how to heal autoimmune disease: remember you’re no Robinson Crusoe

Posted on April 4th, 2012

Hands down the biggest comfort to anyone with AI is to know the crazy-weird stuff they’re experiencing…isn’t so crazy-weird. Or at least, other people on the planet are going through the same crazy-weirdness.

image via 'Sweet pics dude'

The whys and how comes of AI remain, largely and bloody frustratingly, a mystery. But ask anyone with the condition and they will no doubt have a gut or emotional sense of what it’s all about. I have AI because I have lessons I need to learn. I have to slow down and enjoy life more. I yearn this and so my AI is here to ensure I get it. One day.

Someone sent me the below “letter from my disease”. As always, if you don’t have an AI or chronic illness, bear in mind that an AI is merely an extreme version of the dis-ease I think so many of us are feeling. When you have an AI, the reminders of the dis-ease are just louder.

If you’re new to this blog, you might like to catch up on some auto immune and hashimotos reading here.

The letter was originally posted on a UK thyroid support group forum and has circulated a little.  It struck me as uncanny how many AI phenomena it raises that I thought were just Me Things. Like:

* it rears its grim head on days when you’re looking forward to something

* it stems from a trauma. Yep, tick. Mine was a series of traumas that conflated.

* the Hashimoto’s roundabout ALWAYS involves seeing 23847239 doctors before you get something resembling traction.

* a TENS unit helps! This is similar to a SCENAR, which I thought I was the first to discover alleviates AI symptoms!

* you forget things. Last week I couldn’t recall my Mum’s name. Stumped. Head stalled.

* And so on…until the bit about the only thing that helps is sharing stuff with other Hashi kids.

Below, please do share your stuff if you have AI. I’m sure we’ll get it. And if you know someone with an AI, feel free to onpass this post.

Hi….My Name is Hashimoto’s, and I’m an Invisible Chronic Illness.
I am now velcroed to you for life. Others around you can’t see me or hear me,
But YOUR body feels me. I can attack you anywhere and anyhow I please.
I can cause severe pain or, if I’m in a good mood, I can just cause you to ache all over.

Remember when you and Energy ran around together and had fun? I took Energy from you, and gave you Exhaustion. Try to have fun now! I also took Good Sleep from you and, in its place, gave you Brain Fog. I can make you tremble internally or make you feel cold or hot when everyone else  feels normal. Oh, yeah, I can make you feel anxious or depressed, too. If you have something planned, or are looking forward to a great day, I can take that away, too. You didn’t ask for me. I chose you for various reasons: That virus you had that you never recovered from, or that car accident, or maybe it was the years of abuse and trauma. Well, anyway, I’m here to stay!

I hear you’re going to see a doctor who can get rid of me. I’m rolling on the floor, laughing. Just try. You will have to go to many, many doctors until you find one who can help you effectively. You will be put on pain pills, sleeping pills, energy pills, told you are suffering from anxiety or depression, given a TENs unit, get massaged, told if you just sleep and exercise properly I will go away, told to think positively, poked, prodded, and MOST OF ALL, not taken as seriously as you feel when you cry to the doctor how debilitating life is every day.

Your family, friends and co-workers will all listen to you until they just get tired of hearing about how I make you feel, and that I’m a debilitating disease. Some of them will say things like “Oh, you are just having a bad day” or “Well, remember, you can’t do the things you use to do 20 YEARS ago”, not hearing that you said 20 DAYS ago. Some will just start talking behind your back, while you slowly feel that you are losing your dignity trying to make them understand, especially when you are in the middle of a conversation with a “Normal” person, and can’t remember what you were going to say next!

In closing, (I was hoping that I kept this part a secret), but I guess you already found out…the ONLY place you will get any support and understanding in dealing with me is with Other People With Hashimoto’s

PS…I was also sent these little infographics from I Live Lightly, a chick in the Northern Territory. They also capture things in a way that makes me go, hey, it’s the same for most of us!

Perhaps you’d like to share the weird things your AI inflicts and see if you’re no Robinson Crusoe…?

Related Posts with Thumbnails
  • Shanina

    I find the letter depressing. I’ve really struggled to “love my thyroid” (even though it acts up – it’s mine and I’m stuck with it, so there’s no point hating it… I talk to my thyroid.) I start to spiral when I think of my AI as being intentionally malicious… just saying.
    But I love the graphics – nice work I Live Lightly. Pinning them now. x

    [Reply]

    izennah Reply:

    Oh wow, thank you Shanina, what a gorgeous surprise to wake up to! It is so wonderful to be connecting with other Ai Luminaries, as for so long I thought I was alone in the fuzzy~headed, kooky symptom~ed, hypersensitive struggle. I’m Thriving Autoimmune because of the support I found here with Sarah and I’m learning to love my AI Monster everyday, for everything it is teaching me. Thank you for your gorgeous words! Love izennah xo

    [Reply]

    Sarah Wilson

    Sarah WilsonSarah Wilson Reply:

    I love my thyroid too…it’s my teacher

    [Reply]

    Mia Bluegirl Reply:

    I really relate to what you said, Shanina. I too have struggled to love my thyroid, and find it gets worse when I resent it, which doesn’t help!

    In recent years I’ve started to view my thyroid like a toddler, it acts up and plays rough sometimes but it never means to hurt me, it just doesn’t know any better. It probably sounds silly but it has really helped me. Good luck xx

    [Reply]

  • http://lesvanitesdemoira.blogspot.fr/ Moïra

    Dear Sarah,

    I’ve been ill for 7 years now, even if it started 11 yrs ago. I’m in a process with physicians to get to know what I’m suffering from (fibromyalgia, other ???) for the same time, 7 endless years …
    I’m still believed to be depressive, maybe, may-be fibromyalgic ( *me being sarcastic and mostly tired of it all*), that I wasn’t non-tolerant to gluten, I just followed this diet to lose weight ( *of couuuuurse !!! what else ?* ) … I have to admit I let everything down this winter, after once again, another new physician I’d never met, told me I was such a lazy girl and a depressive one.
    I still suffered during this whole winter …

    So I just want to say THANK YOU for this post. Really thank you, that’s the story of my life.
    xoxo
    Moïra

    [Reply]

    MirandaBB Reply:

    Oh Moira what an awful thing to be told, ‘lazy & depressive’ by a ‘caring’ medical professional. It happens so so often I despair that doctors are any good/ much use at all. I hope you find your answers…

    [Reply]

  • seeker

    this post just made me cry. i don’t have ai, in fact i’ve hardly suffered any illness all my life.
    sarah your work has brought a wonderful depth to my life – helping me to understand others more and helping me to be more tolerant of and compassionate towards others, inspired me even more to bring something joyful or healing or happy to others – why should i be so blessed with my health and other gifts?
    i still have ALOT of work to do … it’s a practise! but thank you for what you are doing. and big hugs and love to all those suffering, you are NOT alone, i hope you do find something to learn from it, (and i hope that doesn’t sound patronising), but only to make the journey less despairing for you.
    connection, unity, meaningfulness, lovingkindness, non-judgement … practises worth working on … thank you for reminding us sarah …
    a song for you …
    http://youtu.be/v51OXj96W0g
    xo :)

    [Reply]

    Katherine Reply:

    that is so sweet seeker….thank you for sharing that sweet music too!!!

    [Reply]

    seeker Reply:

    hopefully the music will ease the suffering a bit! it calms me! xx

    [Reply]

    seeker Reply:

    a song for you all i meant, and you too sarah or course! :)

    [Reply]

    Sarah Wilson

    Sarah WilsonSarah Wilson Reply:

    wow seeker. VERY generous of you to feel like that. That’s true compassion, RIGHT THERE! x

    [Reply]

    Mia Bluegirl Reply:

    Seeker I love you. That’s wonderful.

    [Reply]

  • http://www.chattykatherine.blogspot.com Katherine

    Thank you Sarah. I don’t like to think of my illness as a foe either, but this piece from the thyroid forum really hit home for me…I wish I would have written it! And it’s so true, only someone else with these issues can really understand it & it’s good to be reminded that we’re not alone in it! Thank you, thank you, thank you for yet another great post about the struggles of the healing journey!

    [Reply]

  • Stine

    I am so appreciative of these posts Sarah! I feel I was heading down the path were my body was going to continually give me greif for evermore. But ive been reading and taking on board your bits of advice for just living better, not neccessarily just to cure AI. All i can say is im in the best place I have been in for a very long time! I feel great, im exercing and actually enjoying running again and have the skin i had in high school!
    Thank you for you insights and this blog x

    [Reply]

  • Cindy

    This might sound like a really dumb question but here goes.
    I have an underactive thyroid and am on 150mcg of thyroxine per day which I have worked up to over the last 5-6 years (what a lot of stuffing around that has been!). My doctor has never mentioned that I have Hashimoto’s – is it just a given that I have it?

    [Reply]

    Maryann Reply:

    I am in the same position Cindy so thanks for asking the question.

    [Reply]

    Caroline Fagan Reply:

    Cindy, from my (rather recent) experience, it takes a blood test and ultrasound to confirm Hashimoto’s. It sounds like a lot of people out there have an underactive thyroid but Hashimoto’s Thyroiditis is actually an autoimmune disease, and is the next level up. It does sound like you’re on a lot of Thyroxine though: I have Hashimoto’s, only just diagnosed 5 months ago, and am only on 100mcg for 6 days per week, with the 7th day dose being 150mcg. I’m still having 6-weekly blood tests and checkups to balance the meds, increasing doseage as my thyroid function continues to die…
    I would recommend going to the doctor to ask for full blood tests (TSH, T3 and T4 also) and an ultrasound and get your answer that way, then off to an endocrinologist no doubt. Good luck! x

    [Reply]

    Ashlee, AUS Reply:

    Hey guys, My doctor never told me either! I was diagnosed in 2006 – am on 150mcg per day now and down to 3 month blood tests finally. When they diagnosed me originally they just told me to take tablets and get blood tests every 6-8 weeks. I had to ASK my doctor what caused it and what Hypothyroidism was because I had no idea. Still on the waiting list for the endocrin – since I’m non emergent it will take forever no doubt. Your best bet is to ask your doc’s, Cindy & Maryann :)

    [Reply]

    Kate Reply:

    Hey, guys. You can have hypothyroidism (low thyroid) without having hashimoto’s. hypothyroidism means you’re not making enough thyroid, hashimoto’s means your immune system sees your thyroid gland as an invader and tries to attack it. my doctor (who, thank God, seems to be pretty well informed on this stuff) and the internet have told me that you can see if you’re just hypothyroid or hashimoto’s by your TSH levels. TSH stands to thyroid stimulating hormone- basically it’s what tells your body to make more thyroid. if you have hashimoto’s, you’ll have crazy levels. keep in mind, it fluctuates, often your body’s trying to get used to changes or medication or whatever, so your thyroid gland could make extra or not enough, and you could still have hashimoto’s. i know i was diagnosed with grave’s disease (too much thyroid) until i switched doctors and my new doctor said that my body was just trying to figure stuff out with my hashimoto’s. so that could be something for y’all to check out =) take care!

  • Meg

    Thanks for this. I need to hide out more and more I think so I can be as sparkly as I used to take for granted, and I’m finding it tricky. Any more ideas on how you resist your natural instincts to listen to your body and rest, even if there’s something you want to do more would be great. Meg

    [Reply]

    Caroline Fagan Reply:

    I’m the same as you Meg. I need to tone everything down and hide out in order to be, at least temporarily, as ‘sparkly’ as people without Hashimoto’s can manage on a daily basis. But how to forcibly rest the body and tame the monkey mind?… Meditation and mindfulness go a way towards this, but even just trawling the surface of life in today’s frantic world can be too much some days. I don’t want to have to keep retreating to my cave for hermit time but I’m not sure how else to manage it. Anyone else’s tips would be most welcome…

    [Reply]

  • Lucy

    I have only just recently learned about what an auto immune disease is. i had no idea there is over 80 of them? and i have one of them, im 24 years old and have been suffering from severe psoriasis for many years now and have low iron levels and an underactive thyriod. which my doctor thinks it could one day lead to hashimotos. (they say AI come in threes, i hope there isn’t a third) i started getting really tired all the time last year when i got tonsillitis over 5 times that year! – my immune system totally shut down and my psoriasis spread through pretty much all over my body and really bad on my hands, after going to the skin specialist and finding out i was lactose intolerant i made the decision to go paleo to see if it improved my skin and thyriod. i also started taking iron supplements to get my iron levels back up to normal. finally after 7 weeks of going paleo i have noticed a major difference in my iron levels, how much energy i have and my skin has shown a 80% improvement! i can’t believe just changing my diet could change so much. i will never go back to consuming the amount of dairy & gluten i was consuming as it just does not agree with my body. had my thyroid levels tested the other week and the levels are back to normal so wont have to go on thryoxidine. i really didn’t want to have to resort to medication. Anyway, i guess im sort of lucky i’ve caught it early and now know what to do to keep it all under control. There is no cure for these awful Auto immune diseases, but just to find a happy balance in your life where you can keep them under control is a step forward. Anyway, just wanted to share my story and i hope you all find your happy balance to health. :)

    [Reply]

  • Ivy

    What a great post, Sarah, and comforting to AI-sufferers, no doubt. I was heading towards Hashi’s, I think I stopped my bad ways before I got there, but I still have weird symthomps like extreme hair loss,occasional fatigue, air hunger etc. Tested T3, T4 and reverse T3 last week, that should give me a better idea of where I’m at.
    Have you looked into cold thermogenecis in order to heal? It is supposed to work very well combined with infrared saunas, and basically promises to eliminate hypo thyroid symthomps over time. Worth looking into… CT is getting big in the Paleosphere! I’ve done it daily for 5.5 weeks with amazing and puzzling results.

    [Reply]

  • Maria Mellick

    I have been on Oroxine for amny years and my GP has suggested that I willl feel better on T3. Specialist agrees with oroxine routine/ Feeling so tired at the moment. Not sure what to do. Maria

    [Reply]

    Sarah Wilson

    Sarah WilsonSarah Wilson Reply:

    I tried t3…worth a go. stay in touch…I might have more ideas for you…

    [Reply]

    Maria Reply:

    Tomorrow I will go ot my GP & his sugestion is for me to take T3 only. Have you or anyone else tried this? I am a bit concerned that I may feel worse. Help anyone? I know nobody can make my decision, just need to relate to someone that may have tried this.

    [Reply]

    Laura Reply:

    Maria, I have been taking T3 for 4 months and the positive difference it immediately made for me is incredible. My metabolism rate increased, I no longer suffer from insomnia, my hair isn’t falling out at the same rate as it did when I was on T4 (Oroxine), I am more positive, happier, energetic, my depressive symptoms are not as severe (in fact my endocrinologist told me T3 is also prescribed by psychologists in some instances to treat depression).

    BUT – T3 administration is difficult in as much as T3 is a POTENT thyroid hormone, and requires very frequent monitoring of blood tests and if, like me, you have Hashimoto’s, I believe that includes testing for thyroid auto antibodies as well. Patients receiving T3 should expect unusual lab test results of thyroid hormone levels. Happily, my thyroglobulin Abs actually decreased !!!

    STRICT compliance by the patient according to their doctor’s instruction is essential. I started with a very small dose, divided into 2 and recently 3 doses throughout the day. It’s a very slow process getting to your optimum dose but it is critical to take it slowly. Also not easy to break the tiny 20mcg tab into much other than 2x10mcg doses, so it gets tricky and you need to take care being precise with your dose.

    T3 is rapidly absorbed in the gastrointestinal tract in just 2 to 3 hours after ingestion, hence the need for divided doses, so be prepared – success with T3 means the hard work is your responsibility and if your dose needs to be divided to work effectively for you then YOU must be prepared to work your daily routine around taking your T3 dose.

    As I wrote in an earlier response, I strongly recommend as essential reading (290 pages) Paul Robinson’s book, ‘Recovering with T3′ for any patient and their doctor if considering the use of T3. A lot of important information including the association of the adrenal glands and hypothyroidism, vitamins and minerals etc. The best $46.00 I’ve ever spent with Booktopia, and I share my copy with my GP.

    You are very fortunate in having found another rare wonderful GP.

    Carla Reply:

    I am currently taking t3 @100mcg. My gp is freaking out and wants me to stop all meds and then see her in three months. I can’t go backwards. The t3 works for me…what else should I be doing? What other ideas do you have for Maria?
    Thanks,
    C

    [Reply]

    Laura Reply:

    Carla, was that a typo or are you REALLY taking 100 micrograms of T3 (available as Liothyronine sodium in Australia) daily?

    No wonder your GP is freaking out. 100 mcg daily seems an extraordinarily high dose and a very risky one.

    I am taking 30 mcg daily in two divided doses. My dose has ALWAYS been established by my endocrinologist.

    STRICT compliance by the patient according to their doctor’s instruction is essential.

    Excellent information available on T3 is in Paul Robinson’s book, ‘Recovering with T3′. There is also valuable associated information available on the author’s website.

    I strongly recommend you check out that website, same name as the book, and while you are waiting for your book, read all the info on that website. It’s important for both you and your GP to understand as much as possible about T3 because it is a very potent form of medication.

  • http://ilivelightly.com/ izennah

    Oh wow Sarah! Thank you for featuring my Glittery Graphics, and for your general gorgeousness ~ what a wonderful surprise! Your words & sassy style have been my Accomplice, and have kept me going everyday of this mad journey.

    Today is my Live Lightly 6~monthiversary. I started it the day I returned home to Darwin, to mum and dad, a crumpled mess, 26, SO sick, with no idea what was wrong. Now I’m Thriving Autoimmune, the brain fuzz is slowly lifting, Live Lightly became my sanctuary, a place for di(solve)ing my fear monsters, step by scary step. I never imagined that it would open up a world of Kindred Spirits!

    Although I’ll be elegantly balancing the AI Sundae for the rest of my Sparkly life (by which I mean trying not to completely overdo it, then trying not to act surprised when I do, and my Body yells at me), and it will take years to slowly rebuild my strength from the complete mess that 26 years of Severe Food Intolerance misdiagnosis caused (harsh words!), in a couple of months I’m going to be strong enough to move back to Melbourne to start my new life as a relatively healthy girl. I am so so so grateful for everything this st(illness) teaches me everyday (even when I act like a petulant brat).

    Thank you for reminding me not to Robinson Crusoe it ~ if I’d listened to this advice years ago I would have fallen into such a hot mess!

    Luminary Love,

    izennah xo

    [Reply]

    Sarah Wilson

    Sarah WilsonSarah Wilson Reply:

    CUTE! I like the auspiciousness of this timing! Darwin…does the heat help?

    [Reply]

    izennah Reply:

    Serendipitously smitten! Coming home to Darwin was the best thing I could have done. Aside from being spoiled rotten by my family, the heat really took the pressure off my thyroid, system when it was at it’s most fragile. My Doc is still a bit iffy about me returning to Melbourne in Winter but I miss my pals too much :D I’ll be the kooky girl wearing 15 layers of thermal underwear ~ Cute! If the whole AI / crazy food intolerances thing wasn’t enough of a turn on ;D the boys will be knocking down my door! xo

    [Reply]

    Mia Bluegirl Reply:

    I love your infographics so much! So beautiful.

    And I feel you on the thermals. Hehehe :)

    [Reply]

    izennah Reply:

    Hehe, thank you gorgeousness! Love izennah xo

    [Reply]

  • Nad

    I was on T4 for 4 years and always felt very bad. 3 months ago i asked my endocrinologist to put me on T3 and T4 combination (Diotroxin). What a difference it has made. If someone told me now that i have Hashimotos, i would not believe them

    [Reply]

  • Mia Bluegirl

    Sarah, the we’re-all-in-this-togertherness of this post made me cry. Thank you thank you thank you.

    Weird symptoms are sometimes funny. Not feeling so isolated and being able to hear other people’s stories means so much. Thank you for the healing, you’ve truly warmed my heart. X

    [Reply]

  • Emma

    I was diagnosed with Hashimoto’s when I was 15. A year later my mother was diagnosed with a different AI disease and I became her carer when I finished high school, 3 months after I turned 17. I was her carer for 5 years and she eventually passed away from her illness in 2007 a few months before I turned 22. Before she passed away I didn’t really have too many problems with my own illness (maybe because I was focussed on her and wasn’t really taking notice of me?). Since she passed away I’ve been noticing my Hashi’s a lot more. I find that I don’t feel “strong enough” to do a lot of the things I could do before she passed away. I started working full time for the first time in October 2011 and ever since I’ve been in a bad way with my AI. Alot of the bad flare up days. I’ve found it really hard especially as my co-workers don’t understand about it. I have really enjoyed reading this website and reading the stories of other Hashi’s and AI people. Thank you Sarah for being there to bring us all together.

    [Reply]

  • http://vanillawater.blogspot.com A.

    Thank you so much for this post. It is a relief not to feel isolated.

    [Reply]

  • http://svasti.wordpress.com Svasti

    I was diagnosed with Hashi’s only around 12 months-ish ago although without a doubt, the symptoms had been raging on for at least a few years before that. It was only last year that I got really, really, really sick.

    Mine was definitely caused by trauma (can you say PTSD, anyone?) – which occurred in late 2005. For a while, it felt like a kick in the teeth to heal myself from PTSD only to discover that trauma wasn’t finished with me yet!

    But now, I too see this whole thing as a learning experience. In fact, I was chatting on Twitter about it with another yoga teacher today. She has Graves. We both agree that being “forced” to take care of ourselves is a blessing, but it has also profoundly influenced how each of us teaches yoga. I’ve started comparing my style of “slow yoga” to the “slow food” movement… yoga doesn’t have to be all fast/vinyasa/power flow/hot yoga in order to provide the benefits of strength, stability and calmness. In fact, I’d suggest those things aren’t as useful as “slow yoga”, especially for AI types.

    Also, my compassion for the illnesses of my students has grown through taking care of my own health. The more I understand, the more understanding I am, if you get my meaning.

    Luckily, via reading Sarah’s blog and others, as well as having a very fortunate network of carers and connected friends (people who know people), I’ve found the right specialists to help me heal. I have an amazing Naturopathic Doctor here in Melbourne – someone who was trained in Canada. The ND training there is NOT the same as naturopaths here! My ND is a qualified GP as well as a naturopath, and she has an impressive body of knowledge when it comes to AI conditions.

    I found my ND in January of this year, so I feel very lucky about that. I had one or two horror specialist stories, but that’s all.

    That said, I’m aware that I’m only at the beginning of this journey. Right now, I’m faring really well. I went through an absolute horror patch and every now and then have bad days. But the better care I take of my health, the more stable it becomes.

    I can’t express my gratitude enough to you Sarah, for writing the AI posts you write. The online world (blogs and Twitter) have made me feel like anything but a Robinson Caruso. Also, the more I talk about it, the more I discover that friends, or friends of friends out there have or know someone who has a thyroid problem.

    An ND friend of mine in the US has started to call AI and especially Hashi’s an epidemic. I don’t think she’s wrong. We all need to slow down. Not just AI types…

    [Reply]

    MirandaBB Reply:

    Would you be happy to share the name of your nd/gp? Good, understanding ones are hard to find! Thanks

    [Reply]

    Maria Mellick Reply:

    Unfortunately my GP is not able to take new patients unless they are staff at the university where the Medical centre is.

    I wish there had of been a forum around like this for me 30 years ago when I was diagnosed. It took 5 years to get my diagnosis and many drugs were prescribed and many friends? were lost during this time. If it had not been for my gynaecologist to take a long shot, as he put it, to give me a blood test. I think I would be dead or diagnosed with Mental illness. Lately the tiredness is dreadful so that is why I may need a medication update.

    maria

    [Reply]

    Svasti Reply:

    Hi Miranda,

    Feel free to email me at: svasti108@gmail.com

    I’d be happy to share my ND’s details privately. I’d share in the comments here but I’d have to ask her first!

    [Reply]

  • Meg

    I’m just wondering if anyone else here experiences the bind of an underactive immune system causing chronic infection (mainly respiratory for me) / an overactive immune system that results in allergic asthma?? While a lot of the info about hashimotos applies to me in terms of the need for an altered diet, lots and lots of rest etc, I would love to chat to someone who has similar symptoms to myself as I can see how much comfort it can bring…
    Thanks as always,
    Meg

    [Reply]

    amy Reply:

    Hi Meg, I have struggled with the same things for at least 15 years, and was only recently diagnosed with AI. I have been working closely with a Functional Medicine Doc in the US to help heal my gut issues that have led to the AI diseases, chronic infections etc. Through this treatment we also discovered that I have very, very low cortisol and my neurotransmitters are off–all connected to gut and major food intolerances. Going gluten and dairy free has dramatically helped my chronic infections and asthma/sinus issues…with the right diet, supplement protocol, change in lifestyle, change occurs, but very slowly…I am only six months into it, but keeping the perspective that I will always need to be gentle with my body! With the help of homeopathy, I’ve also been able to recover from infections—before the diet change, even homeopathy would not help. But all the changes mentioned are beginning the healing process!! Best to you, Amy

    [Reply]

    Meg Reply:

    Wow thanks so much Amy – it does feel amazing to connect with someone about this, particularly all the way across the world. Am seeing a wonderful naturopath so will discuss this with her, and the holistic doctor I’m seeing has been recommending homeopathy, but I am sill a bit sceptical… Were you once sceptical about homeopathy? How have you come to embrace it? Best right back to you, Meg

    [Reply]

    amy Reply:

    Yes, this is SO encouraging! I love what Sarah has done with her blog. I was quite sick about 11 years ago after being in a car accident. Like the letter in this post, it triggered my AI at the time, but it took 11 years for an official diagnosis! No drugs were helping, and I got diagnosed with Fibromyalgia. I ended up with a Homeopath per recommendation of a friend. Within a month of being treated with my “constitutional remedy,” I was feeling much better and able to lead a normal life. I even worked and attended Grad School full-time. I had been on five different allergy/asthma meds for at least ten years before, and over a period of three years, with Homeopathy, was able to ween off all of them. I was drug free for about 7 years until I had my babies. Two pregnancies close together and a stressful couple years triggered my most recent episode. I was sick and had one infection after another and homeopathy would clear my sinus’, even when the antibiotics would not, but then I’d get another cold and get another secondary infection…not until this more recent treatment and diet change have I been able to heal from this flare up; although, I’m still waiting to get fully healthy again. It will just take a long time to reverse 33 years of cumulative food intolerance damage. Both my sons have not needed any antibiotics for croup and ear infections since I started them on Homeopathy as well. My son was in line for tubes in his ears because of five consecutive ear infections. As a last ditch effort, I decided to try homeopathy on him. The Homeopath gave us Chamomilla; I brought him back to the Doctor, and within three days his ears were clear. It has been four years and he has never had an ear infection again! He was only 7 months at the time.
    So I am pretty sold on Homeopathy. I have seen it work when nothing else will…on me and my babies. The key is getting a good Homeopath that is super intuitive. I know the whole thing sounds a little strange, but it has kept our family healthy! Let me know if you have any more questions! Amy

    helix Reply:

    Hi Amy would you be happy to share the name.of.your homeopath by any chance?

    [Reply]

    amy Reply:

    Sure! My homeopath is Dr. Timothy Fior, Center for Integral Health, Lombard, IL. I believe that he takes long distance patients. Best of luck, Amy

    Mia Bluegirl Reply:

    I suffer constant infections too, but mostly bowel/ bladder. Very frustrating. I’ve had several courses of antibiotics this year.

    [Reply]

  • selena

    thanks for sharing Sarah,
    This post really does sum it up! It is all encompassing…the only things it didn’t cover was the puffiness, tummy troubles, hoarse/lost voice, dry flaky skin (esp around neck), flare up of rosacea (this one probably crosses over into other AI issues…but I am finding a degree of overlap) and how difficult (new) close r/ships can be (full disclosure of non-’normality’ vs weird avoidant strategies to hide transient energy issues). I find my thyroid plays up when I need my energy the most…when I am busy with important deadlines….and the more I push, the more my body pushes back. The inconsistency and inability to make solid plans is what I find most frustrating. I struggle with recalibrating – my personality is still very go-getter strong-willed, but sometimes my body/energy lets me down.
    Thanks, your blog continues to be a great source of information and support x

    [Reply]

    Svasti Reply:

    Selena, I very much relate to what you wrote:

    I find my thyroid plays up when I need my energy the most…when I am busy with important deadlines….and the more I push, the more my body pushes back. The inconsistency and inability to make solid plans is what I find most frustrating. I struggle with recalibrating – my personality is still very go-getter strong-willed, but sometimes my body/energy lets me down.

    VERY MUCH

    [Reply]

    selena Reply:

    thanks Svasti,
    I am sorry that you too are experiencing this internal conflict and thank you for your message of relatedness – it feels good to be understood :)
    I find I have to be very conscious of how my waning energy can be perceived, especially at work or when catching up with people.
    I am curious to know if have you ‘recalibrated’ and made life choice changes or if you instead have tried to continue on, pushing through?
    Selena x

    [Reply]

    Caroline Fagan Reply:

    Selena, the ‘tummy troubles’ are definitely something I can relate to, and have been grappling with for years. I would also like to see more on dealing with chronic bloating, constipation and just a feeling of general sluggishness in the stomach.

    Meg Reply:

    Wow, thanks so much Amy. About to go camping for easter so a great time to think and take stock of this advice. :) WIll def ask more questions on my return!

    [Reply]

  • lizzie

    Thank you for your post on Hoshimoto’s. I have had off and on thyroid problems since I a was young but it wasn’t caught and diagnosed until it got so bad after I had my son that I was almost hospitalized. It has been a hard disease to get under control. I have years of feeling like my family thought I was crazy, and I started to feel crazy. I seriously thought I had a split personality. But now that I am on medication and I have had a lifestyle change of no soda.( carbonation seemed to make my body not absorb the medicine well, because I’m on such high doses) I finally feel normal and that I know who I am and I except the fact that not everyday is going to be a good one and its ok:-)

    [Reply]

  • V

    To those who are frustrated with being told they’re depressed, bipolar etc, what’s the symptom/feature that finally makes the medicos say ‘OK, you dont have a mental illness, you have AI’? 

    Sorry for the ignorance but I find this is the only honest place to learn about this stuff.

    [Reply]

    Michelle Reply:

    Hi V,

    I have been diagnosed with hashimotos and at the same time told my doctor I felt like I was having a nervous breakdown. Ie depression and axiety issue. I was told it was stress related and put on anti depressants and given thyroxine for “subclinical hypothyroidism” (subclinical because my TSH was above normal but my FT4 was low but still in range although I had most of the text book symptoms). When I asked whether my depression might be related to my thyroid or hashi she just said my thyroid levels weren’t low enough to cause depression (Both my hashi antibody levels were very high. I might add my depression isn’t severe depression – just mild to moderate. I’m convinced it is due to the underlying Hashi’s from all my reserach on the topic. So I guess to answer your question my octor will only say its not its due to hashi until your thyroid levels are really low. They don’t seem to feel that Hashi’s alone has anything to do with symptoms.

    [Reply]

    V Reply:

    Thanks Michelle!

    [Reply]

  • Linda

    I’m writing this from the other side of the fence – my husband is the one suffering from some undiagnosed thyroid disorder, and I along with our three small children (5, 3 and 9 months) have been taken along for the often bumpy ride. After three years of being ‘diagnosed’ with anxiety and medicated for it, a lump appeared on his thyroid. Our GP indicated that most lumps were benign and it probably didn’t mean he had a thyroid disorder, and that it was still probably just (just?!) anxiety. So he was sent away for bloods and a scan, and the doctor informs us that it is a just a cyst and ‘cold’ nodules and is having no impact otherwise. After doing our own research on thyroid disorders, we were adamant that this is what he had, so her advice was extremely disheartening and frustrating. My husband never felt that anxiety was a correct diagnoses for him, but in frustration took the meds, even though they didn’t really help and only caused more issues. We got referred off to the public hospital, from which we received a letter that we couldn’t even be given a date for an initial appointment because the waiting list is so long.

    Anyway, by some sort of miracle we came across another GP who has a real clue about thyroid issues. He said that it is without a doubt that my husband has a thryoid disorder, not just a cyst and cold, inactive nodules. He told us that the blood test result history screamed thryoid issues 3 YEARS AGO, long before the lump appeared, at the time he was disagnosed with anxiety!

    Although he hasn’t yet got his diagnosis (we are off to the Endrocrinologist next Friday), we have prepared ourselves for anything. It’s a relief to finally be taken seriously. The last few years have been some sort of hell. My husband has often thought he was losing his mind, and to be honest, I have thought that too. We can’t wait for a day when he isn’t controlled by the fatigue, incessant diahorrea, night sweats, panic attacks, brain fog, insomnia, major weight loss (and now weight gain), psoriasis and carpal tunnel of this thyroid disorder and when we can control it, to some extent at least!

    So this letter is from my husband’s thyroid. Bastard of a thing it is. We’re not at the friend’s stage just yet! But thank you Sarah, it’s nice to know we’re not alone in this!

    [Reply]

  • Karen

    Thank you Sarah, this really resonated with me. People interested in exploring any possible link between AI and past trauma may find Pat Ogden’s work of interest, including a new trauma model. There are specific trauma release approaches available such as sensorimotor therapy. This has proved pivotal in diminishing my symptoms (endometriosis in my case). Anyone in Perth, I know of a great therapist who uses this technique.

    I also read Deb Shapiro’s book recently on the emotional dimensions of illness and one of her prompts for reflection on AI was ‘how have you become an enemy to yourself?’. It may not resonate with everyone, but it certainly struck a chord with me when I reflect on my journey.

    It’s still a work in progress but I am slowly starting to get what this is all about for me. I’m very grateful to have found the wonderful support, advice and honesty in this blog!

    [Reply]

  • Laura

    Hi Sarah,
    After years of ineffective T4 (Oroxine) treatment for Hashimoto’s I’ve recently been prescribed T3 (Liothyronine) and the positive difference so far is all good news. Getting the dose right is indeed the hardest part. As Hashimoto’s is insidious, I didn’t realise how rapidly my health had deteriorated until I started feeling instantly (within seven days!) better on T3.

    I’m interested in any news you have about T3 (Liothyronine sodium). I bought Paul Robinson’s Book, ‘Recovering with T3′, in order to gain an insight into this brilliant, powerful thyroid hormone. Fortunately I’ve found a wonderful endocrinologist and GP and the information in Paul’s book is essential reading (290 pages) for any patient and their doctor if considering the use of T3, helping us to understand the importance of the hormone T3 and how ineffective the standard T4 treatment is for some AI sufferers.

    [Reply]

  • Irena

    Hashimoto lives at my house !!! WOW what a descriptive letter. How many planned days were spoiled by you Hashimoto but I am now learning to live with you. NOONE understands unless they live through it.

    [Reply]

  • linda

    Is polycystic ovarian syndrome an autoimmune disease?

    [Reply]

  • Miranda

    Not sure if this is the forum to post my comment, but although i don’t have an AI Disease, i do suffer from IBS, Fructose malabsorption, lactose intolerance, gluten intolerance, and a salyicilate and amine sensitivity. I am currently going through the RPAH Elimination DIet for the second time and am at my whits end. However i am slowly reading through the e-book integrative Nutrition by Joshua Roesenthal – Sarah gave us the chance to download it free just recently and I am absolutely overwhelmed with good thoughts. He says that we – our own body- is the key source to discovering any issues that we have – we just have to listen and be in tune with what it is that our body needs. I am continuing my reading and am hoping that by increasing my ‘awareness’ and really ‘listening’ to my own body – and reducing the ‘volume’ of the professionals and/or books etc I will recognise what it is that i need to do to heal my body – as I have often said, unless we can actually get inside someone else’s body, what our body does and how it reacts is our ‘norm’ and if your ‘norm’ is not healthy then only you know how to fix it. Here’s hoping that I can start healing and feel better if I simply listen and respond in a caring and nurturing way.

    [Reply]

    MirandaBB Reply:

    Hi Miranda – nice to meet a fellow ‘name sharer’! I also share many of your gut issues – IBS, fructose malabsorption and gluten intolerance. As it sounds like you are at your wits end I thought I’d share my findings that are slowly making a difference to me. I was diagnosed with two biochemical imbalances: pyroluria (also known as Pyrole Disorder) and undermethylation. The first is when your body gets rid of too much zinc & B6. These nutrients are really important for a whole bunch of functions & chemical reactions in the body so when out of whack can lead to all sorts of mischief. Often if you have pyroluria you also have undermethylation or overmethylation issues. Methylation status is a measure of the rate of the methylation cycle – the conversion of homocysteine to methionine. Your body can be doing it too fast or too slow. Treatment is with high levels of supplements – and the right sort. Because treatment doesn’t use pharmaceuticals it isn’t widely known about/ accepted in medical circles but there are growing numbers of knowledgeable gps in Oz. Anyway I encourage you to do a google search and perhaps join the closed FB page: http://www.facebook.com/groups/pyroluria/ as there’s lots of great info on there. PM me if you’d like more info (Miranda Brash Brenan).

    [Reply]

    Sandra Jelavic Reply:

    Hi,
    You mention above about over/undermethylation and pyroluria, I have “borderline” pyroluria and the doctor does not think it needs to be treated. But I was wondering if you know of a very good doctor as well as a natropath that knows all about over/undermethylation and pyroluria. One doctor said I have over and the other doctor at the same clinic said I had under so I am in need of a second opinion but even better would be a natropath who knows all about the above topics i mention.
    As well as adrenal fatique and thyroid issues. I am hoping you can help me.
    Thanks, Sandra

    [Reply]

    Miranda Reply:

    Hi Sandra I would definitely recommend joining the Pyroluria fb group. There is a wealth of knowledge there, as well as some suggestions for practitioners (and a few practitioners add comment there too). The pyroluria test can be flawed as the kryptopyroles in the urine are light & heat sensitive so the lab must handle correctly (Safe Labs in Aus are the best). Also looking at your zinc:copper ratio and free copper readings are important. The methylation aspect, while a seperate issue from pyroluria, is important. Your methylation cycle is the engine room of your energy cycle and when that runs too fast or too slow it has an effect on other parts of the cycle & can impact thyroid & adrenals. Like I said request to join the fb group – I have learned so much there. Hope to see you there soon.

    Sandra Jelavic Reply:

    Hi Miranda,

    Don’t suppose you can help me further you see I don’t have facebook (I know we are a rare breed these days) would you be able to just give me a name of a natropath that understands Pyroluria I am based in Melbourne. I would really appreciate it.
    I understand what you are saying with copper zinc, I have low copper on a hair anaylsis and high copper on my blood test. So don’t know if i have high copper or low copper now.

  • Erica May

    I’m just sick of people saying that I’m probably pregnant when I talk about how sick I am. One, because I do not have the energy to do anything of the sort, and two because because of chemo years ago I don’t even know if everything is all fully functional.
    My doctors are still exploring things, and waiting for my doctor to get out of hospital (Ironic I know) and he’s gonna do some thyroid tests. Not entirely convinced it’s just the wishy-washy diagnosis of post-viral fatigue they’re giving me. I don’t care if I actually have something if I knew what that something was instead of just feeling crazy when I go to the doctor.

    [Reply]

    Irena Reply:

    Hi Erica
    A good friend gave me a book to read recently called “Tears Behind Closed Doors” by Diana Holmes. She suffered from a serious of medical problems for many years (~20) – mostly incorrectly diagnosed by many doctors – ending up in a wheel chair. Her medical condition was an underactive thyroid. Her book is inspirational and a lesson for anyone who is suffering to perserve until you come across a doctor who cares. Well worth the read and she is now healthy. Good luck.

    [Reply]

  • Melody

    Hi Sarah, I notice how active you are, outdoors. I have a mild case of SLE and have been told by my rheumatologist to stay out of the sun (not more than 20 mins) as it’s bad for my condition. Do you know if this “rule” is a general one for those with AI?

    [Reply]

  • http://crunchyprogressiveparenting.blogspot.com/ Deb

    Thank you so much for this post! I’m totally adding you to my own blogroll now. :-)

    Hashimoto’s came to live with me a couple years ago, probably, but it was a while until I managed to switch endocrinologists to one who didn’t patronize me and just hand me a script for more T4 and who instead took the time to do the bloodwork to check for the antibody and do the ultrasounds. Unfortunately, the T4 was messing with my blood pressure, causing major anxiety attacks, and giving me migraines, and i was the only one who seemed to think this was a problem. My GP was prescribing me beta blockers for the BP issues (which left me comatose and unable to function, let alone work and parent), AD’s for the anxiety (which had their own side effects), and oh, the dietary advice was insane! :-( And sadly, while I have the better of the two endocrinologists in my health plan (which is sadly American and therefore rather limiting :-(), she won’t even consider T3 treatment, although I’m considering trying it at my own expense depending on the results of this year’s annual physical and related bloodwork, which will be occurring in the next week.

    It’s a good thing I found while doing my own research that one AI condition can often lead to others, so I went off gluten (except trace gluten) and pretty much went Paleo; turns out that celiac and gluten intolerance seem to occur at a significantly higher rate among Hashimoto’s patients than among the general population. Thanks to what my friends in the medical profession disdainfully refer to as “Doctor Google,” I’m now OFF the T4 completely, OFF the beta blockers, OFF the antidepressants, no more bloating or other digestive consequences from my food, AND I’m down 20 pounds. I still get sick now and again, especially when I stray from the diet (road trip this past weekend and a gluten-filled treat I haven’t had for nearly a decade have me a wreck today, but I have only myself to blame :-\), but by and large I’ve been (knock wood) asymptomatic for a year and a half except for the odd blip I attribute to my monthly cycle (perimenopause only complicates the equation LOL).

    So when people ask me why I’d resort to such an “extreme” diet as Paleo (and yes, I laugh my head off when they say that LOL), I have another post to refer them to. The Sundae graphic in particular should really answer their questions, as that was my life as recently as a year and a half ago, and I don’t miss it now that (for the most part) it’s not like that for me any more – and I want to keep it that way!

    [Reply]

  • Wendy

    Sooo frustrating. Have dealt with hashimotos for 20 yrs. Now being tested for SLE. Feels like my muscles in my legs need to be cut out. The lethargy and sad moments are getting worse. I’m eating Paleo. Recently
    have discovered my PH is way to acidic. Anyone dealt with this?……. Mice to read that I’m not alone.

    [Reply]

  • Pingback: Happy six-month-iversary LivingLIGHTLY |

  • Tanya

    Soo…… this looks like a great place to find some kindred spirits! I have an AI that has just been diagnosed after a rotten six months comprised of: facial paralysis, throat paralysis, severe damage to my eye due to paralysis and terrible weight gain in a matter of weeks, seriously like close to 20 kg. I was kept in hospital for a week of no use tests and an incorrect diagnosis, got worse to the point my eye needed to be sewn shut, had facial biopsies taken, which as it turns out have been my saving grace, and a camera from both ends meeting in the middle! So thanks to my very strange combo of Dr’s including a Gyno, Endo, Dermo, GP, and Optho, I now know that I have Melkerson Rosenthal Syndrome, which according to available info, only affects skin and tongue with one random mention of food allergys. Ha bloody Ha, doing research and finding the other known sufferers (around 15 worldwide), we have discovered we all have Gluten intolerance, sugar, sals, amino, just about any preservative you can think of, Fructose and a serious Lactose intolerance and the list continues as I eliminate things. Good news however is my eye did not get sewn shut after I cut out Gluten, My face is slowly reactivating and is my best gauge of allergy reactions, I have lost 15 kg in a month and I have found the nicest Naturopath in the world who is supporting my strange quest to heal myself. I also have been given a fairly good chance of developing Hashi’s like my mother had and have had PCOS for the whole of my adult life. I feel that this has many links to other AI’s and is really overlooked by the medical community. So right now I feel a whole lot better, thank God and I will continue my journey with composure and what I hope is a whole lot of Grace!

    [Reply]

  • http://www.campthunderbunny.com Jenny

    I read this and cried. This explains my life for the past 6 months. I’m still learning how to deal.

    [Reply]

  • shosho

    Hi everyone.
    I have just purchased Sarah’s book and then started reading everybody’s comments…I must say after having been strictly told by my doctor ‘never to google Hypothyroidism’ as it would scare me, I do find this very comforting to know that other people feel the same :)

    I was diagnosed with an Underactive Thyroid about a year ago and have been on 100mcg thyroxine since- but recently the brain fog/muscle aches/nausea and all the other lovely symptoms have increased dramatically. I’m wondering whether I actually have Hashimotos, as before the Hypothyroidism symptoms started I had a few years of high anxiety and marked weight loss for no reason.

    I have had my bloods done again so all may become clear, but does anyone know the name of the particular blood test that would indicate AI as opposed to just Hypo?

    I am about to start the I Quit Sugar regime. I recently started a nutrition degree after developing a sneaky suspicion that lifestyle has a huge part to play in all of this.
    Can I put this question out there- how do people get on with alcohol avoidance in this drink-obsessed society I have a funny relationship with alcohol where I know it makes me feel terrible, yet it is so tempting to indulge when you know it is the only thing that will get you through a social even and reinstate that elusive ‘sparkle’. ( feel so ashamed to admit this)
    x

    [Reply]

    laura Reply:

    Hi, the two blood tests I have done regularly are: Microsomal Ab (range is 0-35) and Thyroglobulin Ab.(range is 0-115). Both of these tests will indicate the state of health of your thyroid autoantibodies.

    You usually have to request to have your autoantibody levels tested as, it seems, many G.P.’s prefer to be guided by the TSH levels alone.

    Treating your thyroid autoimmunity directly (too dangerous) if abnormal because the cure is worse than the disease but don’t be alarmed at your figures, eg. my thyroglobulin Abs have been as high as 719 (should be between 0-115.) and I’ve read that some peoples’ readings can be in excess of 1,000 !

    After being on T3 (Tertroxin) instead of T4, (Thyroxine) for 12 months, my autoantibody levels, though still not normal, have noticeably dropped without the help of other meds.

    Best of luck, Laura

    [Reply]

  • Irena

    Hi, Hashimoto sufferers – is it common to suffer with lower back pain constantly? This last year my back seems worse than I ever remember. Seems like my “skeleton” and “muscles” (for lack of a better description) don’t belong to the rest of me !! Would love hear if anyone has remedy for this.
    Thanks
    I.

    [Reply]

  • Sari

    I have just read the letter from Hashimoto.

    My name is Sarah, Sari to those I love.

    I have Sarcoidosis.

    I was diagnosed in May 2010 after 5 months of persistent discussion with my GP. The average time from symptom onset to diagnosis is 5 years. I got lucky. My symptoms were so completely random and my GP had learned through his many years of experience, to trust his patients when they say something is wrong.

    After more tests than I can remember, my friends, colleagues, flat mates and some of my family members had started saying that maybe I was over thinking it. Maybe there really wasn’t anything wrong and this was a “forest for the trees” thing. Maybe I just needed to let it go.

    I had already let go of running. My feet had decided that the pain of trying to fold themselves in half was the priority. I had also let go of swimming. My cough was so severe that I now needed a Ventolin puffer just to climb the stairs in my house. I am not an asthmatic. I had let go of touch football because I couldn’t walk for a day after. I had let go of sleeveless tops and short anything in warm weather because the pain in my joints cried out for the heat of a jumper, fleece track pants and gloves. I live in Queensland. I had let go of nights out, dinners out, and Sunday breakfasts with my friends because I couldn’t fight the lethargy that pulled me to my bed, the couch, the recliner in the tea room. I had let go of the dignity and right of a human to take a sick day because my colleagues, peers and boss were starting to comment on how well I looked “for someone who needed so many sickies”. I am a registered nurse.

    I am told to take steroids and a chemotherapy agent “just for a trial period to determine efficacy…two-and-a-half-years should do it”. I am 35 and planning to start a family. I am told I am crazy for refusing the advice of a world leading specialist.

    My colleagues and family look at me with pity and sadness. I look back at them with relief. I have an answer. I can make a plan.

    I am refusing to let a disease dictate my life.

    I am choosing to have a family. I am choosing to have skin that will tolerate friction, I am choosing sunshine. I am choosing my hair. I am choosing my immune system. I am choosing to have faith in my instincts that tell me that this is fixable. I am choosing quality of life, and have just enough faith to choose to believe that this will mean quantity of life.

    I chose to stop eating sugars, meat, nightshades, caffeine, alcohol, dairy, and starches with my proteins. I chose a path that today, suggests remission.

    To hashimoto, sarcoidosis, and any other AI diseases that can take a persons joy, their life, their faith and worst, their hope: I am not a victim. I am a force to be reckoned with. You can’t own my good days, my bad days, my heart, liver, kidneys, bones, vascular system, lungs or mind.

    My name is Sarah. Sari to those I love. I am 37. I am a wife, a nurse, a mummy. I am not a victim.

    I don’t need a puffer. My heart, liver, kidneys, bones, vascular system and mind are untouched. My lungs have not deteriorated.

    I have sarcoidosis…for now.

    To all my fellow non-victims; love, light and strength. xoxo

    [Reply]

    Leanne Reply:

    So well said Sarah (Sari)!

    That has inspired me so much

    Thank you xo

    [Reply]

  • Matt

    Hi all,

    So great to read these stories. :-) I am very touched. The last days have been my down days again after a long up period.. :-)

    Thank you Sarah for having created this. I hope I can contribute in the near future with more writing.

    For today I am out.

    Much Love,
    Matt

    [Reply]

  • http://www.reikalein.com Christine

    Hi Sarah,

    I know this post is a bit old now, but after a week of waking up feeling fuzzy brained and tired, I felt the need to revisit all of your Hashimoto related posts.

    I have been suffering from a recurrence of the Epstein Barr virus (basically a mild version of glandular fever on a monthly basis) for the last 1.5 years. I too had to visit hundreds of doctors only to be sent packing with antibiotics or a threat to remove my tonsils. I have now found a specialist who has helped me through diet and through African herbal pills (I had to swallow a load scepticism with the first pill!). These pills are supposed to regulate my immune system. My specialist suspects I have an overactive immune system that attacks my body (isn’t that effectively an auto-immune reaction??).

    Now, my symptoms, for the most part, are getting much better. I am definitely on the road to recovery with regards to the virus. On the other hand though, I’m starting to wonder if I have an underactive thyroid aswell. I find it near impossible to lose weight although I eat very sensibly (no sugar for over two months now). I’m not so worried about the weight, I am of a normal build, but the persistent peely nail on my right thumb, but inability to feel fully rested after 8 hours of sleep, plus my brain fog and lack of energy combined with the weight thing is starting to make me wonder.

    I am debating whether to start the wild goose chase for a doctor all over again. If I do, do you have any suggestions as to what to say to them specifically? I imagine that with your past experiences you now know how to best approach doctors in order to be taken seriously.

    I am giving up gluten as of today in the meantime to see if it helps at all.

    Thank you for sharing so much about your condition on your blog. Just as you said, I feel like there is no other source of sympathy or understanding other than from people going through similar situations. I really appreciate your ability to make me feel less alone in my plight, even though you’re all the way on the other side of the world.

    [Reply]

    Irene Reply:

    I haven’t completely eliminated gluten but have drastically scaled down on it ~3 weeks ago and feel much better for it. It has reduced bloating and I feel more energetic. This was also a trial for me as I’ve read that gluten is a curse for us. In those ~3 weeks I hadn’t drank any white wine but by coincidence have been drinking a glass of dark ale occasionally because our weather in Melbourne has been unbearably hot lately. On Wednesday evening I attended a family birthday function in town and shared a bottle of white wine with my sister & friend. Guess what !! I could hardly get out of bed the next morning and my body was in agony – I needed a walking stick most of the day. It ached to sit, lay, walk, stand . . whatever. Around 5pm, I noticed the pain subsided and it was that evening that I wondered whether white wine now affects me like this. As I drank the sav blanc I thought to myself I shouldn’t be drinking this, it feels acidic. I won’t be trying that again – even to disprove it, nor will I forget that pain in a hurry. I did have a glass of dark ale with a meal out with friends yesterday late afternoon – I was OK. I wonder if others have had this experience.

    [Reply]

  • http://www.independent.co.uk/travel/hotels/travellers-guide-spa-breaks-8437684.html http://www.independent.co.uk/travel/hotels/travellers-guide-spa-breaks-8437684.html

    Thank you for the good writeup. It in fact was a amusement account it.
    Look advanced to far added agreeable from you!

    However, how can we communicate?

    [Reply]

  • Gabi

    Hi Sarah,

    Over the past 4 years I’ve really struggled with my gut and bowel issues. I’m exhausted, foggy headed and generally over it everyday, if I could stay in bed all day I would. This isn’t coming from a feeling of depression but just being generally exhausted. I can’t sleep, I feel ill after most meals, I have so little energy exercise is non-existent. But my doctors continue to tell me that I have IBS and give no treatment. I’ve been told that I have an B12 deficiency and get regular injections, but I am given no reason as to why I’m deficient. I suffered my first stomach ulcer at age 22 (now 26) and continue to get them regularly.

    I’m sick of feeling sick, i’m sick of being bloated, I’m sick of being a whinge, i’m sick of being worried about going out in case i don’t make it to the toilet in time… I want to travel next year but am in constant fear that my stomach and bowel issues will stop this, camping with the boyfriend is scary enough…

    I live in Brisbane and would love to know if there was anywhere I could go to get some answers, or just help. I’ve sat here for the last 2 hours and read and read and read. Your blog has really helped me, I need to get motivated again and start figuring out what’s going on.

    Hope to hear from you,
    Gabi
    xx

    [Reply]

  • http://www.myantiwrinklecure.com myantiwrinklecure.com

    Merely wanna input on few general things, The website layout is perfect, the subject matter is very fantastic.
    “All movements go too far.” by Bertrand Russell.

    [Reply]

  • Jenn

    Hi, I have chronic sinus issues (seems to be way worse since going to Hong Kong – had all the usual travel injections- just a coincidence or not) and Vitiligo (skin discolouraton) which started about 18 months ago, anyone else having these issue along with AI . I have had blood tests for AI diseases and all seem ok as far as I’ve been told!!!! I’m a newby to this so sorry if I sound naive!
    One of my sisters has thyroid disease.
    Thanks if anyone can give me info from their experiences.

    [Reply]

    Sari Reply:

    Sari says:
    Hi Jenn,

    Although I have an AI it’s fair to say I don’t know a lot about them. But I do know that before I was diagnosed, I knew something was very wrong. Months of negative tests had proven nothing, my bloods were negative for anything, ALL of them. Even the random non-sensical ones that my GP ran in the hope of finding somehing. Nothing. And then I couldn’t breathe one day. And there it was for the world to see on a chest X-ray.

    You might not have an AI. Maybe you do (although I hope for your sake it’s the former). If you genuinely feel as though there’s something wrong don’t let others tell you that your symptoms are nothing, or maybe you’re over thinking them and it just your body ageing. Or hayfever. This includes your GP. Treat it like a problem that needs to be managed to its solution. “So…we know these tests have shown nothing, what haven’t we looked at, what can we look at again that might have changed?” Keep a diary of your symptoms…and (this is the nurse, and the sane human that survivrd the prediagnosis “i swear to God im not crazy” in me speaking) be willing to learn how to put the diary, and your symptoms down sometimes.

    Many AIs can go into spontaneous remission. Some before diagnosis. Research suggests AIs are a lot more prolific than previously thought, but people ignore the symptoms because they are so mild and random, and eventually they go into remission having never really investigated anything. So celebrate you good days, because if this is an AI, it might go away by itself.

    To start with a get a great quality probiotic (practitioner quality, nothing from the pharmacy…try a naturopath). Take a big deep breath often, and try to stay positive. You will get an answer, or this will go away.

    x

    [Reply]

  • Sari

    Hi Jenn,

    Although I have an AI it’s fair to say I don’t know a lot about them. But I do know that before I was diagnosed, I knew something was very wrong. Months of negative tests had proven nothing, my bloods were negative for anything, ALL of them. Even the random non-sensical ones that my GP ran in the hope of finding somehing. Nothing. And then I couldn’t breathe one day. And there it was for the world to see on a chest X-ray.

    You might not have an AI. Maybe you do (although I hope for your sake it’s the former). If you genuinely feel as though there’s something wrong don’t let others tell you that your symptoms are nothing, or maybe you’re over thinking them and it just your body ageing. Or hayfever. This includes your GP. Treat it like a problem that needs to be managed to its solution. “So…we know these tests have shown nothing, what haven’t we looked at, what can we look at again that might have changed?” Keep a diary of your symptoms…and (this is the nurse, and the sane human that survivrd the prediagnosis “i swear to God im not crazy” in me speaking) be willing to learn how to put the diary, and your symptoms down sometimes.

    Many AIs can go into spontaneous remission. Some before diagnosis. Research suggests AIs are a lot more prolific than previously thought, but people ignore the symptoms because they are so mild and random, and eventually they go into remission having never really investigated anything. So celebrate you good days, because if this is an AI, it might go away by itself.

    To start with a get a great quality probiotic (practitioner quality, nothing from the pharmacy…try a naturopath). Take a big deep breath often, and try to stay positive. You will get an answer, or this will go away.

    x

    [Reply]

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  • Irena

    Hi Adele
    During the first week in March (2013) I decided to go gluten free. Everything I have read in the last ~2 years points to gluten intolerance so I decided it was worth a try. Mind you, my Endo said I could eat anything I wanted because my thyroid was ‘dead’ !! My gut feeling told me he was wrong . .. . It took ~6 weeks of going gluten free then one morning I woke up and thought . . . “where’s the pain” ??? After suffering 24/7 pain with muscle, bone, osteoarthritis (diagnosed early this year) pain I was willing to try anything. I have not felt this GOOD for a number of years. I still have stiffness from the osteo but all the other aches – which I blamed on Hashimoto – are gone. I can tell you the first 2 weeks were hard – I could have killed for a baguette ! After that it was easy. I know this may not work for everyone but for me it was a miracle and I got most of my knowledge from books and internet. My GP is great and Oroxine has certainly got my thyroid levels down to normal but all the pains associated with autoimmune were constantly there. Another thing, I had my antibodies tested last week and my levels went down from 1300 (~Sept 2012) to ~450. I asked my GP what else could I do to get these back to normal – he said, nothing, it goes along with thyroid problems. Again I thought maybe that’s not quite right. I’ve never really been a sugar addict so I knew that wasn’t a big problem for me but gluten products could have been a possibility. I tested negative for cealiac a few years ago but that doesn’t mean you may not have a gluten/wheat/etc intolerance. Each year there is more and more info on this. Todate I still have no pain. Sorry I haven’t heard of Hoffman’s Syndrome Adele but if I do I’ll certainly post it. Good luck.

    [Reply]

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  • Laura

    I have Hashimoto’s. It’s not a big deal for me and I think for most people it isn’t a big deal. I take 67 mcg levothyroxine/day and I adjust it based on my TSH. I aim to keep my TSH < 2.5 – i.e. midrange, not low-normal (I don't remember units, they are USA units) – and significantly above zero.
    I have other health problems that are a huge burden, but the hashimoto's is relatively minor. If you have trouble converting T4 to T3 you might have to take T3. T4 seems generally preferable, it's smoother since T4 is only gradually converted into T3.
    One can have HYPERthyroid phases in Hashimoto's. That causes problems, because being severely hyperthyroid is VERY unpleasant. But the hyperthyroid phases are only early in the disease.

    [Reply]

  • Amelia

    Hi all,

    I have cut out all sugar very strictly for the past 6 weeks. I am looking to see if this will affect any sort of underlying symptoms I have in regard to possible autoimmune / thyroid problems. I have a very significant family history of both hypothyroidism and various autoimmune problems, and a weird combination of symptoms (get VERY hot feet and hands some times (strange), inflammation, mood swings, fatigue, irregular periods) so I thought I would see if/how these would change with cutting out sugar. So far, my concentration is incredible and energy levels a lot better, so I am hungry (excuse the pun) for more dietary challenges!

    I believe whole-heartedly that nutrition is tied to these types of problems in very intimate ways, so I wanted to see what other dietary changes people recommend? The inflammatory nature of gluten and grains seems reason to cut that out, but I wouldn’t without some good anecdotes.. And whether people think I should pursue something more mainstream in terms of medical investigations / therapies?

    [Reply]

    Kate Reply:

    Hi Amelia. I have Hashimoto’s and maybe something else, so I went on a three week gluten elimination diet. I found out that I don’t really have a gluten intolerance, but I would suggest trying an elimination diet just to rule gluten out of the picture if you’re thinking about it. Three weeks really isn’t that long, and I think it’s well worth the knowledge.

    [Reply]

    Laura Reply:

    If you have Hashimoto’s you are more likely to have celiac disease, and there’s a blood test for that.
    A gluten elimination diet wouldn’t necessarily tell you if you have celiac disease. For one thing, if you have multiple food sensitivities, all of the foods you are sensitive to should be eliminated in the elimination diet.
    That’s because the body does something – don’t know what – to hide the symptoms of the delayed food allergies. And that something works for many different allergens. So if you are still eating some food you have an allergy to, your body is still doing its coverup, and you may not notice symptoms when you reintroduce gluten.
    And you might be getting hidden gluten.
    “Food Allergies and Food Intolerance” by Brostoff and Gamlin has elimination diets of varying strictness at the end. And a lot of good info on cross-reactions.
    I have a couple of elimination diets on my website http://camoo.freeshell.org/elimination.html of varying strictness.

    [Reply]

    Laura Reply:

    Definitely taking your symptoms to an MD would be a good idea. They can test you for Hashimoto’s, thyroid function and whatever else they think might be the problem.

    [Reply]

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  • Shari

    Hi Sarah,

    Is it sad to say that this made me cry?? This is so true everything you said. Doctors on the other hand don’t give me answers. I pay so much money to be told the same thing.

    Any reccommendations for help in WA?

    Thank you

    [Reply]

  • Lara

    Hi Sarah

    First I just wanted to say a huge THANK YOU for everything you’ve shared on your site — it has come on an extremely hard day for me and has given me a lot of hope.

    This post has absolutely just summed up the last 7 years of my life.
    I am 22 years old and I have been struggling with Hashimoto’s for the past 7 years. I can relate to so many of the things you do especially looking at the natural therapies. Last year I quit sugar, and am gluten and dairy free. Most of the time I feel like no one really understands, especially because I look ‘normal,’ I am so grateful to come across so many different stories of people going through similar things. I have recently had my life turned upside down, suffering from adrenal exhaustion on top of my AI meaning I had to quit my job in July (DRs orders). Hence I am looking for any way of improving my health. Trying to live up to the expectations of a 22 year old with the energy and hormone levels of a 90 year old is the biggest challenge I face in my life.

    I would love any recommendations within Sydney
    xx L

    [Reply]

  • Kneesa

    I understand people trying to see the positive and saying they love their thyroid or whatever AI they have. But I’m going to be honest, I don’t love mine. I have Ankylosing Spondylitis and as a result the medicines used to treat it have given me leaky gut along with 11 food allergies..I don’t love mine. I am almost 30 and living at home with my parents, Perth housing is ridiculously expensive but even so, I’ve had to take a year off work to deal with this and I am in desperate need of my own space and right when I am confident that I can get back into work and sustain my energy levels and health, I’m dealt another blow. It’s not like this is the first time either, 3 years ago I took 18 months off to do the same.
    I know I can manage my condition but that doesn’t mean that I’m able to get over the limitations it imposes. Over the past 2 years I’ve lost a lot of friendships because people just don’t understand that sometimes you can’t attend events or on a Friday night when they want to go out, you dream of getting home, making a cup of tea and watching Greys Anatomy – because you know that’ll relax you more then 4 hours standing in hi heels, drinking and counting the seconds until you can get in your car and drive home.
    I learnt a lot of the ‘slow down, smell the roses’ lessons in my teens when I couldn’t keep up with other people and what appeared to be their endless energy levels.
    I only have simple goals, well one really. To buy my own home, I don’t care if it’s small but my own little haven where I can look after myself.

    AI derails me, and I don’t want to sound bitter. Perhaps I’m going through one of “those” days that we all have. But I still can’t bring myself to say I love my AI. I love myself, absolutely. But I do not love my AI.

    P.S Thankyou for all the work you’ve done and are doing to promote awareness for AI and standing up and introducing a new way of living with sugar-free methods. It is greatly appreciated :)

    [Reply]