The World Health Organization estimates that over 750 million people suffer from some sort of thyroid condition yet about 60% go undiagnosed. Rachel Hill is a highly ranked and multi award winning thyroid patient advocate, writer, speaker and author behind The Invisible Hypothyroidism.
Summary
Nearly 60% of people with a thyroid disorder go undiagnosed for years. Thyroid disease can be a complex jigsaw puzzle, but fortunately, today there is more support than ever.
In this episode of Fempower Health, world-known thyroid patient advocate Rachel Hill shares her journey of overcoming thyroid disease. She explains several symptoms of thyroid disorder in females, common treatments, and what the “thyroid jigsaw puzzle” means. She also discusses examples of self-advocacy, navigating the emotional aspects of hypothyroidism, and lifestyle tips to effectively manage symptoms of thyroid disorder.
Enjoy this insightful episode and learn more from Rachel Hill’s books: You, Me, & Hypothyroidism as well as Be Your Own Thyroid Advocate.
Discussed in this episode:
Rachel Hill’s story about how and why she became an author and thyroid disease advocate
Examples of how you can fit the pieces of your “thyroid jigsaw puzzle” together
Important details about thyroid labs and how to advocate for the right ones
Resources for interpreting thyroid labs properly
The “spoon theory” and how it can help transform how you speak with others about your thyroid condition
Understanding your thyroid, emotions, and the common feeling of isolation
Realistic tips to help you live your life to the fullest
“For a while, I was just barely surviving; not thriving. I realized there must be answers out there somewhere. There are hundreds of thousands of people in the world with thyroid conditions— there must be people I can talk to and learn from.” - Rachel Hill
Transcript
Rachel Hill 01:56
As a child, I was always quite tired, quite achy. Had a lot of the tail telltale thyroid disease signs and sort of major constipation, not to go into too much detail. But I could go weeks at a time without casting a bowel movement. I was just quite a sort of unhappy child in the way that I was just feeling unwell a lot. But I kind of thought that everyone just felt this way and experienced a lot of these things and didn't really question it. By the time I was 16 years old, things got ramped up. So at that time, obviously we have a bit of a pandemic going on right now. But at that time, back in 2010 2009, swine flu was quite a big thing. And I caught that I was quite unwell, managed to remain at home but I was quite unwell for quite a few weeks. And even after that virus passed, I still just didn't really feel fully better, as well as I could have been. I never really felt 100% well before anyway, but I felt even less so after that. I had ongoing fatigue and muscle aches and pains mostly in the legs and mostly in the evening.
Rachel Hill 03:03
And over about five years, so up until I was around 21, I was going back and forth to the doctors with mountain sink symptoms on a pretty much a weekly basis. Sometimes two or three times a week I'd be back at the doctor saying I now have acid reflux. I'm having daily migraines, which is stopping me from being able to work. I was having hair loss, acne and really drastic eczema, my nails were breaking off digestive issues along with the constipation, I was just feeling bloated all the time. My weight would fluctuate quite easily. And I guess I just kept going back and forth in the doctor's, as a lot of his experience would prescribe different things for each symptom.
Rachel Hill 03:44
And it wasn't until I was 21 that I saw a different doctor. And by chance she just happened to run a bunch of things. She just thought you've been feeling unwell for quite some time. Let's check your thyroid, which is obviously what it turned out to be. She checked a bunch of vitamin and mineral levels such as B12, and Vitamin D and my iron status. And we looked at other things like mono and other kinds of viruses and illnesses to an era 21, almost 22 years old, I was finally diagnosed with Hashimoto's and the autoimmune disease that then often leads to hypothyroidism.
Rachel Hill 04:20
And alongside Hashimoto's, I was diagnosed with borderline hypothyroidism. So that essentially means that there was so much inflammation and attack going on towards my thyroid gland that my thyroid hormone output was then decreasing and essentially failing. And this is why my body was basically falling apart.
Rachel Hill 04:39
And it was these illnesses that I've had in my teenage years that at each.. at each stage, they ramped it up that little bit more. And I think by the time I was 21, I worked within event management. So I was in a very fast paced job. I was often working long, sort of 12-14 hour days, I wasn't eating very well and at weekends, I would go out and drink with my friends. And it was a bit of this perfect storm, which then ultimately ended in my body just completely stopping completely failing, and eventually getting that diagnosis. By which point I couldn't even get out to bed.. on out of bed on a daily basis. I needed my boyfriend, my now husband to aid me up and down the stairs to help me get in the shower. I was really very alert. 21 years old, I felt like a 91 year old and a 21 year old body. That's yeah, that's the best way I can put it really.
Georgie Kovacs 05:33
I would definitely recommend for those listening to to read Rachel's book, because it's hearing the whole situation, I think a lot of people will relate. And quite honestly, I might almost recommend this to anyone who's dealing with chronic illnesses. Because the path, I think, is pretty parallel to what I'm hearing a lot of patients going through with anything chronic, but also you provide so many recommendations on what people can do. And there's like a whole chapter even you have on how to advocate for yourself. So I would honestly recommend reading the details of Rachel's story.
There are so many jigsaw puzzle pieces I like to refer to as we all have this big thyroid jigsaw, or anyone with a chronic health condition. And it's often about slotting those pieces into place and figuring out which ones apply to you. They're the same ones won't apply to everyone because we're also individual and we're also unique.
Georgie Kovacs 06:12
I have to say, and you know, I can't even imagine everything that you went through. And, you know, you're clearly such a powerful woman to have gotten through this. And kudos to your husband, and in the support system. So I have to just say there was one chuckle there was one point in the book where I did laugh out loud. So the quote that I love in the book that did make me laugh out loud, is "my skills include reading a whole email without absorbing a single word." So that was my laugh out loud moment. But I think that's a great way to summarize what it was like to deal with this.
Georgie Kovacs 06:49
So how, how did you crawl your way out of this?
Rachel Hill 06:53
I did feel a lot of shame when I was in that blame at that point, I think a lot of us do. And I don't know what else to say other than living with chronic illness can be hard. It can be really, really hard. And it can affect so many different aspects of our lives. And at 21, I felt... I felt shame about not being able to attend work that I was at the doctor's every week, that I had so many ongoing tests and blood tests and appointments and referrals to specialists. And I think dealing with that at such a young age especially can be hard because you're seeing you're seeing your friends go out and live a more normal life. And I think that really was part of what drove me to find more answers and figure out how to get my health and my life back on track. I, for a while, I kind of resigned myself to living, I guess, a half life just kind of existing, not really thriving, just surviving. And then something clicked to me that I just decided that this wasn't going to be enough. And I wasn't I wasn't going to just give in that easily. And that I knew there must be answers out there.
Rachel Hill 07:56
They say that there are 1,000s of people, hundreds of 1,000s of people around the world with our conditions with thyroid disease. And I thought there must be people out there I can talk to people I can learn from. And that's really where it began, I did what a lot of us do. I looked for Facebook support groups, I Googled for support forums, I just wanted to talk to other people who would get it, people who would understand and just helped me feel less alone and less crazy, I guess.
Rachel Hill 08:22
And from there, I started to learn a lot about the kind of thyroid medication treatment options about how there is so much more that we can do than to just take thyroid medication. So if you need hormone replacement medication, then clearly your body needs it. But you can do so much more in terms of supporting yourself with how you sleep, how and when you exercise, what what you do and don't eat, figuring out all those other parts of your life, those parts that I guess form it more holistically, just stress management, and even things like that, as well as the other test to ask your doctor for supplements that may or may not help.
Rachel Hill 09:01
There are so many jigsaw puzzle pieces. I like to refer to it as we all have this big thyroid jigsaw or anyone with a chronic health condition. And it's often about slotting those pieces into place and figuring out which ones apply to you. The same ones won't apply to everyone because we're also individual and we're also unique. But yeah, if you can sort of take small steps. I think that was my key thing. I felt quite overwhelmed to begin with.
Rachel Hill 09:29
I didn't know where to begin within the thyroid patient community that at first I took so much from and then as I progressed on my journey I was able to then give more back into and hopefully help other people. There was just so much information out there so many people saying to try this and try that and look into this and ask your doctor about this. And yeah, it was so hard to know where to begin. And so I guess I just created this mental list of things. I could look into things I could try. Almost having like 50 tabs open in your brain I try to keep on top of it all. And, and I just started with small manageable steps.
Rachel Hill 10:06
And step by step, I got a little bit of mental clarity back, I felt a little less fatigued. And then with that I could do a little bit more. And I sought out the help in terms of a functional medicine practitioner who I implemented into my health care team, as well as my regular GP practitioner. And I started to build a support system of people that helped to support me so that then eventually, I wasn't just doing it all on my own either.
Rachel Hill 10:35
But yeah, I think there's just so much information out there for not just our patients, anyone with any kind of physical or mental health condition that you often just don't know where to begin. And sometimes the first step is just to take a first step, just to dip your toe into the water, take a baby step, try something. And if nothing else, find your tribe, find other people that are living what you're living, people that will help you feel understood and listened to and less alone and start there.
Georgie Kovacs 11:08
You know, I love in the book, how you refer to the thyroid jigsaw puzzle, I will never forget, probably the most impactful. And this woman had posted online, she was in her 40s. And she said, "You know, I don't know how many embryos I should use." And she went on to say that she's had all these miscarriages, etc. And these were her last embryos. I read it and I said to her, you're asking the wrong question. You need to find out why you're not getting pregnant, because these are your last and best to you're in your 40s. And until you solve your jigsaw puzzle, you're wasting your time. This is not the right question.
Georgie Kovacs 11:49
So what.. the path that you went on is you found out that desiccated thyroid is much more effective for you. You had gotten frustrated because you couldn't get the prescription because the conventional doctor refused to prescribe it. And it was such a powerful moment, because you went in there with your data, you read out all the studies and all the data. And they basically said, "No." You know, I think it's more than just this type of medication, tell me about it. But I think it's really important for people to understand the context of that journey. So first, tell me how that felt when you were like, I think this is going to work. But I have to wait three weeks, because that wasn't in the book. And I was like, right there. I was like, tell me more about how that felt.
Rachel Hill 12:33
Yeah. And it was huge. I think for anyone listening to make the decision to self source medication, it's.. it's never, never something to take lightly. And that wasn't for me. And like, like we mentioned previously, it was only once I got to the point that I felt like I didn't want to and couldn't live anymore.
Rachel Hill 12:52
But my boyfriend at the time, he essentially took the reins and said, Look, you've told me about this medication. Before we've asked the doctors. They said no, we're going to find another way to get hold of it. And I expressed my concerns. But at the same time, I did agree with him that we had to try something because what did we have to lose? I guess we were at that point. Yeah, he was a great support in helping me get that information together so that we could locate a reliable source for it.
Rachel Hill 13:26
And I remember at the time, he actually sort of tapping away on the laptop for the evening, going into these patient forums, going through various sources contacting suppliers. I was sitting next to him on the sofa and I was kind of drifting in and out of sleep because I was just so tired and fatigued all the time. I used to sleep sort of 14-16 hours a day. It was crazy. But yeah, he just turned around to me and said, right, that's it's ordered. He'll be here in a few weeks. It was coming from Thailand, and we're here in the UK.
Rachel Hill 13:58
And it was this really surreal moment of, "Oh, I guess we're doing this then. We're giving it a go." And I was definitely scared. I was definitely anxious and nervous there. It also gave me this glimmer of hope that perhaps this could be the thing that helps me. I wasn't looking for a complete magical cure or a special bullet that was going to solve every problem, but I just needed things to improve, you know, at least 50%. That would be amazing.
Rachel Hill 14:26
And yeah, as we waited, waited for it to arrive. There was just a whole mix of emotions a lot, a lot of worry, a lot of kind of hopefulness and then when it did arrive I was just kind of in shock I guess I thought this is it. I guess we really are doing it. It's real. And as I kind of spoke about in the book, I started it. I followed certain protocols that I talked about in there and we started out quite slowly and yeah, I had a bit of a rocky start to begin with it because my body was so used to the original medication - I was on levothyroxine - but within a few weeks, I suddenly I just like every cell in my body started to wake up. And I started to remember what life used to be like before I got chronically ill.
Rachel Hill 15:11
And yeah, as time went on, I just responded better and better to it. I think it took about three months in total for me to get to the highest kind of capacity that that medication was only ever going to get me back. And then by that point, I was feeling so much better that that's when I started to investigate those other jigsaw pieces and start to implement other things because I suddenly had so much more clarity in my head and so much more energy that I could then devote time to that to start figuring out those other pieces.
Rachel Hill 15:43
But yeah, I've had a very sort of rollercoaster ride of a journey with desiccated thyroid medication, and I was on the self sauce kind for a few years. I'm now thankfully privately prescribed it, which I think I do cover in the book. Once I was financially able to see a private doctor here in the UK, because natural, desiccated thyroid just isn't routinely prescribed on the NHS at all.
Rachel Hill 16:11
Yeah, once I could see a private doctor of which I do still see, and I've been able to have it now privately prescribed for two and a half years. And it just makes a lot of difference. Because it takes a lot of that worry away about where something's coming. And if you're going to be able to get hold of more as well. Obviously, it's a lot more regulated this way. So Yep, absolutely. feeling a lot more settled now.
Georgie Kovacs 16:36
To set context, though, because what I don't want because some may listen to this and not have the capacity to read the book, which again, I do encourage because there's such a holistic picture you paint, I think there's no way in this short time we can cover everything in the book is about three hours to read. And so it's very reasonable. It's not like someone's gonna have to spend six weeks reading every single scientific study or something, you do a very nice job in simplifying but being thorough. And so but just again, in case someone doesn't read your book, this is not a desiccated thyroid pitch. I think the point for you was that that's what worked for you, that was one of the pieces for your jigsaw puzzle.
Georgie Kovacs 17:12
So Synthroid and levothyroxine, are the other two medications that tend to be commonly prescribed. So for anyone who is prescribed that or, and then maybe is struggling, like give us that context, just so people understand why I brought up desiccated thyroid and why it happened to be your solution, just in case someone is having similar struggles and trying to solve for it.
Rachel Hill 17:37
Yeah, so for me, I had been on levothyroxine for about five or six months. And I could just tell that it wasn't really working. And my NHS GP admitted that it wasn't really helping me because the symptoms, I did have fatigue, brain fog, muscle aches and pains were only getting worse. And then I was also gaining new ones.
Rachel Hill 17:56
When we tested my thyroid hormone levels, the TSH result never really moved. And you can get a copy of your test results from your doctors while you ask them to print them out. That's a good part in learning to advocate for yourself, and you can understand what is being tested. But yeah, my Free T3, my Free T4, when we checked those, my Free T3 was always kind of low within range, my Free T4 would be on the higher side of the range, which showed that I was taking plenty of the pneumothorax, in the T4 only medication. But for me, and for another three patients but not everyone. It wasn't converting into much T3 at all. And T3 is the active thyroid hormone, whereas your T4 is the storage hormone. So when you're taking levothyroxine, and the idea behind it is that your body will then convert some of that T4 into T3 and then bingo, that's what helps you feel better and helps to remove symptoms. But for some people like me, we don't always know why. But we don't convert an adequate amount of T4 into T3. And that's why on T4-only medications, we can still feel quite rubbish. And so that was the case for me. That's why then when we added in the natural desiccated thyroid, which includes both T3 and T4, it took away that need for conversion. So I instantly had readily available T3 and that's why it made such a difference for me. But yeah, this is why it really depends on how your body works.
Rachel Hill 19:19
There are so many different factors that can impact why certain things work for different people. And the T4 medications such as Synthroid or levothyroxine, clearly work for a lot of people. I hear from a lot of people within my community that are feeling great about them. They work for a lot of people that it's... I.. for me, it's just a case of putting the information out there that if you're one of the people that it doesn't work so well for, then it's worth knowing that there are other options. But yeah, if you're feeling good on your T4-only medication, then there's probably no reason to look to change it. And there are people who take T3-only as well. That's probably a conversation for another day. But yeah, there are so many options and it's just a case of figuring out what your body needs.
Georgie Kovacs 20:01
I think that you learned and I did this too with my fertility journey. It kind of forces you to learn self care and to make sure you prioritize self care because I think as women especially we are really, really bad at that, like I posted this weekend. How many of you are good at self care? No, it's 50-50. And then the next question I asked was, how many of you feel guilty? And everyone said, "Yes." And it was so fascinating.
Georgie Kovacs 20:29
You know, talk to us about that holistic journey.
Rachel Hill 20:32
I think it ties in well, with that you say this, then this idea of self care, because I think a lot of us when we think of self care, we think of bubble baths and face masks and going to meditate and medicate that meditation retreats and things like that. And actually, for me, self care is eating in a way everyday that fuels my body, or avoiding the foods that make my thyroid symptoms flare up and give me a Hashimoto's flare. And for me, self care is getting myself to bed by 10pm every night, because if I don't, and I have a toddler, that gets me up at half past six in the morning, again, I'm going to be starting the day with less energy and put myself into a Hashimoto's flare within a few days. So yeah, I think it really ties in nicely to the idea of self care.
Rachel Hill 21:16
But as far as patients, it's not all just about that - bubble baths, face masks, painting your nails, it's doing the things every day that helps you keep your condition under control, and helps you feel as well as you can do. And yet for me, that encompasses all these large jigsaw puzzle pieces, such as eating away that I am keeping my blood sugar balanced. And I think before I used to grab a lot of convenience foods, fast food, processed food, things high in sugar, and carbs. And I don't want to demonize certain foods in any way. Because at the end of the day, it's all about balance. But now when I eat, I'll sit down. And I'll think how can I make this meal have a good proportion of protein to healthy fats to a little bit of carbs, to getting some greens on my plate and focusing on shifting my eating to be a bit more balanced and looking at food and how it's and how it's going to feel me there, it's going to make me feel good, or it's going to make me feel bad. That can have a big impact on my day to day. And that was actually one of the key things because I didn't realize how much sugar or how many carbs I was eating at the time that was bouncing my glycaemic index just all over the place.
Rachel Hill 22:26
I want to feel the big things that made a difference for me was going gluten free. And that's quite a big one within Hashimoto's community. Obviously, with all of these kinds of lifestyle interventions that we talk about, it is a case of it's not one size fits all different things will work for different people. But we do hear repeatedly that Hashimoto's patients find a lot of help going gluten free. And I put it off for a while because for me, it seemed like it seemed like a lot of faff, it seemed like a big thing to do. When I eventually decided to commit to it and give it a go. And my brain fog completely disappeared. My joints and muscle aches and pains completely disappeared, my heart palpitations disappeared, going gluten free has made such a big difference for my health. And that's been one of the biggest things that I've done besides switching thyroid medication.
Rachel Hill 23:17
And then looking at things like your vitamin and mineral levels. And these are all things that your doctor can easily test for as well looking at your iron levels, your B12, your Vitamin D. A lot of us with various chronic health conditions often have anemia, low Vitamin D, low Vitamin B12, even low zinc and things like that. And that can really be contributing to feeling tired and brain fog and demotivated and perhaps even depressed or anxious. So these are the things that we can also look at and just check that we've got enough of those things within our systems.
Rachel Hill 23:50
And you know, simple supplementation, which your doctor can then talk to you about can make a whole world of difference as well, because I found that my vitamin D and my iron were almost at a zero by the time I was diagnosed with a thyroid condition. And so it wasn't just about treating the thyroid hormone levels, it was a case of looking at, like we say the whole picture and making sure that we're not missing anything else. Because if we've got all these different things going on, it can be hard to know where the fatigue is actually coming from or, or the muscle aches and the joint pain. Is it coming from the third condition? Is it coming from the low vitamin D or the low iron? So we've really got to look at everything and make sure that we're just treating everything and giving everything a bit of time. And because while your gut health is so important, I worked with a functional medicine practitioner to look at balancing my gut and improving my gut health. So looking at probiotics, digestive enzymes and eating a diet that was feeding the good good bacteria and again, that made such a difference in my hair and my skin and just overall mood anxiety improved a lot.
Rachel Hill 24:57
Yeah, there are I think I have a really comprehensive article on my website as well as my book going into detail about it, there are probably 100 different things we could look at, if not more. But for me, those were some of the big things that, once I'd addressed those, I was coming on in leaps and bounds. And I was making so much progress in how I felt. As well as looking at simple things like making sure you're getting to bed for a good time. And you're prioritizing getting good sleep and good press. I think a lot of us take for granted just kind of getting into bed after midnight and then being up at 6 am, ready to go to work. And we're often just not getting enough sleep. And that can exacerbate everything to see if for me, it's a case of keeping all these things in mind trying to keep everything in check every day. Because then it's just helping us to keep everything more balanced on a more regular basis. Instead of having these highs and lows of feeling awful, feeling great. We can keep things a bit more even if we're able to just keep on top of these little day to day things.
Georgie Kovacs 25:59
I wanted to ask you about soy. Goitrogenic, I just wanted to just in case people hadn't heard of specific things you can do with those types of foods, I'd love for you to list out what they are, but then also addressing soy. Because I think sometimes there's oversimplification on social media. And then I see people getting frustrated and posting. I'm sick of people saying you can eat soy. Everyone can eat soy. And so just there's this, like Battle amongst the opinions. And I would just love to get your perspective. And if you could share with me, like, this is what we know, this is what we don't know. And this is context just so people understand that I think the one one or the other opinion is not fair to any of us. So talk to us about what you've seen.
Rachel Hill 26:46
It's just it's never helpful to make these blanket statements. As we've already said, there's no one size fits all. Personally and all that I do, I will never say that I recommend everyone goes gluten free or dairy free or soy free. And I also personally don't think it's necessary to avoid all goitrogenic foods or things like that as well. For me, going gluten free is what's helped me. I've tried things like dairy free for several months. And it made no difference to me whatsoever whatsoever. But it did increase my stress levels, because I found it that much harder avoiding yet another thing from my diet. So at that point, you then have to weigh up how how much something really is worth if you're not seeing any any physical improvements, but it's making your stress levels a lot worse than that is then making you more tired and perhaps affecting your hormones and gut health, then yeah, you've got a real situation on your hands that way as well.
Rachel Hill 27:20
So yeah, as with any dietary changes, it's all a case of trial and error and seeing what your body personally tolerates and what it doesn't tolerate. Other things to keep in mind can be caffeine and alcohol too. Those are two things that I've completely removed because they would give me what I realized were giving me really severe migraines, and were giving me a lot of cystic acne as well. So yeah, there can be some other things too. Just try removing from your diet for a few weeks and seeing what happens.
Rachel Hill 28:08
In terms of goitrogenic foods, they are things like Brussel, sprouts, broccoli, peanuts, and cabbage, all of your kind of a lot of your leafy green foods. And what we know is that they are goitrogenic in their raw state. And it's generally believed that if you cook them until the crunch is gone, then that generally means that those qualities have been removed and therefore should not be harmful to your thyroid health. I personally don't, don't particularly limit or avoid those foods, I also don't eat them in excess either. I tend to eat everything in quite a sort of balanced amount, but I do generally cook them until they're not really really crunchy as well. And for me personally, that works fine, I don't notice a negative effect for other people. And they may eat those foods and feel a negative impact. And it's the same for soy as well. I have reduced my soy levels before and I haven't really seen any impact. These days I don't really track it. I don't. I don't ingest a lot of soy. Anyway, I'm not really at either end of the scale. I don't eat a lot and I don't actively avoid it. And again, my health is great day to day.
Rachel Hill 29:22
Currently my Hashimoto's is in remission and yet my hypothyroidism has been stable and well managed for years now. I don't have any symptoms day to day and so I know that what I am personally doing right now isn't what is working for me and that is with my sort of gluten free diet and then just trying to eat helps me otherwise around that and for some people they do also find going gluten free soy free. There's also the autoimmune protocol diet. There's the ketogenic diet, you hear so many different diets around and it can be just mind blowing to know whether any of them could help you or let's try and see if any of them could help you.
Rachel Hill 30:01
But yeah, just know that there isn't one magical diet for all of us out there that is going to fix our symptoms or get us off medication, which is the claim of some of them. Always be wary about that. And just keep in mind that our bodies are so different. And it's really just a case of trial and error. Stay wary, take one thing at a time and just see what your body personally reacts to. I know thyroid patients who haven't really made any dietary changes, and yet, they're out climbing mountains, and you know, they've got these really active lives and their body hasn't needed them to make the dietary changes. And that is just their story, his mind is different to theirs, and yours will be different to mine. So there are some key ones that it can be worth knowing about. And then you can see if it affects you or not.
Georgie Kovacs 30:51
Have you heard of Mymee? Ao I interviewed the founder, Mette Dyhrberg, and she had an economic background. So she did, she used her background and did modeling, to try to figure out what was going on with her because she for, you know, I think at least a decade, if not more was going to doctors and was on all these medications just kept getting worse and worse and worse. And so she essentially cured herself and went back to the doctors. And their response was you weren't sick in the first place. It was horrific. But nonetheless, what her tool does is they have coaches and they use an algorithm to figure out your triggers. So instead of doing an elimination diet, it's like a science based algorithm so that they can figure out your triggers. And I think they do more than just food. But it's a really interesting concept, because they're finding strange things like chicken. I've never been on any diet when you look at AIP elimination diets and things like that chicken is never on the list to eliminate. So just something to be aware of. And if you want to monitor and follow her, she's doing some really cool work.
Georgie Kovacs 32:01
Now a couple of other things. So one is the spoon theory, I think this is so important, because it also ties to a couple of blog posts that you even put in your book, where it's about educating people who are in your life.
Rachel Hill 32:15
Yeah, so the spoon theory, I by no means created it. It's a very common sort of theory and metaphor within the chronic illness world. And it essentially refers to your baseline of Energy of which you start the day. So if you imagine starting the day with, say 10 spoons, spoons, a unit of energy, having a shower might use up a couple of spoons, walking to work might use up three or four spoons. Depending on what work you do, if it's quite physical, you might use more spoons compared to if you're sitting at a desk or doing something less physical. And so it basically represents the way in which our energies as people with chronic health conditions can be depleted much quicker than those without, that's to put it as simply as possible.
Rachel Hill 32:59
So the spoon theory really helped my now husband, Adam, understand what it was like for me day to day and how it could differ as well, depending on various factors. So if we had stayed up late on a Friday night binge watching something on Netflix, and we perhaps didn't go bed until one in the morning, and then we were up at seven o'clock the next day, I would start the day with less spoons with less energy than to use for the rest of the day. Because as we were just talking about, I hadn't really taken care of myself the day before. And so I could get to midday and then be all out of spoons that day because I've already done a bit too much the day before and so I'm kind of going into my reserves at this point. Whereas if I'm well rested, if I'm eating well then I might start the day with the full 10 spoons or nine spoons. And I might get to later on in the day before feeling like I've completely run out of energy or like I do now I can get to bed feeling like I still got some spoons left.
Rachel Hill 33:55
It's a really good metaphor and analogy that you can use for friends and family around you, perhaps even co workers or your line manager. If you don't want to use spoons, you could use anything else you could think of, of a battery sort of depleting over the day through percentage. But yeah, it really helped me understand my health condition in a completely different way. I didn't realize that other people experienced having a different amount of energy on different days or different severity of symptoms on different days. I don't think I'd even consciously realize that myself I just came across the spoon theory and I just realized something just clicked into place that okay, this is it. This is why some days I feel I can take an open take on the world. And then if I have a crazy, really busy weekend where perhaps I stayed up late or drank some alcohol, been running from A to B to C to D to see lots of different people. Then come Monday I can be in a.. in a Hashimoto spire and have absolutely no spoons left. It really helped me just really compartmentalize it makes so much more sense. And it also just helps with the friends and family around me. And it's still a phrase that we use. Now if I say, early in the morning, Adam will see me kind of hobbling around the house and say, Are you okay? And I'll say, No, I've not got many spoons today. He knows instantly that I've not slept very well, perhaps the toddler has had me up all night. And so I've started the day with less energy straightaway.
Georgie Kovacs 35:23
I want to commend you on the life that you built in this support system. Because not everyone may understand what it looks like to be taken care of. One question I did have is that journey of bakwin when you were 21, and you're newly diagnosed, and now you're not able to keep up with your friends. And I know when many of us go through these life changes, like I know, when I did, it's like, your whole life is about trying to get better and get over things. And I know even though I've struggled with, how do I talk to friends about this, because I don't want to sound like a burden, I don't want to sound depressed. And I know I've certainly had to change where I spend my energy and who with.
Rachel Hill 36:07
Pretty much my whole life, I've been a perfectionist and a bit of a control freak in certain areas of my life. So I think, to have this health condition happen to you, it can just feel like the whole world is just spinning out of control, and you can't hold on to anything, everything is just changing and slipping away. And as the friend who I mean, I still am in some aspects now but more so before my kind of health crisis, I was the friend who was organizing parties on an always constant basis and get togethers and lots of social gatherings and, you know, maintaining lots of different friendship circles, and yeah, really enjoyed an in, thrived and thrived in that environment. And when I got sick, that had to change because I no longer had the energy and I no longer felt well enough to be posting all of these great parties and organizing to go to these really interesting places as teenagers or people in their early 20s. Or, you know, doing all these fun activities and bringing different friendship circles together, I was just too sick to take that on anymore.
Rachel Hill 37:11
And so one of the kind of good things, I guess, to come out of that grieving process that I went through when my life changed so drastically, was that I learned and the people around me also learned that I could no longer be that friend that did everything and was essentially everyone's mum and looked after all our social lives. And I had to take a step back. And by doing so, I think you, you always kind of discover the friends that are going to stick around the ones that that will put into a more two way relationship instead of a relationship was feeling one way, if you're, as I was, then I was often in certain relationships, the only friend really trying to organize to see them or Yeah, put the time in to keep it going. And when I could no longer do that, inevitably, certain friendships did kind of wane or they at least fell silent for a while and then perhaps picked up again later on. You go through so many different seasons in life that I like to believe certain friendships come in at certain times to teach you certain things. And some friendships might come and go as the seasons change as you have other things in common and not so much and you mature and you find who your tribe really are. And yeah, the people who can adapt, learn to understand what you're going through and grow with you. They inevitably stick around.
Georgie Kovacs 38:37
It's so true in life. It really, really is, and you put up beautifully. So thank you so much for being open to sharing that.
Rachel Hill 38:43
I guess learning to advocate for yourself. My key message is to be our own thyroid advocate. And that encompasses understanding your health condition, understanding all the in's and out's, so that you can go into the doctor's office feeling armed to ask the right questions and feeling on to know how to look for a doctor that's going to work with you and be right for you. And I think you touched on it slightly earlier. So I won't go into too much detail.
Rachel Hill 39:06
But one of the biggest things you can do as well as getting on the right medication is understanding what your thyroid levels mean and looking at what we call optimal or optimized thyroid levels. And often our test results can fall within quite a large range. And the ranges are quite unspecific and sometimes outdated, too. For a lot of conventionally trained doctors, they're happy with your results as long as they fall somewhere within the range, but because they're so wide, and so unspecific, that might not mean a lot to you and your health. So when we talk about optimal thyroid hormone levels, or just optimal levels, this is a much more specific place within the range. So yeah, obviously they can differ from person to person.
Rachel Hill 39:48
Usually within the thyroid world, we talk about a TSH below 2.0 or 2.5. Whereas an original range would be up to four, five and sometimes even up to 10, which is obviously a lot less specific. So when we talk about TSH being below 2.0 or 2.5, that just means that it's optimal in the way that a lot of people feel much better when it's at that point compared to anywhere within that huge range. And yet, it's the same for your Free T3 and T4 levels as well. If you head to my website, you'll find a lot more sort of more in depth information around that as long as all as well as all the sources. So I've put all of the references as well along with the article so that you can see where those numbers come from.
Georgie Kovacs 40:28
And so here, we're kind of almost starting with I know I have a thyroid condition, what do I do. Um, so that's also a great, great reference, and also my interview with Victoria Gasparini, as well - The Fed Up thyroid.
Georgie Kovacs 40:38
So if you're open to it, what would be a fun fact, Rachel, that you would like us to know about yourself.
Rachel Hill 40:45
I love a good fancy dress party. I don't know if that's what you call them in the States, but essentially a themed party where we can get dressed up in something quite creative. So I love Halloween, I love Christmas and the idea of Christmas parties. Now that I've got a child of my own, my plan is to throw him wild parties every year so that he can dress up in something fun. I will be getting dressed up with him as well.
Georgie Kovacs 41:09
Oh my goodness, thank you so much. Well, I'm getting on an airplane and you have to invite me to one of your parties. I'm letting you know when I'm in the area and I'll text you to see if you're throwing one. I am impressed with you and so proud of you for doing so much out of the struggles that you had. Just given everything you wrote in the book. I'm sure there's even deeper stuff in there. And I can only imagine, really thrilled and honored that we got connected and I've had this chance to connect with you.
Rachel Hill 41:40
Thank you so much for having me on. It's been an absolute pleasure.
Resources
Rachel’s Website, Newsletters, Facebook Page & Instagram
Spotify Playlist: Thyroid Disease
Episode: Thyroid Disease: You’re Not Alone
Read more: Thyroid Self-Advocacy Tips
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