At what age did you get diagnosed with iron overload / hemochromatosis?

49

I have a prior rare blood platelet disorder that had required life sustaining transfusions that combined with other treatments activated the HFE gene mutations. I have no issues yet but iron must be reduced. I was tested as my brother was diagnosed last year. Unfortunately due to the stabilized rare platelet disorder, I am not a candidate for standard phlebotomy treatment and had an adverse reaction to Deferasirox an oral chelator, and now will require subcutaneous Deferoxamine chelation. Due to COVID and my unique situation treatment can’t begin until April 2021.

Did your symptoms affect your daily life, such as your ability to do your job or your relationships?

No impacts obvious - I am very active and workout twice a day and have an average of 15000 to 18000 steps per day since making other diet and lifestyle changes over the past two years. I have been doing many of the things recommended on your site as many of the suggestions overlap with impacts of prior existing blood disorder Idiopathic amegakryocytic thrombocytopenia. As of my diagnosis with Hemochromatosis October 2020, I have shifted to a vegetarian diet and also plan meals based on much of the recommendations on this site and other hemochromatosis or iron overload books/resources.

Until recognized treatment begins, I am accessing EDTA Chelation which is not a primary remover for iron but chelates iron and many other toxic metals. Hoping this will help but very costly at $200 Canadian per weekly treatment. For me it was worth trying this treatment to determine if it along with the reduction of the meat based diet and the use of iron inhibiting options with meals helps lower iron. Getting things sorted out to manage this condition has been very time consuming. It has required a lot of extensive meal planning, an organized approach and an openness to life changes as necessary. I actually feel better on the plant based diet and have even more energy than my norm.

How did you discover you had iron overload / hemochromatosis?

Testing as my younger brother was diagnosed last year.

Did you get a genetic test for iron overload? If yes, what were the results of the test?

Two copies of C282Y mutation

When you got diagnosed, what was the treatment plan your doctor gave you? Did you make any diet or lifestyle changes?

My hematologist for my other blood disorder along with the Rare Blood Disorder Unit for Southern Alberta are managing the medical aspects of my treatment but indicated just to reduce red meat consumption and indicated other actions may not help. Due to my other condition, I am not one to sit idle and believe my other condition is stabilized due to much of the work done independently with my research and the input of a very supportive naturopathic doctor.

My other condition was life threatening with platelets needing to be transfused twice a week to stay alive over a year period. I underwent several special cancer like treatments/immune related treatments without success along with other women specific treatments to control blood loss. My experiences motivated me to take matters into my own hands. Medicine and treatment have a place but I believe combined with diet and natural approaches a bigger impact is possible with many health conditions .

Medical professionals are not able to explain why I have improved and stabilized with the other condition. I hope to demonstrate once again the value of a combined approach of natural and medical treatment is beneficial.

How did your family, friends, and peers react when you told them you have iron overload / hemochromatosis?

It was not surprising to be diagnosed but those in my personal network were sad to hear I had another health situation to manage. My family, friends, and network know that I will get this situation balanced and managed. I know this situation will be addressed and managed with my ongoing commitment and efforts.

Did you continue to experience any symptoms after your diagnosis? How do you feel today?

Time will tell, I have just had my 4th EDTA Chelation and diet was not really completely adjusted until later October.

Do you have any tips or advice for others struggling with iron overload / hemochromatosis?

Dig into where you want to be with health and life. Learn to focus on what you have control of and do your research. Good things happen when we continue to adjust but still live a full and rewarding life. To manage any condition requires change, adjustment, along with a belief and investment in making things better. A number one factor to wellness is our mindset.

Bio:

Reside in Calgary, Alberta. I am very active and dedicated to wellness. I love learning and education and seem to be always involved in adult learning and growing. I have a number of creative hobbies, passionate about making a positive difference in the world through my work as an Executive/ Career and Life Coach along with my other professional role as a senior leader in the human service field.