Graves’ Disease. Now what?

Photo: Boka Grandi in Curaçao.

So, you just found out you have Graves’ Disease. Now what? If you’re like me and like countless others, you probably turned to the Internet to try to make sense of all this. You did a Google search, which likely led you to this blog post, and countless other sites, forums and support groups.  You’re scared, shocked, upset and tired of keeping up with the symptoms – let’s give it up for #TeamNoSleep. 

Well, guess what? You are not alone. Nope. You’re not. Welcome to the prestigious club that has welcomed the likes of President George H.W. Bush, Barbara Bush, Millie (the Bushes’ dog… true story), Missy Elliott, Rodney Dangerfield. . . and as you begin to tell your story, you’ll soon uncover that Graves’ is one of those diseases that’s likely affected a friend or perhaps a friend-of-a-friend. No one talks about it, and that’s why no one really knows about it. But as I mentioned before, you are not alone.

So now what? While I’m no expert as I have only been on this journey for five months, (although pieces of a much larger puzzle are coming together and it looks like this journey started a few years ago for me) I can share the following advice that I hope helps. Here are some valuable lessons I’ve learned, that I hope will help you:

  • Patience – Graves’ Disease will teach you patience. Things will get better, but it takes time. It’s not something that can easily be controlled in a couple of days nor weeks. It could take months and for some, years. But keep in mind there’s a light at the end of the tunnel. Stay strong.
  • Appreciation – Before Graves’, I took for granted the little things like going to the gym, blasting music and singing as loud as I could in my car, being able to dance at parties, bike riding, and all the other fun things that make up everyday life. I didn’t know how easily Graves’ could take that away. It’s given me a different perspective on life, and I now appreciate the little things a lot more. I also appreciate the fact that my journey with Graves’ is really not bad when you compare it to the grand scheme of things. My deck of cards could have been a lot worse. While there is no cure for Graves’, there are many options to control it.
  • Don’t believe everything that you read – The Internet is a scary thing. It’s easy to come across information that simply isn’t true. You’re going to find many websites with inaccurate information, you’re going to come across the experiences of many others and my best advice is to take it all with a grain of salt (but don’t really take it with salt, because iodine is no bueno.) You’re probably not a doctor, so don’t go self diagnosing on the interwebs or think the sky is falling. Any questions you have, direct them to your doctor and NOT the Internet. Also keep in mind that everyone’s experience with Graves’ is different. Symptoms vary. Courses of treatment vary. So don’t think that someone else’s journey will end up being your destiny. Just chill and take it one day at at time.
  • Question everything – When I started this journey, I went to one doctor who just didn’t feel right. My gut was telling me to get a second opinion. I’m glad I did, because that other doctor could have put me on the wrong path. Not all endocrinologists specialize in thyroid diseases, especially Graves’, so it’s important you find a professional who is best suited to assist you. Ask your doctor how many patients with Graves’ they’ve treated, what their patient success rate is, find out about their specialties, ask about dietary changes, what are your chances of remission . . . in other words be your best advocate. Speak up and ask questions. Research your doctor and make sure there’s no nasty digital trail. Study Graves’ Disease so you can have a voice in your course of treatment. And if you’re not happy with your doctor, keep looking until you find the right one.

So. . .who’s ready to get this party started?

I am not a doctor and the content on this blog is not medical advice. This is simply my experience with Graves Disease, and all thoughts expressed on this blog are my opinions. Please consult a doctor if you think you have Graves Disease or prior to taking any action that may affect your outcome with Graves Disease. You should never delay seeking medical advice, disregard medical advice, or discontinue medical treatment because of information on this website.

4 thoughts on “Graves’ Disease. Now what?

  • I just came across your blog..THANK YOU! I was diagnosed a few months ago and am beginning the healing journey. Your blog is honest and very informative which I found quite comforting. Much of what I had read prior left me feeling constantly anxious about my future and living with Grave’s. Weight management is constantly on my mind. I am relieved to hear that it is manageable. The information regarding eye health is also appreciated. Thanks again for this glimpse into your life with Grave’s Disease. Please continue to give updates. Your blog has been the only one I have come across that has left me hopeful and positive and informed.
    Wishing you good luck and continued good health and happiness.

    • You’re very welcome, and you’re definitely inspiring me to continue writing! I’m makes me very happy to hear that my story has helped you out. I too, found it very disheartening when I started my journey. There was barely any information on Graves, and what I did come across was doom and gloom. That’s why I decided to start this blog. Don’t worry about your weight. You can manage it. You may need to figure out the best way that works for you. (In my last update, I had mentioned that I gained a bit of weight, but I’ve lost it all since my last post. If I can do it, so can you.) Don’t worry about your eyes. Worrying is not going to change anything. It’s going to stress you out and make you feel worse. Find strength in the fact that this too, shall pass. And when it’s done, you’re going to have so much more life experience, that any upcoming challenges you face are going to be a walk in the park compared to this. You’re going to be a better and stronger person. You got this!!!! I wish you the best of luck, and good health! 😀

  • Hello beautiful
    I am Spanglish too! Maca is from Peru I would like to know how good is the maca root power?
    I am pregnant and Io just realise I have graves .
    Probably I will have a miscarriage but nothing is yet
    I am in treatment . Having ptu every day (twice) to not affect the baby
    I am very scared and depressed
    Thanks for your blog making me not lonely on this

    • Hi Patty! I wish you the best with your Graves journey. Sugiero no tomar Maca si estas en estado. Mejor consultar lo con tu medico antes de tomar cualquier suplemento o vitamina. Vas a ver que todo va salir bien y que pronto te vas a mejorar. Mantengate fuerte y positiva, esto lo vas a sobrevivir. Tu no estas solo.

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