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I get it, most of us are probably not doctors, but since I’m still undiagnosed I was wondering if anyone has had similar blood results that lead to an amyloidosis diagnosis:
Vitamin B12 Level 1818 pg/ml High. Was 1548 on 2/24/26 and already high
Free Kappa 20.7 High
Lactate Dehydrogenase 121 unit/L Low
Carbon dioxide level 31 mmol/L high
Calculated Osmolality 272 mOsm/kg Low
Alpha 2 concentration .46 gm/dl Low
Beta w concentration .14 gm/dl Low
Total protein 6.3 gm/dl Low
Free Kappa 21.7 mg/L… read more
You should have a pyp test to diagnose what type of amyloidosis you have. You should be put on medication as soon as possible.
Your labs are very similar to mine. I take Venclexta pills everyday with a Darzalex infusion once a month to treat AL type Amyloidosis. My numbers are improving since I started in 2024.
Very similar story with me, test results go down. My next try if Weds Dr is OK with it is to increase supplement to 5 X then test it every two months.
I was dx with amyloidosis 3 year ago and put on Vyndamax. When Amvuttra was approved last summer, I was changed to it. The only known side effect of Amvuttra was that it lowers Vitamin A. A blood test for vitamin A was done soon after I started the Amvutra and it came back extremely low...5%. with the normal at 69.
Very low Vitamin A can cause lots of eye symptoms. I have been having lots of trouble reading...need a mag glass!!.My doctor said to take 8 times the recommended Vit A
The company that makes Amvutra says to only take the normal recommended Vitamin A.
Since Amvutra is injected every three months, I did not know who to believe. I went with what the company recommended. A blood test for Vit A last week shows a Vit A level of 9! I have decided to take 4 times the recommended dose and see what that does to my Vit.A level.
I believe the eye problems are caused by the low Vit A and not the disease.
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