Severe Iron Overload caused by too many IV Iron infusions

I am so sorry to hear about your treatment. So much of what i have heard is about chelation therapy being the toxic metal remover. For Iron especially. Knowing all that occurred and finally being referred to Mayo I hope is your flag of hope. Please keep us posted. My hope is they can help.

Thank you @katbob. I appreciate the sympathy. So many things have gone wrong and I'd say that some of it is my fault for not speaking up a year and a half or two years ago, but I'm not a doctor. I didn't know anything about Iron overloads or chelation therapy or phlebotomy. Sadly my Oncologist/Hematologist locally should have. Once he stopped the phlebotomy after giving me hope. He should have referred me to MAYO back then, or maybe he should have referred me 2 years ago. He's the one that's supposed to know about this stuff, not me. I have an appointment with him today and I have compiled some hard questions for him. Thank you again.
God bless you and yours.

Is there anyone out there who is dealing with Iron Overload not caused by Hemochromatosis? Mine was caused by a reckless doctor at The Cancer Center of North Dakota when I went there for treatment for chronic anemia. I received 13 IV iron infusions over a 9 month period. He never checked my ferritin until a month or so after the last infusion. My serum ferritin level was 2149ng/ml. I can't do Chelation therapy because I lost a kidney that atrophied a couple of months before I received my last infusion. It's suspected now that it atrophied due to ferritin overloading the kidney. My Urologist could find no medical explanation for the kidney to fail, but we weren't looking at ferritin overload back in 10/2023 when the kidney was removed. In june my Pancreas atrophied. Again, no medical reason was found and I'm trying to get my Hematologist to order a biopsy to check for ferritin as a cause. I'm also looking to see if Sanford Medical Center can check the kidney that was removed, they don't throw organs away, to see if there is ferritin in it. I'll be going to Mayo Clinic in Rochester, Mn on 10/3/2025, to see if they can do something to lower the ferritin before it gets to my heart. I have a systemic overload. Ferritin has been found during biopsies of my bone marrow, lymph nodes in my lungs and a severe amount in my liver. If anyone has dealt with extreme iron overload or if you had a loved one pass away from multiple organ failure, secondary to very high Serum Ferritin levels, please contact me. If Mayo can't help me, my heart is probably next and I won't survive that. Thank you.
@guyjeff123

Jeff, my heart breaks for what you're going through. My mother had cancer related transfusions of just red blood cells for 14 years. A consequence was iron overload. She was successfully treated with Deferoxamine, brand name Desferol. This enabled her to excrete excess iron. Unless you've already tried this, ask at Mayo. The drug has been around for awhile. There may be something newer but this was effective. Life should not be so tough. I wish you an easier road ahead.

@guyjeff123! I am so sorry that you have had the misfortune of a reckless if not negligent physician. I certainly hope that perhaps you have contacted an attorney to share your experience......primarily so that he can not repeat this again! You should not have to police your physicians clinical practice! Hopefully Mayo will be able to help you, the place that you should have been sent to in the first place. Best of luck and I will be thinking of you!

@kndaustin71 Thank you for your response. If I thought I had enough time I'd try to get an attorney, but I don't feel like I do. I also don't have anyone to continue with it, if I'm right about my time. I do pray that God will heal me and I'm also hopeful MAYO may know some things my Hematologist here doesn't. God bless you.

@guyjeff123 My thoughts and prayers are with you. I am so very sorry that you are dealing with this when there was no need to. I too have had a major medical event at the hands off physicians who have been inept and it effected me from age 40 on and then a 2nd event. I do do wish that there was an effective way to deal with these types of incidents. "Do no harm" seems to be have forgotten as well as any accountability. Physicians do no police themselves....good ole Brotherhood

@kndaustin71 It's absolutely a brotherhood. Especially in a town of about 50,000 people. But in this case, I knew that the two Oncologists I see, one of whom is also a Hematologist, are good friends with the one who poisoned me. The Hematologist should have referred me to Mayo at least a year and a half ago. I don't have a lot of choices and I made the mistake of assuming my hematologist knew what he was doing and therefore I trusted him. Same thing for the doctor who was giving me the iron infusions. They may not work for the same Medical Center, but over the years they probably fellowshipped together. I learned a hard lesson, and if I survive this for a year or more, maybe there will be some justice. I do plan on suing at least one of them. But with no heirs, there will be no one to follow that through, in the event that I die before it even reaches the Court System. God bless you.

I feel that I was a victim as well. At 39 I had the right side of my head go cement numb only to find out I had a brain tumor the size of ping pong ball in the right side of my head. The neurosurgeon I saw had a one man office, with his Dad. He had no idea what the tumor was except that it was benign....says he conversed with peer from other places. Too scared to even think. Long story short I was left with 3, 5 & 7 nerve damage. Right lid doesn't come up, eye ball frozen forward, but on the bright side everything else, including my big mouth moves. It destroyed my psyche, being female and just turning 40...I have never recovered from the anger. Didn't let it completely destroy me tho as I continued with my career as a RN, got my Masters and always held Administrative positions. He should have sent to to a high level of care! Even wrote him a letter about 2 years ago expressing just that and letting him know he forgot the "do no harm" sorry to go on and on but that's what people my age do!
There has got to be a way in which the attorney can continue....even with no heirs. I will think! Bless you!

@kndaustin71 Thank you. I appreciate you sharing some of your own story. It makes me wonder how many medical mistakes have caused people to suffer and others to die. I'm suffering and dying. If MAYO can do anything for me at this late stage, when I've already lost 2 organs and my liver is severely overloaded. That said, I don't know what I'll do if they can't help me. I'm in danger of losing my liver to Cirrhosis and my remaining kidney may atrophy like the left one did. Nobody seems overly concerned about my Pancreas atrophying, even though AI says that though I'm not diabetic, the lack of a Pancreas usually causes Diabetes Melilites. And then there's my heart. The ferritin level has dropped from a high of 2149ng/ml to an average of about 1000ng/ml. If it gets in my heart tissue and/or muscles that's it. God bless you.