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Replies to "Hi Lori I don’t understand why my ferritin levels have dropped so dramatically without any kind..."
Blood Cancers & Disorders | Last Active: May 8 1:26pm | Replies (6)
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Hi Lori I don’t understand why my ferritin levels have dropped so dramatically without any kind of interventions, like phlebotomy or drugs. I was told by my doctor that my initial test showed a level of ferritin around 1,000 mu/L, which was in 2014 or 2015 and I did have phlebotomy treatment at the hospital for about a year. Since then I have done nothing to treat my hemochromatosis Lori. My ferritin level last month was in the 90’s why would the level drop without any treatments or medication? I don’t understand how it could happen if the cause was genetic Lori do you know?
Replies to "Hi Lori I don’t understand why my ferritin levels have dropped so dramatically without any kind..."
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Hi Paul. From my understanding it can take years of accumulation of excess iron in the blood and organs before there are any symptoms or before intervention such as phlebotomies with hemochromatosis. That’s why it is sometimes discovered later in life of someone with the inherited condition. If there is an obvious family history it can be determined earlier with genetic testing.
When your doctor discovered your excessive ferritin level it was high enough that you did need to begin phlebotomy treatments on a regular basis for about a year. That may have been enough to bring your reading down to an appropriate level. I’m not a medical professional and only making a guess at this but, because iron is accumulative and took many years to get to the point of requiring phlebotomies, maybe once your level was reduced to normal, you were able to maintain it by diet and exercise.
The reason I say this is because I had very high ferritin due to the many blood transfusions necessary over my leukemia odyssey. I didn’t require a phlebotomy but to help reduce my ferritin, once I didn’t require anymore blood, was to follow a diet of iron blocking foods like nuts and seeds, legumes, whole grains, and green tea. It was suggested to eat less red meat and avoid supplements or multivitamins with iron and vitamin C. I made sure there was daily aerobic exercise such as brisk walking, weight lifting, biking, etc, because exercise can reduce ferritin levels as well.
I found another good article on hemochromatosis for you: From Uptodate.com
https://www.uptodate.com/contents/hereditary-hemochromatosis-beyond-the-basics
While your condition is genetic, it doesn’t mean you have a proliferative blood disorder where you’re producing too many red blood cells. I’m guessing your health improved once you had the phlebotomies and maybe you became more active and in doing so may be keeping your level at the post phlebotomy level? It would be interesting to get a professional opinion on this. Have you asked your doctor about their opinion on why you’ve not needed more treatments?