Cold Agglutinin

[rcusher]

Another test in my continuing saga. I am now being tested for cold agglutinin. Dr's note below.

"A prior DAT was negative, but a second one conducted on Feb. 14 was positive. Subsequently, a monospecific DAT was performed, which was positive for CD3 and negative for IgG, suggesting the possible presence of cold agglutinin".

My next bloodwork will now include a thermal amplitude test.

Any thoughts?

This test is probably being done because I thought that I might have Raynaud's.

Jack

[Kwenda]

Raynaud's can be annoying, is rarely very serious, and can be caused by both temperatures as well as repetitive hand actions.

There are numerous types of Raynaud's, and the genetic reasons for the inherited type is being researched. Mine would appear to be inherited.

Beth Mullin on another forum recently provided some excellent web page links.

my.clevelandclinic.org/heal...

Note that a full test can be very complicated for any laboratory and the following web page provides information.

journals.sagepub.com/doi/10...

You also might find this web page useful.

coldagglutininnews.com/ther...

Dick

[cajunjeff]

Rcusher, you might consider discussing the possibility with your doctor that he suspects you have hemolytic anemia (AIHA). I shared some of my experience with AIHA on your pnh post.

To my understanding, the DAT (direct antibody test) you took is also known as a Coombs test and is used to detect AIHA, an autoimmune disorder where your body attacks your hemoglobin. You did mention you had low hemoglobin, and AIHA would certainly cause that.

I am not sure why the Raynauds test is being done, other than of course to rule it in or out. Are you reporting coldness or numbness in any extremities? That might suggest Raynauds. There is some correlation between AIHA and Raynauds, but thats over my head.

With a positive DAT/Coombs test, low hemoglobin and low haptoglobin, that sure sounds like hemolytic anemia to me, but I don’t know how low your levels are. My hemoglobin fell to 7 at some point with my AIHA.

But I sure dont want to play doctors on here, I am not qualified to truly understand all this. You may want to ask your doc if he suspects AIHA. If it is, the next question is what’s the plan to treat it if it needs treatment. The pirto you discussed taking might also help treat your AIHA, if you even have AIHA.

Here are a couple articles that might be useful to you:

myaihateam.com/resources/wh...

my.clevelandclinic.org/heal...

[rcusher in reply to cajunjeff]

FYI....latest test results; cold agglutinin thermal amplitude test.

" No clinically significant cold agglutinin at 20 degrees C. "

Don't know what that really means but I guess I will find out in 2 weeks at my next appointment.

Jack

[Jm954 Administrator]

There are two types of positive DAT (IAT) , cold and warm.

Warm haemolysis general shows IgG and C3d on IAT and is the cause of the usual type of AIHA seen in CLL patients.

Cold agglutinin disease, is as it says, affects the extremities and is very painful at the fingertips as the agglutinated red cells block the capillaries and cause pain. Typically the DAT shows IgM and sometimes complement. The complement is important because the red cells generally do not haemolyse unless complement is on them. The cold IgM type of agglutination does not usually involve complement and the red cells un-agglutinate when they become warm as the cold antibody falls off them in warm temperatures as they circulate back into the warmer body.

The thermal amplitude test will examine the range of temperatures that the agglutination/haemolysis occurs at and should be useful clinically. Raynaud's does not always involve cold agglutinin disease though.

Hope this helps

Jackie