Mended Hearts Open Forum

 View Only
  • 1.  ATTR-CM (Transthyretin Amyloid Cardiomyopathy)

    Posted 03-17-2021 09:10
    Has anyone on here heard of, or had any experience with, ATTR-CM (Transthyretin Amyloid Cardiomyopathy)? Here's my back story: I had open heart surgery coming up on two years ago due to a massive heart attack (my third heart attack) from 5 blood clots in my heart resulting in a CABG x3. Since my surgery, I have been back to the ER at least 25 times due to chest pains. Except for once when they found that one of the grafts had collapsed and they had to put another stent in (my 7th), they said they couldn't find any issue with my heart. They always tell me what it isn't but never tell me what it is. This most recent visit the cardiologist who has treated me every time I've been to the hospital told me that "some people just have constant chest pain". They say it's not my heart but whenever I have the chest pains I can feel it INSIDE my heart. I'm tired of every time I get hit with bad chest pains having to wonder "Is this it? Is this the one that has going to take me out?". Decided to do my own research and stumbled across this potentially fatal yet rarely properly diagnosed condition and found that I had every single symptom: fatigue, chest pains, shortness of breath, irregular heartbeat, tendon rupture in the calves and feet, bilateral carpal tunnel syndrome, gastrointestinal issues, shoulder, hip and knee pain, neuropathy and vision problems. EVERY SINGLE ONE! I sent an email to my regular cardiologist asking her is she could look into it but haven't heard anything back. It seems that doctors these days are scared to go beyond their comfort zone and look at anything that doesn't check all the usual boxes. Anyone on here have any info on it they can provide?

    Brett Temple
    Project Manager
    Sarasota FL

  • 2.  RE: ATTR-CM (Transthyretin Amyloid Cardiomyopathy)

    Posted 10-17-2022 14:45
    Hi Brett -

    My father in law was recently diagnosed with ATTR-CM, so I've been deeply involved in doing research on this.  It's been a while since you posted, I hope you are doing well. Is there any information that I can provide to assist you?  I'd be happy to share what I know about this so far.


    Lee Kelly
    Columbia CT

  • 3.  RE: ATTR-CM (Transthyretin Amyloid Cardiomyopathy)

    Posted 10-18-2022 02:32
    Brett -

    As you've probably read in doing your research, ATTR is very difficult to diagnose because it can have a myriad of symptoms. It can range from carpal-tunnel issues, to tingling in the toes, general fatigue, edema (swelling) in the legs and feet, shortness of breath, etc. Unfortunately many doctors (even cardiologists) are not familiar with ATTR as it is pretty rare. Most won't even test for it until everything else is ruled out.

    If you do have a ATTR-CM (the CM stands for cardiomyopathy)  the amyloid fibrils are deposited in the heart often causing the heart to swell. An ATTR patient will often suffer from AFIB.  The symptoms of AFIB are (from Google):

    • Sensations of a fast, fluttering or pounding heartbeat (palpitations)
    • Chest pain.
    • Dizziness.
    • Fatigue.
    • Lightheadedness.
    • Reduced ability to exercise.
    • Shortness of breath.
    • Weakness.
    The symptoms can come and go. I would probably start there. Insist your doctor test you for AFIB first and see what he finds out. If he refuses to test you, I'd suggest you find a doctor who will.  Amazon even sells AFIB tests that connect to your smartphone, but I can't vouch for their reliability.  If it turns out you have AFIB and/or heart enlargement, you may need to take the next step to see if the enlargement is caused by ATTR, which requires a special test.

    Whatever you do, don't let the doctor blow you off. You know your body better than anyone, and you must continually advocate for yourself.  It is possible that you have ATTR-CM, but I wouldn't quite jump to that yet.  What tests have been performed so far, and what were the results?

    * Disclaimer - please note that I am not a trained medical professional and my advice / comments should not be construed as such.  My comments and opinions should not
       be relied upon to make or inform upon medical decisions.   

    Thanks, Lee

    Lee Kelly
    Columbia CT