Lessons from 10 Years of Hashimoto’s Hypothroidism I couldn't find happiness by following a FODMAP diet, testing myself for diabetes, or taking Magnesium and Vitamin E for adrenal support. It was both harder and easier than that. 14 minute read

It’s been 10 years since I was diagnosed with Hashimoto’s Hypothyroidism. 10 years of taking two little white pills every single day in an effort to regulate what my body can no longer.

Those 10 years have been filled with a full 10 years of life: finishing a masters degree, cycling around a country or two (or half a dozen), self-publishing a smattering of books, teaching English to refugees, writing and producing an hour-long play, turning that into a radio series or two.

But every day, throughout it all, I’ve been taking those two little white pills. There is nothing I’ve done more consistently, so I think it’s fair to say I have some experience in this field.

So wherever you find yourself on your hypothyroid adventure, I hope these words give you some encouragement, and perhaps you’ll share your experiences with me, either by email or in the comments below!

Introduction and Disclaimer

This 2,500 word post is split into two halves. In the first half I give a little background to the story: my own personal history of Hashimoto’s. The second, much longer part is a summary of the advice that I wish I could have given to my younger, newly diagnosed self.

I can’t stress enough that every body is different. Your experience will be different to mine, I promise. That is why I say that I’m writing to myself. Please don’t take my advice too much to heart. You must find your own way, just as I am finding mine.

That being said, I do think that we can learn from each other. I owe an unfathomable debt of gratitude to my many teachers along the way, including people with whom I have ultimately disagreed.

Ultimately, our treatment is only a small part of living with Hashimoto’s. Far more significant is what we choose to do with whatever life remains.

My History of Hashimoto’s

I remember what first pushed me to the doctor’s surgery in 2008. I was volunteering for a charity in London and one of my tasks was to compile advice for our fundraising marathon runners. I wanted to do something about my recent ‘laziness’ so decided I would take the same medicine I was prescribing to our charity runners.

I would run a marathon.

The first piece of advice you’ll read in any marathon training manual is: Before starting any intensive programme of exercise, please consult your doctor.

So I did.

She looked at me without much concern. ‘Is there anything that makes you think you couldn’t run a marathon?’

‘Well… there is this one thing.’ I proceeded to demonstrate how I couldn’t move my arms without them cramping. And how I couldn’t walk up a hill without getting breathless. And that I’d been sleeping about 12 hours a night. And that I wore a thick winter coat, indoors.

‘Would you like a blood test?’ she asked.

No one likes to be a drain on the National Health Service, so I replied in the negative. Then I paused. The year before I’d also turned down a blood test after a nasty bout of the flu. So I changed my mind. ‘It wouldn’t do any harm, would it?’

She phoned me a week later, saying that it was nothing to be concerned about just yet, but I should probably come in for another round of tests. She later told me I’d been three weeks shy of a coma.

My doctor started me on 25mcg of levothyroxine, and we gradually increased the dose by 25mcg every month until I hit 125mcg.

Those two little white pills were transformational. I was able to walk up hills. I was able to throw off my winter coat. I was able to stay up late and socialise. A friend started calling the levothyroxine my ‘charisma pills’.

With brief flirtations at both 100mcg and 150mcg, 125mcg has been my dose since that autumn of 2008. That doesn’t mean life has been steady. We’re trying to manually regulate a body system that usually calibrates itself. It’s never going to be perfect.

Help with Hashimoto’s

Like all people with a ‘condition’, I could fill a book with so-called advice. So first of all, let me say that what I’ve got is different to what you’ve got – all human bodies are different, even if we’ve got the same diagnosis – so feel free to ignore everything I write from this word onward.

Not knowing the details of your situation, I’m going to imagine that I’m writing a letter to my younger, newly-diagnosed self. With any luck, some of what I say to myself will be of use to you. If not, then at least this is sort of therapy for me!

Initial Adjustment

If you’re new to Hashimoto’s, then know that the adjustment phase is really important. Be gentle. If you don’t feel like your doctor is sympathetic or knowledgeable about thyroid issues, then change doctors. There are about 33,000 GPs in the UK and experience can vary enormously. You will find one that works for you.

Thyroxine stays in the bloodstream for about 2 weeks, so the adjustment and transformation can be dramatic. Don’t increase (or decrease) your dose too quickly – your body can’t handle it. I spent a month at each 25mcg increment (or even 12.5mcg) until I settled on what was right(ish) for me.

That (ish) is important. Supplementing will always be an inexact science and sometimes my body feels like it’s running hot, sometimes cold. Oh well. That’s the nature of the beast.

The Psychology of Diagnosis

A big part of dealing with the diagnosis is psychological. All of a sudden the daily aches and pains of life might be down to something being seriously wrong. What if I tweak my dose? What if I change my diet? What if there’s some blood test the NHS haven’t given me? And, magically, I’ve lost three months searching for cures to symptoms that are ineffable.

That’s not to downplay my symptoms or the way I feel, but it’s a warning that I can take these things too seriously. Often the best cure is to relax and forget about it. Literally forget all about the diagnosis. I’m lucky to be here at all, so use whatever it is that I’ve got. If I feel tired, I can do something that energises me: run, jump into the sea, phone a friend (and don’t talk about how tired I am).

Looking too closely, symptoms miraculously appear for me to find.

Having said that…

Blood Test Results

Blood tests results are one thing, how we feel is another. Don’t be afraid to disagree with the doctor and fight for what feels right. Be patient and tinker with your dose over the course of the next 6 months. Doctors try to get us into a ‘normal’ range. There’s no such thing, of course, so take what feels right. That can mean alternating doses – 75mcg one day, 50mcg another. You can cut tablets in half, or take more in winter. Whatever works.

Take the dose at the same time every day, if possible. But don’t stress if you miss a dose: nothing bad will happen. Some people find that taking it at night helps with energy levels. I found no difference so take mine in the morning, half an hour before breakfast and well before any caffeine intake. That’s what it says on the label, so no harm following that guidance.

This consistency applies to the timing of blood tests as well: same time, every time. The easiest body state to control is before breakfast, first thing in the morning.

Symptoms

Your symptoms will vary from the canonical list presented in the textbooks. Swelling, tinnitus and problems focusing are all common symptoms that I remember not too fondly.

Here are some symptoms pulled from my diary just before diagnosis:

  • I also feel the weakness in my muscles – increasingly.
  • The memory lapses become more common. I am lost for words constantly. To think that I put it down to learning a new language – no wonder I couldn’t remember the conjugation of kana! (I was learning Arabic at the time.)
  • Lethargy, hard to get going, a happiness just to sit and be passive instead of active – a love of long train journeys.
  • Mental acuity. Certainly noticed that in a big way whilst doing masters. Hard to concentrate and remember complexity of ideas and analysis.

But all of these symptoms disappeared within 6 months of treatment. I was diagnosed at the beginning of May 2008 and I was ‘normal’ by October. (That’s in inverted commas because we will never have normal homeostatic thyroid levels, just artificially managed thyroid levels. But that’s cool.)

My advice would be to treat yourself with the utmost respect and patience. Try not to fret over what is happening. By all means observe what’s going on, take a diary and record symptoms if you want – I found it helped me externalise the problems rather than bottling them all up inside with rumination. But trust that the treatment will gradually do its work – and it will work more quickly, the better care you show for yourself.

That means all the things that we usually neglect, like good sleep, (gentle) exercise, stretching, naps, good fresh food, conversation with friends, meditation, massage, saunas (when your heart rate is normalised), relaxing baths and removing sources of stress – that might be other people, don’t hang out with them.

Turn your body into a temple for 6 months, why not!

10 Tips for Living with Hashimoto’s

  1. Eat well, but don’t add to your stress by making your diet too restrictive. A meal with friends and family does more for your body and mind than excluding yourself by virtue of your diet.
  2. The more I eat something, the more I crave that something (microbiomes ftw). Every day that I eat well makes a healthy diet easier and more satisfying tomorrow.
  3. Eat nothing but fresh salads, picking one of everything from the greengrocer, for 6 months. Then see.
  4. Stop eating sugar completely for 3 months (including fruit). Since then I’ve been able to have sugar occasionally without becoming dependent.
  5. Prioritise 8-9 hours’ sleep a night. Prioritise means prioritise. Working late means you’re prioritising work; watching TV late means you’re prioritising watching TV; socialising late means you’re prioritising socialising. I’ve got nothing against work, TV or socialising, but they are not sleep. Prioritise sleep.
  6. Don’t misattribute emotions to the crazy shit your body is telling you. I’m not irritated, or angry, or tired, or depressed, or anxious: my body is just on some weird biological rollercoaster. It’s cool.
  7. Meditate and do yoga every day, each for 20 minutes if possible. Do press ups. Hypothyroidism is a secret superpower: use it to become stronger.
  8. Move. You’ll likely have all kinds of strange physical sensations: the best way of getting them out is to do something physical. Doesn’t have to be an Ironman Marathon. Climb a tree, stand up instead of sitting down, jump into a lake.
  9. This is all basic self-care, to be honest; stuff we should all be doing to feel good whatever the state of our thyroid. But if you don’t already have these habits, then change can feel hard.
  10. On the plus side: a medical crisis like this is the perfect stimulus to change. Whenever anyone challenges you, or you find yourself losing motivation, just say, ‘It’s because of my Condition. I have to do this, otherwise…’ They’ll back off.

This is my experience.

The Danger of Forums, Thyroid Doctors and Academic Articles

You are not alone. There are thousands living with Hashimoto’s in the UK and you can find many supportive and kind people on forums like these.

But remember that the closer you look into your diagnosis, prognosis, symptoms and solutions, the more you’ll apparently ‘uncover’. It’s possible (I’ve done it) to lose a lot of time (and indeed money) down this particular wormhole.

Last year, three months vanished in a windstorm of private blood tests, forum case-studies, and unpicking the advice of thyroid doctors. NDT, T3, Dr Sharma, Dr Peterfield, adrenal support – this is where my summer disappeared.

And what did I gain? Nothing. Except perhaps one thing: an insight into my own suffering.

What I Needed to Learn About Suffering

The following is my personal insight – your personality, condition and treatment are all different. I share the insight only because I want to warn you from losing too much of yourself in your diagnosis.

All that research, all those restricted diets, all those blood tests amounted to one thing: I was looking for an easy way out.

I was lured by the temptation that I could blame all my life problems on my thyroid, and that by taking a different kind of pill I would never again suffer from lethargy, tiredness, depression or anxiety.

There is no such panacea to be found at the bottom of internet forums and in the footnotes of scientific articles.

What Does Work

There is a very different kind of panacea that does work. I found it by accident, to be honest – not in diet books or the blog posts of thyroid doctors. I found it by turning my attention outwards, to the things that made me feel good.

Here are some things that I took up in 2017 because they simply made me feel good:

  • Regular saunas. 2x 20-25 minutes, 3 times a week. A time to read and relax by the pool. It’s not as expensive as it sounds: a lot of council leisure centres have saunas.
  • Ice showers and swimming in seas, lakes and rivers.
  • Regular running, including a couple of races that gave out medals. Love a medal.
  • Volunteering with a youth group, playing a lot of table tennis, and cooking together.
  • Yoga, meditation and breathwork.
  • Keeping track (literally, in a spreadsheet) of how often I see my friends, a habit that I find pushes me to contact them more often by phone or in person.
  • Ultimate Frisbee.
  • Eating loads and loads and loads of salad.

Obviously some of these things are only possible because my thyroid levels are under control and ‘normal’. Take care of yourself if you’re not quite at that level yet.

But the general point remains: none of these things are as simple as taking a different kind of pill every morning, but they are all a million times more rewarding.

Happiness with Hashimoto’s

Treatment is only a small part of living with Hashimoto’s. The majority part is what you actually do with whatever life remains.

I know how easy it is to slip into an inward spiral. It’s easy to worry about symptoms and possible symptoms, fret that maybe the doctors have missed something, that perhaps there’s some other treatment in France or the US that would magically turn everything around.

But, after many months of searching, I couldn’t find happiness by following a FODMAP diet, testing myself for diabetes, or taking Magnesium and Vitamin E for adrenal support.

It was both harder and easier than that. Reading and experimenting with obscure treatments absorbed a lot of time, money and effort. If I’d spent even half that on simply having fun with my friends, I think I would’ve had a much happier summer last year.

This is all to say that my advice would be to spend the next 6 months doing it the NHS way, slowly, slowly, with levothyroxine, and a whole lot of self-care and patience. Completely forget about all the other ‘what ifs’ – it’s a rabbit hole in a mine field – and turn your attention outward to the world.

Put a note in your diary for 6 months’ time to review how things are going, and fill the intervening period with things that make YOU feel GOOD (remembering that sometimes that includes actively removing stressful places and people from your life now).

If in doubt, follow the sage advice of Anthony Seldon: ‘Happiness is the opposite of selfishness.’

If you’ve got any questions, I’m here and in the comments below.

All the best – and thanks for the therapy!

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