There is no capital punishment in the UK.
Instead, there is punishment with a capital letter. In my case it is the letter ‘T’.
Actually, there are four of them, four little cruciform T’s in a row – and, crucially, they are: T1, T2, T3 and T4.
If they look bureaucratic and boring let me assure you that without them there would be no bureaucracy or boredom: in fact, no life at all. They are more commonly known as TSH – Thyroid Stimulating Hormones – and T3 or the lack of it is, quite literally, killing me.
You see, the problem is, that I am one of many thousands of people (one in five) who have thyroid problems: it is a situation that is growing rapidly thanks to the pressures of modern living: stress and the inability to grow decent, mineral and vitamin enriched food in an ever-collapsing soil. We are the first human manifestation of the Wasteland.
The thyroid is a butterfly shaped gland that resides in the neck in around the area of the Adam’s Apple. It controls the metabolism. There are two varieties of major thyroid problem: over-activity and under-activity: hyper and hypo.
Thanks to genetic factors, stress and a scandalous lack of due care and attention by doctors over many years, I have the latter: well, actually it’s worse than that, it’s totally collapsed – and now I have to pop pills to keep going. A small price to pay you might think, after all I’m not in a wheelchair or walking on one leg. I am, to look at, whole and healthy.
However, scratch beneath the surface and you’ll soon appreciate that all is nor well. For years I was plagued by lack of sleep, even though I wanted to do nothing but sleep, my mood went from one extreme to another. The crushing fatigue and the hair loss, the weight gain, migraines and general painful nature of the condition that seeks to push put the eyes from within is like a genetic inquisitor riding high within.
The weight is not fat, I should add, it is fluid, oedema it is termed by those in the know. It collects in the body and, because the metabolism is not working as it should, the body cannot expel it. For women with the condition this is especially distressing. Looks darling, are everything.
In the old days when your thyroid was buggered, so were you: the only option was to lay down and die. This is effectively what happened to me.
For years I’d felt and known the symptoms all too well. My psychology was up the spout, my moods swings frightening and, as for the struggle just to stay awake, well, there was even a time when I fell asleep in a London Park late one morning and woke up eight hours later in complete darkness. Not something a girl should do.
It took twenty years, yes, twenty, for me to get a diagnosis – and then it came only after I’d fallen into a coma. And let’s not talk about endocrinologists: speaking to a normal human being who has ‘specialised’ is not the same as talking to a chum who’s got what you’ve got. The only other time I was so blue in the face was when I was close to death in the coma.
The fact of the matter is that it is a lottery trying to find someone to listen. One look in the face from them and “it’s thyroxin for you – for life”: only for some of us, an increasing number of us, this is no longer true. Thyroxin is T4, it is only T4 and nothing but T4. T3 doesn’t even get a look in – and now its official.
For a number of us, around 300,000 in all, T4 (or Levothyroxine) on its own is not effective. Take it with T3 (Liothyronine) however, and the effect is remarkable: loss of weigh, loss of mood swings, no sleeping in the afternoon and it helps to fend off depression – 90% of those with severe thyroid issues are liable to depression.
But try telling any of this to doctors. Unless they have thyroid disease themselves, you are in for a battle.
And this goes to the core of the issue as to why doctors refusing to give us the proper medication when it only costs pennies to produce – at least it was.
According to reports in the newspapers last week, the NHS has not only proposed withdrawing T3 but has actively been doing so because it has suddenly become very expensive. Since 2007 the price has risen by almost 5000%!
Imagine my surprise when a few years ago I happily went online to order my usual three-monthly supply at around £25.00 only to find that suddenly they were asking for hundreds of pounds – and then thousands. The shock and the stress this induced was the very antithesis of thyroid care.
I have tried to ask doctors about supplying me with my very necessary life-support: but sometimes it was like trying to discuss peace with Adolf Hitler.
In certain instances, the NHS have relented – but not much. It has become a postcode lottery. Bureaucracy has taken the place of palliative care and T3 has effectively been sacrificed in order that management can still take home their bonusses. This is a crude way of putting it, but, as we have seen over the last twenty years, the NHS is undergoing a quiet, government led transition to the private sector – and this, in turn has led to the mixed messages of the bureaucracy now running the show – or should that be ‘ruining’?
The extent of the antipathy towards us has also been expressed in a recent and controversial article in the British Medical Journal, suggesting that the marker blood levels needed to qualify for treatment with T4 should be increased – doubled in fact.
For years I was going to my doctor feeling awful only to be told to ‘pull my socks up’, and for years they were taking blood tests and coming back with negative results, only for me to realize, as my health progressively got worse, that they were not testing it as thoroughly and I had assumed they would. I would have to book ahead for the test. Logic told me that as it was in the blood, if I felt alright on the day then, obviously nothing would show up. When I felt awful that was the time they needed to take blood – to see what was in it.
And then the collapse. My partner had noticed how I was going rapidly downhill towards the end. One morning I could not be stirred. The collapse was now wholesale.
Panic measures ensued.
To cut a long story short when, after many months I had come round from deep unconsciousness and was whole again the cover-up began. Records were buried for fear of being sued and red faces could be seen all round.
I did not want to sue, I wanted to talk, to understand why? To know how I could help myself.
In the end I was told to pop pills and that was that. No other advice was proffered: dietary, psychological or physical. And then, five years later I started to feel ill again and went to see the doctor I was told in a most casual manner that there was nothing else they could do. It was as if T3 therapy had never existed. If it hadn’t been for a friend informing me of the fact, I’d be six foot under by now!
Sadly, mine is not an isolated case. It is happening almost on a daily basis in GP surgeries up and down the country.
When I asked a specialist why this is the case, he informed me that no one has actually has run proper tests as no one has the money to do so.
T3 treatment takes time to manifest in the patient, but the trials have not been given enough time. Time is money, alas. And yet, even more money is having to be spent on these patients whose situation is, in some cases, critical. How management can think we save money by spending more of it is beyond me.
Furthermore, Thyroid symptoms can be complex and need to be observed and paid attention to, rather than just relying on blood tests.
T4, in order to work, needs to be converted into the active hormone T3 – but if you have the faulty gene DIO 2 then that spells trouble for the conversion. It is a common problem.
‘In an experiment last year at Rush University Medical Center in Chicago, mice engineered to have DIO 2 developed many of the problems that affect humans — staying quiet and lacking motivation. They also had low thyroid levels. When they were given T3, their behaviour and thyroid levels returned to normal.’ Came a report in the Daily Mail last week
But, here’s the rub: three years ago, after the enormous shock of the price rise – the NHS has always been made to pay over the odds for its drugs (although T3 is a hormone). It is a pharmaceutical free-for-all.
Instead, I found an outlet in Thailand which was able to supply me with Thyroid S at a reasonable price: I had discussed beforehand this on an online forum run by the excellent Thyroid UK website. I tried it and it worked.
This week I ordered a new supply. I had been paying only £50.00 for a year’s supply. Then came the blow: my pharmacist emailed me back promptly: surprise, surprise – the cost has shot up: it is now £120.00 for the same: and it’s rising . More than this he informed me that the manufacturer has cut production – this is what had led directly to the price rise. Then, to add insult to injury, he is banned from sending it to me: and I am banned from receiving it. Yes folks, I am now a potential criminal for wanting to stay alive.
The hedge fund managers are now running the show and there’s great profit to be made. We’ve seen it recently in other cases and now, we patients are to be seen as both collateral, cash cows and crooks.
I now run the risk of being criminalized if I receive and take my T3 and the only option I have left is to leave the country. Sounds drastic but believe me the psychology of being a criminal when you already have severe thyroid disease is a recipe for breakdown.
So, it’s off to foreign shores, well France actually, where the overall standard of health care is a lot higher than our own.
If I’m still alive in six months I’ll write and tell you how the doctors are recommending copious amounts of red wine to help the transition from T4 to T3 – serious!