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Extremely high calcium score at 42 - is there any positive here??
Heart & Blood Health | Last Active: Jun 25 3:31pm | Replies (193)Comment receiving replies
So I haven't been here in a long time, but I started this thread originally in the summer of 22 when, at age 42, I learned that my calcium score was 397. I figured I'd update my situation for anyone curious/who stumbles on this at some point.
Basically: I had a very rough summer and fall in '22, losing myself in endless internet research, consultation with specialists, reading all of the compelling/contradictory diet advice from experts, having tests and scans done, etc. Eventually, I realized that the man who invented the calcium score, Dr. Arthur Agatston, is still in practice. So I became his patient.
This was almost exactly a year ago, and when I did, I calmed down fairly quickly. This was because I was very confident in him and he was up to speed on all of the latest research, testing and imaging and puts it to use in his practice. In short, he did advanced bloodwork that looked not just at my basic lipid profile, but at cholesterol particle size, "pre-pre-diabetes," and other things I have since learned a lot about. I also had a Cleerly scan done, and he works closely with them so he's as knowledgeable as anyone can be when it comes to interpreting results. What he found was encouraging: The Cleerly scan (as I think I mentioned in some earlier post here) showed 2/3 of my plaque was already calcified, and the other 1/3 was considered non-calcified -- and, crucially, that *none* was low-density/soft plaque, the least stable kind and the type most likely to cause a rupture and clot. And the bloodwork looked terrific. Low LDL particle count, very low small particle count, etc. And no diabetes, pre-diabetes or "pre-pre-diabetes." (I had taken a blood test in the fall of '22 that showed a high glucose number, but it proved to be a one-off and was probably the result of having eaten something too rich the night before). So Dr. A. felt that I had a fairly stable situation -- one that would only improve as I spent more time on the statin (I'd already gotten LDL to 51) , continued to improve diet and maintain weight loss (I've lost and kept 35 pounds off since this started and am at a weight I haven't seen in years), and took one more drug known to arrest plaque formation and stabilize existing plaque: Fenofibrate. This was December '22 and I left feeling very upbeat for the first time, and stayed that way for months to come, believing we actually did have a handle on this.
But then came the 6-month follow-up bloodowork. The basic lipid profile was still great -- LDL now under 50, HDL 85, low triglycerides, no elevated CRP or lp(a). But literally every metric on the particle test had moved in the wrong direction. Dr. A. admitted he was stumped. This wasn't supposed to happen given where my baseline had been and the treatment I was on. He raised a few possibilities but basically ended up encouraging me to focus on cutting out carbs as much as possible and to do a re-test and a new Cleerly scan in another 6 months.
Which brings me to this week. I had the Cleerly scan done again this week. And somehow, I have seen a 17% increase in my plaque volume. This was not supposed to happen. More worryingly, the balance between calcified and non-calcified has shifted; it is now close to 50/50. The idea was that with my treatment, I would dramatically slow the formation of any new plaques and that the existing plaques would simply calcify more and become more stable. Instead, I have developed new plaques and a significant new amount of non-calcified plaque. So the atherosclerotic process that we thought/hoped might have been more active in the past is still very active -- maybe even *more* active than a year ago. But how? Study after study after study says that I am doing and taking the right things to stabilize and improve this situation. The statin is supposed to shifty plaques from non-calcified to calcified. So is the fenofibrate. Taking all that weight off, especially around my belly, was supposed to be a huge boost. But even though my basic lipid profile looks better than ever -- LDL is now just 43 -- I am gaining plaque rapidly and it is spreading to new areas of my arterial tree.
I am supposed to speak with the Dr. soon -- can't come soon enough as far as I'm concerned. But I'm obviously quite discouraged as I write this. If you read this thread, you'll see that my extremely high initial CAC score was a mystery to just about everyone, and it's even more of a mystery how my plaque situation could be de-stabilizing and worsening under this kind of treatment and with these lifestyle changes.
I am hoping there is some root explanation that can be discovered here, but nothing in my conversations yet with the Dr. suggests he has many ideas beyond this approach. At worst, it was supposed to leave me in the same situation I was in a year ago and basically have no effect, positive or negative. But his experience and all available research, he said, suggested my situation would only improve. Instead, it's worsened. Which is very upsetting, obviously, and only amplified by the fact that it doesn't seem to make any sense.
Replies to "So I haven't been here in a long time, but I started this thread originally in..."
How did your diet change before your test with improved results vs. your tests with results that went in the wrong direction?
Hi @steveny
Sorry to hear about your challenges---Hopefully the new year will bring much better news. It sounds like you are doing everything possible. What did the Cleerly test show is your new CAC? You said it shifted to more of a 50/50. Seeing Dr. A--is he a proponent of repeating Calcium scores? I work in the medical field and yes within Radiology that offers many of these cardiac imaging studies. Interestingly my IVY League Interventional Cardiology group I go to...are not big fans of Calcium Scoring. He is also not rushing people off to a Cath Lab in his own words especially without symptoms. The best of luck to you and hope to hear positive updates from you. This forum is great to decompress and learn of other experiences. I had a CAC done 2 years ago with a score of 171---no symptoms, full workup CT, Nuclear etc. and am fortunate I am clear---but realize I have disease. Did your physician indicate if you have any blockages?
Sorry to hear. I have gone between keto and low-fat plant based diets and not much changes. I have a high lp(a) and trying to do what I can to lower everything. Your ldl is great so that is something to celebrate. I took a MTHFR test and have one issue with my MTHFR C677T gene. Recommendation is to do nothing. The answers are not all in, we can just do our best with the current knowledge in front of us. Nice to see what people are doing here in case we are missing any possible treatments, etc. Thank you for sharing.
I have read with great interest all your entries. Between Budoff and Agatston, you are in the best hands.
Vast majority of heart disease overlaps with metabolic disease/inflammatory markers. You do need to get to a root cause which will help with your natural and understandable anxiety.
Metabolic disease: it sounds like you have ruled out pre-diabetes with a kraft test (i know that is part of Agatston's protocol). Those are one time tests, but wondering if you have worn a CGM (like Freestyle) to see how your blood sugar spikes with food?
Other metabolic numbers:
What is your Uric Acid number?
Fasting insulin?
ALT/AST/GGT?
Have you had a DEXA VAT or an MRI to see if you have omental or visceral adipose tissue?
Inflammation: IL-6, IL-1 (beta) (look up all the peter libby and paul ridker videos online from Harvard). Inflammation is a huge driver of atherosclerosis.
Homocysteine (should be less than 6-7)? MPO, Fibrinogen (look up Ford Brewer's videos on Inflammation).
Sleep? Do you wear an oura ring, have you ruled out sleep apnea. Do you track HRV (heart rate variability)?
Ok, here's the big one: stress and hypercortisolemia-- HPA axis. Our social emotional ability to manage stress as well as mental health (anxiety/depression) have a huge impact on our management of cortisol which can cause athersclerosis. You will learn, if you wear a CGM (get without a prescription at diabetes warehouse in FL, Freestyle 3 + app is free or go to Levels) what spikes your glucose and it's not always food! It can be sleep, stress. Hanu is a new company that provides a wearable and gives you feedback on when to breath and destress.
Have you been tested for an autoimmune disease--sometimes the source of inflammation.
Malcolm Kendrick, a UK physician, takes a broader view on heart disease, and focuses more on inflammation and clotting. He wrote a book The clot thickens. Be warned that he rejects LDL as causative (and you have to at least hear him out as 50% of people die of heart attacks with well controlled LDL--it's called "residual risk"). On the opposite side of the fence is Peter Attia, another interesting resource with a podcast that helps too. I also just found Thomas Nero who is a cardiologist with a podcast called Future Pulse (for doctors), but all the interviews are very insightful. Nero interviews a sports cardiologist named Baggich who does a nice job characterizing the marathon runner with heart disease, and what he thinks is going on. Baggich was the head of sports cardiology at Harvard, so no slouch.
some will suggest cutting out all processed foods, seed oils and going lower carb-- I did so and got a huge spike in my LDL BUT interestingly, I had sequential CIMTs (the kind from Cardiorisk that measures intimal thickness and plaque, not flow) and over two years with that diet and soaring LDL (almost 200), my thickness went DOWN BY 13%. (yes I exercised too). So LDL isn't everything evidently. I took no statins. My CAC score is 0.
There is AN answer for why your results went in the wrong direction. Keep looking. Be curious. Don't let doctor's throw up their hands!
You are working so hard to advocate for your health and posting to help others.
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**That should say a 23% increase in my coronary plaque -- from 245 mm3 to 317 mm3. In the span of 16 months while taking a statin and fenofibrate, crushing LDL under 50, keeping all excess weight off, exercising regularly, and improving diet/incorporating Mediterranean principles.