Tips for Someone Just Getting Diagnosed

Once I started becoming very vocal about having Graves’ disease, and writing about my experience on social media, I started getting more messages asking me questions and talking about what they were going through or what their family member was going through. A lot of the messages evoked feelings of sadness and being scared about what was next. It’s the unknown that’s always so scary, isn’t it?

I always try to be completely honest with everyone and let them know exactly what I went through as well as the steps I took. It got me thinking about tips that I would give someone who is just getting diagnosed with Graves' disease and thyroid eye disease (TED). It’s also worth noting that everyone is different and if one thing worked for me it doesn’t always mean it will work for someone else. Every single person is different.

Tips for someone getting diagnosed with thyroid eye disease (TED)

Now, these tips are purely my opinion and things I have done to make this experience a little easier. You, by no means, have to follow them but doing these things helped me!

Get information from a primary care doctor

What I would do first is meet with your primary doctor, if you have one, to get more information. There is so much out there on the internet, but I’ve learned that sitting with an actual doctor where you can have an open and honest conversation will go a lot further than googling it and having your mind spin with all the information being thrown at you. I remember if I looked something up on the internet, I would be overwhelmed with all the information that came up and it would just make everything worse. You should get the correct information from a doctor face to face, if possible.

Find a TED specialist

From there, I had to find a doctor who specializes in Graves' disease. An endocrinologist. I’ve found that going to a doctor who knows so much about the specific disease has helped me a ton. I feel like I always know what’s going on because she has always been great at explaining and she’s also been great with me asking a million questions. I'm a very curious person by nature and also have anxiety, so asking questions a lot is something I tend to do. It has helped calm me down on many occasions, to have a doctor so knowledgeable in thyroid disease.

My endocrinologist then suggested that I see an eye doctor that specialized in TED, which I also did. Again, having a doctor who specializes in what you are going through is really helpful.

Be informed and ask questions

Being informed and having open and honest conversations with doctors has been something that has kept me relatively calm. So if you can be as informed as possible going forward, that would be my best advice for anyone going through Graves’ and thyroid eye disease. I rely a lot on my doctors, so if you are able to find a doctor you can trust, I think it can really help the whole process.

Editor's Note: This article is part 1 of a 2 part series. Read part 2 here.