NMFIT Thyroid Health Series: Personal Stories Shared
It wasn't until I shared my thyroid surgery with others that I realized several people around me suffer from thyroid disease in some shape or form. This naturally made me feel less "alone" and relieved that I had others to discuss my diagnosis with other than my physician. One person that I was shocked to discover suffers from thyroid disease was my web designer (the best ever). Over the years Eimy Figueroa has not only helped to make my website beautiful but has also become a good friend! She shared the issues she faces when it comes to thyroid disease.
NMF: When did you discover you had a thyroid problem?
EF: I discovered it three years ago. I was feeling very tired all the time and my joints hurt whenever I woke up. My skin was super dry and since my mom has it, she suggested I get tested.
NMF: Are there are a lot of available resources in Puerto Rico when it comes to endocrinologists?
EF: Recourses are very slim. In fact, to be able to get an appointment with an Endocrinologist, any Endocrinologist, there's a 3 month wait. It's very counter intuitive when you're starting out because it's difficult to wait from that first appointment to get tested and then that second appointment where they tell you the diagnosis and treatment. Follow ups, as you can imagine, are also a pain.
NMF: What has been the most difficult part dealing with your diagnosis?
EF: The most difficult part has been the weight gain. My metabolism is at a stand still. Also, getting the proper recommendations. I found myself really frustrated with the recommendations that the doctor gave me. A pill and an all american diet. While I kept reading, doing research on my own, that there are certain ingredients or foods to avoid that disrupt the use of the pill. It's been a journey of trial and error. Trying the elimination diet in order to see what triggers the inflammation and then, trusting my body's signals to adjust.
I was touched by another personal story. After I launched the NMFIT Thyroid Health Series, I received a tremendous amount of responses ranging from friends of friends to people I have worked with. Amy Shey Jacobs the founder of Chandelier Events and Halo PR sent me an incredibly touching email following the launch of my series. Amy revealed that thyroid disease is something she has lived with and has affected her mother as well. Continue reading my interview with Amy to learn more about her personal story and the efforts she has made to help educate others!
NMF: How did you discover you had a thyroid health issue?
Amy Shey Jacobs (ASJ): I discovered my thyroid condition following my first pregnancy. I had endured a difficult pregnancy with complications: my son was born in an emergency c-section due to pre-eclampsia and low birthweight, 3lb. 10oz. at 36 weeks. In the months following, I experienced post-partum thyroiditis and in the process of tests to discover what might have been the source of my pregnancy complications, they discovered Hashimoto antibodies. I had never before experienced a thyroid abnormalty (that I knew of) but do come from a family lineage with an array of thyroid conditions from Hashimoto to Graves Disease to Thyroid Cancer. In fact, because my mother had been diagnosed in 1995 with Hashimoto and Papillary Thyroid Cancer, I was not only intimately knowledgeable about the thyroid--I had already been working with her on her foundation with Memorial Sloan Kettering Cancer Center for many years prior to my own thyroid health condition diagnosis. So, as fate would have it, I was better prepared for the diagnosis than most. To date, my Hashimoto autoimmune is stable--but I am checked regularly by my endocrinologist.
NMF: You have lived with your diagnosis for 10 years, in what ways has it changed your life over the years? What necessary lifestyle changes did you need to make?
ASJ: I have lived knowing that I have had Hashimoto for a decade now (my mother has survived Thyroid Cancer for 20 years post-diagnosis and is feeling great!). What I have found is that with ongoing check-ups, my health has remained good. However, about two years ago, after feeling some personal health effects that I (not necessarily my doctor) suspected were side effects of Hashimoto (thinning hair, adult acne/breakouts, fatigue, chronic abdominal bloat and discomfort, weight gain, and the like) I grew frustrated like many Hashimoto patients do. I happened to hear from someone who also had Hashimoto that there she had read about possible links to Celiac Sprue and that gluten sensitivity might be the clue. While I know this is not scientifically proven to date, I was willing to try anything. That was March 2013 and it has been a lifestyle change that has forever changed my personal health. I still maintain a gluten-free lifestyle which has provided me with relief from many of the symptoms I was experiencing--inflammation more than anything--and hence, I am going to stick with it! I find it is easy to maintain, allows me to have carbs that work for me (rice, quinoa, potatos, etc.), healthy and balanced with whole foods (non-processed), and delicious! I also find green tea and drinking coffee black provides me with relief. And juicing! Love a green juice. For anyone considering a dietary lifestyle change, at the Light of Life Foundation we strongly recommend that you consult your physician and a licensed nutritionist.
NMF: What has been the hardest part living with Hashimoto?
ASJ: The hardest part for me is that my thyroid function seems to go up and down at almost a whim--while I feel more healthy and stable than I have in years, I do feel that I lose and gain weight or become fatigued or anxious very sporadically (for me)...often, I hear that Hashimoto patients feel their quality of life issues are misunderstood when the "numbers" come back normal. I can certainly commiserate. There are days when I just don't feel or look like myself.
NMF: Tell me more about your foundation The Light of Life!
ASJ: The Light of Life Foundation for Thyroid Cancer (www.checkyourneck.com; @checkyourneck) is a 501(c)(3) non-profit organization, fosters awareness, provides education for thyroid cancer patients and funds research. The foundation was created in 1997 by my mother Joan Shey and the physicians who helped to save her life at Memorial Sloan Kettering, and has grown to become a leading voice in patient advocacy on national and international level. We fund awareness campaigns (which have featured Rod Stewart, Brooke Shields, Cindy Crawford and real patient stories), patient education programs, in-hospital support, medical fellowships and research grants and provide 24/7 online support to thyroid cancer patients around the world.
NMF: Where can thyroid patients get your iodine cook book?
ASJ: The Light of Life Foundation has put together a low-iodine cookbook to help give some suggestions on food preparation during the time patients must be on your special iodine free diet to prepare for treatment. We know how hard it is to come up with good tasting foods while on our restrictive diet, which is so important to our treatment. Most of these recipes were designed to give flavor, good nutrition and hopefully ideas of how one can eat well. Most of what is in this cookbook can be prepared ahead of time and frozen, which may make things easier for you. One suggestion we give is to prepare the chicken soup ahead of time, because it can be used to flavor most things during the food preparation.
For more information on The Light of Light Foundation click here.
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