Update: a diagnosis

Yesterday, my blood results confirmed a diagnosis of Hashimoto’s Disease. In a nutshell, my immune system has mistaken my thyroid for something nasty and produced antibodies to kill it. I will need to take medication for the rest of my life – a synthetic substitute for the thyroid hormone that I’m not able to make.

In theory, once I am taking enough medication, I should be fine. However, I haven’t yet spoken to anyone with this condition who has had such a simple ride. Too much thyroxine is dangerous, and medication has to be increased carefully. I was started on the lowest possible dose by my GP. My endocrinologist thought this was too conservative for the severity of my condition, and the dosage was doubled as of today.

Once stable, everyone I’ve spoken to has had to battle to get repeat tests when they have suspected that their dose needs adjusting. In these cases, the patient has always been correct in recognising the symptoms of low thyroxine levels.

The dose I’m now on is still fairly low. It takes 4-6 weeks for thyroxine levels to build up, so I have to bear in mind that I won’t feel better immediately. It means waiting 4-6 weeks before my next blood test if I want an accurate assessment of whether the medication needs increasing further (it will probably need several increases).

Added to all this, I have a mysteriously low calcium level. I already have osteopenia and take calcium and vitamin D supplements and eat enough dairy to keep UK farmers in business. In the last 18 months, I have gained weight and increased my calcium intake to try and reduce the likelihood of osteopenia becoming osteoporosis. My calcium levels briefly returned to normal and have fallen again, suggesting I’m not absorbing the calcium I’m taking in.

I have now been prescribed a much stronger supplement, but I’m baffled as to why this is necessary. The endocrinologist has advised my GP to test me for Coeliac’s Disease in case something is preventing me from absorbing the nutrients I’m eating. I’m also craving salt in a way that should be extremely unhealthy. This can be a symptom of Addison’s Disease, but my blood pressure is normal, which doesn’t fit with that diagnosis.

Both Coeliac’s and Addison’s are autoimmune conditions. Having Hashimoto’s roughly triples my likelihood of developing either of them. I’m not sure I fit with either diagnosis, so I’m hopeful that these symptoms are somehow related to my thyroid. Either way, I can’t afford to have low calcium, and untreated Addison’s can be life-threatening, so both conditions need ruling out. This should be done alongside my next thyroid function test.

In all likelihood, Hashimoto’s is the explanation for everything. I seem to be getting more rather than less tired, but I’m hopeful the increased dose of levothyroxine will help. I’m less bothered by the other symptoms now I understand them, but the fatigue is all-consuming. It’s hard to balance doing enough to prevent me from becoming a recluse without doing so much that I can’t function. I apologise to everyone suffering with an underactive thyroid – I didn’t appreciate how debilitating it can be until now.

I’ve been extremely touched by the responses to my previous blog on social media. The writing of it was cathartic, but I hesitated before sharing it as I wasn’t sure how interesting it would be to anyone not suffering from this condition. I know that not running big miles doesn’t change who I am, but I feel quite lost without it and appreciate the support of the running community.

I’m extremely grateful for the last 1300 days of runstreaking. They have given me the level of fitness to be able to keep running a little bit, even when I’m not at my best. I didn’t celebrate Day 1300 by running 13 miles or even 13 kilometres. Whilst it’s fun to play with the numbers when I can, the streak isn’t about forcing myself to run. It’s about getting out every day and enjoying it. I ran fewer miles at a slow pace with my boy, and I’m happy I can do that.

I will keep plodding on. I hope to get back to the long stuff sooner, but later will do. I am extremely grateful to be able to run at all. I know many people are not as fortunate. That doesn’t stop me from being frustrated, but perspective is important. Writing helps me retain a little of that. Thank you for reading.

Why I’m taking a sabbatical from ultras

If you’d asked any of my running friends last year who was most likely to be writing a blog with this title in 2019, I doubt I’d have been top of the list. Or even on the list. Shit happens.

In November, I went to my GP to ask for my thyroid to be checked. My Thyroid Stimulating Hormone (TSH) has been ‘borderline’ for many years, suggesting that my pituitary gland was having to kick my thyroid a bit harder than usual to get it to do its job. It had never got any higher than borderline, so it was assumed this was just ‘normal’ for me.

However, I asked for another test because I was getting increasingly frustrated by my inability to keep myself warm and wondered if my thyroid was the culprit. The test results again came back with a borderline TSH level and I didn’t think much more about it.

Shortly after this, I was hit by a barrage of stressful events. My Dad lost his sight. On my way home from visiting him, I was two cars behind a fatal accident and witnessed a fairly horrific scene. Within a few days I had my first ever chest infection. Any one of these or subsequent stressors may have been a trigger. Whilst I took them in my stride, it seems that something triggered a genetic vulnerability to autoimmune conditions (Dad has lupus). It took me a long time to get my energy back after the chest infection, and I probably didn’t completely get back to normal.

I have DNSd a number of races this year. My explanations were that I was too busy with moving house or had too much going on or they were too far away. Those things were true, but I would’ve raced anyway if I was my usual self.

I did manage to turn up to a 30-mile LDWA event on 10th February, but ran it as a social with a friend. That was the first time I noticed one of my feet had pins and needles. I ignored it.

Over the next week, I experienced a combination of pins and needles, tingling and numbness in my left foot two or three times whilst running. It was annoying, but it wasn’t happening at any other time and I assumed whatever it was would go away.

On 19th February, I woke up with both hands completely numb. Subsequently, my left foot went numb whilst running. Over the next few days, at least half my runs resulted in one or both of my feet going numb. My hands were intermittently numb, but this wasn’t triggered by running.

By the end of February, this was happening every day. It wasn’t constant, but I was experiencing variations of numbness, tingling and pins and needles in any or all of my extremities for a significant part of each day. I was also exhausted, although I attributed this to other things.

I went online to try and book a GP appointment. There were no pre-bookable appointments available for over 3 weeks. The next day, I phoned the surgery at the time they usually release on the day appointments. I was told that on the day appointments no longer exist. They work on a 3-4 week book-ahead system. If I deemed myself to be a ‘medical emergency’, I could go on the list for a ‘triage’ phone-call.

Quite clearly, this was not a medical emergency. If it was, I’d be stupid to phone my GP rather than 999. However, I deemed my problems to be ones that I couldn’t live with for another 3-4 weeks and I went on the list.

I assumed that once I had described my symptoms, ‘triage’ would involve offering me an appointment. I was wrong. The GP I spoke to was excellent, but wasn’t able to see me. He said he would leave a blood-test form at reception and make a referral to a neurologist. All without any basic tests such as blood pressure, reflexes etc. The form had to be collected from a surgery that isn’t the one I’m registered with as five surgeries have recently merged and the doctor I spoke to was based at a different one. This is the third surgery I’ve been with since moving to Bedford in 2012. The previous two closed down.

Over the next few days, I began to feel increasingly unwell. I had driven for a couple of hours or so to visit my Grandpa who was recovering from a stroke. The long drive resulted in twitching muscles in my left arm and my right little toe. I had a headache and felt sick and was beyond tired. I assumed this was the result of the effort of driving with partially numb feet. The twitching calmed down once I had stopped driving.

The following morning, I was due to be running a marathon. I downgraded my expectations from ‘racing’ to ‘getting round’. However, by the time I had driven for 30 minutes to reach the start, my twitching toe had progressed to muscle spasms throughout my right leg. My hands and feet were numb and I was shattered. I didn’t even get out of the car. I waited for my leg to settle down and drove home.

By the time my blood results came back, I had constant numbness or tingling in my hands and feet, occasional muscle twitches and cramps, debilitating fatigue, brain fog, aches and pains, dizziness and periods of blurred vision. I was sleeping better than ever, but felt like I hadn’t slept for a week. Naps were becoming essential.

The night before I received my blood results, I had already resolved to phone the surgery again regarding my symptoms as I was becoming quite frightened and wanted to see a doctor to put my mind at rest. The text informing me that my results were back came through before I made the call. On phoning for the results, I was told that I would need to speak to a doctor about them and that the first available telephone slot was in 5 days’ time. Rightly or wrongly, I argued to go on the triage list again due to worsening symptoms.

I wasn’t expecting my thyroid to be the issue. I assumed that would be borderline again, and my symptoms seemed to have progressed too rapidly. I wondered if I was deficient in B12, which can cause numbness and pins and needles.

The doctor I spoke to told me I was ‘very hypothyroid’ and needed some medication. He asked if I was tired and feeling cold. He found me an appointment in five days’ time at yet another different surgery. In the interim, he prescribed a low dose of levothyroxine and instructed me to get another blood test in 10 weeks before an increased dose could be considered. I was warned to expect a long process of medication adjustments before I would feel better. I was finally ill enough to get an appointment and I had some answers.

I saw a very good GP on Tuesday of this week. He gave me a copy of my test results. Hypothyroid was an understatement. I questioned whether it was unusual that I had gone from ‘borderline’ to being so unwell in 3 months. He suggested that I have probably had some thyroid antibodies in my system for a long time, and either an illness or stress has triggered a rapid escalation in my immune system response. Basically, I am killing my own thyroid. He ordered an antibody blood test, something that should perhaps have been done years ago. I am awaiting the results, but expect them to confirm Hashimoto’s Disease.

The doctor agreed that I should see an endocrinologist as soon as possible and that the endocrinologist should increase my medication. They will probably be able to be bolder with the dosage than a GP. I also have a few symptoms which could suggest another autoimmune condition. The severity of my thyroid results mean this may well account for everything I’m experiencing. However, other things need ruling out as both family history and already having one autoimmune disease increase the risk of me developing another one. I hope not.

I see the endocrinologist on Wednesday. My antibody blood test results should be back by then. In the interim, I have been managing as best I can. Every day seems to bring a new bizarre symptom – unexplained bruises, eyelashes falling out… I hadn’t appreciated everything my thyroid did until it gave up. Thyroid hormones are responsible for the speed of every cellular process. Too much and everything goes into overdrive; too little and everything slows down.

When cells are functioning slowly, they produce less heat. I find it hard to maintain my core body temperature. My food is digesting slowly, energy is being produced at a reduced rate, my movements are slow, my brain is slow. Think Homer Simpson style thought processes. I live in a brain fog, but I am aware of it and can compensate to an extent. I make lists to try and stop me forgetting things. I give myself more time to do things and try to work in small chunks. I am extremely lucky that I’m now self-employed and can adapt my schedule.

If you know me, you’ll know I haven’t stopped running completely. My recent article tells you why: https://www.runultra.co.uk/Articles/February-2019/The-Runstreaker-Mad-Bad-and-Dangerous-to-Know

Wednesday will be day 1300 of my runstreak. Anything long or fast is out of the question for a while, but I will keep running every day unless I’m either physically incapable or I’m hating every run. When I speak to the endocrinologist, he will probably tell me to take it easy. But I am a high-mileage junkie. I can cut my mileage drastically and still tick the runstreak box. It may seem silly, but I need to run. Hypothyroidism affects mental as well as physical health. Running has always helped my mental health. It isn’t feeling very easy at the moment, but I need to know I can come back to ultra training and not quite be at square one. I crave the fresh air and the scenery.

I also need to tire my dog out. Gus is not far off his first birthday and gradually becoming a fantastic running buddy. I deliberately chose a lively pup with an energetic breed mix and took professional advice about building up his running (he is Cocker Spaniel x Springer Spaniel x Labrador). He is the best decision I ever made. When I’m properly back in action, I want him to be ready to go with me. I am prepared to trade a bit of extra fatigue to get one longer run a week with him (he’s currently at just over 8 miles – short by my previous standards). Sticking to shorter runs/dog-jogs the rest of the time is a huge reduction for me.

I am still getting my head around the fact that I won’t be into double figures any time soon, and ultras could be out for the rest of the year or more. I will take it a race at a time and a day at a time. I will get the balance wrong a lot, but will hopefully learn how to pace myself and then gradually start to feel better once the medication increases.

I have built an identity and a career out of being a long-distance runner. This is a huge lifestyle change. It hasn’t fully sunk in yet. At the moment, running long distances just isn’t appealing. It’s when I start to feel a little bit better that I am more likely to do too much too soon. For now, I am focused on getting a treatment plan in place and adjusting my expectations accordingly. I will be back – watch this space.