Want to hear real stories from other people with hemochromatosis, not just read the laundry list of "common symptoms" and the textbook "treatment options" on WebMD?
You've come to the right place. The snippets below have been shared by fellow hemochromatics - you'll learn what their symptoms REALLY felt like, how they figured it out, and what they're doing to feel better.
The views and opinions expressed in "Interview with a Bloodletter" are those of the guest interviewees, and do not necessarily reflect the views and opinions of talorae. Any content provided by these guests is of their opinion and is not to be taken as medical advice. No guarantee is given regarding the accuracy of any statements made in "Interview with a Bloodletter." The content here is for educational and informational purposes only. Because each person is so unique, make sure to consult your healthcare professional for any medical questions.
Ready to add your OWN story to the mix?
COUNTRY MOMMA
Started feeling symptoms at age 40.
Tips: "I try to take fresh turmeric and ginger every day...I think it helps."
Important message: "Please stay as healthy as you can. I lost my baby sister this past year to the disease."
SHELLSHOCKED
"I experienced pain in joints for years, but I always thought my days as a runner was the reason. My heart fluttering started 3 months before my diagnosis.
I continue to experience joint pain and I am scheduled for an MRI of my liver and heart so I feel very nervous about those results."
SPACEY
"When the covid-19 lockdown first started in March, one of the early suggestions going around in nutritional circles was to up your intake of vitamin C and Zinc especially the liposomal vitamin C, highly absorbable. So I did that starting in the beginning of April...by the mid to end of April I had become increasingly jaundiced and exhausted all the time and I could not keep food down, so my doctor ran tests and found it.
I was Triple National gold medalist in competitive swimming and I'm looking forward to feeling like being much more active very soon."
ANG
"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."
ROSIE
Diagnosed at age 59.
Started feeling symptoms at age 45.
Found out via 23 & Me.
"I can’t wait to be able to play with my grandchildren!"
PRINCESS OF GENOVIA
Diagnosed at age 19.
"Always had period problems, but it stopped in August of my freshman year of college. It didn't return for almost a year later. A couple months before that, my hair started to fall out and get really thin. Doctors misdiagnosed me with endometriosis, PCOS, and iron-deficiency anemia until my blood work came back abnormal."
FERRITIN FAIRY
Most affected by: over-sleep and low libido
Advice to others: "Read your food labels."
Fun fact: "I am staying in a hunting farm in Namibia."
ANONYMOUS
"The symptoms were constant. I was exhausted and depressed and in pain that I couldn't really explain to anyone...I would see other people and just wonder how the hell they did it. How did they have the energy, or more importantly, why couldn't I do it!"
Initial blood test results:
Serum Iron: 192
Transferrin Saturation: 70%
SANDY BEACH GAL
What were your symptoms?
"I only had one symptom --- unbelievable nausea! So bad I had to quit my job. Couldn't eat anything because it was so overwhelming. I was up walking the floor at night with it for several days before I finally went to my doctor."
Genetic results:
Homozygous (two copies) for the H63D mutation in the HFE gene.
SC IRON WOMAN
"The most difficult part of the diagnosis for me was a fear of the phlebotomies (I'm a pro now) and being told I could have no alcohol. Socially that was just very difficult and I always enjoyed going to wineries and breweries with friends."
"My doctor was incredibly blunt with me to the point that I cried when I was diagnosed. Get support. I went to a counselor to work through my feelings."
BATTLE ON
Iron panel results:
My ferritin was 4400 on the first blood test and 5200 at its height, saturation was 95%
Genetic test results:
One copy c282Y
BOB
Symptoms: Constant tingling sensation in hands and feet. Progressive numbness in left foot and right arm.
"Interested to hear if anyone else has encountered the tingling/numbness symptoms and whether they have found any answers/explanations."
THE HAPPY OLD LADY
Treatment plan from doctor:
Phlebotomy 1 time per week for first 4 weeks.
1st draw was a pint, but I felt sick and blood pressure got too low.
Subsequent draws were 1/2 pint, replaced with equal amount of IV fluids.
Advice for others: Take heart because you finally know the problem's name and now things will get better.
KNOWLEDGE IS POWER
Started feeling symptoms at age 51.
Most affected by: shortness of breath
Treatment plan: no alcohol, no supplements, vegetarian diet, walking, yoga, meditation, no caffeine (to improve poor sleep patterns)
"I am finally understanding what and why I have have struggled so badly with my health since menopause and cessation of periods."
RUSTY JOINTS JANE
Found out because: My grandpa died from it and my dad was diagnosed (after years of searching for answers to his pains).
Phlebotomy treatments: I had phlebotomies every week for 48 weeks. I then took a 6 week break because I was just so weak and ill. I had another 6 treatments. I now have a phlebotomy about once every 6 months.
PAIN REMINDS ME I'M ALIVE
Daily regimen:
- 4am - drink 32 oz. of water to give liver a cleanse
- 7am - drink 32 oz. celery juice
- 10am - fresh fruit smoothie w/ blueberries, mango, banana, a handful of cilantro, and a squeeze of honey.
- Lunch - a salad with chicken and falafel
- Mid Afternoon - eat a whole apple
- Dinner - some healthy homemade chicken soup or chicken stir fry
IRON LADY
Diagnosed at age 12 or 13.
"I still get very tired, and I experience a lot of anxiety and heart flutters. My biggest symptom now is hair loss.
I am a 20 year old Auckland girl who loves working, exercising and having a good laugh!"