I have Hashimoto’s

This post is the first in an ongoing series; view more recent related posts.

I had intended to write a post for Thyroid Awareness month (which was in January).  I thought it would be important to share my experience, with the hope that others would get the help they needed way sooner that I did.  But, if nothing else, this disease is teaching me to manage my own expectations about what I can do.  So, it took me four months longer than planned to get this written.  That, I’m learning, is my new reality.

On my birthday (In October) last year, I was diagnosed with Hashimoto’s Thyroiditis.  If you know anything at all about the thyroid and it’s role in human biology, you’ll understand why I’ve been largely absent online.  The thyroid controls the most basic functions in the body at a cellular level; when it’s not working properly, nothing in the body really works as it should.  Body temperature, digestion, basic cell functions are all affected.  I didn’t even know where the thyroid was located – much less what it did – until I was diagnosed.

In the past week or two, I’ve spent some time revisiting and cleaning up the contents of my website.  In doing so, I realized it’s been a year since I posted anything. I’ve never had that kind of lull before! But it’s been a really tough year, and I realized the only way I could start writing again is to be transparent about where all my energy and attention has gone. If I’m going to write again on this blog, I need to be able to talk about this; it’s the locus of my personal attention at the moment.

What is Hashimoto’s Disease?

Hashimoto’s is an autoimmune disease – one of growing number known to scientists.  It’s estimated that nearly 50 million Americans (that is one in five!) are dealing with autoimmune conditions, compared to cancer (9 million) and heart disease (22 million).  Autoimmune conditions are by far the largest health issue the United States is facing today.  And yet the National Institutes of Health (NIH) spend less than 3% of their budget on related research.  And yet now it’s understood that many of these autoimmune diseases share an etiology (cause of the disease), so a focused research effort could make a huge difference in the lives of Americans today.  Yet, there is very little funding for research that cuts across medical specialities, and that research doesn’t seem to address the emergent understanding from the patient population about the importance of diet.  In fact, many pharmaceutical companies are racing to find treatments, while our education of doctors (and therefore the treatment of patients) lags far behind.  Today’s doctors take less than one credit hour of education on nutrition. This is in spite of a growing body of research that connects processed foods to autoimmune disease.  Dietary changes have been shown to halt, reverse, and even put autoimmune diseases into remission.  You can read more of those stories by searching for Autoimmune Protocol (AIP) recipes online.

One of the reasons I felt particularly compelled to make my experience public is because an estimated 75% of those with autoimmune conditions are women, and 90% of those diagnosed with Hashimoto’s are women.  And 45% of women who approach doctors describing symptoms like mine are handled dismissively, and told that what they’re experiencing is in their heads, or that their fatigue is the reality of being a working mom.  As a result, as many as 60% of people suffering are undiagnosed.  Furthermore, as endocrinologists turn their attention to the explosion of diabetes in America, there is only one endocrinologist for every 25,000 patients that need their help.  We cannot expect such a small population of medical specialists to attend to thyroid conditions on such a massive scale, and most other doctors don’t have sufficient knowledge or training.

The challenge with conditions like Hashimoto’s is that you will never put the disease into remission without treating the underlying causes of autoimmunity.  You can take a pill (lots of them, actually!) to bring thyroid hormone and vitamin levels in balance.  But the body never fully heals with pills alone.  In fact, people with one autoimmune condition are three times more likely to develop another one.  Or several other ones.  And one specialist doesn’t have broad enough knowledge across the affected systems of the body to help patients on that healing journey.

If you’re not that interested in my personal experience, you may not want to read on.  But if you believe – as I do – that this is a national health crisis, please take the time to read about my experience, and how I’ve started my healing journey.  Hopefully you can help someone in your social network avoid experiences like mine, which (as evidenced by the dialogue and doctor-bashing and more doctor-bashing on patient support communities) are all too common.

My experience

It took me 5 years and 15 doctors to get my diagnosis. No, I am not kidding!  And what is awful is that many, many other women struggle not only to put a name to their experience, but to get the medical guidance they need.

After the birth of my second son in 2007, I developed severe post-partum depression.  It crept up on me and on my little family, and it was insidious.  I gained weight that I couldn’t lose, and I felt like I was walking around in a fog.  In talking to doctors, my obstetrician told me to have more sex and that I’d be fine.  My general practitioner heard me and recommended Prozac for what she diagnosed as PMDD (like PMS, but worse).  I felt some improvements in working with an acupuncturist, but not enough to really pull me out of the deep pit I had fallen into.   He did say (as other Chinese doctors did later) that I looked blueish-grey (the color of a corpse), and that I ‘had no chi’.  In the tradition of Chinese medicine ‘chi’ means breath, or life force.  I definitely felt like my life force was draining away, and I was starting to wonder if it was just the reality of middle age, or of being a working mom.

In retrospect, my experiences at work didn’t help. I was working across four different time zones, and coping with the demands of managing a large team.  Two weeks into my maternity leave I was taking phone calls from team members who were panicked about a massive organizational restructuring.  In the end, I absorbed all that stress at my own expense.

I thought a new job would help (and it seemed to at first), but as the excitement a new job and the cross-country relocation subsided, I realized I was still not back to normal.  Another gynecologist, another couple of GPs, another acupuncturist … and on and on.  Never once in those five years did any medical practitioner mention my thyroid.

In retrospect, there were such basic signs.  I had always been naturally warm, but in the past few years my body temperature at the doctor’s office was always around 97 degrees.  It was not normal and I should have said something, but I was too damn tired to connect the dots from visit to visit.  That one kills me, though.  I know people have different normal body temperatures.  But it’s such a basic measure, between my complaints about fatigue and weight, why wouldn’t any doctor have taken a closer look at my thyroid levels?!  My thick hair was rapidly turning white, thinning, and falling out.  No matter how I ate or exercised, I was unable to lose weight.  I had always been a morning person, but now (no matter what time I went to bed or what kind of evening routine I put into place), I just couldn’t get enough sleep.

On my own I started to read more and more about mid-life health issues in women.  I went gluten-free (in May of 2013), and I did find that my regular migraines almost completely disappeared.  That was a huge improvement for me, as I was experiencing crippling headaches so frequently that I was carrying a bottle of extra-strength Excedrin around in my purse.  I remembered that I was diagnosed with polycystic ovary syndrome (PCOS) while trying to get pregnant years earlier, and I learned that a diabetic diet was recommended.  I started eating a low carb diet (you can read more about that experience here), tracking my food in detail, and exercising.  I didn’t lose a pound, and I just got more and more tired.

But by that point, my new normal was going to bed between 8-9 pm with my kids, struggling to get up at 6 am, and taking 2-3 hour naps on the weekend.  I was in my early 40s, but I really felt like my life was over.

Last year, after sharing my food and exercise journal with my gynecologist, she finally referred me to an endocrinologist.  I had made significant changes to my food and was walking 3-4 times a week, but still hadn’t lost any weight.  I waited five months for my first appointment, but the labwork revealed a diagnosis of subclinical hypothyroidism, or Hashimoto’s.   I also had a number of nutritional deficiencies that are common with Hashi’s, including low B vitamins, low Vitamin D, and low Magnesium and Magnanese.

At the time I was so hugely relieved to have a name for what I was experiencing!  The symptoms I read about online matched my experience exactly.  Here’s how Hashimoto’s is described was described on Wikipedia at the time:

There are many symptoms that are attributed to Hashimoto’s thyroiditis or Hashimoto’s disease. The most common symptoms include the following: fatigue, weight gain, pale or puffy face, feeling cold, joint and muscle pain, constipation, dry and thinning hair, heavy menstrual flow or irregular periods, depression, a slowed heart rate, and problems getting pregnant and maintaining pregnancy. … Given the relatively non-specific symptoms of initial hypothyroidism, Hashimoto’s thyroiditis is often misdiagnosed as depression, cyclothymia, PMS, chronic fatigue syndrome, fibromyalgia and, less frequently, as ED or an anxiety disorder.

It was such a relief to know that how I felt was NOT normal, and that I could expect to feel better soon.  Right?!  Wrong.  Given how long I had been waiting for an answer, of course I wanted to know when I would start to feel better.  Here is what my doctor communicated to me through the health system’s patient portal:

In terms of the effects of levothyroxine – you may feel a difference in a couple of weeks – I don’t know if it is going to be the entire answer in you.  It should not be difficult to get your levels in range but sometimes that is not the basis for the symptoms. If your levels normalize and you feel no change in symptoms then that would be the answer.   I don’t necessarily have an answer for your longer term question about feeling back to normal – as I think there may be multiple reasons for your symptoms.

And so, after a week or so of feeling elated, I had another huge emotional crash.  The thyroid medicine was helping me feel a bit better, but still nowhere close to normal.  And I had to wait six to eight weeks between each dosage adjustment, which meant feeling better (if thyroid hormones was even the solution) would take months and months.  When I asked my partner how to describe how I was feeling she said “tell them you’re a shadow of your former self”.  And I was.  Once again I was not getting what I needed from the doctors who I thought should be able to help me.

Beyond pills

It is really important to know what to test for and to get your thyroid hormone levels in the functional range.  If you or a loved one are contending with this, don’t let anyone tell you pills are enough!  Research shows that 90% of people taking thyroid hormones will fail to feel normal.  Even the acclaimed Mayo Clinic website is misleading.  It says:

The good news is that accurate thyroid function tests are available to diagnose hypothyroidism, and treatment of hypothyroidism with synthetic thyroid hormone is usually simple, safe and effective once you and your doctor find the right dose for you.

It’s a lie! It’s a lie!  By the time you’re ill enough to get diagnosed, you already have antibodies.  So it is extremely unlikely that a ‘simple’ pill is going to be enough to get your life back on track.  Shame on the Mayo Clinic and the many other medical establishments that do such a crappy job educating patients about what it actually takes to heal.  Anyone who tells you it’s simple or easy is either uninformed or lying to you.

So once again I went back to my research, which opened up a whole new world of possibilities for me.  I read a number of books including Isabella Wentz’s book Hashimoto’s Thyroiditis: Lifestyle Interventions for Finding and Treating the Root Cause.  In addition to supplementation for all my vitamin deficiencies, I learned about the role of diet in treating autoimmune diseases, the relevance of understanding my own genetic make-up, and searching for other things (like past illnesses or environmental toxins) which could prevent me from feeling well again.

A support system

I am really so fortunate to have a family – my partner, my parents, and my sister – who tolerated all my sniveling, who confirmed that I was not myself, who listened to me and my ramblings about the latest medical journal I had read on one thing or another.  I’m also very blessed to have lived many years feeling like another person entirely, so I have that healthy self of my past as a point of comparison.

But the reality is that auto-immune diseases are a chronic illnesses, and a small support system can be drained to the point that they can’t provide the emotional support you need.  It’s no surprise, then, that communities like Hashimoto’s 411 (on Facebook) have over 30,000 members.  There are so many disease-specific questions and concerns, and having that network to draw on – for questions about everything from lab results to food sensitivities to marriage counseling – is a huge relief both for the patient and for their families!

A few months into my diagnosis I was also lucky to stumble on Angie Alt’s SAD to AIP in Six program.  I’ll talk more about the Autoimmune Protocol (AIP) below.  Through this group coaching program, Angie works with other specialists (such as trained nutritionists) in small online groups to help people make the transition to a new way of eating.  I had the chance to meet others (almost all women) who were battling other autoimmune diseases, and fervently hoping that food changes would help.

Food as Enemy, Food as Healer

Changing what you eat is not easy, especially when you know it may be a long term undertaking.  However, there is a growing body of research to suggest that significant dietary changes can put autoimmune diseases (Hashimoto’s, Crohn’s Disease, Rheumatoid Arthritis, Multiple Sclerosis, and others) into remission.  Why is that?

The research suggests that most (if not all) autoimmune diseases begin in the gut.  You may have heard the term ‘leaky gut’ in the press?  In medical language, it’s called ‘intestinal permeability’, and what it means is that the intestines have developed holes which are allowing food to pass into the bloodstream.  The food molecules then trigger an autoimmune response, and the body begins to mount an attack on those molecules.  You can learn more about this in detail in Sarah Ballantyne’s book The Paleo Approach: Reverse Autoimmune Disease and Heal Your Body.  At first I was resistant to all things ‘paleo’. Everything I had read and heard made it sound like the next Atkins or South Beach fad, and I really wasn’t interested.   But the more I read, the more I felt that I should give it a try.  What did I have to lose?  Sarah is a medical researcher who was diagnosed with multiple autoimmune diseases.  She explains complex medical ideas in simple, compelling ways.  I found her book invaluable as a way to guide my own decision making about how to make food changes that would help me heal.

In the case of Hashi’s patients specifically, gluten and soy molecules also happen to look a lot like the thyroid, which leads the body to mount an attack on itself.  One of my friends described Hashi’s as ‘a little Japanese man chomping away on your thyroid’.  It sounds funny, but in fact it is not far from the truth; as the body tries to defend from the food molecules in the bloodstream, it ends up attacking the thyroid gland, rendering it less and less effective until the signs of Hashimoto’s appear.

I was at a goodbye lunch for a coworker in November, and I was enjoying a roasted pepper soup and a salad with roasted beets and goat cheese.  Partway through the meal I began to feel nauseous and dizzy.  I warned my team that I might need medical attention.  The moment passed, but I developed a massive migraine as the day progressed.  I just knew I couldn’t continue to live feeling as though I was being ambushed by food all the time.  For each time I had an experience like that, it took me two to three days or more to recover.

After reading extensively, I decided I wanted to take food sensitivity tests so that I could begin to focus on healing my gut and my body in general.   I paid for my tests out of pocket because I asked several doctors, and no-one was willing to order them for me.  The doctors who refused said that the tests are inaccurate, that there are often false negatives, and that I should just eat more leafy greens and I’d be fine.  In fact, other people online (whose opinions I respect) agree.  However, in my case, I was having catastrophic issues with food all the time.  Migraines were common, heart palpitations, my blood pressure was all over the place, I had unexplainable fatigue, digestive issues, and more.  Fortunately, there are a number of labs that offer direct-to-consumer options, including Cyrex, Altress, and ALCAT.  I am lucky to have the means to pay for the tests out of pocket, so I did.

Just before Christmas, the test results revealed my sensitivities.  I had developed reactions to foods I was eating all the time!  Beets were on the list, as were berries and melon, grapes, agave, several kinds of fish, most Indian spices, and many more things.  I immediately removed all the offending items.  It was not easy, but literally within a few days, I felt like a lead blanket had been lifted off my shoulders.  I felt so, so much better!

Again, most experts recommend an elimination diet rather than allergy testing, but I think in my case, I would have still not felt better, because many of the things to which I am sensitive are permitted in those diets.  It might not be the right thing for others, but in retrospect it was the right thing for me.

In January I joined Angie Alt’s SAD to AIP in Six program (described above) to make the transition to AIP, and I have been eating that way (in spite of my hectic work travel) since the end of January.  The AIP is a more strict version of ‘paleo’.  For autoimmune diseases, the AIP recommends eliminating all grains (not just those with gluten), rice and corn, dairy, eggs, nuts and seeds, nightshades, coffee, and more.  For me that has meant batch cooking AIP foods and packing all my breakfasts and lunches for the length of my trip.  I have also begun staying in a hotel with a kitchenette (or at least a refrigerator) so that I can buy and prepare food that is safe for me to eat.  Business travelers will appreciate that I have to check my suitcase so that I can carry on my cooler (so annoying).  And I almost always receive additional scrutiny by airport security.  But so far I’ve made it work.  The only real bummer is that there is just no way I can travel to India to visit my team right now, as it would just be a minefield for me.  I couldn’t possibly pack enough food, and (having been there several times before) I can’t imagine what I could eat that would be safe.

I have also started making bone broth (you can learn more about why on The Paleo Approach blog) and homemade water kefir (a probiotic).  I’ve developed routines around both which I hope will contribute to my ongoing healing journey.

The intestinal lining is highly regenerative, so within about 21 days of removing offending ingredients, it is largely mended.  Bone broth and probiotics (such as kefir and sauerkraut) help too.  But it takes the body much, more longer (some have estimated as long as two years) to address all the consequences – from inflammation, to the auto-immune response itself.  Some people report losing 20 or 30 pounds of inflammation weight in those first few weeks!  I was not so lucky, but I definitely felt another lift with the elimination of nightshades from my diet.  What are nightshades?  I didn’t know either!  Eggplants, tomatoes, peppers, and potatoes are all part of the nightshade family, and something about them causes increased inflammation in the body.  So when you have an autoimmune disease, it’s usually recommended to avoid them, and then (after a prolonged break), reintroduce them one at a time to see if they cause problems.

And that’s where I am today.  I’m using an easy-to-read and concise ebook from the Phoenix Helix blog to plan my reintroductions.  It’s going to take me nearly a year to work through the recommended stages and my known allergens.  If I have setbacks it may take me longer.  But, I have a plan and (hard hard HARD as it is) it’s working for me.

Of all the possible factors affecting my health, food was the one most completely in my control.  However, I won’t deny that making these changes is not for the faint of heart.  It takes tremendous willpower, especially if you enjoy sharing food as a way to build friendships or community.

Genetic testing

As I learned more about the failure of our medical system to address the tsunami of autoimmune diseases, I once again found myself looking at alternative health options.  I felt that I needed a doctor – if such a doctor existed – that would help me deal with the whole picture, from hormones to food and more.  I had been to a couple of naturopaths before my diagnosis, and I do believe strongly in that kind of alternative care.  But I felt at this point that it wouldn’t be sufficient.

Through a variety of online channels, I was exposed to Functional Medicine.  This is an emergent area of medicine that is not only holistic, but personalized.  That is, looking at the whole person in context along with their genetic make-up to provide the best possible guidance.  It’s a special training that’s undertaken by all kinds of doctors, and today there are only around 200 doctors that have been through it.  I was lucky to find an MD (a former pediatric anesthesiologist) not far from my house who was just starting her own practice.  Again, as an out of network provider, I was lucky to have the means to pay the $250 a hour for an initial two-hour appointment.  Because the practice was new, I didn’t have to wait another five months for an appointment, and my chances of getting some reimbursement from insurance was improved due to her being an MD.

My main interest in a functional medicine practitioner (FMP) was to get help in reading the analysis of my genome mapping, and helping me figure out what to do about that.  I ordered my genetic tests from 23andme.  There has been some controversy in the press about the organization, because they are planning to do their own scientific research, and then resell the data to pharmaceutical companies. I opted out of as much of that research as possible, knowing that this was the only direct-to-consumer genetic testing option available to me.

Once I received the data file, I submitted it to a number of online analysis engines, including Sterling’s App on MTHFR Support, Nutrahacker, and Genetic Genie.  Ordering all three reports was a little bit of overkill, but I was on a tear to learn as much as I could.  I read everything I could about my mutations, and then brought all my results to my FMP for discussion.

Among other things, I learned that I shouldn’t drink green tea (I had figured out it was giving me migraines, but didn’t know why).  I learned that I might have a sensitivity to l-glutamine, a critical insight since that is an amino acid that is often prescribed for helping to heal the gut.  The results correlated my suspicion that I had an allergy to fluoride (also reinforced by recent research and more research).  I also learned about several mutations that, together, were affecting my body’s ability to detoxify.  I started some additional supplements (such as Vitamin C) to help address the problems in those methylation cycles.  I am now waiting for test results to understand more about the levels of certain toxins in my body, such as mercury from having fillings removed, arsenic in rice, or BPA from water bottles.

I do hope that the toxicity tests will provide some further insights into why I’m not back to my old self yet.  Weight loss continues to be a challenge for me, as it does for many with Hashimoto’s.  However, the body stores toxins in fat cells.  Detoxing too quickly can cause huge problems, including brain damage.  So, I’m not in that big of a rush!

In Closing

Well, it’s been cathartic to get this written down!  I hope that others will learn and benefit from my experience.  And, if you’ve read to the end, please do pass the link on to others.  For me, the most important takeaway is that Hashimoto’s is an auto-immune disease, and a chronic illness.  It takes a long time to get so sick, and a long time to heal.  Having the right support system, making dietary changes, and addressing the underlying cause of illness are the only paths to remission.

Living with Hashimoto’s requires extraordinary patience and persistence by the patient and their family.  It can be soul-crushing to feel like your life is coming to an end, and that doctors don’t believe you.  I read a moving article about Chronic Fatigue Syndrome; there is apparently some new research that show brain differences in those suffering from CFS.  The science itself wasn’t moving, but the reaction of the patients really resonated with me – many expressed relief at the fact that the research might legitimize how they felt.  On a related note, Stacy Robbin’s guest post It’s a ‘Beautiful’ Thing on the Hypothyroid Mom blog talks about what these types of illnesses take away.  Many times it’s the things you’ve taken for granted.

In my case, the scariest thing was (and continues to be) the brain fog.  I didn’t realize how bad it was until it started to lift.  In her autobiographical piece entitled What’s Wrong with Me?, The New Yorker author Meghan O’Rourke said:

A common symptom of autoimmune diseases is debilitating fatigue. Complaining of fatigue sounds like moral weakness; in New York City, tired is normal. But autoimmune fatigue is different from a sleep-deprived person’s exhaustion. The worst part of my fatigue, the one I couldn’t explain to anyone—I knew I’d seem crazy—was the loss of an intact sense of self.

It wasn’t just that I suffered brain fog (a usual autoimmune symptom); and it wasn’t just the “loss of self” that sociologists talk about in connection with chronic illness, where everything you know about yourself disappears, and you have to build a different life.  …

To be sick in this way is to have the unpleasant feeling that you are impersonating yourself. When you’re sick, the act of living is more act than living. Healthy people, as you’re painfully aware, have the luxury of forgetting that our existence depends on a cascade of precise cellular interactions. Not you.

I honestly question how I took on a new job (and, this year, a new role in the same company) when I can barely remember what day of the week it is.  So much of my sense of self worth is caught up in my intellect, in my ability to read and synthesize ideas, in my ability to generate new ones.  I am still not where I was before I had kids, but I am definitely better than I was six months ago, three months ago, or even one month ago.  I can only hope things continue to improve as I unpack and address all the reasons I became sick in the first place.

I am seeing more and more in the press about autoimmune diseases, and about Hashimoto’s specifically.   For example, What’s Wrong with Me? in The New Yorker, and Self magazine’s Is there an autoimmune epidemic?.  I hope that this blog post will contribute to that growing public awareness so that women can get the medical attention they need.  

One of the scary things about being chronically ill is that it can really consume you completely.  In my case, I have to have my thyroid and vitamin level checked regularly, my diet is restricted, and with every meal I take 20-30 supplements to make up for the deficiencies in how my body is working today.  Sometimes I get unexpectedly knocked back by something I ate or drank, and it may take me a week to recover.  On those days, it’s hard to stay positive and focused on remission.

The subtitle of O’Rourke’s article is “I had an autoimmune disease. Then the disease had me.”  I am trying really, really hard not to let this disease define who I am and how I live my life.  I hope I can keep the positive attitude in spite of the many ups and downs.  I keep telling myself that I have Hashimoto’s, but it doesn’t have me.  And hopefully it doesn’t have you or anyone you love, either!

Learn More – Books

I’ve mentioned Sarah Ballantyne’s book The Paleo Approach and Isabella Wentz’s book Root Cause elsewhere in this post, but a list of books would’t be complete without mentioning them again, for reasons I reiterate in the final section, below.

Stop the Thyroid Madness and Stop the Thyroid Madness II are considered by the patient population to be two of the most important books written in this space.  Janie Bowthorpe’s website of the same name provides a way to send these books anonymously to doctors who have failed to treat their patients effectively, or based on the latest science.  I can think of … 14 doctors who should receive a copy from me!  Her website is also full of information and resources that are informed by the experiences of other patients, and not by outdated medical practices.

I have heard great things about Dr. Datis Kharrazian.  He’s written two books about thyroid disease.  I purchased Why Isn’t My Brain Working?: A Revolutionary Understanding of Brain Decline and Effective Strategies to Recover Your Brain’s Health.  But it is extremely dense, and, ironically, with my brain fog I haven’t been able to plow through it.

As I mentioned in the section on food, reintroductions after AIP are full of enthusiasm, stress … and confusion.  Eileen Laird of Phoenix Helix wrote a short ebook about reintroductions that has been invaluable for me in preparing for this next phase of my journey.

The Hypothyroid Mom website has a long page with lots of books I haven’t even read yet.

Learn More – Online Resources

The American Autoimmune Related Diseases Association (AARDA) just recently published the results of their survey, which found that “Fatigue described as ‘profound, ‘debilitating,’ and ‘preventing them from doing the simplest everyday tasks,’ is a major issue for autoimmune disease (AD) patients, impacting nearly every aspect of their lives. It affects their mental and emotional wellbeing and their ability to work.”

The Hashimoto’s Institute houses the video and transcripts from an online summit.  This material was some of the first that I read after being diagnosed.  I think the variety of material is invaluable, and still among the best material I’ve read so far.  Topics range from dosing of thyroid medicines to the science behind the guidance to ‘eat the rainbow’.

I think Sarah Ballantyne’s The Paleo Mom site is the flagship of what’s going on at the intersection of autoimmunity and food at the moment.  If you only have time to read one site, this is it.  The blend of science, personal experience, and varied recipes is wonderful.

As I mentioned above, I found Isabella Wentz’s book Root Cause to be an invaluable way to learn more about and address all of the reasons I might have ended up with an autoimmune condition in the first place. As a pharmacist she acknowledges the importance of doing more than taking a pill.  She talks about her own experience that makes the guidance accessible and real.  Her newsletter also continues to provide new insights.

For me, Hypothyroid Mom is near the top of the list, too.  The current readership is a testament to the site’s value – Dana Trentini has nearly 750K visitors a month.  Her posts are easy to consume and informative, and she also has a variety of guest bloggers.  She also posts funny cartoons on her Facebook wall, which provides some welcome comic relief from all the medical articles and people desperate for guidance on their health issues.

There are a whole bunch of really wonderful bloggers posting AIP recipes, or Paleo recipes with modifications for AIP.  There are too many to name them all here.  Just do a Google search on AIP recipes to get started.

If you’re on this journey yourself, I would encourage you to try the AIP diet.  I really enjoyed Angie Alt’s SAD to AIP in Six group coaching, and would recommend it as a way to jump start the diet changes, and to build an online support community.  She provides an ebook copy of The Alternative Autoimmune Cookbook: Eating for All Phases of the Paleo Autoimmune Protocol at the end of the course.  The members of my group chose to form a small, closed Facebook group to stay in touch, and it’s been great to have a more intimate group to talk with about the challenges and improvements we’re encountering.

One of the AIP cookbooks that I like a lot is Mickey Trescott’s The Autoimmune Paleo Cookbook: An Allergen-Free Approach to Managing Chronic Illness.  I use her sausage recipes (chicken garlic and sage, as well as three-herb beef) for my breakfast most mornings.  I also learned to make my own kefir using her book.  She now has a new online offering called AIP Batch Cook, which provides video instruction and recipes to prepare food in bulk for the week.  This approach was recommended by Angie Alt, and I’ve learned it’s really the only way to do AIP.  Otherwise, you don’t have food on hand when you need it, you send up eating things you shouldn’t, and ultimately delaying your healing process.

I can’t say enough about the value of online communities through Facebook. I had largely stopped using it before my diagnosis, but I find myself back there all the time now. I would recommend Hashimoto’s 411, Girlfriends’ Guide to Hashimoto’s, AIP for you and me, and more.  Make sure you read the guidelines for the ones you chose to join.  For example, Hashimoto’s 411 is a gluten-free zone, and is adamant about removing people who may be marketing products.  The AIP group is just as zealous in other ways, as they want to be sure that non-compliant recipes aren’t posted.  But the importance of having a support system can’t be underestimated, so if finding others to talk to is of interest, give those (and others) a try!

22 Comments on “I have Hashimoto’s”

  1. It sounds like you have been thru a horrible journey. But with the support of family and grit in dealing with the medical establishment, you have found the combination of knowledge, diet, medicine, exercise, etc. to get you on your path to healing. Thank you for sharing your journey. It is a great resource for those who through your generosity will not have to suffer on their journey as you did.

    • Thanks Dori! Yes, I’m extremely blessed to have a strong support system and the means to get the medical attention I need. A whole lot of stubbornness has helped too. 🙂

    • Thanks Elizabeth. 🙂 My partner and I have a tradition to establish a Word of the Year to set the tone, and mine this year was Vitality. Here’s hoping I realize that goal!

  2. Natalie thank you so much for sharing. You have creatively intertwined your story with an amazing bibliographic resource, it was well worth the wait.

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  5. Lovely post Natalie. I’m really glad that people speak openly about Hashimoto’s. I have it myself and it also took me a long time to be correctly diagnosed and treated. I’m still learning to cope. But, due to people like you I feel it is easier everyday. Take care, Natalie.

  6. Great comprehensive post. I’ve been living with Hashi’s probably since I was a child. One of my main symptoms is chronic urticaria which I’ve had since I was very young and no doctor could ever figure out what was causing this. When I got my dog almost 6 years ago I got very sick, that’s when I learned it wasn’t just hypothyroidism like dumb doctors thought it’s Hashimotos. My dogs dander is a major trigger for Hashi’s, it makes it very difficult to breathe which makes me even weaker. I’m not allergic to the dander and of course doctors don’t understand why the dog dander is causing this. I have a healthcare background so I treat myself naturally, a holistic approach. I really need to go gluten free, it’s difficult for me. However, I know diet is a major component in controlling this disease. My teenage son has already been diagnosed with hypothyroidism, I don’t want him to develop Hashi’s. Doing research on thyroid conditions it’s interesting that this disease is from my Sicilian side of the family and in that region of the world thyroid conditions are prevalent. I’m thankful there’s so much information about this disease online, it’s helped me more than any doctor ever has.

  7. This is the most real and helpful Hashimotos post I have read. I have been on this long, maddening journey for over 10 years and I can relate to all of your struggles. It all really hit home – especially Meghan O’Rourke’s quote. Unfortunately, I did not have the support system. My journey was met with doubt and ridicule from friends, family, and coworkers –
    which was probably the most hurtful part of it all. I had to deny so many invitations from friends and family, knowing that every time I went out I had a least a 3-4 day recovery… until eventually they just stopped asking. Their lives moved on, while mine was stuck in the depths of fiery, lethargic, bloated hell. No one understood. And I didn’t have the energy to try to get them to understand.

    “…and it wasn’t just the “loss of self” that sociologists talk about in connection with chronic illness, where everything you know about yourself disappears, and you have to build a different life. …To be sick in this way is to have the unpleasant feeling that you are impersonating yourself. When you’re sick, the act of living is more act than living. ”

    For a lot of years I couldn’t recognize the person staring back at me in the mirror. The me I used to be packed up and moved out of my life by 20, and finally over 10 years later, after all of the testing, 20+ doctors, week of (inconclusive) testing at Mayo, and hours of self research, I am closer to being armed with the knowledge I need to treat my Hashimotos, Celiac, and all of the other symptoms and food sensitivities I have developed. I am slowly putting my life back together. It will probably never be the same that it was, I still find myself mourning the loss of the carefree, marathon running, adventure seeking me, but hopefully this new version of me is one that can resemble the strong, confident, and independent person I used to be.

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  10. I’m so sorry to hear it took so many doctors and a whole lot of work from your side – it really shouldn’t have to be this way, that so many thyroid patients are let down when it comes to getting an early diagnosis and proper treatment. But I’m glad to hear you’ve empowered being your own thyroid advocate and have embraced taking on some diet and lifestyle changes to improve your quality of life. I know this post is a few years old now, so I can only hope that you’ve continued to improve in your health since this was originally posted. I’ll of course check out your more recent posts and work and hope to find updates there!

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