In this episode of The Dr. Hedberg Show, I interviewed writer and thyroid advocate Rachel Hill of The Invisible Hypothyroidism. We discussed Hashimoto's disease, hypothyroidism, and many connections to these illnesses.
Rachel suffers from thyroid issues herself so we can learn a lot from her about her personal experiences. I urge everyone to listen or read and connect with her through her website and social media which I have linked to at the end of the transcript.
Here is a transcript of the recording with Rachel Hill for those who prefer to read rather than listen:
Dr. Hedberg: Okay. Well, welcome, everyone. This is Dr. Hedberg and today, I'm gonna be talking to Rachel Hill. And Rachel Hill is the founder of Invisible Thyroid and just some background on Rachel. She was diagnosed with hypothyroidism, Hashimoto's disease, as well as chronic fatigue syndrome, as well as having adrenal fatigue, and experience with depression and anxiety disorder. Rachel created The Invisible Hyperthyroidism. This is an award-winning patient advocacy blog that focuses on helping others by advocating for better thyroid disease diagnosis and treatment. So, I'm excited to have you on. Welcome to the show, Rachel.
Rachel: Thank you for having me. I'm excited to talk to you today.
Dr. Hedberg: Excellent. Why don't we start with you talking about The Invisible Hypothyroidism, exactly what that is and why you started it?
Rachel: Yes. So, The Invisible Hypothyroidism is the name of my thyroid patient advocacy blogging website that you've just touched on. Under that name, I also get involved in other things such as doing interviews, podcasts like this, fundraising for thyroid charities, and I run a couple of forums in Facebook groups as well to reach for the thyroid patients and other halves, to provide some support and advice, really. The Invisible Hypothyroidism encapsulates what it means to advocate for yourself and your own health, which I think is incredibly important and something that I've learned along my thyroid journey.
Before my blog went live, back when I used to write about my experience as a coping mechanism, like a diary or journal if you will, for myself to read back on. I wrote a poem called, The Invisible, which I really wrote to try and encapture all the sides of living with thyroid disease, which is an invisible illness, and all the signs a lot of people don't understand or see. So, when I decided to start writing on a private blog space, I used the title of this poem, The Invisible, but felt that The Invisible Hypothyroidism described what I was writing about and wanting to convey much better.
And I just wanted to just, kind of, get out all of the sides of hyperthyroidism that people often don't see, and all the various sides that I was struggling with. And then eventually, I turned my little private corner on the web where I was blogging my personal experiences to a public setting, and my blog went public and I haven't looked back since. It's been really popular, and a lot of people seem to resonate with my experiences across the globe actually. And despite being based in the UK, about 60% of my traffic is from the U.S., which is quite interesting.
Dr. Hedberg: Excellent. So, of course, you've gone through this yourself. You've been diagnosed with hypothyroidism, Hashimoto's, chronic fatigue. So, that was obviously a motivation, but can you give us some more insights into what motivated you to become an advocate for thyroid patients, and also create The Invisible Hypothyroidism?
Rachel: Yeah. So, essentially, I'd had signs and symptoms of hypothyroidism and Hashimoto's for years. And I was frustrated that it took so long for doctors to find it and then get to the point where I was eventually diagnosed and then began treatment. I was just flabbergasted, if you will, that it had been missed for so long, and even worse, that there are still people out there who don't know that they have it, or like me, get diagnosed eventually, but still remain on poor treatment. And in some cases, don't get any treatment at all for it, especially those given the sub-clinical or borderline hypothyroid diagnosis like myself. It's really unhelpful.
As soon as I reached out and got in touch with our patients from across the globe online, I soon became quite shocked and astounded that so many people in the same position as me were still suffering, and most importantly, suffering needlessly as well. I mean, people living with hypothyroidism can live a full, good quality life. They don't have to crawl through each day like a zombie. And so after learning all of this myself, I decided that change needed to happen, and especially, for thyroid patients in the UK as well who are often quite under-voiced due to the lack of British Thyroid Advocates.
So, I began writing and quite scarily, actually, sharing my stories and personal experiences of what I had encountered so far online, and I soon realized that a lot of people were resonating with this. And so I expanded on what I was doing and just kept on going. I think behind everything that I do, I just want to let other thyroid patients know that they're not mad, they're not imagining things, and most importantly, that they're not alone. Which so many people do sadly feel so alone and isolated in what they go through with thyroid disorders.
Dr. Hedberg: Right. Yeah, your story is similar to a lot of people's that I see in practice. Usually, there's been a misdiagnosis, or patients are told it's all in their head. And then of course, if you have Hashimoto's there's really no conventional medical treatment for that, other than thyroid medication. So, there's a lot of people out there, especially women, who are suffering with this. So, you've got a lot of great information on your site, The Invisible Hypothyroidism, with some good advice. Do you have any... Is there a single, top piece of advice that you wanna give people out there with thyroid problems?
Rachel: The number one thing I always say to anyone living with hypothyroidism is to embrace being your own thyroid advocate. And that is the sort of, big tagline or slogan, if you will, across the top of my website. By this, I mean, learning what is part and parcel of having thyroid disease, and then what isn't, learning to stand up for yourself and your health so that you can make progress in how you feel. Unless this includes learning what lab tests you should be having done, what results you're aiming for, and this obviously, is taking into account optimal levels as opposed to just falling within a wide, outdated range often.
And includes researching, and reading, and embracing, being more involved in your own health care and treatment. The people who feel better and the ones who make progress are often the people working with their doctor. With a good doctor, often, within functional medicine even, and the people who embrace being their own advocate, they're the ones who tend to get better.
Dr. Hedberg: Right. Right. So, everybody's different when it comes to hypothyroidism and Hashimoto's, and what I do is I will look... Usually, we began with birth and childhood because we're learning a lot more about the connection with early, adverse, life events and the autoimmunity as an adult. So, for example, women have autoimmunity at a much greater rate than men, and if we look at traumas as a child or teenager, we're seeing significant connections there with adult autoimmunity, cardiovascular disease, inflammation, things like that. And a lot of these patients are very different in their first signs and symptoms when they develop this condition. So, can you give us some background on what your first signs and symptoms were?
Rachel: Yes. So, I think for me, throughout my childhood, there were early signs, sort of, dotted all the way through. For example, I never used the toilet regularly, perhaps once every one to two weeks, which is quite shocking really, and we know that constipation is a big symptom of an under-active thyroid. But from as young as I can remember, I can remember that that was just normal for me, but it was never really picked up on. I was often referred to as being lazy, especially as a teenager, and I think a lot of people passed that off as just being a teenager, sleeping in on the weekends or just being generally lazy or having a lack of energy, overall, or thinking that you can't be bothered or you are not motivated.
And I've also lived with anxiety my whole life, although I didn't realize at 19 that that's what it was, and I just put it down to being a worrier or overthinking things. But it really was anxiety and anxiety can be debilitating on its own. Again, that can be another symptom of thyroid issues and Hashimoto's, especially. But at age 16, this is where I look back and notice the real triggering of Hashimoto's beginning for me. Following catching swine flu, which you may remember was a huge outbreak out in the UK specifically in 2009, I never really recovered after it had gone.
I had achy legs and strong bouts of fatigue that would come and go. And this is really just the start of my health declining. It's quite sad really, that it started so young as well, at just 16 years old. And then over the next 5 years, I developed over 20 other signs and symptoms of hyperthyroidism that I would keep jotting down on a note on my phone because the doctors just weren't really believing me. They thought I was making all of these things up that included things such as cough cramping at night, depressive bouts, acid reflux, cystic acne, despite being 23 years old when I developed it. Irregular and heavy periods, dry skin, eczema, dermatitis, brain fog, gluten sensitivity, brittle nails, hair loss and the list just goes on. So, by this time I was diagnosed with hyperthyroidism and Hashimoto's at 21, I was a complete wreck and I was a shell of who I used to be.
