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Just Diagnosed with Cold Agglutinin Disease

Posted by xfitgurl13, cold agglutinin disease @xfitgurl13, Oct 17, 2025

Hi everyone, I’m hoping to connect with anyone who’s been through something similar.

After years of odd lab results (low red blood cells, enlarged cells, and repeated notes of “cold agglutination”), I was recently diagnosed with Autoimmune Hemolytic Anemia (AIHA), more specifically Cold Agglutinin Disease (CAD). Basically, my immune system attacks my red blood cells, which leaves me dealing with fatigue and low endurance. This isnt iron deficiency anemia. My iron levels are sky high.

For context:
Age: 60
Height/Weight: 5’8”, ~140 lbs
Nutrition: typically 45% carbs / 30% protein / 25% fat
Training: CrossFit 5-6x a week, though fatigue has made me scale back recently and avoid heavy cardio

My questions for the group:
1. Has anyone else here been diagnosed with AIHA or CAD? What treatments worked (or didn’t work) for you?
2. For those managing non iron deficiency anemia or autoimmune conditions, did you adjust your training or nutrition to help with energy and recovery?

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

Profile picture for Becky, Volunteer Mentor
Mentor
Becky, Volunteer Mentor | @becsbuddy | Oct 17, 2025

@xfitgurl13 Welcome to Mayo Clinic Connect! Question: how has CAD affected your training and fitness programs? What did you notice before you got a diagnosis?
Members will see your discussion tomorrow (it may already be tomorrow for some members depending on where they live!). I will try to find some members who also have CAD.

REPLY
1 reply
Profile picture for xfitgurl13, cold agglutinin disease
xfitgurl13, cold agglutinin disease | @xfitgurl13 | Oct 18, 2025

I noticed a substantial decline in my cardio capacity, endurance as well as terrible fatigue.

Workouts and movements that I normally do would leave me gasping for breath. At first I thought it was a combo of new programming at my CrossFit box, working 2 jobs and needing to eat more.

Since seeing the hematologist at the end of August, my numbers have further tanked. I only do minimal cardio now and focus on strength and moving my body.

REPLY
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laura1970 | @laura1970 | Oct 18, 2025

I remember in residency (long time ago) we treated this condition with plasma exchange in hopes of ridding the body of the malfunctioning antibodies. Not sure if it is still used. You could ask

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xfitgurl13, cold agglutinin disease | @xfitgurl13 | Oct 18, 2025

I can ask about this. Thank you!

REPLY
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vlong | @vlong | May 2 1:19pm

Hello,
I have a similar story. I am also very active, avid outdoor rock climbing and running., and diagnosed at age 49 in 2023 after I asked for blood tests because I was feeling unmotivated and wasn’t recovering from workouts. Same symptoms as menopause or low thyroid hormone. But like you my bloodwork was really strange so after lots of tests was finally diagnosed with CAD.
Despite being very diligent about cold temperature, I find that my symptoms are triggered by cold viruses, severe hay fever, or inflammatory responses. With mild symptoms and moderately abnormal RBCs I find that I can’t train properly but I can feel better faster by doing regular light cardio, like on an elliptical machine.
The typical advice for low RBC just doesn’t make sense for because of the high iron levels that you point out.
I have found very little information on how CAD affects athletes so I was happy to see your post, and I hope your management is going well.

REPLY
1 reply
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virb | @virb | May 3 5:55am

Hello,
I also have experienced similar symptoms and history. I was diagnosed a couple years ago at age 48 after many confusing tests and doctors. While very active, I have had to change my exercise to mainly indoor and from cardio to weight training as not only I was getting out of breath fast but the cold weather was impacting my fingers and feet too much. I was treated with rituximab and it really helped for a year and a half. I will have another course early fall hopefully so I can be ready for the next cold temperatures.
Good luck with your CAD!

REPLY
1 reply
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swalex | @swalex | May 4 6:16am
In reply to @virb "Hello, I also have experienced similar symptoms and history. I was diagnosed a couple years ago..." + (show)
Profile picture for virb @virb

Hello,
I also have experienced similar symptoms and history. I was diagnosed a couple years ago at age 48 after many confusing tests and doctors. While very active, I have had to change my exercise to mainly indoor and from cardio to weight training as not only I was getting out of breath fast but the cold weather was impacting my fingers and feet too much. I was treated with rituximab and it really helped for a year and a half. I will have another course early fall hopefully so I can be ready for the next cold temperatures.
Good luck with your CAD!

Jump to this post

@virb

About Coronary Artery Disease (CAD)
https://www.cdc.gov/heart-disease/about/coronary-artery-disease.html

REPLY
Profile picture for Becky, Volunteer Mentor
Mentor
Becky, Volunteer Mentor | @becsbuddy | May 4 6:03pm
In reply to @vlong "Hello, I have a similar story. I am also very active, avid outdoor rock climbing and..." + (show)
Profile picture for vlong @vlong

Hello,
I have a similar story. I am also very active, avid outdoor rock climbing and running., and diagnosed at age 49 in 2023 after I asked for blood tests because I was feeling unmotivated and wasn’t recovering from workouts. Same symptoms as menopause or low thyroid hormone. But like you my bloodwork was really strange so after lots of tests was finally diagnosed with CAD.
Despite being very diligent about cold temperature, I find that my symptoms are triggered by cold viruses, severe hay fever, or inflammatory responses. With mild symptoms and moderately abnormal RBCs I find that I can’t train properly but I can feel better faster by doing regular light cardio, like on an elliptical machine.
The typical advice for low RBC just doesn’t make sense for because of the high iron levels that you point out.
I have found very little information on how CAD affects athletes so I was happy to see your post, and I hope your management is going well.

Jump to this post

@vlong @virb. @swalex Just so everyone is aware that CAD-cold agglutinin disease- can also refer to coronary artery disease. Please everyone be extra careful when responding to someone who says refers to CAD. Ask which disease they have so you can answer appropriately!

REPLY
Profile picture for Becky, Volunteer Mentor
Mentor
Becky, Volunteer Mentor | @becsbuddy | May 4 6:18pm

@xfitgurl13 It took me awhile to untangle your CAD from someone else’s CAD! I think I’m untangled now! To make sure that we don’t have multiple tangles and knots, could you write out what CAD means in the autoimmune world after your name? @your name, cold agglutinin disease. Please don’t feel bad about the mix up. It was probably me and half the world! You can be the heroine by the fix I posted! OK? OK

REPLY
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hazelschmidt107 | @hazelschmidt107 | May 6 9:52am
In reply to @becsbuddy "@xfitgurl13 Welcome to Mayo Clinic Connect! Question: how has CAD affected your training and fitness programs?..." + (show)
Profile picture for Becky, Volunteer Mentor @becsbuddy

@xfitgurl13 Welcome to Mayo Clinic Connect! Question: how has CAD affected your training and fitness programs? What did you notice before you got a diagnosis?
Members will see your discussion tomorrow (it may already be tomorrow for some members depending on where they live!). I will try to find some members who also have CAD.

Jump to this post

@becsbuddy I’ve had CAD for quite a few years now. Not doing to bad with it but lately I’ve had no energy.

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