healing auto-immune disease, by someone who’s been there #1

Posted on February 5th, 2010
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 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.

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  • http://www.bodyincredible.com Kat Eden

    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.

    [Reply]

    Sarah

    Sarah Reply:

    mate, you’ve inspired me to write a little more on that very issues. I’m going to update things now x

    [Reply]

    sarah Reply:

    Hey Sarah,

    Your website and article are both amazing, really inspiring. I share some of your symptoms and have done for the past 4 months, but I have no idea what the problem is with my body. My periods have stopped for 5 months, I have had a hormone test recently and am yet to see the results, and I get brain fog if over tired, some days I feel absolutely fine and others I have zero energy and feel sluggish, it’s really crazy and I have no idea what’s causing it. How did you first realise you might have auto immune and what were the first tests you had to find out what the problem was?

    [Reply]

    Aisha Reply:

    Thankyou for sharing your story.

    I too suffered graves not knowing for 3 years, i then became hypothyroid and now have to take thyroxine for the rest of my life.

    I 100 percent agree with this disease you have to change your whole life I too would drink 3 coffees a day , be over stressed , worked out like crazy , and had little sleep. Also a better diet with out sugar, and gluten free really helps ..

    I sill have days were i feel exhausted. And i wish there was a alternative to the medication but with out my doctors say i will die .

    I would love to hear anyones else story on this

    Jane Reply:

    Hi Sarah – thanks for sharing your journey- I’ve got Grave’s at the moment and am gradually coming right – you’ve reminded me that i really HAVE to make those changes to my lifestyle – no one else can do it for me. Will be heading by to my hypnotherapist for a top up on relaxations techniques and throwing out the coffee machine!
    Jane – Orewa, NZ

    [Reply]

    Lyndal Reply:

    Hi there,

    Great blog about AI, I have a few questions for this does this apply to someone with Hepatitis C Auto Immune?
    My friend has just started taking Steroids for AI for the liver and I am not too sure about this as the Alfred hospital was indecisive about whether he had AI in the first place and it was agreed by 2 doctors to place him on AI steroids.

    Would this be a different road or are all AI the same and can follow the same diet approach etc.

    Would love to hear back from you soon.

    [Reply]

    felicity Reply:

    Hi, how bizare that my fingers have led me to stumble across your website.

    I was only diagnosed last week with hypothyrodism- hashimoto’s. I have had a few other health issues in the past and I must be slow to learn with another challenge ahead!!! Me as usual present atypical symptoms but looking forward to righting all the hormones in my body and finding out more information. Glad to read about your experience, it has given me something to think about!

    Thanks, Felicity

    [Reply]

    ann Reply:

    I have just been diagnosed with hashimoto’s auto immune thyroiditis. went to see a Endocrinologists today total waste of time. Tomorrow back to the naturapath cannot wait to start on some medication. Hoping to get my energy back plus my life. All I can do now is educate myself.

    [Reply]

    Crystal Reply:

    Thank you, this was one of the more detailed and up front post I have read. I have Hashimotos and have come close twice now to dying. every part of my body shut down. I deal with so many issues but the one that causes the most pain is in my muscles. They are always so tight and stinging or numb.my neck tightens and shoulders and upper back and then I get migraines, and even had rainbow colors and waves in my eyes. I have changed my diet, but I cant work away from home. I never know what will happen. Can I get social security or some kind of help?

    [Reply]

    ann Reply:

    I don’t think so until a illness actually appears as a medical condition. Like the Endo said ” you have Hashimoto auto immune disease and somewhere a infection but you look quite well, and your thyroid is just a little high. So in the meantime time I walk around like a Zoombie and at work blame it on a blondie moment. My naturepath told me on Saturday that she can get rid of Hashimoto – I am now gluten free, compound of herbs which smell amazing. I have worked in the medical industry for 30 years. You must read and educate yourself and the one mainthing listen to your body it is very important. See if the doctor will document your conditions down on paper and honestly give it ago. Best of Luck

    [Reply]

  • http://www.mindfulorganics.com Ginny Simon

    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!

    [Reply]

    Sarah

    Sarah Reply:

    my pleasure! x

    [Reply]

  • lulubrownskin

    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 :)

    [Reply]

  • Tania

    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 d