Haemochromatosis - could affect 1in 10 women 1 in 5 men causing fatigue joints

[EvaHarknessRose]

It was thought to lead to diabetes, liver disease and severe arthritis in about one in 100 carriers but new research has suggested the true level could be closer to one in 10 among female carriers, and one in five for males

www.bbc.co.uk/news/uk-england-devon-46891782

My dad has this, my mother wasn't a carrier. We have always thought it was very rare so it's interesting to read that it's quite common.

This thread title is really misleading, it is absolutely not the case that it affects 1 in 10 women/1 in 5 men.

Yes my aunt was ill for years till a locum thought to check her iron levels. I think the damage was fine though sadly. My dad is a carrier. Ironically I've had some issues with low iron so I know I don't have it.

The thread title links the article which is about the research finding that it affects many more than thought, reallybadidea? I found the research of interest and wanted to highlight it.

I think it might be badly reported...

I think the findings might be that of those who carry the faulty gene (incidence not stated) 1/10 women & 1/5 men are having serious health effects and need active monitoring to avoid bad effects.

They thought only 1/100 women who carry the gene were having bad health effects.

I dunno how many people have the gene, will try to look it up...

My colleague was affected. It was recognised when he was quite young so he long had active management. He had a slew of possibly related problems going on. Case of active management finding too many maybe problems?

It's an issue for women as when menstruating they might avoid any issues through regular blood loss. It can become a problem after menopause. However it's seen as a 'male' issue as obviously men have difficulty with symptoms at an earlier age, so often not thought of as being something to investigate in women struggling with undiagnosed symptoms, as was the case with my aunt.

You can request a test that checks to see if you've got the gene which is what my dad did and so told us in case we ever felt the need to check.

This article might be as technical as I can understand.
Seems to say that of 451,243 people age 40-70 yrs old, 2,890 participants (0.6%) had 2 copies of the faulty gene, and of those 1/10 women & 1/5 men had signs of ill health that could be linked to their genetics.

So 0.06% of women (age 40-70 yrs old) from general population are affected (someone correct me if that's wrong interpretation).

Presumably is cost-effective to screen for those people, hence why in the news.

ps: people can have the haemochr disease with no copies of the main faulty gene, or with only one copy, or with other faulty genes, plus there are other versions including juvenile, so the real risk has to be > 0.06%, maybe more like 0.2% of total population including blokes.

Reading with interest, as I am waiting for my genetic test for this

Thanks for the detail - very interesting and clearer than the article.

Do people with fatigue and joint issues routinely get tested to exclude this?

I’ve got the H63D variant in the HFE gene, it’s from my Irish ancestors apparently. The report says I’m not likely at increased risk of hereditary hemochromatosis tho. So I don’t know why it bothered mentioning it.

My father in law has been just diagnosed with this and my husband is having tests to determine if he has it too. His mother has a form of cancer that could have been caused by hemachromatosis but we aren't sure (they are low contact). If both his parents are affected then it's 100% that he has it too.

He has been suffering with arthritis in recent years despite only being in his early 40s and I'm very worried it is caused by this and other damage to his organs may have occured . Hopefully it has been discovered in time to be managed with minimal health effects.

According to 23andme , I am a carrier of one of the faulty genes but unlikely to be affected. I guess that means I will have to have DD tested as she could also have it.