Life Without a Thyroid

October 15, 2020 · 12:36 pm

Five Years Later: Reflections and Celebrations of a Former Graves Girl

My story begins back in the Winter of 2011 at the age of 36. At the time, I was just starting out in my career as a school counselor, had just bought my first home and was in a new relationship. I felt like I had everything going for me. As you begin to read my story, it may initially sound like many other stories, but its not. I hit many unusual and unfortunate bumps in the road before I came to a place of wellness, peace and acceptance.

As the winter progressed, it felt like my health was starting to digress. I had trouble sleeping, I had elevated an elevated heart rate/blood pressure, my hands would constantly shake, I started having frequent panic attacks and problems with my eyes. After some extensive lab work, my general practitioner diagnosed me with Hyperthyroidism caused by Graves Disease (based on my autoimmune antibody blood work). I knew thyroid problems ran in my family, but mostly Hypothyroidism, as far as I could recall. My grandmother battled with an underactive thyroid for years.

My doctor then referred me to a well-known endocrinologist who specialize in complex cases of Graves Disease. My case was considered complex as I had an unusually high antibody count and a huge goiter that sometimes had the tendency to choke me. The right side of my thyroid was like three times the size of the left side. I was also diagnosed with Thyroid Eye Disease. Fortunately, I didnt get the bulging you sometimes see with Graves, but I had blurred vision, a gritty feel in my eyes and frequent eye infections.

My new endo and his team of course offered me the usual three choices of treatment: medication, Radioactive Iodine (RAI) and surgery.

Although none of these options seemed appealing to me, I started out taking Methimazole, accompanied by beta blockers and anti-anxiety medications. When I was first diagnosed, my condition was so bad that I was taking between 12-15 pills a day and I was on 60 MG of Methimazole. This dosage is unheard of unless you are on the verge of a Thyroid Storm, which was the dark road I was headed towards. At this time, my doctors were really pushing for me to do RAI as soon as possible. The thought of RAI just didnt sit well with me this early on in the condition. The story of course gets better!

After just a couple of weeks of taking the Methimazole (60 MG), my poor body rebelled and broke down by developing severe allergic reaction of extreme joint pain in just about every joint in my body. I could barely move or walk even a short distance because my body was in so much pain. I limped when I walked and needed a cane as a walking aide. As much as I just wanted to get off the meds, I couldnt as I was warned against the possibility of going into Thyroid Storm. As all of this was happening, my mental health was getting worse (Graves Rage) along with frequent panic attacks, and an overall decline of my health was persisting. I was forced to resign at my job and pursue disability. Additionally, I lost my relationship as well as I felt I had nothing to give to anyone during my health crisis. All I could think of was trying to survive without extreme bodily pain.

Around this time, I got into a disagreement with my endo as they were pushing RAI constantly, and I just didnt feel ready for it. So me and my poor painful body secretly searched for a new endocrinologist. By the time I met with my new endo, she was like a breath of fresh air. She took me off the Methamizole and didnt push RAI. She recommended I try Propothyrocil (PTU) for a few months to see if remission was possible within two years.

Over the next year, my health improved while taking the PTU. I was living a healthier lifestyle by exercising more, eating healthier and picked up on some holistic remedies along the way. Like I said, things were great for about a year and a half until we started to decrease my PTU. Upon decreasing my PTU, my Graves flared up with a vengeance. PTU has a black box warning and its not meant to be taken long-term at higher dosages. For the first time, I seriously started thinking of submitting to RAI. I completed the uptake scan (RAI 123) with the nuclear medicine doctor. We discovered that my TSH, T3 and anti-body count were so abnormally high, I was at risk for Thyroid Storm again. So, I submitted to the RAI treatment (131) at 15 mc, and didnt really have a reaction. I heard nightmare stories about RAI and its side effects, but it felt like nothing to me. I didn’t turn me bright neon green/yellow and none of my electronics sparked from nuclear contact. I spent a week home alone mostly reading and watching Netflix while I wondered what was occurring in my newly radiated body.

Fast forward six months and the RAI hasnt worked. I’m still on PTU and my thyroid levels are up and down. I could sense my doctors frustration, so she recommended another round of RAI. This idea wasn’t sitting well with me so I went for a second opinion. I actually went back to my original endo with some slight embarrassment considering I didnt really leave on the best terms. They welcomed me back with open arms and ran some blood work. Interesting enough, I have developed Hashimotos Disease and my liver enzymes are elevated (possibly due to the prolonged use of PTU). Now I will need block replacement therapy (which is complicated in itself) and I might have to get off of PTU which I cant live without. My endo then surprised me and said based on my high antibody count and extremely large goiter, he didnt believe that another dose of RAI would be appropriate. In fact, if I did it again, I might be looking at doses in the amount given to thyroid cancer patients. He then recommended a Total Thyroidectomy surgery with one of the best endocrine surgeons in the state. The thought of this surgery just terrified me!! I remember being a child/teenager and watching action/horror movies watching people get their throats slashed and thinking this is the worst way to die, and nobody will ever be able to place a sharp object near my neck.

Although it was my worst fear, I was comforted in the fact that I have exhausted all treatment options for this disease. I had literally reached the end of my rope, and desperately needed this surgery to improve the quality of my life, lengthen my life and possibly save it! The pressure this disease was putting on my heart and liver was no longer worth it.

Over the next couple of months, I prayed about this impending surgery and interviewed various surgeons for the job. I ended up hiring my endos recommendation for a surgeon. I felt instantly comfortable with him and he had a ton of experience with complex cases of Graves Disease.

Unfortunately, two weeks prior to my surgery I got really ill and ended up in the ER when my thyroid was swelling up and choking me, not allowing me to clear my lungs. I knew then I needed to have the surgery as soon as possible despite my fear of going under the knife. I had just turned 40 years old and wanted a brand new lease on life so I had the surgery in March of 2015.

It was an instant success with no surgical complications and a pleasant hospital stay. I was placed on hormone replacement (Synthroid) right away. I had minimal scarring post-surgery. I would highly recommend my surgeon over and over again.

Post-surgery, it has taken me a few years between trying Synthroid and natural thyroid meds (e.g. Armour Thyroid, etc.) to get stabilized. Im finally stabilized and at a point where I feel pretty good or lets say I have found my new norm. Although Ive gained about 10 lbs. since being thyroid less, and my weight still seems to fluctuate a bit.

I think my biggest gripe since being hypothyroid is how easily I tire sometimes as some days/nights are worse than others. I continue to eat well, exercise regularly, get plenty of rest and keep my stress levels down, which really helps.

Overall, I’m feeling pretty good now and if I had to do it all over again, I dont think I would have done anything differently.

Educating myself on thyroid disease, acknowledging, understanding and accepting the disease has helped me tremendously during the healing process both physically and mentally. I have lived and learned (sometimes the hard way), but I feel like there are no what ifs or bargaining thoughts as I have taken every appropriate route and crazy turn to end up where I’m at alive and healthy thank be to God.

Here I am 5 years later as happy and healthy as can be. Cheers to 5 years of being thyroidless and overcoming Graves Disease!!

Post thyroidectomy — Cheers to 5 years of being thyroidless and overcoming Graves Disease!!

1 Comment

Filed under Grave's Disease

Tagged as 40, female, Methimazole, Propothyrocil, Synthroid, Thyroid Eye Disease

April 30, 2018 · 10:28 pm

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

8 Comments

Filed under Papillary, Thyroid Cancer

April 1, 2018 · 9:34 pm

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!

33 Comments

Filed under Papillary

Tagged as 27, male

February 25, 2018 · 7:14 pm

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

5 Comments

Filed under Goiter

Tagged as 50

September 29, 2017 · 10:06 am

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 🙂

13 Comments

Filed under Thyroid Cancer

Tagged as 25, female

March 27, 2017 · 10:51 pm

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

Tagged as 22, female, Graves

September 13, 2016 · 11:03 pm

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

October 2011

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

10 Comments

Filed under Thyroid Cancer

Tagged as sparky

April 16, 2016 · 12:21 am

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!

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!

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 🙂

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

6 Comments

Filed under Hyperthyroid

October 18, 2015 · 10:23 pm

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.