AIP Stories of Recovery: Kate’s Recovery from Hashimoto’s and Wegener’s Granulomatosis

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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.

Kate’s Hashimoto’s symptoms improved initially thanks to thyroid replacement therapy, but over time they just seemed to be getting worse. As a medical doctor, Kate was interested in holistic health and determined to get to the bottom of her symptoms, and in the process, uncovered a second diagnosis, Wegener’s Granulomatosis. In 2020, she devoted herself fully to diet and lifestyle therapies and has reversed many of her symptoms as a result. 

What health issues are you dealing with, when did they begin, and how long did it take to get a diagnosis?

Hashimoto’s thyroiditis, PR3 ANCA positive (associated with the vasculitis Granulomatosis with polyangiitis).

My health issues started with chronic sinus infections which I would get every few months in my early twenties. Since they never really interfered too much with my life back then, I carried on in blissful ignorance that everything was just stress-related.

Then in 2018, I developed a really bad chest infection for six weeks that just wouldn’t get better. I eventually consulted a lung specialist who told me I have the early stages of a lung condition called “bronchiectasis”. Being a medical doctor myself, deep down I knew something was not right but was in complete denial at that stage that I might actually have a chronic illness. My symptoms went away almost immediately on a short course of steroids and inhalers, and I was very relieved to be able to put it behind me and go back to my heavy work schedule. I never went for any follow-up with the specialist, even though he was concerned about my scans and wanted to do further investigations. Around the same time, my thyroid function came back abnormal and I was diagnosed with Hashimoto’s thyroiditis. I believed all my symptoms were due to my underactive thyroid, and many of the symptoms such as hair loss, fatigue etc did actually improve on thyroid replacement therapy.

Over time though, despite taking thyroid replacement therapy and my endocrinologist being happy with my thyroid function, my health just seemed to get worse. I experienced different symptoms on an almost weekly basis: one week it would be joint pain and swelling, the next I would feel totally exhausted, or have strange tingling headaches and constant eye and leg twitching. I started researching everything I could about autoimmune disease, but felt so hopeless reading conventional medicine descriptions and papers that I decided I had to find an alternative approach. Since I have always been interested in a more holistic approach to health, the AIP diet just made sense.

It was actually only after I was quite far along my healing journey which included the AIP diet, that I got the emotional strength to actually get a full auto-immune screen done. My bloods did confirm a positive PR3 ANCA, specific for a very rare autoimmune condition called Granulomatosis with polyangiitis, more commonly known as Wegener’s Granulomatosis.

Describe what the lowest point on your health journey was like.

Before I got really sick, mysterious symptoms started appearing out of nowhere: one Sunday morning my husband took me to the emergency room when my pulse rate was so high I was asked if I had been taking diet pills! The normal work-up for cardiac conditions did not show anything abnormal, and I was sent home with a diagnosis of anxiety. Another low point was the first time I ever experienced tingling/numbness of my left foot after going on a hike. I started to think these symptoms were all in my head, since even as a doctor I had very little knowledge of what autoimmune disease felt like. The numbness in my left foot became constant, and I started having muscle twitches that just would not go away to the point where I dreaded sitting or lying still. I think for me the most frightening part of the whole experience was the unpredictability of the symptoms and the fear that I would just get progressively sicker over time.

What challenges influenced you to look for a solution? Basically, what was the tipping point?

By the time a really busy work project had ended in 2020, I was just too ill to work: I had really bad “brain fog” and most days the most I could concentrate was trying to focus on what my husband was saying when he got back from a busy work day. The reality dawned on me that I might never be able to work again and that my symptoms could possibly just get progressively worse. I was prepared to do whatever it took diet-wise to try and heal.

Being in the midst of the Covid-19 pandemic, and having my own fears about getting any further diagnosis, it just didn’t seem the right time to book an appointment with a specialist for non-urgent and seemingly unrelated complaints. Also, the idea of possibly being started on toxic long term immunosuppressant therapy with all its side effects was just not an option to me. After several weeks, I decided to stop researching all the diseases that I feared I might have, and decided to only research positive success stories regarding autoimmune illness, which led me to finding Micky Trescott, Angie Alt, and a whole wonderful community of AIP followers as well as Mickey and Angie’s AIP coaching course which I eventually completed!

When you found a protocol to help you heal, what was it and what was your first indication that it was working?

It actually took me three attempts to get the elimination stage right. The first time around, I refused to give up coffee. When I did eventually did give up coffee (though I still drank the occasional cup of black tea) I felt understandably so much worse initially for weeks as my body adjusted, but then gradually I started feeling like a dark cloud had lifted and more “normal” again. Each time I got to around 6 weeks, I would feel better, but the more “normal” I felt the more difficult I found the diet to stick to so would end up taking chances without going through the re-introductions. Finally, I decided to give it my all and was totally compliant with the elimination phase for around 3 months. It was definitely not easy, and had a huge impact on my social life since I ate all my meals at home without exception. Possibly being in the midst of an ongoing lockdown, and also not working and travelling, made that part slightly easier.

I found freezing meals helped so much, and labelling containers so that my husband would know which were strictly AIP. Then there were those go-to meals for when I was feeling tired or generally low, such as sweet potato, tinned tuna and a whole avocado which became a staple go-to at any mealtime. I included vegetable soups with bone broth at most meals, and even tried chicken liver once a week. For sugar cravings, I had to be really careful not to overdo the treats so would stick with AIP flatbread with cinnamon and sometimes a tiny bit of honey when my sugar/ carb cravings hit, rather than baking too many delicious AIP goodies.

I always tried to focus on seeing my food as my medicine, and wholesome, unprocessed fresh food as the main source of my micronutrients. In terms of vitamins/ supplements, I did find a regimen of generally AIP-friendly vitamin formulations where possible which seemed to really work for me, and which I adapted to my symptoms. For example, I included high doses of Vitamin V12 for nerve healing since my levels were “within normal range” according to the lab, but still on the low side, as well as daily Omega-3 fish oil supplements for my joints. Generally though, I avoided supplements with unknown benefits or anything that might be pro-inflammatory.

With regard to the peripheral neuropathy symptoms which were the most frightening, I actually can’t remember when they totally disappeared but I do remember going for a walk one day less than a year after the onset of my symptoms and smiling to myself when I realised I had walked across a bridge made of rocks without even thinking twice, something I would never have been able to do when I had the numbness.

What resources have you used on your healing journey so far and how did you find them?

I was so fortunate to have found the Autoimmune Wellness website and other AIP resources. Both Mickey Trescott’s book “The Autoimmune Handbook” and Dr Sarah Ballantyne’s book “The Paleo Approach” became my go-to for helping me wade through the minefield of what I was allowed to eat, planning meals etc. Having a hard copy of each of these books also kept me off the internet, which in itself was one the most important steps in my healing process in terms of staying away from identifying with worst-case scenarios and general panic flight/fight mode.

Other tools I used were meditation (the Insight Timer App became a trusted friend when I was feeling overwhelmed) and I also worked with a mindfulness coach/ therapist who focused a lot on self-compassion. I learnt the technique EFT, a tapping technique that I combined with positive affirmations, as well as QiKong which I found more gentle than yoga and which became a wonderfully calming form of meditation that I still do on a daily basis.

Did your doctors suggest any treatments that you rejected and if so, why did you choose to try other methods?

By the time I did eventually have a thorough assessment, my specialists couldn’t actually find anything suggestive of active Wegener’s and did not suggest any conventional medical treatment at that stage.

For my Hashimoto’s I do take thyroid hormone replacement therapy daily. If I was recommended additional treatment in future, I might consider it since I am now open to all the healing options available to me, but I would definitely do so with caution and diet will always be my first approach.

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?

Besides the obvious physical improvement, such as being able to hike and walk with literally no peripheral neuropathy or fatigue afterwards, I think for me it’s the little things: having a sense of freedom that each morning I can wake up without my first thought being what new symptoms I have that day and not living in constant fear of chronic illness ruling my life. Even though I know autoimmune disease can flare up at any point, right now I pretty much lead a normal life! I am also so blessed to actually be present for my marriage, and am grateful for the way this whole process has made my relationship with my husband even stronger. Even though I have gone back to doing sessions at a busy GP practice, I am slowly changing the way I practice, and have started working with autoimmune clients where I am focusing on longer, more individualised sessions. It is so rewarding to be able to provide my patients with the tools for healing from my own experience of autoimmune illness rather than just hurriedly making a diagnosis and prescribing pills or treatment as I had practised for many years.

Overall, it has been a spiritual journey for me, and I now have faith that everything happens for a reason and that I have the tools to manage any further challenges in my life.

You can get in touch with Kate at her email: [email protected].

Would you like to share your Story of Recovery? Let us know by filling out our interest form.