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.

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.

My crazy overactive thyroid

My first seven weeks with an overactive thyroid.

Hyperthyroidism and me

When did it start?

I was out on a run on the 4th August, my last run before the Belper Rover, an 18 miles trail run that I’d had planned for a while. This was my last long run and I’d planned a 15 mile route around the beautiful Stapleford area of Nottinghamshire. From the very get go I felt horrible: hot, out of breath and heavy. It was a muggy, warm day and I put it down to the heat, sipping at the water from my carry pack and persevering doggedly through country lanes and footpaths until, on mile 7, I realised that it was not going to get any better. Deciding to significantly slow my pace, I shuffled along for another few miles and realised that my heart rate was up to 200, which panicked me. At 50 that’s way over my maximum heart rate and I stopped to walk. The last 5 miles were a nightmare of heat, exhaustion and confusion as I wondered what the hell was wrong. Arriving home, I put it down to a virus as my stomach was churned up and painful. I rested for the remainder of the day and went to bed.

The next day my resting heart rate was ten beats a minute higher than usual at 65 and once again I thought that this confirmed a virus. The next evening I had a 7 miles race booked in the Peak District with my stepdaughter Jess. It would be hilly and hot and I knew I shouldn’t do it. But I messaged Jess and told them I’d be there but may have to stop and walk if I felt unwell. Next night I started the Saltcellar race and made it three miles before feeling sick, exhausted and anxious. I was already running at the back and I stopped to let the two women behind me past and then told the next marshall I was heading back. He kindly accompanied me back and I decided not to run again until I felt much better.

Diagnosis

Through the month of August I did no running but lots of walking. After a holiday in Whitby where I ate all the chips, chocolate and cakes physically possible to get in my belly, I got home and found I’d lost weight. The heart rate was still ten beats a minute higher than usual and I was going to the loo a lot more (putting it politely). Googling my symptoms led to my suspicion that my thyroid had gone overactive and finally, beginning of September, I had a blood test which revealed this to be true.

What it’s like

Having this condition for me has been manic. Up until yesterday, when I started betablockers, I was hyper all the time. I would try to go to sleep but my heart would be banging in my chest so loudly that I could actually hear the swooshing sound of the blood. Needless to say, this is not the most relaxing feeling I’ve ever had. My husband even said he could hear my heart one night, which made me feel even worse. The hunger for carbs was overwhelming until I started on carbimazole, which dulled the appetite. I couldn’t even get all the food I wanted, because I’d get full and then be hungry an hour later. Nothing was able to keep me energised and I was bored of eating the same things but trying to avoid filling up on sugary foods (which I did occasionally do). My anxiety was the worst thing. I’d be going about my daily life and then, apropos of nothing, get a feeling that I was about to die. My stomach would churn, I’d get sweaty, and feel complete panic, with nothing triggering it and no way of knowing when it was going to happen. I also couldn’t stop my mind from racing and worrying, in a pointlessly circular track that said, ‘I can’t teach, I can’t teach, I can’t teach’, or ‘I can’t plan, I can’t plan, I can’t plan’, and, occasionally, for a little respite from the shit talk about work, ‘I might die of cancer’. It was a laugh a minute in my head. Thank goodness that the betablockers have stopped most of this incessant self-imposed verbal abuse.

What to do

GP will refer to an endocrinologist for further testing. Ask for an antibody test to see if it’s Graves disease. This is the most common cause and is an autoimmune condition. It can lead to eye disease and needs to be managed. If, as in my case, the antibody test comes back negative, it’ll need further testing. It could still be Graves as some people don’t show antibodies even though they have it. You need an ultrasound or a thyroid uptake test to see if it’s nodules, most of which are benign. The treatment is similar in any case. It might be an anti-thyroid drug like carbimazole, which makes you knackered for a bit but eventually works. After a while you might be offered radioactive iodine, which kills the thyroid and then you have to take thyroxine for the rest of your life. This is called ‘block and replace’. Whatever the treatment, you need regular blood tests for ever after to make sure the thyroid levels are right.

Some GPs are crap and some are great. I had a crap one first and then asked for another one because the crap one said he couldn’t prescribe anything and I’d have to wait for the endocrinologist. This was a lie and downright dangerous as my free T4 was rising rapidly and had doubled in two weeks. A GP can prescribe carbimazole and also betablockers for the palpitations and high heart rate. The worst symptom for me was anxiety and I’m so happy to be able to say that in the past tense as just one day on betablockers has knocked it out. So far my 10mg a day of carbimazole is doing nothing so that’s under review at the next blood test.

Our poor NHS is gasping for air and a hair’s breadth away from irretrievable decline. I was told 18 weeks for an endocrinologist and, in the event, it was 12. With the small possibility that it might be something malignant I have decided to see a private endocrinologist for £200 a pop plus the cost of any tests. I realise that I’m privileged to have some savings and not everybody does. But if you do, or if you can shove £2000 on a credit card and pay it back over a few months, I’d recommend getting it sorted asap.

Recommendations for living with an overactive thyroid

  1. Go to bed early and nap during the day even if you only have time for 10 mins.
  2. Get on a beta blocker
  3. Eat as many carbs as you can fit in your belly
  4. Do some yoga (I can’t be bothered but I know I should)
  5. Walk every day and get some fresh air. Don’t try and run unless you’re a nutter like me
  6. Lift some weights as this disease wastes your muscles and can cause osteoporisis
  7. Eat a ton of calcium foods. For me it’s enriched plant milks. Bones will need it.
  8. Get a journal and write down all the worries. There will be loads. Writing them helps.
  9. Talk to anybody who will listen. This is a time when friends are needed.
  10. Use a meditation app every day to get some calm
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