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John Taylor (@jdtay87)

New to anemia. What to expect?

Blood Cancers & Disorders | Last Active: Aug 27 8:40am | Replies (30)

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My iron deficiency anemia was discovered in 2016. (I already had pernicious anemia which is another subject I will not address here.) The reason for my iron deficiency anemia was not found — there were various speculations, e.g., heavy radiation for cancer in 1990, repeated urinary tract infections, exposure to chemical when a child, etc.
Iron deficiency anemia was found via blood tests were administered by my primary care doctor upon my complaints of extreme weakness, tiredness, rapid heart beat, and brain fog. The tests revealed dangerously low ferritin, red blood cells, hemoglobin, etc. so I was directed to immediately consult with a hematologist/oncologist which I did.
The hema/onc doc offered an immediate fix via an iron infusion and in the meantime, prescribed a daily iron pharmaceutical drug (Ferrex). (I declined getting an infusion for my own reasons; however, I have met others who did just fine with them.) My diet already included plenty of iron rich foods but I increased my red meat intake.
After one month of the prescribed iron supplement, I was on the road to normal levels and got the following blood tests every 6 weeks (initially) and then every few months plus I would meet with my hema/onc dr:
CBC/CMP (Complete Blood Count and Metabolic Profile)
Iron Bind Cap (TIBC)
Iron Saturation
My body would not retain sufficient levels of iron and ferritin stores so I was forced to continue the iron pharmaceutical drug which played an absolute havoc with my already challenged digestive/intestinal system. Once I felt I was out of the woods and was no longer in serious trouble, I started independently experimenting with non-pharmaceutical iron supplements and tried unsucessfully to get tips from costly alternative doctors since my hematologist/oncologist had no knowledge of non-traditional/complementary med. It took me 2 years on my own to eventually find a over the counter iron supplement that continues today to work well for me today: NovaFerrum Dietary Supplement capsules [a polysaccharide iron complex, 50 mg] with water and on an empty stomach. (I found if I don't take the supplement, my blood values dip to below normal levels within one month.)
While this may never apply to you (my fingers are crossed), the regular administration of my blood tests listed above which I was getting every 6 months, revealed MGUS (Monocloncal Gammopathy of Undetermined Significance) in 2021. Because of the MGUS diagnosis, I now get other blood and urine tests that track the progression of MGUS plus I continue to get the ones related to iron which I've listed above. I will be getting my next battery of tests next month.
Everyone is different and there could be plenty of reasons for developing iron deficiency anemia but I do hope that my experience may benefit someone! 🙂

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Replies to "My iron deficiency anemia was discovered in 2016. (I already had pernicious anemia which is another..."

This sounds like me. How did they find the MGUS and what do you do to manage it? Do you feel better? I can’t hold iron and needed a blood transfusion.