Finding out why

Since my last blog, I had done enough thinking and researching to have a hypothesis as to why I was becoming increasingly hypothyroid in spite of thyroxine replacement medication. I am a thinker and a researcher. I cope by gathering information and ensuring I fully understand what I’m facing. I need knowledge. I wasn’t getting that through the current primary care provision.

Blood results and prescriptions aren’t enough. I need to know WHY things are happening. I was once that infuriating child who incessantly asked ‘why?’ until a frazzled adult resorted to ‘because I said so’. This inevitably resulted in ‘yes, but WHY?!?’.

It seemed I had to pay for my answers, as the NHS doesn’t have time to tell me why. So yesterday I went back to the endocrinologist. My Hashimoto’s is a rapidly acting beast. Many people become hypothyroid so gradually that it gets missed for a long time. My 8 years of borderline readings suggest my immune system had killed a few thyroid cells some time ago, but not enough to persuade a GP to do an antibody test or treat me.

For whatever reason, my immune system went on the rampage some time around the New Year. My entire thyroid gland was bombarded with antibodies and became inflamed. Within weeks I was feeling very poorly, and this process is continuing. Most of this I already knew, but not that it is still progressing.

More and more of my thyroid cells are being destroyed at a rapid rate. This means I am producing less and less thyroxine. My need for replacement hormones is increasing faster than the medication is being increased. This is why I am more hypothyroid than before I started medication. Without the meds, I would be worse. It is roughly what I had guessed was happening.

At some point soon, my immune system will have succeeded in completely destroying my thyroid to the point that it can’t produce any hormones at all. The endocrinologist sees this as inevitable given the trajectory I’m on. At that point, I won’t get any worse and treatment will then be the same as it would be for someone who has had their thyroid surgically removed. On that basis, it’s possible to estimate my likely medication needs based on my weight. It’s not an exact science, but it’s easier to estimate than it would be for someone who is slightly hypothyroid but still able to produce some hormones.

The endocrinologist estimates I will eventually need 100-125mgs of levothyroxine. My dose was increased to 75mgs 1.5 weeks ago. I need to wait 6 weeks from when that dose started before I have another blood test. Based on the course of my illness and the level of my symptoms, the endocrinologist has given me the go-ahead to increase to 100mgs mid-way through this period (in another 1.5 weeks) and three weeks before the next blood test.

I am able to do this because I had already decided that I will pay to see the endocrinologist until I am stable. The power of just seeing someone face to face and being able to ask questions is worth it for me, even if this should be manageable on the NHS. Given that he will be able to check for signs that I am taking too much medication, it is safer for me to increase the dose a bit more quickly than if I was under my GP.

This still isn’t a quick fix. I know that not everyone who is supposedly taking enough thyroxine actually feels better. Too many people are dismissed by their GP because their blood results are now ‘normal’. However, what the lab defines as normal is the subject of much debate in the medical literature. Thankfully, my endocrinologist is willing to increase someone’s dose a bit further if they are not feeling better, as long as blood results don’t go outside of the normal range.

Here comes the science bit (sorry!): My research suggests that most people who have normal thyroid function and never go on to develop a thyroid disorder have a thyroid stimulating hormone (TSH) level below 1.5. Similarly, the evidence suggests people with Hashimoto’s need to get their TSH below 1.5 before they will feel better. Yet the lab ranges are typically 0.4-4.0, and NHS treatment not considered until someone is well outside of that range.

My TSH was between 4 and 5 for years, which I now know meant it was highly likely that I already had thyroid antibodies. I’m currently at 16, so getting back to 4 would be a huge improvement. But I know not to be fobbed off until it’s less than 2, if not less than 1.5. And if I need more medication to feel better, it’s fine as long as I don’t go lower than 0.4. What is more worrying is that the endocrinologist warned me that he cannot guarantee my symptoms will completely remit even with optimum blood results. There’s every chance they will, but some people remain symptomatic and we don’t really know why.

I’m trying not to think that far ahead just now. I’ve already come across people who haven’t got better, so I appreciate the honesty I was given yesterday – many are told that their blood results are normal so they can’t still have symptoms. That must be so incredibly soul-destroying when you feel like shit.

It has crossed my mind that all those years of a TSH level that was slightly higher than the lab range but significantly higher than optimum might have been a problem I didn’t realise I had. Was I always tired because I was doing a doctorate and then a very demanding job or because my thyroid was struggling? Was an episode of depression a few years ago so difficult to treat because my thyroid was underactive? I’m not suggesting that was the only reason – I’ve made sense of my depression in other ways. But the one thing we never tried was a low dose of levothyroxine.

The reason I knew my thyroid was borderline was because, despite rarely being ill, any time I did get an infection of any kind, I was completely knocked off my feet and took a long time to recover, often having blood tests along the way. This was possibly a sign my immune system was already working hard at attacking thyroid cells.

I’ll probably never know if my thyroid had a role in any of this, but I wish I’d done the research back then rather than taking the GP’s word that the numbers were probably just normal for me. I still don’t understand why we don’t test people with borderline thyroid readings for thyroid antibodies. Then we’d know if the numbers were ‘normal’ or the start of an autoimmune disease. Perhaps it’s because we haven’t developed ways of preventing or reversing autoimmunity.

When the immune system attacks an endocrine gland (e.g. Hashimoto’s Disease, Type I Diabetes, Addison’s Disease), we wait until the gland struggles to produce hormones and then prescribe synthetic ones. When it attacks other areas of the body (e.g. Lupus, Multiple Sclerosis), we treat the symptoms. We don’t fully understand why the immune system gets confused in this way. We certainly don’t know how to prevent it or stop it once it starts. I wonder if this is behind the ‘unexplained’ fatigue that many with ‘treated’ autoimmune diseases continue to experience?

Replacing hormones won’t stop my body from attacking the thyroid tissue. I assume that that immune response in itself must take up energy and have an impact. I feel like I need a medical degree just to understand my thyroid, and autoimmunity is a much bigger minefield. When healthcare funding allows us to look beyond treating established illness, then maybe there will be more scope to understand and prevent or cure autoimmunity.

For now, I have an idea of what I’m dealing with. I never expected an easy ride, but even I wasn’t fully prepared for how tough this would be. Exhausted is now my normal. If I sleep for 12 hours and get an afternoon nap then I can just about function but feel very tired. If I can’t do that or I have a long drive or something especially tiring then I struggle to process information and take forever to do normal tasks. I pretty much drag myself through. Sometimes I have days like that for no apparent reason. Other days seem to go a bit better for no obvious reason.

I have become used to it to an extent. It’s only when I need to change my current routine that I realise how dysfunctional it is. I had a viewing on my house at 10am on Saturday. That required me to be up at a certain time. It was ridiculously hard for a time that really isn’t early. I went back to bed afterwards but still felt awful for the rest of the day. This isn’t sustainable. I am currently most alert in the late evenings and cannot do mornings at all. I used to be a morning person. I now work in the evenings as best I can.

My heart goes out to anyone battling this illness who has a job with fixed hours and/or young children. My dog keeps me in a bit of a routine, but he’s adapted well. As long as I get up to feed him, he’s happy to go back to sleep and have a lazy morning. He gets me out twice a day. The runstreak also helps. It may be a snail’s pace, but that bit of an endorphin hit and fresh air lifts my mood. Much more so with the recent sunny weather – my low baseline body temperature currently makes me a weather-wimp. I crave that feeling of effortless running and wanting to go on forever. I need to believe it will come back.

I am still holding out hope that things will begin to improve soon. I am learning a lot about what is important to me, what I’m grateful for and what I’ve been guilty of taking for granted. I have plenty of moments when my toys get thrown out of the pram. I am immensely grateful for the people who allow me to throw them and then help me gather them back up again. I have my fingers crossed that my next blog will be one of progress.

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