[Graves’ Lessons] Advice for a New Graves’ Disease Patient from Someone in Remission

Per my doctor, my Graves’ disease is in remission. I’ve know this for a week or two and honestly it feels a little odd to write it here. From diagnosis through meds to “remission,” it’s been a journey of about 18 months. How long will it last? Well, that depends upon a lot of factors–including how much stress I experience. If I slip out of remission too early, then it’s radiation for me.

The longer I stay in remission, the better.

Because I’ve been vocal about my experience, many friends have connected me to other friends who are newly diagnosed. I’ve been meaning to put together a post on advice for new GD patients but have been so busy with eldercare, homeschooling, writing, and traveling that I haven’t set down to do it.

And then this morning came a question on the Surviving Graves Disease page on Facebook: “What positive advice would you give someone just diagnosed with Graves Disease?”

Here’s my off-the-cuff answer, in a shareable graphic. I hope it helps someone because this comes from the heart and from experience. (The text in the graphic is reproduced in the first comment on this post.)

Advice for a New Graves' Disease Patient from Someone in Remission

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5 thoughts on “[Graves’ Lessons] Advice for a New Graves’ Disease Patient from Someone in Remission

  1. Here’s the text: “Look beyond just identifying the Graves thyroid dysfunction. Seek out a therapist or other mental health care professional to “walk” with you on this journey, someone who will support you emotionally and help you manage “stinking thinking” that can come with the disease AND the stress of managing it. Get a full physical and, if you are a female, get ALL of your hormones checked as GD can impact your reproductive endocrine system. Men and women might want to be tested for diabetes. Get your eyes checked as soon as you get your diagnosis and make sure you understand how RAI can impact TED. If you have any physical pain in your hips or shoulders, get an eval from a physical therapist. Hormone changes can affect your muscles and in turn your movement so stay on top of that. Consider going on a whole foods diet. Get checked for celiac disease and consider going gluten free to see if it has an impact on how you feel. Most importantly take your time. And if your doctor rushes you, get a second opinion. If he or she balks at that request, then boot them from your team. Because that’s what you really need–a team of medical and mental healthcare professionals who work with you not against your goals.”

  2. Stinking thinking is one that I stumble across more and more. I have to remind myself not to be vocal for a passing frustration. It’s so easy to hate things for no reason and hurtful to others if you voice it. I’m doing my best to keep my stinking thinking to myself, but it eventually passes, no damage done.

    1. Oh, it is the worst. I mean, the grim reality is that 100 years ago, Graves’ patients either went insane or died. And I’ve read somewhere that even today there’s a significant number of hyperthyroid patients in mental institutions. But we’re just supposed to “take the medicine” and think it’ll be okay. There is very little support or information on the impact on the brain yet clearly it DOES have an impact.

      Internalizing the stinking thinking and keeping quiet is one path, but I wonder about the long-term impact of doing that on one’s body. Graves’ is very much a stress-driven illness, so might that behavior–if engaged in too frequently–create more stress? IDK.

      1. Yes, it’s good to avoid stressful situations if possible. I’m at the point in my life that I avoid drama, especially people who crave drama. Make life as easy and pleasurable as possible.

        I’m constantly apologising to my husband but he knows that I don’t mean anything when I’m grumpy at him. I guess I’m very lucky in that sense.

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