Graves Eye Disease and Hyperthyroid

Top 5 Tips for Newly-Diagnosed Graves' Disease Patients

2013-03-18T14:23:44-04:00

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!

A look at my scar, 11 weeks post thyroidectomy surgery

2013-03-05T20:45:44-05:00

A few of you have emailed me asking for an updated photo of my scar. Here it is! Just 11 weeks after surgery.

I'm caring for it by massaging the area a couple of times each day. I'm also putting lotion and scar cream on it morning and night.

The itching I experienced early on has subsided. Now I don't pay any attention to it. Turns out, no one else does either!

News, news, news!

2013-02-27T23:23:46-05:00

You've all heard the saying "Have I got news for you!" Well tonight's post is a triple treat, and then some.

Since you've arrived on my Graves' Disease blog, let's start with the medical update. All good news.

First, I'm feeling great. Better than ever. Lots of energy. Frankly, I wish I'd had the thyroidectomy surgery much, much earlier.

Second, my scar looks exactly the same as it did in the last photo I published. No new ones tonight. It's itchy. Still. But that's ok. Healing nicely. My voice is ever-so-slightly hoarse but strong. And am I using it!

Third, I had my labs checked two weeks ago. My dose of 150mcg of Synthroid was too high, I'm down to 125mcg. I think that's the magic number. We'll see in about six weeks.

Fourth, let's move on to my eyes. My eye specialist at the Kellogg Eye Center at The University of Michigan told me yesterday he thinks my "active" phase of Graves Eye Disease is coming to and end. Wouldn't that be something? Elsewhere on 'eyesee' I talked about the active phase of Graves' Disease typically lasting 30 months. For me, it's been about 90. Yep, over 7 years. My eyes are as symmetric as they've ever been. There has been substantial improvement in the surface of my eye--hardly any corneal abrasion these days. Warm compresses and my cool new moisture chamber eyewear have really helped. Best of all, the "temporal flare," which is when the outer, upper eyelid is pulled up, is gone. Normal! Symmetry. It's such a beautiful word. I have no pain in my eyes. It's unbelievable. Lastly, my eyes have receded back to their normal range, about 21 and 22mm as measured. Mind you, they are still moving, but he said things have never looked (ahem) better.

Fifth, are you ready for this one? I'm transitioning in the workplace having taken a buyout from my employer. I have so many good memories, and I've met so many wonderful people along the way. Some became my dearest friends. Wish me luck. I'm in the very early stages of working through what I want to do next. I'm full of excitement and optimism.

There you have it. Lots of news, all wrapped in one post. I'm been just a little busy so you got it all at once.

I have so much to be thankful for. I'm one lucky girl.

January is Thyroid Awareness Month. Listen to Stacey Thureen as she discusses her personal experience with thyroid disease

2013-01-15T21:50:26-05:00

As you know, January is Thyroid Awareness Month. Today I'm posting a link to a great radio broadcast that features freelance writer and Thyroid patient advocate Stacey Thureen. Listen here as Stacey shares her experience and talks about thyroid disease in general. on eFitRadio blog talk radio.

Be your own advocate, listen to your body, and ask questions. Good advice from Stacey.

You can follow Stacey in a variety of places, including: www.StaceyThureen.com, on Twitter at @StaceyThureen, and at www.autoimmunemom.com (where she is a contributing writer).

What happens when you no longer have a thyroid? Here's a great summary by Mary Shomon.

2013-01-12T11:55:31-05:00

In the months leading up to my thyroid surgery and the few short weeks since, I've needed to learn a lot about life without a thyroid gland. I'm early in my education, and have a lot more to learn. That said, this morning on Twitter, Author Mary Shomon posted a link to an article she had written for About.com entitled "When You Have No Thyroid." Written in 2003, it's every bit as relevant today. It's a short, 2-page read. I encourage you to check it out. Just click the quoted text two sentences back ;)

Follow Mary on Twitter at @ThyroidMary