My CAD symptoms were hidden, but I knew something was wrong

I haven’t felt well since early February. Many days I haven’t wanted to get out of bed. Even pushing the covers off or pulling them over me takes a gargantuan effort. Healthcare providers have told me I don’t look anemic, that I seem fine, but I knew my blood work would tell the truth.

During my recent annual checkup to monitor my cold agglutinin disease (CAD), my hematologist looked under my lower eyelids for anemia and jaundice, but saw no such signs. “Let’s see what the IgMs indicate,” I said.

IgM, or immunoglobulin M, is a type of antibody the immune system produces to help fight infections. In CAD, self-reactive IgM antibodies, known as cold agglutinins, attack red blood cells at cold temperatures. Thus, higher levels of IgMs suggest that CAD is more active and that treatment is needed.

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What my blood work revealed

I’d begun to think about stretching out the interval between my hematology checkups, but an incident on Feb. 4 changed that. I was exposed in Montreal to a very short but extremely cold blast of frigid air. Things haven’t been the same since. Part of my description to my doctors is that I’ve been experiencing almost the same degree of CAD symptoms as I did before my diagnosis.

I left the office feeling tired and frustrated. I knew something was wrong. Why couldn’t others see it, too? I try to look as nice as possible in public. Perhaps if I weren’t so meticulous, but presented the way I felt, others would see that something is wrong.

My phone rang the day after the appointment. Although I have been assured that this isn’t necessarily the case, I tend to think that if the office calls, everything is fine, but if my test results indicate a need for intervention, the doctor calls. It was the doctor calling.

I felt vindicated! My blood work showed two concerning areas. First, my hemoglobin was down to 8.8 gm/dL. For reference, normal values for me range from 11.7 to 15.5 gm/dL. That explains the tiredness and dizziness I’ve been experiencing.

The second concerning value was my IgM level, which was 1,520 mg/dL. Normal levels are 40-250 mg/dL, and this result was a big jump from the previous year’s value.

Being vindicated didn’t ease my frustration, though. CAD is often called a hidden disease because there are few, if any, outward signs of how sick we are. Even my physicians couldn’t see it! Yet I can barely walk from an office vestibule to the treatment area. My breath comes and goes for no discernible reason.

What this means in upcoming months

I will now need to make some adjustments. I’m taking a medical leave from work and remaining in Alabama, where my doctors are, but my husband will remain at our home in Papua, Indonesia, to continue his teaching. My nephew shares my house here in Alabama, and he said my stay won’t be a hardship. It is summer here, and a friend has a swimming pool I can use. I am thankful for the support network I have in place.

My dad is quietly happy about this. Of course, he isn’t pleased that my health has taken a downturn, but he is glad to have someone to take out to dinner. I can also help straighten out his software when his computers glitch. He has always liked to have someone to lavish care upon.

In talking with my hematologist over the phone, he sounded upbeat. The confidence in his voice made me think we’ll be able to easily pinpoint and overcome this current challenge. In fact, I’m sure we will. I can’t help thinking, however, that his optimism would diminish somewhat if he were on the receiving end of my upcoming bone marrow biopsy. Ouch!

Note: Cold Agglutinin Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cold Agglutinin Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to cold agglutinin disease.