Grief Upon Diagnosis: Uncovering Hashimoto’s Thyroiditis

January 10, 2015 in Categories: , , by

Print Friendly

Wednesday, I was diagnosed with a new autoimmune disease.  I have Hashimoto’s thyroiditis.

There is such a tremendous feeling of grief associated with a diagnosis like this.  Even though it means that I finally have answers, even though it explains everything I’ve gone through since puberty, even though it means that there’s a medication that I can take that will make me feel better, even though I am completely armed with all of the information I need to manage it and make the best health decisions, there’s a part of this that makes me feel angry and bitter, like it’s my fault, like my world will never be the same again…. I’m grieving.

patient having temper tantrum

I wrote about the emotional struggles of autoimmune disease on page 283 in The Paleo Approach.  This isn’t my first rodeo, so to speak.  It’s certainly not the first time I’ve felt the complex combination of emotions that comes with diagnosis.  But, this time, it seems bigger.  I think because I have finally identified my first autoimmune disease.

While this may be a new diagnosis, I’m certain that it’s not a new illness.  In fact, I believe that I have suffered from Hashimoto’s thyroiditis since I hit puberty at 10 years old.  In fact, I believe that Hasthimoto’s thyroiditis may be the reason why I hit puberty at 10 years old.

The autoimmune diseases that I’ve been diagnosed with before now (lichen planus, scalp psoriasis, and arthritis) are all typical secondary autoimmune diseases, meaning they usually accompany celiac disease or ulcerative colitis or Hashimoto’s thyroiditis, etc.  I’ve wondered for the last couple of years (since I started researching autoimmune disease in depth to write The Paleo Approach) if I do have an undiagnosed primary autoimmune condition.  Now I know that I do.  And it makes my last 30 years of life make a lot more sense.

I will never know for sure, but I believe being ill with mono for 6 months when I was 7 years old was the beginning.  It makes some sense since Epstein Barr infection is known to dramatically increase the risk of several autoimmune diseases, including Hashimoto’s thyroiditis.

I was teased for being chubby in elementary school, although I was just a sturdily built, tall child.  It wasn’t until early middle school that I really started gaining weight.  I always thought it was my fault.  But, when I look back at the type of kid I was, I was highly active, walking a mile and a half to and from the bus stop each day, riding my bike around the neighborhood in the evenings and for hours on the weekends, going for frequent family walks and hikes, and taking swimming lessons.  My diet growing up may not have been gluten-free or Paleo, but my mom believed in butter, our dairy was grass-fed, our eggs came from a local farm, and we ate almost entirely whole unprocessed foods, including fish we caught ourselves fresh from the ocean and vegetables we grew in our garden.  I thought that the reason why I was gaining weight, when the other kids around me weren’t, was because of the occasional ice cream sandwich purchased from the school canteen.  I thought it was because if I found a quarter on the ground, I’d use it to buy gummy bears from the 5-cent bin at the corner store on my way home.  I thought it was because I wasn’t perfect.  I never realized just how much it didn’t add up.

I didn’t know that having bowel movements 2 or 3 times per week wasn’t normal.  I didn’t know that having a heavy period that lasted 7 days wasn’t normal. My skin was always dry, so I used heavy duty moisturizers.  My scalp flaked so badly I always wore my hair up.  I didn’t know that the amount of hair in my brush and clogging the drain wasn’t normal. My nails were thin and brittle, but I bit them.  I didn’t know that how tired I felt wasn’t normal.   I was a teenager who willingly went to bed at 8pm, who slept on the school bus both to and from school, who would rather sleep than do all the bad but fun-looking stuff my friends were doing… and I had no idea that that was a symptom. I didn’t know that my moodiness and tendency toward mild depression wasn’t normal.  And heck, I was a moody, tired teenager–no one around me knew that wasn’t normal either.  I stopped growing at 10-years old, but I was 5’6″ having until then always been the tallest girl in my class, so this was never flagged as something abnormal.   It got increasingly difficult for me to participate in PE or be active as I got into my later teens.  I thought it was my weight–by that time I was certainly overweight but only borderline obese–not realizing that the muscle fatigue and joint aches could be due to something else.  I had nearly every symptom of early hypothyroidism, and I didn’t even know that I should complain about these things. Seriously, what teenager wants to tell their doctor or even their friends about galactorrhea!?!  I just assumed that’s what every girl went through…

Early SymptomsI blamed everything on my weight, and blamed myself for my weight. I developed coping strategies to deal with the other symptoms.  I learned to push through fatigue, and work hard despite it.  I started drinking coffee daily at 14 years old.  And once I had income from babysitting and eventually a part-time job, I started keeping myself awake in the evenings to get my homework done with popcorn and m&m’s.  I went on many diets throughout my teen years and they never worked, which left me feeling defeated, feeling that it didn’t matter what I ate, which eventually evolved into binge eating disorder.

In my late teens and early twenties, birth control exaggerated all of my symptoms.  My chronic constipation was so bad that I underwent a series of uncomfortable diagnostic tests that eventually led to the label of Irritable Bowel Syndrome. In grad school, my doctor told me I probably had hypothyroidism when I complained about weight gain, fatigue and depression after a major health crisis.  I remember sitting in my landlady’s office and telling her about how every symptom of the disease matched what I was experiencing. But the tests (TSH and T4) came back normal (albeit just barely) and my doctor never pursued it further.  This was also the time that I developed my secondary autoimmune disease, lichen planus (read more about this part of my journey here and here), severe acid reflux, asthma, and allergies.

As a postdoctoral research fellow, I again went to the doctor complaining of weight gain and fatigue.  My T4 was just bellow the normal range and my TSH was normal, so my doctor told me “we’ll watch it”, which we didn’t. This is when I was diagnosed with early arthritis and scalp psoriasis.  This is when I started having tendonitis, and numbness in my fingers diagnosed as probable carpal tunnel.   I had much more severe depression, and anxiety attacks.  I had frequent migraines.  I was clumsy.  I did nothing but work and sleep and eat. This was when I was my heaviest, close to 300 pounds.

Later symptomsWhat brought me to Paleo was the fact that even though I was successfully losing weight on a low-carb diet, I was getting sicker and sicker.  When I first went Paleo, my energy sky rocketed, my digestion normalized, my asthma and allergies diminished, my acid reflux went away, my aches and pains went away, and things started coming together for the first time in a long time.  When I went AIP, my skin cleared and I reached my lowest weight ever as an adult.

Even while Paleo, I had coping strategies.  I discovered that using Morrocco Methods International haircare products help my scalp not to flake and my hair to be thick and healthy.  I started using Primal Life Organics and Tallow Balm for my skin.  I continued to rely on caffeine, and even when I gave up coffee for 15 months, I continued to drink 2 or 3 pots of black tea a day.  Yes, pots.  And I slept 9-10 hours per day.  I used a Squatty Potty and took Magnesium Glycinate which was sufficient to deal with the chronic constipation.  I found solutions for what seemed like isolated issues, nothing worth mentioning to a doctor, nothing worth complaining about.

And then I agreed to write a book, which became two books.  If I ever needed reinforcement of the importance of lifestyle in managing autoimmune disease, the health crash I suffered a year ago was it (you would think that the act of researching and writing Chapters 3 and 6 would have been enough, smh).   I had thought that I would bounce back once The Paleo Approach went to the printers, but I didn’t.  So, I sought the amazing expertise of a local functional medicine doctor (Dr. Flowers), the first doctor to ever run a complete thyroid panel on me.  At that time, I once again suspected it was my thyroid, but, my thyroid panel came back normal (albeit just barely).

A spring and summer of going to bed early, working out, and keeping my diet clean healed my adrenals.  But as my adrenal glands started producing cortisol again, other symptoms started to manifest.  My hair started falling out in the summer.  My weight started creeping up again in the fall.  And after The Paleo View Book Tour in November, everything seemed to fall apart.  I had no energy and went from infection to infection to infection.  When I wrote my New Year’s Resolution post, I assumed that I had thrown myself back into adrenal fatigue.  But the opposite was true: the stress and lack of sleep of travel combined with now functional adrenal glands sent my cortisol skyrocketing.  The high cortisol suppressed my thyroid and finally unmasked what has probably been there all along:  Hashimoto’s thyroiditis.

I do appreciate the irony, that writing an encyclopedic tome to empower the autoimmune disease patient to recover their health, caused my own health to deteriorate to the point of adrenal burnout and autoimmune flare, which enabled me to (finally) be diagnosed with Hashimoto’s thyroiditis.   I don’t take it back though. And I don’t regret for one second writing those books or taking on any of the projects that I am now working on.

A common conversation I have at book signings is with people frustrated that they don’t yet have a diagnosis.  They know that something is wrong, they’ve undergone many tests, they feel terrible, but they don’t have a name for their disease.  A devastating statistic that I shared on page 13 in The Paleo Approach:  45% of people later diagnosed with serious autoimmune diseases are labeled as hypochondriacs in the early stages of their autoimmune diseases.  Many autoimmune diseases are impossible to diagnose until they’ve progressed to a point of severity that it’s obvious. I was not labeled as a hypochondriac, instead I was labeled as a fat person clearly doing something wrong to have gotten there.   I tell people that changing diet and lifestyle to regulate the immune system and stop the progression of their disease means they don’t let it progress to that point of severity where diagnosis is possible–and that’s a good thing.  I tell people that there’s victory in not knowing.  I don’t even know if I thought this applied to me before, but it certainly doesn’t now.  I know.  And it simultaneously feels like a failure and a huge relief.

In many ways, I feel absolved from guilt.  Being an overweight teenager was not my fault.  It was the disease.  That size 26 wedding dress wasn’t my fault.  It was the disease.   And look how strong I am.  I lost 120 pounds with undiagnosed Hashimoto’s thyroiditis!  I graduated with a PhD in medical biophysics and have become a New York Times bestselling author with Hashimoto’s thyroiditis.  I have become an inspiration and roll model for hundreds of thousands of people because I conquered a disease I didn’t even know I had.

And, in many ways, Hashimoto’s made me who I am.  Being bullied as a kid and teenager, my struggles with weight and health, the coping strategies that allow me to persevere and work my tail off despite exhaustion and pain, my desperate need for answers and my inherent nerdiness when it comes to the level of detail I want to understand everything in…. all of these things together have allowed me to become the Go To Resource for millions of people struggling with autoimmune disease and other chronic health problems (as my husband jokes “I know this great book about autoimmune disease called The Paleo Approach“, lol).  Hashi’s is in many ways the root of who I am.  I have known life with it for almost as long as I have known life, even if I didn’t know its name until Wednesday.

I am sharing all this to validate your grief.  Grief is normal.  The mixed emotions that comes with diagnosis is normal.  It’s allowed to feel big, even with all the silver linings.  And remember that there are many silver linings.

I have been grieving this diagnosis, while also realizing the strength and optimism that comes with this knowledge.  There are few people in the world who understand the intricate details of what’s happening in my body better than I do.  There are few people with more knowledge about diet and lifestyle for regulating the immune system, healing the body, and supporting thyroid function.  (And for those of you going through this too, I’ve shared all of this knowledge in The Paleo Approach.)  I know which medications to take, which supplements, which healing foods.  I know what to watch for.  The symptoms I have been suffering, even including very poor sleep quality, are already starting to subside with my new regimen.

Even though I grieve, I rejoice in finding the missing piece to my puzzle.

List of Hashimoto’s thyroiditis symptoms from http://www.nytimes.com/health/guides/disease/chronic-thyroiditis-hashimotos-disease/symptoms.html

I loved this letter from Thyroid Sexy  https://www.facebook.com/notes/thyroid-sexy/i-am-hashimotos-disease-a-letter-for-patients-family-and-friends/353693224649639

 

Comments

I have hashimotos that I also suspect I had for years. Finally saw an integrative doctor that made the correct dx and also turned the symptoms around. Naturethroid, adrenal support and diet were a big help. Wishing you better days ahead!

Your comment, has me very excited!! I have been diagnosised with hashi for probably 10 years… To the point it “ate” my thyroid, I had the remenanats of what was left which was pretty much just scar tissue left removed over 2 years ago !! I thought this would be my miracle cure !! However two years later and still fighting the symptoms and irregular T4 and T3 blood counts my doctor tells me I don’t convert synthtoid to T3 … Tried cytomel and it don’t work, so he took me off and left me hanging,
I stumbled upon a new doctor who I see next week that uses naturethroid… This was the first time I’ve eye heard of it! It is supposed to have T3 in it! Which I don’t ever get as my body won’t convert….

JoAnna, I also do not convert T4 to T3 either and my specialist has me on a medication which is just T3. It is compounded in a slow release capsule. It is called Liothyronine and has made a huge difference to me. It has given me back my life. I am in Australia, however there must be something similar where you are. I hope your new doctor can help you.

I’m so sorry you’re going through this. Your experience parallels my own in many frightening ways. I’ve become convinced that I have Hashis, but am terrified to actually get the diagnosis and feel paralyzed at the thought of what it means for my diet and my life. Your post has encouraged me to finally make the appointment for bloodwork. Thank you and God bless

Thank you for posting this. It’s really hard to continue to deteriorate while doing everything right and seeing all these miraculous success stories around you. While you never made your success seem like a miracle, it certainly seemed like a huge success. Thank you for reminding us that there’s almost always more to everyone’s story. I’m far from any kind of success yet but I like to think about it and often lament what my life would have been like without illness. Thank you for reminding us that it’s made us who we are, and you (especially you) can choose to do good things with it. It’s hard to keep fighting but thank you for the inspiration.

Sarah…you are a hero!!
You are solving your rubics cube. If you can do it, one day it will happen for me…thanks

I was drawn to your blog (from the sea of many Paleo blogs) because I felt like we had a more similarities in our life’s path…in other words, I felt like you were speaking my language. This post is no exception.I’ve had psoriasis since I was a kid and for the past 3+ years I’ve suspected all my joint pain was probably psoriatic arthritis. But even having a lot of unofficial confirmations of this, I still cried like a baby when the official diagnosis came out of the doctors mouth. I think the tears we part relief and part grief. I felt good that I had an explanation but sad because I was officially “defective/broken/diseased”. I couldn’t ignore it anymore and has to accept my new identity of being a person with arthritis. Anyway…I’ve moved on from that diagnosis. My persistent need for answers and solutions has led me to your book/blog and I feel THE MOST empowerment and relief and HOPE that a solution does exist.

Coincidentally, after reading this post, I suspect I have Washington’s too. I have an underactive thyroid and have been on medication for 3 years now and many similar symptoms. I guess I’ll add this to my list of questions when I see my first integrative medicine doc in march. My previous western medicine docs never used the term Hashimoto’s disease nor did they elude to a specific course of nutrition.

Anyway. THANK YOU for sharing your story and knowledge. It helps me tremendously. AND I’m having my first Paleo dinner club on January 28th.

This post reads like my own biography, especially the teenage years. Our experiences with early Hashimoto’s are so similar. Thank you for vulnerably and honestly sharing your thoughts and feelings about your diagnosis. Your posts do make the rest of us feel less alone. We readers/fans are grieving with you, but we also know that feeling of relief that finally comes with a clear diagnosis.
2014 was a year of tremendous personal success for you. Here’s to 2015 being the year of HEALING!

Hey there. I know how you feel, I was diagnosed with Hashimoto’s Thyroiditis almost 3 years ago and it hasn’t been easy. What started as extreme weight loss ( I lost almost a pound a day until I was 85 lbs and had no muscle) to gaining that weight back plus 20 lbs. The ups and downs upset me, but if you are with the right doctor, it can be controlled. Going mostly Paleo and practicing yoga and other relaxation techniques to control the anxiety has made all the difference. Be well my friend 🙂

Thank you for posting this. My journey resembles yours pretty accurately. It is unfortunate though that western medicine doesn’t know how to identify, treat and cure many of these now common ailments. My teen years were the same but my diagnosis were vast; rheumatoid arthritis, lupus, fibromyalgia, chronic fatigue, etc. and the treatments were even worse. It sucks to been a teen with a developing brain and not understand why you feel this way and why none of your friends do. I found my own way through alternative and integrative approaches to understand that it is merely Hashimoto’s and Celiacs disease…so closely bonded. I understand and appreciate your courage and know that we are here for a greater cause. We are the example to educate others. Carry through our own suffering to figure out and pave the way for the children of tomorrow so no one has to battle the way that we do. I am a teacher of young children and with my daily lessons and after school classes, I preach and teach a holistic lifestyle to children and families. We are the warriors for generations to come. Your message is amazing, stay strong!

I was -finally- diagnosed with Hashimotos 10 months ago, but I knew it was there since I gave birth to my 3 yr. I felt terrible and nothing came up on the tests, the doctor just gave me the ” That’s because you have four kids” diagnosis. I felt like a lazy cow for months , until I started Paleo. The symptoms dissapeared and then -again- hit a plateau and mold exposure worsen my symptoms and developed eczema. I put some weight back and my face was a mess, the lethargic days and fatigue were back. Then I knew something was very wrong. I was doing everything ” right” I was Paleo and workout everday. Then came the diagnosis. I must say I was happy, finally I have ANSWERS. But the journey was just beginning, they put me on synthetic meds and I felt terrible, anxious, depressed, I asked for a switch to a more natural prescription and after 3-5 months of working with the dosage finally everything started to get better and better. The energy was back, the extra weight was gone. I continued to struggle with the eczema but then I discovered tallow balm and starting to make my own products. Now my numbers are almost normal, but most importantly: I feel great! I took charge of myself, and although, I know there’s certain things I cannot change, I -still- can improve my health. Keep it up Sarah your NOT alone.

Amazing story Sarah. I am going to find out the results this week of my autoimmune antibody panel, to see if something has added onto my celiac. I am afraid and hopeful at the same time. It’s just time to stop hurting. Bless you in your journey.

Sarah, I have Hashimoto’s. Can you share your protocol? And talk about TPO antibodies. Do you have other infections or possibly lyme disease?

Same here! Was wondering the same things. When I was diagnosed with Hashis a few years ago, I had no clue what that even meant or what to do about it. Of course, the endocrinologists didn’t give me anything for it or tell me much of anything that was helpful!? *Still just trying to accept it and learn more about it*. But I kept trying to analyze, dig deeper, and figure out WHY… I have subsequently been diagnosed with Lyme Disease (and company). Unfortunately, we also know now that I passed it to my little boys, and now I wonder, seeing the whole family tree, whether I was born with it, too. Of course there are other factors to consider. For us it has been looking into things like MTHFR and other detoxification pathway stuff, etc. to get our supplements right. It has really been a ride. My hormones are still a mess. I can feel it. I could’ve written this post, too.

I didn’t know much about autoimmune disease until I get with my husband. He has JRA.
He is also the epedamy of PICKY EATER.
So getting him to eat any thing that a rabbit would eat is tricky to say the least.
Then 4 months ago I found out what has been wrong for the last 36 years. It had gotten so much worse over the last 10 years. And I didn’t understand why. I just knew I was not me anymore. I almost felt as though I was going crazy.
Now I know that I have Hashimoto’s and I can do something about it.
Thanks to you and a few others who care enough to put this information out here.
I have changed my diet and I am starting to recognize the woman in the mirror again.
I haven’t given up on getting g my husband to change his diet either.
Don’t you ever give up either. We need more people like you in the world.

I cannot say it enough……
THANK YOU !!!

I also have Hashimoto’s, diagnosed last August after 5 years of under and poorly treated hypothyroidism causing infertility issues among the common offending symptoms. I had to learn to advocate for myself with my doctors and even now I have to find a new doctor who will listen to me according to what my symptoms are at, where my Free T3 and Free T4 are at (NOT TSH, it is a PITUITARY hormone not a thyroid hormone) and willing to Rx natural dessicated thyroid hormone at the dosage I need. Interestingly enough, the month I asked to switch to NDT, I got pregnant with my very healthy son due in May. My body needed that T3! (Many thyroid patients find that their bodies can’t convert the synthetic T4-only meds into active T3, even when supplementing with selenium.)

Sarah, I too have Hashimotos that took a long time to get diagnosed and it took me (by the grace of God) a long time to figure out how to feel better (many years). At first it felt like a curse, I mean why wouldn’t it after losing 2 babies? Honestly, somedays it still feels that way. However, I now see it the same way you do. I rejoice in it and am thankful because through my journey I have been able to learn more about health and nutrition than I ever thought possible and help numerous people in their journey. It is so rewarding. I have also been able to put the puzzle pieces together from my past and get rid of severe eczema, asthma, depression and more. I have to say that your work has helped me tremendously. Thank you for your sacrifice. If you want to read my Hashimotos story with before and after pictures you can here http://feastingonjoy.com/about/my-health-journey/

I understand completely, and I’ve discovered a couple more pieces to this puzzle in my 5+ years of dealing with Hashimoto’s. The most important lifestyle lesson I learned came from my doctor. He said, “Rest. If you don’t rest, you won’t get better.” I’ve found that a nice twelve hour night on occasion does wonders for my linear thinking. I’ve also found that I sometimes need to spend a day reading, and not feeling guilty about it.

Having said that, I’ve learned that I don’t have to lay down and die. At first I just slept/starred for a couple of years until my TSH finally settled down. When I tried to regain control of my life, I needed large amounts of anti-inflammatory medication that caused yet more problems. When my doctor pulled me off of them, he declared I was depressed and put me on Wellbutrin. Do you know that Wellbutrin can completely mask pain? As a result my knee began to deteriorate.

Finally, the diagnosis of arthritis came, and with it Zorvolex. Zorvolex is a wonder drug as far as I’m concerned. It reduces inflammation and pain, and increases bowel movements. Without the pain, I don’t have much to be depressed about, since I’ve already been through the grief cycle. Take courage! This too is for a season!

And finally, I learned quite by accident that diet matters. My husband went on the ‘Wheat Belly’ diet, and I became healthier! I’m not quite paleo. I find that oat flour helps my sugar to stabilize, and spelt flour can be eaten on occasion. More than a little of regular flour, of any sort, however, knocks me down hard.

I hope this helps. You’re miles ahead of where I was upon diagnosis. I had never heard of hypothyroidism or Hashimoto’s, and I thought that an auto immune disorder was AIDS. There also wasn’t much information on the internet, although I spent years reading everything I could. Take courage, you won’t ever work fifty hour work weeks, (and still keep up at home), but you will live a relatively normal and happy life! 😉 You’re already on your way to feeling better….

Sarah
I purchased your first book and Hashimotos Thyroiditis- getting to the root cause and have been using both of these to write educational continuing education credits for nurses. My first course was on the thyroid, second on Hashimotos and third on probiotics. I have Hashis- And it angers me and I am dismayed at how little our current healthcare providers know about it. And how little they seem to want to lnow- My courses are holistic in approach- and not a single one has sold- I have them listed on Pedagogy-here is a link: http://www.pedagogyeducation.com/Main-Campus/Class-Catalog/General/Class.aspx?Class=210
I was diagnosed 15 years ago but not correctly treated until 2 years ago- Your book and the other one I mentioned really set me on track. I still grieve for all the lost years of not being able to do so many things- I think what really set it off was my hospice nursing- between the stress of being a hospice nurse and taking 50% call I was always exhausted.Then my son died and my house burned down. I am now teaching fermentation courses, and have spent the past two years crawling out of the hole that almost consumed me. I truly understand your frustration with the current medical system and your grief. All the best to you

I am a nurse as well. I too have Hashimoto’s. I am even a health coach, as everything I learned on my healing journey made me want to help others. I am very disheartened as well that the medical staff I come in contact with primarily has no interest in learning how to heal without medicine. All they do for patients that to me look autoimmune, is push drugs or send them to another doctor with a referral. Staff that I see are sick (just about everyone) ignores any advice I give them (and they see how different I am since I began my own healing journey in 2013). I feel very alone at work and at home, as my family has no interest in me since I changed my lifestyle. I feel a major depression coming on over my solitude in life, and am afraid that with that, will come my conditions all over again. I respect you so much for trying to get the word out to medical staff, but it seems working in the mainstream model holistically is not a possibility. Just ridicule. Hugs to you, and I hope you find your path where you can create change successfully. Perhaps go to IIN so you can become a health coach would work for you?

I learned from stopthethyroidmadness.com to ask for specific tests to find out what exactly was going on with my daughter. Because of the kind old country doctor minded physician I asked them from, we found she has hashi’s. At this point She is so depressed she can’t tolerate a huge lifestyle change so we’re incrementing it into place. I am sorry for your new dx but I am glad for all the info you will pour into this area of difficulty for so many.
Doctors should always run the full test on people but big pharma and endos lock physicians hands in so many ways!

Sarah, you’ve got this!! As a fellow hashimoto’s patient, I get the frustration. My Hashi’s diagnosis came easily several years ago, but my health still quickly declined until my underlying missing piece was revealed as celiac disease. When I finally got that missing link was when I finally felt like I COULD do this. AIP, paleo and TPA have changed my world. You’ve helped so many – and will continue to for so long. Keep your head up!

Diagnosed with celiac at age 60, then Hashimoto’s. I can handle the celiac with gluten-free eating and my gut is healing according to all lab results, but the Hashimoto’s is a daily obstacle. Learning to cope , reading everything, and going to try a naturopathic clinic for their suggestions. I keep telling myself that I am thankful that I don’t have to do chemo, I don’t have to do injections, these are not the worst diseases to have.

Thanks for writing ‘your’ story … I will call it ‘our’ story as it feels like I wrote it. I didn’t get diagnosed until I was 61 and I’m doing a bit better. But I now have 7 auto-immune disorders … Everything you wrote about is so spot on. Thanks again.

So how did they finally diagnose your Hashimotos? Was it through TSH or antibodies? My mother has Hashi and I would like to be tested, but can’t get dr. to cooperate. What do I ask for?

Dr. Sarah, hopefully you realize that although the FT4 and FT3 are two of the most underutilized but helpful tests, they are also two of the most problematic in terms of accuracy. PR

Dearest Sarah, you are a hero to me too. You’re not only a brilliant intellectual whose work has saved untold numbers of people, but a wonderful artist (retired art teacher here 😉 ) AND a woman o heart. While there is not much I can tell you that you don’t already know about the medical aspects of this disease, I can only offer my understanding, prayers for your strength, my undying appreciation, and a gigantic cyber-hug. From one lion heart to another: O!

I am so sorry for you to have joined our Hashi world. As you say, thankfully you know how to help yourself, and thank you SO VERY VERY VERY MUCH for helping the rest of us, and especially at the peril of your own health.

I have another silver lining for you: at least you know what Hashi is.
Like so many others, when I received my Hashi diagnosis, I was told it was “no big deal” and here, take this little pill. No warnings about gluten, soy, processed foods, etc. No advice about other things that will make you feel better. No apologies on the behalf of the medical community for the years and years of “it’s all in your head”.

You at least are coming into this with your eyes open and your boots on, so to speak. I can’t begin to tell you how grateful I am for all you have done and all you continue to do. So incredibly grateful for the knowledge and ammunition you have given us! 🙂

Take care of yourself! 🙂

Come join the Hashimoto’s 411 group in facebook, as there is always comfort with others with this horrible thing. Have been following you for years now, and am sad that you have a story mirroring mine down to the second tallest girl in the class, then just started growing outwards.

Loved this blog! I also went through what you experienced growing up. All of my teenage years and early adulthood was difficult! It even contributed to the demise of my first marriage. He thought I was lazy because all I could do was work and sleep. I was diagnosed at 31 with Hashimotos. Treatment helped but I continued to have problems with severe fatigue and pain. Then I was diagnosed with fibromyalgia after a few years of being told I was just depressed or it was all in my head. After 25 years of searching for answers, seeing Doc after Doc I was diagnosed with Leukocytic Colitis, Lupus, Reynauds. I have developed disks herniations with nerve compression, migrains, glaucoma, AVN of my femurs and tibias, memory problems, depression, anxiety and other issues. I believe because of eating crappy food along with undiagnosed Autoimmune diseases which causes inflammation.
I love your site! It has so much information and provides encouragement. Eating Paleo has helped to to feel better!

I just read this again while at work and am in tears. This sounds very similar to my story. As a health coach I didn’t realize the symptoms I had. This has changed my life and my coaching platform. You do amazing work and your research has given me the support I need. With this article you also give permission to grieve. Thank you. You are an amazing woman. Take care of YOU now.

Hi Sara,

I haven’t written here for awhile, but your post moved me. I have some of your symptoms, and low T4 – or is it 3? so I was especially interested in your diagnosis. Also, I was obese years ago, and have a history of extreme dieting, bulimia, and weight loss and regain. After losing the weight – 80 pounds – almost 30 years ago, I ate weirdly in different ways over the years, desperate to just keep the weight off and still EAT. Meaning, there were years I ate enormous amounts of vegetables – I turned orange – and was never constipated then! – and in later years basically ate a few bags of hard candy for dinner and a small “normal” lunch. That would be it. The weight crept up anyway. I was a little too thin for a long time I think, and ended up at a slightly chubbier weight than I’d like – naturally.

Since Paleo and tweaking and researching, I’m eating really well, but still many of my symptoms remained. The one you don’t have – ability to concentrate – is one I’ve always had, and I’m not sure it’s due to a Thyroid issue. One major symptom I did have that has persisted would be low-energy. If I was in weight-gaining mode I felt better, and thought this had to be because perhaps I was meant to be a lot fatter. But it didn’t really make sense. Here’s the amazing thing: since consuming fermented vegetable juice, my energy levels have skyrocketed. No more dragging my feet if I walk too soon after eating. I am zooming along! I must attribute this to the juice, because it’s the only change I made. I really eat the same things in the same amounts every day. And I was consuming fermented vegetables for ages – it’s the juice. I can’t think of anything else.

I’d love to hear your thoughts on this. I’m wondering – very unscientifically – if somehow the juice gets in there to the intestines in a way the food doesn’t? Faster – better? I’m buying the stuff from Wise Choice Market, but of course one can easily make it. (I’m lazy).

By the way, other symptoms haven’t changed. I’m still a nut job with plenty of anxiety. Still can’t concentrate. Still what I call lazy, meaning there are things I supposedly want to do and don’t do them. I’m sensitive to both hot and cold – my comfort window for both is narrower than most people’s. Dry skin and hair still. Puberty wasn’t early and my periods were always fairly regular. Definitely have been constipated, and that is much better. No headaches. Sooo – who knows? I should have some blood work done to see if anything has changed since the juice. My cholesterol has always been high; my fantasy is that the juice lowered it. I just hate the the doctors’ reactions to my high cholesterol… Anyway –

All the best to you as you heal.

Debbie

Thank you for your post. I love your honesty. I have also had hashis for many years and I follow a strict paleo diet. So many books and blogs go on about how a paleo diet will put your autoimmune disease in full remission and “cure” you. I know it helps and gives the best outcome, but it is nice to hear that it is not just me that still struggles with hashis even though I am medicated, eat paleo and exercise often. Stress also effects the immune system and this is the one thing we can not fully control in this busy life sometimes. Thank you x

Wow I have all of those problems. I’ve been on a long journey through diets starting with GAPS leading to Paleo and I just started AIP two weeks ago. I have an appointment in a week because of the tingling and numbness I keep getting. I wasn’t even going to mention the other issues since I felt they were so minor. I guess I should bring it up. I also have found (through slips) that gluten makes me very bloated (I look about 7 months pregnant) . Is that related to hashimoto’s?

Hello Sarah! I am your greatest fan! I study your podcasts and your book! It has helped so much in my recovery from Hashimoto’s and Fibromyalgia. My kids also have autoimmune. Well. You may wish to add Low Dose Naltrexone to your regime. I did and saw that many of my endocrine hormones bounced back to normal. The lower inflammation really helps. My health crash was right around menopause, but I think I had Hashi’s my whole life. Bio HRT also helps. Hugs and love to you and your beautiful family. You are an inspiration to me.
In Health, Kitty

Dear Sarah,

Thank you for your emotionally balanced and honest post about your Hashimoto’s. I am sad with you.
I am 66 years old, diagnosed with Hashimotos and Hypoparathyroidism (with surgery for both) in 2006. I share many of your symptoms, and have all my life. I too suspected that I had a thyroid problem in early adulthood, but was always under the radar in blood work. Over the past 30 years I gained 30 pounds in spite of exercise and “healthy” eating. I was always trying to lose weight, was told I didn’t have a gluten problem (in spite of the fact that my brother had celiac, or “a starch intolerance” from birth), was macrobiotic, vegetarian, vegan and just keep gaining. After opening to the page on Hashimoto’s in “It Starts with Food” in June of this year, I began my journey into Paleo land. Your books and blog have been my main source of information and direction for the AIP after a couple of months of the Whole 30. Fifteen pounds have easily fallen off, and I feel good. I believe that this is the way toward good health for me.
Although I feel like I’m grieving with a friend, I’m encouraged in believing that you will continue to be a “wounded healer” with this additional diagnosis.
Thank you for everything you do for those fortunate enough to be connected with you and your work.

Peggy

Congrats on finally getting a correct diagnosis!!! I realize that they sounds crazy to say, however, you now can get the correct medical help and move forward towards an even brighter future! I was diagnosed a couple of years ago and it’s been a long and lonely journey. Now, I am moving forward to an exciting future! I’m with a great doctor who partners with me. You will finally have all the unsolved mysteries solved. Just think, in 6 months you’ll be much better and it will be summer. (I don’t like winter). Good luck on your new journey of even better health! Your books have had an enormous impact on my life. I thank you for being you! God Bless!

Sarah,

You are such an incredible voice of knowledge and wisdom. I know you will take this diagnosis and move towards optimal health! I am thrilled that there is a resource in Atlanta (we are practically neighbors) that was so instrumental in getting to the bottom of your symptoms. I look forward to following your health journey. And when you are up for it, meet me at that yoga studio in E.Cobb for a great flow!

All the best,

Rachel

Thank you so much for sharing. I have both Graves’ antibodies and Hashi’s. I seem to have kicked the Graves before I became a mom and have kept the Hashi’s from flaring too badly after two pregnancies but have been thinking about taking bio-identical thyroid (Nature-throid). I was hesitating (as a dr. said I should first strengthen my adrenals) this fall and then was so inspired by your talk at Take Back Your Health in November that I’m finally trying life without eggs and nuts to see if that helps with things – fatigue, psoriasis, constipation. Well, really with the inflammatory response that sets the stage for it all. My TPO is not as high as it’s been, TSH normal, T3 and reverseT3 a little low-normal but not crazy. I have really gotten present to the fact that stress management is a crucial part of this whole thing. I think being undiagnosed celiac and sleeping poorly all my life set the stage for me (then worse eating, drinking, mono and longterm Pill usage clinched the deal). I wish you (and me!) the best and will look forward to your updates!

Sarah, I’m so sorry to hear all of this – as a Nutritional Balancing practitioner who has seen hundreds of people recover completely and permanently from Hashimoto’s, Graves and other auto-immune disorders, it is so incredibly frustrating to read about your struggle – there IS a solution, one that works and permanently reverses these conditions and is holistic, and affordable – and yet is is not widely known because the medical community does a good job of spreading the word that these disorders are not reversible. I URGE you to come read my article on thyroid disorders, and to come learn about Nutritional Balancing which is predicated on a Hair Tissue Mineral Analysis. And to those of you who have not been diagnosed yet but deeply suspect that something’s wrong, I suggest you get a properly analyzed Hair Analysis as soon as possible, so you can finally begin your healing journey that thankfully has an end. Believe me when I say, there is hope! Please don’t think that you need to relegate yourselves to a life of hormone replacements. http:// http://www.butterhealth. com/thyroid-disease/

I’ve dealt with scalp psoriasis for 30 years. Currently I’m experiencing a severe flare. I’m curious which Morrocco Methods products you have found help control your condition.

Sarah, I’m so thankful you’re sharing this story with us. I have no doubt it will help so many, probably yourself included as it is therapeutic to have a platform and an outlet like a blog. Your comment about secondary autoimmune diseases piqued my interest {I have psoriasis, psoriatic arthritis, and raynaud’s}. On my thyroid panel in June, I didn’t have elevated antibodies, but was what my ND considered to be the “very low end of normal” for t3 and t4. I’ve never been tested for Celiac or UC. I don’t really want to chase after new diagnoses and venture farther down the rabbit hole but I can’t help but wonder… 🙂 I know you’ll rise above this Hashi’s diagnosis and continue to inspire and educate. Nothing but love and respect for you!

I would like to know what type of doctor you go to. I live in a very small town and none of the doctors seem to be concern. It seems very difficult to get them to do anything. I always have to ask to have certain test done.

Hi Sarah,

I’m sorry. As you can see, you are not alone. I’ve had hashi for 5 years. I’ve been following you for 2. The meds will help but most importantly you already know the keys to make you feel better. Until I found you, I didn’t have those keys. Thank you! Better days are ahead. Hugs!

Yours is an all too common story, suffering for years because thyroid testing is anything but highly accurate, although allopathic medicine treats it as such. Calling the reference range the ‘normal’ range is a complete misnomer because it implies a degree of accuracy the tests cannot support. It is a population reference range not a highly accurate diagnostic range. I can give you the short course in the science of the limitations of the Thyroid Function Tests if you are interested. You have the platform to disseminate the information to a wider audience. You have my email if you are interested in learning more. Thank you for all that you have done, you have been a positive influence in many peoples’ lives. PR

I applaud you for relentlessly not giving into your diagnosis grief. I’ve been Hoshi for 25 years. It was only 4 years ago I finally found a doctor that “got it” and suggested the no carb connection. Along with the nutritional change, he also only prescribed the name brand Synthroid, not the generic drug most doctors prescribe. It obviously costs a little more but it does make a difference. The genetic form allows for a deviation of .25 mcg which does make a difference. In my own in indepth research of hoshimotos, which I started about a year ago, I not only switched to the Paleo lifestyle but found the genetic link through the family tree and what triggered it (mono) when I was 14 years old. I’m not going to sugar coat it, it’s a daily struggle especially the emotional side of the disease; but understanding that it is the disease (and not in your head) you can keep moving forward.

Hashi’s diagnosis is just another beginning to another long journey…. sorry you have to travel this road but I can’t think of anyone better qualified to deal with it!

I wonder if it was possible for the diagnosis because you had a flare-up as a result of stress? It looks from what you wrote that you may have had the Hashi’s well under control – hence the “borderline” tests. I’m still working on figuring out what foods I can tolerate, though with my elimination diet my numbers have improved on all the tests.

A second thought I have concerns the childhood Mono. I work with a local Naturopath (don’t have a Functional Medicine doc either in the area or that I can afford) and she had me tested for re-activated Mono due to my continued low energy levels. It turns out I have it and will begin treatment for it soon, so just wanted to pas that along in case it’s helpful.

Hi Sarah, I am sorry for your diagnosis, but it is good to finally have some anwers. I was diagnosed with Hashi’s about 10 years ago, but only started taking meds about 2 years ago, and following a Paleo diet about a year and a half ago. I’ve seen much improvement in all my symptoms since then (I had many in the list you link to).

I am hoping you will share with us what thyroid meds you are taking, dosage, etc. Also, since you are already following an AIP diet, what will change in your routine as a result of this diagnosis?

I find it hard to tell sometimes how my diet is affecting my thyroid, as there is no telltale rash or stomach ache involved, and low thyroid symptoms can be so vague.

Your story is mine, though I didn’t start until I was 40. I had lap band surgery in 2007 and only lost 50 pounds, starting at 268. A year later my gall bladder was destroyed and I had to have it removed. Since then, the weight has piled back on. I was finally diagnosed in September after ANOTHER trip to the ER. Finally, the doc there told me she thought it was thyroid related. I totally understand your anger. Grief, also, but anger prevails. I am convinced my Mother died of this. I relived her decline as I was declining last year. I truly thought I would die, if not from what I had, but possibly by my own hand. I was scared. I am so thankful for my husband of 2 years who has supported me the whole way. And thank you for your efforts and for sharing your story.

WOW! Where have you been all my life?? LOL. I subscribe to your regular emails, but don’t often have time to really read them. As I sit at my kitchen table, eating delicious paleo-banana pancakes *yum!, and recover from a 50 mile ultra I ran yesterday, I have the time! Your journey is slightly different from mine, but I too was diagnosed with hypothyroid. I was diagnosed at age 28 with the pregnancy of my first child. My TSH level at that time, was 300. None of my doctors had ever seen it so high on a woman (I weighed maybe 150 wet and pregnant). I suspect I had hypothyroid VERY young, as I was absolutely athletic and active (ran track and cross country from age 10, club/travel soccer from age 12), and was an exercise fiend, but everyone described me as “chunky”. My mom has diagnosed hyperthyroid since I was about age 12, and my sister also is hypo. I then found out through migraines that were debiliatating, that I had a gluten insensitivity in 2009. But hey i thought, I’m not giving up all bread just so I don’t have a headache. I would quit for a while, then start again. About that time, I also found out that I was lactose intolerant. Again, boo. Finally, after 20 years of struggling and wondering and suffering through so many symptoms, I could write a book, I asked my then primary to please run a celiac panel. Boy was she surprized when it came back, “highly positive”. So, here I am: hypothyroid, celiac, depression, menopause (that’s a whole other ball of trouble), and feeling better, but still not “right”. I have been on a paleo diet for about 2 months now, after being challenged to do a 21 day sugar detox (I kept a bag of Skittles on me at all times; can you say problem??). Again, I feel better, but not “right”. I have an appt. on Wednesday to see a new primary doctor, (he’s young and enthusiastic, so I hear), and I wonder what he is going to say of my laundry list of issues. However, the gist is, I want him to see if I have Hashimoto’s and if so, help me to control it. I don’t think the dose of Synthroid is right for me, and I am concerned that some makers of Synthroid use gluten in their formulas, but don’t know how to guarantee that, or perhaps switch brands. Thank you for your post, your blogs, and your fabulous books!! Bless you in your journey.

I have the opposite condition. What started out as Hyperthyroidism in 2012 turned into Graves disease. This condition not only has a lot of the same symptoms as hypo, it also effected my eyes – one being more effected than the other. We were unable to control to it with medication and radiation was ruled out due to the eyes so in 2013 the thyroid was removed. What a difference it made in just a week! It has been a journey finding the right medication and dosage. I have had one surgery to correct the affected eye and will have eyelid surgery to help cover the eyes better which will help with the extreme dryness (I hope) and self esteem. Who’d have thought that one small gland could control so much! I know it’s not over yet, but it’s been a humbling experience.

Thank you for posting this! I felt like I was reading my life – I have been sick since I was a kid but blood work was always normal until last year. My ANA test came back abnormal but still no diagnosis – other than psoriatic arthritis so many Symptoms – worse and worse every since I was 10 (started puberty at 10 as well) and now after reading this – I can’t believe the similarities (except I was only 4’11 when I stopped growing – lol). Will definitely be pushing for further testing. Thank you for all that you share!:)

I asked my doctor when I was 25 whether or not I could have hashi’s due to symptoms and a strong family history and was told, “that is a disease for people in menopause.”
Fast forward 8 years and a new medical practitioner. Finally diagnosis: Celiacs and Hashimoto’s. The 2 years since my diagnosis has been such a frustrating process. Always being told do this and you will feel better…take the medication, go gluten free, go paleo, treat yeast, do acupuncture, take different medication, take supplements, do AIP. Just this last week, I wept in the doctors office. Here I am 35 and I can’t get on top of my symptoms. She changed my medications yet again, adding in active T3, (It was recently discovered that I have MTHFR). Yesterday was the first day that I can remember that I lived my whole day. I thought clearly, I worked around my house without having an energy crash. I wasn’t short tempered and unpleasant to be around. I don’t know yet if this new medication is the final piece in my puzzle, but I have hope. I say all this to say what you already know, it’s a process. I pray for you that it is a short process to find your balance.

Many people with Hashimotos don’t convert T4 to T3 efficiently. Including T3 was a huge turning point in my healing process. (I prefer time released compounded T3, by the way, because straight Cytomel can be a constant jolt to the system. Think of Cytomel as a bomb and time released Cytomel as a constant burning candle.) I also have the MTHFR mutation. In fact I have a double MTHFR polymorphism. It’s my understanding that this has contributed to my disease (along with a slew of other polymorphisms that interfere with Phase I and II detoxification cycles) by allowing huge build up of heavy metals and other toxins in my system. But I have never heard reference to MTHFR as a direct reason that T4 isn’t converting to T3 (aside from the related toxicity issues). Can you please tell me more about what your doctor explained is the connection there and why s/he put you on T3 because of the MTHFR SNP? Thanks!!!

So sorry to hear about your Hashimoto diagnosis. I too, have Hashi’s , and your childhood history sounds all too familiar. I had mono at 14 and never felt the same again. It took 32 years for my diagnosis to finally come, about the same time I found you! You are an inspiration to all of us no matter what kind of autoimmune disease we may have. The information you share helps me communicate with my health care providers, and empowers me to care for myself so much better, for that I am forever grateful.
Looking forward to seeing you in St. Louis!
Much love,
Dawn

Sorry to hear it, but glad you finally know. You’ve been in my thoughts for months as I could tell by your newsletters that your health was declining. Been there, done that…the whole nine yards of wondering and the ‘lesser life’ for decades, until finding the right doctor (an M.D./Naturopath) who got me and my daughter on the right diet and the path to wellness. if you’re interested in my diet, which has put my Hashi’s, RA, Fibro, CFS, and all the rest into remission for nearly 25 years, let me know.

Be well,
Barb

Dear Sarah:

So sorry that you have the diagnosis to deal with. But if I had had all those problems I would be delighted that the doctor had a direction to go now!
At least it was not cancer . That was my diagnosis but I got through it and am now 85.
I am just appaled at the number of people that go,to,Drs and still do not get diagnosed! Is it because the Drs do not ask enough questions or the wrong questions?
All the best as you start your treatment! At least you know what to eat!

OH, NO!!!! You are so educated and have done so much to heal yourself and keep symptoms of Hashimoto’s thyroiditis auto-immune finally become apparent is very disheartening. Please, please, please become as educated as possible about ALL its side-effects and the way it changes as you go thru life. Maybe the stress of writing the books and the website and all else you do did not trigger a flare — it may be that peri-menopause (which can begin 10 yrs or more before actual menses cease) and a drop in hormones triggered the worse symptoms. People have already mentioned the website “Stop The Thyroid Madness” — please go there and if you can, also buy the first book FOR patients, and since up to now, so few doctors have “gotten it” on how to actually treat this progressive disease, there was second book written BY DOCTORS (including MDs, naturopaths, etc) so that we can educate our AMA-blinded doctors about the BEST TREATMENTS. Be sure that your doctor does not just use levothyroxine/T4/Synthroid on you, but evaluates if you begin having Reverse T3 or are not converting from T4 to active T3 (some of us do not do well taking T4-only pills). Also be sure the cortisol results (test taken 4 times per day, not just once), that iron levels (4 tests to be SURE the “normal” ferritin levels are not just from some hidden inflammation) and that insulin-resistance or blood-sugar-glucose is not causing the thyroid hormones to be prevented from actually getting IN to do their job inside each cell. Body tissue is DIFFERENT from pituitary tissue — seems like the pituitary sucks up all available thyroid hormones floating around in the blood and so its resulting “Thyroid Stimulating Hormone” TSH shows as “within range” while all around it the body’s cells are crying out to get some T3 active thyroid hormone into them! A horrible paradox that the regular medical establishment isn’t clued into yet (endocrinologists who only test serum levels of TSH and T4, I am talking to you). But medical establishment aside, the treatment for Hashimoto’s has SO MANY facets — and someone also mentioned the Methylation issue (mutated genes for MTHFR) which can be tested for with genetic testing and then subsequent review to see if those genes are causing a problem with detox from heavy metals and other drugs/toxins or absorption and utilization of B12 and folate and other vitamins & essential minerals. Selenium and magnesium are two that so many people are deficient in, and cells cannot worth without adequate levels of those. Iodine is a little controversial, but some may do well on a treatment including supplementation BUT with all the companion nutrients. So happy you are already a researcher since — after the grief simmers down a tiny bit — your brilliant scientific brain can hopefully still have enough thyroid hormone going into it (so many of us hypothyroid/Hashimoto’s/removed-thyroid people are afflicted with “brain fog” as we get older and just cannot think the way we used to in our earlier years) and you will find the best treatments and tests to run yourself, and /or can DEMAND your medical providers give you. In my state, regular medical doctors can have their license to practice yanked by the boards if they treat low-thyroid patients and go beyond the “standard protocol” (which means TSH & T4 must be in range and don’t care AT ALL about Free T3, Reverse T3, good mineral & vitamin levels, adrenal/cortisol levels, aldosterone levels, female/male hormone levels or bioidentical replacements, osteoporosis prevention, etc).

So THANK YOU for helping us Hashimoto’s sufferers already through a better way of eating that REDUCES those nasty antibodies (TPO, TgAB, etc) — but people did not eat their way into this disease and cannot fully eat their way out of it. It’s a life-long adjustment process, tracking down the changes we might need to make in our treatments, and treating all those side issues which might include EBV, Lyme, Lupus, diabetes. I wish you All the best, and hope you DO feel better and get better soon! I could go on for a few hours, but hope that everyone who has a thyroid problem, suspects a thyroid problem, or has someone in their circle of family or friends with a thyroid problem will get educated about ALL the tricky issues and insist on the BEST treatment available. Here’s to the educating of our society in a new, healthful way! ~ Grace

I am sorry that you are joining those of us with Hashis. I found your blog through searching for things to help with being hypo and having psoriasis. I wish I could say my journey has been successful, but I am still struggling with the results of these disorders. It is very hard sometimes to muster up the energy for more efforts. I just want to be ‘normal’, but really don’t know what that is. I have probably had this disorder for a very long time and just did not know it. I wish you the very best on your journey.

Sarah,
I am sorry to hear about your recent (delayed) diagnosis) if Hashimoto’s. It can be very overwhelming. I, too, was diagnosed this past year & had never heard of it before then. I’ve resource that I have found most helpful that you may have already found is the book by Izabella Wentz called Hashimoto’s: The Root Cause. She is a pharmacist that found her root cause & put her disease in remission. Although mine is not there yet, I am working on it & have minimal symptoms at this time. I wish you the best in finding some relief & eventual remission to your Hashimoto’s! It is possible!
All the Best!

So sorry Sarah. The light you have shed on this disease has been a blessing to me. Drs told me my thryoid was not working but my levels were normal. I had goiters growing inward so they removed my thryoid. This was a blessing as cancer was found in very early stages so no further treatment needed. My levels are still not regulated and my thyroid was removed in 2010. I am ready for my doctor next time!! I may just change if I could find a better doctor here in Oklahoma. God Bless You and I will pray for you and your journey thur all of this. Thanks for all of you help and guidance.

Dear Sarah, I have bought your fantastic books and December 1, 2014 I switched myself and my two children to the autoimmune protocol (long history of autoimmunity in the family) and we think of you as we make plantain crackers and taro hash! 🙂 I must confess that it surprises me very much that your underlying/undiagnosed Hashimoto had not gone into remission considering that you yourself have been following the AIP for years. I have had Hashimoto for 10 years and I am optimistic that the new AIP diet we are following will help me eventually get the auto-antibody count down and bring the disease into remission. Why do you think this didn’t happen with you? Do you think it was the stress of writing the books? But doesn’t the AIP diet gov our bodies the resilience to deal with the different stresses that comes up? Is avoiding stress as important as maintaining the AIP diet? Every perspective helps, thanks! Diana

SO I am very sorry for your diagnosis. With that said I have a couple of questions because I too suffer from low thyroid issues. I have not been diagnosed with Hashimotos (yet) but I am due for some testing. I was under the impression that you can heal your body to the point that you do not need any medications. Is this wrong? I was doing well on Armour Thyroid but because I am feeling so great and got rid of fibro with diet etc, I recently switched it out for a thyroid support supplement which contains l-tyrosine, iodine and Ashwagandha among other things.
My main symptoms currently are VERY thin hair, cold hands and feet in winter only, thin nails and dry skin. The skin could be my age as I am 57 but not sure.
My question is should I go back on Armour thyroid, what are you taking and I probably already know the answer to this but should I get tested for Hashi?
Thank you and again, I am so sorry to hear of your health struggles.
PS. I recently ended up in the hospital with galbladder issues and they wanted to remove it. I said no and went home to heal it naturally. Its been almost two months with no flares. Anyway, when people express concern for “all I have been through over the last couple of years” (brain tumor, divorce etc) I say, “Its ok, it just gives me another way to relate to my readers.” (I have a health blog)

Just a few comments about life-long “thyroid medication” — for many people, the natural-dessicated thyroid pills (Armour and other brands) are simply putting into our bodies via mouth what our thyroids have stopped producing — whether through auto-immune gland destruction (yes, some of us with Hashimoto’s have no functioning thyroid tissue at all due to living years without our doctors ever realizing what we should do to reduce the attacks and damage) or through other genetic dysfunctions or essential nutrient deficiencies, or physical, chemical or radiation damage to the thyroid. Apparently it’s never “cured” but levels of natural thyroid hormones are just brought back to “normal” or “functioning” by taking pig-thyroid extract (Armour and other brands) which is supposedly the most like human thyroid tissue (cow-thyroid extract is available but may not be as similar). Some people do well on the levothyroxine/T4/Synthroid pills because their bodies CAN convert this form of thyroid hormone into all the other NECESSARY-FOR-LIFE forms of thyroid hormone — but some of our bodies can’t, or can’t anymore.

IMHO, now that I’ve had to try and fix my disease without a doctor’s help, people should feel free to do their own tests to see if they are at OPTIMAL levels of thyroid hormones (Free T3, Free T4, Reverse T3, and TSH to see if it’s too high but don’t worry about being low if already taking thyroid hormone by mouth, unless it’s indicating a pituitary problem; and some other tests if needed) and then not feel bad or “unnatural” about taking thyroid pills if needed to correct dry skin, nails, hair, coldness and all the other HIDDEN effects of too-low thyroid such as heart disease and other endocrine-system problems (diabetes, adrenal, etc). Just wishing this was more common knowledge — would have saved me years of suffering and below-par life! All the best, ~ Grace

Wishing you the best Sarah! I have Hashimoto’s, but only was only diagnosed 5 years ago. Like you, I suspect that I’ve had it since I was a child. I’m glad you’ve found a good doctor to work with you in healing. My biggest hurdle so far has been to find a good medical doctor that understands the thyroid. Most endocrinologists that I’ve seen know nothing about the thyroid and it’s been so frustrating. I’m finally working with a naturopath who is prescribing me natural dessicated thyroid. I’m still not close to even 100% and I know I might never reach that point, but am working on it. Btw, I have both of your books and the Paleo Approach has helped a lot in terms of reducing the inflammation in my body! In case you’re interested, there are a number of books that have helped me really understand this condition, including “Hashimoto’s Thyroiditis: Lifestyle Interventions for Treating and Finding the Root Cause” and “Stop the Thyroid Madness”.

I want to hug the little girl you were! I was dianoaec last year with hypothyroidism and am taking Natur-throid. I have many of the same symptoms including chronic constipation my entire life which led to SIBO, starving myself, mourning over my hair, periods every two weeks which turned me into a monster teen. I couldn’t control my emotions with all those hormones! Thank you for sharing this honest post Sarah. Thinking of you. I know you will use your diagnose for the good of others.

Hi Sarah, I read your book and appreciated all the effort you put into it. I also think the cookbooks looks great and am saving up for it. now that you’ve been diagnosed with hashimoto’s, do you think you will change anything about what you wrote? Perhaps decrease intake of seaweed as that has bromine, arsenic, and mercury? less iodine? more selenium? weekly acupuncture? balancing hormones as estrogen can cause more AI thyroid attacks? I’ll be interested to see you fight through.

I’ve been fighting for 3 years now. I think I’ve “cured” myself but the fact is, whenever I want to trumpet what worked for me, I realize it’s not that easy and it took me 3 years to get here, and I had a lot of missteps along the way. it must be so hard to be a writer like you and put your issues out there, and thank you for telling the community you have hashimoto’s. you rock!

I hope you will do your own research and take responsibility for your healing and treatment for this. Some additional books you might find helpful:
* Hypothyroidism Type 2 by Starr
* The Ct3m Handbook by Robinson
* Recovering with T3 by Robinson
* Wilson’s Temperature Syndrome by Wilson
* Evidence-Based Approach to Restoring Thyroid Health by Wilson
* The Metabolic Treatment of Fibromyalgia by Lowe
* Mercury Poisoning, the Undiagnosed Epidemic by Hammond
* The Mercury Diaries, by Forsyth

I found none of these books helpful, we are all very different. The only book that came close to having answers for me was Isabella Wentz’s “the root cause”.

I know you are not one to blame…but with your history your doc flowers should have run an Immune cytokine test to see where your autoimmunity was coming from. That would have shown the hashi’s antibodies long ago. Good luck with the hormone, it’s not as easy as it sounds to get the medication right. I’ve been trying for almost 5 years, four different versions of thyroid replacement. Be sure to have yearly ultrasounds to watch for nodules.

I’m sorry to hear about your diagnosis. I hope it will lead to better healing though!

I have had unexplained arthritis for five years and have some of the symptoms on your list, though I haven’t struggled with my weight. I should probably go get checked out for thyroid issues too, since you said that arthritis is usually a secondary symptom.

Thank you and best wishes!

Hashimoto’s is what brought me to gluten free, then paleo, and ultimately to your books. I was diagnosed 3 yrs ago at age 58 when I didn’t understand why I was feeling so “off.” Was this how getting older feels? Like you, I grieved (heavily) but ultimately I was glad to the answer. I’ve been on a modest dose of thyroid med and haven’t had to change the dose in 3 years. Hopefully you have that same experience! Since I don’t want to simply rely on meds, I’m following the AIP and seriously(!) don’t know how I would do it without your books. All the best to you in your Hashi’s journey, Sarah. I will stay tuned…

Oh Dear Sarah,
How I feel your pain. I also struggled all thru childhood but in an opposite way. Underweight, terribly short for my age, psoriasis since age 2, and extreme constipation as long as I can remember.
While the Hashimotos diagnosis sucked unbelievably at least I finally had an answer. It’s been a long hard journey. Now I’m 30 pounds heavier than I’ve ever been and on the verge of diabetes. I actually gain weight with Paleo but believe it was due to an extremely long history of leaky gut.
Please don’t give up, people like me need your information. You give me hope when traditional medicine gave up on me. And because they gave up on me I did also.
We are both worth the investment of being healthy.
Love and hugs, Sheila

So sorry to hear about your diagnosis. I also have Hashimoto’s and have found enormous relief with
NatureThroid. Bioidentical treatment NOT Synthroid!! A few days on naturethroid and my lagging energy did a 180.
Consider having an ion test also – This tests for all deficiencies in minerals, phytonutrients, fatty acids..etc.
This was enormously helpful to me. I’ve had unexplained frequent undiagnosed rashes on my feet since childhood – after the ion test I was told I was not metabolizing fatty acids – was recommended
Evening primrose oil and Black currant seed oil – since those were the only new supplements in my supplement arsenal I attribute the complete dissapation of those rashes to those particualar supplements. Would never have gotten there without the ion test! Your doctor may have mentioned this Also not all functional medicine doctors are well versed in appropriate testing and continue to advance their education as I’ve come to find out – one that is also familiar with and practices a Paleo diet is a huge benefit.
I also drink copious amounts of Greek Mountain Tea – That’s helped with digestion in a huge way for me.

My thoughts are with you… In October, after studying my 9 yr olds neck for 2 weeks, I brought her into the ER where I work just to have one of the physicians I trust look at it just to make sure I wasn’t fabricating it in my head.. He said “I don’t know what it is, but it’s fuller.” That led to me taking her to our primary who happens to specialize in pediatrics and endocrine who advised she has a goiter and we need labs and a ultrasound, now.. That afternoon, we had the testing done, and confirmed that she had antibodies attacking her thyroid. Her TSH was 9.86, fT4 0.8, TPO 313.. My heart sank for her, but I too am on thyroid meds, for what we assumed was acquired hypothyroid. 3 days later, fate got us into a pediatric endocrinologist and confirmed the diagnosis of acquired autoimmune hypothyroid… Your book became my bible and we overhauled our kitchen in 2 hours, discarding everything we previously owned for processed foods and she was started on synthyroid.. Our endocrinologist said that they would have to do a biopsy to confirm that it is hashimoto’s and the treatment isn’t any different and he doesn’t want to put her through that at this point.

I have split emotions about her diagnosis.. I was trying to prepare myself for worse case scenario, so I have to be thankful this is what we deal with instead.. I tell myself if it would have been malignant, I would have begged for just an autoimmune condition. Her diagnosis has made our entire family healthier and I pray that these lifestyles will keep us all much healthier, hopefully protecting us all from more devastating illnesses later on in life.

i was diagnosed with hashimotos in 2002, at age 38. in my teens, 20’s and early 30’s i had terrible panic attacks, “benign” PVC’s that sent me to the ER thinking I was dying,and weird symptoms that sent me to neurology…numbness, tingling type stuff. I started getting “cold hives” when I was 16 and still battle them on and off to this day. It wasn’t until I was sent in for a thyroid biopsy of a “multi-nodular goiter” that i got the hashimotos diagnosis. and astute MD notice the thyroid he was seeing on the ultra sound was “classic hashimotos”. My t3 and TSH levels were always normal. The endo i saw at first always wanted to biopsy my bigger nodule and it always came back “inflammation”. Finally i switched endo’s and found someone who would treat me with some thyroid hormone and voila!!!! Anxiety decreased by a huge amount, nodules shrunk by 1/2, PVC’s only rare…i still battle the cold urticaria and occasional bout of panic…but sooooo much better. it is not all fixed. I believe i have a daily and gluten intolerance as well as some other foods, i am always fighting 10-15 lbs of weight that really needs to go, .and i need to self advocate better with my doctors. But, like you, the diagnosis was conflicting, but also therapeutic at the same time, cause now I felt that I wasn’t crazy, or lazy or everything was “all in my head”. It was real…now its the enemy I know. Good luck and know you are not alone…take care.

I have had Hashimoto’s for many years but have never had it explained to me other than a lot of people have it. At age 59 I am just discovering that it obviously is causing many other little problems that the doctors don’t associate with it or don’t tell me that is the reason. I have a lot to learn.

I am struggling with the Hashimoto Thyroiditis diagnosis as I have all the symptoms, but since my basic tests are considered in the normal range they want to wait… My thyroid antibodies are over 1300… All they could say is you have something… I even had a thyriod biopsy… Any suggestions of a specific type of doctor that will actually help? I am in the Northern Virginia area…

I am so sorry to hear of your diagnosis and wish you all the best. Thank you so much for all that you do. I have you on my RSS feed, follow you on Facebook, subscribe to your podcast and plan to buy your book. You have helped me so much in my continuing journey towards recovering my health. Now is the time to take care of yourself!

This must be such a difficult time for you as well as a relief but I just wanted to thank you from the heart for helping me and so many others. I discovered I had autoimmune and started researching alternatives and came across your incredible book, without which I’m not sure how I would have regained a normal life again. As soon as I followed your book, I started to feel better and I can’t thank you enough. You are a very special and corageous woman with true purpose. Thinking of you.

Hashimoto’s is the great antagonist in the story of my life. I was diagnosed 10 years ago this month. I had strong symptoms of hypothyroidism for 7 years before that. I had whispers of Hashimoto’s for 15 years before that. I have lived with the disease for over 30 years, and I am still fighting it. It is a tough enemy. Synthroid may help for awhile, but your symptoms will likely return. Synthetic T3 offers the same short-lived respite. I am now on a Nature-throid regimen, and feeling better, but I don’t know that the symptoms will abate forever. I have found that a grain free, dairy free, sugar free diet can be a remarkable healer, but the Hashimoto’s is still there. I am learning to embrace the times when I have a clear, steady mind, and running with it as far and as fast I can so that when I cannot, I have the time to recover and rest. Best of luck on this journey!

I too had all these symptoms you describe above. I went undiagnosed for years as well. Diagonosed three years ago now and on nature thyroid as well. I have your book plus isabella’s and datis’ s and following aip diet. Still the cloudy brain, moods, numbness persists. I very worried about my brain and all the other undiagnosed hashimotos cases out there. Read both of datis kharazians books.

So much of your story reminds me of my own. Your website has been so helpful to me, as I have Hashi’s and have been starting to follow the paleo diet. It has only been two weeks but I already feel an improvement in my symptoms. Thank you for sharing.

I’m also familiar with the guilt/relief combo.

Your medical history sounds rough. Thanks for turning a sh*ty situation into a fantastic resource!

Sarah, thank you so much for this beautifully written and very moving post. You give voice to so many of my feelings about my own process of figuring out that I have autoimmune disease. Relief and grief, together.

Thank you especially for the powerful passage where you take stock of the extraordinary things you have accomplished even while struggling with a disease you didn’t know you had. Your PhD, your weight loss, your bestselling book that is changing lives . . . and your beautiful family, who are blessed to have you as their health detective, nurturer, and champion. You’re setting an example of something that it’s important for all of us with autoimmune disease to do: look at our own lives and say, I did these things in spite of what I was up against.

I hope with all my heart that diagnosis will be a step towards better health and wellness for you, Sarah. Thank you for all that you do. With friendship and cheers, Jane

Thank you for this honest and open post. It is such a big relief not being responsible for the things you went through. I recently made the same experience, just on a small scale though. Enjoy this time and grow out of it even stronger.

Cheers
Silke

So sorry to hear about your diagnosis. Been there. It sucks to be doing everything right for so long and then learn that there is even more to do. Sometimes it seems like it never stops, and in many ways, as you know, it never will. But there is so much power in knowledge. And it’s a blessing to use your own story to write a new path that inspires and supports so many people. I have a similar story. In many ways my autoimmune disease (and the dozens of other diagnoses I encountered on my path) have defined me in ways I don’t regret. And regardless of the struggles, which have been really, really hard, I truly believe I’ll be healthier and happier because of my struggles. I think we are the canaries in the cole mine. I’m in Atlanta if you ever want to grab lunch. We have A LOT in common!

Sarah, I want to thank you for all you have done to help so many with their diseases. It is so very hard to continually discover another!

As I read from the Facebook Group,The Paleo Approach, I am amazed by the sheer numbers of people who have multiple autoimmune diseases. Your ability to get all the information together for your PhD and book (despite having multiple diseases) has brought hope to so many! Grief is difficult especially when you tend to be someone who “gives”.

Your book continues “giving” as my children and one grandchild have autoimmune difficulties. I am, once again, thankful that your book was published as we needed it!

As I go to my new doctor, I go with the same hesitency as when I was dx’d with MS, because she thinks I have an underlying autoimmune issue.

I know I will grieve. Please keep us posted on your process. There are many of us out here who care and who need to know you are OK.

Wow! You are such an amazing person. It is almost unbelievable how much you accomplished despite this hidden autoimmune disease. And despite the trying times in your past. Your strength and positivity are such an inspiration. Thank you for all that you do! 🙂

My daughter was diagnosed when she was in her thirties. Like many of you she suffered weight gain and was forever on a diet. She had a problem while in Florida where she could not swallow and an ER MD suggested she have her thyroid tested. Like a lot of you it came back normal but very low normal. She was always a person with great energy and began to suffer loss of energy, hair, dry skin and brittle nails. She finally pushed her primary to give her the bigger thyroid test. When it was returned, she was diagnoses with Hashimoto’s. She was told to see a well renowned MD but was told by the practice this MD was not taking patients. When she faxed her numbers, the MD called her and told her to get in right away. It took almost a year for the medication to be adjusted. She became pregnant and after the delivery of twins, suffered a huge goiter that was starting to block her windpipe. She had moved to North Central Massachusetts and did not know of any endrocrinologist. the goiter was so severe that she went to a ear, nose and throat surgeon to have it removed. The goiter was the size of a man’s fist. He recommended an endrocrinologist and because of his insistence she was seen, however, her para-thyroids are dead and not producing anything. She has to take enormous amounts of calcium in order to function and was hospitalized once for calcium deficiency. She is a poor eater and loves carbs. I am trying to get her to change her diet and hope to pick up your cookbook with the hopes that I can entice her to eat better. I do a lot of the cooking as I moved in with them after the birth of her twin boys. I hope that you continue to get better and that the discovery of your diagnoses will help you to feel hopeful in resolving your health situation.

Holy cow, Sarah, that’s huge. You’ve been such a friend to me (without realizing it!) and to all of us during our diagnoses, and so I want to offer virtual hugs to you. It’s rough.

This post brought tears to my eyes. Because I can relate. Because I know the pain & frustration. I was diagnosed at the young age of 9 and was always just told that I had a thyroid problem and had to take Synthroid to manage it the rest of my life. But it didn’t manage it, and so I simply thought all of the issues I struggled with were somehow just “who I was”. It wasn’t until I had my second child that things changed. He was intolerant to dairy, and I had to find ways to cut it out. As I researched, I found “Practical Paleo” and “Eat Like A Dinosaur” and so began my paleo journey. My whole family went cold turkey, and I started taking control of my health. I got your book – and now cookbook! – and tried to understand what was really going on behind the scenes. I felt like I was finally getting somewhere. Then my hair started falling out in patches (far more than the normal Hashimoto’s hair problems). Just last week, I finally got a confirmed diagnosis of Alopecia. The emotion of being diagnosed with a second auto-immune condition, after working so hard to beat the first one, has been almost overwhelming. And scary. Will I lose all my hair? Only time will tell. But in the meantime, I’ll fight it every way I know how, and your resources are invaluable. Hang in there. ::hugs from Coloraso!!::

Also, I know you are so educated, but if you haven’t already check out “why do I still have thyroid symptoms when my lab tests are normal” by Dr Datis Kharrazian. You’ve probably heard of it in the circles you run in, I know he’s been part of many of the auto-immune summits. Finding a Dr. who helped me balance my TH-1 & TH-2 made the biggest difference for me!! The guy I see was actually trained by Dr. Kharrazian & is quoted in his book.

Keeping your chin up!

I appreciate this post so much…especially your “victory in not knowing” line. I feel fairly certain I am suffering from something auto-immune related or I have tendencies toward auto-immune disease (which is genetic in my family). But I am not sure exactly what is going on, and that is frustrating and depressing. But I am going to take your approach and believe that as I continue to change my life and better my nutrition I will see healing and it is ok to not have a diagnosis.

Dear Sarah tank you for your books- have the two of them- they have been a real help for me. I admire you’re strength to cope with yet another diagnos.
Question: you say secondary autoimmune diagnosis often follow hashimotos for ex.
I have lupus SLE and wonder if its considered secondary?
Kajsa

I find your posts to be echos of what I have gone through and they are very moving to me! What can I say that hasn’t been said?

Strep 12 times in a year @ age 7. Put on penicillin for a year – CHECK!
Family history of thyroid issues-CHECK!
Overweight sleepy kid and teen -CHECK!
Crash diets, bulimia, and ED N.O.S.- CHECK!
Beat myself up for wrongly assuming it was my fault that I was fat so had gastric bypass and NEVER CAME CLOSE TO GOAL. What was my problem?

Finally diagnosed with Hashimoto’s, but just told to take high amounts of Synthroid… then I found…. Paleo.

I still get angry that I can’t lose the weight, but I am thankful for stopping the constant upward climb of the scale, slowing down the hair loss, Growing fingernails for the first time in my life, and less depression. All in all, I consider it a win, although I still want better for myself. Keep on trucking, we can do this!

Sarah, thank you for your transparency and honesty. You will never know what a blessing you have been to so many people. You are a source of encouragement for people who have been trying to be “perfect” and yet still struggle with major or minor health issues or will never look like a thin, ripped Paleo model. My husband goes back to the doctor today where he will get the results from his TPO antibody test. It has taken THREE years to get a doctor to run a full thyroid panel on him. Your latest post was a tremendous encouragement. We pray for your health journey and that you will continue to share what you discover with the rest of us. Hugs, ~Sandy

Oh Sarah! I am so sorry to hear about your diagnosis. I can understand how distraught you must be about it after all you have done to heal your body and all the research you have put into understanding autoimmune disease.

So much of your story is similar to my own. The weight gain and depression in high school in particular. I was diagnosed with Hashimoto’s about 10 years ago. Unlike many, I did not do well on Armour Thyroid and have felt “pretty good” on generic levothyroxine. Over the past few years though I really struggled with my energy levels and just not feeling healthy in general. I felt awful enough last winter to suspect I had all sorts of health issues going on from MS to other things. By researching how to treat MS through diet I stumbled upon your first book. I read it and as much other info I could find about diet and exercise online, especially blogs like Chris Kresser’s, Mark Sisson’s, and yours of course!

It has been about 10 months since I cut out grains and revamped my diet. Sugar is still a struggle for me, but I am working on that. Anyhow, I have felt GREAT since changing my diet, all thanks to you! I still take levothyroxine, but my blood work has definitely improved. I understand I will probably take the meds for the rest of my life, but it doesn’t really bother me. The diet changes I made from reading your book and the other blogs I mentioned really, really have helped me feel better on a day to day basis. Your recipes are some of my favorites and have helped make this transition to Paleo pretty easy. Your Perfect Paleo Pancakes are still among my favorites!

Hang in there! Please know you have helped so, so many people with your books and blog!! You will get past this stumbling block! Give your mind and body the rest it needs. You have pushed yourself so hard these past few years. Best to you!!

I have alopecia areata and was also diagnosed with Hashimoto’s; I have several nodules in my thyroid and have done several biopsies, fortunately all negative for cancer. I guess I am also lucky that so far I am not taking any prescription for my thyroid, my endocrinologist shares my idea that if I can avoid it, I should. In my family, my dad has alopecia, vitiligo and pernicious anemia, and from the three siblings I have, two have alopecia and all have some thyroid related issue, one of my sisters has been taken thyroid prescriptions for years. So, I say, we do have some issues with autoimmune diseases in my family…My alopecia is to the point that I have more bald spots than hair so about three years ago I decided to shave my head and I have been shaving it since then and I am glad I did it, it saves me so much time and worry. My two other sisters are also totally bald, so we know how to rock it!
Anyway, I came across the Paleo Approach reading about autoimmune diseases, I watched the video from Dr. Terry Wahls and I was astonished to see her improvements by switching her diet. From there I started researching more and I found the Paleo Approach book by Sarah Ballantine, I started reading it and couldn’t stop, I got my kindle edition to be able to read it at my lunch break and I also bought the hard copy for easy reference and I even got two other books for my sister and one of my friends. I started with the diet before I finished the book; I got a copy of the Paleo Cookbook by Mickey Trescott and started with it full blown, 100% committed. I must say it is not as hard as I imagined, at home we already cook daily, we don’t buy processed foods, we love seafood and meat, we eat veggies, we don’t eat sweets and one bar of dark chocolate would last us for more than a month… The most difficult part is to find equivalents for some of the flavors I love: curries, coffee, cheeses and bread…
I thought I was eating healthy before, my bread was always whole grain, I eat peanut butter after my workouts and I had whey protein, I didn’t eat sweets, my sugar intake was low, my coffee was one cup a day and I had occasional beer and wine. But I always had to eat every three hours, because if I didn’t, my headache would immediately start, always on the back of my head on the right side. I would start feeling weak, and then almost shaking. So I was always making sure I had some type of protein bar or nuts to snack every three hours. I would also have the feeling of being constantly bloated and had on occasions digestion issues that I was not able to track to any particular food.
I started the AIP protocol, it will be 5 months tomorrow, and I did it full blown, I drink a cup of bone broth at my breakfast each day, I have organ meats, I eat vegetables and fruits, I have probiotics with my meals (sauerkraut and kombucha are my meal companions now), I have seafood almost every day and I buy quality products. My breakfast has nothing to do with my past breakfast of coffee and toast with peanut butter. The first thing I noticed was that I can last between my meals without shaking and without the looming menace of a headache! It is very liberating to not having to go everywhere worrying that I don’t have a snack and my headache is going to start. I thought that stopping the coffee would actually give me headaches because of the lack of caffeine, but it has not happened (for what I am glad). I did feel sleepy during the first week of the protocol but it is much better and I still enjoy a cup of black tea occasionally.
Just the fact alone that my headaches are gone is wonderful, but I also noticed that I am not bloated after eating. I have also lost those stubborn last ten pounds. I was scheduled with my endocrinologist in November and everything is in check! In the meantime I can almost feel how my body is healing, I have energy throughout the day, I don’t have pain when my period comes, and I am not super tired the week before. My skin looks better than ever and I am regular!…constipation was kind of the norm for me before. Now that I have entered in the routine, I am struggling with the fact that my husband and I are going to visit his mom in Malaysia. I am struggling because the food there is nothing like here and everything is spiced, with soy, rice, flour… I already made plans for the long airplane trip (two 10 hours flights) but once I am there, I want to keep watch for my food but at the same time I want to enjoy the trip with my husband and food is a huge part on their culture. The last time I was there was ten years ago and I loved trying the food because is so different, now I am torn…if I eat the food on the ten days that we will visit, will all my efforts the last five months go down the drain? Will I be back to zero? I don’t know if you can help me with this conundrum, maybe you have some tips to follow so I get to enjoy there without resetting all my efforts?
Thanks so much for all the useful information that has changed my life!!

My heart goes out to you. I have found eating a cleaner diet to be hugely helpful in my own healing process. I am grateful to you for all of the research & work you have done. Your insight into your own life & the timeline of events is something I admire.

As I’ve read through this blog entry, and pondered the role that food plays in our lives, I can’t help but think we (general we) are missing another side of this. It is so EASY to get caught up in the details – be it food details, health details depending on our specific situations, you name it. That we end up limiting our ability to see the bigger picture. When my health first took a turn for the worst I began reading stories of people who healed, ‘miraculously’, from ‘incurable diseases’. They weren’t just symptom free, they were disease free. Not one of these stories, and they were from all parts of the world, spoke about how food healed them – sure, eating healthy helped – rather the turning point in their ability to re-gain health was their emotions. That lead me to read books like The Emotion Code, The Healing Code, Feelings Buried Alive Never Die, Anatomy of an Illness. And stories like “And There Was Light: Autobiography of Jacques Lusseyran”. There is something quite powerful about the human spirit, and I think we often over look this. Doctors no longer look at our WHOLE selves when they try and help us, they concentrate on the loudest screaming symptom, and then treat the symptoms. I think we need to start digging a little deeper & trying to find the cause. I feel so strongly that that is where true healing takes place, and often, it isn’t what we think it is.

Sorry to hear that, but I believe you’ll not let this disease disturb you, you’ll win again !

My thyroid tests have always been normal but I have cold hands, the daily calories I calculate don’t match my weight changes like I eat quite more, I have keratosis pilaris with some dry skin, I use anti-dandruff things, I usually have constipation, and I found latex makes my thyroid feel strange and hurting, and in an autoimmune summit I listened Dr Kharrazian say latex causes autoimmune reactions to thyroid.

So I want to know more about Hashimoto’s diagnosis, which tests shall show in what ranges for a good thyroid ?

What can be done to prevent Hashimoto’s develop besides the paleo autoimmune protocol ?

I see infections play a big part in Hashimoto’s etiology, how and what infections should a person suspecting Hashimoto’s watch for and what can be done about those infections if such a person finds he/she has it ?

Do you think EMF / RF can be causing Hashimoto’s or accelerating / adding to Hashimoto’s ?

Always following you with admiration, thank you very much

So sorry for your diagnosis. I know you said you have had this disease since you were young and the stress of writing the books caused a flare but as someone who was diagnosed at age 11, I find this very disheartening. I’m already finding it hard to stick to the AIP diet and I do get adequate sleep and do yoga everyday for stress management and work out a few times a week. But I am still not seeing weight being lost, still feeling cold and suffering from brain fog, and still lapsing into mild depressive episodes every so often. Plus I’ve got acne now worse than I ever had in my teens and I’m in my mid-twenties. Its just so sad to think that even someone who knows the ins and outs of the AIP protocol and is following them, is still having symptoms and flares. It makes me feel like, is it even worth it? Either way I seem to still have symptoms and I feel even more stress trying to stick within the AIP guidelines than I do just eating Paleo.

I know you will be sharing more info about Hashi’s now that you have it, and I can’t wait to learn more. Right now it feels like, even if we do everything right, check all the boxes, we could still be hit with a flare. It’s so frustrating

I so identify with your pain. Much of my life matches yours. Especially” “I blamed everything on my weight, and blamed myself for my weight.” I gained weight when i was 5 after having surgery and my parents ugly divorce. I’ve never been thin since even though i grew up anorexic. Even eating no food at all i couldn’t lose weight. I would eat nothing for days then break down and have a piece of fruit or a candy bar. Then I’d blame my breakdown for my lack of weight loss. I can tell you – no one throws an intervention for a fat girl who is anorexic. I once told a doctor that i was doing 2 hours of high impact step aerobics plus weight lifting plus walking for about an hour every day and only eating 1000 calories a day. what more could i do? He told me to drop it to 900. I’ve been paleo for a couple years now with growing determination and commitment. Autoimmune is very hard for me because it is even greater sacrifice of the things i actually like to eat – but i’m working towards it. I hope to be following the autoimmune paleo protocol in about a month. I’m sorry for what you are going through but i am so very thankful for the information you have been able to pass to me. Maybe i can get healthier too.

Sarah, this and the latest post about your diagnosis have been super helpful for me – a lot of my history parallels yours as well (going to bed at 8 from my teen years, knowing it was unusual, but not having a choice if I wanted to be functional!) Through the guys at SCD lifestyle and SolvyingLeakyGut, I’ve been listening to and reading your stuff. Thank you for your work!

Here’s my real question. Has anyone in the real food community taken a good look at iodine? We all know that iodine is connected to thyroid health, that both too little and too much are harmful. Some of my amateur research is suggesting that our population has a chronic iodine deficiency, that iodine can be supplemented at 50x the FDA RDI for acute treatment/balance restoration and 12.5x the FDA RDI for sustained long-term health. Many of us who are using non-iodized (real) salt in our diets probably get less than the FDA RDI, which is already suggested by some as being far too low. And that people who had negative effects from too much iodine were consuming levels more like 200x current FDA RDI, and that a faulty Brazilian study caused much of the scare that caused the health community to move away from iodine therapy in the 1930s & 40s?

I’ve started eating a lot of sea veggies and fish stock made with fish heads (including the thyroid gland) and have noticed within a few days that my eyebrows are growing more than they have in years. Could you look into it? Or maybe you already have?

Thank you! For your fight and all of your work!

I read this post last week. I listened to your podcast on my drive to Dr Flowers this morning for an initial visit. I am beyond blessed for the information you present that is helping me find answers to what has effected me for 20 years. I pray you are better soon and please realize that sharing your illness is hard but you are impacting lives daily! Thank You!!

Thank you so much for writing this. It’s exactly what I needed to read right now. I’m really struggling but you’ve given me hope.

I am driven to tears every time I read/hear you talk about your recent diagnosis. I cannot imagine what you are going through, and I am so appreciative of your openness and honesty. Thank you for being real with us, and for allowing yourself to be vulnerable. You are doing so much for this community. Thank you.

Is fermented yogurt bad? Instead of regular yogurt?
the ingredient list is: fermented milk (lactobacillus bulgaricus e streptococcus thermophilus) , cream.
I know dairy is an issue almost as bad as gluten but since we should be eating fermented foods, I have doubts on whether this could have some benefits or if should avoid it like other dairy products.
Thank you for all your work, I have hashimoto’s thyroiditis too (since I was 14) and I hope you start getting better.

Dear Sarah,

I would first like to thank you for all your extensive research, articles, books, podcasts & website. I have personally benefited from the hours I have spent reading and listening to you. Your information is invaluable and a generous gift to all of us living with an autoimmune disease.
I was diagnosed with Hashimoto’s Thyroiditis back in 2012 and it’s been a long journey in recovering my health. I can relate to what you are going through. As a fellow Hashi, I would like to share with you what I have learned. My doctor (who is an MD and Naturopath) has me on selenium. The selenium has helped me lower my numbers. I wanted to bring it to your attention because it may be something to speak to your doctor about.
Iodine supplementation is a no-no for people suffering with Hashimoto’s. Iodine has been found to be beneficial for those with a thyroid condition except when the thyroid condition stems from Hashimoto’s. Then it has been found to have adverse effects, destroying the thyroid further.
I read in your post that you were going to make some changes in your life to help you deal with your new diagnosis. Reducing stress with meditation, yoga, adequate sleep, good hydration are all important. Exercise is also something that I find beneficial but in the right amounts. The right amount is the point to focus on.
I am a Personal Trainer. I have been a trainer for the last five years. You can imagine my own frustrations with being physically active in my professional yet unable to maintain a reasonable body weight. I trained 5 to 6 days a week. Weight training, cardio & yoga. All the exercising I did left me exhausted, depleted, fatigued and frustrated. Then I came upon an article on exercise & Hashimoto’s. Apparently women suffering with Hashimoto’s reach their adrenal burnout much faster than the average person. Working out 5 to 6 days a week was toxic. I was reaching adrenal fatigue daily with my workouts. I had to step back and rearrange how I approached exercise. I now weight train only 2 days a week instead of 4. I do HIIT (High Intensity Interval Training) cardio 2 days a week. Normally a half hour on the elliptical and a spin class. If I am feeling up to it, I will do a half hour to an hour of yoga on my active day off. Finding the right balance with exercise is crucial to living healthy with Hashimoto’s Thyroiditis. I wanted to share this with you in hopes to spare you further fatigue. I noticed that you mentioned you were walking 4 to 5 miles, daily. I don’t know if that will benefit you based on what I’ve read and my own personal experience. Cutting back may be the best approach, at least for right now. This may sound crazy, but once I cut back on the exercise, I started to lose weight, gain energy and gain strength. I started to feel better. It was the best thing I did for myself.
Considering all that you share with myself and others, I had to share this with you. Again, thank you for all that you do!!!!

I was also diagnosed with hashimotos about six months ago and have made many of the changes you discovered … Selenium, cutting out iodine, adding yoga and sufficient hydration. But curious about your research on exercise in that I currently run 3x week and do resistance training plus HIIT 2x week in addition to yoga. Since I’m implementing many of your other changes, I’m curious where I can find the article you referenced regarding exercise hashimotos and adrenal fatigue, I’m extremely interested.
Thanks for your comment … This article was a fantastic read for me in relating to the discouragement combined with relief in the diagnosis.

Hi. Thank you for sharing your story. I have begun this journey to diagnosis however, I have to direct it at every step with my doctor. Can you share how MUCH selenium you are on? And are you taking bio-identical hormones, half t3, half T4? Anything else?

Hi sarah
I too was just recently diagnosis with hashimotos. I have also been on the aip diet for over a month now and tolerating it well.i thank god every day that i found your info on the web!
My question for you is my md would not start me on the armour thyroids med since she thought it would increase my antibodies. Have u found any research to support this or not?
thanks sonja

I’m new to your site, so forgive me if you have already discussed this. Is your arthritis due to your psoriasis? I have psoriasis on my face and scalp (have for many years), but recently I have been experiencing joint aches in my hand and knees. Not sure of it is the onset of arthritis, and if it is due to my psoriasis.

Psoriasis is an autoimmune and psoriatic arthritis is related. Not everyone has the arthritic component but it sounds like you do.

I just have to write about this. I’ve had thyroid disease and celiac for years and have done a tremendous amount of research on thyroid disease. (I have a science background and read journal articles). Hashimotos and Graves actually start in your teens. There was an excellent paper on this in Werner and Ingbar’s “The thyroid”, I think from the year 2000. The gland had great excess capacity and the ability to continue to function when the disease is in progress and the problems generally are not seen until the woman gets in her 40’s, when the gland finally has too much damage. So, my point here is that “Paleo Mom” already had Hashimotos long before she went on the diet and the diet probably actually helped keep antibodies lower and extend her time before needing medication. Also, older studies found that some people could go off thyroid medications after about 11 years, but this percent of total was very small and most of the time the immune system, once gone awry, does not ever unlearn to attack the thyroid and other tissues.

Tish

Sarah/Tish – this is exactly where I am. I have been a hard-core gym enthusiast (even competing in figure competitions in my 30s) and have been eating Paleo before Rob Wolff was a household name, and before that was on Atkins – all since 1998. Paleo has made me feel great and I think that going paleo has probably helped to stave off this problem for a while, but at 43 (and exhausted) I’ve been diagnosed with the disease. I’d like to think that Paleo will “save” me as so many people claim, and I’m even on the Whole 30 right now, but I feel like I will have to try the meds. And, I feel guilty about this. Everyone talks about Paleo as the panacea for the world’s health problems, and I feel as though I failed. Sarah stopped this post without ever giving any indication of her next steps (or maybe I need to read a few more posts…?). Are meds next steps? Am I not giving Paleo enough credit and just need to be even more restrictive? I am feeling defeated and although I’m so happy to have stumbled upon this post to know I’m not the only one, I would love some feedback on taking meds. Thank you both for your thoughts! I feel more enlightened, if not still defeated.

I was diagnosed with Hashimoto’s 14 years ago at age 50 and fibromyalgia at 54.. For me I believe it was the result of leaky gut syndrome, which I was diagnosed with at age 43. Over the years following the leaky gut diagnosis, I would eat what I was sensitive to on and off, especially wheat and milk, sometimes for months at a time and would clean up my diet when symptoms reappeared. Other gluten containing grains I was not sensitive to were also in my diet. If I had gone Paleo at age 43 and stayed with it, I might have avoided developing Hashimoto’s and fibromyalgia.. However, 20 years ago there was not all that much information out there about using Paleo for leaky gut, although my allergist did suggest it, I found it hard to follow. But eventually realized it was where I had to be. Still, I didn’t stay the coarse. The holiday always did me in. Traveling for work was hard. Co-workers bringing in foods not Paleo…. the list goes on.

Gluten is cited as a possible culprit in causing Hashimoto’s in people with leaky gut. Gluten also has been shown to aggravate Hashimoto’s once it has developed and cause further damage. Discovering this info this year has made me realize I just can’t have grains. I would like my thyroid, what’s left of it, to survive.

However, it is what it is. I’ve eaten Paleo on and off for a number of years, and always do better when Paleo. So this year, I have vowed, no more grains or milk. Yes, it’s a challenge to have to pay so much attention to my diet. But I look at it as an expression of self love. The hardest part is the social aspect. The holidays in the past have always done me in. No more, I will stand strong and not eat that bread! or pie! or stuffing! I will prepare and bring dishes to the feasting that I can eat.

When on Paleo, my synthroid dose goes down. I accept I’ll always have to take synthroid. Taking selenium also seems to help. Taking SAMe for my fibromalgia has kept me symptom free. However, I feel there is hope in healing my leaky gut once and for all. Staying the Paleo course is the only viable solution in my opinion.

And yes…. I grieved too Sarah. Especially for pizza and Cherry Garcia ice cream. These days I look at them as delicious poison…. I accept that I am now… a cavewomen!

Today, just a few hours ago, I was diagnosed with Hashimoto as well. I am still shocked, but have been suspecting it for a year now. My previous doctor just gave me L-Thyroxin to treat my hypothyroidism. Still got worse and the dosis had to be doubled. He refused to check for Hashimoto. I changed the doctor and went to a specialist. Now I got the proof. I need to come to terms with this. Sucks, I am in my late twenties :-(.

I’m right there with you! I was diagnosed just under a month ago and am 28. It’s devastating, but I keep reminding myself that the sooner I start the lifestyle interventions, the better off I’ll be in the long run. Better to know now than to have our health deteriorate into our 40’s and 50’s. I begin full implementation of the Myers Way and AIP this Sunday. I also started a low dose of WP Thyroid 3 days ago. My mood has already lifted and I’m eager and hopeful for what’s to come!

I feel for you and appreciate you sharing your story and grief. I have most of the same symptoms, but my diagnosis is Lyme Disease. From what I have read, it seems there are many Chronic Lyme Patients who end up with autoimmune and thyroid regulation issues, including Hashimoto’s. If you haven’t already been tested for Lyme Disease, perhaps that is something you also want to discuss with your doctor. Wishing you the best in your healing.

Sarah, first I want to thank you for sharing this. I was diagnosed with hypothyroidism this past summer along with hyperpermeable gut… which I am starting to think might me misdiagnosed Hashimotos.

In researching books to get, other than yours which are already on their way, I found this and was wondering if you had read it and if so what your thoughts on it were. “Hashimoto’s Thyroiditis: Lifestyle Interventions for Finding and Treating the Root Cause”

Thanks again for ALL your work! I love your blog and recipes. 🙂

Thank you for such an honest account. I have been put into the ‘too hard basket’ by many in the medical world cause a whole raft of bizarre symptoms. I can imagine while there is grief in finally having a ‘diagnosis’, there is probably a great relief. Do you have a naturopath that you recommend that specialises in autoimmune conditions? I’d be very grateful as I’m desperate for some support and someone who isn’t going to give up. Many thanks!

What did your Dr. give you for your I.V.? It was for joint pain. I’m a Hashi too, but I can’t find any relief for terrible knee pain. What company supplies the supplements you use? Many Thanks I just found your site.

Wow, you really hit a nerve when you said, “at 10” you started puberty. I too started my period at 10 and really was never the same. Weight gain off and on, emotional issues, even issues of “nuttiness” where I was always unstable. I evened out after I got older. I believe I am suffering from Hashi’s now, my throat has been “constricted” I always thought I had thyroid issues, but it’s been about a year since I am convinced I have Hashi’s.

Another fantastic post, thank you for all you do to help, and thank you for all the knowledge you share !

I was wondering if you had a chance to review the PHD website’s recent post concerning red meat consumption and autoimmune disease. do you have thoughts ? Should we stay away from mamalian meats if suspected or diagnosed autoimmune disease ? also, will my all time favourite bone broth from grass fed beef and lamb be off limits? as well as yummy lamb liver pate ? just the thought of giving that up makes me sad.

Thanks again for everything you do !

I have Hashi’s too, and think I have had it for most of my life. If you have not been told to take Selenium, I would urge you to investigate this supplement to reduce your antibodies. I started taking 200mcg of Selenium daily and my antibodies went down 200 points. Hashi’s patients seem to need selenium. I also just found out about the MTHFR mutation from MTHFR.net, which is something else that hashi’s patients seem to have (we cannot get rid of toxins easily). I am now taking Dr. Ben Lynch’s Active B12 with L-5-MTHF from his Seeking Health website (also on Amazon). You can’t just take any B vitamins, and taking folic acid is actually not good for you, so you should NOT take it (per Dr. Ben Lynch). Please google Suzy Cohen’s article “Methylation Problems Leads to 100s of Diseases” to learn more. Of course, healing your gut is important too (most Hashi’s patients have leaky gut and don’t even know it). Stopping gluten is a must, and although you may not be an official celiac patient, you probably are gluten sensitive. Stop eating gluten and this will help lower your antibodies too.

Great post! it is so good to here everything not just all the shiny bits that is mostly presented to us through the media and other social media. I think it takes a lot of guts but what you are giving us is much more valuable!
Question on Galactorrhea: are there other causes other than thryroid dysfunction? I have had it between my pregnancies when not nursing for nearly a year and have it again, weaned my youngest 2 months ago. I also had crazy oversupply and was never able to feed both sides together.(felt lopsided and completely uneven!) Dr says high prolactin is prob cause but no solutions for me other than pharmaceutical. I don’t really understand the mechanism therefore unsure how to proceed. Cheers, Natalie

I feel as if I just read my own story. I have fought for answers for so many years. Down 140 pounds and still fighting for energy and answers I’ve begun to feel as if this is the best it will get. Chronic fatigue. Having to take naps. Coffee to stay alert. It was always that way but lately it’s been incredibly bad with the stresses of work tearing on me. My fibro and migraines have been horrible. Paleo and an hour of exercise daily. It’s still a struggle. Thyroid test always negative although I did have a borderline one at one point. They never run the whole panel. Recently recovering from Lyme’s. Chronic abdominal pain since having my gallbladder removed last year. They keep missing the boat. Who do I see and how do I get them to listen to this? I’ve had PCOS since I was a teen. So many of your symptoms are right on target. I’ve recently been told I’m gluten intolerant and now I’ve been told to stay away from the nightshades. I also have other food allergies. I’m very frustrated. I want to be healthy so that maybe after over five years of trying my husband and I can finally conceive naturally. My doctors are beginning complacent because I’m doing everything I should diet and exercise wise. I’m not getting better. Please help!

You have described my life from age 10 on as though you are me! Trying hard not to cry….angry, frustration, grief,relief and comfort were found here today! My Dr. Is going to be seeing this ASAP!

Thank you!!!

Thank you for sharing this! The month I was diagnosed was one of the worst I remember. I’d been gaining weight, despite eating right (mostly protein, fat, and green things), I was exhausted, in constant pain – later dubbed “probable fibromyalgia”, and was just miserable. Getting my diagnosis “should” have been a relief. It “should” have been a victory! AH-HA! I am NOT just a weak willed fat person! I am NOT a hypochondriac! My symptoms ARE REAL! It didn’t feel like that for a long time. Months later was when I got that feeling.

The early reaction to my diagnosis was depression, deep and dark enough that I was sent for immediate grief counseling. Sounds odd, right? To be so angry, frustrated, and sad to be validated. My feelings were more along the lines of, “All of that effort was wasted. All of the 5am workouts, the dieting, the self blame… for NOTHING?” and the betrayal! How could MY OWN BODY do this to me? Why didn’t I know?

Over a year later, with proper meds, great TSH, T3 & T4 levels – it’s easy to look back and see that a lot of that was the disease doing what it does. Depression, pain, and fatigue do a number on the human brain. They cripple it, really. So when something big does come up – you can’t even prepare to deal with it. That much stress makes it impossible to cope in a healthy way.

Thank you for sharing your story – it’s good to see that other people went through that phase and recovered.

I am more interested in hearing about the th ings you weren’t able to do. I too have been recently diagnosed with Hashimoto’s. I have been an active go getter my entire life. I have a masters degree, a full time career and I run my own business. I’ve achieved many outward things – similar to your professional accomplishments. Its the private life things that have changed for me. I use up my energy at work. My home is a disaster. The lack of cleanliness and organization is a daily stress. I only have so much energy. I spend it working, cooking and researching my diagnosis and lifestyle management techniques. My floors are dirty. My table is full of mail and bills that I just don’t have the energy to deal with. My functional medical approach is providing some health relief, but its financially draining. I avoud family and friends in order to sleep amd recharge. I am not the energetic, full of life, live life in the fast lane person anymore. I’m not sure I will ever be the same. So, I ask you kindly, share the things you weren’t able to do. The things you might be embarrassed or ashamed to tell others you weren’t able to accomplish because you just couldn’t.

I really enjoyed your article, and it’s interesting to see how similar our situations were.

I just got diagnosed with Hashimoto’s, and I too believe I’ve had it for a very long time.

I never spoke of the symptoms, just because I though they were normal (depression, Eczema, fatigue, you name it).

I too hit puberty at 10 and stopped growing then, but it seemed normal as I was already 5’6. I never thought that it could be related, but what you say makes a whole lot of sense!

Thanks for the article!

Hi Sarah,

I am sorry to hear about your diagnosis. I suffer from Hashimoto’s and your book ‘The Paleo Approach’ has been a great resource in my own healing journey. I believe that the diet & lifestyle changes I have made has slowed the progress of my condition. I do get flare ups when I fall off the wagon or in between life stresses just like anyone. I guess that is part & parcel of having a chronic illness but it is possible to live a better quality life by making changes to the way we eat, think and live. Medicine alone will never be the answer. Thanks for all that you do and inspiring others to be the best they can be!

Nirmala

I wish I could say the same was true for me. I weigh 117 lbs, am 5’5″ tall. I sleep 8 hours a day. My skin is soft. My hair is not falling out. The only “symptom” I ever had was depression. I was diagnosed with hypothyroidism because a psychiatrist thought I might have it. After starting medication, I put on over 50 lbs, my skin got dry, my hair started falling out, I could not get enough sleep, and my depression worsened. For the next 18 years, I felt horrible all the time. Finally, I started a Paleo diet and stopped taking medication due to the fact it was synthetic and contained fillers I didn’t want in my body. I tried Armour Thyroid (which also has the fillers) and I had horrible symptoms of headache, insomnia, and leg pains that were unbearable. So I stopped taking medication altogether. My TSH at this time was 119.4. After 2 years of no medication, back down to my “normal” weight of 117, soft skin, plenty of rest, and my hair no longer falling out, I went to the doctor. My TSH was 74. Obviously, my doctor wants me on medication, even though I have no symptoms of hypothyroidism. I did ask her to check for the antibody, so now I know my hypothyroidism is autoimmune. My fear right now is myxedema coma. I have started taking care of my school age grandchildren and I worry about being exposed to a disease that could trigger myxedema coma as I have untreated hypothyroidism. I am not looking forward to taking medication again as I had multiple symptoms that I do not otherwise have. I feel cornered. I feel there are no alternatives. I know I’m upside down in comparison to everyone else so there are no answers. My doctor kept shaking her head because she could see I did not have symptoms, but lab tests don’t lie and In her teaching, I must be treated.

Hi Sarah,
thanks for your blog and especially your writings about your struggles. This week I went to a doctor who told me (knowing about Hashimoto since 1/2 a year) that from the thyroid’s volume he could tell how long the disease is there, most probable. While I thought in my case it’s there since my first or my second pregnancy (my oldest son is 4, my youngest is 16 months), he diagnosed that I am having Hashimoto since 10 to 14 years already. This is the first time I heard about being able to tell… I am living in Germany. Do you know such methods as well in The States?
Cheers,
Franzi

You continue to be an inspiration to me and countless other people who have read your blog, books or listened to your podcasts. I admit unabashedly (b/c I’ve heard you apologize for the early podcasts- love them!) that I recently went back and listened to A.L.L. of the Paleo View podcasts. I seriously felt like I was attending Paleo View University and it was awesome! I learned so much so I thank you for that. Ironically, I’m now starting to wonder if Hashimoto’s is my undiagnosed primary autoimmune disease, too. And that’s how I ended up here today. I’ve had years of ‘normal’ thyroid tests but they keep testing every year since I have so many of the symptoms and am at higher risk due to PCOS. Thank you for posting the early and later symptoms. I have all but one of the early symptoms and but one of the later. Egads. I also stopped growing and got my period at 10. While my doctor thought this was early, my mom was the same size (4’11”) and got her period at 9 so they thought it was our ‘normal.’ She has ALL the symptoms of both early and later symptoms listed! I gifted her The Paleo Approach. 🙂 Since all my doctors have only tested T4 and TSH, I’m going to request they run the full thyroid panel at my appt in November. Thank you, again, for educating and empowering us all!

Thank you for posting this. Recently diagnosed with hashimotos, I also grieve. Thanks for normalising it. I grieve for the life I could have had. I’m frustrated at the long hard battle just to get through every day and succeed in life. It would have been so much easier with this diagnosis & treatment…and to think of what more I could have achieved. The silver lining is that I now have the diagnosis and that there are so many people willing to share their stories. And yes, in a way, the silver lining is the resilient person I am today as a result of suffering from hashimotos for most of my life, I suspect. Thanks again for sharing!

Sarah,
I did not have time to read through all of the comments. I have Hashimoto’s too. Did you go on any medications? So far I have elected not to but and try to control it with my diet. For the last 9 weeks I have been Gluten, soy, egg and dairy free. My TSH went from 4.59 to 2.8 just from the diet. I have not been as tired and my headaches have gone away. However, I still feel extremely cold at times and not sure if the hair loss has really improved. I’m just wondering if I can maintain this long term with diet or should I go on a medication.
Thank you for your time.

Hi Sarah,
I am totally sharing this article with my husband! I can’t believe someone wrote about the grieving process that was such a necessary step in the Hashimoto’s journey! I’m 3 years in to my Hashimoto’s diagnosis, and today I saw a new doctor for the first time, which is what led me to your website on Paleo (which I will be beginning shortly, like it or not). It’s funny: I had to fill out a 12-page questionnaire for the Dr., all about my health history, but I left it wishing there was a page for the “gifts of Hashimoto’s.” Because there are many gifts that come with going through this, not the least of which is: I have learned to not look at my weight as the ultimate goal or barometer of my health. I’ve learned to do good things for my body because they are good for my body, not because it will get me into a 1-digit dress size. It’s very freeing that way! Anyway, I anticipate this will not be my first stop at your site. Thanks for this space.

What do you consider to be a “normal “TSH”? I have been a 4 or 4.5 for years but my physician(s) through the years say that’s borderline (in Canada) and not enough to treat. Meanwhile I continue with the fatigue, all my body hair (except for on my head, thankfully) has fallen out, puffy eyelids, bad acne (for an almost-60 gramma) ..

This article reminds me to have peace with where I am at.
I don’t have a diagnosis and probably never will.
I am ok with that.
My plan is to put my symptoms in remission and have a high quality of life and health depending mostly on making wise dietary and lifestyle choices. To do that, I don’t need a label or a diagnosis. Or at least I hope not. My auto-immune only appeared 3 months ago. I am still on the maximum dose of prednisone.

On the other hand, if there is a chance to get a diagnosis, I would take it in case it would allow me to use that information to better counter the disease.

When I had rapid onset, with a large flare of inflammation in multiple areas of my body, at least I was not called a hypochondriac. The best guess was an infection(s) that was about to abysses, but after 6 IV antibiotics in a half day didn’t touch, we decided to risk a cortisol shot.
I appear to probably have some form of vasculitis, but after a few blood tests came back negative when the Doctor was checking for specific diseases, we decided to just treat the symptoms.
I am hoping that following an AIP diet and getting enough sleep will allow me to start tapering Prednisone off and, hopefully, I can bring this into remission.
Even with an AIP diet and maximum prednisone for a couple months, I usually don’t get more than about 2 days without a flare up.

I recently started to worry that I might have a hypothyroid condition when I was really struggling to lose weight. I went to the doctor and my TSH was mildly elevated (3.74). The results of my TPO antibody test were 11 iu/ml. (My free t4 and t3 were on the low end of the normal range.) While the TPO antibody result is certainly in reference range, there are some that report that anything above 9 iu/ml is Hashimotos. Should I be worried about my result? I can’t seem to get a straight answer from anyone.

Thanks for your time.

Thank you for this article. I was diagnosed last week, but because there is medication for this, no one that I have reached out to(friends & family) has taken this seriously. I’ve read everyone definitions and tried to explain how this effects my life. How can I get the people around me to really understand the seriousness of my thyroid issue??

Omg…58 just diagnosed with Hashimoto’s after a lifetime of issues. Was diagnosed with Grovers Disease 2 years ago and still no one checked my thyroid anti bodies. I literally have had every possible symptom of Hashi’s over the years but each doctor just looked at their picture and not the big picture. Listen, I am kinda glad it has a name (although not a real tangible diagnosis to me) but doesn’t exactly make me physically feel any better. I am writing to just add that weight loss is also a big indicator. I have plummeted many times over the years and believe me it doesn’t look healthy. This is also something to watch for in symptoms of the disease. Anyway, great article and thanks to the whole Hashi community for your info and support.

Omg…58 just diagnosed with Hashimoto’s after a lifetime of issues. Was diagnosed with Grovers Disease 2 years ago and still no one checked my thyroid anti bodies. I literally have had every possible symptom of Hashi’s over the years but each doctor just looked at their picture and not the big picture. Listen, I am kinda glad it has a name (although not a real tangible diagnosis to me) but doesn’t exactly make me physically feel any better. I am writing to just add that weight loss is also a big indicator. I have plummeted many times over the years and believe me it doesn’t look healthy. This is also something to watch for in symptoms of the disease. Anyway, great article and thanks to the whole Hashi community for your info and support.

I am 41 and have battled my weight my entire life. Anemic in 8th grade, lactose intolerant in college… always tired and fat and always scratching my head thinking, why? I was lead to a naturopath four years ago and was told to go gluten free. Dx with Sjogrens shortly after, I gave up dairy, eggs, and meat. Recently went through losing my brother and brought on a bought of stress: gained 20 pounds in a matter of weeks, exhausted and depressed. Dx with hashimotos. I just purchased your book and I am going to start eating meat again. Through my life I always knew there was something just not right… and it takes that special Dr. to really dig deep for you. I began T4 2 weeks ago and the inches came right off. Lost three pounds and I am sure it’s going to be a slow loss…. I am ok with it because I feel so much better! Clear head and I can actually function. Cold hands and feet are going away… I suspect my 11 year old has this crappy disease too. She battles her weight and it is very upsetting to watch. I cannot wait to get your book! Many thanks!

Dear Sarah! I am big fan of your book!

No grief! This is your challenge, your possibility to reach the next level. Sure, you will find something, which will be useful for you and for whole autoimmune community.

“A central misconception of today’s holistic culture is the belief that all illness results from personal negativity, either from tragic past experiences, from negative attitudes that contaminate our minds and bodies, or from bad past-life karma. Yet negativity is not the only source of illness: It can also emerge as the answer to prayer. It can physically guide us onto a path of insight and learning upon which we would otherwise never have set foot. It may be a catalyst for expanding personal consciousness as well as for understanding the greater meaning of life.
As terrifying as disease is, it is also an invitation to enter into the nature of mystery. … ”

Book: Why people don’t heal and how they can. Caroline Myss, PH.D

I have MS, and this generally is my attitude. Surprise package! It definitely will lead to something good.

Best wishes and personal dignity 🙂

I have been fully AIP for over 3 months. During that time my lupus flared at the same time I started losing weight without explanation and had stomach pain. I went to the doctor and asked to have my TSH tested even though it hadn’t been 6 months, yet. Sure enough my TSH had switched from being high 6 weeks before to very low. I asked about Hashimoto’s, was tested, and the results were positive. Like you, it was depressing to learn of my third autoimmune disease (I was diagnosed with lupus and Sjogren’s over 3 years ago)–but it was actually my first, having been on thyroid medication for over 16 years. I didn’t know about Hashimoto’s at the time (my sibling was diagnosed with it a couple of years ago). I think there may be something missing–an underlying infection, perhaps, or candida or sibo–because so far, only my GERD has improved on AIP–not my lupus, Sjogren’s, or Hashi’s. I wish I knew which additional avenue to pursue. And what the best resource on Hashi’s is.

So your autoimmune protocol doesn’t work in fact??! Yes it’s impressive that you lost so much weight and have had some success with your other issues but if you have been eating this way for so long and have continued to develop Hashimotos, which I can only assume you will have to treat with conventional medicine, well then what’s the point?! Surely this is actually evidence that contradicts everything that you propose in your books and on here?!
I don’t mean to be a troll or purely negative but I am seeking a real solution for autoimmune disease that doesn’t increase orthorexia, something that is a real risk with the restrictive measures that you suggest!! Now you tell us that despite all your paleo methods and your “knowledge” in the area you have developed another autoimmune disease? 1 – I am very sorry to hear this and I appreciate that you have been honest about it but 2 – this is very concerning for those looking to treat thyroid autoimmunity with your methods

Leave a Reply

Your email address will not be published. Required fields are marked *