one single spot about to cause a major issue.

Being proactive is the best course of action.
P.U.T.U
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If Attia says something, listen. He is constantly learning and goes deep into his research findings (he is a legit research doctor with a full team, not just someone claiming to be a doctor online).
lazuras_dc
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I genetically have an off the charts Lp(a). My ApoB and LDL are on the high normal range. No family hx of heart dz though.

I've tossed back and forth with doc about starting statin or not. Diet is decent, and exercise above average I would say.

But As Dr. Attia says, High counts of lipo-proteins (LDL or apoB) are necessary but not sufficient in itself to cause a cardiac event. meaning all that stuff alone is not going to cause atherosclerosis (you still need endothelial dysfunction and inflammation)

That being said, something else to look at is vascular inflammation markers: CRP , Homocysteine , LP PLA2

KidDoc
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Wowsa!

On the bright side you won the genetic lottery for a million other diseases. At least you don't have medium chain acetyl dehydrogenase deficiency for example!

Anyway if I had an 800 score and LDL >100 I would get on statin and Coq10 ASAP and get a stress test and, depending on that result, strongly consider getting a heart catheter with possible stent. As already mentioned it may be a nice diffuse calcification of the coronary arteries but it would scare me enough to do a fulll work up.
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JB99
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KidDoc said:

Wowsa!

On the bright side you won the genetic lottery for a million other diseases. At least you don't have medium chain acetyl dehydrogenase deficiency for example!

Anyway if I had an 800 score and LDL >100 I would get on statin and Coq10 ASAP and get a stress test and, depending on that result, strongly consider getting a heart catheter with possible stent. As already mentioned it may be a nice diffuse calcification of the coronary arteries but it would scare me enough to do a fulll work up.


I have a followup with my doctor next week. Going to be asked to be out on Crestor 20mg to get my LDL below 50. Agree with everything else you said. My brother is in the same boat and he said his doctor is treating it like he's already had an event and managing it more aggressively. I hope I don't need a Stent.
bam02
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Whoah. I'm there with you but I do have a bad history of premature heart disease on my father side. Both his mother and father died early of heart attacks. He started to have heart attacks in his 40s and ultimately died of a stroke at 63. He was always very lean and fit, but he did suffer from horrible rheumatoid arthritis.

I am his youngest son, so I was only a teenager when he started having heart attacks around age 40. He was always lean and fit.

I started on a statin in my 20s. I have always been exceptionally fit and started really looking at advanced lipid panels in my 20s. My Lp(a) has always been over 100. My doctor has had me on max dose (2000mg) of niacin. It is helped a little, but I'm still close to 100. My family Dr seems to think this is pointless. Not sure what direction to go.
BCOBQ98
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My cardiologist retired and the new cardiologist I got was shocked at my cholesterol levels. Put me on a statin asap which has brought my numbers into the good range. She also ordered a bunch of tests such as ultrasound and the calcium one you are talking about. All tests came back fine and the calcium test came back with a score of zero. Not sure I believe that.


lazuras_dc
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Mine is 300+
Unfortunately at this time no really good/affordable ways to reduce lp(a) #s. PCSK9 inhibitors and apheresis and experimentals like Pelacarsen and siRNA drugs.

I saw a study that said Niacin had a poss 20% reduction in lp(a). But did not reduce death or adverse CV event.

But again what that tells me is Lp(a) is only a particle (in addition to apoB) that is necessary to cause CVD. Many other factors at play... Just having high #s doesn't necessarily mean you'll have it or have an adverse event.
Snake Jazz
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My father died in his mid-50's of heart failure, and his father and grandfather both had heart issues although they lived into their 70's.

So, I had pretty much felt doomed to die of heart failure some day. I'm in my late 40's and have started to be more proactive about this in recent years. This past summer I had the treadmill stress test and was shocked that my results were surprisingly good...my doctor's words were that my heart passed "with flying colors."

I strongly suspect that the heart disease in my family is likely caused by sleep apnea. My father was a horrible snorer, and died before diagnosing sleep apnea became as prevalent as it is today. I know my grandfather snored heavily, too. At my wife's urging (who was sick of my snoring), I had a sleep test probably five or six years ago and they found I had severe sleep apnea. I've been using the CPAP since then and it is amazing how different I feel. Truly, probably saved my life. I had been drinking coffee or energy drinks almost all day to get through because I was basically waking up every minute...never got into a sound sleep because I was choking. The strain that that put on my heart substantially raised my risk of heart attack or stroke. I'll never know for sure, but I suspect that is what killed my father.

I'm much more optimistic about my heart health than I was a few years ago, but I think everybody over 40 (especially males) should have calcium and/or stress tests every few years.
lazuras_dc
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Not to be negative in your case but...According to Dr. Attia: A CAC score above zero tells you that there's been a bad enough damage to be picked up. However, a lot can go on in the disease process leading up to that point that goes unnoticed by a CAC scan which may still show a score of 0.
lazuras_dc
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Yes! i feel like OSA has been such an under-rated factor that plays into the detriment of our health until recent years. Glad your #s and scores are looking good !
bam02
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Can you buy a CPAP machine without having had a sleep study? Is that a bad idea? I never thought I had any problems with this until recently, but my wife ordered me that tape put over your mouth to sleep at night. No way in hell I'm gonna use it. Maybe she can use it while she's awake.
Snake Jazz
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bam02 said:

Can you buy a CPAP machine without having had a sleep study? Is that a bad idea? I never thought I had any problems with this until recently, but my wife ordered me that tape put over your mouth to sleep at night. No way in hell I'm gonna use it. Maybe she can use it while she's awake.
I'm not sure if you can buy one without going to a doctor, but I would go see a doctor. There are different kinds of masks, and they'll recommend one based on your results. Mine only goes over my nose, but some people require one that goes over the whole face. I see a doctor once a year to go over my results, and he gives me a prescription that covers new mask, tubes, etc. and makes it much cheaper than buying it without. The company you buy the machine from keeps a record of your sleep and makes sure it is working effectively.

If you suspect you have sleep apena (i.e. you snore regularly), ask your general doctor about getting it done. I spent one night in the hospital and slept with all of their equipment connected to me and they knew right away I had major problems. I can not tell you how much it has changed my health and quality of life. I had no idea I was that sleep deprived and how it was affecting my health.
lazuras_dc
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You can surely buy one but without knowing where to titrate it you could be either ineffectively using it or way overkill and cause problems. There are plenty of things you'll need to know from sanitizing to different set ups with hoses/masks, etc. I'd go get a sleep study and work with a sleep physican, as crappy as that may be (the sleep study).
bam02
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OK I just made an appointment with my PCP to talk to him about it. I was surprised at how soon I was able to get in.
A is A
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Sorry to hear all this OP.

For all other reading. February is Heart Month. I recognize it for my littles one with PAIVS. But beyond CHD there are so many other heart conditions that are preventative or that can be maintained by checkups.

Your heart is special. Get check ups.
DeepintheHeart06
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I think OP has the right approach.

An elevated calcium score isn't a death sentence. But especially in a situation like this it's very helpful information. If your score had been 0 then essentially you do nothing different other than the normal diet/exercise/preventative measures. Knowing this score changes that approach to a more aggressive strategy. I agree with starting a statin and Crestor would be my preferred. That is all in addition to a commitment on the diet and exercise front. I also recommend more aggressive screening - which includes a stress test and carotid ultrasound.

Of note, cardiac CTA are often not very helpful with severely elevated calcium scores. The calcium creates an artifact on CT that can often prevent accurate assessment of the coronaries.
JB99
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DeepintheHeart06 said:

I think OP has the right approach.

An elevated calcium score isn't a death sentence. But especially in a situation like this it's very helpful information. If your score had been 0 then essentially you do nothing different other than the normal diet/exercise/preventative measures. Knowing this score changes that approach to a more aggressive strategy. I agree with starting a statin and Crestor would be my preferred. That is all in addition to a commitment on the diet and exercise front. I also recommend more aggressive screening - which includes a stress test and carotid ultrasound.

Of note, cardiac CTA are often not very helpful with severely elevated calcium scores. The calcium creates an artifact on CT that can often prevent accurate assessment of the coronaries.


Thank you. I was thinking I needed a CCTA. Wasn't aware of the limitation.
Bonfire97
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I know this is an old thread. However, I am in a similar boat as OP. 49 and just got a calcium score of 1005. JB99, would you have any interest in discussing further or comparing notes? Thanks in advance!
CyAg86
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I recently turned 60 and did the bloodwork, stress test, etc. I consider myself to be in pretty good shape for my age. Cholesterol a bit high, upped the dosage on my statin. Stress test was fine, no issues. Calcium score was 600, much higher than expected. Years ago I had a calcium score of 50.
MAROON
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I have a calcium score over 1000. I've never had high cholesterol but went on a statin (20mg) after the calcium score. Current cholesterol is 124 with LDL of like 48 and HDL of the same. I do have high Lipoprotein (a).

I work out or play golf four to five days a week. Workout is 30 minutes on elliptical to get heart rate up in the 130's and weights. I've lost about 25-25 lbs over the past year.

In July I had my annual physical along with a nuclear stress test. doc said I "failed" my stress test - which was interesting because I felt like it was super easy and had no issues. He immediately doubled my statin to 40 mg and also has me taking 81mg aspirin daily.

anyway, went to cardiologist who did a cardiac catherization because we assumed blockage and I would hopefully just need a stent. Well during the test, he could not find any serious blockage in any of the main arteries to the heart. Said I had one spot that might be 30% but that was all. I watched it all on screen and he showed me every artery. I go back next week to have a blood draw to see if the doubling of the statin has lowered my cholesterol even further. Will do another stress test next year, and try to do a PET CT scan next year (insurance refused to pay for PET scan after the cardiac catherization).
Bonfire97
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Maroon, sounds like we have similar situations. I did pass my nuclear stress test. Doc wanted to do a catheterization but said it would be for information only to see how much blockage I had. He said that since I passed the nuclear stress test, he knows the blockage is not over 70%. He said he would not stent if the blockage was under 70%. So, I declined the catheterization since I didn't feel like it was going to change the outcome (i.e. me having to start a statin). My LDL was 126 (was 160 a couple of years ago) and my "Lipoprotein a" was 49 (low). I'm 49, not overweight, and thought I was in good health.

Almost all of my calcium is in the LAD artery (or widow maker artery). He put me on Rosuvastatin 10mg and wants to see me back in 3mo. I am changing my diet, getting of all alcohol, and jogging/walking 20min/day.

I am glad to hear you didn't have much going on in terms of actual blockages. I probably should have done the catheterization too in order to find out....
94chem
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bam02 said:

Can you buy a CPAP machine without having had a sleep study? Is that a bad idea? I never thought I had any problems with this until recently, but my wife ordered me that tape put over your mouth to sleep at night. No way in hell I'm gonna use it. Maybe she can use it while she's awake.
Bam indeed.
94chem,
That, sir, was the greatest post in the history of TexAgs. I salute you. -- Dough
94chem
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Fatty15
94chem,
That, sir, was the greatest post in the history of TexAgs. I salute you. -- Dough
BCOBQ98
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3 years ago I was tested and had a calcium score of zero for all.

Just got retested and all are still zero except LAD which is 7.6. My cardiologist is freaking out as this is 50th percentile for age and gender. I'm already on 10mg statin and she is talking about upping it more.
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