This post is long overdue but I thought it important to share because when I’ve previously mentioned my experience with thyroid disease I’ve had readers reach out asking about my experience as they, too are sufferers. I was in the thick of battling this disease from early 2012 through 2015. It is only recently that I’ve felt strong enough and comfortable enough to share my story. And it was very hard for me to pen this post but I did so with the hopes that it will help even just one person…
To level set, I thought I’d share a few key things to know when it comes to thyroid disease:
- While it is a small gland, the thyroid plays a huge role in many bodily functions. It produces thyroid hormones which maintain the body’s metabolism. It is housed just above your Adam’s apple.
- There are two types of thyroid disease: hypothyroidism (under active thyroid) and hyperthyroidism (over active thyroid).
- Thyroid disease is more common than you think and 1 in 8 women will experience some sort of thyroid disfunction in their life. Thyroid disease is more common in women than in men.
My Battle with Thyroid Disease
Long before I was ever diagnosed with hyperthyroidism, I had signs of the disease. Most noticeably were my irregular periods, my difficulty falling asleep and my severe hot flashes. I remember living in San Francisco and getting off the bus to walk a few blocks to my office and I’d arrive to my desk and have to throw open the nearby window and stand in front of it drinking water until I cooled down because I was sweating and so overheated from a short walk.
When I moved to New York all my symptoms seemed to get worse. And upon mentioning my excessive hot flashes to a doctor during a visit for a sinus infection, I was finally properly tested and diagnosed with hyperthyroidism or Graves’ Disease in early 2012. You can attempt to treat hyperthyroidism with medicine which was the first course of action my doctor and I tried.
Much of battling thyroid disease is a waiting game which makes treatment of it extremely frustrating. It’s monitoring your symptoms carefully and routinely getting blood work. I was getting blood work done almost every month at one point. And traveling an hour to see a doctor at Columbia just as frequently. While on the medication my symptoms didn’t get better though and, in fact, I felt much worse.
My hyperthyroidism and the drugs caused me to have an appetite that was in overdrive and I suffered some major lethargy.
I was coming home and able to eat a whole pizza by myself. I let myself go during the year that we attempted to treat the disease with medication and before I knew it I had gained 30 some pounds. And I didn’t even recognize myself when I looked in the mirror. As someone who had always been naturally thin it felt like my body had turned on me. I tried fad diets and went brunette because my hair color felt like the only thing I could control about my physical appearance. And I stopped taking outfit photos or showing myself on social media and avoided all events.
I was dressing only to be comfortable and to hide my body. And I was miserable on a day-to-day basis always sweating and experiencing swelling. (There were days I could barely get shoes on my feet they were so swollen…) I developed a goiter which made my neck look huge (a goiter develops when your thyroid gets enlarged). And I could barely climb stairs or walk to the subway without breaking out into a full sweat.
After determining the drugs weren’t working, my doctor recommended the other common course of action for treating hyperthyroidism: radioactive iodine. (Surgery can remove your thryoid as well but it is only done now typically in patients that are pregnant and can’t receive radioactivity).
In April 2013 I went in for the radioactive iodine procedure which effectively “kills off” your thyroid.
It was terrifying and my last resort. Iodine is essential for your thyroid to properly function and it is the only gland in your body that takes it up and holds onto it, so to speak. When you take radioactive iodine your thyroid is rendered non-functioning. And you are subsequently put on a drug that mimics your thyroid function called Synthroid. While the procedure itself is “just” swallowing a pill, the pill is radioactive so you have to go into a lab with technicians who are totally covered up and protected. It’s scary and intimidating. They hand you the pill with tongs out of a special protected container. From there you swallow it and then you must go home and be quarantined for three days to ensure your radioactive self doesn’t come in contact with other humans – particularly children – while the radioactivity is in your system.
It is crazy. My roommate had to move out for those three days and I couldn’t leave the house. You have to take precautions such as flushing the toilet multiple times after you’ve gone to the bathroom, washing all your linens in hot water and keeping the shower running for 10 minutes after to ensure all traces of radioactivity are washed away. During this quarantine period I was lucky to have friends who sent me shows to watch, meals I could reheat, letters to open and read. And lots of well wishes but it brought a new meaning to “cabin fever.”
Worse yet though on my journey?
My first radioactive iodine procedure didn’t take. The measurement I was given wasn’t accurate and therefore I spent another nine months following Round 1 uncomfortable and no better. As a result it was determined that I had to go through the whole process again in early 2014. (Not to mention I had to pay for both procedures…) It was soul-crushing, frustrating, exhausting and debilitating.
Like any disease you battle, the process of fighting this disease feels incredibly isolating.
I felt depressed and alone and anxious and was left wondering if I’d ever feel better. I was petrified of the radioactive iodine process because I didn’t know what it would do for my future fertility or how my body would react. Meanwhile I was beating myself up every day for gaining so much weight and feeling like a failure. (All the while self-medicating with food…) I had next to no motivation. I was exhausted, jittery and experienced brain fog. My hair was falling out in clumps, my skin changed, my stomach was unruly, my heart was often racing. And I could go from full-on sweating to physically shaking from being so cold.
My emotions had me struggling to see how I would ever see this through and I felt sorry for myself regularly. As someone who is highly driven, I had zip/zilch/nada in the drive department. I secluded myself because I was embarrassed to be seen in my overweight/sweaty state and that only made things worse. In short: my body was on the fritz for years with this disease and it was brutal.
When I look back on this battle it all seems like a blur. It truly was a storm I was battling that took over many aspects of my life. I was in my late 20s and feeling like I was falling apart.
That being said, I found a light at the end of the tunnel.
Following a successful second round of radioactive iodine in early 2014, I now take Synthroid every morning. While I despised the idea of taking medication every single day, Synthroid is what brought me back to life and had me feeling normal again. It did take several months to sort out the right dosage (too much Synthoid would send my heart racing and I’d lose the ability to fall asleep; too little I’d feel sluggish) but once we found the magic dosage, it was like I was rightsized in life again. Slowly I regained my motivation, my sleep improved, I began working out regularly and I began losing weight. Nowadays I get my blood drawn every three months to test my thyroid hormone levels to ensure my drug dosage is accurate.
Thyroid disease is an extremely personal disease because of how everyone’s body handles the hormone imbalances differently. Every day can be different and every person’s path back to wellness will, of course, be different as well. For me, it was the radioactive iodine that finally helped put me on the road to recovery.
I was extremely lucky to have parents who helped support me throughout the battle. Both emotionally and financially so that I could see a leading doctor in Manhattan. And my friends were guardian angels throughout providing unconditional love and support. I can’t imagine going through this experience without them.
Today I am healthier than I have been in a very long time.
Nowadays I find that every morning when I go to take my Synthoid I am actually grateful for it as it allows me to operate with normalcy in life. This disease will always be with me and it makes weight maintenance extremely difficult (my metabolism is essentially now manufactured by drugs). So I always have to be careful about my diet and my workouts which is challenging on a daily basis. It took years of attempts to embrace my “new” body that emerged after my diagnosis. My days of being a size 2 were suddenly long gone. And today I’ve now resolved the ownership I feel over my new body and keeping it fit.
It was a very, very long journey back to feeling like myself. The experience really showed me how important it is to take care of ourselves and prioritize our health and wellness. It made me realize it is ok to ask for help and to let other things take a backseat when you need to focus on you.
I, of course, am not a doctor so my experience is not meant to be guidance or any kind of medical advice but given thyroid disease is so common in women I felt it important to share how my journey went and how it was resolved. If you are having certain symptoms that feel out of the norm, go to a doctor and request they look at your thyroid hormone levels. And if you are battling thyroid disease know that things do get better!
As always I am here to answer any questions. I appreciate you taking the time to read this personal post. xx
p.s. my journey to weight-loss and wellness and my best healthy habits.
“What doesn’t kill us makes us stronger”…
Meghan, you have certainly had your share of health issues in your short, young life. Thankfully you have felt the support of loving family and friends. It is so important not to isolate ourselves during our darkest hours, often easier said than done. Sharing your story in today’s post is huge! I know you to be a very nurturing and caring woman, so I am certain that you will hear from, or even randomly meet others in need. Keep your heart open always…to give and to receive. Graves’ Disease is a lifelong battle so keep yourself current with education and knowledge. And most important, listen to your own body and be your own advocate.
You be you Meghan. You are amazing!
Blessings and love, Nanc
You always have the best advice, Nanc! Thank you for the thoughtful words and always being there – no matter how far we are! You are so special to me – sending you lots of love!
Wow — thank you so much for sharing your story. I do not have thyroid disease, but I really found myself drawn to your story. thanks again!
Thank you so much for the kind encouragement!!
Thank you for sharing this! I don’t have a thyroid problem, but am going through a health crisis and it was so nice to read and not feel alone in the struggle. And it is nice to see that there is a light at the end of the tunnel.
Lauren, I’m so very sorry to hear you’re going through a health issue right now. They are so hard. Know you are never alone! It’s hard to ask for help sometimes but so therapeutic. I’m sending you love + healing and prayers for a speedy recovery!
Thank you for sharing!
I have been going through health issues the past 9-10 months (eventually diagnosed with Rheumatoid Arthritis in April this year) and it has been an incredibly lonely process. I’m still in the period of ‘am I ever going to wake up and feel well again?’ but I am hopeful from other’s stories that I will eventually get there.
Ugh, Sara I am so sorry to hear! I can truly relate to the loneliness and I’m sorry you’re experiencing it. Keep up your hope!! It will get better! Sending prayers to you for healing <3
Thank you! And thanks again for opening up.
Thank you for sharing your story Meghan. I know it’s been painful and it takes a lot of courage to open up about all the ways disease impacts your life. I have Hashimoto’s and my husband has Graves disease (weird, right?). I’m so grateful that we have a terrific doctor who has allowed both of us to experiment and find solutions that work. For me, it meant letting me be guinea pic with an off label drug that has kept my thyroid levels stable for three years now. For my husband, it has meant several years of trying various things before we resort to surgery or radioactive iodine. Thankfully, we discovered an autoimmune diet called the Wahl’s protocol, developed by a doctor to treat (successfully) her own MS. It has slowly transformed my husband’s life, and we’re hopeful that continued progress will mean he can keep his thyroid. Graves is so tricky as you well know. I’m so glad that you’ve been able to embrace the new you. It can be hard not to be resentful of life pre-disease – I got diagnosed with Hashimoto’s and Celiac within two weeks of each other, and it took me a while to realize that life “after” wasn’t better or worse, just different, and that was okay. Your story is so powerful and heartbreaking, and an inspiration. Thank you for sharing it so that others will know they’re not alone.
Oh Marcia I’m so sorry to hear both you & your husband have thyroid dysfunction. It’s so hard! And with Celiac, too? You are so strong! Thank you for taking time to share your story with me and for your kind words – it means a lot. Sending you prayers & love
Once again you write a post that makes me as a reader really love your blog and the fact that you open up to us, and share this as I am someone who struggled with Thyroid earlier in my teens but has been a huge struggle again dealing with hormonal imbalances, figuring out that soy actually can mess with Thyroid medicines (now having a dairy allergy so I turned to soy first), and just that when going through disease it can be truly isolating. I am right now dealing with hormonal issues that as a woman feel isolating and aren’t things naturally we all talk about. Your story is just what I needed to hear during this time and it made me feel so much less alone in dealing with just what my mom keeps reminding me is life. Yet, everyone’s journey in life looks a little different and just like you I look now grateful at my body for allowing me to work out on days I want too, and sleep on days it needs rest. Thank you for sharing again! It really has made my day.
Thanks for sharing!
Thank you for sharing this very personal story. I always appreciate your transparency! I also went through my own journey with thyroid disease and after 2 years taking synthroid daily, a few years ago I was taken off the pill and my thyroid seems to be balancing itself well on its own. I still get tested annually.
So sorry you also have battled this disease but appreciate you sharing!! How amazing you’re figuring it out off drugs. Wishing you continued wellness!
Meghan, all I could think about through reading this is that you are one incredibly strong lady. I admire you for sharing your story and what has come from it. Cheering you on!
Aww Caitlin – THANK YOU! That means so much <3
I am so deeply moved by your bravery, authenticity and transparency in sharing a difficult and highly personal wellness journey. Your story helps show us readers that many beautiful, successful, admired and “connected” bloggers like yourself not only can have major health issues and face the challenges of isolation and anxiety — but also can overcome them over time! This post came as a burst of inspiration and support when I really needed it: I’m currently typing from a hospital bed for treatment for my intractable chronic migraine (a migraine that hasn’t gone away for 8 months). I still have a long way to go on my own wellness journey and it is so helpful to hear from others and feel less alone. Thank you for continuing to push yourself to share all of your amazing self with your readers. We love you exactly as you are.
Hugs and healing vibes,
Carolyn, thank you for the kind + encouraging words! They really touched me. And I am SO sorry to hear about your migraine. I was diagnosed with chronic headache in the early 2000s and generally have a headache in some form of intensity every day and have had my fair share of migraines and they are just downright awful. I know how debilitating they can be and I am SO sorry you’ve been experiencing the pain for so long. HANG IN THERE. Keep fighting and I’ll say a prayer you’re healed very soon. Sending you a big hug!
so glad to know you’re doing better. how has it impacted your ability to exercise?
Hi Jess – I had no energy to exercise for a long time. I was super lethargic while I was on the drugs and before I had radioactive iodine. One I had the radioactive iodine procedure my metabolism started to be mimicked and I once again could find the motivation and energy to work out. That being said I work out a lot and don’t see a ton of drop in weight because of no longer having a thyroid so it is a constant struggle!
thanks for sharing this story meghan! hopefully it will help others struggling with health issues to talk about it more (when they are ready). it’s so lonely to deal with these types of things, but you never know who else might be dealing with something similar and can lend some guidance and/or support.
Thank you so much for the kind words, Erin! I so appreciate them <3
Thank you so much for sharing. My mom and sister both suffer from hypothyroidism and I know how much it can affect their daily lives. Because of the dosages, it’s so easy for the medication to make you feel out of whack. I have so much respect for you sharing your story with us and letting us understand a much more personal part of your life!
So sorry they both suffer from it, too! So, so common and definitely always feels like an uphill battle. Thank you for the kind words – they really mean a lot, Melanie!