Hypogammaglobulinemia

Hello @hopeful33250
I’d like to thank you for asking details. Kind of keeps me discussing all of this with someone. I honestly can say I am just as confused now as I was before that doc appointment. The hematologist was also oncology doc which I was told I was not seeing him for cancer. However; I was lied to about that. I guess I was sent there to see if I have multiple melanoma. He took the autoimmune part & acted as if that was no big deal. Even told me he sees it all the time which I found strange considering the info I’ve read about it. I was hoping for answers but really got nowhere. He told me that I did not look like someone who had multiple melanoma & he was pretty sure I didn’t but I was sent there by my neurologist for him to evaluate that & to see if I did. I was so upset to find out they lied to me about why I was seeing him. Well anyways he wanted me to do more bloodwork said I could right then. I went to do it and they only would do a couple of the 4 he ordered. 2 require me to fast & be completely stress free. (Yea right) that’s not gonna happen. I would really appreciate it if anyone could tell me what kind of doctor I need to see for the hypogamaglobulinemia & if someone could explain more to me what it actually is specifically. I think I understand that it can be primary or secondary & there is different types?? But I super confused on what I should do next. I saw my primary doctor as well that day. He flat out told me that he doesn’t know anything about this stuff at all. He also added that an autoimmune disease definitely explains a lot for how much I was getting sick constantly with certain types of infections. I’m scared right now because I have no idea what to expect or where to go. I haven’t told any of my family members about any of this expect my husband & my brother. I don’t know what to say to any of them. I don’t have the answers to their questions right now & I do not want my adult kids to start freaking out without them having the knowledge of what everything is. So I greatly appreciate any information. Thank you to everyone.

Sincerely grateful

Hello- I have this...it’s also known as CVID or common variable immune deficiency with predominant B cell damage. I had to advocate for myself also until an infection hospitalized me! U need to see a IMMUNOLOGIST/allergy doc!!! They will, to ck ur immunity, give u either a pneumonia shot or even tetanus shot (very little) to see how ur immune system reacts. Mine barely did so I was put on human gamma globulins every four weeks...this is a lifetime process. In 4 yrs I have been on 103 antibiotics, as they r the tx for this dz! Now, I know how I got mine n would love to pick ur brain on s/s that u have if ok. I am disabled now but am a RN n have a MPH
Lisa

I have been diagnosed with CVID also, after they diagnosed me with MAC. MAC often occurs in people with compromised immune system, so they check your immunity as part of MAC workup-- turns out I had low gamma globulins so they they looked at my vaccine reactions. Now, I do scig (gamma globulin from pooled plasma, that I infuse myself with) every week-- which brings my gamma globulin levels ups to the middle of normal reference range, I highly recommend SCIG instead of IVIG because you do it more often and put a lot less in your body at one time so there fewer side effects. I was very worried I would not react to the Covid moderna vaccine--but I had my titer tested and I did. I made a ton of IgG antibodies to the Moderna vax. Yay.

Hi Lisa, thanks for the response. It’s really helpful to hear how this disease impacts ur life. I don’t know what s/s means exactly? If you could explain a little that’d be great. Your welcome to pick my brain. I’m so happy I found this group considering I’ve gotten more answer here verses any doctors yet. I don’t even really understand why I needed to be checked for multiple melanoma to be honest. I wonder if this is a generic disorder & if I need to have my kids checked too. I had a terrible bout of pneumonia about 5 yrs ago when I went to see my mother in another state. It landed me in the hospital there for 6days on oxygen. I currently have asthma & have since age 13. I struggle with breathing problems already so getting that shot would not be on top of my list. I’ve had the tetanus shot & never had a reaction in the past that I can remember. I suppose I need to find me an immunologist.
Autumn

My gamma globulin is very low. I still don’t quite understand what all the blood work means. My proteins are very high and other things very low. I don’t know what all matters in the blood work to define this. I can tell you currently I don’t feel that bad. I get a lot of sinus infection as well as lung related issues, bruise super easy & take forever to even heal. Seems if something starts bleeding it takes forever to get it to stop, I’m tired a lot but I also don’t sleep well either, & I’ve noticed different little things that have either started happening or gotten worse. I really wish I knew what it all meant. I could see doing treatments at home though. Sounds like it would be a lot easier overall. I’m not afraid of anything medical really. Before my Auto accident I was going to college to be a medical assistant. Makes it easier to loo at certain things.
Sincerely, Autumn

Morning,
The white blood cells r ur immune system n the big generals, we can call them, r ur IgG, IgM, IgA. These “generals” tell all the monocytes, lymphocytes etc what to do...when these generals r not working properly, infection is eminent. IgG is the most prevalent general (protein) in ur body, IgA is in ur respiratory tract n lining of ur lungs as is IgM. When these don’t work properly, u have to have the IgG either IV or in ur belly (sub q). I have a port in my chest now which makes life much easier!

Morning, s/s means signs n symptoms. I believe they’re checking u for multiple myeloma which is a very wicked blood cancer...it runs in my family 😞 yes, get on a immunologist ASAP! They will give u a booster of like pneumonia or tetanus booster to see how ur immune system reacts to it...if good response, u prob don’t have cvid, bad response...most likely

@sassykitten93, The best thing I have found for my RD is to start with the link to http://www.omim.org/entry/hypogammaglobulinemia Even to tell your doctor about this ink. That group has saved and/or made better many lives. It is, remember, just a place to start. If you have other issues, just replace hypogammaglobulinemia with whatever the other issue is. Then follow wherever that goes. As for hypogammaglobulinemia, that growth hormone deficiency is a tough one, but you can deal with it if you know what the issues are. I have about 90 genes and variants which are marked as "Deprecatory" by some lab or wizard. I started with gene sequencing by Ambrygen.com, AncestryDNA.com, Sequencing.com. Wikipedia also has a lot of great stuff on some of these diseases. Treat your case first by seeing it as a learning experience. Have fun by teasing your enemies.

Thank you for the information. I will find me one. The oncologist told me that I did not look like someone who had multiple melanoma & he did not think I did but he needed to check some things to rule it out. I had some blood work but I’m not sure what it means where cancer is concerned. Today I tried to get answers from them cause the doc left me a very vague message & it made no sense. It seems he’s fixated on 1 symptom I’ve had for years where my cheeks & ears get red. I tried to explain to him my blood pressure is not affected when it happens but somehow he came up w/the idea that it shot right up & then I turned white as a sheet. I swear these docs make up their own crap. I never once said that nor gave any impression of it. So he just decided that was an issue I had. Dear lord!! Not the first time a doc TOLD me a symptom I had that was so far from the truth. Makes me mad! Since Thursday I’ve been trying to get the nurse to call me back & answer my damn question but no luck there. Tried today as well & of course nothing. I’m about ready to go to U of M in Ann Arbor Mi. It’s only 2hrs from me.

Thanks that makes a lot more sense. I know the one protein is very high, the gamma is very low, RBC is very low (barely into range), and WBC is about middle maybe little lower. I have had a bunch of bloodwork so they could rule out Lupus, rheumatoid arthritis, & other things. That’s where the hypogammaglobulinemia showed up.