Hi, I’m Rachel. Award-Winning Thyroid Patient Advocate, Writer, Blogger, Speaker and Author.
“If you are looking for friendly, down-to-earth, commentary and information on thyroid conditions, The Invisible Hypothyroidism is the place to go.” – The National Academy of Hypothyroidism
Who is Rachel?
I am am award-winning thyroid patient advocate, writer and author, receiving six 2018 WEGO Health Award Nominations and being awarded 3rd Place and 9th Place in the Top Hypothyroidism Websites List and Top Thyroid Websites List, respectively.
The Invisible Hypothyroidism has been cited by The National Academy of Hypothyroidism as one of the best thyroid advocacies doing their part to raise thyroid awareness.
I do have useful qualifications and certificates in Diet and Nutrition, Reflexology, Life Coaching and Motivational Speaking, however, I am not a doctor or medical professional, but instead a thyroid patient who shares her own experiences.
I am also 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. I am currently writing my next book, You, Me and Hypothyroidism: When Someone You Love Has Hypothyroidism.
What I Do
I am a regular contributor for The Mighty and ThyroidChange, also producing articles for other organisations and sites on-demand as well. My work has been republished among many websites, including Yahoo and MSN and I have over sixty articles now published on The Mighty, as a trusted and well-recognised contributor. Read more on my involvement with other organisations here.
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. I also worked with the PiliPala Thyroid Diary App and I have taken part in various research projects. I was included in a documentary in 2019, regarding thyroid testing and management and the issues patients face. I also run an online thyroid patient community, now containing almost 50,000 members.
I have sponsored an event with Mind, the leading UK Mental Health Charity, in regards to the link between thyroid disease and mental health issues and my work was cited in Health Rising’s report on the use of T3 medication in CFS.
The Invisible Hypothyroidism has been cited as:
“A blog with the most amount of information I’ve seen in one place about hypothyroidism! …From a UK source, this site has been the best,” by Never Mind The Thyroid.
Please see my full list of projects, accomplishments, collaborations and more here.
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, and 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 field.
As a thyroid patient who has had to learn all the ins and outs of the condition 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.
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 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?
Read about my personal experiences in detail in my book.
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 ‘lazy’ for 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, which 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 for three weeks. Following this, I was also left anaemic.
I also started having recurring, strong bouts of depression and anxiety from this 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 with no thyroid medication for a while longer, which led to me becoming more unwell, and then I was eventually started on thyroid medication in the Summer of 2015, at twenty-one years old. It frustrated me that doctors had missed it for so many years and they never once suggested or tested me for it until now. Especially as I was constantly complaining of many symptoms of it and had recurring poor mental health episodes, which often come hand in hand with it.
All the signs were there but it was missed.
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 feeling worse and worse the longer I was on it. For a brief two weeks I felt better, amazing actually, and then I plummeted back down to feeling worse than I’d ever been before. 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. My work life, social life and ability to do simple tasks were affected, as I had over twenty symptoms affecting every aspect of my life. However, doctors told me that I was adequately treated.
Five months into Levothyroxine, I suggested to my doctor that my thyroid levels couldn’t be right, if I felt this way and that this was causing my symptoms to worsen and my mental health to get increasingly worse. 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 a lot on the higher dose.
I was told that the Levothyroxine was fixing everything, that my TSH was now normal, so any lingering symptoms were “all in my head” and I was even told that I needed “to let it go”.
I had never been so upset and astounded. I was not an attention seeker nor making any of what I was experiencing up. I knew my own body and I knew something wasn’t right. I knew the medication they gave me was not working.
I started looking for other patients to discuss how they were doing on Levothyroxine, as well as reading online and purchasing a lot of books about having hypothyroidism. I started my blog, The Invisible Hypothyroidism.
Through doing al of this, I read about another medicine, called NDT (Natural Desiccated Thyroid), and decided that I wanted to try it. After all, what did I have to lose by this point? It sounded better for me than Levothyroxine and I was so desperate to feel even a tiny bit better.
NDT has been successfully used for over a hundred and fifteen years in hypothyroid patients and it is available on prescription here in the UK on a named-patient basis, so I asked, but two GPs refused. Eventually, I decided to source it myself. I would, however, urge you to work with a doctor in getting it provided for you as self-sourcing is risky and can be dangerous. Other thyroid medications such as NDT and T3 can be prescribed on the NHS, but no one would do this for me and I wasn’t prepared to wait around any longer while my quality of life continued to worsen.
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.
I went back to a third GP to tell him, and he was happy for me. I explained all symptoms had gone except for the fatigue, which was a lot better but not completely gone. He supported my decision to use NDT and sent me to a specialist, an endocrinologist, to discuss this further and possibly get it prescribed.
The endocrinologist unfortunately wasn’t at all helpful in my case. He dismissed a lot of what I said. I suggested the lingering fatigue I experienced could be my adrenal glands dysfunctioning, possibly producing too much cortisol, and so blocking the NDT from fully working. He laughed and said ‘just by looking at you, I can tell you don’t have adrenal problems’, and instead diagnosed me with Chronic Fatigue Syndrome. He also refused to prescribe NDT because, in his words, his panel would not approve it so it would be a waste of time. Which left me in the position of unfortunately having to keep self-sourcing this vital medication instead.
So, I came home and ordered some adrenal testing myself to explore this piece of the puzzle.
After completing the adrenal test I, I sent it back for analysis and a couple of weeks later I received the results. They were indeed dysfunctioning – my cortisol output was elevated. Again, the doctors were unfortunately so very wrong. I started working on this immediately, learning about how to fix it. Through addressing this with the help of a functional medicine practitioner and through my own research, I can only be incredibly happy that I have my life back.
I also addressed my low Vitamin D level, low ferritin (iron), sex hormone imbalance (oestrogen dominance), leaky gut and gut health, started supplementing a few other vitamins and have gone gluten-free, among the many other things documented on this blog 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.
A few years on now, I still self-source my thyroid medication, although work with my GP who is happy for me to be on it and monitors me, adjusting my thyroid medication dosage when needed. However I unfortunately have had to pay for a lot of tests myself in order to make progress, but they have been very valuable.
I work with my GP where possible, as this is the ideal way to manage my health, but I have had to learn to advocate for my own health also.
My GP is supportive and open to what I suggest after researching. I work with him, sharing what I learn as I go and the endocrinologist, on my second visit, was astounded by the progress I had made in just five months. He admitted that he was wrong about NDT medication. I hope to have my NDT prescribed one day, although, like many thyroid patients on the NHS, cannot afford a private prescription at this moment in time, and having it prescribed on the NHS is hugely unlikely. I am still aiming to be able to have it prescribed one day though.
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.
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 too.
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