My crazy overactive thyroid, mark 3

(Actually, it’s now a tedious underactive thyroid)

So now we’ve got four months down the line, the fun and joy continues with medication for my overactive thyroid now making it underactive. The situation goes like this: a) Get blood tests once a month b) wait for the endocrinologist to see the blood tests c) wait for the endocrinologist to write to the GP and d) get a change in medication. There are a few pitfalls to this system and they are as follows: a) the blood tests go to the clinic and are unavailable to the GP and to me b) the endocrinologist can take up to two weeks to see them and respond c) the GP can forget to respond at all and d) the patient continues to experience unpleasant symptoms because they are on the wrong medication now.

At 40mg of carbimazole, my thyroid levels went to within the normal range, at 30mg, the thyoid became underactive and at 15mg I have gained well over seven pounds, am cold all the time, am down and tearful and, worst of all, am so tired that I can barely function. It’s difficult to drive from child to child as a home tutor because I want to pull over and nap in the afternoon. I have done so just for five minutes on occasion.

The NHS response times are so slow that I have now reduced my own medication to 5mg a day on the grounds that I feel like crap. I will inform the clinic of this on Monday. If I can get through. Unlikely.

I think I say this every time I blog about health, but the system really is broken. I understand why and I’m not complaining or offering any solutions, but it’s really unsustainable. If I don’t get a suitable and timely response to the next blood test (Thursday – and I know the numbers will be very low) I will go private again. This is so unfair on people who can’t afford to go private, but I guess at least it frees up the NHS a bit more. The private system can’t cope with the influx, however. Their waiting times are also getting too long. What are we all going to do?

I had a test for Graves disease in the middle of December and am still waiting for the result. Is Covid affecting the labs as well? It’s all so miserable! Sometimes in these blogs I offer advice to fellow sufferers of hyperthyroidism/hypothyroidism and everything in between. I am sad to say that I have nothing of much interest. However, I am still adamant that the wealth of nutribollocks and self-help crap that can be found on the web is of no use whatsoever, but I understand why people fall for it all in a world of inadequate healthcare, long delays, poor communication and uncertainty.

Some recommend intermittent fasting, others say Paleo fixes autoimmunity and still others say to cut out all ‘processed food’, or go raw vegan, or ‘eat clean’ or give up gluten, dairy and sugar. Who are the people doing IF, Paleo or cutting out half the food on the planet? I don’t think I know any, although I know people who do the 5-2. It doesn’t seem very sustainable somehow. Intermittent fasting for life? Can’t imagine anything worse.

I’ve got a funny suspicion that autoimmunity is caused and exacerbated by stress. When I get a feeling in my head of being time-starved, overtaxed, anxious and obsessive, there’s a physical tension that accompanies that. It makes my shoulders tight, my jaw clenched and my forehead furrowed. I can’t imagine what it’s doing to my insides, but I know that high cortisol levels are really baaaaaaaaaad for us. I wonder if there were systemic measures in place to reduce stress, whether we would all magically become less plagued by weird and worrying diseases.

A four day week for all might help. Cycling in towns only so that we have to get fresh air and can avoid stupid gnarly traffic. Compulsory phone curfews so that we have to talk to each other. Maybe a community centre within walking distance of every home, with big comfy chairs, huge colourful fruit bowls, good coffee and board games. Sparkly pavements. Table tennis everywhere and public pianos. A better minimum wage and more effective public services.

Or getting together at a neighbour’s house to make crafts for the Jubilee, which is what I’m doing tomorrow. And walking, somewhere beautiful. Deep breathing, warm baths and favourite music. Smelly candles. A banning of winter. Booking a massage. Being kind. Pushing back the world of busyness and creating a home haven. Watching comedy. Right – that’s my Sunday sorted.

The Great Unvaccinated

The next great scapegoat

I am vaccinated and boosted before anybody starts yelling at me. I believe in it. Saying this as a prequel summons up the zeitgeist on social media whereby the unvaccinated are the latest recipients of national shaming, summed up by Sajid Javid who blamed this tenth of the population for the impending onslaught of the NHS. Reminding the nation that people awaiting surgery will be unable to access a hospital bed because the unvaccinated are ‘littering’ the beds was a masterstroke of governmental scapegoating, because it works. I felt momentary fury at the apparent selfishness that Javid portrayed in that statement. Thinking of my elderly parents and friends with life-threatening conditions prompted the righteous rage that they want.

As I write, I hear the news in the background of bottles of wine, parties, Downing Street hypocrisy and a silenced Prime Minister who has lost all credibility within his own party now after losing it with everybody else years ago. This government cannot be taken seriously any more. Bojo can’t face the nation and be met with anything other than derision. His disrespect towards the NHS staff was evident in his smirking, unmasked face at a hospital visit last month and his own amoral lawlessness beggars belief. This government have got it wrong again and again. Yes, the vaccine was well managed but was also hugely necessary because of previous ignorance and indifference as Boris missed vital meetings, told everybody to carry on regardless, kept the borders open for months, ignored calls to lock down earlier and stopped mask requirements way too soon.

As Omicron makes its way through the nation, and once again we live with the horrible reality that seriously ill people will have less access to hospital care, the easiest thing in the world is to point the finger at the unvaccinated. After all, 90% of us have had the jabs, felt the righteous satisfaction of doing the correct thing and being responsible citizens. It is the easiest thing in the world to follow the flow and do as we are told. To me, it is the obvious thing to do. I trust the vast majority of the scientists and I don’t know enough about the medical research process to invest my time and attention into the small percentage of naysayers that talk of gene alteration and lack of animal testing or whatever their argument might be. However, people do have the right to choose what they wish to put into their own body.

I can all too easily imagine a country where people are forced or coerced into medical decisions without their consent and that isn’t a place that I would want to be a part of. As for whether the unvaccinated should be ‘littering’ hospital beds, is this the way we talk about our fellow humans? The NHS was set up to provide medical care for all those who need it. Are we going to stop performing heart surgery on smokers, stop providing hospice care for alcoholics with liver disease, refuse to treat injuries in marathon runners or let speeding drivers die where they lie on the road?

We are all angry, anxious and stressed as the news headlines scream at us with unnecessarily emotive language: violent verbs like ‘ravaging’ and ‘raging’ and adjectives that include ‘terrifying’ and ‘alarming’. This isn’t helpful at all. We could actually be presented with factual information but sadly that doesn’t sell. Our fear makes editors rich as they feed us these headlines and we blindly swallow them, making ourselves unwell with the weight of the words. I prefer facts, choices, logic and reason and the news just makes me angry. In the context of these headlines, it is understandable that we want to rage at the unvaccinated and blame them.

I know a few people who haven’t been vaccinated and here’s their reason. Fear. Fear hits us all in different ways with different outcomes. My fear is assuaged by taking the jab. A mum of a boy I teach feels safer to remain unvaccinated because she believes that it will cause a blood clot. I could argue with her until I’m blue in the face but it wouldn’t change the fear that she experiences. She would rather have Covid than have a jab, and she doesn’t believe that it would make her ill enough to go to hospital. It probably wouldn’t. It is her body, her choice. This applies to all of us.

And before we listen to another blaming speech from the government, or another shame-inducing rant about the unvaccinated, let’s just remember that what they are doing is deflecting from their own embarrassing inconsistencies, selfishness and failure. If we want to be angry at anyone, which isn’t especially helpful in any case, let’s be directing it at the correct source, and put an actual adult in charge of this chaos.

Was my sports watch worth it?

My overall experience of owning a sports watch

First it was a Galaxy smart watch, followed by another, fancier one, then a Garmin Venu, which was, as watches go, brilliant. I had a sports watch for around five years altogether. I was a runner with two marathons under my belt who still did plenty of events, trained long and often, and liked the stats. I used the Garmin to check my mile on mile pace, heart rate, elevation and mileage. It linked automatically to Strava where I enjoyed looking at other people’s routes and activities as well as sharing mine. My Garmin Venu showed me a gradual increase in heart rate that culminated in a diagnosis of overactive thyroid, which took me to the GP early and caught the condition early. It had a really cool screen and was comfortable to wear. These are the pros.

The cons are more complex and individual. When I started wearing sports watches it was harmless and helpful. By 2020 my Garmin Venu was a noose tightening around my thoughts as my 38 year long eating disorder took ownership of it and became obsessed with the numbers. As Covid numbers rose and I watched it all unfolding around me, I felt strangely detached. I surprised myself by not being swallowed up by anxiety like others around me. I ran a lot.

The Summer before, I had started using an app called Cronometer to track my iron intake. I had been to give blood and told I was borderline on the iron front therefore not eligible after at least fifteen years of giving blood regularly. Menopausal women need more iron, apparently, and I wasn’t about to start eating red meat, so I started to log my nutrition more precisely. I easily fixed the iron and started giving blood again. But by that time I was calorie counting again and losing weight after not engaging in dieting behaviours for several years.

Where does the Garmin Venu come into this? I realised that for every run, walk, workout or movement of any type, it counts your calories and gives you a daily total. This, for a person who is becoming rapidly obsessed with weight loss and calorie tracking, is a menace. In my previously disordered times I had reams of notebooks lying in kitchen drawers full of numbers, scribbles and food lists. The Venu made the eating disorder streamlined, slick and almost sane. In other words, it enabled it and enabled my denial.

There is research being carried out, currently, as to whether there is a correlation between fitness watches and eating disorders, with inconclusive evidence. This post is just my experience. The Venu did not cause an eating disorder. I had a chronic one already that was lying dormant and the Venu exacerbated it. I would have had an ED regardless of the watch. Cronometer was another enabler. The trigger was Covid anxiety. I realise now that the detached feeling I had was because the lifelong safety behaviour of food and body control was kicking in, like an anaesthetic, and it felt as familiar as childhood.

My watch is now gone, to somebody who is not eating disordered, and I feel good about that. I have deleted Cronometer and Garmin and don’t have the option of running at the moment as I have completely knackered my sacroiliac joint by digging. I don’t know what my running will look like when I start again, but I will figure it out as I go along. In the meantime, here are my thoughts about whether a smart watch is a help or a hindrance.

IT’S A HELP IF:

  • You love the stats relating to your sports performance
  • You like to train within certain heart rate zones and are a fitness nerd
  • You’re keen to develop and maintain good sleep hygiene
  • You follow training plans
  • You want to create routes on it and follow them

IT’S A HINDRANCE IF:

  • You use the calories to inform your food choices for the day
  • You go for a walk or a run, even when exhausted, to burn calories
  • You walk or jog on the spot to get your step count to a target
  • The watch dictates your daily activities and not the other way around
  • You can’t go out wearing a normal, time-telling watch because you can’t imagine life without the watch recording everything

It’s worth noting that disordered people will deny, even to themselves, that the second list is happening. We tell ourselves that it’s OK really and one day we will get control of it. But here’s the thing. If we feel shame about our addiction to the numbers, control and obsession, then it’s a problem, because we know that our behaviour isn’t normal or balanced.

And finally, feeling shame about having disordered eating or exercise behaviours is really, really sad. As if it’s our fault! We are taught from a young age that our bodies are of immense importance, and that a certain appearance is more valued and makes us more acceptable. When everything around us is as crazy as it is right now, with ominous words and talk of lockdowns, a palpable sense of fear and a world that feels unsafe on every side, it’s no wonder that we shrink ourselves and hide behind a blockade of addiction and obsession. We are struggling as a nation. Some drink too much, some binge eat junk food, some spend too much, some rebel and break all the rules, some become too anxious to get out of bed, some lose all hope, some get angry at other drivers and explode into tears of helpless rage and some, like us, get into food and body control as a way of avoiding all this crap. But one thing is for sure – none of us are OK. So please – ditch the shame, never give up and always keep reaching out for help.

Journey of an overactive thyroid

Plus the sad state of the NHS

Photo by Karolina Grabowska on Pexels.com

I wrote a few weeks ago about my crazy overactive thyroid, which is now within range. What this means is that the 40mg of carbimazole that I’ve taken daily for the past four weeks has drastically destroyed some of my thyroid tissue thus rendering it incapable of excess T3 and T4 production. The TSH hormones that drive production of the T3 and T4 that circulate around in my blood are still ‘switched off’ but other than that I am ‘normal’. I feel fine, although a little tired. I have gained back the few pounds that I dropped, and it will be difficult to stop eating so much, as I got used to whole days of grazing, non-stop, on carbohydrates, just to hang onto the weight I was at. The downside as that I’ll need to be ‘titrated’ now which means staying on exactly the right dose of carbimazole to maintain the correct range. I think it can be tricky and can go under, in which case I’ll need thyroxine, and my private endocrinologist has still got me on 30g of carbimazole for another four weeks, although by that time I’ll have seen an NHS endocrinologist who might say something else entirely.

The other downside is that my liver function is now borderline. It was borderline at diagnosis, which was due to the toxicity of all that excess thyroid hormone floating about in my bloodstream, causing the liver to work harder. Either that or it was the borderline wine addiction but to be honest I don’t think so. It’s only ever been 2 or 3 glasses at a time and often none at all for weeks at a time, so probably not that. I’m now off alcohol completely and will be until I’m off carbimazole, because the liver function has worsened and is now causing my skin to break out and probably some of this fatigue. I don’t know whether the NHS endocrinologist will try a different medicine but I’ll ask at the appointment. I also still don’t know what the cause is, because the test for Graves disease that the private endocrinologist asked for was messed up by the lab, and my GP cannot request the test as it needs to come from a specialist.

This whole business of going private is sad. Not for me. It cost £200 and it was money well spent. But the fact that so many are having to wait five months to get seen. If I hadn’t have gone private, my condition would’ve worsened and the symptoms would’ve been really unbearable. I’d have had to give up work and be signed off sick, and had no income because I am classed as self-employed and don’t get sick pay. If I hadn’t have had the wherewithal to research my condition and realise what I needed, and discovered that GPs are not experts in endocrinology, and would be unable or unwilling to prescribe carbimazole in the doses that I needed, I would have suffered so much more than I did, and for longer. If I wasn’t the kind of person who makes a decision to get things sorted, and then acts like a bull in a china shop until they are sorted, nobody else would have conducted that fight for me.

I’m an intelligent woman with a will of iron and, although I’m genuinely kind and caring, I’m not gentle when it comes to getting what I need or getting what my family needs. In the past I advocated for my daughter by regularly bombarding the CAMHS unit and reminding them of the NICE guidelines. I contacted my local MP who also advocated for her. I got her treatment earlier because I kept on. My letters were well-informed, articulate and medically accurate. But how unfair is this? I’ve realised more than ever before in my new job how much the system is screwing over the most vulnerable members of our society.

How are these people supposed to get help? There are those around us in situations which are festering, problematic and downright unsafe. A single parent with severe mental health difficulties who cannot see a psychiatrist for months or even obtain the medication that would help them to find some space and calm. A child who can’t sleep because their routine has become completely upside down, who has missed so much school that they can’t tell the time, a child who is out all night and in all day, whose parent has learning difficulties and doesn’t really know how to parent, despite all the love in the world. A clinic where nobody answers the phone. Informative leaflets emailed out to people who don’t have the capacity to understand them and nobody to advocate for them. Local councils with social workers so snowed under with enormous caseloads who, through no fault of their own, are unable to support these families. GP surgeries with locked doors and phone queues over an hour long. Single mums haven’t got the time to wait over an hour. The baby’s crying, the washing needs doing, the cat needs feeding, the kids have to be fetched from school. They’ve got jobs that they need to pay the bills. They can’t get any help from anyone.

It’s a horrible speculation but is the NHS deliberately being run into the ground so that we can all go the American way and buy into lucrative personal health insurance schemes where the rich get richer and the poor just suffer? Where poor people with diabetes can’t get insulin because it’s not covered on their insurance? Where self-employed folks have no incentive to carry on and they have to go back into the corporate world? Or are we already there? I know that the families I work with are suffering because the NHS is no longer fit for purpose – which was to provide healthcare to every single person in a timely manner regardless of socio-economic status. If we are going the American way can we just get on with it then? Because what we’ve got now is neither here nor there. It’s a half-way house where people like me can badger, bombard and be heard, or pay the odd £200 for some timely treatment, and other people can just fall through the cracks in a ‘survival of the fittest, every man for himself’ kind of Trump-esque dystopia.

My thyroid condition will probably be well-managed and I’ll cobble together a path through it in a combination of self-management, education and professional input. But I’m sad for the NHS and all the amazing people who work in it. I hope against hope that this government really does put in some considerable funding and keep it going. I’ll never give up hoping that they really mean it and something will change. I don’t want to become the next state of America, driven entirely by consumerism, corporations, power and heirarchy. I want to live somewhere where every body is seen, valued and cared for with the same ferocious drive to thrive that most of us extend to ourselves and our own.

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