It’s not my job, but it is my job.
I feel that this week is a continuation of where I have been the last couple of weeks. This year has been tough. I felt that there was a significant physical decline and that this has been accompanied by a step down in my mental health as well. Last year, I felt like I was struggling. Struggle implies I was fighting back; this time, I felt like I had no fight left. I felt I had nothing to fight with, nothing to give and that accepting I had arrived at a “new normal” was the best thing to do.
To adjust to my new situation, I needed to lower my expectations; I had to adjust my goals and aspirations to fit my new, much lower capacities. Tired and beaten, hurting and fatigued, it was time to take stock and come up with a new plan. That is what I did. The first step was to make sure that my meds were in order; this is the job of pharmacists and doctors. Of course, this is not my job, but history has taught me that it is worth checking.
What I found in my check was that my thyroxine dose was less than half the minimum recommended for my body weight. You might guess what the result of that chronic under-dosing is, but in case you didn’t; chronic hypothyroid leads to increased pain, depression, and fatigue. In fact, all of the physical symptoms I associated with physical decline could be caused by a lack of thyroid hormone. What really struck me was that, checking the Doctor’s own reference, the BNF, I found that thyroxine is dosed by bodyweight and that mine wasn’t half of the recommended 1.5 times found in the BNF.
To dive a little deeper: in the NHS, low thyroid is diagnosed by measuring the level of Thyroid Stimulating Hormone, TSH. However, it is possible to have low circulating thyroid hormone — T4 with a normal TSH level. I am not going to detour into the issues of thresholds and bell curve distributions here; suffice to say, with hindsight, it was likely I was hypothyroid for a good while before my diagnosis back in 2017, while admitted for a stroke. I have been on T4 (thyroxine) treatment ever since. Not once has my T4 been dosed using the formula I found in the BNF.
I am not saying that my last nine years would have been completely different, but I have spent that time with hypothyroidism that could have been avoided. Part of me wants to kick myself because I have known for most of my life to check the work of health professionals myself through the experience of their, shall we say, errors and mispredictions rather a lot.
There have been numerous occasions when I haven’t had the “optimum” course of treatment. Be that a contraindicated procedure on my left knee in my early 20s or, most significantly, the absolute shit show saga following my stroke in 2017. It started with being discharged from the hospital in a wheelchair with full left side paralysis and unable to speak properly, and ended with the diagnosis of lacunar infarction being reversed on discharge. On the final occasion, I left the hospital via a Zimmer frame with limited speech, unable to write, and with significant obvious deficits. There was no follow-up because, on paper, nothing had happened.
I still don’t know why I thought my T4 dose would be right given my experience. I could put it down to the stroke, having researched what damage that type of stroke does, then it is entirely possible, if not likely, that this is the case. While resisting the temptation to kick myself for not checking the actual dosing sooner, I found some more pertinent information. My pain killers have a suppressive effect on the hypothalamus — pituitary axis that controls TSH, the receptors and the conversion of T4 into the active form T3. In other words, my thyroid function is driven lower via a threefold mechanism. No wonder I was feeling like I was dying. At this point, I started to wonder how close I was to actually being dead. I am reading words on a page, but I shared symptoms with Myxedema coma, which doesn’t need to be an actual coma (according to the medical literature). While I was also running a cardiac risk on a heart that has had two events, one on December 17 and one on April 18, from an improperly treated embolism.
I told you I had reason to check the homework of health professionals!
This has really dominated my thinking because today I am in the fourth week of addressing the thyroid issue. I have done it myself, using a calculator. I will bring it up with the doctor, but right now I don’t feel like fighting. I will likely start with a letter. The thing is, it shouldn’t be this way. This isn’t about underfunding, and I am not going to tear into the maligned health service. I have worked and met outstanding health professionals who really care and put their all into their job. Instead, I am concerned because I am blessed that I have the ability (still) to understand the literature, the resources to exert some independent control and address things myself. Back in 17, I had enough about me to look up and do the rehab without input. However, not getting the help I needed left massive holes in my recovery. I could address the physical issues, and I did. Would the physical recovery have been better with tools and professional input? You have got to hope it would. We can never know.
In terms of my mental and psychological health, being left out at sea definitely did lead to problems. Cognitively, I am not sure I am fully recovered; I still feel there are deficits, and my adhd addled memory is definitely worse than it ever was. I am much better than I was post-stroke, but am I back to who I was before? Definitely not, which is frustrating and when I think about it for too long, upsetting. I lost who I was and was left to rot by the service that was supposed to help me.
I was lucky to have the physical and mental resources I had that got me through. Just like today, I am blessed to have the capacity and confidence to see what is wrong and correct it. What worries and scares me is what happens to those who are not like me, or what happens to me if I lose those capacities. Statistically, the answer is, we die.
Dead, we are not a drain on health resources, and we aren’t living the life of luxury at the taxpayers’ expense (that apparently disabled people are), so maybe that is the outcome the “system” actually wants. It certainly feels that way when you see the rhetoric in the media. I don’t want to end on a negative note. The experience is not a positive one; as the saying goes, you either win or learn; this has been a learning experience.
Even more than ever, it is important to maybe not take control but definitely be informed about the things that affect us and check the homework of experts wherever we can. Just like reading the small print has become a necessity where the smaller the print, the more important it is that you read it, our health and the choices of others that affect our lives are ones that now need to be scrutinised more than ever.
However, checking the work of those whose decisions affect our lives does not mean asking chat-gpt, an AI or an AI summary. Sure, these can be launching points for research, the more we learn about LLM’s, the more apparent it should be that a sycophantic billionaire funded chatbot is not our friend. In my story, you notice I used the BNF, which is the publication found on doctors’ desks; it is their go-to reference. In the UK, I look at SIGN and NICE guidelines and use PubMed to find the actual literature or proper summary reviews of it. Even then, I take it all with a pinch of salt because none of them is infallible. We can’t know everything, but we have to choose our aggregating sources with care.
Everything happens for a reason; sometimes the reason is that someone made a bad decision. Until next week.
