Tales from the Graves’ book:Thyroid patient stories

“I felt so alone and uninformed when I was diagnosed…I don’t want other people to feel that way.” – Ashli S., Graves’ sufferer

If there is any statement that sums up the purpose of “Tales from the Graves’”, this is it. So little is known publicly about this autoimmune disorder, and the disruption it can cause on the lives of everyday people. When it’s diagnosed, it’s a scary, amorphous unknown specter with an ominous name that implies going to the grave. There are made-for-TV movies for cancer and AIDS, and telethons for muscular dystrophy, so the public is well-aware of these inflictions – not so for autoimmune disorders.

According to Medscape in December 2013–a web resource for physicians and other health professionals–Graves’ Disease affects up to two percent of the female population, sometimes appears after childbirth, and has a female:male incidence of 7:1 to 8:1. It occurs most often in middle age (most commonly in the third to fifth decades of life), but is not uncommon in adolescents, during pregnancy, during menopause, or in people over age fifty. There is a marked family preponderance, which has led to speculation that there may be a genetic component. Graves’ currently affects approximately two hundred million people worldwide, three million in the United States alone. In other words, it’s very likely that a great number of people are impacted directly by this disorder (or related disorders, such as Hashimoto’s Disease, Thyroid Storm or the Thyroid Eye Disease), or through friends and family, that would be interested in this material.

Britney Robinson—co-author of this work, through suffering from Graves’ Disease for over 13 years now, has taken great pains to learn everything about this disorder in an effort to minimize its impact on her life and general well-being. In doing so, she joined a support group on Facebook for others to share their experiences–when she joined there were about fifty members. Within a year, that number has blossomed to over a thousand with more people asking to join daily. When she proposed compiling anecdotes into a book, over one hundred and twenty of these members jumped at the chance to share their stories in the hopes of telling others that they are not alone. Realizing the potential of this book to blossom into a huge project, Britney enlisted the aid of her husband, Ray Robinson. Ray is an experienced writer, having put together stories for multiple newspapers and blogs over his career.

This guide will begin with a basic description of Graves’ Disease itself–its origins, signs and symptoms, and diagnosis. Many of the contributors will give their own experiences in what first clued them or their doctors in. You will hear, straight from their own words, their advice on pursuing a diagnosis, finding a doctor that actually knows what Graves’ is (it’s more difficult than you would think!), and the tests they experienced to achieve the correct diagnosis. Special attention will be paid to treatment methods people have attempted (with varying degrees of success), how to stay positive in the midst of a complete life upheaval, and dealing with some of the more noticeable traits–such Thyroid Eye Disease (TED) that can occur in those suffering.

The truly moving draw of this material comes from reading the stories directly from people dealing with, suffering through, and overcoming this disorder. Many don’t mince words–since this is a harsh disease, you will get a real feel for the emotions they pour out. And never the same story twice! You will read REAL tales of lives turned upside down, friends lost and gained, frustration and elation, despair, fear, anxiety and jubilation.

“Tales from the Graves'” is an excellent guide for not only those suffering from thyroid diseases, but for their friends and family to gain understanding, and learn what they can do or say to help.

I am truly proud to have been privileged to hear so many stories from other thyroid patients, I hope I have done justice to their trust, and can help many others see a glimpse into our lives. Thank you to all of them and to my husband Ray Robinson for his help in compiling and writing this book.

Available for Pre-order from now until March 30, 2015, then available for purchase on Kindle platform. Get your copy here!

Be Your Own Advocate

I talk to a lot of people in my own thyroid support group and in several others where I am a member or Admin. We get several people in there a week in a panic because their doctor gave them incomplete information, or worse, told them something that scared them to death without taking the time to point them in the direction of information that would help them.

For instance, we had someone join the group recently. They were just told that they had thyroid disease. That was all their doctor had told them. They came to the group scared that they was going to die. “Am I going to die?” was literally the first question asked when joined. So we talked to them, found out where their thyroid levels were (slightly hypothyroid) and what treatment the doctor had prescribed for them (thyroid replacement medicine) and were able to give them more detailed information than what they were given. I asked if the doctor had taken the time to explain anything about the diagnosis, and was told they had not just the diagnosis and pretty much that was it, no questions answered, no further information. It took several of us a couple of hours to get this person calmed down. No one should have to leave their doctors office feeling that way.  I’ve seen this scenario happen all too often.

The second most common thing I see,  is a person will find out that that they have something wrong with them that their doctor never told them. Such as the person who went to a specialist who asked them, “So what is your regular doctor doing about your extremely low calcium levels?” While the person is sitting there in shock because their doctor never mentioned this to them. This leaves a person wondering why their doctor isn’t giving them the full information on their health? Shouldn’t a person have a right to know if something is affecting their health? What else isn’t the doctor revealing and why?

In this era of ten minute visits with doctors and specialists being overbooked, this sort of thing happens all too often. People come in seeking a doctor’s help to feel better, and they are given little information on what is wrong. Then if they even get a diagnosis, they have no idea how they are supposed to handle this limited information about their health. Without information, a person cannot make good decisions about their health. Without information, a person can, and will jump to the worst case scenarios. It would have taken the doctor maybe 5 extra minutes to sit down and give a basic tutorial of what a diagnosis means to a person which could make all the difference in how a person handles things. Thank goodness there are still doctors and other health care providers out there who will take the time to try to educate and comfort their patients while they are in the office,  and make sure their mental well being is taken care of, as well as their physical well being before BEFORE they walk out the door.

So what can a person do to avoid this scenario of not getting nearly enough information about their health to make any sort of rational judgement? Here are a few tips to keep in mind when next you go to your doctor, remember the doctor works for YOU, you do not work for them:

1. What tests do we need to run to confirm a diagnosis? What are the risks of these tests?
2. What is my diagnosis if you have one for me? Can you give me a definition of what that diagnosis means so that I can understand it?
3. What are the options available to me to treat this condition?
4. What is the medicine you are prescribing and what is it for? Are there any side effects?
5. Ask for a copy of any test results or labs to take with you. Explain this is a way for you to follow up  and keep up with your own health.
6. What if anything, do I need to do at home to take care of this? Are there any dietary changes that need to be made for instance?
7. How soon do we need to start treatment, or can I take some time to think about my options (for major treatment issues like surgery, RAI, etc.)
8. Do you have any literature you can give me about my condition, or do you have any books or websites that you recommend to help me understand?
9. What signs or symptoms should I watch out for that would signal my condition getting worse?

There is no need to be aggressive when dealing with your doctor. Let the doctor know you want to be a partner with them in your healthcare. For instance if you would like them to run more tests that they normally would not, ask them if they could please run them this time for your peace of mind and to rule things out. If you have a doctor that no matters what will not run the tests or give you the treatment you feel you need to be healthy, it’s perfectly ok to look around for another doctor who will work with you.

If you need a new doctor, feel free to check out this list at warriorbutterflies.com all health care providers on the list have been recommended by a thyroid patient who has been helped by that person. If you have a fantastic doctor that works well with you, please let us know at Warrior Butterflies so we can add them to the list of doctors.

You can see Britney on twitter @BttrflyBritney also