I am a 35 year old female, otherwise healthy. After undergoing a miscarriage, I had night sweats and a deep itch that lead me to the dermatologist. Upon blood work, all PEP values were normal, but an ill defined band in the gamma globulin was detected. Further, it states IgG kappa. All other blood work is normal. A small amount of WBC was in urine (not that I am surprised).
Having gone back to my teaching unit resident I was told they weren't worried. I had to push a bit, but I now have the ionized calcium, C-reactive protein and 24 hour urine test.
I have a resident who was totally unprepared to discuss. Her supervisor indicated "they aren't worried about it". She said they would repeat value for PEP and immunofixation in July. I was advised myeloma will show in the urine testing in the meantime. Essentially, I was told that by July, if the value is the same or it goes up, they would be sending me to a hematologist with a definitive diagnosis.
I don't have a referral to a hematologist and I don't have any further tests aside from what I mentioned.
Is there something further I should be doing? I am thinking about a second child, but the limited studies I have read indicate there is not a lot of data on pregnancy. I am holding off for a bit now.
Any recommendations would be appreciated. Again - not at the diagnosis place yet - just trying to ensure I am being an advocate for my health.
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Re: Have ill-defined gamma globulin band - what to do?
First of all, I am so sorry about your miscarriage. I know that can be a very painful loss. I don't personally have an answer for your question, but I am sure someone will jump in here soon. But I didn't want you to feel your question was being ignored. Other than not knowing what the answer is, I always advise to be agressive when advocating for yourself or someone you care about. I wish you the very best.
Re: Have ill-defined gamma globulin band - what to do?
Sorry to hear about your miscarriage. Our family went through a couple of these, so I know it can be quite traumatic.
I think if there was a suspicion for some stage of multiple myeloma, I would be pushing for all those tests listed under the "Laboratory Tests" in the article below. If anything, this will give you a baseline and will give you a pretty conclusive idea about what may be going on, if it is some stage of multiple myeloma. multiple myeloma doesn't always show up in the urine (it doesn't in my case). It also doesn't always show up in a serum PEP (this is the case for about 20% of patients).
http://myeloma.org/pdfs/IMF-U-TestResults-2011_f1web.pdf
Does your insurance require you to have a referral to see a hematologist? If not, then I would suggest just going directly to a hematologist that specializes in multiple myeloma and bypassing the GPs.
I think if there was a suspicion for some stage of multiple myeloma, I would be pushing for all those tests listed under the "Laboratory Tests" in the article below. If anything, this will give you a baseline and will give you a pretty conclusive idea about what may be going on, if it is some stage of multiple myeloma. multiple myeloma doesn't always show up in the urine (it doesn't in my case). It also doesn't always show up in a serum PEP (this is the case for about 20% of patients).
http://myeloma.org/pdfs/IMF-U-TestResults-2011_f1web.pdf
Does your insurance require you to have a referral to see a hematologist? If not, then I would suggest just going directly to a hematologist that specializes in multiple myeloma and bypassing the GPs.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Have ill-defined gamma globulin band - what to do?
HI klg35,
Good to see you're being proactive about trying to make sense of your lab results.
Can you share any more details about your lab results, particularly your immunoglobulin (electrophoresis) results?
I will say that two things are making me think you're probably not looking at a case of some kind of monoclonal gammopathy, such as MGUS or smoldering myeloma. One is the fact that you were told that you have an "ill-defined band" in the gamma immunoglobulin range. The other is your initial symptoms, particularly the itching.
I suspect that what you're seeing in these results may be the signs of some kind of autoimmune reaction or disorder.
But knowing details about your lab results might help figure out if that's really what's going on.
I also think you should be given more feedback from your physician about what he or she thinks is going on based on your symptoms and lab results.
Good to see you're being proactive about trying to make sense of your lab results.
Can you share any more details about your lab results, particularly your immunoglobulin (electrophoresis) results?
I will say that two things are making me think you're probably not looking at a case of some kind of monoclonal gammopathy, such as MGUS or smoldering myeloma. One is the fact that you were told that you have an "ill-defined band" in the gamma immunoglobulin range. The other is your initial symptoms, particularly the itching.
I suspect that what you're seeing in these results may be the signs of some kind of autoimmune reaction or disorder.
But knowing details about your lab results might help figure out if that's really what's going on.
I also think you should be given more feedback from your physician about what he or she thinks is going on based on your symptoms and lab results.
Re: Have ill-defined gamma globulin band - what to do?
I'm sorry to hear about your miscarriage as well. I'm a 30 year old female from the UK and recently went through a similar experience myself, so thought I would reply. After a year of trying to get pregnant I finally did, only to miscarry at 8 weeks in September.
I requested an autoimmune screen because I have had very mild psoriasis since I was in my teens and had heard that autoimmune conditions can sometimes contribute to miscarriage, so wanted to rule this out before starting IVF (turns out that I do have a positive ANA test - only 1:80, which is low).
Anyway, a small paraprotein showed up in this autoimmune screen, so I booked myself in to see a haematologist. After further testing I have been reassured that everything looks fine in terms of full blood count, skeletal survey, normal SFLC ratio etc. I've been diagnosed with low-risk MGUS.
I asked my haematologist about fertility/pregnancy and IVF. He did not express any concerns and said it should be OK to proceed. He did not feel that my MGUS was having an impact on my fertility or that pregnancy would advance my MGUS. I asked if it was possible that the paraprotein may rise during pregnancy and he said that he did not know, but that it was a possibility, as many proteins go up in pregnancy generally. I got the impression that he thought that if it did go up during pregnancy (along with the other proteins) then it would likely go back down again after pregnancy.
The IVF clinic queried the paraprotein before they would treat me and the haematologist wrote to them to confirm that, in his opinion from a haematological point of view, there is no contradiction to IVF/ICSI treatment in my case. Unfortunately, the IVF did not work on this occasion (think the drug dose was too high for me), but we are going to have another go soon.
I've posted on a similar thread elsewhere on this topic: https://myelomabeacon.org/forum/mgus-and-pregnancy-t2832.html
I'm no expert and have not seen your lab results, but it seems that you may either have MGUS or some sort of inflammation / autoimmune reaction (as Cheryl G mentioned below). I've read that small, ill-defined bands can sometimes be transient and may disappear when followed over time. It seems reasonable to wait until July for further testing, especially as you have sought medical advice on the matter, but then again I'm no medical professional.
For me there was about at 3 month wait on the NHS between when my small band was first recognised and further blood tests/skeletal survey which confirmed low-risk MGUS, so I don't think they saw me as an urgent case.
As an aside, I had night sweats after my miscarriage, I've read that this can relate to the hormones settling down ...
Wishing you all the best!
I requested an autoimmune screen because I have had very mild psoriasis since I was in my teens and had heard that autoimmune conditions can sometimes contribute to miscarriage, so wanted to rule this out before starting IVF (turns out that I do have a positive ANA test - only 1:80, which is low).
Anyway, a small paraprotein showed up in this autoimmune screen, so I booked myself in to see a haematologist. After further testing I have been reassured that everything looks fine in terms of full blood count, skeletal survey, normal SFLC ratio etc. I've been diagnosed with low-risk MGUS.
I asked my haematologist about fertility/pregnancy and IVF. He did not express any concerns and said it should be OK to proceed. He did not feel that my MGUS was having an impact on my fertility or that pregnancy would advance my MGUS. I asked if it was possible that the paraprotein may rise during pregnancy and he said that he did not know, but that it was a possibility, as many proteins go up in pregnancy generally. I got the impression that he thought that if it did go up during pregnancy (along with the other proteins) then it would likely go back down again after pregnancy.
The IVF clinic queried the paraprotein before they would treat me and the haematologist wrote to them to confirm that, in his opinion from a haematological point of view, there is no contradiction to IVF/ICSI treatment in my case. Unfortunately, the IVF did not work on this occasion (think the drug dose was too high for me), but we are going to have another go soon.
I've posted on a similar thread elsewhere on this topic: https://myelomabeacon.org/forum/mgus-and-pregnancy-t2832.html
I'm no expert and have not seen your lab results, but it seems that you may either have MGUS or some sort of inflammation / autoimmune reaction (as Cheryl G mentioned below). I've read that small, ill-defined bands can sometimes be transient and may disappear when followed over time. It seems reasonable to wait until July for further testing, especially as you have sought medical advice on the matter, but then again I'm no medical professional.
For me there was about at 3 month wait on the NHS between when my small band was first recognised and further blood tests/skeletal survey which confirmed low-risk MGUS, so I don't think they saw me as an urgent case.
As an aside, I had night sweats after my miscarriage, I've read that this can relate to the hormones settling down ...
Wishing you all the best!
Re: Have ill-defined gamma globulin band - what to do?
Thank you for your responses, and your understanding. I was floored to see how responsive people are quickly - what a great community!
I am based out of Canada, so would require a referral to a hematologist. Cindy, I believe you asked for my values. I have everything but the C-reactive protein and calcium (doing today), plus the urine test.
My PEPS:
Total protein: 70 (57-82) g/l (all are g/l)
Albumin: 49 (35-50)
Alpha 1: 1 (1-3)
Alpha 2: 6 (5-10)
Beta: 6 (5-12)
Gamma: 8 (5-14)
Notes: An ill defined band in the gamma globulin region is detected.
Immunofixation - Serum
A faint ill-defined band of IgG, Kappa is detected (please submit another specimen for immunofixation in 6-12 months to confirm observations.
Further investigation with quantification of immunoglobulins is suggested.
(not sure what this means).
Clinically, I have awful back issues. I really attribute this to my pregnancy and an epidural. Weekly, it's something (nearly throwing my back out, or feeling of electricity shooting through it). I see a chiropractor, and massage. I have a toddler, so you can just imagine ...
I fully believe the night sweats and rash were hormones. I now get these random patches of itch, to the point where I break my skin. It wasn't all over, as bad as it used to be. I also had chronic placental abruption through my first pregnancy.
I am based out of Canada, so would require a referral to a hematologist. Cindy, I believe you asked for my values. I have everything but the C-reactive protein and calcium (doing today), plus the urine test.
My PEPS:
Total protein: 70 (57-82) g/l (all are g/l)
Albumin: 49 (35-50)
Alpha 1: 1 (1-3)
Alpha 2: 6 (5-10)
Beta: 6 (5-12)
Gamma: 8 (5-14)
Notes: An ill defined band in the gamma globulin region is detected.
Immunofixation - Serum
A faint ill-defined band of IgG, Kappa is detected (please submit another specimen for immunofixation in 6-12 months to confirm observations.
Further investigation with quantification of immunoglobulins is suggested.
(not sure what this means).
Clinically, I have awful back issues. I really attribute this to my pregnancy and an epidural. Weekly, it's something (nearly throwing my back out, or feeling of electricity shooting through it). I see a chiropractor, and massage. I have a toddler, so you can just imagine ...
I fully believe the night sweats and rash were hormones. I now get these random patches of itch, to the point where I break my skin. It wasn't all over, as bad as it used to be. I also had chronic placental abruption through my first pregnancy.
Re: Have ill-defined gamma globulin band - what to do?
KLG,
I think Cheryl makes some really good points to consider and is probably right, especially based on your serum PEP results.
If you look at your serum PEP, you will likely find a sentence in there somewhere that will take about the level of paraprotein, M-Spike, monoclonal protein, etc (different labs call it different things). This is is usually a separate notation that appears on the serum PEP. Do you see that anywhere? Somebody without a monoclonal gammopathy will usually have a zero value for this entry.
Or, is this where they simply talk about the "ill-defined band"?
I think Cheryl makes some really good points to consider and is probably right, especially based on your serum PEP results.
If you look at your serum PEP, you will likely find a sentence in there somewhere that will take about the level of paraprotein, M-Spike, monoclonal protein, etc (different labs call it different things). This is is usually a separate notation that appears on the serum PEP. Do you see that anywhere? Somebody without a monoclonal gammopathy will usually have a zero value for this entry.
Or, is this where they simply talk about the "ill-defined band"?
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Have ill-defined gamma globulin band - what to do?
Yes, all that is there is this mention of the ill defined band. Nothing about M spike, etc. as you mentioned.
Re: Have ill-defined gamma globulin band - what to do?
OK, that makes sense.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Have ill-defined gamma globulin band - what to do?
Someone correct me if I'm wrong, but does that means that the band is too small to measure?
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