Diagnosis: Haemochromatosis

I wonder if I should have named this MISdiagnosis: Haemochromatosis really…

So yeah, anyway, I stumbled into a conversation on Twitter tonight about the state of the hospital system in Western Australia. The discussion stemmed from a report on the number of deaths in the WA hospital system, and one of the leading causes was misdiagnosis by doctors.

This was where I entered the discussion.

I’ve simplified the events that occurred, but a general rundown follows…

A few years ago, I lost a dramatic amount of weight in a very short period of time. It was unexplainable. I went to the doctor about it, understandably concerned about my health.

You have an eating disorder. You need to see a specialist.

Ok, no. I am a fit and healthy person. I exercise and I eat well. At the time, I had no dietary restrictions beyond not being able to eat dairy due to an allergy. I ate whatever else I wanted. I wasn’t anorexic. And I didn’t have bulimia. But the doctors were adamant that I had an eating disorder regardless, so I went and saw the specialist at the hospital in Perth that I was referred to.

You have an eating disorder. There is no other explanation for your symptoms.

I was still losing weight. My muscles were basically starting to die. But I was still eating normally, I was still exercising.

You have an eating disorder. There is no other explanation for such dramatic weight loss for someone your age. It’s not cancer.

It’s not cancer? Yeah, thanks for that. Helpful. At this time I was eating a lot more than usual, trying to put weight back on. But no matter how much I ate, I was still losing weight.

I am 157 cm tall (5′ 2″). My weight, which was usually hovering around 50-52 kg, had dropped to 32 kg. I had lost 20 kilos in about 6 months. And for someone who was relatively slim in the first place, it was very noticeable. I had basically gone from wearing an Australian size 6-8 (US size 2-4), to not being able to fit into a US size 0 – they were too big for me. Seriously, a US size 0 was too big.

You have an eating disorder. You need to eat more, and you need to speak to a psychologist about it. You’re in denial. You’re lying to us about your food intake.

I spoke to the nutritionists, psychologists, and other specialists that they referred me to from time to time. I mean I’m not a medical doctor, I just have a PhD. Maybe I did have an eating disorder? Maybe all these symptoms were from an eating disorder that I hadn’t heard about before? I knew it couldn’t be anorexia or bulimia, but maybe it was something else?

This dragged on for close to a year.

I went back to Queensland at one point and caught up with some friends from uni. I had studied at James Cook University in Townsville for both my undergrad and PhD, so I knew quite a few people from university. When you’re around for that long, you get to know other people who’ve been around a while as well. And who tends to be around campus quite a lot? Med students. Because unlike most degrees in Australia which run for 3 years, med school is 6 years. Out on the town one evening for dinner with some old friends from undergrad, I ran into a friend who’d just finished med school and was starting work as an intern.

Bearing in mind that I had lost a seriously dramatic amount of weight at this point, he was shocked to see me looking the way I did. He asked me what was wrong, and to be honest my response was effectively “I don’t know“. I’d been seeing doctors about it for about 18 months, and the conclusion was that I had an eating disorder. I was pretty sure I didn’t, but I wasn’t the medical professional.

We discussed the symptoms for a while, and eventually he asked if I had been tested for haemochromatosis. I’d never even heard of it before, but I was a scientist who’d studied both chemistry and biology at some point in my life and figured “haemo” meant blood, and “chroma” mean iron. However, I assumed it meant “low iron”, because there’s always reports about women suffering from low iron levels.

Yeah, I was clueless. I Googled it when I got back to my hotel, and you can imagine my reaction. Low iron? Not so much. Astronomically high iron? Accurate.

Now my doctors in WA weren’t so stupid as to have not done any blood tests in 18 months. I’d been to the pathology lab more times than I could count. I knew that I had high iron levels, that was blindingly obvious on all the tests. They had been increasing over time as well. But the doctors thought that was the result of the eating disorder.

I got back to Perth and asked my doctor to run the test for haemochromatosis. They argued that I didn’t fit the profile and didn’t want to bother with it. What’s the profile for someone with haemochromatosis? Middle aged male of European descent. Ok…That wasn’t me. I’d barely turned 30 – and I’m female. But hey, I was of European descent! It took some time, but they eventually ran the test…

Lo and behold? Yes, a 30 year old female had haemochromatosis. What are some symptoms of haemochromatosis?

  • Unexplainable weight loss?
  • Liver problems?
  • Hair falling out?
  • Irregular heart beat?
  • Lethargy?
  • Mood swings?

Now, don’t get me wrong, I can totally understand how a doctor might initially think that these symptoms were the result of an eating disorder. Initially.

But here’s the thing, an eating disorder was not the only explanation. Despite me repeatedly arguing that I didn’t have an eating disorder, the doctors in the WA hospitals were adamant that it was the only explanation for my symptoms.

In 18 months, my health had deteriorated. Not only had I suffered dramatic weight loss, but I had subsequently suffered from fairly severe liver problems, which have turned out to be more or less permanent. I also had some damage to my kidneys, but that pretty much disappeared as soon as we knew what was wrong and started managing my iron levels.

As a result of the liver problems caused by the haemochromatosis, I have had to totally overhaul my diet. This is what forced me to go vegan, I have problems with animal protein now. This is what forced me to stop drinking alcohol – not that I drank much in the first place, but now it’s simply not an option. Add this on top of the fact that the haemochromatosis itself demands a low iron diet? And a low vitamin C diet because vitamin C increases your body’s ability to absorb iron? It’s miserable trying to find stuff to eat.

Now, throughout all of this, I never actually felt sick. I was able to go about my daily life as I always had – aside from the constant doctors visits.

But bringing me back to the original conversation about deaths in the WA hospital system due to medical misdiagnosis? I wonder what the outcome would have been for me if I hadn’t run into my friend in Townsville? How long would the doctors in the WA system have persisted that my symptoms were the result of an eating disorder? I mean, yes, I’m alive, and eternally grateful for that. But I also have permanent liver damage. And had (thankfully temporary) damage to my kidneys. How much of that damage could have been avoided if the diagnosis hadn’t taken so long because I didn’t happen to fit the typical profile of a haemochromatosis patient?

I won’t lie, I thought I was going to die at one point. I kept losing weight and I couldn’t understand why. If I hadn’t been correctly diagnosed and I had continued to lose weight, I have no doubt that eventually I would have suffered brain damage and that my heart would have failed.

So based on my own miserable experience with the WA hospital system, I can’t say the findings in the report are particularly surprising. It took 18 months for me to receive a correct diagnosis – and it didn’t even come from a doctor in WA. It came from a brand spanking new med school graduate in Queensland.

For the record, this is why I am so angry with the government proposal to terminate Medicare benefits to anybody earning over $88k a year.

I had to go through 18 months of multiple visits to the GP each week. Twice weekly visits to the pathology lab. I had to visit the radiology lab on average twice a month. And on average, I saw a specialist once a fortnight.

Let’s add up the cost of that if I wasn’t able to access Medicare:

  • 3x GP visits per week @ $70 each: $210/week
  • 2x pathology per week @ $60 each: $120/week
  • 2x radiology per month @ $800 each: $400/week
  • 1x specialist per fortnight @ $400 each: $200/week

That equates to $930/week just in doctors visits each week, over a period of 18 months. That’s over $70000 in medical bills just to get an accurate diagnosis. Before I was even able to start treatment.

Now I earn an acceptable salary – over the $88k threshold the government is proposing at any rate. I don’t consider myself to be poorly paid. But if I was denied access to Medicare, the cost of accessing medical care during that 18 months would have crippled me.

A few days ago, one of my friends naively said “What are you complaining about? The only decision you need to make is whether to pay for a visit to the GP or whether to buy a bottle of Moet!

And I think this is where the problem is. If you are earning over $88k and just having to visit a GP a few times a year, paying the $70 for each visit isn’t exactly going to be a massive hardship. But what happens when something goes seriously wrong? What happens when the doctors misdiagnose the problem and you simply can’t afford the cost of continuing visits to the doctor to figure it out? What happens when you’ve got a chronic illness that requires constant medical treatment for the rest of your life? It’s not so simple in those situations.

If I’d had to pay that $70000, that would have literally taken every cent I earned. I wouldn’t have been able to afford rent. I wouldn’t have been able to afford food (but hey, maybe I’d finally develop that eating disorder everyone thought I had?). I wouldn’t have been able to afford electricity or gas.

Now, I hear you ask “…but what about private health insurance?“…

Yes, I do in fact have private health insurance. But of course it’s not that simple. Let’s just say there’s issues getting coverage for “pre-existing conditions” and leave it at that.

Anyway, long post over now. The WA healthcare system is a mess. The government is a joke. I wish the worst on both Tony Abbott and Joe Hockey. Leave Medicare alone. My diet makes my life miserable. I want a steak topped with prawns. And a bottle of vodka.

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