Chronically high total IgM

[M Nosson]

I have quite high IgM levels, that shocked my internal medicine doctor. He didn't believe it was correct, and ran the test again, and it was indeed correct. My total IgM continues to be high enough that an immunologist said I should be monitored for hematologic malignancies. She said high IgM is a very non-specific marker of acute inflammation and didn't seem interested in figuring out why it is high, but is checking some other labs mostly to rule out cancer again.

How common is this lab finding in our patient population? My total IgA is low and my total IgG is within range but at the low end. IgG 4 subclass is low. Low NK cells (CD56), high T cells (CD3 and CD8).

Does anyone have insights about what could be causing high IgM? I have done antimicrobial, antiviral and antiparasitic treatment, worked on heavy metals, I'm a mold avoider following acute mold exposure ten years ago, I'm on MCAS treatment, and continue to be pretty sick.

Alternately, can anyone direct me to threads already existing that address this topic? I'm not finding much from searching. Thank you!

 

[linusbert]

thats what chatgpt has to say about it:

what are reasons for high levels of Immunoglobulin M (IgM)?

Immunoglobulin M (IgM) is a type of antibody produced by the immune system in response to an infection or foreign substance. Here are some possible reasons for high levels of IgM:

1. Acute infection: IgM levels can be elevated during an acute infection, indicating that the immune system is actively fighting off the infection.
2. Chronic infection: IgM levels can remain elevated in chronic infections, indicating that the immune system is still trying to fight the infection.
3. Autoimmune disorders: In some autoimmune disorders, the body produces IgM antibodies that attack its own tissues, leading to elevated levels of IgM.
4. Liver disease: Liver disease can cause elevated levels of IgM due to impaired liver function and reduced clearance of IgM from the blood.
5. Primary immunodeficiency: Some primary immunodeficiency disorders can cause elevated levels of IgM due to the inability of the immune system to properly regulate antibody production.
6. Lymphoma: Some types of lymphoma can cause elevated levels of IgM due to the production of abnormal monoclonal IgM antibodies.

It is important to note that high levels of IgM alone do not necessarily indicate a specific diagnosis and should be interpreted in the context of other clinical and laboratory findings. Further testing and evaluation may be necessary to determine the underlying cause.

no medical advice, and chatgpt makes up content sometimes.

my advice for any immune system related situation is to have no vitamin D deficiency and at least a level of 40ng/ml in blood.

 

[cheeseater]

Did they check your blood for Waldenstrom's Macroglobulinemia? High IgM is a key marker.

 

[Gingergrrl]

My total IgM continues to be high enough that an immunologist said I should be monitored for hematologic malignancies.

Does anyone have insights about what could be causing high IgM?

I went through this several years ago and my IgM was elevated and kept increasing. My main doctor kept monitoring it and my IgM kept going up. He was concerned and had me do several panels (both blood & urine) to check for MGUS and cancer. Thankfully all of those tests were negative so he ruled out cancer and felt that my elevated IgM was part of my overall autoimmune disease. As I continued w/my treatments for autoimmunity, my IgM ultimately went back into the normal range and has stayed normal.

 

[M Nosson]

Did they check your blood for Waldenstrom's Macroglobulinemia? High IgM is a key marker.

My immunologist mentioned this and I think they have checked for it, since I have had serum protein electrophoresis tested a few times, but they are re-testing that and also testing serum light chains. Hopefully this will be ruled out. I'd prefer not to do a bone marrow biopsy and I think if I were referred to a hematologist that might be what they would do, but I don't know. Thank you for mentioning this!

 

[M Nosson]

I went through this several years ago and my IgM was elevated and kept increasing. My main doctor kept monitoring it and my IgM kept going up. He was concerned and had me do several panels (both blood & urine) to check for MGUS and cancer. Thankfully all of those tests were negative so he ruled out cancer and felt that my elevated IgM was part of my overall autoimmune disease. As I continued w/my treatments for autoimmunity, my IgM ultimately went back into the normal range and has stayed normal.

Thanks so much for sharing this. That's great that your IgM went back down eventually! I'm wondering what sort of treatment for autoimmune issues you received? My immunologist told me I have autoimmunity because of high CD3 and CD8 (news to me, I really hadn't realized that's what it meant), but I don't know the specifics of how or where exactly it is expressing, and have not been offered any treatment for it.

My immunologist is testing free light chains, but I don't think they have tested for M protein. Maybe I will ask for that as part of ruling our MGUS and cancers.

 

[M Nosson]

thats what chatgpt has to say about it:

what are reasons for high levels of Immunoglobulin M (IgM)?


no medical advice, and chatgpt makes up content sometimes.

my advice for any immune system related situation is to have no vitamin D deficiency and at least a level of 40ng/ml in blood.

Thanks so much for sharing this. I'm taking a good amount of vitamin D and will keep at it.

Of all the possibilities for causes of high IgM, I think chronic infection is the most likely, but my immunologist refuses to do viral testing. I'm just DIY treating, which is so frustrating. I guess continuing with mold detox and herbal antivirals is what I can do for now, in addition to all the screening for possible cancers.

I recently had an ultrasound for a swollen area in the back of my neck, which came back showing normal lymph nodes which is great. I do think about the well known higher rates of Non-Hodgkin Lymphoma in ME patients, and wonder if high IgM is related to that.

https://www.reliasmedia.com/article...lymphoma-in-chronic-fatigue-syndrome-patients

 

[Gingergrrl]

I'm wondering what sort of treatment for autoimmune issues you received

High dose IVIG & Rituximab.

My immunologist told me I have autoimmunity because of high CD3 and CD8

I don't think that my CD3 and CD8 were elevated (if I recall correctly)?

My immunologist is testing free light chains, but I don't think they have tested for M protein. Maybe I will ask for that as part of ruling our MGUS and cancers.

I can go back through my folders to check which tests I had for MGUS if this would be helpful for you. When you said "free light chains" that sounds very familiar but I was tested for this in 2018 and don't recall the specifics.

 

[cheeseater]

My immunologist mentioned this and I think they have checked for it, since I have had serum protein electrophoresis tested a few times, but they are re-testing that and also testing serum light chains. Hopefully this will be ruled out. I'd prefer not to do a bone marrow biopsy and I think if I were referred to a hematologist that might be what they would do, but I don't know. Thank you for mentioning this!

They can definitely rule out Waldenstrom's without doing any sort of biopsy.

 

[M Nosson]

High dose IVIG & Rituximab.



I don't think that my CD3 and CD8 were elevated (if I recall correctly)?



I can go back through my folders to check which tests I had for MGUS if this would be helpful for you. When you said "free light chains" that sounds very familiar but I was tested for this in 2018 and don't recall the specifics.

Thank you so much for sharing this, I really appreciate it. My sincere apologies for my delay, some serious things came up in life. If it is easy to check which tests were run, that would be so helpful, but if it is difficult, no worries. Thank you!

I was really hoping to qualify for IVIG but my IgG is not low enough for it.

 

[M Nosson]

They can definitely rule out Waldenstrom's without doing any sort of biopsy.

Thanks so much for this info! I don't think I would agree to do a biopsy anyway, good to know it really isn't necessary to rule that out.

 

[Gingergrrl]

If it is easy to check which tests were run, that would be so helpful, but if it is difficult, no worries. Thank you!

I'll go through my folders and hopefully be able to find the tests for MGUS that my former doctor had me do back in 2018. It is no trouble at all and I will let you know what I find.

I was really hoping to qualify for IVIG but my IgG is not low enough for it.

My IgG was never low and I got IVIG for autoimmunity (not for immune deficiency).

 

[Gingergrrl]

@M Nosson I just went through my files & folders and had no idea the level of disarray that they are in! So I am not sure if this info will actually be helpful but will let you know what I found. My IgM kept going up into the 200's and then 300's until my doctor decided that we needed to rule out MGUS & cancer (back in late 2017 and early 2018).

He was testing me for "Protein M" in blood & urine to rule out "Monoclonocal Gammopathy of Unknown Significance" (MGUS) & Waldenstrom's & non-Hodgkins Lymphoma (if I am understanding my notes right from 4-5 years ago)?

The tests that he ordered were "Immunofixation, Protein Electropheresis, serum; Quantitative Free k and a light chains, and also Immunofixation & Protein Electropheresis with a 24-hour urine collection. I can't remember if I did those tests at Quest versus LabCorp (but definitely one of those the two major labs).

I also can't find the results but I remember 100% that my results came back normal on all of those tests which my doctor said ruled out MGUS & cancer. My IgM ended up normalizing and my doctor felt that it had been elevated due to autoimmunity, which made sense that it went back to normal level as my overall autoimmunity improved.

 

[M Nosson]

@M Nosson I just went through my files & folders and had no idea the level of disarray that they are in! So I am not sure if this info will actually be helpful but will let you know what I found. My IgM kept going up into the 200's and then 300's until my doctor decided that we needed to rule out MGUS & cancer (back in late 2017 and early 2018).

He was testing me for "Protein M" in blood & urine to rule out "Monoclonocal Gammopathy of Unknown Significance" (MGUS) & Waldenstrom's & non-Hodgkins Lymphoma (if I am understanding my notes right from 4-5 years ago)?

The tests that he ordered were "Immunofixation, Protein Electropheresis, serum; Quantitative Free k and a light chains, and also Immunofixation & Protein Electropheresis with a 24-hour urine collection. I can't remember if I did those tests at Quest versus LabCorp (but definitely one of those the two major labs).

I also can't find the results but I remember 100% that my results came back normal on all of those tests which my doctor said ruled out MGUS & cancer. My IgM ended up normalizing and my doctor felt that it had been elevated due to autoimmunity, which made sense that it went back to normal level as my overall autoimmunity improved.

Thank you so much for looking back into your medical notes for me! I apologize for my delay again, I didn't get an email notification about it and I usually do.

I'm in Canada so the units that IgM is measured in here are different, but if I do the conversion to mg/dL, my IgM has been in the 400's and 500's, as high as 590. But not consistently going up, there has been some up and down.

It looks like I have had serum protein electrophoresis tested (always normal), and Free Kappa/Lambda Light Chain Ratio, but I haven't had "Protein M" tested, or immunofixation & protein electrophoresis with 24 hour urine collection.

Thank you so much for sharing with me! Maybe I will push to get "Protein M" tested. Might have to see a hematologist if the immunologist is not willing to run the test. It's very helpful to hear your experience, because my immunologist doesn't seem very willing to answer my questions. Thanks again!

 

[Gingergrrl]

Thank you so much for looking back into your medical notes for me! I apologize for my delay again

No worries and I'm so glad that I could help!

my IgM has been in the 400's and 500's, as high as 590

I think that my IgM was in the upper 300's but never went into the 400's (if I recall correctly).

Thank you so much for sharing with me! Maybe I will push to get "Protein M" tested. Might have to see a hematologist if the immunologist is not willing to run the test. It's very helpful to hear your experience, because my immunologist doesn't seem very willing to answer my questions. Thanks again!

I think it would definitely be worth it to see a hematologist (if you have the opportunity) to try to sort this all out. Best wishes and I hope that you will get some answers soon.