How to heal auto immune disease: 20 weird thyroid symptoms (for your comfort)

Posted on October 15th, 2013

I’m not sure if you caught Meghan O’Rourke’s essay What’s Wrong With Me in a recent issue of New Yorker? It shines a spotlight on what it’s like to live with autoimmune disease. Totally pervy stuff for us AI folk.

Image via

Image via Oyster magazine

I read it. I read it again. And I wept. You know that kind of weeping that is all about the sheer relief of having connected after not realising you felt so, so, so alone? Or of having recognised a part of yourself in another, of feeling the enormity of it all, and finding that this is somehow comforting. The bigness – and one’s own smallness and individual pain – is exponentially comforting. Oddly enough.

Of course, weeping is one of the 2938747 side effects of thyroid disease. And connecting with other sufferers is the most soothing respite we AI-ers can draw on. Ain’t that a fact. (As always, at this juncture, I ask anyone reding this who doesn’t have an AI to  a) read on regardless as any AI insights can be extrapolated out to the meta population’s health and b) pass this to any loved ones with an AI.)

For those of you without a New Yorker account, I’m going to a) suggest you subscribe even just to read this article and then b) outline the bits that I was compelled to underline for those of you who only like highlights. I’m good like that! I’ve added in my own experiences and observations, too.

1. It can feel like depression… but not. “I wondered if I was depressed. But I wanted to work,” writes O’Rourke. “I didn’t feel apathy, only a weird sense that my mind and my body weren’t synched.” Shit! I get this. Let’s break it down…

2. Work is OK. The rest is hard. Of all the commitments in my life, working is the only one I can deal with when my thyroid folds. But only when I can shut out (oh, I hate that this is so…) people and other “complications”. It’s two things. First, in times of desperation (like when I have to do TV or speak to a group), adrenalin will kick in and dull AI symptoms. And I get through. Adrenalin trumps AI symptoms, but longterm this equation is a recipe for disaster as adrenalin acerbates AI.

Second, while AI causes brain fog, this can actually work to shut out distractions. With extra effort (which AI sufferers are good at), a singular focus can be kept. I’ve written before how pain and “fending” can make me really present.

(PS I’m writing this post in the midst of an AI flare. I’m hurting like hell. But I’m able to focus and write and get down and dirty with you all.)

3. You feel distant from yourself…”not synched”. This is the bit where I really cried. Like, wailed. For O’Rourke’s description so, so, so neatly sums up something I’d assumed was just me being neurotic. I recognised a part of myself and the bigness – and my smallness – felt so, so, so deep. “To be sick in this way is to have the unpleasant sensation that you are impersonating yourself… When you’re sick the act of living is more act than living.“

Healthy people, as you’re painfully aware, have the luxury of forgetting that our existence depends on a cascade of precise cellular interactions. Not you. 

Oh, indeed. In an AI fug, I feel like I’m both hyperaware of everything about existence, and yet so removed, like I’m in one of those dreams where you’re trying to run through quicksand.

4. The fatigue is unique. AI fatigue is different from a sleep-deprived person’s exhaustion. “The worst part of my fatigue, the one I couldn’t explain to anyone was the loss of an intact sense of self,” O’Rourke writes.

For me, it feels like a completely “alert vagueness”. Like you’re propped up on caffeine after 48 hours of no sleep. Ratty. Distant but hyperaware.

5. Flow is not possible. The fug, the fog, the pain, the…disconnect and hyperawareness makes it impossible. “Normally, absorption in a task – an immersive flow – can lead you to forget that you feel sick, but my fatigue made such a state impossible. “ Again, running through quicksand…it renders effortlessness forever tantalisingly out of reach. You never get traction. You’re always reaching. Just trying to get to stable ground from which you can take a certain, solid step forward.

6. Bruises are a thyroid thing.  “I had nosebleeds and large bruises up and down my legs.” I get the bruises. Not the nosebleeds.

7.  Itching sensations. I don’t get these. O’Rourke’s feel like needles in her back. But I do get…

8.  An unbearable swollen and burning sensation. Mostly on my right side.

The right side seems to be a thyroid thing.

These leave my veins bulging and my skin raw. And phantom nerve twitches on my right side.  As well as…

9. Weird non-growing bits. My toenails don’t grow at all (like 1mm a year), but my fingernails do. Sometimes. All of which are not “typical” thyroid symptoms. Which brings both  O’Rourke and me to conclude…

10. There are no typical thyroid symptoms. Helpful to know? I’m not sure.

To break down point #5 further, sadly…

11. Contact with people hurts. Humans really are too much for me when I’m not good. Why? I don’t know. It’s the accountability, I think. I don’t want to explain myself. I can’t. How can I?

I don’t want to connect, because there’s nothing in my tank with which to provide the social spark.

12. Thyroid drugs can make you worse. O’Rourke gets told to take less medication as the endo seems to think she’s swung to hyperactive from hypoactive thyroiditis. My endo has told me the same. O’Rourke however feels she needs more. And takes more. Does anyone know what’s going on?!

13. Your thyroid hormones can be whacked, but your antibodies normal. And vice versa. Both O’Rourke and I have the former bloods. Which make no sense to the endos.

14. “The nature of AI is to attack in cycles, to ‘flare’”. Oh, yes! Ain’t this the truth. It’s not a linear story, where you get sick, you get worse, then you get better. Done. Nope, it goes in ebbs and flows and flares. The sooner we accept this, the better.

15. AI understanding is “shadowy”. No one knows what’s going on. No doctor knows what they’re on about. “In fact, AI is as much of a medical frontier today as syphilis or tuberculosis was in the nineteenth century”.

16. Cinnamon helps. It stabilises blood sugar. Which is another symptom.

17. Dairy-free kefir (from coconut) also helps, says O’Rourke. I rate the stuff, too.

18. Paleo eating helps as well: “No gluten, no refined sugar, little dairy”. It also helps me.

19. It’s a young chick thing: AI is the leading cause of illness in young women.

20. Finding help takes five years. And an average of five doctors, according to the American Autoimmune Related Disease Association. Shit! I’m not alone!!!

OK. That’s enough for now. I’m going to follow this post up next week with some thoughts on the cure to these crazy symptoms and quirks. Tune back in…Meantime, share your crazy symptoms below. Because recognising ourselves in others does help…

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  • Alexx Stuart

    welcome Rani!


  • Agreed!

    This is me! I had graves @ 19 and Healed from that, but something has been off with me since. A swollen clicking grating feeling in my right shoulder & tense feeling in my neck that renders me unable to move sometimes. The mental fog and fatigue, always the g. Inability to focus, frantic 1am cleaning sessions. Terrible sleep, unexplained bruises, that fatigue feeling even after a good nights sleep. Not being able to face people AT ALL some days, missed appointments because of that sinking feeling. A general sluggish feeling, inability to shift weight to matter how well I eat and how well I work out. Weight literally doesn’t budge a bit for all my efforts. Can’t cope with caffeine, a million thoughts but can’t keep them or get them linear. Constantly reaching but never quite getting anywhere.

    Where does one get diagnosed, I have had bloodwork done at the gp who says everything is fine, but come on, something’s gotta be up with me.

    I read your blog with interest, Sarah & it all makes so much sense to me.

    Help guys?


  • adina

    I finally don’t think I am crazy after reading this. I have been suffering from Hast since 07 since then I have had three tumors. One was removed, one disappeared after changing my life style and now I have my third trying to get rid of it like I did before. Now two of them grew while I was pregnant and I dont know if having a baby has something to do with Hash. I sometimes wonder if I had PPD but now after reading this article I know it is my Hash. Thanks for the info and all that you do.


  • Anon

    Thanks, yes I really should.


  • Agreed!

    Thanks guys :) really appreciate it!


  • Zoe

    Saw this post on your facebook page Alexx… I just skipped over it but then thought I’d have a read today. “To be sick in this way is to have the unpleasant sensation that you are impersonating yourself… When you’re sick the act of living is more act than living.“ This really struck a chord with me. I went through a period of time at the start of the year that was exactly like this. On the outside I was happy normal me. On the inside I couldn’t stand people, I didn’t know who I was, I had no ‘true’ feelings towards anyone or thing. I eventually broke down to my boyfriend about how I was feeling and from there threw myself into the healthy lifestyle journey I am on at the moment. I never went to any doctors and thought more into it other than that it was a tough period of time and I’m better now. I figured it had been brought on by having bought a house for the first time, settled into doing my own shopping, cooking, house cleaning etc whilst trying to get used to living with my bf and share these responsibilities and gotten a new puppy all in 6 mths… So now I’m wondering if there is more to what I was feeling?? I suppose I am a little worried now as I want to leave that time behind me as it was quite horrible….


    Alexx Stuart Reply:

    that’s why it’s so important to share this stuff and each other’s experiences x


  • Loz

    Elle, thank The Lord for your comment. I was diagnosed with Hashimoto’s today, 10 months after the birth of my first baby. I have been very fatigued, a bit low, have had some unexplained weight loss and have been sick quite a bit but I thought it was just part and parcel of being a new Mum. I’ve been terrified reading these threads that the meds I’ve been prescribed won’t work, that I’ll get worse, and I’ll never have another baby. You’ve made me feel so much better already.


  • Tara A

    I have just literally sent a text message to my husband telling him I’m feeling weird – disconnected. Not good when you have a one year old toddler to take care of. I’ve been experiencing pain in my right ankle which my doctor thinks might be arthritis I’m yet to get some tests done and the past 3 months I’ve had skin problems, thickening of skin in areas, raw red itchy that just won’t heal on my face and in the last year I’ve been advised I have an SVT (Supra ventricular tachycardia) I’ve battled for years with what has been diagnosed as depression but I hate the way the drugs make me feel. I can get extreme fog and I prefer to not deal with the public which I fear is really holding me back. Reading these posts I’m wondering if this is all related? How do I go about a diagnosis? Is it a simple blood test?


  • Tara A

    I should also add that I had gestational diabetes and was tested after the birth of my baby and it had cleared although I’m unsure of those results as I was taking fenugreek to help with milk supply and I also breastfed my baby during the test and I now know that these two things can reduce sugar levels.


  • Jess

    Catalyst 8pm tonight, on ABC
    Part 1 of a 2 part investigation into saturated fat.


  • Kay_el_emm

    Hi Kelly, will give that a try, thanks :) I already have acu for other reasons so might as well throw this into the mix! Cheers for feedback, much appreciated


  • Jasmine

    I was diagnosed with Hashimotos when I was 20 (I am now 25), but showed signs years prior to the diagnosis. I also have Prenicious Anaemia and Mixed Connective Tissue Disease with some signs of future Lupus. Fun. My symptoms are too extensive to list. I do get extreme joint inflammation (no surprise there), anxiety, the depression you wrote about that isnt quite like depression, my hair did fall out really bad at one point (I lost about half of my hair, but it’s growing back yay!), foggy head, tingleing in my fingertips, disturbed vision (sometimes looks like there are little tiny baby fireflies in the side of my vision. So bizarre).

    Lately though I have had anxiety and panic attacks pretty bad, to the point where I don’t want to leave the house. I said no to go to coffee tonight with a friend because I wasn’t up for it. I feel so guilty and shitty. I have had a lot of stuff happen lately with financial worries for not only myself, but my parents because my mum had advanced arthritis and can’t go back to work, and I feel like im losing my best friend don’t know how to get her back. I also can’t lose weight for the life of me. The past week I have stopped trying and regret it. I do see a amazing doctor in Bondi Junction and she has me on the right track and I am able to do so much more since I started seeing her in May 2012.

    I don’t know why im saying this. I just read this and can’t seem to stop winging. I’ll probably regret it in the morning lol

    I hope you’re all well x


  • Jasmine

    Dr Lyn Tendek. She’s at Bondi Junction Medical Practice in the Westfields. She really knows her stuff.


  • Marlies

    yes please!


  • Genevieve

    Hi there Sarah!

    Your advice to stay warm might be right on the money. I stumbled upon this fascinating discussion that sprung from a negative Amazon book review (of all things), but is definitely worth a read.

    Apologies for the massive link!


    Genevieve Reply:

    OMGoodness I’m replying to my own reply! Just wanted to say that anyone reading the above Amazon discussion will need to persist through the first few snooty comments – it gets interesting thereafter (a fascinating meeting of mostly two minds and lots of food for thought for people with Hashi’s). I’ve gone on to research their contributions further and still in this process – but there’s definitely some striking logic in this discussion that simply cannot be ignored.


  • Zoey

    I am so glad to have read your article Sarah, and all the following comments.
    For the last 2 years I have been suffering from a slow onslaught of a lot of these symptoms mentioned. I was diagnosed with Polycystic Ovarian Syndrome a few years ago (at age 22), along with my already known allergies to wheat, casein, soy .. and now sugar. I gained almost 20kgs in roughly 6 months, I ate no wheat or dairy and no refined sugars with very minimal fruit and was exercising hard about 1.5-2 hours a day with absolutely NO results. My doctor advised me to go back on to the pill, knowing this only masks the cystic pain and symptoms, I was pretty desperate to stop the debilitating pain with my period and try to lose this horrible weight. For a little while it managed to level my hormones and I was able to lose a little weight and stop most of the pain.

    Through diet and natural supplementation (and sadly the pill), I have managed to keep PCOS at bay… Until about 6 months ago, and some new symptoms have now started.
    I have been so incredibly fatigued, it hits around 3pm everyday and I cannot hold my head, let alone by body up. I have gained weight again that I cannot lose (I have almost completely cut fructose out of my diet, along with no wheat, dairy, soy, processed foods etc. and exercise daily). I suffer badly from fluid retention, and have just been feeling SO heavy lately – this comes and goes, as does some joint pain.
    I am studying Nutritional Medicine as well as Sclerology, and am really struggling. Information does not seem to sink in.. I can read a page and get to the end of it, not remembering anything – even after taking notes!!!!! To say my head has been foggy is an understatement, I am forgetting words, even the names of places I have lived!!! This has been worrying as I have always been really sharp with memory and vocab!!!
    I have been dealing with these unusual feelings of depression, but not depression.. something else, a distant sadness and constant ‘down’ feeling – with NOTHING to feel ‘down’ about!!! Which makes it worse, as I beat myself up for feeling sorry for myself for no reason. I just feel like running away and hiding in a dark place where no one can find me! Which is so unlike me, I have always been so happy and positive and sociable!

    I have an incredibly hot body temperature, always.. I sweat even when I am shivering with goosebumps. It is so embarrassing.. and I have to choose my clothing material and colours wisely each morning, picking those that will disguise the sweat marks as much as possible. It constantly drips from my armpits, I sweat under my breasts, down my back, behind my knees – and the best one … in my GROIN!!!! This summer is going to be horrible!!!! I also have these fungal like peeling spots on my skin under my armpits and breasts (where my bra runs), I have been told it is not candida and I would be inclined to think not as I don’t really ingest anything to feed it. Because it is only local to this area, which is ALWAYS wet from my sweat, I am thinking maybe it is something external due to my sweating?
    I have had a constant “lump” in my throat, some days it feels bigger than others.. so much so that it is sometimes uncomfortable laying down. I have been to GP’s and they seem fairly unphased, she had a feel of my throat/thyroid and said it ‘felt’ normal.
    I have recently come off the pill, so am waiting a little bit until my hormones settle to their ‘normal’ levels before I go for my blood work and thyroid testing. But now the PCOS is flaring, my first period (sorry if this is TMI) had me awake and squirming all night, after eventually literally crawling out of bed to try and find some painkillers and my wheat bag, I was in so much pain I started dry reaching and almost passed out. They only gave verrrry minimal relief, but it was better than nothing. I just struggled through to the next day, and was afraid to stand or move as to avoid aggravation. No I am having constant daily dull pains in my ovaries .. Hmmphh.

    I only recently found out that my Grandma (mum’s mum) has Hashimotos, and had a tumour removed in her late 20’s (along with her thyroid I think), which has all since grown back. The Dr’s are monitoring her, but as a woman from her era she will not part with any updates, especially anything bad because she doesn’t want anyone to worry about it. She also has a thyroid disorder, as well as PCOS – which my mum and two more of her sisters have unfortunately suffered (just the PCOS). I now know that endo issues are clearly a very big weakness in my mums family.
    Since finding out about my Grandma, I have been trying to do some research into why I have been having these symptoms.. I just want an answer. No doctors seem to have any clue, and as soon as their standard ‘tests’ come back within range they just tell me they don’t know what it is and basically wipe their hands of me? It is so frustrating and EXPENSIVE!!!

    I have recently been taking 4 drops of Iodine each morning, along with Tyrosine for pituitary support. Has anyone else tried this for Thyroid disorders? Any negative / positive feedback? I am still a little skeptical, as I know there is a very fine line between therapeutic and toxic dosage. I definitely don’t want to take medication if I can help it.

    Anyway.. I just wanted to share what I was feeling as it is good to be able to get this off my chest and possibly be understood, in a sh!tty way it is nice to know I am not the only one wondering what the cause of these problems are, and whether it is just all in my head.
    I would appreciate any feedback anyone may have, it is always nice to hear things that have helped others!! :)



    Rachel Reply:

    Hi Zoey,

    I just wanted to say hi and acknowledge your post because i’m sure it would have been a big thing to share all of your symptoms on here.

    I’m in the middle of a Hypothyroid flare up. My symptoms are nowhere near as extreme as what you’ve mentioned above (particularly when you described the physical pain you’ve been going through) but i can definitely relate to a few of the things you’ve said.

    I’m only 27 and in the last 8 years since i’ve been sick i’ve had to deal with stubborn weight gain, fluid retention, brain fog, fatigue, abnormal body temperatures, and shelling out thousands of dollars for what feels like no reason trying desperately to find anything that will make me feel better. Funnily enough today i was out clothes shopping i found myself immediately passing over a number of items i actually liked purely based on the fact they would show sweat patches (black singlets and tops are my staples!). Until you mentioned it in your comment i never really processed that it was yet another side effect that most ‘normal’ people probably don’t have to deal with.

    I’ve learnt to cop it on the chin for the most part but i would be lying if i said i didn’t have resentful moments where i do think about the effects that all of those symptoms have had on my self-esteem and in turn my confidence and social life in my early 20’s.

    I’m in Melbourne at for the last 12 months i’ve been seeing a Naturopath based in Fairfield. She’s the first person to address the Adrenal side of things and to see my thyroid issues as a symptom of other things that need to be addressed, not just a single issue that can be fixed with a tablet. It hasn’t been a quick fix (or a cheap one) but it’s been the only thing that’s made me feel i’ve started to make progress. If you haven’t already tried, maybe a Naturopath might be worth considering?

    Unfortunately i don’t really have any advice for you in the scheme of things but i just wanted to say thanks for sharing your story. Hopefully just knowing there are others experiencing similar things helps a little.

    Rachel :)


  • Simone

    Oh my god.. In the past year, I’ve been through 3 GPs, a gyno and a Naturopath. The naturopath has been the only one even close to helping me out, the gyno actually gave me a script to get back on to the pill to help my endometriosis which nearly made me cry, I feel like since getting off the pill these problems all began!!

    I’ve had all the blood tests but none have come back with anything irregular. I actually started to think it was all in my head until now. I have just come back from 3 weeks holiday in the US and feel like I’m in a flare up at the moment.. before I left I felt like I was on the mends, I lost a bit of weight, my energy was back, my diet was perfect and after america, my throat is so sore, my entire body is swollen, I’ve put on at least 3kg and I feel like I lost half a head of hair while I was over there – it seriously just kept falling out!!! Even though I tried to stick to a paleo diet over there it was hard to get exercise in and it was hard not to drink and enjoy the pleasurable foods of America but now I am paying the price… it’s nice to read this blog and the comments to know I’m not alone.. I share most, if not all of the symptoms yet no tests I take prove this!

    If anyone has any recommendations of who to see in Sydney it would be appreciated

    – The frustrated thyroid x


  • Lea

    I got so carried away I forgot my own question – do you think, or have you heard of, sufferers of coeliac disease experiencing similar symptoms? I understand that in a few months, after eliminating gluten, I will begin to feel improvement but I’m nervous that I haven’t yet felt any change. In fact, I have even less energy and the depressive/anxious moods are there in full force.


  • Miranda

    I first read this article a week ago and again every day or so since then each time producing the same result, tears, relief, more tears and a sense of not being alone. Of not going mad.
    I can relate so much to the symptoms both you and O’Rourke describe much like they pages from my own diary. The overwhelming fatigue that is beyond any kind of normal tired, where simply existing is a struggle, the feeling of being out of sync and of a fog or depression of sorts that isn’t quite depression. For me it’s not work but the gym which I can always push through and do even if it leaves me spent for the rest of the day. Because of this my family and doctor don’t seem to take it seriously. They tell me I am simply doing too much. But if it was that simple every one who did my class at the gym would be feeling the same.
    I have struggled with this for about eight months and feel excited that I might finally have an answer that shows it isn’t just all in my head.
    What would be your advice in telling the doctor and asking for tests or something that might help with a diagnosis?
    Much love to you,
    Miranda x


  • Amanda

    I have hypothyroid, unwell with it for the last 9 years. Having two babies over the course of the disease has been difficult. I am now on 250mcgs of thyroxine daily and have been for nearly 3 years. My bloods have only just normalised. I hate myself some days (most days really). My short fuse, intolerance towards my babies and husband. I work shift work which only adds to my problems. I am always tired. I also have Raynauds which I suffer from terribly in the cold months.
    It is reassuring to read that my symptoms are a result of the disease. I constantly think of myself as a bad mother and bad wife.


  • Megan

    Thank you sarah for the great post!!! I, too, have Hashi’s amonth other AIs and really resonate with your (and Meghan’s) writing. You are SO correct that the symptoms vary widely and are often hard to explain (like that certain kind of fatigue….)
    Thank you for sharing & shining light on the subject xoxo


  • kelly

    I LOVE the way you right. Raw, unapologetic, unambiguous. Thank you!


  • M.J.

    Wow, this article brought tears to my eyes, as did the article in The New Yorker. I hadn’t even realized some of the symptoms I’ve dealt with, until reading the definitively accurate descriptions!!!!
    I have had Hashimoto’s for most of my life, and still on the road to recovery. Fibromyalgia, depression, anxiety, heart palpitations…. The list goes on. If only it were physical symptoms, but mental ones join the party too. This article made me feel a little less alone in the world of Hypothyroidism. Thank you!


  • Amanda

    I am re-reading this all over again. I have suffered with this for a long time and feel like i do a lot right, but just not breaking through. I have booked in for a meditation course. Im stuck. Doctors, natropaths, no one seems to know what do do. I have cried so much the last few days. You feel like you loose hope occasionally of ever making it through. What is it like to feel AMAZING! full of energy, life and vibrancy? I sit here in my office disconected to my mind and body, to the world and to my work. I feel like going to bed, but I cant! life goes on and so will I. We will get there, we will keep fighting. We will find answers. Thank you Sarah for your vulnerability and being able to speak to freely and honestly about it. xx


  • Allison Ryan

    I am in the process of asking the many questions about why I am not ‘well’. I have so many random symptoms that have not fit into a box as yet. The doctors (3 so far) have told me I must be depressed – prescribe antidepressants… I just went back to another doctor today. But I don’t feel depressed, I don’t feel well! I am so frustrated!!! I broke down reading this article as I felt like I was reading my own diary, the tears are still rolling down my face as I write this. I feel broken, alone and no one has been able to help me.


  • Trisha

    I was diagnosed with Hashimoto’s today; I cried, but with relief. It has been YEARS of feeling “off”, horrible fatigue, pain, brain fog, hair loss… You know the symptoms! I have been on the internet for hours, gleaning any info I can about this. I am grateful my sugars are normal, as my cholesteral levels are. I now know I’ve been suffering for years with this; 6 miscarriages, hysterectomy due to HORRENDOUS periods, etc.etc. etc. I’m sorry to spill all this out, but to find someone who gets it, who knows without having to explain it, well, it’s priceless.
    I found your blog by accident. Thank God for accidents! Reading the 20 Weird Thyroid Symptoms made me wanna cry (more); I swear you were describing me! I cannot agree with #20; it has taken me almost 10 years to get a diagnosis. I now understand why (cycling), but I think 5 years is a conservative number.
    Thank you for sharing your journey; I don’t feel so alone now.


  • Amie F

    I was guided to your blog by a very dear friend of mine who follows you. I am forever thankful. I’m anxiously awaiting your I Quit Sugar book, I ordered it recently (I’m in Canada). I was diagnosed with Hashimotos at age 24 and I am now 33 with a goiter, PCOS and Rhuematoid Arthritis as well. I have two small children (1 and 3) and my RA flare and diagnosis came up just a few months ago as I was running after my children and preparing to return to work from maternity leave (a very stressful time). Stress is most definitely a trigger for me.
    I’ve experimented with gluten free and found it was helpful (very much so…since surprise I got pregnant…hence the 1 year old.) :)
    I am gearing up to cut back and quit sugar and sure hope this helps. The above post was really touching for me as well, especially the part about being depressed, but not, and disconnected from myself. People really are a lot of work. I’m happy to know I’m not alone!

    Thank you thank you thank you for sharing!


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  • Joanne Mary

    i didn’t realise crying can be part of this condition. i have suffered depression anxiety for most of my life. been diagnosed with chronic fatigue syndrome. and now have just discovered i have hashimoto’s . i feel so unwell and so fatgued and anxious and i can’t stop crying… i cry at the drop of a hat!!! i have been off sugar and wheat (thanks to your book and christine cronau’s help too) for over a year now. and yes have seen a 20kg weight loss and been able to come off blood pressure meds and heartburn meds but i stil feel so unwell.. i seemed to improve for a while but feel like i have gone back 100 steps …


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  • Skye

    I can relate to so much you have said. Going through an awful “flare” now, but no specific test results to identify exactly why my system is doing strange immune type things, can’t seem to get to a correct MD who knows (or cares) what to do. When your general blood panel tests aren’t showing abnormalities, I have found MD’s laugh you off, dismiss you and try to pass you on to someone else to get rid of you. I have rheumatology appointment, but not for 3 more months (how great is that). It adds to the fear, stress, and you almost feel guilty for being sick and it makes you feel “crazy” because it hasn’t been identified. I have had 3 “flares” almost at 10 year intervals. It started after the birth of a child which I read a lot of times kicks off auto-immune issues. I keep praying that science will progress to help heal us. Prayers for all of you who are suffering with these horrible illnesses.


  • Skye

    I also went over the cliff of stress with my present “flare”, but I am in it alone. My family gets pissed off if I mention any illness issues. At my house everyone is supposed to keep a happy mask on at all times, not deal with problems, just pretend they don’t exist. My husband has gotten quite hateful to me, but I think, he is feeling very stressed out by my not thriving and this continuing on for months. It is frustrating when you have no one to talk to and people make you feel guilty that your body is flipping out. Actually, I think that has a lot to do with why it isn’t improving, no outlet, just bottled up feelings all around. Lucky if you guys have people to talk things out with.


    paula Reply:

    I know exactly how you feel, when you say you are not allowed to mention feeling unwelkl. I have that from my husband and my 3 grown up kids. I feel isolated in this illness which I have had for 2 years. My doctors are useless. My head gets so sore and red with it and my hormones are out of balance. I wonder if I will ever feel well again. I go from freezing cold to warm in the evening. I wake up every morning with an internal tremor, vibration which really scares me as I feel I am running at a 100m miles an hour. It gradually wears off, but what is causing this every morning. I have lost weight in my neck, arms and legs. I am sure it is due to high cortisol levels when I wake up, just like I have been doing a workout. I have been told I have very very low DHEA.


  • Skye

    Exactly! Once you tell MD’s there is an anxiety component (like who wouldn’t feel anxiety when you keep having weird body issues and can’t get to the bottom of it), they latch onto the anxiety as a catch all, not understanding that it is “normal” to have anxiety in your situation or that you can actually have anxiety plus other issues. Why can’t MD’s get that? I think it’s their laziness to not have to look any further. I have to work hard to “stay in the moment” while ill, so my brain doesn’t keep trying to figure out my own diagnosis. Anxiety is a physical manifestation which can have an underlying illness attached. Those of us who suffer it, know how real and debilitating it is, but it certainly doesn’t limit us to not having other illnesses along with it (which exacerbates the anxiety thing). MD’s should know that. You are not alone. Hope you are better now.


  • Skye

    What type of MD figured things out for you? The regular GP I went to blew me off when my general blood tests showed “normal”.


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  • Paula

    oh my goodness, that is what I get, my body racing so fast and if it is centered at the back of my neck. It also races in my jaw and limbs, it feels like a car engine running too fast. Every morning it wakes me up, 7 days a week. I am always cold in the day, my face is freezing, but warms up in the evening. I hate this vibration and it scares me. Have had it for 2 years. I also have very very dry skin and keratosis on my body which developed after a ct scan. My scalp also burns everyday since having this. I have been depressed and anxious and menopausal. I am on bio-identical hormones and went privately to see a doctor who specialises in this in London. I was tested for various things and was told my adrenals were exhausted.I am wondering if I have high cortisol levels and that is causing the vibrations. My temp on waking is only 35.9. and my pulse is racing. I am so tired of it all. My doctors say my thyroid is within the normal levels and that is what they go on, even though my other symptoms are classic of thyroid imbalance. I did lose weight and had a gastroscopy which showed I had gastritis and gerd. I was off work for a year with back problems, but I am back now which is good for me as it keeps me focused. It is very strange reading others comments as I too can cope with work but don’t want to talk to any of my friends and family. I have to make myself be sociable with my family which is very strange for me as I love them to bits. So why do I prefer to be at work? I can’t understand what is going on with me? I hope these hormones help, the only thing is it started abit of post menopausal bleeding and I have had to have a biopsy, but the lady at the clinic said this can sometimes happen and they will adjust my dose. So I probably didn’t need the biopsy. I lost my best friend my mum 5 years ago and my dad this year which has been hard for me. Also my husband has MS which has been hard to cope with. I have had so many strange symptoms and feel unwell most of the time. I am out of balance and have seen different doctors, chinese medical doctor, herbalist, etc., but as of yet no-one has come up with anything. My liver enzymes were slightly elevated, but this was because of tablets my doctor had me on which didn’t agree with me. I also have some small gallstones. I am not overweight at all and do not eat fatty foods. I still think all these things came on since the high dose of radiation, because before that my scan showed a perfectly normal body. I feel for everyone out there who has no support from their doctor, because doctors only believe in giving out pills, not finding the root cause, and say “oh its your age, or its in your mind. I find this patronising and ignorant. My hair also started to get thin after being very thick. One of your readers said they had iodine radioactivesubstance to drink and that affected their thyroid. Why don’t doctors ever come on these sites and read what is going on and educate their brains. Over the last 2 years I have been amazed at their lack of knowledge and caring. I am sure if it was one of their family it would be a different story!


  • Bernadine Young

    Hi Sarah, I have hypothy, and Hashimoto’s AND hypoPARAthyroidism too. It all come on over past decade following a major accident. I believe that transfusions and hospital staff infection I got are the reason for it, which was the one or two good pieces of advice I got from my neuphrologist (the specialist that works with kidney transplant patients and diabetic’s kidney problems, which I don’t have and hope not to get!). YOU, DEAR Heart, are the first I have found who goes beyond drs. pitiful ignorance about how serious this is (they are waiting until I burn out my kidneys). Fortunately, I am an extremely healthy person going into this disease and have hopes I will hill, but of course underlying food sensitivities and toxins are holding me back, thus my search for information. What prompted me to write you is when you mentioned the burning and terrible itching — the other good piece of advice was that the itching especially on back and legs is sign of hypoparathyroidism, which for me is a life threatening problem as I have way too much phosphorus in my urine which took years to accidentally discover, so now I eat a very low phosphate and low oxalate diet, both of which are hard to manage with the thyroid issue, as the diet are opposite — I can eat circiferus veggies for the pharathyroid, which have saved my life, and I found that cooking them and having them also with lots of sauted spanish onion that they do not bother my thyroid. I would love to talk further with you if there is a way. Over the past year and a half since being diagnosed, I have figured out a lot of things, but of course there are wholes and I know less about the thyroid than parathroids. Best wishes, Bernadine


  • Carrie

    I came here fro the search ‘hashimoto’s and feeling overwhelmed’. I just don’t feel like myself anymore, but a walking cardboard stand-up version of myself, frozen in some glossy wave, trying to be ‘normal’ when I have forgotten what that feels like at all. Thank you for this. I am not alone.


  • MJ

    Dear Sarah,

    I’ve finally ventured onto your site. Not because I’ve not wanted to but cause I’ve been a little scared. Your book has crossed my path many times too – but again not gone there. I was diagnosed with Hashimoto’s a few years ago.

    I have just read ‘How to heal auto immune disease: 20 weird thyroid symptoms’ on this blog and have been sitting here with tears streaming down my face.

    The lack of sleep has come to an all-time high, the anxiety, the fogginess. I’m aging before my eyes. The feelings of not synched, the fatigue (feeling like u r the only one not able to cope with life), and ‘Work is OK. The rest is hard’ – this is me – how can I afford to ignore this any longer.

    No wonder I feel like when I try to rest my body is literally contorting – holding my breathe, jaw clenching. Yes, my body produces antibodies against my thyroid but the sugar is actually causing my body to fight against itself.

    Wish me luck – I want to start really living!
    Thanks you – off to the bookshop!


  • Bowb

    Thank you for putting this information out there. The fact is there are a LOT of people with issues like these who are falling through the cracks of our healthcare system.

    Lack of iodine is known to be a cause of hypothyroidism and Australia has some of the most iodine-deficient soils in the world. Food Standards Australia has said that mild iodine deficiency is common in south-east Australia.

    There are loads of females who present to their GP with the symptoms above and are told they are depressed, lacking in iron, and/or they need to exercise more and lose weight. The underlying problems are just never discovered.

    Personally I suspect that thyroid issues are one of the most under diagnosed conditions in Australia.


  • Sophie K

    WOW this resonated with me on so many levels… the struggle is so real.. bloods tomorrow again for me :(


  • Maggi White

    Thank you Sarah, this article has helped me realise that symptoms are not me.
    I also get crippling feelings of guilt that I cannot explain, does anyone else?


  • papa

    As a man with recently diagnosed Hashimotos (4 years now) I can relate to so many of the odd things a thyroid condition does to a person and the adjusting and time it takes to level out. Interesting to hear you mention the diconnect and distanced feel you have and how the condition oddly affects your mood and the way you perceive and feel things. Even the way I think is different, I think my character has changed and that saddens me because I’ve lost a lot of my zest for life. I’m having to learn after 48 years who I am. And I’m not half as lively and ambitious as the person I once was. Thanks for your well written piece. Paul. From the UK


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  • Nicoleeo

    I am sitting at work, and I start wondering again, “Why do I feel like crap, ALL. OF. THE, TIME..,…? And then, it dawned on me that I have had thyroid radiation treatment like 8 years ago, and maybe, just maybe, that would have something to do with this,….Everything you wrote in this article is so so so spot on for me. Everything. I for the first time in a very long time just a wee bit hopeful that within this realization lies the solution. I would give anything to feel like me again. Almost.


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  • Fidan Bakirova

    Marlies, could you share your experience more here? We could also discuss it on facebook and I would like to ask some more questions on your treatment as my symptoms are similar to yours and have difficulty with finding proper treatment.


  • Sara Kaplan

    Sarah….I CANNOT THANK YOU ENOUGH for writing this article. You MAY have just saved my life. I have been at my wit’s end these past few months. I quit my job at Home Depot (working there to make ends meet), been doing pretty much nothing because that’s all I COULD do.

    I suffer from ITP (Idiopathic Thrombocytopenia Purura), a blood disorder, and Hypoparathyroidism. Both of these are under significant control from how they were when they were untreated—yet I don’t currently have an Endocrinologist. I thought I might be having reoccurring Lyme symptoms; I grew up with untreated Lyme Disease from age 2 until I was 13. I have a feeling that the untreated Lyme really messed up my Thyroid. (Sadly they didn’t know enough about Lyme back then to be able to spot it. We finally found a doctor that specialized in Lyme disease, Dr. Corsaro of Mt. Kisco, NY, and if it weren’t for him, I might not be alive today.)

    I take calcium for the Hypoparathyroidism, but nothing for the ITP except iron on a daily basis.

    However, even with everything I’ve been doing to make sure this stuff is under control, the last few months have been pure hell. (If it wasn’t for my husband and my parents and my kitties and good and caring friends, I don’t know how I would have made it through.)

    Symptoms? Oh yeah I’ve got plenty: head fog, lethargy, depression, anxiety, migrating joint pain, migraine headaches almost every other day, and now, I just started getting susceptible, for some reason, to allergic reactions with things I normally wouldn’t have allergic reactions to (like a stronger reaction to simply the smell of onions, and, like today, using Aloe Vera).

    My husband happened to find this website because I mentioned the onion thing and the aloe vera thing together. And after reading this article of yours—-for both of us—it just clicked.

    I’m going to really cut down on dairy, carbs and sugar. I have to thank you for having the courage to write all this out. It’s people like you that are the real heroes in today’s world. Something as seemingly small as writing about your own experience might just be that eye-opening thing that will help another in the most wonderful of ways. Never before has a blog post made me cry with gratitude to have found others like me! I thank you from the bottom of my heart.

    PS: I think there should be a forum for those with AI. Maybe we could all start one!

    ~Sara K.


  • Chasidy

    OMG….OMG…I am sorry that everyone else here feels the same way that I do….I had thyroid cancer in 2006 as an 18 year old. I had it removed went through all the treatments and now I struggle with being hypo and hyper…Right now I have been hyper for the last year. Started passing out…Limbs felt like stone….saw about 5 different doctors. My endo didn’t believe I was experiencing endo symptoms…My TSH was 0.011…struggling to get it back. Feel better everyone!


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  • Marg

    I too feel the emotional/physical disconnect. I have gone through four endocrinologists and at least 4 thyroid storms due to the over medication for a disease they assumed I had (Graves). The last one also assumed all my problems were due to menopause and prescribed just estrogen (and of course that hormone blocks thyroid medication). I could never get a stable dose and get rid of the dryness and muscle pain (groin are hit the hardest!!)….until one day only one day I used estrogen on the wrong dose (as I knew it would bring me out of the darkness of hyperthyroidism) and I had no pain, moisture and no swelling around my eyes and face. It has taken me almost two years to figure out the right dose and have yet to reap the rewards it will offer me. I took control…no one can look at a lab sheet and mandate what dose we require…and now I have my family Dr. on board..the ball is in my court and I intend on winning. I am not sure which is worse hypo or hyper..well yes I do actually hyper…not just is apathy!!


  • Toni | 2 Aussie Travellers

    Oh wow, how good is it when someone ‘gets’ the AI roller-coaster we’re on, I get so excited even if it’s someone I don’t actually know IRL x


  • Sambenedetto Seven

    This made me start crying. I cannot explain to my family and others how I feel, no one gets it. I have Hashimoto’s, Rheumatoid Arthritis and and perimenopausal. I feel like I am holding on to my sanity for dear life. And I just realized my shirt is on backwards and I went grocery shopping….. and I broke 3 bottles unloading groceries…..and my thyroid hurts like I was punched in the throat……thanks for at least making me feel less alone


  • Peter from Dracos

    Cant figure out why i feel weird like severe panic in my whole body. Test revealed low cortisol. Hard time letting stress go


  • Peter from Dracos

    Interesting, i went to the doctor cuz i couldn’t function with rock bottom thyroid, still i wonder if i should have stayed away or at least seen only integrative