new to all of this and am unsure about some tests that were ordered recently for my by my neurologist.
Are these considered normal? I see they are in range, but I ask because the Kappa seems on high end and isnt there supposed to be no protein detected in Urine? Could anyone with experience with Bence Jones or Kappa Lambda Serum take a look?
I have been trying to figure it out for a few days now and don’t have an appointment until January. I know I don’t have cancer because I have a polyclonal gammopathy, I’m just trying to better understand what might be ahead. I have Autoimmune Gastritis and am post Graves (fully dependent of hypo thyroid meds and optimal for almost two years now) and don’t feel well.
Help is much appreciated, thanks!
** Also high in range Albumin in a protein electrophoresis, as a well as a lower in range creatine in blood test. And a high Gamma percent but higher in range Gamma.
Bence Jones Qualitative Random
Hours& volume: Random
Total protein: = 0.91 ref range: 10-140 mg/d
Albumin: detected ref range: detected
Alpha-1 urine: detected ref range: not detected
Alpha-2 urine: detected ref range: not detected
Urine beta globulin: detected ref range: not detected
Gamma urine: detected ref range: not detected
IFE interpretation: urine is negative for monoclonal free light chains
Kappa/Lambda Ratio (calc.) : 1.22 ratio: 0.26-1.65
* also am afraid the lab screwed up my tests? I went in to get these and more done and they only completed some (including Bence Jones) but had to go back and get the Kappa and Lambda completed on a different day as I wasnt notified that they didn’t do it..
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Hi Jenna! Your urine looks like you are spilling free light chains consistent with polyclonal gammopathy. Bence Jones is a high kappa/lambda level associated monoclonal gammopathy and multiple myeloma. Your serum free light chains ratio looks normal. This is reassuring as serum would best characterize a monoclonal gammopathy. The ratio of 1.22 is in perfect range. It is rare for doctors to do urine light chains anymore since serum is a better and more accurate test.
I am confused how protein in your urine is mighty low yet albumin, light chains and globulin are detected. Do you have a history of nephritis or nephropathy?
I hope this helps a little bit. I would ask your doc about kidney function and what the protein in your urine signifies.
High Jmiller623, thank you for your message , so just to make sure I’m understanding you correctly, the high I. range Kappa is not worrisome? I’m glad it’s not multiple myeloma.
As far as your second question goes, I have looked over past urine results with 1+ protein etc. but have never been talked to by a doctor about it and am also interested now that you’ve mentioned it. I have not been diagnosed with anything further than Autoimmune Gastritis, Raynauds, and post graves as there has been enough positive information. Your comment has been extremely helpful and I will be asking thank you so much, I appreciate it!
Yes, it is normal to have more kappa compared to lambda light chains. The ratio should be slightly greater than 1. Its time to start worrying when the ratio is <0.6 or >1.5 as the standard indicates. Healthy normal people run 1.0-1.2. No one knows why we make more kappa. One of the great accepted unknowns.
I hope your doc helps shed clarity on your situation. Keep us up to date! Always happy to help quell worries.
That is a relief to know, thank you! I hope he does, it would be good to know and get more answers. I did call yesterday and ask for an early appointment so should be getting results soon and will make an updated post. You’ve given me some confidence and some comfort, thank you again.
Hi Jmiller623, I went to the appointment and my neurologist was not very helpful unfortunately. He said that everything is within range and I am not sure if he is just not the right one to ask so I will be asking further with my primary. It seems that doctors I have come in contact with often do not get worried until both symptoms and results are obvious and line up. I have been passed around alot as doctors are not all sure what is wrong with me. This Neurologist still doesn't understand that Autoimmune Gastritis can cause indirect PA / Low B12 due to the Parietal cells being attacked (which make Instrinsic Factor and Stomach acid) as he is still hung up on negative IF antibodies so I guess this is why we have specialists for different areas of our bodies.
Hi Jenna. This is the most frustrating part about having an autoimmune condition. Things are negative and you get shuttled around to different specialists who have different opinions. Some don’t know much about lupus, sjogrens and others of the like. If your neurologist says they are normal, they probably are. You should see a nephrologist for your kidneys. It might be most helpful to see a rheumatologist given your history.
Sometimes doctors are no help at all. Some will make you feel worse or crazy. You’re not alone. Don’t let them get you downtrodden. You know something isn’t right. Sometimes you really have to search for the answers.
Thank you, I definitely wont let them get me down and I very much agree with you. It's become quite a process and I'm sure I'm not the only one who has said that. Not sure that I will be able to see a Nephrologist as this doctor said I am normal and it may be hard to get in without a referral. Even though I have ppo insurance as I am younger than most patients, even today I found out someone else I know got in to a specific doctor with PPO insurance without a referral and I was told to get a referral.
The problem I am hitting with Rheumatology is that although my ANA has increased to 1:320 Homogenous in the past, nothing shows up positive other than my TPO antibodies. I have had Graves Disease since 2008 and although now I have been through an RAI treatment in 2010 and now have been hypo since 2016 and stable/ optimal for almost 1yr and a half on Armour, I still have high antibodies and the Rheumatologists believe my 1st neg to 1:320 Homogenous ANA is due to my TPO, which I don't agree with, but again as you mentioned another specialist stating their opinion as nothing else has yet come up positive. I am now back down to a 1:80 titre Speckled and I think this may have been due to my recent diet changes. I wont be giving up though, thank you for your help and best of luck to you as well.
Yeah. Maybe shoot for a second opinion on the rheumatology front. Persistent positive ANA with other rogue symptoms would worry me as well. Thats what I would do. The key to getting solid referrals is a good PCP who knows good subspecialists.
Where I am, the hospital also has its own insurance so I can’t really go to other hospitals without a referral. It’s a crap shoot. Look up providers on your own and when you ask for a referral make sure they refer you to who you want. PPOs have a tendency to refer you to someone in their backscratching circle. You want someone who knows their stuff not someone who acts in returning favors to your providers.
Thank you, the second Rheumy laughed at my argument and agreed with the first. I will try again and the future.
That truly sucks that they have set up the system that way, I'm sorry. I saw your profile and that you are physician with Lupus. Have you been referred to a good physician or Rheumatologist in your area? And I agree about your statement, I hope to see one soon.
Third times the charm. 😃 I really hope you find someone who will champion for you. It’s so frustrating.
I actually pushed to see Michelle Petri at Hopkins for lupus. She helped out a lot and gave me a formal lupus diagnosis. Guess what....my ANA was never positive and she still gave me the diagnosis. Forced Plaquenil down my throat for the better. Ran all pertinent labs and my ANA was finally positive at Hopkins.
I sometimes think labs are lying/sloppy standards with the results. What’s up Elizabeth Holmes on repeat? I just see some teenage kid getting paid minimum wage to put false results in an excel sheet so he can make it to a party that night. Paranoia much!? 🤣 Cost me about $300 for outside referral and workup but in the end, I thought it was worth it.
Wow, that’s amazing and so worth it! Did you have alot of the symptoms for diagnostic criteria?
It makes we wonder as well, sometimes even more as to why certain criteria are considered for diagnosis when not everyone has those symptoms. I’m so glad you were able to get a proper diagnosis and that that doctor was open to taking your case and help you.
Petri actually devised the SLICC criteria. I had a lot of stuff. Photosensitivity, malar, pericarditis, arrhythmia, fever, lymph nodes (negative PET scan), hair loss, rashes, livedo, extreme fatigue, joint swelling/stiffness, peripheral neuropathy/facial droop (not stroke), chronic lymphopenia, transient thrombocytopenia, low c3/c4, lupus anticoagulant positive. Everything save renal involvement (even though urine shows inflammation) and a positive ANA was on my list of documented symptoms. My home rheumatologist reluctantly accepted the diagnosis and still pushes UCTD because she thinks I need a positive dsDNA but it’s hard to argue with a lupus juggernaut like Petri. Finding someone with experience is key.
Well that's wonderful news, I'm glad she put all the pieces together for you and that your primary wont be able to go against her diagnosis! Are you feeling alot better now?
I'm sorry, and am finding more people saying there is often more than one autoimmune issue involved. I mean it makes sense, we have one body and if our immune system is messed up it's likely for other things to be attacked. Do you have a high polyclonal gammopathy as well? What gives the impression that it may be Crohns? I hope you find some more answers soon.
Abdominal pain. Bloody stool. My mom has crohns. I actually have low normal IgG. I’m the opposite. I don’t make antibodies all too well. There’s something new everyday.
I don't have much experience with Crohns other than a couple friends of mine have it. I thought I would ask as perhaps my experience would helpful but after you shared symptoms I found my would be of much help to you, especially since you have experience and knowledge of your mom going through Crohns. It seems that the Gastroenterologist I saw was more interested in Crohns and Ulcerative Colitis, so I'm sure you will have no problem getting into see a doctor as well as the proper procedure given your symptoms and mom's history.
I also find what you shared with me to be very inspiring, and it makes me want to go so see someone like Michelle Petri, but am afraid that I will not walk away with much more information than I have now as what I thought would count towards the criteria of Lupus wouldn't yet count unless it were to progress worse. For example, I have had low platelets for a year and something but none of my results are below 100,000 as of yet and have been told by a hematologist that I should consider ITP as they aren't normal, but are normal for someone with autoimmune issues so nothing can be done as of yet. I felt the need to explain. Thank you for you time and I hope that you will find the right doctor to help you with your stomach issues.
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