Cold agglutinin disease (CAD) comes with some of the weirdest symptoms—some I didn’t even know about until recently.
As I have mentioned before, the spring brings its own set of issues. Sure, it’s warmer out but the inconsistency in temperature makes CAD difficult to manage. I know that in a month or so, when the temperatures start to even out, I will adjust and be back to normal. At least, this is how the pattern has been for the past couple of years.
The most frustrating part is the readjustment period. It takes time and leaves me feeling off for a while. This past week, I didn’t realize I was experiencing hemolysis until I was walking around and my legs felt a bit weak. Not enough to call it a problem but enough to make me wonder, did I eat sufficiently today or was I sore from yoga? So, I ate more food in hopes that it was just low blood sugar and stopped yoga. This went on for a couple of days and then it finally dawned on me that I must be hemolyzing.
That’s one of the problems with CAD, at least for me. Unless I am experiencing the common symptoms such as rapid heartbeat and fatigue that just come on like a crashing wave, or dark urine, some symptoms go unnoticed.
Read more about comorbidities in CAD
With the spring also come seasonal allergies that are more of a nuisance than anything. The heavy head, fluid in my sinuses, running nose, and sneezing are all common for me but there is a symptom associated with allergies that is also a symptom of CAD, which is ringing in the ears. Tinnitus is something I have had on and off for years, and to be honest, I just thought it was something we all get. I never thought much about it.
This past week, just for a couple of days, I was feeling off. I assumed it was allergies and the fact that I needed to eat more. One night, my heart started to pound. It was right before bed, and my heart rate was in the 90s, occasionally crept up to 103, and then went back to the 90s. This was my resting heart rate. At this point, I still thought maybe it was something I ate, perhaps too much sugar or salt during the day, stress or maybe it was because I drank soda.
This type of thing has sent me to the urgent care or hospital more times than I can count. If you ever experience this while lying in bed or just sitting, it is alarming, to say the least. My cardiologists have assured me many times that my heart is good, so I went to bed and tried to breathe through it and calm down. I woke up the following day and I was fine. However, I still had this feeling in my legs that makes me feel like I worked out too hard and they are weak. The thing with anemia is you can exercise, but you have to take it easy because your core organs need oxygenated blood, and you are already at a deficit.
In my search, I found symptoms that I never realized are also the same as CAD. One is tinnitus. It was at this point that I realized what should have been obvious all week. I was in fact experiencing hemolysis, more than my body could compensate for but without the darkened urine.
The problem is that CAD isn’t always an obvious disease. I often have no outward signs, and I can only go by what is a typical indicator and that is dark urine for me. The truth is you can still have hemolysis without that sign. I realized through all of this that the rapid heartbeat and the weak feeling in my legs should have been obvious signs, and the on-and-off tinnitus was a new clue.
I now know going forward that I can add tinnitus to my list of symptoms. This is kind of a good thing because that is something you hear; you can’t ignore it. At least I know in the future if my allergies are not acting up at the same time, it just might be CAD.