So I recently had a total thyroidectomy and sub-total parathyroidectomy and lived to tell about it. Below I’ll share with you as many details as I can remember (my memory still isn’t the best, but hoping that will improve in time!) in order to give some insight into the experience for those having this procedure in the future. If you’re like me, you have been grasping for positive stories online, but can’t find any! That’s because there are very few positive stories online. You will mainly find horror stories from the small percentage of thyroidless folk who had a bad experience.
First, I have to mention that I’ve had multi-nodular goiter for many years, and now it was growing downward under my sternum. It was pushing on my windpipe and would continue to grow if we didn’t remove it. I also had hyperparathyroidism, which is a tumor on one of your parathyroid glands. The only cure for hyperparathyroidism is to remove the tumor. I never had a fine needle biopsy, so I did not know if the goiter, nodules or tumor were cancerous. I knew it all needed to come out, so we figured (me and my surgeon) we’d find out if it was cancerous once it was out. And if it was cancerous, we’d go from there.
The surgeon said the goiter was the size of his fist, so my incision would be 3-4″ long. He said that you could only see the tip of the iceberg when you looked at my neck. The rest was inside, and growing downward. But that it was the reason I was having a hard time taking in deep breaths, and coughed all of the time. I was ready to get it out of there and move on with my life, so we booked surgery for 4 weeks out. I could have done it sooner but it would have landed on the week of Christmas, so we waited.
Ten days prior to surgery, I was told I needed to stop taking Advil and all of my herbal supplements. I hate missing 2 days of supplements (they hugely affect my mood), let alone go completely off of them for 10 days! It was a bit rough because I relied on those supplements for mental clarity, stomach issues, energy and more. My head wasn’t very clear at work during those days, but then my mind hasn’t been clear at work for a long time thanks to my darn parathyroid tumor!
Two weeks prior to surgery I went in for pre-anesthesia testing. They took 5-6 vials of blood to make sure I was healthy enough for surgery. They like to see where your hormone and calcium levels are. Makes sense. My poor nurse. She was telling me how she has horrible anxiety, and she had visibly shaky hands. I tried not to look nervous as her shaky hand put the needle in my arm. In my mind I was thinking “is this for real!?” Everything worked out, blood was drawn and I lived to see another day.
Thursday, January 11, 2018, (my thyroid and parathyroid eviction day!) was here before I knew it. I’d gotten a lot of prayer from a lot of people, and so I was as cool as a cucumber on my way to the hospital (I was ready to get this thing out of me). I wasn’t afraid of the surgery as much as I was the recovery and the thought of becoming hypothyroid.
They wheeled me into a prep room where I put on a gown, treaded hospital socks, a gigantic hospital maxi-pad just in case my period came during surgery (why yes, Aunt Flo did come to visit me on surgery day – how thoughtful of her, right????). They also wrapped massage sleeves around my calves that were plugged in and constantly massaged my calves. This was to prevent blood clots. My surgeon came by to say hello and that he was going to go change, and when he was done, he’d be ready for me.
Some people (nurses, medical students?) came to wheel me away, but first put a weird metallic shower cap type of hat on me. Once I was in the operating room, they exchanged that hat for a knit-type cap. I am not sure what that was all about…
After moving me to the operating table, they put a mask over my nose and mouth and asked me to breathe in deeply a few times. That’s the last thing I remember before waking up in the recovery room. It was over before I knew it and I was on to recovery! The surgery was apparently 3.5 hours long, and the surgeon successfully removed the very large goiter and parathyroid tumor, leaving the 3 other parathyroids and vocal cords intact and in good shape.
While I was trying to wake up from surgery, I came in and out of consciousness a bunch of times. I don’t remember much except that the nurse administering my pain meds wasn’t exactly warm and fuzzy. I was drenched in sweat – it was dripping from my forehead down into my eyes. I felt disgusting. Oh, and guess what? Aunt Flo came to visit me DURING surgery. While I was trying to wake up from the anesthesia, I felt stabbing pains in my uterus. Perfect timing for cramps – they couldn’t give me Advil – only Tylenol. The Tylenol helped the cramping some, but I could still feel an ache. Thankfully I’d brought a roller-ball blend of essential oils to ease my cramps! (A mix of Geranium, Clary Sage, Lavender, Marjoram).
Once I was more awake, I was put in a real recovery room where I would spend the night. I’d heard that you are usually in a room with a bunch of people, but I got a single room, with a TV and sink. Not bad! My husband arrived shortly thereafter, kissed me and sat down…and then I don’t remember much of what happened over the next hour or so. I was so out of it – the anesthesia had me foggy and sleepy.
I don’t know if you are aware of this, but apparently some people can’t handle anesthesia and puke after surgery. Can you guess type I am? That’s right, a puker. It is a good thing they put a vomit bucket on my lap right away. If it weren’t so easily accessible, I’d have made quite the mess! After vomiting, I felt a clearer and less sleepy. Thank God.
At this point, I didn’t feel any pain in my incision, but I did have a scratchy/sore throat. The sore throat was due to the breathing tube and camera tube they put down your throat during surgery. They brought me Cepacol lozenges to suck on as I needed them, which numbed the pain a bit. Other than that, the only other issue I felt was a stiff/sore neck and weakness. The stiff neck is apparently from how your head is positioned during surgery. I also had to keep the IV in my hand overnight just in case they needed to use it. And the massage sleeves were still pumping away at my calves.
Below is a photo of me not long after I puked. Still out of it, but forcing myself to smile…because I can’t take a picture without smiling. It’s just not right. It’s not very often that I will share a photo of myself without any makeup on, so you’ll notice I made this particular photo extra small as compared the rest. 😉
A few hours later I felt much more alert, so I took another photograph. This time my bandage had been removed and I forced an even bigger smile even though I still didn’t feel so hot.
I was starting to get hungry but could only order from the liquid diet portion of the hospital menu. Chicken broth and Jell-O sounded the least likely to induce vomiting, so my husband called in the order for me. It was horrible, but I wasn’t expecting much from a hospital. You basically get a bowl of broth, with a packet of protein powder to mix in. It was like eating a bowl of Ramen noodles….minus the noodles. Allll salt. I couldn’t even finish half the bowl, but I think that was mainly because I felt too weak to keep eating.
The nurses began giving me Tums to chew every few hours. This was to provide my body with calcium because my 3 remaining parathyroids still needed to “wake up” and start doing their job. You don’t want to have low calcium in your blood. It causes hypocalcemia, and that is very dangerous. It can even be deadly in extreme cases.
My husband and I watched TV, sort of – I kept nodding off. When he left for the night, I tried to get some sleep – but everyone knows you don’t sleep much when you’re in a hospital. Nurses came in every few hours to give me the Tums, take my vitals, take my blood, etc.
I don’t remember sleeping much, but the night went by pretty quick. Before I knew it, it was morning and I was hungry. I ordered an oatmeal and a yogurt and ate about half of it. A nurse came and gave me my very first Levothyroxine pill, which I was told I would be taking for the rest of my life. Hello Levo, it’s nice to meet you. We’re going to be lifelong friends…as long as you do your job and don’t jack me up.
At one point before my husband arrived, I got up to use the restroom and got a whiff of my armpits. Holy mother of pearl…it was horrible. I don’t know if the hospital gown hadn’t been properly washed after the previous patient, or if a family of skunks had burrowed into my armpits and died. All I knew was that I needed to freshen up quick – my husband was going to arrive soon and I didn’t want to smell like roadkill. Thankfully my room had a sink with handsoap and paper towels. I scrubbed my pits as best I could, and asked a nurse for a fresh gown. Muuuuch better. I smelled like a human, and even put on a little makeup.
One of the medical students came in that morning and says to me, “so, now we’re going to take out your stitches.” What the?! So soon?? She sort of condescendingly/jokingly made me feel like a baby for being shocked at that statement. So, since it had to be done, I squeezed a pillow while she plucked each one out and tossed them in a bowl. It didn’t hurt, but it pinched a little as she tugged on each one. The last one stung! It didn’t want to come out! They remove stitches the day after surgery so that the scar is less noticeable. Fine by me!
My husband arrived that morning and we watched a little TV until the nurse came to get me ready to head home. She gave me a prescription for Levothyroxine and post-surgery instructions to rest, drink lots of water, take 4-5 Ultra Strength Tums (1,000 mg) per day for the next week, etc., etc. We would discuss more at my 1 week follow-up appointment. I was given the go-ahead to get dressed and was able to leave around 10:00 a.m.! Couldn’t wait to get home – I missed my kitties…and my pajamas. A very nice nurse took me down to the hospital entrance in a wheelchair. Whee! It was the most fun I’d had in over 24 hours.
It was about 20 degrees and snowing that morning, and there was ice covering our parking lot, so my husband took my arm and lead me into the house. Then he led me to the couch – where I would spend the next couple of weeks watching cable and movies.
I felt pretty good the next morning, and so I was able to take a shower. But not without packaging and taping up my neck real nice so that the water didn’t soak the steri-strips. And not without the help of my husband. Here’s a lovely photo of me pre-shower:
It felt so good to wash off all hospital odor from my body – especially being able to wash my armpits the correct way! A little water ended up seeping in and touched my incision area, but all-in-all it was a productive first shower.
Below is a photo of my incision 2 days after my surgery. It wasn’t looking so bad for only 2 days!
We purchased a bunch of applesauce and yogurt so that I could eat smooth foods for the first few days. But, by the 3rd day or so, I was tired of it and so we ordered pizza. My throat no longer hurt and I was ready to eat something tasty!
On the 4th day post-surgery, I felt pretty good. I had some irritating leg cramping, and so the nurse called in a prescription for Rocaltrol, which was an active form of Vitamin D. It seemed to help the cramping a bit, but it came back here and there. I had to keep rubbing a blend of essential oils to relax my legs. It helped, but I didn’t want to keep doing that every few hours! Eventually it subsided and the cramping stopped. I think part of the cramping was due to inactivity. Sitting on the couch for 4 days wasn’t good for circulation or my leg muscles. I got up and walked in place for a bit and that really seemed to help.
My sister came to visit me on my 4th day post-op. We ended up talking too much, and I started to feel something swell in my throat. It felt like there was a little ball in there. I freaked out and thought I was having one of the bad side effects from the Rocaltrol (“throat swelling”), so I called the nurse. She assured me that it was only due to the thick muscle that they had to cut in order to remove my thyroid. Apparently it gets “angry” for being disturbed, and that it would eventually go away. As I relaxed and stopped talking so much, it faded away.
Below is a picture of my 4th day post-op incision. It was healing up pretty nicely:
As the days progressed, it was easier for me to get around and do a few small chores, without lifting anything over 10 lbs. But I tried to do as little as possible, and lie on the couch as much as possible. You know what? Cable TV stinks. They replay episodes over and over and OVER. I was incredibly bored. I literally spent most of my mornings searching On Demand for movies, without actually deciding upon one.
I don’t remember what day it was, when I got the surgical pathology results, but when they came in, it showed that everything was BENIGN! Praise God!
Below is a photo of my incision on my 5th day post-op. Just a couple of days before my 1 week post-surgery appointment with the surgeon. He would be removing my steri-strips, and I couldn’t wait to see what it would look like once they were removed. It was looking pretty good already!
I saw my surgeon a week after surgery for my 1-week follow up. One of the medical students removed my steri-strips and I checked myself out in their mirror. It wasn’t looking so bad! It felt less tight, but I still felt like my neck was pulling if I moved my head around.
A few of days later, my incision was looking even better. See the photo below. Some of the scabs had come off with the steri-strips when they removed them.
At this point (10 days post-op), I started to do what my surgeon told me to do. And that was to gently massage Vitamin E oil above and below the incision for 2 minutes at a time, twice a day for two months. He told me that it was better to rub it above and below, versus on top of the incision, and that it would heal beautifully.
The Vitamin E oil I had at home was incredibly sticky, so I switched to rosehip seed oil and a blend of essential oils: helichrysum, frankincense, lavender and a skin blend that my company makes. I think the steri-strips irritated my skin because it was very sensitive all around the incision. Knowing how potent essential oils are, I decided to back off of them for a day, to let the sensitivity/redness go down.
Once the sensitivity healed up, I began using organic calendula oil, which is very soothing to skin, along with a with a drop of copaiba essential oil. This didn’t irritate my incision, so I kept doing it every day from this point forward.
It’s now been 4 weeks since my surgery, and the photo below shows my scar looking a lot darker and more pronounced than it did a week ago! I’m not sure if this is because I haven’t used a scar-diminishing essential oil, such as Neroli on it, or if I stretched it out somehow? I think when I took the above photo, I may have had the “skin toning” feature on that blurred out skin imperfections!
Now that the incision is sealed and healed, I’m going to start massaging Neroli oil into it 3 times a day. I don’t want it getting any darker than it already is. I bought the reusable/removable Scar Away silicone patches that everyone keeps talking about, but am holding out using them because I want to use Neroli oil as much as possible.
Now that it’s been a month since my surgery, and I’m back at work (returned after 3 weeks), I am feeling pretty good. Some days I feel achy/fatigued, and other days I feel fine. My main complaints are moodiness and depressive episodes, anxiety, fatigue and some body aches (feeling like I have a fever), cold feet and restless legs. The cold feet has been improving a bit over the last week or so. I’ve had depression and anxiety for over 20 years, so I am not sure either of those will ever improve.
I don’t think I’ve lost any extra hair, and I have only gained 3-4 lbs (but I’d lost that exact amount right after surgery, so I guess I’m just getting it back by eating too much junk food!). I believe my surgeon said they would probably be increasing my Levothyroxine at my next appointment in 2 months. I am hoping once they do that, my hormones will regulate and the remaining symptoms will improve. I’m currently taking 100 Levothyroxine, and 2 Calcitrol +D supplements per day. But that may change at my next appointment. I’m staying positive because the surgery was a success, so I know that future healing will be a success as well.
So far, at 4 weeks post-op, some of the symptoms that I used to have due to my hyperparathyroid tumor have begun to improve. Such as:
- Frequent urination (I go much less often – almost normal now)
- Extreme thirst/dry mouth
- Brain fog/confusion (feeling somewhat clearer and able to focus better)
- Breathing better (no more goiter pushing against my windpipe!)
- A tad more energy
- Joints not as achy when sitting still for too long
I’ve read that it can take up to 6 months to really notice improvements in symptoms after removal of a hyperparathyroid tumor, so I must be patient like grasshopper. It will come in time. I am praying I am one of the success stories of those who do great on synthetic thyroid hormone and can feel completely normal again.
If you’re about to have this surgery, please make sure you have a fantastic surgeon. Make sure you have help for the first few days post-surgery. And be sure to get a lot of rest, drink lots of water, and give yourself time to heal. Don’t rush back to work if you don’t have to. I pray your surgery goes well and that you have a positive story to share as well!