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The Invisible Hypothyroidism

In this episode, Korus CEO Bryan Menell interviews autoimmune thyroid disease blogger, writer and author Rachel Hill, about her own journey with Hashimoto’s and Hypothyroidism, and her new book “Be Your Own Thyroid Advocate.” Rachel is 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 thyroid patients and giving them a voice, and is well-recognised as a trusted and useful contributor to the thyroid community.

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Podcast Transcript

Hello Rachel, and welcome to the podcast.

Hi. Thank you for having me.

I’ve got lots of questions for today, but the first one is tell us about The Invisible Hypothyroidism; your blog, your facebook group, your new book. Why did you create all of this?

Um, so the invisible hypothyroidism is the name of my thyroid patient advocacy blog, as you just touched on. And under that name I also get involved in other things such as interviews and podcasts like this. I’ve written a book, so I became an author last year and I run a couple of facebook support groups as well to further help our patients and provide support and information. So the invisible hypothyroidism really 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 the way on my own 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. I wrote a poem called “The Invisible,” which I really wrote to try and capture all the sides of living with our disease, which is an invisible illness and all the signs that a lot of people don’t understand or see. So I decided to start writing on a private blog space and 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. So that’s, that’s where the name came from really. And I guess I just wanted to talk about all the sides of hypothyroidism that people often don’t see and all the various parts of it that I was struggling with as well. I’m like a record of my own personal journey. And so now, three years on share my own experiences and journey has been really popular with the thyroid patients and a lot of people seem to resonate with my experiences as well. Right, right across the globe really. So despite being based here in the UK, as you can probably tell from my accent, and most of my followers are actually based in the US, which is quite interesting.

Our listeners might have a variety of different autoimmune conditions and might not be specifically familiar with thyroid issues. So can you give us a bit of a backgrounder and tell us a bit about what it is?

Yep. So the thyroid condition that I have is called Hashimoto’s thyroiditis, so that’s an autoimmune disease that involves the thyroid gland located in the front of your neck and when your thyroid gland produces hormones. So sorry, your thyroid gland produces hormones that are required for every cell and every function in the body. Um, and so when the output of this is affected, which is what happens with Hashimoto’s, the symptoms and effects can be far reaching. And then this often develops into hypothyroidism. With Hashimoto’s the immune system is essentially attacking the thyroid gland and over time it becomes more damaged or destroyed, and this is then how it often leads to hypothyroidism as, as output of those hormones is effected and causes a whole host of symptoms. Hashimoto’s is the leading cause of hypothyroidism behind around 90 percent of cases and symptoms include things like chronic fatigue, muscle aches and pains, joint pain, Migraines, uh, dry skin, period issues, acne, hair loss, digestion issues, fertility issues, all sorts of things really, as I said, it’s very far reaching. It can affect everything from the top of your head right down to your toes. And it’s much more common in women compared to men with around eight or nine times more. Women diagnosed the men and it often comes to light following a hormonal shifts such as puberty, pregnancy or the menopause. Um, a lot of women are either diagnosed Jordan or after pregnancy as, like I say, that that big hormonal shift can cause stress on the body and trigger this hormonal condition.

Tell us a little bit about your own autoimmune journey, but what age did things begin to start? And when you noticed symptoms and how did it progress and eventually how’d you make it through to the other side to where you are today?

Uh, yeah, sure. So, um, essentially I’d had signs and symptoms of Hashimoto’s for years beginning with a bout of flu at 16 years old. And then symptoms just kind of mounted up over five years by, by the end of that five years I had over 20 symptoms and that’s when I was eventually diagnosed. Um, and I guess I was just left feeling really frustrated that it took so long for doctors to pick up on it and diagnosed me and then eventually started me on treatment for it. Unfortunately the standard treatment didn’t really work for me and that was the T4 only medication called Levothyroxine or Synthroid, which most of patients are put on. Conventional medicine for hypothyroidism and Hashimoto’s does work for some and I would hazard a guess for most people but not all of us. Um, and I was unfortunately one of those people that it just didn’t work for. In fact, I only got more unwell as time went on this standard medication, so after getting to a point of feeling suicidal and heavily depressed. I eventually decided to change medication and I started on natural desiccated thyroid, which can be prescribed by doctors, but often it isn’t for a whole list of complicated reasons and a long history, but within I was feeling much more like my old self again. That one has been the biggest and I guess intervention you could say I’m in me sort of coming out the other side of of quite a dark place of having autoimmune disease, but as well as changing thyroid medication I’ve found lots of other interventions which have helped me come out the other side such as going gluten free. I’m addressing my leaky gut yeast overgrowth and raising low vitamin levels, optimizing thyroid hormone levels and addressing my diet just so that I’m focusing much more on protein and less sugar, carbs and processed food. And so it’s really been quite a holistic approach at looking at everything and and treating my whole body and all those. All those systems. More so with a holistic approach instead of just focusing on the thyroid,

Is there anything else you do in your personal regimen? Maybe it’s sleep or exercise or meditation that really keeps you away from flareups?

Now that you’re saying that I had a flareup yesterday actually, um, and I, I’m, I’m getting better at spotting what tends to trigger them or make them more likely and I think the one, the one yesterday, with this busy period over Christmas and New Year, I just over committed myself to customers as well as eating quite poorly for the last couple of weeks is as you do with all the holiday food. So, um, in terms of what regimen or other things that keep me in good health day to day, I’m sticking to being gluten free, which I have been now for a couple years and promoting good gut health with probiotics and digestive enzymes and really importantly eating healthily. And I’d say those are really the key things. And if I start to slip up on any of those, I soon feel it. I’m sticking to a sleep schedule. I’m taking certain supplements and vitamins that will play a part in helping me feel well and helping me feel at my optimal health, I guess, and if I get lazy with any of these things that I can start to feel it in the form of a flare up in my Hashimoto’s or my symptoms. Um, and I, yeah, I have got a lot better over the years at learning how to manage and how to manage my condition and my energy levels. And if you haven’t checked out the spoon theory metaphor, which if you put into Google, it should come up straight away and then that is a really great tool to use if you’re just starting to understand how your, how your autoimmune disease can affect your energy levels and that sort of thing as well. It’s like I say, it’s been quite a holistic thing and, and looking at other things I could adjust my working hours, being able to change to a part time job, which I’m really thankful for. I found that working fulltime work just kept taking me in, stepped back in my health as well and also adjusting the type of work that I do has also really helped. So I think it’s important to get that balance between work, personal life, social life, and then looking after your wellbeing and your stress levels as well.

Leaving behind breadcrumbs and talking about your experience and sharing with people is obviously something very important to you. Tell us a bit about the new book that just came out and your facebook group and all your other efforts to help this community.

I have my blog which is where I share everything, you know, my experiences, my thyroid journey, but also the wealth of information that I gather and learn as well along the way. And as well as that I also have my book and which as you said which came out in November of 2018 and it’s called “Be Your Own Thyroid Advocate: When You’re Sick and Tired of Being Sick and Tired” and it’s really just about my own personal journey of Hashimoto’s and hypothyroidism and what I did to get myself well again after being is such a dark and unwell place. It just contains all the information that’s helped me, um, that will help others make progress in their own health as well. It’s also quite a motivational, uplifting tool as well. So, um, if you’re in quite a dark place or if you’re struggling with your mental health as well, and then I hope that it not only provides the information that you need to get better, but also equips you in your mind with the tools to kind of go out there and go forward with it as well. As you also said, I have a facebook group which currently has just over 40,000 people worldwide. It’s called “The Thyroid Family” and it’s really just a safe place for people to come and talk about their experiences and talk about what has helped them, what perhaps hasn’t helped them and share uplifting stories and really just support one another back to good health and a place of thriving with Hashimoto’s. I also have my biweekly newsletter, which is sent out every two weeks and that delivers personally curated information with the aim of encouraging more thyroid patients to be their own thyroid advovate and make improvements in their own health. So, um, so yeah, I’m, I’m very busy. I do do all of this full time. So, um, I, I, it really is my passion. I just really love to advocate for patients in any way that I can, um, and with any, any projects such as this podcast that can sort of help me get the word out there and I’m just reach more people and let them know that you can live well with Hashimoto’s and hypothyroidism.

Where can people find and purchase your new book?

My book is available on Amazon, um, and uh, that is 9.99 here in the UK. Um, and I believe it’s 12.99 in the US and then it is available throughout the world, but obviously I’m, those prices will differ depending on the exchange rates and that sort of thing. You can get signed copies from my facebook store as well, which uses PayPal and they’re slightly more, but I do sign those and put a message in them and if you don’t have an Amazon account then um, then yeah, you can use that way as well to get a.

One theme that I hear from you and read in your writings is about being your own advocate. Tell us more about that from your perspective.

Being your own thyroid advocate or even health advocate and basically means to embrace understanding your health condition, what it means, what it entails, understanding the test results, medication options, and really just all those other pieces of the puzzle that often needs slotting into place. I like to describe addressing hypothyroidism and Hashimoto’s in particular as putting together a big thorough jigsaw puzzle. So that can often be many pieces or just a few depending on the person. Um, and they kind of represent interventions that we need to slot into place or different approaches that work for different people. So being your own advocate really means that you need to embrace finding out exactly what those, those jigsaw pieces are and then work to slot them into place in order to make progress in your own house. And so yeah, I mean unfortunately many thyroid patients are still unwell under mainstream treatment and management, so learning to advocate for your own health is crucial and this kind of situation where doctors otherwise just don’t have the time to explore as much as you could get your health back on track or as a lot of us find in the autoimmune and community, um, mainstream conventional medicine especially can be behind more and integrative and forward thinking, medicine, medical practices. So to be your own thyroid advocate or, or health advocate is the key message behind everything that I do because in my personal situation that has been sort of my mantra I guess. Um, in terms of the key thing that’s helped drive me forward and help me get better.

One unique thing that you’re interested in that I don’t hear about very often is the family members of people with autoimmune and how they’re affected. What have you learned about that?

I do feel that as well as there being a general lack of information and awareness around autoimmune thyroid disease, there’s also this lack of support and information directed at those who have a friend or family member with it. So whilst it’s true that auto immune disease patients go through a big diagnosis, um, and shift in dealing with this change in their life and, and that’s perhaps even some adjustment phase and grieving when they get the diagnosis that were close friends or family members do go through that to a certain extent as well. I mean my husband had to learn what my diagnosis meant as well and how it affected me and what that meant in terms of how a household or relationship would work or how the fatigue and brain fog affects me as a person and my ability to carry out the tasks that I used to do in our relationship with no issues. So yeah, this is something that I write about a lot. It’s something that I really think we need to speak about more often. Um, I dedicated a whole chapter to it in my book to those friends and family and sort of the, the close loved ones around us and include information on how they can support us, phrases or things that they perhaps shouldn’t say or even should say, um, to kind of help us on our journey back to a good quality of life and having it under control as well. Because if we can have that essential support, then yeah, it can be really crucial in how quickly and how well we also recover with autoimmune thyroid disease. I guess what’s worth mentioning as well as the, as well as providing them with this information in a book so they can support us and get us better or even on my website. I also started a facebook group to support them as someone also having to adapt to the new diagnosis of thyroid disease. And it can be really difficult for them to. Our spouses, friends, children, siblings, you know, they worry about what they should be doing to help us or what our future together now looks like. How to cope with the mood swings, the tensions or the symptoms and it’s an area that isn’t really touched on by anyone else. And so for this reason I’ve begun putting together another book which I’m going to sort of dedicate and right for entirely for the loved ones and friends and family for a patient specifically and although that is very much still in the early stages of development, but um, yeah, so it’s, it’s something that I think we do need to talk about more and being more aware of. Um, and I just hope that as well as in the thyroid community and within all those other, um, specific autoimmune disease communities and that there will be more, more support in place for our loved ones so that they can also, it can also help us on that journey and whilst getting the support that they need.

Well thank you so much for coming on the podcast. Congratulations on the new book and I really appreciate you sharing your story with our audience as well.

Thank you very much for having me.