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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19 Comments

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

  1. Sarah

    Thank you so much for posting something positive!!! And pics too! My situation is a bit different but my thyroidectomy is 2 weeks away. I have papillary thyroid cancer. Which was a total surprise. It was found by my dr when I was getting a checkup. I’m a little nervous because I feel totally fine except the weird feeling like there is something stuck in my throat all the time. It is good to hear something positive instead I all the doom and gloom.

  2. Jenna

    Hi Shelby,
    Thank you so much for posting your story. I, too, have Graves’ and have had it for many years and it’s been a horrible roller coaster ride. I’ve really fought against destructive therapy but have been on the antithyroid meds too long and am at a point where a thyroidectomy just seems to make more sense. I’ve been super skeptical about the whole thing and reading your story is very hopeful for me.
    Also, your family sounds like mine, naming your thyroid and such. It always helps to have some humor in the icky stuff.
    Also, also, please thank your boyfriend for his service in the military (I assume he is in it by the word deploy… if not, ignore this part…)
    Thank you so much!
    ~Jenna

    • Shelby

      I am glad that it could offer some support, some times its just nice to know that others are going through the same thing and understand. And I am glad that you can appreciate my family’s humor, we actually had a going away party for my thyroid the night before my surgery (but that is a whole other story).

      He is in the military (Navy), and I will pass it along to him, thank you for your support.

      Good luck with whatever direction you decide to go!

  3. Laura

    Thank you SO MUCH for sharing!! I’ve been a Graves Disease sufferer for about 7 years now, and I’ve had 3 doctors recommend a total thyroidectomy. I am to the point where I am ready. I am waiting to hear from a surgeon to move forward with this major decision. I am SUPER nervous about it – the surgery alone makes me nervous, but also how was your recovery (as far as pain)? How do you feel so far being “hypothyroid” now?

    • Take out that stupid thyroid. So pesty! Stop letting it mess up your life.
      Almost no pain for my recovery, honestly. I really don’t remember any pain. I do remember being really tired.
      -Sparky

    • Shelby

      I completely understand the frustration of finally being ready to have it out and being done with the roller coaster! I hope that you are doing well, if you have already had the surgery then this won’t help very much, but if not… My recovery actually went well, and I healed faster than the doctors expected. When I woke up post-op there was some initial pain (not unbearable), but they gave me some pain killers, and an ice pack and it helped significantly. For the first few days my voice was quiet, but I could talk without trouble, and the surgeon was surprised that I could pronounce “eeee” the day after surgery. I never had to take any of the anti-nausea medicine they gave me, and I only on the pain medicine for 3 days. It really isn’t a painful surgery. Just be sure to have plenty of ice for your ice pack, because they help significantly. Depending on what I had done that day, if I had talked a lot or what not, I was still icing my neck up to 3 weeks after the surgery, but that was more for my comfort than for pain. It just felt kind of tired and dull. After a week I was driving and running errands alone, and after about 1.5 weeks I was back at work. I will say that the hardest thing for me to adjust to was learning how to swallow normally again. I didn’t realize that I was double swallowing all of my food to get it passed my thyroid before, and when I tried to do that after I would choke on my spit or air. It also felt like the food was being vacuumed down, and there was a weird negative pressure, but that was just from having my neck to pressed on before, and the sensation went away after about a month or two, and now I don’t notice it at all. Occasionally I will get a weird sensation in my neck/throat, but its only been 4 months, so I have to remind myself that it is all still healing and healthy.
      I wish you the best of luck with your surgery, or whatever route you choose to pursue!

      • Laura

        Thanks so much for your response. I am having my total thyroidectomy this coming Thursday. I can’t believe it! I keep feeling my goiter, thinking how strange it will be to not have that bulge in my neck. And the idea of having a resting heart rate below 100 blows my mind. I appreciate your updates and I am so glad to hear you are well! I will be taking your advice and stocking up on ice packs (and ice cream, ha!). Hopefully I have a successful story to share on here, just as you and many others have!

  4. Rachel

    Hi Shelby

    I just wanted to say Hi and wanted you to know your not on your own being young and having thyroid problems.

    I was diagnosed at 13 with graves disease and hyperthyroidism, my resting heart rate was 111, I was skinny, no engery, moods all over the place and suffered with anxiety attacks. After a year of tyring to control my levels with medication it was decided I would have a total thyroidectomy at 14.

    Since then I have been on 200mg of levothyroxine for almost 12 years and I feel normal (well what I imagine normal is). I am active, healthy, and I take my medication every evening before bed as it is best for absorbtion if you dont eat for an hour after. I have to admit I have struggled with my weight and it is soooo annoying knowing how active I can be and yet still stubborn belly fat is hard to loose but thats just a small price to pay I think when I know how awful I could be feeling.

    My scar has completely healed now and is hardly visable, my levels are stable and the only problems I have is that my hair is very thin and can fall out easily but its managable.

    Just wanted you to know that there is light at the end of the tunnel and I hope you start to feel great again soon and I wish you all the best 🙂

    • Shelby

      Firstly, thank you for posting, it is nice to hear about someone else that experienced something so similar.
      Secondly, wow! I am surprised that they were willing to take your thyroid out while you were so young. But I am very happy to hear that you are doing so well with that choice, and able to enjoy an active life. I laughed when I read “or what I image normal is,” because it is so true, life with an irregular thyroid, or without a thyroid is not normal, the doctors tell us we are in or out of range and we believe them, depending on our symptoms. And to a degree it governs our lives. It so hard to explain to someone how, for instance, you can be so incredibly exhausted for no particular reason other than, my thyroid is off. And I totally understand the struggle with weight, it seems to just come and go as it pleases, regardless to the exercise put in.
      It is also nice to hear that you haven’t noticed any long term effects of being on that medicine, and that you are doing well! I hope you stay well and healthy!

  5. Rose

    Hi! I had a total thyroidectomy about three weeks ago, I am 25. I started experiencing thyroid issues probably when I was in high school (I now know that) and I only was aware after a doctor checked my blood work (routine). I then went to an endocrinologist who ran some tests and found that my thyroid was enlarged. That was in 2013. She monitored it every six months and it would grow each time. I experienced many of the symptoms in your story and after going to a new endocrinologist, she found that I had a goiter and sub-clinical hyperthyroidism and she suggested I have it removed. I thought about it and made the decision to have it removed. My recovery was pretty quick… I too was able to do house work after about a week and returned to work two weeks later. I was given 150 MG of synthroid and just got a call today, that it would be decreased to 137 MG. I feel pretty good, my scar if healing ok and while I’m not sure if its the best decision I’ve made, atleast I know that there are others like me. O and my voice is a little different in that I can’t yet or sing high without my straining my voice- hopefully that will clear soon. Thank you for sharing your story!

  6. Shelby

    I just wanted to report back in on how I am doing almost 4 months post-surgery.

    Three very exciting things have happened to me since my surgery:
    1. I was able to run my first continuous mile in years, but accelerated heart rate before would never allow me to push myself to run very hard.
    2. My hair isn’t falling out anymore. After the surgery it was coming out so fast that I had to cut it short (its a lot less concerning to find short hair everywhere, than to find hairs that are 18” long).
    3. I can eat food without having a beverage. This is something that I did so absentmindedly that I never noticed, but I would take a drink after every bite to help the food go down. And I almost always drank milk, which I thought was because I liked the flavor, but actually was because it was thicker, and help move the food more than water. I only realized this because I noticed that I don’t have to buy it as often anymore.

    My scar is healing nicely, and I have no residual pain, tightness, or numbness anymore. I am becoming very active again because my heart can finally handle it, and I am off of my heart medicine. I think that my synthroid dose needs a little fine tuning still, but it is getting closer to the perfect level.

    It actually is a strange sensation to me to be “in range” for such a long period of time. Before my levels would have spiked and plunged at least twice in four months, and it is really reaffirming that I made the right choice in getting the TT.

    I have noticed that I will occasionally reach up expecting to still feel my goiter bulging with the constant hum of its blood supply, and am shocked by how far my hand has to go before it reaches my neck, and by how slow my heart rate is now. I actually thought that something was wrong the first time my resting rate rate dipped below 90, and then it was below 80, and now it rests at or below 70. Which is a very strange sensation when I feel it, I still always expect it to be at least 100 resting.

    So far I have nothing but positive things to say about life without a thyroid. I do think that each person and each case is different, but for me and my thyroid, it was definitely good that we parted ways.

  7. Melanie

    Hi Shelby,
    I am a mother of a girl that is now 16 and last year we found out she has Graves. She has been on the same Meds that you were and today they put
    her on a Beta Blocker. Her levels have not changed they are through the roof.
    She was unable to get her tonsils and adenoids removed which is blocking her sinuses 80% which is making it hard for her to breath because she is one that would be good for the Perfect Thyroid Storm and Refused to do it. She doesn’t ever feel good, VERY VERY moody. I would like to know what your thoughts are or any ones of having her Thyroid killed off at such a young age and what would her life be like with out the Thyroid???
    Thank you
    Worried Mother

    • Hi Melanie,
      I am so sorry to hear that your daughter is going through so much! Why will they not remove her tonsils?
      Have you been to another endocrinologist for a second opinion?
      Cheers,
      Sarah

      • Melanie

        Hi Shelby,
        Because her level are through the roof and they will not put her under
        because of that. Her Case would be on for what they call the Prefect Thyroid Storm, Her Breathing could stop and/or her heart could stop while she is under. So they don’t want to take that Chance.
        She is seeing an Endo Dr. at Childrens Hospital in Pitts., Pa. and we Travel 2hrs just to go there. She is on 40mg of methimazole a day and her levels are still out of control after a year of different doses of this medication.
        Thank you
        Melanie

        • Laura

          Hi Melanie,
          I had my thyroid removed about 6 weeks ago and my levels were similar to your daughter’s for a while. Luckily, they got my levels under control before surgery. Have they tried putting her on iodine to shrink the thyroid enough for a safer surgery? My endo told me they did this to a patient recently and she got through surgery great. It was a back up plan if methinazole didn’t help me enough before surgery. Also – Have they mentioned radioactive iodine to kill the thyroid and then doing the tonsil surgery?
          Good luck to you both!
          Laura

  8. Ivan

    Hi Sarah,

    Thanks for posting something positively. A friend of mine who diagnosed papillary thyroid carcinoma and she is lacking some positive energy. Is anyone of you able to give out a moral support to my friend by shooting a short clip which to encourage her to stay positive from fighting against it?
    Here is my email add
    Ivanng921@hotmail.com

    Regards,
    Ivan

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