At 76, no cardiologist is willing to give me a CT calcium test

Posted by realitytest @realitytest, Jan 29, 2023

I have a family history of inherited elevated lipids (one of two siblings , younger, passed away two years away of what is being assumed is either a heart attack or stroke.) I'm the only member of my immediate family never to have taken statins.

My lipids are quite variable (at present, somewhat elevated cholesterol and markedly elevated triglycerides), but I'd still like to have this test for information purposes. The last lipid specialist refused ( as with all previous), that "at your age" you're bound to come back with a high calcium score, so why bother?).

When he warned me my insurance wouldn't even cover it, I said I'd pay out of pocket but he was unmoved.

I see plainly on this site that there are quite a range of scores (also that people my age are being tested), and I'd like to know where I stand. After all, I haven't had any diagnostic testing about whether I have any blockages, apart from a recent CT scan (done for other purposes) which, as previous, spoke of "moderate blockages".

I was diagnosed for the first time at age 25 with very elevated lipids and since then my lipid profiles have been coming back with variable results, sometimes quite elevated (especially triglycerides). Two decades ago, the head of Johns Hopkins lipidology told me we have "familial hyperliproteinemia" and that nothing could be done apart from - maybe - behavioral changes: avoid carbs (especially refined) and alcohol, lose weight and exercise.

I did all four and my lipids improved dramatically. Since then I've done my best to stay slender, (a bit of yoyo there), exercise and minimize/avoid carbs and alcohol.
Of the four, weight and carb avoidance seem to factor most in my lipid test results. My cardiac issues so far as I know, are paroxysmal AFIB (Xarelto) and occasional unprovoked tacchycardia, once for three weeks.

I WOULD like to have the CT calcium test (arterial calcium has showed up on Xrays) as the least invasive check for blockages, but as reported, no one is willing. Is this unusual? Are my local doctors behind the times - or ahead?

Thank you.

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Hi @realitytest, it’s mystifying to me why your doctors won’t go along with your wanting a Calcium Score Scan. But from my understanding these are available without prescription in most parts of the US. In my city, the local heart institute takes them for anyone on a ‘walk-in’ basis, though an appointment is necessary. They charge a flat fee of $50.00, a cardiologist reads the results and then a report is sent to you. No insurance is necessary.

I have relatives in other parts of the country who have also taken advantage of the flat fee scans through their local hospital or cardiac speciality center.

Try checking in your local area to see if this is available for you.

REPLY

First, realitytest, one would wonder why you aren't on a statin. I'm assuming they have been recommended?

Second, without some lipid numbers, it is hard to assess why doctor isn't doing more? Get CardioIQ/advanced lipid panel.

Third - pay the $50-100 and get CAC screening.

Fourth, no mention of stress test - should be easy for your PCP to order this. Same with echo with ge stress test.

Let us know?

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I have a friend in her '80s who just had a calcium score done. Her doctor was not at all reluctant to write the prescription. Insurance didn't cover the test but it's under $100 at most places. So I'm not certain why your doctor is reluctant as it can yield helpful information. I have chronically high cholesterol and cannot tolerate statins in any form. However a really low calcium score, a good Endopat score, and an excellent echocardiogram
were enough to reassure my cardiologist that the cholesterol is not causing problems. Unless your doctor has some other thought that it's risky for some reason?

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I think you need a new doctor! If I am not mistaken, a 74 year-old was given a new heart at the Vancouver, B, Canada Hospital. I believe it was the first of its kind at that age. The last I heard the gentleman was golfing.

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I have seen four cardiologists in town: my regular "ordinary" cardiologist, two interventional cardiologists (looking into a watchman procedure to avoid blood thinners for reasons to do with my retinas), and this latest lipid specialist. Of course, I have a PCP too.

I didn't ask for the CT calcium test except from this latest doc, my cardiologist, and my PCP. (All refused). For the record, I WANT to avoid statins if at all possible and the doctors seem to think my lipid profile doesn't warrant them. I know they can be life-saving but they are are far from free of side effects (the brother who passed away, had developed rhabdomyalosis to the degree it had damaged his kidneys - nb. father died of kidney failure.)
And there are other reasons to hesitate too.

I'd still like to have a CT calcium test, even if I'm not in dire straits by any means (as measures below reveal.) But no, I can't bypass the nay-saying doctors in town as there are no walk in clinics or cardiac centers. My rural area is most known for our football team. *Sigh*

I'll provide my most recent lipid panel (below) hoping whoever insisted he couldn't comment without seeing it, will provide knowledgable commentary. 🙂 Typing it out wasn't fun!

Please note I did really well on a (to me) new test - lipoprotein (A) on which I scored <10 which looks super great to me, considering anything below 75 at this lab is "normal", 75 - 125 is "moderate" and over 125 is called "high" . (I think this test blew him away which may have reassured him about my lipids.) It reveals the presence or absence of tiny lipid particles in ones blood stream, supposedly very useful prognostically.

The lipid pane itself:
triglycerides 185 "high" ; 150-174 "borderline high"
cholesterol 209 "high" but anything under 200 is counted as normal
HDL cholesterol 67 (=>60 normal, <50 low "bad for females",<40 low, "bad"
for males.
Non HDL cholesterol 142 ("Standard =<157 "Normal")
<100 Target level for high risk ASCVD patient
<130 Optimal for general population
130-159 Near optimal for general population
LDL Cholesterol 105 mg/dL
Standard Range
<=129 mg/dL
<70 Target level for high risk ASCVD patient
<100 Optimal for general population
100-129 Near optimal for general population
I guess he doesn't count me in the ASCVD category.

He said my triglycerides were "a little high" but from my embarrassed description of my months long carb binge, he figured it was entirely a function of that (he's right. I went on a bread and yogurt ""diet" for a few months after the KETO diet drove me mad. "Diet" JK ) I know I can get it back down.

My last echocardiogram at the Cleveland Clinic gave good results, with the caveat that the reader said the accuracy was "limited by patient's 'body habitus' '"WHATEVER THAT MEANS! (No, I'm not overweight) I've been told I have "mild" mitral valve prolapse and "slight"" mitral valve regurgitation, plus either "slight" or "moderate" aortic insufficiency (depending on who reports).

Also, I don't need a stress test as I have been working out regularly for years, aerobically/anaerobically on both treadmill and stairstepper doing HIIT technique and my pulse goes up to 155-160 on intense phase, then down again on low phase, returning to my normal 65 or so, pretty soon after. I DO have AFIB especially before waking, sometimes for hours - and have had unprovoked, protracted tacchycardia (weeks at a time. Hence visit to Cleveland CLinic to arrhythmia specialist . He gave me a new pill but otherwise blew it off).
Sleeping BP averages 50 (I have an Apple sleep app).

I also work on weight machines regularly. [Conditional, actually I have hardly been working out at all for a month following an injury. Otherwise, I consider myself fit from a cardiovascular POV, and ordinary cardio thinks so too (doesn't object to my high pulse on exercise.)

So now you have my cardiac profile!*
*All except for the CT calcium test. 🙁 I do NOT like this attitude that once one is a certain age, there's no point in checking it. For instance, if it yields a high score, it would goose me into a healthier diet and more consistent exercise!

Thanks, advisors!

REPLY

You don't need a calcium test, just goose yourself.
However, you go to the Cleveland clinic but can't figure out how to get a Calcium test?
Gimme your zipcode and I will find you a non doctor ordered location in 30 milliseconds.

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Realitytest,

I'm trying to take all this in.

So, you are a heart patient, with Cardiovascular Disease or Coronary Artery Disease, right? Or, perhaps I read your summary wrong.

Have you ever taken meds for hypertension? What is your untreated blood pressure? Apparently you have a family/genetic history?

Your triglyceride number is very high, your LDL number is high and your total cholesterol is high - for your circumstances. Given these, it would seem statin therapy would be beneficial - lots of data on this.

Whether you have been working out is not really relevant to the advisability of a stress test IMO. And the ultrasound echo before and after a stress test may not be the echo to which you are referring - it sounds as if you are referring to an ECG (what Americans call an EKG?).

CAC screen test is cheap - pay for it and use the data it provides, combined with other data, to take next steps. If you have high CAC, insist on a CTA to assess where it is. If you want to invest yourself, find a Cleerly approved cardiologist (it's actually the machine, I think) to do a CTA for Cleerly analysis.

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@realitytest

I have seen four cardiologists in town: my regular "ordinary" cardiologist, two interventional cardiologists (looking into a watchman procedure to avoid blood thinners for reasons to do with my retinas), and this latest lipid specialist. Of course, I have a PCP too.

I didn't ask for the CT calcium test except from this latest doc, my cardiologist, and my PCP. (All refused). For the record, I WANT to avoid statins if at all possible and the doctors seem to think my lipid profile doesn't warrant them. I know they can be life-saving but they are are far from free of side effects (the brother who passed away, had developed rhabdomyalosis to the degree it had damaged his kidneys - nb. father died of kidney failure.)
And there are other reasons to hesitate too.

I'd still like to have a CT calcium test, even if I'm not in dire straits by any means (as measures below reveal.) But no, I can't bypass the nay-saying doctors in town as there are no walk in clinics or cardiac centers. My rural area is most known for our football team. *Sigh*

I'll provide my most recent lipid panel (below) hoping whoever insisted he couldn't comment without seeing it, will provide knowledgable commentary. 🙂 Typing it out wasn't fun!

Please note I did really well on a (to me) new test - lipoprotein (A) on which I scored <10 which looks super great to me, considering anything below 75 at this lab is "normal", 75 - 125 is "moderate" and over 125 is called "high" . (I think this test blew him away which may have reassured him about my lipids.) It reveals the presence or absence of tiny lipid particles in ones blood stream, supposedly very useful prognostically.

The lipid pane itself:
triglycerides 185 "high" ; 150-174 "borderline high"
cholesterol 209 "high" but anything under 200 is counted as normal
HDL cholesterol 67 (=>60 normal, <50 low "bad for females",<40 low, "bad"
for males.
Non HDL cholesterol 142 ("Standard =<157 "Normal")
<100 Target level for high risk ASCVD patient
<130 Optimal for general population
130-159 Near optimal for general population
LDL Cholesterol 105 mg/dL
Standard Range
<=129 mg/dL
<70 Target level for high risk ASCVD patient
<100 Optimal for general population
100-129 Near optimal for general population
I guess he doesn't count me in the ASCVD category.

He said my triglycerides were "a little high" but from my embarrassed description of my months long carb binge, he figured it was entirely a function of that (he's right. I went on a bread and yogurt ""diet" for a few months after the KETO diet drove me mad. "Diet" JK ) I know I can get it back down.

My last echocardiogram at the Cleveland Clinic gave good results, with the caveat that the reader said the accuracy was "limited by patient's 'body habitus' '"WHATEVER THAT MEANS! (No, I'm not overweight) I've been told I have "mild" mitral valve prolapse and "slight"" mitral valve regurgitation, plus either "slight" or "moderate" aortic insufficiency (depending on who reports).

Also, I don't need a stress test as I have been working out regularly for years, aerobically/anaerobically on both treadmill and stairstepper doing HIIT technique and my pulse goes up to 155-160 on intense phase, then down again on low phase, returning to my normal 65 or so, pretty soon after. I DO have AFIB especially before waking, sometimes for hours - and have had unprovoked, protracted tacchycardia (weeks at a time. Hence visit to Cleveland CLinic to arrhythmia specialist . He gave me a new pill but otherwise blew it off).
Sleeping BP averages 50 (I have an Apple sleep app).

I also work on weight machines regularly. [Conditional, actually I have hardly been working out at all for a month following an injury. Otherwise, I consider myself fit from a cardiovascular POV, and ordinary cardio thinks so too (doesn't object to my high pulse on exercise.)

So now you have my cardiac profile!*
*All except for the CT calcium test. 🙁 I do NOT like this attitude that once one is a certain age, there's no point in checking it. For instance, if it yields a high score, it would goose me into a healthier diet and more consistent exercise!

Thanks, advisors!

Jump to this post

Some radiologists will give CAC test with no script

REPLY
@cleerlyseeker

You don't need a calcium test, just goose yourself.
However, you go to the Cleveland clinic but can't figure out how to get a Calcium test?
Gimme your zipcode and I will find you a non doctor ordered location in 30 milliseconds.

Jump to this post

Being able to make an appt with a highly rated arrhythmia specialist at the Cleveland Clinic doesn'y mean I "can't figure out how to get get a Calcium test". I can't write myself a referral for such a test.

I can't tell my doctors what to do. (I said I'd pay out of pocket when they warned me insurance might not cover it.)

My zip code is 16827.

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@realitytest

Being able to make an appt with a highly rated arrhythmia specialist at the Cleveland Clinic doesn'y mean I "can't figure out how to get get a Calcium test". I can't write myself a referral for such a test.

I can't tell my doctors what to do. (I said I'd pay out of pocket when they warned me insurance might not cover it.)

My zip code is 16827.

Jump to this post

u do seem to be in a selfcare desert after i tried my best. maybe call the "highly rated arrhythmia specialist at the Cleveland Clinic" and ask him to rx...

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