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Caitlyn first contacted me before her thyroidectomy surgery, and I found her story inspiring. I am trying to gather a collection of positive surgery experiences, in a battle to try and counteract the horror stories that happen to the minority that seem to proliferate the online circuit. And as I can only offer my experience of thyroid surgery in the UK, Caitlyn has provided the perfect insight into a thyroidectomy in the US - so grab a cuppa and make sure you read it all - it's worth it!
After being diagnosed at the young age of fifteen, I struggled with Hashimoto's for three years before my surgeon and I decided that it was time for a total thyroidectomy.
I struggled with hypo and hyperthyroidism, and all of their symptoms.
I would gain and lose significant amounts of weight without any change to my diet and exercise- which, as I’m sure you can all imagine was completely mortifying, especially for a teenage girl.
Along with my hypo and hyperthyroid symptoms, and my large goiter, I also had several cysts and solid nodules all over my thyroid gland.
The majority of them would often be present during one ultrasound then gone the next; but two on my left lobe always remained and grew larger each visit.
Since I was under 18 during the majority of my treatment, I was treated at a paediatric hospital- who often do not see many cases where surgical intervention is required to treat a large goiter, especially when benign nodules are involved.
I was told that a thyroidectomy would do more harm than good by my paediatric Endocrinologist, and that it was strictly to be used as a last resort.
It wasn’t until an annual visit with my ENT (who I was seeing for chronic ear infections/pain and who I mention my thyroid problem to) that I learned that a thyroidectomy was not only necessary, but would actually improve my life.
My doctor didn’t even ask about my ears, but instead looked at me from all the way across the room and said “Dear God, does that ever need to come out!”
He gave me the real facts about the operation, and that instead of ALWAYS needing to adjust my synthroid due to my hypo/hyper swings I’d finally stay in one place, and have a constant energy flow, and WEIGHT.
I’d also finally be able to breathe and sleep normally, and finally be rid of the giant compression in my throat!
I stayed in my doctor’s office for over an hour throwing every single “what if?” scenario at him, and he answered all my questions with sincere patience and honesty.
Which leads me to my first and most important piece of advice, be 100% comfortable with your surgeon.
Finally, the day of my surgery came and I was no longer scared, I was extremely excited to get it all over with!
I had finished all of my exams and was ready to enjoy Christmas break on the couch and finally start to feel like a normal 18 year old girl.
My surgery was scheduled for 7:30 in the morning, which meant I needed to be at the hospital by 5:30 am sharp.
I was quickly taken back to pre-op, most hospitals will allow you to bring your support person with you, so my dad was allowed to come back.
You’ll be weighed, and asked to change into a surgical gown before getting into bed.
A nurse will be with you quickly to ask you a few questions and have you sign paper work before you’re given ‘loopy’ medication.
You will see many people before your operation, such as nurses, your anaesthesiologist, and your surgeon.
The questions they ask you may seem basic and redundant, but they are important for legal reasons and for your safety.
I was incredibly lucky to have such a sweet pre-op nurse; she informed me of everything as she went along, I’ve never had any kind of surgery before besides the standard tonsils/adenoids. If you’re scared of IV’s or just plain don’t like them they will inject you with a numbing solution before they inset the needle- I didn’t feel a thing!
Your nurse will be sure to tell you before she gives you your loopy drugs, at first it’s just a saline solution to hydrate you. They’ll give you the good stuff just before you’re wheeled down to surgery!
It will hit you like a ton of bricks, one minute I was having a normal conversation with my dad about what ice cream he needed to go buy and then the next I was giggling uncontrollably.
However, I was coherent enough to ask the nurse if I was allowed to bring my stuffed Shamu with me to the OR (don’t make fun of me, it’s so soft and cute and I recommend bringing something that makes you happy!).
Unfortunately, she told me I wasn’t allowed to bring it with me but let me keep it until we got to the OR doors.
She wrote my name on the tag and kept it up at the nurses’ station and promised it would be there when I woke up.
Sure enough, it was!
Out of her crazy busy schedule I thought that it was so nice that she’d take the time to do that for me.
By the time that you get to the OR you’ll be feeling pretty awesome.
There will be LOTS of people, such as scrub nurses, your anaesthesiologist and your surgeon.
The OR will also be very cold, so don’t be afraid to ask for blankets, my nurse piled 3 heated blankets on me!
After a few minutes it’ll be time for your surgery, I asked my anaesthesiologist to let me know exactly what was going at all times.
He placed a mask on my nose and mouth and let me know it was just air at first, and let me know that I’d feel a little bit of a burn when he injected the Propofol.
When that’s injected you’ll begin to feel very sleepy, and will feel a bit dizzy.
He then let me know that it would no longer be air coming through my mask but the anaesthetic, and before I knew it he asked me to count down from one hundred.
I later learned that I was so out of it I ‘counted’ by saying “100, 99, xyz”. Oops.
My surgery took a little over two hours, my gland was so large it took my surgeon a little longer to get it out than he expected.
He said I definitely made the right decision; it was so diseased, damaged, and infested with nodules that the gland looked like a bunch of squished grapes. Yikes.
If you do have nodules, your gland will be sent to pathology; I received the excellent news that my two large nodules were benign after about 3 days after surgery; that was probably the best Christmas gift ever!
I was in recovery for about an hour before I woke up and was sent to my room, I did feel a bit nauseous but that quickly stopped after I received IV medication for it.
You will feel pretty sore after surgery, to my surprise it was mostly in the back of my neck vs. that of the incision because you may be bent back pretty far in surgery.
It will feel strange to swallow at first, it’ll feel like everything inside is moving up and down because of the sutures.
But, if you’re like me, you’ll mainly just be super excited that you can actually swallow!
The first thing I did was stare at my neck for about 15 minutes in the mirror, and go on and on in a painkiller induced haze to my dad about how my neck finally ‘went in!’
You may not be able to talk for a while, don’t worry, this is most likely just because of your breathing tube!
My voice came back completely about two weeks after surgery, but it is different for everyone.
Visitors are up to you, I had about five people come in and out during the day. It wasn’t too much for me, I would’ve gone crazy with boredom if my friends and family hadn’t come to visit; and I’m sure you can bribe them into bringing you some yummy food!
Just make sure you check with your roommate if you have one.
I definitely recommend bringing your own clothes to the hospital with you. I knew I wanted to be comfortable and able to get out of bed easily and didn’t want to worry about a gown so I just brought some yoga pants and a short sleeved shirt: don’t be afraid to ask your nurse to help you get changed- they’ve seen it all before!
Long sleeves are more difficult because of your IV but I did manage to put on a sweatshirt before bed, because mine was in my wrist.
I only stayed in the hospital for one night, and was out the very next afternoon around 1pm.
Overall I’m so incredibly glad that I went through with my thyroidectomy.
It was so difficult for me to find positive experiences, no matter where I looked.
It was also difficult for me to find experiences from people as young as I was.
Luckily, I stumbled upon this blog about a month before my surgery and was thrilled to see Sarah and I had so much in common such as Celiac and Hashimotos, and she was also a bit closer to my age.
However, what was most reassuring of all was to read the experience of someone who had been through it, and came out okay. I’m sure you all know about and have read the horror stories on message boards and other blogs.
As someone who gained 80 pounds, and then lost 70 over the course of my treatment weight gain was something that I was very worried about. Which is why I’m here to say that it hasn’t been a problem for me at all.
I’ve finally been able to maintain my current weight, and able to lose the safe amount of 5 pounds in 3 months. It’s been so nice not gaining 20 pounds here, losing 30 pounds there.
I finally feel like I have a constant flow of energy; I no longer feel extremely lethargic or so anxious from having too much energy.
For the first time since I was diagnosed with Hashimoto’s I finally feel like I have control over my body, and I am finally at peace with it.
I also made the decision to change my major to nursing, and will transferring to nursing school this fall!
At my three-month post op visit I’m happy to report that my TSH was literally PERFECT.
I apologize for the rather lengthy description, but from my experience in trying to find answers I figured it’s be best to give you all much more than you needed vs. not enough!
I wish all of you the best of luck whether you’ve decided on a thyroidectomy or not, and I hope my positive experience makes you all feel even the tiniest better!
If you would be interested in sharing your thryroidectomy experience, good or bad, then I would love to hear from you - please email [email protected] for more information if you are interested in guest posting!