I have had Lupus SLE since 2002 and have now been diagnosed with Haemachromatosis in November 2024.I am to have venesection to reduce my iron overload.
I would love to hear from anyone else who has both these conditions or just the Haemachromatosis and what has been their experience and treatments.
Strangely I was just looking for somewhere to ask about Haemochromatosis for my sister and read this title when I looked on search bar. I don’t have it but my younger sister likely does as her ferritin was 3 times higher than range in November and similar result this month - has to wait until end Feb for a third test as GP wants to check it’s not because she was supplementing inc B12 and vit C. Then will refer her to haematology. She hasn’t been diagnosed with any autoimmune disease but our late mum had Lupus and I have Systemic Sclerosis, Sjogren’s and Hypothyroidism so I’m a bit concerned that there maybe additional health issues. She was sent a link by GP and read it but panicked and has booked herself in to donate blood in hope this might be enough. I’ve tried to tell her to wait and see what next blood tests show once the B12 is out of her system and Vit C too but she’s still panicking. So I can’t offer advice about venesection but I did meet a fellow inpatient once who said it had been life changing for her and now she only needs it yearly. Best of luck X
Please tell your sister not to panic and as you say wait until her next tests and their results. I think the amount of iron is slowly reduced over many venesections to a normal level. I don't think donating would make that difference that is needed.I have heard that once venesection sessions start overtime it makes a positive difference, which sounds wonderful.
Please let me know how your sister gets on and also take care yourself. Thank you for your advice.
I know someone who had Haemochromatosis. After the treatment and some life style changes their levels went back to normal and have stayed there. Hope that gives some reassurance.
I seem to remember my Dad had this. He used to have his blood drawn every so often and had to avoid certain food. But over time the blood draws got less and less until he seemed to manage the condition on his own.
I don’t think his was a genetically acquired condition but brought on by another medical condition. He’s sadly passed away now (at 90) but he never made much of a big deal of it.
I am so sorry to hear your father has passed but what a wonderful age 90.It certainly doesn't seem to be a factor in reducing your natural life expectancy once under control.
I am going to be positive like your father and go with the flow.
Thank you so much for your reply x
Surely the GP wasn't just relying on her ferritin level to diagnose haemochromatosis, was he? High ferritin could suggest inflammation. What did her full iron profile look like?
Sorry to interrupt your question to Mya12king - but if high ferritin is an isolated reading with no other indicators of inflammation in the full blood count - isn’t it reasonable to assume this is haemochromatosis? I’m asking for my sister because I checked through all her blood test results when I was worried about her possibly being diabetic as she seems to always need to pee, her fair skinned face is dark red and swollen looking and she’s quite overweight. She was blaming all this and night sweats on menopause and has just started HRT and prescribed oral B12 and vitamin D. All that showed was a very high Ferritin level.
Ah well, raised haemoglobin is also suggestive of iron overload so that's different. And I'm no expert so I was just posing an additional question to the original poster. Hope you find answers for your sister.
Thanks. Sounds silly but I’m actually more worried that she has autoimmune disease underlying because as far as I’m aware there’s no family history of haemochromatosis - which info says is usually hereditary
Haemochromatosis is diagnosed by several tests, including a full iron panel and liver function tests, not just by a ferritin one.
Elevated ferritin levels alone can be an indication of inflammation which can be due to several conditions, sometimes temporary in the case of infection.
Thanks so much. Presumably the GP wouldn't have mentioned it might be Haemochromatosis and referral to haematology to her unless they thought this was the likelier cause of her raised Ferritin? I did check briefly through the results on her phone and can't recall any problems with her liver function but she is being a bit ostrich now until her next blood tests later this month and I don't want to worry her unnecessarily as she already has a disability affecting her communication skills. I don't live anywhere near her so can't offer to attend GP with her as I'd like to. She takes medication for hypertension and has just started HRT.
Ah, if the GP mentioned it they must have seen other concerning results, as a haematology referral would not have been made, or, indeed, accepted, on the basis of one isolated high ferritin result. Otherwise, it would have been possible to think that menopause/HRT could be skewing the results.I understand perfectly that you do not wish to worry her, but are also concerned and want to look out for her too. She is indeed fortunate to have someone like you! I hope that help and information will be forthcoming soon. Wishing you both well.
Thanks. She’s not been referred to haematology yet - still waiting to have a third lot of bloods repeated their month by GP - just to check it’s not the HRT or other temporary issues causing this very high ferritin result. Hopefully my worries will prove unfounded but, due to her communication issues, I’m making it my big sister business to learn more! X
Hi Mya12king ,
Hereditary hemochromatosis is a monogenic disease, but its development depends on mutations in two genes: HFE and TFR2. There is a specific mutation in HFE (C282Y homozygous) that almost always leads to the disease, whereas other variants, like the one I have, have lower penetrance and a weaker impact. So far, I haven’t developed it. On the other hand, I have deep infiltrating endometriosis and adenomyosis, so it will be interesting to see how things evolve once my period stops.
I also have hemochromatosis and Lupus however my Dr’s in Wa state tried to say I didn’t have either of my illnesses after they made me anemic by phlebotomize me to much it took my body almost two years to start holding onto iron again as I was saturated with iron but my iron levels were low it was a miserable time as my joints hurt tremendously but since I have a mild version there is no damage to the organs at least that’s what the Doctors say I have found here in the US you can’t count on your family Doctor to help you manage it as they don’t read your labs and let you know when your levels are high and just say everything is fine even when levels are off and you need to phlebotomize and I have to advocate for myself and have learned to read my levels and when high contact my Gastroenterologist who then says it’s time to phlebotomize . Problem is if you have both Lupus SLE and Hemochromatosis you can’t phlebotomize at the local blood bank if you are on lupus medications (local blood bank is free to donate) if you are in medicine forlupus you now have to have a medical phlebotomy which cost a lot of money as your blood has to be disposed of since you are on the medications for lupus SLE and it might be the same for other autoimmune diseases Your sister should hold off until the Dr tells her to phlebotomize as they need to test her genetically to see if her hemochromatosis is caused by genetics or autoimmune. Mine was caused by genetics which I had one bad gene from my father and one bad gene from my mother my genes are c282y and h63d which causes mild hemochromatosis which the UK recognizes but the US medical community mostly doesn’t unless you get with an expert in the field like I did . I no longer have to phlebotomize as much as I did in the beginning maybe 2to 3 times a year and it all depends on how much red meat I eat . And they tell you to keep eating red meat when you have mild hemochromatosis as if you stop like I did you can tank your B12 levels which is another whole issue . Most of the Doctors in the US are ignorant about hemochromatosis in my experience in the beginning I saw a gastroenterologist when I moved to Washington state they sent me to a hemotologist who knew nothing about hemochromatosis,never treated anyone with hemochromatosis and her area of expertise was Cancer and who set about turning the test if my medical doctors against me by saying I didn’t have hemochromatosis after she phlebotomised me to much and made me anemic ,even though before her I had always overloaded and had been genetically tested and had never been made anemic before I saw her . She is still a cancer doctor with that organization in Seattle. She also set about destroying my whole medical care within this medical organization as then my rheumatologist then without testing decided I didn’t have Lupus SLE after being treated for it 20 something years my mom has it and about 20 family members on my moms side of the family having Lupus SLE I have never in my life experienced this type of systematic take down of my medical care within a medical organization that couldn’t believe a patient could have two illnesses at the same time from a Doctor who didn’t understand hemochromatosis and another Rheumatologist who wouldn’t recognize me having it and to explain the iron buildup in my joints rediagnosed me with idiopathic rheumatoid arthritis as not one single arthritis test came out positive for me . I hope you sister gets good Doctors to help her through all of this ,I have found that after being treated for both illnesses for years a move to a new state Washington proved catastrophic for my health until I found a top Doctor in my state who wrote the books on how to diagnose hemochromatosis and did extensive research on hemochromatosis did I get good care and had to do the same with the Lupus SLE needless to say it’s important to get with good Doctors who understand your illnesses and who are willing to be part of a team to help you get to your best health. I wish your sister well in her health care journey .
Also I’m searching for anyone else in the UK who might also have Lupus SLE and Genetic Hemochromatosis mild version with genes c282y abd H63d variants. Thank you so much 😊
I definitely have Lipus SLE and Genetic Haemachromatosis mild version (not sure which gene variants though).Have you had any treatment for your Haemachromatosis?
I feel like I'm the only one, so good to hear from another lupus sufferer with Haemachromatosis x
Hi Moxie5
I carry the weak H63D gene, and one of my two children has inherited it as well.
It's crucial for couples planning to have children to get tested, as genetics can play a significant role in health. We were very lucky—my father-in-law had the strong gene and sadly passed away, but fortunately, my husband did not inherit any. When we decided to have children, we knew my husband's status, but I hadn’t been tested because I didn't know any case in my family. I knew it later and thankfully it was the weak one.
This is more important than it seems, and I truly believe this monogenetic screening should be done from birth.
Sending a hug to everyone.
xxx
I was diagnosed with haemachromatosis in 2018 (C282Y) after a great GP picked up my high iron levels after I had pneumonia. I’m in the process of getting diagnosed with Lupus now (positive ANA result, facial rash, extreme fatigue, brain fog etc). I’m wondering if the haemachromatosis can be a trigger for lupus….?
This is a very interesting question.I am sure there is a link somewhere but are finding it hard to find any research or indeed people like us who have both.
My Rheumatologist says that they are both very desperate conditions but can have similar symptoms e.g. muscle aches, pains and tiredness.
My hematologist said the same.
It would be interesting to hear what your specialists opinions are too.
Do take care xx
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