being cleerly blocked

Posted by cleerlyseeker @cleerlyseeker, Jan 7, 2023

70 yr old male. Had a widowmaker 12/19, stented. presently Ldl 45, ApoB 47, tri 69, bp 114/70 so numbers excellent. Calcium score paid out of pocket/cardiologist refused to order, 898. I want to know my at risk soft plaque status.
Want the Cleerly test, cardiologist refuses to order "won't change treatment". Its info I want, fu. Regular provider refuses doesn't want to piss off cardiologist.
Local imaging center has a work around, requires an additional $800 expense for outside doctor to rx and interpret. The money means nothing, the attempt to force me into paying it means everything, so I am trying to figure out a way to switch cardiologists to one who will rx (wont be covered by insurance but imaging center requires an order).
So any ideas how to cardiologist shop within my Humana Medicare HMO? Tried to get office practice manage to call me, no luck.

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@cleerlyseeker

Saw my new cardiologist today, a nurse practitioner who who runs the "lipid clinic".
Finally, a progressive thinker. I hit the lotto. Not only did she rx Repatha (I chose the once a month 420 ml.) but she gave me a free sample that her asst helped me infuse. Nice $500 gift.
So I can't wait to go back in 30 days and get an ldl-c of 20.
Bingo.

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for those that question the efficacy of pcsk9 inhibitors after only ONE DAY OF REPATHA-
ldl-c one day of pcsk9- 25 down 44% from 12/14
cholesterol one day of pcsk9- 73 down 28% from 12/14
triglycerides one day of pcsk9- 59 down 14% from 12/14

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@cleerlyseeker

for those that question the efficacy of pcsk9 inhibitors after only ONE DAY OF REPATHA-
ldl-c one day of pcsk9- 25 down 44% from 12/14
cholesterol one day of pcsk9- 73 down 28% from 12/14
triglycerides one day of pcsk9- 59 down 14% from 12/14

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Good stuff - keep us advised, please!

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@cleerlyseeker

Cleerly results back.
To recap:
Widowmaker HA 12/2019, stent placed.
Over the next 3 years drove numbers down(medications, exercise, diet (185 down to 170)) to(12/14/2022):
bp 115/75
Apolipoprotein B 47 mg/dL
Triglycerides 69 mg/dL
Cholesterol 101 mg/dL
LDL C 45 mg/dL
Calcium Test (8/30/22)
Left main coronary artery: 0
Left anterior descending coronary artery: 824.2
Circumflex coronary artery: 74.6
Right coronary artery: 74.5
Total Calcium Scoring: 973.2
Needless to say, my calcium test threw me into a funk for a couple days.
My pos cardiologist (who I love) refused to order a Cleerly test, found a location in Detroit while visiting relatives all in for $2k.
I was 100% sure I would have a scary amount of low density non calcified plaque.

For all arteries:
0% Low-Density-Non-Calcified Plaque Volume

So absolutely no so-called very vulnerable plaque. Quite shocked, that was the main reason I spent the money on this test, to get this info.
Other mild to moderate stenosis and combo calcified and non calcified plaque in 3 vessels as anticipated by previous calcium results. By the way, this info (multi-vessel presence) sucks for me as it increases my risk many fold.
My journey continues. As I explained to a friend who asked "what does it mean" i replied:
It means the gun has been removed from the back of my head. The bus will still eventually run me over, maybe even today, but I can live with that.

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Congrats on 0 LDNCP, but what about the other non-calcified plaque?
Based on your information, it seems you have been on a statin which appears to have helped with your low density results. Have you tried PCSK9i?

BTW my last CAC score was 1883 (down from 1923 the year before) after 21 years on statin. So, I am hoping that CLEERLY will show similar LDNCP results. Still fighting to get it approved- same story here in NC where cardiologists "refuse" to prescribe. What's with these SOC doctors who refuse patients requests?

Finally got RX from telehealth doctor, but trying to find imaging center that will cooperate. Closest CLEERLY search found one in Charlotte and one in Richmond, 160 + miles from me.

Using Biomarkers is a fools errand. Getting a quantitative analysis of the actual plaque and it's "vulnerability" is the real deal. Thanks for sharing your journey.

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@laketahoebob

Congrats on 0 LDNCP, but what about the other non-calcified plaque?
Based on your information, it seems you have been on a statin which appears to have helped with your low density results. Have you tried PCSK9i?

BTW my last CAC score was 1883 (down from 1923 the year before) after 21 years on statin. So, I am hoping that CLEERLY will show similar LDNCP results. Still fighting to get it approved- same story here in NC where cardiologists "refuse" to prescribe. What's with these SOC doctors who refuse patients requests?

Finally got RX from telehealth doctor, but trying to find imaging center that will cooperate. Closest CLEERLY search found one in Charlotte and one in Richmond, 160 + miles from me.

Using Biomarkers is a fools errand. Getting a quantitative analysis of the actual plaque and it's "vulnerability" is the real deal. Thanks for sharing your journey.

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laketahoebob,

Yours is the only report I have ever seen of someone who had a CAC score go down ... it was only 2.1%, but still the FIRST. Was this scoring done at the same facility with the same device? If so, this is interesting for sure.

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@mayoconnectuser1

laketahoebob,

Yours is the only report I have ever seen of someone who had a CAC score go down ... it was only 2.1%, but still the FIRST. Was this scoring done at the same facility with the same device? If so, this is interesting for sure.

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I am not convinced that the CAC score actually went down. There is always a standard deviation or error band on any measurement. You are correct that the scores were performed in different facilities and different scanners.

However, my conclusion is that the dramatic increase from a my 35 CAC score in 2001 to the 1907 score in 2019 (performed on different scanners) was real. The "decrease" in my 2020 CAC score was hopefully caused by the lifestyle (I lost 25% of my body weight), dietary and medication changes over the 1-1/2 year period between CAC scores.

I also use CIMT to track plaque progression in my carotid arteries. During the 2019-2020 period, my CIMT did not change significantly. The analysis showed some plaque progression in the carotid arteries but "all" was deemed to be calcified and stable. This is somewhat contradictory of the CAC score stabilization.

There are a number of "real" reductions in plaque volume measured with Q-CCTA (Quantitative CCTA- CLEERLY), presumably caused by interventions between the Q-CCTAs. In most of these cases the calcified plaque increased as the dangerous non-calcified plaque decreased.

I am endeavoring to have my 2020 CCTA analyzed by CLEERLY and then compared to a new CLEERLY Q-CCTA later this year to see what has happened to my plaque during the 2-1/2 year lifestyle, medication and dietary interventions.

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Thanks - yep, I understand the CLEERY process. Obviously, their scans and process will not directly align with CAC scores, especially when the other CAC scores were obtained with different equipment.

An increase from 35 to 1907 over 20 years is not unexpected - but, even that is in excess of what some say is expected - on the order of 15% per year which would equal around 575 or so. To get to 1907 the year over year increase would be around 25%/year.

I have read hundreds of threads about CAC scores - none have ever gone down, but most of them were comparing scores around 3-5 years apart, and most used the same facilities for the scoring.

Many of those reporting made significant lifestyle changes as you have - but, again, none reported lesser scores. My sense is that the lifestyle changes you made have slowed the increase, but other factors are likely present.

Frankly, even if your CAC score stayed the same over a period of 18 months it would highly unusual.

Please keep reporting on your findings.

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@mayoconnectuser1

Thanks - yep, I understand the CLEERY process. Obviously, their scans and process will not directly align with CAC scores, especially when the other CAC scores were obtained with different equipment.

An increase from 35 to 1907 over 20 years is not unexpected - but, even that is in excess of what some say is expected - on the order of 15% per year which would equal around 575 or so. To get to 1907 the year over year increase would be around 25%/year.

I have read hundreds of threads about CAC scores - none have ever gone down, but most of them were comparing scores around 3-5 years apart, and most used the same facilities for the scoring.

Many of those reporting made significant lifestyle changes as you have - but, again, none reported lesser scores. My sense is that the lifestyle changes you made have slowed the increase, but other factors are likely present.

Frankly, even if your CAC score stayed the same over a period of 18 months it would highly unusual.

Please keep reporting on your findings.

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One significant change from 2001 was the initiation of Atorvastatin in 2001. The approximate annual increase was about 52%/yr in the first 10 years, 40%/yr in the next 7 years, and -1.3%/yr in the last 1.8 years. Guessing that much of the first 10+ years might have been catch up to stabilize the prior soft plaque built up over many years.

The thing is- all of this information is really not what is at the core of my coronary status or prognosis. CLEERLY seems to be the tool that can quantitatively show my disease status and help me understand what has been accomplished so far, and what might need to be done going forward. It's just hard to find cardiologists and/or imaging sources to perform the CLEERLY analysis. Also, want to have my 2020 CCTA analyzed, but same problem, no one has agreed to analyze.

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@laketahoebob

One significant change from 2001 was the initiation of Atorvastatin in 2001. The approximate annual increase was about 52%/yr in the first 10 years, 40%/yr in the next 7 years, and -1.3%/yr in the last 1.8 years. Guessing that much of the first 10+ years might have been catch up to stabilize the prior soft plaque built up over many years.

The thing is- all of this information is really not what is at the core of my coronary status or prognosis. CLEERLY seems to be the tool that can quantitatively show my disease status and help me understand what has been accomplished so far, and what might need to be done going forward. It's just hard to find cardiologists and/or imaging sources to perform the CLEERLY analysis. Also, want to have my 2020 CCTA analyzed, but same problem, no one has agreed to analyze.

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LTB,

Agree - amount of calcified plaque would increase with statins. One could surmise that once the available plaque is reduced, there could be a flattening of the curve.

My understanding is that CLEERLY requires a different CT data set, so this forces one to their approved facilities/organizations ... this was the dead end I faced.

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That might be possible, but it would be a surprise. My data set was taken on a 256 slice scanner and was submitted to HeartFlow about a month after the scan for further analysis with no problem.

No CLEERLY imaging center has said anything about incompatibility, only that they would not submit any data not created by their own center. Likely just want to drum up their own business. However, I will try to follow up. Thanks.

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@cleerlyseeker

In a dramatic change of events the practice manage from Humana finally contacted me and seemed very sympathetic and promised to solve my problem so I called and cancelled the Hearthealth appt hoping I will get the referral for free.
Criminals 0, Hero 0

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It sounds like there's been a positive development in your situation with Humana! It's great that the practice manager reached out to you and seemed sympathetic to your concerns. Cancelling the appointment with Hearthealth in hopes of getting the referral for free seems like a strategic move given the circumstances.

It seems like things are looking up, and hopefully, this resolution will bring you closer to resolving the issue you've been facing. Keep up the proactive approach, and hopefully,
https://reminiapkking.com/

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