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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