If I had a dollar for every time I’ve been asked how I manage my autoimmune disease I could buy a small island. I’m happy with my two-bed flat, so I’ll share my experience and tips and philosophies on it all here for free.*

healing auto-immune disease: wear good red socks for this long journey!
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 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. 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.

Have your say, leave a comment.

  • Thanks for sharing your story, you are right a diseases can change someone’s life.

  • Jackie

    Hi. I have just read Dr Kharazian’s book on hashimotos and feel like I may finally be looking in the right direction. I have been struggling with hashimotos for 12 years and have been taking thyroxine this whole time with little/no results. I was always thin and healthy but am now approx 15 kilos overweight despite healthy diet and daily strenuous exercise. I have lots of other symptoms as we’ll. i need help and was wondering if you could recommend somebody to see? Thank you for your time. Jackie

  • Paul

    I have recently finished reading a book “Natural Cures” by Kevin Trudeau and found it very enlightening.I now understand my reasoning to decline Chemotherapy and Radiation Treatment at the time of my Disease, which has gone/ disappeared.Not all people find the right advice, therefore the more knowledge we have gives us more options to the way we address our our diseases.I hope you all well..

  • Ella

    I’ve just read Dr Mark Hyman’s blog about treating auto immune conditions. He seems to know what he’s talking about and advocates a step by step process. To most people though it will be financially out of reach and Functional Medicine is derided by conventional medicine, so it’s hard to have an equal choice.

    Our sterile lives may be part of the cause. We are surrounded by anti bacterial handwashes and detergents as well as being exposed to heavy metals, pesticides and GMO foods (which are more harmful to the gut). There needs to be a radical culture change. Our modern lives are making us sick and the pharmaceutical industry is steering conventional medicine away from looking at the ’causes’ because it wants to keep selling its drugs.

  • rocada

    VERY USEFUL – THANKS ! GOD BLESS YOU !

  • golfermar

    I have pmr what a nightmare. Tried prednisone for 21/2 years. Treated only symptoms. Please help.

  • De

    I’ve just been diagnosed with AI and am getting so much out of this blog- so much to talk about! Does anyone know if there is an online forum where this stuff is talked about more?

  • Sarah

    Thank you for sharing your tough ride with AI disease. It cant be easy. I’m a Mum to two very young children both with allergies. Your recipe books are so so good, but hard when you want to quit sugar alongside dairy, egg and nut free children. Coconut we embrace, but do you have any other tips, ideas. PS. Maybe in future books you could add some ideas for allergy sufferers. Many tend toward high sugar diets even on natural foods due to limitations. Ideas very welcome! Thank you!

  • Bel Passmore

    I was diagnosed a few years ago with hypothyroid disease. TSH levels were 200 it took nearly 6mths to bring these levels down to an acceptable level. I take high dosage medication and never have i been recommended to take such simple steps as you write. I find this blog very inspiring! I have kicked the coffee habit now to do the 8 week challenge. Many Thanks for sharing such private parts of your life and inspiring people to make a change for the better

  • KYLIE WALTON

    Some great books on this have been written by David Brownstein MD. He has specific books on the thyroid, hormones, iodine deficiency and many more. All about healing as naturally as possible. Would be well worth a read. You can buy his books online from australian store – ‘salt of the earth’ – http://www.saltoftheearth.com.au/component/option,com_sebercart/ck,2/lang,en/view,store/

  • Jim Trompe

    I’ve been able to cure my vitiglio, hashimotos, varicocele..I think it comes down low selenium(high iodine low selenium causes hypo) and or low iodine causing hypothyroidism. 60 years ago we had an intake of 6mg of iodide per day-you could see people treated for asthma taking 1-2 grams(1-2,000,000,000 micrograms) per day for a year. Now the “safe” upper limit is 1mg and with an RDA of 150 micrograms and the average intake has dropped drastically(and the number of people hypo. So you’re probably drinking 1000-2000 micrograms of flouride from your water supply(with a little chlorine for flavoring). which is the most active halogen and probably the most active element in existence–but your 300 micrograms of iodine(Im assuming you take a multivitamin) of the second least reactive halogen is going to successfully compete for uptake? Did I mention your bread and mountain dew have bromine in them too? Japan has the longest lived fittest people in the world..highest iodine intake, no flouridated water. I took some high dose iodine (6mg)that made my urine smell of chlorine..googled iodine smelly urine and found out I wasn’t the only one. Endos.yeah they don’t know anything, not even current research. Lets play chase the crazy blood tests with ineffective T4, while ignoring patient symptoms. I read a book written 40 years ago, its given me better advice than 95% of modern doctors.

  • Jim Trompe

    You need T3 in there as well otherwise everyhting will be out of whack.

  • Shae

    Fav post! My levels were minus 523… Through diet I managed to heal myself and in 6 months I am in the happy level zone. I looked as if I had liver cancer (very yellow).

    Sending so much love to everyone healing themselves.

    Thanks Sarah x

  • helen

    Hi

  • helen

    Hi Sarah, great post. I was diagnosed with graves after having my baby age 30 (common after pregnancy) I was very anxious and lost 4 stone.. After a few yrs it got worse although this time I put on weight! I had radioactive iodine which didnt work so had my thyroid removed (surgeon cut my vocal cord!) 4 yrs ago.

    I discovered I had coeliac disease 2 yrs ago (didnt have typical symptoms of low weight, diarrhoea etc; my symptoms exhaustion, itchy rash scalp and brain fog…there is a high correlation between thyroiditis and coeluac so get tested BEFORE going gluten free. Also, look at adrenal function and yes sleep more and do yoga etc. This should also improve your T3 from creating too much RT3 .
    If you have coeliac disease then take digestive enzymes along with probiotics and you will prob need iron, calcium, b12 and vit d supplements for a while. You may also be intolerant to dairy until your villi is healed. For thyroid health take a good multi vit including selenium and zinc. Thanks for info, wish id had it years ago 🙁

  • Tracey Francis

    Dear Sarah

    This is a desperate plea to help me. I know you are not a doctor. I’ve been told after having over $1200(thanks Sullivan & nicolaides ) in blood test bills that I have a auto immune disease BUT THEY can’t tell me which one! Today I went back to the doctor after researching your condition as I have a few symptoms. I asked the doctor was it possible if I had a thyroid condition & he didn’t like it and said that I had had so many tests and was tested for that. at the end I asked him for a printout of my blood test results. Now I searched for tsh and there hasn’t been anything done-could it come under a different name? I’ve tried googling and to no avail. I’m looking for a good specialist name to be referred to in Brisbane who specialises in Auto Immune Disease? Can anyone please help me urgently? as I’m not happy with the response I got from the doctor I saw today( he saw me in hospital as I had a car accident & the blood work identify an auto immune disease which I was told I had 2 years ago by my gp but until more symptoms came up, not to worry and it was dismissed). This doctor reluctantly said he would refer me to a rhemulogist but I don’t have any of those symptoms and think it would be a waste of time! And money! Can anyone recommend a good gp in Brisbane or who I should be seeing? I have a copy of my blood tests for the last 2 years. Should I see an encrologist (I know I’ve mispelt the word). My email is [email protected]. He put me on a steroid, pregiscone which I just feel is a band aid, he is tapering me off this-I’ve come down from 80mg in hospital to 10mg at present, but I had blood tests done Monday and my I’ve still got several areas marked as high! Any advice would be appreciated. Thank you.

  • Skits

    Hi Sarah,
    O.M.G I laughed at your blog. It’s funny but there’s that deep down feeling of ‘quiet desperation’ that led you to where you are and probably most of the girls reading this blog, me included.
    It’s true that it’s up to us to own our own health plan. I am two years down the track of dealing with AI issues. My GP was very dismissive of natural alternatives but I persevered and now working with a naturopath but this time i question everything, i research tirelessly (thanks Google) and now with the help of an autoimmune protocol diet, slow exercise and supplements I’m slowly seeing the old me emerge. I know it’s going to take a little longer and I might not be 100% back to normal but the closest I can get I’ll be thankful.
    Keep up the great work

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  • AIDAN WALSH

    Ehlers Danlos Syndrome Collagen deficiency…

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