Thirtysomething mommy of three. Marketing communications professional. Pop culture addict. Lover of outdoor concerts and all things Coldplay. Runner. Karaoke specialist. Thyroid cancer survivor.
MY STORY (Updated January 2013)
All thyroid cancer survivors become fighters during their journey. But my thyroid cancer story starts with a long fight to be diagnosed. I have always been a healthy, active person. I never even get the flu. If I put on a few pounds, I could easily sweat it off at the gym. In February 2010, that all changed. I had just finished nursing my six month old daughter, and I was all excited to finally lose the baby weight and get back into my skinny clothes. But instead, I started putting on weight. I was tired, my hair was falling out, my legs hurt all the time…I just wasn’t myself. My nanny told me about her postpartum thyroid issues, and I made a doctor’s appointment to check it out.
Over the next 16 months, I saw five different doctors. I was diagnosed with depression, vitamin D deficiency, vitamin B-12 deficiency, weight-obsession, body image issues, chronic fatigue syndrome, sleep apnea, and outright hypochondria. Each time, I pressed the issue of my enlarged thyroid, and each time, I was brushed off. Sure, I had thyroid nodules, but so does 25% of the United States. I worked as a pharmaceutical sales representative for seven years, so I am an excellent researcher and can interpret clinical data with one hand tied behind my back. I refused to accept that I was just crazy. All of my symptoms lined up perfectly to hypothyroidism. But doctors would not listen, because my TSH was “normal.”
Finally, I saw a holistic doctor. She recommended I take an iodine supplement, as well as a supplement that contained a small amount of porcine thyroid gland powder. I felt better almost instantly. I lost 11 pounds effortlessly. I felt normal.
In May 2011, I had my regular bloodwork with my primary care doctor. My iodine and thyroid supplements skewed the bloodwork into hyperthyroidism. Finally, my doctor believed I had a thyroid problem, but she was very wrong about what the problem was. Nonetheless, the skewed bloodwork prompted a radioactive iodine uptake scan, which I had been begging for all along. The scan showed a cold nodule in my lower right lobe…9 mm in size. A week later, I had a fine-needle aspiration biopsy. And it HURT. BAD.
A few days later, I received my diagnosis, along with this condescending gem: “You have papillary thyroid cancer. If you had to get cancer, this is the best one to get.” I’ve heard that one at least 50 times since. My doctor recommended a general surgeon for my thyroidectomy, and I wouldn’t have a follow-up to get on replacement medication for 6 weeks. Since I had spent 1 ½ years researching, I knew I had other options. As soon as I got off the phone, I got an appointment with an endocrine specialty surgeon at the best university hospital in my state, and I began actively searching for a good endocrinologist within that same hospital system to ensure seamless treatment.
My total thyroidectomy was virtually painless. I was home within 24 hours, and only had a small piece of tape covering my 2 inch incision. My cancer was contained to the 9 mm nodule, so my endocrinologist concurred with the latest American Association of Clinical Endocrinologists Guidelines that I could forego radiation therapy. I fought and waited a full year before I had my full body scan to ensure that I could get Thyrogen injections as opposed to getting off of my thyroid medication and dealing with the awful hypothyroid symptoms. My scan showed only healthy remaining tissue, so I continue to follow up with bloodwork and ultrasounds every year, monitoring my Tg (tumor blood marker) levels.
Surgery eliminated my thyroid cancer, but for 15 months, I continued to fight to achieve “normal” on replacement thyroid medication. I tried Synthroid, Synthroid + Cytomel, Armour Thyroid and NatureThroid, all on various doses. The medication changes left me 20 pounds heavier, and I felt more hypothyroid than ever. After stabilizing on a 125 mcg Synthroid/5 mcg Cytomel combination, and doing the HCG Diet, I finally feel like my old self. I will not give up. I will continue my fight for optimal treatment. And I will continue to work hard to increase thyroid cancer awareness. No cancer is the “best cancer.” But I believe I can still live my “best life.”
Thyroidless 
I went through a very similar experience here in Australia…thanku for sharing …I would like to chat to u about it all.. Lisa. 51. Mother of two boys and a great husband who are bewildered by all I have endured but proud I carry onwards and upwards. Like swimming upstream
Thank you for writing and sharing your “journey”. Mine is identical to yours!
I hate the fat cancer!!
Thank you Sarah for sharing and raising awareness. I went through melanoma (skin cancer) and tomorrow I will have surgery on the right side of my thyroid, I also have papillary carcinoma. Im trying to stay positive through this.
My doctors aren’t doing anything for me. They’re saying there’s no way I have thyroid cancer but I’ve been struggling for the past 3 years with no answer. My doctor told me I’m overweight because I’m lazy. I’m 17, going to be 18 in a few months, I’m in my senior year of high school, I have so much ahead of me but I can’t enjoy anything right now because I feel too tired to do anything. Apparently I’m “making it all up” and it’s “all in my head”. They did a thyroid panel and told me my thyroid levels were high if anything, but none of my symptoms align. They did an ultrasound of my thyroid and told me there were 4 noids but “they’re nothing to worry about”. Nobody listens to me because I’m too young to be having thyroid problems. My lymph node has been swollen for 3 years, but they want to leave it alone since it’s “not bothering anything”. I just want somebody to hear me out so I can enjoy the youth that I have while I still have it.
Hey Sarah- can I email you? I am a papillary thyroid cancer survivor and just gave birth to my 2nd child. I have some questions about your experience
Sure! Sarahyoung33@gmail.com
Sarah,
Your medicine/doctor jumping journey sounds so much like mine. TT in 2009 and still feel like crap. I’ve been on everything; synthroid, armour, tirosint, synthroid + cytomel and now Nature Throid. I have insomnia, an annoying eye twitch and anxiety. I’m ready to surrender as you say. My current doctor is great but way too determined to make ndt work for me. He wants me to take beta blockers for the ndt side effects. I’m also taking all kinds of herbs to help my adrenals deal with the ndt. Like you, I felt the “best” or the best alternative to my “best” on 75 mcg of Synthroid and 5 mcg of Cytomel. How are you feeling these days? Is that combo still working for you?
Hello Catrina,
I am sorry you still feel poorly. Next month marks 6 years post-thyroidectomy, and I FINALLY feel back to normal. I’ve been on 125 Synthroid/5 Cytomel for 3 years. The only symptom I still struggle with is an extremely slow metabolism and inability to lose weight. I stopped gaining, but I can’t lose. I found that eating a higher protein diet (75g+ of protein a day) helps with hair loss. A supplement cocktail of Vitamin D, Ferritin, B6, Selenium and Zinc on top of a multivitamin has helped me recover my energy and improve my skin. And changing my exercise regimen to weightlifting vs. cardio helped me feel stronger and less anxious. It’s a journey…my best to you on yours!
Thank you for your reply and I’m so glad you are feeling well! I take the same supplements and am looking forward to “surrendering” myself. It’s actually a freeing feeling. Thank you for sharing your story; it’s helped me immensely. Being thyroidless is so difficult; no one can understand what we go through on a daily basis unless you’ve been through it yourself. Many blessings to you and your family!
Hi! Now that you went through HGC diet. Would you remcommwnd it for someone who is eerily similar to you in your thyroid journey? What happened as a result? Do you fee it helped or harmed you?
I do recommend it – I’ve done it 3 times and I only ever gain the weight back when I have TSH fluctuations. Worth a shot if you’ve struggled like I have!
Hello Sarah. Quick question: are you still taking the 5mcg of Cytomel along with the Synthroid and do you take it all at once or split the dose? Are you still feeling well?
I’m going to try to take my Synthroid at bedtime and my T3 in the morning to see if it helps my sleep issues. I’m currently on a compounded time Release T3 but am still not feeling well. I may try a one time dose of Cytomel again. Just wondering what has worked for you in terms of dosing timing.
Hi! Yes I still take the 5 mcg Cytomel. My energy level is great…metabolism still tough.
Do you take the Cytomel all at once or in 2 doses?
All at once with my Synthroid – first thing in the morning. And then I don’t eat or have coffee for at least an hour.