Hi again. Yesterday I asked my GP if I could have my blood immunoglobulin levels checked as I like to keep a handle on those parameters which can indicate the status of my immune system. To be honest, I thought this would be done without question and routinely. However, my doc prefers that my CLL haematologist should write to him requesting immunoglobulin testing, rather than the request just coming from his patient. How unusual or non-standard is immunoglobulin blood testing for us CLLers? I’m confused.
Immunoglobulin tests: Hi again. Yesterday I... - CLL Support
Immunoglobulin tests
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Fogey
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I can only speak to my experience with my hemato-oncologist in my little corner of Canada. My doctor doesn’t normally order those tests unless a CLL patient starts to experience frequent infections. Perhaps certain changes in some blood numbers might prompt it as well. And in our health care system, patients cannot really “self-refer” for laboratory tests like that, so I have never had those tests done.
Emgeegee, that's interesting. Can you say. If you are in treatment for CLL or have been in treatment.?
Every Canadian patient however has the right to ask for copies of all tests - if and when our community healthcare starts to respect patients as partners in their own healthcare as happens in research communities, one might be able to request those tests - let's hope our society transitions in this way!
Hi Fogey!
I had them done once. My specialist won't do them again unless I have frequent recurrent infections. He said he hates to do tests that are not necessary. I agree with Emgeegee.
I’d agree with Emgeegee. They don’t order these tests a matter of course. That being said, the two hospitals I’ve been seen at did order these tests when I was originally onboarded at each hospital. At my current hospital they seem to be ordered periodically (maybe every year, year and a half) if I request them. My immunoglobulins are very low but I haven’t gotten infections so my low levels don’t seem to be too concerning to my doctor. The immune system is highly complex and somehow my system is working despite the low levels of immunoglobulins. Other patients have higher immunoglobulin levels but they get infections more often. I think you are well within your right to ask for this test and my guess is your CLL specialist will do so but understand the results are not conclusive of how your immune system is functioning. A useful data point for sure but because you haven’t been getting sick your doctor apparently isn’t too worried?
Best,
Mark
Thanks HopeME. I understand that immunoglobulin levels are just a part of the immune system picture. I have had a double dose of Covid and a chest infection so feel that my request is reasonable. Seems that I just asked the wrong person first. Talking to my CLL specialist next week. But I might have to apologise to my GP! Didn’t mean to self-refer for a slightly non-standard test. Thought it was routine for us CLLers. So much to learn! Glad your low immunoglobulin levels aren’t a problem for you. Best wishes.
Hi, I think it's a perfectly reasonable request, given the infections that you've had. Having said that, if you're seeing your CLL doctor soon I would save it for then and it should be checked as a matter of routine.
I think the trouble with GPs is that if they ask for it and then the results are abnormal, they are left not knowing what to do with the information apart from asking your haematologist to review them.
Fogey, I don't think you should feel apologetic about asking for these tests. Your GP is reasonable in feeling that it's not a test ordered in a GP practise. But given your history and concerns the GP could have kindly guided you to speaking with your consultant. And I don't think you need to feel you need to abologise. I am in treatment and my immunoglobulins are a bit low. They are tested every time my blood is routinely tested in hospital when I see my consultant, every 3 months normally.
My oncologist has ordered them twice as part of my pre appointment bloodwork. It seems.she follows it as well as the other numbers.
That’s good to hear, ANewMe2024. I hope my consultant does the same. Hope 2024 is revelationary for you, as your tag name implies. 😉
NewdawnAdministrator
My experience is GP’s never order them as they seem to view them as more advanced haematological information that is in the realm of the haematology dept.
As soon as my immunoglobulins demonstrated a drop, mine were done no less than every 3 months and have continued since. However, I do have significant hypogammaglobulinaemia.
I did have a haematologist early in my journey who tried to change them to annual but I soon managed to change to another haematologist! 🙄
It should be remembered that not all CLL’ers suffer with depleted immunoglobulins and unless an issue is identified, it’s not standard testing.
Newdawn
Thanks, Newdawn. Every 3 months sounds good. I just feel that it is useful to know how that part of the immune system is trending. I now realise that it’s not standard so thanks to you and everyone for answering my naive question.
Hi Newdawn
I have recently been told that I am Hypogammaglobiliaemia and had to have further blood tests , because my CRP levels were 32 and had severe symptoms, I’ve been told I might have to go in hospital for some immune booster infusion and just wondered if you had this done and was there any side effects as I’ve read sometimes these immune boosters can leave you with a lot of problems take care
🙏❤️
Ilkay
The IVIG infusions are usually done in the day unit and take a few hours. I had them monthly for a year (Privigen) and needed no meds like Benadryl beforehand. They caused me no issues whatsoever apart from a little tiredness and are a real benefit if you’re experiencing frequent infections.
If you have the chance for IVIG, take them without concern.
Newdawn
Thanks Newdawn
I will definitely as soon they call me to go and have
🤗
Fair enough. Covid rebound followed by chest infection, real need.
My CLL consultant used to check them yearly. For the past two years I'm also under the care of an immunologist, they see me every 6 months and they always ask my CLL doctor to get them ordered for me by them (they are fine with that but I have to remind them). Since that my CLL doctor stopped checking them for obvious reasons.
I agree that so much is unknown about CLL when it comes to other doctors & yes they could not be responsible for the results🤷🏽♀️
I am just curious how many who responded are on IVIG & was your immunoglobulin levels a big part of determining your eligibility for that treatment?
Poodle2, Jammin Me, NewDawn, ANewMe2024, Jm954, HopeME, albie58 & Emgeegee or Fogey are y’all on IVIG???
No IVIG for me yet. Eligibility for IVIG is driven by infections not Ig counts and fortunately I haven’t had any serious infections.
Best,
Mark
But some doctors treat prophylactically too, many started IVIG in W&W. I’m trying to find out the true rhyme or reason for my own defense to reject it & hopefully its not just based on my good federal insurance🤔
I know this doesn’t necessarily help you CoachVera because it relates to the U.K. but here are the formal clinical guidelines in the NHS which my specialist sent me governing under what circumstances IVIG can be administered. As it relates to us is covered on page 23. HopeME I’ve found that IgG counts are heavily factored in for eligibility and my haematologist actually stopped my monthly IVIG once mine were over 4. However, in the absence of serious and frequent infections, even very low IgG’s are unlikely to meet the criteria for infusions in the NHS.
igd.mdsas.com/wp-content/up...
It’s extremely difficult to be approved for here and of course we are not subject to insurance considerations.
Newdawn
Just to add to what others have said. I am in the US. Diagnosed in Feb 2016, local oncologist checked antibodies and all 3 were low. I don’t remember the numbers of my IgA or IgM but both were well below normal. My IgG was in the high 300s. But I had been treated for Mono and 5-6 sinus infections within the previous 12 months. He tried to get me approved for IVIG but could not get insurance approval. In the meantime I had been looking for a CLL specialist and found one 90 miles away. I was in Watch and Wait and my ALC was only 30+. My CLL specialist got me approved for IVIG in a couple of days and I have been on it every 6 weeks or so since then. I am unmuted with a TP 53 mutation. In August 2017 I started on one of the Ibrutinib /Venetoclax trials due to enlarged lymph nodes and extreme fatigue. After 3 yrs I was not MRD neg, so Venetoclax was stopped and I continued on Ibrutinib and am still on 140 gm daily. I am on Medicare and a Blue Cross Blue Shield supplement. My IgG has to be checked just before I receive each IgG infusion. I don’t know what the “magic” number is, but the lowest number of the “normal” scale used at my clinic is 635. My number at the end of each 6 week time frame is anywhere from 450 to 500. The times that I have gone longer than 6 weeks I have gotten infections. The last time it was viral encephalitis. I stay relatively healthy with 6 week infusions. I did get COVID but not until fall of 2022. I still get 1-2 upper respiratory infections a year and a UTI here and there. . I can get food poisoning at the drop of a hat. But interestingly, my neuts are at a normal level. My daily 140 gms of Ibrutinib keep all my bloodwork in line. But it does nothing for my immune system and probably makes it worse.
Insurance does play a big part in IVIG but not just the number. Many people have much lower levels than me but don’t have the illnesses to warrant getting it approved. Because I do feel well most of the time, I almost feel guilty getting my infusion every six weeks, but then I remember what happens when I don’t get it. Just another example of how everyone’s CLL is different.
Well thanks, BeckyLUSA, your story demonstrates how crucial immunoglobulin monitoring and control are. These infusions really keep you safe from all those infections. In UK we don’t have to worry about insurance, which is great, though the system is stretched to the limit. Good luck on your journey.
No don’t feel guilty, I’m in the USA too. You seem to meet the frequent infection criteria even with your IGG level. I stay double masked, isolate & take pride in how well I take care of myself so I don’t want it. I don’t get frequent infections & my IGG is 415 so under 400 is the IGG criteria I believe.
My body does not do well with additional stuff plus based on my SDA beliefs & my anxiety with so many donors, its a no for me. I follow the 8 Laws of Health which is basic stuff but it seems to keep me down to 2 infections per year if that if that.
SDA 8 Laws of Health
Great list! Have never heard this before. Keep up the good work!
Thank you for sharing that, CoachVera. I always feel better when I follow these principles. I was run down then picked up a flu last week after a heavy work period and I am awaiting my results and if I need an infusion. I always pay a price when I don't live harmoniously.
I am not. I'm not sure why my oncologist asks for these on my bloodwork routinely. I didn't realize that they aren't needed frequently. I will have to ask on my next visit.
I believe it measures your CLL progression & some doctors are safer than sorry. I rather have all the information & then you can gauge all your labs.
It's not correct that they are not done routinely. It depends on your consultant's views on the info he feels necessary.
I am on w and w stage 0. I think my oncologist is being a little overly cautious. All my bloodwork is within normal ranges.
Long may that continue for you.
I hope so but I'm on the beginning of my journey so I'm not so sure what that looks like yet.
I’m also near the beginning of mine, 2 years in but expecting BTKi treatment to start soonish. No idea what lies ahead. But who in life does? Just trying to learn. And just great to have support, info and friends here. And fantastic to have non-chemo targeted treatment options when W&W comes to an end. I wish you well.
I wish you well going forward as well.
I have been on IVIG for 14 cycles, had my last one a couple of weeks ago. I was put on them following my CAR-T in May 2022. Do the maths and that doesn't add up as it took nearly six months to get approval. In the UK IVIG (IGs) is not an automatic thing is my understanding, due to it's cost. We will discuss whether to restart it at my consultation in March.
One interesting effect of the IVIG - for a number of years (maybe five) I had a cough, it wasn't bad and it was occasional. Maybe two or three times a day at most. I just coughed once and it was a dry cough. I'd talked to my GP and my CLLteam several times and everybody was puzzled by it. Went through CAR-T, when it did cause concern by the on-ward team and they made me have an x-ray, needless to say nothing.
The day after my first IGs no cough and it has not come back!
Best to all, Robin
Hi Robin:
I think CoachVera55 was speaking to immunoglobulin testing not IVIG? I’m glad you are doing well after Car-T!
Best,
Mark
Hi Mark,
Aaaargh, my bad. Was reading this too early in the morning, saw reference to IVIG and as not uncommon I went off at a tangent.
Apologies, Robin
No you were right Oleboyredw. HopeME I was asking about IVIG based on IGG levels, since I assume that would be one of the reasons to watch your levels but of course there are probably many reasons to monitor those levels. Thanks for responding
No, I’m not on IVIG. Still on W&W but have had rebound Covid and a long-term chest infection so wanted my immunoglobulin levels checked.
Things in the CLL world are moving positively so fast these days. It’s unreasonable to expect a general practitioner to have up-to-date knowledge. I wonder how annoying it can be for a GP when his CLL patient knows more about it than him?
I’m sure its very annoying for GPs. My local Oncologist was done with me when I read from the Zanubrutinib medical pamphlet that I needed antibiotics since they recommend prompt, proper & even prophylactic antibiotics with there confirmed ER CT Scan reading of Pleurisy missed & progressed to Left Pleural Effusion, Pneumonia vs Aetelectasis. They never prescribed antibiotics so how was I suppose to recovery with stage 4 CLL Leukemia & newly placed on that BTKIs.
She made it her business to let me know that I should go to MSK. I responded if she wanted to work there then she should but in my weaken state I was going to SIUH Northwell 15min away & its where I get my meds for free. I added with this brand new center that they are about to open, if they can not care for 1 black women then they should shut it down now.
I found my CLL Specialist 45min away in NJ @RWJBH & she said that I should just see her because I have alot of questions & my case is complicated. I just reminded her that I was coming here for my convenience & for my free meds. I now just print out the other doctors information for her since I, an RN of 32yrs words mean nothing & that’s how we roll. Frustrating doesn’t even scratch the surface. So imagine my surprise when she says that she can see that I am doing better & my mood is better. What mood should I have when I know you don’t give a damn about me or providing proper care? I’m just seriously on my high vibration frequency these days & not allowing anyone to steal my joy. Plus I know how GOD deals with me, He’ll let me prepare a feast in my enemies presence 🤷🏽♀️
I will get proper care & that’s on periodt!
Tough times, good attitude. Best of luck.
HI Coach:
I’m calling you out of bounds on this one. Your first doctor was giving you good advice when suggesting you should consider being seen at MSK. In 2022 MSK was rated the 2nd best cancer center in the US behind MD Anderson by US World News. Being mentioned in the same breath as MD Anderson is a compliment as it is arguably the finest cancer treatment center in the world. I realize it isn’t the most convenient location for you but perhaps you can utilize a hybrid approach for your care? For example, consider seeing a specialist at MSK once or twice a year while receiving routine treatment and blood tests at your local institution?
Best,
Mark
Its okay HopeME, many don’t agree with me until its spelled out for them & I am accustomed to it lol but I know what I need… I got diagnosed at RWJ went to a SI group then when I got Medicare I went to MSK. I wasn’t impressed because he didn’t talk much & he is the same MD I see on panel discussions. I got the sickiest I’ve ever been going there. They offered mask & gloves but haven’t never using them in W&W, I passed on the offer. What a bad decision 🤢The drive there & back made me nauseous, I just got bad vibes from that place I’ve visited people there, even stayed the night with my friend, but its a no for me.
I came back to my SI Group & when I hit stage iv I went to SIUH Northwell. My previous doctor of 10yrs office was in a house, on a residential block with no good parking & they had no medical portal. I left when she herself got Covid, it was a tight waiting room & just antiquated.
The male doctor at SIUH Northwell was a Cowboy with a GOD complex & would not listen to me. He got me on the Zanubritinib after 6 months of bullying me & I mean very unprofessional like behavior. One time he stormed out the room yelling ‘I don’t get anymore money whether you start treatment or not’. But somehow I thought once I said yes, things would calm down. Well they calmed all the way down because when I sat in front of him with active chest pains the day after my ER discharge, he did absolutely nothing. My CT Scan at that time said ‘Bibasilar Subsegmental Dependent Aetelectasis’ when it was clear previously. No assessment, vitals, referral or transport me back to the ER. He simply said that ‘Chestpains is not a known side effect’ as if we were having a classroom debate not like my life was in grave danger. By the next day I had to return to the same ER 2 days after discharge with Left Pleural Effusion, Pneumonia vs Aetelectasis seen in a second CT Scan. Had they dealt with the Pleurisy even with Steroids perhaps it could of reverse the damage but leaving my lungs to rub together almost killed me, I could not take deep breaths but still having to tell so called professional what to do was beyond incompetence it was criminal. Only GOD saved me🙌🏾
She was part of his team & I elected for her to take over when I fired him. I understand now that yes you can get a second opinion but not with the same team🤦🏽♀️ Her insistence to go to MSK was her way to get out of the hot seat. My case only became complicated by everyone ignoring the elephant in the room. I had a meltdown in her office after becoming breathless trying to beg for antibiotics, reading her the Zanubritinib pamphlet & she just said I had to see Pulmonary which I did before her. So that August 2, 2023 is when it came crashing down in front of me like a building collapsing on my head that none of them would help me. I had a full fledged anxiety attack, I couldn’t breathe, the tears were pouring down my face uncontrollably & I was expressing my anger ‘Y’all are really trying to kill me’. I was on only 80mg of Zanubritinib because after 4 days off I was going into Rigors. But even that 1 pill per day was like a 5lb weight sitting on my chest. Even with the steroids ENT prescribed & the Muscle Relaxant from my 3rd ER visit
It was a complete nightmare & I submitted all the documentation to the Patient Experience Director & she said as one nurse to another ‘heads will roll even if you hear nothing about it’. Pulmonary had a CT Scan that showed Parenchymal Scarring & PFT that showed Moderate Chest Restriction, none of which was conveyed to me. The problem was a side effect of the medication & the solution was antibiotics for me but they acted as if I was asking for heroin.
Needless to say its behind me. What I do now is submit other doctors’ report for the Oncologist or CLL Specialist to see what I am saying. I no longer negotiate with terrorist, I tell them what it’ll be or what it won’t be. I do that because I have 32yrs of Critical Care Experience & My Body never has lied to me once. I told them 1yr before they found the CLL that something was very wrong with me the Lymph Node had to pop out of my neck for them to hear me. I’m not necessarily book smart but extremely intuitive, if that makes sense.
Sending me to MSK was like taking the abused child out of the house instead of the Abuser. All I ever require is for a doctor to do their job & listen to me the patient. I never even tell someone that I am a nurse, they will ask me after I explain something to them. I am adjusting well to being just a patient & exercising my Patiet’s Rights. I have the final say because I will have to deal with the consequences of my choices anyway. I fully rely on GOD not doctors! To err is human…
See my reply to Altindal22 above.
Yes my IgG (barely over 4) and frequent infections qualified me for IVIG for a year during my treatment.
Newdawn
My IGG level is now 364 and I have a periodic annoying chronic sinus cough producing very thick clogging mucous. I will get Ivig this Tuesday. Cough may then improve. My plan is to repeat Ivig every 3 months to hopefully reduce cough, mucous & sinus issues. Igg again drops below 400 after about 3 mos. Hope my plan is good. My cll hematologist nicely cooperates. Bob
Hope it helps Bob. If you feel you require more frequently than every 3 months, push for it!
IVIG really tamed my persistent infections especially respiratory ones.
Newdawn
Thanks much for your reply. I'll try every 3mos. It's a balance to avoid 3 hr Ivig & excess cost. If needed may retry every 2 mos based on results. Thanks again, Bob
No, I have never had IVIG
mine are done every time I see my hematologist and/my CLL specialist so about 4 times per year.
I have monthly bloods Inc Immunoglobulins, all part if my remission monitoring.
I have three-monthly blood tests for my haematologist but those don't include immunoglobulins. Those are only tested when the Immunologist asks for a specific serum test to check that the volume of IgG I take subcutaneously every week is at, below or above the target level so about twice a year.
I am in France and my immunoglobulin levels are checked as part of the extensive blood analysis I have to do before seeing my haematologist twice a year. Many other things are also checked, such as vitamin D and B12, calcium, iron, potassium, magnesium,cholesterol, etc. etc. etc. I am beginning to realise that they may be more thorough here in France then in many other places.
Very interesting. Having lived myself in the south of France for 8 years, I think you’re right. In UK, I get all the other things you list done automatically (and, unlike in France and elsewhere) for free. Best wishes. I envy you living there!
Yes, I've heard that public health is very good in France. I know Spain and it's good there and in many European countries. In Barcelona they really care about Leukemia treatment.. (Jose Ferrer, the Tenor set up a foundation there). I've never been treated outside of England and my consultant here tests my Immunoglobulins- G, A, and M before every consultation. It gives him valuable information. There are excellent Doctors here but, as unlike in most of Europe, the NHS is not part funded by contributions... So there are limits on some procedures.
I am very lucky in that I do not have to pay anything for my CLL health care. As a CLL patient I get 100% cover of all treatments, including my dermatologist who I see twice yearly, and on top of that the state pays the taxi fare to these consultants and other services. I feel very blessed by that, especially since I am not a French national although resident here. I have lived for a long time in the UK but I would be worried to return there with the present problems with the NHS.
That’s amazing! I don’t think that’s typical for the average person in France. But it sounds great! I had something similar while in France but only through my work. I have no complaints about the NHS. It’s slightly broken but still miraculous.
9 years on Imbruvica with high risk cll, having blood test every 6 weeks. If IGG is less than 500, I have IVIG. Ivig given about every 12 weeks. I feel great! In USA.
I cannot speak directly about your specific tests as I only joined this forum to educate myself after my (late) best friend from the University of Hertfordshire (then Hatfield Polytechnic developed lymph cancer.
About a dozen years ago I asked my GP for a Lp(a) blood test to check for lipoprotein as all the males in the male side of the family had died prematurely of heart attacks caused by narrowed/blocked arteries . In 2018 I had a quadruple bypass. More recently I askd for HbA1c and Kidney Function as I am now on Libre CGM and some earlier medication had knocked my eGFR. It was refused because I had had them four months earlier despite them being a moving target! . I might ask at the hospital in three weeks. Good luck in getting it
P.S. Just spotted you are in the UK. I think some GPs are cost cutting o blood tests. ☹️
Hi!
I had the same experience here in Canada. Asked my GP for IgG, IgA and IgM, and she said that those tests were the hematologist’s territory. I hadn’t had repeated infections, but felt like I needed more information to make decisions about social events where I could be exposed to infection sources. Eventually (2024) the hematologist ordered them after 4 years of W & W.
Thanks, New-bee-cell. Exactly my experience. Although I have had infections, I wanted a vague picture of my immune system status so that I can make everyday personal decisions about lifestyle, social events, concerts, travel etc. I explained this to my GP but he needs my haematologist’s instruction. I felt for the first time that the GP wasn’t empathetic. Just bureaucratic. In my opinion, while no one expects a general practitioner to be an expert on CLL, he should understand the need for a CLL patient to know how his/her antibodies and immunity are being affected. For these things determine one’s state of mind and one’s freedom to try to live a semi-normal life. And having a disagreement with a GP just isn’t helpful.
Best wishes and thanks for making me not feel alone!
Like you, I'm monitored by an NHS haematology unit, and the consulting doc or nurse writes the menu for the next set of labs. Last consult, I requested separate Igs, which were last done 2 years previously - notwithstanding very low IgG and A. In between, we just have total globulin values.
In the past my GP has requested blood tests when I've presented with one or other chest infection, but Igs were not included.
It would be great if the CLL consultant would write the menu for the next set of bloods. I envy you and will make the request. Thanks.
I visit my oncologist / hematologist and before each visit they draw blood and he gets the results. My visit before my last visit I asked about these tests and they didn’t draw enough blood to do the tests. At my last visit they did the tests. I think it’s good for us to know how we stand with immunity and which areas are weak. I don’t ask my GP because for a year after I felt swollen nodes, she was oblivious. She didn’t even get the CBC. My GYN ordered it and all the red flags popped up. Ultimately she requested an ultrasound and then a biopsy. The oncologist sends her the reports since she referred me to him. I see her for my blood pressure routinely.
Because my haematologist is 100 miles from me, my bloods are taken locally here a few days before the consultation. Different nurses do the sampling and it seems that there are no written instructions for the specific tests needed, I’ll talk to my CLL consultant this week. I agree that it must be good for us to know our immunity status. Sounds like you need a better GP. Bestest.
Yes my GP is awful. Had she continued getting my annual complete blood work, we would have better idea when the lymphoma started. When my other doc retired I told her to request it annually and she just mouthed off about my insurance not paying for it. I told her my insurance at that time was the best. With any of these doctors we have to advocate for ourselves .
Hi Fogey, j was diagnosed five years ago and every three months for those five years and now and I am now on Acalabrutinib, my oncologist has checked my immunoglobulins. I have never had my GP. check them. I am in Ontario Canada, so maybe requirements are different from the UK. Why isn’t your CLL doctor checking your immunoglobulins?
I live 100 miles from my haematologist. Bloods are taken locally in my GP’s surgery a few days in advance of the consultation, which is usually by video or phone, and the consultant has the blood data in advance (I occasionally visit the consultant in person). I think that there is a lack of information from my consultant to my GP about which tests she wants to see done and I will sort that out this week. Excellent that you get yours done every 3 months. Best wishes and thanks.
Oh, I understand your situation now. Didn’t read all the replies. I am sure they will sort it out between them. All the best.
Thanks.
This cancer is so complex that I don’t even try to understand my test results, if my consultant says they are fine then that will do for me and I’ll go for a pint or two to celebrate !
There’s a lot to be said for your approach. I think that those of us who investigate every detail and try to understand everything are prone to worrying too much. I like your style!
I have taken inmoglubin tests every time I check my blood I don't see the problem
My Hem/Onc runs them every month. I receive IVIG every 2 mos
I had my Immunoglobulins tested routinely until July 2023 , results always about half the standard range - then this and several other factors in my blood test had testing stopped, probably deemed non-essential .
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