Managing the Thyroid Disease Jigsaw Puzzle

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.

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