Newly diagnosed, I think?

Posted by admlizkirk @admlizkirk, Sep 15, 2022

Hello all. New to the group. Just some background on me. I have Primary Biliary Cholangitis and am a Thyroid cancer survivor. I'm 53 years old. I had a CAC test in 2020 and had a score of 1.77. Not zero, but not too high. But I retested today and got a score of 24.4, most of it in the RCA. I have very high cholesterol due to my liver disease and genetics. I am treating with Crestor and Zetia, but I have side effects of Crestor, so I am taking 20 mg every other day. Zetia daily. I was on Repatha injectable, but it was so expensive and neither of my insurance will cover because my CAC wasn't high enough and I haven't been diagnosed with familial hyperlipidemia. Either way, the CAC was shocking to me. I'm 53 years old and it says that is in the 90% percentile. I had a stress test with contrast in 2015 before my thyroid surgery and it was clear, but I'm wondering if I should have other tests? I have a note into my doctor and waiting on a response, but trying not to freak out. I see a lot of scores on here way higher than mine, but it went up kind of quick. I also heard that statins raise the score. Any thoughts?

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jlharsh | @jlharsh | Sep 17, 2022

Similar results with my calcium scan here. My understanding is statins turn unstable plaque into stable plaque that does increase the score. You say you haven’t been diagnosed with FH. Have you been tested? That sure would help, though I understand you may have it and still not test positive for it if you do not have one of the most commonly accepted gene variants that cause it. Have you seen a lipid specialist?

I have FH that is treated more aggressively than typical acquired “high cholesterol”. Getting your diagnosed will help establish your greater need to be more aggressive than the norm. My untreated LDL 0f 300 is what we have been treating and genetic testing eventually explained why, even though we identified the one FH gene defect I do not respond in a typical way. A lipid specialist will help by digging into the weeds and if Repatha is warranted for you they will get you there.

mayoconnectuser1 | @mayoconnectuser1 | Sep 18, 2022

Hi admlizkirk,

I'm not understanding your numbers ... 17.7 puts your "arterial age" at around 59, and 24.4 around 62 ... while not perfect, this seems pretty good?

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