Hi. I was recently diagnosed with hemochromatosis based on slightly off bloodwork and genetic test. Neither of my parents had hemochromatosis but both were carriers and I inherited the gene from both.
My ferritin is currently 111 (I previously always had very low ferritin and actually had one transfusion 20 years ago due to severe anemia) and my TIBC is 214. Hematocrit 47.5 and hemoglobin 15.8.
I am having my first phlebotomy treatment next week. My doctor thinks I will not need many to bring things into normal range initially, then maybe once every 3-4 months as needed.
She has advised me not to take Vit C supplements (it was in my B-complex vitamins), iron supplements (I was eating supplemented cereal) and avoid red meats and raw seafood (easy for me as I don't like them).
Does it seem likely I would have had any damage to organs at this point? Any advice for me other than what my doctor has given me? Thanks so much!
Written by
Sunnyskies33
To view profiles and participate in discussions please or .
hi , very unlikely most peop lee aren’t diagnosed till in the 1000s .
Did they say what you tsat is that’s a number that needs monitoring .
There is no problem eating red meat but raw sea food does need to be avoided .
If you on face book there is an amazing private group called haemochromatosis family where i got all l my help and info from when diagnosed , no question to small on the group .
Venesections used to bring mine down by about 50 a time but now i’ve been in maintance for a few years i give blood 12 weekly to stay at 50 or below
Hi there. I’m not familiar with the other values as I’m only ever told my ferritin results but I don’t think a ferritin level of 111 is that high.. the range is 30-300 in a healthy person but I’m told mine needs to stay below 100. I get given a venesection every time my ferritin is above 100 but they offer it to me once it approaches that figure. I once met a woman whose ferritin levels were in the 5000s.
Without knowing your age and gender it’s difficult to know whether you’d have organ damage, because menstruating women have a natural mini venesection every month! And the older you are, the longer you’ve had haemochromatosis for so there’s slightly higher risk of damage.. but even at that I doubt you do though going by those ferritin levels. They should run tests to check for you, I think my kidneys and liver are checked once a year.
Advice wise I do as you’ve been told above, avoid supplements. Smoking will directly deposit iron into your blood so best avoided, Guinness has lots of iron, so do organ meats so avoid liver pate etc, drinking tea/coffee with food helps reduce iron absorption and I read somewhere that exercise may help excrete iron in sweat. Plant based iron is less likely to be absorbed by the body anyway so don’t worry about things like spinach.
When I was diagnosed 2014, my ferritin levels were around 1200 / 50% saturation.
Since I am heterozygous, the doctor was reluctant to diagnose me with hemochromatosis. He ruled out alcohol consumption, fatty liver ,although there is some connection between the two, especially with H63D and other metabolic diseases, now have issues with fatty liver and some insulin resistance (another long-term effect of hemochromatosis), but not when I was diagnosed.
He also ruled out autoimmune hepatitis, alpha-1 antitrypsin deficiency, Wilson's disease, etc., all because, theoretically, heterozygotes are little or very unlikely to develop the disease or only in mild forms. In much of the medical literature, only the homozygous manifestation is considered clinically significant, which, in my opinion, is an outdated view of the disease, as there are several cases in my family, and the evidence is overwhelming.
Currently, I donate blood about three times a year, and occasionally, the doctor recommends longer pauses because my iron levels are very low (The last time, I had a ferritin level of 8).
A ferritin level of 100 is low, and with just one or at most two phlebotomies, you’ll likely experience iron depletion in the blood, and then they’ll have to wait to see how quickly you start accumulating iron again.
A slight increase in ferritin and saturation is more commonly related to inflammatory liver processes like NAFLD than to hemochromatosis. I hope everything gets resolved soon
If you are a woman, it is important to know when you entered menopause because, from that moment on, hemochromatosis can start to manifest slowly since you no longer have your period. Unfortunately, in men, it often 'attacks' practically from a very young age with disastrous consequences
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Haematomchrosis update
One faulty gene