column logo Alithea Athans

I often have so many different symptoms that I can attribute to having cold agglutinin disease (CAD). As any person with CAD can tell you, many symptoms are misdiagnosed as many different conditions until it is finally correctly diagnosed.

A set of these symptoms include dizziness, fatigue, lightheadedness, rapid heart rate, and headaches. You can have all or just a few of these depending on how heavy hemolysis is. Self-diagnosis can identify many different issues from dehydration to a poor diet, and so on.

Now take these symptoms and go to a hospital. While emergency room doctors are well-versed in a broad range of medical situations, chances are they are looking for the most common explanation. Now add in a rare disease. The likelihood is that they don’t have any idea that you have a rare disease and they aren’t going to come to that conclusion in this setting. This is where we often find ourselves. Misdiagnosed. Then there are those of us who have gone through all of this and now have a CAD diagnosis.

Continue Reading

I can’t tell you how many times my symptoms have been explained away as something simple and common. You name it, I was told I have it. One I suspected I had and was tested for is diabetes. I have wondered for years if I did have this, and doctors thought so too. I often get really sick and feel faint as if I needed to eat right away. This is what made me think I may be diabetic, coupled with the other symptoms I mentioned. What I have found is that anemia can show false high blood sugar levels on glucose meters, and because of this, patients will often be overtreated due to false high blood sugar putting them at risk for a dangerous hypoglycemia event.

Read more about comorbidities with CAD

Luckily, I do not have diabetes, but my common symptoms have looked like it. I have not thought of it since my confirmed CAD, but recently, I read on social media that a CAD patient was in the hospital and was diagnosed with diabetes and was started on insulin. As the discussion went on, there were even others that had gone through the same situation in the hospital. Some even tried to explain to the nurses what they had and they were ignored and were continued on diabetic medication. The thought of taking drugs for something you do not have is frightening.

I too found myself in a walk-in clinic trying to explain to the doctor what I had as he tried to go in a different direction. Thinking ahead, I brought up records in my app from my hematologist’s office. He was able to look over all the blood tests I have had. It seemed to help to give a baseline of what my bloodwork looks like when I feel fine. It may not help in a situation when it comes to suspicion of diabetes, but I still make sure to share what I can.

I was searching for more information and I found that although diabetes and anemia cannot cause each other, they can complicate each other. What is interesting is that anemia can cause a spike in high blood sugar levels. This is how they can get confused. Adding to the confusion is that about 25% of Americans who have type 2 diabetes also have anemia.

There are reports of patients going to the hospital being treated for diabetes when in fact their CAD symptoms were mistaken for diabetic gangrene. Yet another where a patient was admitted for diabetic ketoacidosis. After running tests and attempting to treat for diabetes, doctors discovered the patient had CAD and they simply needed warmed fluids, and to be released with the advice to stay out of the cold.

It is important for me to share what has happened with others with CAD and similar anemias. It is scary when you are misdiagnosed and treated for something you do not have just because the symptoms are similar. But what really got me was that those who had CAD tried to explain it to the nurses and doctors. They were instead met with indifference.

We are not doctors or nurses but when you have a rare disease, you have to speak up and show your records. Doctors and nurses need to have a better idea of what they are dealing with or you just might be taking medication you don’t need.