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As someone living with cold agglutinin disease (CAD), I was prescribed folic acid and not folate. The one thing CAD patients have in common is we have likely been prescribed folic acid; yet, some instead take folate. To make it even more confusing we are all prescribed different amounts. And even still some are also told to take magnesium, zinc, and many other supplements.

I belong to a group of people with CAD, and we share and often rely on each other since there is little support out there for this rare disease. They are so very helpful, and I am thankful that it exists. As we all have different situations, and we are all seen by different doctors around the world, we are all told something different. It can be confusing and frustrating.

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Not me. I have only been told to take 1 mg of folic acid. That dosage was too high and made me feel sick. It gave me heavy eye pressure and made my head hurt. I did eventually figure out the level I can handle—800 mcg.

It could be because so much of our food is fortified with folic acid that I already get enough, and the supplement just pushes me a bit too far over.

This topic has become a neverending discussion. Since we are all anemic, we are all prescribed vitamin B9 for red blood cell formation. Our bodies prematurely destroy our red blood cells, and this helps us. My assumption has been that they are the same, but are they?

There has been evidence that they differ just enough in how the body processes them that it can have an overall difference in your health. And to make it worse, it all depends on your genes. The study is new enough that it states most doctors and nutritionists are not even aware of it.

Folate is found in lots of different foods, many of which I eat daily such as broccoli, spinach, nuts, bananas, fruit juices, fruits, and nuts. However, folic acid is the synthetic form that I am prescribed. It is this form that can cause a buildup in your body and ultimately do more harm than good. I’m learning how folic acid intake can exceed my body’s capacity to handle the overload. A primary concern is that excessive amounts can tax my liver.

Since I have been taking folic acid every day for over 2 years, I find this to be very concerning. One of those health concerns is an increased risk of cancer.

My family is full of cancer. Every single child of the 7 on one side of my family has or has died of cancer. Another article that backs this up is from the National Institute of Health (NIH). The NIH’s study was specific to prostate cancer, and it focused on the concerns of fortified foods and the uptick in that specific disease.

Nonetheless, the less the last thing anyone wants to do is increase their risks, especially since many of the secondary diseases associated with CAD are different forms of cancer. Another concern is that older adults taking more than 400 mcg of folic acid daily experienced faster cognitive decline than those that didn’t supplement.

Conversely too little folic acid can have worrisome results as well. So, what do we do? As a person with CAD, I require folic acid or folate to keep my body making blood cells to support my bone marrow.

This is an important conversation I must have with my hematologist. I don’t usually do anything without speaking with him first but there are some serious red flags here that warrant, I believe, an increase in folate from foods, and perhaps I need to change the supplement I am taking.