Chronic Fatigue Syndrome: My long road to recovery and the outdated approach to diagnosis

Reading time: 5 minutes

By Joanna Kent

In April 2016 I moved from London to Berlin in pursuit of a change of scenery and a better quality of life. This isn’t an article about the trials and tribulations of becoming an official Berlin hipster. It’s about how my life changed when I developed unexpected and unexplained health issues.

Around September 2015 I started to experience extreme fatigue. It persisted for weeks, then stretched into months. You might be wondering how ‘extreme’ this fatigue was. Well the truth is, I had good days and bad days, even good weeks and bad weeks. At my worst I was unable to go to work and at my ‘best’ I was going in to work but behaving like a zombie in meetings, mumbling my way through conversations with colleagues. I would sometimes sneak off to the first-aid room just so I could lie down and rest because I was worried that I wouldn’t have the energy left in me at the end of the day to make my commute home. I was working as an in-house lawyer for a large fashion business at the time. My boss was extremely supportive about my condition although in my mind I felt I was going to lose my job if my health didn’t improve. No matter how much I slept at night, I woke up completely exhausted the next morning with blurry vision and aching muscles and joints. I wasn’t just sleepier than usual, I was physically unwell. When I reflect back on this period, I struggle to comprehend how I made it to work.

I was concerned and sought advice from a number of UK doctors, including an endocrinologist who had come highly recommended. This particular consultant looked at my recent blood test results and said that he didn’t think there was anything physically wrong with me. As a wildly unhelpful alternative he recommended that I seek medical treatment for depression at the Nightingale Clinic in London. Nice one. I was outraged by his ignorance and incompetence and if I’d had more energy I would have screamed down the phone to his secretary about what I thought of him.

I had always planned to move to Berlin, even months before the fatigue started. Around February 2016 I handed in my notice, feeling relieved that I wouldn’t have to go on pretending that I felt ok at work when that wasn’t the case. Of course, I had reservations about moving countries and changing career, but I’d also partially convinced myself that my fatigue was the result of many years of living and working in London and that perhaps being in Berlin, where the pace of living was slower, would restore and recalibrate me.

When I arrived in Berlin I was full of enthusiasm about my new surroundings. I had managed to save enough money so I could comfortably take six months off work. Unfortunately though, things didn’t go to plan. I was still exhausted, unable to work and vacillating between feeling somewhat tired and totally exhausted. My days would often begin with me assessing how much energy I had and how much I would need to use for the most simple of tasks, like hanging up the washing or making meals. I went to see a doctor in Berlin who also couldn’t find anything wrong with me. I was feeling exasperated and fearful about my quality of life. I wasn’t dying but I wasn’t living.

I remember talking to a doctor friend around August 2016 about my condition and he kept referring to “Chronic Fatigue Syndrome” or CFS. I’d been reluctant to label myself with this condition up until that point. I hated the fact that I might have something chronic; it sounded so ugly and permanent. It didn’t fit in with my life plans or my career goals. But that conversation shifted my mindset and I remember coming home thinking to myself that after a year of feeling exhausted, I needed to accept that I was suffering from this condition. CFS is defined by most medical experts as fatigue which persists for longer than 6 months and doesn’t go away with sleep. That was definitely me.

Feeling totally unsatisfied with the medical advice I’d received up until that point, I decided to take matters into my own hands. I searched online for a book on CFS and came across Dr Sarah Myhill’s book ‘Diagnosis and Treatment of Chronic Fatigue Syndrome’ which had been awarded the BMA Book Award. I ordered a copy and found myself making pages and pages of notes as I read through it. This book would later become a health bible of sorts to which I would regularly return. Much of what Dr Myhill had written resonated with me. In particular, she referenced goiters – lumps at the base of the neck, caused by swelling of the thyroid gland – being one symptom indicating hypothyroidism, or an underactive thyroid gland, a common cause of fatigue. I already knew I had goiters following an ultra-sound I’d had when I lived in London. However, all the doctors I’d seen told me these goiters were totally unconnected to my fatigue. I also read the following:

“Hypothyroidism is extremely common and very badly treated in [the UK]. Its effects are insidious in onset and often mistaken for ageing. It should be looked for in every patient with any unremitting symptom. Dr Kenneth Blanchard estimates that 20-50% of Western women are hypothyroid…Many of my patients come to me telling me that their thyroid gland has been checked and found to be normal. This just reflects how inadequate tests can be in picking up thyroid deficiency…”

I felt compelled to make an appointment with a new doctor in Berlin around September 2016. She looked at my blood test results and immediately identified that my TSH level – the hormone that controls thyroid gland activity and which is typically used as a marker of thyroid health- was outside of the normal range. She arranged for me to have another blood test which showed an even higher TSH number, indicating hypothyroidism. Within a week following that blood test, I learned that I was suffering from Hashimoto’s – a condition in which your immune system attacks your thyroid. I was told by this doctor that this was almost certainly the cause of my fatigue and I was prescribed thyroxine tablets. As my thyroid gland wasn’t producing thyroxine on its own, I needed to take these pills in order to return levels of T3 and T4 to normal. Within the first two weeks of taking thyroxine I felt significantly better. My GP advised that it could take a few months before I would feel completely better and by January 2017 I started to feel truly well again. It’s hard to do justice in writing to how I felt having my quality of life back. I was ecstatic, relieved and of course angry that I’d suffered unnecessarily for over a year.

The biggest question on my mind was why I’d been told my thyroid was functioning normally by so many doctors, when this wasn’t true. After doing some research I discovered that different countries work with different treatment guidelines for hypothyroidism; even within countries there are inconsistencies in treatment approaches, as I experienced in Berlin. My TSH level was comfortably within the ‘normal’ range according to most of the doctors I’d seen (particularly those in the UK), however it was outside of the normal range according to the most recent doctor who identified I had hypothyroidism. Dr Myhill writes about this in her book and it’s been written about to some degree online. I would encourage everyone to read it if they have the time. It’s also available online for free here: http://www.drmyhill.co.uk/wiki/Category:Fatigue

For some people, having CFS means not being able to leave their bed at all. I’m not for a moment suggesting that everyone with CFS has an underlying thyroid problem but I feel a responsibility to raise awareness of this issue and encourage people suffering with CFS to read up on it; at the very least so they can rule it out.

The silver lining for me was that during those shitty 18 months of suffering with CFS I learned a lot about general health (nutrition/toxins/sleep etc) and I feel empowered by what I’ve learned. It pains me knowing that for many CFS sufferers, the battle to recovery is ongoing and much more arduous than mine.

4 Replies to “Chronic Fatigue Syndrome: My long road to recovery and the outdated approach to diagnosis”

  1. That was very interesting, so sorry about that year of not knowing what was actually causing our fatigue.

    I can totally identify with you, have spent years and years trying to get to the bottom of a health problem I have with my feet. It is like I am just imagining these symptoms.

    Wishing you continued good health!

    xx

  2. Wow jo, it sounds tough and didn’t really appreciate the extent. Very glad you’re better and great that you’ve put this down to create awareness! Hope to see you lovely guys soon!

    Alex

  3. Hi,
    Is there any chance you’d share with me the doctor you saw who diagnosed your Hashimotos? I’m in a very similar position to you and looking for a Dr in Berlin.
    I’d be very grateful for your help!
    Thank you
    Alice

    1. Hi Alice, the doctor I saw was Dr Ludwig on Ansabacher Strasse 45 10777 Berlin. I’d also recommend reading through the relevant sections of Dr Myhill’s website: http://www.drmyhill.co.uk/
      In particular she recommends: “We should amend the threshold for prescribing thyroid hormones to 3.0mlU/L or better still 2.5mlU/l.”

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