Hi, I’m Rachel.
Multi-Award Winning Thyroid Patient Advocate, Writer, Bestselling Author, Speaker and Content Creator.
Lived Experience Representative.
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 even 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 recognised as a leading thyroid advocate.
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.
My work as a thyroid patient expert and advocate brings together this information 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
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 very 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 breathing support. Following this, I was also left anaemic and required physiotherapy to gradually 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 finally tested me for hypothyroidism and I was told I was ‘borderline‘ hypothyroid with Hashimoto’s.
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. When I was finally prescribed Levothyroxine, I was truly hopeful about it helping.
However, Levothyroxine sadly didn’t work for me. 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 and I became suicidal. 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 started looking for other patients to discuss how they were doing on Levothyroxine, as well as reading studies and research online and purchasing books about thyroid disease. I started my facebook support group (which amassed 127,000 members before I ‘archived’ it in 2024), and shortly after that, this website, The Invisible Hypothyroidism, to begin recording my experiences as a thyroid patient. The response from fellow thyroid patients in the same situation was overwhelming.
I learned about TSH test not always being accurate and how important it was to check Free T3 and Free T4 levels too. I also learned about other types of thyroid medication, such as liothyronine and NDT (Natural Desiccated Thyroid), and decided that I would like to explore them.
They are available on prescription here in the UK on a named-patient basis, so I asked, but various NHS GPs and an endocrinologist refused. (Read about the history of why this is often hard to obtain, here.) So, eventually, I decided to source the medication from abroad myself (with my NHS GP knowing) and he worked with me to dose and manage this medication so that I could recover a good quality of life.
Within a few months or so of changing to NDT medication, I started feeling much better. 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, poor gut health, started supplementing a few other vitamins and have gone gluten-free, among the many other things documented on this website, my social media and in my book, to recover my health. Most of which with the guidance of a functional medicine practitioner and private GP.
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 work.
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 NDT continues to work for me, my 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 and second children in 2020 and 2022.
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.
