Hi, I’m Rachel. Multi-Award Winning Thyroid Patient Advocate, Writer, Blogger, Speaker and Author.
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From Thyroid Patient To Thyroid Patient Advocate
As many other thyroid patients will relate, having hypothyroidism and Hashimoto’s left me sick and tired of being sick and tired, and as a result, I soon became well read in literature regarding thyroid disease and the intricacies involved when treating and managing an individual with it. So, with a thirst to absorb as much as I could about this little butterfly shaped gland in my neck, I built relationships with key figures in the thyroid community, to grow my thyroid patient advocacy into what it is today.
As a thyroid patient who has had to learn all the ins and outs of thyroid disease in order to get herself better, I have been able to locate the information those with hypothyroidism need in order to regain good health once again and collate it in my work.
In my own experience, living well and thriving with hypothyroidism and Hashimoto’s has been like piecing together a big jigsaw puzzle. There have been many pieces for myself and each thyroid patient can have a unique combination of pieces. So my work, website, articles etc. all bring together the various ‘jigsaw puzzle pieces‘ for other thyroid patients to use in their own journey.
How Did I Become a Leading Thyroid Patient Advocate?
From feeling like I was dying to finally thriving again
I first had symptoms of Hypothyroidism/Hashimoto’s at just sixteen years old.
People labelled me as ‘lazy’ for my lack of energy and stamina and I always felt cold. Symptoms only increased in numbers after experiencing swine flu, also at sixteen.
Even after I had recovered from this, I continued to go through bouts of feeling very tired all the time, having achy legs and poor stamina. I also started to become ill a lot more often.
At eighteen, I contracted another strain of flu which developed in to pneumonia, and resulted in 80% of my hair falling out. Unfortunately, the pneumonia was so severe in my case that I was admitted to intensive care and put on life support. Following this, I was also left anaemic.
I also started having recurring, strong bouts of depression and anxiety from around eighteen-years-old. I was on-off anaemic for a few years and never felt fully well again; feeling tired and achy and having other random symptoms, such as leg cramps, migraines and irregular periods mount up, but with no explanation from doctors.
Because I was ‘only borderline’, I was left without treatment for a while longer, which led to me becoming even more unwell, before I was eventually started on thyroid medication in the Summer of 2015, at twenty-one years old. It frustrated me that doctors had missed my thyroid condition for so many years and that they never once suggested or tested me for a thyroid condition until then. Especially as I was constantly complaining of many symptoms of a thyroid condition and had recurring poor mental health episodes, which often come hand in hand with it.
When I was finally prescribed medication, I was put on Levothyroxine, which I was truly hopeful about working.
However, Levothyroxine sadly didn’t work for me. Days, weeks and months passed by where I was only feeling worse the longer I was on it. All my symptoms were worsening, I collected more new ones as the days went on and my mental health was devastating. Anxiety and depression took control of my life. However, doctors told me that I was adequately treated for my hypothyroidism.
Five months into Levothyroxine, I suggested to my doctor that my thyroid levels couldn’t be right if I still felt so unwell. The doctor’s reaction was to trial me on a slight increase in my Levothyroxine dose. He said that this medication was the only thing I needed, however, I only felt worse on the higher dose.
I was told that the medication was fixing everything, so any lingering symptoms were “all in my head” and I was even told that I needed “to let it go”. Doctors didn’t believe that I was still feeling unwell.
I started looking for other patients to discuss how they were doing on Levothyroxine, as well as reading studies and research online and purchasing a lot of books about thyroid disease. I started my blog, The Invisible Hypothyroidism, to begin recording my experiences as a thyroid patient.
Through doing all of this, I read about another medicine, called NDT (Natural Desiccated Thyroid), and decided that I would like to try it. After all, what did I have to lose when I was so unwell already? I was so desperate to feel even a tiny bit better.
NDT is available on prescription here in the UK on a named-patient basis, so I asked, but various GPs and an endocrinologist refused. Eventually, I decided to source the medication from abroad myself, with my GP knowing, and he helped to dose and use this medication so that I could recover a good quality of life.
I started NDT and within a week or so, started feeling much better. My symptoms disappeared one by one. Thankfully, my mental health also improved.
As well as optimising my thyroid medication, I also addressed low Vitamin D, low ferritin (iron) levels, sex hormone imbalances (oestrogen dominance), gut health issues, started supplementing a few other vitamins and have gone gluten-free, among the many other things documented on this website and in my book.
As well as taking thyroid medication to replace the hormones I’m missing due to having hypothyroidism, I also started looking at ways to control my Hashimoto’s and began piecing together my own thyroid health jigsaw puzzle. Working with a functional medicine practitioner in particular, I was finally able to slot the final pieces in to place and reclaim my quality of life.
A few years on now, I finally have a private prescription for my NDT medication, as I am fortunate enough to see a private GP. I was pleased to stop having to self-source this crucial medication but frustrated with having to pay so much for it. After all, this isn’t an option to everyone in the UK, but it is what I need to live.
So today, I’m finally thriving instead of just surviving with thyroid disease and I share all of this with the thyroid community I have fostered.
My Hashimoto’s is in remission and I’ve since covered in detail everything I’ve done to get my life back on track in my book Be Your Own Thyroid Advocate: When You’re Sick and Tired of Being Sick and Tired.
I also welcomed my first child in 2020 after a very straightforward and complication-free pregnancy.
My plan is to help others by sharing what I learn as I go along on this eventful thyroid journey myself, whilst empowering others to be their own thyroid advocate too, because that has been such a huge part of my own journey.
It is also important to find the right medical professional for you, who will help to be a valuable partner in your own healthcare and guide you to better health. I hope in sharing my own experiences and the information that I gather, that it will help other thyroid patients to improve their lives and reclaim their health, too.
Who is Rachel?
I am a multi-award winning thyroid patient advocate, writer and author, receiving seven 2021 WEGO Health Award Nominations and Winner of The 2020 WEGO Health Award for “Best in Show: Facebook”.
I am also a founding board member for the American College of Thyroidology. ACT is a 501(c)(3) nonprofit corporation whose focus is the training of physicians and health care practitioners on the best practices of thyroid care.
I was honoured to be offered a position on the WEGO Health Patient Leader Advisory Board for the year 2021, which I accepted.
The Invisible Hypothyroidism has also been cited by The National Academy of Hypothyroidism as one of the best thyroid advocacies doing their part to raise thyroid awareness.
I am an author, with my first book Be Your Own Thyroid Advocate: When You’re Sick and Tired of Being Sick and Tired an Amazon Top 10 Bestseller and #1 New Release, released in 2018. A revised, updated second edition was released in 2019.
And my second book, You, Me and Hypothyroidism: When Someone You Love Has Hypothyroidism, was released in 2019 and also became an Amazon Top 10 Bestseller and #1 New Release.
Although British and currently living in England, UK, I advocate for thyroid patients worldwide and work on a global scale.
What I Do
As well as authoring books, I blog about my personal experiences on this website and my social media platforms– the ups and downs of living with thyroid disease, it’s linked conditions and my mental health experiences.
I produce informative articles based on studies and research, to educate and empower fellow thyroid patients. I have also written for many other websites.
I am very active in raising thyroid awareness across social media, with thousands of thyroid patients following me on Facebook, Instagram, Twitter and Pinterest. I am therefore also an online content creator to a large audience.
I created and maintain the The Thyroid Family Facebook support group, which has almost 100,000 members, produce a free fortnightly email newsletter, as well as a premium monthly email newsletter, which further guides and supports thyroid patients on their own thyroid journey.
I have appeared on the radio, podcasts and television, discussing thyroid disease and raising awareness; sparking conversations around thyroid disease diagnosis and treatment options. This has included the BBC.
I am constantly working with others who advocate in the thyroid disease industry, to change and improve the lives of thyroid patients across the world. Examples of this include the many podcasts I have been featured on, multiple interviews with the BBC, Thyroid Central, Invisibly Me, Health Stories Project and more.
Please see my full list of projects, accomplishments, collaborations and more here.