Ironing out low ferritin levels after surgery for SMAS

I struggle when I lie down to sleep, and my legs hurt so much that I need to move them. I don’t get a good night’s sleep, and when I awake in the morning, my brain is foggy and I feel like I’m moving around in a bubble. I am beyond exhausted, need to nap almost every afternoon, and have a headache I can only explain as a vice grip on my temples. Plus, my hair is falling out. This has been going on for a few months now.

I reached out to my doctor to see if these symptoms might be connected to my recent surgery for superior mesenteric artery syndrome (SMAS). I learned that iron absorption happens in the part of the duodenum I had surgery on. Many people struggle with nutrient absorption after SMAS surgery, but lab results showed my iron levels were normal. So why did I feel this bad?

It may sound confusing, but while my iron is technically normal, it really isn’t. My serum iron, or iron levels in the blood, was 6 points above normal but dropped 49 points after the surgery. My ferritin levels, a measure of the amount of ferritin in the blood (ferritin is a blood protein that contains iron), was 2 points higher than the level needed for an anemia diagnosis, but it had dropped more than 24 points.

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I am guessing that my body felt the first 24 points more than it would feel the last 2 to get an official anemia diagnosis. While I do not officially have iron deficiency, all the effects are there.

There seems to be some disagreement about what optimal ferritin levels are. One website pegs it at above 70 ng/mL for hair regrowth, which was where I was before all my hair fell out! My low ferritin also explains my restless leg syndrome.

An iron infusion and hamburgers

My hematologist recommended an iron infusion to replenish what likely was depleted as a result of surgery and recovery. I was so relieved that I cried! But I’m now in a waiting period to get the infusion, which makes me want to cry for a different reason.

While I’m waiting for the infusion, I’ve discovered that if I eat ground beef, I will perk up for two to three hours afterward. That’s likely the heme iron, so I am now eating ground beef one or two times a day. It’s excessive, I know, but it’s good to have a period after I eat when I can function again.

I have so much empathy for women with hemophilia who need iron regularly due to horrific periods. I knew that low iron made women feel terrible, but until I lived it, I didn’t understand the depth of the debilitation.

I hope the iron infusion will greatly improve my daily functioning and restore my hair. In the meantime, burgers are on the menu!

Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always consult your physician or another qualified healthcare provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to hemophilia.