A Chat with Author and Thyroid Advocate, Rachel Hill
If you don’t already know, Rachel Hill is the creator and founder of The Invisible Hypothyroidism, a blog and website dedicated to patient-to-patient advice and experiences living with Hypothyroidism. Rachel’s blogs and facebook group, The Thyroid Family, were my first resources in the thyroid-health world. Without them, I don’t know where I would be today. Rachel persuaded me through her writing to be my own thyroid advocate and take control of my health. Rachel continues to upload daily content to her blog and has written an amazing book, Be your own Thyroid Advocate: When You’re Sick and Tired of Being Sick and Tired.
Today on the blog I want to introduce you to Rachel! The purpose of my blog is to spread awareness and provide information that I think is necessary and effective to take with you on you're own healing journey, which is why I feel it is fitting to have this chat with Rachel today!
Rachel, tell us a little about yourself and what you do!
I’m Rachel Hill, the thyroid patient advocate, blogger and author behind The Invisible Hypothyroidism. I’ve been diagnosed with hypothyroidism and Hashimoto’s for just over three and a half years and I’ve been documenting my journey and advocating for other thyroid patients for almost as long.
I’m from the UK, but work to help thyroid patients around the globe who need a voice because they’re still not very well and I write about my own personal experiences of having hypothyroidism and Hashimoto’s, as well as sharing any information I find to be helpful along the way, writing reviews on thyroid books, doing podcasts and interviews and just about anything that helps raise awareness of thyroid disease or help other thyroid patients feel not so alone.
Tell us a little about your diagnosis and journey with thyroid disease.
I had symptoms of a thyroid disorder from the age of sixteen, following a bout of flu, but was eventually diagnosed at twenty-one years old after complaining of mounting symptoms for five years.
I knew that there was something not quite right in my body for ages, as symptoms such as: leg cramps, acid reflux, constipation, fatigue, acne, period issues and more were all mounting up.
However, when I was eventually diagnosed with autoimmune hypothyroidism, it was still a huge shock. To be told that I had a lifelong condition that would require medication for life was really upsetting as a young adult.
I didn’t know where to turn or what to do, which is why I started my blog. Hopefully it provides some light and guidance to anyone else who is new and overwhelmed by the diagnosis, too! You’re not alone!
You recently announced on your blog that your Hashimoto's has gone into remission. What does this mean for you and what do you think contributed to this recovery?
Yes, getting my thyroid antibodies down from the thousands to hardly anything has made quite a bit of difference in how I feel both physically and mentally, and without even realizing it too. Receiving the news that my Hashimoto's was in remission was a real shock, but it did underscore how well I had been feeling of late. For some people, they like their antibodies at zero to be in remission but mine are within normal ranges, which is basically what someone without Hashi's has. That's what I refer to as mine being in remission.
They dropped over the course of three years, with changing thyroid medication from Levothyroxine to NDT and going gluten-free helping me the most, i'd say. I did also start supplementing Vitamin D and Selenium which are cited to lower thyroid antibodies and worked on my gut health a lot. I also went dairy-free for a few months but saw no difference at all.
So you've said that a change in thyroid medication made a major difference in your health. How do you feel about self-sourcing your thyroid medication? Have you felt significant changes by switching these medications?
To start, let me say that it is far from ideal. Ideally, a doctor would be prescribing me this medication for unfortunately in the UK the only real chance you have getting it prescribed is by going private, where appointments and prescriptions can easily cost hundreds of pounds every month. The NHS prescribe T4 medication most of the time with T3 becoming harder and harder to get. Many people are even being taken off it because of the cost.
Self-sourcing wasn't an easy option and I thought about doing so over months. It was my husband that eventually bit the bullet and just went for it, turning to me one night and telling me it would be here within a few weeks.
I did inform my GP straight away and he is supportive of me using it, monitoring me with regular blood tests and what-not. I still feel that self-sourcing any medications risky and far from ideal but I can't deny that in my situation, it saved my life. I was suicidal on Levothyroxine and just did not want to live anymore. I have my life back now.
I'm still hoping to get my meds prescribed one day and am exploring private doctors, but they're not cheap for the average person. Like me.
How did The Invisible Hypothyroidism start? Was health always your passion?
Was health always my passion? Not at all!
As with many people, my passion for advocating towards a better quality of life for those with hypothyroidism was born out of my own experiences. Like many others, it took me quite a while to get that diagnosis of a thyroid condition and by this time, standard medication didn’t work me, so it took even longer to get properly medicated and feel well again. Years in fact.
I soon realised that there was a lack of thyroid patients being open about their journey, what they tried that did or didn’t help them get better, and personal approaches to writing.
There are many great charities, advocacies and medical professionals who speak about thyroid disease, but we’re lacking actual thyroid patients sharing their experiences too, and speaking for the millions around the world.
REAL stories that provide hope, comfort and acknowledge that we really aren’t alone if what we need more of.
Talk to me about your facebook group, The Thyroid Family?
I started the Thyroid Family Facebook support group before my blog. Basically, I had joined multiple thyroid groups online yet didn’t find one that had the environment and outlook I needed; a warm, welcoming atmosphere where people feel as though they are surrounded by others who REALLY get it. A ‘family’.
We’ve passed 40,000 members now, with thyroid patients from all over the world sharing their insights, stories, trials and support for one another.
Let’s talk about your book. How long was it in the works?
I started writing Be Your Own Thyroid Advocate: When You’re Sick and Tired of Being Sick and Tired in November 2017, following my fiance (now my husband) giving me the final nudge I needed. It had been requested by followers of my blog and members of the Thyroid Family group for quite some time, but it was all quite a daunting prospect!
It took me a year to do from start to finish, publishing it in November 2018, though the writing process was very on and off. I got married in the middle of 2018 and travelled quite a bit that year too, so I went months at a time without working on the book.
The idea was to produce a book that I felt was missing when I was first diagnosed and looking for materials to help me understand my new life with hypothyroidism and Hashimoto’s.
I had read countless books by doctors and medical professionals for example, but they could be quite science heavy and with thyroid fatigue and brain fog, they weren’t always easy to read or absorb.
My book is from a thyroid patient, speaking to a thyroid patient. I cover my own experience with becoming unwell, getting diagnosed, medication not really helping and then what things I did to make the journey back to good health again.
I always say that Hashimoto’s and hypothyroidism are like a big jigsaw puzzle, and treating and managing them requires finding out what those jigsaw pieces are and slotting them into place. They could be dietary changes, supplements, a change in meds, change in exercise routine, stress reduction, infections, the list goes on. But I cover a lot of them in my book.
I also wrote Be Your Own Thyroid Advocate: When You’re Sick and Tired of Being Sick and Tired with the intention of it being a motivational and uplifting tool, too. There are chapters that aim to fill you with hope as you go forward in your thyroid journey. This was another aspect I found lacked in all the other thyroid books I had read.
My book also includes a whole chapter that speaks to our friends and family, regarding how they can best support us and what they should know about thyroid disease. This is perhaps the chapter I receive the most gratitude for.
I have to know, will you ever write another book?
I hope so! I’ve already started on book number two, which will be aimed at our friends and family. Essentially building on the chapter for them included in my first book.
This is going to be a harder book to write though, as it is primarily for our loved ones, not thyroid patients necessarily, so I’ll be writing it with my husband who has that experience and insight.
Your book is called “Be Your Own Thyroid Advocate”. What does that mean to you? What inspired you to become your own health advocate and why is that an important lesson for your readers?
Being your own thyroid advocate really means embracing understanding your thyroid condition, what it means, what it entails, how it’s going to change the way you do things in future, understanding test results, medication options, and really just finding those other pieces of the puzzle that often need slotting into place.
I soon realised, after doing my own research, that the thyroid patients who get better are often the ones who pay particular attention to their health and put in time to actively improve it. That includes some trial and error with these puzzle pieces I mentioned.
Learning to advocate for your own health is crucial, especially in the current situation where doctors just don’t really have the time to explore as much as you could, to get your health back on track.
A lot of us in the autoimmune community also find that mainstream or conventional medicine can be behind more integrative and forward thinking medicine too, so to be your own thyroid advocate is the key message behind everything that I do because in my personal situation, that has been the key thing that’s helped drive my health forward and help me get better. Conventional medicine can help, but it is also often limited in treating the thyroid patient holistically. I have read your book, I am actually currently reading it again, because it is just that good and filled with incredible information. Where can everyone else buy your book?
Be Your Own Thyroid Advocate: When You’re Sick and Tired of Being Sick and Tired can be found worldwide on Amazon, with signed copies available from my Facebook shop.
See it on Amazon.co.uk here: https://amzn.to/2S2BhKO
Amazon.com here: https://amzn.to/2WelStP
And Amazon.ca here: https://amzn.to/2S3JUbz
Where can we find your information, join The Thyroid Family and follow the Invisible Hypothyroidism?
I’ve compiled almost 400 blogs and articles on my website TheInvisibleHypothyroidism.com to date, which covers everything from my personal journey and experiences to book reviews, guest blogs, informative articles and more. I am also very active across multiple social media platforms, including Instagram, Facebook and Twitter
The Thyroid Family is here: https://www.facebook.com/groups/449586315231741/
Rachel Hill, a highly ranked thyroid patient advocate, writer and author, created the award-winning advocacy and website The Invisible Hypothyroidism. Diagnosed with Hypothyroidism and Hashimoto’s, she talks about what it’s like to have these conditions, is passionate about helping those with hypothyroidism and giving them a voice, and is well recognised as a trusted and useful contributor to the thyroid community. Rachel's work can also be found on her twitter, facebook, instagram and website, as well as in her book; Be Your Own Thyroid Advocate.