The Silent Disease

Thyroid Cancer

9 weeks after a full thyroidectomy

Written by Jessie L O’Donnell

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

Waited? 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. Her website is Jessie Lee Photography.

READ NEXT: HOW TO DO A SELF THYROID NECK CHECK

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About Dana Trentini

Dana Trentini founded Hypothyroid Mom October 2012 in memory of the unborn baby she lost to hypothyroidism. This is for informational purposes only and should not be considered a substitute for consulting your physician regarding medical advice pertaining to your health. Hypothyroid Mom includes affiliate links including the Amazon Services LLC Associates Program. Connect with Dana on Google+

Comments

  1. Cottagemom says:

    Wow, don’t know whether to be happy that so many others have experienced similar things to me or sad. I have spent 5 years trying to get a diagnoses. Today finally got a referral to an Endocrinologist as an ultrasound shows nodules and I have persistent hypo symptoms even though my family doctor keeps saying thyroid levels are “normal”. I wake up every night feeling like I am choking. For everyone else who is getting no where with their doctor, KEEP TRYING. Get a second or third opinion. Only you can advocate for you.

  2. Marcie Conant says:

    I,m repeatedly told that my ultrasounds, biopsies and blood tests are normal. In the meantime, I still have symptoms plus nodules on my thyroid gland. I,m told that as long as there is no change in the nodules that I won,t be prescribed any meds or receive treatment of any kind…just an ultrasound once a year to make sure that the nodules don,t change. Who can I get to advocate for me?

  3. I as well as my primary care doctor are confused about my thyroid test results. My thyroid panel was normal, no antibodies, etc., yet my thyroid ultrasound showed an multinodular goiter with results mentioning possible Hashimoto’s. How can I have Hashimoto’s without the antibodies? I’ve had in the back of my head all this time that when I got my raw genome data (I did one of those 23andme tests and found another site to interpret it all), I have some genes that puts me at a higher risk for thyroid cancer. My mother had hypothyroidism and had hers fully removed. My problems started back in my eighth month of pregnancy last year. Suddenly, I felt dizzy with a lot of disequilibrium, sort of like being very drunk. It never went away and got worse throughout the rest of pregnancy. I was holding onto walls and furniture to get around. Long story short, I have a lot of Meniere’s Disease-like symptoms (can be linked to thyroid), but no diagnosis yet. I still have disequilibrium and vertigo, but not as bad as during pregnancy. The true vertigo is triggered by hormones, weather, and loud sounds, and my doctor said the hormonal part could be my thyroid because I get my worst vertigo attacks three days or within a week before my cycle. I haven’t lost any weight since pregnancy despite diet and exercise, and I had my baby almost seven months ago. I never had weight problems before, so again, I thought of my thyroid. After today’s results, I’m confused but will see an endocrinologist. I’d like to insist on biopsies of the nodules just to make sure there isn’t cancer (at least in the ones that are visible), but I don’t have the major symptoms such as a lot of pain yet. I may only seem a tad hoarse here and there or feel like my neck is tight. My neck does seem larger than before pregnancy, but I’m larger in general now. . .but I feel like something is wrong. Weight was never a problem before, nor was losing a pound or two here and there. I try to be positive and happy and act like the weight doesn’t bother me, but I posted a picture of my son and I online recently and one person commented that my son was cute but I was fat. To be honest, that hurt, especially because I have no control over it. Thankfully my other friends stepped in to my defense, but it still hurt. I just want to make sure I don’t have cancer because I want to be here to see my son grow up as he means the world to me. I’ve had PCOS that resulted in infertility and four or five miscarriages, and it took eight years to finally have my son. While I know it would be hard, especially after reading your post, I’d be happy to give up my thyroid in order to get better and make sure I stay with my son. I also live in the South Florida area in Palm Beach County. Are there any good endocrinologists down here that you’ve found since your experience? I want someone proactive that believes in a lot of testing. The other thing that scares me is that I’ve read that it used to be thought that only one thyroid nodule was more suspicious of being cancerous than someone with multiple nodules, but studies have since reversed that. Now it’s those who have multiple thyroid nodules that have a higher chance of having thyroid cancer, even as many as 1 in 5 people, though the overall cancer rate for it is about 5% or so. Any advice? Thank you!

    • How are you feeling now? I’m having some of your symptoms and I have an appointment for my ultrasound.

  4. I’m 25, will be turning 26 in June. Two years ago my doctor did some books work just for regular checkup since it was my first time actually going to a doctor, just to go and get a checkup. Blood tests came back and he told me my blood levels (I don’t even know what kind of tests he ordered) were a bit on the hypothyroidism line and that he wanted to get more testing done because o was so young and he didn’t want me to be on medication at that age.
    Instead of going to to the lab and get the tests done I did nothing. I didn’t think it was anything serious and he never actually inquire about it. I never went back because I had “no time” with college and work.
    A year later I was assigned a different doctor and by this time I was feeling some of the hypo symptoms like mood swings, loss of hair, acne, constipation, sudden weight gain/loss, brain fog, etc. I explained to my new doctor that I wanted to get my thyroid check and he was a total ass. He asked me if I had dry skin, constipation and if I felt tired. I didn’t have dry skin so I said no to that but everything else was a yes. He seemed so bothered by me demanding to get an order for blood work but he still did it. Now again, I’d didn’t go get the test done because I was going to be moving out of state in a month and he told me to schedule an appointment a month after so I just didn’t do anything about it.

    In Kentucky I attended college and was working overnight. I could feel how I was becoming more and more symptomatic. Now I was starting to feel very depressed for no reason, cried for no reason. Because very annoyed for the smallest things on top of my terrible mood already and all other symptoms that I mentioned above, except that this time there was something that truly alarmed me, my neck. It hurt so bad that sometimes is just be minding my own business and I’d get a very sharp pain and I’d even hear a crack. I had hurt my voice singing (im definitely no professional singer) a few months prior to the swelling and sharp pains and thought maybe it was due to that. I started looking at YouTube videos to see if I could maybe check my own thyroid but I had no idea what to feel for.

    Fast forward to 2018, I moved back to California and this time I decided to make an appointment for a thryroid checkup. I got assigned a very caring doctor. I explained to her all my symptoms and she checked my neck and felt a golfsized goiter on the right side of my neck. She told me not to be alarmed because it could be caused by many things. She ordered a full blood test (blood test count?, the th and th3 or whatever they’re called, and hormone levels), and she also referred me for an ultrasound.

    My blood work came back “normal” with only vitamin D deficiency. I felt so destroyed inside. I asked her if I was just lazy and depressed (and a bitch) then since it’s clearlh not my thyroid according to the tests. She said the ultrasound will give us a lot of information but that my symptoms could be caused by the vitamin D deficiency and I was surprised to hear that. I googled it and found out that it mayyy be posible to even feel depressed if vitamin d is low, but it didn’t talk about being moody and loss of hair or acne.

    I went to the ultrasound today and the radiologist seemed alarmed and she kept asking me how long have I been feeling this lump on my neck and if doctors never did anything about it. She took a bunch of photos from my right side so I know she found something, she just didn’t want to tell me. She said she is no doctor and that she would discuss her findings with my doctor and that my doctor will be in touch with me. I don’t know what do expect. I see my doctor in 3 weeks. 🙁

  5. Allyssa C says:

    18 years ago i had half my thyroid removed (Benign tumor), things were ok until 1 year ago. Two new nodules appeared, had one checked and again (Benign tumor) just monitor they say. I am suffering with fatigue, mood swings, weight issues and pain. I feel lost and no idea what to do…. My doctor keeps saying my bloods are ok… HELP!

  6. Damn girl,
    This hit so close to home.
    My neck has been hurting for 4 years. I’ve been waking up in the middle of the night choking for the past year. My dr ordered a sleep study, came back negative for sleep apnea, ordered an ultrasound of my thyroid, found several nodules. They decided not to do a biopsy on the nodules because they are 1cm in size, and they say cancerous nodules are usually bigger than 1cm, so they’re doing nothing even though it feels like I have marbles in my throat. Ugh.

  7. I’m fifteen and I’ve had issues with my thyroid for a few years now. I’ve been a pretty sick kid during my life. Recently I had to go to the ER because my fever spiked up to 105.7 and I had been to the doctor the previous day and they had no clue what was going on with me. My doctor the previous day ordered a CAT scan of my chest and abdomen. I have had so much blood drawn in the past few weeks. So when I was at the ER they said I was fine and I could go home, but I didn’t (still don’t) feel fine. I’ve been back and forth to the doctor. The CAT scan was normal. My WBC was severely low and so were my platelets. Then, I went to the doctor after my mom had spent the entire weekend to get my fever to break, they told my mom to take me back to the ER. While I was at the ER they told my mom best case and worse case scenarios. She was worrying a lot so I started trying to help her relax and not think by making jokes. I’m kind of like Chandler, I use jokes as defense mechanisms. So they took more blood. Then they decided that they needed to admit me to the hospital. I woke up the next morning and all I see is about ten doctors with masks on standing over my bed. They told me I have mono, and that I could go home in a few hours if I could keep fluids down. I went home and fell fast asleep. I always have this difficulty swallowing and I’ve never told a doctor because I felt like they would think I’m making it up just to get something written off as I don’t have to go to school. Sad thing is I actually like my school. Anyways, my mom got my last blood test results back and they said something about my thyroid antibodies being high. So then, a week later I got sent to get more blood drawn. They didn’t test anything to do with my thyroid. Now, I’m coughing and my throat and neck hurts all over. I’m sorry for complaining I just needed to get it out. Maybe it is nothing. Maybe I’m just overreacting.

  8. Thank you for sharing this post!. I came across this page while searching about thyroid problems. I have been having so many issues with my thyroid and they have made my everyday life so miserable. Im 24, have 2 young kids and was never expecting something like this. I went to my dr originally because i kept hearing my heartbeat in my right ear, having thumping headaches on that side as well as dizzy spells that were so bad i have fell from losing my balance and i also told my dr id been feeling some pain in my neck so she decided to do an ultrasound. The ultrasound showeed that i had a nodule on the right side of my thyroid and that side of my thyroid is twice as big as the left side. I had all the bloodwork done and it all came back normal so my dr sends me to an endocrinologist that tells me yea i have a nodule on the right side of my thyroid but my bloodwork is good. Said my dr needs to figure out whats wrong with me because its not my thyroid. I went back to my dr who was very upset because her and i both know it is my thyroid causing this because it is HUGE, it hurts very much, I have moodswings terribly, freeze all the time, and my face swells a lot anymore. I feel and look nothing like myself, ive gained 25 lbs since i had my 2nd child who is now 18 months and no matter what i do i cant lose the weight. And the only medications i take are vitamin D and a prenatal vitamin that i still take because ny hair falls out so i know its not medicine making me gain so much. Some days I feel so depressed i dont even want to eat! I feel so trapped, my relationship has went through a lot because of my mood swings and self consciousness because of my weight gain. I have trued to explain to him i cant help it with the mood swings i just dont feel like myself but we argue a lot now. I cant even play with my kids like i used to anymore becayse i feel so horrible some days and all my Dr can do for me ay this point is give me antidepressants (im not too thrilled with that!) My dr has done everything to find something other than my thyroid thats causing these problems( lots if bloodwork, MRI of my brain, now in waiting to have a ECG of my heart) she’s finally sending me to a different endocrinologist to have it biopsied so I have been praying someone can help me. I miss being the happy mother that I was a year ago! This has changed my life so much and it really is miserable, I really hope this is something doctors become more educated about! And I pray this misery goes away! :/

  9. Mari White says:

    Dana, thank you for sharing. I just cane across this site. I too have been wondering about thyroid. I have multiple nodules which I was told were benign. All blood work is always normal. My voice has suddenly gotten gravely, deep, scratchy. My mood, my fatigue, my leg hair growth , my memory, my everything is screwed up. Lately, my inner voice has been shouting at me to follow up. Thanks to this, I am going to follow up, asap. I am tired of feeling like crap, being told its depression, etc. I would love to have the contact informtion for this doctor in Boston. Thank you. Mari White

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