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.

      • Hi Jill here.
        I was diagnosed hypo with goiter with multi-nodulars on it. So many they can’t count all them, . But this kind has a extremely low cancer rate so he is not worried at all & would never take the gland out as important as Thyroid unless he highly suspected cancer. I’ve been seeing him with this for about 6 years or so not exactly sure of date. But I have hoarseness because of it, sore throats, necks, when I breathe something crackles in my neck area, have swelling, trouble at times swallowing. I asked him, because he says the largest nodules are changing very small growth over each year, just small growth & not cancer. I asked him were they causing me those problems? Oh well yes they could be because these kind can get inflammatory at times. But he quickly ran that ultrasound over my neck, didn’t note the size change, or anything and the one large one has grown to about the size of a nickel little bigger. But nope just a goiter with multiple nodules, normal for it to be covered in nodules he says. But unless they grow into important tissues its just important to leave them be. Oh yea fun for him to say as year by year i am suffering more side effects to deal with. Makes me feel like a fool really you know? he was like see all these that look like little clusters all together? Yea..that’s nodules on the right side, here on the left is clusters but here’s the biggest one n he shows me how big n its as big in measurements as about a nickel or little bigger. But he says, go I’ll see you in one year don’t worry! I just don’t know if I should relax take the side effects, try not to worry. Or get a second opinion?
        What I guess stays in my mind is my best friend for almost life diagnosed cervical cancer. They thought they got it all. But it was such a bad cancer they wanted her to have Chemo too. She went through that. And declared cancer free. They took her port out. But she had to go be examined & tested every couple months for the year after. All clear. She goes back to teaching, living her family life. And is still going for the checkups. Finally there over!!! Yea!!! On with life, but with a even more zeal, living, loving each day. What happens? Yep): She goes in her marker test is bad! In her exam, then ultrasounds, MRIs, huge mass spread out all from her chest down to low regions. No surgery, it was up against a Main Artery. And chemo would give her a few more extra mths but miserable ones. So she went with GOD. She lived almost a year. It was horrible! I think maybe I just don’t trust drs.? Thanks Journeyed ones for reading. Wish you the best………..

        • Teresa Riggs says:

          Hello-
          I have a knot where the base of skull and spine are. It is not painful but I have incredible headaches, never been a big headache gal. Dr first said is s muscle go to this massage theropist, I did. The theropist stopped in middle of massage and excused herself to call Dr. When she came back in she advised my knot was not muscular and Dr was ordering scans. Two days later had the scans and got the call that I had two nodules rather large on thyroid and they would be back in touch quickly. I am exhausted, cry one minute, bite folks head off the next. Ringing in ear, I can feel things crack when I move my neck and now I sound like a frog. I have not wanted to eat for past couple of weeks.

          • That sounds sort of like a chiari malformation if it is where your skull and spine meet (spine enters a hole in the base of the skull). I am glad they caught your thyroid but I wanted to throw that out there in case you were still having issues in the back of your head and with the headaches.

        • Charlotte says:

          Jill Go to another doctor. I had the same problems that you are having. Had thyroid removed two weeks ago after dealing with this for several years and having many ultrasounds and a few biopsies. Symptoms got worse. All biopsies before surgery were benign. After they removed the thyroid, pathology report came back with two small cancer tumors. thank God they removed my thyroid.

    • 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.

    • I can some what relate to your article and it scares me. I feel so sick and doctors cant find anything wrong with me. They say my thyroid seems enlarged but my blood work comes back normal. I don’t get my period, i am beyond exhausted, I’m forgetting things like i just have a brain fog. My mood is like a roller coaster. I have aches and pain all over my body. I don’t want to be around anyone just really down for no reason… but doctors and everyone say there is nothing wrong. I don’t even know how to explain it but this is not me. I have 2 boys 9 and 5 who say “mommy is always tired all she wants to do is sleep” i feel like I’m loosing my mind. I’m not saying i want anything to be wrong with my thyroid but i want to feel good again.

      • Arelis, it took me SEVEN YEARS of telling my doctor that I was exhausted all the time, cold, even in hot Southern summers, forgetful, foggy-brained. Seven years and 3 doctors, and every single one of them said, “Well, we tested your thyroid and it’s normal.” Or …. “Of course you’re exhausted – you’re fat and you don’t exercise.” Or …. “You suffer from depression. That’s the only reason you feel lethargic. It’s just in your head.”

        When I asked what “normal” meant on their lab’s thyroid tests, they said, “Oh, anything from 0.5 to 5.0, and you’re 5.0 exactly. Normal.”

        Seven years. I finally got to the point where I couldn’t stay awake more than 2 1/2 to 3 hours. Then my brain and body shut down and generally needed about 2 hours of sleep so that I could stay awake another 2 1/2 or 3 hours. My husband doesn’t drive, so every morning I drove the 30-40 minutes from our house to his office, then the 25 to 35 minutes to my office, worked a couple of hours, napped a couple of hours, worked a couple more hours, then drove back to hubby’s office and slept in the car until he came out 30 minutes to an hour later, just to be able to stay awake long enough to drive home.

        Finally, after a routine visit with labs, my doctor called to say that the hormone level was 9.9. Ultrasound showed a nodule, biopsy was inconclusive, endocrinologist recommended removing the lobe, Synthroid was started …..

        It wasn’t until after the surgery that I found an article in a medical journal that said although 0.5 to 5.0 is normal, any lab values from 3.5 to 5.0 should be considered and treated as hypothyroid *IF* the patient is symptomatic. This article had been published 2 years before my first complaint of exhaustion. I was wildly symptomatic and had a blood test result of 5.0. I should have been treated for hypothryroid for seven years before anybody would listen to me.

        And even then, it was 16 months to get the Synthroid dosage high enough, and it was a pharmacy error that gave me the higher dose I had been asking for (instead of the low dose the doctor recommended).

        Fortunately, I now see a nurse practitioner. She understands that when I tell her I’m exhausted and I’m cold, something is out of what even if the lab values are “normal”. I am symptomatic usually by the time the blood levels hit 3.0, so what the doctors consider the high end of “normal” (3.0 to 5.0) is for me nothing short of misery.

        Long story, and I apologize. My whole point: Get your test results and look at the numbers yourself. Remember that the guidelines put out by endocrinologists says that “normal” lab values are NOT normal if you’re having symptoms. If your family doctor won’t listen, get a referral to an endocrinologist. And another. Change family doctors if you have to. Get a support person to go to the doctor with you and be your advocate. Insist that they keep looking.

        (The last doctor I saw, who finally listened – my first visit with her, I greeted her with the words, “If you say it’s in my head, or because I’m depressed or fat, I swear I will start screaming right here right now. I’m exhausted, I’m cold, I’m miserable. I need help, and I need someone to take me seriously and believe me.” She did.)

        • I have already request my lab results… i see a cardiologist on 2/20 because of course the tiredness, shortness of breath should be related to some type of blockage due to my weight lol… i also feel cold all the time, my legs cramp up, not severely but to the point of being uncomfortable. Nothing makes me happy is as if i just don’t care about anything and that is not like me. Thank you for these post and the article it has really helped me understand. Hopefully i don’t have anything but if i do i hope its not too late.

      • You must find a doctor of Naturalpathy- or someone who will prescribe thyroid, before it develops into Hashimotos, like my daughter has – you don’t want that! Doctors told her the same thing, until she found a doctor who prescribed for thyroid, even tho test show “normal” levels

    • Hi,
      Thank you for sharing your story. I am going through some similar issues. I had the biopsy. They were going to “wait” and watch but I decided to take action. I called my doctor today after going to two different specialists, a gi and a lung specialist. I have SEVERE COPD. My thyroid tests always come back normal. But I have so many other symptoms. I have been having issues swallowing and breathing. The breathing was not related to my copd this time. So, I called the Endocrinologist after they called me two eeks ago to tell me the nodule they did a biopsy was on was benign. His response was “you didn’t tell me these symptoms first time we talked”. Thing is, I did, he just didn’t listen I don’t think and now I have a consult. Now he looks at the biopsy and sees my 3.5 benign nodule but wait…there are a bunch of other nodules that “could be” causing the issues. Finally. You do have to keep pushing for answers. Now he is talking about removing it partially because of the large one he is finally “concerned” about. It is sad what has happened to our medical profession. All about insurance cards and the latest drug to push. I can’t get anybody to understand what I am going through. My husband tries but he doesn’t know.

  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…

    • My levels were normal and the nodules had turned to cancer, whether from the irritation of the biopsies, who knows. But they grew from .3 to 1.3 in six months so stay on top of this. The ca had broken through the sack around the thyroid…fortunately we still believe it was still contained within. Good luck friend.

      • All the best to you NE.

      • You bring up a curious question about if nodules could turn cancerous after a biopsy. My surgery was not long after my biopsy which did irritate my neck incredibly after for some time. My tumors had gone beyond the thyroid but did not attach itself to anything else when they discovered it. I almost was not a candidate for RAI treatment because of it. But since it was not attached to anything else and the 2 nodes they took out that were closet to my thyroid were negative, they decided that I was able to receive RAI treatment but in a much higher dose than what they considered the normal. The treatment was successful. Good luck to you!

      • I was diagnosed hypo about 8 or so years ago. I was seeing my regular physician for several different things. I had been diagnosed with Fibromyalgia in 2001 & with it came a rush of illnesses. So for me its always hard to tell what may be causing which to do what. But I was very exhausted couldn’t hardly get out of bed. She kept telling me I needed more exercise. So some tests were run and my thyroid level was very low. So she had a scan to be done of my thyroid. And it came back with a goiter on my thyroid. So from there I was sent to a Endocrinologist I believe. And a ear, nose & throat Dr. The ear & nose is the one that has done scans twice a year, and blood work to check levels. I’ve had to go up twice I think within the years since diagnosed, once it was too high & gave me heart palps & I couldn’t take it. But its Levothyroxine. My goiter from the beginning showed up as too many nodules to count. But the Dr. has had 2 he has wanted to watch, that grow some & look suspicious. I’ve honestly wondered if I need a second opion. He has started doing his own ultrasounds in his office for about two years now. And he doesn’t take a lot of time with it.
        I feel bad all the time. So if I had the C. Word, it would probably be too late when they found it. So I don’t know. When I found out the goiter had too many nodules too count, I thought that alone sounded serious enough to come out! I wondered how he could keep a eye on them all.? But he has explained how important it is to keep that thyroid, unless it becomes a life & death situation. I wake hoarse, after exerting hoarse, waking up smothering, but I also have sleep apnea. I feel like I’m choking. Will not wear anything up around my neck, but I’m also heavier than I was ten years ago. I have sore & tender places over thyroid area. Feel like I have a sore throat at times. Trouble swallowing at times. And the strangest. Lately itching over top of thyroid area???
        Should I get a second opinion?
        I appreciate you sharing & my heart goes out to each of you for what your going through, & praises for you that have made it out the other side after such a painful battle……
        Jill

        • Yes yes Jill get a second medical opinion. Always follow your instincts. If something doesn’t feel right to you why not get a second even third medical opinion to be sure:

    • Hi Krista, I assume you were diagnosed with Hashimoto’s Thyroiditis? I ask because Hashimoto’s and chronic urticaria can be linked and if you haven’t had your thyroid antibodies tested for Hashimoto’s yet you should. Here’s an article on this connection followed by an article on Hashimoto’s:

      http://drclark.typepad.com/dr_david_clark/2012/07/the-link-between-hashimotos-autoimmune-thyroiditis-and-chronic-urticaria.html

      http://hypothyroidmom.com/hypo-like-a-rock-star-hashimotos/

  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.
    [email protected]

    • 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.

      • To Rebecca Renolds:
        Hypothyroid at 19 yrs old. Bunches of med doses up and down but no real concern by multiple doctors when I tell them that I don’t feel good. Eventually I decided to just quit complaining. I dislike complainers anyway.
        All of my paternal relatives are extremely obese but none of them are hypoT. As the pun goes, ‘Nothing runs in our family, it waddles’. Heart disease, diabetes, depression, etc are concerns but no doc seems concerned beyond writing the generic script and insurance/getting paid.
        I’m at 48 also. Premenopausal with all the junk that comes with it. Current doctor just told me to just go for a walk to feel better. If I ask more questions that he can’t answer he then just seems to shrug and walk away.
        Thanks for posting. Your comments rebuilt the fire inside to get real answers to my very real symptoms.

        • Rebecca Reynolds says:

          Cynthia it was so nice to hear from you…wishing you a wonderful New Year. May health and relief find all that are suffering with anything to do with thyroid. I know there are worse things of course but thyroid seems to be so misunderstood and often never even considered…why some drs are so uninformed or so happy just writing us off as lazy fat aging women. I am glad to have at least a wonderful family dr who is a woman and who finally diagnosed me but because of the cancer I have to deal with another man dr who can be nice but he can also just pass things off as a product of my of course eating bad

          • Hi, yall. Everyone’s symptoms sound so much like what I have been going through for four years. I have had three u/s in three years. The doc always says,” well there are more, but as long as they are clear, we don’t need to!doanything.” For the last three months, I have this cough that drives my husband nuts. It is sporadic, I can’t track it to any specific source, other than, in the past this happens and I put it down to more cysts on my thyroid. That is what the docs say. Also, I am battling Rheumatoid Arthrits. I can’t take NSAIDs, My face swells and my stomach gets very aggitated. I am afraid to take RA meds, as they can cause cancer as there is so much cancer in my family. I guess I just ned to get another u/s. Yes, I am a little nervous, now, after reading everyone’s stories. God bless al!of “Butterfly Angels.” Do my symptoms resemble anyone elses?

  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.

  37. Cyndi Penny says:

    Hi there! I just happened to come across your blog when I was googling my thyroid condition. For years I have told doctor’s that I must have issues with my thyroid. I was infertile and told I could not have babies (i now have two beautiful little boys- it took me 4 years to get pregnant with my first son). I was diagnosed with PCOS about 7 years ago. I have never had a regular period, in fact, I am lucky to have a period 2x per year. I am always tired, dealt with depression in several periods of my life, incredibly fast heart rate while pregnant (240 bpm and on beta blockers), fluctuating weight… etc. My blood has been tested several times and always came back normal.

    Last month I was driving home and felt a lump on my neck. When I could see it bulging from my neck in the mirror i became very concerned. I saw a doctor immediately and had an ultra sound done. The results were that I had a couple cysts on my thyroid. My doctor was not concerned but I made him refer me to an endocrinologist. I just saw this doctor last week. She did another ultrasound on me and said that I have a large fluid filled cyst on my left lobe, 2 smaller ones on my right and my thyroid is enlarged. She sent me for blood work for my thyroid levels and antibodies. I was called today to say the blood work was “benign” (what in the heck does that mean!?!) She wants me to come in to get a biopsy.

    Last week she said that she was not concerned about cancer but this week she wants a biopsy. Can they detect anything else besides cancer by doing a biopsy?? Is she just being extra cautious? Your story sounds so similar to mine and I am the same age (almost 30). Just wondering if this means anything to you and what you would suggest. I am being an advocate for my own health but no one seems to have answers for me.

  38. I really thank you for your story. My 24 year old autistic son was diagnosed with papillary cancer in July. He changed doctors and it was found by the new internal medicine doc. At first , we were told it benign because it was a “hot nodule”, but pathology showed cancer. It has been very challenging because he is non verbal and autistic. He is scheduled for RAI treatment. I cry and pray almost every night that he handles being mostly alone in a room.

  39. Thanks for sharing your story! It was mentioned the doctor said it’s the single nodules you have to worry about – I was diagnosed with Hashimoto’s as a teenager and my mom had thyroid cancer and this past January an ultrasound showed I had a new nodule note previously seen that was 8x8x6mm with no other nodules present and inflammatory lymph nodes were seen. My PCP referred me to an endocrinologist and the first available appointment I could get was with the most horrible quack ever (my husband was with me as my witness!). She refused to treat me and said that I could live with thyroid cancer if it was indeed cancer and they would find it on an autopsy. Yet, she wanted me to come back in three weeks. I asked her if there was anything I shouldn’t be eating and she said no. I did not go back. My symptoms have only gotten worse since and include severe fatigue, a constant sore throat, feeling of pressure in my throat, IBS symptoms, geographic tongue, depression, anxiety, sleeplessness, trouble falling asleep, dark spots under my eyes, headaches sometimes so severe light hurts my eyes, joint and muscle pains (feels like the flu), chest pains, shaking hands, scratchy voice especially in the morning, and a feeling of being totally stressed out all the time. PLUS, my inflammation marker was 42, my white blood cells were low and my platelets were low. TSH was the only thyroid test done and that’s ALWAYS been “normal”. I’ve done a lot of research and I’m thankful that I found this page! Even my husband has said to me it’s all in my head. It’s not in my head. I really feel unwell and I feel like something is not right. I made an appointment with my PCP which unfortunately isn’t until December 4 to follow up and an appointment with a new endocrinologist which is not until March 2015 because they were booked up.

    • Wow Lisa….you are certainly going through a lot and you found the right website/community to help you learn more about your disease and symptoms. Never let anyone whether family, friend or professional to excuse your aliments and symptoms. You are the only one who is in control of your well-being and you need to be persistent and assertive. Demand the correct blood tests which you can find all that info here on Hypothyroidmom.com. Don’t stop until you find the right medical practitioner who wants to get down to the bottom of it all with you, especially since there is history of thyroid cancer in your family. Join the newsletter list here! Best of luck to you and keep us posted!

  40. Hi Ladies… as I sit up tonight, so worried about my rt thyroid removal tomorrow, I cant help but read all your stories and know I am doing the right thing. I have had this 5cm goiter for 10+ years and after 2nd biopsy came back inconclusive, I decided to see an endocrine surgeon. She immediately noticed my trachea was deviated to the left and my told me it needs to come out. I am so nervous about the “C” word , the scar, and about being on synthyroid forever. I hope to find a site to talk to some of you when I find out what happens tomorrow. Hugs to you all!

  41. Hi, yall. Everyone’s symptoms sound so much like what I have been going through for four years. I have had three u/s in three years. The doc always says,” well there are more, but as long as they are clear, we don’t need to!doanything.” For the last three months, I have this cough that drives my husband nuts. It is sporadic, I can’t track it to any specific source, other than, in the past this happens and I put it down to more cysts on my thyroid. That is what the docs say. Also, I am battling Rheumatoid Arthrits. I can’t take NSAIDs, My face swells and my stomach gets very aggitated. I am afraid to take RA meds, as they can cause cancer as there is so much cancer in my family. I guess I just ned to get another u/s. Yes, I am a little nervous, now, after reading everyone’s stories. God bless al!of “Butterfly Angels.” Do my symptoms resemble anyone elses?

  42. Your article inspired me to seek help in ER last night. I have only been home an hour and have to do an emergency ultrasound tomorrow or Tuesday. I have been losing my voice over a month after “being sick” for many months after my thyroid started swelling.

    Thank you for your article. After 2 months putting off getting help this was just the push I needed. Most sites suggested I just had regular swollen glands. Since I have no health insurance I had no where to turn except Internet advice.

    • All the best to you April for your testing. When something doesn’t feel right with your body always listen. I’m a real believer that our body whispers warnings when something is not right.

  43. Mirandaloo16 says:

    I’m filled with emotion after reading this incredible story. It hits me so close to home, and really makes me pray for an answer very soon.
    In March of last year things began to change. I was already overweight but I suddenly started gaining weight without eating, I felt like I could literally feel the weight being added to my body, I now have a very fat back (without a butt) and a very round face. I became very fatigued all the time, before then I loved working out but now that made me feel like passing out I was so exhausted. The strangest change to me at the time was my voice was getting scratchy, but then for a few days it would be normal so I thought nothing of it. Well I began nursing school in July and by November I finally realized something wasn’t right. I was having horrible migraines, boughts of high blood pressure, always exhausted, and barely a voice left. I also had gained extensive pain and pressure in my neck. As well as a large hard mass under my chin. Most of that mass, which turned out to be a swollen llymph node, went away with antibiotics. But my voice didn’t change and my previous symptoms only got worse. I was seen by an ENT who found and removed a polyp on my vocal cords. My voice still gets hoarse now and I have all the other symptoms. I had a CT scan which showed nodules on my thyroid and my thyroid was enlarged. After an ultrasound, they found :on the left side I have 3 cysts and a solid nodule, while on the right side I have a large cyst and the lobe is enlarged. I just had more blood work done and a biopsy of the nodule. I don’t understand why, but my lab work came back normal but i know something isn’t right.

    Like you I also have pcos, but I found that out many years ago when I was a teenager. I was also on metformin which allowed me to get pregnant with my son. I hope to be put back on metformin soon.

    I am awaiting answers and hope I get help sooner rather than later. I am a single mom and nursing student and never thought this could happen to me.

    • Mirandaloo16 says:

      I try to follow along on this page as much as I can. So it’s been a month since my first appointment with an Endocrinologist. All tests ran on the nodule cam back benign, which is great news. The Endo said she wants to just watch and wait for 6 months.

      I was not completely ok with this decision, but I am not doctor and figured she knew best.

      Well yesterday i went to my ENT for a follow-up from my polyp vocal cord removal surgery in December. We talked about my TMJ pain and neck pain and the fact that my voice still gets hoarse. As I mentioned these things to him, became worriesome, so he pulled up CT scan and thyroid ultrasound so he could see what was going on. He said as a surgeon that removes thyroids for an endocrinologist he does not like the way my thyroid looks. He said the fact that my right side of my thyroid doubled in size in two months is a huge red flag. Then he said I am a perfect candidate to have a thyroidectamy to improve prognosis and symptoms related to my thyroid. So i went home feeling kind of better, as I left he said he was going to give me a referral to see the endocrinologist he works with for a second opinion, which i thought would be just a regular referral.
      By the time i drove home, literally pulling in the driveway the endocrinologist office calls me saying my ENT put in an emergency referral for me to be seen and the endo has looked at my CT scans and is concerned and would like to see me ASAP. So I go to see them in the morning. I feel like i am more nervous now going to this appointment knowing what they are going to see then I was when I was completely clueless.

  44. Annie Bice says:

    Hello!

    I’m 19 years old and I was just diagnosed with Hypothyroidism. Your website has been super helpful in getting me the information I need and support I so desperately wanted!

    I go see a specialist next week (found from the Top Thyroid Doctor Directory) and I’m so hopeful that I might be getting answers and the right treatment. I think I’m going to request taking Armour! I’ve read so many great things about it.

    I have a question, though. What does sudden neck pain and swollen neck mean? Could it be just something benign and NOT cancer? Also, how do I find out if I have any food sensitives? Do I just log my food and try out different things?

    • I would think the main reason for a swollen neck means that you have the beginning of what is known as a goiter which is when the thyroid swells. There are a number of things that could cause it to as well but it doesn’t mean you have cancer. Be sure to address this with the doctor you will be seeing as well as the food allergies. Definitely keep a food log but I would assume that you would need some type of allergy test done.
      You are so young! And lucky to have found this page now rather than later! Don’t let any doctor dismiss any symptoms that you are having, ok? You have a thyroid journey ahead of you and it is important that you stay on top of your thyroid health. Be well Annie!

  45. I have a “mass” as they call it on my thyroid and my gyno felt and found it as well I have has a few ultra sounds on it every 6 months but haven’t been seen for it now in 9 months my doctor said my levels are a tiny bit high but nothing major now my throat hurts to swallow I fill like I’ve had strep for 4 months and I know it’s not, my mass gets bigger w each ultrasound what should I do. My doctor doesn’t seemed to be concerned about it. U can email me. [email protected]. thank u

  46. Your story really hit home for me. Almost exactly a year ago (Jan 30th), a very similar thing happened to me. I had been being followed for several nodules on the right side of my thyroid. One in particular had tripled in size in about 3-4 months and was so large that I could no longer swallow without gagging, so my endo at Brigham and Women’s in Boston finally decided it was time to go ahead with partial thyroidectomy. I had previously had a negative biopsy so they thought nothing of it. I had the partial, came out and a couple days later found out that it was cancer and was sent back for a second surgery to have the rest of my thyroid removed after just having recovered from my partial thyroidectomy. During the second surgery there was damage to my parathyroid so I’m now dealing with low calcium issues and have had two fractures from issues that should not have caused any bone damage. It’s been quite a journey that’s for sure. I’m so glad to have found an online community of people who are so supportive.

  47. I am going for a partial, right side for suspected cancer. I have been on synthroid since 2009, stabilizing at .112, blood work does look good, but I’m an emotion bag of goo! My husband has been Heaven sent, but I think he is reaching his limitations. Family members avoid me. I feel very isolated and alone, depressed. My goal was to quit smoking and get exercising, but I feel hopeless, which leads to me smoking more. Gotta say I am scared!

  48. I had half my thyroid removed when I was 31. I had just had a baby five months before and the nodule I had had just changed tempeture .the lab tech called a doctor over during the ultrasound who asked my age…he said, such a shame, to die so young…I was really freaked out when I saw my dr. It turns out that they didn’t find cancer, but by changing temp, they said it was going into cancer.. I did alright with meds ,( my other side is not functioning ..) till menopause … I had 10+ years of being unwell… Thankfully I’m coming out of that now.. Bless you and I hope you feel well

  49. I single nodule on my right thyroid was just found during a routine screen via an ultrasound. I have never seen an endocrinologist. I don’t know when I will get in. My adrenals are bad as I had a complete hysterectomy 8 years ago even though I am on hormone therapy I have never been balanced. To add to this…they also found a small mass on my right breast…UGH

  50. THANK YOU FOR THIS. I am 32 years old with 2 young boys. I am starting my thyroid journey for the second time. Being diagnosed at the age of 20 with thyroidies as large as “golf balls” which were found to be none cancerous. Now at 32 with my hair falling out (this was my true motivation to go back to the Dr), mood swings, no real tolerance for my boys, weight gain among a very long list, and an extreme menstrual cycle; I am determined to see this through. Your story empowers me, beyond words, to face this COMPLETELY with acceptance and perseverance. THANK YOU

  51. I’m so sorry you didn’t get a chance to let your thyroid go before they took it out. I have always been anti surgery, until I had to have a c-section with my first. I find it hard just to “roll with the punches” I need time to ask questions, determin what I want to do and accept/grieve. I live in Canada. My Dr sent me to an endrochronologist as soon as we couldn’t find a reason for my sleeplessness & moodiness. Did the many tests, and the guideline here is anything over a cm has to be biopsied. They did a terrible job at the local hospital so I went to Toronto. They weren’t 100%sure it was C, but they recomended taking it out, the whole thing, their experience was if there is one spot, then there are others, which turned out to be true. Had a horrible recovery too, I can’t imagine you being on your own, and all the tough things going on in your life too, glad you are doing so much better now, that experience must have given you a ton of strength.
    It took me a year to get my voice back(did a lot of horrible singing) and my family told me I wasn’t myself for at least a year. I am glad they caught it so early, I will never have to worry about that C again. Thank you for sharing your story, I’m grateful for this community.
    Peace & love, natali

  52. Thank you for sharing this! My ENT felt what he thinks is a nodule on my thyroid. Had blood work done last week and all was normal. However, I still had an appointment for an ultrasound, tomorrow. I was thinking about calling and canceling that appointment since the blood work was normal. I read this post on FB as I was getting ready to call and cancel. This definitely changed my mind.

  53. I’m so glad you posted this. I had my thyroid removed about 3 weeks ago because they found cancer. I was also told the recovery would be easy but I’ve never experienced such a difficult recovery in my life. It’s nice to know someone else understands what it’s like. I also have colorectal cancer and have surgery for that in about 3 weeks. I’m praying it’s an easier recovery. Thanks again.

  54. Christine says:

    I am sitting here after reading this and am just at a loss for words. So, I decided to try to write them out. My thyroid journey began about 20 years ago. I was around the same age as Jessie. My sister and her children were killed suddenly and I guess my symptoms of life shutting down really just got put off to grieving.
    But, I knew something else was wrong. I was doing crazy things like putting the iron in the refrigerator. I was in college and was a nursing major. I went from a 4.0 to a 3. That was major. I am not a B or C student. I am the studier. The stay up all night and go over notes type person.
    My PCP chalked it up to depression (of course I was depressed, I hurt all the time, was full of anxiety and could here my heart beating in my ears). Luckily, he decided to do blood work just in case. That was on a Friday. On Monday, I was being scanned. I was diagnosed with Graves. The hyperthyroid autoimmune disorder. I also had to go in for major radioactive iodine treatment. Over the next 15 years, I was radiated 4 times total. Never took any kind of thyroid medicine. The radiation would put my levels to normal and then I would wait for the symptoms to return. Believe or not I was in perfect health before. I weighed around 90 lbs after children (I am a pretty small person). In no time, I weighed over 200 lbs, had type 2 diabetes, high blood pressure, high lipids and was taking so much medicine, looking back it just seems impossible. I had bariatric surgery, lost 20 lbs. I shortly gained it back.
    Two weeks ago today, I was diagnosed with the same thing as Jesse. Because a FNP listened to me. She put me on synthesis and within days, my energy levels were through the roof. I felt like myself again. I feel like myself again. I am now down to 166 lbs. But, I catch any virus or bug that happens to be lurking. I attribute this to the beating my immune system takes.
    Like Jesse, if you know someone with a thyroid problem, don’t take it lightly. I can’t even begin to describe the toll it takes. It’s like waiting to live again and wondering when everyone around you will just throw in the towel. My husband has been great, but I feel that even he is sick of me being sick. Hell, I would be. I am…sick of being sick. Also, sick of grabbing that paste in smile and saying, “feeling better”. Okay, so I wrote it. Sounds depressing, but folks this disease is depressing.

    • You have said exactly how I feel. I was diagnosed with graves at 23. By the time they did a total thyroidectomy it turned to hoshimotos With nodules and goiter.

  55. I lost my thyroid Dec. 2, 2010. I am now 35 and have been battling hypo and hyper from the medication ever since. It has been my nightmare. They assured me it would take 2 months after surgery they would have me back on track. Yet my body has not excepted the replacement medication. 6 drs later not one has been able to help and I have been told by many they were suprised it hasn’t killed me with how bad my hormone levels get. I am a mother of a 7 and 2 yr old. I just had to file for Disability because I cant maintain a job anymore. I lost my dream job that I put myself through college for because of the issues it had caused. Your article really hit close to home for me. Sadly no doctor knows how to really treat the few patients that don’t respond to the meds. Hopefully you have a more successful treatment.

  56. Thank you so much for sharing your story, a story almost identical to my own 12 years ago. My cancer wasn’t detected until after surgery at which time a number of decisions needed to be made quickly before diving straight into I131 treatment a month after surgery.

    All good now, continue to monitor my blood levels and manage the side effects of no thyroid, extremely grateful to have listened to my inner voice instead of the GP who’s sole advice was “its only cosmetic, no need to even think about surgery to remove the goitre”!

  57. It took me over 5 years for someone to take me serious about having something wrong with my thyroid. The Dr. I work check my levels ,they was normal but my right side of my neck was swollen .It had been that way for years.After an ultrasound in Jan ,I had right lobe and the body removed. It turned out I have thyroid cancer. Now I am having left side removed in 2 weeks. Glad to know I am not alone in this

  58. This story was so much like my own. I found a goiter when I was 8 weeks pregnant with my son 10 years ago. It got bigger through the pregnancy and after I had him. I started going to an endocrinologist and we did ultrasounds and everything seemed fine. Except it started to bother me when I would swallow or lay on my back. I decided to ask my endocrinologist about taking it out. She never did a biopsy to test for cancer but she said if it bothered me then sure. She recommended the surgeon and I scheduled the surgery. We arrived at hospital for surgery and my husband and mother waited and when I woke up my husband said that it wasn’t cancerous and it looked good. I went hope and returned to work after 4 days. It had been a week since my surgery and I got a call from the surgeon saying that I had thyroid surgery but atleast we took out your thyroid. I was standing in a room with 8 two year olds. I’m a child care teacher. After being very scared and telling my husband we decided that we would see what I needed to do. The next day I called my endocrinologist and said how I would have to radioactive iodine treatment and be on medicine for the rest of my life. Man the radioactive iodine was awful, terrible headaches, not being able to taste anything for months and not being near my son for 4 days. I had to stop trying to get pregnant and go back on my birth control so I could do the iodine treatment. Finally after all my treatment and I was cleared after 6 months I was able to start trying to get pregnant again. It took another 6 months before we got pregnant but was worth it. I have to get checked and do blood work to see how I’m doing but for the most part it’s good. But I do feel tired and sluggish even on my synthroid. I haven’t felt the same since the goiter started and never know if I will again.

  59. 29 years ago, I went through the same thing. Sadly, I still suffer all the side affects and symptoms. It’s just my “normal”. Just reading these stories, it fills my heart to hear that I’m not alone. That other people feel the same as I do. If you haven’t lived it, you really don’t get it…

  60. After a visit for what a sinus infection, I was sent to have bloodwork and an ultrasound of my thyroid because the right side showed being enlarged. Everything came back normal. It was 6 months later and they decided to do an MRI. All of sudden it was critical for me to see someone because my right thyroid was pushing on my windpipe and there was fear I would have trouble breathing and swallowing. I had no symptoms of anything going on other than post nasal drip and had seen doctors for it. I was never tired or had any other thyroid symptoms showing a problem.
    After to consulting with my ENT specialist, the biopsy proved I have Papillary Thyroid cancer and it has spread elsewhere in my body. My surgeon was incredible in removing my thyroid which the right side was extremely large because of the tumor contained in my thyroid. It was a 7 hour surgery. . My recovery from the surgery was painless and except for getting “winded” when I overdo things, I feel just fine. In the recent weeks, I have taken the radioactive iodine pill which I have been told has shown very good uptake… we are now waiting for the weeks to come to see what the test results show
    It is unknown how long I had the cancer, and without any symptoms how could I know to do anything about it. That is the part that is scary, nothing told me something was wrong.
    I have a great team of doctors that are being pro-active in treating my cancer. My journey has really just begun but I feel confident that I am going to beat this cancer. So I know there are tests and many doctor visits to come but I feel blessed that they are able to help me.

  61. I have TG levels that are extremely high (60% over the norm) with every symptom of thyroid issues. I do not have high antibodies so my Dr. Says I’m fine but I don’t feel it….do you need high antibodies to have thyroid issues??

  62. hello, I have been battling with fatigue muscle weakness for years. Thyroid has been checked for years levels were always good. In 2014 I went to pulmonologist for snoring and trouble breathing.Found out I have obsructive sleep apnea. Though that didnt explain why I had shortness of breath so my pulmonologist sent me for a chest ct and breathing test. The chest ct should I had a 1.9 cm nodule. so my dr sent me for a ultrasound. that showed the 1,9cm solid nodule on my right lobe and one cyst tyoe 6mm on right lobe as well. I also had one on my left lobe 6mm. I had the solid one biopsied and it came back that it had hurthe cell lesions so they did more testing to make sure it wasnt cancer. The dr told me he was going to do ultrasounds every 6 months. I have been having trouble swallowing and my voice has been horse for almost 5 months. I am getting scared that they are over looking something, Any suggestions. I do see my dr this wednesday. I just would like some input and any advice on questions I should ask. Thank you so much.

  63. I went to an ENT for fluid in my ears. He said that any other problems I had were trumped by the lump in my thyroid. I didn’t even know I had a lump. He said he could see and feel it. He recommended an ultrasound & biopsy on Tuesday. That was not how I pictured my appointment going. I do have hoarseness in my voice and the right side of my neck is swollen and hard. I had been noticing it more in the last few months, but how often does someone actually look at their throat when they swallow? I will be paying a lot more attention over the next 4 days until I have my biopsy.

    Thank you for this writing. I’m glad to have found similar stories. I will listen to my guy even if the biopsy results come back negative.

  64. Hi I read the story above, and was amazed with everything that poor girl went through, I’m glad she’s ok now..Well my story is I have an enlarged thyroid diagnosed by an ultrasound,so my internal medicine physician ordered a TSH test (blood work) received the results today and my thyroid is within normal limits. Now I’m back to square one enlarged thyroid pain, dining in my ear, I don’t feel well , no energy, no appetite at times I’m so miserable. I live in a somewhat rural area my doctor is about 20 miles away, I don’t know what to do next ,anybody have some suggestions or advise. I would so deeply appreciate it so much

    • Please take time to read my post on Feb. 5th. I too had an enlarged thyroid and all my tests came back normal for my thyroid but the right side was enlarged. I had no symptoms other than post nasal drip. 4 months later an MRI showed I had thyroid cancer and the enlargement was pushing on my windpipe. I have had surgery and am currently under treatment but it is scary that you know something is wrong and they can’t find it. Perhaps an MRI would give you some answers.

  65. I just had an ultrasound to find out what the nodules they found are. They found accidentally while doing a CT scan of my neck as I’ve had left side neck pain (the pain starts at just little below and behind the ear and radiates down.) for almost 6 months with no break. I’ve had the nodules for over 5 years, sometimes the area of my thyroid is so sore, if I touch it, it moves to the other side and there was a a sound like cartridge being crunched. I mentioned it to doctors, several times and they ignored it. I have mentioned that I’m suddenly becoming confused. I’m 34 and I can be driving and suddenly, I am wondering if i’m driving on the right side of the road, I have been driving for 23 years but I suddenly didn’t know. There’s been many of these spells of confusion in the last 6 months, and my speech is terrible, I’m saying such things as “I have folded the clothes” instead of “I have chopped the vegetables” and all along I was thinking chopped the vegetables. I have said good night in stead of good morning, there is so many that it’s a running joke within the family now, adding new names to things like clothes being Broush, I have mental blanks, I’m talking and then suddenly, I don’t know what i was talking about and i can’t bring it back up. It’s all started happening with the constant bruising neck pain. There is from what my friend could see on the ultrasound two nodules that was marked both at 4cms. I asked the technician but he wouldn’t say, he said to refer to my doctor. Now something is telling me, there is something wrong with my brain, something that has been escalating over 6 months. I have Anxiety and depression and my care for living has gone. I am not concerned about what these nodules are, and that scares me because I have three children and not too long ago, I loved life, I loved socializing. Now I hide in the house at every chance I can. My sleeping patterns keep changing, sometimes I’m wide awake until dawn and require only a couple hours or sleep for weeks, and then for weeks I need 8 hours at least and still so tired, and I get so down on myself, negative thoughts are almost constant… I just can’t function at all. I wake up some days to my mouth and throat burning, and voice is cracking. I can’t swallow without there being a clunk that makes swallowing pills difficult, My right hand tingles, but thankfully i don’t’ wake up with it feeling like it’s burning as much anymore. My neck sounds like there is pop rocks, sand and squishy stuff in it when I move it, My shoulder blades crack constantly, My knees, ankles and thumbs are in pain. All blood tests came back just fine. No autoimmune problems from the ANA test and the rheumatoid factor etc, no nerve damage. I asked for physio and the doctors holding off until the results come back on the ultrasound. I don’t know what’s going on and the doctor seems to be riding with what ever comes along. I want my life back. I want to be able to wake up and feel alive again, I want to be able to speak to people without mixing words ups or drawing a blank.. I want my memory back, and the confusion to stop. I want to be able to turn my head without the sounds and pain, and swallow without feeling like something is blocking my pipes; but most of all. I want the doctors to be more proactive in getting to the bottom of the problems. I also have High Androgens levels and there has been no investigation to why the levels were as high as a males. It seems without a large amount of money you can’t get any real answers. Life has started to feel like a never ending walk along a hot tarmac road with no end in sight, just keep walking and walking and no closer to anything being easier, and I don’t know many times lately i have this mind set.. “I’m getting off at the first exit to show up”

  66. My grandmother had Hypothyroidism I belueve my mother has issues with it as well. I think some women 20+ years ago were diagnosed as bipolar when it was a thyroid issue. My doctor keeps telling me my thyroud is fine or welcome to middle age and menopause. I am not being heard and it is very frustrating. This information is going to help me advocate for myself. Thank you…

  67. You get the BS story that it’s just one opertion, radioactive iodine, and a pill everyday. Nobody tells you the truth of the horrible emotional side effects, like severe mood swings and very bad depression. My so-called friend thought it was basically no big deal because it wasn’t breast cancer. Sometimes even your friends are truly stupid and unsupportive. Lucky to have a great mom, sister and husband. If she had one day like I’ve had, she’d get rid of her BS stay positive crap that she uses, so she doesn’t have to hear anyone.

  68. Grateful for supportive people, but a lifelong friend tried to make me feel guilty because I had the “good cancer,” and that a coworker comes to work with a smile on her face after having had breast cancer. Nobody gets the severe depression, anxiety and mood swings you suffer from losing your thyroid. I only wish this idiot “friend,” of mine would just disappear from my life before I tell her to go screw off. This is by no means easy, and if people who supposedly loved you would take the time to read about it, they might get it. Unfortunately, some people are just too busy to be a friend.

  69. I am so happy i found your story thank you for sharing it i have a question maybe a couple this is not about me but my mom i am trying to get some understanding of all this be4 she my mom makes me lose my mind because she NEVER has a positive attitude about herself when it comes too Dr. And testing she had uterine cancer about 8 years ago and has been caner free since thanks to GOD n prayers recently she had blood work done it came back high levels with some low levels then they sent her 4 ultrasound 4 those reasons found nodules (several) on both sides put her on meds then yesterday they did another ultrasound and nodules have grown bigger in 4/6 months since last ULTRASOUND i just can’t wait for dr. I have done alot of reading on this and so many things are the same but different with everyone but does this mean CANCER or does it mean there is a CHANCE it its not please anyone that can give me sum sort of understanding dont hesitate thanks for ur time and GOD bless evry1

  70. Brittany W says:

    Thank you for sharing your experience. I am glad, they finally caught it. Unfortunately, your story scares me. I had a nodule found over a year ago. I had an ultrasound and they came back with “well let’s just watch it” my blood work levels come back 100% normal for everything with my thyroid. I see an endocrinologist next month, I have to admit I put it off for a long time, avoiding that voice in my head that keeps telling me something is very wrong. I have felt like something has been stuck in my throat for weeks and let’s not get started on the mood swings and menstrual issues I have been having. Now I am definitely going to push for the doctors to do something.

  71. jennifer says:

    i was diagnosed with hypothryoidism back in 2007 where they had found a goiter in my throat. I have been on a sinthroyd ever since all my blood work always comes back normal. till recently i have had a hard time swallowing medications. I went for a ultrasound which determend that i needed to have a biopsy done. while i was there for the biopsy the endocrine surgeon told me that the nodule is less than a centimeter he wasnt going to do the biopsy because of how small it is . But he said what is around the thyroid is what makes him believe that its cancerous. I find out today if it is cancerous or not. I have been dealing with severe neck pain all the way to the back of my neck i cant turn my head it hurts so bad and sore throat for almost 2 weeks i don’t know if this has to do with that or not, but i was told there is only one nodule on my thyroid. any one have any suggestions to this that would help me ease my mind that would be great ! thanks

  72. Hi Jessie,
    I first want to say that this popped up when I needed it the most. I also have hosimotos with 4 tumors 2 on each side. I’m 29 and it’s destroying my life. If you can email me and or give me some guidance I would really appreciate it. I just don’t want to lose hope. I am trying gofundme under RandiFund to try to get treatments. It’s expensive and I’m don’t feel anything especially how I feel about It inside …. I feel it went numb

  73. Hi Jessie,
    I first want to say that this popped up when I needed it the most. I also have hosimotos with 4 tumors 2 on each side. I’m 29 and it’s destroying my life. If you can email me and or give me some guidance I would really appreciate it. I just don’t want to lose hope. I am trying gofundme under RandiFund to try to get treatments. It’s expensive and I’m don’t feel anything especially how I feel about It inside …. I feel it went numb

  74. Hi Jessie,
    I first want to say that this popped up when I needed it the most. I also have hosimotos with 4 tumors 2 on each side. I’m 29 and it’s destroying my life. If you can email me and or give me some guidance I would really appreciate it. I just don’t want to lose hope. I am trying gofundme under RandiFund to try to get treatments. It’s expensive and I’m don’t feel anything especially how I feel about It inside …. I feel it went numb

  75. Hi Jessie,
    I first want to say that this popped up when I needed it the most. I also have hosimotos with 4 tumors 2 on each side. I’m 29 and it’s destroying my life. If you can email me and or give me some guidance I would really appreciate it. I just don’t want to lose hope. I am trying gofundme under RandiFund to try to get treatments. It’s expensive and I’m don’t feel anything especially how I feel about It inside …. I feel it went numb

  76. I can’t even tell you how much this touched me! I’m so tired of doctors not listening to us and our bodies, I fought over and over before my doctor would send me to see a specialist for my thyroid, because my results came back “normal” each time. Once she finally sent me over it was because I told her it runs in our family and once I seen the specialist she tells me even though the numbers say “normal” it may not be my “normal” and we found out I was in fact hypo! But my concern for a very long time has been the soreness in my throat everytime I swallow I always feel there’s something there and it’s sore and kinda swollen as well as I’ve always felt my voice has been very horse and it’s bothered me and felt like it could be some kind of cancer because I’ve felt knots but they act like it’s normal, but when she has me do the whole head back and swallow I can barley do it when she’s holding my throat to feel now after reading this I have a follow up and I feel like I should really push the issue because my gut has always felt there’s more and it’s been getting worse as months/yrs has went on. My fatigue over part 2 yrs has been so bad, now bruising and hair loss feeling sick barley making it through the day major mood swings on medication for migraine because I was almost going blind on one side I’ve felt so alone like no one understand, they tell me get up and do something and you’ll get energy, I use to do 3 workout classes a day plus the gym now I’m lucky to make it through a work day get my kids and do laundry before I hit couch and wanna pass out feel like I’m loosing my life at 34 and being a single mom of two I feel so bad for my kids.. I’m starting to feel so thirsty and crave nothing but junk food and a lot of infections which I’m wanting to relate to diabetes now too, but last test said anemic but iron pills make me sick when I take them so tired of being tired, really hope and pray I can get all this figured out, part of me wants to just travel up and see the doctor she seen who did her surgery to do testing just to rule out for 100% just to make sure since what happened to her.. So glad God lead me to this article!

  77. annette garcia says:

    I DONT KNOW WHAT TO DO IS THERE ANYBODY OUT THERE, WHERE THEIR DOCTOR TOLD THEM THEIR LABS ARE NORMAL BUT ONE IT WAS THE CALCIUM I BELIEVE ANYWAY HE SAYS YOU HAVE SOME NODULES ON YOUR THYROID ONE LOOKS LIKE IT COULD BE NEOPLASTIC DISEASE ,HOWEVER 2 ARE TOO SMALL TO A BIOPSY AND THE ONE THAT WE THINK IS CANCER WELL MAYBE YOU CAN TAKE SOME REAL HIGH DOSES OF VITAMIN D AND SEE IF THOSE NUMBERS COME DOWN, I’M FLABBERGASTED BY HIS HYPOTHESIS ONLY BECAUSE I’VE MENTIONED TO HIM I CANNOT SWALLOW MEDS I FEEL SOMETHING IN MY THROAT WHERE SOMETIMES DEPENDING WHAT IT IS GETS STUCK NOT TO MENTION THE PAIN. I’M A LITTLE CONCERNED I;M STARTING TO FEEL MORE BUMPS AND LUMPS ALL THROUGHOUT MY NECK BY MY EARS WHAT DO I DO TO MAKE THEM DO SOMETHING TO HELP ME I’M AT A LOSS HERE.THANKS!!!!

    • Have u had any nuclear scans ?! Id ask for one and id ask to see a Endocrinologist also make sure when you have bloods that they do t3 & t4 aswell regardless of tsh levels…. Ask for antibody testing for hashimotos or greaves and listen to your self dont take no for an answer if you dont feel its right xo

  78. It just hits home how in tune we are with out own bodies that we know when something isnt right, I had a total thyroidectomy on Nov 3 2014… My levels were still constantly high and Dr’s changed my meds every other week until one specialist at the hospital finally decided I wasnt crazy that yes something was amiss and nuclear scan showed that a huge chunk of my thyroid had been left behind, accidentally !! And now i have the choice, more surgery or radioactive iodine treatment… Im confused i dont know whats the best option right now ? I have felt swollen and i can feel a lump in my neck that sometimes gets to the point i feel as though im choking… I still keep getting told its just swelling, it will be 6 mnths in 2 days and impretty sure the swelling should have gone…. Im losing so much hair my skin is bad one day ok the next, my weight omg i dont even know where to start, mood swings erratic heart, hormones everywhere, one minute i want to cry then laugh then scream and then anger then depression…. I really feel that something isnt right besides the fact theres still a chunk of thyroid there…. So do i go more surgery so they can look at it test it see it acknowledge it or do I go radioactive iodine and hope it kills it and theres nothing more sinister at play that goes unnoticed ?!
    Good luck to all of you out there fighting this i havehad issues for 13 yrs now nodules biopsies graeves goitre and hyperthyroidism its the pits and you guys understand exactly how i feel xox

  79. My 15 year old daughter had a sudden lump appear in her neck….ultrasound said it was a nodule and she has this removed…they said it was benign…she also has a multinodule google on the other side…but left this in….she is very sick all the time…sleeps lot..freezing cold hands problems with her periods…now we are awaiting a kidney specialist as her levels are high. She is due another scan this week as the endocrinologist wants it done before he even sees her! Getting a bit peeved with doctors not listening….ths level above normal….

    • Sally, I’m sorry to hear what your daughter has been going through. Sounds like she may not be optimally treated by those symptoms. Get her multiple medical opinions.

  80. Tabatha says:

    I was diagnosed with hypothyroidism about a year ago and just made an appointment with my thyroid doctor (which has changed since other one move) about upping my dose since I’ve been on 50 for a yr and I’ve been sooooo tired and have no ability to do anything through out the day, my origanal thyroid doctor turned my med refills over to my regular doctor which I called to see about upping the dose but of course she wanted to run tests first and she says “oh your levels are normal” (which this is what she always said the 3 other times before I demanded seeing a specialist and then finding out in fact I had hypo) but here we go again “there normal” instead she says I am anemic and wants to put me on iron pills, so to amuse her I say ok, apparently I need high dose twice a day, but only did it for like a week and it made me so sick and couldn’t hardley eat so I stopped, plus I didn’t see any change in the coldness or energy at all, so that’s when I looked up my specialist number and called and scheduled appt with new doctor which I’m waiting for still which is couple weeks out still. Now about a month later I get out of a shower and notice my skin all supper blotchy red and hot and it feel super weird, almost like if you took the ends of your hair and poked your skin over and over then will itch like if you were out rolling in grass, but it comes and goes my skin will be super hot like a sun burn then sometimes it’ll look like a heat rash I guess then it’ll go away and itch like I rolled in grass. It’s on my belly and sides then upper thighs sometimes arms feel itchy too and back but main areas are belly onto sides and then upper thighs feel super hot and irritated, my lower shines have bruises all over them and feet feel swollen and tingle if I rest my arms any higher then at waist feels like circulation is getting cut off to hands then they tingle then idk if it has any thing to do with it but eating wise I use to be a super healthy eater but lately I’ve been craving nothing but junk which normally would make me sick but it’s all I want then other days not hungry at all and it’s frustrating and constantly thirsty like I can’t get enough and need to pee is constant, have had tons of yeast infections and periods have gotten so heavy and longer, my stomach evey day feels like I look like I’m 5 months pregnant but scale has only moves like 3 lbs it feels so bloated even when I hit days when I hardly eat it’s so frustrating and the fact that my regular doctor won’t listen to me is sooo annoying and idk if any of this is new syptoms of thyroid issues or issues of something else, or just age related? Idk I’m just so tired of being tired and not feeling like myself, any type of help would be appriciated.

  81. Shelly Groves says:

    Hi – I have been where you are. April 1996 was when I had my surgery. 19 years cancer free. It has been a long haul. I am sorry to say you will never be the way you were before. I was never a cynical person. Now that seems to be all I am. I am finding it hard to keep and make friends. I think with my mood swings it is very hard for people to be near me. The palpitations are the worst. I thank God everyday for my wonderful husband. He has been my rock and has put up with more than most would. He remembers me the way I used to be. He loves me and that I am profoundly sure of. It does get better. Took about 2 years for me to get used to the new me. Not everyone has the same problems. I have a friend who went through it too. She is very frail now as her para thyroid was nicked. She is still the sweet person she was before, but she get sick easily. A male friend had it as well. He says he feels just fine and has no lingering symptoms. I have another friend who is getting ready for the surgery and the radioactive treatment. So many of us. Take care.

  82. Amanda S. says:

    Thank you all for your comments, as reading them has sure helped! Doctors found a spot on my lung and 6 weeks later, upon another CT scan, they discovered one on my thyroid. My blood levels were fine they said. ? This was October last year and I haven’t been checked since. Issues with our medical insurance has left me without coverage until October. My body is changing. My pretty feet are a nightmare! They went from soft to severely cracked and very painful and I don’t know why. I’m not healing. If I get the smallest of scabs, they take forever to heal. I’m scared. I’m scared to get checked to find out the worst and have no way to get treated. So I wait. Do any of you know if these signs point to…..my worst fear….cancer? Any advice would be a blessing. Thanks so much!

  83. I HAD MY THYROID TAKEN OUT COMPLETELY . THE CANCER WAS ON BOTH SIDES OF MY THYROID. I HAD THE RADIOACTIVE IODINE IN SEPTERMBER.IT SEEMS LIKE A LOT MORE WOMEN GET IT THEN MEN.IT TOOK THE DR S A WHILE TO FIND NOT I HAD THYROID CANCER.MY DR IS WORKING WITH ME ON THYOID MEDICATION MY BODY IS NOT RIGHT I HAVE TO FIND A NEW NORMAL AND GO ON.

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