Radioactive Iodine NOT always necessary for Papillary Thyroid Cancer

Hi All, Sparky here!

Please note that thanks to extensive research regarding Papillary Thyroid Cancer, radioactive iodine (RODI) is not always necessary unless your doctor clearly states otherwise/it looks like the cancer spread to the surrounding lymph nodes. Studies have shown that Papillary Thyroid Cancer is less likely to spread.

Here are some articles to review, and PLEASE discuss this with your doctor. I have been getting a few stories lately where people are prepping for RODI, and I realized I had not brought this up although my doctor mentioned it two years ago. My endrocrinologist is a UCLA professor and is very in touch with the latest research. I’m always hesitant to mention any type of medical “guidance” but there have been enough studies to conclude that radioactive treatment is not always necessary after a thyroidectomy for Papillary Thyroid Cancer.

After my surgery 7 years ago, I chose to NOT do RODI (before all this research came out). I wanted proof that the cancer had spread before I went and did anything that serious. Again, with my doctor’s approval, we chose to wait and see. Then research came out that papillary thyroid cancer is unlikely to metastasize (spread) (and I had a pretty large tumor, too). I’ve been cleared of any cancer (got my blood tested every year for five years, and it is a very slow growing cancer so I wasn’t worried about any alarming growth) and am confident in my decision.

Again, this was my choice and there is a lot of research out there to consider and talk about with your doctors.
Thank you for reading and thank you for being here. <3 On a side note, I'm 7 years thyroid free and doing damn good. If only I could quit the carbs haha

3 Comments

Filed under Papillary, Thyroid Cancer

Today’s theme is: Stay Off Google

The following story is from Steven who had a thyroidectomy as a result of papillary carcinoma. He had his thyroidectomy a week prior to this story, so he has a journey in front of him. SO happy to have this fantastic first chapter in his story, and we hope Steve keeps us all updated!
Love, Sparky

Hello all,

Today’s theme is: Stay Off Google.

My name is Steven, and I am a 27 year old male from Kansas City. Today marks one week since my total thyroidectomy. While I’m sure there will be changes to come, I at least wanted to share my experience so far in an effort to boost morale for other readers. This website helped my mental quite a bit before surgery, so I felt an obligation to do my part to contribute.

On February 27th, 2018, I went into my physician for a standard checkup/physical, due to the fact my longtime physician was retiring soon, and he wanted to see me before then. I have battled with anxiety and depression most of my life, but was almost excited to go in and see him. This is because I had been feeling FANTASTIC. I was happy with my job, happy with my hobbies, happy with my family, etc. It was the best I’ve felt in years. During the physical, he indicated he felt a small lump on my thyroid. He talked to me about the chances it was nothing, but advocated I go get a sonogram the next day at a referred hospital. I left unsettled, frustrated, felt cheated, etc. I felt ZERO symptoms, and didn’t even know what a thyroid did 🙂 . The mind is funny. I left the physician feeling sick and unhealthy, despite 30 minutes prior feeling outstanding. Crazy right?

I went and got a sonogram the next day and again was told it was probably nothing, and 90% are benign. A few days later, I was called back, and the ENT Doctor explained his concern. The odds were stacked against me a bit. Reason being I am 27 and a male and healthy. The first BAD sign was that he saw some calcification in the sonogram. This is often a bad sign. The chances kept getting worse and worse for a “non-issue” nodule. The next step was an FNA Bioposy. If you are nervous about these, don’t be! It takes 25 minutes, and the worst pain you get is the numbing needle. After that, it just feels weird. Not painful. The sensation of having something inside of your neck is strange, but its over quickly.

This brings me to my first point that I’ll tackle later. The waiting around for the results from the bioposy was 10000x worse than hearing the diagnosis, going through the surgery, and recovering. I’m not exaggerating. That week of waiting was far worse on my psyche than anything. This is something to consider. Please God do not do what I did. I started googling every experience ever since the human body was developed. I surfed every message board ever reading horror stories. I blocked out the good ones, and focused on the bad ones. I convinced myself I had cancer days before I was even told there was a suspicion. It did me no good, and if I could go back in time, I would have handled that anxiety much differently.

Moving along, the reports came back as Suspicious for Papillary Carcinoma, and a TT was recommended. My world came to a stop. I defeated all the good odds. My surgery was scheduled for about 10 days later. I tried so hard to get out of it. I could not come to grips that in 2018 a TT was necessary for something “suspicious”. I sought second opinions, and looked at every method possible to keep my thyroid. But the day came closer, and I was forced to accept it.

But let’s move on to the happy stuff… : )

On March 21st, I had my thyroid removed. I was nervous of course. I was in a full gown, with an IV in my arm, being constantly asked what the doctors were doing and what my name was to protect themselves. The doctor asked “Would you like something sedating to relax you?”… If you are asked this, DO IT. It is amazing. Idk what the hell it is, but it rules. Next thing I know, I gave my dad a fist-bump and my mom a kiss, and was wheeled away.

I don’t remember going “under”. I don’t even think they warned me. BOOM! Hours later, I awoke in a strange room with someone handing me a grape popsicle. It was the best treat I’d ever had. I was in ZERO pain. I was still sleepy but realized what was happening. I was told I was being goofy and making nurses laugh, so hopefully I didn’t say anything dumb : ) But please note, I had ZERO pain. That was great of modern medicine to grant me. Soon, I was hanging out in my own room with a TV and buttons for help where I stayed the night. I got woken up at 12 and 4 for vital checks, but that wasn’t bad. I was discharged the next morning with instructions.

So here I am a week later, expecting my life to be miserable. I expected a scar under my chin that would freak everyone out. I expected to be sleepless in pain. I expected to be called back and told they had to go back in. I expected the scar to get infected. I expected to have bouts of anxiety, depression, sickness, headaches, nausea, hair loss, etc. This is because I googled all of this.

HOWEVER, One week later, I feel exactly the same as I did before. Perhaps a tiny bit more tired, but I blame that on staying up late and the mental fatigue following coming off as anesthesia. I was back to work on Monday and came back to supportive and curious coworkers. I don’t blame them. My scar is so far down my neck that you can’t even see it, and my follow up appointment noted it was healing wonderfully. Are there going to be changes in the future? Probably, but I have the full support of medicine and doctors that monitor this stuff. Will my life change? Probably, but was my experience the same as Google told me it would be? No. Not even close.

Moral of the story is please note the positive stories, and catch yourself before falling down the rabbit hole of horror stories. You have NO idea what other medical issues someone is dealing with on top of having their thyroid removed. You are not them, and they are not you. If you google the symptoms, you will convince yourself you have those symptoms.

It’s 2018. Find a trusted and experienced surgeon, recognize your options and resources, take your medicine, and hopefully your first week experience is as good as mine.

Thank you for letting me share, and hang in there!

32 Comments

Filed under Papillary

Mom of 3 with a Multi-Nodular Goiter with Non-Conclusive FNA Results

Gina, Female, Mom of 3
Age: 50
Reason for Thyroidectomy: Multi-Nodular Goiter with Non-Conclusive FNA Results & “Suspicious” Genetic Test Results
2 Weeks Post-Surgery
Orlando, Florida

I am SO thankful for this site after all of the horror stories you read about having a Thyroidectomy and the after affects. My husband reminded me that most posters on the internet are the ones who have had a bad experience and it doesn’t represent all of the good, so, thank you for this site! I’m only 2 weeks out from my surgery, but am feeling good and healing well and hoping to put someone’s mind at ease with my story. 🙂

About three years ago I began feeling a lump and some pain on the left side of my throat. When I would bring it up to my general physician she told me that she didn’t feel anything and it only hurt because I kept touching it. She tested my TSH levels a couple of times a year and they always came back “within normal limits” so nothing was done. I began to have trouble swallowing, was choking when drinking water, and my voice was going hoarse for no reason, which affected my singing voice. I was no longer hot all the time, I’m a bit overweight, and my hair was beginning to fall out. After 3 years of complaining my GP finally said, “Fine, lets get an ultrasound of your thyroid and figure this out once and for all.” When I returned to her office for my results, the look on her face was priceless and she said, “Oh, we need to get you to an Endocrinologist immediately.” I wanted to smack her!! Her office manager called my home that evening to “make sure that I had some referrals to an Endocrinologist and to let them know if I needed any help getting an appointment.” In other words, “we screwed up and we want to cover our behinds”! Needless to say, I made an appointment that week and got right in with the greatest Endocrinologist who immediately ordered another ultrasound and a Fine Needle Biopsy of my two biggest nodules of 1.5cm. The results of my FNA came back inconclusive so they had to repeat it after waiting 6 weeks for the swelling to go down. I spent the whole month of December and Christmas wondering if I had thyroid cancer. It was miserable. This time they encouraged me to also have the genetic testing to determine once and for all if thyroid cancer was a possibility. My biopsy results came back a second time as inconclusive but the genetic testing came back as “suspicious” with a >50% chance that I had the cancer. Because of these results, and the fact that I was riddled with nodules, my doctor recommended a total thyroidectomy. I met with a surgeon and he scheduled the surgery for the next week. Since I am a singer and was concerned about this surgery hurting my voice, the doctor scoped my throat to take a reading of my vocal folds to be able to determine if there was any permanent damage after the surgery.

One thing I do not recommend at this point is to go on Google and look up ANYTHING regarding your surgery!!! I freaked myself completely out and was second guessing the surgery! My husband talked me down and with much praying and support from family and friends I went through with the surgery.

When I awoke from my 3 hour surgery I had an ice pack on my neck and my throat hurt like I had strep throat! They gave me ice chips to suck on and some good pain meds during my overnight stay in the hospital. During the early morning hours I decided to forego the strong pain meds that the doctor had me on because I didn’t like feeling “loopy” and wanted to be able to stay awake so I only took Tylenol. My surgeon opts to glue your neck wound shut instead of stitches and all of the nurses were bragging that he is an artist with this stuff. I was given 2 TUMS to take and sent home because my calcium levels were 9.1, which is apparently good. All I could do at home was lay on the couch and sleep while my family watched TV and talked around me. Eating anything but Jell-O was out of the question because of my throat. I tend to get dehydrated and constipated after surgery so I made sure to drink as much water as I could swallow, which wasn’t a whole lot because of my sore throat.
The next day I felt so much better and began to talk and do some very light head turning exercises a couple of times a day. On day 3 I began to feel a tingling in my arms and hands and around my mouth and was having trouble catching my breath. My husband was diagnosed with the Flu that morning so my teenage daughter had to take me to the E.R. where by the time we arrived, I was hyperventilating and thought I was having a stroke. My hands were all cramped up and I couldn’t move my mouth. They did an EKG and said I was not having a stroke, I was having a panic attack because of the cramping which was caused by low Calcium and Potassium levels. After being given a dose of Ativan they gave me an IV of Calcium and Potassium and I slowly began to feel like myself again. Not sure why my surgeon didn’t put me on Calcium the first day, even though the pathology showed that he had sliced three of my four Parathyroid Glands during the surgery. If I had the surgery again, I would take the calcium supplements the first day until I had my levels checked again so I wouldn’t have to go through thinking I was having a Stroke and not going to make it!

My post-op visit was a few days later and I was healing well and my wound was looking good. The doctor said the glue would eventually come off as the wound sealed up. He released me back to light work and driving but told me to wait until my month follow-up to start singing again in case there was damage done to my vocal folds. He will scope my throat again at the month visit to determine that. He told me to continue to take Calicitrate +D for a month ad that my depletion was most likely temporary.

My post-op visit with my Endocrinologist was the next day where he confirmed that the pathology came back that there was a Micro Carcinoma on my right lobe, which we had never even looked at or seen, so, removing my whole thyroid was the right decision. Thank God! I would hate to have had to undergo the surgery again to get the right side out if we had done the partial removal. Phew! My cancer was Papillary Thyroid Carcinoma, Stage I, and did not have any spreading into my lymph nodes or surrounding tissue, so no radioactive iodine treatment was necessary. I will continue to have scans and blood tests every six months until they determine there is no longer any reason to keep doing them. I was started on Synthroid treatment, every morning for the rest of my life, and told it will take up to a year to feel “normal” and get my medication levels correct. I have two daughters who now need to be examined and have genetic testing done to determine if they are susceptible for this same cancer because it is now in their family medical history. 🙁

It has been two weeks since my surgery and I have returned to half days at work. Besides being exhausted when I get home, I am feeling much better. I think that I jumped back into life too quickly and need to remember that I’m recovering from major surgery. I have been having some headaches which I think I have traced to the Calcitrate, but if I take an Excedrin Migraine with the pill it gets ahead of the pain, and knowing this is temporary, I can live with that. I hope this helps you to know that not all stories are horror stories. I know I have a long way to go, but overall, it has been a good experience and I’m looking forward to being healthy and feeling better and getting on with the second half of my life!

Site note from site author: Thank you, Gina, SO much for sharing you story! PLEASE check back with us at 6 months and then 12 months. Everyone feels pretty OK at 2 weeks.. then it’ll start to hit yah. Just take it easy, and keep us updated. xoxoxoxo Sparky

2 Comments

Filed under Goiter

Total Thyroidectomy and Doing Great

My name is Anel; I am a female currently 25 years old.
About two months ago, sometime in August 2017, I went for a regular check up to the doctor and the doctor noticed I had enlarged thyroid glands.
Therefore, I was sent for blood work and a neck ultrasound. My blood work came out normal – the thyroid levels were what they are suppose to be but my ultrasound revealed that I had 4 nodules, two on each thyroid gland.

I was sent to a specialist for a biopsy and turns out I had papillary thyroid cancer. The biopsy came out inconclusive on two of the nodules they tested; only one nodule came out positive for cancer so they couldn’t tell me what stage cancer it was.

I was told I would have to have a complete thyroidectomy. After staying up so many nights watching videos and reading stories about the terrible symptoms people get after surgery, I was super nervous. I read that you gain weight even if you eat right and exercise, have a foggy brain, feel tired, lose hair and loss of energy.

I had surgery to remove my thyroid on September 19; it is now September 29 so I am 10 days post op and I feel GREAT!

I had surgery at 11 am and woke up at 7:30 pm from the anesthesia. I felt good after the surgery, a few hours later I just had a really sore throat from the tube they stick down to breathe. I spent one night at the hospital to make sure my calcium levels were okay. From the day of the surgery till today I have not had to take any pain medication, my neck was just really stiff and tense nothing major.

I was given 135 mcg Levothyroxine to take the very next day and now for the rest of my life. I wanted to let anyone who is reading this know that it is not always negative – it can be a positive outcome.

I have not felt any different since my surgery, I started going to the gym just 3 days later, I have been taking it lightly as to not lifting any weights over 10lbs per doctor’s order. I have changed my diet as well; I am following a gluten free diet and I know I can easily make this a lifestyle change and I have felt a difference in my body – I feel healthier in general. I will be doing the radioactive iodine in about a month and will be getting my thyroid levels tested in 2 weeks in case I need any adjustments.

But so far so good no complaints 🙂

12 Comments

Filed under Thyroid Cancer

Inspirationally Adorable Grave’s Survivor’s Story

My name is Summer, and I am 22 years old. I live in Marietta, Georgia and am female.

About 5 years ago, I began having awful symptoms. My body actually felt like it was shutting down. My heart would race, my hair fell out, I gained weight, my skin got pale and broken out, you name it. 5 long years I suffered thinking my heart was my problem. I went to a cardiologist, the hospital, and doctors SEVERAL times. I used to cry because suffering so greatly and not knowing what is wrong is heart breaking. I had been suffering since 18, and finally as a last resort I went to an endocrinologist.

Immediately, he freaked. My levels were up AND down. I was all over the place. He gave me options but when he said surgery, for some reason I knew I had to have it done. I knew what my life would end up being if I kept the demon in my throat. My grandmother has awful Graves. Yes, it is scary, but dying is much scarier.

So I didn’t give it much more thought and right after my 21st birthday, cut the thing out.

I have to admit, my heart instantly responded. That night, I slept. No heart racing, panic attacks, crying. I didn’t care that it felt like I stuck a cactus full of angry bees down my throat. I am 22 now, and the struggle was so real. I was so tired when I first started taking the hormones.

My advice? Don’t give up! I haven’t lost a whole lot of weight, but I used to be obsessed with working out and hardly ate at all. So really, it’s a chance at a new life. Find what works for you. I CAN lose weight. I CAN EAT PIZZA AND COOKIES. I don’t eat them often, but I don’t focus on my weight. I can climb Kennesaw mountain AND eat doritos.

I love this blog because not every story is sad and I’m so happy to see everyone else so happy! I sleep without my heart racing!
Do what you need to do man, sometimes it can be life or death with that stupid butterfly thing!
Eat well, and you will feel well.
Does it suck sometimes? Of course!
Will you cry while eating an entire pie? I’ve done it!

No journey is easy, but I’m starting to find my motivation. I feel GREAT, and I look smaller despite the number on the scale.
Work hard, sweat, eat well, and let’s beat all of those who don’t believe you can be fine without a thyroid!
So give yourself a facial,
try a new hair color,
try some weird exercise you find on YouTube, make it a game.
Try making pasta out of veggies with the veggetti!(personally I love it),
try lifting weights and body strength exercise (makes you feel like the hulk and very powerful highly recommend) (Pinterest has great home workouts for moms and people strapped for time).

My final thought, if any of you have made it through my long story, is that it can be a very positive thing. After what I read on Google, I was devastated by the horror stories. I didn’t believe it was possible to be happy and healthy without my thyroid. Being so young, I still get bothered by the fact I will have to be mindful of my health the rest of my life, but that will never stop me. I have proved even myself wrong and will continue to live life to the fullest. Salad and Doritos. Workouts and naps. Surgery was a small price to pay compared to fighting for my life, and that is what keeps me going.

4 Comments

Filed under Grave's Disease

5 Year Thyroidectomy Anniversary!

In celebration of my five year thyroidectomy anniversary, I am captaining a Relay for Life team. If you have found this site helpful, please consider making a small donation towards my fundraiser, which raises money for the American Cancer Society.

What a wild ride it has been. I’d say overall my quality of life is amazing.
Here is a recap from start to present of my thyroidectomy journey:

  • First 6 months after surgery – I have almost no memory of this time. It was like living in a hazy dream. Tired all the time. Tired and hazy.
  • Next year – very difficult to explain but essentially I felt like I had to ‘re-learn’ my body. Not in a ‘bad’ way but… things are different.
  • My short term memory feels severely impacted and I started using an iPad at work to help log notes – this has totally helped!
  • One year anniversary of the thyroidectomy, I completed a triathlon. I felt like a champion.
  • Year Two I learned that a low carb/high fat diet now works best for me to lose weight.
  • I also realize that not only is my short term memory junk, but facial recognition has devolved. I have a difficult time telling humans apart.
  • Year Three and Four I realize that I tire easily – endocrinologist confirms my levels are fine. I’ll chalk this up to age (I am in my late 30s) and lack of thyroid
  • Year Four – three different doctors tell me not to go on Birth Control because it will conflict with my thyroid medications. I do not listen to them. I should have listened to them. What a mistake. Ugh.
  • Year Five – just found out that my form of thyroid cancer was downgraded and is no longer a ‘cancer’! Follicular Papillary malignant mass does not spread outside the tumor and does not require radioactive iodine. I feel happy and justified that I didn’t go the radioactive iodine route.

2016

2016

October 2011

October 2011

Yes, I even put my surgery on my calendar, way back then.

Yes, I even put my surgery on my calendar, way back then.

9 Comments

Filed under Thyroid Cancer

Not all thyroid tumors are cancer!

Source article: It’s Not Cancer: Doctors Reclassify a Thyroid Tumor

“An international panel of doctors has decided that a type of tumor that was classified as a cancer is not a cancer at all.

As a result, they have officially downgraded the condition, and thousands of patients will be spared removal of their thyroid, treatment with radioactive iodine and regular checkups for the rest of their lives, all to protect against a tumor that was never a threat.

Their conclusion, and the data that led to it, was reported Thursday in the journal JAMA Oncology. The change is expected to affect about 10,000 of the nearly 65,000 thyroid cancer patients a year in the United States…

The reclassified tumor is a small lump in the thyroid that is completely surrounded by a capsule of fibrous tissue. Its nucleus looks like a cancer but the cells have not broken out of their capsule, and surgery to remove the entire thyroid followed by treatment with radioactive iodine is unnecessary and harmful, the panel said. They have now renamed the tumor. Instead of calling it “encapsulated follicular variant of papillary thyroid carcinoma,” they now call it “noninvasive follicular thyroid neoplasm with papillary-like nuclear features,” or NIFTP. The word “carcinoma” is gone.”

Please read the source article as well as the medical article for more details.
Make sure your doctor is up to date with medical studies, and always get a second opinion from a specialist!

Leave a Comment

Filed under Thyroid Cancer

Daphne from Malaysia – Hyperthyroidism (with lovely scar pics!)

I was diagnosed with hyperthyroidism in June 2013. The doctor gave me Carbimazole and I was allergic to the medication. I had 10 days of fever, coughing, and ulcers all over my throat as the medication killed all my white blood cells almost to zero. And I had no antibodies in my body which caused me to be sick. I also lost weight, about 10 kg (22 lbs), by the time I was diagnosed with hyperthyroidism.

One day after her surgery!

One day after her surgery!


When the doctor decided to remove my thyroid gland, I thought positively that all this was given by God, God knows whats best for me. So I agreed for the doctor to to remove my thyroid gland and replace with the hormone pills, knowing I would be taking them forever. The doctor did suggest to try other methods for destroying my thyroid, like ingesting radioactive material, but it’s not guaranteed that my hyperthyroidism will be cured and it might come back.
Two years later and you can't even see it! Beautiful :)

Two years later and you can’t even see it! Beautiful 🙂


It is now two years later and I’m feeling great. Much better after surgery although my TSH is still up and down.

5 Comments

Filed under Hyperthyroid

Jennifer evicted her multi-nodular, Hashimoto’s attacked thyroid

I had been struggling with the symptoms for approximately the last three years. I was always cold, experienced unexplained weight gain, severe headaches, digestion problems, losing hair, dry skin, brittle nails, and consistent trouble swallowing. And one of the worst symptoms was the feeling like something was stuck in my throat 24 hours a day. I had to work at even swallowing my own saliva!

About a year and a half ago, I went to my doctor and after an ultrasound they discovered multiple nodules on my thyroid. A FNA biopsy was done and no cancer was found so I was told to follow up in about six months. In the meantime I was told my symptoms could not possibly be contributed to my thyroid.

I had every medical test I could think of to include an Endoscopy, ultrasound, swallow test, blood tests, MRI, and I was even scheduled for a CT scan, but by that point I had given up all hope and didn’t go. I was very discouraged.

My blood tests always came back within the “normal range” so It seemed synthetic thyroid hormones would do me no good.

I finally insisted they test me for antibodies and low and behold I was diagnosed with Hashimoto’s. However, even with this diagnosis my blood test came back within the “normal range”, so no medication was prescribed. I was again advised to follow up in a couple of months and I just had to deal with all the symptoms.

For a little while I just gave up and dealt with that until I couldn’t take it anymore and went back to a doctor at a clinic sponsored by my employer. I finally found someone to listen to me and she sent me to a general surgeon. He assured me I wasn’t going crazy and the swallowing issues were in fact likely due to my thyroid nodules. New nodules were also found an a follow-up ultrasound so it was decided I would have a total thyroidectomy on September 28, 2015.

Fast forward to today. I am approximately three weeks out from my surgery and I have zero regrets! There was a fair amount of pain after surgery but nothing compared to what I’ve experienced the last three years. The pain medication took care of it. I was also given levothyroxine immediately after surgery and started it the next day. The surgeon said my thyroid was quite large and had started wrapping around my esophagus and that was why I was having the swallowing issues. He told me with my diseased thyroid out of my body I would begin to feel much better and guess what….

I feel great! feel like I have finally got my life back. I’m able to stay warm, I have energy again, the headaches have decreased drastically, and most importantly I CAN SWALLOW! I am experiencing tightness and swelling in my neck where the incision is, but I have faith that that will soon disappear with time. The scar is minimal and is already starting to fade. I am using silicone strips and they seem to be doing the trick.

I,too, only found horror stories about the surgery and recovery, but I’m happy to share that mine is just the opposite and I have faith I will only continue to improve. I know my medication may need to be adjusted, but right now it seems to be working and I’m very happy with the results.

My only advice is to advocate advocate advocate for yourself. You know your own body and when something feels wrong trust your instincts. I wish I would have pushed to the doctors years ago and not suffered the last couple years but I’m not going to look back I’m just going to look forward and be glad I have been getting my life back.

Thanks for allowing me to share my story and I wish you all the best!

Jennifer

18 Comments

Filed under AutoImmune, Hashimoto's, Nodules

Grave’s Disease

Hey there!  My name is Laura, I’m a 31 year old female from Missouri.

First of all I want to thank you for starting this blog – I read the stories over and over as my thyroidectomy approached.  It really helped calm my nerves, hearing real stories from people who went through it.

I was diagnosed with Graves disease (hyperactive thyroid) at the age of 25.  I was feeling awful – sweaty, shaky, a constant upset stomach, racing heart rate – I had no idea what was wrong with me.  For as long as I can remember, I’ve had a fast heart rate and super fast metabolism.  My husband always calls me his hummingbird, because I reminded him of one with my sped up body functions and nervousness.  I hadn’t had my thyroid checked in a good 5 years or so (my pediatrician checked this a lot when I was young, as I was always very small), and I didn’t even think about it at the time, because I had no idea what thyroid disease actually meant.  So I went to the doctor and they checked multiple things, thyroid levels being one of them.  They called me with my results of Graves disease, and sent me immediately to an endo.  From that point on I was on different levels of methimazole and beta blockers.  After a year or so, my endo tried to take me off of methimazole to see how my thyroid would do, and it came back even worse than before.  So there we were, I was told I would have graves disease for life. 

In 2013 I became pregnant and immediately stopped the methimazole, at my endo’s request.  Thankfully my levels straightened out during my pregnancy, so I didn’t have to take any medication.  I felt the best I have ever felt when I was pregnant!  July 2014 I had my amazing beautiful baby boy, and continued to feel good.  I actually thought MAYBE my thyroid had corrected itself for good.  I had an appointment with my endo scheduled for 6 weeks post partum, but I felt so great and was so attached to my baby that I cancelled my appointment and made one for 6 weeks later.  Big mistake not going to my original appointment: within 2 weeks my thyroid had spiraled completely out of control, it was so enlarged that I was choking on food when I tried to swallow, and my resting heart rate was 140.  I called my endo the next day, and once again, my thyroid was worse than it had ever been, nearing a storm, and my thyroid was also making me very anemic, almost to the point of needing a blood transfusion.  This is when surgery was highly recommended.  I went for a second opinion, and she also agreed that I am a perfect candidate for a thyroidectomy, and it’d be best to do it as soon as possible.  When I met with the surgeon, he immediately made me feel more confident about this procedure and decision, but I was still super nervous about it.

I was so nervous leading up to surgery, as this was my first time having surgery, plus I was losing a part of my body, a major part – an ORGAN!  This blog really helped me understand the process of surgery and healing, and it was great to have support from others that had gone through this.  My surgery went well, it was about 2 hours, which was longer than expected, because it was much larger than they thought.  I will admit, the pain that first day was rough – I didn’t even want to drink water.  So with the help of drugs, I slept most of the day and ended up staying overnight for observation, although before they saw how big my thyroid was, I was originally expected to go home the day of surgery.  The next morning, they checked my calcium levels and they were way down but they let me go home anyway.  They sent me home with a plethora of meds – 2 different pain meds, anti-nausea pills, synthroid and calcium.  Note: I took the liquid pain meds bc the idea of swallowing a horse pill on this tender throat made me cringe.  Dr said it would only be about half as effective but it was up to me.  I took that risk and did just fine.  Ahhh home sweet home 🙂 My husband showered me with lots of ice packs, ice cream and love. After a long weekend of resting at home, with ice packs and ice cream and soup I was feeling pretty good.  My voice started coming back way faster than I expected, only 2 days of having no voice and then it came back pretty quickly.  I felt good enough to go back to work a week after surgery.  I was tired, and my voice was hoarse, but over all I felt pretty good.  

I am now 7 weeks post surgery and so far I am glad that I had the thyroidectomy.  It is amazing having a normal heart rate, and one of the first things I noticed was that when I take a deep breath in, I can breathe easier!  It’s amazing.  Oh yeah, and I don’t have that massive bulge sticking out of my throat.  My scar looks great, I have been staying out of the sun and putting Vitamin E oil on it morning and night.  I’m very happy with my surgeon and how well he did.  My endo recently upped my synthroid from 75mcg to 100, as my TSH was 19.  I am feeling a bit tired and lightheaded here and there, but otherwise I can’t complain!  I can’t wait until my levels are completely straightened out – but I think we are on our way 🙂 I hope my story continues to be a positive one, and I hope I can encourage or help someone else going through the pain of thyroid disease.

Thanks,
Laura

4 Comments

Filed under Grave's Disease