The Silent Disease

Thyroid Cancer: The Silent Disease

9 weeks after a full thyroidectomy

(image via Jessie Lee Photography)

Written by Jessie L O’Donnell, Thyroid Cancer Thriver & Owner of  Jessie Lee Photography

Do you know who Hakaru Hashimoto is? Of course you don’t. Do you know all the functions of your thyroid? More than likely not. Have you ever even thought of your thyroid health? Probably never.

Two years ago at 29 years old, during a routine visit to the gynecologist, my life changed forever. My doctor decided to feel my thyroid and thought she felt a nodule. She passed it off as something that was ‘no biggie’ but suggested that I find an endocrinologist to have it checked. What the hell is a thyroid nodule? They are growths that appear within the thyroid gland. Why? Well, no one really seems to have the answers. They just do.

That one little ‘no biggie’ turned my life around and upside down in a short amount of time.

My endocrinologist ordered an ultrasound and blood work to see what was going on. We discovered that I had three nodules on the right thyroid lobe and an autoimmune disorder called Hashimoto’s Thyroiditis where the immune system attacks the thyroid causing the thyroid to become inflamed, essentially forming a goiter. Ugh…a goiter. I’m going to be honest. The word goiter freaks me out. I remember being a child and seeing women with very large goiters and not understanding why their necks looked like that and feeling scared because no one explained to me what it actually was. Now here I was, sitting on a doctor’s table being told that is exactly what I have going on. GREAT. SUPER. What now?

Well, Ms O’Donnell, your blood work is normal and all within normal range. And the more nodules the better. If there is only one singled out nodule that usually means cancer.

Okay…bring on the nodules then.

Every 6 months I would receive an ultrasound and have my blood work done. The nodules were slowly growing with every ultrasound but my blood work was normal and my doctors didn’t seem to be alarmed so I tried to not be as well. I started to suffer from mood swings, sleeplessness, depression and started to have major problems with my cycle. My next appointment I decided to inquire about it. That is when my doctor seemed to become alarmed. After many tests and questions, I was then diagnosed with PCOS (Poly Cystic Ovarian Syndrome). She also thought that I may be insulin intolerant adding to the causes of PCOS. Those tests were also positive. I was put on Metformin, a Type 2 diabetic drug to help suppress glucose that I need to be on for the rest of time especially if I would like to have children. After being on Metformin every day, twice a day, things in that department seemed to be figured out.

But what about the discomfort in the right side of my neck? Why was I waking up some mornings with a voice of a woman who smoked for the past 20 years? Come to find out, my goiter was pressing on my vocal nerve. I would have one sided conversations with my thyroid…why are you doing this to me? What caused you to turn into this? Please stop hurting me. Why does it seem that I am the only one at my age suffering from this?

I went in for my ultrasound May 2013. The technicians seemed to be alarmed and tried acting like they were not until I demanded what their wide-eyed expression was for. They showed me the comparison of my ultrasound 6 months prior to the present moment. I didn’t even know what I was looking at but my jaw dropped. Something was very wrong and not one person in the room could tell me what the problem was and I had to wait a week to find out…ugh.

The ultrasound showed that the nodules grew much faster than they had in the months before but it also showed that the Hashimoto’s was getting pretty severe. But my blood levels were still in normal range. If they were in normal range then why did I feel like ‘hulking out’ on people for no reason or why did I want to crawl into a corner for weeks in the dark? During all of this medical confusion, I was dealing with serious stuff in other areas of my personal life. My boyfriend of two years who lived with me dumped me leaving me with rent I couldn’t afford on my own, my father receiving emergency open heart surgery, my Auntie passing away suddenly, I had to move for the what seemed like the 100th time and while doing so scrape up whatever positive energy I had left to celebrate 100 milestones of the people close to me whether being engagements, babies or weddings. The only thing that helped me not crack and being put into a crazy house was yoga. Not just any yoga; hot fusion yoga. The only time that I didn’t have to think about anything in life for a glorious sweaty hot 75 minutes but me and my well being which I realized needed to be my number one priority. My yoga practice flowed into my daily life helping me deal with negative thoughts and negative events.

A biopsy was ordered to have my nodules tested which came back as benign. A voice in my head kept saying that something was wrong. I was traveling up to Boston in June and got an appointment with the best thyroid surgeon, Dr Randall Gaz at Massachusetts General Hospital. After examining all my reports and a physical, he suggested on calling him when I could not handle the pain anymore. Because the biopsy report came back as benign, my situation was not considered an emergency. I went back to south Florida with the voice constantly repeating itself in my head. It was no joke. I would be having conversations with people and this voice kept interrupting my thoughts. I couldn’t take it anymore and the pain I was dealing with every single day. I called Dr Gaz and scheduled surgery for December 2013.

The plan was the removal of my right thyroid lobe since that was the only problem area. He was very confident that the left lobe would take over the full function of the thyroid. I get to keep part of my thyroid?! Yippee!

December 9th, 2013 at 5:30 am, I walked through the doors at Mass Eye and Ear Infirmary. I was prepped for surgery and waited with my parents by my side. We said our goodbyes and was told I would see them in about 2.5 hours.

I woke up in recovery very confused. The clock that I could barely see said 5pm. I became even more confused, especially when I started to heave and vomit up stomach bile. My body did not handle coming out of anesthesia well. To vomit right after having your neck cut open is a pain I can’t describe to anyone. My surgery took 9.5 hours. The thyroiditis got so bad that it was sticking to everything and would not let go of my vocal nerves. Dr. Gaz was determined to save my voice and he did.

The next morning Dr Gaz came to take my stitches out to then put butterfly bandages on my incision so the scar would be minimal. With a calm and concerning voice he said to me “I had to take out the thyroid and give you a full thyroidectomy.” My eyebrows came together and bunched up since I couldn’t really speak. “You had cancer and it was pretty bad. I had the pathologist test the right lobe before we closed you up and when that tested positive, I decided to take out the left lobe as a precaution. We won’t know the results with that until a week from now. So that means you developed a large amount of cancer within 5-6 months. I want you to see Dr Ross downstairs for treatment to get rid of any cancer cells that are left that we cannot see. Ok?” I shook my head as if I understood.

What the f*ck was happening to me? The pathology report on the left lobe came back positive. I had cancer all over my entire thyroid. I knew something was very wrong and thank god I listened to that annoying voice inside my head. Now what? I’ll tell you what….the most agonizing weeks were in front of me. With everything I read about thyroid surgery, I thought this recovery would be a piece of cake. Far from…so far from. I battled with debilitating migraines to the point I honestly didn’t care if I died. If I had to cough or sneeze, it felt like my neck was being torn open and exploding. Sleepless nights and days for that matter. Emotional states that were so to the extreme my stomach turns just thinking about it. The fatigue I dealt with was like nothing I have experienced in my life. It wasn’t about not sleeping, it was about my body almost feeling like it was shutting down. But life had to go on. I had to be back to the grind in 4 weeks. I looked through my closet and found a smile somewhere back there and slapped it on. I had my auto-answers to the same questions ready; How are you? Getting there. How does your neck feel? Better. Are you getting rest? Trying to. And all those answers were said with the smile I found in my wardrobe.

It is all silent pain. Silent suffering that no one understands except for the other people who may be suffering similar problems. I wish I found the Facebook pages that support the millions of people suffering from thyroid problems and diseases. It would of helped me in so many ways leading up to my surgery. All the reading I have done shows that every single patient’s problem is unique and needs to be treated that way…not by a ‘one size fits all’ type of prescription.

I don’t feel like myself because I am not myself. So many things feel like they are missing besides the obvious. If there is someone in your life who may be suffering from thyroid problems or other silent diseases please support them. You may not understand it (hell, I don’t even understand the things I feel at times) but they need you. They need you to just listen and be aware of what they are going through. And most importantly, DO NOT take there severe mood swings personally. If they snap or seem to take a step back from all their relationships, let them. Show up at their door unannounced with a smile and hug. Hugs are really important and sometimes that is all the person needs. Don’t point out their scars, they know they’re there. I don’t care how curious you are about it. That one question may bring a person back to a difficult time they are trying to move on from.

This month I have to get a heavy duty radioactive iodine treatment back in Boston. I’m hoping after I am done glowing in the dark I can become myself 100% again.

I will be on prescription for the rest of my life to do the job of my missing thyroid gland. It has been 9 weeks since my surgery and I’m still trying to figure out when my body will balance out or if it really ever will.

I have no thyroid because of cancer.

I had no clue how important that butterfly shaped gland was until I lost it.

And I didn’t even get to say goodbye.

If your body is making changes that no one seems to be able to figure out, get your thyroid checked.

With everything that happened to me in the past two years, I had no choice during that time but to roll with the punches. One after the other and getting back up. We have all heard the famous phrase “Good things come to those who wait.” How about those who also deserve it and shouldn’t have to wait anymore?

I was blessed with someone who has been nothing but loving, caring, compassionate and understanding for who I am and what I am currently going through. He may just be one of the most beautiful human beings I am so fortunate enough to have entered my life at the perfect time.

Thyroid Cancer: The Silent DiseaseWaited? You got that right…

Thank you, Ryan

About Jessie L O’Donnell

Jessie L O’Donnell is a South Florida based portrait photographer who was diagnosed with thyroid disease and other thyroid aliments in 2011. Two years after being diagnosed and receiving a full thyroidectomy, she realized she was not alone after discovering a handful of support pages and websites. She was inspired to write for others after reading so many other personal stories, to share her experiences and offer insight. Through her powerful photography and writing, she captures the emotion of her suffering and finds much needed healing. She currently lives in the Fort Lauderdale area with her hound dog Walker.

Website: Jessie Lee Photography

Facebook: Jessie Lee Photography

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About Dana Trentini

Who knew that little butterfly-shaped thyroid gland at the base of my neck could affect my life so completely? I founded Hypothyroid Mom in memory of the unborn baby I lost to hypothyroidism. Winner of two 2014 WEGO Health Activist Awards: Health Activist Hero & Best In Show Twitter. *Hypothyroid Mom includes Affiliate links. Connect with me on Google+

Comments

  1. DelVita Ahmed says:

    Thank you so much for sharing this article. I am definitely going to get this nodule I have looked into more seriously. They were monitoring it via ultrasound yearly, but now they’ve suddenly upped the ultrasounds to every 6 months. Didn’t really say why. :-/ If people only knew just how big a part the thyroid gland plays in their health and bodily functions, everyone would try to become more aware of it.

    • All the best for you DelVita. Ask your doctor why they upped your ultrasounds. Find out what they are seeing and also whenever you have any doubt about your medical treatment, never hesitate to get a second medical opinion.

    • My doc wanted to have ultrasounds every 6 months after the first ultrasound because my actual physical only one could be felt. My ultrasound showed the other two that were deeper. Each ultrasound I received showed more and more that were slowly appearing and the originally three were slowly growing. Which then brought me to have a biopsy done. Just be adamant about having scans or test done and if they will not cooperate, you bring your health and money to someone who will. Best of luck to you, DelVita.

      • Jess Ariane says:

        Jessie, besides our names ha, your story was similar to mine. I had started out with one nodule it was about a cm and they said oh its not that important, you are a little hyper but we will watch it and re scan you in 6 months, well I did not make it 6 months, I made it about 4 and the original nodule was now almost 4cm and there we three more, 2 on each side. I was told that its great news there are more than the one that means no cancer too. I was like yay, great. Well then my doctor, a internist much like Dr. House ha was not happy with it. He did not like my blood work and my symptoms, so he talked to a endo surgeon and they recommended me to start with RAI, they said we are pretty sure this isn’t cancer and we just want to see if the radiation shrinks the tumors. He said please stay off google and come into the hospital tomorrow. I laughed and said okay. go bright and early and am called back, people in hazmat suits, I am like WTH did he get me into, ha. I swallowed the radioactive pill and was isolated and checked 3 times day one on level of radiation and once the next day and then final day was scan. All along, II am not concerned with cancer at all. Next day I see my doc and he says Jess, you have cancer, great, what? He explained cold nodules and hot nodules and how fast mine are growing and how they need to come out ASAP, surgery was scheduled in 3 days, they sad oh its quick no more than an hour, ha mine was almost 4 hours II woke up screamin a no no with a neck incision, ha. Anywho, I was told that this was it, you will take a pill and be a-ok. II so wish that was true! Life was never the same. I also had a partner, newly married, only 5 months, he said he didn’t want a sick wife and he left. NICE right ha.
        Thanks for sharing your story, it was great. You are a butterfly warrior now and just keep flying!

        • It is so crazy to me how many stories there are that the cancer is not detectable until it is at a serious stage and only found because of something else that may have come up. You made me cry by calling me a butterfly warrior. It means more than just one thing to me. The butterfly represents so much more in my life. My friend at 19 years old lost her battle to Hodgkins disease and we released butterflies after her passing. Because of her I made the butterfly in my photography’s business logo. Years later, I find myself with major problems with my butterfly shaped thyroid gland which has brought me to this point in my life. Thank you for sharing your story and your kind words.

  2. Very dear story and thank you for sharing. I so appreciate the reminder of not asking about someone’s scars…, as even being curious out of care can be so hurtful to someone. (((hugs))) :)

    • Happy to have you on my site Grassfood.

    • Somehow my comment went all the way to bottom for you, grassfood! It’s all about just being mindful and aware before pointing things out that one might be curious about. Now I don’t mind…because I get to share this story with them and hopefully they can too. Thanks for the hugs, they are always needed:)

  3. Eileen Carratala says:

    Thanks for sharing your story. Where in South FL are you in? Who is your Endo? Looking for a good one.

  4. Hi. Just had to say how this brought me to tears ten years after my own thyroidectomy and thyca diagnosis. It is a journey i would not wish on anyone. Online support got me through and realising who my friends are. I send you blessings and love and health. Please feel free to contact me if you would like. x

    • Happy to have you at Hypothyroid Mom Bree and all the best to you.

      • Thanks Dana. It has been a long road but I wanted to share with Jessie that life can go on post Thyca. I was pregnant with my daughter and nursing my mom through terminal cancer when I was diagnosed. 2 RAI isolation treatments, many lost friends and family and many, many endocrinologists later… I am now 8 months pregnant with my much longed for baby after many losses. Like Jessie I am blessed in my husband and his understanding. But the best support i have found is from fellow women like you who also deal with all the pain thyroid conditions bring. I now take a combi dose of T3/T4 which i firmly believe has enabled me after 10 years to lose 20 pounds and finally achieve a pregnancy and some equilibrium with my health. One size does not fit all and we all need the medical profession to wake up and realise that if a woman presents with symptoms such as weight gain/loss or anxiety, she should not be fobbed off with diagnoses of hormonal imbalance or menopause. And Jessie I really wish you all the best. Your scar is beautiful hon!! I wear mine with stronger pride every time i see a fellow survivor. Hugs from Ireland to all!

  5. Thanks for boldly sharing your story. By breaking the silence of thyroid disease we are helping to educate other sufferers as well as health care professionals. The key is to go with your gut and seek a health care professional who listens to you. I have been diagnosed with thyroiditis and chronic uticaria/angioedema for about a year now….will go for my 3rd ultrasound of my thyroid in a few weeks to see if my nodules have continued to grow and perhaps have them rebiopsied to see if still benign….my health care professionals(I have many) all state that my levels are normal… But what really is normal? I think that’s part of the problem with the current treatment guidelines….it’s not a one fits all kind of disease unfortunately. Let’s all keep lifting each other up in prayer and thought…

  6. jennifer says:

    Ive been dealing with a thyroid goiter for 4 years and 4 doctors, being told all my levels are normal…im exhausted from that! i have all the hypothyroid symptoms you can imagine. After much research and being told so many times I was “Normal” i took it upon myself to take a thyroid med that belong to my MIL. Immediately within the next day my symptoms where diminishing and with every second, min, hour, day, week, month i felt 100 % better and the goiter was starting to shrink. Found a doctor who was understanding of the desperation i undertook, but recommended i go off the medicine for 4-6 weeks and get new blood work under her care and she would look at my numbers and symptoms and then with a clean conscious prescribe the correct med and dosage to me. Since being off of the meds, i am back to feeling ALL the hypothyroid symptoms all over again, goiter has gotten larger and am literally dying of exhaustion! My blood work is due in one week ..at this rate i will need to be carried into the building im so extremely fatigued..I HATE THIS GLAND!!

  7. This was an awesome story. These are the words I have been wanting to say for years, but felt no one was listening or even cared.
    Thanks

    • Happy to have you at Hypothyroid Mom Lisa.

    • I thought the same way too until one day I just couldn’t handle the silence anymore. I wrote from my heart and the tears that came out while doing so. It is an emotional roller coaster. Thank you for taking the time to read it and i am so happy that you know you are not alone! We are all here together!

    • Janel Santos says:

      Wow Lisa….that’s exactly where I’m coming from. I think that I’ve felt that way since 1984. I started writing my story and decided to do it on Write…because, I didn’t realise how hard it would be. I guess I’ll post it later. I’m still in the “no one cares or listens” mode…so I may not. I’m tired. Super woman all my life and now I’m just a wet noodle. Sorry for the negative input…it’s hard to be positive. Thank you all for your incredible stories. When I grow up (I’m 68) I want to be just like you.

  8. Thank you for sharing your story. I was diagnosed in 2008 after several years of being monitored and having normal blood levels. Its been 6 years since my first surgery and my body still isn’t right, sometimes its so hard to stay positive.

    your story has helped my family understand better what it is I am going thru.

    Thank you

  9. thank you for this! I too have nodules and then they started to hurt, so I just scheduled another ultrasound, mine are growing too…

  10. Marilyn Thompson says:

    I have almost the same story. Thanks for sharing. Know I am not alone in this.

  11. My Jessie Lee, You have been through so much so bravely, and have shared your journey to help others – you are so kind and generous, a truly beautiful person. Love you so much. Love, Mom xxxooo

    • So nice to have Jessie’s mom here on Hypothyroid Mom. It must be so hard watching your daughter go through this. It is so beautiful that Jessie is sharing her story and spreading awareness. I have no doubt that this article of hers will save someone’s life. Someone will read her story and push for further testing.

    • MOM! I love you too! I would of never been able to get through ANY of this without you and dad and Sarah (my awesome sister)! I hope so very much this helps so many people!

  12. I am 25 now, and was diagnosed with thyroid cancer in 2010. It has definitely been an unexpected life changer in so many ways.
    I sympathize with you, being young and facing this challenge. It caused me to struggle in school and drop out before getting my degree, leaving me with few job options and a mountain of debt. Since I was quiet about it and didn’t look like someone’s stereotypical image of a cancer survivor, I felt lonely and almost guilty for feeling so ill.
    I agree with you that every thyroid issue is unique and should be treated thusly. I heard so many different thoughts and opinions about thyroid diseases, and very little of it actually applied to my case.
    I have to say, I have slight regrets about not researching my treatment options further, and rushing to do whatever a doctor suggested. I am so thankful to be cancer free. I think about this good fortune every day. However, I also have daily reminders of the effects of radiation, and that a body is not the same without a thyroid.
    I hope your health is good to you!

    • Hi Kennedy, I’ve heard from many young people with thyroid issues and thyroid cancer. I wonder how many young people go through doctors’ offices with thyroid symptoms that remain undiagnosed. I’m happy to hear you are cancer free and wish all the best for a great future.

  13. Melanie Smith says:

    I went to my primary care 6 times in 2006 and was told I wasn’t sick. I went to a ears nose and throat dr. and asked him to look at my thyroid and he said it was fine took me by the arm walked me to the door and said no need to come back -just get a hobby. I went to a cardiologist who looked at the test result and told me I was a bored housewife (I am a working mom with two kids). A year later I asked to see the test results and it said there was an enlarged thyroid. I asked for thyroid test and was told come back in a month (on my 6th visit). I went back and she reluctantly tested me. The ear nose and throat dr. that walked me out of his office operated. I had two types of thyroid cancer and it was all over the thyroid. No doctor told me there was any follow up treatment for a week so I had no meds and no knowledge of further treatment. More gliches in care came. I am lucky to now be at Loyola in Maywood IL and they take good care of me. Just to let people know that years out it is just fine. Lessons I’ve learned have helped me help others. Pain I’ve endured has made me more atune to other’s pain. I had a lovely woman with stage 4 lung cancer who modeled a life every moment and organized dinners to be delivered as well as 24 hour comfort. She has since died but I’ve been blessed by her . My lesson from it- never let anyone go through this alone. Also, get test results to keep. Also all doctors may not be your just right match. Never give up finding the right doctor until you find them. Good luck feel free to e-mail me.
    Mcsmith4@comcast.net

    • Melanie, It’s so sad to hear stories like yours where you went to so many doctors yet no one picked up on your thyroid issues. It’s amazing how our symptoms are thought to be in our head and not real. Yet there you were with thyroid cancer and all those doctors missed it. Happy to hear you are under the care of good doctors now.

  14. Pauline Rice says:

    I have had a diagnosis of Hashimoto’s Disease since I was age 39 just after my first husband died of throat cancer (tumor deep inside his voice box) and am still on the pill Levothyroxin. I still believe it was the stress of losing him and raising my four children w/o him that brought out this disease of mine that was dormant and inherited. I am now a grandmother of 11 and great grandmother of two beautiful children at the age of 67. A year ago my daughter age 44 was diagnosed finally with Hashimoto’s after many blood tests showed “normal” levels for her thyroid gland. We both knew different as she suffered from the same symptoms I had years before. Her problem is having to deal with the Veterans Administration for health care and their ever-changing doctors. I relate to all who have had the problem of doctor’s telling you nothing is wrong after test after test. The problem is with the tests and also getting the right doctors. Although it was never the blood tests that proved the Hypothyroidism or Hashimoto’s Disease. It was the needle biopsy I had years ago after a pea sized goiter was found by an Endocrinologist I saw in Sylvania, OH. At the time there were only three or four labs in the country that were able to check this fluid from the biopsy to tell if it was cancer or not and if it was Hashimoto’s. It was not cancer. I was told I had an auto-immune disorder called Hashimoto’s Disease named after the doctor who discovered it. I had other auto-immune disorders as well that were just shrugged off as nothing previous to this. They described an auto-immune disease to me as one where your own antibodies attack your own body organs. In my case it was the thyroid. I also had moles that were attacked and turned white and disappeared.
    I was not told it was hereditary, but found out it is definitely inherited by reading a Reader’s Digest Medical Guidebook which was very thorough and answered more of my questions than any of my many doctors. I still refer to that outdated book! I remember before my diagnosis, of one doctor telling me all my symptoms were in my head! At that time I worked full-time in an office as a claims examiner for an unemployment office. I found that I was seeing triple and could not find the right line to write on. My hands were trembling like you sometimes see in old people with palsy. I was having mild seizures, losing my hair, sensitive to heat and cold, having trouble with my female organs and was scheduled to have exploratory surgery, had an umbilical hernia, skin problems, a hunchback developing, and mucus under my skin, nail problems, dry hair, lungs slowing down my breathing, slow heart beat, slow foggy thinking, tired all the time, no energy. A new doctor examined me and in a 10 minute physical found the pea sized goiter, my umbilical hernia, and sent me to a surgeon for hernia repair, cancelled the dangerous exploratory surgery for endimetriosis, did a nuclear scan of the thyroid, then sent me to the thyroid specialist I mentioned who did the needle biopsy. Amazing what the right doctor can do in such a short time! I have been OK living with it for 28 years and never had to have surgery on my thyroid, until now. However, now I have been found to have Hyper-Para-thyroidism too, and may be facing surgery to remove both the thyroid and the para-thyroid! My kidney doctor has been watching my calcium levels spike in the past year and just sent me for another nuclear scan, but this time for the para-thyroid gland. He says if it comes back with even one nodule he will send me to Ann Arbor University of Michigan for the surgery. That is pretty scary to me. I guess the para-thyroid controls your calcium and too much in your blood can cause kidney stones and bone loss and can be indicator of cancer. My hips have been hurting for the last 6 months. A bone density test a year ago showed no loss. My voice has changed and I have trouble swallowing. At night I feel like my throat is closing up and sometime find it difficult to breathe. I eat cough drops which seem to help. I am waiting for the results of my scan. three days has seemed like 3 years! I have also noticed certain foods I eat are really affecting my digestive tract with recurring frequent diarrhea. My mouth is always dry and sore and my voice is affected. I have always been known as a slow person and a night owl, and have re-occurring depression. That also runs in my family. Other auto immune disorders are surfacing now in my children and grandchildren, like Celiac Disease, Raynaud’s Syndrome (hands turn white if least bit cold), severe allergies/asthma, growth hormone issues (like not growing fast enough or Dwarfism, or very tall too early), male breasts producing milk, severe acne, eye sight problems, mental illness. Some things I don’t know the technical names for but do know they are all affected by hormones or lack thereof. There is even a study out there about the effects of bromine on thyroid glands. This has to do with the type of salt we all eat. Since reading that book I only cook with coarse Kosher Salt used for canning (no iodine). It is nice to know that there are professionals out there somewhere who can and will treat us survivors with respect and are willing to do the right things or send us to someone who can. I appreciate having the ability to vent and share on this site. Good luck to you all!

  15. I hate my thyroid ! It has ruined my life ! Now it might steal my life from me as there is a tumour growing in it ! I feel like I’m chocking all day long

    • Liisa, I’m sorry to hear all you are going through. Whenever you are in doubt about your medical treatment, never hesitate to get a second medical opinion even see 10 doctors until you find someone who helps you. Also contact The Thyroid Cancer Survivors’ Association http://www.thyca.org

  16. My doc wanted to have ultrasounds every 6 months after the first ultrasound because my actual physical only one could be felt. My ultrasound showed the other two that were deeper. Each ultrasound I received showed more and more that were slowly appearing and the originally three were slowly growing. Which then brought me to have a biopsy done. Just be adamant about having scans or test done and if they will not cooperate, you bring your health and money to someone who will. Best of luck to you, DelVita.

  17. It’s all about just being mindful and aware before pointing things out that one might be curious about. Now I don’t mind…because I get to share this story with them and hopefully they can too. Thanks for the hugs, they are always needed:)

  18. It is comforting to also know that women who have gone through similar medical problems are able to conceive especially without a thyroid. Even though I am doing my best to be and feel well now, I am trying my.best to.not worry about the future when I do want to start a family. Stories like yours make me realize that it is possible. Best of luck to your healthy future!

    • Jessie we honestly were not even trying. We only just had our wedding and i had re started my degree and had mentally promised myself a year before launching into what i genuinely believed would have to be an assisted reproduction because of my hugely complicated thyroid and residual medical conditions. Lo and behold, junior is due in June! I am 100% attributing my pregnancy to being bullish about my own health. Don’t accept what doesn’t feel ok with you. There are doctors who will listen to you but you have to find them because sadly they are few and far between. But the pay offs are huge. Also give yourself the bad days. Accept them and be kind and gentle with yourself on those days because they will happen. Our disease is too unpredictable for them to not. But know that you will get back up on the horse and life goes on. I wish you love and good health xx

  19. I am so incredibly overwhelmed with the response from my article. In 48 hours, over 5,000 people liked it and shared it. I am receiving emails from around the world thanking me for sharing my story because they don’t feel alone anymore or they have already made an appointment with a different doctor to get answers. It brings me tears of joy that I can help others in their struggle through my story and photography. This is just the beginning! A woman named Jess as well commented to me “you are a butterfly warrior now and just keep flying!” Thank you all so much for reaching out to me after reaching out to you. You are all butterfly warriors here- Keep fighting for answers! Much love and good health to you all!

    • Jess you are a beautiful butterfly! We are very proud of you and what you are doing. Amazing how you are able to help so many.

    • REBECCA REYNOLDS says:

      You are awesome, thank you for sharing. I waited a few years, and had hysterectomy, finally in my time off recovering my nodules were found. I was in surgery two weeks later, then to learn I had thyroid cancer. That was my July last year. I’m Blessed but over the last nine months learning to deal… in December had a strange lymph removed on my neck…. three surgeries in six months…. I’m 48 in post menopause, it’s a challenge with tired, hot flashes and weight.I wish someone could of found stuff or listened not just blaming a menopausal woman of eating wrong, being lazy. Thankfully all the stories of all my fellow thyroid warriors, and sharing of my story will help bring awareness…. Bless all of you amazing strong people.

  20. Thank you for sharing this story. I’ve had Hashimoto for 25 years now. My right thyroid was removed last week – and with the exact same symptoms the writer shared – large goiter, pain. I had been telling my endocrinologist that it felt like I had arthritis in my neck. Thank goodness she jumped on it right away and sent me to a surgeon after my biopsy. No cancer thank goodness, but it’s out. Thank you again for sharing this. There is comfort in relating to someone’s story.

  21. So can relate to your story! I support my family as a photographer. Losing my voice was my first symptom and was told it was acid reflux, until an ultrasound found a large nodule. The doctors wanted to leave it and watch, but it bothered me too much. They removed half. It turned up as cancer, and the other half had a nodule that they wanted to just watch to see if it grew. I insisted that they remove it, three months after the first surgery. That side had cancer, too. It was soo hard to get through the first year of weddings and portraits! I was tired cold, depressed, but didn’t want to alarm my clients so I found my smile as well. After two years of a blur of a life, as well as a 40lb weight gain, I found an endocrinologist who put me on the correct dosage of levothyroxine.

  22. I just have had a total thyroidectomy..can’t wait to get back to normal.

  23. Thanks for sharing. I’m going to show this to my fourteen year old daughter that just had a thyroidectomy in October for an egg-sized tumor that was biopsied as “follicular carcinoma” but those cells were “incapsulated” so she’s considered cured after surgery. She is such a little trooper and has hardly complained one bit. I do see changes in her personality but her labs are at the high end of normal so her pediatrition just wants to keep checking it every 6months. I keep telling him “What are you waiting on?!? You know she’s going to end up on meds anyway and she’s SYMPTOMATIC!” OK. Rant over. She will appreciate your story. She wears her scar like a badge of honor.

  24. Thank you for this article. I was told I had benign nodules and that was it. TSH normal at my last physical but recently been experiencing total chaos with my cycle and other issues. Thanks to this I will be more forceful and demand another ultrasound. Something in the back of my mind has been telling me something isn’t right and you can’t go just by blood work alone.

  25. Sarah Sinclair says:

    Thank you. A year or so ago my doctor found that my thyroid was enlarged after I went in about my nearly absent menstrual cycle chronic headaches excessive weight gain fatigue etc. An ultrasound revealed I have over a dozen thyroid nodules spanning both sides. My basic levels are “normal” and I was told it was fine. Despite increasing neck pain and occasional difficulty swallowing. I am finally getting to see an endocrinology specialist on the 19th of May. Unfortunately I am on Medicaid and so everything has to go through a ridiculous approval process before it can be done. I’ve recently been having a very hard time controlling my temper and losing my patience. I never thought it could be related to my thyroid issues. it is almost time again for my 6month ultrasound. I’m nervous but also hopefull that perhaps something will actually get done instead of just observation.

  26. I can’t even thank you enough for posting this. This is almost EXACTLY my story. I just found out weeks ago, and have had so.many emotions, while trying to remain positive. How am I 32 and diagnosed with thyroid cancer after being told it was benign pre-surgery? How do you wrap your head around it? The only difference is they only did a sub-partial, and now I’m planning on having the other side removed to be proactive. I have read your article several times, and shared your story to my family and friends. Thank you for being that voice for me.

    • Manda, It is sad the number of people that I’ve heard from who were told their nodules were benign then turned out to be cancer. I hope there will be movement towards better testing in the medical world to help reduce cases like yours. All the best to you.

    • Manda, it is so hard to wrap your mind around it. I also find it hard to wrap my mind around the voice I listened to that was on repeat. I truly believe we all have that inner voice…don’t shut it out. If it wasn’t for that voice, my surgeon told me that 1 of two things would of happened. I would of had to have emergency surgery in FL and ended up with a botch job and no voice or I would of been opened up in Boston in June (that’s when I wanted to wait till…) and the cancer would of most definitely been in my lymph nodes and possibly many other places. My tumors had extended off my thyroid but were not attached to anything else and I was almost not a RAI candidate. So they decided to do a very heavy dose of RAI which successfully worked. Good luck to you in your journey and remember that we are all here as your support system!

  27. At a previous company, my boss had thyroid cancer and had to have his thyroid gland completely removed. He showed me a scar on his throat that I honestly could barely see even when I looked super close. He said because of this, he has to take a thyroid pill each day for the rest of his life and have his blood levels monitored regularly to make sure he’s on the correct level of thyroid meds, which (when I knew him, about 5 years ago) he was still having trouble with about six years after he’d had the surgery. You know the old problem, 25mg isn’t enough but 50mg is too much, and the manufacturer doesn’t offer an inbetween dose. So anyways, I’m glad he caught it early and I’m glad you’re bringing awareness to others about this silent killer. He was only 32 years old when he got his thyroid cancer so it can strike at any age, young or old.

  28. Jennifer says:

    Thank you. I was able to get my new lab results …TSH is 2.52, Reverse T4 is 1.07, reverse T3 is 2.9 off meds and I felt absolutely horrific and goiter got large.
    with meds my TSH was 1.14, r T3 3.0, r T4 was 1.28 and I felt absolutely fantastic and goiter was significantly smaller. Only on meds 1month…never any meds prior to this.
    I will see her Monday for MRI results.
    Feeling symptomatic off meds leads me to believe I need meds regardless of what my lab work says. I am possibly in the percentage of people who are sub clinical hypothyroid. What are you’re thoughts?

  29. Thank you for writing this. I am currently 27 years old since I had my daughter almost 4 years ago it’s been a roller coaster I had pain thru out my body I felt depressed and just not me. I went to the doctor they diagnosed depression and chronic anemia. I saw a hemotologist had 8 hrs iv pump of iron. Thought all was well still didn’t feel good but blamed it on depression. Then pain got worst all over my body. Went to doctors about 7 months ago blood work showed liver enzymes elevated hypothyroidism vitamin d deficiency and a positive ana like I had some type of autoimmune disease. So from there started taking a tin of different medications and started seeing a rheumatologist. But I kept telling my doctor my throat hurts on my right side she kept saying it’s probably allergies then 5 months later she finally decides to fill my neck and feels a nodule but decides to wait 1 month before ultrasound just encase it goes down so wait a month. OK what’s another month of throat pain I already have gone 5 months. I do my ultrasound and they find a large nodule in my throat and now I am going to an endocrinologist next week. When I went to the doctors today in fact to get the results she said majority of nodules are benign and if it is cancer it’s a high chance of survival rate very very low risk. Are you kidding me? It was like oh no biggie. To me it’s a little worrisome I have 2 kids and barely make it financially and if I do have cancer I would be able to go to work right away I work as a nurse aide and constantly need to talk and lift residents. It’s nerve rocking to me but also a slight relief cause I am so much closer to finding out what’s been really going on. So again thank you for this for saying it’s not easy it is worrisome and it is a struggle and only you know your body. You know what feels right and what doesnt.

  30. Thank you Jessie for sharing your story. I was also just recently diagnosed with Hashimoto’s,although 18 years ago I was diagnosed as hypothyroid.Even after the changes in medication,I was still not feeling right. So my doctor decided to send me for a thyroid ulrasound.The ultrasound showed that I have a cystic type mass with a thickening wall about 1cm. The doctor referred me to a surgeon. The surgeon really didn’t seem to care,saying it wasn’t that big.My doctor help me fight this,because I know something is wrong. Finally this past Wednesday,I had a FNA biopsy done. They found that the on my right thyroid nodule grew a half cm since it was found and it was closer to the back of my trahcea.I am happy that my own doctor took me seriously that something was wrong. Now I sit and wait to see what my biopsy results are.

  31. Jill Dodson says:

    Thank you for your eloquent words about how almost all THYCA patients feel thru their journey! I love it! Some are easier, some are worse, but the bottom line is that it is devastating to live with…but most recover…to a degree. We are all subjected to medicine for the rest of our lives, but we can beat this too! I ran my first marathon this year…for my THYCA brothers and sisters, my brothers and sisters in Arms, and anyone who struggles to get out of bed in the morning!

  32. I love talking about my scar and I never get offended I show it off like it’s a fancy tattoo. My scar only brings more aweness to thyroid cancer.

  33. teresa vett says:

    I am so sorry for all you who suffer with your thyroid. I do not have cancer but I battle with my doctor to raise my level of medication. I am hypo. and we go round and round about what normal is. Normal for me is not normal for anyone else. I became ill 6 months ago. I could not put my finger on it I was just plain ill. I would fall on my bed after a few hours, could not take a hot shower for near passing out. I kept thinking it was my age. My hair started falling and I knew. I went back to the doctor and demanded she raise the med. She talked in her little machine saying that this patient was demanding and knew the risk. In 5 days I awoke and my mind was clear. On the 7th day the illness was gone. It has been 4 weeks now and I see her in two weeks. I know what she will say but I will not lower this until I feel I need too. We know our body better than anyone. If your med is too high you will never sleep, you will be anxious and angry with every one, and you will have hair falling too. I am amazed at all you have suffered because NO ONE listens! I will never be normal, I always know something is off but we go on doing the best we can. When we have done all we can , the Lord will do the rest. You all have my blessings.

  34. Janice Vaughan says:

    It’s insane that I could have literally written that when I was 24. So similar.

  35. Hi, I had a biopsy on my right thyroid 2days ago as an ultrasound showed it was a cold nodule. It’s 2cm. I have trouble swallowing and sometimes get pain from it. I also have severe bone pain at the moment. I had a nuclear bone scan the same day as the biopsy. I’m quite scared that it could be cancer. My tsh always comes back in range, as do my ft3 and ft4. :-(

  36. Last year during a routine sports physical, I found out from my doctor that I had an enlarged thyroid, visible on the outside that I had no idea about. She scheduled me some bloodwork and an ultrasound for the next day. My bloodwork came back perfect, but my ultrasound did not. I had a 1 cm nodule on my left lobe and a .9 cm nodule on my right. She sent me to a specialist a few cities away, about a month after my nodules were found, and he told me that it shouldn’t be cancer, since my bloodwork was fine and I’m so young (I’m fifteen years old). I was scheduled in another six months for another ultrasound and bloodwork. Literally only 2 days after my second ultrasound and bloodwork, I had an immediate appointment with the specialist again. I knew if I had gotten an appointment so quickly, it couldn’t have been good. Well, my bloodwork had once again come back completely fine, but in a little less than six months, the left nodule had grown half it’s size. They still assured me that it wasn’t cancer, but I was scheduled for a biopsy for a month or two later (my mother couldn’t get off work on the days the specialist could conduct the biopsy until then). When I went in for my biopsy, I threw a fit. I hate needles and they were going to shove one into my neck after repeatedly dismissing my occasional complaints of pain and worries of cancer. So the doctor conducted his own ultrasound and concluded that the nodule didn’t seem to be of suspicious matter, and didn’t make me go through the biopsy, but scheduled me to come back in three months. I have to do another ultrasound and most likely a biopsy on September 29. I’m still scared of the needle, but these past three months it’s like I’ve been another person. I’m having some wild mood swings and highly irregular periods. I’m tired all the time, and still my mother doesn’t take into consideration that it may be cancer. Cancer of all kinds runs in my family, as does hypothyroidism. Thank you for sharing your story. Sometimes I do feel like I’m the only one going through this.

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