Is Immunoglobulins Blood Testing Needed?

[Drago1941]

My hematologist in Canada does not requisition Immunoglobulins Blood Testing. I've been diagnosed 10 years ago and am currently being successfully treated with Calquence. In the past 10 years, I've never had the test done. I’m wondering what triggers the test for immunocompromised CLL patients and should I be questioning my doctor about this? What is the experience of others especially during Covid 19?

[lankisterguy Volunteer]

Hi Drago1941,-

My CLL expert doctor ran the tests, but he works in research, and never has taken action on the data.

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Len

Immunoglobulin results

[AussieNeil Partner Administrator]

Arguably there may be no need to test for IgA, IgG and IgM if you don't have more frequent, more severe or longer lasting infections, but I would consider it to be useful to do as a baseline test soon after diagnosis. Follow up testing could then be scheduled based on how low the counts were, or if infections became more of a problem.

Australia has a similar universal medical health system to Canada, in fact our Medicare system was significantly influenced by the Canadian system when ours was implemented decades ago. My specialist has kept an eye on my immunoglobulin counts, but a severe degree of immunocompromise has been the hallmark of my particular version of CLL.

Neil

[Drago1941 in reply to AussieNeil]

Thanks Neil. As I have had no repeated infections of any kind, then would it be safe to assume that this is the reason the hematologist is not asking for a Immunoglobulin Blood Test?

[AussieNeil Partner Administrator in reply to Drago1941]

Yes, because it's only when you have both very low IgG (depending on where you live typically below 4 or 5 (400 or 500 with some labs)) and repeated severe infections, that you qualify for what can be life changing IgG infusions. Effectively that transfusion of antibodies from healthy blood donors helps you fight off what could be life threatening illnesses.

Neil

[HopeME]

Hello Drago:

I think this question is similar to should a BMB be done at diagnosis, should you find out if you are unmutated or mutated at diagnosis, etc or should you defer until treatment is needed. There are two schools of thought here. Wait and see what happens or do upfront work and be prepared for the worse case scenario. I didn’t have a BMB or find out if I was mutated or unmutated at diagnosis ( I had no clue these tests existed at the time) and my disease hit me hard and I was rushed into a bad treatment option, needed blood transfusions, etc.

The same dilemma is present with immunoglobulin testing. Wait until you are blindsided by a severe infection or know upfront what your baseline immunoglobulin levels are and be prepared. Given my history, I like to have as much info as possible so I’m prepared. As a result, I have asked for immunoglobulin testing on a periodic basis. I now know my immunoglobulins are low despite the fact I have never had a bad infection. However, I am ready to react should I get an infection. In my opinion more knowledge is better than less knowledge. I’d ask for the test but again it is a personal decision and there is no right or wrong answer. I hope this helps.

Best

Mark

[Drago1941 in reply to HopeME]

Hi Mark,

Thank you for your thoughtful response. I agree with your assessment and will be asking for the immunoglobulin blood test to have an idea as to what my immune levels at at. Perhaps, it may even be of interest to my hematologist.

[HopeME in reply to Drago1941]

Drago: Good luck! By the way, your picture looks peaceful. Is that your home? I bet there is some good Bass fishing in that pond?

[Drago1941 in reply to HopeME]

I wish it was my home and there was Bass swimming around in the pond! No such luck, but glad you enjoyed the picture.

[morepork]

My IG's are tested monthly as part of my regular blood tests as ordered by the haematologist.

[KMac1969]

Maybe it's regional?? Mine have been checked from the very beginning of diagnosis. I have a rather progressive form, maybe that was the difference. I started IVIG infusions in Nov 2019. Get them every 4 weeks.

Maybe you are very stable and probably have shown no issues with reoccurring infection.

[pragnar]

Must have something to do with Canada healthcare system. When I was in Canada they never tested my levels after I had chemotherapy and later getting sick with cold sores etc. After moving to USA (I am dual citizen) They tested me after the first visit and it was at the bottom.

[Rosiehiker]

I live in Ontario and have been watch and wait for 8 years with my lymphocytes and platelets changing slowly. My igg gets checked once a year. It is 5.54 so somewhat low. I tend to get sinus infections and bronchitis so it is the test result that tends to be the most concerning as it is the one that also tends to decline each year.

[Drago1941 in reply to Rosiehiker]

Hi Rosiehiker,

I guess the sinus infections and bronchitis trigger the need for the annual immunoglobulin blood tests. Thanks for letting me know.

[JigFettler Volunteer]

Like AussieNeil says...

I am post FCR yr 3. My Lymphs are super low and my immunoglobulines are too.

In the absence of infection no supplementation or re test planned by my dream Haem Team, unless I get infections.

Truth is - I get my bloods done by a Family Drs nurse - and I merely ask her to insert Igs, and other stuff from time to time - so I get updates.

I get no infection to date. Probably have hard working T cells.

On the day when when my wife asked for her 3rd Lateral Flow Test!! Vague sore throats. Neg again.

Jig