healing auto-immune disease, by someone who’s been there #1
healing auto-immune disease: wear good red socks for this long journey!
I’ve been promising this for ages: a rundown of what I’ve done to get on top of my Hashimoto’s (hypoactive thyroid disease), and to throw in some advice from practitioners I’ve turned to for help (check out naturapth Angela Hywood’s healing eating tips here).
A few things first:
* If you don’t have auto-immune disease, you’ll still find this interesting. IMO, auto-immune suffereers are the proverbial canaries down the mineshaft. Our symptoms are signals of what our lifestyles are doing to all of us, a reflection of the over-toxic, hyper-adrenal, sugary, sleep-deprived, anxious lives we’re living. Again, IMO, Auto-immune disease types 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 tips!
* The below is advice I’d give to myself, if I could go back two years, to avoid the very bumpy journey I’ve had to ride toward a better understanding of the disease. I’m not giving advice to anyone else. Really, I aim only to inspire you to ask questions and find what works for you. And that’s the thing – there is no one cause or fix. 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 you’ve wanted to find out for a long time. Which is why you got sick…. More on this below. Finally, I refer directly to Hashimotos, but much of the thinking applies equally to other AI diseases.
* Feel free to send me your tips and I’ll post them as well.
OK, so here goes. I’ll do it as a Q and A for ease.
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 diseases, including Crohns and rheumatoid arthritis. It’s said to be among the top ten causes of death for women under 65. This “about thyroid” site gives more detail.
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 Hashimotos (an underactive thyroid). It often goes this way. A bit like a star that burns too brightly and eventually implodes.
Did I get fat?
I put on 12kg in a matter of months. Which was hard, given not long after I was plonked on a national TV show with 4.5 million Australians watching. Thankfully it was a show about food. And my co-hosts were chubby! I’ve lost about 3kg since then.
To be sure, Hashimotos is not a kind disease to the female ego. Other charming symptoms: my hair thinned, my nails flaked off to the nail pit, and I got to a point where I couldn’t walk. I’d stand and fall over. Oh, yes, and I got depressed. And inflamed. I HATE the inflammation. On “thyroidy” days, my right side swells up and tingles. My lips feel like they’re burning. I still get this when I overdo things (don’t sleep enough, do a little too much exercise or eat certain foods); it’s like a little red flag that tells me be to back off and look after myself. I also still get very tired some days and find it hard to move about. Again. Helpful red flag.
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), and got me real worried I’d never be able to have kids.
The weirdest symptom?
I lost the outer third of my eyebrows (weird, but quite common). I now have to pencil them in. And I have a really good eyebrow shaper who corrals them into shape (Gee in Double Bay 0404 034 312).
the resulting inflammation can make for big hands and feet
The weirdest little theory I’ve developed?
That AI tends to strike A-type people who push themselves too hard. A lot of fitness instructors and Gen X intelligent, successful women get it. I often ask AI sufferers if they agree with the idea that they knew they were cruising for some sort of bruising health collapse. They all say, yes. Just a little observation…
The first step?
A blood test, which found my TSH (thyroid stimulating hormone) levels were off the richter scale, which indicates my poor little system was frantically trying to jolt my thyroid into action (by stimulating it with TSH to produce thyroid hormones), not realising it had shut up shop. TSH levels are meant to be between 0.5 and 2.5 (or thereabouts; there’s a lot of discussion on this topic). Mine were at 85.
GPs can do this test for you. You then book into see an endocrinologist. I was put on Thyroxin. I’m going to say it bluntly: endos are good for getting the basic tests done and issuing prescriptions. But most, I’ve found, are so Western in their thinking that they don’t want to help further. It’s not in their interest to. They have a pill they can give you, which is meant to abate the symptoms, so don’t bother to look at what’s causing the lack of hormones in the first place. There are no concrete answers, so they don’t like to help you delve because the lack of certainty makes them uneasy. The apply a Band-aid only. This is my experience only, of course.
Thyroxin or T3/T4?
There is 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. (Nutritionist Sally Joseph explained all this to me; she’ll be posting her thoughts here next week). Which brings me to my next point.
The second step?
Research and ask questions. Fact is, no one really knows what causes AI and how to fix it. So you have to develop a wellness plan for yourself. That is, develop a robust interest in managing your health, and all the practitioners you encounter, by reading, asking questions and trying out different approaches. I love GPs and I love herbalists… and the rest. But, boy, they’re a recalcitrant bunch; they rarely agree. Take it as given that it’s your job to coordinate them and their conflicting wisdoms to develop a routine best for you. Annoying. But true. I’d really recommend taking notes and keeping a wellness diary. I didn’t, but wish I had.
What does my wellness plan look like?
Um, soup. Or maybe an onion. Or a matted ball of string that I’m gradually unknotting by gently loosening it around the edges, bit by bit. No one thing on it’s own works. It’s been more of a shifting of all my lifestyle habits. But here’s one tip to take on:
Don’t do dramatic shifts – they don’t suit our constitutions and make AI worse. Keep it soft, kind, gradual.
Which brings me to another really vital point:
If I could send a note to myself two years ago, it would say:
Dearest Sarah, Please, please be kind to yourself. It’s your abrupt, impatient, push-yourself-to-limits approach that landed you here in the first place. Healing will come when – and as – you learn to be kinder and gentler to yourself. This is good news. It’s time to treat yourself well. From Me. x
OK, so why did I get AI?
I’ve arrived at a point where 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, enduring 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. I’m happy these days. And clear. And for this I’m glad.
So I’m grateful?
Hell, yes.
How do I eat now?
* The first approach to work for me was alakalising my system. The western lifestyle has too much acid propping it up; too much sugar, alcohol, coffee, red meat and stress. Now consider this: cancer and autoimmune disease can’t survive in a system that’s been de-acidified, or alkalised. So it’s simple: cut out as much acid as is doable – wheat, dairy, potatoes, tomatoes, booze, too much tofu etc and eat lots of green veggies.
* I no longer drink coffee and I’ve cut my red wine consumption down to two glasses a week or so (in keeping with my belief about not doing anything harsh or abrupt…moderation is key)
* That said, eliminating refined sugar altogether really works. I’m not very good at it. One technique that helps is opting for products with coconut water and agave nectar. Ask in health food stores. If you live in Sydney, check out Suvaren Cafe. They have heaps of info on alkalising foods and all their stuff is sugar-free. Their website has heaps of info, too.
* I eat gluten-free. It’s easy. This chick – Shauna James Ahern of Gluten-Free Girl - has a great blog and Twitter with recipes and tips.
* I eat organic produce where possible. For a list of foods that are best to buy organic, go here. I find eating organic also makes me a more mindful eating (mostly cos the stuff costs a bomb…you don’t want to waste any enjoyment), which goes back to my description of the process as an intertwined process.
But the best technique ever?
Meditation. As one instructor said to me, just meditate. Don’t ask what comes next. Just meditate. I kid you not, since meditating for the past six months, twice a day for 20 minutes, my hormones levels (previously depleted to zip) have returned to normal. If you live in Sydney, I can really recommend Tim Brown. I’d tried meditating techniques for 17 years, but it had never stuck. Tim teaches TM style and has set up a great community where we meet weekly and talk about good, meaningful stuff. I now meditate, effortlessly, daily.
Exercise?
Next, I learnt to exercise less. Yes, less! Or at least less forcibly. Over-exercising causes a lot of “rusting” of our bodies. We don’t get told this. More exertion = more oxygen = more “rust”. I used to run a lot. Now I walk and do yoga and swim.
Sleep much?
Oh, gosh, you should. I did a sleep retreat at Gwinganna in Queensland and learnt how cell damage is repaired during sleep, but only once our bodies have attended to detoxing the crap we’ve put in it during the day. Ergo, put less crap in, and get at least 7-8 hours sleep so that the cell repair cycle has time to do it’s thing. When I don’t sleep, the next day my body is so inflamed.
What about gut stuff?
Many practitioners agree that autoimmune problems stem from – or at least can be healed from – the intestinal tract. My gut tends to agree with this. An alkalizing diet helps; so do psyllium husks, slippery elm powder and probiotics; so does eating my dinner slowly and mindfully so I don’t overtax my stomach. Angela Hywood from Tonic will talk about this in a later post.
Am I now fixed?
Well, what do you mean by fixed? I’m further along in my Great Undoing Of My Old Ways. Some days I feel great. The next I’m flaccid as a soggy lettuce leaf. It’s a constant journey, that’s frustrating but rewarding at the same time. My periods have returned (acupuncture helped with this), however.
I’ve come to accept the weight gain as part of my overall shift to a softer, gentler way of life. Rounded edges fit the picture better.
I have afternoon naps sometimes.
I know myself better…it took this illness to drag me kicking and screaming to this point. But it’s where I wanted to go. I tend to take the bumpy path on most things.
By way of a final word of advice: don’t take my word for it. Take your own and take control. Oh, and be kind to yourself. Always be kind.
And check out the posts next week from some experts….
* I throw this in as extra: If you seek a GP open to alternative techniques, scroll the list of practitioners certified by the Australian College of Nutritional and Environmental Medicine.
* I’ve updated this post for those of you who caught it earlier this week.
I don’t think there’s many ‘in the spotlight’ people out there who’d share so candidly about a topic so personal. For that reason alone, this was quite a read. But I particularly liked what you wrote about the way our ‘go-go-go’ lives eventually lead to breakdown. I think that if we’re not careful, there’s a lot of us out there who are sooner or later going to pay the price for ignoring our health.
Glad to hear you have taken control by choosing organic! I hope many more people learn from you and are inspired to take on a positive, proactive approach to handling auto-immune and many other diseases. Recognizing that what we put into our bodies will affect how it functions- is something most people have seemed to have forgotten. Thanks for sharing your story!
my pleasure! x
mate, you’ve inspired me to write a little more on that very issues. I’m going to update things now x
Thank-you Sarah for sharing, well, such an intimate journey!
Being kind to yourself…ahhhh…so simple yet we find THAT so incredibly hard to do! What’s with that?!
Similarly with meditation, we know that it WORKS yet we get more & more comfy in this KNOWLEDGE rather than just simply jumping in & doing it!
BUT, reminders are the new elixir, so merci beaucoup for another loving reminder to “Take Action”! [my word of the year by the way - see Christane Kane's blog]
Breathe, be kind to yourself, sleep! & eat well, WITH total enjoyment……going back to the basics is a beautiful [& healing] thing
Thanks so much for the insight Sarah, your words have come at just the right time for me. I have just been given Thyroxine for Hypothyroidism, after my TSH levels continued to be under watch for the past year. Although they have gone down from 56 to 10.2 they are still out of the normal range. I have only been on the meds for ten days but at the moment am not seeing that much of an improvement. But thanks to your post I have now learnt that I have been leaving everything for the medication to do and , through no ones fault but my own, havent done anything myself to treat myself…until now!
I so understand what you are saying when you describe your “thyroid” days. I havent really experienced some of your own symptoms but some days I literally feel like I am death warmed up, I cannot do anything, absolutely nothing except lay on my couch and feel despressed because I feel so crap. Its the worst…hopefully those days will be behind me now.
I now understand that I shouldnt leave it all to the medication to fix me…it is up to me to do it! Thanks for your inspiring post, its taught me alot and made things alot clearer.
I had Hashimotos about 9 years ago and since then it’s been a rollercoaster of frustration and small wins. I have been on a combo of Thyroxine and Tetroxine for most of that time (except when pregnant with my third child – you can’t take tetroxine during pregnancy and the extra bonus in pregnancy is that the baby doesn’t have a thyroid gland for first 3 months, so it takes your hormones – and yes, I put on more weight in first trimester than rest of pregnancy put together!!). My body has actually built up a resistance to thyroxine. There is one place in Australia that can test this and luckily my GP knew about this and includes it in my twice yearly tests. My endo was not helpful at all. When I said I was struggling to lose weight, he told me not to eat! I left in tears and have never been back.
So, are you on any medication – or are you able to manage it through lifestyle?
It’s such a struggle for me to lose/maintain weight that I’d be super scared to stop. Currently seeing a naturopath who’s got me taking extra zinc/selenium to help thyroid function. I’ve also come to the same conclusion as you about strenuous exercise – after punishing my body with 4 months of personal training last year – with no shift on scales and me just getting sick every month – I’m doing walking and yoga this year.
Thanks for sharing your story – seriously, some days you think you’re dealing with this all by yourself. Nice to know you’re not.
Hey Nikki, I’ll see if the guest posters next week can help you further…
Tania, I hear you!!! And, yes, it’s actually empowering once you realise that the change is necessary and that making small shifts is best. Easy does it!
Take care… xxx
Dear Sarah,
) ) While others celebrated schoolies, binge drinking and the like, he spent 8 weeks in hospital.(in 3 stints) Now in 2010 he still sees a specialist, although now only three monthly, and is constantly monitored. He has lost all his school friends, they all got on with their lives, and he was left behind to manage his.
Thank you so much for sharing your story. My son has been on the AI merry-go-round since 2005. It surfaced during this final year at school making the HSC an interesting journey.(He did amazingly well btw, on honours list twice
The drugs he was on/is on have also ballooned his weight by 25 kilos. He doesn’t drive as his L”s expired in the middle of the drama. He lacks energy and motivation to get moving most days. Admittedly so do I .. some days are just too hard!
I will have him ready your article, thank you so much, you are an inspiration.
Thanks sarah. Another amazing artacle
Chris, I send lots of good thoughts to your son. Must be very tough for a guy his age….REALLY tough. It will make him tougher and more of a man in the long run. I’m sure of it. I reckon he’d benefit from a mentor. Where do you live? If I can think of a great guy who’s been on a tough ride, I”ll let you know. Paul Briggs, a boxer who was one of the mentors on the Contender is really good with this stuff. Keep an eye out for him.
PS, in one of my Sunday Life posts I write about him…
Thank you Sarah you are too kind!
I will read your Paul Briggs article.
Knowing others are going through a similar experience makes such a big difference. The more of these stories people have access to the better. It helps us mums as well !! Yes he will be a better man in the long run, i have no doubt, in fact he already is. The next step for him is working out what to do with his life, and where and how to start doing, and managing it.
The journey can be long and lonely and this is why i appreciate so much that you have shared your story.
A mentor is probably a good idea, we live in country NSW, so probably not as accessible here as in the city. I will inquire from his GP next check up.
Thank you for your caring thoughts Sarah, it means a lot
Chris
PS a girl called Natalie, from Melbourne writes this blog
http://www.lemon-butter.blogspot.com/
she has an amazing story!
Wow, I don’t believe I had ever heard of this disease before I read your previous article . This is such an eye-opener! Sarah, you’re an incredibly brave and kind individual for sharing such a difficult and personal experience. But I’m sure it feels rewarding as you have helped a few people along the way. I wish you well, and hope you continue on this journey without overdoing it! All the best x
Hi Sarah,
Thank you so much for your honest and informative article.
I know that you’re not a doctor but in your opinion do you think that medication is necessary or can hypothyroidism be healed purely through lifestyle changes? I’d be really interested to know what you and your guest bloggers think!
Laura x
This goes for anyone suffering from a chronic illness – always rely on the fact that you know your body better than anyone. For myself (different AI illness), I found that medication helped my symptoms but at the same time kept me from getting better. I would never recommend to anyone that they stop their medication. I only gave it a shot as I was at my wit’s end as to what my next step should be.I was in a fortunate position where I could drop out of life, sort myself out by trying every possible treatment, and then slowly rejoin life.
The gifts/lessons I’ve been sent through having an AI: insight as to what’s important in this world, humility from knowing I can’t control everything, proof that even through tears I am able to make myself and others laugh, comfort that life will tell you when you’re doing it wrong, and true knowledge that when you speed up your own drip to get out of clinic sooner you get an ice cream headache.
Thanks so much for this post. I have Crohn’s, and while I’m managing my symptoms with traditional medicine, I’ve been trying to reach out into a more lifestyle-based management plan. It’s so encouraging to be reminded that a proper diet and sleep really do help, and they’re worth pursuing.
As much as chronic illness is a pain in the ass, I have to agree: it’s one of the best things that has happened to me.
thank you for sharing that.
Hi Sarah
I seem to be on a similar healing journey to the one you described. For the past 2 years, I have been feeling fatigued and depleted, suffering migraines and experiencing severe night sweats. With my 40th birthday looming, my doctor suggested that I was experiencing the symptoms of early menopause. I started investigating such conditions as adrenal fatigue and was considering bio-identical hormone therapy.
After suffering a big set-back in my personal life, I decided to make my health a priority. It’s been about 4 months now, and the changes to my mood, outlook and energy levels have been enormous. Like you I have found moderation is key – my days of excess (too much or too little of anything) are behind me now. Previously I was used to judging myself harshly and putting myself last. These days I consciously work at thinking only kind, loving and encouraging thoughts.
I’ve eliminated the ‘trash’ from my life – in terms of TV, tabloids and junkfood. I shop daily at my fresh food market. I’ve cut right back on caffeine, sugar and refined grains. I drink more water and eliminated alcohol completely (I was never a big drinker). I’m a huge convert to fish oil supplements and I’ve started taking extra zinc and B supplements since I eat minimal meat proteins.
I begin each day with my own whey protein and berry smoothie and enjoy a relaxing meditation session in the bath before my kids wake each morning. I practised pilates more than 10 years ago, but found it difficult to keep up once my kids came along. I have recently discovered another form of exercise that I LOVE, LOVE, LOVE – and I don’t consider myself a sporty person at all.
I bought an expensive bellicon rebounder (basically a mini-trampoline) and it’s one of the best things I’ve ever purchased. I’m not a ‘morning person’ but when I stumble out of bed I hop onto my rebounder, pump up the music and 40 minutes later, after bouncing and dancing I feel totally invigorated. My body and posture have improved (although I’m naturally slim), my skin is more toned and glowing and that stubborn patch of cellulite is clearing. I’ve tried gyms and treadmills before and for me they are a form of slow punishment.
I know I sound like an infomercial but if you investigate the benefits of rebounding you will see there are so many proven benefits, especially in relation to cleansing toxins from the lymph system. That was my main motivation for trying rebounding because I noticed my body had started changing shape – feeling softer and ’squishier’ (which I put down to hormonal imbalance). I just wanted to share my excitement with you because I’m shocked what a difference it’s made to my core strength. I feel more alive and vital than I have in years. And for the first time ever I’m exercising daily – no excuses needed. I only ever aim for a minimum of 10 minutes but 40 minutes just flies by.
I think when you make the effort to slow down and listen to your body, it guides you in the right direction. Thanks for sharing your story with us!
Hi,
Great article Sarah,
I also have Hashimotos which arrived just as I had recovered from four very debilitating years of Fibromyalgia (which I managed to beat through diet, supplements, natural therapies). I’ve been toying with the idea of writing about my illness for a while and it was great to read this especially from someone younger and in a slightly similar business (I’m 29 and run my own lingerie compny), since these conditions seem to be something that are less talked about in younger people, or maybe we just aren’t speaking about it enough?!
Thank you for taking the time to put out some useful information out there, which has also reminded me not to slack off on looking after myself!
Loulou xo
This is a wonderful post and speaks volumes. Thank you for sharing.
I had a similar experience last year, when my neck totally seized and I was in chronic pain.
As a result, I started acupuncture, slowed down, took half a day off work until Christmas and most importantly, started saying ‘no’ to things.
I just ate 3 pieces of shortbread, so this was a good reminder to lay off the refined sugar and hit the fruit!
I’m flattered you say I’m “younger”! I presume you don’t mean “than you”. (I’m 36). x
I work closely with the GP’s at ANCEM (Australian College of Nutritional and Environmental Medicine). and I urge you to find an integrative open minded medical doctor as a part of your wellness team.
Finding a doctor who understand Thyroid Health is about MORE than just Thyroxine is a MUST!
I attended a recent lecture in Brisbane by an Australian thyroid Guru, Dr John Lee MD. The lecture was entitled “Man cannot live on Thyroxine alone” – he discussed the critical roles of adequate vitamin D and Iron to enable your thyroid hormones (synthetic or natural) to work effectively. It is also well known that Vitamin D deficiency is closely linked to auto immune disease.
Have your levels checked out.
Angela Hywood ND.
Phew what a relief it was to read this! I was recently diagnosed with Hashimtoto’s and am all at sea with the what, where, and who’s of it. Thanks for the explanation and to everyone for feedback.
I think I was going downhill for a while before I had some blood tests that showed the havoc of Hashimoto’s .
All these things were going weird. My knee swelled up – I thought it was jetlag. My digestive system was moving at a snail’s pace – I thought it was allergies. My cycle was on a ‘choose your own adventure’ setting – I thought it was the pill, or Lord give me strength, early menopause. I was putting on weight – I thought it was from giving up cigarettes. I was sleepy all the time – I thought it was depression. I was crying everyday, howling in my room like an overgrown emo – I thought it was delayed grief over a gnarly breakup I’d been through a year previously. And on it went…. A reason for everything. And the tired-er, sadder, more lethargic, and dim I became, the more double shot coffees I drank and less proper food I ate. I’d already given up alcohol a few years ago (moderation is as much a mystery as pure physics to me) but in a fit of subsequent virtuosity replaced water with diet coke.
Over the past three months, since my diagnosis, there have been HUGE changes. I am on thyroxin and saw a dietitian who devised a food plan that has me eating breakfast, lunch, snack and dinner. I have let go of recreational sugar (all types, as I said moderation and me don’t mix), artificial sweeteners and diet coke. I am down to one coffee a day and am drinking water (still ew, but).
So far so good… The fog is clearing and I am out and about more, though I still feel sleepy. Really sleepy… am hoping this will shift soon. I don’t cry as much and my skin, mood swings and enjoyment of social activities is loads better. I don’t miss the sugar as much as I thought I would but cutting down my coffee is HELL.
Having said all that I would like to say how grateful I am that it is Hashimoto’s I have. It has a way cool name for a start. And for a second it is relatively manageable. As illness’ go – I could do a whole lot worse.
love, love, love everyone’s comments. Ceridwyn, that stuff you say about “thinking it’s something different” is so true. It’s so misdiagnosed…and look at the litany of symptoms… EVERYTHING that we ALL suffer. But somehow we get it all and magnified. As I say, we’re the canaries down the mineshaft.
I get the swollen leg thing – my right foot and right hand. Weird. And sometimes my knees just give way. Anyone else?
hehe, yes I meant ‘younger’ in the general sense
but you’re still young!
The thing that actually made my specialist realize it was Hashimotos for sure was because I was breaking out in Hives every single night for about a year, I thought I was going mad / was allergic to about 100 different things, until I casually mentioned ‘Oh I keep getting hives’ and he goes ‘Oh that is a major symtom’ and I thought HURRAH! .
There are a million and one weirdo symptoms. I’m just going in for my annual blood tests, a little early as I have a new one where after breakfast in the morning my hands go numb and tingly (!), I thought oh I should get to the doctor but then thought actually it’s probably thyroid connected and I should get a check up!
Ceridwen – In regards to diet, I’m a lot more slack than I was with my Fibromyalgia, BUT when I was ill with that I followed a very strict Anti Candida diet (I reccommend a woman called Erica White to look into) and it literally took me from being unable to walk to being half functioning and I 100% believe that it was not having sugar and I think caffine and stimulants that made the difference, so stick with it! having said that, once I was better I did start to eat it again, but I’m trying to kick that habit now because i still notice I get odd symptoms if I over sugar myself.
xx
I’m curious…just reading everyone else’s comments…my legs ache alot, at night I have to massage them myself, they tend to have a constant dull ache in the muscles, (I know I am sounding stupid here, lol), but just wondering if there could be any connection to my thryoid problems??
Wow – just read your post, followed a link from Gluten-Free Girl on Twitter. I have had ulcerative colitis for fifteen years and I couldn’t agree more with all the things you said. Meditation is definitely a hurdle I need to cross because I believe it would help me enormously. I have cut out wheat and most dairy, but with my uc as you can imagine I have had to cut out all kinds of “good” foods too. Sleep, gentle exercise, probiotics, psyllium husks and slippery elm powder are all dailies for me. I still struggle to feel well and it’s a full-time job, but I am grateful for the very healthy life changes I have had to make. Keep it up and I will be checking the rest of your blog! Take care!
Wonderful Sarah how your bravery in being so revealing has created a dialogue that is transforming lives…well done on both counts.
I’m constantly amazed how many people I come across now who are struggling with some auto-immune disorder – gluten and coeliac disease being the most prominent. Good friends of mine, a family of 5, have all been effected by it to some degree whilst Jenny, my sister, has just been diagnosed with a gluten allergy but she thinks it’s likely to be basic coeliac.
But what is so wonderful about this dialogue is the hope (and joy even) that is being expressed by tackling the matter head-on, making adjustments (some quite major) to one’s lifestyle and stepping out confidently in life.
Congratulations to you all for your bravery under some really tough situations. The emotional, spiritual & physical strain on you and your loved ones has no doubt been significant – but keep at it – your lives are “bigger” as a result and you are impacting others around you so positively. Well done.
It sounds to me like you need an Igenex lab test for Lyme disease and a Lyme literate MD to read the results when it come back – you have lots of the symptoms. I know it is not recognized in Oz but Lyme is there.. the typical Lyme test is unreliable so use Igenex labs and get a test kit from California.
Thank you Sarah for your openess and honesty. My daughter has celiac and now has a new AI that has thrown her a curve ball. So all the shared information can be a great encourgament.
What a wonderful, wise, honest article. Thanks so much for sharing your experience. As a naturopath I agree with everything you’ve said, so much so I’m suggesting clients, AI or not, read this too.
Keep up the good work, your body wants you to be well and am sure is so relieved that you are listening.
HI Sarah
Thanks for the lovely article. Nice to know that all of us with thyroid problems the world over feel the same way!
I have Hashimotos Thyroid and Celiac Disease ( recently diagnosed). Coming off gluten for me has been an amazing journey and I feel so much better.
I have a weird reaction of having a very under-active thyroid but having a reaction to the thyroid meds that gives me the symptoms of an overactive thyroid ( heart palpitations, sweats, dizziness) so I am on a beta blocker ( inderal) to help me stay on the medication and get my thyriod levels up.
Please check out my blog at http://www.living-with-celiac.com and keep up the great blog.
Hi Sarah – as a patient with a rare autoimmune illness (autoimmune autonomic neuropathy, for those really interested) I am grateful to you for raising the profile of these illnesses. However, my gratitude is tempered by some of your comments, and those others have made in response. I know you acknowledge the role of gentics and other factors, but you ultimately attribute your illness to a “need” to get sick. I know that for me, and many others, this has nothing to do with it – I was actually leading a healthy and well-balanced life before I got sick and it appears to have been something as simple as a common cold that “turned on” the genes that made my immune system attack my own body. Patients with these illnesses, which are often underdiagnosed or misdiagnosed as mental illness, are filled with enough self-doubt as it is. I have been cripplingly ill for almost four years (I now study only part-time as full-time uni was too much for me to manage) and the idea that my personality or lifestyle may have brought this upon me is devestating and something it has taken a long battle with myself to overcome. I also struggle with some of the advice that you give about managing autoimmune illness. Although I believe in, and try to live, a balanced and healthy lifestyle, to state that these illnesses can be healed from the gut is a gross misrepresentation. In my case, a team of specialists and a carefully managed medication regime are a necessity to keep me well – before I found these doctors and pills I was kept busy trying all sorts of lifestyle modification that did nothing. Also, I think that you fail to give doctors due credit – although I have seen my share of bad doctors, those I have stuck with, in a range of specialities, are compassionate people who have gone far beyond shoving me out the door with a prescription – lifestyle modification is key to their suggestions, however it is all tailored to me and my condition (for example, any aerobic exercise it out and a high salt diet in, which runs completely counter to the conventional wisdom on a healthy lifestyle).
Tania – re your leg problems, I seem to have exactly the same problem & I suffer from Hashimotos too.
Am like you, wondering if there is a connection…
Also thanks to you Sarah for posting a couple of great blog entries. It’s been really helpful and good to know there are other people out there going through the same thing.
[...] was reminded of this when I read Sarah’s earlier post about how her body often felt inflamed as a result of Hashimoto’s. Only a few weeks earlier I had [...]
[...] also has hashimoto’s disease. I posted my experiences with auto-immune disease a few weeks back. And now I’ve asked Clare to share: Weirdest symptoms? A swelling in the [...]
Hey Sarah,
I have/had CFS, another (bastard of an) autoimmune disease and have been dealing with it since 2005. Mia Freedman let me write about it on her site here;
http://www.mamamia.com.au/weblog/2009/11/guest-post-what-its-like-to-live-with-chronic-fatigue-syndrome.html
..which, if you’re interested, is the quickest way to learn about my journey.
I read a lot of what you write and both agree with and relate to heaps of it. You’re one of those people where I always think, if I met, we’d just agree with everything and constantly be chanting, “Yes, EXACTLY” to eachother in coversation. Love reading your stuff.
Great article, keep up the fantastic work! x
Sarah,
It seems like an amazing coincidence that I have stumbled upon this article.
I have just turned 20 and was recently diagnosed with hyperthyroidism.
Apart from the fantastic tips above, is there anything else you would recommend? I assume that the advice would probably be quite similar, but is there anything else that you wish someone had told the 21 year old you when you were first diagnosed?
Also, I was interested when you said that you learnt to exercise less – what do you regard as being too much exercise?
Thank you for your honest account of your experiences – they provide so much more insight than doctors or specialists can provide.
Yes I’m intrigued by these ‘exercise less’ comments as well. How do you know when it’s too much?
I’ve signed up at the gym several times throughout the years but instead of feeling energized I left feeling stressed and depleted. I’m naturally very fit and active, preferring to walk everywhere, however I never found an exercise that felt ‘right’ until I discovered the mind-body connection of pilates.
When my kids came along, it was more difficult to incorporate pilates into my lifestyle. Now that I’ve discovered the joys of rebounding, I’ve finally found something else that just ‘clicks’ and feels instinctively and effortlessly right for me.
How are you determining your maximum energy output – is it length of time, intensity, amount of sweating or puffing – or are you simply slowing down to ‘tune in’ to your body’s signals? I’m curious…
Hi Sarah,
Reading your story i couldnt help having small chuckles to myself, as it felt like i was reading my own diary! I was diagnosed with Hashimotos thyroiditis when i was 24. I am now 30, with a beautiful 4 year old son. I never thought i would be able to have children as the first thing my endocrinologist told be was that i had the metabolism of a 95 year old woman and my child would end up with brain damaged and severe learning dissabilities.
At the age of 24 it was the last thing i was expecting to hear, and so too was my fiance at the time and he ended up leaving me telling me i couldnt give him the family he wanted, and his parents thought it was the best thing. Looking back now, i am glad this has happened, as i now feel blessed with my life and the amazing partner and son i share it with.
In the beginning it tool serveral visits to various doctors to finally test my thoyroid. I use to sleep my whole weekends away,… usually about 16 hours straight. The doctor who finally tested me, was surprised i was not in a coma! After the initial shock, and settling my into my life on my own (within 3 weeks of finding out) i knew it was time to look after me, and to put myself first. I walked everywhere. I tried to go to the gym, but after each intensive workout, i would come down with a bad cold, my muscles were so sore it took atleast a week till they recovered, so i realised it just wasnt for me. Walking was the best form of excercise, plus gave me a time to clear my thoughts. Food was another important thing. I would suffer with severe stomach cramps and terrible (i hate to say this!!) wind! I cut out all bread, pasta, rice, cakes etc. I eat fruit salad for breakfast, youghurt for morning tea, a green salad for lunch, another youghut in the afternoon and meat and veg/salad for dinner. Within the first 6 months, i lost 8 kilos and had so much energy i felt like i was 19 again, and didnt realise how bad i had been feeling.
6 years on, i do struggle with my body sometimes, but as soon as the systems come back, i know exactly why… its my diet!
I hope to be able to read more of your journey on this blog, and any tips or advise is great to hear, as keeping your body and mind happy is an ever adjusting process!
Thanks again for a great read
)
Wow, this is so interesting. I can’t believe the doctor told you that alarming stuff about your fertility. So narrow! I’m exactly the same with exercise. I just CAN’T push mushelf anymore. It hurts and I get sick, too. I’ve had one thing after another after another. The wind thing…me, too. But since I’ve cut out gluten and sugar…alll happy!!!
Hi Sarah
You have been a great inspiration to me. I have been suffering with
hashimotos for over 12 years and just recently have had to increase my
medication due to all the symptoms you know so well. I would like to
add that I just recently noticed that I also had restless leg syndrome
and I don’t know if this is coincidence with my Hashimotos flaring up
again but I’ve starting taking magnesium for my restless leg Syndrome
and have read that Magnesium is a great supplement for Hashimotos as
well. So I have just started to feel a little more human with my
medication increase and magnesium intake. Not sure if any of your blog
followers with hashimotos are aware of this?? I love reading your
blog. Cheers Joy
[...] The Byard/7.30 Report/black cohosh link. • Sarah Wilson’s great article about living with Hashimotos, an autoimmune condition of the thyroid. • “Goitrogenic” foods [...]
[...] Another week, another installment. A month or so ago I posted my musings on my not-so-amusing tacklings with hashimoto’s. [...]