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Old 02-26-2012, 09:03 PM   #1
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Hypogammaglobulinemia

I had some blood work by my neurologist because I have periphial neuropathy. He was concerned because of reduced feeling in feet, and to a lesser case finger, as well as dry eye/mouth problem & diagnosis of gastoparesis last year, that something was working on the nerves.

The results came back & were ok except the MONOGAM SERUM INITIAL, BL. It noted: Hypogammaglobulinemia is present. Immunofixation shows no evidence of a monoclonal protein.

I don't now what the immunofixation means. My IGG & IGM was below normal. My allergist/immunologist said it could be from an infection. She wants to test again in a month with some sort of Titer test. I am not sure what that is. Meanwhile, my neurologist said we don't know the cause of the neuropathy which occurs in about 30% of cases. I had an ANA test about 6 years ago, but it was ok.

Is is there no correlation between my neuropathy & blood test? Is it possible to have a low antibody test one time & normal the next? Not sure what to make out of all this.

 
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Old 03-01-2012, 05:28 AM   #2
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Re: Hypogammaglobulinemia

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Originally Posted by mws952002 View Post
I had some blood work by my neurologist because I have periphial neuropathy. He was concerned because of reduced feeling in feet, and to a lesser case finger, as well as dry eye/mouth problem & diagnosis of gastoparesis last year, that something was working on the nerves.

The results came back & were ok except the MONOGAM SERUM INITIAL, BL. It noted: Hypogammaglobulinemia is present. Immunofixation shows no evidence of a monoclonal protein.

I don't now what the immunofixation means. My IGG & IGM was below normal. My allergist/immunologist said it could be from an infection. She wants to test again in a month with some sort of Titer test. I am not sure what that is. Meanwhile, my neurologist said we don't know the cause of the neuropathy which occurs in about 30% of cases. I had an ANA test about 6 years ago, but it was ok.

Is is there no correlation between my neuropathy & blood test? Is it possible to have a low antibody test one time & normal the next? Not sure what to make out of all this.
If your IgG and IgM are 2 standard deviations below normal range (whatever your labs range is), they may be looking at Common Variable Immune Deficiency or Hypogammaglobulenemia. The "titers" you mentioned are: they will give you a pneumonia and tetanus vaccine, then wait 3 weeks, draw your blood and see if you mounted a response (made antibodies - titers would be your levels). If no to at least one of those, then you may have cvid which is uncureable but a very treatable Primary Immune Deficiency Disease. It presents differently in people: most have gut issues like IBS, some, like me, were constantly sick (like 20 infections per year). Autoimmune disease is very common in people with CVID.

 
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Old 03-01-2012, 05:16 PM   #3
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Re: Hypogammaglobulinemia

Thx for insight. I am similar in I suffer frequent sinus infections. Actually on an antibiotic & medpac now (dosed prednisone). If I did my math correctly, I exceed the 2 std deviations. Will take another blood test in 3 weeks. Best wishes on your treatment and good health.

 
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Old 03-23-2012, 04:28 PM   #4
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Re: Hypogammaglobulinemia

Had follow up bloodwork. Igg & Igm lower than last month test. CBC is normal. Dr waiting for additional blood test results, including igg subclass for interPretation. I assume I will receive cvid diagnosis but not sure. Any thoughts?

 
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Old 03-27-2012, 12:35 PM   #5
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Re: Hypogammaglobulinemia

CVID is only diagnosed once you are immunized and then titers are drawn 3 weeks later. If low or no response in combination with your low IgG and IgM, you get a diagnosis

 
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Old 03-29-2012, 02:33 AM   #6
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Re: Hypogammaglobulinemia

Dr has requested I come in for pneumovax and additional workup. I assume this is the vaccine test.

 
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Old 03-29-2012, 05:25 AM   #7
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Re: Hypogammaglobulinemia

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Dr has requested I come in for pneumovax and additional workup. I assume this is the vaccine test.
Yes it is so after you are vaccinated they will draw your blood in 3 weeks to see if you mount a response.

 
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Old 09-21-2012, 06:25 AM   #8
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Re: Hypogammaglobulinemia

[QUOTE=mws952002;4935133]I had some blood work by my neurologist because I have periphial neuropathy. He was concerned because of reduced feeling in feet, and to a lesser case finger, as well as dry eye/mouth problem & diagnosis of gastoparesis last year, that something was working on the nerves.



I also have hypogammaglobulinemia along with a lot of other autoimmune issues. They are now suspecting that I have Sjogrens Syndrome-the biggest symptom is dry eye/dry mouth and I also have tingling in my hands and feet and gastroparesis-all symptoms of this syndrome.
We thought these symptoms were due to all of my other medical problems until we found a positive SSB (La) test in my records from a visit to Cleveland Clinic many years ago. Since then, however, I have had negative tests, so it can be tricky to diagnose.

You might want to ask your Dr. about this.

~Coping

 
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Old 11-13-2012, 07:56 AM   #9
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Re: Hypogammaglobulinemia

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Originally Posted by mws952002 View Post
Had follow up blood work. Igg & Igm lower than last month test. CBC is normal. Dr waiting for additional blood test results, including igg subclass for interPretation. I assume I will receive cvid diagnosis but not sure. Any thoughts?
I have Hypogammaglobulinemia as well, was told back in 2009 about it.. my Oncologist thinks it is jut from all the chemo and transplant and such with me, but my immunologist based on my past medical history and symptoms as well as current believes I have always had an immune disorder that went undiagnosed due to the dr I had as a child.

 
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Old 06-12-2013, 09:45 AM   #10
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Re: Hypogammaglobulinemia

I am new to this thread and I hope that all who have posted here are able to clarify things for me. I have been undergoing tests for misc conditions, mainly MS, and my neurologist ordered the electrophoresis blood test that came back as having hypogammaglobulinemia. He then referred me to a hematologist. My other regular blood work (CBC) indicates that I also have macrocytosis (too few red blood cells but they are large), a low platelet count, low calcium (all I eat is dairy), and low folic acid. However, the low folic acid just occurred with the most recent blood work and was never a cause of the macrocytosis (this has been showing up for three years, with a steady increase). So I don't think that it is now at all the reason for the macro. However, the hematologist jumped on that bandwagon as the reason and didn't listen when I told him that just showed up. So of course he said that taking folic acid supplements would relieve my fatigue - fatigue I have had for a few years. And I mean like, dozing off at the wheel while driving fatigue! First it was a vitamin D deficiency (very low) that they blamed on the fatigue. However, that is back to normal with supplements. Now it is the folic acid they are blaming as fatigue - don't think so.... What is very frustrating is that the ENT says a low folic acid level would not make me tired, but the hematologist says it would.

Meanwhile, I find this swelling above my clavicle bone and went to my primary doc. He said my lymph nodes on the left side were enlarged and sent me for a CT, which showed a small enlargement on the right side. Neither the ENT nor the hematologist can feel enlargement. However, they both say that a needle biopsy would be a good idea; um, a biopsy on what?! There is nothing there to biopsy!

But I definitely have this Hypogammaglobulinemia as shown on the serum test; I never said that I have cancer!! The hematologist looks at me yesterday and tells me that he should "show me around to those that are in chemo - those that really have cancer." I have NO idea why he would say this. Aren't there other disorders of the blood besides cancer, such as the hypo? I felt like an idiot (or he made me feel like an idiot) for being there. I was merely following the referrals of my doctors. He did do the next step of blood work, with hesitation mind you, telling me that he better just follow the text book...

Any and all comments to this confusion would be greatly appreciated. Thank you....

 
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Old 06-12-2013, 07:38 PM   #11
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Re: Hypogammaglobulinemia

Understand all the confusion; you are at the place I was when I started this post. Iíll provide update later. Sounds like hematologist needs to drop the attitude. Interesting; seems like we share some common experiences; low vitamin D, fatigue and hypogammaglobulinemia discovered from a neurological blood workup. Several years ago, I had low D, the lowest the Dr. said he had ever seen. I went on supplements and it improved. I wonder if there is a relationship to the immune deficiency? I struggle with fatigue but have a stressful job and donít know where stress ends and the immune deficiency begins.

I assume that they have ruled out lymphoma or other blood diseases. I am not familiar with your other issues and how they may play into this. Clearly, youíve got something going on and need to be checked out and monitored. (And immune deficiencies can cause fatigue.) Do you know what your scores are (IGG, IGM, IGA)? Did they check lungs (chest CT)? Abdominal CT? Hypogammaglobulinemia can be primary or secondary. Secondary can be due to cancer, steroids, etc. If nothing is found, it is most likely a primary immunodeficiency. With the enlarged lymph node, it would seem prudent to have the biopsy. You absolutely should NOT feel like an idiot! This is complex and confusing stuff; experiences can be very different for people.
Since I first posted over a year ago, after many CT scans, blood tests and Dr. visits, things are now clearer, but still fuzzy too. I have been officially diagnosed with CVID. In fact I had a follow-up today. Initially, my IGG was 637, mildly low. Today it is 520. IGM is low too, although I did not ask for score. Today I have mild bronchiectasis and fibrosis is in my lungs. The key is to minimize infection to prevent further deterioration. My Dr. also explained (and reminded me again today) a key risk for people with immune deficiency is that we are a much higher risk for cancer. He provided me with an article about this at my second visit. Right now, besides inhalers (I have asthma too) I am on an antibiotic (long term). If I get too many infections, it will be IVIG therapy; but I hope to avoid that.

I know I am not answering your questions, but I want to make sure that 1) you donít feel stupid, and 2) you continue to follow-up, so you can take necessary steps to ensure good health. Believe me, being short of breath is not a pleasant feeling. Donít tolerate a doctor with an attitude. You have questions, as you should, and seek answers. I see you are in Chicago; there are many good Drs. here. Best of luck to you!

 
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Old 06-13-2013, 10:50 AM   #12
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Re: Hypogammaglobulinemia

Thanks for your quick response! As I have read, this hypogamma... needs to be monitored in and of itself, regardless of additional work ups; am I right? I did have a chest and neck CT, where they found the small lymph node that was enlarged. The chest was completely clear (thank God, as I am a smoker - sorry). However, my infections are of my ear (mastoiditis into the bone several years ago) that I continue to battle with, as well as the fact that I have lost all sense of smell, and have optic neuritis for which I lost center vision in my left eye several years ago - with NO explanation. In fact, the ear, smell, and the eye have gone for years with no explanation as to "why" by any doctors. I now have horrific eye-headaches that extend from the eyeball, through it, to the back of my head and of course, down through my left ear (bad one) and into my jaw. The neuro optho examined it a couple years ago and noted also that the eye wanders too. So although I don't necessarily have respiratory issues, I have read that this problem can also cause what I have going on. But no one is putting this all together, so I think I am missing something - such as a good doctor possibly? I have an appointment with my neuro optho at the end of July because I just cannot stand this eye pain, as well as the fact that this eye now also wanders quite badly, enough for me to notice; hard to explain, but as though things are jiggly. However, when I called to make the appointment, I spoke to his assistant and she kept asking me what my neurologist says about the pain, as though this is a neuro thing. My neurologist wrote that off about a year ago as migraine pain.... Um, no it is not.

I just had my blood draw on Tuesday for the other protein serum tests you ask about - the IgG, IgA, IgM, because as I said - the hematologist still wanted to do things "by the book" although he made me feel like an idiot for being there.

As far as an abdominal CT, this is one thing I have not had done; and it is definitely one thing I should have done. I had a major, total hysterectomy, oopherectomy (excision of the ovaries) a few years ago because of adenomyosis disease. It was awful; I had cysts and disease on everything (tubes, uterus, ovaries, and cervix) so they removed everything. My abdomen over the past couple years has become very hard and distended, and I have some sort of cyst on my bottom rib that is growing (again, no explanation except a fatty cyst). I am a relatively average/small person, so this abdominal thing is very noticeable. I also have major GERD and sometimes the pain in my diaphragm is so awful I keel over, as well as misc. pain that comes and goes in there! Do you think I can ask my primary doctor for an abdominal CT?

I go back to see the hematologist in two weeks, but actually how long does it take for these latest blood work results to get back to him?

I really appreciate your help and information, as I am lost, don't feel well ever, and have a family that just does not understand how I feel (and I can hardly blame them when no doctor will give me any definite answers). I have absolutely NO motivation, and that is just not like I used to be; I cannot stand it anymore. Thanks.....

L

 
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Old 06-14-2013, 07:11 PM   #13
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Re: Hypogammaglobulinemia

Sounds like you have a lot going on. I did as well, but Dr.. cannot say it is related to immune deficiency. I am suspect however. Iím curious, if you are just now getting immuglobins measured, how did they come to diagnose hypogammaglobulinemia? Infections are a trademark of this problem; often overlooked. Lucky you don't have lungs involved. The blood work is pretty quick. The question is, will this lead to another diagnosis. While I have hypo (I'll shorten it) it took a while to get the official diagnosis of CVID (common variable immune deficiency), which the Dr. says is not common as name implies. He also said many Drs. don't recognize, but there can be a mucosal component too. So for now, stable even though Ig levels keep dropping.
If your blood work comes back with low Ig levels, Dr. may do a pneumonia vax test. This is where they immunize you for pneumonia then test your response to the 23 strains (after a 3-4 week wait). That could lead to CVID diagnosis.
Kike I mentioned earlier, this takes a while and can be nerve racking. Hang in there; definitely go to Dr. you are comfortable with and explains things.

Before I close, a funny, but not funny story ... I developed severe pain in lower abdomen, so I went to ER (was a kidney stone). When I told ER Dr. that I had CVID, he said .. "whatís that" .... I then explained to him an immune deficiency. I now just say that I have an immune deficiency, low antibodies. I thought Drs. knew it all! :-)

 
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Old 06-14-2013, 08:22 PM   #14
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Re: Hypogammaglobulinemia

I will try to make some connections for you from the pieces you have shared. Your peripheral neuropathy could be from a few things other than folic acid. Vitamin B12 deficiency also causes PN and macrocytosis. Hypothyroidism causes PN. Alcohol in excess caues PN and macrocytosis. Autoimmune diseases like lupus cause PN too. Lupus and hypogamma... can coexist. Lupus causes severe fatigue, as does low thyroid.Vit D and B12 deficiency are both common in lupus. It can also affect the eyes as in uveitis, which another poster mentioned. You can research CVID and SLE (systemic lupus) to see the connection. I would also research lupus in general to see if there are other symptoms present that you didn't mention. So my suggestion would be to make sure you had thyroid tests, B12 levels, and ask to have an ANA repeated along with sed rate and CRP to check for inflammation. A CBC sometimes shows low WBC and platelets in lupus. Enlarged lymph nodes are common in lupus. They may not be thinking along those lines because you are male, and lupus affects women 9:1 ratio to males. These conditions can be very complex, with lots of twists and turns that sometimes head people down the wrong path. There is a new initiative by a prominent lupus organization to get Drs to be more aware of the many symptoms and varied presentations this disease can have, so people can get identified and treated earlier.

 
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Old 06-14-2013, 08:25 PM   #15
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Re: Hypogammaglobulinemia

I will try to make some connections for you from the pieces you have shared. Your peripheral neuropathy could be from a few things other than folic acid. Vitamin B12 deficiency also causes PN and macrocytosis. Hypothyroidism causes PN. Alcohol in excess caues PN and macrocytosis. Autoimmune diseases like lupus cause PN too. Lupus and hypogamma... can coexist. Lupus causes severe fatigue, as does low thyroid.Vit D and B12 deficiency are both common in lupus. It can also affect the eyes as in uveitis, which another poster mentioned. You can research CVID and SLE (systemic lupus) to see the connection. I would also research lupus in general to see if there are other symptoms present that you didn't mention. So my suggestion would be to make sure you had thyroid tests, B12 levels, and ask to have an ANA repeated along with sed rate and CRP to check for inflammation. A CBC sometimes shows low WBC and platelets in lupus. Enlarged lymph nodes are common in lupus. They may not be thinking along those lines because you are male, and lupus affects women 9:1 ratio to males. These conditions can be very complex, with lots of twists and turns that sometimes head people down the wrong path. There is a new initiative by a prominent lupus organization to get Drs to be more aware of the many symptoms and varied presentations this disease can have, so people can get identified and treated earlier. I hope this connects a few of the dots for you.

 
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