Is it just exhaustion, or is it Hashimoto’s Thyroiditis? An estimated 10% of women in New Zealand are suffering from the autoimmune illness which causes symptoms like unrelenting fatigue, unexplained weight gain, sensitivity to the cold, hair loss, joint stiffness, brain fog, dry skin, constipation and muscle aches. So, why are most women just being brushed off when they go to the doctor?
As a thirty or forty-something female, it’s become all too easy to believe that it’s completely normal to feel bone tired, all of the time.
Sometimes it seems as though everyone in my age group is feeling worn-out, run-down and not sleeping well. We all like the constant Instagram memes about needing coffee to survive and complain to each other about our various aches and pains, and the depths of our exhaustion. In the last couple of years it’d be easy to chalk it up as being perimenopause – which seems to be everywhere all of a sudden.
Years ago, I actually got to the point where I thought it was so perfectly normal to feel exhausted and had resigned myself to the fact that, well, perhaps everyone just feels a bit tired all the time and maybe I just wasn’t as robust at dealing with it.
Turns out, that wasn’t the case. I was only in my early thirties and so feeling perpetually tired, as I came to learn, wasn’t at all normal. Actually, I was chronically unwell, and unfortunately, I’m certainly not alone.
Eleven years ago, after nearly a whole year of feeling like my body was falling apart, I was diagnosed with an Autoimmune disease called Hashimoto’s Thyroiditis.
Recently I’ve been shocked to discover that around 10% of the female population suffers from it.
So What Exactly is This Hashimoto’s Business?
I caught up with Dr Sharon Walt – alsno known as The Hashimoto Health Coach – who says a lot of her clients have trouble getting an initial diagnosis from their GP because the symptoms of Hashimoto’s are actually so diverse.
“But chronic fatigue is one of the first, big ones,” she says.
“Then there’s weight gain that’s really hard to shake, hair loss, muscle aches and pains. Constipation is another one, and then, of course, you can start developing depression and anxiety. That’s the reason why so many women, when they go to their doctor with symptoms, that’s the first and only thing they see. So their doctor then says, ‘Let’s put you on some anxiety medication!’ instead of discovering and treating the true cause of the problem.”
Essentially, Hashimoto’s is an Autoimmune Disease, which means your immune system attacks healthy cells – in this case the small gland at the base of your neck, the thyroid. The thyroid is part of your endocrine system, which produces hormones that coordinate many of your bodily functions. This inflammation means your thyroid can’t do its job properly, so you have an under-active gland, which is known as hypothyroidism.
For me, it started with what felt like a never-ending cycle of colds and sinus infections – I’d seem to get off one lot of antibiotics before needing to head back to my doctor with a new bout. All the while, I was working hard and was under a fair amount of stress – the magazine I worked for had been sold to another company and half of my workmates and friends had lost their jobs.
There were massive cuts and I was struggling with whether I really wanted to be there (and stick with the insane weekly deadlines). I’d swing from having insomnia, tossing and turning all nights, to weeks where I’d sleep 10 hours every night and still wake up exhausted.
In my personal life, I’d had a major break-up a while earlier which had left me with a surprise pit of debt to crawl out of (and the associated anger that goes with paying off debt that you didn’t incur). I felt cold all the time and would never leave home without a decent jumper, even in summer. I fell out with one of my oldest friends. Every time I washed my hair, I’d lose handfuls of hair. One night a pipe burst in my dingy Kingsland flat and the ceiling in my room caved in and suddenly I had to quickly hunt for a new place to live.
Then, it seemed, the final straw. I’d found a new apartment, moved in, then had to make a sudden trip to the States to help a sick family member. I was helping out when I picked up a heavy box and thought I’d twinged my back because suddenly my left leg and arm got pins and needles. I got it checked out, wondering if I’d pulled something in my back, but I got the all clear. Over the next couple of weeks it went away, but a month or so later I woke up and the entire left side of my body was completely numb. It went from numb, to pins and needles, to aching and back to numb again. Then the sensation moved to my face. I wondered if I was having a stroke.
I saw three doctors, two neurologists, a neurosurgeon, a chiropractor, a physio and an acupuncturist and no one was really too sure of the cause – but still the numbness and sensations continued. I was getting an Uber to and from work every day because I couldn’t face the 700m walk. But still, I was gradually losing more and more weight. Six months later I weighed only 53kg (I’m 5’9”).
I googled all my symptoms, often, and the next time I saw my GP I asked her if it was possible I might have Hashimoto’s. She gave me a little smile and said softly, “no chance dear, you’d have the exact opposite problem with your weight if you had Hashimoto’s. You have a stressful job and perhaps just need to manage that stress.”
The next time I needed to go back to the doctor – which was only about six weeks later – she was away and I saw her locum doctor. I told him about how constantly I was getting sick – how I was constantly cold and tired, and about my hair falling out. He left the room and came back with pamphlets about depression. I burst into tears – mainly tears of frustration – but for him, just further proof that I was dealing with depression, not an autoimmune disease that was making me feel utterly exhausted.
Maybe this was just normal, I started thinking. My job was pretty stressful and maybe I just wasn’t as good at keeping up with everything I had on my plate as other people appeared to be. Maybe everyone was secretly as exhausted as me?
Thankfully, one Saturday night I decided that I’d still go to a friend’s housewarming for an hour or two to feel like a human who did other things besides just working and sleeping. There, I met two of her friends who were raving about a holistic doctor who was treating one of them for Chronic Fatigue Syndrome.
I had no idea what a holistic doctor even was, but I got her number and two weeks later I was sitting in her office for an hour, telling her about my health as she prodded around in my neck. She sent me for a blood test which included a TGAb – a test that measures thyroglobulin antibodies levels.
To be diagnosed with Hashi’s, you have to have more than 20 IU/ml floating around. My results came back – as the doctor expected they might – at 1300 IU/ml, which is where the test actually cuts off. My labs were literally off the chart.
She told me she was sorry to tell me about diagnosis, but I could start on medication to even out my thyroid levels straight away. But – strangely – I was elated. I wasn’t just a bit weak and pathetic – there was something going on! Maybe something I could fix!
Dr Sharon Walt says my story is, unfortunately, very common.
When Sharon decided to change course in her career (she has a PhD in Applied Health Science) her intention was to specialise in helping people with stress issues. “But then I kept running into all of these women that actually had Hashimoto’s,” she says. “And they’re also so frustrated – to the point of being distraught – because there weren’t any answers for them.”
Getting Answers
Getting a diagnosis generally takes a year – if you’re lucky. And if you do manage to get a diagnosis, Sharon says, you’ll most often just be handed over a script for medication, like Synthroid or Thyroxin, which doesn’t address any of the root causes of your symptoms – it simply papers over them.
“Meanwhile, everything continues to simmer under the surface,” she says. “And one of the other things that doctors don’t mention, is that if you’ve got one autoimmune condition, and you don’t address it, you have a 30% chance of developing another autoimmune condition. Can you imagine? You already have Hashimoto’s, then you get something like Lupus to contend with as well.”
Dr Libby says one of the other difficult parts of getting a diagnosis now, could be that many people are now writing off symptoms as being perimenopause. She says it’s so wonderful that we’ve begun talking about perimenopause so much more now – but, that also has its disadvantages too.
“The worry for me,” says Dr Libby, “Is that if you’re aged between about 38 and 55 and you experience something new – maybe it’s sore feet, aching calves, headaches, anything new, really – I’ve seen there is this tendency right now to attribute anything new you experience to being perimenopause. Essentially, all these women are attributing the thing they’re experiencing to being a change in hormones. And, it might be that – but it also might not be that.”
In her book Fix Iron First she explains that both an iron deficiency or an underactive thyroid can often have very similar symptoms to perimenopause. “In the book there’s a whole double page where I compare the symptoms of iron deficiency to the symptoms of an underactive thyroid to the symptoms being attributed to perimenopause,” she says. “And there’s a huge amount of overlap! Testing is the only way to know what it really is for an individual.”
While there’s still a huge amount we don’t know about autoimmune diseases, it’s widely believed that there are a few things that need to happen in order for you to develop one.
“There are three necessary conditions that you need to have before you develop an autoimmune reaction,” says Sharon. “One of them is genetic disposition – although, what we’re finding now with genetics is that it’s not really 100% predetermined, so it’s not set in stone that you’ll develop it, but that can be switched on or off depending on lifestyle factors – the food we eat, our stress levels etc.”
She says the second condition is having gut lining permeability. “Your gut lining is semi-permeable to allow nutrients to go through, but to keep out all the pathogens from your bloodstream – that’s a vital part of your immune system, right there. So, if it’s more permeable than it should be, you’re allowing more things to trigger your immune system.”
The third is a more global element called environmental triggers. “That’s anything from stress, too much antibiotic use, through to chemicals, toxins, heavy metals etc.”
That’s why, when Sharon works with her clients she looks at working out what might be aggravating the condition and removing as many of those potential triggers as possible.
“The first step is always to take a look at what toxins we can eliminate and see how your body recovers. But that can also be a really hard thing to do because it often means changing your lifestyle and changing your diet – one of the first things I tell anyone who has an autoimmune condition is that they have to give up gluten.”
Sharon helps her clients to slowly remove those triggers and detoxify their bodies – but not in the way we normally view a detox: there are no weekend juice cleanses or fasts under her programs.
“If you have an underlying medical condition one of those detoxes can be actually quite dangerous,” she warns. “You can end up releasing a huge toxic load in the bloodstream of a body that is already having trouble coping. That’s why, when I work with people who have just recently been diagnosed, we spend a week just getting rid of gluten, then we look at dairy, maybe getting rid of all the types of sugar, slowly looking at stress levels, individual food sensitivities and hone in as to what is going on. I get people to keep a journal too so we can really get to the bottom of it.”
While Sharon has now worked with a huge number of Hashimoto’s patients, she also has some personal experience in understanding what it can be like to have a malfunctioning thyroid.
Years ago she was working at a university and was in a very stressful position when she started noticing symptoms that her doctor was also piecing together. “I was gaining weight, I wasn’t sleeping and had a lot of anxiety,” she tells. So she made use of the services available at her work and say a counsellor.
“They said, ‘Well, I think you should be on medication’. I wasn’t really keen on that, so I saw another counsellor and they said the same thing. So then I was getting worried, thinking, ‘Well, jeez, maybe I really do need to be on medication.’” She talked to her GP who agreed it was worth trying, but wanted to monitor her every two months.
“And it was fine. I didn’t have any anxiety anymore. But I also wasn’t feeling anything at all – I was a zombie. I realised at one point that I hadn’t actually laughed out loud in a year. But that wasn’t even the scariest part – suddenly I started having this very deep fatigue, where I would sleep 18 – 20 hours a day. My hair was falling out and I continued to put on weight.”
She went back to her doctor, and sure enough, she was hypothyroid – plus, her cortisol levels (the stress chemicals) were through the roof. Her hypothyroidism had been caused by stress.
“That’s when I realised that anxiety medication wasn’t the answer – I needed to get rid of the stress load to improve my health, and so I left my job. It took six months to come off the medication, but my stress levels came down, I dropped the weight and my hair grew back.”
The whole experience was also a lightbulb moment, in that she could now see a new career path ahead of her. “The whole medical system is set up just to treat symptoms, rather than getting to the root cause. Someone said to me, ‘have you ever thought about being a health coach?’ and that light went on.”
It wasn’t a huge shift for Sharon, who already had a health related PhD, but it did mean two more years of study into physiology and biochemistry – which she loved.
Now, she’s bridging the gap between the medical system, and taking a holistic approach to treatment of Hashimoto’s.
“I have the upmost respect for GPs, because they’re incredibly busy – but they also can’t keep up with all the research that is being done, it’d be impossible to stay on top of it all. I love figuring out how to help people. My original training was as a systems engineer – when I was doing my Masters I took a biophysics course and it was fascinating – it was using all these equations that we use in engineering, but instead applying them to the human body. That’s when I switched and did my PhD in health sciences, because I love working out how things fit together in the human body – and when something goes wrong, it’s like solving a mystery.”
Now Sharon hopes to help more Kiwi women – and men – to recover from Hashimoto’s, which she says is entirely possible. “The problem is this concept that the body is broken – well, unless you’ve got substantial, irreversible tissue damage, your body is not broken. It’s doing its job, given the environment that you have provided for it. That’s freeing in a way, knowing that healing is possible. But the responsibility is on us to change that environment and make sure that our bodies are thriving.”
What Helped For Me
If you’re battling with a new Hashimoto’s diagnosis, you’ll likely be looking for some quick smart answers and solutions. And i wish I could give these to you, but it does seem that every single one of us has a slightly different experience with Hashimoto’s and what works for one person isn’t guaranteed to work for someone else.
But, when I was diagnosed I reached out to anyone who knew someone who knew of someone with Hashi’s – turns out it wasn’t that hard to soon have a network of women – and asked for advice. The thing that helped most was that every one of these women told me, it does get better. You will feel better. Maybe not quite 100%, but you won’t feel like this forever.
To me, that was really helpful – because I felt like I was never going to be okay. Hearing that gave me the hope I needed.
From there, for me lifestyle changes really helped. Medication did help, but I find it’s actually a cocktail of a few things that keep me well.
At the start I gave up gluten, dairy, soy, coffee, eggs and alcohol, but have slowly reintroduced things. Gluten, I still stay away from – I find it inflames things, and I only very rarely eat dairy. I limit my alcohol, but otherwise I have no other food triggers. I know this differs from person to person though.
Reducing stress is massive – I know to listen to my body now and take a pause when I need. In those early days I found infrared saunas a game changer – they massively improved the neuropathy I was experiencing (that’s the official name for the numbness/tingling).
I also stay on top of supplements. My iron levels have always been on the low side – which, as Dr Libby has explained is hugely important for our general health and energy levels, but also for healthy thyroid function. Likewise, zinc is a biggie – it’s important for immune health, but your thyroid also needs a good supply of it. I take a zinc and iron supplement – but I also end up needing a iron infusion every couple of years.
The biggest jump in my improvement – weirdly – happened when I got pregnant with my son. This is apparently quite common – your immune system behaves quite differently during pregnancy which can have an effect on autoimmune diseases. Luckily for me, it seemed my immune system halted up on it’s attack against my thyroid. For the first time since I’d been diagnosed, my TGAb test came back with my antibodies inside the range that was measurable. I got down to 347. Unfortunately I ended up with Postpartum Thyroiditis (a different kind of thyroid hell), but once that calmed down, my Hashimoto’s has been much less of an issue.
Sometimes, when I was really ill, I wondered how the heck I’d ever have the energy to be a mum – it turned out, it hasn’t been an issue for me at all and pregnancy ended up greatly improving my symptoms.
The final thing I’d say about Hashimoto’s is – if you’re feeling really rundown and tired, what you’re feeling is real. I’ve spoken to so many women over the years about Hashimoto’s and other invisible illnesses and the one thing everyone seems to talk about, is the doubt that crept into their minds before they were diagnosed. Was this real? Was it perhaps all in our heads after all? Were we ‘just a bit stressed’ or worse, maybe just a bit weak?
If your doctor shrugs it off when you explain your symptoms – keep persisting. If that means getting a new doctor, do it! The sooner you’re able to get onto medication, the better. You’re not alone and you will feel better!
+For any concerns about your health, please, always consult your GP or medical professional.
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