Not exactly sure where to start but in the process of a second opinion for primary bone marrow disease.
I have a history of chronic leukocytosis, at times elevated platelets, and long term erythrocytosis. Physically exhausted, itchy, bone pain, RLS, stroke history, radiculopathy, osteoarthritis, and petechiae, prominent spleen (xray), chronic infections (I'm sure of one thing, my medical history is very long and complicated)
I'm concerned about not getting treatment for a primary myeliprolifirative disorder because I'm being dismissed with thoughts of secondary caused by my long term smoking. I'm female, 44 years old.
To hopefully be specific my current labs on CBC show leukocytosis and erythrocytosis, normal high end platelets.
A recent fast growing, thought to be exostisis on lower mandible, prompted a dentist to remove a tooth nearest that was cracked, after a course of antibiotics thought to be an abscess. Long story short, tooth is gone but the bony tumor remains.
Oddly a CBC showed a normal WBC count for the first time in years one day on antibiotic went from previous 13.8 on March 17, 17.2 on March 30, and 9.9 on April 2; however the differential on the normal count showed elevated basophils.
Hematocrit and hemoglobin most recent something like 51.3 and 17.2. Sorry no paper in front of me, but very close estimate, although my concentration has been shorty lately with chronic headaches I can say those are close.
My PC ordered a SPEP which was relatively normal with the exception of a faint band.
Seeing a hematologist, SPEP, EPO, and immunofixation was done to "find where the band was coming from"
Results of above testing
Mostly normal
Erythrocytosis
IgA immunoglobulin elevated slightly at 470
My main question / concern is the EPO level, which was low, but actually existed at I believe 1.3 and the range
March 30, 2015
CBC
WBC 17.2 (H)
HCT 52.7 (H)
HGB 17.3 (H)
Started antibiotic March 30, 2015
After 2 days antibiotic April 2, 2015 hematologist / oncologist
WBC 9.9 (NORMAL)
BASO % 1.2 (H)
HCT 49.9 (H)
HGB 17.1 (H)
EPO 1.3 (L) lab range 2.6-18.5
IMMUNOFIXATION:
IgA 470 (H) range 91-414
IgM 91 range 40-230
IgG 1107 range 700-1600
What does the IgA elevation indicate? Is that an abnormal finding or can it be caused by infection / smoking?
My understanding on the EPO is that it would be absolutely elevated if smoking or secondary and low if the abnormality is coming from the marrow as opposed to reactive / secondary.
The hematologist I saw mentioned that true polycythemia vera has a non existent EPO but if I do smoke would / could the low EPO be elevated falsely?
I'm in the process of a second opinion but would like to know if these labs indicate monoclonal gammopathy - or M-protein (I don't understand the correlation),
I guess between the M-spike (I do not have) and the "faint band" and IgA elevations on the SPEP and immunofixation tests and if the EPO is low why the doctor insists, even though symptomatic this is all because I smoke and suggest retesting in a year!
Apologize for the length, and appreciate greatly and mostly thoughts on the EPO and if this warrants a second opinion for treatment and help.
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Re: Primary or secondary polycythemia?
Sorry if I'm missing something, but why are you asking if you have primary or secondary polycythemia in a forum about multiple myeloma and related plasma cell disorders?
Your hemoglobin is high, which would be unlikely in the case of multiple myeloma, where anemia is often a symptom. More broadly, myeloma tends to depress blood cell counts, so the elevated counts you have of various white blood cells doesn't seem to fit with a myeloma diagnosis either.
There are a wide range of things that can cause a slightly elevated IgA level such as the one you have. You can find a list of potential explanations by just doing an Internet search on "elevated IgA". Myeloma is just one of many possible explanations, and it is probably the least likely in someone your age.
You list your immunoglobulin levels under the label "immunofixation", but that really isn't what an immunofixation test tells you. The immunofixation test is what mentioned something about a "faint band". What was the exact text?
Have you had a serum protein electrophoresis (SPEP) yet and, if so, what were the results?
Also, what is your calcium level and your serum creatinine level? And have you had your serum free light chain levels checked?
As I said, I doubt that anything related to myeloma is the source of the problem in your case. The only thing that possibly points in that direction is the "faint band" that you mentioned, but all the other tests you've shared don't really suggest myeloma.
Also, given that you're working with a hematologist/oncologist now, you're in the hands of someone who is really best suited to help you figure out what is behind the problems you've had.
Your hemoglobin is high, which would be unlikely in the case of multiple myeloma, where anemia is often a symptom. More broadly, myeloma tends to depress blood cell counts, so the elevated counts you have of various white blood cells doesn't seem to fit with a myeloma diagnosis either.
There are a wide range of things that can cause a slightly elevated IgA level such as the one you have. You can find a list of potential explanations by just doing an Internet search on "elevated IgA". Myeloma is just one of many possible explanations, and it is probably the least likely in someone your age.
You list your immunoglobulin levels under the label "immunofixation", but that really isn't what an immunofixation test tells you. The immunofixation test is what mentioned something about a "faint band". What was the exact text?
Have you had a serum protein electrophoresis (SPEP) yet and, if so, what were the results?
Also, what is your calcium level and your serum creatinine level? And have you had your serum free light chain levels checked?
As I said, I doubt that anything related to myeloma is the source of the problem in your case. The only thing that possibly points in that direction is the "faint band" that you mentioned, but all the other tests you've shared don't really suggest myeloma.
Also, given that you're working with a hematologist/oncologist now, you're in the hands of someone who is really best suited to help you figure out what is behind the problems you've had.
Re: Primary or secondary polycythemia?
Thank you for your reply. It's been a long haul with this all and I was under the assumption that multiple myeloma, MGUS, marrow disorders were all part of the same type myeloproliferative diseases such as polycythemia.
I've always had an elevated rbc as well with last year severe chronic iron deficient anemia. I was confused as to this but it was more of a nonexistent ferritin level, with the elevated counts and erythrocytosis. After failing for a year on oral iron I was infused last year and that corrected the iron issues but still with leukocytosis. My fears are like MGUS or a smoldering myeloma or something like primary polycythemia vera . I was unaware, and apologize if I'm in the wrong place.
The SPEP was done as stated above, and the hem / onc interpreted it with "there is a faint band seen," but primary care physician did not further characterize where this is coming from.
In looking directly at the IFE (immunofixation serum test) that IS where the three IgM, IgA, IgG levels show as above with the minimal elevation in IgA.
The concern I have, as stated, is with the low EPO level, as it would be elevated if secondary polycythemia and will check out another forum if I'm in the wrong place.
Previous calcium has been high and currently within normal highest end range
As for the creatinine I will have to check but do recall the level of BUN being abnormal.
Thanks again.
I've always had an elevated rbc as well with last year severe chronic iron deficient anemia. I was confused as to this but it was more of a nonexistent ferritin level, with the elevated counts and erythrocytosis. After failing for a year on oral iron I was infused last year and that corrected the iron issues but still with leukocytosis. My fears are like MGUS or a smoldering myeloma or something like primary polycythemia vera . I was unaware, and apologize if I'm in the wrong place.
The SPEP was done as stated above, and the hem / onc interpreted it with "there is a faint band seen," but primary care physician did not further characterize where this is coming from.
In looking directly at the IFE (immunofixation serum test) that IS where the three IgM, IgA, IgG levels show as above with the minimal elevation in IgA.
The concern I have, as stated, is with the low EPO level, as it would be elevated if secondary polycythemia and will check out another forum if I'm in the wrong place.
Previous calcium has been high and currently within normal highest end range
As for the creatinine I will have to check but do recall the level of BUN being abnormal.
Thanks again.
Re: Primary or secondary polycythemia?
Hello NorthernJessie,
Myeloma is not one of the myeloproliferative disorders (or neoplasms, as they are sometimes called). There are various definitions of what diseases are included in the group of myeloproliferative disorders, but one of the definitions includes these diseases:
Myeloma is in a different category of diseases known as "plasma cell dyscrasias", or diseases that involve the plasma cells.
The description of your test results is confusing to me. Normally, the SPEP is what gives you a quantitative estimate of what is commonly called your "M-spike". It's the kind of protein produced by the cancerous plasma cells that people with myeloma have. It's the immunofixation report that qualitatively (not quantitatively) tells you whether there has been any sort of M-spike found, and what type it is (for example, IgG or IgA).
So I don't know why the "immunofixation" test is showing levels of your IgG, IgA, and IgM. Normally, that would be reported on a separate "immunoglobulins" test.
As I mentioned before, I suspect that there is enough going on in your case that it will be best to work with your hematologist / oncologist to figure out what exactly is the cause of the health issues you've been experiencing. Other than the "faint band" that you mentioned earlier, most of your results point to something other than myeloma.
Good luck!
Myeloma is not one of the myeloproliferative disorders (or neoplasms, as they are sometimes called). There are various definitions of what diseases are included in the group of myeloproliferative disorders, but one of the definitions includes these diseases:
- Chronic myelogenous leukemia (BCR-ABL1–positive)
- Chronic neutrophilic leukemia
- Polycythemia vera
- Primary myelofibrosis
- Essential thrombocythemia
- Chronic eosinophilic leukemia (not otherwise specified)
- Mastocytosis
Myeloma is in a different category of diseases known as "plasma cell dyscrasias", or diseases that involve the plasma cells.
The description of your test results is confusing to me. Normally, the SPEP is what gives you a quantitative estimate of what is commonly called your "M-spike". It's the kind of protein produced by the cancerous plasma cells that people with myeloma have. It's the immunofixation report that qualitatively (not quantitatively) tells you whether there has been any sort of M-spike found, and what type it is (for example, IgG or IgA).
So I don't know why the "immunofixation" test is showing levels of your IgG, IgA, and IgM. Normally, that would be reported on a separate "immunoglobulins" test.
As I mentioned before, I suspect that there is enough going on in your case that it will be best to work with your hematologist / oncologist to figure out what exactly is the cause of the health issues you've been experiencing. Other than the "faint band" that you mentioned earlier, most of your results point to something other than myeloma.
Good luck!
4 posts
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