this is what a thyroid day looks like

Posted on October 2nd, 2012

Since I’ve been back my thyroid has been wreaking it’s annoying old havoc. While I was away it was so much calmer, perhaps one day a week of pain. For the past week, it’s been four days of pain, which is how it was before I left. I’m still trying to work out what triggers it. In the meantime, I cope, I modulate, I recalibrate and I try to see it all as a necessary gift.

Photo by Brian Oldham

I just had a bad few days of it over the weekend. So I thought I would share just how a typical thyroid day transpires for me, while it’s fresh. And how I cope with the various symptoms. Not to garner pity*, but to comfort those out there with chronic illness who grapple with the loneliness of it all. Mostly, I find, when you have chronic, unexplainable, unfixable illness, all you want is to know you’re not alone and that your symptoms are real and understandable and worthy of recognition, if only via some stranger’s blog post.

* although, if I’m honest, I’m often seeking “leeway” from the world.

But also – and I say this often – I reckon what I learn from having auto-immune disease is applicable to anyone wanting to lead a better, more well life. A life closer to the core. More real. More conscious. When you have an auto-immune disease you are that much more sensitive to the bad shit we do to ourselves and that we’re forced to put up with – the smells, the additives… the noise. We are the canaries down the mineshaft. Want to know what’s bad for you? What’s doing you damage? Ask an AI sufferer! They feel it with their every pore in real time where others often do not.

So. My Sunday.

* Wake early. 5am. Despite being unable to walk properly the night before from weariness, I have not slept. I wear earplugs and an eyemask, but my hypersensitivity on thyroid days means I wake to the slightest stimuli. The smell of the perfume of someone walking past my open window will do it. Perfume…the stuff should be banned. As a canary down the mineshaft, can I tell you, the stuff is poison.

* My feet and lips burn. They’re swollen and bloodflow is restricted. It’s inflammation and lymphatic blockage. My left
eye twitches. These are usual symptoms on thyroidy days. From my neck down, my right side plays up. From the neck up, my left side plays up.

* Realisation #1: Lack of sleep is the biggest trigger for thryoidy pain. It’s that simple. Anything less than 7.5 hours now will send things haywire. A cruel reality when thryoidy days beget insomnia.

* I feel tender and I don’t want people. Near me. In my thoughts. The hub-bub of humanity hurts. I describe thyroid days as: “Imagine your worst hangover and times it by three.” You know when the very idea of the phone ringing and having to deal with someone or some issue hurts to the core? It’s like that.

* Remedy #1: move. In the morning.  I’ve realised lying down doesn’t work, as tempting as it can be. Moving does. Walking, stretching or swimming….very slowly but for an hour at least. Enough to get the lymphs open and flowing. It truly works. Overseas, I hiked on thyroidy days, for up to four hours. The symptoms faded over the day. But I do it in the morning. By the afternoon I’m cactus.

* Realisation #2: being cold is a big trigger for thyroidy days. So is wind. It’s like it takes too much to keep warm. And to deal with the fluster of the bluster. On hot, dry, still days I feel best. Which goes back to the role of vata in all this.

* I go to power yoga …a gentle alignment class. I focus on my breath just to cope. In. Out. I can feel toxins release in and around my knees and hips. It’s not painful; it’s like a syringe of hot, acidic coffee is being injected into my joints. Oddly relieving. Better out than in.

* Remedy #2: sweat. Hot yoga or a sauna. Preferably infrared – read here for why infrared is good for auto-immune disease. Again, sweat gets lymphs moving. But heat also takes the strain off my body. It was windy on Sunday…a yoga class was the best place for me to be.

* Realisation #3: Thyroidy days get me present. By which I mean, due to the fact you can only focus on coping one second at a time, one step at a time, one conversation at a time, I get down and dirty in the moment. I abandon plans, abandon forward-thinking. I’m just coping, like walking across a desert without water. Which I’ve done before. So I know the analogy is fitting.

* I attempt one chore: I go to a mall to redeem a gift voucher. And am approached by no less than five people who read my blog and want to chat and be lovely. Four of the five recognise me from my green shorts. I’m acutely aware I look like hell. Puffy face, small eyes, swollen lips. Delicate. I put every, single, iota of energy into conversing and looking cheerful and grateful. In hindsight I’m glad I look like hell and a lesser version of the glossy me on the cover of my books and the health messages I sell. It’s good aerobics for my ego.

* I seek calories and stimulation. I make no apologies for this. On thyroid days I seek caffeine and chocolate and fat and carbs. All of it. I refuse to punish myself for this. I let it unfold until the feeling subsides and drink coffee and eat 50g of 85% dark chocolate. And nuts. Fat is good for thyroid days, stimuli not so much. But so be it. Coffee gets me through a few more hours. I’ll recalibrate this caffeine hankering another day.

* I crash. I can’t move. I can’t get up to go to the toilet. I hate and resent everything and life is ugly and noisy. I can hear the electricity meter next door ticking. In go my earplugs and on goes my eyemask and I just lie in the dark for an hour. Coping. That’s all.

* Remedy #3: a Thai massage. I’ve tried all the styles. Thai is best. It’s no-fuss and it works to trigger points. And it’s about getting the lymphs moving and the joints mobilsed. It rarely fails to work. It’s an expense I just accept now. I don’t buy nail polish or get blow-dries. I get Thai massages for $40 for 30 minutes. I get the masseurs to focus on my calves and hips.  I walk 20 minutes to the massage, up the hill, in the dark. This works, too.

* I eat vegetables with oil. Fennel, zucchini, peas and bok choi. Lots of oil. This works, too.

* I take a laxative. Yes. My thyroid renders me incredibly stuck and toxic. It’s not ideal, but the priority is to get things out. Better out than in.

* I take aspirin. Yes. It’s a Molotov cocktail of drugs going on here. But aspirin brings down inflammation and helps me sleep in one hit. I sleep. Four hours…

And so it begins again. Modulating. Slowly. One remedy at a time.

Are you coping with chronic illness? How so?

 

 

 

 

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  • http:kingvalleyfreerange.tripod.com Elizabeth

    and I thought my bad days were bad:( Things have improved since I started seeing a kinesiologist, so much so, I am training to become one myself. Good luck xx

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  • Simone

    Hi Sarah

    I am sitting here reading this and nodding and crying a little bit too! Thyroidy days just take all the energy in world to get through and people without it cannot understand. I have just got through my son’s 1st birthday party and have been shattered for 2 days since with all the symptoms above. I cope pretty much the same way you do.

    I find cupping and accupuncture are the best for me…and in my mind I dream that I one day get my own infa-red sauna in the backyard so I can just sit and sweat and heal.

    I developed my thyroid issues at 7 – by 12 I had a partial thyroid removal and it grew back, so I had a total removal at 13. Because this was BEFORE all my teen hormonal changes had happened, I never had NORMAL body functions etc. This impacted my fertility and self esteem and all the usual things. My husband and I waited nearly 7 years to adopt our little boy and now I focus on how lucky I am with that – and he brings us so much joy. But on the days I am bad, I can barely play or pick him up and that breaks my heart a little bit.

    Your story and blog are helping so many people – you are doing an amazing job!

    Simone

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    maria Reply:

    Hullo Sarah,

    This sounds like me at the moment. especially the need to “hide”. I find to tell people that I am busy. Hashimotos is horrible. I have had 4 lots of antibiotics in one month. A blocked eustachian tube that will not go away. I think this epsidode has been triggered by a stressful time bought on by the death of my Stepmother. I am usually an outgoing person so the need to hide is unusual. Hope that you improve soon. m

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    Lulu Reply:

    As someone who has suffered from hyperthyroidsm since the late 80s and had my first thyroid op 7 years ago then had to deal with thyroid cancer this year with a TT and treatment, I can tell you that it doesn’t get easier. Having to rely on a tablet each day to keep me alive and being so suppressed so my cancer cells don’t start growing again somewhere else in my body is not easy. I am high risk of recurrence so it’s regular doctors’ visits, blood tests and fiddling with meds. I ache constantly as my parathyroids were damaged in surgery so I require masses of calcium a day to function otherwise it can be life threatening. I rely on my friends at the Thyca site for support and advice as no one else can really understand what it’s like to deal with thyroid cancer. It’s not the good cancer that people think. Once you loose a vital organ that controlled your body temperature, and everything else in your body, your life becomes a nightmare. Mood swings, heat intolerance, calcium issues, going to hypo hell before RAI and then dealing with dry mouth, ect, is not easy. I recommend people check out the Thyca site and see what Thyroid cancer patients have to deal with each day.

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    Rose Reply:

    After reading all these posts I’m wondering if anyone out there is allergic to MSG and Sulphites. Since I’m watching what I eat I feel much better.

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  • Katrin Helmreich

    Sarah, I hear ya! I’ve coped with CFS and fibromyalgia for 5 years and just about 100% back to well health. Constipation: I’ve been using an enema bag I bought online overseas. I have about three coffee enemas a week – laying on my bathroom floor, ready to hop on the toilet afterwards. I know it sounds gross, but it’s the best for clearing the bowels. It’s not easy buying an enema bag in Oz, even in holistic health shops I’ve been met with looks of horror and one lady advising that they don’t sell them as they’re associated with sex toys!! God, I couldn’t think of anything less bloody sexy! Anyways, just a thought.

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    Amy E Reply:

    Any chance you could direct me to where I can buy an enema bag online too please? :)

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    Renea Reply:

    Hi

    I brought a enema bag off my naturopath years ago. You could check out the website and see if they still sell them http://vitality.com.au/store/index.php

    They are located on the Gold Coast.

    Hope you can get your hands on one.

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  • judith

    you are amazing. you feel like a big sister with your big life experiences and wisdom and continuous learning and all of it. i am deeply sorry to know you suffer and i am deeply grateful to learn of your experiences around it. quickly puts things into perspective.

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  • http://werecommend.com.au(comingsoon) caroline roessler

    HI Sarah,
    As you know I had Graves Disease for years and no amount of medication cured it. Consequently I had the radioactive iodine treatment on my thyroid late last year and for the first time in years I feel balanced and back to normal. Would this treatment work for your condition or is it something you just don’t want to do? I was very reluctant to have it done for a long time – now I just wish I’d done it sooner.
    Carolinex

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    Shanina Reply:

    Hey Caroline, so interested to hear this. I have Graves too and have had about 2 years of Graves hell, with a Dr who is just really happy that my T3, T4 levels are right thanks to medication… but I still get 2 or more crappy days a week. It’s great to hear your results with radioactive iodine. It means I haven’t reached the end of all treatments yet! Thanks!
    Shanina

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    Sarah Wilson

    Sarah WilsonSarah Wilson Reply:

    Caroline, ta for the message…Graves disease is the opposite of what I have. I had Graves in my 20s….then my thyroid conked out (went the other way). PS Keep an eye on yours..hashimotos often follows Graves.xx

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    Mia Bluegirl Reply:

    Interesingly though, I read that if you DID completely obliterate your thyroid, you would have less fluctuation and bad days. In people whose thyroid is barely functioning, the synthetic hormone supplies most of your T3 and it is the exact same dose every time. Ergo, less up & down. Whereas if your thyroid is still halway functioning and only partially supplemented by hormone replacement, you are more prone to natural fluctuations.

    That had nothing to do with anything, just hoping the random factoids amuse everyone else as much as they do me. :)

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    caroline roessler Reply:

    I believe you can’t get Hashimotos once you’ve had the iodine treatment. My levels were very low and I’ve had to go on Thyroxine (which I’ll be on for the rest of my life) to keep my level stable… but once you get the dosage right that’s it. Much easier to deal with than the neo-mercazole.

    Leigh Owen Reply:

    Thats really interesting I have had Graves for over 10 years(probably longer but Drs didnt pick it up for many years) and have been off and on neo-mercazole. I also am borderline diabetic (apparently hyperthyroidism can do this too). My symptom in the last few weeks have included burning tongue and lips (as you said) which I have never had before. I assumed this was due to diabetes but it is interesting to see you have put it down to Hashimoto’s.
    Do any of you with thyroid conditions have a really tight pulsing neck at night- this is the think that keeps me awake most. I told the endocrinologist last time but she said it was probably just neck tension but it is feels more vascular than muscular. I am going to Drs tomorrow so will see what all my levels are doing but I am glad you have alerted me to the fact that hashimotos was a possibility. I have found all through my illness that I have had to do my own research. Even now I feel ripped off because I would have definitely opted for radioactive iodine therapy if I’d have known my thyroid was going to burn out anyway ( I was concerned about Hypothyroidism)

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  • Kim

    Irritable Bowel or thats all the medico’s & natural therapists can tell me. Not as dire as an AI disease but you have listed some of the mental & physical ills I have dealt with all my adult life & have never been able to put into words. I also realise that they have a strange sense of shame attached to them for me, maybe because I feel odd & alone with it. Personal remedies & basic coping strategies that barely work but are all you have. Comforting to read somebody else’s plight. And yes when Im in a bad way I just want to be incognito & shut down. Autopilot. Thank you for sharing.

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    Sarah Reply:

    IBS is all too familiar to me. I saw so many GPs, naturopaths, gastroenterologists, etc until I found a dietitian who put me on a diet that totally changed my life. For me now, it’s a daily battle to stay well, but at least I can work and function again. IBS advice, don’t give up, get second, third, fourth opinions till you find what works for you. IBS is an umbrella term, you need to find what the real cause is. Do lots of research on food intollerance, food allergy, anxiety, etc. there are so many things it could be, but eventually you’ll find it

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    Two Modern Cavewomen Reply:

    Anxiety is usually not the cause, but you can bet your behind it makes it 10 times worse. I know, from a LOT of experience :(

    Sarah’s right, IBS is a name, not a proper diagnosis. I’m working on changing my diet now to try and find a healthy & nutritious list of food I can eat. It’s a life long quest to stay as healthy as possible. Life shouldn’t be this hard……

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    ladymayoress Reply:

    Hi, I suffered from IBS since the 80′s. Was unofficially diagnosed with celiac, then another Dr. said it was a reaction to a combination of foods (wheat and sugar /NAET testing). It would always get worse with anxiety, diet certainly has helped but one thing that has helped me the most is to get to the root of my anxiety and also suppressed anger. A lot of my physical pains were connected to anger that I had suppressed.

    Well it is a relief to see that there are all kinds of ways to help ourselves. Just my two cents :)

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  • http://goodthingblog.com amber

    What is it with AI disease and insomnia? This is the BANE of my existence. Sometimes pain keeps me awake, but most of the time, I don’t even know what keeps me from sleeping. It makes me feel miserable, because I am tired all the time.

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    Mickey Reply:

    Have you looked into serotonin deficiency? I always blamed my sleep problems on AI, and then I got a test and found my serotonin seriously lacking. Ever since I have been able to sleep well, and it has brought me incredible healing…

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    tash Reply:

    yes, i hear you. Insomnia is connected to bowel/digestion problems, because it’s your bowel where you absorb all those nutrients that are key for mood and sleep, like magnesium and tryptophan.

    I learnt this the hard way after becoming all too familiar with the look of my ceiling at 3am over many years, given my 20 years of IBS.

    I now find the IBS diet (low fructans low fructose) and supplementing with Magnesium, Selenium, Tryptophan and occasionally Melatonin have helped enormously. And i LOVE the French Verveine tea (lemon verbena in Australia). So calming – and calms the stomach down too. Be careful with melatonin, as it’s a hormone, though.

    Good luck!

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  • Mia Bluegirl

    Yeah, you’re not alone.

    I had one of those days yesterday. Didn’t sleep well, so went for a walk to loosen everything up. I also find caffeine in the morning helps even though its usually a no no, as does lying in a dark room with mindless tv on that requires no concentration.

    It was something like 34 degrees in Perth yesterday and I spent most of the day wrapped in blankets.

    Acupuncture helps, I’ve found eastern style is best for hormones but western physio-style is best for carpal tunnel. It’s instant relief! Oh, and meat and fat are the best. Something about the iron and minerals I think.

    You do what you need to. And then make the most of the good days.

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  • http://Www.theprimalist.com The Primalist

    Hi Sarah, sorry to hear you are suffering like this. I know that you eat a paleo-ish diet, like me. I’m currently doing a strict 30 day elimination diet, and it got me thinking.. Have you tried a strict autoimmune protocol version of the paleo diet? I’ve heard of a lot of people with various autoimmune problems that had great results. Just a thought… Hope you feel better soon!

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    Mickey Reply:

    I do the AI protocol as well! I started a blog about it last month, since the Internet is seriously lacking in information. How are you doing on it?

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    The Primalist Reply:

    Well I generally just eat paleo/primal.. but right now I’m doing a 30 day elimination diet, which is pretty much AI protocol.. it’s going great.. I feel very well-nourished.. you’re right – I wish there was more info about it online.. but it seems like blogs are popping up all the time..

    [Reply]

    Sarah Wilson

    Sarah WilsonSarah Wilson Reply:

    Have you guys got info on the protocol? Mickey, can you post a link?

    Leonie Reply:

    I read this and cried … This is me, and what a relief to know I am not alone. I have been sticking to a paleo ai diet as well (graves & coeliacs) . Has made such a huge difference for me . Best book is PRactical Paleo.

    Mickey Reply:

    I blog about it on autoimmunepaleo.wordpress.com. The Paleo Mom is also a great resource – she has been at it longer than anyon I have come across.

    Mickey

    The Primalist Reply:

    Hi Sarah,

    Here’s a good resource for the autoimmune protocol: http://www.nutrisclerosis.com/Blogs/EntryId/48/What-is-the-autoimmune-protocol-of-paleo.aspx

    Also, Terry Wahl’s TED talk is pretty amazing: http://www.youtube.com/watch?v=KLjgBLwH3Wc

    Cheers.

    aussiebeachgirl Reply:

    Hi Mickey. What’s the name (or link) of your blog? Cheers, H :)

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  • Heather V

    Oh, Sarah, honey. Thank you for sharing.

    I’m currently experiencing adhesive capsulitis (aka frozen shoulder). It is not fun; I hope you never experience it. I have hypothyroidism, obviously nothing like what you suffer and have battled (and beat down) colitis and gastritis in the last few years. Cleaning up my diet, massage, and occasional acupuncture have been lifesavers for me.

    Right now one of my best resources is a Facebook group called Frozen Shoulder Friends. If any of your readers are suffering from this strange malady, I encourage them to join the group. It helps so much to be able to vent, share information, exchange encouraging words, and find a way to laugh through the pain.

    I hope your thyroid days are few and far between.

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  • Alison Macintyre

    Sarah, ever since I have found your blog I have felt such a selfish relief that someone can describe the weird and unfair symptoms that are apparently due to Hashimoto’s and celiac. I have also recommended your blog to others who are newly diagnosed. I’m sorry you are having one of those thyroidy-times and send you some Queensland sunshine to warm your lymphatic system. Thank you for writing honestly and frequently about your experiences, your discoveries, and your ideas.

    xx Alison

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  • http://southcoastlife.wordpress.com Rachel

    Hi Sarah, have you tried Kinesiology for AI?

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  • Bridget

    You poor thing! How totally hideous. Good health is such a blessing.

    [Reply]

  • Carrie

    Hi Sarah,

    Thanks so much for sharing all that you do: the good AND the bad. You’re right in thinking that it makes others out there feel less alone. I’m relatively new to Hashimoto’s (diagnosed a year ago) and am still confounded by how up and down it makes me, how it controls my life (thyroxine does a lot, but not really enough..). I thought menstrual cycles were bad enough before!

    I too am a very light sleeper and suffer the same fight for elusive sleep when having ‘thyroidy days’. And less than 7 hours’ sleep and I’m cactus! Thanks for the tips. I use many of the same coping mechanisms as you do currently but might try the Thai massage if I can find a good one around Melbourne that doesn’t cost the earth. Have you tried lymphatic drainage?

    Hope you and your green shorts are back in fine fighting forms sooner rather than later!

    Carrie x

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  • http://www.twomoderncavewomen.com.au Two Modern Cavewomen

    Ah, a fellow canary who hates perfume. We should start a club. Sharing is a good thing> Being sick can be a very isolating experience. I go up and down like a yo-yo, CFS / MCS sufferer for too many years to count now (since 1994).

    I could write a book about how I cope, but we’ve decided on a website instead (with a fellow CFS sufferer), but for me, I find stress is a big trigger, and since I don’t trust my body to do what I need it to do, being out alone doing the most simple task can be stressful.

    I won’t rabbit on, just thanks for sharing and you’re not alone either.
    ~ Cavewoman Jo

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  • Margaret

    Thank you so much for this post Sarah. I have a different autoimmune disease and I can relate to 90% of what you wrote. I had a really crappy day for most of Monday.
    My crappy days are getting fewer and far between and aren’t lasting as long though, so that’s good.

    Yep, aspirin definitely helps me sleep but I rarely take it because it increases intestinal permeability. On crappy days I take a large dose of vitamin C, spread throughout the day. I’ve been taking the herb Cat’s Claw recently and feel a lot better on it – it’s a very powerful anti-inflammatory.

    I get strong cravings for sugar and fat on crappy days, but instead of eating sugar I either go and sit in the sun with a cup of tea or I go to bed for a nap. That always makes me feel much better. I also find that drinking green tea throughout the day usually helps enormously with all those autoimmune symptoms.

    Thank you again for this post and for your wonderful blog Sarah. I can’t wait to meet you in Sydney on 24th Nov.
    Thank you for being so kind and generous and sharing what works for you.
    Before I go; some of your symptoms could indicate magnesium deficiency. I’ve been taking good quality magnesium forever but recently have been using an American brand of topical magnesium lotion – it has helped me enormously. Because I’m a coeliac, my ability to absorb nutrients isn’t fantastic – so I decided to bypass my gut and it worked!

    I hope you have a wonderful day today.
    Margaret
    xxxxxxxxxxxxxxx

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    Mia Bluegirl Reply:

    Magnesium supplements made a huge difference to me too! SO much less achey and sore since I started, and it helps my stomach too. I’ve never heard about the topical version, though – could you post some info, pretty please?

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    Margaret Reply:

    Hi Mia, this is the brand I use: http://www.ancient-minerals.com/
    I’ve only used the lotion and I’m very happy with it.
    Best wishes for your good health.
    Margaret

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    Two Modern Cavewomen Reply:

    I’ve been toying with the idea of stocking this at http://www.shopnaturally.com.au, do you use the spray, the gel or the cream? Do you get the tingly sensation when you put it on?

    Magnesium can really upset the digestive system and is best taken with food, in a powder form if you can get one, or the topical stuff or soaking in epsom salts. Would love to know how you use it / find it.

    Ariane Reply:

    Wow, thanks for posting that! I’ve been trying to take supplements of magnesium as well – just ordered by the Integrative Medicine guy I’m seeing, but it’s giving me major stomach cramps and I’ve had to stop. Maybe if the smaller dose is still too much this could be an option!

    Two Modern Cavewomen Reply:

    Ariane, if your magnesium is a powder, start off with really small doses and take it with food. Quite literally, one mouthful of food, a very small sip of magnesium, after a couple more mouthfuls of food, take another small sip. Build it up really slowly. I’ve been there, and trust me, it’s awful, but with food, your body will slowly get used to it.

    In the interim, try one of the topical applications. Hopefully you can find one in your country. There’s a couple of different ones available in Australia.

    Tracey Reply:

    I have been suffering with an undiagnosed AI for over 2yrs now, main problem was severe leg pain, could not walk anymore which led to weight gain. 2 months ago I was 1 day away from being placed on Chemo for this undiagnosed condition as it reduces inflammation, i hit my lowest point, i could not stop crying for no reason, felt like the end of the world, was grumpy all the time, didnt want people to be near me, could not tolerate noise, was cold, achy, foggy head, the list goes on. I by chance was told to see a Remedial Massage guy, I was at the point of trying anything although as my problem was internal i didnt have much hope of him helping me. He is also a nutritionist with many yrs of experience. He told me straight away I had to much calcium in my body causing inflammation and calcium was no good for us, i have since ceased calcium intake. He told me I had hypothyroidism which never showed in blood tests but I had all the symptoms he put me on iodine and ive been jumping out of my skin, he also gave me ANCIENT MINERALS MAGNESIUM OIL, this is the best thing ever, i rub it into my body as many times as a day as i like, when my legs feel tired and achy within minutes they are good as gold…i also drink it with carb soda…i dont know where this stuff has been all my life but this guy told me Magnesium used to be in the soil and we would get this nutrient via fruit and veg however this is no longer the case, therefore we have increased AI conditions, breast cancer and ADHD/Autism due to lack of Magnesium, the tablets are not good as you simple flush them down the toilet, this gets into the skin….I went from not being able to walk to walking freely and pain free within a week, i cannot thank this man enough, he is my miracle and i have given all Dr’s away, i urge you to Youtube this and research it and try it….

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    aussiebeachgirl Reply:

    Hi Margaret. Can you explain a little more about Cat’s Claw and where you get it from? I have developed chronic joint pains through my fingers, wrists, elbows, shoulders, legs and hips, and am finding it jolly hard to lift things up, or to get out of bed! Thanks heaps. H

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  • Shanina

    THANK YOU THANK YOU THANK YOU! Not just Sarah, but everyone else who’s joined the conversation.
    I’ve been frustrated as hell lately with this battle with Graves, the increasing number of crappy days despite medication, diet, supplements, yoga, stillness, epsom salt baths… and then the challenge of explaining what it’s like to friends and family. I needed to hear this.
    My thyroidy days are much like Sarah’s, even the “above the neck/below the neck” pain… which is totally weird! But I get the added thrill of tachycardia. And then I can sleep. And sleep and sleep. I need between 9 and 11 hours a night, or a sneaky nap through the day to make up the numbers.
    Last week I tried icepacks and a cold bath in place of the normal heat I crave (a stab-in-the-dark based on what the footballers do to recover). Surprisingly it seemed to help! I’ll try it again next time.
    So thanks everyone for sharing your stories!
    x

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  • Julie

    I am a reader that suffers the same disease. I am finally after 7 years seeing progress with daily green juice (kale, cute, huge knob of anti inflammatory ginger, lemon, 1 carrot or 1/2 an apple, celery) and a daily dose of Spirulina Pacifica tablets. I highly recommend looking into the algae world, it’s an incredible nutrition source. Haven’t tried Maca Root yet, but I’ve read this is also very healing for thyroid conditions.

    Thank you for sharing your search for healing. I am following along and finding inspiration right along with you. Cheers! xx

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  • Steph

    Sarah, Your symptoms sound absolutely awful. I am sorry that you are suffering so. I have chronic vestibular migraine, which is about all I can get out of the medical profession as a diagnosis, which means that I am dizzy all of the time, every day. I don’t want to take the prescribed medication because of the scary side effects, so when it gets bad I just take it easy. My situation isn’t as bad as yours, and I have to say that dealing with this has given me the gift of being much more present in my life. Although I’d love to get rid of this, I feel more grateful for what I *can* do than I ever have before. Feel better.

    [Reply]

    Elle G Reply:

    Steph, your symptoms also sound absolutely dreadful as well. I suffered from vertigo for about 20 years. Diagnosed as a migraine, I had a few other types of migraine as well. If life was stressful I could only sleep in bed for a few hours, as the vertigo would wake me up. Would spend the rest of the night sitting up in a chair – last 12 months before treatment that worked was every night.

    I tried everything, to improve my life. I went on a trial drug (flunarazine)for 18 months and obtained relief. I feel very blessed that this worked for me. Thought this might be of interest to you.

    Sarah, my children are the ‘canaries’ as well. Thank you for sharing your day, you are very brave and strong to continue living life to the fullest.

    [Reply]

    Steph Reply:

    Thanks for the suggestion, Elle. I will ask my neurologist about this.
    Take care!

    [Reply]

  • Alicia

    Thank you so much for writing this. I read it in fits of tears (no crying as my 2yr old was close by), as you said its nice not to feel alone when you are going through so much pain.
    I have Rheumatoid Arthritis and the past 4 days have been agony just to stand, change my 2 boys nappies and get on with the day.
    I hope you are feeling relief today.

    [Reply]

  • Patricia

    I do wonder what that long long-haul flight does to those who have any medical condition which is fragile and sensitive. Long hours with immune systems dealing with all sorts of bugs and germs, body clock gone haywire, which to the sensitive system would cause enormous stress.

    [Reply]

  • Vera

    Hi Sarah i dont have AID but feel so much better when I am in Europe too. I figured that it was because my roots originate there and that my body’s makeup is designed for that area. Australia is foreign to it hence all my health problems. A couple of generations isnt enough to adapt. Not sure if this applies to you but I’m just putting it out there.

    [Reply]

  • http://Autoimmunepaleo.wordpress.com Mickey

    Wow Sarah. So much of this resonated with me. Like the canary in the coal mine bit – I use that phrasing often when talking with friends who don’t understand.

    I completely agree that moving is the best thing for us when we feel like crap. I will be dizzy in bed, and after a little yoga or a walk in the fresh air feel worlds different.

    The best thing I have found for when I have hashis flares is to work on my diet. I follow paleo, but lately when I am having a rough patch I revert back to autoimmune paleo (no eggs, nuts, seeds, nightshades). It is really restrictive but helps me a ton. There aren’t many websites out there with recipes, so I started my own.

    Good luck on your journey, and thanks for being so candid about your struggles with the disease. :)

    Mickey

    [Reply]

  • Rachel

    I’m a 26 year old that has been living with Thyroid issues since i was about 20. My Hypothyroid symptoms flared up about 12 months ago and despite being medicated and my levels falling within the ‘normal’ range, my symptoms weren’t shifting.
    My sister gave my a book about thyroid issues a few months ago and a few chapters focused on the link between the thyroid symptoms and adrenal fatigue. I had a chat to my naturopath and she agreed that most of my symptoms were adrenal relaed. After a few months of being treated for adrenal fatigue (my treatments are constantly being tweaked for my personal needs) i’m feeling 100 times better. I still have a long way to go but it’s definitely worth looking into if you’re in a similar situation.
    Rachel :)

    [Reply]

  • http://svasti.wordpress.com Svasti

    Recently I went away on a solo writing and yoga retreat, and like Sarah, I came back to “normal life” only to get sick very quickly. Seems to me this is in part due to the environment we live in – the things we call “normal” that are actually hyper-arousing and over-stimulating. It’s too much for us AI types!

    I can relate to so much of what Sarah wrote of her symptoms here. I don’t suffer quite as badly in some ways, but definitely when it comes to noise and smells (gah, perfume!). I know I’m a bit on the edge right now on account of the early morning wake ups when I REALLY need that extra hour of sleep! And yes – mornings are the only time I can wash the dishes, or do anything that requires a bit of physical exertion.

    Personally, I’ve had excellent results with combining my naturopath treatments (diet/natural supplements), with kinesiology. In fact, one of the kinesiologists I’ve worked with just wrote an awesome post on adrenal exhaustion (one of the pre-cursors to autoimmune conditions!): How to stop Adrenal Fatigue

    Kerry sent me to another kinesiologist in Melbourne who has Hashimoto’s herself: Amanda Adey. I credit both these ladies with resolving a lot of the “stuff” that caused my AI condition to arise in the first place. In fact, I love kinesiology so much that next year I plan to commence studies to become a kinesiologist myself.

    Of course, that’s not all I do. I’m a yoga teacher, so yoga practice (including meditation) is integral to my well-being. If I don’t move my body, life isn’t much fun. Curiously, teaching yoga (i.e. doing things for others) has a positive effect on how I feel, too. I also use acupuncture. And just… getting enough sleep. Not over-doing things. That is ridiculously important. I rely on coffee a little bit, too.

    Unlike Sarah, I actually don’t prescribe hot/power yoga for AI types. I haven’t tried infrared saunas, but I can see the benefits of them. However, personally I think restorative or slow yoga is better for people with frazzled nervous and adrenal systems. We’re already hyped up enough – go slow, do less. Work the spine properly and build core strength (which is also good for our digestive system!).

    Slow yoga: this is what I’ve started calling the type of yoga I teach. It fits. You still get the benefits of yoga practice (strength, stability, openness in the body, calm mind) without having to feel like you’re killing yourself!

    Hugs to you Sarah, on your bad thyroidy days. Normal AI days aren’t a picnic but bad ones are unbelievably cruel. xx

    [Reply]

    Kerry Belviso Reply:

    Thanks for sharing my post Svasti. I read Sarah’s blog in my rss but stopped by just now to find out why I had so many hits from here!

    Loved this insightful post Sarah and looking forward to seeing you at Problogger this weekend! x

    [Reply]

  • C

    Hi Sarah,
    Thank you for this wonderful, brave post, without glossing over the messy, gritty reality.
    What helps on a bad day: moving (swimming, yoga, gentle jogging), being outside, calling my friends and family, spending time with children, swimming in the ocean, cooking dinner for a friend or my housemates. Connecting, even when I just want to doona dive and block out the world.
    And knowing what triggers a ‘crash’: doing too many things at once, busying myself to the point of exhaustion, placing unrealistic expectations on myself and not being present for days on end. Good strategies are: removing just one or two things from my overcrowded diary, meditation, yoga and swimming.

    [Reply]

  • http://westendgirl.ca Ariane

    So much empathy for you – I still don’t have a conclusive answer to whether it’s my thyroid causing me problems, or if it’s a result of other problems, or just that I have every chronic condition under the stars (IBS, Fibromyalgia, CFS, food allergies, etc. etc.) I’ve started working with an Integrative Medicine practitioner to give yet another attempt at sorting things out…

    I have so many of the same symptoms as you – the constipation, the easy overstimulation, soreness all over especially my hips (and my ribs/shoulders), and on and on… I have to say how much I appreciate your sharing this with us all. You seem so “together” and ambitious and world travelleresque, and it’s really easy to put someone like that on a pedestal and think “but she’s special, I could never do all those things…” So to hear you still have these bad days like the rest of us, is in an odd way inspiring.

    I really like how you put that too – seeking “leeway” from the world… I wish the world had more of that. I quit my job in the early summer, and have been trying to make my way into a different kind of more sustainable lifestyle so I’m not constantly exhausting myself. It’s tricky!

    If you see this – I’m working on my first zine (self-published little magazine/journal thing) and it’s about living with chronic illness. I’d love to send you a copy when it’s printed – is the address on the FAQ page fine for that? I want to share it with lots of people who deal with these kinds of things.

    Much love to all of you coping with feeling cruddy. <3

    [Reply]

  • http://svasti.wordpress.com Svasti

    Recently I went away on a solo writing and yoga retreat, and like Sarah, I came back to “normal life” only to get sick very quickly. Seems to me this is in part due to the environment we live in – the things we call “normal” that are actually hyper-arousing and over-stimulating. It’s too much for us AI types!

    I can relate to so much of what Sarah wrote of her symptoms here. I don’t suffer quite as badly in some ways, but definitely when it comes to noise and smells (gah, perfume!). I know I’m a bit on the edge right now on account of the early morning wake ups when I REALLY need that extra hour of sleep! And yes – mornings are the only time I can wash the dishes, or do anything that requires a bit of physical exertion.

    Personally, I’ve had excellent results with combining my naturopath treatments (diet/natural supplements), with kinesiology.

    My first kinesiologist sent me to another who has Hashimoto’s herself. I credit both these ladies with resolving a lot of the “stuff” that caused my AI condition to arise in the first place. In fact, I love kinesiology so much that next year I plan to commence studies to become a kinesiologist myself.

    Of course, that’s not all I do. I’m a yoga teacher, so yoga practice (including meditation) is integral to my well-being. If I don’t move my body, life isn’t much fun. Curiously, teaching yoga (i.e. doing things for others) has a positive effect on how I feel, too. I also use acupuncture. And just… getting enough sleep. Not over-doing things. That is ridiculously important. I rely on coffee a little bit, too.

    Unlike Sarah, I actually don’t prescribe hot/power yoga for AI types. I haven’t tried infrared saunas, but I can see the benefits of them. However, personally I think restorative or slow yoga is better for people with frazzled nervous and adrenal systems. We’re already hyped up enough – go slow, do less. Work the spine properly and build core strength (which is also good for our digestive system!).

    Slow yoga: this is what I’ve started calling the type of yoga I teach. It fits. You still get the benefits of yoga practice (strength, stability, openness in the body, calm mind) without having to feel like you’re killing yourself!

    Hugs to you Sarah, on your bad thyroidy days. Normal AI days aren’t a picnic but bad ones are unbelievably cruel. xx

    [Reply]

    Ariane Reply:

    I hope this “slow yoga” catches on… I can never find slow enough classes for me, so I tend to just do it at home!

    [Reply]

    Sarah Wilson

    Sarah WilsonSarah Wilson Reply:

    Yin yoga…it’s great. just did a class this morning and it’s healed things nicely.

    [Reply]

    Ariane Reply:

    Isn’t yin yoga pretty energetic/active? I have to be really careful not to over-exert myself or it really makes things doubly bad. Which reminds me, I find it totally amazing how much hiking you’re able to do – I get so bloody exhausted!

    Svasti Reply:

    Yin isn’t energetic, or, it’s not meant to be. If you can’t find enough slow classes then I recommend just doing “beginners” classes. You don’t have to be busting out advanced moves – just practice simple yoga with awareness, calmness and a sense of enjoyment.

    There are more of us slow yoga teachers around all the time.

    Also, I’ve just been clued in to Carl Honore’s book “In Praise of Slow” and bought it on Book Depository. Yay for all things slow!

    [Reply]

    Ariane Reply:

    Oh neat, I shall look that book up!

    I have taken a ton of beginners classes over the years, but as my body’s slowed down it’s become harder to find easy enough ones. Even the beginner Hatha classes can be ridiculous here. Vancouver (Canada) where I live is a real “yoga city” where at half the studios in the city attending the classes is like entering in some kind of contest! Fashion and athletics, like you’re on show somehow!

    I really don’t mind doing the yoga at home, but sometimes it’s nice to get to a class to learn some new approaches, or just enjoy the aspect of community there.

  • gabby

    I highly recommend that anyone diagnosed with IBS makes sure they are tested for a parasite, especially if you have traveled outside Australia. I have read anecdotes of people being misdiagnosed with Crohns or being Celiac when they have actually had a parasite in their body for years that has gone undiagnosed.

    [Reply]

    Karen Reply:

    I agree Gabby. I contracted giardia and amoebic dystentry after a stint in Eygpt some years ago. I’ve had all sorts of lingering digestive issues despite conventional treatment. I’m currently experimenting with a Terminator Zapper, a small device worn against the skin which reportedly kills parasites by ionizing body fluids. A week in and I have seen some improvements. Tinderbox healthy bowels herbal tea is also my friend!

    Love and blessings to you all on your healing journeys xx

    [Reply]

  • Helen

    Um I wonder if you lived a little high on adrenaline during your holiday and now you’ve stressed your thyroid out again.

    Also why so good when you were away? do you think your body might just be saying it doesn’t want to continue to live the way you do. Even though you are very successful at what you do for a living maybe at a deeper level it’s not really resonating with you (and you know it?). Just an idea.

    [Reply]

    Patricia Reply:

    I am in agreeance with you Helen!!

    [Reply]

  • Kath

    I think it is too much of a coincidence that I am reading this blog that is accurately describing my symptoms on why I am lo sick to go to work today.
    I quit sugar in February and following a clean diet since the, have lost 30 kilos and feel the bet I ever have.
    I have an under time thyroid and had the majority of my hydroids removed many years ago, I take thyroxine every day,
    Since Friday , I have been feeling what I call flat, no energy, very tired, very cold, dull head, aches and pains, is like the flu but you know it isn’t.
    Feel let down by my body as I thought i had this thing beat.
    Am so busy at work that I can’t just lying around, by I have no energy to even have a shower.
    I wish I knew what the trigger was, I am wondering if it is environmental, I am often bad at his time of the year. I wonder if pollens or the like cold be a culprit.
    Would explain why you were better overseas.
    If anyone has a magic cure please let me know, I couldn’t walk or swim like you said you try to do Sarah, I don’t have the energy.

    [Reply]

    Kath Reply:

    Just saw my typos, please ignore, obviously not at my best and iPad corrects for me

    [Reply]

    nadineb Reply:

    Kath, I’ve got AI and find I feel like this in winter when my Vitamin D levels drop, and I often have a flare up over the colder months. I now take a massive daily supplement year round (though reduced during summer), and find it helps enormously with my energy levels. Could be your D levels have dropped over winter, and now you’re suffering?
    Could be worth a blood test?
    Hope you feel better soon.

    [Reply]

    nadineb Reply:

    oops, meant to type RA, as in Rheumatoid Arthritis…

  • Michelle

    Thank you for sharing Sarah. I does help to know I am not alone. After 2 years of teetering on the edge of hashimotos and doing all I could to nurture myself I have just been diagnosed with another AI, pernicious anemia. Whilst this explains many of the symptoms I’ve experienced for years it doesn’t make it any easier. People just assume that I can have a B12 shot and everything is fine but it’s so not. This week I have taken a weeks leave from work just to spend a few days being kind to me. So far I’ve slept, eaten taken a restorative yoga class and had a massage and reflexology. It’s only a few days but I’m just taking it moment by moment. I hope you feel better soon. Your words and pictures really help me to feel less isolated and I appreciate it so much.

    [Reply]

  • michael

    The vibrational aspect of humming and singing can be wonderful diagnostic tools .. x

    [Reply]

    Svasti Reply:

    Yes! I LOVE chanting – kirtan – brings so much joy to the heart, which is very healing. :)

    [Reply]

  • Samantha G

    I had thyroid issues for years, which thankfully after removing it and balancing between two doses of thyroxine according to my energy levels has evened out.

    But I also have a rare genetic disease that is just as crippling as Hashimotos/cancer was(Ehler Danlos Syndrome), which also cycles through good days and bad, and can be managed somewhat through avoiding triggers and optimizing nutrition.

    I am currently on a strict Paleo diet for 8 weeks, as Paleo is the best approach for my body and my symptoms. I am also slowly working back towards doing strength training to repair the damage EDS has done. But on my bad days, I simply make myself a cup of tea (chamomile, nettle, green, you name it), grab something high in salt to eat, and go back to bed. Those days I simply read my lectures for uni online and try to start assignments early. And by doing that, I am managing to get high marks, whereas last semester I used to push to go to lectures and got average marks.

    [Reply]

  • http://louiseandrolia.com Loulou

    Hi Sarah!

    This post is so amazing and as you said when you feel awful it makes such a difference to just know that other people get you. In the height of my Fibromyalgia I used to spend quite a lot of time on message boards, I wish there had been blogging at that time!
    I especially empathise with the heightened senses, I always tell people that at it’s worst you can hear the insides of your body, I used to be kept awake by my heartbeat which reads sounds so romantic but er isn’t!

    One question, I have probably missed somewhere, but do you take Thyroxine for your Hashimotos or do you look after yourself entirelly naturally?

    Love to you and to everyone posting here, what an interesting bunch of people xo

    [Reply]

  • https://www.facebook.com/ourepicride Kaitlyn

    Ahhh Sarah you are amazing, this sums it up!

    I always find it SO hard to put my feelings into words when people ask me what its like with fibromyalgia..thanks for validating it for me!

    [Reply]

  • Yana

    Change of season. Actually any change – any my thyroid feels it big time! Thank you for sharing

    [Reply]

  • Meg

    Thanks for your honesty sarah

    [Reply]

  • Amanda

    Hi Sarah,
    Thanks for your honesty & frankness.

    I’m at the crossroads where my t4 came back positive (not sure if that’s the term?) for a future problem, I’m halfway through my first pregnancy & my thyroid levels are not quite where they should be but apparently aren’t quite low enough to medicate.

    Due to huge bouts of sickness, conjunctivitis, sinusitis etc my dr said it couldn’t hurt to take 25mg of thyroxine daily, but I found myself having bouts of anxiety & ended up seeing a different dr for bowel issues & was told that it wasn’t necessary and to stop taking it if I wished… So I have.

    I know obvious a drs opinions best but having two differing opinions just wondered if you (obviously being very knowledgable & well-read on the subject) had any opinions on the matter?

    Any suggestions would be appreciated.

    Thanks Amanda,

    P.S would of tried to contact you privately but couldn’t find a “contact me” section on your site.

    Xx

    [Reply]

  • http://Holistichealingandcfs.wordpress.com Amy

    I am with you Sarah! I need to make sure I get 8 to 12 hours in bed per night, eating a clean primal diet, daily meditation and yoga nidra, lots of time to myself, especially on the ultra extreme days I cannot handle being around people, noises, smells my head feels it will explode. Constant monitoring, pacing, supplementation, positivity, chemical free environment, breathing, fresh air, sunshine, light movement etc. I too integrate Ayurvedic principles, on particularly bad days I will mainly have broths, soup, puréed foods, keep warm, always scrape my tongue and do enemas when needed. I could go on! I always feel better on warm, still days too. How interesting. Ah the canaries! I would be surprised if long distance plane travel didn’t effect you, in terms of cfs it’s a huge trigger for crashes.

    [Reply]

  • Anna

    Thanks for sharing this, Sarah. It is actually very thoughtful and generous of you to share this sort of information. I don’t have an autoimmune disease but, like other people who have posted here, have been battling ‘IBS” for the past 2 yrs and an awful bout of Glandular fever in the last few months. You are right – it sometimes just helps to know there are lots of other people out there trying to live a normal life and manage chronic illness. I Have seen countless GPs, dieticians, Acupuncturists, 2 Gastroenterologists etc and undergone countless tests and procedures with no explanation or answer for my IBS. One of the worst things about chronic illness has been the impact it has had on my ability to work. I would just love to be well enough to work full time again without having the constant anxiety about not being able to manage my symptoms. I can’t believe how much I took the ability to work for granted before being unwell! I have had to take so much time off.

    After 2 long years I am seeing another dietician who specialises in gut issues. She has me on a low FODMAP diet and I am doing some very expensive breath tests to see if I’m poorly absorbing specific sugars…I live in hope that i can at least manage this thing!

    Keep telling your story and stay strong!

    [Reply]

  • Suzie

    Hi Sarah, I too suffer multiple auto immune issues. For 25 years I have AI Graves now Hashis, Vitiligo and last week just diagnosed Coeliac. For about 4 years i suffered unexplained pain after full xrays, scans no findings. My vitamin d was always low and dropped into the 20s so last year I found a new chemist and they recommend vit d drops. No joke 4 days later I was almost pain free. I have now been pain free for 12 months now and I really believe it was due to the low vit d. Thanks for sharing your story:) It helps to know we are not alone.

    [Reply]

    sita Reply:

    Hi Suzie, could you tell me more about the vitamin d drops? Mine is also very low and I struggle to boost it using regular supplements. I’d be really interested to try a different application. Thank you.

    [Reply]

    Suzie Reply:

    Hi Sita, My doctor put me on them they are practitioner supply (dr,chiro,physio) only and my doctors surgery has them in stock. Bioceuticals d3 forte 1000iu. My regular dose is 2 drops a day now at first I loaded with 5 drops a day and as I said 4 days later shoulder and back pain amost gone. Vitamin d is my miracle. I do have a break from time to time as the liver stores vit d. First sign of any pain I start taking them again. I know everyone is different but worth a try if you can get some pain relief. :)

    [Reply]

    Ariane Reply:

    I also had a really drastic like almost 100% reduction in these sudden wrist and ankle pain days I’d wake up with when I started on Vit D (2000UI/day) and a little bit of Calcium supplement. I was skeptical but my dietician convinced me to try, and I’m so glad I listened! I still get other joint and muscle pain but it’s not as severe or sudden.

    [Reply]

    nadineb Reply:

    totally agree – I’ve had amazing results with my arthritis from taking Vit D, and eliminating gluten…
    I started with a really high dose too, about 8000IU/day, now about 4-5000 over winter months, and less in summer. It makes a massive difference to my energy levels, muscular pain – everything!
    I can tell when my levels have dropped because I start getting all kinds of dermatitis…

    [Reply]

  • http://pensare.tumblr.com Christine

    I love this post. To me it really normalises the whole super healthy thing and makes me feel so much better for those days where I’m migrained up and rely on caffeine and nurofen to vasoconstrict.

    thank you Sarah :)

    [Reply]

  • http://www.bohemianhome.com.au Emma

    Hi Sarah,
    I am going through the discovery stage at the moment after eliminating all sugar, gluten etc…and I too am learning to read the signs of when my body is flaring up. I only hope I can get to the stage where I can see the recurring symptoms.

    I do have a question…do you take medication for your AI? I currently take Oroxine (I have hypothyroidism and am gluten intolerant)..I was hoping at some stage through chaning my diet diet..I can stop taking it…any comment or can you steer me to someone who can help me? My GP is useless….

    ps luuuurve reading your blog. You rock.

    [Reply]

  • Kerrie

    You’re so right Sarah, just knowing that I’m not alone and that my “symptoms are real and worthy of recognition” is a huge help in dealing with my AI.

    I feel like I spend so much time trying to explain and ‘justify’ my symptoms to my family, but that they never really get it… so when I read your words that reflect exactly how I feel it really means so much. Thanks! :)

    Like you, I also struggle with dealing with people on my bad days, and want nothing more than to sit in a quiet room hidden away from the world… it can be pretty difficult to get quiet time though in a family with two teenagers and a three year old!

    I tend to leave exercise for my good days, but will try your suggestion of gentle exercise to help with the bad days too.

    [Reply]

  • cathy

    Most blogs bore the crap out of me. This one didn’t Thanks for sharing such a personal experience Sarah. I’m on day 9 with CF and fibromyalgia relapse (post Ross River, diagnosed two years ago). Yes, it’s a bitch. And yes, i ate chocolate, drank too much coffee etc but, unlike you, beat myself up. And yes, Thai massage is the only thing that seems to loosen the vice around my head. And salt water gets me back up the sand dunes with a hint of a smile. And i fake it ’til i make it. But the thing that does it for me above all else (actually, besides weekly acupuncture) is to tell myself that this is temporary. I’ve worked long and hard the past two years to rid myself of the fear that’s previously gripped me with every relapse. I still enjoy a good cry by day three, but no longer fall into the proverbial pit of despair, thinking this is “as good as it gets”. I don’t make plans to see friends, don’t buy tickets to great gigs, don’t put myself under any pressure whatsoever to have to be in good form. I can work from home in bed and no-one will know the difference. For the first time in my life, i’m truly living in the moment (often minute to minute) and savouring those moments of pain-free bliss. What a ride. Thanks again and I wish you a speedy recalibration xx

    [Reply]

    Two Modern Cavewomen Reply:

    Nicely said Cathy. I agree too, most blogs are dull, Sarah is wise and very giving. I have CFS too, both of us do. I just finished writing a blog post of my own about ups and downs and doing the wrong thing and paying for it.

    I find now that as my health’s improving, when I have relapses (which I’m just climbing out of now), I get teary and depressed. Beign shown hope then having it taken from you again sucks big time. You’re not alone. I too work from home, and I have built an online shop and I have staff to run it for me. When I’m ok, I go in for a couple of hours, when I’m not, I stay home or make my poor husband drive me up there.

    There’s so many of us out there, it’s nice to hear we have company.

    [Reply]

    cathy Reply:

    we’re on the same ride by the sound of it. another big lesson is letting go of what people think of me. judgement is a human condition, whether we like to believe it or not. ignoring judgement is my biggest challenge. it’s a work in progress. wishing you health and happiness x

    [Reply]

    aussiebeachgirl Reply:

    Hi Cathy – Wow!! Your post was so enlightening for me, on a personal level. I have the most dreadful fibromyalgia where most days my hands, wrists, elbows, shoulders, legs and hips are excruciatingly painful, and I can’t function at a base level. Having suffered through the trauma of Ross River Fever some 4-5 years ago, I never connected the two conditions – until now! It beggars belief that neither did my doctors. Any tips on how to cope will be gratefully accepted! Thanks heaps for raising this connection. Cheers, heather :)

    [Reply]

  • Krystal

    Sarah, you poor thing. As a coeliac I thought life could be pretty grim. I truly feel for you. I love your blog and your books, I feel like I am experiencing true health for the first time, thanks to you, even though I have been on a GF diet for 3 years. If its any consolation, you are helping so many of us. Thank You for being so honest.

    [Reply]

  • Cherie

    Urgh!!! Sarah forks to hashi’s!!

    Im sorry to hear that you (and all the other posters) are having a rough time at the moment. Its hard to remain positive and accepting when things come crashing down.

    I have recently moved to London from Brissy and am in the process of trying to find a new Dr after years of telling my Dr that im still having thyroid symptoms and being told that my T4 levels are fine (I too have hashi’s). I have hopefully found a Dr that will test my T3 levels to see if the T4 is converting to T3 properly and if not then changing my meds to T3 along with T4. Have you heard much about T3 testing in Aus? There doesnt seem to be much about it.

    Currently I have a cold, my mother is getting worse with terminal cancer back in Aus, trying looking for a job along with having the extreme downs of hashi’s – not a great combination! Also its getting colder!

    Here’s hoping that at some point everyones lives will plateau to enable us to live each moment – not necessarily ‘to the max’ but so that we can being again to enjoy life and embrace the things that make us happy.

    Sending love
    Cherie

    [Reply]

    UK Reply:

    Hi Cherie

    Welcome to the UK!!!

    I have an underactive thyroid too and the only drug you will be prescribed here is thyroxine, unless you find a private one (and if you do, let me know if you have any luck being prescribed anything else). I am always told my levels are “normal” (so sick of hearing that word) despite living day in day out with all of the symptoms!

    If you need a hand with the job search, let me know (I’m working in London) and I’ll see if I can help.

    Kristan

    [Reply]

  • http://Conjurup.com Annajane dalton

    Sarah met u on MC. Coconut scraping – anyway I had a terrible time with my thyroid. Did research and slowly withdrew from thyroxine and take kelp. It was probably silly and risky but I didn’t tell my doctor. Had a blood test and my levels are all good. I too had over active then iodine then as is usually the case went under active. I was feeling like crap more than I was feeling good so for me I felt something natural was what I wanted. I also found I am vitamin d deficient which affects metabolic rate etc.very common in women. But I haven’t felt better in 15 years. I wouldn’t say I am a symptomatic but symptoms have diminished significantly. Take care it is very depressing for you

    [Reply]

  • P

    dear sarah..have you tried something called bee breath meditataion or brahmari…it is supposed to help the throat chakra..read abt it at a site called cauldronsandcupcakes…its easy to do and maybe this will help you sleep..lots of love ..p.

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  • Keisha

    I’m currently lying in a hospital bed for my second weeklong admission in 4 weeks for a severe colitis flare up. This post gives me faith in my ability to heal once I get to go home. Thank you x

    [Reply]

    Sarah Wilson Reply:

    Blessings to you xx

    [Reply]

  • http://www.twomoderncavewomen.com.au Two Modern Cavewomen

    For those with Adrenal Fagitue (been there too), ask your practitioner about Activated B6. I’m not sure if Vitamin D drops are available over the counter, but Bioceuticals do a practitioner only one if you have a naturopath.

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  • http://Carlyfindlay.blogspot.com Carly Findlay

    I have a chronic illness – a skin condition called Ichthyosis. It looks like severe sunburn. Sometimes I get bandaged like a mummy in hospital. I need to put vaseline on my whole body each day. While its sore most of the time, most days are manageable. Today (and yesterday) it has flared up and I have infection on my legs. I’ve had to have one and a half days off work for bed rest.
    Like you keeping warm and eating fats helps. My body uses lots of energy renewing skin (I shed 28 days worth of skin in one day) and keeping my temperature regulated.
    I keep myself very busy with full time work, freelance writing and tv, plus a busy social life. I keep busy to prove I’m more than my illness.
    It’s socially challenging with stares, assumptions and people harassing me about my appearance. It gets tiring. Most times I just want to get on with my day and not have to explain why I look this way. However I’ve used it to my advantage, creating a writing and speaking career out of my experiences. This year I spoke in england at a university – at a conference about appearance. it wouldn’t have happened if it weren’t for my skin and blog. More info can be found at http://carlyfindlay.blogspot.com
    You do so well to keep afloat Sarah. After reading this, I have greater insight into your achievements.
    Carly

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    Two Modern Cavewomen Reply:

    Carly, that sounds awful, but as someone who sells and uses only natural products for a living, I’m concerned about what vaseline is doing to your body long term, it’s petrochemical based. Is there a natural alternative you’ve tried? There’s aloe vera gels around designed for burns and OptiDerma make a burn spray as well.

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    Carly Findlay Reply:

    Thanks for your comment and concern, TMC. I’ve found this treatment of Vaseline works the best for me (after trying a huge range of treatments – I was born with this condition), and I’ve got a top team of dermatologists backing me up. Though I have treatments similar to burns patients, it’s not a burn. I’ve spoken to the dermatologists about the petrochemical risk and they say it’s low.
    You can read (but please dont judge) my treatments here. http://carlyfindlay.blogspot.com.au/2011/03/carlys-guide-to-top-beauty-survival.html

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    Two Modern Cavewomen Reply:

    There are many instances where something that’s potentially harmful is the lesser of 2 evils. It happens in my life too, and when people get cancer, chemo is rotten awful nasty stuff, but quite often, the only way to stay alive.

    I took antibiotics for 12 months to kill a rare bacterial infection, and while they left a lot of damage behind, the infection was doing MORE harm. So, I took them.

    I’ll go check your blog. No judging here, I’m always just on the lookout for people to switch to more natural products, whether I’ll selling them something or not. Being sick sucks and if I can help someone a little, that makes my day better :)

  • http://Carlyfindlay.blogspot.com Carly Findlay

    TMC – definitely, and I choose not to take the drugs that can significantly improve me because of their harsh side effects. I’m leading the best life I can on quite minimal treatment. I’m very well and very happy. The Vaseline acts as a barrier to infection, and if I were to use other products to moisturise, the dryness and risk of infection could increase, and if infection gets into my bloodstream, it’s fatal. I use antibiotics to clear infection. I need to, to keep alive. Thanks.

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  • http://www.twomoderncavewomen.com.au Two Modern Cavewomen

    Ah, the Vaseline is a barrier for infection. I was wondering what the purpose of it was. Makes total sense. Staying alive & being healthy and happy is very important :)

    If I were in your shoes, I’m sure I’d be doing exactly the same thing. Minimal drugs and doing what I can to not have to take antibiotics, but when you have to, take them. I’m sure, on the inside, you’re way healthier than my dopey body is.

    I take the minimalist approach too, which is why I’m going grey, I don’t really EVER wear make-up, and my skin care regime is kept to a minimum. Fragrances are kept to a minimum but I try to get used to smells that I like so I don’t freak out everytime I notice a smell.

    The diet is pulled back to ‘cavewoman’ status. We all do what we can to lead the best quality of life and what works for one person doesn’t work for another. So happy you’ve found a regime that’s doing it’s job. I’m still working on food that will balance me, it’s not a fun job!

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  • Penny

    Great post Sarah, thanks for sharing. Hope you have better days soon xo

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  • Sally Jackson

    I love this blog. And I love the commenters! I just scribbled down half a dozen things I want to check out from both the post and the comments.

    I’m fortunate in not suffering the serious condition you do – I’ve just got the usual IBS cluster of stuff and inflammation symptoms (sinus issues, some osteo arthritis in my finer joints). They have been a blessing to me because they aren’t bad enough to severely impact my life but are bad enough to make me very health-conscious. My mum, however, has two absolutely wicked and rare auto-immune disorders: pyoderma gangrenosa and primary biliary cirrhosis.

    Thanks so much, Sarah, for your openness and generosity. It isn’t good at all to hear how bad things can be for you, but paradoxically this post (and all of them) is so inspiring because it gets my mind going on things that I can do, actions I can take, which is very motivating.

    Take care. xxx

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  • http://www.missfoodwise.com Regula @ Miss Foodwise

    I feel silly replying as there are so many comments already ;-)
    I only just found out I have AI and I don’t know much yet, I have to wait for 6 months to see a doctor in Belgium… I am on mild medication now, hoping I don’t need the heavy stuff in 6 months
    All I know is, I need lots of sleep and I wake up a lot at night.
    I need carbs and red meat, these things make me feel good.
    (I was a vegetarian and this did a lot of damage.)
    Finally, my job however fantastic is my biggest trigger due to stress and sitting behind a screen for 8-9 hours. I get really negative during the week as I don’t have anything exept work as I’m too tired to do something for myself after working hours.
    Thanks for your post, finding your blog last month was good for me.
    They don’t tell you here in hospital that living with AI is such a hell. I hate it when they say, it will be okay.

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  • Allison

    I have never tested positive for any thyroid antibodies but had clear thyroid inflammation which kicked off after what I think was strep throat. Streptococcus is a nasty nasty bacteria which can cause all sorts of health problems – in me, it kicked off the thyroid problem and then also culminated in severe panic disorder (now under control with simple antibiotics).

    Anyway I just wanted to share that selenium has been invaluable to me in calming the thyroid inflammation down – it’s what I used when it first kicked off and it worked after about 2-3 days. The inflammation came back when I was without selenium for a week, and then went away again when I re-started selenium. I’m on T3-only medication as T4 medication is an absolute disaster (in any form natural or synthetic). But selenium has been a godsend.

    It’s wonderful stuff and it’s very easy to be deficient in it since our soil is so depleted of minerals.

    Good health to everyone :)

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  • Pingback: Victoria Musgrave | Living with Scoliosis

  • Candi

    Thank you for sharing your story.

    An exercise which was recommended to me was to drop my chin down into my neck firmly for about a minute, as the thyroid is like a sponge and this action will squeeze anything toxic out. Then after the minute tilt your head right back to allow new blood flow. I find when I am having a bad thyroid day this exercise can boost my energy.

    I hope it helps someone else too. x

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  • June

    Sarah, I wonder if you have heard of Joe Cross ? He has worked miracles for so many people with his ” Reboot Your Life”, he suggests in his DVD & web site, to have nothing but fruit & veg. juice for 60 days. 80% veg. & 20% fruit. Certainly worth trying.
    http://www.FatSickandNearlyDead.com

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  • http://http//movementoflifeosteopathy.com.au Jess

    Sarah.
    Your ability to see the health in the suffering is inspiring.
    Have you seen a cranial osteopath before? I often read your posts & think I would love to treat this girl!
    I can give you more information if you would like
    Keep up the great work.
    Jess

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  • Nicole

    My worst days, like today, I can only cope and make it to lunch time if I sip ever so slowly on a warm cup of full leaded coke. Full of everything bad, but somehow it brings me back some life force. It should do the opposite, however its midday now and I can almost bring myself to see out the end of my work day without having to go home and fall in a heap.
    I usually try to trick my body with a big glass of mineral water and fresh lemon squeezed in to it… that didnt work today, so I had to resort to the evil black stuff. I feel like a failure for doing it, but I know that by this afternoon I will be back on track with my usual healthy and nutritious ways and this doesn’t happen all that often.

    [Reply]

    Genevieve Reply:

    Hi Nicole

    I read your comment and just had to tell you that double boiled coke can be a great cure for Bali belly (well, gut bugs in general). Worked for me within a few hours when I was there some years ago. We call it Draino for the gut! This treatment for belly bugs was given to my partner when he was a young teenager in Bali and very, very sick with some really aggressive gut bacterial overload (by a doctor from South America, who had travelled to many eastern countries) and he fully recovered within 24 hours.

    Given the strong gut connection with autoimmune disorders (my assumption, as you haven’t mentioned you have one), you may well be onto something, so please don’t feel bad about keeping some in the cupboard for medicinal purposes (we do too). Thanks for sharing and many thanks to you Sarah for making it possible with your fantastic blog!

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  • Gabrielle

    So sorry to hear you crashed once you came home, Sarah…

    And yet, as a thyroid sista, I had wondered if you might experience that a bit (I know I have to modulate what I do quite a lot, and biting off ‘too much’ even if it’s the beautiful life stuff, can be something I pay for later – and, you guessed it, knowing what’s ‘too much’ is a moveable feast, too).

    For me, there’s aching every day, mostly feet, legs, arms, and especially in the mornings (such a charm to wake up to).

    But it’s getting SO much better with changes to my diet (no sugar, less refined carbs, less goitrogens which inhibit thyroid function) and a whack of supplements (including selenium, magnesium)

    On a bad day, I’m taking every moment slow. And I pull out a little silver bracelet with snails on it to remind me to do so throughout the day – sort of gives me visual ‘permission’ to do that.

    And I get more magnesium into me – helps smooth muscles relax, and I can feel my whole body unclenching. A great natural source is organic raw cacao – so I get a hot chocolate of that going with a bit of rice milk and even a dash of stevia if I’m craving sweet.

    But, for my body, I’ve learned if I give in to sugar/refined carb cravings, I’m just prolonging the pain and stealing from my future self… So I don’t do it anymore

    And, anyway, the cacao is a wonder drug in curbing those kind of cravings :)

    Hope you’re feeling back to you soon…

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  • June

    For anyone interested in the Reboot Juice plan, last July, Joe shared with us his regular 2 weeks he does 3-4 times a year. The following are some notes I copied for his first day.
    quote.
    Awesome response from you all….so great to read your posts and see that you’re all over the world!! So Cool!! It’s nearly 1.30am here in LA so I thought I’d post what my first 3 juices will be tomorrow for those that are interested!! 1. carrot, orange, pineapple 2. carrot, apple, strawberry 3. carrot apple, lemon, ginger. I’m planning of drinking 6 or 7 large glasses of juice in total tomorrow….I’ll also be going for an hour long walk!! Day 1, bring it on!! Joe

    Okay so day 1 here in sunny LA….been a busy day so far for me, which is how I like it!! Already had my 3 juices I posted before and just finished juice number 4. It was cucumber, spinach and pear. About to get started on Juice 5… a beet, carrot, lemon and ginger. Then my last three juices of the day will be 6. celery, kale, green apple 7. cucumber, celery, kale, spinach, parsley, lemon 8. cucu…mber, celery, kale, spinach, broccoli, parsley, dandelion. Given the time zones I work late and get up late, which means even though it’s nearly 3pm here in LA I’m going to be up till 3am so it’s more mile noon for me in case you’re wondering why I’m only up to 4 juices!! I feel great….not hungry at all. Been drinking plenty of water and therefore have made many trips to the bathroom but that’s all part of it!! :-) I’m planning on an evening walk along Sunset Boulevard for my exercise! Also, I’ll be doing some core exercises like sit-ups and push-ups…probably 100 each in 5 sets of 20. Abby, my trainer will be pleased!! As the day goes on I’m sure I’ll get a little sleepy, so I may take a power nap for 20 mins later but so far so good. I’ll be reading all your posts….it’s the least I can do given the response…thanks for asking about any events I will be doing out here in Ca during August….I’m scheduled for a couple….more on those locations later but Fresno in next and it’s on Sunday August 12. Ok, I have to get back to work..and back to my juice…Loving day 1 so far!! Juice On!!

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  • Marina

    Hi Sarah,

    As a Hashimoto’s patient myself I can relate very well to how do you feel. From all what you describe thyroid problem is NOT your main problem.

    Hypersensitivity to light, parfume and other smells, intolerance to noise, avoidance of other people, energy crashes and cravings for carbs, sweets, chocolate and fat point that you have an adrenal problem that in turn affects your Hashimoto’s and makes it worse.

    So, it is not your thyroid day, it is your adrenal day.

    Contact me if you need somebody to work with who helped hundreds of people to recover from adrenal fatigue, reduce their thyroid meds, improve thyroid and immune function and even reverse Hashimoto’s in some cases and I will kindly point you to the right practitioner.

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  • lorry

    Hi sarah,
    It is reassuring to hear stories of other hashi sufferers, it makes me feel as though there is another type of normal. Pregnancy triggered my thyroid disease many years ago and I always felt like a pathetic mum as I never had energy for my 3 children. unfortunately my daughter inherited the same genetic weakness and as I watch her at the end of every day with her 3 young children,exhausted, surrounded by mess and counting the minutes till bed time my heart bleeds as I know how hard its been for her and give her whatever energy I have. I have the time to give myself the care and food and exercise I need for my health but our thoughts have to go to all those young women who are juggling babies and time constraints and lack of funds and maybe offer help, understanding or just send energy to help them through every day. lorry

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  • caro

    Hi Sarah, I don’t normally leave comments anywhere but I feel compelled to acknowledge your story and to say thank you – thank you for sharing this with us, I felt really moved reading it. You are a brave and beautiful person and I sincerely hope that your thyroidy days are few and far between.
    Love and light
    Caro x

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  • http://the-labyrinth.com michellina van loder

    Hi Sarah

    Thank for this post, between this and the comments above, I don’t feel so alone. I’ve been tested and diagnosed as sensitive to various chemicals. At the moment I wear a mask everywhere; I can no longer attend classes at my uni; and I’m a miserable mess. I blog about coping and it’s here, where I think it helps me, as I feel good when I help others in my situation. http://the-labyrinth.com I’m sorry you have these days, but I’m grateful you’ve shared this. For me, just the perfume sensitivity alone, makes for a lonely existence and on my bad days I feel as the whole world is against me. But going from this page alone, it’s not!

    Cheers

    Miche

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  • Victoria

    Wow, Sarah.
    Thank you for sharing. I’m sorry you or anyone has to go through such pain. I have not been diagnosed with an AI illness, but am very sensitive to chemicals, smells, perfumes, heat, light, noise etc. I suffer from migraines, eczema, anxiety, food sensitivities, all sorts of vague things. Some have got more prominent over the years, others I’ve learned to manage, particualrly by being gentle on myself (much easier said than done).

    Some days I cope better than others. It is a delicate balance of getting enough done to not feel overwhelmed and keep on top of life with children etc, and taking care of myself (a pattern of self neglect that is hard to change but I’m trying).
    My triggers – stress, lack of sleep, food chemicals like MSG, colours etc.

    Love your posts, and generosity. Please keep being gentle to yourself, and take care, I learn a lot from you, and am reminded of the importance of looking after me.

    Thanks again x

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  • http://foodinfluential.com Prana Arnold

    OMG – you’ve just described my EXACT bad FIbromyalgia day – to a T! Thank you…

    [Reply]

    Kaitlyn Reply:

    Me too! How amazing is it for someone to explain exactly how it feels with F.M! I always find it so hard to put into words! People just don’t understand!

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  • Mona B

    On 24 May, BBC Radio 4 here in the UK ran a feature in their consumer programme You and Yours which addressed concerns in this country with low-energy light bulbs. Consultants, dermatologists and patients were featured. Two women with Lupus and migraine respectively discovered that low-energy bulbs badly aggravate their conditions. A dermatologist said that he believes the bulbs worsen eczema, psoriasis and other skin conditions.
    I am a chronic eczema sufferer but for years have controlled it with diet and alternative therapies and topical ointments. In December 2011 it suddenly worsened and I was driven to use cortisones, which I have not applied to my skin in over 20 years. Nothing worked. After listening to this programme, I realised that I had switched all my bulbs over before Christmas…and so, on 24 May, I went out and switched back again. Now, 4-5 months on, my skin is back to normal again.

    The programme is available here: http://www.bbc.co.uk/programmes/b01hxpxr
    But if you can’t access it outside the UK, here is the gist of it:
    1. Low-energy bulbs contain mercury. Fact.
    2. Low-energy bulbs use ultra-violet light.
    3. Low-energy bulbs create a magnetic field that can extend to a radius 5 feet.

    The dermatologist said that in his experience, the patients of his who were worst off were using low-energy bulbs in their bedside lights. Both he and the consultant believe the above factors contribute to the aggravation of the conditions discussed.

    The solution? Well, I had to stock up on those incandescent bulbs as they’ve been banned from sale here as of last month. A member of Parliament is lobbying to keep the old-style bulbs available on a prescription basis as she has discovered that many of her constituents cannot tolerate low-energy bulbs.

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  • SNEZANA

    On my bad days or even weeks, being alone and eating, sleeping and staing calm is the only way l can even imagine getting through the dread. My brain just seems to freeze. Thinking is hard and memory just isn’t the same. So, Sarah, to blog on your bad days, l say you’ve done well.

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  • Kelly Ann~

    Check out this actress Facebook pg- she suffers from the same thing

    Has tons of helpful info—Gena Lee Nolin’s journey to health and happiness!

    http://www.facebook.com/thyroidsexy?fref=ts

    [Reply]

  • http://www.project-frankie.com Frankie

    (((hugs)))

    I’ve had fibromyalgia for 20 years and at it’s peak (about 10 years ago) I sometimes had a similar day..not so much of the inflammation though. Settled a lot now. Ankles are the worst. Morning walk to the loo can be tenuous! xxx

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  • Adriana

    Yes the lonliness of it all, sometimes even the closest people to you don’t really understand it and after a while I feel like all i do is complain about it. I was initially
    diagonosed with Gastroparesis (stomach paralysis) and after 3 years of struggling along I was diagnosed with visceral hypersensitivity (hyper sensitive stomach/gut). I don’t even know how to explain it to people! I try to think about the meaning of it all (if there is any meaning?) but I can say it has thought me a lot and it opened up a whole new world of interests.

    [Reply]

  • Wendy

    Hello Sarah
    Interesting to read that you & so many others struggle to cope.
    I have hashimoto as well & also experience lots of digestive
    Problems. My doctor recently advised that I try out the Specific
    Carbohydrate diet.
    I Plan to give this a go see if it lessens these horrible up &
    down symptoms. I find I am influenced by weather humidity
    in particular. Having a sympathetic supportive #instaplus #Velvic #None & dairy free eating & I agree that exercise helps
    if one can drag the bloated aching puffy flesh to it. I have recently gained services of a wholistic personal trainer who has good understanding of the thyriodal type so this is also going to help me. What gets you down I think
    is the chronic nature & the tiresome realization that you have to keep
    Fighting the battle. Having a down few days no doubt optimism will resurface.
    Having support is essential so blogs like this are good thanks.
    Will return.

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  • http://dogrosehealing.com.au Kelly

    Wow. Unbelievably challenging. :( Thank you for sharing honestly your struggle and being REAL.

    I’m going to sound highly biased because I use it professionally, but have you tried using Emotional Freedom Technique? It’s a meridian therapy like acupuncture but done with your fingers and can be done easily at home. It’s beneficial in all sorts of situations – mostly emotional and mental but physical also. Very relaxing and soothing on a number of levels.

    [Reply]

    Mona B Reply:

    Kelly, I love EFT. It has–and is–helping me through some very difficult times. I agree, it is so beneficial, simple and above all, safe.

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  • jacinta

    I would not wish “Imagine your worst hangover and times it by three” on anyone.

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  • Paul

    Hi Sarah, whilst I do not share your thyroid problem, I do have a suggestion. Years ago I came across EarthClinic and boy am I glad I did. Being a dad with my child 50% of the time, I am not necessarily the best at having a well-equipped paediatric drug cupboard. So when I or my daughter are ill, I turn to EarthClinic. It has rescued me so many times. Look out for posts from ‘Ted from Bangkok’ because his advice is so accurate it is uncanny. And the best thing is that the remedies rarely involve a pharmaceutical company….
    http://www.earthclinic.com/CURES/thyroid.html

    [Reply]

  • Jennifer

    Hi, thanks for the great post and information from fellow readers. Several years ago I experienced vertigo, tinnitus, dizziness, abdominal pain, bloating, diarrhoea and vomiting, etc. By a process of elimination I discovered that artificial sweeteners were my main problem. I am now much better and carefully read every label. Artificial sweeteners are added to many products including toothpaste and lip balm. Just a thought for anyone who is experiencing similar problems and is trying to discover the cause.

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  • http://www.thecupthief.wordpress.com Laura

    Thanks for this post. My dad was recently diagnosed with Graves Disease and I’m slowly finding out information about thyroids and how they work. My grandmother died with complications from anaemia with lupus and i am guessing i will probably suffer from an autoimmune disease when I’m older. Thanks for sharing such an intimate post. :) xo

    [Reply]

    Janet Reply:

    Sarah, thanks for this post, which I read with interest. Last time I looked at your blog you were hiking everywhere and I couldn’t believe you had so much energy considering the thyroid problems! In comparison my energy varies but at present it’s an effort to get through the day – I have to pace myself between “jobs”. Mind you, I am alot older which could explain it! In 1994 I had Graves Disease then about 12 years ago had to start taking thyroxine – I guess it’s Hashimoto’s I have but not sure if I have had an official diagnosis. I also have a multinodular goitre which needs to be monitored each year. I feel as if I have maintained my thyroid problem (whatever it is) over the years despite the ups and downs (including breast cancer). I also take heaps and heaps of supplements which work very well. The point of my post though, is to say that after a year or so of severe stress (more so than usual!) the integrative medicine doctor I have seen recently believes I have a copper/zinc imbalance – ie, high copper, low zinc. And high red cell folate. I believe this is all related to the stress and is linked to the dreadful way I feel now, rather than to any “thyroidy” days. Sarah would this be something that you have ever had checked out? Or has anyone else had a similar diagnosis/problem? Are all “thyroidy days” connected to the thyroid or something else?

    [Reply]

  • Lissa

    I am half way through a BHSc majoring in nutrition, and if I’m honest I’d have to say that I embarked upon this degree to solve my own health problems. I used to have a high-flying corporate job, and am the typical Type A high achiever, so no surprises to find I ended up on the verge of adrenal insufficiency and auto-immune disease. I do see myself as incredibly fortunate though, as my thyroid antibodies were elevated, but I was caught early enough that my T4 was still within normal, even though the thyroid antibodies had skyrocketed and my TSH was getting high too. During the BHSc course I discovered a brilliant naturopath. I thought that it would be the ‘blanket mantra’ of give up dairy and gluten etc etc. But what I really wanted to share here is what surprised me, and info that I haven’t yet seen posted. So I thought I’d add it to the wonderful information that people have shared here to date just in case it helps someone like it has helped me.
    My naturopath got me to have a blood test for IgG antibodies which tests a vast number of foods. Healthscope is the pathology lab who do it, and I was completely surprised to discover that it is not as clear cut as gluten vs gluten free (and this is why I think it’s important to discover exactly what your body has developed antibodies too). IgGs are actually part of our delayed immune response – so still allergy markers if you like but not like the more immediate IgE allergic response. The thing with IgGs is that they can form immune complexes that may lodge in tissues and pre-dispose to chronic disease syndromes. Not great.
    I discovered that for me, I was actually allergic to a range of grains that consisted of both gluten –containing and gluten-free. Dairy was also in there to, but not just cow’s milk, unfortunately sheep and goat’s milk as well, along with some other very random foods such as lemon and cashews, cola nut and tomatoes. All up there were 22 foods that I should avoid completely. I guess what I’m trying to say is don’t just assume it’s gluten-containing grains and dairy; you may actually be allergic to other grains that don’t contain gluten, as well as other foods that you’d not think of. From what I’ve learned to date in my Bachelor course, it is certainly a multi-factorial situation, but if you can at least identify exactly what foods are causing inflammation/allergic response rather than just doing the blanket dairy and gluten free thing, I think that’s a big help. I wanted to share my success story (as I now feel a lot better and my thyroid antibodies have decreased) just in case someone out there had gone dairy-free and gluten free and still felt like crap, and just in case they may be helped by doing an IgG test as it has helped me.

    [Reply]

    Amy Reply:

    Soo true Lissa! I had IgG testing too when I was doing lots of testing for ME/CFS causation. Leaky gut is one of the biggest contributors to IgG allergies, because of the undigested food particles ability to leave the permeable small intestine, which sets off an immune response to these foreign bodies. My testing showed up too many foods to mention, but with a constant effort to heal the gut (with supplemental bone broth, Thorne’s Perma Clear, probiotics, fermented foods etc) I can tolerate some properly prepared nuts and eggs now which were on the list. Soy, dairy and legumes still a no go. I definitely think gluten is generally best avoided but for some people raw, organic dairy sits well with them and thats cool.
    Unfortunately conventional medicine doesn’t acknowledge IgG allergy responses, unless you find a holistic doc. I am sure it will become accepted in mainstream medicine soon.

    [Reply]

    Lissa Reply:

    Thanks Amy for sharing! My conventional doctor is over the moon with my blood results of yesterday — my thyroid antibody level is now within the normal range! She cannot believe it! For the first time in a decade, and that was all due to just identifying what foods are not right for me through the IgG test (it was a naturopath that ordered the IgG testing for me); all my other parameters are now within normal too (I’ve always had PCOS and now everything there is now normal too!!!). My conventional doctor was so excited she wants to write up my case (which I hope she will!)… It’s now up to me to stay on the right diet for me and hopefully the results will be just as good in 12 months time! IgG testing all the way! :)

    [Reply]

  • Sharon

    Hi Sarah – just wanted to say thanks for the post.. I totally understand and go through these thyroidy days too.. (although I have not been diagnosed with AI) & you feel so alone in the world – it is extremely hard to explain to people who have not experienced this and this post reminds me that there are others who are in the same boat!! Therefore enabling us to help each other with advice and support with what helps us through! One part I’m super passionate about changing in our world is the over-use of toxic chemicals.. I SO hear you about the perfume thing!!! I’ve been wishing they’d ban the stuff too!! It totally disables me and I get so overwhelmingly upset when exposed.. My family has called me the ‘canary’ for years and I totally agree with you that we are the canaries down the mineshaft.. Able to pick up & detect what is not working for or supporting us!
    I was diagnosed with CFS/fibromyalgia a few years ago and thyroid tests always came back ok.. Recently I had whole lot of new tests (I asked for AI’s eg hashimoto) to be tested but she was pretty sure I needed to be tested for this other disorder first – which if I wad positive she said (Biomed Dr) would heal any thyroid issues when treated correctly.. So anyway this disorder was Pyrroles Disorder or Pyroluria & I tested positively – so it was quite something after all these years of health issues, multiple chemical sensitivities, CFS, and all that goes with impaired immunity I guess.. All the tests.. Practioners etc.. To have a diagnosis was quite liberating! It felt as though I was given a special key to a secret doorway.. To wellness. And so that is why I am sharing this with you today as I thought there may be others out there who have the same issues / disorder and could find some hope by looking into this as it is not that well known or recognized in mainstream medicine (due to treatment for it being nutritional/vitamins etc) rather than medicines.. Basically with Pyrroles there is an abnormality in the
    haemoglobin synthesis which results in the person not being able to utilize / uptake their zinc/B6 – and losing large amounts of it.. Which equals all sorts of health issues as you can imagine.. I’m still learning all about this disorder so best to look up info for clearer understanding of it all!
    So I also wanted to share with you that I was feeling a little resistant a while back when someone suggested I look into the Body Ecology Diet.. I was so over the word ‘diet’ so it put me off at the start.. But now I’m so glad I eventually got over that & gave it a go.. It actually fits in with all of my beliefs on health & wellbeing.. Eg eating a probiotic rich diet & healing the gut = health & wellness etc.. & it was at the workshop in Adelaide run by Maria Hunt (senior head of Body Ecology in Oz) that I learned of Pyrroles disorder.. I am in stage 1 of the diet still but I already know now that I am deeply healing my digestion/liver/gut etc & am noticing beneficial results.. I have just started on vitamin therapy for Pyrolles today & am feeling hopeful that all is getting much better now!
    So I hope this looong ;) bit of info may help some of you out there in the same boat ..

    [Reply]

  • Virginia Gordon

    It is a gift of great generosity for all of you to share your experiences with such honesty and to help others find calm, support. Newly diagnosed I am deeply grateful to you all.

    Virginia

    [Reply]

  • Jacq

    Hi Sarah,

    Thank you for your courage & honesty. It really helps to know that I’m not alone in what is going on for me. I was diagnosed with Hashimoto’s 6 years ago but it’s only this year that I’ve really had the courage to get out of denial and make my health my number one priority. I am blessed to be supported by my mother and boyfriend but I must admit it has been disheartening how little most medical practitioners know about/ care about truly managing AI disorders – its all about the thyroid medication and that’s it.

    I can’t express my disappointment when the ‘holistic’ doctor that I went to when I was still exhausted and barely functioning, said to me,”well you’re on medication, and your blood tests look ok, so what do you want me to do?” I asked her to look at my adrenals (as my mum was a doctor and she & I had read this book called Hope for Hashimtos that my boyfriend found for me) and was basically ignored after a single blood test didn’t show anything.

    Turns out I have adrenal fatigue as well. Thank goodness for my wonderful naturopath, kinesiologist, mum, my boyfriend, my caring GP, and this book. I can’t recommend it more highly for anyone who has Hashimtos – really comprehensive and lots of useful resources, ideas and strategies. I must admit I am wondering if I can get a consultation with the author as I really haven’t been able to find a practitioner near me in Brisbane who can help me bring it all together and magae it in a holistic way.

    Anyway I hope this book – if you haven’t read it already is helpful.
    And thanks again

    [Reply]

  • kate in uk

    I just wanted to thank you so much for sharing this. I was diagnosed a couple of years ago with hypothyroid and just given thyroxine and left to get on with it. I also have IBS and fibromyalgia, and regular migraines.

    EVERY DAY feels like your thyroid days, just standing up is a struggle, my quality of life is nothing, and I feel im missing my childrens childhoods.

    Reading your blog, and the comments has really helped me feel less alone, feel that my symptoms are real, but are not a portent of something terminal (sounds dramatic but when you feel so chronically poorly and the dr keeps telling you you are fine, go away, you really start to wonder)

    Also thank you, as your blog and books have given me real hope that I can take charge of this and get my life back!!!

    I am starting the summer challange tomorrow, though for me in the UK its an autumn challange.

    Thanks again, and good luck to all fellow challangees, heres to taking control

    Kate xx

    [Reply]

  • Ashlee

    A friend just put me onto this website after telling her what I was going through.

    I never thought anyone would understand how I feel, day in, day out! Just knowing that I’m not alone makes all the difference!

    So thank you for sharing your story.

    Ash x

    [Reply]

  • Bree

    Oh Sarah…thanks for being so honest about your Thyroid bad days…I read it and thought thats me today, struggling supposed to be going to work..but headache and just so tired..and can not muster up the energy needed to get there…due to work requiring drs cert for every day off…I must now muster the strength to go and sit in a waiting room for hours. Luckly i have a fellow sufferer who is willing to sit with me. So i spend my day off where i should be in bed just resting and sitting outside in the sun and playing with my dogs, waiiting for a dr to say yup here is your cert…wasting tax payers money when all i need is a me day to refresh and get back into the working way of life..hugs xxx

    [Reply]

  • Leanne

    Hi everyone,

    I know the feeling well. I am struggling right now with a flare up and it is awful. As a working mum with 4 kids, I hate my thyroidy days more than anything! I can’t wait to leave work after feeling terrible all day, then I get home and feel like a bad mum because I can’t think about more than I have to just to get us through the afternoon/night.

    I so wish I could work out a way to have a job in which I worked from home, in my own hours, but financially we can’t afford for me to leave the job I have in case I can’t find another one. And when I am well, I enjoy working, its just when I am not that it is hard.

    Thank you for sharing this Sarah, I need my friends to read this, so they can see what this awful illness feels like.

    Leanne xo

    [Reply]

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  • anon

    You might want to read Ray Peat’s website. He is a biologist who has studied the effects of food on the thyroid for about 40 years. He has quite a lot of insight about it:
    http://raypeat.com/

    A year ago this time I noticed my thyroid was swollen in a photo ID. It is a lot less swollen and a lot of my fatigue and other symptoms are relieved from following his suggestions.

    Some other blogs/websites you might find helpful:
    http://www.raypeatforum.com/forum/index.php?sid=9c790395ad319f4cac2f35bcf1b4da49
    http://www.dannyroddy.com/
    http://www.arkofwellness.com/
    http://katedeering.com/

    [Reply]

  • Jeanne

    Something that helps me on bad-thyroid days, when I feel like my head is full of dirty socks: Run cold, cold water on my head. After a few seconds it feels good. If I had the ocean nearby I’d jump in, but the shower head works fine. Another thing to try: yoga shoulderstand or another exercise that gets blood into the throat area. I don’t know medically if this is right, but it feels good.

    Thanks for your wonderful site.

    [Reply]

  • Kiri

    Can anyone recommend a good endocrinologist in Sydney? I have been to one who offered no practical advice whatsoever. Any suggestions would be great.

    [Reply]

  • aussiebeachgirl

    Like Kiri above, can anyone suggest a good endocrinologist in BRISBANE ?? I’ve been noticing for a while now that I have a swollen thyroid because I can see a very puffy butterfly shape below the adam’s apple (if us females have one!). heather

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  • chantelle

    Hi… I am so greatful to have found this site and Sarah you are inspiring.

    If anyone can steer me in the right direction, I feel I am running in circles.

    I am a single mom to a child age 7 and strugglying bigtime. While pregnant, my mom passed and boyfriend left.. so, not sure if when this all started, but I felt depressed and tired alot of daughter was born, when she was 5 went to walk in clinic..becuase of sore throat. My family dr missed the boat for 5 yrs, i had fluctuating thyroid levels from just under 1 till 5 and many nodules, one beingn almst 4.5 cm. They removed my thyroid. I have felt progressivly unwell since. I have wheat and dairy issues now.Dr says im fine its just depression, I have tried pills, they make me feel worse! I am exausted often, I work out and feel out of breath.. I am a very type a person, and I am just not me anymore. I work full time, and single mom full time, i try and get to the gym on days i have some energy. .. I was never diagnosed with graves or hashimotos, but do I have? I feel I have an autoammune disease now, and who can diagnose? my naturapathic dr thinks i have major addrenal fatigue and autoammune disease and says its hard to diagnose? I am home today feeling like death, freezing cold, groggy and unwell.. and at a loss.. someone anyone, advise, chantelleharrison@hotmail.com

    [Reply]

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  • http://jessyclaire.weebly.com Jessica

    Hi!!

    Am so glad to have come across your website!

    I too have recently found out I have hypothyroidism… :/ So have been spending a lot of time researching stuff on the net (a lot of which has conflicting info), soooo, look forward to reading your blogs on this stuff!!!

    [Reply]

  • Chloe

    Hey Sarah & fellow readers!
    this is such a blessing to know there are others out there with chronic illness!
    I am an acute eczema and blepharitis sufferer (my eyes oil glands do not work) & am also a chronic migraine sufferer!

    I try to eat as natural, pure & organic as i can & drink BUTTLOADS of water-
    as well as exercising- i have found this has really reduced the frequency of my migraines.
    but this doesn’t always fix my ailments & so i have to take a form of the pill to sort out my “hormone levels” which trigger migraines – as well as light & sound.
    I am a fellow ear-plug & eye-mask wearer as well! I also have to resort to medication (only when extreme to take away the pain & nausea!)

    anyway there is my rant!
    xxx

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  • Valerie

    All those who have Hashimoto’s and hypothyroidism would potentially benefit from contacting the Real Thyroid Help website (www.realthyroidhelp.com) and asking for help on the Australian Group section.
    Also go to “Stop the thyroid madness” website (www.stopthethyroidmadness.com). “Stop the thyroid madness” is also a book, by Janie A. Bowthorpe.
    Also try the “National Academy of Hypothyroidism” website (http://nahypothyroidism.org/).
    You will have to do your own research because most doctors are terribly ignorant, and you will have to educate them.

    [Reply]

  • Megan

    I have been a Hashimoto’s sufferer for around 5 years. This combined with really bad PMS from day 12 (mood swings, tiredness, anxiety etc.)
    I find that natural progesterone helps with the PMS.

    I dont see an endo, but my integrative doctor put me on Dessicated Thyroid Extract and DHEA for the Hashitomos. It works well. But thanks to Sarah, I am cleaning up my diet and eliminating the sugar. I am hoping that in time I might by able to get off the Thyroid meds.

    Does anyone out there use Dessicated Thyroid Extract for Hashitomos?

    [Reply]

    Andrea Reply:

    Hi Megan,

    I am exactly the same, I have dreadful PMS and aching muscles become twice as bad week before period. I also wanted to try the Dessicated porcine extract. Are you in Melbourne? I can’t find a doctor who is willing to prescribe this for me. Also, do you need a prescription for the natural progesterone?

    Andrea.

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  • Rachelle kellett

    Hi sarah, after having chronic fatigue syndrome for many years as a teenager, i have been battling hypothyroidism naturally the past three years. Apparently now i need to be medicated especially if i wish to have a child. Im 38 now so think it may be the only way for this to happen. Just wondering if you take thyroxine? Am terrified of having to take it everyday for the rest of my life, but cant continue to live in this state either. Best wishes rachelle

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  • Juliana

    Can anyone recommend a good endocrinologist in Sydney?

    [Reply]

  • Andrea

    I am so happy to have found this website. I have Hashimotos (diagnosed 3 years ago) and have had so many ups and downs. At the moment I am on my 4th week of feeling so terrible. My T3 T4 and TSH are coming back in the normal range therefore Doctor says no need to change dose of thyroxine. I am considering trying the dessicated porcine thyroid med. Does anyone know of an understanding doctor in Melbourne who would be willing to listen to me and consider other options for treatment such as the porcine thyroid? I honestly feel there is no point being on Thyroxine if I feel so dreadful!
    Thank you Sarah, I am so thankful to now have this connection with other people here in Australia with this same disease. Andrea – Melbourne.

    [Reply]

  • http://feelbetterstill.com danielle

    I know there’s so much advice out there on what can help you to feel better, but I’m going to add this in just in case you haven’t heard of it…. Elemental Chi Kung (www.naturalmovement.info) is an incredible way of working with your own immune system, nervous system and energy system. The best thing is that it’s you working with you, you don’t have to rely on anyone else to help you to feel better (once you’ve learnt the forms). It’s changed my life completely. That, meditation, Biodynamic Craniosacral Therapy and now not eating sugar. I’m a new person.

    [Reply]

  • Paoli

    Hi Sarah,

    I am so glad I found your site.

    I found out Friday that my Thyroid levels are down (Hypothyroidism) and since then have started researching.

    All those symptoms=me, I thought it was all down to being a mature age mum and the type of work I was doing. If it wasn’t for the constant headache (that’s why i went to the doctor) I would still be ignorantly trudging along.

    I’m off to buy some bones and get a big pot broth going.

    Thanks again
    Paoli

    [Reply]

  • Marni

    Hi All,

    I sit here exhausted after dinner. A teary mess for a week. Eye pulsing every minute for 3 months straight. I feel like I am at rock bottom Hashimitos and for the first time write on this page so I don’t drive my flatmates crazy by telling them how exhausted I feel. I am sure a lot of you can relate.

    I was diagnosed with an underactive thyroid nearly 3 years ago. I had a small round of thyroxine but it took me overactive so started managing via an intense and expensive 2 years seeing a brilliant naturopath and some kinesiology. After feeling okay for a while, I of course like many people push myself hard with work and university and find myself now being told I have Hashimitos…. bugger.

    Like comments on Sarah’s page I wonder if I had listened to my body the first time and committed to exactly what it needed; would I be in this position now? …. I am not so sure.

    I lost a long term relationship I am sure as a result of this thyroid business as I was so exhausted and lifeless I had nothing left for my partner. Now 30 and single, I am having massive issues with angry acne like no other that I have never had before…. guessing this is thyroid related.

    I relate to Sarah being completely hyper sensitive to sounds and activity while sleeping. I am lucky to get 6 hours a night, wear earplugs and a sarong on my face to help. one sound and I am awake. BOOM.

    I feel like I am running at about 50% and hoping for my new round of thyroxine to kick in quickly. As well as that I think I need to be committed this time to making dietary changes for good. Has anyone done all or any of the following and notice a significant improvement?

    - no diary
    - no caffeine
    - no alcohol
    - limited complex carbs
    - no sugar

    Really looking for any advice anyone can throw at me. I

    I have been trying to date and have been a lovely guy but am so tired after a day at work or even on weekends, that by the time I see him I am so tired I can hardly talk to him and I now take it from his decreasing contact that I haven’t managed to stimulate him very much. I noted a comment Sarah made about finding it the biggest decision if someone asks you if you want a cup of tea. My god did I laugh… I completely relate, it seems like a mountain of decision and dating is like Everest…. need to turn this around quickly so I don’t lose a great opportunity. AND I am so concerned I won’t be able to cope having or raising children….. how do you copy feeing like this?

    It is so difficult that how we all feel every day falls on deaf ears (even though understandable as this is not seen). People just think you are a hyper sensitive hypochondriac…… any advice??? …. simply stop telling people the truth, is that the way forward?

    Regards, Totally terrified of the future (but I am sure it will get better!!!)

    [Reply]

  • Amanda

    Marni I got Hashimoto’s for the last 10 years and went gluten free 3 years ago. Best change I ever made. Now I’m trying grain free, and I feel the best. I also started using Lugol’s Iodine after reading a book. My doctor had already suggested taking a drop of Lugol’s but I was afraid because I read that Iodine could trigger autoinmune attacks, I believe that going gluten free stops the autoinmune reactions, so Iodine can really support thyroid function. I feel like a million as long as I stay grain free and supplement with Iodine and coconut oil.

    [Reply]

    Marni Reply:

    HI Amanda,

    Thank you for your email. I have been considering going gluten free.

    I use Lugol’s iodine too. I have been on it for 6 months and what is really interesting is when I wasn’t categorised as hashimitos my iodine (which started and pretty much zero) started increasing. Then when I really started to struggle and it was clear I was crashing, my iodine despite not missing a day of taking it had also crashed back down to nothing. I am now on two drops per day with blood tests impending in two weeks time. Very interesting link here though… and Vit D of course.

    So are you on thyroxin as well or managing purely via diet?

    What use is the coconut oil I am intrigued? I will look at those books for sure. Many thanks Amanda!!

    Marni

    [Reply]

  • Amanda

    The book is by Dr. Brownstein “Iodine, why we can’t live without” It all makes sense…

    [Reply]

  • Amanda

    Also I would like to suggest to everybody the book by Dr.W.Davis “Wheat Belly” is a book about all the complaints I read in this blog….

    [Reply]

  • Amanda

    Marni I would like to mention some of the simptoms resolved, for me, after going gluten free:

    Depression, headaches, muscle and bone pain, anemia, sore joints, mood swings, irritability, fatigue (I was exhausted all the time), allergies, frecuent colds and cough, etc. I feel and look younger, lost more than 20 pounds, my brain is working, I’m happy. I also got vitiligo and surprisingly I’m repigmenting.
    I hope you get better and you will atract a good man.

    I take coconut oil because is supposed to help the thyroid, it gives me a good feeling if I take in the morning, and yes I take Vit.D and B-12 and some other vit.
    Unfortunately I’m on thyroid medication, the gluten effect probably destroyed my thyroid and it may never recover, although I have heard of people recovering after going grain free.

    [Reply]

  • Jacq

    Manie, I too can recommend going gluten free although i was gluten free long before I got diagnosed with Hashimotos. Going gluten free resolved many issues i was having at the time including many listed by Amanda above. Since I have been actively looking to manage the Hashimotos (after very unsuccessfully attempting to ignore it for a few years), my diet has changed even further to also exclude dairy, alcohol, cane sugar, reducing caffeine (given up all except an occasional chai tea), and a long list of other foods (that i found i was sensitive to via a test from my naturopath). I have noticed significant improvement (mainly because before i made these changes, the hashiomotos had put my digestion so out of whack that i couldn’t really eat without being in severe pain and now i can – yay).

    I am also a huge fan of all things coconut – a marvelous food. I use coconut oil, cream, flour and nectar/syrup and I always feel good when i eat it. I cannot recommend it more. I also recommend a book called Hope for Hashimotos by Dr Alexander Haskell. It really helped me and gave me a place to start.

    I will state though that i am on thyroxin as well as compounded T3 and it does undoubtedly help me function. Having said that i still seem to be getting worse and I have not yet found the balance of all things (diet/environment/ healing modalities etc) to successfully manage my condition and function well. I cannot express how frustrated i am and it is extremely exhausting to keep trying to explain to people who cannot understand because it is not something they can see.

    I feel like i just need at least a few months just to sleep non-stop ( as I am eyes blurringly, head and joints achingly, brain foggingly exhausted!) and yet because the of all the healthy food that i am eating – people look at me and tell me how great i look! what is worse is my doctor just does not get it (and this is not the first doctor i have tried). how do i explain to a doctor that i don’t think i can function today, or tomorrow, or next week for that matter when she looks at my blood tests and goes – ‘well your TFT ranges are normal so your medication is fine.’

    I just hit 30, also single, and after several years of managing this condition, the hope i have that it will improve is getting a bit battered by frustration; ongoing outlay of expensive food, supplements (including vit D, iodine and many others), healers/ doctors, tests and prescriptions; and worsening exhaustion. I absolutely believe that the changes to my diet have helped enormously, just for me, there seems to be something else going on that I haven’t figured out yet.

    [Reply]

    Sarah F Reply:

    Jacq,

    Have you had your B12 levels tested? Pernicious anaemia and thyroid problems seem to go together and have many common symptoms including fatigue. When I’m low on B12 I feel like gravity is pulling me to the floor & I want to fall into a heap – definitely different from just being tired.

    You mention taking supplements, but even if you take B12 orally you may need injections if you can’t absorb it through your stomach, either due to pernicious anaemia or other causes (e.g. insufficient stomach acid).

    [Reply]

    Marni Reply:

    Hi Jacq,
    Thanks for your comments. Helpful to know some things help that I haven’t yet tried (coconut products). I can absolutely relate especially to two paragraphs (to refresh your mind below):

    “I will state though that i am on thyroxin as well as compounded T3 and it does undoubtedly help me function. Having said that i still seem to be getting worse and I have not yet found the balance of all things (diet/environment/ healing modalities etc) to successfully manage my condition and function well. I cannot express how frustrated i am and it is extremely exhausting to keep trying to explain to people who cannot understand because it is not something they can see.

    I feel like i just need at least a few months just to sleep non-stop ( as I am eyes blurringly, head and joints achingly, brain foggingly exhausted!) and yet because the of all the healthy food that i am eating – people look at me and tell me how great i look! what is worse is my doctor just does not get it (and this is not the first doctor i have tried). how do i explain to a doctor that i don’t think i can function today, or tomorrow, or next week for that matter when she looks at my blood tests and goes – ‘well your TFT ranges are normal so your medication is fine.”

    People including doctors it seems don’t have empathy or understanding of something they don’t feel themselves. I am told on a daily basis how great I look and maybe just need a decent sleep to not feel tired. cough cough. If only it was that easy…

    After a couple of years of underactive I still feel like I am getting worse at times and not sure how to manage this either. I thought I had it under control but alas… I think Sarah is right. When we feel affected the low, this is the time we have to STOP and let our body mend. I think part of this is diary management and protecting ourselves for rest time.

    I am still hoping for my head to not be foggy and to be able to concentrate and work and uni… come on thyroxin, please kick in.

    I simply wanted to say thank you for your comments and as a fellow 30 year old single female I can absolutely relate. Keep smiling. Marni

    [Reply]

  • Amanda

    Jacq do you eat enough protein? I think that people are scared to eat beef, pork, chicken, fish and all that good protein. Protein is vital for everybody and more so for people with thyroid problems. I eat lots of it as well as lots of wonderful vegetables…

    [Reply]

  • Jacq

    Yes protein is wonderful and i eat lots and lots of it. My diet now mainly consists of whole organic unprocessed foods with protein, vegetables and some fruit/ nuts and some grains (ie. rice, quinoa). Sarah F – I had my vitamin B levels tested a little while ago and I seem to remember that they were okay but i will have to go back and check (as i don’t remember which vit B levels were tested). I must admit i haven’t heard of pernicious anaemia? I have low iron levels which is why i eat a good deal of red meat and also now take an iron supplement.

    [Reply]

  • Amanda

    Marni you got to go gluten free, really gluten free, not a little here, a little there, and you will recover your life back, your stamina, your sense of well being. It might take a while, depending on the extent of damage to your body. Gluten is a poison for most people, read the WHEAT BELLY BLOG, and you will see how so many people notice the diference…

    [Reply]

  • Marni

    Hi Amanda, I admit I am a person that suffers from ‘ a little bit here, a little but there doesn’t hurt’ syndrome but I will take this seriously as if I can in anyway turn it around I will be smiling. Going now to check the wheat belly blog and I have been recording all the other suggestions as well to adopt. Hope you are well and thanks again!

    [Reply]

  • Marni

    Hi Amber,

    Thought I would respond as I have had a few people help me out with their suggestions above. The tests really start with a GP and include the following:

    1. TSH/T3/T4 and Thyroid Antibodies (the later required to know whether it is Hashimotos which an autoimmune disease related to Thyroid).

    2. Urinary iodine (which is an indicator)

    3. Vit D (also an indicator)

    4. Iron and VitB12 are both general tests to do with energy… could be useful

    I think these are the main ones to start with (I also find after 3 years of going through this you really need to be on the ball with the Doctors/people who treat you, know what they are talking about, insist on the tests you think you require as they are mainly covered by medicare Doctors tend to be a bit hesitant to order all tests at once and go through a process which can be slow – I am now more demanding). I recommend as many other bloggers above to start writing a diary of your symptoms. It helps to be pretty proactive with Thyroid issues by trying different doctors, naturopaths, other alternative options, giving yourself ample rest time in your week or day, cutting out certain things such as sugar, caffeine and alcohol (other people go even further and really make a lot of life changes).

    The idea is to try and get on top of what is going on and then slowly make positive changes to your life. A little tip is I keep papers and blogs I read on anything thyroid related, keep a simple diary and have signed up to blogs such as this.

    Good luck and hope goes well :)

    [Reply]

  • http://www.apinchofhealth.com Sherrie

    Hello Sarah,

    I just want to say I found your blog about a week ago and I have been reading some of your autoimmune posts. I have CFS/ME and more recently Hashimotos, I came down with CFS/ME after being on a health kick eating low carb, wholefoods, doing weights and the exercise eventually took my feet right from under me. Apparently, its been there since glandular fever and my health kick just bought it all out. Anyway, I found your blog interesting as I relate to a lot of your writings and wanted to wish you all the best, thank you for sharing and good luck :)

    [Reply]

  • Nikki

    Hi Sarah,
    What a wonderful blog you have – I am do glad I found it a month ago. I have hashimotos and have found the best thing that helps me is regular (I go weekly) chiropractic adjustments. I see the team at vitality in Melbourne – they are wonderful. It is like re- setting a computer – shutdown and reboot and I walk out feeling more energized and balanced. It keeps your nervous system running at its optimum and in turn helps the immune system work as it should. However, the last 4 years for me have been the most challenging with having children which means sleep deprivation and next to no time to rest or to have time to myself. It is an enormous on going challenge and by far and away the hardest (but most rewarding) thing I have ever done whilst feeling so poorly. I am looking forward to purchasing your I quit sugar book soon!

    [Reply]

  • jenny

    Hi,
    I had my thyroid removed due to cancer in 1991. I am 42 years old. I have just read all the comments on the blog. I can relate to so many of the stories. The last 2 years I cleaned up my diet…this was so hard. On my bad days I crave…coke, fat and sugar/cream etc…it is hard to fight when I feel so low and have to function. I have been following this program from a lady in Canada…based on Candida diet…..If anyone interested let me know…I am too tired to write more about my journey…but I will over the next few days…Jennyxx

    [Reply]

  • petal

    Hi,

    Has any one been tested for coeliac disease. I know friends who have Hashimoto and other thyroid problems and have been diagnosed with coeliac disease. It doesn’t hurt to get it checked out.

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  • Florence

    As I said in another comment I left on this blog, I just feel the same! It’s incredible! I’ve also Hashimoto thyroidy diagnosed in December 2011 and I’m cured now by a drug that we call here in France: Levothyrox, made of hormones of substitution. Dosis of this medicine has to be adjusted according to your “state”. I’ve been given 25 g/day at the beginning and I take now 75 g of this medicine each day. Of course, this medicine makes a big difference in my daily life and it happened to me once to forget to take the pill in the morning, but believe me, it won’t happen again! Nevertheless, this medicine doesn’t solve it all. I also have bad “days” as we don’t succeed in lowering the inflammation it causes. I’m suffering a lot of water retention which is a problem of lymphs.
    My endocrinologist says that there is not a lot of options now and that I have to find my “routine”…. meaning that I should find the things that work for me. That’s what I’m constantly doing now since almost 2 years. Exercise in the morning is one option I took and my diet is now the second level which I’m working on (quit sugar is something I’ve been thinking since a few months).
    I often feel a little bit un-understood here and I’ve got the feeling people around me think that I’m always “complaining”… it’s just so unbelievable to find people facing the same! I’m so happy not to feel “alone” anymore… Thank you Sarah.

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