Holy crap -- IgM deficiency

[SOC]

I just got my immunoglobulin subset test results and I'm not happy.
IgM: 19.8 (normal range 39.0 - 276.0)
IgA: 125.0 (normal range 85.0 - 543.0)
IgG: 738.0 (normal range 650.0 - 1650.0)

Superficially, this looks like Selective IgM Deficiency (SIgMD) -- low IgM in the context of normal IgA and IgG. Crap. SIgmD is rare, poorly understood, and counter to some of the things immunologists believe about how the immune system works. Theoretically, it shouldn't be possible. Sound familiar?

Fortunately, because the tests exist, immunology accepts that SIgMD is a real, not imagined, condition. Unfortunately, it seems there's not a damned thing to be done about it. Take lots of abx, antivirals, antifungals and hope for the best seems to be the currently available suggestion -- according to the internet, at least.

Looking at the data a little differently --
My IgA and IgG are normal, but just barely. If I'm doing the math correctly, and I'm not sure I am in my slightly gobsmacked condition, my IgA and IgG are in the bottom 10% of normal. So maybe that could be seen as more like a general immunoglobulin deficiency. In that case there seem to be more treatments, such as IVIG.

I'm presently in a mildly shocked state and waiting to hear what my ME/CFS doc has to say about this. As my mind adjusts to this idea, I'd love to hear anything anyone here at PR knows, thinks, or even speculates about my data or immunoglobulins in general.

It's just one damned thing after another with this illness, isn't it?

 

[Symptomatic]

I would ask to have your IgG subclasses checked. My total is in range, but I am at the lowest "normal" number for IgG subclass 1, and have a clear IgG subclass 3 deficiency. My total IgG did not give any indication of this.

 

[SOC]

I would ask to have your IgG subclasses checked. My total is in range, but I am at the lowest "normal" number for IgG subclass 1, and have a clear IgG subclass 3 deficiency. My total IgG did not give any indication of this.

Thanks! I'll look into that.

 

[Ema]

I agree you should get your subclasses checked.

I think your total IgG is lower than optimal. It seems like most healthy people have IgG levels well above 1000.

I think SCIG (Hizentra) has been a great addition to my treatment protocol.

Ema

 

[SOC]

I agree you should get your subclasses checked.

I think your total IgG is lower than optimal. It seems like most healthy people have IgG levels well above 1000.

I think SCIG (Hizentra) has been a great addition to my treatment protocol.

Ema

I agree my IgG definitely suboptimal. The question is whether it is low enough for a doctor to be willing to treat. Guess I'll just have to wait and see what the doctors have to say about the test results.

Do you mind saying how SCIG has helped you? Has it given any general symptom improvement, or is it mostly a question of not always fighting infections (which would be awfully nice)?

 

[SOC]

Ask and ye shall receive. My clever doc (ME/CFS specialist, not local) did order the IgG subpanels. They went to a different lab and so took an extra day for the data to arrive.

My local lab IgG results are:
IgG: 738.0 (normal range 650.0 - 1650.0) Normal

The Mayo Lab IgG results are:
IgG total: 721 (normal range 767-1590) LOW
IgG-1: 389 (normal range 341-894) Normal
IgG-2: 197 (normal range 171-632) Normal
IgG-3: 41.1 (normal range 18.4-106.0) Normal
IgG-4: 13.1 (normal range 2.4-121.0) Normal

So my local lab thinks my IgG is normal, although low normal, but the Mayo Lab thinks my IgG is clearly low. However, my subpanels are normal, although (again) low normal. I'm not sure how all the subpanels can be normal and the total be low. Maybe there's another subset not reported which is seriously low thereby bringing down the total....?

Not sure what to make of all this. Hopefully the doc will have some good ideas about what to do with this info. I'm still a little stunned and overwhelmed.

 

[Sparrowhawk]

Keep breathing. The panic can't help though I know it's sometimes unavoidable. That's encouraging the other panel shows low normal range. It may be retesting could show an error, though, with that first set of results?

 

[SOC]

Keep breathing. The panic can't help though I know it's sometimes unavoidable. That's encouraging the other panel shows low normal range. It may be retesting could show an error, though, with that first set of results?

Thanks! I'm not really panicked at this point -- panic is not really in my emotional repertoire, fortunately. For me it's probably more a mental discomfort. As a research engineer by both nature and training, I like to be able to interpret my data. I hate it when I get data I can't interpret. Maybe it's a touch of OCD . I want to figure it out, but medical data tends to be very sloppy and I don't have the background to know where the hard lines vs flexibility in interpretation are. So my engineer brain keeps picking away at the data trying to tease out meaning-- probably to no purpose. I just need to walk away from it until I get some expert interpretation.

It wouldn't surprise me if my local medical monopoly's lab isn't the best. They like to control everything -- doctors, ER, hospital, lab, insurance (via HMO) -- but control does not guarantee quality.

I'm almost hoping the low IgG tests are correct. There's at least some treatment for that. Better than being in the almost deficient (but not quite), nothing-we-can-do-for-you. not officially sick CFS category.

 

[Ema]

My local lab IgG results are:
IgG: 738.0 (normal range 650.0 - 1650.0) Normal

The Mayo Lab IgG results are:
IgG total: 721 (normal range 767-1590) LOW
IgG-1: 389 (normal range 341-894) Normal
IgG-2: 197 (normal range 171-632) Normal
IgG-3: 41.1 (normal range 18.4-106.0) Normal
IgG-4: 13.1 (normal range 2.4-121.0) Normal

So my local lab thinks my IgG is normal, although low normal, but the Mayo Lab thinks my IgG is clearly low. However, my subpanels are normal, although (again) low normal. I'm not sure how all the subpanels can be normal and the total be low. Maybe there's another subset not reported which is seriously low thereby bringing down the total....?

Not sure what to make of all this. Hopefully the doc will have some good ideas about what to do with this info. I'm still a little stunned and overwhelmed.

I would definitely call these low. They look a lot like mine actually before Hizentra even though my total managed to be in range.

There are testing limitations which is the reason for the variability. Quick! Call all the Lyme deniers...here is another test that isn't perfect so let's throw the baby out with the bathwater and not use it at all! Whoops, sorry, tangent...The tests are different for the subclasses and were more recently developed because they are all so similar in structure. For a long time, testing wasn't able to differentiate the subclasses at all. So I think that is why they are different and don't add up to the total - different methods of testing.

Anyway, I question that range for subclass 3. That is much lower than the Labcorp range while all the others are similar. The Labcorp range is 41-129. Subclass 3 supposedly has a lot to do with viral infections. It's a bugger to try to get it to increase though. But apparently it will normalize after treatment and when infections are addressed enough.

I will be curious what your doctor decides to do...

Hizentra benefits me but in a slow sort of way where I noticed that I was doing a lot more over time. But it didn't keep me from crashing unfortunately! Though I suppose that would be asking a lot of it. It's not magic but just one more tool in the arsenal to bolster the immune system to fight the infections.

I would want to try it if I were you. I hope you can. There's not a lot out there on it for CFS though and a lot of doctors won't give it for subclass deficiencies. I think you could make a case for CVID though with your results and a low IgA. At the bottom of the range is 2 SD below the mean...

 

[SOC]

@Ema--
Thanks, that was all very helpful. Good to know that you got treatment with results similar to mine and that Hizentra is helping you. I am so tired of recurrent respiratory infections and bronchitis. If some form of IG treatment, Hizentra or IVIG, would reduce that, I would be thrilled. I'll definitely be pushing for consideration of IG treatment.

 

[heapsreal]

@Ema--
Thanks, that was all very helpful. Good to know that you got treatment with results similar to mine and that Hizentra is helping you. I am so tired of recurrent respiratory infections and bronchitis. If some form of IG treatment, Hizentra or IVIG, would reduce that, I would be thrilled. I'll definitely be pushing for consideration of IG treatment.

I wonder if its some underlying bacterial infection that basically is burning our immune systems out. I feel alot better on abx especially with URI, just over a dose of bronchitis too. IM getting all the sub classes tested soon with results at the end of november but in the past they are mostly high, iga high and igg high normal, igm good??? I suppose it could be the reverse that we have a weak immune system and than get alot of upper resp infections. most immune defiency illnesses seem to get alot of upper respiratory tract infections etc and as u said earlier its just treated with av's, abx etc
Are your neutrophil counts normal??

cheers!!

 

[SOC]

I wonder if its some underlying bacterial infection that basically is burning our immune systems out. I feel alot better on abx especially with URI, just over a dose of bronchitis too. IM getting all the sub classes tested soon with results at the end of november but in the past they are mostly high, iga high and igg high normal, igm good??? I suppose it could be the reverse that we have a weak immune system and than get alot of upper resp infections. most immune defiency illnesses seem to get alot of upper respiratory tract infections etc and as u said earlier its just treated with av's, abx etc
Are your neutrophil counts normal??

cheers!!

I don't know about other PWME, but my immune results are indicative on long-term chronic (is that redundant?) infection, so I do have signs of my immune system being burned out. Still, it's a chicken or egg situation -- did some primary immune dysfunction allow persistent infections to then burn out other parts of the immune system, or did some infection cause the immune dysfunction in the first place?

I've never been given abx long enough to know if I'd feel better on them. They're very resistant to abx use around here.

My neutrophil counts are normal. They creeped down to the bottom of normal range by the end of my Valcyte treatment, but increased again after that. They've been dropping again since I've been struggling with respiratory infections, but are still well withing normal range.

 

[rosie26]

From my own experience SOC, antibiotic's help a bit for awhile, but once finished the course of antibiotics the infections are inclined to come back with M.E deterioration caused by PEM. It seems that way to me.

The longest I have been on them straight is 6 months, about 3-4 different kinds of antibiotic during this 6 month period. It took that long to get my sinus infection under more manageable control.

 

[Sea]

I've recently learned all my immunoglobulins are low, though they are all within the range except IgA. My lab ranges are different to yours SOC, I'm not sure what units yours are measured in. I'm interested to hear what your doctor does with your results.

Here are my results

IgG 7.65 g/L (5.76 - 15.36)

IgG1 4.66 g/L (4.05 - 10.11)
IgG2 1.87 g/L (1.69 - 7.86)
IgG3 0.18 g/L (0.11 - 0.85)
IgG4 0.36 g/L (0.03 - 2.01)

IgA 0.56 g/L (1.24 - 4.16) LOW

IgM 0.85 g/L (0.48 - 3.10)

 

[SOC]

I've recently learned all my immunoglobulins are low, though they are all within the range except IgA. My lab ranges are different to yours SOC, I'm not sure what units yours are measured in. I'm interested to hear what your doctor does with your results.

Mine are in mg/dL, so multiply yours by 100 or divide mine by 100 to get comparable numbers.

We do have some similarities, although your IgA is quite low while my IgM is the really low one. Has your doc recommended anything for immunoglobulin deficiencies?

 

[Sea]

Has your doc recommended anything for immunoglobulin deficiencies?

My doctor doesn't think these numbers are anything to be concerned about.

 

[SOC]

My doctor doesn't think these numbers are anything to be concerned about.

Even the low IgA? That's depressing.

 

[Sea]

Even the low IgA? That's depressing.

It is frustrating. It seems that unless the IgA is barely detectable it is ignored. I'm not sure what the point of a reference range is when that's the view

 

[aimossy]

there is a wee bit about hypogammaglobulinaemia on patient.co.uk.

 

[SOC]

It is frustrating. It seems that unless the IgA is barely detectable it is ignored. I'm not sure what the point of a reference range is when that's the view

Just what I was thinking -- why have a reference range if being outside it is meaningless? Have you tried taking the info to another doc to see if you can get treatment?