What is the next step for amyloidosis - unknown type?

Posted by rdiehl45 @rdiehl45, Jun 1 7:02am

Recent carpal tunnel release found amyloidosis but insufficient tissue for biopsy. I live near Des Moines and she wants to send me to a cardiologist. Should I just skip that and head straight to the Mayo Clinic? I joined a support group on Facebook and numerous people said go to the Mayo Clinic. My only symptom at this point was my bilateral carpal tunnel. I have just begun reading about this disease. As the carpal tunnel developed a few years back in both arms I also began having a lot of digestive issues and diagnosed with Barretts.
I think my biggest concern is seeing what I have to determine whether the next steps are.
My father had IHSS. It was diagnosed in the 1980s and he died in 92. It was very severe and I’m wondering if it could’ve been misdiagnosed.

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Lori, Volunteer Mentor | @loribmt | Jun 1 8:47am

Hi @rdiehl. With a your new diagnosis, and your concerns that this may be familial, do to your father’s possible mis-diagnosis years ago, it doesn’t hurts to get a second opinion. Since your doctor recommended a local cardiologist you may want to start there if there’s a chance of getting an earlier appointment. At least then you’d have a confirmation of your diagnosis and can proceed from there.

If you’d like to request an appointment at Mayo, here is a link to get you started: http://mayocl.in/1mtmR63. You don’t need a referral but it can help if you have your doctor’s input.

Carpal tunnel can sometimes be a sign of ATTR or Transthyretin amyloid cardiomyopathy so that’s why your doctor is suggesting a cardiologist. It isn’t always the case, but your doctor wants to rule that out.
Here are a couple of informational articles that may help give you a better understanding of ATTR:
From the American Heart Association:
https://www.heart.org/en/health-topics/cardiomyopathy/what-is-cardiomyopathy-in-adults/transthyretin-amyloid-cardiomyopathy-attr-cm
Health central.com
https://www.healthcentral.com/slideshow/transthyretin-cardiac-amyloidosis-signs
There are also several discussions currently in Connect with members who have similar stories as your own. I wasn’t sure which link to provide for you so I’ve taken the liberty of posting my search. Click this link to see the full listing. You can pick and choose what’s most relevant for you.
https://connect.mayoclinic.org/search/?search=Carpal+tunnel+and+heart+ATTR
Again, this doesn’t mean your carpal tunnel is related to ATTR but your doctor wants to make sure you follow up with the potential diagnosis. Did your father have similar symptoms?

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