Severe Iron Overload caused by too many IV Iron infusions

Posted by guyjeff123 @guyjeff123, Sep 25 9:35am

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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soonerfan | @soonerfan | Oct 5 1:58pm

In reply to @guyjeff123 "Hello again. Thank you all for the hugs and comments. I wanted to update you on..." + (show)

@guyjeff123

Hello 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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@guyjeff123

Congratulations on Being Mayonnaised! They are awesome there! I’m glad they are going to help you. God Bless!

guyjeff123 | @guyjeff123 | Oct 5 3:31pm

In reply to @kndaustin71 "gujeff123 What a relief! I have been praying hard that all your concerns will be addressed..." + (show)

@kndaustin71 Unfortunately I am unable financially to stay at MAYO or ion Rochester for my treatments. The team told me they are going to be more aggressive with the Phlebotomy. One doctor stated he wants to draw 250 to 500 cc's of blood per month. I hope he can make that happen, but I'm worried because the ferritin is in my bone marrow already and it and/or other problems with my red blood cell production is preventing me from producing RBC's that are full of oxygen. I think one of the conditions is called Anisocytosis. My hemoglobin will certainly drop when they draw my blood out. The answer to the question that is unknown, until they try the 1st phlebotomy, is how low my hemoglobin and RBC's drop and how long it takes them to get back to a safe level for them to do another Phlebotomy. These problems I'm facing now might not be there if my Hematologist here at home had referred me to Mayo a year and a half ago. Sometimes I get so angry at him and a couple other doctors I'm seeing, since there is no communication between any of them. I've actually been told a couple of times, " that's not something I know about, so you'll have to ask _________________," (fill in the blank) about that. The entire Medical Center has a shortage of doctors in every department and in some departments, such as one that deals with Liver problems, which I have, there is no MD. I see a PA about the iron in my liver. I'm just feeling helpless because in order for me to see another Hematologist, It's 90 miles away and I have severe chronic anemia. But I may have to just do it. Thanks for your support.

easrham | @easrham | Oct 9 6:29pm

I am 77 years old with MDS with SF3B1 mutation. I was told that I have iron overload several months ago. I am developing increased hand and wrist pain that I have read is caused by iron over load. I am learning that I have to keep reading to learn. I am hoping that I am gathering the right questions to ask my oncologist at my next appointment. I have not had any transfusions at this time.

I sure hope Mayo will have some help for you. Judy A.

janetlen | @janetlen | Oct 10 10:38am

@guyjeff123 I am so happy to hear you have a team who can help you. Can you reach out to the Social worker at Mayo to see if there is any no cost housing in the area that you could use?

kdalda75 | @kndaustin71 | Oct 11 7:29pm

No/ To Low cost housing was exactly what I was thinking as well. They were always so helpful when I called and spoke with them re transportation. Even the Customer Service department may be able to shed some light. Certainly the Mayo physicians wouldn't send you back to your original physicians to "partner care" for you! I am so glad that something positive came from your appt with them.

guyjeff123 | @guyjeff123 | Oct 15 8:43am

In reply to @janetlen "@guyjeff123 I am so happy to hear you have a team who can help you. Can..." + (show)

@janetlen .Thank you for your thoughts. I was so hopeful, especially after my visit on the 10th. He spoke with me and my legal Healthcare Advocate for almost an hour, and assured me they would help me. He asked if we minded waiting for a few minutes while he talked to his colleagues. After about 15 minutes he came back in with two of his colleagues and they both asked me a few questions and said I should stop worrying and that they would figure out a way to get the ferritin out of my body. We all agreed I couldn't make the 14 hour round trip drive and that they'd set up video visits and instruct my Hematologist/Oncologist back home on what to do. I felt so much hope when we left . The following week, my Oncologist ordered some labs and for some reason my ferritin level had dropped from 961 to 599ng/ml. I checked online at several reputable locations and got the same answer: that big of a drop is medically improbable with no medical treatment, and it dropped to 599 just 14 days after it was 961. I got a message on my MAYO patient portal the next day saying that since my ferritin had dropped to such a low rate it was determined that I no longer needed MAYO and my Hematologist back home could handle it from here. What a shock. So I'm back to square one, and depressed again. I'll write more as I know more. Thanks for being my support right now. I need it.
Jeffrey

bettycll | @bettycll | Oct 16 7:16am

Jeffrey - thank you for the update. I can only imagine how deflated you must feel after having such high hopes for treatment at MAYO, then having them say that you "no longer needed MAYO". I hope you can appeal this decision. Obviously, such a medically improbably drop in your ferritin level should be further investigated. All of us who heard your story are very concerned for you. God bless you!

janetlen | @janetlen | Oct 16 9:15am

In reply to @guyjeff123 "@janetlen .Thank you for your thoughts. I was so hopeful, especially after my visit on the..." + (show)

@guyjeff123 Jeff: I would be very disappointed with Mayo as well. If you keep your current Oncologist, you need to have a discussion with him about why he never tested your Ferritin level. Otherwise, if it were me, I'd be making the 90 minute drive to see a different Oncologist. I think it is a miracle that the ferritin has dropped to near normal levels. How is your anemia at this time?

guyjeff123 | @guyjeff123 | Oct 17 10:46am

In reply to @janetlen "@guyjeff123 Jeff: I would be very disappointed with Mayo as well. If you keep your current..." + (show)

@janetlen I may have confused you and possibly others. It wasn't my Oncologist that I have seen for the last 3 years. I was referred to another Cancer Center for IV Iron Infusions for Anemia. They are unaffiliated. The Oncologist/Hematologist at the Cancer Center of North Dakota, Dr. Anil Potti, is the doctor who gave me all those IV Iron Infusions without checking my ferritin levels. This is a small town of about 50,000 people. Most of my doctors work at Altru Hospital and it's affiliates. Dr. Potti did not. I can't even remember why I went out of network to see him for these infusions, my memory has gotten worse over the 3 1/2 years since I first saw Dr. Potti. Being a small town is nice, but every doctor seems to know every other doctor. I do know that my Oncologist I see frequently is a good friend of Dr. Potti's. Which makes me question everything he does or says, including why he did nothing to address the iron overload for over a year and a half. During my last visit with Dr. Panico, not Dr. Potti, I asked him to his face, " When you realized you and Altru Hospital could no longer do anything to help me, why didn't you refer me to MAYO a year and a half ago. He had no answer. It was at that visit that I had to ask him to refer me to MAYO, to which he replied, Oh, would you like me to refer you to Mayo. To which I replied YES, and I shouldn't have had to ask you now nor over a year ago. I hope that clears things up. Thank you for caring.

guyjeff123 | @guyjeff123 | Oct 17 10:49am

In reply to @bettycll "Jeffrey - thank you for the update. I can only imagine how deflated you must feel..." + (show)

@bettycll Thank you. I am looking into that now. God bless you.

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