On 16th September 2019 I moved to North Yorkshire. For as long as I have been trail running, I’ve had a vague dream of moving to the hills and being surrounded by countryside. Whilst I was working in the NHS, my career was a bigger priority.
When I left the NHS at the end of 2016, there was no longer anything to keep me in a town or city. I lingered initially because my focus was on recovering from a severe depressive episode. Subsequently, I didn’t know where I wanted to move to and dreaded the process of selling my house, so I procrastinated.
Running Hardmoors 30 on New Year’s Day 2019 and spending a few days with Gus in North Yorkshire made the decision on location for me. I then moved very quickly to find a house and get mine on the market. All this was done by the end of January. It took until September to complete the sale of my Bedford house and during this limbo period I received my Hashimoto’s diagnosis.
By the time I moved, my symptoms were improving. My blood results weren’t quite where they needed to be, but they were getting there and I was back up to 20 miles in my running.
I first met Ned while I was preparing to move. He joined us two weeks after we arrived in North Yorkshire. The area is a great environment for dogs and they make my life so much richer.
The last year has been a mix of highs and lows, most of which are documented in my previous blog posts. Since I last wrote, I have seen an NHS rheumatologist. This appointment was initially scheduled for the end of March but was rearranged for August due to lockdown.
The rheumatologist came to pretty much the same conclusion as the one I saw privately earlier in the year. She was a little more definite in making a diagnosis of Fibromyalgia (with an autoimmune background). She would normally refer me to a ‘treatment’ group for information and ways of managing symptoms.
Groups can’t run in the current climate, but I’m confident that I understand the condition and am already managing it as well as I can. In a nutshell, I am supposed to pace things so I don’t fall into a cycle of doing too much on good days and then paying for it by being unable to do anything at all on bad days.
Additional tests carried out during this appointment confirmed that my eyes make a smaller than normal quantity of tears and that I produce almost no saliva at all. I already knew this, but it’s good to have the evidence. Dry eyes and mouth are common autoimmune symptoms. Eye drops help a bit. Artificial saliva products aren’t very effective and the advice I was given is that drinking sips of water regularly is a better option.
Around the same time as this appointment I had a disappointing blood test result. After tests in March and May suggested we had finally got my levothyroxine dose right, my latest result showed my thyroid stimulating hormone (TSH) had risen significantly and my dose was increased again. I don’t know why I need such a high dose of medication or why my TSH is so erratic. Hopefully this latest increase will do the trick.
Aside from all this, I think I’m managing my condition fairly well. I had a significant flare up of symptoms around May/June and was struggling to do much at all for a couple of weeks. I accept that this is going to happen from time to time. Most of the time I am succeeding in recognising when I need to cut my mileage a bit and take everything easy in order to prevent a full-blown flare up. I don’t expect to be able to prevent them completely, but hopefully I can minimise the bad days.
Running wise, both endurance and speed have been problematic since October. I finally got back up to half marathon distance this month. How much further I can push it, I’m not sure. Despite the irony in the fact that moving to the hills was followed by an inability to run long distances, I have no regrets about moving.
My miles are steeper now and my pace is slower, which means time on feet can be significant even over shorter distances. I have learned to embrace hiking on days when my run has to be brief. A mixture of slow running and hiking is much more appealing in a beautiful rural location than it is in an urban one.
Over time, I have found that distance matters less. I enjoy being outside with my dogs. It’s great when I can get a decent run in. If it has to be a short run and a longer dog walk, then that’s ok. I successfully passed day 1800 of my runstreak and have no intention of ending the streak.
I have found that my heart rate goes up into silly numbers whenever I feel particularly bad (don’t look for it on Strava, I hide the data in case anyone calls an ambulance!). I’m going to have a go at using heart rate more to help manage my fatigue and will also try to accept that there is no shame in being significantly slower than I have ever been before.
The pace of life is more relaxed here. That makes it much easier to keep running as I have plenty of flexibility around my work and the rest of my life. I have learned to embrace that during lockdown. For now, I am comfortable with taking things a day at a time and seeing where I end up. I try to achieve small amounts each day. I hope I can persist in that approach. Those demons that tell me I should be achieving more will only result in me being too tired to do much at all. As always, it is a learning curve.
I said that I would wait until the New Year to decide whether I needed to see a rheumatologist sooner than the appointment offered by the NHS. I did wait. I think I was partly procrastinating because I didn’t want to be told that there wasn’t a quick answer and that it isn’t clear what is wrong with me. However, if that was the case then I was going to get that answer eventually and delaying it was just putting off the process of accepting and learning to deal with my situation.
I saw a rheumatologist at a private hospital in York on Saturday. I’m still getting my head round the outcome but I think I’m glad I went. My expectation was that he would want to do further tests before reaching any conclusions. That wasn’t really the case. He did do a thorough examination and ask a lot of questions, but other than a quick urine test (which was normal), no further investigations were needed.
Apparently it isn’t uncommon in rheumatology to see a patient with an autoimmune ‘background’ and the symptoms I’m experiencing. I have some lupus symptoms. I don’t quite meet the full criteria for that diagnosis. I have some ME symptoms but we can’t make that diagnosis because it requires that you first rule out any other possible causes of fatigue. I have antinuclear antibodies. They are causing this although the mechanism isn’t clear.
The conclusion is that my symptoms are those of fibromyalgia but that they are caused by autoimmune activity. I hadn’t expected that. The only reason I hadn’t expected it is because I don’t regard pain to be my primary issue and everything I’ve read suggests that pain is the predominant symptom of fibromyalgia. Even the name, which literally means ‘pain in fibrous tissues and muscles’, suggests this.
I do have pretty much every other symptom of fibromyalgia and I perhaps need to widen my definition of ‘pain’, which the rheumatologist believes can be misleading. The following is the NHS definition of fibromyalgia and its symptoms:
A long-term condition that causes pain all over the body.
As well as widespread pain, people with fibromyalgia may also have:
– increased sensitivity to pain
– extreme tiredness (fatigue)
– muscle stiffness
– difficulty sleeping
– problems with mental processes (known as “fibro-fog”), such as problems with memory and concentration
I tick most of those boxes. I have noticed an increased sensitivity to pain although I attributed it to other things. My hands are extremely sensitive but I thought that was linked to my Raynaud’s Disease. The cold literally hurts my body and rain feels like I’m being hit with needles. I thought that was part and parcel of the reduced metabolic rate that goes with my thyroid issues. When I’m especially tired, every touch is painful just like when you have the ‘flu or another virus. I thought that was just part of being exhausted.
I definitely have fatigue. That is expected with an underactive thyroid albeit I’m now treated. However, my last two results have gone backwards and I’m back in borderline levels and have only managed one blood test in the last year that was roughly where it should be. I’m now on twice the dose of levothyroxine it was predicted I would need.
I’m not too sure about muscle stiffness. Isn’t that normal for runners? I don’t know anymore. I wouldn’t say it’s causing me a huge problem. On a bad day I ache all over but it’s at a low level and less problematic than my other symptoms. I’ve had back trouble on and off for a few years but it hasn’t stopped me doing things. I thought it could be explained by poor posture when running uphill, wearing a heavy pack during races with a large kit list, slumping when doing computer work and any number of other everyday factors.
Sleep is an interesting one. I have been prone to bouts of insomnia since childhood. This was always attributed to an inability to ‘switch off’ – my mind is always busy. I had a particularly extreme period of sleeplessness in 2014/15 which ultimately resulted in me struggling at work, becoming depressed and eventually leaving my job at the end of 2016. I have been prescribed Melatonin since 2016 and it seems to be a little more helpful for me than any sleeping pills I have tried.
Since the onset of my thyroid issues I have tended to over rather than under-sleep. Feeling exhausted after a full night’s sleep is normal with an underactive thyroid. I’m having the same experience again now and the rheumatologist explained that people with fibromyalgia have ‘non-restorative sleep’. They don’t spend much (or sometimes any) time in the deep sleep phase that the body needs to rest and repair. They wake up tired despite believing they have slept well.
Apparently those diagnosed with fibromyalgia also tend to have a prior history of sleep problems and this may be a factor in triggering their symptoms. The way nerve signals are sent to the brain and the way the brain processes them and sends messages back to the body fundamentally changes in someone with fibromyalgia and sleep deprivation may be implicated here.
When this happens, signals from the body that should be dampened down get magnified. A pressure feels painful. Something that would normally cause mild pain triggers amplified pain messages. Sometimes the body sends pain messages to the brain when there is nothing physical to cause it. The pain is real but it’s generated within the body and not externally. The bladder may tell the brain it needs to empty too frequently. The connections between the brain and digestive system get messed up. Sensations are altered – pins and needles, numbness, tingling, muscle twitches and shooting ‘nerve’ pains are all common.
Finally some of my symptoms are making sense. I hadn’t understood how my thyroid could be causing my hands and feet to keep going numb (peripheral neuropathy) or why I was getting muscle twitches and strange sensations. This is what I meant by widening my definition of pain. I might not be suffering debilitating aches but my sensory processing is wonky. I get all sorts of unusual physical sensations, I’m sensitive to bright lights and cold temperatures, I get dizzy and sometimes I need to be in a quiet space with as little sensory input as possible. Apparently it’s not just that I’m antisocial!
Back to the symptom list and it’s the ‘fibro-fog’ that really confirms to me that the diagnosis fits. I know I have mentioned brain fog in previous blog posts. Concentration is a battle. I frequently forget what I was about to do or lose my train of thought. My thoughts get tired. My attention drifts. My brain is cotton wool. I have used my psychology skills to manage this quite well on the surface. I have diaries, calendars, lists: I’m organised but things take me longer than I feel they ‘should’.
To some extent I think this has always been the case. I achieved highly academically and I think people often assumed that because I was bright it came easily. It didn’t. I was seen as a perfectionist or ‘over-working’. My difficulty getting things done on time didn’t fit with my organisation and dedication.
Even when I was successful I always felt on the edge of failure – I was hanging onto the top of a cliff by a fingernail, dreading the moment I would fall. It did all fall down around me a few times. That was seen as a mental health issue. I’m not saying it wasn’t, but the mind and body aren’t separate. The less able I was to meet the demands of my life, the more I struggled with my mood and self-esteem and coped in unhelpful ways. As my emotional well-being declined, I became even less able to meet demands – a vicious cycle I have repeated many times. I concluded that it was something about me or something I was doing wrong. I rarely asked for help.
I’m looking back and wondering if I’ve had antinuclear antibodies and a level of fibromyalgia for a long time and it’s now flared up. It’s possible I’m overthinking. I’ll probably never know the answer. There’s no doubt that I am managing my current health situation reasonably well because I have reduced the other demands placed on me. What I now have to continue to do is be ok with that. To accept that it is better to be managing well in a less demanding job and a simpler life than to fly high until the next time I crash. I have to accept that mediocrity is ok.
The remaining symptoms on the NHS list are headaches and IBS. I’ve alluded to the IBS above and this is something I was diagnosed with around 10 years ago and have suffered with for longer than that – another reason for wondering whether I may have had fibromyalgia for a while. As I get abdominal cramping as part of this I guess I’m experiencing pain, but the pain doesn’t bother me as much as the bowel symptoms and bloating.
Headaches are something I have struggled with intermittently for most of my life. I was diagnosed with Chronic Daily Headache Syndrome at the age of eleven. They did improve after a few years but I remember them flaring up again in my early 20s. They settled down eventually but I remained a headache-prone person. However, I wouldn’t say they were affecting my life again until relatively recently. I seem to have been getting quite a few lately as well as the odd migraine. As I often get a headache when I’m tired it didn’t seem surprising that they were accompanying my fatigue. But I suppose this is a kind of chronic pain. Does this mean I’ve had fibromyalgia since I was eleven? Answers on a postcard…
The NHS website is a bit like the online equivalent of a GP. It has to know a bit about an awful lot of conditions but it doesn’t specialise in anything. I explored the FMA UK and UK Fibromyalgia websites for a more detailed overview of fibromyalgia symptoms. I found lots more boxes that I seem to tick. Whether this is because I’m looking for a way to explain why I’m struggling or whether I do completely fit in the box I’m not entirely sure.
Additional symptoms described by FMA UK Fibromyalgia UK include:
– Clumsiness and dizziness ✅
– Sensitivity to changes in the weather, noise, bright lights, smoke and other factors ✅ – especially weather. I’ve flirted with hypothermia during a few races when no one else got that cold and it’s a big factor in my wariness of returning to racing.
– Painful menstrual periods – a big ✅ since the age of 12 but more recently I have been diagnosed with endometriosis. A quick google search suggests rates of endometriosis are higher amongst women with fibromyalgia than the general female population. So I guess that’s another chronic pain condition (that has thankfully been under control since I had a Mirena [IUD/coil] fitted).
– Irritable bladder ✅ – I was diagnosed with an ‘overactive bladder’ in 2005. No one ever got to the bottom of why. I have been on a medication that helps a bit since that point.
– Dry eyes and mouth ✅ – see my previous blog post.
It’s important to note that fibromyalgia is a syndrome rather than a disease. It’s a label for a collection of symptoms that seem to go together but not for a disease process. Therefore, the cause isn’t necessarily the same for everyone. The rheumatologist believes that anti-thyroid and anti-nuclear antibodies have triggered disordered sensory processing for me. Flare-ups of antibody activity seem to have been linked to viruses – a chest infection prior to my thyroid issues and a stomach virus prior to this latest setback.
We don’t know yet exactly how or why antibodies have this impact on sensory processing in some people. Sleep may be a contributing factor or a result of the immune system dysregulation. Not everyone with fibromyalgia has these antibodies, so there are other ways in which this syndrome can occur. However, it is more common in people with autoimmune conditions.
Perhaps this shouldn’t be surprising. My immune system thinks that my own cells are a bug of some kind. It is responding as though I have a virus. My thyroid tissue is dead and the anti-thyroid antibodies can’t now make my thyroid issues any worse, but they are still being produced. No one is exactly sure what anti-nuclear antibodies do but they don’t like certain proteins within cells. We all feel tired and depleted after battling a virus. My body thinks it is constantly under attack and is battling itself. Somewhere along the line that has disturbed the way my brain and body communicate and things just don’t feel as they usually would and my energy is being used to fight my own body.
If this sounds confusing it’s because it is confusing. My rheumatologist doesn’t claim to fully understand it and I most certainly don’t. I’m trying to – perhaps too hard. I like things to make sense and connect. I want answers. They aren’t there. The medics know this happens and that fibromyalgia exists. We are a long way from fully understanding it and even further from finding a cure or even an effective treatment. But either I have been unlucky enough to have IBS, an overactive bladder, endometriosis, chronic headaches, peripheral neuropathy, fatigue, autoimmune thyroid disease, ANA antibodies, dry eyes, sleep problems, a tendency to become hypothermic, a mood disorder and a host of other things or these conditions are all linked. It may be a bit of both of course – some may be linked and some may be coincidental.
In terms of treatment, I was offered a short course of steroids. These would suppress my immune system and prevent it from attacking me. The rheumatologist was willing but not overly keen to go down this route. I was even less keen. Steroids have a LOT of side-effects. For someone with an autoimmune condition that attacks a major organ they may be a necessity during a flare-up. For someone who has ceased to function the side-effects may be worth it. Even in these cases they aren’t generally used long-term because of the adverse effects and because suppressing the immune system also leaves you vulnerable to infection.
Steroids are an option if things get significantly worse. For now I don’t think the benefits would justify the side-effects. For all that I have harped on about symptoms here, I am functioning. Not as well as I want to but better than many who are managing more severe symptoms. On top of that, if viruses are what trigger autoimmune flare-ups for me then the last thing I want to do is suppress my immune system. I’m already taking enough pills to sink a ship. I don’t want more unless it’s absolutely necessary.
Another option I was given was a drug to dilate my blood vessels to reduce my Raynaud’s symptoms and help me tolerate the cold a bit better. Unfortunately, those drugs don’t just dilate the blood vessels in the extremities. They dilate all of them, including those in the brain, and can cause problems. I think I’ll stick with being cold.
There is no long-term solution. No cure. This isn’t going to kill me but it isn’t going to go away either. The preferred option of my rheumatologist is that I learn to manage this and attend follow-up appointments so that other treatments can be considered if things get worse. I hadn’t yet cancelled my NHS appointment, so I plan to use that as my follow-up and take the report from Saturday’s consultation with me. That will also give me an opportunity to receive a second-opinion. I don’t doubt what I’ve been told, but two opinions is probably a good idea when you’ve been informed that you aren’t going to get better.
That’s not to say there won’t be any improvement. If I’m currently experiencing a flare-up triggered by a virus then things may get a bit better over time. If that’s the course this will follow then there will inevitably be future flare-ups. I will never be completely free of symptoms. There is still room for improvement on the thyroid side of things and I’m hoping my latest medication increase will have some benefit.
All that being said, my current activity levels are high by most people’s standards. They just aren’t what they were. I don’t know if I can run an ultra again but I seem to be coping better with a medium length run every day (and shorter if it’s a busy day or a bad day) than I did when I tried to get one long run in every week.
I no longer have the endurance I once did. My rheumatologist’s opinion is that I might be able to gradually get back to the long stuff again if it’s really important to me but that I would pay a higher price in terms of recovery. I am taking it a day at a time. I don’t want to say ‘never again’ just yet but that may happen. If the price of running an ultra is weeks or months of being wrecked then it’s not worth it.
I completely respect those who stick two fingers up at worse health issues than I’m dealing with by completing amazing races. My personal fight is to keep running every day. The runstreak comes before races. I’m not prepared to be out of action and I also don’t want to be miserable.
I was an ultra runner for a few years. I couldn’t have crammed many more races into that time and I had a blast. I made some life-long friends. I don’t want to ruin it by dragging myself round a race to prove to myself that I can. Running has been my way of dealing with stuff. It makes me feel better. If I can get to a point where I can enjoy a race again then I’ll go for it. If not then the runstreak is my way of fighting. If pushing myself too hard is going to end the streak then mabye I’m not an ultra runner anymore. I’m not going to lie – that is pretty shit.
The management side of fatigue and chronic health conditions is more psychological than medical. I know this stuff. That doesn’t mean it’s easy. I have to learn to pace myself and not overdo things on good days to then do nothing at all on bad ones. Physical exercise has been shown to be beneficial for both fibromyalgia and thyroid disease. There is obviously a limit and rest is also beneficial.
I need to not put pressure on myself to do what I think I ‘should’ be able to do. At the same time, I need to avoid becoming a recluse if I want to ensure that my mood remains stable. I have to learn what my body can and can’t cope with and recognise if things are getting better or worse. I’m lucky enough to work from home and have relatively few demands placed on me. That allows me to continue to run. If I have busy periods when other things are required of me then I may need to run shorter distances or streaksavers.
Running is still beneficial at the minute. I have given up trying to get any pace back. It takes too much out of me. I can still enjoy getting out in beautiful surroundings. What I haven’t had for a very long time is that feeling of effortlessness when you imagine you could just run forever. That is what drove me towards the long stuff. I’m trying to come to terms with the fact that I may never feel that again. I miss it. I need to stop trying to chase it and just enjoy what I can do for what it is. Yes, it frightens me that things could get worse and I may not be able to keep doing what I’m currently doing. Hopefully that won’t happen and I don’t want to dwell on it.
I haven’t written this because I want sympathy. I know that some of the people who will read it are battling chronic health conditions of their own and would give their eye-teeth to be able to run every single day. I’m not suggesting that I’m bed-bound or have no quality of life. What I am suggesting is that there has been a change compared to what I was previously able to do and that that feels hard sometimes. I needed to write this to help me process a diagnosis that will have some impact for the rest of my life. I hope that it may also make enough sense to give anyone interested an understanding of why I may struggle to do certain things at certain times.
I will cope. It won’t be perfect but I’ll learn to manage this. I’m grateful that I had built up enough fitness when feeling well to enable me to keep fairly active and enjoy the countryside around me even when I’m not firing on all cylinders. My dogs give me a focus and I’m not sure I’d be coping as well without them. There are lots of good things in my life. Feel free to remind me of this whenever I get despondent or feel frustrated.
Since my last post in October things haven’t been great. The cause of my dysentery turned out not to be Shigella but a nasty bout of viral gastroenteritis that caused inflammation and bleeding in my intestines. The symptoms cleared up shortly after I last blogged but I still haven’t bounced back.
I didn’t run Goathland Marathon in November. Nor did I run Roseberry Marathon last weekend. I will now have to pull out of Hardmoors 30 on New Year’s Day. Even if I feel 100% by then, I am just not fit enough. I’ve been running, but I’m not logging the long miles and I’m not moving fast enough to guarantee I’ll be able to stay warm if the weather takes a turn. I’m hoping I might pick up enough to be able to drop down to the 15-miler, but that’s doubtful at this point and it may be another DNS. I’d rather not race than race and be miserable for several hours.
I don’t know what the problem is but I don’t think it’s my thyroid. It doesn’t appear that the gastroenteritis had a significant impact on my hormone levels. A blood test shortly afterwards was the best result I’ve had to date – a TSH of 1.3. I feel worse than when my TSH was borderline and no better than when I was significantly hypothyroid.
I gave myself a good few weeks to recover from the bug before I started to think something else might be going on. I was surprised that my thyroid test was so good as I was back to sleeping far too much, feeling freezing cold all the time and running like a tortoise on a path of peanut butter.
I gave it a bit longer. I started feeling dizzy and as though I wasn’t getting enough oxygen (but I wasn’t anxious and my heart rate was normal). The pins and needles, numbness and tingling in my extremities that I’d had when first diagnosed with hypothyroidism were back. They had seemed to clear up once I started a mega-dose calcium supplement. My calcium level is normal now but those symptoms returned. My eyes were ‘gritty’ and dry. I was achy and exhausted. My brain was cotton wool.
I’ve had Raynaud’s Disease for years. But not like this. Winter has become excruciatingly painful. A mere breath of cold air or even getting something from the freezer is enough to cut off the blood supply to my hands (and feet, nose and ears depending on the trigger). The cold hurts but once the numbness kicks in it’s not too bad. My hands will turn white then blue/grey/purple and I can’t untie my laces, fasten a zip or unlock my front door but I don’t feel much. It’s the re-warming that I dread. In Raynaud’s the blood vessels constrict too much when cold so you lose the blood supply to the extremities but then they dilate too quickly when they warm up. They turn red and the pain is enough to leave me sobbing (but with no actual tears, which I’ll explain below).
I have often come in from a run or a dog walk (and I’ve been wearing gloves or mittens) and been unable to remove my shoes or take the dogs’ harnesses off due to numbness. I have then ended up sitting on the stairs waiting for the throbbing, burning and searing pain to pass as my hands warm up so I can function again. This probably sounds melodramatic but it’s real. I would take the dizziness over the Raynaud’s any day. On top of that, I seem to be struggling with the cold throughout my body. I’m not generally a cold-blooded person unless there is something else going on like not eating properly or having low thyroid hormone levels. This winter I am extremely sensitive to the cold and once I’m cold I find it impossible to warm up unless I have a hot bath. Getting cold seems to leave me feeling utterly exhausted, shivery, achy and tired. I’ve started running on country lanes rather than trails so my feet stay dry. This is not me!
Raynaud’s Disease is relatively common. For most people, it isn’t associated with other conditions and it doesn’t cause long-term damage or lead to complications. Raynaud’s Phenomenon is more severe and is secondary to systemic/connective tissue autoimmune diseases such as Lupus and Rheumatoid Arthritis. Can you see where this is going?
The fact that my Dad has Systemic Lupus Erythematosus (SLE, the most common form of Lupus) means I have always been at higher risk of an autoimmune disease than the average person. The predisposition to develop a confused immune system is genetic. The trigger is environmental but we don’t know enough about this. A virus is often the apparent trigger. I developed full-blown Hashimoto’s Disease following a chest infection. Once I had that, my risk of developing pretty much any other autoimmune disease rose further. Most autoimmune conditions are more prevalent in women than men, so that’s another strike against me.
All this being said, the risk factors are only increasing the likelihood of something that isn’t that common in the first place, so it was far from certain that I would develop any autoimmune disease or that I would have more than one of them. Unfortunately it is beginning to look like the latter is a possibility. Was my stomach virus a trigger for a new disease? I don’t know, but something isn’t right.
Initially I thought I might be anaemic. I briefly had low haemoglobin levels a few years ago and the symptoms felt similar to how I feel now. I spoke to a doctor back in November and had standard blood tests for anaemia and various other things that could cause fatigue. They all came back normal. Which would be great if I felt normal. I began to question if this was all in my head and I’d become a hypochondriac.
Thankfully my GP didn’t suggest it was in my head. Taking into account family history and my Hashimoto’s, he sent blood samples to Leeds for a Lupus and autoantibody screen. They take a while to come back, so I had a three week wait to see my GP for the results. In the interim, my optician found multiple dry patches on the surface of my eyes and recommended some drops (artificial tears). I developed a strange rash on my right foot and was struggling more and more with numb hands and feet and poor concentration. I’ve been reading the same book for weeks. As I write this paragraph, I’m on day three of trying to compose a blog post.
I went back to the doctor for my results on Thursday. My thyroid levels had gone the wrong way, but only slightly and not enough to explain my symptoms (TSH 2.3). My thyroxine dose has been tweaked a little. Most of the other results were normal. One of them wasn’t and this is where it gets complicated. If you’ve made it this far, you deserve a medal. Bear with me while I try to explain something that I’m not sure I fully understand myself. I have a positive ANA result.
ANA stands for Anti-nuclear antibodies. They pretty much do what it says on the tin – they attack proteins inside the nuclei of cells. It’s very common to have a few of these antibodies knocking around in your blood, but if you have a lot of them it suggests your immune system is attacking you. What it doesn’t tell you is which cells and which proteins are affected. On its own, it doesn’t lead to a diagnosis of a specific autoimmune disease, but if the result is negative then it’s less likely (but not impossible) that you have one of the connective tissue diseases such as Lupus, Rheumatoid Arthritis, Sjogren’s Syndrome and many others.
To take Lupus as an example, these diseases can be hard to diagnose. There isn’t a test that is both sensitive and specific. A test that is 100% sensitive will give a positive result to everyone with that condition. A test that is 100% specific will give a negative result to everyone who doesn’t have that condition. An ANA test is pretty sensitive but not very specific. Around 98% of people with Lupus will have a positive ANA. However, people with other autoimmune diseases can also have a positive ANA. To make it more complicated, 5-15% (depending on what you read) of healthy people will test positive.
There are other antibody tests that are more specific to Lupus – it’s unusual for someone without Lupus to have these antibodies so they can lead to a diagnosis. However, only a minority of people with Lupus will get a positive result, so a negative doesn’t really tell you anything. I tested negative for those antibodies. It neither rules Lupus in nor rules it out.
Healthy people testing positive for ANA tend to have a low positive result. The way the result is recorded is quite complicated. In a nutshell, the test needs to differentiate between a normal number of these antibodies that don’t cause a problem and a higher number that suggests the immune system is on the attack. The blood sample is diluted so that there is one part sample and 40 parts test fluid. Fluorescent dye is used and if ANAs are visible at this level of dilution then it’s a positive result. The sample is then diluted to 1:80, 1:160, 1:320 and so on until the antibodies can’t be detected. Most labs stop at 1:1280 and only report 1:80 and above as significant. Anything 1:640 and above is pretty strong evidence of an autoimmune disease unless you have another explanation for the result. If it’s 1:160 or lower and the person doesn’t have symptoms or risk factors suggesting an autoimmune condition, then they may be one of the healthy people who happen to test positive.
Obviously my result has been awkward and come in at 1:320. This suggests an autoimmune condition but needs to be taken in context and requires other pieces of evidence to make a diagnosis. It is moderately high. From my research, it looks like 3% of healthy people would have this result and 97% would not have this number of antibodies. So I could be in the 3%, but given I already have both symptoms and risk factors, an autoimmune disease of some kind seems quite likely.
Some of my symptoms fit with Lupus but I’m not sure it’s a complete fit. However, Lupus can attack any part of the body, so there is no standard symptom profile. My Dad has been unfortunate enough to have Lupus attack his brain and kidneys. Another person might suffer from rashes and joint inflammation.
Alongside my dry eyes, I have a very dry mouth and I have lipsalves in every room of my house, my pockets, my handbag and my car because my lips are never not dry. However, I take antidepressants and have always assumed this to be a side-effect. Sjogren’s Syndrome is an autoimmune disease in which antibodies attack moisture producing glands, causing a dry mouth and dry eyes (and often other symptoms and fatigue). It can be primary or it can be a secondary condition associated with Lupus or Rheumatoid Arthritis. Maybe I have Sjogren’s. Maybe I’m overthinking.
Back to the Raynaud’s. Although most people with Raynaud’s Disease don’t have an autoimmune condition, 10% will develop one. Raynaud’s alongside something like Lupus or Sjogren’s is secondary Raynaud’s and more severe. This was a red flag for my GP and one of the reasons I received a Lupus screen. My Raynaud’s symptoms are definitely worse than they have ever been.
What is needed now is a specialist opinion and further tests. There are plenty more antibodies that I haven’t been screened for and plenty of other kinds of tests that can be done. There’s no guarantee of a clear result at the end, but there might be one. My GP has been fantastic and referred me to a Rheumatologist (they deal with the connective tissue autoimmune diseases). My appointment letter arrived yesterday. It is on 25th March.
In the grand scheme of NHS referrals for a non-emergency, March isn’t that far away. Whether I’m prepared to wait that long remains to be seen. Whilst I would prefer to stay with the NHS, I’m also fed up of feeling like this and fed up of uncertainty. If I hadn’t already spent most of this year battling my thyroid disease, I might have more patience. I’m not feeling very patient just now. If I know what the problem is then I will learn how to manage it and I will rise to the challenges it throws at me. I can’t do that when I don’t know what I’m dealing with or even if I will be diagnosed with anything at all.
I am going to wait until the New Year and hope things pick up. If they don’t then I will look at my options for going private. It goes against the grain but I want my life back. I have new work opportunities on the horizon. I’m now living in a beautiful place with two lively dogs that I love to bits. I should be out there living and loving my life not sleeping it away.
2019 is the year I was ill. I want 2020 to be a better year. I haven’t given up hope that this is possible but I do get frustrated with how little I am achieving. I would love to be posting something more positive next year. I want to be an ultra runner again.
If I needed a reminder of how far I’ve come in the last couple of months, it arrived in the form of feeling like I’m right back at square one. Last Saturday, I thought I had a touch of ‘runner’s tummy’ on my long coastal run, but these things happen (to me, anyway) and I wasn’t overly concerned. The run itself went well and I was happy to make it up the final steep mile-long hill at something closer to a run than a walk.
That night, when my dinner defeated me and I poured a glass of wine down the sink, I suspected all was not well. The next morning I knew it wasn’t. Still, these things usually only last 24-48 hours, and a couple of days of streaksavers wouldn’t do me any harm.
By Tuesday, I was worse rather than better. I don’t want to put anyone off their food, so I’ll try and limit the details (but you’re probably a trail runner if you’re reading this, and you probably shit in the woods). I set off on another 5km streaksaver feeling drained and a bit dehydrated. For the first time, I couldn’t make it to 5km, and the symptoms were scaring me. I saved the streak with just over a mile and walked home whilst phoning the GP surgery. I explained I thought I might be contagious so would probably be better speaking to a doctor than making an appointment. I was told the duty doctor would phone me back.
Following the phone call, the provisional diagnosis was dysentery and the advice was not to risk passing it on by attending an appointment unless I had a fever or couldn’t keep hydrated. They would send a sample to the lab and I should drink lots of water, continue using Tailwind to replace electrolytes and try to eat if I felt able. So many of these bugs are becoming resistant to antibiotics that the lab results would be unlikely to make a difference. They would only treat me if the symptoms didn’t get better on their own, but they needed to confirm I definitely have an infection as otherwise something else is very wrong.
I won’t get the results until next week and the symptoms are beginning to ease. I suspect the culprit will be Shigella – the most common cause of dysentery in the UK and a definite fit with my symptoms. If you want to know, then feel free to google ‘dysentery’ and ‘Shigella’. If you’re of a sensitive nature or having your tea, then I’ve just been poorly. There was also a death in the family on Wednesday, so it’s been a rough week, and my illness is minor by comparison.
Yesterday was my first run of more than 5km in a week. A slow 4.6 miles and I pretty much hiked the hill. Gus was delighted to get out for more than the 10-40 minutes he’s been getting this week. I then walked Ned for 15 minutes whilst trying to focus on the training that’s been lacking whilst I’ve been ill.
Goathland Marathon is in three weeks. I haven’t run further than 20 miles since February. This weekend should’ve contained a confidence-boosting 22-23 miler. Under the circumstances, that would be silly even by my standards. The symptoms may be completely gone by Monday, but I haven’t been fully absorbing either food or my thyroid medication for a week. I am depleted and exhausted. Three weeks is plenty of time to recover, but not if I don’t put as much effort into recovery as I usually do into running. I may have to wing it at Goathland, but that has a higher chance of success than trying to train too far or too fast before I’m ready. Training has been ditched in favour of healing.
I am napping in the day again and back to feeling freezing cold all the time. I don’t know if that is just down to the illness or if some of it is because my thyroxine levels have fallen. It probably doesn’t matter – the treatment is the same. Both should resolve as the symptoms continue to improve.
Initially, I was focused on the stomach pain and unpleasant nature of the infection. Now that the lack of energy is holding me back more than the symptoms, I feel like I’ve regressed six months.
I haven’t regressed of course – I should feel better much more quickly this time. However, the reality is that I am always going to have to manage hypothyroidism. Most people have an inbuilt feedback loop. If thyroxine levels drop a little lower than normal or the body temporarily needs extra thyroxine, the pituitary gland uses Thyroid Stimulating Hormone (TSH) to tell the thyroid gland to produce more hormone. When things go back to normal, it produces less TSH again. My thyroid gland is dead – my pituitary is trying to prod a corpse. There will only ever be as much thyroxine as I take in tablet form. If my needs change over a prolonged period, a blood test will pick that up and my dose can be changed. But I can’t respond to immediate fluctuations. If I get sick and don’t absorb the medication, my thyroxine levels will drop. If illness or stress cause my body to need more thyroxine, it won’t get it.
I don’t know how this fits in with being an endurance runner. It’s not like there are hundreds of hypothyroid ultra runners queuing up to take part in research to figure this out. Untreated hypothyroidism clearly affects sporting ability. I’m less clear on treated hypothyroidism. I can find research that suggests exercise is helpful for people on thyroid replacement medication. However, the levels of exercise involved make the findings irrelevant to endurance activity.
The research on the impact of running on thyroid hormone levels and needs is inconclusive and also not conducted using endurance athletes. Exercise has a small and short-lived effect on thyroxine and TSH levels. It may be significant or negligible depending on which study you read.
Does that mean higher levels of exercise could have a greater impact on thyroxine levels or that they could alter how much thyroxine the body requires? I don’t know, but it seems possible. Thyroxine regulates metabolism, so there must be some interaction with exercise. I was told by my Bedford endocrinologist that running shouldn’t affect the dose of medication I need. However, I’m not sure blood tests are going to pick up on what happens to my body during and after a long or hard run. From reading the accounts of individuals, it appears there could be some impact. Anecdotal evidence isn’t scientific evidence, but it’s all I’ve got.
Plenty of hypothyroid athletes achieve highly. Examples include Olympian Galen Rupp (if anyone still thinks taking thyroxine gives someone an unfair athletic advantage, then they have never had a thyroid disorder). Hypothyroidism doesn’t have to mean you can’t achieve, but I suspect the journey to achievement may have to be adapted.
Steve Magness, a runner with Hashimoto’s writes ‘You are always on the edge of overtraining, even if your medication is spot on, and you are doing half of what your competitors are…Despite being extra vigilant on recovery, I would be wrecked after races…Is a pill taken once a day that just releases stuff all at once, the same as a normal person whose thyroid secretes hormones when it is called upon to?’. I guess the answer is probably not.
Most people on adequate thyroxine replacement doses live normal lives. But if we’re really honest, most people don’t explore the limits of their body’s capabilities. That is not intended to be in any way critical or patronising. We all choose our challenges. Society is full of people pushing their limits at work, at home or in whatever domains they concentrate their energies. A relatively small proportion of us choose to push the limits of our physical endurance and use our bodies as heavily as the activities for which they were originally designed. I think that might affect the experience of hypothyroidism. Treatment enables a normal modern (sedentary) lifestyle. Does it enable a physically ‘extreme’ one? I’m still figuring that out.
I am in no way writing myself off here. I am determined not only to get back my fitness, but to come back stronger. I may have to adapt in order to achieve that. Only once I’ve had a TSH level at 1.5 or lower for several months will I know if I can clock up the kind of miles I used to on a regular basis. I doubt I’ll ever be a low mileage runner, but if I need to train smarter and a little less far, then so be it. I will also never race as frequently as I did in 2017 and I may need to pay more attention to recovery. All of this is unclear at the moment. It’s likely I will be inconsistent – any bug like this one is going to have a bigger impact and there’s no point throwing a tantrum in the process.
I will continue to runstreak until I cannot. I will continue to get the balance wrong sometimes. I will progress from streaksavers next week, but I will allow myself to recover. I will not be beaten, but I will probably be frustrated many times. I will try really hard not to take my health and fitness for granted and to be grateful that my condition has a treatment and can be managed. I will probably fail sometimes and need a kick up the arse (but not today, my arse has been through enough). I will enjoy the beautiful area in which I now live and try to do it justice. I will probably also continue to write long and rambling blog posts every now and then. If you’re still reading them, then thank you.
P.S. Please don’t pay me a surprise visit in the next few days. You really don’t want to see me until I’m no longer contagious 😬
So much has changed since my last post. I have continued to feel much better than I was, although not quite where I want to be. It’s been enough for me to begin to claw back some fitness. I became an ultra long-distance runner by just bimbling around for a very long time. I’ve been trying to get back there with a little more focus. I’ve still done plenty of slow stuff, but I’ve added some structured sessions to work on my pace and hill running. I’m beginning to see benefits and I’m also testing out sessions to use in my coaching, because taking on more work is starting to feel possible.
This week has been different. I have temporarily ditched the structure. Why? Because I have finally moved. I got to my cottage in North Yorkshire on Monday evening and I’ve been exploring. I’m sussing out routes, working out where I can take Gus and getting used to much more hillage. I’m also preparing for the arrival of a second dog and need to know where I can take a puppy on his first walks.
Gus enjoying his new surroundings
The move has been planned since January. A stagnant housing market in Bedford (I blame Brexit) and my Hashimoto’s diagnosis delayed things. Not only was I struggling to sell, I also could not get my head around the practicalities of moving when just getting out of bed was an achievement. The physical side of packing up was utterly beyond me. As luck would have it, when I began to feel more proactive, I found a buyer. There have been some hitches, and we still haven’t completed, but I have moved and am expecting to complete on the Bedford house this month.
The irony is that my health prevented me from packing up and going, but now that I’m getting better I have ended up in a much better healthcare situation. I have moaned in every previous blog post about the poor GP service I received in Bedford. It is only fitting that I praise the outstanding service I now have on my doorstep.
I knew I would be due a blood test shortly after moving. I collected a supply of my thyroid medication from my old surgery a week beforehand and then registered online at my new practice before I’d actually moved. This enabled me to make an appointment for three days after moving. An actual appointment. No questions asked, no waiting list.
The ease of getting an appointment raised my hopes that I would no longer have to pay to see an endocrinologist to get my blood results looked at promptly. However, my Bedford GP surgery deemed my previous results to be ‘no further action’ despite them not being in the normal range, so I wasn’t sure if my new GP would agree with the endocrinologist’s treatment plan. I therefore went to my appointment armed with copies of all my endocrinologist’s letters. I needn’t have bothered.
My endocrinologist was aiming for a thyroid stimulating hormone (TSH) below 2. My own research suggested that it should be below 1.5. My new GP had already read the notes that had only just been sent from my old surgery. He told me that he would like to see my TSH closer to 1 than 2. He also checked in on other conditions, and he would’ve had to go back a long way in my notes to be aware of these. When he asked me when I wanted to see him again for a review I was momentarily speechless. It’s been a long time since I could get even a telephone call unless it’s a medical emergency.
This GP gave a shit. He had time to get to know me and to listen. I haven’t had a GP like that since I was a very dysfunctional teenager. It’s amazing what can be achieved when caseloads are manageable.
I’m used to collecting a blood test form from the surgery’s reception, taking it to the hospital and then getting a deli-counter style ticket to wait a very long time for my turn for a blood test. My new surgery do the tests in-house. The doctor went onto the computer and one of the health care assistants was free straight away and I was having blood taken within 5 minutes of finishing my doctor’s appointment. What is even more astounding is that the doctor then texted my results the same evening. I saw a GP, got a blood test and had the results and consequent actions all within 11 hours.
My TSH has come down from 4.57 to 3. It’s still moving in the right direction, but rather slowly. I increased my levothyroxine by 25mgs today and will get another blood test in 6 weeks. I didn’t get as efficient a service as this when I was paying for private treatment in Bedford. It puts my current levothyroxine dose 50% higher than that which the medical algorithms predicted someone of my weight with no thyroid function would require. I’ve always been complicated 🙄.
I’m not disappointed that my results are still not where they need to be. It means that things can get even better than they are now. I am functioning again and I’m able to get out and appreciate my new environment, but it would be nice to need a little less sleep and to see further improvements in my running. I also need to have the resilience to bring up another puppy.
Ned comes to us on 30th September. He will be 9 weeks old. His breeder is keeping him a week longer than usual to give me time to unpack and get Gus settled. I could not have contemplated another puppy a few months ago. They initially need to be taken outside to toilet in the night and they don’t understand the concept of a lie-in. I feel ready to take this on now, and I think Gus will love having a little brother. North Yorkshire is a perfect environment for dogs. It will be hard work initially, but I am so looking forward to bringing Ned home.
Moving is stressful, but I feel like I’ve landed on my feet here. This environment is where I belong. It’s beautiful and the trails just demand running. Hills are plentiful. I stayed in Bedford for too long after I no longer needed to be there for work. There is so much more emotional space up here, but also more efficient public services. I know there has been a postcode lottery for some time for things like fertility treatment and new medicines. I honestly think we should be attending to the postcode lottery that is emerging in basic primary care. I did not move for a better GP surgery, but with the year I’ve had, that now seems like a good reason for someone to move. My faith in the NHS has been boosted, but there shouldn’t be such discrepancies. I will get back to 100% much more quickly just by having moved to a new surgery.
Despite the unpacking that remains, I’m on a high with all the beautiful trails on my doorstep. I’m so glad that I’m well enough to appreciate them, and I’m excited that things should improve further with the latest medication increase.
‘Progress, of the best kind, is comparatively slow. Great results cannot be achieved at once; and we must be satisfied to advance in life as we walk, step by step.‘
– Samuel Smiles
Slow progress I can cope with. Lack of progress was really getting me down. Things have definitely improved since my last post. The brain fog has lifted for the most part and I am reconnecting with myself. I’m running a little bit further and a little bit faster. I’m not where I was last year, but neither am I where I was last month.
It is reassuring that my blood results fit with how I feel this time. The previous reduction in my Thyroid Stimulating Hormone (TSH) from 16 to 8.49 didn’t make me feel better. In the last six weeks, it’s reduced from 8.49 to 4.57. That does feel better.
I can think more clearly, function a little better and only need daytime naps occasionally. I still sleep 10-12 hours a night. This is an improvement, but not normal for me. When the fatigue does hit, it’s still like a tonne of bricks.
If I’d stuck with the NHS, I’d be stuck at this point. The lab now says ‘borderline’, so my blood results never made it past reception. Apparently, GPs these days only look at results if the lab flags up that action is required. If you’ve read my previous posts, you’ll know the lab ranges aren’t useful for someone with a thyroid disorder. We don’t get better until we are at the bottom of the ‘normal’ TSH range and the top of the ‘normal’ T4 range.
The lab range for TSH is 0.4-4.0. The optimal range for someone with Hashimoto’s is 0.4 to either 1.5 or 1.9, depending on what you read. So 4.57 isn’t borderline for me. It’s better than it was, but I need more medication. Unfortunately, ‘borderline’ on the computer means it gets filed under ‘no further action’. A GP would only see it if I was sitting in front of them and they pulled it up on the computer. I can’t get an appointment, so that wouldn’t happen.
All this means that anyone in my situation who wasn’t paying to see a specialist would be told they were fine unless they had the knowledge and confidence to get the actual numbers from the receptionist. They’d then need to interpret them correctly and make an appointment (the waiting list is 4 weeks) and argue their case. It’s ludicrous.
I spoke to my endocrinologist yesterday. He advised me to start alternating between 125mgs and 150mgs of levothyroxine (I’ve been on 125mgs daily for the last six weeks). I’m paying him to write to my GP to ensure I get this prescription. I could live with a TSH of 4.57, but I shouldn’t have to.I want to keep advancing, step by step.
I want to pin a race number on before the year is out. I want to be back doing ultras next year. I am moving to North Yorkshire in September. I want to have the energy to pack and unpack and then I want to be able to enjoy those hills. I also want to build up my coaching business. I don’t want to waste half the day in bed. I’m starting a new life and I want to embrace it.
This will be on my doorstep from September
I appreciate that running an ultra isn’t the goal of the majority of Hashimoto’s sufferers. But I’m sure we all want to get back to our own normality. I used to hold down a highly stressful job. I used to race pretty much every other weekend and thought nothing of logging 80-100 miles per week. I loved it. So I don’t think I’m asking too much to want to get a couple of marathons in before the end of the year and an ultra next spring.
I’m not asking for great results at once. I’m asking to keep great results within sight and not completely out of the question. They would definitely be out of the question if I stuck at 4.57.
I tried to calculate how much longer it would have taken me to get to this point had I not seen an endocrinologist.A conservative estimate is that it would be March 2020 before I would be functioning like half a human being. That’s a full year after my diagnosis. I’m happy to show my workings out to any insomniacs running out of sheep to count, but I’m only factoring in the dose my GP started me on before an endocrinologist intervened and the length of time he recommended waiting between blood tests. I’m not factoring in the difficulty of getting a GP appointment or the likelihood that a GP might use the lab reference ranges rather than symptoms to form a treatment plan. So the reality is it would probably take more than a year to get from diagnosis to ‘borderline’, and then I’d have a battle on my hands to get enough medication to reach optimal functioning.
In 2008-2009, I worked on a research project exploring different service models for the treatment of early psychosis and their impact on patient outcomes. This study didn’t just look at symptoms, it also evaluated the wider impact of psychosis on both individuals and the health economy. We measured the time a person spent in structured activity and the support they required in order to function.
It’s common to measure hospital bed days or numbers of medical appointments to assess the impact of an illness on services. But what about the person who isn’t working enough to meet the income tax threshold? Or the stay at home parent whose spouse has to take carer’s leave when the kids are ill? Or the adult whose parents are still doing their washing, shopping and cleaning as unpaid and unrecognised carers? This all has an impact on the wider economy as well as a huge impact on individual lives. These are the factors that helped justify funding for early intervention for psychosis. However, I can’t help thinking that, on a healthcare level, it’s still the bed days and the cost to the NHS of people whose treatment was delayed that made the difference.
Thyroid disorders don’t impact the NHS in the same way. You’d have to be undiagnosed and untreated for a very long time to need to go into hospital for an underactive thyroid. I don’t think the implications translate into money obviously enough for treatment delays to be seen as a ‘problem’. I’m not comparing it to psychosis, but I don’t think the impact of these treatment delays is acceptable. I imagine most people drag themselves to work and they aren’t popping up in other NHS services or calling ambulances. That doesn’t mean there’s no impact, but the right research isn’t being done.
Using myself as an example, I am self-employed. If I continue to work at my current rate due to fatigue, I won’t need to pay income tax this year. If I didn’t have savings, maybe I’d be claiming some benefits. If I was working for an employer, I’d have taken some sick days. Maybe my performance would suffer and I’d miss out on promotion. If I had children, I’d have needed help looking after them on some days. It all adds up, but it requires thinking across government departments to see this.
I’ve spent a few hundred pounds on private treatment. That hasn’t saved any hospital bed days and won’t have had much impact on the NHS. But it will probably get my income level up 7 or 8 months earlier than would otherwise have been the case. I’ll be a more productive person and contribute more to the economy and society. I’ll also be happier, and that really should count for something.
I’ve had a look for this kind of research. I’ve searched for the impact of thyroid disorders on the economy and on individual functioning. I’ve looked for impact studies relating to treatment delays. I can’t find much. That doesn’t mean it’s not there, but if there was a decent body of high quality research, I’d have found it.
Why is this research not there? Presumably because it’s either not attracting research interest or it’s not attracting research funding. So this is one for the health economists or the medics doing research. What is the wider impact of thyroid disorders on socioeconomic activity? Why are GPs recommending waiting 10 weeks between blood tests when the research shows levothyroxine reaches full effect in 3-4 weeks? What is the impact of this delay in treatment? How many sick days per annum can be attributed to thyroid disorders? What are the outcomes of thyroid patients treated by an endocrinologist compared to those receiving treatment as usual from their GP? What is the cost of specialist treatment, and is this justified by the outcomes?
My blog isn’t going to change things. If enough people ask questions and highlight issues, then just maybe someone will be interested enough to do a small scale study for their MSc. If the results are interesting, maybe someone else will get funding for a bigger study. Maybe this will begin to inform practice in 5 or 10 or 50 years’ time. Maybe it won’t. Maybe I am wasting my breath, but it won’t do any harm. If not thyroid specific research, then we certainly need people to wake up to the consequences of the shortage of GPs. Brexit has the potential to destroy an NHS that, in many areas, is propped up by professionals trained outside the UK. On that note, now is probably the time for me to stop writing before this rant becomes entirely political.
On a positive note, I feel more like a runner again. I’m trying to be excited rather than daunted by the prospect of building back up. My running buddy is certainly loving it! The hills are beckoning.
I try very hard to stay positive. Many people have complimented me on my attitude towards dealing with hypothyroidism. I have said plenty of times that I am grateful for what I CAN do. I know that having a treatment that will work eventually puts me in a better position than many people struggling with other illnesses. It doesn’t mean that I find this process easy.
I am bored. My days are all very similar. I want to do more. When I try, I end up having to do less because I’m so bloody tired. Some days the ‘more’ is worth the backlash. Some days it really isn’t. There does not seem to be a way to be both productive and not feeling like death. I need to get out and run a little and walk my dog. I’m grateful I can do that. I’m not getting beyond that consistently. Some days it feels like I’m making slow progress. Other days I feel like I’m back at square one.
I knew this would not be a short journey back to health. However, I think I assumed that each medication increase would bring a small improvement in my blood results and a small improvement in my energy levels. I expected that each small improvement would motivate me to remain patient. I didn’t expect to get several months down the line with no consistent improvement and some worsening of symptoms.
Initially, my blood results got worse rather than better. In the run up to last week’s blood test, I couldn’t see that there was any possible outcome that would be positive. If my thyroid levels had improved, then the increased brain fog of the last week or so had to be either psychological or a sign of another illness. If my levels hadn’t improved, then it would be confirmation that I was no further forward than when I was diagnosed.
I have seen the endocrinologist today. My levels are now heading in the right direction, but there is still a long way to go. My thyroid stimulating hormone (TSH) has come down from 16 to 8.46. It needs to be below 2, and preferably 1.5 or lower. The actual levels of thyroxine (T4) in my blood have increased a little. They need to be much higher. My question as to whether 8.46 should feel better than 16 received a vague response – ‘some people would feel better, others don’t improve at all until we get the numbers in the right range’.
I have developed a mild tremor in my jaw as well as having a brain like scrambled egg. I’m not sure whether this is thyroid related or not. My endocrinologist is reluctant to test for anything else until my thyroid is stable. One thing at a time. I get that. But I just want to feel better.
My medication has been increased again. It had been expected that the current dose of 100mgs would normalise or nearly normalise things. Apparently, some people just need more hormone than predicted, and we don’t really know why. I’m one of those people. I’ll start taking 125mgs tomorrow and have another blood test in 4-6 weeks. I need to be patient for a bit longer.
It has become scarily normal to spend 12-20 hours a day sleeping, resting and recovering from a few hours of functioning like a normal person. When it gets me down, I try to do things that boost my mood. Then I end up needing a nap. Finding a balance is incredibly difficult.
Fatigue is subjective and almost impossible to measure. Is mine greater, lesser or the same as the average for a person with an underactive thyroid? No idea. I often don’t even know if it’s greater, lesser or the same as it was for me a day or even an hour ago. I just know I’m tired. Tired in a full-body, all-consuming way. And there’s nothing I can do about it. If I’d been up all night finishing a piece of work, I could comfort myself in a job well done and know I’d feel better after a good night’s sleep. If I’d been out drinking last night, then I’d down lots of water, eat, get an early night and then be fine.
Currently, I can crash out for 12+ hours and feel just as tired when I wake up as I did when I went to sleep. But if I don’t spend at least half my time asleep, then I’ll feel even worse. How do you distract yourself from something so crushing, especially with poor concentration?
Simple tasks feel hard. I can no longer do two things at once or even remember why I went upstairs. The logistics of trying to manage minimal commitments can be overwhelming. Just working out what time I need to get up in order to make an appointment or what time to leave to get somewhere can seem incredibly complicated.
I recognise some of this from previous episodes of depression. But I don’t think I’m depressed. There’s no doubt that this situation impacts on my mood, but I still have a desire to do things – a wish to feel well and live my life. I haven’t given up, but I’m beyond fed up with feeling like this. I know it will get better and I know it could be far worse, but I reserve the right to want something more. I want to live rather than just exist.
My positive attitude needs kicking back into place sometimes – I feel like a very boring broken record. I have little to say about my daily life these days other than that I’m tired. Thank you to those who keep listening to the broken record.
I have to believe that this medication increase is a step forward, because I don’t like the alternative. I had a better day yesterday, only to struggle again today. It’s hard not to be disappointed when that happens. Hopefully there will be more good days in the next few weeks. Watch this space.
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.
Experience should have taught me to delay Monday’s rant until I’d actually spoken to a doctor. I was bound to have more to rant about today.
Having known since Monday that I was still hypothyroid, I assumed the phone call would be a simple case of confirming I needed more medication and finding out the results of my other blood tests. It was almost that simple. Almost.
My other test results are normal, so that is one piece of very good news. However, my thyroid results have actually got worse since I started the medication. My TSH level has risen from 13.9 to 16. The medication should be bringing it down.
I can’t explain this result. What’s worse, neither can the GP. I asked several times if this is unusual and the question was dodged every time. I don’t think she knows. She suggested I should get a further private appointment with an endocrinologist so he can ‘tell her what to do’. Seeing him on the NHS isn’t an option if I want an appointment any time soon. Probably even any time this year.
After my previous appointment, the endocrinologist didn’t want to see me again unless my results showed additional disorders. Hypothyroidism should be manageable in primary care and on the NHS. However, the GP has no appointments available to offer me. She won’t even have time to write my prescription until tomorrow. She’s never met or spoken to me before and isn’t even from the surgery I’m registered with.
I’ll get a prescription for a higher dose of levothyroxine tomorrow. It has to be taken at least an hour before breakfast, so I won’t start it until Saturday. At this point I’m not feeling very optimistic. I’ve been taking 50mgs for 6 weeks and I’ve got worse. It doesn’t seem likely that 75mgs will be enough to not only halt the decline but also get my TSH down into the target range. It’ll be another 6 weeks before I can have a blood test to confirm that. And I’m so very tired of being tired.
One thing this process has taught me is to have more confidence in my judgement. I had queried thyroid issues before they showed up in my blood results and was fobbed off. I had felt like I was getting worse in the last couple of weeks but assumed it was in my head and I just wasn’t being patient enough. Again, the signals my body was sending me were correct, as was my interpretation of them. I have contacted the endocrinologist’s secretary and will see if another appointment gets me an explanation.
It is dawning on me that even small improvements could be a long way off yet and that I will have lost a lot of fitness by the time I’m better. I will get that back. I won’t get back the hours and hours I’m wasting asleep. I also now have a work issue. Today brought extra bad news – RunUltra will fold on 12th May, so I will need to find some more coaching clients or an additional job that can be done from home and managed around my current energy levels. I’m trying not to think too much about that just now, but I need to have things to occupy me that don’t make me worse. Obviously I also need to earn.
I am trying to avoid Dr. Google. If anyone reading this has Hashimoto’s Disease and knows why I might be getting worse, I would love to hear from you. I am wondering if the autoimmune issue is escalating and I would have had an even greater increase in my TSH without the medication. That seems a logical explanation, but may well be the wrong one. I am not good with uncertainty, so hopefully I’ll have some answers soon. The medication increase has to be a step closer to feeling better, so I’m trying to stay positive.This doesn’t seem a fair distribution of nap space!
Clearly, there’s still the wider issue of a struggling NHS at play here. I’ve had some excellent NHS treatment in the past. I worked in the NHS for 8 years. I believe in the ethos behind it and the clinical staff working in it. I don’t want to see a two-tiered healthcare system. But if I don’t go private on this occasion, I’m not sure the NHS is able to offer me adequate care. If I can’t work then I can’t contribute to the system, not to mention the impact on my quality of life. I feel like I have no choice, and that’s a very sad thing that goes way beyond my personal situation.
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.