I have cold agglutinin disease (CAD), a rare form of autoimmune hemolytic anemia, diagnosed 2 years after a gallbladder attack. The thing about CAD is it really isn’t all that apparent, aside from my yellowish eyes. Just by looking at me, you wouldn’t know that my body destroys my red blood cells—sometimes at an alarming rate.
My hemoglobin (HGB) has been steady in the 10s for some time now; because of this, I experience low levels of symptoms. The main sign I have is slightly darker than normal urine and a jaundiced appearance in my eyes. I experienced severe symptoms mainly during the first few months of my diagnosis and when I had gotten too cold or sick with a stomach virus, COVID-19, or other normal viruses. These viruses kicked off severe exasperation.
The symptoms I am speaking of are worse than terrible. The fatigue you feel is beyond any level of fatigue I have ever experienced. I have had the flu, but it is nothing like that. It is a wave that begins in my arms. I know it’s coming over me because suddenly my arms feel a bit heavier and then heavier to the point where it is hard to lift them up to even grab something.
My heart begins to pound. I could just be sitting on the couch and my heart feels like it’s going to jump out of my chest. Then this very weird fog envelopes my entire head followed by pressure so severe that I press on my head to counteract the pain. The problem with the brain thing is the neurologist thinks it’s from thunderclap headaches, but CAD patients say it is normal. They say those headaches come from a lack of oxygen when you are experiencing hemolysis. I lean toward what other CAD patients say because they experience the same symptoms as me.
Read about experimental therapies for CAD
Sometimes if it’s cold enough I will experience joint pain and a myriad of other annoying and sometimes painful symptoms. All of this is due to the cold. Yes, the cold. It is so insane to me that I would be, for a lack of a better way description, “allergic” to cold.
Think about that for a second. Here in the Northeast, we have seasons, so 6 months out of the year it is colder outside than I can handle. That blows my mind. I went my entire life without issues due to the cold and now my body has decided, “nope, no cold for you.” And it doesn’t stop there, it’s literally anything cold. That means 6 months out of the year no cold beverages and no cold food of any kind.
All these things will kick off the symptoms that I will do anything to avoid. It is so hard to paint the picture correctly so people can completely understand just how bad it feels when that happens. I do my best to avoid this from happening. Sometimes I just can’t. You can think you wore enough clothing when you were out, or the heat was high enough in the car, etc., but your calculations can be off.
It is only when I start to feel sick, experience dark urine, and my head begins to squeeze, that I realize I must have gotten a cold and I didn’t feel it. To me, that is the craziest thing of all—you can get cold without even realizing it. Over the past 2 years, there has been a telltale sign that I have been able to identify. When I have gotten cold and I didn’t realize it, I will begin start to feel warm all over. I will suddenly need to pull all the extra layers off. I can only describe it as hot flashes.
The assumption doctors make is that, due to my age and gender, it is in fact hot flashes, and in my case, that certainly could be true but that doesn’t change the fact that male CAD patients experience it as well. So, doctors need to stop assuming that.
The long and short of it is that what I have is no fun. If you have CAD, get a notepad to write down your symptoms, try to identify when it occurred, why you think the symptoms occurred, and what were you doing.
I have been keeping track of the temperature outside. This summer was in the high 90s and that was perfect for me. That’s obvious, but what about the 70s? I was still great then too. Now it’s been in the 60s, and so far so good. It is best to know what temperature inside or out you can handle without experiencing symptoms. When you identify that temperature, you will be prepared to win the battle for the moment.