I still have Hashimotos
Just over three years ago, I was diagnosed with an autoimmune condition called Hashimoto’s Disease. I was in pretty bad shape at the time. I knew my mental acuity was deteriorating rapidly, I was perpetually exhausted, and I gained weight no matter what I did about food and exercise. It was finally with a referral from my ob-gyn to an endocrinologist that I received a diagnosis. However, beyond prescribing a few pills, the endo did very little to help me on my healing path.
At the time of my diagnosis in October 2014, I was sleeping ten hours a day, and then taking 3-4 hour naps every weekend. I was too tired to exercise, and I continued to gain weight in spite of making a number of dietary changes (including eliminating gluten, dairy, and soy). I also tried a low carb diet to no avail. I was depressed, but it was largely because of my health issues. I felt like my life was slipping away from me, and what scared me the most was that I was missing so much time with my young children (who were 4 and 6 at the time). I knew I needed to focus on healing.
With the little bit of energy I gained from the thyroid medicine and some additional dietary changes, I began reading everything I could get my hands on about Hashis and the constellation of conditions that typically accompany it. What terrified me the most was that people in patient support communities said I should expect it to take 18-24 months until I was able to truly understand and manage my illness. Although I am more than three years in, I remember my near hysteria at the time. I had felt so terrible for so long, and waiting another two years seemed unbearable.
Towards the end of my first year, I chronicled my findings and my progress in a blog post entitled I have Hashimotos. I had made a number of changes and discoveries, and that blog post was the first substantive one I had written on this blog in years. The intent of this post is to continue that trajectory by sharing with you what I’ve learned and experienced in the past two years, and what I think may come next. Briefly, I would say I have learned to manage the condition, but I know now that my life will never be the same. And it’s hard not to resent that sometimes.
As an example, just last week I developed – seemingly out of nowhere – a painfully dry, itchy, red rash all over my face. I felt it getting progressively worse over the course of my work day. I still I have no idea why it happened. Did I develop an intolerance to the soap I have been using for the past two months? Is it my new shampoo? Might it be a reaction to environmental toxins in our brand new office space? Was it something I ate? Suddenly, anything I’d done and everything around me was suspect. These occurrences result in ongoing, low-grade anxiety because there is rarely a definitive reason why a “flare” occurs. My weakened immune system responds to all kinds of thinks that I could have never imagined or predicted in the past. These miserable, soul-crushing, unplanned, and often unexplainable symptoms remind me on a regular basis that life will never, ever be the same.
Part of the reason I’ve struggled to write this post is that I do want to share a positive outlook with those who might read this. But it has not been easy. Nonetheless, I think it’s more important to raise awareness than to pretend it’s all going to be ok. Hopefully my experiences will help you advance your own healing, and also avoid some of the pitfalls I encountered since my diagnosis.
In case you were not aware, a blue butterfly is used as a community symbol for those of us with Hashis. January was Thyroid Awareness Month; please continue to spread the word about this serious and often undiagnosed condition.
Over the past two years I have read, listened, and watched to countless resources about autoimmunity and Hashimotos, and so I do wonder whether what I have to say that will be new and useful to others with this condition. My original post has been viewed over 600 times, and hopefully helped a few people along the way. The feedback that I received (in the comments, on Facebook, and in many private emails) following the first post is that people seemed to value reading my story.
If you want a medical perspective on Hashimoto’s, I like Dr. Isabella Wentz’s approach, which is accessible, comprehensive, and systematic. I would recommend starting with her book Root Cause, and (if you have the financial means), her online course Hacking Hashimotos. She has also recently released a nine-part online movie called The Thyroid Secret. At the beginning, I also learned a lot from Dr. Sarah Ballantyne‘s books, which are eye-opening but very dense (she is a medical researcher). Many people also recommend the work of Dr. Datis Kharrazian. I also found his work very insightful, but I honestly didn’t have the mental clarity to read and understand it all until just a few months ago.
I think their approaches make great sense, but my PhD is not in a medical field. My current personal health research folder in Evernote has nearly a thousand entries now, but I’ll spare you that! Instead, I am going to focus on sharing my own experiences and some lab results here, supplemented by what I’ve read. In this post I will to address some of the general areas I’ve learned about but didn’t understand well at first such as genetics, other hormones, environmental toxins, and co-infections. Then for the remainder of this post, I’ll focus on the things that I’ve learned along the way as I’ve tried to address the three symptoms that I have struggled with the most – mental clarity, energy, and weight loss.
Before I begin in earnest, one thing I wanted to mention is that I have tried many different thyroid medications over the past year. My endocrinologist had originally put me on Tirosint (a T4-only medication with minimal contaminants). At my request she tested for T3 and Reverse T3 (RT3), and following that she added Cytomel (T3). I found that as my morning Cytomel wore off, I had a precipitous drop-off in energy, which I really hated. Later, when I started working with a functional medicine practitioner (two years ago now), I switched to WP Thyroid, which seemed to work fine.
But after many months and small changes on a number of other fronts, I still felt that I was operating at about 75% of the energy I used to have. I began pushing harder for that next level of health and well being. During that time, it became clear (from a routine thyroid panel) that I was not converting the T4 to T3. So, this Spring I switched to a T3-only medication.
The thing I don’t like about T3 is that all forms that I have tried have a very short half life (six-ish hours), so you have to take it more than once a day, and plan your meals around it. It requires that you take it on an empty stomach – no food for two hours before and 45 minutes afterwards. It’s not the end of the world, but it does serve as a perpetual reminder that you’re sick and managing a disease. This is in contrast to T4, which you can take just once a day in the morning, and then go about your day like everyone else.
Now I’d like to share with you a bit about my learnings and experiences as it regards genetics, hormones, environmental toxins, and co-infections and how those may affect people with Hashimoto’s.
As I described in my first blog post, I was lucky to find a Functional Medicine Practitioner (FMP) who was opening up her private practice right around the time I was diagnosed. She asked me to bring my 23 and me data and some related reports (such as Genetic Genie and NutraHacker) with me to my first appointment.
Some of you will be familiar with medical research that has shown that certain genetic markers indicate women who are prone to a deadly version of breast cancer. Having the gene has led some women to choose a double mastectomy, knowing that a breast cancer diagnosis would otherwise be inevitable.
While autoimmune conditions don’t induce the same kind of fear in people as cancer does, the same principles nonetheless hold true. Your genome mapping and subsequent analysis can help a knowledge physician understand what combination of mutations may have contributed to your autoimmune condition. For example, I had a test run to evaluate my gut microflora. One of the things that I learned in that test was that my pancreas function is less than 20% of what it should be. In reading Dr. Datis Kharrazian’s book entitled Why Do I Still Have Thyroid Symptoms when My Lab Tests Are Normal?, I learned that it’s very common for people with Hashis to develop an autoimmune condition against the pancreas. This can be tested by looking for GAD antibodies. At my request, my physician ordered Cyrex Array 6, which is the Diabetes Autoimmune Reactivity Screen. The results were normal (no antibodies against the pancreas), which was disappointing and relief all at once. But when we went back to my 23andme results and the subsequent NutraHacker analysis, my doctor realized that my genetic markers pointed to low pancreas function. So, it is possible that we could have delved more deeply into those reports, made adjustments, and perhaps avoided the $500-600 cost of the Cyrex test.
I also have a number of serious problems with detoxification. You may have read about MTHFR, which is shorthand for a series of genetic markers related to detox. Dr. Ben Lynch is an expert in this area. In addition to a couple of MTHFR mutations, I have others which compound the problem. The combination has signficantly reduced my ability to detox, which in turn has resulted in lead and mercury poisoning, elevated levels of barium, and problems with the hormones our bodies produce and eliminate naturally. More on that below.
Hashimotos affects women with much higher frequency than men. Based on current medical research, this seems to be due at least in part to female hormones (estrogen), and disruption caused by estrogen-like substances in our environment. In addition to checking my thyroid hormone levels regularly, I have also had sex hormones levels checked a few times. When we first checked, my estradiol levels were elevated, which is to say my body was able to produce estrogen, but not to remove it from my system. This leads to estrogen dominance, which can be a trigger for Hashimotos. Sadly, in the year prior to my diagnosis (while my health was deteriorating rapidly), I was prescribed birth control pills in an attempt to regulate my hormones. The pills I was prescribed had two different forms of estrogen, which likely contributed to (or accelerated) my getting Hashimotos.
The health and function of the adrenals are also tightly coupled with thyroid health. Although the exact reasons are not yet known, it’s clear that “if your stress is out of control, your body will steal valuable resources to make stress hormones (including cortisol) instead of healthy thyroid and sex hormones”. You can learn more from this article on the Hypothyroid Mom website. I have had my cortisol levels checked a few times, but I have not made much progress. It is hard to reduce stress when you’re worried about your health all the time! In addition to the impact on thyroid hormone production, adrenal problems can lead to significant sleep disruption. Sleep deprivation is no fun, and can of course lead to other problems. More on that in the Energy section, later.
I mentioned above, there are all kinds of chemicals in our environment (and even phytoestrogens in food like soy) that are causing health problems for many people.
It’s becoming increasingly clear that BPA (which is present in plastic water bottles, the lining of canned foods, and more) is associated with a multitude of health issues. One of the very first articles I wrote on this blog nearly ten years ago was about the risks of BPA. I had become aware of it when selecting bottles for my newborn son. Here is a recent medical journal article on the connections to hypothyroidism, if you’re interested.
I have written a whole separate post called It’s not just Flint about my personal health challenges with and research on environmental toxins. If this is something you’re dealing with or concerned about, please have a look. But in short, doctors are ill-informed to diagnose and treat these things. The more you know about your options, the better position you’ll be in to advocate for your own health.
In addition to all the tests described in my earlier post, my doctor also recommended running Cyrex Array 11, the Chemical Immune Reactivity Screen. Through that I learned I have a sensitivity to Benzene, which is a petroleum derivative found in cleaning products and more.
My doctor said I should avoid walking on roads where there is a significant amount of automobile traffic (not a problem since I usually walk before sunrise). A few weeks ago I waited 30-40 minutes on the airport sidewalk for a hotel shuttle. By the time I got to the hotel, my throat was swollen, I had a headache, and it hurt to swallow. So, the consequences are real and immediate.
My doctor also suggested that when I am traveling I should wear a face mask that filters for chemical exposure. Her concern is that on the airplane while people are boarding, there are a lot of fumes coming into the plane. All that sounds very dramatic, but I am often fatigued after my business trips, and I have to wonder if less exposure to airline and car exhaust would help. Unfortunately in this case, my vanity (more on that below) is working against me. I just can’t bring myself to buy and use a big bulky mask like that on my frequent business trips.
One of the million scary things about our new administration is that is has been very difficult to find the information I needed to understand and combat what I’m dealing with. The REINS Act and the gag order on the EPA and USDA and other agencies can only mean a growing emphasis on corporate interests, and increasing risks to consumers from exposure to unregulated chemicals.
One area that I’ve wanted to explore further is co-infections. Of particular note is the growing interest and momentum around the Epstein-Barr Virus (EBV). While I never had mono, my antibodies to EBV are high:
It’s interesting that my test results show evidence of a past infection. But the reality is that many, many people are exposed to the virus, and not all of them end up with an auto-immune condition. So what is the connection?
Some time ago, I read a summary of medical research on the Hashimotos’s Healing website (which is unfortunately no longer active). The author explained the various kinds of Herpes virus, the progression of EBV, and the many things the virus can disrupt.
Of particular interest to me was that “foods and supplements … can feed and encourage the herpes virus .. [t]he most common are foods that are low in lysine and high in arginine”. This includes orange juice, coconut, and chocolate. And also that “[h]ighly acidic foods and those laden with chemicals can also exacerbate viral infections and lead to outbreaks”. I began to suspect that my food choices were affecting my health in ways that I had not even imagined possible.
There is a growing body of research that suggests that there is an intricate connection between EBV and the onset of autoimmune conditions such as Hashimoto’s. Here is a recent article from a medical journal. However, since so many people are exposed to the virus from a very young age, it’s still not clear to medical researchers what the underlying reasons or triggers are for those who end up chronically ill.
Although I’m not generally a fan of USA Today, there was an interesting, four minute video posted about Dr. Henry H. Balfour Jr, who is seeking to develop a vaccine for mono. One doesn’t exist, although the virus was identified in 1964. The news story centers around a woman who has faced years of strange illnesses, which for many years seemed disconnected. His vaccine has enabled her to feel consistently well for the first time in years.
What really knocked me back is that the EBV antibody levels she describes are lower than mine (above), which leads me to wonder whether the vaccine is something I should pursue in the future. It is something I’m planning to discuss with my physician at my next appointment, though I’m not sure I’m ready to subject myself to a clinical trial given how much I’ve already been through on the health front!
I have also met others with Hashis whose root cause was mold exposure. Apparently it has many symptoms in common with Hashis and other auto-immune conditions. Although I don’t have an auto-immune response to mold (I had that tested too), our previous house was built in 1924 and flooded multiple times while we lived there, including twice with sewer water. So I wouldn’t be surprised if mold or fungus contributed to my ill health as well. They are on my list of things to test this year.
So, this seems like a good time to move on to my three big symptom areas, and share some of my learning and experiences along the dimensions of mental clarity, energy, and weight loss, which (besides lead and mercury!) have been my main focus in the past two years.
If I reflect back on where I was at the point of my diagnosis, this aspect of my life and health has definitely changed the most. I work in management consulting, which is a very fast-paced and demanding environment. At my level, I’m expected to be interacting with clients, managing my team, staying on top of industry trends, and innovating. No pressure!
What I was most distressed about a few years ago was that I was struggling to do more than react to everything coming at me. I was hardly blogging at all – I occasionally posted about the kids on my mommy blog. I was not reading professionally, and certainly not writing much of anything new except what was required for work.
But the combination of health-related changes I made over the few years really started to turn the tide, and I find myself with more mental clarity than I have had in years. It’s hard to say exactly what changed – I wish there had been one magical change that I could share with all of you! It was definitely a product of doing many things consistently, including regular sleep, exercise, supplements (especially the ones related to detox), and ongoing adjustments to my food.
Last year I did more writing and public speaking (including academic guest lectures and one conference) than I have in years. I also attended two professional conferences, which I hadn’t done in nearly ten years. Even just looking at the number of blog posts I’ve written here is a huge indication of how far I’ve come. This year I have a couple of speaking engagements lined up, more blogging planned, a journal article, and I may even co-author a book. So we’ll see how all that goes! I have been seeking out those opportunities, and I feel much more confident in my ability to take things on than I have in many, many years.
Which is not to say things are perfect. My partner pointed out to me that while I’m cooking on the weekends, I often leave multiple cabinet doors open (and fail to notice). Earlier this year I bought a sweet little set of four succulents for my office. I was so proud of myself for remembering to water them on a regular basis. I brought home all my office plants in December, because we were moving to a new work location. At some point I finally realized that they were fake. I had watered them diligently for months, not realizing. So needless to say, I do still think I have a ways to go to be fully clear and present again!
Lack of energy was my major frustration when I started treatment with my FMP. I had always been a highly energetic person. I saw the same in my maternal grandmother (who died in her mid-90s) and my mother (who is still active in many ways, including regular doubles tennis games) in her mid-70s. I feel like steady energy is THE foundation for everything else. If you don’t have energy, how do you advocate for your own health, or even find the reserves to make the hard changes that this disease requires? For me, I felt there were three big areas I needed to focus on to improve my energy – sleep, thyroid flares, and exercise. And, I also feel like hormones (not just thyroid hormones) play a really big role, but I will confess I don’t yet have that sorted out to my satisfaction, so I won’t write much about that here.
Before my diagnosis I was sleeping ten hours a night, and taking 3-4 hour naps in the middle of the day on the weekend. It was not much of a life, and (although I was exhausted and didn’t really have a choice) I was unhappy because I knew I was missing precious time with my young kids.
As I started to feel better, I was thrilled that I didn’t need as much sleep anymore. It was especially great to have the weekend time back. I desperately wanted to feel ‘normal’ again, and stay up late reading or watching a movie after the kids went to bed. And every once in a while, circumstances dictated that stay up late to complete something for work. But when the incremental improvements in my health stopped, I had to make a conscious decision to change my behaviors and make sleep a priority.
Any article you may read about improving sleep quality recommends similar things – consistent waking and sleeping times, a calming bedtime routine, and no screen time in the hour or two before bedtime. And of course, avoiding foods with sugar and caffeine in them. What I learned about myself was that if I stay up after 9 pm, I can stay up for hours – but I pay the price in the subsequent days. So I made a decision that I was going to prioritize my health and get to bed at a decent time. My kids crawl into bed at 8 pm and read until 8:30. While they are reading, I get ready for bed, and I usually turn out my lights by 9 pm. The hardest parts of that are (1) not getting back on my computer or phone, and (2) knowing that there are a million other things I’d love to be doing besides sleep. But once I let those things go, I appreciate not only a decent night’s sleep, but the pleasure of waking up rested and ready to face the next day. And, by the way, I have lots of nights where I don’t sleep well, or I am up multiple times. But on the whole these days, I have more good nights than bad, and that foundation helps me get through the days that aren’t so good.
If you realize that sleep is important to you too, but you’re not sure where to begin, you may want to look into Dr. Sarah Ballantyne’s program called Go to Bed: 14 Steps to Healthier Sleep.
One of the huge a-ha moments for me last few years has been how much food affects my energy levels. After receiving results of my first round of food sensitivity tests a few years ago, I immediately eliminated all the offending foods, and I felt so SO much better. I felt even better yet again after finishing the elimination stage of the Auto-immune Protocol (AIP). I have successfully re-introduced some foods, and I (as I mentioned in last year’s blog post) I found Eileen Laird’s ebook on reintroductions to be the most thorough, clear, systematic, and helpful resource to help me through that.
Unfortunately, in my case, feeling consistently healthy has been elusive. After my initial success with AIP, I developed new intolerances. I was making bone broth regularly, along with the three-herb beef burgers in Angie Alt’s The Autoimmune Paleo Cookbook: An Allergen-Free Approach to Managing Chronic Illness. I was batch cooking on the weekends the way Angie taught in the SAD to AIP in Six Weeks course that I took from her. I was also making bacon and eggs on the weekends for myself and the kids. But I kept experiencing waves of horrible fatigue, and I knew something was still not right. After trying a bunch of other things, 6-7 months after my initial test, my FMP ordered a second round of food sensitivity testing through Genova Labs. My initial tests were through ALCAT, which I personally preferred (more foods tested, easier to read and understand the results), but Genova testing was covered by my insurance. Through the test results I learned that I had overcome many of the foods I was allergic to before. That was a sign that my gut was healing, which was great news. And it was a real pleasure to have more variety in my diet again. But I also learned that I had developed sensitivities to carrots (in my bone broth) and sage (in the burgers). I realized that there were generic (undefined) ‘spices’ in the bacon that I was sensitive to, and egg whites had become an issue, in spite of a successful reintroduction earlier.
More recently, I have been having weird intermittent fatigue and joint pain. If auto-immune conditions are not addressed, they often lead to other ones. Since I have both Rheumatoid Arthritis (RA) and Polymyalgia Rheumatica (PMR) in my family, it’s hard not to get worried when my joints or muscles ache!
I am not eating anything processed at all, and my food is so restricted now (more on that shortly) that there are not many foods left that could be affecting me. I have been soaking and roasting my own nuts, including brasil nuts, hazelnut, macadamia, pine nuts and almonds. I have been rotating them in my diet, but I suspect one of them is causing issues for me now. Maybe the pine nuts, since they are actually a seed. Anyways, I eliminated all but the almonds again and I seem to be doing better, so now I need to test each type of nut again in turn and figure out which one is the culprit.
My point in all this is that flares occur for a wide range of reasons (stress, fatigue, exposure to toxins). But sometimes our everyday choices unintentionally set us back and we have to re-evaluate the basics. I suspect that will be the case for the rest of my life, unfortunately.
Well the good news is, I have been exercising more in the past few years that I had in the 7-10 years prior. My exercise routine has varied a lot over the past year. I was feeling great before Christmas over a year ago, and I got into a regular routine where I was going to the gym 3-4 times a week. The more I exercised, the better I felt. I am not sure why I stopped working out so consistently early in the year – maybe a couple of flares, or work travel, or something else.
In early April last year we made an offer on a new house, and in the ensuing mayhem I stopped exercising completely (except for carrying boxes). I worked long days getting us settled into our new house; moving furniture and boxes up and down three flights of stairs was a great workout. I went to bed late and woke up each day with lots of energy. But I definitely didn’t feel as good in the sedentary months following.
In mid-Summer last year, I received lab results that showed the early warning signs of insulin resistance (pre-diabetes, basically), which requires vigilance on food and exercise. I read many articles which explained the basics of insulin resistance, and confirmed the necessity of regular exercise. I read many recommendations about what an appropriate routine might look like, though some felt too ambitious for me. I also read a compelling article written by a man who had reversed his insulin resistance over several years (ugh!) by making incremental changes. I found what I learned discouraging and elucidating all at once.
At that point I had been on the auto-immune paleo diet for more than 18 months, so I knew there was not much to be done in terms of changing my diet. But terror of a pre-diabetes diagnosis got me exercising again.
I started slowly at first because I was out of shape, but I was fortunate that my baseline health was so much better than it had been in years prior. By the early Fall I was walking the recommended 10K steps a day, 70K steps a week (see one example at right). I was consistent over a number of months (as in the graph at right, above). The Pokemon Go craze helped keep me moving! If I couldn’t get out of bed in the morning, I found ways to walk at lunch, even if it meant talking to members of my global team while I huffed and puffed along.
The more I exercised, the better I felt. I was more positive, high energy, and clear-headed. It was definitely more fun for me to be outside every day than it was to get to the gym, especially on beautiful late summer days. So it’s probably not surprising that as the weather turned colder (and work got busier) it was harder to stick with a daily routine.
I didn’t lose a single pound during that time, by the way, which was completely exasperating. More on that below. However, as frustrating as it was, my experience was consistent with what I had read both in the popular press and in medical journals, which is that regular exercise can improve insulin resistance and BMI without resulting in weight loss.
I had also read in multiple places that High Intensity Interval Training (HIIT) is a good way to reset the body’s metabolism. I took one HIIT class at my gym, and also met with a trainer once. The workouts were great, and made me realize the huge gap between the exercise I get from walking and true intense exercise. But I was struggling with the balance between exercise and rest, and I found it almost impossible to push myself to that degree without an instructor.
In fact, the Wikipedia article referenced above says HIIT requires “‘an extremely high level of subject motivation’ and question whether the general population could safely or practically tolerate the extreme nature of the exercise regimen”. In spite of all my progress, I was slow to recover from the few sessions I had done, and I was nervous that pushing myself so hard would result in a flare. However, as I continue to heal, it is clear I am going to need to engage in more rigorous exercise if I want to lose weight.
The challenge with a blog post like this is striking the right balance between being informative, and TMI – too much (personal) information. This section is definitely going to toe that line.
It’s embarrassing to admit that of all the Hashi’s related issues I’ve struggled with, the inability to lose weight may be the thing that affects my self-esteem the most. Stacy Robbins (author of You’re Not Crazy and You’re Not Alone) wrote an essay called It’s a Beautiful Thing, in which she talks about how deeply her sense of self-worth was tied up in her appearance, and her efforts to make peace with her Hashis-induced weight gain. My maternal grandmother, my mother, and my younger sister have all worked as professional models. Looking beautiful (both in terms of physical appearance and in terms of how we dress) has always been important in my family. Those deep beliefs are incredibly difficult to overcome.
And so, I will confess (with some embarrassment) that I first started seeking help for my health issues when I was unable to lose weight. Not because I was tired all the time (which my doctors told me was normal for a working mom), not because my mental acuity was going screaming downhill. I had changed my diet in as many ways as I could imagine – Weight Watchers, gluten and dairy free, low carb (all of which I’ve chronicled here) – without success. In fact, it wasn’t just that I wasn’t able to lose, but I was gaining slowly and steadily, and there seemed to be nothing I could do to stop it. You can see a graph (from my FitBit data) at right. I was 163 ten weeks after my first pregnancy, but I haven’t been able to get close to that again in the past ten years. The big dips you see occurred when I switched thyroid medicines.
However, once I started working with an FMP and she identified serious issues like lead poisoning, I realized I was being ridiculous to obsess about my weight when I was dealing with much more serious issues. I worked very hard to stop freaking out about what I was seeing on the scale, and focus on the underlying reasons why. I learned that excess estrogen leads to weight gain, and that the body also stores lead in fat cells. I learned that losing weight too fast could result in the lead moving from fat cells in my abdomen into the fat cells in my brain. That was sobering enough for me to stop obsessing about my weight. At least briefly.
Autoimmune Protocol (AIP)
In my first blog post on Hashi’s I think I mentioned that I was exposed to gluten on a business trip. I was unwell for two months, and when I finally started to feel better, I had lost all the progress I made on reintroductions. After that I became much more cautious about my food choices. I don’t go out to eat; I travel with everything I need or I stop at a local grocery store for ingredients I need. Even for work events, I bring my own food. Although it felt awkward at first, I’ve gotten used to it now.
In my first blog post about Hashi’s, I wrote about beginning the Autoimmune Protocol (AIP). It is supposed to be an elimination diet, with gradual reintroductions. I did do some reintroductions late last year, but (as I mentioned earlier), after being exposed to gluten, most of my progress was unravelled. This year I did manage a few reintroductions, including mustard seed (homemade salad dressing – yay!) and some types of nuts, which have provided me with health snack options. But I have yet to revisit some of the basics such as eggs and fresh legumes.
But the reality is, things got worse before they got better. I mentioned earlier that I had another round of food sensitivity tests. I had developed all kinds of new intolerances, and had to eliminate additional foods from my diet. It was one of the very lowest points in this process since my diagnosis three years ago.
While it may sound harsh, I have been consistently doing AIP and traveling regularly for work, and I have little sympathy for people who occasionally cheat and feel like hell later. I have been on an increasingly restricted diet over the past two years, and I am still not where I’d like to be. But through all the issues snd self-experiments I’ve described above, I have ultimately come to accept that my food issues are really hard. But food is also one of the major factors influencing my health, and I have almost complete control over it, so I stick with it.
After gluten exposure and increased sensitivities a few years ago, I introduced a rotation diet, which I read was really important for people in a downward spiral with food allergies. I learned that people facing the most serious toxicity issues found themselves on increasingly restricted diets, and that – in spite of the significant challenges – it was possible to heal in this way. Simply put, it becomes critical to rotate foods in a four day cycle, so you are not eating the same food family more than once in four days. This reduces the risk of additional intolerances developing. Here are the best resources I found on this topic:
- The first article I read was an eye opener. It was on the Super Allergy Girl website, and written by a mom named Lindy Lundy who had multiple children with major food allergies and sensitivities. This was in the days before IgG testing even existed, and she describes her efforts at adjusting her children’s diet until she was able to get their various symptoms under control. It was humbling to realize how much she had to do on her own, compared to what is available to us today. In this excerpt of her book, Lisa explains the basics of the rotation diet. And in additional excerpts, she also provides invaluable charts of foods and food families, and provides links to additional online resources. I would have not known where to begin without the information she provided.
- Author and blogger Kathryn Chastain Treat was being treated at the Environmental Health Center in Dallas to deal with the severe health issues she faced following severe exposure to mold at work. As part of that process, she chronicled her rotation diet. Although it was intense, it was also a sobering reminder that my health issues paled in comparison to hers. Kathryn describes rotating foods faithfully for five or six years.
- Another invaluable source of guidance for me was a blog post on Planet Thrive. I found Julie Genser’s blog post detailed and incredibly useful to help me understand foods and food families, and how to get past my own list of allergies into a rotation diet.
One of the strategies I learned was that it was important – if you have significant restrictions in certain food families – to plan your meals very carefully. For example, four days of meals times three meals a day is 12 different foods in a family. Even for meat or fish, I don’t have that many foods that I eat. So, the solution (for meat, for example), would be to eat beef for all three meals on Monday, turkey for all three meals on Tuesday, and so on. Or, do beef for breakfast and lunch on Monday, and something very different (like fish) for dinner. Needless to say, this way of eating means your whole life is centered around food and food planning.
As onerous as it sounds, the idea of developing further allergies (and having my diet restricted even further) was incredibley stressful to me. So, I started with this four-day food diary that I found online. I apologize that I can’t remember from where I downloaded it, but it was an inspiration. For the first week or two, I hand-wrote my food in every day. But I felt so, so restricted and deprived (and almost panicked) about being able to stick with it. And I realized that I needed to look at the problem differently. If I was going to do this, I had to have a more expansive mindset, and start with a list of every possible thing I could eat.
So using all the information I learned online, I created my own worksheet. Similar to Julie’s approach on Planet Thrive, I created columns for all the food families. In each column I listed all the foods I could eat, and at the bottom, I made a list of all the foods in that family that I could not eat. I used that sheet (a new one every four days) to make my grocery list and plan my meals. By marking off what I had eaten at each meal, I was able to keep track of what to pack for breakfast and lunch each day. When I looked at in this way, it seemed imminently possible:
In case it will be of help, I’ve also attached the spreadsheet I made for myself (depicted above) at that time. I’ve provided Microsoft Word and PDF versions.
I did the rotation diet consistently for a number (4-6?) months, and I can tell you unequivocally that it makes AIP look easy. But as I started to feel better (measured in months, not years!), I gradually relaxed this way of eating. It has nonetheless left me very aware of how hard it is to establish sufficient variety in our diets, and the risks we create for our health if we get stuck in a rut with what we eat.
At the beginning of the summer, I was finally feeling well enough to raise my frustrations about my weight again with my doctor. She recommended that I start by eliminating all fruit (fructose). I cut out my occasional morning orange juice, fruit smoothies, bananas, berries, melon, and even the dried cranberries and blueberries I was putting on my salad. I was allowing myself one glass of champagne a month, and I eliminated that too.
A month passed and nothing changed.
I wasn’t surprised, but I was very disappointed. And, worried about what it might mean. I had a doctor’s appointment at least once a month, and now I asked at every appointment. I emailed my doctor the articles that I was reading about Hashimoto’s and weight loss, and made clear it was my top priority for every appointment. I am sure I was driving her nuts, but I had had it! Finally, lab tests revealed that I was developing insulin resistance (which, as I mentioned earlier) is a precursor to diabetes.
Based on my lab results (as well as the lack of progress from eliminating fructose), my doctor recommended I make further, significant changes in what I was eating. I was to eliminate all carbohydrates. I had successfully reintroduced rice, which I had to stop. I also eliminated sweet potatoes, and all the root vegetables I was eating including parsnips, parsley and celery root, rutabaga, and turnips. Not being completely sure of what was considered too many carbs, I also eliminated all squashes, including spaghetti squash, acorn and butternut, as well as zucchini.
My doctor also asked me to fast 16 hours at a time. That is not as bad as it sounds. It meant that after dinner at six o’clock, I was not to eat again until 10 or 11 the next morning. The change was extremely challenging at first; I was hungry all the time for the first ten days or so. In retrospect, I think delaying my breakfast was much harder than eliminating the carbs.
At the same time, my doctor encouraged me to add more fats into my diet. With my food choices being so restricted, it was hard. But I ate avocado more regularly, and increased the amount and variety of nuts I was eating. I also resumed making bone broth (still without carrots), which I drank for breakfast each day, supplemented with a tablespoon coconut oil. I read Dr. Mark Hyman’s book Eat Fat, Get Thin: Why the Fat We Eat Is the Key to Sustained Weight Loss and Vibrant Health, and I also watched Robert Lustig’s YouTube video entitled Sugar: The Bitter Truth, which has been viewed nearly 7 million times. I have not yet read his book Fat Chance: Beating the Odds Against Sugar, Processed Food, Obesity, and Disease, which has been recommended to me, and appears to touch on many of the same issues.
This wave of changes was just a few months ago, and it was pretty radical. I had eliminated a ton of food cravings and blood sugar ups-and-downs when I eliminated gluten in 2013, and again after starting AIP. I also thought I understood portion control from having done Weight Watchers and counting carbs. But this was another level of change entirely.
My food choices were unbelievably constrained, but surprisingly, after the initial adjustment, I didn’t find myself to be hungry. In fact, I found myself to be less and less so. And (even though I had to make sure I was eating the right kinds of foods), there were less choices, and it somehow felt way less complicated. And, food was somehow less important. That is consistent with patient experience Dr. Mark Hyman’s book
What was most exciting was that I lost two pounds each week for the first three weeks. It wasn’t a lot, but after gaining weight consistently for several years, I was over the moon! I knew finally that weight loss was possible, even if it was to be slow. After the inital loss I plateaued again, but every few weeks since then I have lost a little bit. I think the bumps up are flares, which for me usually result in a few pounds of weight gain (along with fatigue). This gentle downward slope has given me the patience to stick with these pretty radical changes, and to see if I can finally address the real reason I sought treatment so many years ago.
Eat Your Greens
I often get questions about my food, especially when I’m traveling with or meeting work colleagues. I tell them that I don’t eat gluten (or any grains), dairy, or soy, and that I have other restrictions as well. People look at me with amazement, and ask me what there is left to eat. The question seems funny to me now, because the answer is simply meat, fish, and vegetables. And people’s faces change – “Oh, well that’s not so bad!” But because as a country we eat so many processed and prepared foods, it is actually harder than it should be to eat in such a simple way when I am away from home.
One of the most inspiring things that I have read or watched in the past few years was a TEDx talk by Dr. Terry Wahls, which has been watched 2.6 million times. Some time ago, Dr. Wahls had been consumed by progressive Multiple Sclerosis (MS). In spite of access to the country’s most advanced medical care, she was unable to slow the progression of her disease. She was in a motorized wheelchair, rapidly losing her remaining mobility.
She began doing her own research, and as a result, she made radical changes to her diet and supplements. One of the things I remember the most from her talk is that she was eating multiple platefuls of leafy greens every day. She had learned that her body was severely depleted of the B vitamins, and she had determined that it was easier for her to absorb the nutrients she needed through food than through supplementation.
I would recommend watching the video if you can – she is one amazing lady! Some people with chronic disease prefer the Wahls Protocol to AIP, perhaps because she is such an inspiration, and she has personally shown it works.
Her presentation really resonated for me because, in spite of regular supplementation, there are some key vitamin and mineral levels that I have not been able to improve – notably magnesium and the B vitamins – in spite of trying a variety of brands and means of ingestion (pills, liquid, powder). Among other things, the B vitamins are used to convert food into energy. These low levels could help to explain many of the symptoms I’ve been combatting over the past ten years.
As a result of making these and other changes, Dr. Wahls was able to reverse her MS, and she began to walk (and eventually run) again. She is a wonderful inspiration, and a good reminder about the centrality of food in the healing of chronic illness. And, in all my reading and following of patient sites, I have never heard of someone being allergic to leafy greens. So eat as many as you can stand! In my case, I typically buy kale, spinach, and arugula, and I eat that (or a similar) mix of dark greens twice a day, along with meat or fish, and some nuts.
In the years since my diagnosis, I have been increasingly open about what I’m dealing with, in the hopes it will help others. I have met an extraordinary number of women and a few men who are dealing with some or all (or more!) of the miserable symptoms I’ve dealt with. What worries me the most is that all of those women are on Synthroid, they have never even had a complete thyroid panel, and absolutely none of them have been told that they are dealing with an underlying autoimmune condition that needs to be addressed before they can truly feel well again. By the way, there also seem to be plenty of women that take Synthroid and feel just fine – they can’t understand why it’s such a struggle for me to get my health and my life back on track.
It really bothers me that so many women are being failed by the medical establishment that they’ve put blind trust in, and I can only hope that by continuing to speak up, I will help more people find their way to wellness.
It’s been a long journey for me to get to this point, but I just couldn’t tolerate the alternative. Maybe because I was lucky to have felt so healthy and energetic when I was younger. In the past few years, we’ve made enormous changes in our household, for reasons small and large. We filter our water, we buy almost everything organic, we use toothpaste with no fluoride, and we no longer use dryer sheets (both have been linked to chronic health issues). And although we were not unhealthy before, our diet has changed radically. The changes we’ve undertaken are pretty radical on the whole – they are not for the faint of heart. Making and sticking with all these changes would certainly not been possible for me without the support of a loving (and also chronically ill) spouse and my patient family.
In spite of how difficult it’s been, I feel lucky to be doing as well as I am today.
And it’s a good thing I have more energy than I used to, because it’s taken a lot of stamina to actually get all of this written down! But if it helps at least a few people, it will have been worth it. If nothing else, I hope it will help you advocate for yourself and whatever it takes to achieve your own healing and long term wellness.
Last time I wrote about Hashimoto’s, I didn’t finish writing my blog post until May. At the time it was a huge achievement. This year, getting my post finished in February (only four days late!) is a tremendous improvement. I wish you such exponential progress in your healing as well. 🙂
Happy (belated) Thyroid Awareness Month!
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Thank you for sharing yet another very detailed update on not only where you are in your own thyroid journey and health, but also what you’ve found to be helpful in getting you to where you are and in all the progress you have made.
I always say recovering from thyroid disease is like putting a big jigsaw back to together. You’ve covered many of the possible pieces for thyroid patients here.
I just read this and it felt like you were talking about me, personally. Our stories are incredibly similar, and like you, my big three are mental clarity, energy, and weight loss. Even our EBV results were almost the same. I am currently struggling with my AIP because although I follow the diet religiously, and have made a couple of re-introductions, and i have eliminated foods I react to, I am still having reactions. These reactions are not as big as before, when they attacked my joints and leaving me almost unable to walk, they are still uncomfortable and i have no idea what it is. Is it the eggs I introduced and it was just a delayed reaction, or the bit of black pepper I put on my eggs, or was it the coconut oil I put in my green smoothie, or the cinnamon or cardamom (per Wahl’s) I also added? I feel like my life is one step forward, 2 steps back, before I once again move forward. I was actually doing research on following Wahl’s Paleo plus and Hashimotos and came across your blog. I ate all the carbs in my house and want to start her Keto diet, and much like your version, I am going to basically eat meat, fish, and green veggies. I am going to let my body rest for a week and try to add in some nuts for an alternate fat choice since i believe my current reactions stem from coconut milk. I appreciate more than I can say you taking the time to share your story because it is giving me hope that I can resolve my issues and feel better. Thank you so much!!
Jannike – thanks for taking the time to post. So, so many people read this post (thousands a year), but very few take the time to provide feedback. I’m glad hear it was of value to you. Definitely makes it worth it for me to continue put myself out there. 🙂
I hear you on one step forward two steps back. Keto was great for weight loss, but once I started chelating it was just too hard on my adrenals. I’m hoping to be able to get back to it when chelation is done.
There may be other things you’re sensitive to. Have you looked into FODMAPS, or histamine sensitivity, or thiol sensitivity? Sometimes, unfortunately, AIP is not enough … Hopefully if you can find a pattern with the inflammation you can figure out what else to eliminate so you can be pain-free.
Another thing to consider is whether it’s worthwhile to get the food sensitivity tests done. I know some people say they are not worthwhile, but for sure it helped me figure out things I would have never guessed in a million years I was sensitive to – random things like carrots and sage, for example.
Best of luck to you – I know it’s tough.