Firstly, let me say, I’ve been working on this for over a year. Most of the time I just don’t have the energy or brain-power to focus.
When I found out that I have Hashimoto’s Disease, I had no clue what it was.
A year and a half of research later and I have a little more understanding. I’m no scientist, but this is what I’ve been able to fathom from the wealth of information out there.
To put it simply, it’s an autoimmune disease in which the immune system attacks the thyroid gland, slowly destroying it over time. For most people, this eventually means that they will develop Hypothyroidism, or an under-active thyroid as it’s more commonly known. Around 90% of people with Hypothyroidism have it as a result of Hashimoto’s Disease. At this point the thyroid gland is unable to produce hormones itself, so an individual has to take medication to replace them.
The thyroid gland affects every process in your body.
For a tiny gland in your neck, the thyroid gland does an awful lot. In fact, it’s responsible for every process in your body from metabolism and digestion to temperature and mood regulation. Therefore, if it’s underactive, all of the processes in your body slow down, leading to a multitude of problems.
There are over 300 symptoms of Hypothyroidism.
As the thyroid gland controls every system in the body, it’s no surprise that a faulty one can lead to an array of symptoms. For me personally the main ones have been: extreme fatigue; brain fog; memory issues; cold intolerance; dry skin; thinning eyebrows; long, heavy periods; vitamin deficiencies; insomnia; anxiety; OCD; low mood; muscle aches; lower back problems; digestion problems; dizziness; headaches and blood blisters in my mouth to name a few.
One of the worst things about this disease is that it’s completely isolating. Even the people I live with have no clue what I go through on a day-to-day basis. Unless I sat down and spoke to everyone I know for a good five hours (and frankly I don’t have the energy), they don’t have the slightest comprehension of what it means to have Hashimoto’s and why would they. It’s a disease that most people have never heard of. For this reason, I’ve wanted to write this for a long time so that people can begin to understand why I never respond to text messages; I never want to socialise in the evenings; I spend most of my time sitting whilst out with my daughter at the park; I can’t even think about having a second child; I’m reluctant to make future plans; I can’t progress in my career and my emotions fluctuate like the weather.
Here is just a snippet of what it’s like to live with Hashimoto’s Disease.
The fatigue is debilitating
First of all, let me say, I know what it feels like to be tired. I’ve had a child; I’ve woken in the night to feed. I’ve also had insomnia so badly that I’ve barely slept at all for whole fortnights at a time. Yes, these things all made me feel exhausted but fatigue is next-level exhaustion. Thyroid fatigue makes you feel like your whole body is being weighed down and everything is a massive effort. I have days when I struggle to move from the sofa and even the slightest activity leads to hours of recovery time. My whole body aches and feels sluggish and the irony is, these days I usually sleep well at night. As I have a three year old and a part time job, I don’t really have the option to stay in bed all day, but I often drag myself through the days wishing I was crying in bed and have very little capacity to deal with said child and job. Thankfully I don’t feel like this all of the time because when I do, it’s absolutely miserable.
The symptoms make you feel like a different person
Pre-Hashimoto’s and even now on a rare good day, I’m an active person with high levels of energy. I was always on the go; I never rested; I was able to run 10K; I could stay up until gone midnight and get up at six the next day. I studied for a masters whilst on maternity leave; I worked full time. These days I often struggle to get through each day. Even on a good day, I’d say my energy levels are 40% of that of a ‘normal’ person. I spend a large percentage of each day sitting or lying in the bath. Yes, I still work part-time and play netball, but these activities completely wipe me out. I feel like a shadow of my former self: the fun-loving extrovert who loved being around people and was always planning the next adventure/working towards the next goal. I’m not the mother, partner, friend, family member or teacher I want to be because this disease makes it impossible.
It affects your mental health too
Up until I was pregnant (and it seems pregnancy is what triggered my Hashimoto’s), I never suffered with anxiety. These days it’s my default. Anxiety absolutely destroyed the first two years of motherhood for me. I constantly struggled with insomnia and panic attacks and I’d have to spend hours completing CBT exercises at home before I’d even contemplate doing things like meeting a friend for lunch with my daughter. I did get help for this and these days I generally sleep ok (not that I feel well-rested), but my sleep-hygiene is so obsessive that even the slightest disruption in my routine means that I don’t sleep at all. I’m not a lot of fun to live with. As well as that, the fear of doing anything that will make me feel worse is so intense that it’s all I think about.
It’s a chronic illness
Like Coeliac Disease (one of the other autoimmune diseases I have), Hashimoto’s Disease is a chronic illness. I’ve got it for life – it’s not going to go away and will likely get worse as my thyroid gets more and more destroyed. Therefore, I have to find ways to live with it. Also, because it attacks the thyroid gland randomly, it’s not as though I’ll find the right dose of medication and be fine – it will constantly need tweaking. I’m not going to ‘get better’ once I ‘have answers’: I know what the problem is; there’s just not a simple solution.
Doctors and endocrinologists know very little about it
As far as doctors are concerned, if a patient has Hypothyroidism, they prescribe them Levothyroxine (which replicates the T4 hormone) and send them on their merry way. Unfortunately, as all thyroid patients know, it’s far more complex than that. Firstly, there are more like five hormones involved in thyroid function and even getting them to check the other hormone levels is a battle in itself. Doctors routinely assess thyroid function using TSH readings, which isn’t even a thyroid hormone – this marker can change throughout the day and is completely unreliable. The most important hormone responsible for thyroid function is T3 and getting doctors to test it is almost impossible: I had to write a strongly-worded letter of complaint to get my GP to test mine and it’s still an ordeal every two months when I have my blood tests. Even though I do get my T3 regularly tested, doctors and even endocrinologists have completely ignored the fact that mine is low. The idea is that T4 medication converts to T3 but for a lot of patients (especially those with gut-issues), this process just doesn’t work very well.
It’s unbelievable that doctors don’t even know basic things like the fact that as a thyroid patient it’s absolutely essential that your vitamin levels are optimal. I’ve been trying to increase my levels of ferritin for 18 months now. From being a mere two, after six months it plateaued at 32, so my doctor saw that as a sign that I didn’t need to take iron anymore, took me off of it and surprise surprise within weeks I was severely anaemic again. Shocking.
As much as I respect the NHS and everything they have done over the past year, personally I have been completely let down by them with regards to my thyroid. I was told in 2013 that I was ‘borderline’ Hypothyroid. At the time I accepted it when the doctor said I didn’t need medication, even though in retrospect it is obvious that my worsening Hashimoto’s was responsible for the hundred day periods I was having and hot flushes I was experiencing. My immune system was going wild and no one put the pieces together. If I’d been put on medication when I should have been, maybe my thyroid wouldn’t have been as damaged as it is now. It’s not the fault of individual doctors: they just don’t get the necessary training.
In addition to this, I’ve been complaining to doctors about IBS symptoms for a decade. At its worse I was doubled over in pain every afternoon but no one thought to check for Coeliac Disease, even though I’d been severely anaemic at university.
The fact that I have Coeliac Disease and my gut is shot to shit means that it’s much harder for me to get my vitamin levels to optimal and for my thyroid medication to work. Lots of people know that I have Coeliac Disease and follow my gluten free Instagram and think this is my main issue. It’s not. Being gluten free is easy and that’s the cure for Coeliac Disease. The reason I’m so focused on healing my gut it due to the impact it will have on my thyroid health.
Doctors don’t even care if you’ve got Hashimoto’s
I find it absolutely horrifying how little doctors and endocrinologists know about thyroid disease, especially as it is relatively common. The only reason I know I’ve got Hashimoto’s is because I paid for private testing and then forced my doctor to acknowledge it. My endocrinologist actually told me that the reason that there is insufficient research into thyroid disease is because it mainly affects women, so actually it’s a feminist issue. The fact that my Hypothyroidism is caused by Hashimoto’s is completely irrelevant as far as doctors are concerned. Despite this, there are plenty of people out there who have found relief by reducing their thyroid antibodies using various lifestyle interventions. With an autoimmune disease, looking at the root cause of issues is just as crucial as taking medication. The problem is, there’s so much advice out there and it’s so different for different people: it can quickly become overwhelming.
If you want to feel better, you have to pay
As the NHS is completely incompetent when it comes to Hashimoto’s Disease, I have literally spent thousands on trying to feel better. I’ve seen naturopaths, nutritionists and have even paid to send my poo and blood in the post to try and get answers and find relief for my symptoms. I take a ridiculous amount of supplements every day and change my diet fortnightly, yet nothing seems to make a difference.
Getting the right medication can seem impossible
Seemingly one thing that might make a difference is actually taking the right medication; one that actually replicates the hormones thyroid patients need. Unfortunately, the NHS won’t prescribe this medication. I’ve read stories about people having to source their medication from Thailand and spend hundreds of pounds on it in a desperate attempt to feel better. One person I spoke to had managed to find a private doctor who would prescribe her T3 medication but it was costing her £200 a month – not particularly sustainable if you also want to eat. Ironically, the medication that seems to be the most beneficial to thyroid patients, NDT, was routinely prescribed in the 1960s before it was replaced by Levothyroxine. Unlike Levo, which only replicates T4, NDT produces five thyroid hormones including the all-important T3. The fact that it is not prescribed by the NHS is absolutely baffling to me as thyroid patients all over the world are sourcing this and feeling much better.
It can flare up out of nowhere
For the first year of being on thyroid medication my symptoms seemed to fluctuate with my blood tests. I’d feel ok for a bit, start feeling shit again, have blood tests done, change my dose, and then feel a little better. Unfortunately, in the past six months this doesn’t seem to be the case. Now I’ll feel ok for a few weeks and then seemingly out of nowhere I’ll be floored for a month but my blood test results aren’t changing much (even though my T3 is consistently rubbish). It’s a massive head fuck and makes planning anything an absolute nightmare as I have no clue how I’ll feel from one day to the next. This then means that I’m anxious to plan anything as the last thing I want to be doing when my symptoms flare up is anything that involves moving from the sofa.
It can be triggered by anything
The good thing about the Internet is that there is a wealth of information and support at your fingertips. The worst thing about the Internet is that there is a wealth of information and support at your fingertips. I’ve probably spent a good two months of the past year and a half obsessively Googling and reading books in a desperate attempt to feel better. If I took on board everything I read about managing Hashimoto’s, aside from gluten, I’d also cut out dairy, soy, corn, sugar, caffeine and alcohol and I’d never use any products that contain any chemicals. To be fair, I’m pretty much doing all of this anyway and haven’t noticed any difference. ‘Flare ups’ can apparently be caused by anything from exercising too much to not exercising enough; coming into contact with mould; having a virus; over-exerting yourself; spending time with ‘toxic’ people and, most common of all, stress. Of course, the concern that stress could potentially cause a flare up means that I get stressed about being stressed! It’s all very anxiety-inducing, and, when I feel unwell, I worry about every single possible thing that might have caused it from playing netball to the little bit of soy in my dinner the previous night. For all I know, it just happens randomly and I have no control, which, for a control freak, is just not ok.
Let me finish by saying I know it could be a lot worse. I know people live with even more debilitating conditions, but that doesn’t make it any easier. My friends and family are very supportive and know that I have ‘health issues’ but really they don’t have a clue. People have their own stuff going on and, even the little bits I do say, goes over people’s heads because I’m unable to convey the extent to which this disease affects me every day. I don’t want to be a ‘mood-hoover’ and talk about my illness all of the time. Most of the time I just want to get on with my life and try and enjoy it in the best way I can. Sometimes, however, it all gets too much and I wish that people understood.
This is why I’ve written this, not just for my friends and family, but for anyone who knows someone struggling with Hashimoto’s. I’m hoping that reading this will give people some idea of the uphill struggle thyroid patients face when their energy levels are at zero.
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