How to damage your liver - lessons from your genes

I recently posted a question on the "question" section asking if there were people out there with haemochromatosis and after three days, I had no answers, so I asked a supplementary question - who had heard of it. I then realised that the chances of people reading that were remote once their mental answer was "No" so I decided to write this blog entry. as well.

To bring you up to date, then, haemochromatosis is a genetic disorder which prevents the body from using the iron taken in with food. The consequence is that iron is stored in major organs, including the liver, and can cause an array of symptoms often thought typical of ageing, including:

heart problems (arrythmias etc)

diabetes mellitus

arthritis, including need for hip and knee replacement

bronze or grey discolouration

male impotence

cirrhosis

liver cancer

While these conditions can arise independently, they can also combine as a consequence of haemochrmoatosis and if you are identified as having one or more of the above, it might be worth asking for a test of your ferritin level - this is the measure of iron in the blood. Normal range is 12-300 ng/ML for males and 12-150 ng/ML for females. Once identified, treatment is simple - weekly venasection (like blood donation) until levels return to normal.

What can happen?

When I was 53 I was diagnosed with hypertension and shortly after that, diabetes mellitus. Around that time, I was proudly displaying my sun tan (which always seem to last quite some time after a holiday). Three years later, I had a hip replacement and some time after that, a GI bleed, which led to a diagnosis of cirrhosis. In 2011 I was diagnosed with liver cancer and had a transplant in December that year. My diagnosis of haemochromatosis was made in 2005 but I think it took everyone a while to add the conditions together and lay at least some of the blame for my condition on my genetic inheritance.

So, if you have more than one of the above, ask for the test. If you are positive, treatment is quick, (almost) painless and can avoid more serious consequences down the line. Left untreated, it can lead to killing diseases. A positive test will also be a signal to your siblings and children to have a test also.

For more information, you might want to contact the Haemochromotosis Society, a national charity supporting sufferers. It supports regional groups dotted around the UK and these meet for support and encouragement. Contact

haemochromatosis.org.uk

for more information and local group contacts.

If you have any questions, please don't hesitate to ask.

Mike

9 Replies

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  • Thanks for that information Mike, I had a look at the website you've linked to as my hubby has a number of the symptoms/conditions you mentioned though having looked at the website I think I can rule it out in my hubby's situation though I will bear it in mind. He is currently having lots of blood tests for anaemia and has low iron/haemoglobin levels.

    I am sure others will find it of interest too.

    All the best.

    K

  • Thanks for the info Mike. Some years ago I remember having low ferritin and arrythmias. Never linked them. Still have arrythmias periodically but haven't taken too much notice of ferritin in last few blood tests - need to check it out. Have had family member with liver transplant due to alpha anti trypsin deficiency. Also bit of a sore knee but not too bad. In all, due to your tip I think I should get properly checked out.

    Seems to be a bit of a problem with our medical service - our practitioners tend to look at single symptoms in isolation.

    Good luck with your problems & thanks for your contribution

    Arrabella

  • Thanks Mike. I did wonder what it was. I have had a variety of those disorders you mention but they are all identified with different conditions: New knees to undiagnosed talopes; Heart ahrrythmias and angina related to high cholesterol and smoking; Cirrhosis due to Hep C (though having A and B previously doesn't help); erectile disfunction due to the blood pressure tablets and age lol. Shall mention it though when I see the consultant next which is due when, finally they stop banding my varacies. Thanks again

  • Hello Mike

    I've just read your post and would like to share my experience.

    I was diagnosed with Haemochromatosis in 2001 by genetic testing as two sisters had the condition and my ferritin level was 3200. I had six months of venesections which brought my ferritin down to the maintenance level. I was under a haemotologist at the time and managed to have yearly scans on my liver plus a biopsy in 2004 which luckily showed no iron deposition but mild fibrosis due to my being overweight, a diagnosis of non-alcoholic steatohepatitis. This changed, however, when in 2005 I came under a hepatologist who cancelled my scans. Last year I was diagnosed diabetic and put on metformin and so at my annual consultation with the hepatologist plucked up the courage to ask for a scan and even a Fibroscan if possible. This was done and came back with a reading of 8.7 and a letter from the hepatologist saying I had stage 2 possibly stage 3 fibrosis.

    I am now angry with myself that I never took seriously my weight problem, I was five stone overweight, did not exercise and was in denial about the matter. Luckily I have managed to lose most of the excess weight and the last time I saw my gp he said I was 'cured' of my diabetes, a little white lie I think. I'm lucky in that I don't drink and certainly cut back after the initial diagnosis.

    I can say that I have a medical condition that was being treated by the NHS but that I was jeopardising this by my lifestyle and must take some responsibility for the damage done to my liver. I do not know if there is a natural progression to stage 4 and cirrhosis or even that it's possible to reverse the early stages of fibrosis but I hope to find this out at my next visit to the hepatologist.

    Best wishes Tom

  • Hi Tom

    Thanks for sharing this: your case illustrates the problem of undiagnosed GH. I am assuming that you are getting a regular MRI scan to keep an eye on your liver. It is well worth asking for. As to "cure" for diabetes, mine has been well maintained (Metformin) for quite some time and when I asked the diabetic nurse if I was cured, she looked somewhat wry. I assume that meant "no". I realise I should have pushed her for more information!

    Best wishes, Mike

  • Hi Mike,

    Your post regarding Haemachromatosis rings bells with me, not because I have it, but because my brother did.

    Almost 20 years ago my older brother was suffering most of the symptoms which you describe. It took years

    for him to get a diagnosis by which time he had liver cancer and could not be saved.

    When I developed liver problems I had a mildly raised ferritin level and I feared the worst, however genetic tests

    showed that I was in the clear. My own problem is NAFLD. I agree that everyone should be aware of this

    potentially fatal condition.

    Regards, Chris

  • Thanks Chris. There are too many people who suffer your brother's experience because of the challenges GPs face of co-morbidities and the assumption that people of a certain age are just accumulating conditions. We are working on a proposal to raise awareness among the public and their GPs and will keep this community informed of progress. Best wishes for your own treatment.

    Mike

  • I did not see your original post, I have haemochromatosis, or at least I think I have, they have done tests that took months (genetic tests) to see if my family should be brought in for testing, and they now say they (family) do not, yet I have it...... to be fair we are just at the point where they are reading the test results, and I have Hepatic encephalopathy (makes comprehension dubious to say the least) I did my own venus section by having a major gastric bleed and the subject of my iron stauration is the issue of the week - so I am a tad behind the wave right now, should be more with it in a week or so.... I was picked up with haemochromatosis as I have PBC and am now on liver transplant list, seems I have 2 things attacking my liver, PBC and haemochromatosis - I may come back to you if I do not get clarity from my medical team, Charlie.

  • Please do Charlie. Mike

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