“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 email us through the contact form.
Meet Nona! Nona has been familiar face and active member in many online AIP community groups, eagerly sharing her story to give hope to newcomers for well over a year now. Her primary AI is Hashimoto’s Thyroiditis, which plagued her for years with no relief in sight. Nona did not give up though and once she had answers, her recovery rocketed forward.
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 Thyroiditis, eczema, Blepharitis, and asthma, and recently dealt with Candida and Trichosporon overgrowth.
The fatigue began back in the late ’70’s, along with an inability to ever get warm. I routinely wore a wool jacket on warm NYC summer evenings! The eczema showed up in the early ’80s and got worse with stress. It was treated as a dermatological aberration rather than a symptom of a systemic issue, even though at that time I also had routine ear and eye infections, and suffered constantly from working in a “sick building.” I had tests at the ENT hospital, but I didn’t go back when I thought they said something about AIDS. Could they have said “autoimmune disease?” In ’98 I moved to New Zealand to follow my heart. The fatigue was worsening, and made it difficult to settle into a new culture. In ’99 the doctor put me on antidepressants and sent me for counseling — for 12 years.
The year I weaned myself off antidepressants, I became a vegetarian, believing it was “better for my body and for the planet.” By then my rough skin was flaking off all over my body and my brittle hair was falling out by the handfuls. I had no outer eyebrows and was puffy and swollen all over. I had also developed asthma.
According to the doctor, I was “fine” and needed to eat less, lose weight, and lower my cholesterol. In 2012, I went to the doctor determined to get treatment for what I now believed to be a thyroid issue. She assured me my thyroid was “fine” and had been “worse,” but when I demanded to know what other illness could be causing my symptoms, she agreed that it looked like hypothyroidism and started me on 25 mcg of Levothyroxine. She didn’t test for antibodies.
I was on Levothyroxine (raised to 37.5 and then 50 mcg) for over two and half years with no more relief from my symptoms than I had had from antidepressants. I had lost most of my body hair and could not sweat at all. And I had suddenly gained 50 pounds! On a vegetarian diet! I put myself on a low-carb diet and went back to eating meat, but still felt awful and could not budge an ounce.
Then my husband was offered a great job overseas. Fat and lethargic, but believing I was now being properly medicated, and that the fat and lethargy were “my fault,” I somehow packed up our household and moved to the UK.
My new doctors continued the Levothyroxine without concern. The only tests I had were for TSH. My hair was still falling out, my skin was flaking off, my joints were hurting, and I was starting to walk with a cane. I was having physiotherapy for my knee. I was advised to get more exercise and lose weight.
A friend recommended the Whole30 diet; I was desperate to try anything, even if it meant giving up processed foods and cooking every meal from scratch! I read about dietary issues with thyroid disease in the Whole30’s online information and about the Autoimmune Protocol diet, and began to wonder if my thyroid issue could be autoimmune. I was visiting the US at the time and decided that once I got home I would start the AIP and get my antibodies tested.
In January of 2014 I started AIP and two weeks later got my antibodies tests back: positive for TPO antibodies, “consistent with Hashimoto’s.” When I told my sister and mom, they said they both have Hashi’s, too.
Describe what your lowest point with your health journey was like?
It was really the pits. It was winter of 2013 and I was living in London. I visited Los Angeles for the Christmas holidays, but didn’t have any energy to see friends or do anything much. And I was having trouble driving — my eyes were so dry and irritated! I was pulling over every ten minutes to put drops in my eyes, but it didn’t seem to help. I got winded walking up stairs.
When I got back home to London it was worse. I would make my way from my bed to my chair in the living room and just sit there. If I stood up, I couldn’t remember what I had stood up for! I was too tired to cook or clean, and couldn’t even manage the grocery shopping any more — I would forget to get off the bus or the train at my stop!
I couldn’t remember anything at all; I kept my smart phone with me at all times, because I had to make a note of what to do and when to do it. I wrote lists for my doctor, because I couldn’t remember my symptoms. And all this time the National Health Service doctors I saw told me I was “fine,” my symptoms were all in my head. I was “getting older” and this was “normal”.
Having begun reading about thyroid disease, I asked my doctors to test my thyroid hormones to make sure I was converting the T4 medication I was taking to the active T3, but when one doctor finally ordered the test, the lab didn’t process it. I begged for a referral to an endocrinologist, hoping to get FT3 and FT4 tested. I was advised to increase my Levothyroxine to 75 mcg, but when I asked why I would do that when we don’t even know if I’m converting properly, I was ignored. When I asked for low dose Naltrexone to lower my antibodies, the doctor actually laughed.
In the UK, we pay for the National Health Service through our taxes; I began to suggest to my husband that I should see a private doctor even though I would have to pay out-of-pocket.
After months of no joy from the NHS, he reluctantly agreed. I sought recommendations among other thyroid patients online, and contacted an integrative doctor in north London. It would be six weeks before I could see him.
What challenges influenced you to look for a solution? Basically, what was the tipping point?
There wasn’t a specific tipping point; it was cumulative. I wasn’t getting the help I asked for — and relied upon — from the medical establishment and I suspected, from my reading, that my thyroid disease might be autoimmune. I knew about the genetic component of AI disease; my father had had RA and ALS. I assumed I had intestinal permeability; I had done too many courses of antibiotics for UTIs, eye infections, and ear infections, and one time I had been in hospital for nine days being pumped full of gram-positive and gram-negative antibiotics for a pelvic inflammation. I was taking twice the maximum dose of Aleve every day to keep the pain at bay. I felt just plain horrible and I didn’t want to live like that. No wonder we get told we’re “depressed!”
When you found a protocol to help you heal, what was it and what was your first indication that it was working?
I started the AIP on the 10th of January 2014. I had been taking twice the maximum dose of Aleve every day for over ten years just to not hurt all the time. AIP eliminates NSAIDs and in giving them up I anticipated the pain would be excruciating. However, within three days, literally all my muscular and joint aches and pains were gone! I had been receiving physiotherapy for the pain in my knee, and had been walking with a cane! Suddenly I was pain-free. That was my first indication that it was the food I had been eating that was a problem and that the AIP would help.
After a month on AIP, I noticed my brain fog was lifting. I had been trying to research thyroid disease, adrenal fatigue, LDN, and other topics I had come across, but would find myself reading the same paragraph over and over without comprehension. Now I was not only comprehending, but also retaining what I’d read.
After three months on AIP, my clothes were quite loose. I had lost only seven pounds in weight, but several sizes in inflammation! I couldn’t believe that simply eliminating certain foods could make such a big difference! I decided to stay on AIP until my Hashi’s went into remission.
What resources have you used on your healing journey so far and how did you find them?
There are so many! Some I found through word of mouth, and others through my own research. First and foremost, Facebook! I belong to many fabulous groups that share information about the AIP, thyroid disease, autoimmunity, and Hashimoto’s. Connecting with others who are also on this journey has been a lifesaver! Next would be the many books and articles for the layperson about thyroid disease, Hashimoto’s, autoimmune disease generally, and the AIP. I used Stop the Thyroid Madness’ website to learn about thyroid disease and alternatives to T4-only treatments; James L. Wilson’s book Adrenal Fatigue: The 21st Century Stress Syndrome, to make lifestyle changes to support my cortisol rhythm; Sarah Ballantyne’s book The Paleo Approach, to understand the science behind the AIP; Mickey Trescott’s The Autoimmune Paleo Cookbook and Angie Alt’s The Alternative Autoimmune Cookbook, for ways to make AIP work for me in the kitchen.
I also made use of Thyroid UK, which sponsored the first UK Thyroid conference last year, and the London Group of the British Thyroid Foundation, which organizes talks for its members. Other great resources include the wonderful Rhug Estate’s stall at Borough Market where I buy delicious organic pastured meat, wild game, bones and offal, and receive tips on how best to prepare them; and the many farmers’ markets all over London where I buy locally sourced, organic vegetables and fruits.
Did your doctors suggest any treatments that you rejected and if so, why did you choose to try other methods?
Oh, yes! My NHS doctor suggested a diagnosis of Chronic Fatigue Syndrome for which the NHS-mandated treatment is Cognitive Behavioral Therapy. I had had ten years of CBT when I was misdiagnosed as “depressed” back in ’99 and I told him it had not helped my thyroid at all. I was advised to get more exercise, despite that I had collapsed from lack of energy during a five minute “warm-up” at the hospital gymnasium. I was advised to increase my Levothyroxine to 75 mcg, despite the lack of testing to determine whether I was properly converting T4 to T3.
Considering my history, none of these recommended treatments seemed at all advisable, and I determined to go to private care to get the thyroid and cortisol tests I believed were requisite to diagnose me. I got recommendations for a private integrative physician in north London. He spent over an hour with me at the first consultation (in contrast to the eight minutes I might get from an NHS doctor) and told me he wanted to test my FT3, FT4, RT3, iodine and saliva cortisol. I burst into tears of happiness!
Those tests showed my FT3 was low and RT3 high. I wanted to fast-track feeling better so I jumped on a plane to NYC and saw a Manhattan thyroid specialist who took one look at my labs and started me on WP Thyroid and Cytomel, within three days I actually felt human again! I spent three weeks running around NYC like a tourist! My FT3 was a bit high though and my FT4 had dropped below the range. My London doctor suggested I add thyroid glandular (without the hormones) to raise my T4 and I took that advice. In all, it took five months to adjust my new meds so that I felt great and my labs looked good.
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?
So much brings me true joy! My incredibly supportive husband whom I adore; the warm sun on my face on a cold winter’s day; a visit to one of the excellent London museums or galleries; digging in the garden, feeling the earth in my hands; visiting friends and relatives; having a nice cup of tea; buying sustainably produced whole foods and preparing beautiful, healthy meals in my kitchen. There isn’t much in Life that I don’t find joyful.
I am so blessed that less than a year and a half after I first began my research into why I was feeling so poorly, I am now feeling so exceedingly well; I’m deeply grateful that the very worst of it was less than a year long. It gives me joy to share my journey with others who may find something helpful from it.
WOW! What an incredible encouraging testimony.!
hi nona….so pleased you’ve healed so well…..could you tell me the name of the integrative dr you saw in north London please?
Nina can I ask which integrative doctor you saw in London please? Thank you
Nona…I pad typo!
your story gave me hope ,thank you for sharing your journey ,please can you tell me the name and the website of
the integrative doctor,Iam very sick .
thanks in advance
Thank you so much for sharing your story Nona. It is one so many of us can relate to.
It makes me deeply sad that so many (mostly women) are having to live with such intolerable symproms for so much of their lives – often the section of life that requires the most from us – the working and child-rearing years.
I am sad that I was so ill during that time, but I count myself very lucky that I have been able to turn my health around in time for my later years. So many don’t get this opportunity because of the blindness and misogyny of modern medicine.
You sound like you’re thoroughly enjoying life now – you deserve it!
Would you share the name of the doctor you used in Manhattan? Thank you.
What an amazing story! I wonder how large the percentage is of people who being told, ”you’re getting a bit older and you just have to live with your problems”
Would it be possible to know the name of the doctor that Nona saw in north London? Many thanks!
My daughter in law is struggling with Blepharatis and several other issues. I noticed that Nona had that but didn’t see her speak of it again after her first answer. I know it’s been three years now but I would love to hear if that condition was resolved and what she attributes it to.
Thank you for your time-
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