[loislane]

Low lambda FLC level, high kappa / lambda ratio?

by loislane on Wed Aug 12, 2015 8:49 pm

My daughter has not felt well in two years. She has had a myriad of symptoms – most seem to involve the endocrine system (amenorrhea, weight gain, exhaustion, etc.) However, her various doctors (a pediatrician, two endocrinologists, an OBGYN) haven't been able to figure out what the actual problem is.

On a whim, her endocrinologist ordered a blood test to measure my daughter's light chains. (The doctor was looking for MGUS.) Her test came back with the following results, which con­fused the endocrinologist. He said he didn't know what the results meant. He said with light chains, what you want to avoid is a high number of chains, while one of her light chains (lambda) is actually below the range.

Kappa free light chains - 7.10 (3.30-19.40)
Lambda free light chains - 3.10 (5.71-26.30) LOW
Kappa/lambda ratio 2.29 (0.26-1.65) HIGH

What does it mean to have low lambda chains with a high kappa/lambda ratio?

I showed one of her other doctors, who said, "I think it has something to do with protein me­tab­olism, but I don't know for sure."

Clearly, this sort of test is not one many doctors are familiar with. I hoped some of you experts on this board would have an idea.

The only other thing off on the results was her immunoglobulin A, which was low at 71 (77-278 range)

Ideas? Please?

[Multibilly]

Re: Low lambda FLC level, high kappa / lambda ratio?

by Multibilly on Wed Aug 12, 2015 9:45 pm

Hi Loislane,

See the table in this link for helping to understand what this "might" mean:

http://www.thebindingsite.com/interpretation-of-freelite-results

Based on the table in the above link, it could "possibly" suggest a monoclonal gammopathy with bone marrow suppression involvement. But I'm not a doc, and I wouldn't dream of venturing a diagnosis off just a table like this.

Did they run what is known as immunofixation test (IFE)? This would tell you if any of the key proteins in the blood serum were monoclonal or not.

Given that your daughter's docs don't know how to interpret these specific results, I would suggest seeking out a hematologist that specializes in multiple myeloma. He/she would know which ad­di­tional tests to run under the circumstances.

If you let us know which city your daughter lives, folks on this forum can make some suggestions on where to find this kind of specialist.

[loislane]

Re: Low lambda FLC level, high kappa / lambda ratio?

by loislane on Thu Aug 13, 2015 1:57 am

Thanks for your quick response. You are right. I should see a specialist. The other doctors seemed so unconcerned with the test, I assumed it was nothing. However, I can see that I was perhaps just sticking my head in the sand.

I live in Utah, about 50 miles south of Salt Lake City.

I'd appreciate any suggestions. My daughter is 17.

Lois

[Rhonda]

Re: Low lambda FLC level, high kappa / lambda ratio?

by Rhonda on Thu Aug 13, 2015 6:37 am

I have a friend who speaks very highly of Huntsman and the specialist she sees there. You may want to contact them.

I wish your daughter the best.
Rhonda

[TerryH]

Re: Low lambda FLC level, high kappa / lambda ratio?

by TerryH on Thu Aug 13, 2015 6:59 am

I also was thinking of recommending Huntsman. They have a dedicated multiple myeloma program there. It's one of the center's listed in the Beacon's list of myeloma treatment centers:

https://myelomabeacon.org/resources/treatment-centers/

Good luck!

[JenB]

Re: Low lambda FLC level, high kappa / lambda ratio?

by JenB on Sun Dec 06, 2015 1:28 pm

Hi there,

I am new to this site. I wondered if you ever figured out what was going on with your daughter? I am in a similar situation.

Will be 40 this week and haven't felt good for about a year, maybe more, because I was pregnant and didn't feel great, but assumed it was pregnancy. I have been to many doctors and they all said it was maybe fibromyalgia and anxiety. My PCP finally ordered an SPEP and a UPEP. They both looked normal, except the UPEP came back with high creatinine – 413, and high end was 300. He didn't know what to make of it, so I asked another doctor to redo it, this time a different lab.

The UPEP came back normal except 22 for total protein and a trace of albumin and smear of globulins. So, she did a 24-hour UPEP for which I haven't got results, but also did a free light chain assay and SPEP. SPEP was normal, FLC was not and showed an elevated kappa / lambda ratio of 5.55 (normal is 0.26-1.65), Kappa was 1.22 (normal 0.33-1.94 mg/dL) and lambda was low at 0.22 (normal 0.57-2.63 mg/dL).

Can someone help me with this? What does this look like?

Everything I come up with seems to point to amyloidosis, especially with my symptoms.

Thank you, and I hope your daughter is well.

[Multibilly]

Re: Low lambda FLC level, high kappa / lambda ratio?

by Multibilly on Sun Dec 06, 2015 3:44 pm

Hi Jen,

Welcome to the forum.

The elevated free light chain (FLC) ratio probably deserves some more investigation.

A high FLC ratio that is caused by a low lambda with a normal kappa level can possibly suggest a monoclonal gammopathy with bone marrow suppression. Note that if it is a monoclonal gammopathy, there are other tests that would be required to figure out just what is going on (MGUS, amyloidosis, etc.). Most of these tests involve a bone marrow biopsy to start with. But be clear that other things could potentially be mucking with your FLCs.

Amyloidosis may be revealed by a Congo red stain test as part of a bone marrow biopsy, but not necessarily. So, if your doc suspected amyloidosis and you have a high creatinine level, they may biopsy your kidney or a fat pad to determine if amyloidosis was in play.

But what symptoms do you have that make you think it might be amyloidosis is the first place?

Did they also run a serum immunofixation test?

In any case, if there is a suspicion of a monoclonal gammopathy, I might suggest being evaluated by a top multiple myeloma specialist. If you let us know what city you are in, folks on this forum can recommend some specialists in your area.

[JenB]

Re: Low lambda FLC level, high kappa / lambda ratio?

by JenB on Mon Dec 07, 2015 7:11 am

Thank you, Multibilly for responding.

I had a bone marrow biopsy and at the time they weren't specifically looking for multiple myeloma or amyloidosis. My hem/onc called and said it looked good, he was just waiting on the chromosomal testing to come back, but didn't anticipate any problems.

I mentioned amyloidosis and asked if they used the Congo red stain and he said no.

I have a 9 year old and a 18 month old. After the 18 month old was born I started with a multitude of symptoms and got bounced around to doctors. Here's the list of symptoms:

bladder pain
bubbles in urine
neck pain right sided with bony overgrowth at c5-c6 with possible nerve impingement
carpal tunnel pain
all over joint pain
backpain
shortness of breath upon exertion
fatigue
insomnia
headaches
skull pain
swollen submandibular gland...removed bengin nodule
blood shot eyes
blurry vision
anxiety
chest pain
hyper inflated legs on xray
dry mouth
transient high calcium that resolved (10.7 and 10.5,then back to the 9s)
pituitary mircoadenoma supposedly benign
prolactin level under 2, while breastfeeding
highb12 level1291
parathesias
low positive ANA titer
high end positive fibrinogen
tan skin without being in the sun
low ferritin, low iron, high tibc, low tsat
low IgA 62

My creatinine had been normal, but creatinine in urine was high.

I think they did an IFE on my urine, but not on the blood.

When you say other things could be mucking up the FLC ratio, do you have any suggestions of what can do that? Would the bone marrow biopsy show bone marrow suppression even without the red Congo stain?

I live in Maine.

Thanks so much for your help.

[Multibilly]

Re: Low lambda FLC level, high kappa / lambda ratio?

by Multibilly on Mon Dec 07, 2015 8:40 am

Hi Jen,

Again, I'm not a doc. But one can see the effects of bone marrow suppression by looking at specific cellular levels on a CBC test. However, it's cause would likely need to be evaluated via a BMB. See:

http://www.cancer.ca/en/cancer-information/diagnosis-and-treatment/managing-side-effects/bone-marrow-suppression/?region=on

I'm reluctant to even try to guess what might be going on given all of your symptoms, but I could see why your doc might think it was an autoimmune disorder such as fibromyalgia.

I might therefore suggest a road trip to be evaluated at a large research institution with many specialists on their staff, such as Dana Farber in Boston or Memorial Sloan Kettering in NY.

See this link for where you can find institutions that have multiple myeloma specialists (and many other specialists, including rheumatologists) on their staff.

https://myelomabeacon.org/resources/treatment-centers/

Wish I could be of more help.

[JenB]

Re: Low lambda FLC level, high kappa / lambda ratio?

by JenB on Mon Dec 07, 2015 8:52 am

Thanks for the reply. Yes, I am planning on talking to my doctor today and see about Dana Farber.

I have had normal CBCs. A couple times my white count was a little low, 3.8,then 3.9, but has since been in the normal range.

I agree, I can understand the fibromyalgia suggestion as to explain the symptoms, but now with the FLC being off, along with the symptoms. I was assuming the shortness of breath and fatigue was the iron deficiency, but now concerned that it's my heart. I did just have a normal EKG, but want them to do an echo. Also, had a normal lumbar MRI and normal CT abdominal / pelvic ... just cysts in right kidney, liver and right ovary.

It seems that everything I read about this shows that once you have symptoms, you have advanced damage, which is scary.

Thanks for your input.