A rant

This will be a bit of a rant because the update is small, but my frustration is great. I won’t be offended if you leave this page now, but I need to vent even if it is to no one.

I have waited out the time until I could have another blood test and potentially a medication increase as well as I can. Due to my thyroid, I haven’t felt able to live my life properly since February. Many have it far worse, but when you drag yourself through each day, this is quite a long time.

There have been a few better days, but mostly false dawns. Every time I have thought the medication is beginning to kick in, the fatigue comes back to bite me. I don’t think I’ve been silly on those good days. I haven’t tried to run a marathon or take on a load of new work or clear out the garage. I’ve tried to live a little.

I think we miss this when advising people with physical health problems or those recovering from illness. ‘Don’t overdo it’, ‘be kind to yourself’ – there’s an assumption that the biggest risk to recovery is people trying to work too hard or fit too much in. It’s a side-effect of our busy culture. No one is supposed to be full of energy, on top of their workload or able to take time to stop and think.

The advice to ‘look after yourself’ generally assumes we need to rest. Sometimes looking after yourself means doing more and not less. On the good days I have tried to do more of the stuff that makes me happy because otherwise hypothyroidism will beat me. I haven’t upped my mileage, but I’ve tried to run in places that feed my soul. If that means hills and more fatigue, so be it. I have tried to take the opportunities to have a nice day out – on Bank Holiday Monday I took my dog for a long walk and play with his canine family. It was a 2.5 hour round-trip that was worth every minute.

I need days like that to stay sane. I paid for it by feeling shit for the rest of the week, but I don’t regret it. I can’t do it on bad days, and it’s not worth expending that much energy on anything that isn’t important, but if I avoid everything that makes me feel tired, then I lose my life. I don’t think I fully understood this before. In my previous career as a therapist, I have worked with people with chronic fatigue. We try to manage activity levels in order to manage fatigue. I think we sometimes forget that a life entirely focused on not using up too much energy is no life. That’s not to say that I (and others) shouldn’t be sensible, but sometimes we need to get the balance completely wrong so we don’t lose who we are.

I had anticipated a long journey to full health. However, I had assumed there would be incremental gains along the way. So far, that hasn’t seemed to be the case. No one ever told me it would be, but I assumed some medication would be better than none. As it turns out, the words of the endocrinologist are disappointingly true – ‘you won’t feel better until your TSH level is below two’. That’s my Thyroid Stimulating Hormone. We started at 13.9, so 2 is somewhere in the distance.

After waiting nearly 6 weeks on my current dose of medication, I had my latest blood tests on Friday. I also had other blood tests to check my calcium level and screen for Addison’s Disease and Coeliac’s Disease. None of those results are back yet, but the thyroid function test is. Well, more accurately, it is on the computer system. According to the GP surgery receptionist, computer says ‘patient may benefit from increased dose of levothyroxine’. The receptionist can’t give me the numbers, but that statement in itself was a relief – if the test had come back normal I would have felt at a loss to explain why I don’t feel better.

The relief was short-lived. No doctor has yet seen my results. I was offered a telephone slot a week on Wednesday. I clearly sounded off-kilter, as the receptionist then checked telephone slots for the other surgeries linked to the practice I’m registered with. I can speak to a doctor at an indeterminate time on Thursday. That’s only three days, but when you’ve been offered a potential solution to feeling like crap, that seems a long time to wait. If I actually wanted to see a doctor it would be 3-4 weeks.

This isn’t the fault of the doctors or the receptionists. The local primary care system is failing. Experience suggests the doctor I speak to will merely write a prescription. That is what I’m focused on, but they are treating my lab results and not treating me. I have had no discussion about my symptoms. No one has connected the dots of my medical history and seen that a person with a diagnosis of Recurrent Depressive Disorder now has a condition that can cause depression. No doctor has asked how I’m feeling or established what impact this is having.

Running is one way I have stayed well since my last experience of depression. I’m a running coach. Having no energy is having quite a big impact. If they had time to ask.

In essence, I am fine. I have enough personal and professional experience to have been on top of the potential impacts on my mood from day one. I have worked in the system so I know how to get help if I need it. I’m used to working with and, where needed, holding my ground against doctors. Many people can’t do this, particularly when unwell. This failure in primary care makes me more angry than my personal situation.

Working in mental health, I often saw people who had taken a long time to seek help from their GP. I saw plenty of people whose treatment was delayed by lack of knowledge from their GP or an inappropriate or delayed referral to the right service. I don’t recall seeing many people who wanted help but waited a month to get a GP appointment. Yes, if it’s urgent you can argue the case, but how many people will feel able to do that or categorise their issues as ‘urgent’?

GPs are not supposed to provide emergency care. They are supposed to relieve the pressure on emergency care services and provide a gateway to all other healthcare services. They are being prevented from doing this in some areas on the UK because there aren’t enough of them.

This will have long-term consequences. It always does. Further down the line, the personal, societal and financial costs of illness that wasn’t treated early will be felt. I don’t have the solution, but it isn’t this.

I will speak to a doctor on Thursday. I’ll get a prescription for a higher dose of levothyroxine and find out if my other blood tests are ok. Then I’ll start the process again and wait another 6 weeks for a repeat test and potentially another increase. I will survive, but it shouldn’t be this difficult.

As soon as I can find a buyer for my house in Bedford, I am off to the North Yorkshire coast. There’s an irony in the fact that I will finally have hills on my doorstep at a time when I can’t run up them. But there’s a rumour that you can get a doctor’s appointment on the same day at the local surgery. Hopefully that will get me up those hills sooner.

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