OK, it’s been a while since I’ve done an auto-immune post (for those new here, you can find the backlog of AI posts here). But I’m going to start up a bit of a series again. For reasons I feel it’s worth explaining.
photo via Colin Hill flickr
NOTE: For anyone who DOESN’T have an AI…
1. be damn glad
2. you’ll still very much find these posts helpful.
Any tips that help an AI disease are tips that go to the absolute heart of good health and top living.
What I share is only good, fundamental, well, ways to live the good, good life.
3. feel free to forward this link to a friend who does have an AI. I think they’ll like you more for it.
So, my update. My hashimotos has gone a little haywire over the past few months. As a result I’ve had to pull back on a few commitments (you might have noticed…my book, my column) and I’ve been digging deeper into some of the craziness going on, trying out some new techniques, like going paleo and talking to folk like Chris Kresser and Nora Gedgaudas. I’m starting to get some traction in my understanding if not my health.
I know some of you have asked: how BAD do you actually get. You’re not being rude. My friends and family have to ask the same because when I’m BAD, I go M.I.A. So they don’t really see thyroidy me. It’s hard for them to get it. I kind of exit stage left when I’m BAD, not so much due to shame (tho’ that does have a bit to do with it), but because when I’m “thyroidy” I simply can’t face the world. Dark, cool rooms. Not moving. That’s pretty much the spectrum.
On days like this I revert to this intentional resting technique.
When I made the decision to pull back and recalibrate a few months ago I was unable to function 4-5 days a week. It had been about one day a fortnight previously – which I could deal with. But the uggggh days crept up on me. I almost didn’t notice. Until I did.
Unable to function? Alright. Unable to walk down from my bedroom (the light, the noise…and my legs and heart struggle to carry me), unable to sleep (because my head buzzes), unable to go to the toilet (and I mean EVER…like nothing at all…too much information???? …oh well).
I ache. I get foggy of head. Talking on the phone…even thinking about talking on the phone…hurts to my very core. My limbs get all puffed up, and my face. And everything burns. My period has stopped. My skin breaks out. I fall over a lot.
Imagine the worst hangover you’ve ever had. Double it. Add in PMT. And a head cold. And that’s almost it.
But you still flit about doing things, you say, how? I get asked this a lot, sometimes it’s an accusation. Which I understand. My answer: When I have to appear in public, I rev myself up on adrenalin to get through. Then crash when I got home. Not a good way to live. But you do what you have to.
Also, I have good days. And on these good days I feel invincible and I skip ecstatically back to the Sarah I used to be and I surf and sometimes I run and I head out for a good dinner. And I’m just so bloody grateful to feel normal again. If I play it right, I’m good (if I don’t overdo it, if I eat well that day and get enough sleep). Otherwise I crash. It’s a price I pay.
But you do everything right these days…what gives? I’ve stopped using the adrenalin so often and it’s all caught up on me. I’ve become more mindful of burning my adrenals and so things are unraveling, as they need to. You know how you get a cold on the first day of your holiday …it’s like that. I’ve been getting more relaxed and real with life…and so my body is like, “hey, we can finally dump this shit and really let Sarah know how we’re feeling”.
Finding my sweet spot, modulating…it’s baffling. For me and for those around me. If you know someone with AI you probably know what I mean – we seem full of contradictions. But understand what’s going on is crazy and complex!!!
So you can see why I’m FIRED UP about getting to the bottom of the craziness. To find the best way to live with my condition – to modulate for life. I’ve had this intent for a few years now, but the intent has become pointier.
That’s the grand thing about having an AI:
If you’re not living true and good, it will come and belt you into shape a bit…steer you such that you have no choice but to go to the pointy end of things.
And get real.
And this is the other grand thing: in the wash-up, you realise your AI is your gift. Like for me… and tell me if you don’t think this is pretty cool…
Communicating stuff that counts is what I’ve always wanted to do. Since I was a kid.
Because of my AI, I’ve had to pare my work back to blogging and writing ebooks (they allow me to work sporadically).
But I’m realising now, in the wash-up, blogging and writing ebooks are EXACTLY perfect mediums for me to communicate stuff that counts.
Ergo, my AI steered me. Perfectly.
I’m FIRED UP about getting well. About sorting through the criss-crossy issues that define AI. Finding the best help, and working out for myself the best path to wellness – because, honestly, I CAN NOT FIND A SINGLE PRACTITIONER IN AUSTRALIA WHO GETS WHAT GOES ON for people like me (and, please, if you’ve found someone, please share…I’ve tried Facebook support sites and groups OS…nada). This is a really common complaint and I get emails every day from people frustrated down to their tired toes with the sorry state of endocrinology and mainstream medicine. (You’re not alone! It’s not you! It’s them!).
I’m FIRED UP + COMMITTED to sharing everything I learn with all of you here. I’m lucky. As a journo I can get access to the best experts in the world. So it’s my responsibility to take full advantage of this privilege and then share all that I learn.
I’m going to kick off next tomorrow with a post on a treatment I’ve been getting that really does work wonders. If you’ve tried some different techniques, or if you have general AI questions, or if there’s a treatment/approach/whatever that you’d like to know more about…pen your thinking below…
In wellness,
x
I just want to say that I think what you do is truly amazing. Using your voice in such a positive and giving way is unbelievable and I feel so grateful that you take your time to communicate all your knowledge for the benefit of others.
I have learnt so much from your site over the past few years and am so much weller for it.
Thank you so much and I do hope you find a greater level of wellness in 2012.
xo
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January 11th, 2012 at 9:59 am
I completely agree with Erin! Thank you Sarah for sharing all your knowledge about health and wellness with us
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February 2nd, 2012 at 12:03 am
There’s such a thing as a little too much knowledge being a dangerous thing…….Infra red saunas and AI are an oxymoron…….when your not medically qualified to offer health advice, its best to stick to your knitting Sarah
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November 6th, 2012 at 1:32 pm
WHAT A GHASTLY PATRONISING NATSY THING TO WRITE
November 10th, 2012 at 9:57 pm
I have been to a lot of doctors and none of them can not help me. They offered me no advise for my tiredness. My results for my blood test TSH, T3, T4 are always good. Sarah’s information from other reader’s help with solution to fix my tiredness.
are always for TSH, T3, T4I am always tired.
February 18th, 2012 at 10:41 pm
Hi Sarah
I know what you mean. I’ve had Hashimotos for 27 years. About 3 years ago I was diagnosed with Rheumatoid Arthritis. I’m also insulin resistant. All these different specialists and really, they have no idea. I am also a registered nurse. You have no idea how frustrating these diseases are when you are a health professional. Please keep searching for answers. I have a few theories now that I have come by during my journey. I think the gluten thing is very real and Im trying to do that. Im going to try your sugar e-book. Maybe I’ll find some answers here
Thanks again
Jeni
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November 9th, 2012 at 3:00 pm
I like your honesty in your writing, I learn more from you. because you write like a real person, easy to understand. I stop reading books. because I’m always tired. Since having radioactive iodine 131 for my Graves Disease, I have been a complete mess, too tired to enjoy life.
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February 23rd, 2013 at 12:17 am
THANK YOU for sharing! I had Thyroid Cancer last year and had complete removal! I am on my meds and I am a great patient taking my med same time everyday with no food! However, I keep needing adjustments….I want to go over my bloodwork WITH my endocrinologist as things can be called “normal” but there is a range. I want be an active participant in my range of TSH, T3 and T4! I think the doctors get sick of us! It’s frustrating! I can’t find one doctor that really knows what this feels like…
thanks everyone….you guys make me feel normal!
Amber
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March 11th, 2013 at 7:02 pm
Hey Sarah
Thanks for sharing. You’ve probably researched this disease so much already. Have you heard about parasites affecting our health resulting in similar symptoms? I haven’t done a lot of research. A friend of mine though had her hair start falling out, she had to give up work as a teacher, she was incapacited more days than not out of the week. I heard from my mother after a year of this, after she was diagnosed with an auto immune disease but not able to know which one, they thought she might have a parasite. She visited Thailand for her honeymoon just before it happened and they thought it might be from that. Anyway I hear she’s recovering well, I’m not sure if they were correct with the diagnosis of a parasite and treated it but now she has just her first baby and was able to return to work full time when she started to get better. I have looked at reviews on parasitic treatment and they seem quite positive.
All the best Sarah just found your website after seeing your book and I’m loving it.
Take Care
Lisa
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April 1st, 2013 at 5:45 pm
I am about to try the I quit sugar. I have Hashimoto’s and nod with empathy as I read Sarah’s posts. I find that unless you have experienced it alot of people don’t get how debilitating it can be. But… after trying alot of different food and exercise ideas that worked a bit I have now found a routine and started to heal myself. I have removed all chemicals from my house and as much as I can from other environments I am in. I eat NO PROCESSED food and add no salt. I have been very strict with eating organic produce for the last few years and I now eat a 80% raw food diet. 10 % /10% cooked grains and cooked proteins. I not only feel mostly great most of the time, I have the energy for the gym everyday and I have been able to reduce my thyroid medication by a third! Highly recommend giving it a go. I am hoping quitting sugar will give me that bit extra to feel great ALL the time.
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April 8th, 2013 at 1:32 pm
Hi Sarah,
I had given up all hope of the doctor or endocrinologist being able to help me ‘live’ with my hashimotos. Very, very, very long story (sounds just like yours) of over 20 years of feeling like crap so with a little help from google, I researched and researched and swallowed some supplements purchased over the net (all perfectly legal) which made me even more resolute to find some relief … and I did!! I had my Doctor write a script for Thyroid Extract which can be made up in varying strengths and I take Adrenal support supplements from America. For the first time in 20 years, my hair isn’t falling out by the handful, my skin is clear, bags and puffiness around the eyes has gone, sleeping so much better, brain fog – gone!!! – as have the muscle aches, sinus problems, headaches … which is sheer bliss! I just feel so much more energised and normal, it is wonderful (about time though). There is nothing magical about the thyroid extract – it is what was used before the advent of synthetic drugs and you dose according to how you feel.
Good luck in your wellness search and I hope it doesn’t take you 20 years to sort it out.
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Thank you so much for this blog! I officially believe I’ve reached an ‘aha’ moment today. I reverted to old eating habits and have been wondering why I can’t wake up for work in the morning the last few months. I also have Hashis and was gluten free and almost completely dairy free, spring through fall. Holidays and work stress got in my way and I totally caved. I had been trying to get on track again, but for some reason it’s been harder this time around.
Your post today is a sign that I have to take. Back to gluten free starts now. Its gone as far as I have noticed my thyroid has swelled since photos of me in the summer. I am not a fan of the regular blood lab testing because my doctor tends to increase the dosage, when I know I can make a diff with diet instead.
Sorry this is so long. I just really wanted to thank you for this website. Can’t wait to read more!
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January 11th, 2012 at 10:57 am
Ooohhhhh, Dori, gluten is COMPLETELY a no-go. No buts. No ifs. No excuses. I promise. I just wish I’d been told this before it was too late. I kept eating gluten for several years and from what I read now I prob would be cured by now if I’d quit. PLEASE quit for good!!!
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Hi Sarah,
I completely understand what you’re saying about having good and bad AI days and how confusing it is for friends and family, particularly the ones you don’t see regularly. And confusing for myself! It’s very difficult for them to understand that although I look and seem healthy when they see me (often because I’ve rested during the day before seeing them and applied lots of makeup to make myself look a bit brighter!), I’m actually quite unwell at times. I feel like they don’t understand, and I’m pretty certain they think I’m exaggerating!
My Crohn’s disease has been a source of depression and anxiety for me, I find it very interesting the way you have turned some horrible stuff into a positive. I am sure you have your down days, how could you not, but you are doing great things for us AI sufferers, and as of this weekend I am quitting sugar to try and combat my AI and the depression / anxiety.
Thanks Sarah!
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January 11th, 2012 at 11:28 am
Hi Sarah, {{{{{Hugs from me}}}} … I completely understand your comments above especially [Quote]I’m pretty certain they think I’m exaggerating! [End Quote]
… this is pretty much how I find most people with regards to how I feel and what I am going through. I have just been diagnosed with a thyroid issue and I just don’t want to tell anyone about any new things that pop up as they make you feel like a hypercondriac .. who would have thought one person could have so many symptoms for one thing!! Feel better soon. xox
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I have Hashimoto’s as well — well, sort of. I had it as a teen, and then in my late 20s, my doctor has said it’s somehow gone away, which is really rare. I’m not sure how it happened, but my bloodwork has been normal for quite a few years. I know how it feels, and I wish you nothing but good health!
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I have only been diagnosed with Hypothyroid a couple of weeks ago so have been trying to find as much information as possible since. I started the I Quit Sugar brigade on 1/1/12 .. 11 days into it now but still not feeling the best and I know that is because the medication has not kicked in yet and may not even be at the right level, I won’t know that until after the next blood test next week.
I was interested to find something this morning about the effects Goitrogens have on our thyroid. These are all things I have taken for granted in a healthy diet, now I need to rethink my eating plan. Still staying sugar free but now I have to find subsitutes for some favourite greens. Just wish it would all disappear, but I know that isn’t going to happen without help. Thanks for some great tips and recipes. xox
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Hi Sarah,
I don’t know where to start …. I found your blog just before Christmas, not sure how I stumbled across it. In my desperation I was googling Hashi’s etc. I have suffered for 16 years but lately have been so so bad. Sleeping at work, napping all weekend, so foggy, acute bursitis…anyway you know the drill. I have been gluten free since the day I read your blog – I have never, ever in 16 years been told this and looking back I actually believe eating gluten has probably caused my AI. I suffered migraines for years and years before my diagnosis – they are totally gut related. But not one person in 30 years has ever suggested coeliac or gluten as a cause or run a test for that and I have had so many blood tests???!!!! I was told to avoid red wine, chocolate and oranges. I have been told I MAY benefit from a dairy and wheat free diet by naturopaths, but nothing definitive. My adrenals are stuffed. I am now really scared about other AI disorders effecting my long term health. I feel 147 not 47.
So thank you thank you for being a voice in the AI wilderness. I have a tiny hope now that I may find my mojo again wherever it lies buried/hidden and find me again not that I think I’ll recognise myself, all I know of myself now is an exhausted, irritated, frustrated wreck that spends many a day wondering if it’s worth going on – I get so little enjoyment out of anything.
I love the images you use too. I see them and”laugh and cry “Yes! The guy in the hammock …. many a time I fall face down onto my bed and don’t move….
mwah
Susie
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Hi Sarah, thank you for explaining how you feel. My sister is exactly the same and she’s just been diagnosed with a thyroid condition but she hasn’t been given all details yet, just the beginning. Keep writing when you can – you are terrific
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I am so grateful not to suffer from AI stuff all the time, but it does make it weird when things go haywire as the doctors I dealt with during my last episode have usually moved on and I’m stuck explaining it all to someone new and trying to get a handle on things quickly. I’m trying to be stricter about living better during the ‘well’ periods too but it is easy to forget how nasty the episodes can be, and my desire to live ‘normally’ often gets in the way.
Thanks for the constant reminders to take care of myself all the time, not just during an attack. xx
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Some folk get cancer….some folk get auto immune diseases…some folk suffer from headaches or poor bones…..many of the nicest people i know have some ‘bag of rocks’ they are carrying around.
Myself, living with an AI disease (Crohns) i feel it is about acceptance. Getting past denial and anger as the bassline and moving into fear and acceptance…then once there, yes, by all means have bouts of anger and denial, but acceptance is the key for me. From there you begin to look at things that might help, like diet/lifestyle/mental health etc….in denial you look at things that can take the pain away, wine and busyness.
These days i see life with AI as I have no control, very little control…some days i feel crap and other days i feel ok ish……..but have set up the lifestyle so that on the crap days, i can ‘exit stage left’ …this helped me hugely, changing the lifestyle….the lifestyle is now malleable towards how i feel…and if i feel good, i get out and enjoy the physical things i like, being outside, surfing, golfing and what not.
Good luck everyone and well done Sarah for keeping the info flowing. Anyone who is reading this stuff (and has an AI disease) is a step further down the line than the folk who are denying its reality.
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January 11th, 2012 at 4:36 pm
Andrew, the bag of rocks thing is so apt. It’s amazing how surfing and being in water helps, too, hey!
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January 12th, 2012 at 7:27 am
talking things that help, for sure, there is something incredibly good about the sea…..
AI is so complicated.
i could be gluten, dairy, alcohol and fun free…could be doing yoga daily and getting in the sea and STILL feel like crap….then again, i could be eating ‘bad’ food, guzzling booze and doing no exercise and feel great….what is weird is there is no recipe. . . what is consistent is that my body is not very happy in the modern environment….a wise person once said to me;
‘it is not so much what you are eating, it is what you are thinking and feeling while you are eating it.’…another person said to me ‘what you eat and think today walks and talks tomorrow.’ I like those quotes.
Also of interest is that Crohns is rampant in Australia, America and the UK but not prevelant in most asian countries…surely that is a starting point for them to find a cure?
Just to put Crohns in perspective, when i have been bad with it, i could not eat solids for 6 months because it was too painful, was shitting blood and weighed in at 45kg, was sleeping 18 hours a day and they had to operate to keep me going. I was 18.
I believe one of the hardest things with AI is the concept that your body is attacking itself…
There is a lot of concern on this ‘thread’ that AI are ‘invisible diseases’ and no one knows much about them….i can say, i am quite happy about it….i mean after all, the AI shouldnt define one as a person and as long as one has emotional and caring support from loved ones, who cares what the general public think of your health? What is a dark situation is when members of your family do not understand and think you are just whinging…this is a horrible situation to be in, where you are justifying yourself to family….sure, one might have to do that to work collegues, but geez, family?
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January 12th, 2012 at 11:40 am
“could be doing yoga daily and getting in the sea and STILL feel like crap….then again, i could be eating ‘bad’ food, guzzling booze and doing no exercise and feel great….”
YES!!!! Thank you!! Someone else feels the same. It’s weird, huh? I’m really sorry to hear about your Crohns, as an 18 yr old guy that must have been awful.
January 12th, 2012 at 12:37 pm
I am very grateful not to have an auto immune disease but I do have IBS and leaky gut. While I can’t relate to the servious issues that you guys face, I can relate to doing all the right things and feeling crap and then saying to hell with it and doing and eating what I please and not have much symptoms. It is inconsistant. It is very annoying and it makes it harder to stay focused on what exactly to do. At least that is my experience. Maybe it is a deeper issue like what we’re thinking and feeling while we’re eating. I’m certainly doing something wrong somewhere…
January 13th, 2012 at 11:15 am
thanks Mia..and rosie…..it was a tough ‘welcome to the real world’ for sure, aged 18 being lumped with something you had never heard of……these days, 35 and still dealing with it…but the medicines and the awareness of the disease is 100% better than it was in the early 90′s. I think an intangible health benefit is just being happy and loving life, leaving all the ‘crap’ to one side…..good luck. A*
Hey Sarah,
So sorry to hear you’ve been unwell. My MIL has hashimotos too and I can tell when she is going through worse times.
I know you’ve gone paleo and this book is probably as far from paleo as is possible, but have you read The China Study? It gives an interesting view on autoimmune diseases as well.
xx
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thanks sarah for keeping us in the loop with your AI issues and any progress you make…it really helps people like me who don’t have a clue how to make sense of their crazy body
I’m an AI magnet…ankylosing spondylitis, graves and a nice big angry case of sarcoidosis…can’t seem to find ANYONE who cares about why I have 3 AI conditions all come on within the space of a month and keep getting told it’s a coincidence…highhhly unlikely I would say!
thinking about going gluten-free for good and seeing if that helps lower any of this out of control inflammation
if you do manage to find any dr who understands AI and doesn’t want to just throw medication at it please let us know!
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January 11th, 2012 at 4:37 pm
AI’s often travel in threes. Seriously. Ditto mental illness. Serious!
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February 6th, 2012 at 10:09 pm
My theory is that most AIs are one disease, manifesting in different organs. I have Interstitial Cystitis (absolute hell on earth, no words can describe how fucked up and life-destroying) IBS, Endometriosis, Vulvodynia and Bipolar. My sister has autoimmune liver disease and my brother has Ankylosing Spondylitis. Most people with Interstitial Cystitis also have at least one of the following: IBS, Chrons, Vulvodynia, Endometriosis, Hashimotos, Fibromyalgia, CFS, Mitral Valve Prolapse, Coeliac, etc etc. Until the medical establishment starts treating these diseases as a whole body, systemic issues, we have no hope for a cure or in my case, even treatments with higher than 20% respond rate.
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February 15th, 2013 at 10:12 pm
I’m in a similar situation, ankylosing spondylitis, thyroid and adrenal aswell as PCOS. Bit annoying but have to stay positive
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Hi Sarah thank you for your honesty, I love your blog!
Have you heard about the compound chemist in Ballina? I’m waiting till I have my baby (not long now) to go see them, I don’t have an AI problem but just want to be checked over, I’ve heard good things, the website is http://www.custommedicine.com.au/ hopefully they may be able to help, all the best xx
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The worst part for me is the isolation. I already feel I have given up everything that I used to love doing, and given up the hope of doing what I want to do with my life. The worst part with having a chronic and invisible illness is not being able to explain it to anyone. The host of drs/ endos/ practitioners I have seen seem to enjoy treating me like a hypochondriac, one charming kinesiologist even suggesting that Oroxine is “addictive” (???) and a tool of Big Pharma to make us all sick, and totally unnecessary.
I can deal with the soreness, the PMS feeling, the toilet issues Sarah mentioned (yep, feel you on that one!) and even the frequent infections that require antibiotics several times a year. What I cant deal with is feeling like I am isolated from the world. I cant even explain it to my friends, dating is kind of a nightmare so I just avoid that too… I really wonder some days what the point of it all is!
Well I was going to try to be positive but that just came out like a whinge. Screw it, it’s the best I can do today.
I am looking forward to reading some more of your thyroid posts Sarah, and I really hope healing comes to you (and everyone else) soon. Much love & hope of better days! xx
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January 11th, 2012 at 4:41 pm
Oh Bluegirl…it’s touching to hear where you’re at, too. Yes, the loneliness. The quiet, alone time is so needed….but it can become a habit and before you know it you’ve haven’t spoken to anyone in days and you realise you’re pushing help away. I get you. I don’t know if this helps, but I make an effort to find ways to re-enter back into life. I’m often surprised by how much support I do get when I do. I know you know this because you’ve “defended” my trips to Sydney etc in the past.
The healing is a moving feast…inching forward, hey!
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January 12th, 2012 at 2:18 am
Mia Bluegirl,
I TOTALLY hear you. I’ve been struggling with CFS/Hashi for several years & feel like the world/life are just passing me by as I sit idly at home, alone. It’s hard to stay positive & hopeful, I know. Just like with the physical symptoms, the emotional stuff has it’s good/bad days too.
I’d strongly recommend getting off gluten foods…and not substituting with the gluten-free alternative products, but just eliminating them all for a while to see if it helps.
Sarah, I really enjoy your blog…and enjoy it most when you’re investigating & sharing your health findings/experiences with. Thanks for all you do & keep up the great work!!!
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Hi every one out there ! I have” shoggies” ie. Sjogren’s and it has attacked my legs and feet. As a result i have Peripheral Neuropathy. I am on Lyrica and Tramadol and just stopped taking Clozepam as i know i was becoming addicted. So, most of the time i can work , but by the end of the day i’m in alot of pain.Like most of you , doctors keep on prescribing pain killers, . i ‘d rather do less than take more meds, or i will end up like a zombie . I have tried alternative therapies: so far nothing has relieved my pain. I have been Gluten -free for over 2 years. I just live in hope.
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January 11th, 2012 at 10:25 pm
Ivana I read somewhere the other day that Venus Williams the tennis player has this too. I think it was in The Age. I’m pretty sure it said that she followed a mainly raw diet and that it had helped. I’m sure if you google it you could find out. Hang in there. I feel for you xxx
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Wow. This post is so honest and powerful. I can relate to all you have said. I do not suffer from hashis but CFS. Similar to others I stuggled with people understanding, it has been 2 and a haf years of being house bound and I only recently feel that those I know and love have finally understood what I suffer is very REAL. It is frustrating when you spend a week or weeks without seeing anyone not able to do barely anything, then you get properly dressed, put on a bit of makeup, meet up with friends or family for a few hours, put all you have into those few hours, running on adrenaline and they think this is you 24/7 and your healed. Acceptance has been paramount for me, acceptance of self, situation and the judgement of others. Having a blog sure helps put it all out there for others to see the raw realities! Thanks so much for sharing. Agree with finding an approriate doctor. The best doctor is you. x
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January 12th, 2012 at 12:57 pm
Amy, just an FYI, I posted a reply to your comment but it fell to the bottom..!
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January 12th, 2012 at 5:57 pm
Amy, I totally hear you on this, we can come across so wonderfully vibrant for short periods of time, sometimes even fooling ourselves, but often struggling through the social stint through sheer determination. You are not alone.
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The mainstream medicine is everywhere the same: The doctors think that there are simple tests and treatment for Hashimoto’s disease. You just take a pill and you will get better. How wrong it is! I think you can find more understanding and practical help from a holistic doctor. They evaluate the state of your immune system, what triggers your increased thyroid autoimmunity and establish a proper nutritional support to address it.
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Hi Sarah
I have recently read “Take control of your health and escape the sickness industry” by Elaine Hollingsworth which you may find helpful.
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January 11th, 2012 at 2:48 pm
Goodness, I just borrowed this from the library yesterday, and stayed up til the wee hours reading it! I cant say I loved the tone to start with, but it surely was an interesting read
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January 11th, 2012 at 4:42 pm
She’s the chick based in Qld? I’ve read it, too. Intense.
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January 11th, 2012 at 5:19 pm
Does it get less… angry? I had a look at the website & didn’t get more than a few sentences in.
January 15th, 2012 at 10:11 am
Hi Mia, sorry for the late reply. I would recommend borrowing the book if you can. It caught my eye with it’s references to Weston a. Price and talking about fats. Funnily, also about the dyes in toothbrushes! My approach is to nitpick information here and there that I am drawn to, so if I get one or two little gems from a book, it suits me fine
But yes, the anger did make me screw my nose up a bit.
Xo Britt
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Oh, I just love this post. You have so clearly expressed how illness affects us- I can really relate to A LOT of this having experienced Adrenal Burnout at the deepest level. I have found someone amazing who has helped me- this after endless efforts w/ other holistic practitioners. She is in the US but she does phone consults. Truly the best person I could ever recommend for anyone who has these type of issues. If you’re interested you can find her info on my blog. Either way, looking forward to hearing all the exciting things that are bound to come about as this new chapter unfold for you!
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January 11th, 2012 at 4:43 pm
Maria, just checked out your blog. It’s lovely! Do you want to share the contact here with people?
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January 12th, 2012 at 4:48 am
Sarah,
Thank you for the kind words. Here is the web site where you will find contact info-
http://www.tvernonlac.com/. Anyone who considers working w/ her needs to know that the work she does is deep and can take up to 3yrs to really see significant changes.
I talk about how I found her and why she works for me here if anyone needs more info.
http://www.restco.blogspot.com/2012/01/how-i-started-getting-better-part-2.html
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Hi Sarah,
I am so grateful for your blog. I have two AI diseases – arthritis and hypothyroidism and I’m only 27. Reading your posts have made me acutely aware that my AI’s could be chalked up to my lifestyle and I’m the only one who can make changes to that.
Thanks again.
Amanda
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I really appreciate this post and the pain being expressed by sufferers of AI. I 100% agree with the gluten-free, dairy-free, paleo-diet aspect as VITAL for sufferers of AI.
One thing I want to add and this is not a guarantee. Your nervous systems governs your body. Your spleen does not heal your spleen. Your stomach does not control the function of your stomach. Your brain does. Your brain heals the cuts on your hand. There is the possibility in some cases that if your spine is misaligned and you are cutting off the nerves that monitor the health and function of your immune system, thyroid glands, bowels, etc. that you are potentially exacerbating the issues and problems associated with AI.
There is at least one study where the nerves to the immune system were disrupted and immune system function ground to a complete standstill. There are more than 100 different scientific studies linking improved immune system function with chiropractic adjustments.
If it were me and I was living in agony I would at least have a look at a curve correction based chiropractor and see what they find by doing full spinal x-rays. At the very least having a properly functioning spine and nervous system will help with many other aspects and even side-effects of what you all are going through.
My very kindest regards and healing thoughts,
Greg
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January 11th, 2012 at 11:03 pm
I am also a great believer in chiropractic and have been receiving adjustments for 10 years. This belief was tested when I was diagnosed with an aggressive breast cancer 4 years ago. I still have weekly adjustments, but am not entirely sure it is the answer.
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Thank you so much Sarah! You have been a source of light, strength and good old common sense, through the last few years. You write about the crappy bits of AI in a way that my own pretty, girly, Stardust, Rainbow Light, Glittery language cannot convey. I’m learning to be more vulnerable. Open. To share and love my crappy bits. To stop hiding my AI from my Loves. To find beauty in it. To ask for Help sometimes. When I’m all sore and sick and puffy and inflamed and my body has done something completely WIERD, it is tricky. And when I read your words, I remember that I have a whole world of Luminaries out there, to celebrate Life with. Other AI Luminaries that Get It. Fighting the good fight together, one wobbly breath at a time. So heart-swellingly, tear-jerkingly, heart-fire-ignitingly Delicious! Love izennah xo
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January 11th, 2012 at 5:42 pm
You said it! Thanku for the inspiration xx
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January 11th, 2012 at 8:07 pm
Thank you Carly! I had to add that my beautiful boyfriend just called. He has seen me through the last two years of AI up and downs. We are living in different cities while I heal & he follows his Dream job. I forwarded this article to him (and all of my Loves), and he said this is the first time he has understood what I am going through. What this mysterious Autoimmune caper actually IS. That he understands why I am so hyper on the days I feel well. Thank you SO much Sarah! You gave me the words to open up to my Loves. xo
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Sarah, I firstly would like to sincerly thank you from the bottom of my heart for sharing all in your posts on AI, I have been reading your blog for some time now and it has given me a great sense of comfort knowing there are other people out their also suffering as I do. My mother has Lupus, my aunty has MS and I was diagnosed with Graves 6 yrs ago. In the last 12mths it has come back 3 times and has sadly taken control of my life. Unfortunalely I am having difficulty trusting my endocrinologist treatment and guidance given, so I am curious for anyone out their that can share their experiences with me who also has Graves as I often struggle to find a ways to live through this disease?
My kindest regards and gratitude to everyone else who also share on this blog,
Carly
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Sarah whenever I read your blog I feel inspired. At first when I read your posts it’s a bit like getting a big kick up the backside!! Which, believe me, I need! I try to hide from my illness and pretend I have a normal life, which of-course is a ridiculous thing to do and then I wonder why I feel so damn tired and ill ALL the time. No one understands what we go through expect those that have an AI disease or 2 or 3! So thank you for being so inspiring. I really enjoy reading your posts and find your blog hugely helpful. Thank you. Thank you. Looking forward to your next post.
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Courageous you Sarah, for presence-ing the “gifts” of illness. I can relate so much to everything you’re saying as I continue my own healing journey with chronic fatigue, adrenal fatigue, viral hepatitis & glandular (read: over-doing things) fever. I’m re-learning my limits, embracing slow and un-do lists.
I stumbled across this naturopath in Brisbane, who I haven’t seen personally, but because of this article – http://www.healingmetaphysics.com/ThresholdsArticles/art_PathogenPromise.htm I feel like he “gets it.” Have a read and see if he feels like a fit. The website for his practice is http://www.michaelfinnhealthservices.com.au/
Go well
Kelly x
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Wisdom, like Love and Death, takes no prisoners … and each of us will be dragged to our knees by one or all of the above. Krya på dig !
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You took the words straight from my mouth. I have adrenal fatigue and have hypothyroid. I got sick of GP’s telling me there is nothing wrong with me “your blood tests are normal” well I did not feel normal! So I did a lot of research and stumbled upon the Stop the Thyroid Madness website which confirmed everything I thought I was going through. I have been seeing a doc in Sydney who is open minded about treatment however I have not yet seen any improvements in the past 4 months. I have spent thousands of dollars on medication, blood/saliva test results, doctors visits and vitamins. I am at the point now where I may have to quit my full time job because of my fatigue, brain fog etc. I find it frustrating that not a single doctor in this country as Sarah mentions is able to say this is what is wrong with you and this is what we need to do to fix/stablise it (wishful thinking). Please do let us know if you stumble on any contacts that can assist. I have lost a lot of weight and my scalp is forever thinning, I cannot even look at myself anymore. Please someone tell me this will get better!
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January 11th, 2012 at 9:44 pm
Been where you are and just wanted to say that I am thinking of you. You aren’t alone.
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January 13th, 2012 at 2:25 am
Issy I hear you!! I have had test upon test done as well as spent countless funds that I don’t have on Specialist with no proper a answer.
My GP actually said he doesn’t know what to do with me nor do second opinions help.
I quit my full time job mid December because I have had constant headaches, fatigue and the cursed brain fog for months now and on and off for a few years.
It is most frustrating and isolating, my only peace of mind is having a supportive partner and reading blogs like this where real people are going through the same thing.
Thanks Sarah for talking about these issues, love the blog!
Good luck Issy, i hope it gets better too.
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January 13th, 2012 at 10:55 pm
My IA specialty is rhuematoid arthritis. I consider myself pretty luck in that in the 10 years since I was diagnosed, I’ve been able to mostly avoid drugs by working my diet. In that time I’ve seen four rheumatologists who were completely disinterested in any treatment that was not drug related – diet, acupuncture, meditation (“if you think it makes a difference…” very frustrating…
But two years ago, I came across a fantastic guy in Melbourne who is all about getting you off the drugs by making changes to diet and lifestyle. I had a bad flare up (the worst so far) late last year, and he recommended I get off gluten, and I’ve been able to reduce my meds by more than half (and counting) in just a couple of months, which is brilliant. Google the Lewis Institute if you are interested. I’ve randomly met a couple of people who have seen him, and also think he’s fantastic.
In fact, Sarah, I’m planning to recommend your blog to him, and Lee’s Supercharged food recipe book. Your blog has been a particularly rich source of info for me, and it’s been a great space to come to when I feel a little bit alone with it all. It’s nice to know that others are out there…
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Thanks for speaking up about these issues Sarah. I suffer from Hashi’s and also had thyroid cancer. I’m on oroxine to suppress the thyroid gland (as only had half taken out) and still suffer from the effects of the hashi’s. I was told to go gluten and dairy free however I also suffered from Anorexia when I was a teen and unfortunately the stress of this and the cancer lead to a relapse of the anorexia..so I have been told by the dietitians that I need to have gluten and dairy etc etc etc. It’s a hard line. The endo’s are hopeless and if the blood results are fine they do not believe that you are still ill…despite all the symptoms of hashimoto’s.
I do hope that you can find wellness and I wish you all the best on your journey.
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I don’t have AI but do have Hep B. Two years I ago, when I was in the midst of my second bout of it, a close friend said to me as a joke (supposedly) “your such a hypochondriac”. I wanted to smack him in the ####### mouth I was so furious. At the time I had lost 10 kgs as I was so sick and everyone kept saying to me how fantastic I looked even though I thought I was going to die. So what I’m trying to say to you Sarah is that I get what you mean totally about having to pull back, having days where you need to retreat and just be quiet. And I thank you for your honesty and bravery in being so open about your personal life. Peace sista. xxx
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I just want to tell EVERYONE about salicylates! They are in so many veggies and ALL fruit (except pears), almonds and other nuts, all coconut products, and cause things like arthritis, ibs, many skin conditions, anxiety and depression, migraines and on and on.
If you have ever felt flushed after eating, experienced a tight throat, had headaches or sore joints or had a reaction to aspirin pretty please do some research, Sue Dengates work is a godsend (google ‘fedup salicylates’), and look into the rpah elimination diet.
Xoxo britt
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Hi Sarah,
Great post! Your blog really helps me understand what my girlfriend is going through. I’m currently reading “The Thyroid Solution” by Ridha Arem so I can be better informed when I try to support her. The problem for her is that she hasn’t been diagnosed with an AI, but based on our research, I cant see what else it could be. Her GP is kind of brushing her off right now getting her to go through all these tests that seem to be leading nowhere. Anyway, I was just curious to know if you know of any good physicians or endos in Canada or the Toronto area to be more specific?
Thanks for all the tips and great posts. All the best for the new year.
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I live in the UK – you would think there would be more help here, but no! So totally in the same boat I’m afraid xx
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Sarah – this was an awesome read… thank you so much! I have two autoimmune disorders. Celiac disease for more than 40 years and most recently microscopic colitis… with no cure or system for managing but to grit your teeth and smile through it. That said, what spoke to me most was that you’ve chosen to see this as a GIFT – I am right there with you, and often speak at celiac group events about this perspective. My “ailments” have forced me to live a more conscious life and listen to my “gut”. Look forward to following what your gifts are telling you!
Many thanks,
Claudine
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I live in the US and stumbled upon this blog. Had Graves in College, and now as a 29 year old suffer from Hashis and Celiac. I’m the only one of my friends or family who have had AI and it can feel a bit isolating at times. I’ve had arough bout with my hashis – still dealing with a puffy face and an extra 10-15 pounds that is messing with my head. Its hard to explain to pople but I basically feel as though I dont recognize myself. AI can rob you of your identiy. I used to run, play, eat adventurous foods etc so this has been a real adjustment as I navigate this illness. I generally have a postivie attitude. For example, I consider celiac a blessing bc it made me take a good look at foods and ensure I’m putting high quality food into my system. I love to cook so took it as a challenge to “paleo-fy” my favorite dishes with (mostly) great success. Its even trickled over to my family. My husband has never looked better bc it generally eats what I eat and even my parents (whom I suspect as undiagnosed celiacs) are making positive changes in their lives.
The hashis…THAT is something that I’m trying to get under control. After crying and wondering if I would ever look and feel like myself again, I stumbled upon your blog and feel better. You have a great attitude and look gorgeous and give me hope that I’ll feel the same about myself again someday.
I see you are working with Chris Kressler. I too am working with him! My first appt is in a few weeks so I am anxiously awaiting you next post re: treating yourself.
Also – anyone suffering with AI disease should check out Dr. Jack Kruse’s blog. He is a neurosurgeon in Nashville who advocates paleo eating, mindfulness and has one of the most extensive understanding of hormones and AI disease that I’ve ever come accross. The blogs are a bit dense as there is a lot of medical jargon but its worth reading and re-reading. I’m following his Leptin RX and feeling postive effects from it as are a ton of other people on Marks Daily Apple (primal eating website) on the monster leptin reset thread. It should be noted that Dr. Kruse is not selling anything – he is sharing his knowledge for free.
http://jackkruse.com/the-leptin-rx-faqs/
http://www.marksdailyapple.com/forum/thread32345-1365.html
His latest blog blew my mind. The title is misleading – its about Fibromyalgia and other AI Disease being connected to neurotoxins in your body. Its facinating. He actually told me I “motivated” him to write it which made me blush
He’s getting pretty well known in the paleo world. I see him on the roster at confrences wiht Robb Wolf, Chris Kressler Mark Sisson and the like.
Latest blog:
http://jackkruse.com/hey-lyme-disease-meet-leptin/
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[...] open about her struggles with Hashi in general. She has a whole section on autoimmue disease. how to heal autoimmune disease: an update | Sarah Wilson Reply With Quote + Reply to [...]
Also, I can realate to constipation. Have you tried a product like “natural calm” a magnesium supplement? I drink a glass every night (start low and dose up…max around 700 mg) and its done WONDERS to my regularity.
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December 7th, 2012 at 3:38 am
I was going to suggest Magnesium Calm as well. I started using about 6 months ago and never have constipation anymore unless I forget to drink it. I am up to 2 teaspoons a day.
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December 7th, 2012 at 11:28 am
I am on Ultra Magnesium and having fantastic results too. I’ve recommended it to everyone I know. I too have about 2 tspns x day. It also has zinc and selenium.
I’ve since googled selenium and have read it is just as important as iodide and iodine for a healthy thyroid and that a lot of other health issues can also stem from low selenium levels as it is not found in most food due to the top soil erosion from the ice age.
I can feel my metabolism speeding up again…….
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December 7th, 2012 at 11:29 am
p.s my bf is on it and after many years of not sleeping well he is now sleeping normal again…
Sarah –
Thanks for all of the info you have on your site about Hashimotos, it really is invaluable to hear so much from a real person struggling with a disease instead of some doctor that has no idea.
I have been seeing a practitioner here in the states that uses Dr. Kharrazian’s immune modulating protocol with good results. I am not on any thyroid meds, and hope to not have to go there. Before finding her I was doing ok on my own with gluten/dairy free (after reading his book), but knowing which immune stimulants to avoid has really stepped it up a notch. I am also learning muscle testing to see which foods/supplements are good for me.
Recently my beast has been adrenal fatigue, and it seems that whenever my thyroid behaves the adrenals start crashing. Always something!
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Sarah-
I am a patient of Chris Kresser’s. I learned of your blog shortly after he mentioned his interview with you and just love it. This post captures the essence and rawness of AI – I too have Hashi’s and for years struggled with conventional medicine and “endocrine experts” all to have my labs knowingly ignored and told to just “increase the dose”. That is when I fired them, took control of my own treatment and sought out new experts that understood the underlying causes of AI, not just the cover-up-the-symptoms approach. Hence, my discovery of people like Chris Kresser.
What struck me most about your post is how true to the core, a subtle, invisible illness can really interfere with the function and social-ness of the human spirit. How those without AI do not see a large bandage, or stitches or visit you in the hospital. They see a person who walks, and talks and appears normal. Yet AI has days of rearing its ugly head where the only thing to do is to stay in bed.
Like Mickey, I have been working with Chris and others to fine tune what I can do to help control the onslaught of the AI portion, stabilize the thyroid (though I still need to take supplemental T3/T4 synthetics to help it along – we think my AI did too much tissue damage before), and I am learning how to supplement and balance the immune system. I too have adrenal fatigue and when I start to feel better, what do I do? I jump for joy, ride my bike too many miles, finish too many projects and become the overachiever I love to be… just to tax out the adrenals and cause another crash.
Balance, the balance that AI is forcing me to find, is a very thin line some days. Its an art and a science, but I must be mindful – or my house of cards will topple.
Thank you, Thank you for your honesty, your camaraderie, and your authenticity!!
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January 12th, 2012 at 10:57 am
Torea, love this quote…rhyme
‘AI has days of rearing its ugly head where the only thing to do is to stay in bed.’
i can hear a song…
A*
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Thank you everyone. i feel less isolated knowing you are all battling with some type of immune disorder. I ve been looking for answers for a long time , and at times it all drives me a bit crazy. My life now revolves around the internet , searching for someone or something . At the moment i am looking at anything that might aggravate my Sjogren’s/ Neuropathy. My question : does anyone know which foods, supplements, herbs, medications, hormones, or ANYTHING at all that stimulates an already overactive immune system , so i can eliminate or at least avoid them ? I WOULD BE GRATEFUL !
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January 12th, 2012 at 11:50 am
Hi Ivana,
I’m sorry I can’t help too much, but I just wanted to say that I’ve struggled with an overactive immune system myself due to an unnamed AI disorder that flares up in cycles of about 4 years (weird, huh?). It’s really hard. I found the only thing I could do was hit it with antihistamines when it’s playing up low-level and immuno-suppressants when things really get ugly. They only deal with symptoms, not underlying causes though. No-one seems interested in treating that, or even getting to the bottom of it.
Hugs xx
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January 12th, 2012 at 10:11 pm
I would suggest lookIng at salicylates (found in about 70% of plant foods) I’m in the early, early days of learning, but I do know they act as a stimulant and cause inflammation in my system. Please look into the rpah elimination diet. Xoxo
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January 13th, 2012 at 1:04 pm
Hi Ivana, I too have Sjogren’s (diagnosed 13 years ago) and my ANA titre levels have historically been through the roof (>5000) however 5 months ago I went completely grain free and have been following the Weston Price principles (raw milk, kefir, bone broths, alkaline diet) as well as doing tons of meditation, yoga, tai chi and neurofeedback (beta brainwaves were constantly stuck on overdrive). My last blood test 2 weeks ago showed my ANA titre had reduced to 1:320 and I feel amazing! Trully recommend the Weston Price philosophy.
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@Sarah Wilson – I know how you feel (exactly) about the practitioner thing.
It took about 3 years but eventually I came to the realization that I just had to fix myself, myself! This included the never-ending and highly inconvenient thyroid ‘issues’ which were taking over my life!
I was one of those patients who would do absolutely anything to get better (and I mean ANYTHING !!) – so I took it pretty personally when I was told things like: ‘I’m under-qualified to help you’ or ‘perhaps you’re just stressed/overexercising/whatever…’
I am impatient by nature and was really sick of being ‘let down’ (if you can call it that) by professionals who had no idea what to do with/for me. I ended up seeking some help/guidance overseas –
Take care,
Stephanie x
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Hi Amy, oh lord do I hear you! Accepting I had CFS was one of the turning points of my recovery. I tried for about 3 months to fight it (and of course got steadily worse!). Then, with the gentle encouragement of my parents I shut my business, moved to Tassie and in with them, checked out of life as I knew it (saw about 2 friends in 4 months which didn’t really worry me b/c stimulation was one of my biggest weaknesses) and well and truly gave up my independence. Then things started turning for the better. I was diagnosed April 2010 after a year of pretty bad health and by December 2010 I was a 9.5/10. I went from walking 5 minutes a day last May to 2.5 hours a day in a matter of months. I put it down to: an amazing Dr/naturopath who took the time to get to the bottom of my CFS (we got alll the answers as to why I was sick) & put me on a course of supplements and a strict gluten/sugar/caffeine/alcohol/anything processed free diet; exercise (as nuts as that sounds when you’re in the thick of it) and; FIR saunas. If I can help you at all with your recovery please shout out, I am so happy to share my story and any little tips that made all the difference for me. I know we are all different and the same tips may not be as effective for all but my belief was anything was worth trying in an effort to get my life back.
x
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January 12th, 2012 at 5:35 pm
Hey! Yes that acceptance is soo crucial, I tried to push myself it through for years, most definately making the extent of my illness so much worse!! So silly. I am so lucky I still live at home and so when I finally realised what I needed to do I could just flop. It has been 2 and a half years trying everything! But I have a very strict regime in place now which I am happy with but always open to new additions! I am with you on stimulation, I still sturggle with convos phone/real life, tele, computer and wotnot, I feel guilty not contacting friends often but thats the way it is at the moment. That is amazing the transition you have made. Who did you see? I have been doing a lot more digging recently and it is great to get more answers even though the tests have been so exy! I am very similar I have been grain free for a year and half, no sugar, dairy, caffeine, soy, legumes, alcohol (feel hungover anyway), nothing processed, organic, mainly paleo diet I guess! I just started walking 150 metres the last month as well as light weights. I have finally improved from what felt like 5 percent to maybe 30 percent! I was doing the FIR sauna for a while also. You are correct it seems different people get better slightly differently but I will try anything, I have done some crazy stuff, met crazy people trying to heal. Would love to email or chat to you about what you did if you are up for it. My email is amy.southorn@hotmail.com.
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January 14th, 2012 at 5:15 pm
Just discovered this blog and it’s great to know I’m not alone! Acceptance was definitely key for me too and it’s what finally got me to pack up and move back in with my parents and although I am isolated and I don’t get to see my friends, I finally feel like I am on the right track with my CFS – and the truth is I felt so bad before that I rarely saw them anyway, I didn’t even want to leave the house.
Moving back home forced me to simplify my life and to also find a new Doctor. I thought I was already doing all I could but seeing a new GP and having a new round of tests led to a complete overhaul of the supplements I was taking. Now, nearly one year on I am slowly but surely getting my life back and for the first time in years, my tolerance for exercise is increasing and I don’t end up in bed for days afterwards!
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Anyone looking for a wonderful specialist GP in Perth…try Dr Jocelyn Cullingford at Desana on Cambridge St, Wembley. She has a very nuanced understanding of thyroid conditions and other non-specific, hard to diagnose chronic conditions too. Her appointments are long and detailed. Downside is she can be very hard to get into and is expensive. Worth it though.
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January 12th, 2012 at 3:30 pm
A Perth person!!! Legend! Thank you
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January 29th, 2012 at 4:54 pm
Thanks Kirsty (and Sarah!) – I have just stumbled upon this great blob and Kirsty’s post while searching for some kind of help in Perth and am curious about Desana (I found another mention of this practice with the listing of a Dr Salim Ismail) I was diagnosed with adrenal fatigue ~ 6 months ago but currently feeling confused and depressed, not quite confident in the diagnosis or wondering if it goes deeper for me, and concerned about getting stuck on the wrong path / not moving towards recovery. I was diagnosed with via a saliva/cortisol test and have been on such heavy supplements (‘Dr James Wilson’s adrenal supplements). I am confused, hearing of many other conditions with similar symptoms that ring bells for me (eg. headaches, poor digestion, dry mouth, tingly feeling in my fingertips, hormonal imbalance, dry-eyes, muscle pain – I have many people giving me their 2 cents worth and mentioning Addisons, Sjogrens, Lupus etc)
It is so comforting to hear people relate to the lack of understanding from friends/colleagues and sometimes even family members. This can be such a big part of the struggle when you feel you’re not even being taken seriously or worse still, written off as a ‘pessimist’ or a ‘whinger’ when really you’re a happy person trying desperately to get back to living life. It really struck a chord for me; the mention of being aware of friends observing/perhaps judging – on the rare occasions you are out and about looking ‘so well’ followed by confusion or the perception that ‘surely you must be getting better’. I can generally hold myself pretty well and ironically I often worry that this make things worse as it would be a shock to know how bad I’m sometimes feeling on the inside.
I’m unsure whether to constantly endure my GP’s waiting list for check-ups in order to discuss ruling out other conditions or whether I should seek out a specialist / alternative help.
Thanks for the interesting read – I had a slight melt down this morning, but everyone on here is very brave and there are many interesting and inspiring stories that help me stay positive.
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June 7th, 2012 at 6:11 pm
I feel it goes deeper for ALL of us. Sorry I’m new to this blog so I don’t want to be reiterating what everyone has already heard – but you can cure your auto immune disease.
Take 2 steps today:
Order the book Gut and Psychology Syndrome, also known as the GAPS, by Dr. Natasha Campbell-McBride. Read read read, absorb what you can. Then use all the wonderful sites on the web to make this easier to understand and follow.
The next step, go to a GP and ask for a Leaky Gut urine test.
All the best!
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Hi,
I don’t have AI aside from minor rheumatoid issues but I see an amazingly knowledgeable and lovely naturopath in Sydney named Leah Hechtman of the Natural Health and Fertility Centre in Hornsby. She really knows her stuff and can explain blood tests results so thoroughly. She is also an excellent listener and always asks for your own intuitive feelings of your own diagnosis. She even impressed my husband (hard to do!)
Hope that helps someone out there…
Nat x
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Sarah, I now check your website every few days..it inspires me..it makes me feel connected, that I am not on the wrong track with my progress. The info you provide has been a godsend, I was diagnosed with acute rheumatoid arthritis in April 2010. The rheumatologist’s advice was for me to start immediately on new “biologic” drugs and steroids – she told me “you will be medicated the rest of your life”. I asked her if any dietry/supplements would help, and she just scoffed. I have not seen her again, and google has been my best friend. I reasearched everything I could with regard to AI diseases, as I, like many of you, couldn’t understand why my body would start attacking itself and if so, surely I could “turn it off”. It’s been a long – continuing – recovery – I’m not 100% yet, but I am drug free and I reckon about 90%. I truly believe that I can fully recover. No grains at all, no dairy, no sugar (occasional glass of red) – the no sugar includes fruit and honey. Heaps of supplements – I saw a great Dr in Brisbane who did “live blood cultures” and raised numerous problems – all relating back to gut issues. Sorry this is so long… I truly believe we are on the right track with the paleo, clean living… I also meditate.. so much on your site resonates with me even though I have a different AI disease.. I think they are all linked.
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January 13th, 2012 at 11:00 pm
Kelli! Try Daniel Lewis – google the Lewis Institute, he’s excellent! He is all about using diet and lifestyle changes to heal your RA. I see him, and know/have met others who do, we all think he’s amazing… I first saw him a few years ago when I was symptom free, just to see what else I could be doing to stay healthy, and he was really helpful.
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October 1st, 2012 at 10:21 pm
As an RA sufferer also diagnosed in 2010…I went on the biologics. I’m not 90%, I’m now 100%. Inflammation gone (and all bloods normal), joints amazing, tiredness gone. Hate to say it, but the anti TNFs work.
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Has anyone been to Dr Ludka Berkowski in Sydney? people rave on about what a great doc she is.
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Hi Sarah!
He has helped me with health issues i’ve had and comes recommended from other people. He’s based in the UK but does do phone consultations – hope this help!
Thanks for you column – some great info here;) Just wanted to suggest you check out a guy called Elwin Robinson he is a nutritionist and Taoist herbalist and is a fountain of knowledge on health and a nice guy to boot. His website is elwinrobinson.com and his store is lionheartherbs.com and if you type his name into youtube he’s posted a lot of videos on there. I don’t work for him promise
xxx
Erena
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Hi everyone. In my quest for answers, i have noted that 9 out of 10 women suffer from some type of autoimmune eg. Sjogren’s, MS . It seems Oestrogen dominance may trigger or aggravate a response in women. This of course includes all types of Xenoestrogens from our environment eg. plastic, pestocides, water etc. Food for thought !
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January 14th, 2012 at 11:43 am
Really, 9 out of 10? That’s a shocking number!
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Hi Sarah,
Thanks for having the energy to make this website. For years I thought I was alone with these symptoms-everything that youv’e descibed! Your website is a great antidote to all those Doctors I’ve been to see over the last 10 years, telling me unuseful information and ideas re my Hashimoto symptoms. ie ‘your thyroid levels are normal on your thyroxine, you might be better off on an anitdepressant’, or ‘you have leaky gut syndrome’etc. I also get severe bloating regularly as a symptom despite having removed gluten, most sugar, gut cleansing and taking digestive enzymes and IBS support tablets. Does anyone else have this symptom? Some days I look 6 months pregnant and frequently get asked, which just adds o my elated mood!!
In regards to a good GP-I am in Perth and I have found a pretty good one for the first time. His name is Dr Dane Pervan in Shenton Park. He gets it as much as he can (without having it), and really listens to you and actually believes what you are saying. He does a whole range of tests including adrenal function as it is closely tied with Hashimotos. He is very wholistic, but doesn’t send you home with hundreds of dollars worth of supplements that you know dont work as you’ve tried it all before! So far-he is at the top of my list!
And Sarah-you are right. No one gets it! I also just dissapear when having bad days and can’t even text let alone talk on the phone. When it hits, it hits hard and my legs struggle to carry me to my bed. I have three small girls to look after, so this is hard to do! I have to say that I am having much fewer of these days after taking the adrenal support that Dr Pervan pescribed for me. The first thing that has ever made a difference. I tried natural thryoxine, but for some strange reason, my TSH sored sky high and it was as if my body either didn’t recognise it or destroyed it, or the pig had Hashimoto’s!!
A good website is http://www.adrenalfatigue.co.nz or read James L Wilson’s book “Adrenal Fatigue-The 21st century Stress Syndrome’.
Sally (Perth).
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February 1st, 2012 at 1:30 pm
Hi Sally,
It was interesting to read your post – I am actually another patient of Dr Pervan’s with adrenal fatigue, and taking the Dr Wilson products. It was confusing as it took ~ 4 months for me to feel a huge improvement on these heavy supplements (and unfortunately once I did feel a tiny bit better I went and over did things, leading to a total set back).
I recently had IV Therapy (vitamins) and a B12 injection at Churchill but now a few weeks later, I have had nasty headaches and a lot more of that nasty tummy bloat. I felt so embarrassed walking around yesterday knowing I really did look 4 months pregnant!
Did Dr Pervan give you any good suggestions re. the tummy bloat? I was wondering if my body is starting to reach more of a detox mode with excessive levels of certain supplements (such as the Vitamin B) – and perhaps this is behind the increase in sore bloated tummy. I’m also learning that the headaches may be linked to dramatic hormonal drops (I have irregular period once every 2 months and the migraines could be linked to this?) I’m waiting for my next appointment and will pass on anything helpful.
I definitely have those bad days where I tend to prefer totally withdrawing and it can be quite lonely when you feel no-one around truly relates.
Glad you are having some really positive results
Ange (Perth)
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February 9th, 2012 at 8:09 am
Hi Sally, I just checked out the adrenal fatigue website you posted and had a look at the supplements…(ive posted below about my symptoms btw) trouble is I live in England so can’t get these products. I was just wondering, do you take Dr Wilson’s adrenal support products and if you do, do they work?
I’m wondering whether I need to go back to adrenal support supplements if I have adrenal fatigue..again..
Sarah
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Hi Sally , i know exactly how you feel when you look pregnant . I felt better after menopause, i am convinced that Oestrogen plays a big role in the bloating because even on HTR I know when my oestrogen levels are high for me. Some women are more sensitive than others to oestrogen and feel bloated . Natural , bio-identical PROGESTERONE in most cases does help.
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Hi Sarah
I am very sad to hear you are having such highs and lows. I feel so happy that you you are share your knowledge to help others with AI disease.
If anyone has a thyroid condition and would like to try natural thyroid treatment (made from animal products, instead of thyroxin), i see a doctor in New Zealand called Tessa Jones who does her own compunding. There must be other doctors in Australia who are similar, Australia is a much bigger place!, if anyone else can share that would be great?.
Anyway she will do skype and her details are:
http://www.karangahealth.co.nz/doctors.html
(p.s she won’t ship meds to Australia, because Australia has recently banned this), but you can take a small amount in your suitcase and she will normally give you a years dose.
I am in the process of training my GP in Bondi to prescribe me the right does of the stuff, i think i am going ok as far as getting the dose but he has no interest and I am liasing more with his pharmacist, so wouldn’t reccomend him.
By the way i’ve tried thyroxine and i felt terrible on it, i don’t personally think it worked well for me.
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Hi Sarah,
Thank you for your honesty. I find your blog such an inspiraton. I do not have an AI, although a number of years ago I was tested for Sjogrens, but thankfully I don’t have it. I have, however been diagnosed as having had an adrenal crash and subsequently adrenal fatigue. At the time though I was diagnosed only with depression and anxiety. 5 years later I am on the mend, although still on the anti-depressants. A friend put me onto a great dietician at the end of September and since then I have been onwards and upwards. I’ve now banished 16kgs from my body (another 20ish to go) and I’m back dancing and exercising regularly and feeling happier and healthier than I have in a long time. Conventional medicine still has a lot to learn, thank goodness there are many more practitioners out there now who are seeking alternative approaches to health and well-being.
Healing energy to all
April
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I had CFS quite bad and received some healing from the people at Sukyo Mahikari.They concentrate and channel a universal life energy which had remarkable effects for me. There is a centre in Sydney and some practitioners around Byron and they are all volunteers so there is NO charge for a session. There is a spiritual philosophy behind what they do but there is no onus to embrace it, rather one can just go along. It works on detoxifying the body with a big emphasis on purifying the kidneys. Definitely worth a look,
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thanks for your transparency and insights! Have you connect with the guru being Sally Joesph?
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I’m still in the middle of trying to sort all this out. At the moment I’m seeing an orthomolecular guy and an Asian GP who, whilst he is trained in western medicine, has a strong Chinese medicine ethic. My consultation with him was a really lovely experience – almost meditative – and I’m taking a few things on board ie: standing up straight and tall to allow my organs to work properly, abdominal breathing, starting yoga, etc. I’ve also started on a 5000iu Vitamin D therapy (once a week for a month, then once a month from then on with a lesser daily dose). Even though I get enough sun, and have a good diet I, like a lot of others, just don’t ‘synthesise’ Vit D from the sun/diet(???) Anyway, four weeks in and I’m feeling pretty good and I can definitely recommend everyone getting their Vitamin D levels done. HOWEVER, there are blood tests and there are blood tests. Finding the right doctor to do the pathology request, requesting the right tests ie: THS, T2, T3; and then having the right person read the results are all important. I remember once sitting through a three-hour fructose tolerance test – very uncomfortable – only to find that no-one knew how to determine the results. (I felt so awful at the time that I figured the result was pretty positive.)
Anyhoo, there’s my two-cents worth
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January 15th, 2012 at 10:19 am
Hi GiGi,
I agree on getting Vit D levels checked. I’ve recently had an injection of 600,000 IU after taking supplemental vit D with no effect. I believe this has been the single most effective thing I have done to increase energy levels and keep me in a positive frame of mind.
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http://drjanechapman.com.au/
Sarah this is the doc I go to on the gold coast – completely holistic. I see on her web site she deals with thyroid issues but I’m not sure to what extent. She is assisting me with adrenal/cortisol issues. Just in case she can offer anything. Ele
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Hi Sarah,
Thank you for this blog and everything you so generously share. I think of you often and your story gives me and many others inspiration and really does head us is a sweeter direction.
I wondered if you have heard of the author Elaine Moore http://www.elainemoore.com. I imagine you have. She has an excellent website where she shares the latest research on AL. The Q&A is particularly helpful. Elaine is a supporter of Low Dose Naltrexone potentially for Hashi suffers. Have you looked into this?
Hoping you have an abundant year in 2012 and that it marks the start of renewed health for you.
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Hi Sarah,
I’m a 26 year old female, who was diagnosed with Hashimoto’s about 4 months ago.
I have always been health conscious, highly active and incredibly inspirational.
I felt totally confused that after years of thinking I was doing everything ‘right’ I ended up with an illness. I googled Hashimoto’s… trying to understand it and get a grip on what life was handing me… and I ended up here at your blog.
Honestly, it has been my BEST friend during this time.
You have helped me so much in understand this dis-ease and learning ways to cope and “modulate.” This blog has helped me more than any medical professional I have seen.
I also believe Hashimotos has been a, albeit surprising, gift. I have always struggled with saying “no” to people, I take on everything for everyone else and put myself and my needs at the bottom of the pile. Now, after feeling so uncomfortably “thyroidy” I inevitably have to say no sometimes and I am noticing my life is changing. I am a professional singer, and a songwriter and for the first time in my life I am getting by on a tiny portion of money doing what I love and that only.. rather than always working a string on jobs trying to have extra digits in my bank account but absolutely no time to work properly on my music.
I have spent years of my 20′s juggling. It doesn’t work!
Over the last six years I have consistent ally lost my voice due to over singing and over talking (always the girl who was always afraid of letting an akward, silent space appear in conversation..) and over doing everything in my life. Sleep was an inconvenience for me as it got in the way of working hours and despite the fact my throat would lock up and I would sound like a 60 year old man I continued to talk and sing and work…. If only I had known.
Anyway..
My life is changing. For the better. From Hashimoto’s. The universe really does surprise!
Thank you always for the awesome links, the most up-to date information and the personal touch you put in all of your writing. I rely on this website on thyroid days to make me feel better, and it totally works.
Sarah.
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January 17th, 2012 at 9:46 am
Sorry not inspirational.. Aspirational. Bloody auto-correct.
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Sarah, the importance of a really good night sleep is not mentioned often. Though I do a range of things like others dealing with AI I have found a consistent good nights sleep is essential in dealing with AI.
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I left a post here a few days ago about my struggle with AI, Vitiligo which is basically when your skin pigment changes. I was a white man becoming whiter, particularly on my hands. This is much more noticeable in darker skinned people. There was also foggy brain, swollen feat and hypersensitivity etc. I moved to the seaside and country from Sydney seeking an answer. I have looked as every aspect of my daily being in search of a cure. I started to look at what I am sensitive too and found some startling results that won’t suprise you. I found that I’m very sensitive to alot of things, and I had to be careful here as to what is the chicken and what is the egg, or cause and effect. To make a long story short, I found that household chemicals, detergents and bath soups had poisoned me through my use of them. They had made me super sensitive to so many other things. There were also diet issues that I have addressed such as gluten. I found that I was alergic to gluten.
I am not fully cured but I’m getting there, and it will take some time to fully rehabilitate my body, but the fight is worth it.
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You may have already read this article, but I thought it might be of interest to you.
http://chriskresser.com/low-t3-syndrome-iv-an-autoimmune-disease-youve-never-heard-of
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I have Graves Disease and totally relate to much of your blog and other people’s comments. Like you, I do almost everything positive and healthy that I can to keep it at bay. And, it comes and goes. I have good days and bad. I look well and healthy and people do not understand when I am not “well”. It’s something that I’ve tried to hide for years, but now I am far more comfortable being open. It’s up to them how they deal with my honesty.
Gluten does appear to be an issue, as do Grains, in general. It’s because of the lectins which inhibit absorption of nutrients into your bloodstream, hence the feelings of exchaustion, etc.
I source most of my breads from Deeks in Canberra https://secure.deeks.com.au/index2.html — My natural therapist in Sydney recommended this diet, about which you can learn more from https://secure.deeks.com.au/aboutDeeksStory.html — basically you keep ALL grains out of your diet for a minimum of 6 weeks and then gradually re-introduce them one at a time.
Also, there is a Dr Ludka Berkowski who is/was a Hashimoto’s sufferer. http://www.drludkaberkowski.com/ I have read a myriad of good reports about her and will visit her if my thyroid gives me problems again.
I have been working my way through “The Healing Codes” and have committed to give it a dedicated 3 months before I make any assessments. It takes time to put our bodies into a state of dis-ease, we need to give it time to recover. See http://thehealingcodes.com/ It’s veeeerrry different but hey .. if it works, why not. I have replace my daily meditation with the techniques in this book. There’s a lot of logic in the rationale behind how & why we become ill. There is no science in the methods used in the healing process, but apparently there are tesimonials galore. All I know is that I definitely feel much calmer, less exhausted and able to cope better with testy situations. I’d probably say I am more balanced and flexible. If things don’t happen the way I’d like them to, then hey .. it’s no big deal. I don’t need to be more forgiving as I am not judgemental, just relaxed about whatever happens.
Currently, the TFT’s say I am in remission and hope to stay that way. Nevertheless, once you’ve had an AI disorder, you need to live a balanced life. I’m used to being super-busy and super-active — not anymore! The only sad thing is that I don’t have the ability to commit to a business that I was trying to build as there are still many days that I just cannot give it the energy and commitment required. But, I am now reassessing; thinking do I need to do this at all, and if yes, then how do I work smarter and do it differently.
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January 31st, 2012 at 9:05 pm
Carole, thank you soooo much for these pointers… looking into them now
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Hi Sarah,
I am just wondering if anyone would have an opinion on why I am feeling so bad at the moment – I was diagnosed with Adrenal Fatigue ~6 months ago and have been taking heavy supplements ‘Dr James Wilson’s adrenal products’. I recently had a real set back after I had finally begun to feel a little stronger and got ahead of myself, trying to get back to my old self and over-exerting in daily exercise. It was then that I tried an intravenous therapy – Vitamin C (15gm), Methylcobalamin, Glutathione and Vitamin B. This was ~ 2wks ago and I am now suffering dreadful on-going headaches and now have my nasty bloated tummy back which hadn’t been occuring for a while. My last few chiropractic adjustments haven’t held and as the chiro suggested, this means there is something going on deeper and perhaps the headaches / IBS are a sign of the detox really kicking in. My doctor is so difficult to get in to see for further advice and I wonder if anyone has any insight? My instinct is that the high dose of vitamins are now being compounded by my heavy daily intake of the same things. I feel like I’ve been so used to all these nasty symptoms and pushing through them but at some point you just begin to feel like you can’t take all the physical strain and discomfort any more. (and I know i’m not the only one feeling lousy!) But any advice would be so wonderful. All I can think to do is await my doctor’s advice (or seek help with an alternative Dr) and I wonder if these symptoms mean I need to lower my dosage of the adrenal supports. Very confusing at this stage – Many thanks
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Hi Sarah,
I’ve just been reading your post and saw that you were asking if anyone knew of a good endocrinology practitioner. As are a few of your readers looking at the comments.
To cut a long story short, I’ve just recently overcome Graves Disease which is a little different to what you are experiencing. Luckily I was diagnosed initially by my holistic GP in Melbourne quite early on who referred me to a great Endocrinologist that I couldn’t speak highly enough of. I was under a 12mth treatment plan with Neo-mercozole and within 3-4mths my levels were back to normal. I was also under the treatment of a Chinese Medicine Practitioner, ensuring I got enough rest, made diet changes, focussed on relaxation techniques etc. I realise that every case is different.
The endocrinologist I saw was very professional, compassionate and progressive in her treatments. I’d heard horror stories of other endocrinologists treatment plans and am so thankful that I was under her care.
Her name is Dr Caroline Meyer, she practices in Melbourne and appts are by referral.
Am happy to offer further information to anyone that is interested.
Wishing you all good health and happiness.
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hi everyone. i ve been having a terrible time… the pain in my legs has been horrible ! the meds are not working anymore, my body is used to them . I hope to meet someone who also suffers with PERIPHERAL NEUROPATHY caused by SJOGREN’S .What works for you . ????? i cannot see a light at the end of this tunnel , i’m 59 and don’t see a bright future . There is still so much living to do and i don,t know how i can cope . I TRY TO BE POSITIVE BUT THE PAIN CONSTANTLY REMINDS ME .! .My love to all of you suffering as well xox.
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February 7th, 2012 at 12:09 pm
Hi Ivana
I really hear your suffering and that of all the others that comment here. Life can be very hard sometimes and even cruel at best. I get really down too and depressed with my vitiligo. At times I think I have got it beat and the color of my skin is returning, then I will wake up and notice there has been no change, which depresses me so much as I have done so much and been through so much. When I get in that situation I put on a very funny DVD that will have me on the flour laughing, and laughter makes me feel so good that I can get on with my life and continue to take up the AI fight. Don’t give up, find ways to make yourself laugh to give yourself strength for the good AI fight. Cheers
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Okay, this is just spooky! My name is Sarah, too, so at certain points your writing could have come out of my own head.
“Also, I have good days. And on these good days I feel invincible and I skip ecstatically back to the Sarah I used to be and I surf and sometimes I run and I head out for a good dinner. And I’m just so bloody grateful to feel normal again.”
I know exactly what you’re talking about – And I’ll be reading on to see where this leads you! There’s a spooky connection between Hashimoto’s and Gluten/Celiacs/Startches…
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I honestly do not know where to start…I have absolutely no idea what is wrong with me but there is definitely something. Two summers ago I got campylobacter, a particularly nasty food poisoning, after eating dodgy chicken in Thailand. By the way, i’m 22 years old. To cut a long story short, it wasnt treated properly with antibiotics until 3 months later, by which time I’d lost all my energy and then on top of that was taking a strong course of antibiotics which wiped out all my healthy gut bacteria..result was I developed adrenal fatigue and couldn’t function for about 5 months, had to see a private practitioner who put me on 5000mg vit C daily, coconut oil, limited light exercise, and various other supplements and probiotics.
It’s been a year and a half and I’ve noticed a lot of things going downhill since then regarding my health and body – I tried going back to my normal active lifestyle and was fine for about a half a year, but recently I’ve had zero energy, and feel wiped out after only 40 minutes of exercise, or just from walking up a flight of stairs, my eyes look droopy in the mornings and I’m pale…I feel like exercise exacerbates things, but I want to stay fit at the same time..oh and I haven’t had periods for about a year and a half now.
I’m trying a mainly vegetarian diet at the moment and have cut out gluten and dairy, but I include animal protein and fish twice a week. I just don’t know what tests to get – does anyone think I could have an AI disease?
How did people find out they had an AI? I’ve got a blood test on Friday and asked them to test the thyroid too, but looking at what everyone’s saying it seems these tests are a little pointless. I’m starting to worry that i’ll never figure out what’s wrong with me..
Sarah xxx
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February 9th, 2012 at 11:33 am
Sarah, do you have access to an integrative practitioner that provides salivary hormone testing (very accurate as opposed to standard blood tests as it measures ‘active’ hormones’) to test cortisol, dhea etc for adrenals, gastrointestinal analysis (using poop usually through healthscope or metametrix), heavy metal testing. Tests I that may be helpful through your doc are t3 t4 reverse t3, tsh, thyroid antibodies, b12, iron, vit d, possibly igg, ige allergies, I find testing IgE levels with doc is helpful as if high points to leaky gut, parasites and immune reactions as well as standard blooda. This is from my experience. A good practitioner should check over these as well as any viral, bacterial infection. Good luck, and get your doctor to give you copies of your results!
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February 9th, 2012 at 1:03 pm
oh and CRP, ANA. Don’t let the doc tell you there is nothing wrong if in their eyes the tests are ‘normal’, get a second opinion always. x
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February 17th, 2012 at 12:18 pm
Hi Amy,
I read your post just before I was finally able to touch base with my doctor last week and I noted down a few of the tests you suggested. As it turns out I think I”m finally onto something (cross fingers) and they were able to provide me with an Indican urine test which has just come back positive, indicating leaky gut and a bacterial infection. I was diagnosed with adrenal fatigue and have been unwell for nearly 1.5yrs with all these nasty additional symptoms suddenly progressing (tummy bloat, nausea, cystic acne, hormonal migraines, insomnia, muscle aches, food sensitivities) – so although it’s unpleasant it’s good to feel some hope of heading in the right direction. I am also waiting on results for retesting my thyroid (and had the cortisol tests done to diagnose the adrenal fatigue). Thank you for the advice you gave. I hope you are doing really well.
March 15th, 2012 at 8:33 pm
Hi I was just wondering, (my post is above)
Did anyone realize they had AI from a blood test that showed up with very low white blood cells? I had my blood tested and it was found that I’m anemic with low iron levels, but I have a feeling that the tiredness, ups and downs of feelings and brain fog etc, is caused by something else..should I be worried about my white blood cells being so low, since isn’t an AI disease caused when your body attacks its white cells?
Sarah
Sarah
Thankyou so much for providing this site for all of us who have to cope with auto immune issues. I can’t tell you how grateful I feel having come across this site and all the amazing information that is provided and shared. Soon I will post a little about some of the things I am trying to cope with and I am finally able to feel a bit of hope that I might get some decent information/support and understanding. Thank you so very much. x
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I’m so happy to have found your blog, I was searching for some info on Cocoa Nibs for help for my Hashimoto’s and found you. I’ve have Hashi’s for over 10 years now and some days are good and some bad. I’m so sick of being on medication that doesn’t seem to help. Hearing some of your symptoms has made me feel that I’m really not going crazy, as I suffer with a lot of those symptoms you have. I’ve started Dr Mark Hyman’s eating plan and found that it helped for about a week but today I’m back to my old self, they say exercise everyday, I tried today and got as far as turning on the DVD but just didn’t have the energy to do any. Thanks so much for your blog, I don’t feel so alone any more.
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Hi Sarah,
I’m new to your site and just want to say I love it. I have a thyroid issue too (hashi) and love that you share your information and journey here. Keep it up PLEASE!
Thank you!
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Hi Sarah
I have been feeling, as you say, ‘Thyroidy’ on and off for many years now. However, I have not been diagnosed with Hypo-Thyroidism as most of my blood work is within “normal range”. I do have Thyroid anti-bodies and the sub-clinical signs and symptoms of fatigue, joint swelling and weight-gain are prevalent. I have been able to convince a bio-chemical GP to prescribe thyroid extract. I was wondering if in your opinion, despite having normal blood work would it be advisable to take the thyroid extract or could I perhaps be ‘barking up the wrong tree.
Lisa
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[...] written by Christine Miserandino’s “Spoon Theory” and through many posts on how to heal auto-immune disease on Sarah Wilson’s [...]
Sarah – the other one
You asked:
“Did anyone realize they had AI from a blood test that showed up with very low white blood cells? I had my blood tested and it was found that I’m anemic with low iron levels, but I have a feeling that the tiredness, ups and downs of feelings and brain fog etc, is caused by something else..should I be worried about my white blood cells being so low, since isn’t an AI disease caused when your body attacks its white cells?”
AI can be one of 80+ different diseases that are categorized as AutoImmune. The issue is that each one attacks a different kind of normal tissue. i.e.: Hashimoto’s attacks thyroid tissue, whereas Multiple Sclerosis attacks the myelin on nerve cells. It would not surprise me if there is another one that attacks white blood cell count. Just in the past few months have we seen scientific studies in the US that are correlating upwards of 55 of those diseases to be directly associated with intake of gluten!
When I was first properly diagnosed, I had Hashi’s, Low WBC, iron anemia, adrenal fatigue to name a few. I had all the symptoms you describe and more. I used to be a professional pilot, and with the iron anemia, i had issues getting enough oxygen even in pressurized aircraft which would contribute to extreme brain fog. I had to stop flying professionally in order to help my body heal. When i moved to a paleo-based diet and started eating red meat and liver (yes you get used to it) again, that really helped with the brain fog and energy levels. But you would likely want to work under the care of a health practitioner to make sure that not only are you looking at diet changes, but supplements (those are usually temporary) and lifestyle changes.
Hope that helps.
Torea
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Sarah,
Have you put your search out on Twitter? I have a few people in Austr and NZ that are VERY active in the Paleo community and Tweet very consistently. Follow me on Twitter (@PranaPT) or follow Robb Wolf (@robbwolf) or Jamie Scott (@thatpaleoguy) to link up/ask for recommendations.
Ann
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Thanks Torea for your reply! if you dont mind me asking what AI do you have? I’m a bit worried now you’ve said that that I might have an AI too
I have a follow up blood test next week to see if my white blood cells count have gone up, if not the doctor is referring me to a haemotologist…My iron store has gone up dramatically though since taking iron supplements, but I still get brain fog, tiredness etc if I exert myself physically say by doing two days in a row at the gym (running machine) – today I feel drained and coldy, even though I had a day off yesterday :S it’s really confusing. I’m going to ask my doctor for more tests – thyroid, adrenals etc, she’ll probably look at me like i’m crazy and won’t know half the tests but i’m determined to get to the bottom of this!
Torea, have you healed yourself thoroughly yet or do you find that you have up and down days all the time still?
Sarah
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I have hashi’s as well, plus a myriad of other hormone imbalances due to it.
Dr Greg Emerson in Brisbane is excellent.
He’s been the only Dr that can help treat the cause and the symptoms for now.
Depending on how you want to work it.
I would book a visit for him…. he’s not “cheap” but the value is highly worth it.
Contact me if you like.
Marc
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Hi Sarah,
Great article, thank you. I am a holistic health practitioner working with the subconscious mind and i have also gone through the same health issues as you have. I had stage 3 adrenal exhaustion and hypothyroidism.
I have found that adrenal exhaustion is mainly caused by stress. Too much adrenalin and cortisol (stress hormone) in our systems. I have worked with a few clients, refering them to naturopaths and i also work with their subconscious minds. Most of us are always running around and never give ourselves time to rest….or even know how to….
I have a website http://www.globalhealingexchange.com and a community of more than 17,000 people at https://www.facebook.com/GlobalHealingExchange?ref=tn_tnmn. Come join us. There are ALOT of great healers there.
Sharon
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Hey Sarah,
I have been reading about AI and i was just wondering how you find out if you have it or not?
Kind regards,
L.
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Hi,
I had Hashis for over 5 years and no one in the mainstream medical profession picked it up. Instead of giving me help with my insomnia, weight gain, headaches, anxiety, foggy thinking, constipation, fatigue and endless inflammations and infections I was told to lose weight and felt like a hypochondriac. I was lucky to go into the medical centre when a newly arrived graduate was there and she ordered a large range of tests and for the first time I felt taken seriously. Unfortunately she wasn’t there when I came back for the results only the crappy old doctor who should have retired years ago who told me everything looked normal but I needed to have my thyroid retested to make sure the result was right.
That was the clue I had been waiting for for 5 years.. I got out of that office and as I googled ‘thyroid disease’ later that night I broke down in tears when I read the list of symptoms that proved to me that I wasn’t a hypochondriac and I wasn’t mad…. I was very disillusioned with the medical profession at this stage and promised that I would only seek help from someone who had a good knowledge of the disease and how to treat it. My research showed that the majority of doctors are trained to prescribe Thyroxine in Australia… training skewed by the drug companies that produce the drug. This is great in getting lab figures to show your thyroid levels are back on track and works for a lot of people, however there are also a worrying amount of people who have good lab results but persistent symptoms.. and the answer they are given is that there must be another cause.. Unfortunately for Hashi sufferers the medical profession is still largely ignorant of this disease – its causes and the role of both T3 and T4 in the thyroid.
This knowledge made me refuse to be a guinea pig for some doctor I had little faith in. Instead I found Dr Ludka Berkowski in Lane Cove who has first hand knowledge of the disease as a Hashi sufferer herself. I was put on thyroid extract, dhea for my depleted adrenal glands and calcium and Vitamin D. Dr Berkowski did much to restore my faith in the medical profession with her patience, understanding, knowledge and healing. I began treatment in June and two months later felt well enough to take on a casual job as a census collector – my first job in 5 years.. In November my health and confidence improved to the point where I was able to start full time work again.. though I have to be careful not to push myself too hard to avoid a Hashi crash I am still working 6 months later.
I would recommend Dr Berkowski to anyone but unfortunately am not sure whether she can take more patients as her health is also fragile after also being diagnosed with Addisons Disease last year.
After my experience my advice to anyone with this disease is don’t be a victim, be pro-active in researching the disease and the best doctor to help you with it. Unfortunately there are only a handful of doctors out there with true interest or knowledge of the disease thats why forums like this are good so we can let each other know who they are instead of seeking treatment from those with no idea. So if you find a good doctor please share..
Another thought to leave you with… I read somewhere that thyroid disease is googled a million times every day.. with so many of us trying to find answers every day why aren’t we demanding more research and answers from the medical profession? Is there some sort of action group or organisation out there promoting funding and research as is done by the Cancer Council, Beyond Blue etc..
If not, how about it?
Take care of yourselves
Yvonne
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I do not know how you can just say you have an Auto immune disease without actually saying what the disease is, That was what you seemed to be saying when I first started to read this page. Then people started saying they had Chrons or Thyroid problems.
I have quite a number of Auto-immune diseases.
It has never dawned on me to make all the fuss every one is making about Thyroid illnesses. I also Have a thyroid problem. It started after I had a very bad incident happen to me in hospital.
I was not told I had any auto-immune problems until I was dxd with SLE. I have suffered with Arthritis since I was 15 or so but no-one associated it with auto 0immune. I have an inflamed bowel & IBS again it was only the Lupus that was the auto-immune illness.
My history of my medical life & illnesses could go on & on here but I have never lived my illnesses like that. My impression is that everyone here is really enjoying living their illness.
That is not meant in any cruel way but my attitude is get away from it in the way you live. I researched all of mine. I know a great about them all but unless you are involved in a group like this no-one wants to know. With Lupus unless I am going thro a period of real illness I always look well. We all do, it is a standard that people always say “how well we look” So talking about illness like this in a normal group they do not understand and do not want to because you look so well.
The fact you hurt everywhere, you have no energy, want to sleep, concentration is nil, makes you a very boring person, to be left to their own devices. It is a usual thing for us to lose friends because we are tired, hurting, just feel no interest.
On top of this I say I have at least another 5 major auto -immune illnesses I am being treated for and now because I have developed physical disabilities I am disabled. I am 75 yrs old and am told I look about at least 8 yrs younger. That is marvellous because my family have been told 3 times that it looked as if they had lost me.
I am grateful very, to be alive. I wanted to get these books to find out about living without the sugar. I need this information as I am making too much Insulin because I cannot exercise, therefor storing iot as fat. I have no sugar, cholesterol or diabetes but will have the way my body is working at present.
I have an extremely healthy diet, lots of berries, green vegetables, salad, not much other fruit because of the sugar content. I cannot belong here sorry. I cannot download the book. I have a laptop, no printer. I like “proper” books, love the feel LOL.
Must stop.
frilly
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Sarah,
I had Graves beginning in 1998. the thing about the previous 18 months rings very true for. They say Graves is brought on by stress and i had like 3 of the 4 most stressful things go on in my life. I quit my job, I moved to another state and i got married (only no death in the family at the time). And boom! Graves. with traditional medicine, it went into remission for about 5 years. when i came back i did the same thing and it came back again in about 18 mos. That’s when i went for the iodine 151 which i really resisted but felt i had no other choice. Oh how i wish i’d had your blog back then!!
Now, i have figured out–on my own mind you– that i am gluten sensitive. I’ve to had cut alcohol out almost completely but i do enjoy a wine or cocktail on occasion. I have had to quit beer of course, which makes me sad- i love beer.
anyway, i am wondering “now what???” Is the gluten sensitivity forever? What is leaky gut?
any thoughts?
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[...] to have adjusted to the hypothyroid beginners dosage and I am back where I started: feeling as the lovely Sarah Wilson describes it racked by “the worst hangover you’ve ever had. Double it. Add in PMT. And a head [...]
I was diagnosed with hypothyroid (underactive) in Jan2011 on routine checkup. I had no symptoms that I recognised. Feeling fatigued- worked shift work for 10 years. Overweight- I’ve weighed between 50-55kg for 15 years. Cold- Small person. you get the idea.
I’ve never really experienced any symptoms you typically associate with thyroid. Further, after being on Oroxine for over 18months I feel no different than when I started, which I quite frankly don’t mind. Symptoms I have noticed greatly are my face pigmentation. I have lighter and darker blotches all over my face. I can’t find anyone else who has experienced this.
I had an auto-immune disease when I was younger- Hysticytosis X (not sure on the spelling) Not sure if its connected.
Interesting website. Specifically the AI part.
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So glad I’ve stumbled upon your blog Sarah and I mean stumbled accidently….. but wow, this is sooooooooooooooooo me!
I luv this whole post, I too used to get thyroidy days and I’d take days off work to cope. I felt like I had a handle on it years ago but due to stress (which really confuses the dialogue between the two brains; head and stomach) I got lost, put on a whole lot of weight and now have days like that every day. I long to be the old me again…..
but, I like how you said …..”Communicating stuff that counts is what I’ve always wanted to do. Since I was a kid….” i can really relate as living honestly and authentic is how I prefer to live……
but strangely my luv of fashion has enabled me to try to work it out again and not give up. I luv dressing well and for fun but it must be a balance with living honestly and authentically; if you know what I mean….
lots of love
Cilla x
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A good Dr that gets it?
Go to http://www.drgregemerson.com/
He’s also on FaceBook where he does a lot to publish links to journal articles that are extremely helpful.
Seriously, he’s amazing. I’ve been seeing him for about 5 yrs.
He’s also into the role of good and bad fungus and how parasites can be the cause of much illness.
With immune system issues fungus and parasites can take over, and it doesn’t matter what you do you’ll still feel crap.
Cheers
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Hi there,
Super interesting posts from other auto-immune sufferers with different diseases being considered here. I have rheumatoid arthritis. Unfortunately none of the diets or exercie or anything helped me and I hate to put it down to this, but it was the magic medication I finally got given that’s made all the difference. Anti-TNF injections http://en.wikipedia.org/wiki/TNF_inhibitor. I’ve gone from having days exactly as you describe to pretty much back to normal. I play netball, work hard and play hard. My benefit was an incredibly swift diagnosis and amazing medical team (in the UK where I now live). I also saw an amazingly brilliant rheumatologist in Brisbane to prove to my family that this medication was the best way forward. I’m not sure if he could help with your particular AI but god is he amazing. Dr Peter Landsberg. He gave me this really interesting explanation about the immune system and why it continues to attack your own body. It’s similar to how a vaccine works. The vaccine gives the immune system a ‘memory’, the outline of the disease, if it ever does enter your system, and the body knows to attack it. Unfortunately with our AI illnesses, the immune system messes up and does the same, but not to a foreign invader, to us. Anti TNF medication aims to suppress that part of the immune system that is messing up, and try to make it ‘forget’ this incorrect memory. Really interesting stuff.
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I just came across your blog and am really enjoying your posts! A lot of the research has implicated physical and psychological stress in the development of autoimmune disease, and coping with autoimmune disease creates additional stress, which can create a vicious cycle and exacerbate symptoms. I certainly feel like stress had a role in the development of celiac disease for me. I’ve found that practicing mindfulness meditation and yoga work amazingly to calm the chronic stress reactivity with which many of us with autoimmune disorders struggle. As a counselor and mindfulness teacher, I teach clients Mindfulness-Based Stress Reduction (MBSR), which has been shown to reduce stress, anxiety, depression, and physiological symptoms of a number of medical conditions, including some autoimmune disorders. These practices have been life changing for me and for most of my clients. You may be able to find an MBSR class in your area, as it’s offered worldwide. I also teach the practice 1:1 to people internationally through phone or Skype. I’d love to chat with you more if you’re interested.
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Sarah amazing, amazing writer you are! Regarding everyone posting I feel for u all. My naturopath is so knowledgeable in this area. She has provided me with individualized thyroid powders/ tonics and a onsite thyroid prepared cream to apply. She too gets annoyed with the “GP” world who ignore both T3 and T4 results. I too take ultraclean bioceutical ,rehmania, 5000 Vit D, zinc iron and much much more.
For energy levels try Activated B3.
my naturopath in Brisbane, Tina White at Health and healing wellness centre.
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Hi Sarah
Have you tried naturopath Amanda Haberecht at Darling St Health Centre in Balmain? I have Grave’s Disease and went into remission for about five years after seeing her. It’s playing up again now but she seems to be getting it back on the straight and narrow! She’s a fertility specialist and knows a lot about AI disease as a result.
Best wishes,
Bronwyn
PS Great site, thanks so much.
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Hi Sarah
I know that this post is really old now, but I’ve just being going over all your AI/thyroid posts this morning after a visit to the GP yesterday.
My eye has gone all weird and the pupil has changed shape – also flickers alot. He took one look at it and said “thyroid”. I am off to see an opthamologist first to be sure but I see a visit to the endocrinologist in my future. I last went around 15 years ago due to major stress induced body breakdown and thyroid lesions and cysts. The guy looked at me and said “Look, you’re not seriously under or overweight so you must be fine” and sent me off. I was pretty annoyed then but now I am furious. I admit I was relieved to not have had to take all those horrid thyroid drugs but still, lousy doctoring is inexcusable.
Lately I have been feeling like someone flicks my power switch to off all of a sudden, and my brain and body stop functioning. It used to happen a lot but I think I managed to reduce it for a while. I now have a 9 month old baby and have been dismissing it as “baby brain”. My partner thinks I’m being silly, plus he refuses to help me give up bread and sugar as he says it doesn’t affect him. He tells me my problem is not eating enough fruit. I ate so much bread and sugar during and after my pregnancy that I got a fatty liver! I also have crohns, and a metabolic disorder that affects zinc and b6, among other things. I’m worried that if I do finally get a diagnosis, that I’ll be put on toxic pills and have to stop breastfeeding, and not be able to have more babies.
Sorry for the rambling whinge but I needed to vent a little. I am so disgusted that I’ve been failed by the medical system and that for all my knowledge of natural health and nutrition, I’ve failed myself. Thanks for you blog and for sharing your experiences and knowledge so freely.
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I was looking through some of your blog posts on this website and I conceive this site is very informative! Keep putting up.
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Giving us lot of invaluable information.
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This design is wicked! You certainly know how to keep a reader entertained.
Between your wit and your videos, I was almost
moved to start my own blog (well, almost.
..HaHa!) Great job. I really enjoyed what you had to say,
and more than that, how you presented it. Too
cool!
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I have hashimotos too. Please look into low dose naltrexone. It will get rid of all those awful symptoms and fatigue. I was a freaking mess until I started on it, even after going on Armour thyroid. My mood swings are much better and I finally feel in control or my emotions and my mind and body. Low dose naltrexone is an immune modulator that will help your immune system function properly so your body can heal. It does not shut down your immune system like Humira, Enebrel and other medications out there. It increases endorphins, and you feel more energetic and happier, not to mention your antibodies will lower. There are hardly any side effects, but it does work best if you stay GFCF, as it is an opiod antagoinist, and those proteins contain opoiods, or convert to them.
I also have two sons with autoimmune encephalitis who also take it. I decided to put them on it to prevent their disease from progressing, and so they don’t develop Hashi’s or another autoimmune disease. Many doctors and naturopaths are familiar with it, and it is a pretty cost effective medicine.
http://www.lowdosenaltrexone.com
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Hi Sara,
I was recently diagnosed with Hashimoto’s and the resulting hypothyroid conditions. Thank you for your blog, your commitment to make life better and sweeter – having read it I can say that it’s uplifted me today!
It’s a comfort to know that I can learn ways to understand my body, deal with it and make changes for the better. Finally I can stop the guilt and resentment to begin to mentally and physically healing! Thank you, I’m so grateful for you!
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January 23rd, 2013 at 7:54 am
*Sarah!
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[...] Theories on how AI is linked to stress and unbalance. (and small things I can do here) and more about stress causing it here. [...]
Dear Sarah Wilson
I have Hashi’s just like you, however i’d like to know how do you maintain such beautiful long hair. In the past few months ive lost half of my hair and they are thinning rapidly. THIS is devaustating. I feel very depressed and lonely, i’ve been declining invitations to parties and weddings due to this problem. Should i be going on meds to maintain healthy hair , which i’ve been delaying for as long as i can, however my antibodies keep on rising (1500). PLEASE HELP! PLEASE ADVISE!
Thanks Helen
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March 18th, 2013 at 2:23 pm
I would also like to know any tips Sarah has regarding her hair. I have been suffering from hair loss for 2 years now. For me the things that helped was taking T3 medication (but I did not want to be on this forever) and also taking probiotics. I totally understand what you mean when you say you feel depressed and lonely. I have missed out on a lot of social functions because of this.
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Hi Sarah, I dont know if you have looked into Methylation Mutations and particularly Yasko?? Im looking into this for my illness at the moment.
Also have you looked into cross-reactivity with gluten. Sometimes other foods can cause the same reaction that gluten does. Here is an article: http://www.thedr.com/images/gs201crfoods.pdf – Dr O’Bryan mentions something about Hashimoto’s
If you are looking for a good naturopath Id suggest Fiona Chin in Melbourne. http://www.wellnessguru.com.au she is across the yasko genetic testing and protocol as well as the epigenetic stuff.
I hope you find your path to healing soon.
Stephanie
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I know Sarah has covered diet and meditation here as treatment for AID. I have struggled with it for years with Vitiligo, which presents itself as a loss of pigmentation of the skin. I looked every where for a cure for this. There is a lot of snake oil salesmen out there. Doctors recommended a plethora or creams, laser treatments and so on. In despair I happened on a book by Dr Ian Gawler, of the Gawler Institute. Ian is famous for having cured his cancer through meditation and diet, and numerous people have attended Ian’s courses and have cured themselves of cancer. I read Ian’s book, The Mind That Heals Everything. I was not a new convert to meditation, but I was new to the meditation that Ian spoke of, and gradually colour, first pink and then brown have returned to my skin where Vitiligo had taken over. I did not happen overnight, it is a slow process. I hope this may help others.
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