High CAC Score and Current Status

Hey Whineboy Thanks Thats great news. Truth is I like the higher fat diet but was worried I was doing the wrong thing. I love cheese and milk with cereal. When I got the bad news my thoughts were " Damn there goes the butter". I will be discussing everything with the cardiologist on Monday.

Oct 22 - Status.

With the assistance of my primary care physician, who recognized my agitation and anxiety at the lack of action and to whom I had presented what I think was a convincing case to investigate further (even though my cardiologist did not think it was warranted), worked to get referrals for tests based on the CAC screening and a history of high blood pressure, cholesterol and poor LDL/triglyceride findings. I now have data from advanced lipids panel (Cardio IQ), Arterial Duplex Doppler (Lower Extremities), Carotid Doppler Ultrasound, Aorta Ultrasound, Transthoracic Echocardiogram, Stress Test with Echocardiogram, a second CAC, and a CT Angiogram. My intent was to obtain data from every related, non-invasive test that could provide information related to my high CAC score (1352 in 2019).

The reason I went through my PCP for this was that the cardiologist I consulted with initially sent me for a stress test (without echo) and upon finding it rather normal said to come back in 3-5 years. After waiting three years, the cardiologist about six months ago said nothing else was needed at this time - wait for another stress test in a year or two.

After obtaining the data, I returned to my cardiologist. His notes summarize our discussion - "Patient returns after he had a recent plethora of noninvasive tests done by his PCP. He tells me he feels fine … From a physical standpoint he feels fine. His test showed no ischemia, but for unknown reasons a coronary CTA was done. This demonstrated several calcified lesions which could be "greater than 50%". However, he remains asymptomatic. He tells me he could have walked longer on the stress test. His stress echo showed no wall motion abnormalities or EKG changes. Returns today to discuss the findings and whether not he should have catheterization. He tells me his blood pressure is normally in the 120s. He is not having any arrhythmias.” (ed - It is actually 115-120/68-75 in most cases). We discussed how CTA is unable to completely (effectively) determine blockages with high calcium present due to calcium induced blooming - this is known, but does not, per my reading, completely invalidate the utility of CTA. The cardiologist who initially read the CTA noted blockages that “could be >50%,” and “may be >50%” in the LAD.

My cardiologist further noted in the area related to the original and subsequent increase of CAC score from 1352 to 2388 - “We discussed his coronary CTA at length. He tells me he wanted "all the data" and preferred to have a coronary CTA. As I have explained, and a heavily calcified coronary tree, a coronary CTA is not accurate due to the artifact created by the calcium. The only accurate way to discern the severity of his stenoses would be catheterization. However, his stress test is reassuring with good functional capacity with no EKG changes and no wall motion abnormalities. He does not have any valvular disease. As I have explained, coronary calcification is a marker for risk and he is treating all of his risk factors aggressively. His lipids are well controlled and his blood pressure is normally well controlled. He admits he is apprehensive today. After lengthy discussion, we have agreed to continue clinical follow-up. As I have told him if he develops any fatigue, dyspnea, chest pain, etc. his next step would be cardiac catheterization. He should not have a coronary CTA in the future be calcification precludes the accurate assessment of stenosis due to artifact. I will see him again in 6 months.”

So, armed with more information, some of it not so good but predictable - CAC increase from 1352 to 2388 in three years, and confirmation of several calcium build ups in various parts of my heart, I am faced with whether or not to be catheterized. When I asked the cardiologist, his response was solid - not required unless you are experiencing some physical trait associated - shortness of breath or pain.

One side comment - the cardiologist was obviously miffed I had undertaken the testing regime - which is used by so many in this circumstance - when he had not recommended any further action or investigation. This was off-putting and sounded petulant. Was I off base in this regard?

The tone in his notes is clearly one of irritation. Your frustration and pursuit of further testing is very understandable to me, though, and I assume to others here. We are told we have very high calcium scores and upon researching this we are confronted with an avalanche of alarming literature about event and mortality statistics. But what we mainly get from cardiologists is a statin prescription and advice to modify lifestyle. Which is all well and good, but of course, we can also read in the literature that, while statins do reduce risk, they far from eliminate it. The same with improved diet and exercise. Anecdotally and statistically, we are all well aware of how many people do all the "right" things and have an event anyway.

So I share your resolve to investigate further than most cardiologists will because I want to find more ways to reduce risk -- or to understand if there might be some aspect to my condition that actually mitigates or off-sets the high risk posed by my calcium score. I've seen four cardiologists since I got my score, though, and none have shared this sense of urgency.

In term of your cardiologist's specific notes, I do think he may have a point on the accuracy issues with CTA when exceptionally high calcium levels are seen. But I do wonder about the make-up of your plaque and if a Cleerly analysis of the CTA might be useful? We're all aware I think of the general consensus that statins can increase calcium scores by hastening the calcification process -- which is actually a positive, because hard, calcified plaque is much more stable. In that sense, the increase in your score might reflect more stable plaque, it would seem. Cleerly will give you a report that quantifies the amount off different plaque types that you have -- low density non-calcified (most dangerous), non-calcified, and calcified (most stable). I don't know if Cleerly's accuracy would also be affected by the overall calcium level you have, but maybe it would be helpful to know what this breakdown would be for you. If you mainly have calcified plaque, that could -- I think -- potentially represent encouraging news despite the increased calcium score.

steveny,

I think we're at the core of cardiology wrt calcium build up ... no pun intended.

The standards of care process - high CAC, change in meds, change in lifestyle if needed, followed by stress test that if looks ok, is followed by ... another stress test later ... followed by another stress test - unless an event occurs or pain, then cath with stent assuming one is still alive and the stenosis is stentable.

Yeah, the potential for calcification of plaque could be positive ... but, so much uncertainty remains without confirmation via cath.

Ya know, my sense is that a CTA could be useful, even with calcification obstructing in that a cardiologist likely could see near complete blockages ... not able to differentiate between 50-60% perhaps, but between 50% and 80%?

steveny,

Could you share the cost of the Cleery assessment?

I'm assuming you send them a DVD of the CTA and any writeup from the reviewing cardiologist?

The Cleeerly analysis wasn't cheap -- about 800 bucks. But it was easy to get. In my case, the facility where I had my CTA-A done already has some affiliation with Cleerly; that is, they are listed on Cleerly's site as one they have a relationship with. But I still needed my doctor to formally request that the facility send the CTA to Cleerly. Then Cleerly ran its analysis and sent the report back to the imaging facility, which then sent it to both me and my doctor.

I think the key for you would just be having a doctor put the request in with whatever facility you had the CTA done at. You may need to do some legwork to track down contact info for Cleerly for them if they are unfamiliar with it. But it sounds like your primary care doctor is very willing to work with you and I think that would basically be all you need to make it happen.

I do recommend it at least based on my experience. It is good to get a visualization of exactly what my arteries look like and to know what amount of each type of plaque I have. Will be useful for monitoring progression over time and -- as I said before -- the hopeful side of me is still wondering if I have a higher-than-usual % of calcified plaque and if this makes my situation more favorable/less unfavorable than others. But I haven't had a cardiologist tell me that.

Hi steveny,

Have CTA data disk and assessment by both cardiologists in my area.

I've tried three times to get Clearly to contact me via their website info request form - no joy. Their website also does not have a phone number.

Do you have a method to contact them? Given my cardiologists lack of interest in additional testing, I'm on my own - and, don't mind paying the $800 ish for the analysis.

Thanks!

That sounds very frustrating. My suggestion if you already have the CTA in hand would be to call Simon Med imaging in NYC. They are who I got my scan and Cleerly test through. I think of you explain your situation to them — you have the CTA done already and now you want the Cleerly analysis of it — they would probably be able to guide you on what steps to take. As I said, I do think they needed a doctor’s referral (although I’m not 100% sure; it may just be that they needed a name of a doctor to send the report to), but potentially they could reach out directly to one of your docs to get the authorization if that’s what they need. Or they could also maybe point you to a doctor they work with who could facilitate this for you.

Given that you already have the CTA done, this sounds like it’s mainly just a logistics issue. Here’s Simon Med’s site:
https://www.simonmed.com/locations/ny/carnegie-hill/

Hi Steven,

So, finally got a callback from James Min (https://cleerlyhealth.com/leadership/james-k-min) yesterday ... apologized for not responding via their site. Tried him back, but had to leave VM, again.

Thanks for connection to Simon Med. Will work to connect with Dr Min.

Hi Steveny,

Spoke with Dr Min - and, then asked my cardiologist in writing about using Cleerly. His response:
"The best option is to get your actual CTA and send it to HeartFlow for a measurement of FFR. Cleerly is just determining if you need treatment, but you are already having your risk factors treated. As I previously told you, the presence of calcium makes CTA imaging difficult. HeartFlow is better for determining if any stenting, etc needs to be done."

His response has a better "tone" than previously - maybe because he recognizes I'll just keep leaning into it? 🙂

What do you think about the two products/services - Cleerly vs HeartFlow (https://www.heartflow.com)? There is quite a bit more depth presented in the Professionals pulldown menu.