My Journey with Hashimoto's
Friends, if you saw my Instagram Stories yesterday, you'll know that I got some exciting news that my Hashimoto's antibodies are no longer showing up on my scans and I currently am in remission. I wrote most of this post before yesterday's doctor's appointment (with the exception of the part about my next steps), so you'll see that I talk in this post with the mindset of not being in remission yet. I wanted to keep it this way, as it was important to me to accurately represent the true journey of this process, and not just in retrospect.
I've put off writing this post for so long. I think that a part of me was almost hoping I'd reach the "finish line," of my autoimmune disease, so I could almost tell my story in retrospective reflection. I'm sure any of you who have a chronic disease reading this right now are chuckling to yourself, as I now am too-- because it's exactly that: chronic. It's not like a cold where you just get over it one day and are cured. There is technically no cure of autoimmune diseases like mine (yet), only management. Some people have gotten themselves into remission, but I am not there yet.
But it's also important to me to talk about this stuff in the NOW, rather than in retrospect because we tend to forget or gloss over the not so pretty details once we're on the other side of the hurdle. And I don't want to tie this story up in a pretty pink bow, and share it-- I want to show you what's really there. I have a strange relationship with my disease. Sometimes I hate it and curse it, and other days I am grateful for it. I don't know if that will ever change, honestly, but I am learning to just ride the journey out with it by my side as long as it wants to stay there.
Struggling with health is not a foreign concept to me. I've had countless sprains, breaks, stitches, 3 concussions, bad allergies, a hip surgery, and an eating disorder. But my Hashimoto's autoimmune disease and journey has been an entirely different animal to live with, for me personally. There are 26 million of you with autoimmune diseases out there, so it is no small crowd. I love the phrase, "autoimmune warrior," as the noun to describe us-- because that is exactly what we are. I'm sharing my story with you today in hopes that anyone who is struggling to find out what is wrong with them, struggling with a new diagnosis, or whatever, can feel a little less alone and a little more hope.
I am not a doctor or medical professional. None of this information presented below is to be taken as medical advice or protocol.
I am simply sharing what I have found to work for me personally, how my journey unfolded, and my personal opinions on these things pertaining to autoimmune disease.
The Beginning: A Week to Remember
On May 15, 2014, I had hip surgery. I already knew that the next 6 months of my life were going to be dedicated to learning how to stand, walk, and move again, but I had no idea that 3 months into my rehabilitation, an even larger mountain would loom before me.
In August, I had just returned to my work as a trainer at Equinox a few weeks prior, and training 30 sessions per week. I was starting to get back into my groove, had just actually launched Living Minnaly, then suddenly my world turned upside down.
Within one week, I ballooned up 10 extra pounds, then rapidly lost it. When I got home from work, I would sit on the floor of my entryway to my apartment, and sometimes would fall asleep laying on the hard wood floor because the thought of walking to my bed was too exhausting. If I had even an hour break between training clients, I would come home to nap. My face broke out into hormonal acne like nothing I've ever seen before- every centimeter of my face had small bumps or painful cysts. I had such brain fog and oscillating blood sugar spikes and crashes. Upon waking, I had to wait a few minutes to stand up from my bed because it felt like I was stepping on knives when I put my weight on my own two feet. I was so inflamed that I felt like I was wearing a sumo wrestler suit on top of my body.
The search for help
I thought maybe I ate something funny or I was getting sick, so I tried to wait it out. But after about 2 weeks with no changes, I suspected it had to do something with my hormones (from my knowledge as a trainer of the body's systems, combined with my symptoms)
I scheduled an appointment with an endocrinologist I found online. I had gone to NYU before for my diagnostic exams for my hip, so I went there first. I met with an older male doctor who was extremely dismissive and barely examined me. After just looking at my chart, he said that my thyroid hormone levels were a little low so I could go on Synthroid if I wanted to. With barely any explanation of why this was happening, what hormones were responsible for this, exactly how low mine were, and what the heck Synthroid was supposed to do to help me, he somehow expected me to make my own call on my treatment. I left that office feeling shocked at the incompetent attitude towards my pretty severe symptoms. I also met with a second doctor who essentially did the exact same thing.
I knew I was too miserable, sick, and depressed to not do anything about it in the meantime while I searched for the right doctor. I started googling hypothyroidism and holistic approaches to help support my body's systems.
The First Steps + Struggles
I felt like my body was just so overwhelmed and overtaxed. You know when you have a horrible bruise, the slightest little touch can feel like radiating pain? That is the way my body felt all of the time. I formerly could house a pint of Ben & Jerry's and not even experience slight indigestion. But now? Drinking chicken broth or eating a salad even felt irritating to my body.
I already ate pretty healthily as a trainer and aside from some fruit allergies, I had never had any food intolerances or allergies in my life. But I was desperate to stop feeling as miserable and sick as I was feeling, so I decided to do my own version of an elimination diet. I started by nixing coffee, gluten, dairy, nuts, and legumes. I started taking a multivitamin, fish oils, and vitamin D that I was deficient in. I didn't have any practice or familiarity with eating this way or being so regimented-- especially considering that I had worked so hard in therapy for my eating disorder to lift restrictions off foods.
I suddenly felt paralyzed by food, and it was also a huge struggle since the food-blogging aspect to my blog was taking off as an editor for thefeedfeed and working a couple freelance clients. And keep in mind that in 2014, almond milk was barely making an appearance in coffeeshops, let alone the insane gluten-free and dairy-free options we now have everywhere.
It felt like a very isolating time, to be honest. I didn't know anyone who had similar issues, and I still didn't know why this was happening to me. I didn't allow myself to go out to dinner with friends for fear I'd have a setback because the restaurant would put something into my food I didn't know about. I was so ashamed of my acne in particular, especially working with my training clients in the very bougie SoHo Equinox-- I thought it made me look like I didn't take care of my body, so what kind of role model was I? My weight was also still fluctuating, and I had barely enough energy to stand up, let alone workout. I then got put on a birth control pill by my dermatologist in an effort to control my acne [future me is shaking her head right now, but more on that later].
2015: The first wave of improvement
I started to accept that this might be the way I had to live for awhile. I cut my hair short to stop hiding my acne so much, I stopped resisting the elimination diet and just went with it. My symptoms started to clear up and I started to slowly feel normal-ish and pulling out of my depressive state by that December of 2014.
Then 2015 came around. I helped open up the Brookfield Place Equinox, I fell in love with a boy, I finished physical therapy for my hip surgery, and I was training for my StrongFirst certification. My symptoms of inflammation and acne disappeared, and I thought I had "healed" myself! I determinedly re-incorporated all of the foods I eliminated. I was happily drinking full fat cappuccinos and eating croissants at coffeeshops, greek yogurt, and almond butter smoothies. I forgot all about the multiple supplements I was taking before. All was well, and I started to think of my illness as a random occurrence. I still hadn't found a doctor to fully, properly diagnose me, but was feeling apathetic about it because my symptoms were gone-- so why did I need to [future Minna also shaking her head here]?
Just kidding. By year's end, my acne, my lethargy, and the struggle to keep my body fat down all came back, and suddenly everything was making my gut irritated again. I felt frustrated, but the problem wasn't "as bad" as the initial onset of it all, so I half-heartedly avoided gluten. I had started supplementing with collagen this year to help increase my protein intake and I noticed little benefits like reduced joint pain, better digestion, fast healing from my acne, and strengthened nails.
But things were still not in a good place overall. I finally just asked a general practitioner to test for Hashimoto's, because having heard of my old boss's wife experience the exact same symptoms as me, I suspected this. I tested positive for the TPO antibodies in my blood, and the fitting thyroid hormone profiles, and now had a diagnosis. But my doctor admittedly did not know how to advise a treatment plan for Hashimoto's, so off I went in blind search again for another doctor and left to my own devices.
2016: Plateaus + acceptance
2016 was just a really hard year, personally in my life. My dad's liver cancer came back, eventually leading to him passing away in August. I was in a tumultuous long-distance relationship, my body felt like it was slowly failing me, my career felt like it was stagnating, and I was fighting depression from dealing with all of this. I was working out like a fiend, to cope with everything and honestly, I am so thankful for that because I don't know if I would have gotten through the year otherwise.
Health-wise, things got weird. I had had bouts of eczema-like rashes and itchiness back in college, and it came back. My acne wasn't improving (started to even get acne on my back, which I never had gotten!), and my joint inflammation was starting to get worse. But my energy and brain fog were the worst of all. A physician friend of mine said I should start looking into managing my gut health because it sounded like I had leaky gut, which often accompanies autoimmune disease. I started eating loads of greens, fermented foods, and taking a better probiotic. I finally admitted to myself that gluten and dairy were really not helping my cause here, so I nixed gluten entirely- but if I'm being honest, I didn't fully drop the dairy until 2017, but I did eliminate it mostly.
I was starting to feel a little better but then I started working golden milk into my diet and adding collagen to it [shared my story on that process over on mindbodygreen here and 'tis the birth of Live 24k]. That's when things really took a turn for the better. My digestion improved, my acne inflammation and severity died down, my joint inflammation disappeared, and mental fog started to lift. Then I started switching certain body care and skincare/makeup products to all natural products, to eliminate those endocrine disrupting chemicals from my life [blog post on that process here, but my recent product favorites here]. I got my first plants for the purpose of cleaning toxic chemicals out of the air [here is NASA's guide for the best houseplants for purifying your air]. I still hadn't find a doctor I liked, but I was a bit preoccupied with the other personal matters in my life to take that search on too. Plus, after going to the doctor nearly every week with your Dad, the last place you want to go is to find another doctor.
I really started to embrace and not fight my Hashimoto's diagnosis, and essentially pushed myself to befriend it. Instead of looking at it like this horrible thing that had unfairly happened to me, I started to practice the mindset of accepting this disease that had occurred in my body because it was trying to protect itself; which is essentially what it is.
I focused on eating whole foods: completely no gluten, no dairy, then cutting back refined sugars (mostly, because girl needs herself some vegan Van Leeuwen once in awhile), LOTS of veggies and protein, healthy fats, and gut-healing / anti-inflammatory foods like my Golden Fuel. I definitely was feeling better than I had ever before since getting my diagnosis, but I still felt like things weren't where they should be, given all my efforts. I used natural body + household products, utilized stress-management practices, ate in line with what I was supposed to, exercised, yet my progress with my acne and difficulty managing my weight was not matching the amount of effort put forth. Granted, I was launching a company and so stress and sleep weren't stellar, but still. It felt like I had to work so hard to even be at the baseline of what healthy people just wake up to every day without extra effort.
I started feeling a little hopeless, wondering if this was just something I had to accept. Then I decided no thanks, that has never been me to just sit back and let things happen. So I got a stellar recommendation from my friend Alison for a functional medicine doctor, and went in for the gamut of testing to finally figure out exactly what I need.
NOW: My new diagnosis, prognosis, and plan of action
So I didn't expect this. I thought I was going to go into my doctor's appointment yesterday to get an additional diagnosis of PCOS. Instead, I got told that my blood is no longer showing any signs of Hashimoto's antibodies or any other autoimmune antibodies (like Reynaud's, which I also had starting in college)!
However, this journey is far from over-- it's more just like a new page of it. I still have low T3 hormones as my body is not coverting T4 to T3 like it should, and my hormones during my cycle are not what they should be. My ovulation is delayed and where my progesterone should be at its highest during my cycle, it plummets to the lowest it ever is-- which helps explain the severe PMS symptoms I've been experiencing (debilitating cramps to the point of being unable to sleep, headaches, bloat, acne). I'm also deficient or low in vitamin D (very severely- optimal range is 60-80 and I'm at 13 LOL), zinc, homocysteine, complex, iodine, and selenium. My body is also having issues with generating ferritin (the bioavailable version of iron).
I'm pretty proud though of the fact that my inflammation markers are WAY down and actually even look good-- I don't have the research studies to back it up but I don't think my turmeric obsession with my Live 24k is a coincidence! Also, my docs said they rarely see anyone with good levels of omega-3's but I have excellent levels of that and cholesterol. Diversity of healthy fats and egg yolks for the win, y'all!!
So what is the medical plan now?
Continue eating exactly the way I currently do, just extra protein consistently throughout the day with a higher protein breakfast in the morning, in particular. My blood sugar levels were higher than I would like, even with my generally low sugar diet, so I'll be more mindful of my sugars and starchy carbs that can spike my blood sugar. Then I'll continue on my supplements like high quality fish oils for EPA/DHA, vitamin D, a probiotic, and will use digestive enzymes during meals. In addition, I'll be taking higher vitamin D IUs, zinc, iodine (for thyroid), homocysteine, and selenium (for thyroid).
I'll soon be starting on a progesterone (not to be confused with synthetic progestin, in the birth control pill) protocol, to address my cycle imbalance which will be helped too by my other supplements. Doc says I should be feeling quite differently in 3-6 months, so I'm anxious to see how my body changes!
One thing about all thing things I do now:
As you guys can see, a lot of what I now do in my daily diet is a culmination of adding and eliminating things over the process of 3 years. It didn't happen overnight, and it can be extremely intimidating or overwhelming to try to tackle all that at once-- had someone told me in 2014 to eat and live exactly the way I do now? I might not have been able to do it, because it's so overwhelming. My advice is always to take one habit change at a time, nail it, then add another in. Trust me, you (and your body) would rather slow and steady towards success, rather than yo-yoing with progress.
So now, onto the questions you guys asked me that I didn't yet fully answer in this post!
Is it possible to cure Hashimoto's?
As things stand right now, there is no "cure" for most autoimmune diseases, including Hashimoto's. I do know of people who have put their symptoms into "remission," and my doctor has told me of patients that have had their antibodies that indicate Hashimoto's presence (TPO), disappear from their blood after following certain personalized protocols to get their bodies and specific deficiencies balanced out.
However, just because you get into remission, doesn't mean that you can just pretend it never existed and treat your body poorly without care. Your symptoms will likely come back if you do not continue to care for your body the way you did to get it into remission in the first place.
*Addendum as of yesterday: After speaking with my doctor about remission, my answer still stands.
Is Hashimoto's something you're born with or that you develop with time?
Sadly, we don't know this yet. This is one of the frustrating mysteries about autoimmune disease, is that much of the time, we don't understand what causes it or activates it. This is why I hope to change this-- as soon as Live 24k is advancing to a certain degree of stability, we hope to start putting some proceeds towards research for autoimmune disease. It feels absolutely insane to me that most of the Hashimoto's warriors I know were the ones to essentially figure it out and bring their conclusions into the doctor for confirmation.
I personally strongly feel that autoimmune disease is similar to cancer for a few reasons. They both begin because healthy cells + tissue start to mutate and start attacking other healthy cells + tissue. We are all born with certain genetics that predispose us to certain diseases, immunity, etc. but our lifestyle choices (nutrition, physical activity, environmental factors, drugs, sexual health, mental health) can encourage certain genes to get triggered in a malignant manner. Or sometimes it's just luck of the draw with genetics. We all know those stories of the healthy 95 year-old grandma that smokes a pack a day and has bacon every morning, or the 20 year old cancer survivor who was athletic, eats clean, and leads a healthy lifestyle.
What we DO know though:
Over 26 million Americans have one of over 100 different autoimmune diseases. And women make up 85% of that number. Certain autoimmune diseases can be triggered by environmental factors, inflammation, viral infection, or other unknown causes. But it is possible for autoimmune warriors to manage their illness with various personalized protocols.
Are you on medication?
I have never taken any traditional thyroid medication like Synthroid. But that's not to say that I don't believe it is necessary for some people! Each person should work with their doctor to figure out what works.
Currently I am on a very low dose of an anti-androgen, spironolactone, that I have been on for about 1 year now to help control my hormonal acne, although we are looking to get me off of this. I supplement with high quality fish oils for EPA/DHA, vitamin D, a probiotic, and will use digestive enzymes during meals.
*Since my doctor's visit yesterday, I will be additionally supplementing with a number of nutrients I am either deficient in or my body is having issues converting/using, such as selenium (to aid my currently not great T4 to T3 hormone conversion), zinc, iodine, homocysteine (a wide range B vitamin complex), a much higher dose of vitamin D (I'm so deficient, it's almost laughable), and ferritin. We will then soon be starting some hormone treatments of progesterone (not to be confused with synthetic progestin, the stuff in birth control) because my cycle and hormone levels are not what they should be.
Things you would change about your journey?
I would never say I'd change anything about my personal journey with Hashimoto's, but there are a few things I wish I had known earlier. There are some things I certainly wish I had done better or more quickly, but some of that was a part mental journey with all this that couldn't be rushed along for me personally.
Reconsider birth control- my body has never reacted well to birth control, and I jumped on it out of desperation to cure my acne. It's not something you should just hop on and off of, for the sake of your hormonal balance, and it's a bandaid for a lot of issues IMHO.
Find a better doctor, earlier- don't be scared to fight for what you know in your gut. If a doctor is telling you that you're fine, but you know something is not right, keep asking around for referrals and seek help. A proper diagnosis earlier would have saved me months, or even years of struggles.
How do you get diagnosed?
It is hard to tell from general blood tests done with your general practitioner during your annual blood exam. Sometimes they test you for your T3, T4, and TSH levels, but even those tests can only tell you so much. You need to get specific blood testing done to look for specific antibodies (TPO) indicative of Hashimoto's. If those show up, in addition to more specific testing for low levels T3 (free + resin uptake), T4 (free + total), and elevated TSH.
It is easy to get dismissed, as I was because my T3 levels were initially not too far below the range of "normal." But as any hormone specialist will tell you, there is a massive difference between "normal" range and "optimal" range-- just look at the discrepancy in this example chart [below]. If you feel that something isn't right, keep advocating for yourself. You know your body best and if you feel like something is wrong and your doctor isn't being helpful, go seek a second professional opinion.