I was diagnosed with Monoclonal gammopathy of unknown significance (MGUS), 4, years ago and apart from a couple of blips have been fairly stable. My paraprotein level has remained at 2. However I noticed my Free Lambda light chain has been rising, in May it was 116.6 (should be 10.3 - 24.4) then in July 123.4, with a kappa lambda ratio of 0.15, (normal is 0.99 - 1.8) I wondered if anyone had this? I watched a YouTube video that talked about light chains and suggested that a rising Lambda free chain and an abnormal kappa / lambda ratio could be a sign of Amyloidosis. Iām due a blood tests every next next month and will raise this with my haematologist if it goes up again. Has anyone experienced this? My Kappa free light chain is normal.
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Hello @Hussyhemlock
Thank you for your post.
We are sorry to hear about your diagnosis of Monoclonal gammopathy of unknown significance (MGUS).
We are unable to comment on specific blood tests however, we would advise with any health worry or concern to contact your team/ GP who monitor your Monoclonal gammopathy of unknown significance (MGUS) for you and tell them about how you are feeling. It might be a good idea to tell them you are worried about Amyloidosis, so that this could be something they can then rule in or out as it may not be at the forefront of their mind.
It sounds reassuring that you have an appt next month and can raise this issue, but if it is playing on your mind, perhaps you have a clinical nurse specialist you can contact in the meantime?
We do have a page on What is MGUS | Blood Cancer UK which has a section that talks about types of Monoclonal gammopathy of unknown significance (MGUS) and may be useful for when you speak with your team.
For further information about Monoclonal gammopathy of unknown significance (Monoclonal gammopathy of unknown significance (MGUS)) our colleagues at Myeloma UK have a useful info sheet that may be helpful to read over MGUS Infosheet.
Take care & warm wishes,
Emma (support services nurse)
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Thank you, I feel I can wait until next month, this forum is always so reassuring.
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Hi
I just have a quick question regarding immunoglobulin levels in comparison to paraprotein, it may be silly - apologies if so, but just trying to understand from some other things Iāve read. is everyoneās pararotein level the entire amount of that particular involved immunoglobulin or part of it?
any help would be greatly appreciated, kind regards
Hi @Pollyp777, please donāt apologise for asking - itās what we are here for!
Iām tagging in the marvellous @BloodCancerUK_Nurses to help answer this, as Iām certainly no medical expert.
Take care,
Ceri - Blood Cancer UK Support Services
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Thank you for that, much appreciated 
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Hello @Pollyp777
I was once told āthereās no such thing as a silly question, itās just a question you think you should know the answer tooā. This really stuck with me and so now I never feel worried to ask questions that I once would. Monoclonal gammopathy of unknown significance (MGUS) is very confusing and complex (and even GPs and Haematology nurses struggle to understand it too!), so hopefully I can answer in a way that makes sense.
Plasma cells make five types of Immunoglobulin, but the three associated with M GUS are IgG, IgA and IgM. When a genetic mutation happens, the plasma cells make more of one type; this is called an M-protein or Monoclonal Protein or M-spike or paraprotein (they all mean the same thing). Each M GUS patient will have a ātypeā; for example you may be told you have IgG M GUS.
So to answer your question: Yes, when you get blood results the paraprotein reading is the total count of that specific (abnormal) paraprotein that you have (either IgG or IgA or IgM).
I hope I havenāt confused you. If it would be helpful to talk this through, then do call our support line.
Best wishes, Heidi.
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Thanks for that, I understand most of it and I currently have two types of Monoclonal gammopathy of unknown significance (MGUS) igm lambda and kappa light chain Monoclonal gammopathy of unknown significance (MGUS). Looking at others results Iāve seen the igm igg igm levels and then the known monoclonal band reading, but others seem to show a higher total reading of the involved chain than the paraprotein figure. Mine is exactly the same so Iām wondering if that is different as in, can you have any healthy remaining for eg igm types so only a portion have turned dysfunctional or are all Monoclonal gammopathy of unknown significance (MGUS) patients completely deficient in the immunoglobulin thatās gone rogue?! Hope that makes sense
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Iāve had my last set of blood test results, there has been a very slight improvement, unfortunately I waited in all day for a phone call from my haematologist but he just sent a message saying they were satisfied with my blood test and just to have my next one. Because of the slight improvement Iām not too worried this time and will watch for the next one. Perhaps some kind of inflammation from the last few months? I know my haematology team are very busy I donāt blame them for not ringing but I think they donāt always understand how scary this is, especially when you have changes in your results. Fingers crossed for next time.
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Glad thereās been some improvement for you but totally agree they donāt understand the worry, I guess as theyāre working in this area all the time. Iām disgusted with my treatment via gp Iām awaiting seeing haematology, really think you deserve a full explanation when diagnosed, Iāve found most info from researching. Haematology have said they didnāt want to see anyone until levels higher which could potentially be treatment stage, but Iāve pushed for appmt which hopefully get after my next results in two weeks esp as have two types going on now.
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Yes definitely need an appointment with a haematologist, you sound like you have a complex type and need to have questions answered. Unfortunately GPās arenāt haematologists and have restricted knowledge. I hope you get the information you need, for me the more knowledge I have the better I cope. I remember when I first got diagnosed my anxiety was through the roof (& I wouldnāt say Iām an anxious person), luckily my haematologist was very reassuring. I watch my numbers so that I can be prepared for any changes. Good luck with your appointment and let us now how you get on, Liz
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Hello @Pollyp777
It does make sense what youāre asking. I am not sure if I can fully answer your question Iām afraid, but I will try.
Basically, Yes, you can have healthy immunoglobulins and some that donāt āfunctionā.
Blood results when printed out can be very confusing and it will depend on each lab/Hospital as to how they lay out the readings, how each test is is broken down and also what the patient is able to see. Haematologists can sometimes get more results and information on your blood than you would get via an NHS app, for example cell sizes, etc. This is because they understand the context and relevance, not because theyāre hiding anything from patients.
It is probably best you ask your Haematologist what your readings are, what the breakdown is, and what this means for your diagnosis or further test frequency.
I did have another thought for your results, which was around IgG subtypes and whether these were listed but not clear. Whilst there are 5 types of Immunoglobulin (IgG, IgA, IgM, IgE and IgD) there are some sub-types within these. In humans, IgA and IgG both have further subtypes - IgA1 and IgA2, and then IgG1, IgG2, IgG3 and IgG4.
I wonder if this is part of what you can see.
If you donāt already, you may find it helpful to download and use the Monoclonal gammopathy of unknown significance (MGUS) Diary from Myeloma UK. There is a handy section to write down all of your blood results and symptoms (if you have any), as well as any thoughts or questions to ask: MGUS-diary/MyelomaUK.
Hopefully you can get some better answers at your next appointment.
Again, youād be welcome to call our support line to talk any of this through: 0808 2080 888 as it may be easier to explain over the phone.
Take care, Heidi.
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Thank you @Hussyhemlock Yes I agree Iām someone better with knowledge than not, hence Iāve struggled with this as never had it explained fully. My numbers arenāt high but it was found as I was so poorly for months a couple of years ago. I have igm lambda paraprotein 1.7 but my total levels are the same so I donāt believe I have any good igm at all. Now I have high kappa and ratio show on my last blood test. Iād been monitored 3 monthly but then weirdly after this being found they wanted to wait 6 months but Iāve pushed for 3 months as I have symptoms too but the gp thinks could be due to perimenopause? Iām on antibiotics most of winter with infection after infection Iām guessing due to my igm being non existent now, not that gp has mentioned it. I also have fibromyalgia but itās been mostly manageable all this time but now Iām getting pain like when I was first diagnosed and the worst itās been in 25 years however docs donāt seem to think worth investigating more. They seem to think that I over worry as my husband died quickly from cancer nearly 5 years ago and with the stress of life and running a business but i know itās not that, I know something isnāt right within myself. Iām 46 and feel like Iām 20 years older physically half the time, Iāve had to make many changes to my life and my lifestyle, to try to be as well as I can, but guess I will just have to continue to wait, hoping these blood tests might at least get me some answers as to where things are going. Defo feel like you get to a certain age as a woman and the doctors are very quick to it all down to menopause! Even though all blood tests suggest Iām not in menopause.
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Thank you Heidi, itās the immunoelectrophoresis which show iga igg igm levels and range and my immunocixation shows 1.7 igm lambda
the immunoelectrophoresis for igm 1.68
Amd since cost one now only shows igg iga and thsn igm as unreliable result no amount. My new gp is less than useless I wonāt see her if can help it.
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Hi @Pollyp777, how are you doing today? I can hear how understandably frustrated youāre feeling, so I hope the below is helpful (and hopefuly not just reiterating what you already know!).
You mentioned feeling like youāre not being taken seriously, especially with symptoms being dismissed as perimenopause when your blood tests donāt support that. It sounds like youāve already been doing some self-advocacy by pushing for the 3-monthly monitoring instead of 6-monthly, which is good. Please know that youāre absolutely within your rights to request a referral to see a haematologist, especially given that you have two types of Monoclonal gammopathy of unknown significance (Monoclonal gammopathy of unknown significance (MGUS)) and ongoing symptoms.
We have a helpful article about advocating for yourself that you might find useful, and thereās also a guide that Myeloma UK has produced specifically for GPs about MGUS - section 9 (page 18) covers when referral to a haematologist should be considered. I know youāre not keen to see your GP again, but it might be worth requesting a hard copy/printing it and taking it along with you if you do?
I also noticed that the link Emma kindly shared earlier in the thread doesnāt seem to be working anymore, so hereās an updated link to Myeloma UKās MGUS infosheet.
As mentioned, if you want to talk any of this through - the referral request, the questions to ask, or just how youāre feeling about it all - our support line nurses are brilliant and would be happy to help. Theyāre on 0808 2080 888 or support@bloodcancer.org.uk.
Take care,
Ceri - Blood Cancer UK Support Services
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Hi Pollyp777,
How are you doing? I am 43 with IgA light chain kappah Monoclonal gammopathy of unknown significance (MGUS). My light chains kappah suddenly increased within 6 months from 60 to a nearly a hundred. I am waiting for the Hematologist to contact me. They sent me a letter only 2 days ago before paraprotein and light chains results came back. And because of this sharp jump in light chains I worry that I progressed into a Myeloma or may progress in next months etc. I wonder how are your results?