I'm a 39-year-old female and have had rib pain and hip pain for over a year. But, recently, last fall I started noticing with any labs drawn my ANION GAP and ALB/GLOB levels were low. And reading I found that this was a rare level to test low, except in certain cases of multiple myelooma. This is where I first learned about multiple myeloma. So I started doing research and found that I had a lot of the symptoms, etc.
This anion gap etc has been low at 5-6 for a year now, tested low on about 6 different occasions. I have over the past 2-3 months lost 15 pounds out of nowhere, and also the past 2 weeks or so I have had this sudden insane back pain. Pelvic pain too.
I have my labs, and from what I have read all of my "lows" point to multiple myeloma. But of course I am a self advocating amateur here, so could use some help – tips, pointers where to turn next – as my doctor is clueless and is basically just referring me to a hem/onc..
Please help with any info and insights as I am pretty worried and scared. Thank you.
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Re: Scared - symptoms for over a year, abnormal labs
Hi SC,
Sorry to hear about the pain you've been experiencing.
There are three tests that will help determine rather conclusively whether or not you have multiple myeloma or a related disease such as monoclonal gammopathy of undetermined significance (MGUS)
1. Serum immunofixation electrophoresis (IFE or SIFE)
2. Serum protein electrophoresis (SPEP)
3. Serum free light chain assay (sFLC)
For the first test (IFE), you want to see if it reports that a monoclonal protein is present. This would be a sign of MGUS (a non-malignant condition) or myeloma. The test doesn't report the level of the monoclonal protein, just whether or not it's present.
The second test (SPEP), which it seems you may have had, indicates levels of different proteins, and also may report an estimate of the "M-spike", "monoclonal protein", "paraprotein", or "abnormal protein band". If it does report one of those items, then it will give the level in either g/dL, g/L, or mg/dL. If it doesn't say an M-spike, monoclonal protein, paraprotein, or abnormal protein is present, then that's a good sign. (Look in the "interpretation" section of the test results.) But you still want to get the other two tests done.
The third test (sFLC) will report your kappa and lambda free light chain levels and their ratio. If either the kappa or lambda is above normal to the extent that the ratio of the two, usually reported as the kappa/lambda ratio, is out of the normal range, then this could indicate the presence of a "light-chain" monoclonal gammopathy / plasma cell disorder.
If you have had any of these tests done, why don't you post the results, including units and "normal" / "reference" ranges, and we'll help you understand them.
Signs of myeloma in blood tests include low hemoglobin levels, elevated calcium levels, and symptoms of kidney damage, such as elevated creatinine levels. But the first three tests I mentioned earlier are key.
Good luck!
Sorry to hear about the pain you've been experiencing.
There are three tests that will help determine rather conclusively whether or not you have multiple myeloma or a related disease such as monoclonal gammopathy of undetermined significance (MGUS)
1. Serum immunofixation electrophoresis (IFE or SIFE)
2. Serum protein electrophoresis (SPEP)
3. Serum free light chain assay (sFLC)
For the first test (IFE), you want to see if it reports that a monoclonal protein is present. This would be a sign of MGUS (a non-malignant condition) or myeloma. The test doesn't report the level of the monoclonal protein, just whether or not it's present.
The second test (SPEP), which it seems you may have had, indicates levels of different proteins, and also may report an estimate of the "M-spike", "monoclonal protein", "paraprotein", or "abnormal protein band". If it does report one of those items, then it will give the level in either g/dL, g/L, or mg/dL. If it doesn't say an M-spike, monoclonal protein, paraprotein, or abnormal protein is present, then that's a good sign. (Look in the "interpretation" section of the test results.) But you still want to get the other two tests done.
The third test (sFLC) will report your kappa and lambda free light chain levels and their ratio. If either the kappa or lambda is above normal to the extent that the ratio of the two, usually reported as the kappa/lambda ratio, is out of the normal range, then this could indicate the presence of a "light-chain" monoclonal gammopathy / plasma cell disorder.
If you have had any of these tests done, why don't you post the results, including units and "normal" / "reference" ranges, and we'll help you understand them.
Signs of myeloma in blood tests include low hemoglobin levels, elevated calcium levels, and symptoms of kidney damage, such as elevated creatinine levels. But the first three tests I mentioned earlier are key.
Good luck!
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JimNY
Re: Scared - symptoms for over a year, abnormal labs
JimNY,
Thanks so much for your reply. I can try to post my labs that I got including the SPEP.
Thanks so much for your reply. I can try to post my labs that I got including the SPEP.
- SPEPResults3.jpg (91.94 KiB) Viewed 1688 times
Re: Scared - symptoms for over a year, abnormal labs
Some additional results:
Anion gap 5-6.
Alb/glob ratio 0.93 L
CBC
RBC/HGB 11.5 L
MCV 78.2 L
MCH 25.0 L
MCHC 31.9 L
RDW 15.8 h
How do I tell if I have an "M-spike"?
Anion gap 5-6.
Alb/glob ratio 0.93 L
CBC
RBC/HGB 11.5 L
MCV 78.2 L
MCH 25.0 L
MCHC 31.9 L
RDW 15.8 h
How do I tell if I have an "M-spike"?
Re: Scared - symptoms for over a year, abnormal labs
Hello again, SC:
Usually we tell the new folks how important it is to get a myeloma specialist. In your case, I thought about it a little bit, and you seem to have a blood issue, but it does not look so far like "odds on" multiple myeloma.
If you got a positive for the SPEP test (as Jim NY noted), then yes, you would start zoning in on whether or not you had the pre-multiple myeloma conditions (MGUS or smoldering multiple myeloma) or active multiple myeloma. It does not sound you like have active multiple myeloma right now (I obviously cannot be sure of that). So you need to get a good generalist to figure out your blood issue.
My only advice at this point is for you not to ASSUME anything, but get a good generalist to figure out your issue. You would then be looking to get the right specialist.
Good luck.
Usually we tell the new folks how important it is to get a myeloma specialist. In your case, I thought about it a little bit, and you seem to have a blood issue, but it does not look so far like "odds on" multiple myeloma.
If you got a positive for the SPEP test (as Jim NY noted), then yes, you would start zoning in on whether or not you had the pre-multiple myeloma conditions (MGUS or smoldering multiple myeloma) or active multiple myeloma. It does not sound you like have active multiple myeloma right now (I obviously cannot be sure of that). So you need to get a good generalist to figure out your blood issue.
My only advice at this point is for you not to ASSUME anything, but get a good generalist to figure out your issue. You would then be looking to get the right specialist.
Good luck.
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JPC - Name: JPC
Re: Scared - symptoms for over a year, abnormal labs
I agree with JPC. Your SPEP didn't find a clear sign of an M-spike. It says a "monoclonal band cannot be ruled out", but the analysis did not find an unequivocal sign that there is monoclonal protein present.
So I would speak further with your primary care physician about the possibility of other tests to determine what you have, including the serum immunofixation and serum free light chain tests that I mentioned earlier.
A low albumin/globulin ratio can be caused by many things. In your case, the ratio is low because your globulin level is high. Your albumin level is in the normal range. Without a clear sign of a monoclonal protein being present, and also given your age, the most likely cause is some sort of inflammation or infection, as is mentioned in the SPEP interpretation. The inflammation may be due to an autoimmune disease, many of which could cause the pain you've experienced, and they also can cause anemia. Some infections could also have similar effects.
Good luck, and please let us know what you find out and if you have any further questions.
So I would speak further with your primary care physician about the possibility of other tests to determine what you have, including the serum immunofixation and serum free light chain tests that I mentioned earlier.
A low albumin/globulin ratio can be caused by many things. In your case, the ratio is low because your globulin level is high. Your albumin level is in the normal range. Without a clear sign of a monoclonal protein being present, and also given your age, the most likely cause is some sort of inflammation or infection, as is mentioned in the SPEP interpretation. The inflammation may be due to an autoimmune disease, many of which could cause the pain you've experienced, and they also can cause anemia. Some infections could also have similar effects.
Good luck, and please let us know what you find out and if you have any further questions.
-
JimNY
Re: Scared - symptoms for over a year, abnormal labs
Thank you both SO much for all your help and insight. I truly appreciate it.
Re: Scared - symptoms for over a year, abnormal labs
I went to see a general hematology / oncology office. She seemed like a new doctor, but the first thing she did tell me was that she can't really tell just by my labs, including SPEP, being off, and ordered the immunofixation as well as light chains. I go back in 2 weeks (next week).
She mentioned it could be MGUS, which is a "watch and see" condition, meaning I would just have to keep being monitored by hem. But she also mentioned I might need a bone marrow biopsy. :/
I guess I am hoping for the best and that this just be from an inflammation or autoimmune type condition I have. But the thing that really leads me to believe otherwise and is worrisome is WHY would I have a HIGH abnormal 24-hour urine test? I thought I read somewhere that was a given with multiple myeloma. Hopefully I am wrong.
Thank you everyone and I will keep you posted.
She mentioned it could be MGUS, which is a "watch and see" condition, meaning I would just have to keep being monitored by hem. But she also mentioned I might need a bone marrow biopsy. :/
I guess I am hoping for the best and that this just be from an inflammation or autoimmune type condition I have. But the thing that really leads me to believe otherwise and is worrisome is WHY would I have a HIGH abnormal 24-hour urine test? I thought I read somewhere that was a given with multiple myeloma. Hopefully I am wrong.
Thank you everyone and I will keep you posted.
Re: Scared - symptoms for over a year, abnormal labs
Hi SC,
I read through your thread and this is the first time you mentioned a 24 hour urine test. What value on that test was "high"? Was there any mention of Bence Jones proteins being detected? If it was your overall protein level that was high in your urine, there's lot of things that can cause that condition (proteinura), including the the conditions that Jim mentioned before.
The hematologist is doing the right thing by following up with an immunofixation and a free light chain assay as the next step. The immunofixation test is exquisitely sensitive at detecting the presence of any paraproteins (monoclonal immunoglobulins) in your blood. The free light chain assay is also quite sensitive at measuring another kind of protein that can be associated with multiple myeloma. In rare instances, neither of these serum markers will reveal the presence of multiple myeloma. So, if your hematologist still suspects multiple myeloma after your next round of tests, she may recommend a bone marrow biopsy and radiological imaging (PET/CT, MRI, etc). If you get to that point, you should really seek out a multiple myeloma specialist to oversee the next round of tests.
Lastly, you may also want to scan your comprehensive metabolic pane and CBC test results and share your creatinine, hemoglobin and calcium levels (including the reference values). Those markers can sometimes provide additional clues that multiple myeloma could be involved.
I read through your thread and this is the first time you mentioned a 24 hour urine test. What value on that test was "high"? Was there any mention of Bence Jones proteins being detected? If it was your overall protein level that was high in your urine, there's lot of things that can cause that condition (proteinura), including the the conditions that Jim mentioned before.
The hematologist is doing the right thing by following up with an immunofixation and a free light chain assay as the next step. The immunofixation test is exquisitely sensitive at detecting the presence of any paraproteins (monoclonal immunoglobulins) in your blood. The free light chain assay is also quite sensitive at measuring another kind of protein that can be associated with multiple myeloma. In rare instances, neither of these serum markers will reveal the presence of multiple myeloma. So, if your hematologist still suspects multiple myeloma after your next round of tests, she may recommend a bone marrow biopsy and radiological imaging (PET/CT, MRI, etc). If you get to that point, you should really seek out a multiple myeloma specialist to oversee the next round of tests.
Lastly, you may also want to scan your comprehensive metabolic pane and CBC test results and share your creatinine, hemoglobin and calcium levels (including the reference values). Those markers can sometimes provide additional clues that multiple myeloma could be involved.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
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