Grief Upon Diagnosis: Uncovering Hashimoto’s Thyroiditis

January 10, 2015 in Categories: , , by

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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 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

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