A post about Hashimoto's disease #1
The best consolations and wisdoms I've collated over 15 years. Pass it around!
Something is in the air, the water, perhaps in the felt geo-political collective pain that is surfacing a lot of thyroid diagnoses, specifically Hashimoto’s (also called hypoactive autoimmune thyroid disease; pick your preferred ridiculous name).
And so I feel compelled to share what a poor soul with such a condition might need to know as they start out or live out this next stage of their existence.
Up front I’m going to ask you to post additional questions and to supply your input in the comments. I’ve always found this disease to be one that benefits from - and invites - a lot of community discussion.
Also, please do share this free post with anyone you know wrestling with this ludicrously exotic-sounding condition. Or with a practitioner - GP, endocrinologist, naturopath, nutritionist etc - who has helped you with the disease and who might like to take the opportunity to promote their appropriate services here. You’ll see why this is helpful for everyone in a moment.
Because there is so much content, I will divide the information over two posts.
This first post covers symptoms, plus the philosophical mindsets I apply to it all.
The second, which I’ll run as a bonus paid community post next week, shares wellness hacks, what I eat, how I exercise etc.
What I’ll not be doing is providing fixes or medical answers. Because a) I’m not a medical practitioner and b) this challenging disease defies such neat things. But, as I’ll explain, herein lies the beauty of this particular beast.
A few things first:
I have Hashimoto’s, which is an auto-immune disease of the thyroid gland. I have had a particularly gnarly case of it for 15 years. When I was 21 I had Graves disease (hyperactive thyroid). A got it again at 28 (it went into one of my eyes). I also had glandular fever (Epstein Barr) when I was 11. If you’ve had one, you’re likely to have/have had another (particularly Epstein Barr, see below).
I cover off a lot of material about Hashimoto’s, but most of it applies equally to other autoimmune (AI) diseases.
If you don’t have Hashimoto’s or an other auto-immune disease, you’ll still find this post interesting and helpful. IMO, AI sufferers are the proverbial canaries down the mineshaft. Our symptoms signal what our lifestyles and cultural conditions are doing to all of us, a reflection of the over-toxic, hyper-adrenal, sugary, sleep-deprived, anxious, dissonant lives we’re living. In my experience, AI disease sufferers tend to have particularly sensitive systems – for a whole range of reasons (hereditary, trauma-related) – and so we tip over the edge more easily. The rest of the world should see us as nifty warning beacons and heed our lifestyle approaches!
I will not be sharing medical advice. I will be simply sharing insights that might help steer your own journey with your body and medical team.
Relatedly, you need to know this, and I’ll repeat it a few times: This is a condition that is not fully understood by medicine/science. The science is lacking or incomplete. Frustrating, but good to know up front. It does mean you will probably have to listen to your body and remain open to both conventional and alternative view points. For this reason, this post will be helpful no matter where you live, and no matter what health system you’re in.
Also – and this is the blessing – in the searching for your own answers, you come to learn a lot of really important stuff about yourself, that - possibly - you’ve wanted to find out for a long time. More on this below.
I'll run this jig as a bunch of commonly asked questions, coupled with my takes.
What’s this autoimmune caper about?
Autoimmune disease is a condition that sees the body attack its own cells, resulting in a colourful array of bodily diseases, including Crohns and rheumatoid arthritis. It’s said to be among the top ten causes of death for women under 65.
I first got the condition at 21 in the form of Graves disease (a hyperactive thyroid). Thirteen years later (at the end of 2007) it switched to Hashimoto’s (an underactive thyroid). It can often swing from hyper to hypo like this (although not always). I see my Hashimoto’s riddled thyroid as being a bit like a star that burns too brightly and eventually implodes.
Where does Hashi’s come from?
Ah, this is where the contention and consternation starts…
No one knows.
One theory that held for a long time was that it relates to a gluten intolerance. Out antibodies confuse gluten and thyroid cells (they apparently have a similar structure) and, in a confused frenzy, attack the thyroid gland.
A more recent theory suggests it all begins with Epstein Barr virus (and, indeed, there is a strong correlation between instances of two diseases). After someone has had EBV, the virus goes and hangs out in the thyroid gland, dormant. A trauma or illness, sometimes decades later, however, will reactive the virus, causing antibodies to come attack it and the thyroid gland.
There is also a genetic predisposition element.
I long ago gave up trying to work out why and where from, although the genetic predisposition theory potentially holds for me (my grandmother and uncle had it) and so does the EBV theory. My gut says it was triggered by a very traumatic period in my mid-30s. I’m guessing all three factors conspired.
What are the symptoms of Hashimoto’s?
Almost everything ever.
It’s worth remembering that every cell in our body has thyroid receptors (the only other substance with receptors on every cell is Vitamin D).
A dodgy thyroid can manifest in so many different ways; it’s an illness of the entire body.
It also explains why Hashimoto’s is so often misdiagnosed as 93847 other conditions and why so many Hashi sufferers finally arrive at the correct diagnosis exhausted from trying all kinds of different supplements and treatments for 93847 other conditions. Plus it explains why we can be left feeling like a crazy hypochondriac. Right?
Years, back Hypothyroidmom.com shared a list of 300 symptoms, as a starting point. They include:
Chronic fatigue, insomnia, head fog, anxiety and depression
Constipation
Weight gain, heightened appetite
Always cold, night sweats
Swelling and thickened skin eg feet, lips, hands
Sore throat…lots of mouth and throat issues
Oversensitive hearing and smell, vertigo
Dry eyes, lots of sore eye stuff
Hair loss, premature gray hair, brittle nails
Joint pain, carpal tunnel, painful soles of feet
Difficulty breathing, heart palpitations
The list goes on and on. I suffer from most of the above. I’ll also draw your attention to how contradictory the symptoms can be… eg always cold and night sweats. Some advice to this end:
Give up on any of it making sense or being consistent. This will help you in the long run.
Did I get fat? Did I lose my hair etc?
Sure did. To be sure, Hashimoto’s is not a kind disease to the female ego. After an initial adrenal stripping that saw me drop 5kg, I then put on 17kg in three months. Which was a head-f*ck given I’d been working in magazines and not long after the diagnosis I was plonked on national TV hosting the most-watched program in Australian history. Thankfully it was a show about food. And my co-hosts were particularly chubby (relative optics)!
I lost all added 12 kg, but it took several years. Quitting sugar was the main tool for this (see the follow up post). As many of you here know, my AI disease was the reason I first tried quitting sugar; it was one of many paths trodden on my journey.
Six months after my diagnosis, but before I got treated, I got to a point where I couldn’t walk. I’d stand and fall over. Oh, yes, and I got depressed.
I also lost all my female hormones and my periods stopped for about a year, which caused a bunch of other issues (brittle bones and, oooooh, mood fluctuations). I went through premature menopause and was told I’d never have kids. I reversed this prognosis, again via quitting sugar, plus meditation (I write about his in my books).
And now, what does it look like?
Today, I have much milder versions of the above. But everything will flare when I overdo things or don’t get enough sleep. It’s a fun Catch 22 of the condition: Hashi’s sufferers need a lot of sleep (in part to allow the inflammation and autoimmune attack damage to be repaired each day) and yet one of its side effects is… insomnia.
Inflammation is probably the most challenging symptom. On “thyroidy” days, my right side swells up and tingles. My lips feel like they’re burning. And the brain fog is profound.
I would say I live with the inflammatory symptoms (swelling, burning sensations and brain fog etc) 2-3 days out of seven. When I was in Australia, it was 5-6 days per week.
What are flares?
The nature of AI is to attack in cycles, to ‘flare’. It’s not linear whereby you get sick, you get worse, then you get better. Done. Nope, it goes in ebbs and flows and flares.
My weirdest symptom?
I lost the outer third of my eyebrows (weird, but very common). I had had to pencil them in daily for years. Recently I got feathering down (a gentle tattooing technique that fills in gaps) and it’s a game-changer.
Second weirdest?
An unbearable swollen and burning sensation that exists almostly exclusively on my right side. From many conversations with people with the same condition, I observe that the right side seems to be a thyroid thing.
Can it be fixed?
Nope. But it can be managed to varying degrees, in part with thyroid medication, see below.
When I look at the sheer number of symptoms linked to Hashimoto’s, I’m reminded of just how fruitless it is to try fix symptoms (which would take several lifetimes even if such fixes existed) and that focusing on broad healing is far more productive. This is what I do now. I steer my efforts to modulating my stress, sleep, general health etc. This is the only “fix”. Again, see the Part 2 to this post.
Got a theory about the how and why of Hashis?
Yup. It’s a theory only.
Hashimoto’s tends to strike A-types who push themselves too hard and who probably wouldn’t stop unless made to. And, so, you could view it as a perfect disease for such folk.
I know with all my heart I got AI because I needed to. Yes! I was burn out and over myself. But I couldn’t stop (drinking coffee, knocking back half a bottle of wine each night, working 15-hour days, persisting in the nastiest breakup in Christendom, not sleeping, striving and climbing higher because I didn’t think I was enough on my own…). It was a habit I was scared to break. I really wanted to live a different way. But I was worried that if I slowed down, everything would unravel.
So I was forced to.
My body ground to a halt so I couldn’t go any further until I’d woken up. It collapsed in a heap, effectively saying to me, “Well, if you won’t stop, I will. And I’ll collapse right here, in the middle of everything and prevent you from going any further down this path until you get a grip of yourself”.
The lifestyle changes I’ve had to make have changed my life.
For a more woo-woo theory, check out this one that Louise Hay shared with me many years ago over a buffet breakfast of prunes and bacon.
How does it affect my work?
I read an essay by Meghan O’Rourke, What’s Wrong With Me, in the New Yorker not long after I first got sick. I remember she shared that “work is OK. The rest is hard.” It’s totally the same for me.
Of all the commitments in my life, working is the only one I can deal with when my thyroid flares. But only if I can not work around other people. Other people are the hardest when my thyroid is bad (ergo, I reconfigured my career to work in a silo for most of the time).
What about when I have to do presentations or meetings? Adrenalin will kick in and dull AI symptoms. And I get through. Adrenalin trumps AI symptoms, but longterm this equation is a recipe for disaster as adrenalin acerbates AI.
Doesn’t the pain and brain fog make it hard? Wouldn’t resting with family be better? Oddly, the pain can actually work to shut out distractions and force me into the present. I’ve written before how this before. This non-negotiable existing in the present then trumps the fog. A circular win-win.
BTW: I recommend reading O’Rourke’s essay. She also describes this: You feel distant from yourself…”not synched”. She adds,
“To be sick in this way is to have the unpleasant sensation that you are impersonating yourself… When you’re sick the act of living is more act than living…Healthy people, as you’re painfully aware, have the luxury of forgetting that our existence depends on a cascade of precise cellular interactions. Not you.
She also flags: The fatigue is unique. AI fatigue is different from a sleep-deprived person’s exhaustion. For me, it feels like a completely “alert vagueness”. Like you’re propped up on caffeine after 48 hours of no sleep. Ratty. Distant but hyperaware.
What is the first step if you think you might have it?
You get a blood test to see where your TSH (thyroid stimulating hormone) levels are at. GPs organise this test for you. Now, if the results are fine, you might want to request they do a full thyroid panel test, including thyroid antibodies and rT3 testing. If the results are bad, you’d ask the same.
!! So ask for the full thyroid panel test from the outset.
From here you might be given a small and cheap to buy pill called Thyroxin. And then to get regular blood tests to monitor your levels until you stabilise with the right dosage. Much trial and error ensues…
A few things to be aware of from here
Which is not a question…but I suddenly got sick of formatting things as such.
Some GPs and endos will be reluctant to do run full thyroid panels…be prepared for this and ask again. Or start with an integrative or open-minded GP from the outset, see below.
If your bloods are bad, most GPs will tell you to then book into see an endocrinologist. Now, look, you probably have to do this to just tick off boxes. But I’m going to say it bluntly: I saw three endos in my time and, like many fellow Hashi’s sufferers, I found that their care didn’t extend much further beyond prescribing Thyroxin (which most GPs can do). One prominent endo at The Prince of Wales hospital in Sydney once said to me, after listening to me query a few things, that endos have a pill they can give out that is meant to abate the symptoms, so they don’t bother to look at what’s causing the lack of hormones in the first place nor explore other salves, modulating techniques or life-enhancing practices that could work. Which, yes, is a bit f*cked.
There is contention about what constitutes a “fine” or healthy reading. Most GPs and endocrinologists will work to healthy or normal TSH levels being between 0.4-4.0 mIU/L. But there’s a lot of discussion on this topic and alternative or integrative practitioners will argue anything over 2.5 is problematic, primarily because the ranges are determined using the blood tests of unhealthy people, just be virtue of the fact unhealthy people get blood tests.
There is also much debate about whether it’s better to take straight Thyroxin or a version that breaks down T4 into T3. The former is produced by the big pharmaceutical companies. Ergo, you’ll find most doctors and endos will push this course. The latter you have to get made up by a compound chemist and a lot of doctors remain skeptical about its worth. The inclusion of T3 in the compound version is because not all people with hypothyroidism can convert T4 effectively to T3 (which you need for thryoid balance), largely because when you’re so adrenally exhausted and your immune system is under pressure you just can’t.
Me, I take straight, commercially produced Thyroxin. It works fine for me. I do have to adjust my dosage regularly…this is common for many sufferers (again, nothing remains consistent or conclusive with this ailment).
The conventional medical practitioners (most GPs and endocrinologist, but not all) and the naturopaths and herbalists disagree on a hell of a lot when it comes to Hashimotos. Be warned.
Thyroid drugs can make you worse. And sometimes taking less will help. Sometimes not. I am constantly adjusting my thyroxin; after 15 years of this hell, I know when I need to (my body tells me).
Your thyroid hormones can be whacked, but your antibodies normal. And vice versa. I get blood tests every 3-6 months and have done for 15 years. And have to make adjustments constantly to lifestyle practices.
So what to make of so many caveats and contradictions?
Take it as given that it will be your job to coordinate the motley crue of practitioners and their conflicting wisdoms to develop a routine that is best for you. Annoying. But true. I’d really recommend taking notes and keeping a wellness diary. I didn’t, but wish I had.
How did you find good doctors and practitioners?
I got my diagnosis before the internet really enabled helpful search functionality. So I mostly had to go via word of mouth. I suggest you do the same, in the main (given all the contradictory and problematic guff I flag above).
Start with either an openminded GP who can direct you to good naturopaths and dieticians etc. Or do it the other way around. You want the two parties to get on - left hand talking to right.
In Australia, you might want to scroll the list of practitioners certified by the Australasian Integrative Medicine Association (AIMA).
But I’ll add this:
Finding help for Hashimotos takes five years. And an average of five doctors, according to the American Autoimmune Related Disease Association.
A final consoling wisdom?
It’s not so much consoling as, well, helpfully realistic. I once came across someone who was told by their doctor, after years of back and forth trying to find a fix, “This may just be how it’s going to be. You may always feel like you’re eighty per cent.”
I’ll repeat this harsh wisdom:
You may always feel like you’re 80 per cent.
When I heard this I felt both a sadness and grief (for my former robust self). And a simultaneous relief. Knowing there is no fix to be uncovered gives me a leave pass from trying and reaching so hard.
I realise I have a choice. I can keep being the frustrated, forever reaching “sick” person. Or I can get cool with 80 per cent and embrace a new normal. All that energy I once put into finding answers, reaching and fixing I can now put into maximising the remaining years of my life - saying “yes”, going to my edge and so on.
There is obviously a lot more I can share…but this is a starting point and I’ll share how I modulate and “maximise” things in the next post. I’ll cover off how to drink coffee with an AI, whether gluten is a no-go, how I exercise, how I manage flares, etc.
As I said above, it would be super helpful if any of you have GPs, endos, naturopaths etc that you recommend, to post their names below (and perhaps send this post to them to get them to chime in on any debate or questions). We might as well turn this into a bit of resource for people.
Much 80 per cent wellness to you all,
Sarah xx
I could not agree more with these words: 'Our symptoms signal what our lifestyles and cultural conditions are doing to all of us, a reflection of the over-toxic, hyper-adrenal, sugary, sleep-deprived, anxious, dissonant lives we’re living.' As a fellow Hashimoto's sufferer for 15 years, I feel very seen by your post, which is one of the best explanations of Hashi's I've read (thank you). As a Clinical Psychologist, I am continually struck by the huge overlap between AI conditions and trauma - both direct and intergenerational trauma - and the nervous system dysregulation that trauma generates. The research has yet to fully catch up in this area, but for me personally, learning how to regulate my nervous system (through somatic therapy) was the key piece of the puzzle that finally put my Hashi's into functional remission (i.e. blood results have all remained in the normal healthy range for several years now, even through stressful periods and the rollercoaster of perimenopause). Trauma is so endemic in our culture and so in need of healing (alongside all the other lifestyle factors you name). Somatic therapies and nervous system regulation have become my passions.
Hey Sarah, such a timely post. Thank you ❤️Tick, EBV. Tick, Type A personality. I’ve also had two bouts of CFS (currently recovering from second bout). Diagnosed w Hashimoto’s last year. Im also perimenopausal. Just to complicate things. So each day I don’t really know which is causing the fatigue and inflammation but lifestyle changes help. Nonetheless, I have a similar philosophy to you which I adopted during my first bout of CFS - this was preceded by 10 years of Pure OCD. Maybe it’s my body telling me to slow down, take a closer look at things, release repressed emotions, change what I can, accept what I can’t. Anyway I do have a fab integrated Dr (and yes I’m already in the middle of conflicting views w my normal GP). After more extensive blood tests, I’m trialling a T3 specific medication. I can’t take the full dose (gives me an unsettled feeling - as you say listen to your body), so I take it every second day. I think it has improved my energy levels a little. So for anyone in Melbourne, I go to NIIM in Hawthorn to see Dr Michelle Woolhouse. She’s great. She’s already helped me w my CFS and I’m hoping she’ll help me find some balance w my Hashimoto’s. Take good care everyone. ❤️