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About Me

Hi, I’m Rachel.

Multi-Award Winning Thyroid Patient Advocate, Writer, Author, Speaker and Content Creator.

Lived Experience Representative.

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.

I had spent years undiagnosed and increasingly unwell, only to still continue to worsen in health after an eventual diagnosis.

As a result, I started sharing my personal experiences online as a way to connect with others, and soon became well versed in thyroid disease and the intricacies involved when treating and managing it.

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 to 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 collate the information others with hypothyroidism need in order to regain good health once again too.

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 my own health, and each thyroid patient will have a unique combination of pieces.

So my work as a thyroid patient expert and advocate brings together these ‘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 and Hashimoto’s whilst only a child, but they really ramped up when I was sixteen-years-old.

People labelled me as ‘lazy’ for my lack of energy and stamina, I missed school due to heavy periods and migraines and I always felt cold. Symptoms increased in numbers and intensity after experiencing swine flu, also at age sixteen.

Even after I had recovered from this illness, 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-years-old, 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 an intensive care unit and subsequently put on life support. Following this, I was also left anaemic and required physiotherapy to walk again and regain fitness.

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.

At twenty-one years old, the doctors eventually tested me for hypothyroidism and I was told I was ‘borderline‘ hypothyroid with Hashimoto’s.

A selfie of Rachel looking very ill before NDT

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, Levothyroxine, I was truly hopeful about it helping.

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. I wasn’t able to work or physically move from bed most days. However, doctors told me that I was adequately treated for the 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 this website as a blog, The Invisible Hypothyroidism, to begin recording my experiences as a thyroid patient and the response from fellow thyroid patients in the same situation was overwhelming.

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. (read about the history of why this is often hard to obtain, here.)

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. NDT saved my life and I couldn’t believe so many others didn’t know about it either.

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. Most of which with the guidance of a functional medicine practitioner and private GP.

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 the Hashimoto’s and so 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. I continue to share all of this with my audience.

After around 3.5 years on self-sourced NDT, I finally managed to obtain a private prescription for NDT medication in 2019, as I am fortunate enough to now 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. It’s so unfortunate so many others cannot access this medicine. This is part of my advocacy works.

Today

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.

The Hashimoto’s is in remission and I’ve covered in detail everything I’ve done to get my life back on track in my bestselling 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 second child arrived in 2022. I was on NDT for both pregnancies and documented these journeys in detail too.

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.

You can find contact details for me here.

Who is Rachel? 

I am a multi-award winning thyroid patient advocate, writer, speaker and author; Winner of The 2020 WEGO Health Award for “Best in Show: Facebook” and The 2022 Social Health Award for “Social Media Media Master”, both recognising my efforts in advocating for thyroid patients across social media platforms, which are such a huge way to connect those in need to support.

Rachel in The Sun

I was honoured to be offered a position on the WEGO Health Patient Leader Advisory Board for the year 2021, which I accepted, as well as the 2023 Health Union Patient Leadership Council (PLC).

I was also a founding board member for the nonprofit American College of Thyroidology from 2020 to 2023.

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 bestselling books:

Helping thyroid patients around the globe.

Although British and currently living in England, UK, I advocate for thyroid patients worldwide and work on a global scale.

Please see my full list of projects, accomplishments, collaborations and more here.