Even though thyroid issues aren’t always visible, they’re extremely common, especially among women. In Australia there are about 60,000 new cases of thyroid disease each year. Even scarier: Most people with thyroid disorders don’t know they have them. That’s why it’s crucial to understand what your thyroid does and what you might experience when something’s off.
Here are the basics: The thyroid is a little butterfly-shaped gland that sits at the base of your neck. It produces thyroid hormone, which helps to control your period, fertility, metabolism, heart rate, weight, mood, and energy levels. When it’s not working properly, it can have major effects on your life.
Here, seven women share how their thyroid conditions affect their day-to-day life, their thyroid treatments, how they manage their thyroid symptoms:
1. 'A TUMOUR WAS MESSING WITH MY THYROID'
“I’ve had thyroid issues for a long time, but was only diagnosed two years ago with hyperthyroidism [an overactive thyroid], when I found out I had a brain tumour that was suppressing my pituitary gland, which controls the thyroid. It’s impacted me a lot throughout my life. First of all, it’s caused me to be much, much shorter than my whole immediate family—they’re all around 6 feet—almost a foot taller than me! I’ve never had a regular period, either. I only had it three times in high school, and then it never came back. I was always told by family docs that it was because I was an athlete and I ran so much.
"In college, I started birth control and that got my cycle back on track. I have to take it to this day, and I know now I may have trouble conceiving. As I’ve gotten older, my appetite has been all over the place, nonexistent one day and crazy strong the next. My weight fluctuates easily if I don’t work out regularly.
"After having surgery to remove my brain tumour, I got on a medication to regulate my thyroid hormones. In the first few months, I was insanely thirsty all the time. I could never drink enough water. Luckily, that went away, but I’m still working with an endocrinologist to find the right dosage.
"I’m a high school biology teacher, so I get to share what’s going on with my condition in class. I also have a ton of support from my family and my fiancé, Matt, who will let me vent about whatever my symptoms are that day. For me, the most helpful tool in dealing with this has always been running. I don’t drink or smoke, so running is my stress-release outlet, and it actually helps reduce my thyroid symptoms. It’s often the highlight of my day, and it gives me energy.
"I’ve definitely made changes to deal with this condition though. I don’t just eat whatever I feel like anymore; I make sure to eat healthy foods. At the beginning of all this, I thought I would never be able to manage all the changes I’d have to make, but I’ve gotten through it by keeping a positive mindset. I am here and I am living, and that's all that matters!” — Sarah Ritchie, 27
2. 'I WAS BORN WITHOUT A THYROID'
“I was born without a thyroid, so I was diagnosed with congenital hypothyroidism [underactive thyroid] at nine days old. I have no idea what it’s like to have a functioning one, and that impacts me every day. I get tired very easily and try to sleep whenever I have the option. I’m hungry all the time, so I’m very aware of when I can squeeze in meals and snacks into my schedule, which isn’t easy as a cosmetologist with lots of clients to work around! I’m usually fighting to stay awake by 9:30 p.m.
"I've been on various doses of thyroid hormones since birth. When the meds are working well, my thyroid symptoms are far less dramatic. I am far less moody and am more enjoyable to be around, I sleep a little less, and I have about a couple more hours of energy. I still have an endless appetite for everything in sight, though, and I get dry skin and hair, and gastro issues. When my meds don’t seem to be working and I notice a big shift in my mood, I supplement with an anxiety and depression medication, and that helps a lot.
"In the past 18 months I’ve gained a lot of weight that I just can’t seem to lose. I’ve tried diet plans and working out every day. Slowly, I’ve learned what works for me and how to be more proactive to avoid more weight gain. I don’t always love my body when I look in the mirror, but I’m getting there, and my family and S.O. help me realize when I’m being too hard on myself.
"I’m in a few Facebook groups for people with thyroid issues and reading those posts helps me know I’m not alone in my symptoms or experiences. Having that support is really helpful; people will post healthy recipes and are very positive and uplifting!
"I’ve also started meditating at the end of each day before I go to sleep. Releasing any of the negativity that happened throughout the day relaxes me and gets me in a good place for the next day. With my job, I spend all my time taking care of other people and trying to help them feel good, so I try to make sure I carve out moments to give that to myself too. I use my 25-minute drive home as me time, and sometimes I’ll call my mum to recap our days. Those things always make me feel better.” — Allison Moore, 23
3. 'I GAINED 20 KILOGRAMS IN 8 WEEKS'
“I found out I had hypothyroidism 12 years ago when I randomly gained 20 kilograms in eight weeks. It was really alarming, as I’d always been slender. The weight gain also came with intense fatigue and a psoriasis flare-up. I had trouble finding a doctor that wouldn’t dismiss my symptoms and treat me like a middle-aged woman seeking diet pills. It took months to get someone to take my seriously.
"After several appointments, blood tests, and scans, I was finally prescribed medication. I didn’t see an immediate change in my symptoms, but gradually, over several months, I began to notice that I was not as tired, and my psoriasis began to respond to thyroid treatments again. The weight gain was another matter. It took almost three years for me to get back to my normal weight, which was really frustrating at times. The fatigue that accompanies hypothyroidism is very hard to deal with, and carrying the extra weight did nothing to help that. I can remember, at its worst, I would literally be making plans for bedtime as I made my bed in the morning—I just never felt fully rested.
"I try hard to get enough sleep and to eat lots of fresh vegetables now, and am mindful when I notice fatigue, a change in my weight, or a flare up of my psoriasis. And of course, I follow up with my doctor on a regular basis.
"I don’t think people always understand that the symptoms patients experience with thyroid conditions are life-changing and can be very depressing. The mood changes also contribute to the already debilitating fatigue. Don't be offended if someone you know with a thyroid disease becomes less social, and please don't give them dieting tips or advice. As my doctor once told me, ‘Trying to lose weight with hypothyroidism can be like pushing a boulder uphill.' It is not for lack of trying, or laziness!” — Lorie Hohneke, 53
4. 'HYPOTHYROIDISM GAVE ME TERRIBLE ANXIETY'
“I was diagnosed with hypothyroidism two years ago, when I started noticing that my anxiety was through the roof and I was having panic attacks regularly. I had to take short-term disability from my job at the time. I lost 9 kilograms, which isn’t common for hypothyroidism, but I was so stressed out I didn’t want to eat, and my throat felt weird and swollen, which made it difficult to swallow.
"I had my thyroid levels checked and they were totally abnormal. My thyroid was swollen too, and causing me crazy panic. I was scared when I was diagnosed, but I also felt realised that I knew where this anxiety was coming from, at least in part.
"I take Synthroid every morning when I wake up, and then wait 30 minutes to take any other meds or eat. I take a daily anxiety medication, too. I feel much better when I take my meds, and if I forget them, my symptoms are awful.
"It’s hard to talk to people about it sometimes because people without the condition sort of forget about their thyroid and how much it does. I have family with the disease and it’s super easy to vent to them about what I’m going through when I feel like my mood changes because of the hormones. That always seems especially unfair because women already have to deal with hormonal mood swings!
"To manage my thyroid symptoms, I try to stick to a healthy diet. For me, that means avoiding lactose, because it gives me a lot of digestive issues. I work out five days a week. I’ve become really in tune with my body. I know how I feel when my thyroid hormone levels are off so I go into my doctor and get blood drawn. Depending on the results, they’ll adjust my dosage of Synthroid.
"I also meditate and have mantras that I repeat when I’m feeling uneasy. Because the feeling of my throat swelling and the shortage of thyroid hormone combine to make my anxiety increase, I’ve talked to a therapist about what I can do in the moment to manage it. The most helpful thing I’ve heard is to breathe—seems obvious, but it’s really important—and make up a mantra to go over in your head. I tell myself ‘You’re okay and you’re alive and you’re getting through this.’ It can really help.” — Tori Soat, 23
5. 'I NEEDED SPECIAL MONITORING DURING MY PREGNANCIES'
“I was diagnosed with hypothyroidism about 12 years ago. I’m naturally very high-energy, so it was difficult to spot in me, but I’m glad I understand the weight gain and random waves of exhaustion now. I wish I had known earlier, because it was even harder to understand those symptoms as a teen.
"Now I’m on Levoxyl, which helps tremendously with my symptoms, but sometimes my hormone levels still fluctuate. My nails will get weak and I’ll be more tired than usual—which is really hard to notice when you’re a mum of three, believe me. I get my levels checked through blood tests every four months. So much can impact hypothyroidism, especially pregnancy, so I have to stay on top of it.
"During my first pregnancy, my physician and OB didn’t monitor my thyroid. Since I didn’t know any better, I assumed my levels were normal and my medication was working. When I gave birth, they told me I was so lucky that he was born 'normal' because my levels were so off it could have caused major birth defects. That was 100 percent scary, especially when you’re overwhelmed already immediately after giving birth. So needless to say I saw an endocrinologist for my second and third pregnancies and was monitored in weekly appointments. During both pregnancies I had to change my medication dosage drastically.
"To keep things in check now, I eat healthy and exercise. It helps to manage it, but it’s also super important to pay attention to my body and see a doctor regularly so it’s closely monitored. It’s important to know that you know even more about your body than a blood test will show. You have to speak up if you have symptoms.” — Noelle Guerin, 37
6. 'I STARTED EXPERIENCING BRAIN FOG'
“I was diagnosed first with hypothyroidism in 2004, and then specifically Hashimoto’s [an autoimmune disease that impacts the thyroid gland] in 2015. Before my first diagnosis, I noticed a few symptoms. I definitely had brain fog; doing simple math in my head that used to be easy was suddenly hard. I got cold easily and lost some of my hair. I was constipated and bloated. It was really frustrating, especially the weight gain and brain fog. I was quite active and ate well, and had always been that perpetually skinny person. At work, I had always been quick-thinking, and I felt embarrassed that my recall wasn’t there.
"I got on medication in 2004. It helps my thyroid symptoms but they’re not totally gone. It’s been tricky to find the dosage that feels best for me. It’s been challenging to find a doctor who wants to work on figuring that out with me, and not just get me within the safe range.
"Weight is still a challenge, but I started following Dr. Izabella Wentz after I got the Hashimoto’s diagnosis, and then went on the Virgin Diet. I avoid gluten, soy, peanuts, dairy, and sugar. It’s helped me control my symptoms and drop 10 stubborn pounds.
"I’m lucky enough to be retired, so I’m gotten rid of the stress that came with a crazy job in tech, and I can exercise every day, practice yoga and stretch.” — Vicky van den Berg, 55
7. 'I STRUGGLED TO GET PREGNANT'
“When I was diagnosed with Hashimoto’s two years ago, I had no idea I was suffering from any symptoms. I always blamed the issues I had on other things, or just thought that was the way I was. When I gained 38 kilograms after graduating high school, I thought it was just because I stopped swimming competitively. My husband thought I was just a forgetful person who couldn’t concentrate in conversations. Now I know that the weight gain, the exhaustion, and brain fog was caused by my thyroid.
"Luckily, I’m on medication now. It works wonders but I’m constantly adjusting the dosage. My husband and I had difficulty getting pregnant, and it was so heartbreaking to be taking the meds and trying to get it under control and then still not having it work. It was a slow process—a year of trying and adjusting my dosage over and over—but eventually we did get pregnant. It was scary then too, because if my levels weren’t on order throughout pregnancy, they could cause cognitive developmental problems for my child. We got through it, and we have a beautiful little boy now.
"I’ve made a lot of lifestyle changes to deal with my symptoms. I read to de-stress, I’m more active, and I eat healthier. It can be very discouraging to feel like you can’t lose weight even when you stick to a strict diet. But I feel lucky to be where I’m at.” — Alexis Fruia-Lopes, 32
This article originally appeared on Women's Health US