MGUS and quite high Free Kappa Light Chain and Kappa Lambda Ratio

Hello everyone. I was diagnosed with MGUS a few years ago. After a while, MGUS no longer showed in my blood work. I had heard that it couldn't go away but it isn't showing currently. But I am still concerned about the way that I feel physically. I am sick daily. Very sick. And this is coming from a person who has had a few kidney surgeries and some other health issues. Also, I have seen real sickness when my mother died of cancer. I also watched my mother, and aunt, and a cousin die of cancer as well. So, if I say I'm sick, I don't mean the flu or a head cold.
I continue to see a hematologist. She always says that everything is fine. But something is not right. I have attached a copy of some of my last test results and I'm hoping that someone can make sense of it. I'm no looking to be sick. But I am looking to feel better and hopefully finding out the root cause of my illness. Oh yes, one more thing is that my parathyroid levels are off but according to my nephrologist something is triggering it. It's not the kind of thing that removing thyroids will fix. Help!

Hi @lipstickonmycollar. Love the @name! But not liking that you’re feeling so ill on a daily basis.
Members in the forum can’t interpret results of medical tests, diagnose or offer treatment. But we can use our experience to help each other find answers.

Your blood numbers on the CBC are all in the normal range but your kidney GFR number is quite diminished. You’re seeing a nephrologist so I’m expecting they are aware of the decrease in function and it’s not the cause of your feeling so poorly…though it maybe collateral damage of whatever is causing your illness.

However, Kappa/Lambda light chain ratio is quite elevated. Kappa/Lambda free light chain serum test is a blood test that checks for high levels of certain proteins in your blood. Elevated free light chains might mean you have a plasma cell disorder. Along with the Immunoglobulin G also being higher than normal, this really warrants more action from your hematologist.
I don’t mean to alarm you but this can indicate a more serious transition from MGUS. You are right, MGUS doesn’t go away and can develop into other conditions such as Multiple Myeloma. If your hematologist is cavalier about these light chain results, saying ‘you’re fine’ when you are feeling so ill, it’s time to get another opinion.

What are your daily symptoms?

Thank you so much for your response. I will seek a second opinion. I also forgot to mention that my nephrologist was very concerned. He even told me that he thought there was cancer somewhere and told me to talk to my oncologist and I did. The response was the same from my oncologist. It could be something totally different. But whatever it is, it needs to go. I'm miserable! I'll talk with my PCP and ask for a new referral. I feel encouraged now to advocate for myself.
Again, thank you!!!

I know what it’s like to feel so miserable and be dismissed. My PCP totally missed my diagnosis of a very serious and aggressive blood cancer. Long story, but here I am, 4 years later and I am cancer free. Fortunately the diagnosis came in time to help me, but not from her.
Be assertive and get that referral soon. You know your body better than anyone. ☺️
Please keep me in the loop, ok?

I know what it’s like to feel so miserable and be dismissed. My PCP totally missed my diagnosis of a very serious and aggressive blood cancer. Long story, but here I am, 4 years later and I am cancer free. Fortunately the diagnosis came in time to help me, but not from her.
Be assertive and get that referral soon. You know your body better than anyone. ☺️
Please keep me in the loop, ok?

Thank you both for the advice in this post. Lipstickonmycollar I too have these issues. Been fighting two years to get diagnosed. Lost 50 lbs, no cause, no firm diagnosis to date, but working with hematology oncologist finally! I too have same lambada/kappa proteins off charts, CT with contrast don’t indicate lymph gland enlargement! No PET yet, of course medical/financial/insurance creates barriers to care as well! Profits over lives and care is ridiculous! I return on 2/24 for follow up! I’m thankful I found this group and send healing and comfort to those here and struggling! Will keep watching and reading!

Good morning, @splashgirl1961 Granted there are times when it is a lack of response from a doctor that prevents getting a firm diagnosis. But in the case of blood cancers or autoimmune diseases, it can be like working a huge jigsaw puzzle trying to put the pieces together. I know it’s frustrating so hang in there!
Will you be having any more bloodwork with your followup appt?

Hello everyone. I was diagnosed with MGUS a few years ago. After a while, MGUS no longer showed in my blood work. I had heard that it couldn't go away but it isn't showing currently. But I am still concerned about the way that I feel physically. I am sick daily. Very sick. And this is coming from a person who has had a few kidney surgeries and some other health issues. Also, I have seen real sickness when my mother died of cancer. I also watched my mother, and aunt, and a cousin die of cancer as well. So, if I say I'm sick, I don't mean the flu or a head cold.
I continue to see a hematologist. She always says that everything is fine. But something is not right. I have attached a copy of some of my last test results and I'm hoping that someone can make sense of it. I'm no looking to be sick. But I am looking to feel better and hopefully finding out the root cause of my illness. Oh yes, one more thing is that my parathyroid levels are off but according to my nephrologist something is triggering it. It's not the kind of thing that removing thyroids will fix. Help!

Just received my bloodwork results and I’m feeling anxious because I don’t know what the numbers mean. My appointment isn’t until the 23rd so I will be on edge until I see my doctor.