I felt very lethargic
MY HEALTH EXPERIENCE:WHEN MY symptoms first appeared, I thought it was just part of getting older, even though I was only in my early 50s at the time. Being a typical man, it took me a while to go to my GP and get checked out, but now I would encourage others to take control of their own health.
Eight years ago, I went for an executive check-up which showed that I had high readings of ferritin which meant there was an excess of iron in my blood. My GP was not particularly excited about this saying it could have been caused by a recent bad cold. I had no symptoms at the time so I was not unduly concerned about it.
A couple of years later, I started getting aches in my legs and arms. Then I started falling asleep in the chair which was very unlike me. Over the next couple of months, I became chronically tired and there was a noticeable reduction in my libido and zest for life. I felt very lethargic and down.
When I did go to my GP, I was referred to a rheumatologist but a scan found no sign of arthritis. The consultant suggested I go to see Prof Suzanne Norris, consultant hepatologist and gastroenterologist at St James’s Hospital who did a series of tests, including a genetic test for haemochromatosis.
I was diagnosed with haemochromatosis which is an iron overload disorder. I started venesection treatment which is also known as phlebotomy and is basically blood letting. They took a pint of blood every week for 12 weeks which is really not a big deal as the body replaces the lost blood very quickly.
The irony is that up to my mid 30s, I used to donate blood every three months. At one stage, it was suspected that I had a mild jaundice so I couldn’t donate blood any more. The fact I was giving blood regularly had meant I was unwittingly controlling my haemochromatosis.
The flag had been raised when I had the executive check-up, but my GP had not been particularly exercised about it so nothing had been done. This proved to me that people need to take control of and manage their own health.
Even though there is a very high incidence of haemochromatosis in Ireland, the illness has only really become known here in the past eight years or so. The classic symptoms include tiredness, aches and pains and a lack of zest for life so many people will assume, as I did, that it’s all just part of getting older.
When my illness was at its height, I was travelling a great deal in my job as a film producer over and back to the west coast of the States. We were making a lot of films over a short number of years so I had a hectic lifestyle.
It took about three months to get my ferritin levels back down to normal, and within a month my energy levels changed dramatically and all the negative symptoms began to disappear. I go to the specialist every year to have a liver function test because my ferritin levels were so high for so long, but thankfully there has been no deterioration in my liver.
As haemochromatosis is a genetic illness, my three brothers and sister all had tests after I was diagnosed. One brother, who is a doctor, had a significantly higher ferritin level than I had and another carried the gene but did not suffer from the disorder.
There is an argument for a national screening programme because Ireland has such a high incidence of haemochromatosis. My mother died in her early 50s of coronary disease and I often wonder now if she had haemochromatosis that was not recognised.
In conversation with MICHELLE McDONAGH
HAEMOCHROMATOSIS: WHAT IS IT?
Haemochromatosis is a hereditary condition, in which excessive amounts of iron are absorbed from the diet. This iron is deposited in various organs, mainly the liver and also in the pancreas, heart and joints. This excess absorption may in time lead to serious organ damage as the body has no way of disposing of excess iron.
Haemochromatosis is especially prevalent among the Irish and other Celtic people. Symptoms may not appear until age 30 or 40. They include chronic fatigue, abdominal pain, impotence, arthritis, diabetes, liver disorders and cardiomyopathy. For further information see the Irish Haemochromatosis Association (IHA) website haemochromatosis-ir.com or contact Margaret Mullett, tel: 01-4922705 or by e-mail firstname.lastname@example.org