Many people visiting this site are newly-diagnosed patients, or parents of newly-diagnosed children. Many ask questions either through a direct email to me, or as a comment on the site. They are usually just getting started in their journey. Some don't know where to begin.
Over time a common theme has developed in the types of questions people ask. That's why I came up with a list of "Top 5 Tips for Newly-Diagnosed Graves' Disease Patients." Because I've typed these tips time and time again, I thought they would make for a helpful post on their own.
Tip #1: Surround yourself with the best medical care possible.
Most general practitioners don't have experience with Graves' Disease. Ask your doctor for a referral to a specialist. Not just any specialist, but one who has experience with Graves' Disease. For some of you, this might mean traveling outside of your hometown. I hear from people all the time who tell me they just want to talk to someone who's familiar with what they're going through. And not all endocrinologists have experience with Graves' Disease. Just ask when you make your appointment. I did.
Make a list of questions before your appointment, and don’t hesistate to ask them when you're visiting with your doctor. I was lucky in that every doctor I saw took the time to answer all of my questions, and concerns. Here's a great list of 31 questions to ask, courtesy of Mary Shomon.
If you’re not happy with your current medical care, and you have the means to switch, do so. Remember, on average, it takes over four doctors to properly diagnose an autoimmune disease.
Tip #2: Don’t feel pressured to make a hasty decision.
Carefully research your options, including the pros and cons of each one. Just because one treatment option isn’t right for one person doesn’t mean it’s wrong for you. Everyone is different. I highly recommend you talk with others on forums who can share their experiences given the path they chose. A good place to do this is on the forums pages at the Graves' Disease & Thyroid Foundation website. These are real stories, from real people, who can be a valuable resource to you.
Tip #3: Seek a second opinion if necessary.
I’m glad I did. In my case, I waited quite a while, but you don't have to. In fact, I wish I'd done it sooner. Sometimes it helps to have another point of view. Should you tell your current doctor? That's up to you. I did. Later, when I decided to have surgery, he made a recommendation for a surgeon. I already had a different surgeon in mind, whom I went with in the end. Now that I'm past the surgery, and have had my labs checked twice through my surgeon's health system, I've been released back to my original endocrinologist. I explained all of this to all of my doctors so everyone knew what was going on. I felt the transparency helped in the coordination of my care. Sometimes, the "burden" of coordinated communications falls on the patient. I just kept everyone informed since my surgeon, my endocrinologist and my primary care physician all work out of different health systems, and thus different hospitals.
Tip #4: The internet is an incredible resource, but use caution and good judgment.
You’ll find a lot of medical information available online. In addition to reading several books, I heavily researched Graves' Disease online. I found a lot of very useful information. I always made it a practice to discuss the information I read (from books and online) with my endocrinologist. By all means, be wary of people promising quick cures.
Tip #5: Be kind to yourself.
Many people write and tell me how difficult it is to live with an invisible illness. "You look fine" they're told. They have to explain otherwise. Ask for help when you need it. (I know, hard to do sometimes). Say 'no' when necessary. Above all else, be kind to yourself. You deserve it.
I hope these tips help you through your journey with Graves' Disease.
My hope for each and every one of you is a great outcome, and that you return to feeling like your old self, or better. If it can happen to me, it can happen to you, too. Don't lose heart.
I'd love to hear from you. Please feel free to share any helpful tips that have helped you along the way!
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