A (very) slow death (version 2.0)

In anticipation of a shortened version of this blog that is due to be published in The Guardian on 09 September, I’ve made a few minor edits to the original article. 

It’s acceptable to do this with software, isn’t it? So this is my 2.0 version of A (very) slow death…

In my early forties I was struck down by a disease I knew nothing about. For over ten years I suffered from untreated Hypothyroidism. It ruined my career as a writer and came close to killing me. This is my story…

With the power of hindsight it’s hard to believe that nobody noticed. I certainly didn’t: although the evidence was staring at me in the face every time I looked in the mirror. My wife didn’t seem to notice: although really she did but it’s just that I wasn’t prepared or able to listen to any of the hints that she tried to drop in an admittedly uncharacteristically subtle manner. My friends didn’t notice: but they were probably amused that a weight fascist such as I had piled on so many pounds. The truth of the matter was that I was falling to pieces. My body had gone into shutdown. My brain was lost in a deep, deep fog. I wasn’t able to notice anything. I was slowly – very slowly – dying. Life was percolating out of me in a way that nobody could really notice.

It’s sounds melodramatic now to claim that I was dying. Because there was no blood – well, very little. There was no cancer ravaging my body. Most of the time I could just about function and affect some semblance of normality. I could go to work five days a week. I could do my job after a fashion. I may have felt a permanent soul sapping exhaustion that has to be experienced to be believed but then I was in my mid-forties – aren’t you supposed to start slowing down by then?

And yet I certainly didn’t feel that I was slowing down as the millennium came and went and I entered my fourth decade. Far from it. In fact, my career as a writer was enjoying a purple patch that some would say was the same colour as my prose. I’d had a bestseller in America that was later made into a TV movie, my first adult book was getting favourable reviews and I was already talking to my publisher about a follow-up. On top of this my first child was about to make an appearance. Life was good.

But life was about to turn bad. In reality this transformation had already begun a decade earlier when I awoke one morning at the foot of the stairs with a chipped tooth and my chin glued to the carpet with congealed blood. At the time I put it down to the hazards of drinking alone but now that I’m an expert I know that a rogue gene I was carrying had suddenly decided to kick in. The gene in question’s sole function is to trick the body’s immune system into thinking that the thyroid gland is a foreign invader. This condition is known as Hashimoto’s Disease (people often snigger when I tell them the name) and probably affects one in 1500 men. It sounds quite exotic doesn’t it? But it’s not really. It’s actually just the hors d’oeuvre, the starter for a main course that is far more serious.

The thyroid is a butterfly shaped gland in the throat that has a slightly undeserved anonymity. It’s not as sexy as the heart, or the liver or the lungs but it’s purpose is just as important. It produces a number of essential hormones (Ready for this? T1, T2, T3, T4, T5). Arguably the most important of these is the snappily entitled T4 which the body converts to another hormone known as T3. Both are responsible for regulating the function of every organ in our body. They are like petrol and oil: if insufficient hormone is produced things start to rust and drop off. The paint begins to flake, the engine starts to splutter and die.

When Hashimoto’s Disease begins the body doesn’t really know what to do with itself. The simple mechanics of what is happening are actually very easy to understand. Thinking it to be a foreign interloper our natural anti-bodies attack the thyroid gland. Healthy thyroid tissue is slowly replaced by scar tissue and not able to produce the required amount of T4 necessary to power our metabolism.

The body attempts to fight back by producing more T4 but often overcompensates. The result is that the sufferer temporarily becomes hyperthyroid – in other words there is too much T4 swimming around our veins. Think Marty Feldman. Think poppy out eyes. At least before I began avidly reading up on the subject this was the most that I knew about the thyroid gland. Hyperthyroid sufferers have too much petrol: they have an excess of energy, they find it hard to sleep, they do things at a slightly faster pace than most ordinary people. They also tend to faint quite a lot more often than ordinary people.

During a two-year period beginning in 2002 I began to faint a lot. The fainting usually occurred in the early hours of the morning after I had awakened desperate to answer the call of nature. Then the weirdest thing would happen: I would be overcome with a strange feeling of dizziness and nausea and the feeling that I was about to collapse. I would awaken minutes or hours later confused and disorientated on the bathroom floor. When a fifteen stone man collapses he becomes a dead weight. And when a dead weight hits a hard tiled floor bad things can happen.

First there were the obligatory minor cuts and bruises: a cut on the forehead, another on the chin. A broken nose that happened when my head hit the side of a table. Bruised ribs. And finally third degree burns on my back caused when I collapsed unconscious against a red hot radiator. It’s quite an impressive scar actually. Butterfly shaped ironically. Kind of like a natural tattoo. It gives me a touch of character on the beach. I’m just lucky it’s not my face that ended up being cooked by that radiator.

That particular bad thing resulted in my first visit to hospital, where bits of wire were taped to various parts of my body and I was informed that I had a heart condition; a diagnosis that was later rescinded. None of the specialists there thought to check for a thyroid condition. This was understandable, though. It was busy, it was the middle of the night, and I had no history of thyroid trouble.

And none of the specialists that I saw about my hip problem thought to check for a thyroid condition. In the mid-nineties I had slipped on some wet leaves while out shopping in Soho. It was the most absurdly minor of injuries but it simply refused to heal. As the years went by I saw numerous specialists about this. I had x-rays. I had physio. Nothing seemed capable of ridding me of the permanent limp I had acquired that beautiful autumn morning. Eventually after years and years of pain I had an MRI scan and I was told by another specialist that I had a delightfully named condition known as Avascular Necrosis. Basically, something had caused the blood supply to be cut off from my femur and the bone was dying like a prize pot plant starved of water.

A man in a bow tie and red braces cheerfully asked me if I was ‘free in December’, because if so he could fit me in for a hip replacement operation. It would only cost, he told me, £16,000. Nice work if you can get it.

Another specialist told me that he would like to drill holes in my femur head using a technique known as Core Decompression. When I Googled this technique I discovered that it was notoriously painful and had only a 5% success rate and that nobody seemed to know why it might occasionally work. Not to mention up to 26 weeks on crutches. I politely declined. Well it wasn’t that polite if I’m honest.

Yet another specialist gave me the best advice: ‘Do nothing until you can live with it no longer,’ he said. And that’s what I went for. I know that a hip operation in the future is unavoidable but I can live with intermittent pain and a limp for the time being. As I continually and tediously mention: not one specialist thought to check for a thyroid condition. Had they done so they would have learned that avascular necrosis is one of the many symptoms of a malfunctioning thyroid gland.

Likewise if any of the doctors that I visited had done a little research they would have discovered that the seemingly ever-present colds that made life miserable were linked with my thyroid, that my psoriasis, my debilitating joint and back pains (holding a baby in my arms would condemn me to months of constant pain), my dry hair and scaly skin, carpal tunnel in my fingers, frankly disgusting diarrhoea, my agonising bouts of depression and panic attacks, my inability to sleep at night, my terrible weight gain, trombone-like snoring and my chronic unspeakable fatigue. All of these problems stemmed directly from that little butterfly gland in my neck. And yet nobody knew it.

A more curious symptom but equally worthy of mention was the sound that my throat made. At first it was funny when my throat literally began to scream. If you’ve ever hear Rob Brydon do his ‘man in a box’ trick you’ll know what I’m talking about. When I lay in bed at night my throat would emit a high-pitched scream that was astonishing to behold. It was like someone or something was trapped in there and crying out to be released. Once the laughter had subsided, irritation set in. It was difficult enough for me to sleep at night without an extra person in bed with us. I would lay awake at in the early hours angrily willing my throat to stop making that noise. I would change position. I would toss and turn. Nothing could stop it.

Yet another symptom of a misfiring thyroid is an important one for a writer: when one is hypothyroid (don’t forget that I didn’t know that I was at the time) it is almost impossible to concentrate on anything for extended periods. This mean that I was hit by what I believed to be the most profound case of writer’s block since Moses finished the Ten Commandments. It was simply impossible for me to write. I became an expert at starting things and never finishing them. I would begin a project full of enthusiasm but within days I found that I was simply no longer interested in doing any more work. I have a hard drive full of unfinished manuscripts. My wife told me that I had lost my ‘mojo’ and she was right. I couldn’t write. I could only go through the motions. And this only increased my depression, my sense of worthlessness, and my inability to write anything. Anything at all.

By 2012 I had been suffered from an under-active thyroid gland for well over a decade and I was a complete mess. My weight had ballooned to almost 16 stones despite constant dieting. I awoke most mornings at four or five am and was consequently exhausted by 9.00am. After taking my daughter to school I would often go back to bed and sleep for three or four hours before going to pick her up and then snoozing some more. When friends came over it became something of a standing joke that I would often fall asleep on the sofa. I limped continually and took pain killers to try to offset the ever-present ache in my hip. Apart from a couple of books on photography (which I simply do not recall working on) I’d had nothing published since 1999 with no chance whatsoever of remedying this situation). I felt constantly sick and drained of all energy and motivation. I really was slowly dying.

People were talking about me behind my back. My mother-in-law, a nutritionist, was advising my wife to get me checked for diabetes. My wife gave me a big speech about ‘approaching fifty’ and the need to go for a medical MOT. I was not adverse to this until I found out what it would cost.

The thing about Hypothyroidism (the opposite of Hyperthyroidism) is that when the body does not produce enough T4 the symptoms can so often be confused with signs of ageing. We do get stouter as we get older. We do need less sleep. We aren’t in the same condition as we were when we were younger. Add this to the fact that I was the father of a young child and who wouldn’t be tired?

And then one day I went for breakfast with some friends. Siobhan, a pretty Irish girl, looked at me and said matter-of-factly ‘Have you had your thyroid checked?’

It had never occurred to me to do this because I knew nothing about the thyroid. Nothing except Marty Feldman and poppy-out eyes. It had never actually occurred to me that I was ill. This is yet another aspect of a thyroid condition: it’s like Chinese water torture. The onset of the symptoms is so slow and pastoral that it’s easy to miss what’s going on. It’s not like a heart attack or a stroke in which the physical manifestations of the illness are instant and in your face. It’s the sort of disease that you might never know that you had until it’s too late and you’ve died of it. It slows the body and it slows the brain until you’re living in a fog and you can’t see anything around you.

I went for a blood test and the doctor rang me within 24 hours and left a voicemail. A voicemail from your GP is seldom good news. I thought it had to be cancer. He called me into his office and showed me a piece of paper. When the thyroid gland is under-active yet another hormone comes into play. It is called TSH (Thyroid Stimulating Hormone) and is produced by the brain. The function of this hormone is to let the thyroid know that it is producing the correct amount of T3. In a normal person the level of TSH in the body runs from approximately 0.5-4.5, although many specialists argue that anything above 3.5 is dangerous. Mine was 99. Other specialists that looked at my test results laughed when they saw this figure, claiming that the test had to be wrong. Except it wasn’t.

I was given little white pills to take every day for the rest of my life. The pills synthetically replaced the T3 hormone that my body was not producing. I undertook blood tests every month in order to ascertain the correct dosage required. And magically, amazingly, within a fortnight things began to change.

Thanks to Google it did not take me long to become an expert in the Thyroid gland. Among the multitude of research available online was one common story: people who suffered from an under-active thyroid gland spoke of a ‘fog lifting’ when they were placed on medication and I could understand exactly what they were talking about. It was as if I could suddenly think freely for the first time in years. The pain in my joints and back slipped away. I began to sleep. I had energy that I had forgotten I ever had. I smiled. There was colour in my cheeks. I lost thirty-five pounds in weight without hardly trying. I still limp, however.

More importantly I can work again. I can write. I’m not saying that I am the best but I’m going to try to be the best I can be. Since January I have written a kids book for my daughter and I am midway through an adult thriller. I have a lot of catching up to do. A decades worth of catching up.

Naturally I have my bad days, my relapses. Sometimes the tiredness returns, followed by the depression and the bad tempers that can cause bitter arguments. (In fact, as I make amendments to this piece I’m in the midst of over three weeks of chronic exhaustion.) But in the main I’m pretty much the person I was before I began collapsing way back in the 1980s and the fog descended.

It’s just like starting over. I have no agent. I have no publisher (and there’s a good chance that no publisher will touch me with a barge pole given the rather long sabbatical that I have taken). I have to begin my career from scratch.

So what’s the point of me writing all this down? Well firstly it’s to prove to myself that I can. Steve Jobs said that great companies ‘ship’. And in order to succeed we all have to ship. This is me shipping. Secondly, maybe there’s someone out there who’s going through what I’ve gone through. And maybe they’ll read this and give their doctor a call and demand a blood test. Because in my experience with doctors and specialists it’s down to you to make the call.

They never call you. You have to call them.

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5 thoughts on “A (very) slow death (version 2.0)

  1. I struggle with Hypothroidsm, Dr’s in Hosiptal didn’t tell me my TSH lever was high. But needed help with how I felt and so I appied for my records. I now relate to what is happening to me , but Dr’s will not give me any medications and my symptoms are getting worse now daily. Feelings numbness on top of head, sides of mouth, palms, pain in joints, capal tunal in fingers. Foggy head most of the time. I can not conentate and writing is impossible and I forget, I can’t think straight and all the feeling the suffer is too much. I was articulate before all this.
    It stated early morning when I went to the toilet. I had been suffering constipation for a few months. I stuggled on the toilet and felt strange. I stood up, I had ringing in my ears and eveything spinning. I went to to bathroom floor. When all passed away I got up and felt disorientated, shaky and shaky voice. My brain felt as if it was on go slow, the same with my speach. I am really struggling in life because no one listen to ALL of my symptoms

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  2. Hi LK. You say your doctor will not give you meds? Well the first thing you have to do is change your doctor. Seriously. Change your doctor and demand meds. I run a FB group called Hypothyroid UK. Please join. There are lots of people there who will help you. Ian

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  3. Thank you, Ian, for your words of support.
    I am currently asking for second opinion, as my Dr’s are saying that I don’t need meds for Hypothroidsm, even through I have so many symptoms. I am seriously struggling with this, and they just keep sending me to different consultants, I.e for circulation, an abomen scan for weight gain……, everything comes back normal, other than thyroid. My TSH keeps up and down like a yo-yo; always above range or on the top. I have been 10, but they say it’s reduced some……. I am so tried of it all. They even say depression, which I say to them: “if do get it, it will be because the medical profession have let me down”. I keep trying to carry on strong, but it is intolerable with these feelings .
    I will have to join the group you have, but I need to make FB account, that is not business

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