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AIP Stories of Recovery is a success story series about regular people from the Autoimmune Protocol community who are changing their lives using the protocol. Each month a new person is featured and readers have the opportunity to discover all the different health challenges that are being overcome by folks just like themselves on the same path. At Autoimmune Paleo we hope you’ll be inspired by, empathize with, and learn from these stories. If you are interested in sharing your story, please let us know by filling out our interest form.
In addition to managing symptoms of Hashimoto’s for years without a diagnosis, Sandy has also dealt with crushing infertility. In fact, it was her disillusionment over her inability to conceive that led her to finding the doctor who would eventually diagnose her with Hashimoto’s. Thyroid meds have been an integral part of her recovery, but it was only after a friend introduced her to the Autoimmune Protocol that her healing really started to take off.
What health issues are you dealing with, when did they begin, and how long did it take to get a diagnosis?
I have Hashimoto’s. Looking back, I can see signs and symptoms that things were “not normal” for about 8 or 9 years, starting in my early thirties. Anxiety and brain fog, for example. These symptoms crept up on me and I didn’t pay them any attention until other symptoms started showing.
A few years later fatigue, brain fog, insomnia, muscle weakness, and air hunger settled in, as well as infertility. Having trouble conceiving was the issue that led me to my diagnosis.
After my bout with infertility, it took about 5 years to find a doctor who ran the correct tests, asked the right questions, and diagnosed me with Hashimoto’s. I feel quite lucky that it “only” took this long.
I’m honestly not sure if other autoimmune issues are lurking. When I was diagnosed I immediately began making changes so things turned around for me and I did not feel the need for further testing for other AI disorders at the time. Nine years later, I still don’t feel the need.
Describe what the lowest point on your health journey was like.
My ex and I had lots of difficulties trying to conceive; we even went the IVF route. It was devastating to try month after month — only to keep getting a negative result on that pregnancy test. Doctors were dismissive and rude. Friends around me were having babies left and right, or so it seemed, which only made things worse at the time.
Despite the support of my then-husband and close family/in-laws, I felt very alone and isolated. As a result, I fell into a deep depression. I hated my body for failing me. I blamed myself because I assumed I waited too long or did something wrong along the way. I felt like no one understood me.
I remember not wanting to leave the house, not wanting to eat, wanting to eat everything, not wanting to see anyone or do anything, not being able to sleep. I just wanted to stare at the walls or the tv. It was pretty bad.
What challenges influenced you to look for a solution? Basically, what was the tipping point?
I was seeing many doctors, gynecologists, and reproductive endocrinologists when I was attempting to get pregnant. One gynecologist saw how depressed I was, and, as a last-ditch effort to “help” after one visit, offered me some depression meds on my way out of her office.
This really pissed me off, because I was NOT a depressed person by nature. I knew this to be true. I knew that my depression was circumstantial and that there *had* to be something else going on.
Her words slapped me back into the land of the living, lol! And this is when I started getting serious about my depression, my fatigue, and my other symptoms (infertility aside).
I finally found a doctor who listened to me, did the right tests and diagnosed me with Hashimoto’s. And what a relief it was to finally, FINALLY have an answer!
When you found a protocol to help you heal, what was it and what was your first indication that it was working?
The doctor who diagnosed me put me on thyroid meds and that was it. And I felt a little better for a couple of weeks, then backslid. I knew there had to be something else I could be doing, so started doing my own research.
Then, a friend introduced me to the good ‘ole Autoimmune Protocol. I was already mostly gluten-free so that probably helped me when I decided to go whole-hog into the AIP one spring. I didn’t notice anything really changing — everything was pretty subtle for me. Like the symptoms that crept in before I was diagnosed, symptoms were creeping out. So I didn’t notice much change. That is: until I started reintroducing foods after the initial elimination phase.
When I started reintroducing foods, the information came flooding in. I was having reactions — reactions that I never thought to put with certain foods. It was mind-blowing! Nuts gave me ear issues. Nightshades gave me stiff joints. White potatoes wiped me out the next day. White potatoes, who knew!
I had a “day of gluten” just because I wanted to test that one out (this was before I knew about the science of why we eliminate gluten), and that night I woke up drenched in sweat. Oh my, I had had night sweats in the past, but never attributed them to anything I ate! It was clear that my body was telling me something — and that I should listen. I did. No more gluten for Sandy.
Dairy was something I thought I’d be fine with. Being from Wisconsin and all, you know, we have cheese in our blood. If I said I couldn’t eat dairy anymore – well, I thought they wouldn’t let me back over the state line!
I tried to reintroduce dairy, and the reactions were cumulative. I remember waking up one day after a few weeks of having loads of dairy, thinking I could handle it, and then realizing that I had been seriously backsliding. I was feeling like crap and didn’t even realize it. The symptoms were creeping back again. I had some labs done not long thereafter and yep, my antibodies were through the roof. That was it, no more dairy for me (thankfully I am still able to sneak across the border past the Cheddar Curtain to visit family and friends up in Wisconsin).
This was 5+ years ago when I began the AIP; I repeated these reintroduction “experiments”(minus the gluten and dairy experiments, they were out for good) several times just to play around and see if things have changed. They did: now I can have a small serving of white potatoes and do just fine. And nuts don’t bother my ears anymore! The whole process was and is quite fascinating to me.
And I do have a bit of dairy once or twice a year (along with a nice helping of activated charcoal!) at celebrations or holidays. This is a conscious choice. The thing that I am still always so blown away by is that our bodies are amazing self-healing organisms. They WILL heal to the best of their current ability. We just have to give them the tools with which to heal.
The other parts of the AIP aside from diet were important for me as well; I now prioritize sleep over all else and really listen to my body when it comes to doing anything physically strenuous.Getting my thyroid meds optimized was also key for me. I was once very against meds, thinking I could just change my diet and call it a day. Nope. Wasn’t gonna happen. Once my thyroid hormone levels were back up to a good place, the fatigue was gone! Hair full again! Ah, I love my thyroid meds – they gave me my life back.
What resources have you used on your healing journey so far and how did you find them?
The friend who had introduced me to the Autoimmune Protocol also introduced me to the Facebook Group Hashimoto’s 411 (where I am now a Senior Admin). It was on the 411 where I learned of the Autoimmune Wellness website which became an oft-visited bookmark for recipes, articles on autoimmune disease, inspiring stories, and a place for support.
Mickey’s Autoimmune Paleo Cookbook was the first AIP book I had when first starting the protocol. We’ve since had Mickey host live events for us over on the 411 to discuss her latest book, The Nutrient Dense Kitchen, which is another fantastic resource.
Other resources I found were also discovered in the 411 group — Sarah Ballantyne, aka The Paleo Mom, is a super nerdy informational pot of gold (highly recommended her blog, books, cookbooks, and podcast).
Eileen Laird, aka Phoenix Helix, also has a wonderful podcast that is great for those just starting on their healing journey. She also has great “recipe roundtables” of the latest and best AIP recipes out there.
Chris Kresser and Self-Hacked are also great online resources to learn about the science-y side of things; both sites are usually well-documented with links to research and studies to back up or refute any claims that are out there (it can be confusing sifting through all the info that’s out there so I’m grateful for someone else to do the dirty work!).
Did your doctors suggest any treatments that you rejected and if so, why did you choose to try other methods?
I’ve “dated” a few doctors, and each of them offered things that got me to the next level. My first doctor had me on Levothyroxine but refused to prescribe NDT (Natural Desiccated Thyroid) for me. So I found a new doctor that would.
That doctor had me severely undermedicated, so I found a new doctor who would work within functional lab ranges to get me optimally medicated. I felt good but not great and wanted to continue “digging” into root causes. I casually mentioned heavy metals and he sent a test kit that showed up on my doorstep a few days later – I was pretty confused! It was obvious he was not really listening and not willing to tease apart everything that could potentially be going on – not *just* heavy metal issues.
So, I found a new doctor that would listen and take the time to do proper testing, not just throw one random test in my general direction.
My current doctor is fabulous. She recommended a whole barrage of tests which we discussed at great length; in the end, it was my choice to decide which I could afford to do at the time.
When the results came back, she had quite the list of supplements for me to buy. There was no way I could afford everything she suggested all at once. So again, we discussed and together we decided which would be best to start with and which to start at a later date.
I cannot stress the importance of finding a doctor who will listen and work with you to find a plan and strategy that works for you – not someone else, or not some cookie-cutter program that claims to help everyone with Hashimoto’s. Each of our bodies has its own personal history and chemistry – and this is not to mention how our own personal values and beliefs may align (or not) with our doctors. To think what works for one work for all is pretty short-sighted.
It can seem like our lives are consumed by a chronic illness, but there is so much beyond those struggles. What brings you true joy right now?
Helping others on their autoimmune journey brings me immense joy. There is no reason to be alone if you are feeling confused, overwhelmed, or frustrated by your health concerns. Support is a few clicks away. I love being able to listen and support my coaching clients in whatever way resonates with them. I also recently finished running my first online group course, “Reimagining Hashimoto’s”, which was exhilarating and gratifying.
Past that, so many things bring me joy these days… such a far cry from when I was depressed and unable to get off of my couch! I truly think of my Hashimoto’s as being a gateway into allowing me to receive so many gifts in my life that I would not have had I not acquired this disease. For example, I am eating better than I ever was prior to my diagnosis, and more in-tune with my body than I have ever been in my life. What a gift this is.
And, riding my motorcycle brings me insane amounts of joy. I love traveling up to Wisconsin on my Triumph Tiger 800XC to visit family or just ride around the beautiful countryside. Gets me out of my head, which is not a bad thing considering this crazy world in which we live. 🙂
You can connect with Sandy and learn more about her healing journey on her website, Autoimmune Nutrition Coach.
Would you like to share your Story of Recovery? Let us know by filling out our interest form.