This month marks two years since I was diagnosed and began my treatment for hemochromatosis. Just as a refresher, hemochromatosis means your body stores too much iron or ferritin. It is stored in the organs, joints, and is toxic! Too much iron can lead to cancer, arthritis, organ failure, and other scary stuff!
Let me tell you, what no one else told me about Hemochromatosis. It's a roller coaster! For example, in May of 2018 I was at a ferritin level of 343, the lowest I had ever been! I was so excited and jumping for joy! I didn't have to go in for a month! At my next phlebotomy, my iron jumped to 474! An unexplainable increase. That was a punch in the gut! So I had to start going back to the Doctor twice a month. Ugh!
That jump in iron, has happened about every five months for two years. FRUSTRATING!
The feeling of frustration is odd because there's nothing you can do but you're still mad at your body. In the past it would make me emotional and I'd cry. I just didn't think I could take it anymore. I know I should just be patient but it's so hard, especially when you just want to get the iron out already!
Today, I am happy to have my ferritin level back under 400 again! When I started two years ago, I was at a ferritin level of 4,200. So I have decreased my bodies iron storage for 10x and reduced my risk for bigger health problems down the road.
Next week, I have another ferritin and I swear, if it's not super low, I will scream! I am confident that it will be low and I can go back to monthly visits. Hopefully by the end of the year, I will be on maintenance mode! Fingers crossed.