Sore feet

 Both of these feet are mine, the left foot’s swollen because I had to walk to a doctor’s clinic, today.
It was nice to get out, have some fresh air, listen to people talk and laugh. There were a couple of people in the doctor’s waiting room. Then she called me. It was my first visit to an arthritis specialist.

She ran a thorough physical exam, asked me all the right questions, then told me she was going to order an MRI and have me come back in six weeks. She told me I have a form of progressive osteoarthritis, related to hemochromatosis.

There’s a point where you tune out. You don’t do it deliberately but you’ve heard all these words before, from someone else or you’ve read them and they just become a jumble and they assume a trance like rhythm of their own.

You ask questions, you get answers, smiles are exchanged, nods are passed around, even handshakes, I put my hat on, the doctor lifts her pen. I go make my next appointment, pay for this one. I limp home. Life on the trail of hemochromatosis.

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Who eats iron?

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Everyone absorbs iron in their diet. Some of us can’t get rid of it as easily as others. Are there do’s and don’t, a special diet, forbidden horrors? Simple answer: no, no and no.

Present a medical condition that has something to do with diet and all the crazies come out of the woodwork. Iron absorption is a natural function of the human body. In people with hemochromatosis, it just happens to hang around. That iron is absorbed through your diet but it doesn’t follow that a decrease in iron in your diet will, necessarily, decrease iron deposits in hemochromatosis.

All food groups have iron and we only absorb a small fraction of that iron. There is some speculation that the iron we absorb is of the heme variety, as opposed to the non-heme, but that research is inconclusive. There is another theory that a defect in hepcidin, a circulating peptide produced by the liver, is the defect in hemochromatosis that causes greater intestinal absorption of iron. Heme iron is more prevalent in red meat and vegetarians have lower serum ferritin levels and so the dots get joined and two and two can become five.

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irondisorders.org

 

Iron supplements in food were introduced as a marketing gimmick in the 1950s and that’s about all it amounted to, a gimmick. Ok, don’t eat raw shellfish, not because of the amount of iron they do or do not contain, but more usefully because of other bacteria.

The one that really gets me going, though, is the assertion that cast iron pots could kill you. Well, I agree, if you want to swing a 12″ skillet at someone’s head. Those are heavy suckers. But absorbing killer levels of iron from a well seasoned skillet? Codswallop.

Look, the way I see it, is if you eat sensibly, you’re fine. Don’t take health supplements with concentrated iron and go easy on the vitamin c, particularly around meal time, as it facilitates the absorption of iron.

As a diabetic, my diet has always been based on three principles; low fat, no sugar, high fibre. Add plenty of fresh vegetables and fruit in to the mix along with a judicious balance of grains and nuts and you’re on a winner. Just because you have a condition with an iron overload doesn’t mean if you eat less iron, it will help you. Your body will still need iron and it will, if you’re eating a good, balanced diet, find it, too. The problem for people like us is getting rid of the excess, once the body has used what it needs.

I like to eat fish, particularly hake and mackerel. Coffee, I’m told, should be avoided but hell, Starbucks notwithstanding, I enjoy a sup of java. At the same time, a good friend of mine turned me on to Japanese Matcha tea that has a high tannin level, is an anti-oxidant and can lessen, if not entirely prevent, the absorption of dietary iron. And apart from anything else, a good cup of Matcha a day can get you involved in some wonderful tea making ritual.

Alcohol? ok, we should all drink less and yes, there is iron in beer and spirits, though a glass of wine is not to be sneezed at. I’m sure this has ruffled a few feathers but I don’t like fad food fascists. Eat sensibly and not in excess, you’ll be fine.

Please don’t take what you’ve read here as the gospel, according to how to behave with hemochromatosis. I’ve got my own problems to deal with and that involves staying healthy by eating as sensibly as I can. All I do is write about it.

 

 

From Crack to Crock

Enjoying the crack is something that comes natural to us Irish, even if we’ve had to alter the spelling to the Gaelic version, craic, so it’s not mistaken for an illegal cocaine derivative. Unfortunately, after a life time of craic , I’ve turned in to a crock, thanks to this Celtic curse, haemochromatosis.

One of the biggest problems with haemochromatosis diagnosis is it’s hard to spot and is often treated for its symptoms and not for the condition itself. These days people are becoming more and more aware of HC, particularly doctors, so its indicators are more frequently screened than ever before.

Sixteen years ago, after complaining about pains in my fingers for at least three years, I found the clue that alerted me to whether my problems stemmed from an overload of iron in my blood. Typically, I assigned the finger pains to the rigours of tapping on typewriters, daily, rushing to beat deadlines. Although I’d been using laptops for years, by then, my early day typewriter training came from hammering on a monstrous, non-electric newsroom typewriter, usually with just two fingers, the index fingers of my left and right hands.

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Professor John Crowe, a distinguished gastroenterologist and then Master of the Mater hospital in Dublin, presented a paper to a medical conference in Dublin that highlighted the prevalence of this dietary iron disorder among Irish people and people of a Celtic origin. It was covered by a Dublin newspaper and in that report there was a simple list of the main indicators for hereditary haemochromatisis. Once I read arthritic pain in the left index finger and an unseasonal tanned look, he had me. I contacted my doctor who did a quick blood test, for serum ferritin, I found out, later.

Now my fingers were sore but the tanned look? Well, y’see I’d always tanned up deepy and quickly, come the summer and always had a complexion that, throughout my life, has had people wonder where I’m from because the typical Irish complexion is not so much white as ‘transparent.’ While I remember, as a child in short trousers in primary school being referred to, by other mothers, in the totally pre-PC days of the early ’60s, as ‘the wee darky.’

So the test results came back and the diagnosis confirmed and before I knew it, blood was being drained out of me by the half litre on a weekly basis.

The unfortunate thing for me, though, was the horse had long bolted from the barn. Within two years of that diagnosis, along with the diabetes that first manifested itself eight years before that, I began to experience serious problems while walking. It began with a dull ache getting out of bed. Within a year, running was out of the question and walking had become an assault course strategem.

You only realise how much you take simple physical activity for granted, when those simple acts become painful manoeuvres. Descending a stairs became almost as painful and perilous as climbing one. If there were steps to be climbed, I’d have to think out my route in detail and in advance so I could minimise the most challenging obstacles. I remember being so thankful when footpaths became wheelchair friendly. Crossing a street became something I had to plan, very carefully, particularly since lifting my leg high enough to negotiate a step became as calculated as an Olympic high jump attempt.

Pretty soon, I was being lined up for my first hip replacement as osteoarthritis was the cause of my motor difficulties.

Was I surprised? Yes, since I’ve always been an active person and loved walking and cycling, I was, as we say in Ireland, on a prolonged Egyptian holiday: I was in denial. For two years before I was told I needed a hip replacement, I visited chiropractors, physiotherapists and osteopaths. Then, after the diagnosis and a date was set for the operation, I refused to let it get in the way of a holiday trip I’d planned with a friend, to travel to the south of Spain, by motorbike.

Now the prospect of throwing my leg over a pushbike had already become an exercise that might entertain the Marquis de Sade, so getting my leg over a 1200 cc Harley Davidson Centennial for a marathon road trip, well, that was my tribute to the notion of mind over matter.

The first thing I did was visit an osteopath in Tipperary who, I was told, performed miracles with injured professional jockeys. All I wanted was to maintain as much flexibility as I would need to help me make the trip. It didn’t quite work out that way. Getting on and off the bike turned in to a nightmare. We had to make stops along the way at intervals of 50km or so. This lengthened the journey. Happily, for my good friend and long suffering travel companion, Dave and myself, the trip, itself was great fun and, despite the pain, an amazing elixir.

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There are ludicrously memorable moments like the time we both pulled in to a motorway garage, all leathered up and ruddy faced, on this behemoth motorbike and Dave alighted, ignoring me, to fetch himself a drink. Then I started the process of alighting that involved, first, standing up, before easing my leg over the bike then sliding to the ground, crawling to the footpath and gently, crab style, working my way up to a standing position, to the bemusement of some watching locals. That happened more than once and soon we were taking a delight in the whole spectacle.

When I got back to Dublin, ten days later, I was ready for the operation. Within three weeks I was back on my feet and the absence of pain, the ease of movement was phenomenal. Two years later I was back in hospital for another hip operation. More recently, I’ve begun to experience ankle arthritis and, once more, mobility comes with a huge pain bill. These days they can replace hips, knees and even ankles but ankle replacement for me is out of the question, I’m not old enough and anyway, I have diabetes; there’s too great a risk of infection.IMG_3932

Since prevention is not a possibility until there are advances in stem cell research, so early detection and treatment is the best way forward. But that’s a story for another blog.

Diabetes and other complications

When I was 38 and working every daylight hour and more to pay a mortgage on my first house, as well as feed and educate a young family, I got ill, something I could (pardon the pun) ill afford to do.

My weight was fluctuating, almost weekly. I was always thirsty, all the time and had taken to carrying a bottle of water around with me, long before it became a fashion accessory.

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So I was visiting our family doctor, not for myself, but for my four year old daughter who needed a check up and a prescription for her asthma. While I was there, I mentioned my fluctuating weight and thirstiness to the doctor and he handed me a plastic cup and a litmus strip and asked for a urine sample. “You could pee on the strip, too,” he told me.

I did as he asked and he looked at the strip and frowned. I found out later the strip tested my urine for ketogenesis, a condition that, along with the other symptoms, might indicate some liver disorder and raise alarm bells and suspicions. He asked me to wait, a moment, in the reception area, while he made a quick call. Two minutes later he asked me to go home, pack a small bag and then go to the local hospital where I would undergo some tests.

If my urine had set off alarms, his urgency raised me to DefCon One. So I asked him to explain himself and he told me, ‘I think you have diabetes and I want to make sure.” So would I be in hospital, overnight? I asked. “No,”he said, “this will take a week.”

And why the urgency, I asked, is this life threatening or something? I asked, surprised by his haste and a little bit put out by the inconvenience it might cause me. “Yes, it is,” he told me, “particularly because of your age. It is very rare of someone of your age to manifest diabetes like this. You’re not overweight, even if your weight has been fluctuating and you’re fit enough.”

Later that week, when the first test results indicated I had type 1 or insulin dependent diabetes. There is a 7 in 100,000 chance of late onslaught type 1 diabetes in adults between the ages of 30 and 50.

This was discovered after a battery of tests that included blood and more urine tests and a liver biopsy. The rest of ther week was spent in nutrition training and gym sessions where I was put through a diabetes boot camp and the message was drilled home: no sugars or fats, lots of fibre and complex carbohydrates and planty of regular exercise. They gave me an orange and a hypodermic syringe full of water so I could practice injecting. Then they taught me to inject myself.

By the end of that week in hospital, my sugar levels were back to normal and so began a life of daily self medication. And this is where it gets really weird. It took another six years for the diagnosis of my haemochromatosis and the discovery that this had caused my diabetes.

Now, it appears, my diabetes can not be classed as type 1 or type 2, but a class of diabetes that can only be associated with haemochromatosis, somewhere between the two but because of my original diagnosis, I’ve had to maintain my administration of insulin.

So why, you might ask, was it not diagnosed the first time, the haemochromatosis not noticed and diagnosed, saving me a measure of future grief? Well, haemochromatosis symptoms often don’t manifest themselves until people are in their middle years or, at least, over 40.

But you got diabetes when you were 38 and that set off alarm bells? Yes, that’s true but many tests were done, particularly a liver biopsy, that showed no abnormalities in my liver function. What wasn’t done, though, because of the liver biopsy results, was a ferritin test. These days, this has changed and anyone manifesting diabetes, over 30 years of age, will automatically be given a ferritin test.

At the time, I thought, hey’ of all the long term conditions I could develop, diabetes isn’t the worst. Apart from the incovenience of constantly testing the sugar level in your blood and injecting yourself with insulin, a properly controlled diabetic lifestyle can be quite healthy, if you eat good and exercise, regularly.

Although, sometimes, even those can be inconvenient but, well, that’s a story for another blog.