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.
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January 31st, 2010 at 11:57 am
mate, you’ve inspired me to write a little more on that very issues. I’m going to update things now x
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November 9th, 2010 at 3:54 am
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?
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May 30th, 2011 at 1:37 pm
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
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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!
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January 31st, 2010 at 11:57 am
my pleasure! x
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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
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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.
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February 5th, 2010 at 11:43 am
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
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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.
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February 5th, 2010 at 11:40 am
Hey Nikki, I’ll see if the guest posters next week can help you further…
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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.
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Thanks sarah. Another amazing artacle
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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.
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PS, in one of my Sunday Life posts I write about him…
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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!
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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
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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
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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.
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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.
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thank you for sharing that.
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November 25th, 2010 at 9:59 pm
I agree with Christen about rebounding as exercise. I’ve had a few years of being below par with my health, and increasing weight no matter what I did regarding exercise. My sinus was a huge problem and led to headaches and a numbness in my head. I’m menopausal, so don’t have any more of those symptoms. I was at my wits end and after reading Donna Gates Body Ecology, everything fell together. I’ve had my mini trampoline about three months ago, but it’s been such a great form of exercise. I actually smile when I think of doing it, and after Donna Gate’s words on the bellicon mini trampoline, I would recommend it as exercise to anyone with health problems like ours. Like Christen, I put my health as a priority and paid a lot for my bellicon, but i’m so glad I did. I don’t stick rigidly to Body Ecology now, but i’m religious about my daily exercise because it feels right. Lise
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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!
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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
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February 7th, 2010 at 8:07 pm
I’m flattered you say I’m “younger”! I presume you don’t mean “than you”. (I’m 36). x
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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!
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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.
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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.
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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?
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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
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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??
[Reply]
November 26th, 2010 at 10:37 am
Hi Tania. Very late reply to your post I know.
Yes, achy joints and muscles can be a symptom of thyroid disease, however it can also be associated to other illnesses including fibromyalgia. If I were you I would discuss this with your doctor just to be sure
[Reply]
December 12th, 2010 at 11:34 am
Hi Kris and Tania,
aching joints and muscles were the symptoms that first took my cousin to the doctor, she thought she had inherited her mother’s Rheumatoid Arthritis! but it was a good old clapped out Thyroid, luckily for her Levothyroxine seemed to get rid of the symptoms.
By contrast, I have always felt that my joints and muscles have been worse over the 5 years that I have taken mainly Levothyroxine with some Liothyronine (T3) for the last year. T3 improved mental fog considerably, I was supposed to break a 20mcg tablet and take 5mcg twice a day. OK, if you want to lick the powder and bits off the worktop! So I just took 10mcg once a day. This not the best solution since T3 releases all at once into the system and only lasts about 8 hours. I am looking into getting slow- release T3, hopefully soon at my first visit to an endo. I predict his response will be a wonderful combination of arrogance and ignorance, I hope I can keep a straight face,correct predictions can be entertaining! If the Endo survives the T3 questioning, I think a request for T2 (Di-iodothyronine) as well as slow – release T3 may put him over the edge!
I digress, back to the joint /muscle pains- mainly in bed in my right leg and lower back which I damaged many years ago in an accident. These pains waken me up most nights, turning over is painful, getting comfortable is harder. I can hardly get my right sock on , laced shoes are impossible. I also have pain during the day but moving about helps to keep it at bay. I am sure all my finger joints becme swollen and arthritic- looking with occasional pain after I started taking Levothyroxine, but it is hard to prove, as it is of insidious onset.
About 3 weeks ago, I forgot to take my tablets away with me and experienced a fast and definite inprovement in joint and muscle pain so I didn’t take them for about another week to see if the effect continued , and it did. I did not want my cholesterol and blood pressure to increase again, so I just took 20mcg Liothyronine per day as one tablet, (no Levothyroxine ) and it gave me a constant headache, a symptom I very rarely get. I then split the dose 10mcg, twice per day and the headache went. Around this time I found the excellent Townsend Letter(2007) on Hypothyroidism describing in detail differing treatment combinations and how to substitute T3 for T4, I don’t think my endo had got it correct. I decided to replace the 150mcg of Levothyroxine with 50mcg Levothyroxine and 25mcg Liothyronine, not ideal but the joint /muscle pains are still much improved, but not quite so good as with no Levothyroxine. and I think I feel generally a bit better, but I know I could feel much better than I do now. I hope this info may have been of some use.
Best wishes, Sparkie.
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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!
[Reply]
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.
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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.
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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.
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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.
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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.
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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).
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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.
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[...] 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
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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.
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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…
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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
)
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March 2nd, 2010 at 10:21 am
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!!!
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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
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[...] 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. [...]
Sarah, I think there are many of us out there who can fully relate to your thyroid experience. I too suffered burn out and had to give up a full time job to try to restore my health. After years of suffering depression, fatigue, aches and pains, sore eyes, etc. etc. I was finally diagnosed by an iridologist who suggested I see my GP for a blood test for thyroid function. Sure enough I was underactive. I have been diagnosed with Hashimotos and after no success with Oroxine I consulted a doctor/therapist who prescribed T3 in the form of slow release tertroxin compounding capsules. Obviously I have had to have the dosage of bot T4 and T3 adjusted over the years, and I still have some of the symptoms. As you rightly say it is up to each of us who suffer autoimmune conditions to pace our lives and be kind to ourselves. We realise that we have this condition and we will have it for life, but it’s up to us to explore ways to improve our lives in any way we can to reduce the unpleasant symptoms. Good luck to all with thyroid conditions – live happy, healthy lives and be good to yourselves.
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Hi Sarah,
Thank you so much for sharing your story. I have just been recently diagnosed with Hashimoto’s after at least 12 months of symptoms and thinking I was going crazy. I’ve been taking Oroxine for 2 and 1/2 weeks now so its early days. I have done quite a bit of research and have decided to go gluten free and as organic as I can. I can totally relate to your theory of the personality type that gets AI’s. I am married with 2 girls, I went back to uni and completed a degree and then had a total career change and now work shift work in the medical field. I’ve also had some major personal stresses in my life recently. Some days the thought of running away and living somewhere by the sea is so tempting. I’ve taken your advice and have started a wellness diary. I’m looking forward to getting some energy back and have accepted that I have to slow down and be good to myself.
Thanks again! xxx
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[...] excuse (oh sorry, reason) you like and I guarantee I’ll knock it right back at you. If even women with auto-immune disease of the thyroid (pretty much the worst condition when it comes to sudden and tough-to-reverse weight gain) can [...]
Hi Sarah,
Great post and great comments. I have had thyroid and other autoimmune symptoms for a while now and thankfully I’m starting to get a hold of it. I have been studying nutrition for a couple of years now but I think it’s when your not well that you learn the most – not just about nutrition but about health in general.
I’ve started adopting some of the practices of the Hippocrates Heath Institute (Palm Beach Florida) i.e loads of veggies, getting enough sun (vit D) and getting energetic treatments such as accupuncture etc. I recommend people jump on youtube and just search hippocrates health institute there’s some good videos but it needs to be taken somewhat with a grain of salt and I believe slowly integrated into lifestyle. Sorry if I sound like a salesman I have no affiliation with Hippocrates whatsoever.
I came up with an idea a couple of days ago which I thought might be helpfull creating an
ENERGY INVENTORY ie writing down things which improve your energy and things which drain your energy eg
DRAINERS may be negative person Joe, bad water, too much pizza, negative self thoughts, spending too much time on computers ( creating sore eyes, stiff body), not enough sleep
ENERGY IMPROVERS may be friend Kara (really positive so try to spend more time with her), veggie juices, walking, meditation, rebounding etc
You could really go deep into it and the more sick you are the more important delving deep would be.
Anyway its just a little idea I had
I wish everyone the best of health!
and remember to EAT GREEN & LIVE CLEAN
(veggies contain phytochemicals that can help repair DNA damage especially sprouts such as wheatgrass, sunflower sprouts and barleygrass in raw form/juiced – powdered form not nearly as powerfull)
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December 12th, 2010 at 12:05 pm
Hi,
weight problems seem to be a “biggy” for nearly everyone with Hypothyroidism, apparently according to the Townsend Letter(2007) 0n the TPA-UK website, T2 -Diiodothyronine has the biggest effect of all the thyroid hormones on the mitochondria of every cell and also the “brown fat” both of which are responsible for burning off energy.
Therefore perhaps if we start trying to drag the endos into prescribing T2 we may end up with slyph-like hypothyroid people with a damn sight more energy than they have now. Can you hear their outcry? IT HASN’T BEEN TESTED, the GMC won’t allow it and other such drivel. But, ironically, I believe you can buy T2 on the Internet, a boon to the anarchists amongst us.
Has anyone tried T2 ? I would be very interested to know.
Best wishes, Sparkie.
[Reply]
Hi Sarah,
Thank you for sharing your story. The more info there is out there about AI conditions, the better. I can completely relate to your sentiments about running ourselves into the ground. Before 2005, I was a very healthy, happy person. However after pursuing a PhD and working 60-80 hours a week (no holidays either) whilst still maintaining a social and home life my body completely crashed. I have had a weird bout of thyroid issues (no TSH but T3 and T4 fine – felt like hypo to me, fortunately it sorted itself out after a year), surgery for infertility issues, and finally diagnosed with celiac disease (this *only* took 2 years to figure out!). I believe the stress of my PhD tipped me over the edge. In the industry I am in, slowing down was not an option – it is very competitive. Unfortunately I was too sick to complete it (well, my supervisor would not support me cutting my hours back nor did he believe I was sick, but thats another story). My only wish is that people would be more understanding and supportive. I can see that I am very sensitive to our modern lifestyle, but most seem to be able to tolerate it – if only others could understand we are not built so strong! I used to be an A-type – now I am happy to work part-time and pursue my hobbies on the side and stay healthy. I also used to run but now only walk (this is a good metaphor for my life in general). Thanks again for getting the message about AI out there – its not an ideal life to have AI conditions, but it sure makes us stronger people who know what the really important things in life are. At the end of the day, my health meant so much more than the title “Dr” to me, and I never thought I’d feel that way pre-AI.
[Reply]
[...] you thought I’d dropped this series? Nope. Just taken a [...]
Thank you so much for sharing this information… that can take months for an individual to find out.
My health has been terrible and I’ve felt frustrated by my trips to the gp. I feel inspired by your posting. Best wishes to you.
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Goodness me…
I don’t know why sometimes we don’t listen to our bodies – even after facing the extremes of AI last year (loss of the large intestine) – I have kept pushing the lifestyle because I didn’t want to feel like my life had changed dramatically (duh?!).
The AI has just remanifested somewhere else now – chronic arthritis – and honestly my head just kept saying to push through it. I’m young(ish) and I’m certainly not going to go down without a fight. Yet your blog just told me I was going about it the wrong way. And boy, did it make sense. I think I knew in the back of my head I was ignoring the big issue in front of me – but as you know – sometimes it just takes that lightbulb moment. Thanks Sarah – I’ll investigate now a different way – I know rest is important (proven) but I’ll now look at my diet (rich in acidity) and become proactive instead of reactive.
Good for you and thanks.
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April 19th, 2010 at 12:19 pm
Claire, this makes me sooooooo happy. If I can encourage just a handful of people to look at the REASON they got unwell, and to make adjustments, my time on this planet has been worthwhile. Yes, rest is key. And it’s quite wonderful to do.
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Hi Sarah,
I know it’s been a while since you posted anything on Hashimoto – I was told I have it about a month ago and found this post so helpful. I just want to know more, are you writing more follow up posts on this? I still feel a little in the dark about it.
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May 14th, 2010 at 2:08 pm
stay tuned today…Claire Hooper posts!
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[...] manifestations (arthritis, Crohn’s, Lyme’s)…but as I’ve said since I posted my experience with hashimotos, the advice applies to everyone. Kids with AI are the canary down the mineshaft. We’re here [...]
Hi Sarah,
I’m not sure why i never thought to look you up before. I read an article a while ago in a magazine about your illness, but it never occured to me to check if you had a blog. I’m very glad to have found you and read this article.
I have been having hormomal problems for about 10 years and this year has been the worst year of all. My doctor diagnosed me with “estrogen dominance” years ago and i use to take Depo (contraceptive pill) to increase my progesterone levels, however this year i decided to again try something different, a bio-identical progesterone, and it basically did nothing. Nothing i take seems to increase my progesterone level, it will sustain my symptoms but not increase the progesterone. I’m now seeing a naturopath (who has put me on Vitex) as well as my doctor to try and fix this problem that affects my day to day life.
I’m just about at the end of my rope with it all and considering going back on the Depo, because i have tried alternative therapies before and they didn’t work, but after reading your article i’m wondering if there is a connection.
I think the most annoying part about this condition for me is no one can tell me where the estrogen has come from, how is it that one day everything is fine and the next i start getting what feels like PMS then, within a month im 5kgs heavier, struggling to stay awake, craving sweets like a pre-schooler, and have no control over my emotions.
Hopefully i will find my answer soon & i wish you all the best with your health Sarah.
[Reply]
Hi Sarah,
Thanks for your article. Are you taking any thyroid medication at the moment?
I was diagnosed with Graves about 10 yrs ago and removed my thyroid almost 4yrs ago. I wish I hadn’t listen to the endo, but not much I can do now. I think I flactuated between hyper and hypo then and now I know that I had also adrenal problems.
Anyway, because of this, I have learned a lot, like the effects of stress and worry, and had to change my diet and try to stay positive and not worry so much!! I eat gluten free and try to eat less cakes and buscuits hehe..still can’t totally give them up!
I’m working on trying to do some gentle exercise daily… it’s hard because I have some muscle weakness and get fatigue. But I know that by not doing any exercise I will not help my condition. So will start to do some. I had to totally slow down. I’m not working at the moment and trying to make myself better.
I’m finding it hard to get into meditation… but will look into it more after reading your article.
thyroid diseases are not as simple as the GPs and some Endos think. It not only affects your metabolism but your emotions in a big way. Having apathy & depression is not fun, and it’s due to the thyroid!! Also, usually when you have thyroid autoimmune diseases, it can affect other glands like ovaries and adrenals. I wish I had gone to a holistic/enviro doc back then.
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Hi Sarah,
What a fantastic, refreshing and honest article about thyroid disease. I also have Hashi’s, and have since developed celiac disease and pernecious anemia (both AI).
The only thing I can add based on my experience (apart from Endo’s are only interested in patients with diabetes and seem to know little about thyroids), is that Dr’s should also test for Free T3 and Free T4, as well as TSH when running blood tests. The ‘Free’ levels are the actual levels of thyroid hormone circulating in your blood stream, as TSH is only a measure of the hormone your pituatary gland produces.
This was important for me as I seem to be one those who have an issue at the cellular level converting T4 to T3 (I now take a combo T4/T3), but when I was on straight T4 my TSH was really low (indicating my thyroid was overactive), when in fact my Free T4 levels were very high (indicating overactive) but my Free T3 levels (the most important one and was very underactive), were extremely deficient.
In other words my TSH does not give an accurate indiciation of what is happening with my thyroid and I was actually at my worst when I started treatment on T4 and my TSH was low (falsely indicating overactive).
By the time I was diagnosed and treated my adrenals were almost completely fatigued as well. It took two years from first going to the Dr to get treatment. In this time I saw two GP’s and two Endo’s before I stumbled upon a GP who had an interest in thyroid disease. Out of necessity I was forced to learn a lot about my thyroid and now wouldn’t waste my time consulting with another Endo or a GP with little interest in thyroid disease.
My quality of life has improved 100% and I found limiting processed foods has contributed significantly to finally feeling this good.
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I have Celiac’s (diagnosed two years ago), so I know all about eating gluten-free. It’s interesting to see what other tips you have. I’m in a position where I’ve had to roll-back a lot of my activity. I moved to Cambodia six months ago and in the last month have had 3 parasites. It’s been a dreadful and dreary month. I’m certain that I’m more susceptible because of the Celicac’s. Trying to relearn how to take care of myself. Am also excited to check out how to alkalize my diet. Thanks for sharing!
[Reply]
Hi Sarah
Just reading this post, thank you so much for sharing. I have the same condition and have been working with Sally Joseph for 10 years – she is amazing. It is refreshing to hear from someone like yourself speaking honestly and openly about this debilitating condition. It does help people, probably more than you know, and you are doing an amazing thing.
Thank you.
Be well
Megan xx
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Thank you, perhaps the wake up call I needed. I push myself to the limit in every aspect of my life & get only an average of 4 hours sleep per night. My mum recently died from breast cancer & I often quietly question the universe, if that too is my fate. I know it is if I keep going like I am.
I owe it to myself, not just my 2 beautiful boys & my beautiful mum, to change my life before it’s too late.
Thank you again
Rachel
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What a wonderful thing to come across! I was listening to one of Gill Stannard’s RRR pod-casts on women’s hormones, and she spoke of your website and recommended reading it. So glad I did. About 6 years ago, thanks to the persistence of my naturopath, I was diagnosed with hypothyroidism (underactive thyroid). Blood test confirmed this, and though the level of my TSH was only around 6.5, my symptoms were awful. For the previous 4 years or so I’d gradually put on 15 kilos, got depressed, iron-deficient, etc. I put it down to vegetarianism at the time, but now I’m not so sure. My naturopath put me on the most wonderful herbal thyroid supplement, Thyrotone, made by Metagenics. She also told me to cut out all soy and goitrogenic foods (cauli, turnips, brussels sprouts, parsnips). Within 6 weeks I lost 10 kilos. I wasn’t dieting or exercising any more than usual, but the weight just dropped off. I started eating meat again, which also helped me feel much better and more energised. Within another 3-4 months I lost a further 5 kilos. I felt fantastic. My thyroid levels completely returned to normal, and at one point even went over active. I’m wondering now if this might be a red flag for Hashimoto’s?
However, Metagenics stopped making Thyrotone in about 2007, and didn’t come up with a replacement. I was put on a much simpler formulation, ThyroCo (Mediherb?) around mid 2007. I don’t think this supplement was as effective, and gradually noticed bad things starting to happen again: gradual weight gain, all manner of hormonal problems (heavy periods, fibroids, sore and itchy breasts, mid cycle pain)… all still around today. The last 2.5 years have been hell.
I saw my naturopath for 6 months, believing the problem was purely down to oestrogen excess, but none of her advice or herbs helped at all. I’ve also developed extreme joint pain over the last 3 years. While there may be mechanical issues in my knees, it doesn’t really explain the mystery of my knee pain, which came on literally overnight and wasn’t caused by any injury or trauma. While I’ve had treatment by physios and masseurs and have done loads of stretching and exercises, my knees are still not better.
I’ve had enormous levels of stress the past few years: my Dad had early-onset Alzheimer’s, was put in a nursing home, and recently developed cancer and passed away in April. I had my thyroid levels tested in May, and again they were underactive: only ever so slightly, but the highest level I’d had in years. Even so, the doctor won’t treat it yet, and I’m not sure I want to use conventional medicine anyway.
I’m starting to believe that the thyroid imbalance is at the core of all of my health problems, that and stress; that the thyroid imbalance has led to imbalance of female hormones and probably contributes to my joint pain.
I’ve recently started taking the new thyroid formula made by Metagenics for hypothyroid, Thyrobalance, in the hope it will be as good as the old Thyrotone. It’s early days, but we’ll see…
Am also thinking of going to see naturopath Gill Stannard about diet and other lifestyle changes. I’ve got a referral to an endocrinologist but am not too thrilled about Western medicine and attitudes of practitioners.
Anyway, a long story here, but it’s really great to read about your journey Sarah and your dietary advice in particular really interests me. It’s also nice to have a chance to discuss and share these things – it’s a pretty lonely road and most doctors are fairly unsympathetic.
Melita
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[...] what I use when my gut is playing up. I have a litany of stomach issues, many stemming from my auto-immune issues, some from just being an over-eater. It’s been called IBS over the years. I just [...]
howdy,
inspiring read, and I can empathise with a lot said. I’m a 35 yo guy and after partying heavily for a long time etc – I was diagnosed with autoimmune hepatitis about 10 years ago. At first i couldnt, or didn’t want to change my ways. I have come to terms with it a long time ago after a few blips – ie putting on 15-20kgs from the medication. This made it tough as it was a visible reminder everyday in the mirror.
Sometimes you just have to cop it on the chin.
Its in remission now.
cheers
Matty
[Reply]
Sarah,
Thank-you very much for sharing your story with us and posting this good information. I am 29 years old and was diagnosed with Hashimoto’s Thyroiditis in April this year.
I tend to agree with your hypothesis about AI striking people who push themselves too hard. I have always been a very driven person who has pushed myself to be a high achiever. I also have some good friends who are successful women (they will know who they are when they see this post!) who have health concerns, not hashimotos, but other AI conditions.
I first came upon your site in May and it has been a great help to me. I am getting better but still have high antibodies and a restricted diet, so your recipes are great!
I like your wise advice of being gentler and kinder to oneself, but am also struggling with the prospect that I may need to sacrifice my current demanding employment position to seek alternate career ambitions. The ‘red flag’ is certainly there and I am just in the process of finding out what to best transition to.
Thanks again very much for sharing, I relate closely to this post and it brings a certain level of comfort in unsettling times.
[Reply]
Great and informative post.
I was wondering if Loulou could give me a bit more info on how she got on top of her Fibromyalga?
My mom suffers from it, not terribly as some people do but enough for it to be a problem.
Thanks so much!!
[Reply]
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 39th 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.
[Reply]
Wow, Ok so I’m really sorry for spam commenting you!!! BUT as I said I’m new on your site and the more I’m reading the more I love what I’m seeing! Your story sounds VERY similar to mine, my food intolerances are really just my bodies way of saying “hang on and minute, I’m over this fast paced life, slow down and look after yourself!” I’m really loving your blog and can’t stop reading, glad to hear your life is getting better and better by the day xx
[Reply]
July 31st, 2010 at 7:54 pm
the intolerance…it says it all, really, doesn’t it. It’s saying our system is fed up.
[Reply]
I recently read that Hashimoto’s can be misdiagnosed as bipolar disorder, due to the extreme mood swings and the presence of mania. That explains SO much about a year period where I thought I was going crazy. I wish I knew that then, and more people talked about this!!
[Reply]
HI Sarah, I would like to email you the most comprehsive info you will find out hashi.
I am a natropathic nutritionist who did my final research paper on this topic.
I think you will really like it and scratch your head wondering why no one has told you some of these things.
I am not a fraud, Iam a published author, speaker, cleanse retreat facilitor at Gaia, and normal everyday chick who loves my job. Let me know where I can send you this info.
Cheers, Michele Chevalley Hedge
[Reply]
Hi Sarah!
When I first stumbled upon your website a few months ago, I thought, whoa, at least my condition is managed well by thyroxine (I was taking thyroxine for hypothyroidism since I was 16). I didn’t realise that the same medication was the one exacerbating my current medical condition: because 7 weeks ago my diagnosis changed from hypothyroidism to Graves’disease, an autoimmune disorder where the thyroid produces an excess of thyroid hormones.
That explained my excessive weight loss, thinning hair, weak nails, mood swings and depleted energy levels. Last Christmas I was fitted with a blood pressure monitor to take a 24-hour reading of my BP, which was on high everytime I go to my GP for a check-up. When the results came back they said not to worry (although my blood pressure was consistently high for the 24 hours) they said I’m just stressed from work, blah blah, we’ll check again, maybe you are just stressed when you are in a doctor’s clinic. When I take long walks or go up and down stairs I can feel my heart beating wildly and my hands shake. And sometimes I just feel the palpitations even when I am sitting down and not active.
The diagnosis late in June shed light to the symptoms I have: my palpitations, low energy: falling asleep right at the dining table, thinning hair, were all due to my body in overdrive with thyroid hormones while at the same time I have been taking the thyroxine all along. I have stopped taking thyroxine for 6 weeks before the diagnosis was given me, and when I stopped my medication, it took a while for the symptoms to settle and I can now see that my hair is on the healthier side again and my energy level is now getting better. My doctor asked me to wait a few more weeks before he puts me on anti-thyroid medication while he asked me to refrain from eating any iodine-rich food (sushi, seaweed which I love, iodised salt which we use at home). That was exactly the opposite when I had hypothyroidism that I have to eat an iodine-rich diet.
I am now so worried that my eyes will bulge out (as is common with Graves), and have been so stressed about it now that I feel my eyes having pressure and itchy all day long, as soon as I wake up. I hope this is nothing and just an allergy sort, but yeah, I’m going to see my GP tomorrow and mention this.
I read that this condition can also be mistaken for a bipolar disorder, which I felt sometimes I suffer from, where one minute I feel I have the grandest of ideas and cannot sleep while I dream all sorts of wonderful things to do and feel really great about myself and was able to stay awake for more than 24 hours and keep going, to suddenly feeling very low and unmotivated and uninterested in doing anything at all). I have just started a blog because at one point I thought about the worst and I will be told that my time is up, and it is not. I am at the low ebb at the moment but I’m pretty sure I will pick up again…. my merry-go-round continues, I think I really need to hurry my endocrinologist into treating me.
[Reply]
Thanks so much Sarah, as a 25 yr old with a newly diagnosed overactive thyroid i have felt completely in the dark. Ofcourse the specialist didn’t mention a thing about possible causes- other than to say my body attacked my thyroid. He reccomended Milo at night to help me sleep instead of my passionflower herbal tea. I normally try to limit sugar. But what is one to do when they don’t know anything about their condition and they want to be well- take a specialist’s advice. So glad I’ve discovered your story, it’s also inspirational to see you so successful and appearing so vibrant (saw you on GNW last night). It gives me great hope. Thank you thank you! x
[Reply]
I suffered a post viral syndrome where I had pain and crushing tiredness for over a year. I literally felt like I was dying! I was the same high achieving non stop individual. It wasn’t until I pulled back the reins did I get better. Now I do less, and feel better and happier than ever before.
[Reply]
Hi Sarah, thanks for your blog. It’s so good to have someone share their story about Hashimoto’s. It is obviously needed as the responses to your blog show.
I’m 70, was diagnosed 10 years ago, and (surprisek, surprise) so too my children.
It has been a bit of a roller coaster, but we are all functioning well (T3, as well asT4 and many other supplements, especialy Vit D and zinc – amazing so many Australians are deficient in Vit D today.)
Can I recommend http://www.drlowe.com to you. This (American) fellow surely knows what he is talking about. He specialises in thyroid and fibromyalgia and his website is exdtemely comprehensive. Mind you, many (if not most) endocrinologists don’t agree with him, but then, in my experience, your average endocrinologist does not do much for a lot of us with thyroid problems.
I was so fed up with not getting good treatment, then I read John Lowe’s website. I found a doctor here who was able to follow Lowe’s treatment protocol and improvement began. We all still need tweaking on a 3 or 4 monthly basis, and the hormones etc are a bit on the expensive side, but being able to fully function, physically and mentally, is such a blessing. It’s only when those functions have been impaired that one can appreciate the difference.
[Reply]
December 1st, 2010 at 1:52 pm
Hi Gita,
I have just recently been diagnosed with Hashimoto’s and have just started taking Thyroxine vi Oroxine.
I was fascinated by your response to Sarah and the reference in your message to “all functioning well”. I am interested to know the extent to which someone with Hashimoto’s can live a “normal” life and/or whether the condition can be reversed and the thyroid gland repaired.
I will certainly look up Dr Lowe’s website.
I would appreciate your comments on the above.
Regards, and all the best,
Ian
[Reply]
Hi Sarah
Wow thanks everyone for all the stories and info…so interesting. I was diagnosed with Hashimotos a few years ago under some very unusual circumstances. I was striving…doing, non-stop and unable to sit still. Running from whatever i couldnt face in my past and present. Coffee, alcohol and sugar played a big role.
I was in a dead-end uncommited relationship, depressed and unable/fearful to move forward. Unbeknown to me i had fallen pregnant (i was 42) and only found that out when i was mis-carriaging, and to cut a long story short had numerous blood tests and came back as having Hashimotos. I was also diagnosed with depression and fibroids.
Now on Thyroxine, but after reading this i will investigate a more natural way to control this condition thru diet and mindful meditation.
Thanks again.xx
[Reply]
My friend just sent me this link and it’s made my day. Have just started treatment for hypothyroidism (my TSH levels were 400, would you believe!). I’ve been wanting to know more but not sure where to turn. so thanks for helping me out.
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This is lovely to read. I have chronic fatigue syndrome and I A lot of what you wrote resonated with my own experiences. You seem to have come further down the path of acceptance and change in 2 years than I have in 6, but we’re both getting there.
All the best.
[Reply]
Hashi is a long journey to find that balance in life. Thanks for sharing. In Perth, you can find information on thyroid at http://www.thyroidwa.com/: Non-profit, run by autoimmune sufferers.
[Reply]
I also have been recently diagnosed with hashi’s and am wondering if anyone else feels better in cold weather, as my symptoms come back in warm weather. I am in bali at the moment working and it seems here i feel the worst, maybe it has something to do with foreign bacteria and stress on the body but I dont know. Has anyone else had this experience?
[Reply]
As I read your story I felt like you had been living my life for the past 3 years. I, too, was trying to be “superwoman”, exercised hard and worked hard. One night I sat in bed going over papers for work the next day, suddenly I had a tingling in my shoulder that shot down my arm and into my face. I thought I was have a stroke but it went away right away. Two days later my face was completely numb on the left side and I had developed a tremor in my left index finger and thumb. Unlike others I lost weight, but I had the hair loss/brittle nails/panic attacks and all the other lovely symptoms that go with an underactive thyroid
Anyway, to make this short – after initial blood tests I was found to be “hypothyroid” and my MRI showed leisions on my brain. Synthroid took away some of the symptoms but my dosage changes every 3 months as I bounce between too little and too much. Two neuros suspected MS because of the leisions and told me I would have to live with it. I asked if my thyroid was causing the problem and was told “no”. I had a lot of nerve problems and the hardest thing for me to deal with, was having problems with my calf muscles, it made it hard to walk. I finally quit my job, moved to a small town in a different province and decided my “working” life was over. It was the best thing to happen to me, my file moved to another neuro and the first thing he said was “have you not been tested for Hashimoto’s, in severe cases it can cause leisions on the brain”, gave me Gabapentin for the nerve problems along with B12. Everything is pretty much back to normal – I am also back to full time work after only being off work for 7 months, I just make sure not to push myself like before. I already had one warning!!! I am going to alter my diet based on your tips and see how that works. Thanks again for sharing your story it meant a lot to me.
[Reply]
Sarah, I’ve done the swing from hyper to hypo (quite dramatically). The info from the Prof. endo I consulted was grossly inadequate and inaccurate. I think you are quite right that this is not something we are cured of, it is something we manage. I am going to try de-acidfying myself. I also do TM-style meditation but lately I have been both stiff and sore in calf muscles and other joints and nervous and having fast heart beats.(which I think is contradictory). It is quite right you cannot leave it up to the doctors, as they are lost in the general and lose the individual. Also they don’t see us as interesting as we are just trying for an optimal life, we are not about to die from it…. (their job description is to save lives…) Thanks.
[Reply]
Sarah,
I’ve just become aware of this site and am really impressed.
I’m the convenor of thyroidwa a not-for-profit group here in Perth and have been the convenor for the past four years, i’m 68 years old. At our regular meetings and presentations we hear all the stories that your readers write about. All of our committee members are thyroid disease sufferers and have had some terrible journeys. Mine was thyroid cancer so am now fully conversant with that journey
Our role is to help/advise/put sufferers in touch with medical practitioners/look at alternatives
and we have been successful in achieving these goals.
There is very little information about this disease from the Health Department or other professional bodies in Western Australia.
We are in the process of moving the group from interested people to an incorporated body so we can attract funding to enlarge our reach (particularly country areas) and provide more
information. It is a hard road making the move.
One item I would like to mention and I have only just become aware of is if you are a thyroid
sufferer (particularly Graves) you must read a book called Sweet Poison by Janet Starr Hull or go to the website of The Aspartame Consumer Safety Network. The author linked her Graves
disease with the use of Aspartame (the sweetner used in diet products and is everywhere). This is a very important read!
If any of your readers are in WA and need help/advice please do not hesitate to contact us, we are quite happy to answer queries from anywhere in Australia.
Cheers – John
[Reply]
October 19th, 2010 at 10:32 am
John,
I quickly checked out your website and it looks great. Excellent resources and links.
I will be going back for more.
This is another sign of some really good work going on in W.A., as The W.A. ME/CFS site
is one of the best I have seen. Looks like the folks in W.A. are leading the way with some
of this information. Thankyou.
[Reply]
I never heard back from you on my Evidence Based Medicine Hashimoto’s.
I am happy to hear your thoughts.. the good the bad and the ugly.
Cheers,
Michele Chevalley Hedge
Naturopathic Nutritionist from A Healthy View
[Reply]
[...] she’s become a bit of an e-soul sister. We connected via our blogs and because we both have hashimotos (thyroid disease). We ask each other if we’re ok from time to [...]
this sounds a lot like mercury poisoning to me. i had 63 autoimmune symptoms until i had my mercury dental amalgams removed.
[Reply]
December 1st, 2010 at 1:59 pm
hi lisa,
did your autoimmune symptoms include hypothyroidism? and if so, has it since reversed?
I look forward to hearing from you.
Regards,
Ian
[Reply]
Sarah, I was diagnosed with AI (ulcerative colitis) three years ago – and I too have since gone on an amazing journey to get to know me again – and meditation, too, was key! (Meditation is an effortless, amazing, natural part of life for me now! So far removed from my previous life where “busy, busy”, “no time to stop” and “must be over-productive” were my mantras!) So much of what you have said resonates with me. I am so grateful to read your story – thank you so much for sharing.
Kindest regards, Elisa
[Reply]
Hi Sarah.
I have Hashi’s, for about 11 years, as well as CFS.
My Q to you, is , have you been able to get off the thyroid medication,
or do you find you still need to take the thyroxine etc?
I have improved over years, with both natural and medical support,
but I want to get off medication and to be able to manage naturally.
I am delighted to find your blog.
I read your Sunday Life column every week.
JulZi.
[Reply]
December 1st, 2010 at 2:01 pm
Hi JulZi,
I have the same question. Is it possible to get off the medication? Did Sarah reply to you?
Look forward to hearing from you.
Ian
[Reply]
December 2nd, 2010 at 9:43 pm
Hi Ian,
I didn’t get a reply from Sarah on that question. I take natural/ nutritional support as well as thyroid meds (T4 and T3) … but I really want to get off the meds. I’d love to hear if you have managed to as well. The endocrinologist I saw early on in the diagnosis told me I would need to remain on medication indefinitely and looked at me like I was nuts when I asked about the option of not doing that.
cheers,
JulZi
[Reply]
December 3rd, 2010 at 8:23 am
I was actually off my for an entire year after seeing a kinesiologist. Now take 50mcg which is more than enough for me, whereas before the kinesiologist I was on 125mcg and still hypothyroid. Even without medication now, my thyroid is only very borderline low, but I dont like to mess around too much with these things!
A lot of people think kinesiology is wacky hippy pseudo science, I know because I was one of them – my sister studies it and she started practising on me. That is the only way I would have known about it. Quite literally overnight things started to change, and within 3 months I was able to cut back on the medication.
My endocrinologist cant explain it, and I am usually loathe to share this story because people start ranting about how weird/fake alternative health is. However, I know that all my endocrinologist could offer me is the idea of pills for life, and I dont see how trying something different could hurt? It definitely worked for me, I would recommend anyone try it who was suffering thyroid disease.
December 3rd, 2010 at 11:11 am
Hi Julzi,
Thankyou for your reply. I have only been on the medication for two days so it is early days yet. I will keep you informed.
I was also interested to read Mia’s story and yes it is encouraging. Sounds like we all have an aversion to pills!
Ian
[...] doctor was impressed. How did I do it? It was a bunch of things, most of which I’ve documented on this blog…but if I had to narrow it down to One. Main. Factor. It would [...]
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[Reply]
[...] and obesity. I’ve been told my deficiency is contributing to my digestion problems, my thyroid issues, my calcium deficiency. Some are claiming it’s the biggest health challenge [...]
Mia,
I don’t think kinesiology is whacky at all. I’m very much into alternative health and healing therapies, and worked in natural health myself for years (in bodywork), but I still got CFS and thyroid disease. (I was doing too much in the two years before, and several consequetive stressful life experiences happened at the time). It was my health that got me into alternative health initially, when I was much younger, after chronic EBV- long stories…
Interesting, a lot of people I met in alternative health professional circles came to it through being unwell and getting nowhere with orthodox medicine. Not all, but a lot. (BTW I also now think orthodox med has it’s place and has helped me too, but it has limitations).
I have had some kinesiology sessions at various times, and found them to be great. But I haven’t got off meds. Maybe they missed something. Your post has me deciding to have some more sessions. It’s the money that gets me with treatments though. Everything costs so much and I haven’t been working because of health issues.
That’s great that you got down to the 50mcg. There is hope yet. Thanks for that encouragement.
Cheers,
JulZi.
[Reply]
I have received specialized training in handling the many cases of thyroid disorder symptoms from Best Selling Author, Dr. Datis Kharrazian, who wrote; “Why Do I Still Have Thyroid Symptoms? When My Lab Tests are Normal”. Attending and receiving certification at his Mastering the Thyroid program along with in-depth tutelage in Dr. Kharrazian’s methods of functional endocrinology, functional neurology, functional immunology, functional blood chemistry analysis and neurotransmitters and brain function afford me a special understanding of the relevant inter-relationships that can contribute to thyroid disorder symptoms. Indeed in many cases the causes of the various thyroid malfunction symptoms can be identified and corrected with a combination of specific supplementation, diet and lifestyle changes as well as Brain Based Therapy. Learn more at http://www.helpmychronicpain.com/Shelby-Township-Thyroid-Answers
[Reply]
Thankyou so much for your thoughts, I feel I am not alone. I began feeling unwell around 1989 and for approx 3 years i constantly kept saying to my doctor ‘something is wrong in my body’. He kept telling me I had a virus go home take panadol and rest. Well not an easy thing to follow when your trying to raise children on your own, have to work and keep house etc.. I went to visit my sister who I hadnt seen in years and couldnt believe what I saw, she had put on so much weight, had fatigue and could barely lift her arms and legs. Her husband had to do the housework mostly. She told me she had hashimotos and took a long while to find out. We talked and i realised maybe I had it to. Went home and booked in to see a lady doctor who was recommended after talking with her, telling her about my sister she tested me and bingo yes I had Hashimotos too.
Once I was replaced on the right dose of oroxine I started to feel a whole lot better. I remember once trying to read a book or a newspaper and get to the end of the article and didnt remember a word of what I had just read…(brain fog I think they call it). I remember trying to cross the busy road and feeling like I wasnt going to make it across in time before being run over or something..just no energy..it was horrible.
Ok that done thought wow put my life back on track..Then in 2004 after a fall I ended up having surgery on my back. 2007 another fall tore the tendons in my shoulder, more surgery..long painful recovery and physio…late 2oo7 started feeling fatigue, soreness, trouble standing, walking and generally unwell… my arms and legs were paining and sore to touch. the slighest knock against me or my grandchildren even sitting on my legs was excrutiating. My physio commented that something was wrong she couldnt get the muscles to release. I had acupuncture to no effect.. ASked the GP after many weeks of this if I could see a specialist , sent me to a rhematologist…thank god for ‘Mano’ what a wonderful man…just him lightly touching me on the arms , neck, back and legs hurt so much. Told me blood tests dont show up anything but purely clinical diagnosis would be done…. possibilities were spondylarthritis, psioratic arthritis, fybromyalgia etc….thats a starting point he said… so after a couple of visits and keeping a diary of my symptoms and days a clinical diagnosis of psioratic athritis and fybromyalgia combined to make me feel this way.
I rarely drive my car these days..i have periods that come over me quite suddenly of fatigue and I just have to go to sleep, sometimes for 20 minutes sometimes for hours. a trip to the shops for half an hour or so results in me having to go to bed for the afternoon. I cant walk for more than abut an hour these days…I have learnt a long the way to do a small task every day…one day i do the vacumming, one day i do the washing and peg out, one day i mop the floors, one day i change and make the bed…
my whole lifestyle has changed…
I am on antidepressent ..the rheumatologist said they have found that these can be used for other things than depression..small dose only…he has given me but it helps me cope. i take predisolone now as the pain and soreness got so bad particularly in my arms that I couldnt even lift a glass of water, a bowl, a plate of food, the kettle etc my whole arm would shake.
I take oroxine for the hashimotos…
I take panadol osteo for the arthritis pain
and at night I am on a strong pain killer my doctor has to get an authority to prescribe for me. Otherwise I cant sleep.
I hate taking medication, but its a necessary evil these days.
Family History:. I am one of eight children. We lost our parents when we were young.. No family history is known which makes it hard…
The family problems in order of children are numbered below.
1. Diane – Type 2 diabetes, Osteoarthritis
2. Marilyn – Arthritis
3. Robyn. – Psioratic Arthritis, Hashimotos, enlarged heart, Sjorgens disease, Liver problem
4. Robert (dec) died of sarcoidosis
5. Me – Hashimotos, type 2 diabetes, psioratic arthritis, fybromyalgia,irritable bowel/diverticulitis, high blood pressure
6. Graeme – myathenia gravis
7. Michael – Hashimotos, Crohns, Stomach ulcer, heart problem
8. Greg – Back problems only – no sign of the illnesses yet the rest of us have
all this in one family ..my sisters heart specialist cannot belive such a strong present of autoimmune illnesses in one family..never seen it before.
but hey there are people worse off I am sure…I have days when I sit and cry with the chronic pain but I do have better days not good ones like i once had ….but better days when I can actually do things.
chrissy
[Reply]
July 4th, 2011 at 6:21 pm
You poor darling! Thinking of you XX
[Reply]
Hi Sarah,
I was interested to read your comment after you started meditation you found “that my hormones levels (previously depleted to zip) have returned to normal”
May I ask, are you referring to the hormones produced in the thyroid or other hormones. If you are not referring to thyroid hormones, what impact has the meditation had on your thyroid hormones (if that is the right word..) eg. TSH, T2, T4 etc.
Look forward to hearing from you.
Ian
[Reply]
Hi Sarah,
My hypothyroidism seems similar to your with TSH 60 and T4 under 0.05 so basicly barely functioning. You are one of the only people I have found that has a burning mouth/lips from time to time. I suffer on and off from this too sometimes for days on end, you mention that certain food stuffs can trigger this for you – what are they? I have so far not found any pattern to mine but this might help.
Great website
Many Thanks
Sheila
[Reply]
[...] This one – healing auto immune disease: from someone who’s been there – continues to attract thoughts and ideas and share-ins. It’s my original rundown of [...]
Hi Sarah
I have only had time to read this post, but look forward to reading the rest of your related posts. I have severe eczema, and I recognise your journey… ezcema is another disease which has the ability to knock the strongest and seemingly healthiest of people flat. There are varying causes, and just when you think you’ve figured it out, everything changes and you’re back where you started. I’ve tried GPs, dermatologists, natural therapists, diets, atopic solutions, online searches, and hormonal trials… the search continues!
Thank you for writing so honestly about your AI, but also for writing so positively. Often these topics are approached in a way that leaves you feeling helpless and sad. I have to say you’ve inspired me to keep going, be more diligant in my findings, and you’v that no matter how rotten some days can be, it could always be worse…
Cheers!
Ems x
[Reply]
Hi Sarah
I’ve just been my physio and he told me that his wife heard you speak about AI. I am just coming out of another painful relapse of Crohn’s disease. I felt better when I read your story. Not so alone I guess.I also have Diverticulitus so whilst I need fibre in one area of the colon it really is not good for another. I wanted to ask if you have heard of the Specific Carbohydrate Diet. I am pretty down at the moment and need to be proactive
[Reply]
sarah…before you were diagnosed did you feel flat, dull, morbid and that you could just not bear to spend another day feeling like this? i just want to cry at how dull i have become….i have not yet been diagnosed but i am pretty certian i have AI as my mother has hashimotos and the past two years are increasingly unbearable. i have been sent to three specialists who all agree it’s not in my head but i am a mystery due to the test results. i left work 3 months ago so i can concentrate on getting on top and getting a diagnosis – i work on my 100 year old house on the good days and potter on the bad days and the terrible days i stay in bed!! it’s frustating when the mind is willing but the flesh is not.
[Reply]
Interesting post and a very personal one. It was good to hear your take on thyroid disease and your symptoms.
Personally, I was diagnosed with Hashimoto’s at 23, though it had been present for a lot longer than that. And I don’t believe it was due to any lifestyle factors but rather heredity (my paternal grandmother has it). I take thyroxine every day now and I lost 18kg in the first six months of taking it. Now I don’t really pay it any attention, except as an excuse not to eat soy.
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Wow!! I stumbled across this site while looking for “soy free” breads. It’s so great to read something written by someone here in Australia as normally it’s articles by people in America. Thank you for sharing your Hashi’s experience as i can totally relate. It took me 9 yrs for someone to take me seriously and believe me when i felt like i was falling apart. If it wasn’t for the net and healthboards, i believe i still would be struggling to get help. Instead, i learnt from others, then found myself a Trichologist to find answers on my hair shedding. The Trichologist discovered i had the Hashi’s, whilst GP’s and an Endo told me my thyroid was “fine”.
I know any number of things can lead to Hashi’s, but i tend to agree totally with your article, but the bit i agree on the most is how AI diseases appear to hit those who strive so hard, expect 100% of themselves (yet not of those around them) and we are usually not quiters, even if it’s going to kill us. This lifestyle isn’t good for our digestion, hormones and our adrenals, which in turn affect our thyroid hormones. One viscious cycle.
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Having just read this week’s Sunday Life article the sentence ‘ I know I got sick a while back to learn humility’ made me stop and look for your website. Thanks for telling your story here. I’ll be showing my husband to help him understand the journey I’ve been on the past couple of years. I certainly am no follower of new age thoughts or touchy feely views of wellness and caring for myself. I LIKE being very busy. I like being able to cope. But, I have had to stop, and take a totally different perspective on my world, which is meaning I am saying no and I am taking a little more care – just a little – baby steps. Thanks!
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[...] Bam! I ground to a halt and couldn’t walk for several months. I’ve written about this before. Quelle irony, hey! Our bodies do this. They teach us the perfect lessons we need right now. My [...]
Sarah, thanks so much for sharing your ongoing journey. It has really hit home for me. I’ve had Grave’s Disease (hyperactive thyroid) for the past five years and it’s been a real roller coaster. Usually hyperactive sufferers lose masses of weight and find it hard to put weight on. I’m one of the 20% who gain weight. After only a few months I had gained an extra 15kg. Mid last year I had such a bad toxic overload from the disease I had to stop work for 2 months. Then taking up the advice of my specialist to take the radio-active iodine treatment to ablate my thyroid. Felt fantastic afterwards for a couple of months but now it is all flaring up again. I’m at my wits end. So I’m heeding your advice to be kind to myself and start looking at alternative solutions. To start working on the underlying problem which is AI.
Your theory of A-type people who drive themselves hard being more likely to suffer at some point with AI is very interesting. I’m one of those people and whenever my health has stabilised over the past five years I’ve gone full force into exercise. I love to run, do weights and push myself physically. Then I’d crash and burn again. So your theory rings very true for me. I need to start taking things slower and more gently. There’s much I need to learn and I can see that my journey to a new way of living is only just beginning. Thanks so much for your advice and the links to others who I can also learn from. Good luck with your journey.
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Thanks Sarah.
I have had this for 6 years. And have slowly made me better. It is a hard road, as we need to re learn so much. Thanks for your time in writing this.
It is good, really good. And in just knowing you had it, and grow with it, is nice.
Steve
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Thank you so much for this post. You have said so poignantly what I wish I could say to people. My journey was much like yours, and I am slowly healing. The key word being slow.
Thanks so much.
I will continue to follow your blog!
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What an inspiring post especially for those of us who might feel alone in suffering from this sometimes isolating condition. Not just because the physical symptoms can sometimes be hard for others to believe but the psychological impact is just as tiring. You have put your journalist investigative talents to good use and will surely help thousands of others out there struggling with a myriad of inexplicable symptoms. I was wondering if Wilson’s syndrome could be a possibility as usually adrenal fatigue/failure and thyroid problems go hand in hand?
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Hi Sarah
I’m so glad I have found your blog. We seem to have gone through some very similar experiences which has also led me to changing the way I do things. I feel that what I have gone through is such a blessing and I have now started writing about it myself. Like you I feel the need to share and get my message out there as to inspire people on their own journey to health. There is no one cure fixes all or no one diet or no one rule – it is all about the journey and each piece comes into our lives at exactly the right time. I love that I’m finding all new resources throughout your blog that will continue to help me on my journey as I believe it is never over. Thank you x
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March 13th, 2011 at 9:30 pm
Couldn’t have said it better…x
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Hi Sarah,
My girlfriend, E came across your blog and immediately thought of fellow-auto-immune sufferer, yours truly. I want to thank you, just as I thank E for reminding me that my health is more important than anything else plus I should keep working on readjusting my lifestyle – my boyfriend is also pleased. Thank you.
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Have you looked into the paleo diet? http://paleodietlifestyle.com/
http://thepaleodiet.com/about/
The Paleo Diet the world’s healthiest diet, is based on the simple understanding that the best human diet is the one to which we are best genetically adapted. It is supported by documented scientific evidence and by real-life improvements, even triumphs, of people winning their personal health battles.
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Hi Sarah,
This is a fantastic post, such informative and educational discussion! I’m a fellow IIN’er : ) and have a couple of clients with Hashimotos that I’ve forwarded your post onto and I’m sure will give them inspiration and confidence in taking responsibility for their health.
Have you actually cured yourself of Hashimotos or are you managing your symptoms? I understand it’s probably a long healing process and may take years. What supplements and foods have been key for you?
Thank you & for making this such a positive and public discussion!
Warmly, Kate
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Divert ease me to beget pool
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Hi Sarah,
I just wanted to thank you for sharing all this stuff. It is so very heartening to hear that you’re not the only one that knows what it is to feel these symptoms! I was diagnosed with CFS about 7 months ago, and have been on the journey of ‘discovery’ and listening to my body – a completely new experience. My neck aches from nodding so much throughout your post…I love your suggestions and I am going to try to implement a few and see how they suit me.
I have only really discovered that sleep, (much) less excercise, meditation and no gluten or dairy are winners for me. I too was a ‘two speed’ person, excercise fan, workaholic, nothing-less-than-perfect-is-good-enough, allocating too much of my time-pie for everyone else and leaving nothing for me…or feeling guilty when I did. I too feel lucky to have been ‘stopped’ by this condition to check myself, and the way I was living my life…and listen to the little whispers from within
Thank you and congratulations on being such an inspiration to clearly so many people.
Emma
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May 31st, 2011 at 7:22 pm
Hi Sarah & Emma,
Emma – I have tapped directly into your post because I too am a CFS sufferer. I was diagnosed 2 years ago and congratulate you for finding such a positive headspace in such a short time. It took me a while to process and find peace with this condition but once I did the journey, while still difficult, has brought many gifts … I used to race through life thinking I was doing all the right things for myself and yet here I was asking my mind and body to take on the world. My whole outlook was forced to shift but this feels like the real me now. While my days still involve one step at a time, and I haven’t been able to work since my diagnosis, my body is stronger and we are becoming friends
. I wish you all the best with your ‘journey of discovery’ – while incredibly confronting at the start it can become ridiculously clichéd and beautiful!
Sarah – I grabbed a hold of your story and strength while in the throes of my initial dark place 2 years ago. You helped me connect with my condition, my options and my true self. Thank you for being such an inspiration and sharing your journey … actually I nearly feel like I should apologise for not thanking you earlier!!
One last thing that you may both be interested in … assuming you haven’t found it already … is a Chinese philosophy called Qigong. It is a beautiful energy healing practice. My body really started to turn a corner once I included it in my new recipe for life.
Nicky x
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May 31st, 2011 at 8:23 pm
Hi Nicki,
Great to hear that my little comment has helped and given you some positivity – it’s amazing how much difference hearing similar stories and positive takes on things can make.
I completely agree, it really is a very different journey to get used to but I do feel lucky in a funny way that I’ve discovered this new way of life – one that is kind to my body! I’m so sorry to hear that you haven’t been able to work, and I sincerely hope that your steady progress continues so that you are able to work again soon.
I think I was very lucky to catch the condition so early that my progress has been relatively fast, though I’m still not able to excercise or really have much of a social life, but thankfully I can work, though have been very lucky to find a job working from home which allows for some flexibility for naps on bad days
I have been working with Chinese herbal medicine and I have found it to be really effective, I shall certainly look into Qigong. I can highly recommend Isabel Peace practitioner (chinese medicine and acupuncture) at Your Health in Manly if you’re local to Sydney.
I wish you all the luck, light and energy for your recovery and thanks for your reply – I think every little bit of support we all receive helps us to be positive and get better xx
Sarah, thanks again for posting something so thought provoking, personal and helpful for so many people, and I hope you’re feeling tip-top currently
xx
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May 31st, 2011 at 9:40 pm
Thanks so much for the recommendation of Isabel Peace Emma. I have heard that Your Health in Manly is great. Unfortunately I’m not local to Sydney anymore – part of my challenge. I had to move home, to country NSW, when I was diagnosed – it was also a blessing for the early stages of my recovery. But I’ll definitely look into her.
The Qigong Master that I work with is also a Chinese herbalist. A wonderful, beautiful man. You feel better just being around him due to his nurturing energy
. He’s based in Chatswood – google Tiandi Qigong to read a little more about him if you’re keen. While it is a lifestyle adaptation it’s also a very gentle practice similar to thai chi – perhaps it would be ideal for you if you’re not able to exercise much. I love it and my ability to exercise it really limited.
I’m so pleased that you were able to recognise the red flags early on and you have some flexibility with your working day. Yay you
… hopefully your social life re-emerges with time.
Thanks for your reply and words of support. I completely agree with regard to hearing similar stories. While you don’t want other people to be struggling you hope that they find the same light, reason and clarity for why their body has spoken up.
Take care – sending you lots of healing thoughts & energy x
Hi all
I am interested in this topic and what worked for others in dealing with my own condition. I have a rare AI condition called “Mucous Membrane Pemphigoid”. It’s a kind of blistering disease, where big, red painful blisters erupt in the mouth, eyes, genitals, nose, esophagus. Like most AI’s there’s no known treatment except topical cortisone, and, if severe, immunosuppressant drugs. My illness, fortunately, has not progressed past oral blisters–that is, I have not had any in my eyes, or “down there” or in my throat. That said, when I get them, they can make it almost impossible to eat.
I was curious about Sarah’s and other’s experience because I suppose all AI diseases could come from, or at least be made worse by, our lifestyle choices etc, and I wondered if there was any one underlying theory behind them.
My biggest problem is I am addicted to non-sugar sweeteners, particularly stevia and saccharine, and use them a lot. (ok, much, too much). Other than that, my diet is virtually grain-free, low fat (I don’t have a gall bladder anymore, so I can’t digest much in the way of fat), and I also have very sensitive blood sugar, so it’s low in carbs all round. I drink one coffee a day and I confess, wine every night. Other than that, my diet is packed with vegetables and protein.
I’m interested to hear if anyone things all AI’s have similar origins and could be treated similarly.
thank you
cheers
Donna
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Sarah,
Like all before me ‘thank you’ for sharing so freely, candidly and honestly. It is with a lump in my throat that I write this comment as I don’t feel so alone anymore. Reading everyone else’s comments along with your post makes me feel less ‘crappy’ and confirms that ‘it’s not all in my head’. For so many years I’ve fought my body and hated it for what it wouldn’t let me do. I now realise I need to learn to love it and be patient with it. It is hard though at times when you’re considered “the difficult one”, the “fussy eater”, or “the always tired” one. I even have friend’s who think I am this way to be trendy! Apparently paying $8 for a loaf of bread is somehow trendy!
I’m still confirming why exactly my body is this way, through an endless amount of tests and dead-ends that leave you questioning ‘is it really all in my head?’ Hence why I was so relieved to find your blog and read your posts re: AI. You give me hope that I may still find the answers to all the questions my body leaves me asking. And more so, showing me I’m certainly not alone feeling this way.
To health & wellbeing! xo
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A couple of tests that are very helpful are Enterolab #11 which is a gene test to see if you have the genes (HLA-DQB1) that predispose you to gluten sensitivity and celiac disease. In addition Cyrex Labs Array #3 is very helpful. You can react to over 15 components of wheat and this test measures them all. These tests (and others) allow me to quickly discover the triggers to my patients autoimmune conditions.
Keep loving your body and learn as much as you can. Diet and lifestyle changes and specific nutritional supplementation can help your immune system get back into balance.
Yours for Vibrant Health and Prosperity
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Hi Sarah,
Excellent read. Thanks for sharing your journey.
I was diagnosed with Hyperthyroidism and Graves in 2008. I worked with meds, natural hormones, diet, meditation and myself. All my levels got to “normal” so I thought I was okay. Then of course… I ignored “it” and within 6 months am back to square one.
Healing will come when – and as – you learn to be kinder and gentler to yourself.
These words from you brought tears. This is where I need to focus more it seems.
Many thanks,
Sheree
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The BIGGEST key in any autoimmune process is to come to an understanding that the end organ being targeted (thyroid for Hashi and Grave’s) isn’t the real problem. Rather the out of balance immune system and WHAT is triggering the immune system to be out of balance IS the real culprit that must be handled to get back into a healing mode. To get the immune system into balance, specialized testing is needed to root out the triggers causing issues and then diet and lifestyle changes along with targeted nutritional supplementation is required too. I am dealing with AI attack on my body as well and I specialize in helping others too – and since I am in the journey – knowing what works is a great advantage. Keep up the great work!
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Hi Sarah. i have a year ago heavy headache, i think it worst, headache can be blockade of circulation of blood to the head and neck. I say aways, Doctor Can you fix me up? , No! It’s so worst, My doctor says that I need glasses. I know there is more wrong in my neck.
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I was diagnosed with Hashimoto’s last November, but realise that I have had this condition or at least it was developing for some years previously. I spent months of late nights trying to find what seemed like the most logical explanation and way to help it. That led me to the GAPS diet, which I began to try out from last November. I am now following it in a more serious way; it is actually a gut detoxification, seeding and refeeding programme that takes quite some work to implement, especially in the beginning. However, it has certainly put paid to all my most serious and handicapping symptoms fairly quickly (permanent anal fissure that was so painful I could hardly get out of bed or move any more, total exhaustion, increasing no of allergies to all sorts of things, acute hayfever, problems sleeping). I am now slowly working through the intriacies of the programme (2 years or so recommended time). I have to say I am feeling pretty good on it already though, lots of energy and the anal fissure, which even an operation could not fix, seems well and truly gone. I sleep very well and allergies are reducing. Well, at the least I would recommend reading the book by Dr. Natasha Campbell McBride. She based her research for this on her search for a cure for her son’s autism, but found the diet very suited for people with autoimmune disease. The book is a result of her research and makes for very fascinating reading. It certainly put so many pieces of the puzzle into the right place for me. Good luck to everyone seeking help for this horrible condition.
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Hello Sarah,
This morning, I found your blog. This is a wonderful post; I haven’t the time to read through all of the great comments so may be repeating points
How kind of you to share your journey! One thing that stood out to me is: “OK, so why did I get AI? … I got AI because I needed to.” How conscious! Although I can’t imagine your challenges, I can empathize with that thought. About 25 years ago, I was going full-tilt boogie (it was insane!) – then one day, I broke my leg. What should have been a minor accident shattered my fibula & ankle and snapped my tibia in half. I almost lost my lower leg. A gifted doctor, three surgeries, titanium plates and pins, eight months in casts, and years in rehab and I’m cycling and snowboarding. I’m left with some pain, a scar and awareness. It took me a while but I too realized I ‘needed’ this to happen. A rather dramatic push off of the path I was taking – but it worked.
My dearest friend suffered with AI for years before she was diagnosed – I’ve watched her challenged and frustrated by it (and will be sending your blog to her).
Your insights into diet and healing are brilliant – I’m working toward gluten-, dairy-, and meat-free and the clean energy already is amazing (still working on the ‘must sleep more’ … I allow myself naps, too).
Sarah – thank you for such an intimate glimpse into your life – very much appreciated and I send you my best. I’ll be following your thoughts! – peace
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Thank you, thank YOU for this post. I’ve jus tbeen diagnosed with hypothyroidism and it’s a whole new world. Luckily, I’m a yoga teacher and so yoga and meditation are already a part of my life, and it doesn’t sound like the changes I’ll have to make will be that radical for me. However, it’s wonderful to have advice that works from someone who’s been through it all.
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great blog. As an AI sufferer its funny that you say what you did – since of all people a psychic told me that I developed an AI so I could slow down and examine what I was doing and where I was headed…
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[...] and TV personality Sarah Wilson who believes going gluten free has helped enormously with your auto immune disease and doggy [...]
[...] and TV personality Sarah Wilson who believes going gluten free has helped enormously with your auto immune disease and doggy [...]
Just want to put in a word here for Multiple Sclerosis and the tens of thousands of Australian women and men who have it.
It is an autoimmune disorder, as well as a demyelinating one.
The total number of people with MS in Australia alone is over 20,000. Those who are diagnosed.
Diagnosis is very difficult – there is no way of diagnosing MS. It is called “Diagnosis By Exclusion NBE (No Better Explanation)”. True!
Three out of every four people diagnosed are women.
The incidence increases by 7% each year.
The total financial cost annually is close to $2 billion dollars.
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Um, I’m new here. But can I just say, I LOVE YOU! I only just met you, but I already know I love you.
Thank you for sharing this. I myself had to change my ways to figure out how to heal myself from my own hormonal imbalance nightmare. I’m battling hypothyroidism, insulin resistance, and poly-cystic ovary syndrome (all this hormonal deficient crap goes hand in hand!). I’m doing much better now, but as you know, health is not really about arriving at a destination or crossing a finish line. Wellness is an ongoing process, a “journey” as they say
I’m glad to have found you along my path.
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May 27th, 2011 at 12:24 pm
A common denominator for hypothyroidism, PCOS and insulin resistance is gluten sensitivity with concomitant excessive carbohydrate intake. The increased insulin and cortisol affects the 17,20 lyase enzymes in the ovaries which in turn over-convert estrogen into testosterone.
Success strategy: Eat vegetables, protein and stone fruits (those with pits) and certain specific nutrients to reduce immune system dysregulation such as omega 3 fatty acids, vitamin D3 among others.
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Reading everyone’s posts makes me realise how much our crazy lifestyle in this modern world really wreaks havoc on our immune systems and that western medicine’s treatment principles are flawed.
four years ago my broken immune system crashed and systemic candida took over due to my lifestyle that is so common to everyone, acidic foods, alcohol, coffee, dairy, wheat, one too many parites, and one too many rounds of anti-biotics and prescription drugs.
i started getting brain-fog, insomnia, digestive disorders, every bug going round i got, thrush, depression, irregular periods, no energy, dizziness, the list goes on.
it took many months of visits to my GP getting mis-diagnosed and more scripts written before they finally did a test for systemic candida.
then more rounds of scripts that made me feel worse – no mention of diet or lifestyle by the GP either.
after 3 months it dawned on me there was no point in going to see a GP!
so i began my journey of research – thank god for the web! and seeing naturopaths. what really worked for me and i’m sure would help many AI sufferers was mega-doses of vitamin c infusions 3 x a week (18g – 30g), vitamin b shots – VitaCentre in Edgecliff provide this awesome treatment along with chelation (heavy metal detox), mega-doses of pro-biotis (up to 500 billion), colonics, acupuncture, an alkalising diet, garlic, coconut oil, alkaline water, apple cider vinegar, fermented supergreens and lacto fermented vegetables – see donna gates body ecology diet on the web. also food combining principles worked well for me too – no grains with proteins and grains should only be quinoa, buckwheat or millet.
follow the 80/20 rule on the plate – 80% veges, 20% protein.
and some good quality supplements such as fish oil, multi, adrenal support, calcium and magnesium.
oh and rest, yoga, walks by the beach. i used to be such a gym junkie but as we’ve all learnt, high impact exericse just adds more stress to our already fragile bodies.
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Hi Sarah
Thanks for sharing your story; it was great to see you at the Happiness and its causes session in Brisbane last week it was great to have someone like you hosting as it spoke volumes; I’ve started reading all of your blogs etc and feeling inspired and motivated.
I wonder if you have seen the but you don’t look sick site? if not the link is below. It goes to the spoon theory which has helped many of my friends and family understand greatly what I go through; we often speak of spoons now and it makes me feel even more support than before.
the changes we face with invisible diseases are different to those who can show how they hurt. I think Christine’s site helps communicate the issues well.
anyway I’m sure you have more than enough reading to do on a daily basis i thought perhaps you would see this and share with others who might benefit.
all the best; Libby
http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/
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May I kindly suggest that you are not grateful for the illness itself; that you are grateful for being in the position to maintain your lifestyle through an already established flexible career, rather than end up losing your house, your income, being dependant on a meagre pension, or worse, the dole, and possibly abusive family/ partners. That you are grateful to be able to afford alternative health therapies and expensive diets, rather than a lack of energy, time and finances, and the extra stress spirally your health further down. That you are grateful to live in a time where your particular illness is picked up quickly and easily by simple blood tests, and not misdiagnosed as neurasthenia or hysteria as it would be 100 years ago, or misdiagnosed as mental illness, or completely dismissed, as happens now. That you are grateful to have no dependants or family who rely on you and are worse off for your ill health. May I kindly request a modicum of sensitivity for those who are not able to embrace their illness as a lifestyle change, and a lend of your position of influence to prevent, cure disease (toxins, research etc.) and decry how those with illness are treated…
Or not, you’re the sick one. You’re one lucky gal, you’ve been taken down by a terrible illness in the prime of your life but with resources not available to most of us. I do admire your attitude, thanks for the blog. P.S. I’m hoping to get less narky upon practising meditation and other suggestions.
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I suffered from chronic fatigue syndrome for 6+ years. I can so relate to this post and everything you’ve written in it. It is a privileged position in some way, for your body to go haywire to the extent that you can actually feel what our lifestyles are doing to us. I will never, ever forget what it all felt like, and it’s made me so much more careful to care for myself, and for our earth. So many of the things you have discovered healthful and healing and helpful have also been for me (I think I’d rate meditation as number one as well. And oh, how deep everything goes when you slow down!
Bless ya, Sarah. May you continue to improve
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Alle 3D bedrijven in Nederland overzichtelijk 3d-bedrijven.nl is de website met een volledig en actueel overzicht van 3D gerelateerde bedrijven binnen Nederland
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Hi Sarah,
Thank you for sharing your story and suggestions. I also have been diagnosed with Hashimoto 6 years ago.
I have been on a roller for the last 5 years. I find the following very helpful;
* Vegan diet (free from meat and dairy = allergies)
* Gluten free diet
* No coffee or coke
* No processed foods
* No strong chemicals at home
* Alkalising water
* Fresh organic foods
* Massage 1x week
* Yoga 1x week
* Walking 2x week
* Pure water (Fluoride & chlorine free)
* Corrrect Breathing technique
All the best to fellow sufferers….
x Sarah
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Watch hard video sex
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I follow your website for a time. I can say your verry active With this blog. I will visit your website again for real! Thanks
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WELL! What a wonderful surprise to find you so down to earth and open, Sarah. And I’m shocked to see so many young ones are sharing these Hashimoto symptoms that I’ve discovered in myself only these last six months or so, and I’m 65. I’m pretty healthy. No friends or family could understand why I was “so crook”, let alone myself, and I have to say that my hair loss (dry, lost its curl as well as fallout), loss of public hair and underarms!!!, together with brain fog is what drove me to the docs. Vanity always wins, my daughter reckons. One doc said hyper, the other said hypo so I went to my friend who is a natural hygienist in Sydney (Arcadia Health Clinic), who suggested I was on the verge of serious automimmune disease. I fasted under care at the clinic (i.e. detoxing), learned about my chronic stress and adrenal overdosing, and have been putting off the thyroxine prescription for now five months. I was fortunate to find a doctor prepared to give me acupuncture, but he still wants me to take the thyroxine. Like you Sarah, my first TSH test count was 84, and as soon as I started eating fruit and veges again, supported with fish and seaweed it went down to 72. (In four weeks). Since my fast however I’ve had two blood tests both in the 90s. Obviously not enough meditation, exercise and that vital sun (Vit D). Am addressing these at the moment and hopefully I can get into some good regimes before another test, and that that will prove the case.
However I am pleased to read from your bloggers that it is possible to help the T3 to T4 conversion (or is it T4 to T3?) You can see a bit of brain fog here at the end of the day and a too-busy week. So that’s another experiment to explore.
Thank you all.
It’s a relief to hear you, read you and discover there are real people on the planet really aware of how much lifestyle and food affects our body/mind/beings.
In the love that lives us, with my dancing shoes now on,
Thanks
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I am SOOOOO glad to have found your blog. I am a fellow blogger, with dreams of writing SOMETHING someday that gets published. Your path and mind sound SO eerily similar, its uncanny. I will definitely be following you and learning from your bumpy path because I too, tend to go the hard way first. Thank you. Thank you so much for sharing your life and experiences.
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Orange Gevelrenovatie richt zich op gevelrenovatie, gevelreiniging en gevelonderhoud aan woningen en bedrijfspanden. Wij zijn gespecialiseerd in particuliere projecten, maar ook hoofdaannemers behoren tot onze klanten
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im confused about claire hoopers bit? where is it?
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[...] my hormonal fluctuations. But stories like Andrea’s inspire me. As you might know, I believe my thyroid disease is a symptom of the way I lived for a long time. I damaged my body with my previous lifestyle habits. Ergo, I believe, I can fix it with better [...]
Just wanted to say:
Respect!
Minilening
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Hi Sarah,
I just read an article in a Gold Coast magazine while up here on holiday (resting!) You write so well. I have battled a similar journey/self discovery and now on the other side I am much happier and healthier as a result. It’s really wonderful to read of your journey and know that there is a community of people that understand. Makes the journey less lonely.
Also, spiritually I feel that if we all nurtured ourselves better (loved ourselves) then energetically there would be more love in the world. More love of Mother Nature, one another, communities etc. You are a leader in the general notion of love!
Keep looking after yourself,
Mel
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I’m totally in shock. I’ve been thinking I’ve been a little bit crazy all these years. Diagnosed in 2000 – no one I’ve seen to date has given me as much information as I’ve just read in this post. Thank you.
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Hi Sarah,
I am regular reader of your articles in Sunday Life, and it’s the only article which I read on the weekends with busy schedule. So I have been a fan of you and today I have come across your blog with the topic on the AID.
Thank you for shearing your Tyroid malfunction experience with the rest of us.
I have been suspicious on my thyroid function for 14 years and only 2 months ago I have been diagnosed with auto immune thyroids. So lately I have read a lot on the net about diets and other people experiences.
I am now of sugar & gluten free diet and regular taking thyroxine supplement.
The main reason I am writing to you is the method I have been exposed to come this diagnosis was with CEM(complementary & ecological medicine) with Pauline Rose (Crows nest). They use a “Physiospect” which analyzes the functional state of organs and tissues in order to discover physiological disorders and to define the characteristics of pathology.
I highly recommend this service to people in need.
Take care
Elizabet
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HI Sarah, thank you!!
I just read up on your blog about underactive Thyroid. That’s me I have finally hit the brick wall as such and am finally starting to relax and be kind to myself! I love your note to yourself about being nice to you because I am finally realizing I need to be kinder and not exercise 100% intensity 6 days a week.
Thanks again, now its time to get on track!
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I just read your blog and can’t believe the similarities between the triggers of your AI disease & and mine. I have ulcerative colitis. My eyebrows even stopped growing too. One of mine, the outer third disappeared. Freaky coincidence or AI symptom? Also I have many inflamed days. Oh, I also get chronic sinusitis & psoriasis. Lots of inflammation you see. It manifests itself a lot thru my skin & nose. Anyway I’ve had colitis since I was 26 y.o, I am know 41. Prior to that since 19 I had Irritable bowel syndrome. Good news is with conventional medicine, anti inflammatory meds that is and herbal medicine I have stunned my gastroenterologist. I did a 2 mth liver cleanse. By taking the sandra Cabot tablets and eating lots of liver friendly foods. I wasn’t strict about it though. Plus I regularly drank dandelion leaf tea ( a liver tonic). I take turmeric capsules, which are anti inflammatory. I also take fish oil caps. In the past I have used aloe Vera juice also. I think the combination of these, but especially cleaning my liver, made a difference. I also changed my diet. I removed dairy, wheat as much as possible. I don’t bloat anymore. I don’t have coeliacs, but am lactose intolerant. When I eat casseroles with tomato paste I get really acidy & get sick. That sucks when u have a Greek heritage! Anyway I never sleep enough, which explains why my cells don’t repair properly. My psoriasis is the first thing to flair up, then my nose, then my gut. Back to my specialist. When I had a colonoscopy in June this year, he told me that he had to rethink my diagnosis, because my colitis had improved dramatically. Only the last 10cm of my large intestine showed scarring
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I accidentally pressed enter before I had a chance to tell you that the rest of my previously scarred intestine had healed & showed no signs of scarring. This is what stunned my doctor. Anyway thank you for validating my symptoms as AI symptoms. And for giving me extra tips, like the food & sleep-cell repair therapy. Great blog!
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My, I wish I had found you years ago. I have crohns and it took a decade to diagnose. The clean eating us a struggle because of my issues with fiber. I’d love to know your take on that. I’ll be back and reading more. Thank you!!! Heather
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hi sarah, i found reading this very interesting, i have hoshi and have had it for 12 yrs os or more i also have about 4 more auto immune diseases and one they cant figure out it absalutely hard but as for weight you guys can lose it 33 kilos in 8 months kate morgan highly recommend it its eassy and they told me i couldnt lose weight and the vitamins in it make you feel better .
all the best guys
tammy
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Hi there
I have had Hashimoto’s for about 10-12 years and in the last 3 years have developed chronic urticaria. I scratch myself so badly I bleed, constantly, but can’t stop. The itch is like the sting from millions of mosquito bites all in one small patch.
Recently small lumps have developed on my neck.
I’m tired, but can’t sleep, miserable, can’t concentrate very long, very very forgetful, and lacking any libido whatsoever.
I’ve always thought that I will have to heal thyself!! because the GPs, as you say, think it’s all too hard so they give you more tablets, in this case anti histamines (taking 4-6 telfast per day- and still not working!). Allergy specialist now advises to go on an elmination diet, eating meat, lettuce, celery, shallots, and a few other things, then gradually introduce other food groups.
However, it’s nice to know there are other people out there with the same problems, or similar, all from thyroid disease. A Qld naturophath/therapist said he has never known so many women to have thryoid disease. What’s causing it? The go-go-go lifestyle fits, but doesn’t effect everyone.
Sorry I’m rambling.
Thanks for your website, I feel a bit more inspired!!!!
Trish
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