Category Archive: community
Permanent link to this article: http://www.zenthyroid.com/2015/03/03/guest-post-making-chronic-illness-sarah-downing/
It is an honor to have Vanessa Steil guest post about her experience with thyroid cancer. Vanessa is the creator of the gorgeous website www.livinginsteil.com, where she blogs about fashion, food and health. I am grateful to Vanessa for choosing to share something so personal and reminding us how crucial it is to have our necks examined for lumps, no matter what our age is. A special thank you to Kelly Shadix for introducing me to Vanessa!
On April 2, 2013, I was diagnosed with thyroid cancer. According to the Thyroid Cancer Survivors’ Association and the American Cancer Society, approximately 60,220 people in the United States were diagnosed with thyroid cancer in 2013 (up 4.6% in 2014 to 62,980 people diagnosed). I never expected to be part of that statistic at age 26. One month earlier, during my annual visit to my gynecologist, the doctor performed a complete physical as part of the routine visit. During a neck exam, he felt a lump on my thyroid. That discovery caught me off-guard; I had no particular symptoms and had been healthy. Nonetheless, my doctor recommended that I have a blood test and a neck ultrasound; he also referred me to an endocrinologist.
I told myself the lump was nothing more than a benign nodule, and I tried to put the findings out of my mind. But I could not. The next day, I scheduled a neck ultrasound preceded by blood work. Something during the ultrasound troubled me, so I was not surprised a week later when I received a call from my gynecologist with the results. My blood work showed I had subclinical hypothyroidism; I had an under-active thyroid gland, which without medication would eventually cause me to feel tired and sluggish.
A week after receiving my blood results, I had a consultation with an endocrinologist. He told me that the nodule was more than 1.8 cm and would require a fine needle aspiration biopsy to rule out the suspicion of cancer. Six days later I had the nodule biopsied. The endocrinologist compassionately called me and requested that I come in so that he could deliver the news in person. Not only did the biopsy reveal my biggest fear, a diagnosis of papillary thyroid carcinoma, requiring a total thyroidectomy, but it forced me to come to terms with having to take Synthroid, a daily synthetic thyroid hormone replacement for the rest of my life. Before I left his office, the doctor advised me that I “should not make a research project out of the diagnosis” and recommended I find a surgeon and schedule a thyroidectomy.
A few days passed as I digested the news. I had good days where I felt positive about my future, and days that were more difficult to endure. I began taking a low dose of Synthroid to treat my hypothyroidism, and each pill was a constant reminder of my present and what would become my future. With all of this new information, I felt confused and overwhelmed. I knew I needed surgery, but should I get a second opinion? How do I find a good surgeon? Should I have a second biopsy? It was then that I began to understand the endocrinologist’s warning.
My first step in finding answers to my questions was the Internet. There I found one of my most invaluable resources, ThyCa: Thyroid Cancer Survivors’ Association, Inc. (www.thyca.org). ThyCa had a wealth of helpful information for newly diagnosed patients, along with questions to ask your surgeon, what to expect during and after surgery, and support groups.
As I began gathering names of surgeons, another question arose. Did I want to have surgery near home on Long Island, or did I want to see a doctor in New York City? After meeting with a surgeon on Long Island, I decided to get a second opinion from a doctor who came highly recommended at Weill Cornell Medical College in New York City. During my consultation he reviewed my results and told me something new. I had Hashimoto’s Thyroiditis, an inflammation of the thyroid gland that diminishes its ability to function properly. He recommended removing the entire thyroid and any surrounding lymph nodes to reduce the risk of recurrence. I felt confident with the surgeon and his proposed treatment and scheduled my surgery for May 3, 2013.
However, when I returned home and thought it over, I realized that I needed more time to process everything; I wasn’t ready to have surgery the following month. Again, the endocrinologist’s words haunted me. By this time I was torn, and allowed myself to indulge in the “what ifs.” What if the biopsy were wrong and it was nothing more serious than an under-active, enlarged thyroid? What if I underwent a thyroidectomy for nothing and had a scar on my neck as a permanent reminder? I needed more answers before I could feel certain that surgery was my only option. As a last resort, I sought the advice of a third surgeon, who was referred by my Ear, Nose, and Throat specialist. The surgeon, after reviewing my extensive test results, came to the same conclusion as the surgeons before him: I had thyroid cancer and needed a total thyroidectomy. He was sure of the results, and his confidence finally forced me to face the reality I had been so desperate to avoid.
On June 17, 2013, I underwent a total thyroidectomy with central neck dissection and lymph node removal. I was no longer someone with a diagnosis of thyroid cancer, but rather a cancer survivor. After I spent a night in the hospital and had symptoms no worse than a sore throat, I deemed my surgery a success and I was ready to start the next chapter — recovery.
I saw my surgeon for a post-operative appointment about a week later. The pathology results had come back. Of the six lymph nodes that were removed, one showed signs that the cancer had spread. I had done little reading about radioactive iodine as a cumulative follow-up procedure during my research phase, but I was sure that was going to be the next step. To my great surprise, my surgeon had a different plan. Since my most recent blood work indicated that my anti-thyroglobulin level was trending downwards, he felt comfortable in adopting a wait-and-see protocol. Should my levels plateau or increase, we would do a course of radioactive iodine. I left his office that day elated, and it marked the first time that I was able to think of something other than cancer.
It is now a year and a half after my surgery. In March 2014 I met with my surgeon, who requested another visit — but not until June 2015. I will continue to be under the care of an endocrinologist and have blood work done regularly to ensure that my Synthroid dose remains at an effective level. My scar is virtually undetectable now, but its remnants serve as an important reminder of how fragile life can be. I was blessed to have the support of family, good friends, and an amazing team of doctors at Weill Cornell. The thorough examination conducted by my gynecologist is what led to early detection and my diagnosis. To him, I am forever indebted.
If I could offer one piece of advice, no matter your age, it would be this: have your doctor perform a thyroid exam at your next appointment and learn how to do the exam properly yourself. I urge everyone to visit the Thyroid Cancer Survivors’ Association’s website where you can receive free information on thyroid cancer, neck exams, radioactive iodine treatment, and so much more.
Permanent link to this article: http://www.zenthyroid.com/2014/12/20/coming-grips-thyroid-cancer/
Our thyroid community is full of beautiful people, like Tina Mil. Tina writes the blog The Diary of a Menopausal Mama, where she shares her experiences with early menopause, her recent Hashimoto’s diagnosis and tales of her life. Maybe some pictures of her kids and adorable new granddaughter too. You can follow her on Twitter @Tina_Ladd_Mil. Tina has generously shared the story of her health journey here. She is an incredibly strong woman who has been though a great deal. I am grateful for Tina’s openness and honesty.
A special thanks to my dear friend Kelly Shadix, the author of Your Journey Is Right On Time. It was Kelly’s idea to ask Tina to share her story.
Take it away, Tina…
Hello everyone! My name is Tina Mil. I am a stay at home mom of 4 beautiful children, new grandmom and wife to an amazing man! I was recently diagnosed with Hashimotos after a very long road of medial problems, depression and surgeries. I am so very happy to share my story with you all.
My journey began 11 years ago. After my youngest son was born I was diagnosed with PCOS. Shortly after, I was diagnosed with endometreosis. My life from then on was filled with pain and misery. I had periods that lasted 17-19 days, with bleeding so bad I was unable to leave my house or get off the sofa because of the pain that came with it. My doctor prescribed almost every birth control pill on the market and none worked.
Then came the surgeries. My first was a cyst on my ovary that was described as “the size of a newborn baby’s head”. Needless to say the ovary had to go. Because of my age, my doctor wanted to prolong removing the remaining ovary for as long as we could. Understandable, but given the pain and bleeding I was dealing with, well, I was begging for a hysterectomy.
Over the next few years I received 2 separate rounds of Lupron, which put me in a chemically induced menopause. This of course helped while I took the drug, but a month later all my symptoms resumed. I also received 2 endometreial ablasions. One by one my reproductive organs were removed, leaving my ovary for last which finally came out in June of 2010.
My menopause symptoms didn’t start right away and I finally felt like me again! I even finally got a job outside the home. 8 months after my surgery I felt that familiar pain and instantly knew that I had another cyst. It turns out that a cyst was missed during surgery and grew to a very large size. It had to come out. This surgery proved to be very difficult because of all the scar tissue I had, and I lost a lot of blood.
I lost my new job because of the amount of time I had to take off and shortly after this last surgery I knew something was wrong. I was having major menopause symptoms but the fatigue I was feeling was like nothing I have ever gone through. I had major depression, mood swings, all my joints hurt, my hair was falling out and in the winter it was like I could never get warm. I had my gallbladder removed many years ago and now I had all of these weird stomach issues. Through it all I just dealt with it. I was miserable.
Then I went to my annual gynecologist appointment. I did the usual weight check and sat waiting for the usual unpleasant exam. The nurse took my blood pressure 3 times before sending my doctor in who took it 2 more times. She looked at me and said I have 2 options, go to the ER or go see my cardiologist. My pressure was at stroke level. I had minor blood pressure issues in the past but haven’t been to get a check up in some time. I opted for the cardiologist who took me right in. I was put on meds which didn’t work, my pressure just wouldn’t go down.
On a routine pressure check visit I saw a nurse practitioner. She sat me down and asked my whole medical history. She looked at me and asked if anyone has ever checked my thyroid, of course I said no. She ordered some blood tests and sent me to a pulmonologist (who then diagnosed me with sleep apnea) and said I’m not an endocrinologist but i’m betting your thyroid is out of whack. 2 weeks later I was diagnosed with Hashimoto’s disease.
Apparently, a trauma to the body, a virus, etc. can trigger thyroid disorders that may have otherwise gone undetected. I am currently on levothyroxine and will be getting my levels checked again soon. After reading so many of your posts and hearing so many of your stories I am now armed with important information, information that can help me on my road to feeling better. If my levels aren’t what they are supposed to be, and I have a feeling they aren’t because I don’ feel any better, I am requesting Armour. If I don’t get it I will be looking for another doctor.
Its hard to distinguish what is menopause and what is my Hashi’s. Its a daily struggle and most days my energy is at a zero. The way I look at it, I now know what the problem is, I know i’m not crazy. While I know that it may take some time, I know that one day I will feel normal. I will get there with the help of my amazing family and my saint of a husband. Through my blog I have met some really wonderful women who are going down the same road. We are traveling together and it makes the journey bearable. We lean on each other, cry with each other and enjoy the good days together.
If I could give one piece of advice it would be to listen to your body. You know it more than anyone, and if something doesn’t feel right chances are it isn’t right. Be your own best advocate and learn its OK to ask for help!
Thank you for letting me share my story and I wish each of you the best of luck on your own journey!
Permanent link to this article: http://www.zenthyroid.com/2014/10/04/diary-menopausal-mama-tina-mil/
I am so honored to introduce you to Kelly Shadix, thyroid warrior. Kelly is an integral part of our amazing thyroid community on Twitter, always supporting the rest of us with kindness and positivity. Kelly’s openness in relaying her experience is inspiring and I am grateful that she has shared her thyroid story with us. Follow Kelly on Twitter @ShadixKelly.
“Sometimes what you’re most afraid of doing is the very thing that will set you free”
My name is Kelly Shadix. I’m 42, will be 43 in March. A mother of two and married almost 20 years.
This is my Thyroid Story:
I was 37 years old when I first noticed a change in my body. At first I thought it was new stress from leaving my job, which by the way I was very unhappy with for a long time. It wasn’t till later that I realized Hashimoto’s is brought on by stress. My body seemed to start breaking down, muscle weakness, extreme fatigue, hair loss, mood swings, anxiety, weight gain, and last but not least and this is a big one – zero focus! My mind is all over the place like the quote “My brain has too many tabs open”. Yep, that’s me all the time!
It wasn’t until a dry (constant) cough that started and never went away did I start to realize something was wrong. At first of course I tried to play it down to friends & family “it’s no big deal-just a cough it will go away”… well it didn’t. I became so self-conscious of my cough when I was out running errands, son’s baseball games, at the movies, shopping. I was constantly popping honey cough drops everywhere I went to sooth my throat.
I remember one day talking to my mom over the phone and she said “Kelly, why do you keep coughing?” And of course I said many excuses to her, its nothing, no big deal! I will go see a doctor soon. I said this just to pacify her, so she wouldn’t worry. But I did worry! It’s funny how talking to my mom made me realize my cough could be something more!? Moms always seem to know when something is not right.
I began so many cough/combination and over-the-counter allergy medications and doctor visits, only to say, “This is not working either” over two years. It was starting to wear me down. Finally, my doctor recommended for me to see an allergist to get tested. All came back negative for indoor/outdoor allergies but we tried a new medication(s) just in case something might work. Well, it didn’t…I can’t even remember all the different trial-runs of medications I went through; it’s all a blur to me now.
I got a referral to see an ENT. Okay, so this is where my Thyroid Journey truly begins. This moment will stay with me for as long as I live. My ENT doctor, who I call Dr. B, sat me down in his office to begin an exam of my neck. He barely touched my throat and stopped to press in, as if he found what he was looking for, then stood back and calmly said, “You have a nodule”. I remember just sitting there not realizing what his words meant. A nodule? What is a nodule and why is it in my throat? Dr. B was so patient with me, explained that we can have it biopsied and not to worry, that its chances of being cancerous were very slim. He went on to explain percentages and biopsy procedures, but it all went over my head. My mind was stuck on the word “cancer”. What? How can this be happening to me?
After leaving the doctor’s office my mind shifted from worry to detective. I guess this is when I became my own advocate, although it never occurred to me at the time that was what I was doing. I called my mom ASAP! When I told her about my nodule, she said she had a nodule for as long as she could remember and doctors just told her to get it checked every so often to make sure it wasn’t growing. I was stunned! She then told me about my great-grandmother dying from thyroid cancer. Apparently, before she died her goiter or nodule got so big that it was hard for her to lay down flat without feeling like she was choking and couldn’t breathe.
At my next scheduled appointment with Dr. B I told him my family history and that I wanted to skip the biopsy and go straight to surgery! I wanted the nodule removed. Surprisingly he agreed to my request to have the nodule removed and get it tested during surgery. Dr. B also felt the nodule was pressing against my vocal cords and that could be causing my cough. I wanted it done immediately! The cough was not my worries anymore, if anything it was my body trying to tell me something was wrong! In August of 2011, I had a partial-thyroidectomy. The good news was the nodule was benign. The bad news was they found another nodule on the right side which was too small to remove. In recovery, I felt like I was hit by train. Thankfully, one of my good friends is a nurse who helped me with the bandages and told me what to what to expect with my recovery.
During this time, my twin-sister Penny went to get her thyroid checked. She also had nodules and had a biopsy done. The biopsy came back inconclusive. Penny decides to have a total-thyroidectomy and they find capillary cancer. The doctors said she was extremely lucky, because the cancer spread to her lymph nodes, which they removed nine of. Following her surgery she had to do radiation. As of today she is “cancer free” and doing well, but is having a hard time adjusting without her thyroid.
Six months following my partial-thyroidectomy surgery, I had a follow-up with Dr. B and found out that the nodule on my right side was growing. I requested Penny’s medical records for my doctor to review. We discussed my options to continue monitoring my nodule or go ahead with a total-thyroidectomy. I opted for a total-thyroidectomy. Benign or NOT, I wanted to be pro-active and not take any chances! My intuition told me to get it done! This was my choice. My doctor thankfully agreed with me. Aside from experiencing low-calcium levels right after surgery, all went well. No cancer! My sister, mom and I agreed that “my cough” and persistent follow-ups potentially saved my sister’s life. Listening to your body is so important! Little things could turn out to be big things!
I don’t think I could have ever imagined how hard I would struggle without my thyroid. I thought after my surgery the worst would be over, little did I realize the hardest struggle of my life had just begun. Diagnosed with Hashimoto’s and hypothyroid. All I knew was to take my thyroid meds every day at the same time and get blood work done every three months. Four months after my surgery and taking Synthroid, I knew it was not working for me. Brain-fog, skin irritation, irritable, no energy! It was just the beginning. I thought I was losing my mind, and didn’t know what was wrong with me. I finally went to my doctor and my TSH was 7.11 – it was high! No wonder I felt like a ZOMBIE. I requested to switch my Synthroid to Armour, but my doctor would not do it. I knew Synthroid was not the right medication for me.
So, during this time I continued to get worse and gain weight no matter how much I exercised or ate. I even had a trainer work with me. I wasn’t aware at the time how important gluten-free was, or adrenal fatigue. I became a different person seemingly overnight! I knew if I was going to get better I had to accept where I was at that moment and move forward. I let myself get stuck and depressed. I had to start healing myself from the inside before I could even think about my hair falling out, weight gain, mood swings, brain fog etc. Changing my attitude was important. I got lost in the anger and not realizing what was happening to my body. Also, during this time, the stress of my health put a strain on my family and relationships.
I knew to get healthy I had to find answers…
I began to search the web. I came across so many great thyroid advocates on Facebook. But the one that stood out and gave me hope was Dana, a.k.a. Hypothyroid Mom. I read Dana’s blog and I literally felt compelled to contact her immediately! I had no idea what to say at that time, except thank you. I know that seems crazy, but her words touched me, and I knew from that day on it was going to be okay! Getting off Synthroid was my first priority. I did a year on Tirosint/Cytomel and I was JUST okay for a while. After three doctors, I finally found one who had no problem putting me on Armour. I began to feel better almost immediately. I feel so bad that so many women are taking Synthroid only, or “T4 Hell” I like to call it. I’m still a work in progress. I plan to get my hormones checked and a saliva test for adrenal fatigue. Weight is my #1 issue that I know will always be a challenge for me. It is going to take time and patience. I realized that many things will not be the way they used to be and I’m okay with that now.
My hope by telling my story is that it will give someone hope to know that you can overcome this disease. It will always be day-to-day with what your body can do. Most days, I feel like I can do it all, some days just enough and there are days I don’t want to get out of bed. What worked for me might not work for you. And don’t give up if you think something is wrong! The hardest part for me was to get the ball rolling and find a doctor who will listen. I’m thankful for Dr. B and for all that he has done for me.
And last but not least, Mikelle. I am so thankful to have found you on Twitter and what a great friend and inspiration you are to me. I was truly honored to be your first guest post. Thank you for getting me started with meditation. You are such a beautiful person and so helpful on easing my fears about writing my story. I love following you on Twitter and on your blog www.zenthyroid.com. I can relate too many of your struggles on thyroid issues. I love your perspective and how you overcome by having such a positive outlook on life.
Has molded you for the greater good it was exactly what it needed to be. Don’t think you’ve lost time. It took each and every situation you have encountered to bring you to the now
IS RIGHT ON TIME” -ASHA TYSON
Permanent link to this article: http://www.zenthyroid.com/2014/02/25/journey-right-time/
I am very excited to share with you a revolution disguised as a website called ThryoidChange. ThyroidChange has a mission to unite patients, doctors, bloggers, organizations, and individuals globally to share resources and to improve thyroid disease diagnosis and treatment. What a beautiful goal! They have already compiled an extensive list of people in the thyroid health community, as well as links to websites and forums in many countries. The ThyroidChange site is a wealth of information and a great place to meet others in the thyroid world.
ThyroidChange has a petition to sign which calls for better care from endocrinologists. Specifically, the petition asks for a more thorough testing procedure to determine thyroid disease, a broader choice of treatments and for doctors to stay up-to-date on current research. At the time of this writing the petition already has over 4200 signatures. Click here to read the complete petition and sign to support this important cause.
A big thank you to Michelle Bickford and Denise Rodriguez for bringing together so many people with the goal of optimal care for thyroid patients.
If YOU would like to join this “worldwide thyroid support network” (LOVE that!), email email@example.com with the subject line MEMBER.
Permanent link to this article: http://www.zenthyroid.com/2012/08/01/thyroidchange/