1. < Blood Cancers & Disorders

Desperately seek answer . really high kappa lambda light chain numbers

Posted by randyb66 @randyb66, Aug 15 8:24pm

I am seeking answers to a recent urine test that I had done. It was done because my cardiologist is investigating as to whether or not I might have a disorder called ATTR ( Transthyretin Amyloid cardiomyopothy) a rare and very under diagnosed protein disorder. However, in the investigation as I stated a urine test was done checking for this kappa lambda light chain with ratio. I get this one test is non diagnostic. However given the normal levels and the research I have done to try and find answers I have come to learn that my numbers are quite high. And not just one. The Kappa number was 57.09 and the Lambda number was 7.31. The Ratio number was 7.81. I know what all this could mean and I have mentioned it to my doctor who ordered the test but all his office will tell me is that the test is non diagnostic and nothing more. I am also waiting on the results of a nuclear heart test. But everyday I grow more concerned and worried. As my symptoms have only worsened with time. Another test the same lab did, a blood test had indeterminate results and highly recommended the test be repeated in 4 weeks. Should I truly be seeking out a doctor who specializes in blood cancers and disorders. I am new to all this and have no idea what I should be doing next. And I am getting no answers from the doctors I am already dealing with. On top of this I was also instructed by an eye surgeon to see a gastroentrologist about a colonoscopy as I have black dots on my retinas in both eyes that are most commonly associated with colon cancer. So I am becoming very desperate for answers here. If there is anything anyone can offer to help easy my mind some I would really appreciate it.

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singularity | @singularity | Aug 22 8:26pm
In reply to @randyb66 "I do appreciate the recommendation. I eat my fair share if fresh pineapple as I truly..." + (show)
@randyb66

I do appreciate the recommendation. I eat my fair share if fresh pineapple as I truly enjoy it. However the black dots I have been diagnosed with don't float. They are scar structures upon the retina itself. But I have begun the testing thru gastroentrology. And only one test so far has come back "abnormal" in the stool samples. So once again, I am put in the position of having more questions than answers still. And I am still waiting on the nuclear heart test results.

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Having lots of questions is a good thing because questions lead to answers and often the right answer is a stumble-upon

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randyb66 | @randyb66 | Aug 23 8:19am
In reply to @singularity "I'll be seeing my GP on Tuesday and asking for more info about ATTR. I think..." + (show)
@singularity

I'll be seeing my GP on Tuesday and asking for more info about ATTR. I think I share the same concerns as you do.

Doctors are as human as the rest of us but they do know stuff. You need the doctors as well as to take care of yourself. Asking the right questions is important. I don't think I have ATTR but I do think there is value in feeding the question into their equation.

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That is all that matters. As with me, I simply wanted to eliminate that possibility. And it's not that I fault doctors. They have an extremely difficult profession as medical science is ever changing and new diagnosis and diagnostic abilities are coming about every day. And like I said, due to the symptoms, only a cardiologist specialist will put the pieces of the puzzle together. I have spoken to doctors that never even heard of the disorder ATTR. My gastroentrologist even had to research out the black dots on my retinal being commonly associated with colon cancer. She admitted that she had once heard something about it, but never looked into it until it was the reason for my wanting to see them. So no single doctor can be expected to know everything. But I absolutely love a doctor who is not only willing to listen, but is then willing to take the time to research out for themselves the possibility of there being a disorder they don't know about. One that will think outside the box when necessary. It shows they truly care about their patient and solving their patient issues.

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8positive | @8positive | Oct 6 10:43pm
In reply to @singularity "I'll be seeing my GP on Tuesday and asking for more info about ATTR. I think..." + (show)
@singularity

I'll be seeing my GP on Tuesday and asking for more info about ATTR. I think I share the same concerns as you do.

Doctors are as human as the rest of us but they do know stuff. You need the doctors as well as to take care of yourself. Asking the right questions is important. I don't think I have ATTR but I do think there is value in feeding the question into their equation.

Jump to this post

For what it is worth you should have blood tests with kappa lambda ratio and see Hematologyoncology to decide if you have pre myeloma.
I have mgus the kappa is not as high as yours but I got mine down from 2.9 to 2.2 with healthy plant based diet low to no sugar it might help you although you have to be careful if your kidney is struggling some veggies can make that worse. Keep up your exercising and stay hopeful!!

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1 reply
sallik74 | @sallik74 | Oct 6 10:53pm
In reply to @8positive "For what it is worth you should have blood tests with kappa lambda ratio and see..." + (show)
@8positive

For what it is worth you should have blood tests with kappa lambda ratio and see Hematologyoncology to decide if you have pre myeloma.
I have mgus the kappa is not as high as yours but I got mine down from 2.9 to 2.2 with healthy plant based diet low to no sugar it might help you although you have to be careful if your kidney is struggling some veggies can make that worse. Keep up your exercising and stay hopeful!!

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What vegetables are bad for the kidneys

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8positive | @8positive | Oct 7 7:03am

Lentils peas beans broccoli are high in phosphorus
Lower phosphorus veggies and fruits are cabbage lettuce peppers tomato cherries pineapple blueberries

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Mentor
Patty, Volunteer Mentor | @pmm | Oct 7 9:28am

This is a very interesting discussion, and I had not really thought about my diet much from the standpoint of Phosphorus content. I found this Mayo information. My kidney function has so far been good, but monitoring my kidney function is part of my blood test regimen Every six months related to my MGUS diagnosis.
https://www.mayoclinic.org/diseases-conditions/chronic-kidney-disease/expert-answers/food-and-nutrition/faq-20058408#:~:text=Check%20food%20labels%20carefully,Sodium%20tripolyphosphate

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