Severe Iron Overload caused by too many IV Iron infusions

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

@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.

@myoga , You should google Anil Potti, Duke University Medical Center. Yes it's the same doctor, but wait till you read what he did at Duke Medical Center.

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

@guyjeff123 yes I have been dealing with iron overload from dextran iron infusion.
I have been taking chia seeds (put in juice about 30 minutes prior to consuming because they will increase in size when combined with liquid) and CoQ10 to help my body get rid of excess iron.

I have been taking bacillus coagulans probiotics to help with joint pain from excess iron.

I have been taking small amounts of methylene blue to help my mitochondria regain function.

I hope you feel better soon

I have read your posts with great interest and would like to follow your journey. I, too, have high iron overload and it is caused by blood transfusions. In simple terms my bone marrow does not produce enough red blood cells and my haemoglobin level is low. I am required now to have 2 bags of blood every 3 weeks which of course does not help the iron overload. Previous history was breast cancer in 2016 and I have the red blood cell problem “because it was just the card I was dealt”. I had radiotherapy and chemo. I am currently having chelatin therapy which is to take 2 tablets daily. This is a light dose as I cannot tolerate higher. I am in Australia and it seems to me that you have access to more medication than I have. My very best wishes to you. Would love to follow your journey.

@wakeley I don't think you really would. I only have 1 kidney. I can't even have Chelation therapy. And since my bone marrow also has ferritin in it, I'm not producing enough healthy red blood cells to have anymore phlebotomies. I'm in poor health, with CHF and a bunch of other comorbidities. Everything my team of 6 Specialists could do to lower the amount of ferritin in my body either will cause my only kidney to shut down or it will lower my hemoglobin so low I could end up with Hypoxia. The doctor that poisoned me with IV Iron infusions did a good job of it. After 13 infusions my ferritin level was 2149ng/ml. That was 2 years ago. Shortly after the infusions, my left kidney atrophied, and in June my Pancreas atrophied. But that's what ferritin levels over 1000 do. They either shut down organs or they cause Cancer. My situation is not an enviable one to have. I pray that you are doing better than I am. God bless you. I do have access to all the right drugs and procedures, I just can't take the drugs and I can't have the procedures. I wish you the best. I fear my journey won't last much longer. I'm praying for a miracle.