Big Feels, Bad Decisions

I was diagnosed with Hashimoto's disease when I was 27. So I've had it for the past 14 years, and it has not been easy. When I was 27, there was a struggle. One, to get diagnosed, and two, to get treated properly. So if there's anybody out there struggling with this disease, I'm going to talk about my experience and how I currently live with it today.

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When I was 27, I was going through a massive life transition. There were so many things that were changing in my life at the same time. I lost a dog. I left a relationship. I left an affair. I had a toxic relationship after that. A lot of relationships. It was mostly just men trying to use me and take something from me, and when they didn't get what they wanted, they made me the problem.

And I had just been laid off from my job and I had started with a new company, and I don't think I was really over the layoff, or the shock that came with that experience. And I was trying to figure out, "What am I doing with my life? What's happening?"

I remember I got really sick one day. Like, I've never been this sick. I still think about how sick I was this day. And I assumed it was the flu, because it was going around. And I could not get out of bed. Everything hurt. I couldn't get to work. I called in sick. My mom brought me over grilled cheese and tomato soup. And I was just sicker than a dog.

I even went to the hospital. I sat in emerg. I was there for two hours before I saw someone. I didn't see a doctor. I saw a nurse who took me back to check me over, and I was like, "I think I'm dying. I think this is death."

And he was so smug. He was like, "You have the flu."

And I was like, "I don't think this is the flu. I've had the flu before. This is not the flu. I think I'm going to die."

And he was so annoyed with me. He was not having it. He clearly had a very long shift and he was just not having it. I'm like, "I need to see a doctor. There's something wrong."

And I was fucking mad, because I was so sick. And to even get to the hospital to see a doctor... I really did think I was going to die. Like, you guys, I've never been sick like this in my life. And I still think about it. It was not the flu. I don't think it was the flu.

So I went home and I didn't die, but I was very, very sick. And I was still not feeling great. Like, I think it was months.

I was in this job for about two years, and I remember just not feeling good at all. I was cold all the time, like frozen, especially after I ate anything. I was gaining weight like crazy. I was going to the gym all the time. I've always been fairly active. I've always worked out. But I was going to the gym and I was gaining weight, and I was like, "This doesn't make any sense." So I ate less. I stopped eating as much, and I started working out more. And I was still gaining weight.

And I was exhausted. The exhaustion would hit me around like 3 in the afternoon and it would last for two hours, where it would just hit me like a freight train. I just needed to go home and lay down. I could not function at my job. I was off work at 5 o'clock, and when 5 o'clock came around, I was at home on my couch.

And I wasn't noticing these symptoms. They weren't abrupt enough for me to mentally make note and think, "Oh, something's wrong." I was just like, "I'm tired. It's been a long day." Or, "Ooh, I'm cold. It's freezing in here. Someone give me a heater." They were just subtle symptoms that I would not have picked up on, like, ever.

And it wasn't until a friend of mine mentioned, "Hey, you should get your thyroid checked. That's how I found out about mine."

I'm like, "Well, what does the thyroid do? How do you check a thyroid?" And obviously I learned biology in high school. I knew there was a thyroid. It was important. It did things. I didn't think of it. I never would have thought to check it.

So I got my results back and my doctor calls immediately. She's like, "Um, yeah. So your TSH is 19."

So for anybody that doesn't know what your thyroid does or what kind of role it plays in your body: your thyroid essentially is responsible for your metabolism, your temperature, hormones. It controls a lot. And if it's not working right, you're not going to feel good.

So your pituitary sends TSH to your thyroid, and that triggers your thyroid to produce a hormone called T4. And T4 is sent throughout your body, and your liver and your kidneys convert T4 into T3, which is a hormone that your body uses to support all of those functions, like your internal temperature, your metabolism, everything.

And so if your body isn't converting properly, or if your thyroid isn't producing T4, you're going to have an imbalance in your body.

And a lot of people just live with the symptoms and they don't really think of it. They just are like, "Oh, it's age. I'm just tired a lot, or I'm cold a lot. Oh, I guess I'm just gaining weight because that's my body." No. Get your thyroid checked if you have any of those symptoms.

So the way that they test your thyroid is by measuring how much TSH is in your system. Because if your TSH is high, it means your pituitary is frantically producing TSH to try to get your thyroid to make T4, which will then trigger your kidney and your liver to produce that T3 that your body needs.

So if you have elevated TSH, it just means your thyroid's not producing T4. If you have low T3 but high T4, it means your liver and your kidneys are not converting the T4 into T3 very well. And it all just creates this domino effect of issues in your body. It's kind of a perfect storm.

So when I got my results and my doctor said, "Oh, your TSH is 19, like, you need to be medicated" — typically doctors recommend a TSH should be between 1 and 4. So for mine to be 19, I'm like, "Oh, no wonder I don't feel good. I don't have any T4."

And that being said, it is very common for people to have a TSH of 4 and still experience significant symptoms. Like the fatigue, brain fog, weight gain, being cold all the time, cold intolerance. It's very common to experience those symptoms even at a 4.

So I spent a lot of time arguing with doctors on, "No, like, my optimal range I've found through time for myself is a TSH of 1 or under." And that's going pretty lean. Like, some would say, "Oh no, that's going to put you in hyperthyroidism, like an overactive thyroid." But for me, no. I don't feel good at 2. I don't feel good at 3 or 4 or 5. I feel like I can operate and I feel like my body is working its best at a 1 or under. So that's been a constant struggle with doctors in my life, to get them to understand, like, "I've been dealing with this for 14 years and I know where I feel good."

So anyway, when I originally got diagnosed, I went in understanding that my TSH was at a 19 and I had to start taking T4, which is essentially levothyroxine, which the brand name is Synthroid. So that's the synthetic hormone that doctors typically prescribe if you have hypothyroidism, which is what Hashimoto's causes. And I'll get into the difference of what Hashimoto's is and what it's doing, and what hypothyroidism is specifically.

But essentially, this started my journey of finding the optimal dose of T4 that I needed to get my body regulating itself and functioning better. And that was a three-year process.

So I started at the lowest dose possible. I think it was like 12. And it was irritating, because obviously my TSH is 19. They could have started me higher. But essentially they start you on the lowest, and you're basically titrating yourself. You're like a human experiment. And they're trying to find out what dose is the best, what dose is going to get you in balance, what dose will get your TSH lower.

So I started at the very lowest dose. And I didn't feel any better. And I was getting so frustrated, because my symptoms were very strong and I really didn't feel good.

So I took it upon myself to double my dose. And you guys, I don't recommend this. Like, don't ever double your dose. If your doctor gives you a dose of something, just listen. Because that did not work in my favour. That was not a smart thing to do.

I actually started having symptoms that are similar to dementia or amnesia. Like, I would do things — and it's me that's doing it, but I'd have no recollection that I did it. Like, zero. And that was terrifying when I realized that's what was happening.

And I was working at the diamond sorting facility at the time. And there's a process called riffling that you have to do, to riffle off parcels for government evaluation. And you have to pay very close attention in this process, because your numbers have to be exact. And when you're working with diamonds, everything that gets signed out has to come back signed in exactly. Like, no one can leave the facility if there's a stone missing or if a weight doesn't balance.

So I'm doing the riffling, I'm creating these sales parcels, and I'm punching everything into Excel on the right pages with the right dates with the right numbers. Everything's good. I weigh the parcel back in. We're done for the day.

I come back the next day and I'm checking the sales parcels, and I'm noticing there's discrepancies on the Excel sheet. And I'm like, "These numbers don't make any sense. This date is even wrong. Who did this?"

And everything is signed off. Your initials are on everything. There's accountability everywhere. And I'm looking at the spreadsheet and I'm seeing my initials, and I'm like, "What? Oh, that was me? I did that? That's impossible. I pay close attention to detail. I'm very meticulous in my riffling. There's no way I did this."

But no. It was my initials. I'm the only one that signs into this sheet, to this page, that has this information. And it was 100% me that put the wrong date and the wrong weights, and I had to redo everything. And that just shocked me.

And I kind of had a realization that it was because I'm doubling my medication. I'm frustrated with how I'm feeling and I think I need more, but more was not the solution. More sent me into a bad place. So I stopped doing that.

And basically, when you start out on your medication, you have to get blood work once a month. They'll get you on a dose, they want to monitor it. It'll take a month for your body to kind of level out on the dose that you're taking. So every month, for three years, I had to go and get my TSH checked.

And you guys, I hate getting blood drawn. Like, I can take needles. I can take vaccines. I have tattoos. I don't have problems with needles going in my body, that's fine. But when stuff comes out of my body, I lose it. I get weak. I start crying. Like, for whatever reason, my body starts crying, like, uncontrollably. I feel like I'm going to pass out. And it's just this very uncontrolled response that I have when I give blood.

And I mean, I've had to do it every year ever since. So I do it and I can manage, but the internal struggle and the energy that it takes to give blood is unreal. I don't like it. So to have to do this every single month for three years was really pissing me off. And the fact that I started at the lowest dose and worked my way up was so frustrating.

But anyway, I'm going through this process. And at this point I quit working at the company that I was working at, and I had moved to the island at this time to study at VIU. And I started working with a naturopath, because I was sick of Western medicine. I was so irritated. I didn't feel like they were helping. I still didn't feel good. I was still gaining weight.

And anybody that's gone through the weight gain — and you're sick, and when you're looking at yourself in the mirror and the person looking back isn't you and you don't feel like you belong in your skin — it is the most frustrating, depressing feeling on earth. Everybody that's gone through it, anyone that's going through it right now, my heart goes out to you, because it is absolutely awful. Like, it was the worst three years. I hated how I felt. I hated how my body felt. I knew it wasn't right.

So I was so fed up with Western medicine, I went to see a naturopath who prescribed desiccated thyroid extract, which is essentially pig thyroid. Like, you're taking a natural form and it's the same thing. But the problem with the natural T4 is that they can't get the dose precise. It kind of varies.

So it might be a natural form, and this natural form works for some people. Some people prefer it. Some people feel better on it than Synthroid. But what I found is the natural form wasn't precise enough for me. It was throwing my TSH readings all over the map and it wasn't keeping me consistent. Whereas T4 is very specific on the dose and the measurement, and it's controlled and it's synthetic, so they're able to get very precise with the dose. Whereas the desiccated thyroid extract is variable. They can't be precise with each dose.

But I did try it, and I was open to anything, because I just wanted to feel better.

It didn't work for me. So I did go back to T4, and I was still upping my dose. My dose started at 12, and eventually we landed at 137. And each dose kind of goes up in increments of 12. So you can imagine, like, that's why it took me three years to land on the dose that I needed to regulate my body.

And it was such a frustrating process. But during that time I was going to many different doctors. I was trying to get on with an endocrinologist, like a specialist who does thyroid, who is the person I probably should have been talking to from day one. But because of our healthcare system, that was a two-year wait where I was. And it was so frustrating. I didn't have time for that. So I was going from doctor to doctor to try to get someone to listen to me. This is what's wrong with me, help me. I don't know what I'm doing, but I know I don't feel good.

And I finally saw one doctor that tested my anti-TPO, my T4, T3 — did a full sweep of thyroid metrics that they measure. So the anti-TPO kind of measures your immune system response, and if that metric is elevated, then that's an indicator of your immune system as having a response to your thyroid.

And that's how I came to understand that I actually had Hashimoto's, which is specific to your immune system attacking your thyroid.

And this is an autoimmune disease. And autoimmune disease can be triggered from environmental factors or hereditary conditions. And unfortunately for me, I have autoimmune diseases on both sides of my family. So on my dad's side, my aunt had lupus when she was just 14, and she had passed away at 16. And on my mom's side, my grandma had MS and she passed away in her 60s. But I did see her very healthy, very vibrant as a child, and I saw the disease just kind of slowly deteriorate her.

So autoimmune does run in my family. I do have a bit of a predisposition for it.

And I firmly believe that that day that I was dying, and I went to the nurse who told me I had the flu — I'm fairly certain I had the Epstein-Barr virus, which is also known as mono, and can absolutely trigger an autoimmune disease.

And so, finally understanding what had caused the thyroid issues, I can now understand what might be going on in my body.

And Hashimoto's is an autoimmune. It is your immune system attacking your thyroid. There's no way to reverse it, from what I'm aware of. I haven't looked into it in years, since I've been on the right medication and I've slowly been able to reclaim my health. But understanding what I had gave me the clarity of what was happening in my body.

And with Hashimoto's, there's no way to prevent it. There's no way to stop it. And it essentially just continues to attack your thyroid, turning your thyroid into scar tissue and rendering it completely useless in your body.

So I don't actually have a thyroid anymore, and I have to take T4 for the rest of my life to supplement that hormone that my thyroid would have naturally produced.

So it's frustrating, but it's also very manageable. I take my Synthroid every morning when I wake up. I have to be mindful that I don't take calcium. I can't take supplements within four hours of taking my hormone replacement therapy. And that's fine. I've managed it for the last 14 years.

There are different things that can affect the uptake of your T4 and can kind of throw your thyroid out a little bit.

And one of those is the GLP-1. So I recently discovered that my TSH is becoming elevated, and it could be due to the use of a GLP-1, just because GLP-1 really slows down your digestion and absorption quite significantly.

My blood work has shown that my T3 is low, my T4 is high, my TSH is high, which is telling me that my pituitary is producing a lot of TSH, causing elevated T4, and something's going on with my liver and kidney because my T3 is still quite low.

And the recommendation my doctor gave me for that was to take more T4. But my T4 is already elevated. More T4 is not going to cause more T3. The issue is in the conversion itself. So something's happening that's affecting my liver and my kidney, and we've got to look at that.

I do have an appointment with an endocrinologist, and if they tell me to stop taking the GLP-1, obviously I'm going to. I'm going to prioritize my health and balance my body at the expense of all the benefits of GLP-1. I'm going to listen to my doctor. I think that's important.

I think there's a fine balance between our own research and understanding our bodies, and taking medical advice. And I feel like when you're working with your doctor, when you're going through a new diagnosis and you're trying to get to the bottom of things, and you're a little scared and you're a little unsure — listen to your body, and tell the doctor what you want to look at.

Because the doctor is not the ultimate authority. The doctor is an advisor. They know a lot. They've seen a lot. But they're not the authority on your body. You are the authority on your body. You know what's wrong with yourself before anybody else will know what's wrong, whether it's an intuitive sense, a sign or a symptom, whatever the case may be. You are the authority on your body, and a doctor is an advisor who is going to help you get to a cure, or get to the understanding of what's really going on in your system.

So I approach all of my doctor visits with that in mind. Like, let me explain as best I can and do my own research on what I think I'm experiencing. Then let's get down to what the issue could be, and let's do all the tests that we can so that we can get the most accurate information and how to tackle this issue.

Because when I was going through the initial diagnosis, it was awful. It was a really hard experience. And for anybody that's going through that right now, my heart goes out to you, because it's not a fun feeling to look in the mirror and not be able to recognize yourself.

Be patient with where you're at. Be patient with the process, because it's going to be a process no matter what the diagnosis is, no matter what's going on. Accept where you are in the moment and know that things will get better. Or you're going to get more information. You're going to find a doctor that's going to help you. You will overcome the situation, no matter what the case may be.

And just know that you're not alone. There are so many people out there who have the same thing. You can join a support group, find a doctor, find people that are talking about the thing that you have or the thing you suspect you have. Reach out to friends and family to understand your family history, because so many diagnoses come from family history and environmental factors, like illnesses that can trigger certain things in your body at certain times.

And the lesson that I learned throughout this process was just: be patient with your body. As frustrating as it was, it ultimately worked out. I was able to find the right dose for me. I was able to do a ton of research and understand what's going on in my body, and what happened in my body, and how I need to take care of myself moving forward, and how to approach my relationship with the doctors.

Listen to your doctor. Don't double your medication, because that's not going to help anything. Just based on my experience — it didn't end well. It wasn't good. And I learned to listen to my doctor, work with a doctor, ask to see a specialist, get yourself in the right hands, and be patient with your body. Be patient with the process, because all you can do is do your best.

And for me, it was just a combination of enormous stress and uncertainty, and the Epstein-Barr virus that I guarantee I had. And that ultimately could have been the catalyst that triggered my autoimmune response, and led to a three-year process of getting the right medication to get my body in balance.

I was reading about it, and one in eight women will be diagnosed with a thyroid disorder, and every four out of a thousand women will be diagnosed with Hashimoto's. So there are people out there that are going through it. It's a frustrating disease. It's a frustrating thing to manage.

And yeah, just remember: you're not alone. There are so many people that have the same diagnosis. And especially if you have other things going on with your body, if there are additional imbalances that you're experiencing, it can be really mentally exhausting. And there are a lot of groups out there that you can join and people you can talk to, and I strongly urge you to work with your doctor, to see a specialist, and find the right treatments for you.

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