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Severe Iron Overload caused by too many IV Iron infusions
I'm a 65 yr old man, with 2 prior cancers, currently cancer free? I have a condition called Iatrogenic Iron Overload, ( iron overload caused by medical treatment). I developed chronic anemia from external beam radiation in late 2021. I was treated with External Beam Radiation for Prostate cancer that caused a radiation burn in my descending colon. I was referred to the Cancer Center of N. Dakota in Grand Forks, ND in mid 2022 for chronic anemia. Over 9 months I received 13 IV iron infusions and the doctor never checked my ferritin levels until after the last infusion. It was 2149 ng/ml. I tested negative for Hemochromatosis. Two months before any treatments my ferritin level was 49ng/ml. Now I have systemic Iron in most of my organs including my bone marrow, lymph nodes in my lungs, my liver is severely overloaded with Iron. My left kidney atrophied and was removed in 10/2023. My Pancreas was discovered atrophied in June of 2025. I don't qualify for Chelation therapy because I only have 1 kidney and it has Stage 3A CKD. My Oncologist/Hematologist ordered 4 phlebotomies, but those were cancelled after the 1st one because my Hemoglobin dropped to dangerous levels. Finally after no treatment at all for the high serum ferritin in my body for almost a year, I was referred to the Mayo Clinic in Rochester, Mn. I have my first appointment on 10/03/2025, to see if they can do something. I pray that they can help me otherwise my prognosis is grim. When the Ferritin reaches my heart, it will deposit in the tissue and muscles and my heart will no longer function. I'd like to hear from anyone who is or has experienced Iron Overload, especially if it was from a doctor who could have prevented this, if he'd only done periodic ferritin level checks in between IV iron infusions. God bless and I hope to hear from someone?
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I am so distraught over your medical status at the hands of incompetence! When is your appointment at Mayo? And is Mayo the best place for you to go? I know it is probably closer to you but what about Temple or John Hopkins? Please keep us informed and feel free to e-mail me if you might need someone to do additional research! Bless you, as well!
@kndaustin71 Thank you. I appreciate your concern. Yes Mayo is by far the closest and they are supposed to have a 1st rate Hematology Dept and that's where my 1st appt is this Friday. It's a 7 hour drive, but my best friend, who is also retired, is taking me and paying whatever the costs of the trip are. we're leaving this morning for Minneapolis, and we'll spend the night there tonight. Then tomorrow we only have a 1 and 1/2 hour drive to the Mayo clinic. I'll keep this group updated as long as I'm able to, which I pray will be a long time.
Thanks @kndaustin71
I hope you got to see a team that will help you. I have been to see Mayo doc’s @ the Mayo in Rochester. I have been very impressed by them. I only have had one bad encounter, but they were not a doc. Good luck to you.
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1 Reaction@soonerfan Thank you. I appreciate your comments. I am praying that I don't hear the words, " We can't help you, maybe a year or alttle more than that, we could have done something, but now the iron is everywhere. Sorry". Then I go back to my Hematologist back home and ask him again, why you didn't refer me a long time ago. God bless you.
Hello I am truly sorry and hope the best for you. My mother who was 78 just passed and I believe it was from iron overload. I dont know much about it and trying to educate myself on line. Not that easy to do. But she had been giving 4 iron infusions in the past 2 months. And never felt any better. Actually she started feeling worse and she was anemic, with diabetes. She finally got ahold of her doctor and told him her symptoms and he told her she needed to come in and get 2 pints of blood. So she did and never left the hospital until 2 days later when she passed away. My question is what if she had not called the doctor would she still be here and if she needed the blood why didn't he contact her? Still waiting for the autopsy report but to be honest I dont know if I can believe that . Probably never find out the truth but thanks for listening and I will pray for your recovery. Thanks
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1 Reaction@hope4mom I truly hope that you are able to find some answers. It is a difficult situation for you to be in right now and I applaud you for trying to get it all figured out. What do you plan to do with the information when you receive it?
You're always welcome here on Mayo Clinic Connect. We are a group of patients and family members and caregivers who share our experiences with each other. What your mom went through will be helpful for others.
Ginger
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2 Reactions@gingerw Thanks gingerw . I'm not sure what I will do with the info if I even get the honest info. I just want to know why my mother was suffering the last few months of her life. She went from bad to worse to death in a matter of 2 months after her 4 iron infusions and then blood transfusion. The hospital is saying heart failure. And not mentioned her blood work no.s . Anyway thanks for your time and bless you.
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1 ReactionHello again. Thank you all for the hugs and comments. I wanted to update you on what happened at my visit to MAYO in Rochester. My best friend was kind enough to take three days out of his busy life and pay for everything that was needed to make this trip, gas. meals, hotel etc... and he did all the driving. He is deeply involved with my health issues and follows all the test results and procedures, and has been doing that for the last 3 years as my health has declined. We went to the appointment and after the nurse finished asking me a lot of questions, my doctor came in. He was nice and said he had read all the medical records and knew what I had come to Mayo for. Jim and I both asked him lots of questions and Jim had done a lot of research , so he asked a lot of procedural and complicated questions that were over my head. However my doctor complimented Jim on several questions and answered all of them. After an hour , I had a final question which was "do you think you can help me?" He replied yes and asked us if we would wait here while he went to talk to his colleagues and they would be back shortly. After about 20 minutes, he came back with two other Hematologists. Three doctors, who said they would be the team that would be working together to help me. We talked with all three of them for another 30 minutes or so. They told me their plans and what I could expect and they all reassured me that they believed they knew how to not only lower my ferritin level in my blood, but also remove most of the ferritin from the organs it had already deposited itself in. I teared up when they said that. I could barely say, between the tears and being choked up, that I was so grateful and that they gave me hope; hope that I had not had in the past 2 years. I believe that they were sincere and I am so very grateful today for Jim's help and especially for the empathy My MAYO Team seemed to have for me. This morning I want to tell all of you that I have three of the smartest doctors in the Country who are now my doctors and I have thanked God for answering my prayers, and I have HOPE. Thank you for your support also. God bless you all.
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4 Reactions@gingerw
Thank you for your support. I posted a rather lengthy comment about my visit to MAYO. I believe I answered your questions in the post. At any rate, I did get a team of brilliant doctors who said they can and will help me. I am so grateful and as I said in my post, I have hope for the 1st time in two years. Thank you @gingerw
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1 Reactiongujeff123 What a relief! I have been praying hard that all your concerns will be addressed and you would find a Team of Physicians to help you. Will you be staying at Mayo for awhile....certainly would not want them to rely on your hometown physicians to follow-up on your care! Being one's own advocate is so very important and to be unrelenting in seeking and insisting on results. Looks like you have a great friend in Jim. Bless you both!