Diagnosing amyloidosis: Why monitor (PYP scan) instead of biopsy?

Wait, Modern ultrasound has become more and more sophisticated and safer than biopsy.

But - will ultra sound show if I have the amyloid protein in any heart tissue or any other tissue for that matter? Everything that I gave read from Mayo Clinic about amyloidosis is that a biopsy is the gold standard for diagnosing amyloid. Is there anyone who can give me a definitive answer to this? Can you?

Hi @honeymamabee, I expanded the title of your discussion to reflect your question and added it to the Heart & Blood Health support group as well.

You may also be interested in this related discussion to connect with @jeannepasquinucci @naiviv @bobbyknik and many others who have this treatable condition where faulty proteins build up in the heart.

- Cardiac Amyloidosis
https://connect.mayoclinic.org/discussion/cardiac-amyloidosis-1/
Did you discuss with your doctor why a biopsy is not recommended at this time?

Thank you, Colleen for your input.
Yes, I talked to my Dr last week, and she wants to wait 6 months, and then do another PyP scan. In the meantime, am I just supposed to sit and wait, not knowing whether I have amyloidosis or not. If I do, then not doing anything for 6 months just allows this condition to get a stro ger hold in my body. My heart Dr did not think a heart biopsy was necessary. So she is just going to sit back and wait. I am really upset.

Yes, nothing is better than a tissue sample. I have been in the cath.lab 3 times this year. All uneventful with a skilled cardiologist. Look for academic center for the best.

You could have a bone marrow biopsy. I would ask for your Dr to do a blood test that checks light chains, and urinalysis to check for protein in the urine. I have amyloidosis. It was explained to me they would have to get the exact area of the heart. I also had an equivocal PyP, I then had a cardiac MRI and a strain echo of the heart. I have minimal amyloid in my heart and am receiving treatment.

Thank you,
Thank you, Thank you!!!
You have given me answers that I have looked for and needed. Last Friday, I asked my heart Dr to do a biopsy on me. She said no, and said she was going to do another PyP scan in 6 months. I wanted to flip on her. She wouldn't budge. But then, this is the Dr who said I was just fine 6 months ago and said I didn't need any testing and that I should have many years left. Then 6 months later she does a turn about. My personal Dr said for me to try goi g thru my heart Dr. But he also said that if she would not have biopsy done, that he would see that I got one. Thank you for suggesting what other tests I should have done. I am being treated for heart failure. My afib was surgically corrected. I have unexplained shortness of breath, along with Graves Disease. I had bilateral carpal tunnel syndrome, which was surgically repaired. I am now starting to have neuropathy reay bad in my rt leg, alo g with joints in hand getting ready bad at times with swelling and pain. I could go on, but I think you get the picture. I think all of this is a result of me having covid really bad in January of 2020. As you know, covid was still being denied by Trump and his administration then, until everything was shut down in March 2020. A year and a half later I started getting heart problems, and things continue on a downward spiral since then.
Thank you so much for taking the time to respond to my message .
I hope you are doing well. I live in northern Mich. I will let you know what happens after I have biopsy and a few other tests. Your input means the world to me right now. Thank you for helping a stranger. I will try to pass it on!!
-Sue Rae

My heart Dr did not think a biopsy was warranted- she just wanted to wait 6 months and thought the rests would be more valuable and definitive then. Sure, she doesn't have this problem , so she does not have to live with it for another 6 months until it is found. Yes, I'm ad mad as a wet hen right now- just trying to keep my cool. I'm sure if it were her body, she might feel differently.

My first sign of Amyloidosis was increased protein in my urine….. Had a 24hr urine & had an abnormal amount protein & lots of blood tests from a local doctor with no conclusive answers…. My main complaint at the time was I was lethargic & leg aches. I then went to a urologist (on my own) who did my biopsy of my kidneys & the biopsy was sent to Mayo Clinic in Rochester, Mn. Confirmed the presence of amyloidosis…. The start of my treatment began…. My amyloidosis was in my kidneys & digestive tract, not my heart as many are…. Mayo did many tests on my heart…. Prayers For Answers & Treatment For God’s Best…

Peggyjean- Thank you so much for sharing your hard ordeals with me. All the information you shared with me, is vitally important to me, and helps me get closer to getting testing done. I don't know if you had to advocate for yourself, or whether you had someone to help you, But, YAY!! for you!! I hope that your treatment is going well. But more importantly, that YOU are doing well.
I will post on connect Mayo and will reply to you, if and when I find out anything. In the meantime, I would like to write you back, And find out anything I can about amyloidosis. Again,
Thank you so much, Sue Rae (honeymamabee)