Having an autoimmune disease such as cold agglutinin disease (CAD) means you see your hematologist often. It is a rare blood disease, and, in my case, I go to the lab every 6 weeks to monitor my hemoglobin (HGB) among other things.
CAD affects a lot of my blood test results but the HGB is one that concerns me most. I know when I have gotten cold I can feel it and the complete blood count (CBC) confirms it. The problem is many things can make you feel sick, from stomach issues to a cold. In other words, not everything is related to CAD but the only way for me to know is to test my blood.
It’s not cost-effective nor appropriate for me to run to the lab every time I feel off. Whatever I am experiencing may just be a normal sick reaction to something simple.
Read about the diagnosis of CAD
As I said, there is just no way to know without a blood test. I turned to the HGB app that measures your HGB through a picture of your nails. This is truly an amazing app if you are iron deficient, which I am not. I did the app and then went in and had my CBC done. I emailed the company and explained what I have and asked why it was 3.2 points off from my blood test. This is when I found out it is not for people with autoimmune hemolytic anemia. They did, however, say they are working on it and offered the opportunity as a beta tester when that happens.
Recently some other CAD patients mentioned in a group post that they bought an HGB tester kit, and it was very accurate. I immediately tried to find the one they both had but to no avail. I did a lot of research and found a Lysun HGB tester.
It’s important to mention these are not easy to use. I am not a nurse, and it takes a lot of trial and error. You use a lancet to prick your finger, collect the blood in a collection tube and squirt it into a test strip that you slid into the handheld device. Sounds super simple. Here’s where it gets hard. Sometimes my blood doesn’t want to come out, so I have to message my hand first and squeeze the fingertip. When the blood pools you need to suck it up quick enough, so it doesn’t have enough time to hit the air. CAD blood cannot go below 37°C or it begins to thicken rendering it useless. This is by far the hardest part; you need to keep practicing but that requires a lot of sticking with lancets. I can attest to the fact that it hurts, like a bee sting.
Once you get it down it is an excellent tool to have at home. Trust me when I say do not do this every day. You will want to when you first get it, but you need to be careful as I read you can get a hematoma, and all of the finger pricks hurt.
I needed to test its accuracy and waited until my hematologist visit. I had my appointment this past Thursday. I brought the kit with me, I tested myself in the car, and it was 10.5.
I mentioned recently that I had a mishap at the lab. I assumed that the phlebotomists understood what I have and never in the past 2 years told them it needed to be kept warm. This time I gave them my CAD card and it was a whole new ball game. The phlebotomist grabbed a warm pack and put the vial for my CBC in it, even before the draw, then she took it straight to the lab to be tested, keeping it warm the whole time.
When I met with my doctor shortly thereafter, I explained what happened last time and what I did this time to ensure an accurate HGB. He thanked me for advocating for myself and explained that phlebotomists are used to drawing blood all day long the regular way. Since I require something entirely different it was good that I acted.
I told him about the Lysun and asked if there is a difference between a capillary draw and venous. It turns out that capillary will always be slightly higher. He felt it was a good device to have at home. My CBC came in and my HGB was 10.2, leaving a 0.3 differential from the Lysun I used in my car.
I am thrilled that it is accurate. My doctor explained that he could draw my blood again and retest and there will always be a 0.4 error between tests and that is normal.
Obviously, these HGB tests are not meant to replace going to the lab but when you feel unwell it’s a great way to determine if your HGB has dropped.