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…

Have your say, leave a comment.

  • Jen

    This is thee first time I have seen reference to the vert same thing that makes me question my similar symptoms (& sanity)…… What – how & why, does an adrenaline surge (usually initiated from my clocking a body part off a hard surface unintentionally & the ensuing cussing that follows) completely stop every symptom of either hyper or hypo thryroidism dead in its tracks ?? I have told doctor after doctor this happens me on occasion, & they look at me like I’ve one too many chromosomes ………..

  • Jessie

    Hang in there Mez! I am working on this for a few years now and I am so much better! Sarah has great information, and I can only say..detox, detox, detox! that has helped me so much along with balanced lifestyle, no overexercise and Standard Process adrenal support has been a great master stroke for me (on and off I use it). Just eat clean and organic, don’t put toxins on or in your body , love the fact that your body has innate wisdom and given the right stuff.(.pay attention to Sarah Wilson! ) it will heal, it can’t NOT heal. It is the grand design. Have patience and know that time will show you your healing! 🙂

  • Jessie

    Emotional and physical stress is what “did me in”. But we can get a hold of it all, and heal. It is empowering to get it all figured out and get better and actually, having “walked through the fire” you are better , stronger and more authentic to yourself, and will probably enjoy good health for the rest of your life!! Good luck in you healing which will come.

    • 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

        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.

        • Susan Smith

          When I had the internal tremor feeling, it was caused by low progesterone. Susan

  • Jessie

    I too developed a “flat affect” and lost interest in social things. That is okay. It will change and you will become more vibrant as you heal, and you WILL heal doing the right stuff. Love yourself, your precious self and following the brilliant protocols available (holistic) detox, eating clean and right etc, you will heal, it has to happen and it will. Patience, it will come.
    P.S. minerals for the brain which halls with sadness and anxiety are Min-chex and Min-tran from Standard Process..can order on Amazon..I have had need for 6 Min-Chex in the morning on arising. It’s not forever, it just balances thing beautifully in the grey cells!

  • Jessie

    Book, Healing is Possible, is a great read, by an MD in Santa Rosa, Calif., Neil Nathan. An MD who “gets” it.

  • Jimeljaner

    Sarah, just read this article after a search on thyroid and I so understand! I’ve been on the medicine seesaw for almost 6 years now for hypo and just wanted to let you know that mixing thyroxine (T4) with tertroxine (T3) is the only solution to help me feel sort of “normal”. Luckily my doctor was open to this as I believe many will not consider it. Diet plays a huge part too in feeling well and I am just about to try kicking sugar in the hope that I can better sustain my energy levels! Enjoy being 40!

  • Wendy

    Hot damn, my jaw dropped when I read about the right side thing! My tongue is often swollen and therefore scalloped… but only on the right side! I can’t even tell you how many symptoms I’ve named that my doctor says can not possibly be related to my AI thyroiditis. Symptoms which are still unexplained and I’ve accepted by now. Thank you Sarah for sharing this info. I am not alone…

  • emma

    I have many of the symptoms, had two parasites, got rid of them with lots of antiobiotics from the centre for digestive diseases in Sydney. The drugs GPs offer don’t work. I am feeling much better but still have the symptoms. Good Luck.

  • Bear

    A few years ago my thyorid went nuts fast and then by the time of my Rheumatology appointment and blood test, it went slow. They put me on a low dose of Levothyroxine and weaned me off it over a couple of years, but they did warn me once your thyroid has gone off-kilter, it could happen again. A couple of years later I asked for a check and sure enough it had slowed again. My GP says I’ll be on Levothyroxine for life now, as it’s gone slow twice it is very likely it’d go again. I don’t know if this is AI or has a name or anything. Honestly, with everything else (recently tested this whole year for Crohns, got Ehlers-Danlos type III and some unidentified connective tissue problem destroying my hands) I have barely given it much thought. Sarah – I feel like we’d be best friends if we met! I feel like we’d be using the word “snap!” repeatedly when sharing our experiences 🙂 Just bought your first book, will be buying the second. Already sugar-free (and grains, and dairy, and everything else my guts no longer tolerate) but always keen to learn and get more recipes 🙂 your friend in Bristol, Ellie (aka Bear)

  • Loz

    I was keen to see if anyone with Hashi’s has had the experience of losing weight & appetite? I was diagnosed 5 months ago, am on 100mg per day of thyroxine, but lost an unexplained 4kgs just before diagnosis, and have lost a further 1.5kg in the past 5 months. I am also not as hungry as I once was (had a massive appetite), and can sometimes forget to eat. I am also much more anxious. Am seeing my endo tomorrow, but wanted to know if anyone had suffered similar issues.

  • Sarah I was sent your website simply because of your Paleo Receipe and thought I’d have a look at your website while I was at it. Your heading auto-immune disease caught my attention and I’m so glad it did. I have ‘suffered’ with Hashimoto’s disease for 5 years. I’m still on a massive amount of Thyroxine and feel horrible. 4 years of suffering ‘clinical depression’ and I thought I was quite literally going insane, because I never feel well. I try and explain to people how I feel and they don’t get it. My son and husband have also been effected by this disease because the person I once was is no longer there and I too feel like I’m acting to be a person and I don’t really know who that person is.
    For the first time in 5 years, i feel like there is light at the end of the tunnel and that someone else ‘gets it’.
    Thank you so much for sharing your story it may just be what a lot of people need. Never once has the subject of changing my diet come up be my doctor and I’m so thankful to my friend for sending me your webpage.

  • 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

    Sarah,
    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

    Sarah,
    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!

  • 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 …

  • 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

    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”.

  • 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 breath, 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!
    Thank you – off to the bookshop!
    MJ

  • Bowb

    .

  • 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

  • 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.

  • 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!

  • 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 despair..it is apathy!!

  • 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

  • Christina Marie Snell Baldivin

    Spiraling down in a flare tonight. Frustrated with the doctor department, still , and my meds being messed with, things being out of my control and difficult, constantly feeling on trial with doctors who don’t understand what’s wrong with me. Can’t find the right doc. Just got huge bills I wasn’t expecting tonight. My whole body hurting, feeling weak and having emotional breakdowns and tried to get the kids down to bed quick because I wasn’t able to handle the stress of all that was going on. I don’t even understand what’s wrong. Just so tired of trying to solve my mystery illness. Feeling overwhelmed with everything. All I can do tonight is cry. At least the day is over and I can rest my hurting body and mind and shut out everything until it begins tomorrow again. Just looking up things online to not feel alone.

  • Is this unsupervised learning?