Category Archives: Grave’s Disease

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.

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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

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Grave’s Disease Long Time Sufferer finally gets a Thyroidectomy!

Hello, my name is Shelby and I am a 22 year old female from Oregon.

I was diagnosed with Grave’s Disease (hyperthyroidism) when I was 14 years old. Oddly enough, it was first noticed during my sports physical by our family chiropractor that first noticed something was off (except for my sister, she kept saying that something was wrong and no one believed her – always listen to your sister) – my resting heart rate was 114 beats per minute, as well as some other indicators. He referred me to see a pediatric general practitioner, who worked with me and a pediatric endocrinologist and were able to get me mostly in-range with monthly blood draws and a lot of medication adjustments (I was on methimazole and beta-blockers). My weight fluctuated greatly (never easy for a teenage girl), my hair was falling out rapidly (even my eyebrows and eyelashes), my thyroid grew into a small goiter, and I was ALWAYS tired. By my senior year I had lost about half of my hair (which I know because my mom is a hair stylist and couldn’t believe what was happening) and I finally cut it off in a short pixie cut, because I was tired of having so many fuzzy little layers at it grew back in.

College was when I really started having problems with my thyroid. The stress of school, living on my own, and learning how/what to eat again (I was diagnosed with Celiac Disease the spring of my senior year of high school) created a situation to turn my hormones onto overdrive. By spring term of my freshman year my thyroid was so enlarged (defiant goiter) that I was hoarse and coughing all of the time. My endocrinologist (I was on my second one by then) was changing my dose every month and didn’t believe I was even taking my medicine, because my levels would fluctuate so rapidly and severely.

I was still against killing my thyroid at this point because I wasn’t ready to give up the fight. Plus, my doctor was really fond of using radioactive iodine and I just didn’t feel like that was the right decision for me, especially because I was so young and couldn’t find any case studies on anyone else my age having it done. So I kept trying to suppress it with anti-thyroid medicine and keep going with my life – I also changed doctors again. My new doctor was onboard for not killing my thyroid and trying to work with me.

All and all I don’t think I would have made it through college without my amazing boyfriend to keep me grounded throughout all of my mood swings, tired phases, memory loss, and all of the usual trials and tribulthryoid 3 weeksations of normal college life (and of course my family’s complete support through everything). However, by my senior year of college I was just done fighting my thyroid: I could no longer sleep on my back because it would choke me, I couldn’t eat without something to drink to get it down, the heart problems that it caused where as bad as the thyroid ones (my regular resting heartrate was 110bpm, and I was told I had to stop exercising when it went over 200bpm), I choked on my food constantly and wouldn’t eat if I was home alone, it had become all-consuming of my life. Plus, all of the side effects of Grave’s disease itself, I wanted it out, and everyone around me was onboard for the decision…except my thyroid (who was named Theodore by my sister when I was in high school, bit of a standing joke with the family). Because it is considered an “elective procedure” I needed to be in range for the surgery. So I waited, and waited, and waited. After graduation my doctor asked me if the stress level of my life would decrease now that I finished school (I wish!), I replied that my dad had just gotten out of the hospital with 11 broken ribs and a punctured lung and my boyfriend was about to deploy (so much for stress free).

Finally, the beginning of 2015 had a change of fate for me and I was approved for the surgery. I was referred for a wonderful surgeon who I had complete trust in and had a total thyroidectomy on February 11th. The surgery was actually faster than they had anticipated and only took 2 hours, although my thyroid was bigger than they had believed and I had a much more extensive blood supply than they thought (even after 10 days of iodine). My thyroid ended up being approximately 9cm wide, by 7cm tall – much bigger than it should have ever been, and was biopsied and came back clean. I stayed in the hospital overnight for observation and was released the next day with synthroid, mild pain killers (that I only needed for 3 days), and nausea medicine (that I never used). And I finally didn’t have to be on beta-blockers for my heart. After a long weekend of lying on the couch with an ice pack on my neck, and eating soft foods I was feeling good again.

theodore

EWWWWWWWWWWWWWWWWWWWWWWWW NICE

After a week I was driving again and doing stuff around the house. After about 1.5 weeks I went back to work, and at 2 weeks I was on a plane flying to my boyfriend’s homecoming from deployment – this was first approved by my surgeon with instructions. It will be 3 weeks post-surgery tomorrow, and my incision is already scarred over and healing great and I feel wonderful. The thing that still feels strange to me is swallowing, because I hadn’t realized that I was swallowing my food multiple times to get it down, and now I don’t have to. And I was used to feeling my goiter and all the muscles bob around when I swallowed or talked and now it feels like something is missing. I am sure that I will get used to that soon! I know that I am in the minority of being young for thyroid problems, but if anyone else out there is in a similar situation, you are not alone, I did it and am feeling great.

*The pictures are of my removed thyroid (which I requested to see because I was curious), and of my incision scar 3 weeks after the total thyroidectomy

 

Sparky here (the operator of LWaT). I asked Shelby the following question: “do you think you would have done this sooner, knowing what you know now?”

Her reply:

Knowing what I know now I would have probably had it removed a few years ago. The problem was that I had a love/hate relationship with my thyroid. It would go out of control (which we called my “roid rage” – sometimes you just have to make bad situations into a joke) and it would grow and cause problems, but then when the stress calmed down my thyroid would shrink again and I would want to give it another chance to work like it was supposed to. Because I was so young when it was diagnose my doctors always thought that it would go into remission and wanted to give it time. Really though, when it started interfering with my swallowing is when I should have insisted on the surgery.

 

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