Rachel Hill is an author, writer, thyroid patient advocate, and creator of the award-winning website, The Invisible Hypothyroidism. Diagnosed with hypothyroidism and Hashimoto’s disease, she talks openly and honestly about what it’s like to have these diagnoses, as well as what has helped her and many others to recover their health and to thrive. She is passionate about helping those with hypothyroidism and giving them a voice, and is recognized as a valuable contributor to the thyroid community.
Listen in as Rachel shares…
- how she was first diagnosed with hypothyroidism as a teenager
- that before her diagnosis with Hashimoto’s (at 21), she had two severe flus, as well as symptoms that included uncontrolled loss of weight, migraines, irregular periods, acne, acid reflux, bloating, contact dermatitis, eczema, and the loss of about 80% of her hair
- how common thyroid disease is – and how few of us are talking about it
- that her symptoms left her bed-bound and immobile many days, and forced her to reduce her work commitments
- that she was originally prescribed T4 (Synthroid/levothyroxine) only, and this didn’t’ help – but she started researching alternate options and found a thyroid community
- that based on her research, she decided she wanted to try NDT (natural desiccated thyroid), which she had to self-source because no doctors in the NHS would prescribe it
- that not only has she struggled to get doctors to believe her, but many of the fellow thyroid patients she hears from have been in the same boat (including Lauren)
- the emotional toll of not being believed as a patient
- the importance of becoming an active participant in your own healthcare – in other words, becoming your own advocate
- how risky self-sourcing medications can be
- how important it is to always keep your doctors in the loop with regard to medications and treatments
- the best tests for thyroid function, and what they teach us: TSH, free T3, free T4, thyroid peroxidase antibodies (TPO), thyroglobulin antibodies (TgAb), and reverse T3 (which can often be the most difficult to obtain)
- why TSH isn’t enough of a test on its own in order to fully understand our thyroid function
- that Hashimoto’s and hypothyroidism are not mutually exclusive diagnoses
- that her husband, Adam, has acted as an advocate for her in medical settings
- that, disappointing as it may sound, female patients often find they are taken more seriously by doctors when they bring a male advocate with them to their appointments
- that her husband’s advocacy has brought them closer together – so much so that they have now written a book together!
- that her husband truly understood what she was experiencing when she explained Spoon Theory to him
- that fatigue and brain fog always troubled her when she was sick, and made her worry that she might have early-onset dementia
- that she now avoids gluten; when she does accidentally consume it, she can be knocked down for a few days
- the importance of making your workplace as comfortable and accommodating as possible for your needs when you have chronic illness
- the importance of conserving energy, even in small ways, when you live with chronic illness
- how her book, Be Your Own Thyroid Advocate, was designed to help thyroid patients – and was born from her blog, The Invisible Hypothyroidism
- info about her newest book with hubby Adam: You, Me, & Hypothyroidism, which charts both patient and loved-one POVs on navigating chronic illness
- how she started her award-winning blog
- that while the NHS is wonderful, it has let Rachel down as a thyroid patient – she wasn’t tested for hypothyroidism until she’d had symptoms for 4+ years
- how common thyroid disease is – 1 in 20 in the UK live with it, but as much as 60% of cases are undiagnosed
- the fact that although so many people likely have thyroid disease, it’s not commonly screened in the UK
- that UK doctors are forced to jump through additional hoops to screen and medicate thyroid disorders
- the importance of power in numbers to create change
This episode is also sponsored by Embr Labs, creators of the Embr Wave.
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Lauren: Well, guys, thank you for joining us. I'm joined here today by Rachel Hill, who is a thyroid patient advocate. She is the author of the blog, The Invisible Hypothyroidism. She lives with Hashimoto’s disease … like me, woo-hoo! And hypothyroidism. She's also got an amazing book out; if you've got thyroid conditions, this is essential reading. It's called Be Your Own Thyroid Advocate: When You're Sick and Tired of Being Sick and Tired. We'll post the link for it with the episode. Rachel, thank you so much for joining us!
Rachel: Thank you so for having me on. I’m really excited to talk about all things thyroid!
Lauren: I'm so happy to have someone on who is going to talk about those things, too. Because it's been a while in the making, to get someone on the show who is an advocate who is as aware of the stuff that I'm living with, as I am. So I'm just very glad to have met someone else in the chronic illness fam who knows what's up!
Rachel: There's so many people out there with thyroid conditions, but we don't really talk about it. You suddenly realize there are all these people out there when you start talking about it, that you didn’t realize beforehand. So it’s good to raise awareness.
Lauren: So true. And that was something that really happened when I got sick, and it was sort of the birth of this podcast. So it's kind of perfect that we've connected. So Rachel, why don't we start off … if you could tell us how you first found out you were sick; what symptoms you were experiencing? And what steps you took to take control of your health?
Rachel: Symptoms of Hashimoto’s and hypothyroidism began for me when I was 16 years old. I caught swine flu … you might remember it was on the news … everyone was going a bit crazy about it.
Lauren: I had that, too!
Rachel: Yeah, loads of us seem to have caught these crazy viruses and strains of flu. And I had that for a couple of weeks, I think. I was 16. Even after it passed, I still had these aches and pains in my legs; I was quite tired. I went back to the doctor’s a few times. I was told it was just a lingering effect of having this flu. It persisted over years and years. By the time I was then 18, I caught another strain of flu. After being at home with it for about five or six days, I was severely dehydrated and hallucinating and ended up in hospital. And I raised the thing again then, that my immune system was always … from that point of getting the first flu at 16 … quite faulty. I was still having these aches and pains, and acne and irregular periods, migraines — and they still just didn't really have any questions for me. While I was in hospital with that second lot of crazy flu, they couldn't really get that under control and what was going on with that either. So I eventually ended up in intensive care with pneumonia. When I eventually come out the hospital, my bad health has just been sped up; I’d been fast tracked onto the path of Hashimoto’s, essentially. I lost about 80% of my hair. As well as the acne, I had contact dermatitis and eczema and other skin complaints for the first time ever. I lost a lot of weight, and then my weight would fluctuate, going up and down quite a bit, changing dress sizes here and there. I just had all these mounting complaints over the years — as well as the migraines, period issues, acid reflux, and random bloating. Just everything, from the tip of my head to the tips of my toes — symptoms of every part of my body. I eventually got diagnosed at 21, almost 22. And so it was about five years or so of repeatedly going back and complaining of all these, what I thought were separate symptoms and issues, but which actually formed this big thyroid picture that we eventually found out.
Those five years felt really long for me. I'm aware that other people put up with this for 10, 15, 20 years before they eventually get a diagnosis. That is part of why I like to raise awareness and talk about it. And talk about the symptoms. Because, like we touched on at the beginning, it's so common — but people don't talk about it.
Lauren: That’s so true. So what steps did you take to control your health once you had a diagnosis? Obviously, you're on a different health system with the NHS in the UK. So I'm interested to hear whether that journey affected your access to various medications, and what that whole journey was like for you?
Rachel: I was originally started on levothyroxine, which is a T4-only drug. I was started on that for about six months. My symptoms just got worse and worse as time went on. I kept going back to the doctors. They were telling me my levels were fine, they were normal. At this point, they were only really checking TSH, and sometimes free T4, which, as we’ll probably talk about later, can be part of the issue with getting a thyroid condition optimized. After six months of essentially … like I touched on previously … my health just kind of fast tracked; it was getting worse and worse and worse, but really quickly. Six months for me felt like a lifetime. During that time, my working pattern had gone down to one day a week at work. The other days, I was bed-bound. My now-husband, at the time my boyfriend, had to help me up and down the stairs at home, to go to the toilet, to get dressed and showered.
I was practically disabled as a 21-year-old. It was really, really scary.
Despite doctors telling me that I was fine on the levo and that I was normal and being optimally treated. I just kind of knew inside that wasn't the case. And that there was definitely something wrong. I was sure it was a thyroid problem. I started talking to other thyroid patients in the community — through Facebook, Instagram, Twitter, online forums, thyroid charities, various places. I just started learning about other medication options that I had no idea existed. And I think a lot of us have no idea, and we often don't get given the option of what treatment we’d like to go on to after a diagnosis. And this is especially true here in the UK. There's T4-only meds, like levothyroxine and Synthroid, the gold standard. Fortunately, they do work for a lot of people, but there are a good chunk of us that they don't work for. And so after researching into these other options — like synthetic T3, and NDT, which is natural desiccated thyroid medication — I decided that NDT just made the most sense to me, and that I wanted to try that. I went back to my GP still on the NHS a few more times, and I tried a few different GPs as well at the surgery, about getting it and they said no. So unfortunately, I started self-sourcing, which is what I still do. At this moment in time, I am looking into private doctors, in particular functional doctors and that sort of thing, to see if I can obtain a private prescription. As a thyroid advocate … this is my job, this is what I do day in/day out, and I feel very fortunate to be able to do this … but I am still like many other thyroid patients in that the cost to obtain a private prescription is probably still out of my reach. This is just one of the ongoing battles that many of us thyroid patients are struggling with at the moment, and especially here in the UK — because other than T4, other medication just isn't routinely prescribed, and it's getting harder and harder.
Lauren: I'll say in comparison here in the US, we had very similar experiences, in that people didn't believe us for a while in the beginning. And in terms of access to combo therapy, which is what I ended up on — the T3/T4 combo — that was something that I couldn't get through most traditional Western doctors or endocrinologists, and I had to end up going to an integrative health specialist in order to even have that suggested to me. Which at the time, when I was like a baby Hashimoto’s patient, I had no idea until someone said, “Let's get you on combo therapy.” And it made a huge difference. It's amazing to me the lack of compassion on the side of the medical world unless you get into the functional and integrative world. That we do have people who look at us and say, “We don't believe you.” Or, “You don't need to be on that; you're fine.” Just because your numbers are fine, doesn't mean that your body’s absorbing what you need to absorb. It's frustrating on both sides of the ocean from what it sounds like.
Rachel: Yeah, definitely.
I’ve heard from a lot of thyroid patients who just find it difficult to get medical professionals to believe them. They hear these phrases like: “It's all in your head.” Or, “You just need to let go. You just need to get over it. You’re a hypochondriac, you’re imagining it." Loads of us have heard those kind of phrases. And it's not just unhelpful, it's detrimental as well. Because it often worsens the mental state that a lot of us are already in when we're struggling. It just completely disempowers people when we should be empowering each other.
Lauren: Yeah. And I think the other thing is that we're sort of taken for granted in the medical system. These thyroid disorders can actually physically take a huge toll on you — which then, of course, takes a mental toll as well. That you were having to get your now-husband to help you up and down the stairs. You were working one day a week; I had to stop working. Because, for me, it was mainly fatigue. I was also getting muscle cramping. If left untreated, we become disabled. And if we're treated, we can function. And sometimes even just getting to the right treatment, as you've said, with sourcing your NDT, can be such a long road. In terms of self-sourcing, one of the things you do mention in your blog that we should bring up is that self-sourcing … not always the safest option. If you can get your NDT through a doctor or combo therapy through a doctor, that's always the way to go. Because when you're self-sourcing, you can't control the the quality of the product as easily. But this is what you've had to do in order to survive.
Rachel: Yeah, it doesn't come without its risks. And its dangers. And for me especially, it was really important to go to my NHS GP and essentially say to them, “If you're not going to support me in this, this is the route I'm going to take.” To make them aware. When I took this medication into their office, this GP … who I still see now and I hope he never leaves the practice, because it's been a hard time trying to find someone so understanding … he now knows what to look for when we run my blood tests, how to manage me on this medication. Because we've had a few years of knowing where we like my results to sit, and that sort of thing. So yeah, it's important to advocate for yourself and become an active participant in your own health care. If you are going to go down that route of self-sourcing, and we have to really stress it is risky and can be dangerous and is no means ideal, at least make your your primary health care provider aware of what you're doing and work with them. And even in letting them know what your intentions might be, that might even give them a further nudge to look at it one last time and so possibly prescribe it for you. When they see how serious you are about it as well. Always keep your doctors in the loop of what's going on.
Lauren: Yeah, absolutely. And one of the things that also just came up is that you were talking about the different tests that your doctor runs … I was wondering if you could also quickly walk us through what the essential tests are, if you're having some kind of thyroid disorder? What are the tests that you need to get done in order to find out where your levels need to be, and how to function properly?
Rachel: Standard TSH tends to be run on its own. I think that happens most often here in the UK, and certainly really often over in the US, as well as other parts of the world. And unfortunately, that is just one part of the full thyroid panel.
The other tests as well as TSH are free T3, free T4, thyroid peroxidase antibodies and thyroglobulin antibodies, and then you also have reverse T3, which is really good to test for as well. That one is still quite hard to obtain a lot of the time through your physician or doctor.
The free T3 and free T4, they measure your actual thyroid hormone levels, so that's super important to have done and to monitor. With TSH, which stands for thyroid stimulating hormone and that is produced by the pituitary gland — which actually sits in your head, in your brain, and that talks to your thyroid gland to tell it how much hormone to produce … or to even take its foot off the gas and produce a little less if you have an overactive thyroid gland. And whilst TSH can give an idea of what's going on with your thyroid levels, but you're not really going to know for sure unless you actually test the thyroid hormone levels. So that is free T3 and free T4. And then besides reverse T3, the other two are TPOAB and TGAB. They are your thyroid antibody levels, and they test for Hashimoto’s — a lot of us with hypothyroidism also have Hashimoto’s. A lot with Hashimoto’s also have hypothyroidism, but you can have it without the other symptoms as well. So it's good to test as many of those as possible every time you test. And that just helps when you're tracking symptoms and how you feel — looking at your test results and logging them against that, and to be able to look back over past results to compare where your health has been and perhaps where you want to get back to again.
Lauren: Yeah, and I think a lot of people will find if they do get their antibodies tested … I think you had a similar experience to me as well. When we had them finally tested, our numbers were off the charts — like in the thousands — which doesn't exist on the chart, and you eventually find that you need to be within a certain range, which is much lower than that. And for different people, it takes different things to bring these antibodies down. For me, it was LDN — low dose naltrexone. But of course, there are other alternatives to bring those numbers down as well. But when it comes to Hashimoto’s, in particular, getting those antibodies down is what's going to get your thyroid functioning properly and bring you into remission.
Lauren: One of the things you also mentioned was about your now-husband helping you out with physical tasks that you couldn't complete when you were really sick. Aside from, of course, becoming your own advocate, I was wondering whether at any point in the journey to diagnosis and treatment, you had to rely on anyone else to be your advocate, and how that affected your relationship with them?
Rachel: That was definitely Adam, right through. I would say that once I was diagnosed — because before diagnosis, neither of us really knew what was going on, and although I was going back and forth to the doctors a lot — we weren't really involved in this kind of thyroid whirlwind, as we are now. But once I got that diagnosis and we found we had a reason for it … I was on the levothyroxine and that wasn't really helping … at that point, I had to start leaning on Adam to come with me to doctors’ appointments to provide that support in the office.
I think a lot of people can feel a bit intimidated by medical professionals and doctors, especially if you hear those phrases of, “You’re a hypochondriac … It’s all in your head.” If you’ve heard those kind of really harmful messages, it can help to have someone there in the room with you for support.
And so Adam would come with me to a lot of medical appointments, whether that was with the GP or endocrinologist, or the functional medicine practitioner which I started seeing later on. And that was really helpful. I almost felt more empowered to say everything that I wanted to, because I had that support behind me. I had someone cheering me on, a cheerleader in the office with me! But he was also able to bring things up that I'd forgotten. If I had a long list of symptoms of things that I wanted to talk about, but I was feeling brain fog and fatigue from the thyroid condition, it was really good to have Adam there to say, “Oh, what about this thing? We wanted to talk about this?” And then also to provide that alternative viewpoint as well.
Although it shouldn't be this way, a lot of the time if you as a woman take a male friend or family member, somebody important to you, into medical appointments, they will often take you more seriously. And it shouldn't take having to take some else with you, especially a male, to get that validation. But unfortunately, that's just the way it is a lot of the time.
It was amazing how much more positively I felt about how the appointment went and how much we seemed to progress after the appointments when I took Adam with me. Because it wasn't just me turning around and saying, “I feel really fatigued every day. I can't get up and down the stairs. I'm falling behind on housework.” There was also Adam to say, “Yeah, when I get home from work, she's asleep on the sofa at 6pm.” He had to do more housework and all that, and he had to start doing the grocery shopping on his own because I was just crashed-out asleep. He was able to provide that validation, but also an alternative perspective.
Lauren: Yeah, I mean, it's so frustrating, as you say, to have to bring a male in to be taken seriously as a woman. I personally have brought my mother with me to appointments. But now I’m wondering, gee, I wonder if it would have been different if I'd brought my dad? And if we would have figured it out 10 times faster?! In terms of bringing Adam to your appointments, how has that affected your relationship? Has it strengthened your relationship? Or has it made you question your self-validation as a woman in the world … how has that looked for you?
Rachel: As with all of this, it has just strengthened us. At the moment, we're writing a book together, which will be out in a few months’ time. And that is essentially about using your thyroid condition to actually strengthen your relationship — whether it’s with a romantic partner, or spouse, or your mum, your dad, a sibling, a friend.
I think it's really important, because it can be an experience that can be quite negative, and definitely life-changing … to turn it into something more positive.
I feel really lucky that I've got someone in the form of Adam, who is so understanding. And he's really keen to see how he can get involved, and how he can best support me as well. There was definitely some teething issues, and it took us a while to get to that point, for him to fully understand what my health conditions were as well. I don't know if you're aware of the Spoon Theory, which a lot of people use in the chronic illness community. But I remember when I shared the Spoon Theory analogy with him, there was this light bulb that went on, and he just suddenly realized how my energy levels worked, and how these symptoms can impact from day to day. And so there's tools like that, that we can use to make people around us more aware of how they can help us. Strengthen those relationships, and use an experience like this to deepen the connections we have with people. We've learned so much as a couple. And we've experienced so much, especially as a young couple in our early 20s, that we wouldn't usually experience. A lot of the time, we felt like an elderly couple with the stuff we were experiencing. It's made us mature, definitely; we’re definitely more mature than other people our age. It is what it is, and it has helped to make us who we are today. You’ve just kind of got to grasp these situations and just look at how you can move forward with them, really.
Lauren: Yeah, and it's just so wonderful to hear that it has strengthened your relationship. I knew you were writing a second book. And it's great to hear that you're writing it with Adam, because I didn't know that. So that's really exciting. We're going to talk about your book in a little bit, but it is the guide that I was saying I wish I had when I had first gotten sick — because it really gives you a perspective on these chronic illnesses, removing a lot of the heavy science stuff. Even though the science is in there, and understanding medications and how your thyroid works, but just really understanding what steps you need to take — that was the real thing. I can get a book that helps me understand how this is all working. But I need someone to tell me what the playbook is now for getting better. And that's exactly what your book is aimed at doing. So, in terms of when you were sick, versus now that you're on the NDT … what was a typical day like for you back then, versus now?
Rachel: Oh, wow… it's always strange to look back and think about how ill I was. When I was really ill, so either just before I was diagnosed, or even when I was diagnosed and on levothyroxine … I woke up in the morning for work at half-six, 7am, something like that. And I felt more tired than when I went to bed the day before — which always really confused me, and that was one of the concerning things as time went on. I felt like I was dragging myself through every day; I just had this fatigue weighing my body down. And I didn't really have a good reason.
I was going to bed quite early and getting loads of sleep; I could sleep for 14 hours and still feel really, really tired. Things would go by in a haze. I could read an email 10 times, and the brain fog and fatigue wasn't letting it sink in.
I still couldn't figure out what I was supposed to do with it. I would answer the phone and I'd be, like, “Oh, good morning …” and I'd forgotten my greeting of what we're supposed to say in the office whenever someone would call. I was getting work muddled up. I just had this moment of thinking, oh my god, I'm really ill because if I'm doing things like this, what else could I be doing that could be dangerous, putting other people at risk? Or getting things wrong at work and getting into trouble? And that just really shocked me and opened my eyes. I remember as well, on a separate day … it was a weekend, a Saturday morning or something like that … I’d got out of bed probably around 9am. I felt really tired and achy, but I thought, no, I'm going to push on through … I'm going to get up and do something productive today. I think I'd like to put some laundry in the washing machine. I'd had some food. I'd watched some things on Netflix. And I got to this point halfway through the day, at about 12 o'clock. And this wave of blackness just hit me, and I thought, oh my god, it's 12 o'clock. What have I done today? I don't remember getting out of bed. It was just bizarre.
I was worried I had early onset dementia. That was the reality of day-to-day life. I was fatigued. I had brain fog. My weight was going up and down. My skin was going crazy. My face was hollowed out with really big bags under my eyes. I just looked ill.
I think a lot of thyroid patients … although we say it's an invisible illness, they do have this kind of look about them. They just look ill, having to struggle through day to day. And that is what we're having to do essentially. Before getting my health on track, it was really rough day to day. Every day felt like a year.
Lauren: Yeah. You feel like a ghost in the shell of who you used to be.
Rachel: It felt like a half-life.
Lauren: Yes, absolutely. It does feel that way. But then, when you do get better, and you start to get your health back — and that's where I am now, still, continuing to be in remission — you start to be like, oh, I can get through a whole day. Or, oh, I can remember this thing. And it's like a gift when you can function regularly. And you realize that you took a lot of that stuff for granted, don’t you?
Rachel: Oh, yeah, definitely.
I think good health is taken for granted until it's taken away from us. I think that's just the reality of most people that get diagnosed with a chronic health condition.
Lauren: Yeah, absolutely. Now, how do you balance the demands of work and life? Before, I know, it was a lot harder because you were dealing with fatigue and brain fog and muscle cramping and pain. And when we say brain fog, guys, I just want to be really clear. People in the chronic illness community understand that brain fog is different from forgetfulness. It's different from fatigue. It’s its own thing. It is that total feeling that you're losing control, and that you could be having early onset dementia, or Alzheimer’s, or something. So, how do you balance those demands? How did you do it then … I suppose then it was harder to do it … and now that you're working in this advocacy space, but also being aware of your own health, and your needs?
Rachel: Yeah, I think for all of us it’s a balance. And I think that balance varies from person to person. So we've got to find out what works for us. When my health was really bad, and like I said, I was in work one day a week, maybe three days a week on a good week. Luckily, my employer was really understanding. I worked for a small charity, so it was quite a nice workforce and office to be in. And when I wasn't in, other people would pull together to cover my workload. I felt really thankful for that. If I was anywhere else, honestly I probably would have lost my job, or would have had to have been signed off sick for quite a while. That was something that my GP wanted me to do at one point, to be signed off from work for anything from two weeks to a few months. But I was quite stubborn in that; I guess I didn't want my thyroid condition to take anything else away from me, because it had already affected my home life and my social life and other things so much. That was really hard. These days, I work for myself entirely. My thyroid advocacy work is what I do full-time, and I feel really grateful to be able to do that. That's what I'm passionate about. But it also gives me that flexibility. I generally do about 20 hours a week. I give myself set days and hours to do that, just like any other job. But if I'm having a flare-up day, or if my health has taken a bit of a nose-dive … or for example, I'm gluten-free to manage my Hashimoto’s, so if I get glutened in a restaurant or something like that, as anyone else who avoids gluten will know, that can really knock you out for a few days. So, it's good to have this flexibility and I've been lucky to be able to have that with what I do now. Back when I was still employed with someone else, my health was in a good place as well. I went from a full-time job down to part-time because, again, that's what I figured out that my body tends to like doing; that’s a good balance for me, physically and mentally as well. But I also stuck to more office jobs, and I would adapt my surroundings in the way that I would stay clear of drafty or cold areas, or I’d keep a hot water bottle and a blanket under my desk just in case I needed it. I made a point to stay hydrated all day; I’ve been caffeine-free for some years now. And to have high-protein snacks in my desk at all times. Just little things like that can help you to get through work that little bit easier.
I think the main thing for most people, if they're struggling with maintaining work and they have a thyroid condition or any chronic illness, really would be to consider the type of work that you're doing. But also the hours and days, and where those hours fall, as well.
I know for a lot of people, shift work can be quite taxing on the body. I used to work in a care home as a care assistant nurse, and I did 12-hour shifts, and that just drove my health backwards. So for me, switching to more of an office environment and figuring out what hours my body was happy to do, and at what pace … that was really important as well. I appreciate not everyone is as lucky to be able to work for themselves, being able to plan their own times and their own days. But if you can find ways to optimize your workspace and your work situation for you, that can go a long way in helping manage your thyroid condition overall. We spend so much time at work, and it's an important part to consider.
Lauren: Absolutely. That's really good advice. I know we touched on this earlier when you were telling us about the the early stages of your journey to diagnosis. But do you have any anecdotes that you can share with us about being confronted and forced to justify what was going on with you — whether to a medical provider or to a co-worker, or anyone else in your life?
Rachel: I think I've been quite lucky, and I haven't faced that situation an awful lot. I think a while ago again, when my health was still fairly bad or definitely a bit more up and down than it is these days, I struggled a lot when I used to work for someone else — using public transport every morning, and after work as well. I would struggle with obtaining a seat, especially a priority seat.
Lauren: And we should be clear, when you say that you struggled for a seat … it's not because you can't stand, it's actually because you're so tired. Sometimes you just need to rest your bones, and the fatigue and everything sort of adds up. And if you're having muscle cramping, that doesn't help. But it's usually the fatigue that for patients like us, we end up needing the seat.
Rachel: Yeah, and I think for me, whether or not I got to sit down on that 25-minute tram journey to work and 25 minutes back each day … when I got to sit down, that made the difference to how much other energy I had to spend at work that day, or whether I'd have energy to do the cleaning or cook dinner in the evening.
Going back to the idea of the Spoon Theory and being able to conserve as much energy, or be wise with how you spend your energy can be quite important when you're still getting your health more under control.
There was this one morning when I really struggled to get to the tram stop; I shouldn't have really left the house, but I was determined to get to work. I was feeling really hot and sweaty, and faint and dizzy, and my legs felt like they were going to give away. But I was adamant to get to work. I did the 15-minute walk to the tram stop, and I prayed that there would be a seat when I got on the tram. Luckily I started work a little bit later that day. So the tram was empty when I got on and I sat straight into a priority seat, which for anyone who doesn’t know … in the UK anyway, priority seats are essentially reserved for people who are less able to stand. So that could be someone who’s pregnant, elderly, have a health condition, if they’re using crutches — it can be any of those things really. So I grabbed a priority seat, more so because it was just right near the door. I just kind of collapsed into it because I was feeling so unwell. And at the next stop, a couple got on who were probably about 65 or 70.
And even though I sitting in one priority seat of a row of three or four, the woman came up to me and said, “You're not a priority.” And she basically told me to get out of the seat, even though there were two next to me that they could sit in. She was clearly just making a point to defend the need why she was more entitled to a seat than me. And I just kind of froze.
And I felt really panicked. And I guess attacked, looking back. I just got really sort of emotional inside. I wanted to say something to her, and I couldn’t — just because I was shocked more than anything. And like I said, there was plenty of seats on the tram, more priority seats next to me; there was no reason for her to say it other than to make a point. Five or 10 more minutes passed. She had chosen to sit on seats opposite me, and she basically pointed to me and said, “You're not a priority, you shouldn't be in that seat.” Again, she had to make that point, just to let me know that I shouldn’t have been in that seat. Luckily, I was getting off the tram at the next stop anyway to go to work. But it did upset me for the rest of the day, and inspired a couple of blog posts that I wrote about basically not trying to judge whether someone is entitled to something like that. Because there are various reasons why someone could need that seat or could benefit from using it. And you can't always tell just by looking at someone.
I might look like a fit and healthy, regular 25-year-old, but what's going on inside my body is quite different, and that can differ day to day.
When you first asked me the question, I hadn’t thought of that but it’s actually probably quite a good example.
Lauren: It’s frustrating, too, because obviously she and her husband or partner had the need for those seats. But to really make a point of it, and point to you and say you're not a priority. That's just a nasty thing to say to anyone. But you're not the first person who's been on the show who looks young and fit and healthy and able, who's had an experience with priority seating. We've had other people on the show talk about disabled parking badges and things like that … getting judged by people. And get called out for stuff. And it's interesting, because I think a lot of people want to say something, but in the heat of the moment you get sort of verklempt.
Rachel: You don't expect it either.
Lauren: And if you're not expecting that kind of almost violent attack on you, you also have to think … are these people even going to be open to listening to the alternative here, and the real reason? Or have they just already made up their minds? And that kind of small-mindedness can be really frustrating, particularly in this chronic invisible illness community.
Rachel: Yeah, I think you've got to decide whether it's worth the energy of taking those battles on, as well. That happened about a year ago now, but looking back, it still does annoy me a little bit. I've almost gone over in my head a few times since … the sort of response that I would give now, if that was to happen again. Even now, if I get on a tram or any public transport and it's quite busy, and I grab a seat, particularly a priority seat … it can be really detrimental to make those kind of assumptions.
Lauren: Yeah, and I know in the UK … we had another young person on the show, Jameisha Prescod, a few weeks ago, and one of the things she mentioned was that Transport for London at least have started this blue badge system where you can wear a badge that says, ‘If you could please offer me a seat, that would be really helpful.’ But I don't know if that applies across transport all across the UK, or if it's just a London-based initiative? But something like that is a really smart thing. And actually, you even have badges for sale in your shop that say, “Not all illnesses are visible.” To at least give people the tip-off!
Rachel: Unfortunately, those badges are just for residents in London at the moment. But that is something I wrote to, basically, the local transport people in the city that I live in. And I did ask if they would consider implementing something like that.
I think we need a lot more people shouting and asking for it. If you ever find yourself in that kind of situation, make these people aware. And then maybe we can make it that bit easier for us in future by implementing change.
Lauren: Yes, absolutely. So we know that your experience has turned into advocacy on a larger scale. Why don't you tell us a bit about your current book, Be Your Own Thyroid Advocate, and a little bit more about the book that you're writing with Adam right now as well.
Rachel: Be Your Own Thyroid Advocate came out in November last year, so that’s six months ago now. That is essentially a recounting of my own story of having symptoms and getting a diagnosis of a thyroid condition. And then getting my health back on track.
I often talk about treating thyroid disease, Hashimoto’s and hypothyroidism in particular, as piecing together a big thorough jigsaw puzzle. And so these puzzle pieces, whether that is finding the right medication, looking at your gut health and nutrition, food sensitivities, supplements, fitness levels — all of these things — they can differ from person to person.
So, in my book, Be Your Own Thyroid Advocate, I recount those pieces that I needed to slot in, as well as many of those other pieces, interventions that other people need to do as well. But the idea was to put it in quite an easy-to-read-and-digest form. I know for me, when I was quite new to the thyroid world and I just had my diagnosis, I wanted to read all these books — but I found it quite hard to digest them. They’re quite science-y-based and quite heavy on the jargon. A lot of them are written by doctors and medical professionals, and that is great. We can certainly learn a lot from them, and they’re probably the best people to be writing these kind of books, because they have that kind of background. For those of us who are thyroid patients who are tired and have brain fog and that sort of thing, it can be really hard to absorb and digest and know what to do with that information. I was often reading a book and thinking that was a great read … but what am I now going to take from it, infer from it? Through my blog as well, and my book as an offset of that, I wanted to make information for thyroid patients more easy to understand, to know straight away … right, this is what I can now do with that information to get myself better. My book is a fairly quick read, for that reason. I didn't want to overwhelm people, especially if they're quite new to understanding about a thyroid condition. And it also includes a lot of motivational and uplifting passages and chapters as well. Just because if you’re struggling with mental health, feeling bogged down and struggling to find hope, I guess … a light at the end of the tunnel. A lot of the time when you're that affected by chronic illness, your work life, social life, and everything is affected. You can go through this grieving process and feel as if you're never going to get to live life properly again, that something's been taken away from you.
It’s part of my mission to reassure people that you can thrive with thyroid disease, you can have a really good quality of life; you don't have to be dragging yourself through every day or missing work, or coming home early from social events. You can enjoy yourself. I want to reinstate that hope in people as well, and empower other people to embrace advocating for themselves.
So that's my first book. And Book Two, which I'm working on with Adam as you already said, that's going to be called You, Me & Hypothyroidism. That is essentially for our loved ones, so parents, siblings, friends, romantic relationships. That is going to be written for them to help them understand what hypothyroidism and Hashimoto’s is, what they can do to support us, and then also have some information in there to support them, as well. I'm writing that with Adam so that I can deliver the thyroid patient's points of view. And then he delivers the loved one’s point of view, and he can share the things that he's learned on this journey that have helped him. And then it also helps me in our relationship as a whole as well. So yeah, we're really excited about that at the moment. And that's due out on the first of August. So we're just finishing up now. It's coming around really quickly.
Lauren: That is really quick! I can't wait for it to come out and to check it out. Because that is such an essential tool, isn't it … providing that support for our loved ones? Especially because it's hard for us to provide that support for them, but they obviously need it if they're supporting us. When we're tired and chronically ill, it can be hard for us to provide that. So to give tools to our loved ones is such a wonderful thing that you're doing for them. I'm really excited about that; I think that's really wonderful. And August is very close. Not long now until that one comes out as well!
Rachel: We wanted to fill that gap, in that there's just no other resource or material out there for our loved ones. Adam’s already written a couple of blogs for my website, and I've got a specific section for blogs that are written for our loved ones and those kinds of people.
There's not a book or anything out there that is dedicated to that subsection of people. We wanted to deliver that because I get asked often where to refer people's husbands or wives or siblings or friends when they're looking for support themselves, but also for further guidance.
So we're hoping to deliver what a lot of people are asking for.
Lauren: That’s really lovely. And this has all stemmed from you starting a blog, which was really just an outlet for you to to write down what was going on with you in the early stages of diagnosis, wasn't it?
Rachel: Yeah. I was diagnosed in the June or July, I think, of 2015. And then I started blogging around December, so it was when I first started the NDT medication. I logged on once a week and wrote this almost ... journal entry of what I'd experienced in that past week, and I was feeling quite hopeful that things would pick up. And it wasn't until about three months later, that I then decided to publish everything that I'd written in a book. Before that, I was just writing on this private WordPress account that wasn't actually shared with anyone; it was just a bit of therapy to process everything that I was experiencing.
And then once I published it, almost on a whim — just to kind of see if anyone else would find it useful — all this really positive feedback came back from people saying that it was nice to know someone else was experiencing the same thing. That they felt validated and understood.
And then besides just blogging about my own journey, my own thyroid experiences, I started writing other articles about mental health or informational articles based on science and the latest research as well. And answering a lot of the topics that people were asking me to cover. So it's just kind of snowballed from there, really. We’re three-and-a-half years in now. There's a lot of content on there, if people want to check it out — for your physical and mental health, if you have a thyroid condition. It’s always growing, and I'm always happy to see how else I can develop in my thyroid advocacy work.
Lauren: And obviously we’ll link to your blog as well on the episode page. You’ve also created communities because of this, and your own Facebook group and everything. So we'll link to all of that so everyone can check it out, and you can join Rachel's community, which is really supportive. And just so excellent, not only for patients, but also for loved ones and our advocates. One of the things we started touching on earlier was your experience in the healthcare system in the UK, which is, of course, the NHS. We've had a few British guests on at this point so our listeners should be familiar with how the NHS works in comparison to the US system of private health insurance companies. In what way did you find that the NHS has worked for you? And in what ways has it not worked for you? What have been the positives and negatives of that particular health system, as you've been striving to get diagnosed and treated?
Rachel: I think, as with most things, there are pros and cons. The NHS, just to make clear, is brilliant; we're really lucky to have it. It works well for a lot of health conditions and a lot of concerns. I just think, unfortunately for thyroid conditions, it does let a lot of people down.
I know for me, in terms of eventually getting diagnosed, I’d gone back and forth for years and years. But it wasn't until that five or six year mark that someone actually thought of testing for it. That was quite frustrating, just because I had so many symptoms.
I think thyroid screening should be done more regularly — across the board, across the world — but definitely on the NHS. I see a lot of people around me or in my life that I'm pretty certain could have a thyroid condition that should be tested for. But it's just not a routine thing here. People will get their iron and their ferritin count done; that’s quite standard if you go and complain — thiamine and vitamin D and things like that.
But considering thyroid disease is so common — I think it's one in 20 people in the UK have one — but they think as many as 60% go undiagnosed. That’s a lot of people, and yet we don't screen it as standard. So that's definitely something that could be improved upon.
And that is quite frustrating when it often takes us so long to get diagnosed. Admittedly, even though I was essentially diagnosed with borderline hypothyroidism at the time of diagnosis, a lot of other people are withheld medication for quite a bit longer until their levels get worse. I do feel quite fortunate that the doctor basically asked me to wait three months; I was retested, and they got slightly worse. But because I was feeling so ill, I was started on medication despite being borderline. So over here, on the range my doctor was using, normal TSH is 0.5 to 10. And I was 9.8. So I was very close to the top of the range. Technically still normal by some standards, but I was feeling really off. So I do feel thankful that I was at least started on medication despite being borderline hypothyroid. Because a lot of people are asked to wait years and years and years. Or they're forever borderline, and they’re never started on medication to see if it helps. So I'm thankful for that. Then again, I hit another brick wall.
One of the major frustrations over here is the non-option of thyroid medications. So getting T3 or NDT medications is nigh on impossible, really difficult. And even for those who have been prescribed, particularly the synthetic T3, a lot of that is being withdrawn at the moment.
So there's a lot of campaigns and a dossier that's been formed among those of us in the UK, thyroid advocates, charities and other organizations … trying to fight that right to get people back on their T3 medications or even just to make them more widely available. Here in the UK, it's incredibly difficult. They can be prescribed on what they call a named patient basis. But essentially, what that means is that they're not regulated or approved over here, and so the doctor who's prescribing them takes responsibility for them. And they have to provide, from what I understand, quite a bit of evidence as to why they're prescribing something that isn't approved. There's a lot of extra hoops for doctors to jump through, and so you can kind of understand, from their point of view, why it might be easier to not go down that route. But as with everything, we should be treated as the individuals that we are. And if your doctor cares about you enough, you would think that they would be willing to explore whatever it takes to get your health sorted, and get you feeling fit and healthy again. There are definitely ways that I feel I've had it easier than other thyroid patients. But then, there are ways it's definitely been really hard as well, as I’ve heard from other thyroid patients — not just in the UK, but worldwide. There are a lot of the same kind of issues or complaints — whether it's the testing, diagnosis, medication or any other, we seem to have a lot of the same issues wherever we are.
Lauren: I think the main thing that I see here in the US is very similar … most importantly, that this system here in the US, and the NHS, are not really preventive care systems. They treat you when you're sick. And that certainly restricts access to certain medications. And then, of course, the lack of understanding with the testing — a lot of doctors will just, as standard, as you've said earlier, just test your TSH, but they won't test much more than that. Which is really no way to get a picture of what's going on. Certainly you and I are lucky now because we know that we have these disorders, which can also be genetic. So if you have children, we can say: Make sure you're getting that tested. It's funny because my mother has hypothyroidism; not Hashimoto’s, but hypothyroidism. So I was always getting my thyroid tested, but all they were testing was the TSH, which wasn't enough. And when I got really sick, didn't explain the whole picture. So it's really where this advocacy, and learning to be your own advocate, and learning what tests you need to get taken … because this is such a common occurrence. And not just among women, but also among men. You need to be getting this stuff tested. It would be great if there were a way for us to continue to fight and make it standard that when you go for a regular GP checkup, you know that you're getting your free T3, your reverse T3, your free T4 — that you’re getting all of it tested. Given the occurrence of these illnesses. But, yeah, it can be very frustrating. Obviously, improvement is needed in both of these systems. Are there any direct ways that you can see that you could affect change in the NHS, particularly with some of these advocacy groups you're working with?
Rachel: There's power in numbers, right? So if as many thyroid advocates, charities and organizations can team up as possible, and form things like these documents or campaigns to get as many of the thyroid patients on board. We've gone through a thing where we've collected quite a lot of stories and performed documents in that way.
If we can get people to keep screaming and shouting together, eventually we’ll be heard. And we are being heard. There is movement; things are getting better slowly.
More recently, a lot of people felt like we've done one step forward and two steps back. But we've just got to keep on pushing with it. And just shouting together and seeing what we can do as a force, instead of trying to do things individually. But look, that is what everyone is already doing. If you're a thyroid patient in the UK, and you're wondering how you can get involved, you can look up the ITT Facebook group … and you can join that, and you can get involved in various sorts of ways of helping to drive this campaign forward. It's happening. It’s slow. At the moment, most of the focus is on the T3 medication, so liothyronine, which has been withdrawn for a lot of patients. And after that has been improved, we’re then looking at the NDT issue, which will be a lot harder, because it's that bit more controversial. We've got to do it, because that is part of improving our thyroid patients’ lives, and advocating for this as well.
Lauren: Absolutely. That leads me into the next question … which is about how important it is to keep talking about invisible illnesses, and how do we keep awareness alive — aside from checking into these communities that are campaigning for change within the medical system? What other resources would you suggest to listeners in order to keep the discussion going?
Rachel: Whether you have your favorite social media accounts, if you follow their blogs or their books, when you contribute into these communities, Facebook pages or groups, you share your story, and you talk to other people. And you speak to those around you as well.
So not just within the thyroid community, but your friends and family, your co-workers … make them aware of what it is that you experience. What a good day versus a bad day is like for you, and what they can do to support your health around you. It's just important to keep sharing these experiences.
You don't have to be like me, for example — I'm quite happy being very open and sharing all the details of my personal experiences online. I know not everyone is that comfortable. But you can share articles that you find particularly good in raising awareness; you can pass a book on to a friend to help raise awareness around the topic. Anything you can do …raising money for a thyroid charity … there are various ways that we can help spread awareness and advocate for ourselves and encourage others in the thyroid community. Or just the chronic illness community in general.
Encourage each other to advocate and speak up about it. We need to normalize this a lot more, I think.
A lot of people aren't aware of the signs and symptoms of thyroid conditions, in particular — let alone what kind of tests and things you should be getting done. But the more we speak about it, the more good can be done, right? Keeping quiet isn't really going to do anything. Whichever way is comfortable for you to talk about that topic. And to just dig into that and become part of this thyroid community, which is so, so passionate.
Lauren: You're right, it really is a passionate community, isn't it? I think because so many of us have been brushed under the rug … that when we find each other, we want to scream it from the rooftops! So we are quite a passionate community indeed. And there is a lot of support out there. And it's becoming more and more available. If you're able to find resources through Rachel's blog as well; obviously we’ll post links and hopefully you can find support that way. So, we've covered so much today, Rachel, and I like to wrap up my interviews with some Top Three Lists. I was wondering what your top three tips would be for someone who looks like they might be perhaps on the cusp of entering this world of invisible illness, or Hashimoto’s and hypothyroidism … what would you suggest that they do to keep their head about them?
Rachel: I think one of the things you need to avoid doing is Googling your symptoms! It can definitely quickly overwhelm you, and it almost always will lead you back to cancer, which is not what you want to do. If you think you're on the cusp — whether it's a thyroid condition or any other possible health condition — if you think that something isn't quite right, book an appointment with your doctor. And the second thing you can do, in preparation for that, is to prepare a list of your symptoms or your concerns — the things that you feel aren't quite right — that you can take along to your doctor's appointment. And essentially, really to open up to those around you. If there's ways that they can support you. I know a lot of people go to the doctor with certain symptoms; they might get tested for something and that comes back negative. And it's almost like, that’s the end of that it. There is stuff that you can do to learn to advocate for yourself and push for a second opinion. Or, suggest other possible things to look into with your doctor.
I think whether it's a thyroid condition you might have or not, if you've got these various symptoms — that could vary from fatigue to depression or aches and pains, hair loss — keep going until you get an answer. And until you're satisfied with that answer, as well.
I think I can speak for a lot of people when I say that far too many of us are sick and tired for too long. And that it takes too long to finally get that diagnosis and then get our health back on track. So if you can put your foot down and try to get to the issues sooner, then you'll hopefully get your health back on track sooner. But that essentially starts with you making that doctor's appointment, and tuning into your body and actually figuring out what it is that is making you feel a little off-center. So get rid of your symptoms and things, definitely.
Lauren: And that's also about recognizing that you're the one who knows your body better than anyone else. And if someone’s telling you that you're fine, and you’re not … trust you. Which is huge, isn’t it?
Rachel: Yeah, exactly. No-one knows your body better than you.
Lauren: Exactly. I had a guest on here ages ago say, “You’re the CEO of you.” Which really made sense to me! I was like, “Yeah, that's right! I am the CEO of this body politic!” It’s really helpful advice. Obviously, you've had to make lifestyle adjustments because of your diagnosis and trying to minimize symptoms and manage all of that. So in terms of adjustments you've made to your lifestyle … this is another Top Three list … do you have any cheats, or guilty pleasures or secret indulgences that just give you great pleasure and make you really happy and are great, even if you're having a flare-up … something that you can turn to?
Rachel: I absolutely adore baths, bubble baths, foot soaks, things like that. If I'm having a flare-up day, in particular, it's the first thing I'll do. I'll get myself out of bed and get myself in a bath. That generally just not only relaxes me and the aches and pains and helps the fatigue, like the heaviness and the tightness that you can feel sometimes. But it also puts me in a better mental space. So if I'm at a point where I'm feeling maybe a bit demotivated or feeling a bit low — because I know that progress is not always linear and that we can often have some bumps that go up and down before we get to a better place, as well. So, things like bubble baths feed my soul. Good food. In the past, that would have meant things like chocolate and cheesecake and crisps and everything that was bad for me. But in the last year or two, I’ve learned quite a bit about diet and nutrition. So, Asian food, Thai and Vietnamese food in particular, again feeds my soul; it’s not necessarily guilty pleasure. I don't think it's really unhealthy food; it's actually quite healthy for you. But indulging, ordering a takeaway, maybe, with Adam, and just kind of enjoying all of that is definitely another one. And I think, with most people, sticking on your favorite TV show … for me, that's Friends, which I know is just something that kind of takes my mind off things and makes me smile, and lets me forget about my world for a while.
Lauren: Absolutely. That's really gorgeous.
Rachel: Whatever - if people have a certain film or TV show that takes them back.
Lauren: Yeah, absolutely. I definitely have ones that I turn to. And I think we all have our favorites, for sure. Rachel, we’ve come to the end of things here. Is there anything else that you'd like to share with us? Certainly, please tell the listeners how to find you online.
Rachel: My website is just TheInvisibleHypothyroidism.com. But if put “The Invisible Hypothyroidism” into Google, you’ll definitely find me. I’m active on Facebook and Instagram in particular. So I have a Facebook page, but I also run a Facebook group. That's called The Thyroid Family. We've got 50,000 people in there now. So if you're looking to reach out to other thyroid patients and just kind of vent or chat about things, or discuss what has helped other people sort their life and their health out and get back on track as well, then that could be a really good option. Obviously, there’s my book, Be Your Own Thyroid Advocate, and my next one, You, Me & Hypothyroidism coming out in a couple of months’ time … depending on when you’re listening to this podcast, it might already be out. And I've got my newsletter that goes out every couple of weeks as well; you can sign up for that through my website — with thyroid news, blogs, if there's competitions or offers with online testing or supplements, things like that. And there's all sorts of stuff in that that kind of gives you a boost every couple of weeks, just kind of advocating and understanding your thyroid health. So there are various ways that you can get in touch with me and reach out. Obviously, I can't offer things like medical advice or interpret your test results. I do get that quite often. But feel free to reach out, and to the thyroid community. Like I say, there's a lot of us.
Lauren: Well, Rachel, thank you so much for joining us today, all the way from the UK! We're so glad to have had you on the show. And I can't wait for this episode to come out and for people to learn more about these conditions — because this is the whole reason I started this podcast! I'm just so glad to have had you on, and to have connected with you, and can't wait to hear more when the new book is out. Thank you so much for being on the show, and we hope to have you on again soon.
Rachel: Yes, thank you so much for having me. It's been great.