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In January 2018, had a total thyroidectomy and a parathyroidectomy and lived to tell about it. Below I’ll share with you as many details as I can remember (but my memory still isn’t the best – thanks to hyperparathyroidism!) I’m hoping to give hope to those having this procedure in the future. If you’re like me, you’ve been grasping for positive stories online – but you can’t find any, am I right?? That’s because there are very few positive stories online. There’s a much smaller percentage of people actually going online to tell their positive stories than negative ones. Remember that. 😉
I’ve had a multi-nodular goiter (a/k/a lumpy thyroid) for many years (over 20), and Grave’s Disease, which were treated in 1995 by radioactive iodine. More recently, my surgeon discovered the goiter was growing downward, under my sternum. It was also pushing on my windpipe causing me to cough a lot and making it hard to catch my breath. Doc said it would continue to grow if we didn’t remove the whole thing, which would be dangerous down the road.
I also had Primary Hyperparathyroidism, which is basically a tumor on one of your parathyroid glands. It is caused by the parathyroid gland producing too much PTH hormone. The only cure for primary hyperparathyroidism is to remove the tumor. So many people think they can naturally support their bodies and not need surgery. I’m sorry, but that isn’t the way parathyroid tumors work. They will slowly ruin your health if not removed.
I did not know if the goiter, nodules or parathyroid tumor were cancerous because I never got a chance to have a Fine Needle Aspiration biopsy on them. Fine by me! I was terrified of that needle for some reason. My surgeon, Dr. De Jong, said that since my whole thyroid needed to come out, it wasn’t necessary to biopsy anything. He would have my thyroid sent to pathology once it was out, and then we’d find out if it was malignant and go from there.
Apparently, the goiter was the size of my doctor’s fist. :-O At least, that’s what he told me from inspecting my neck. My incision was to be about 3 – 4″ long. He said that by looking at my neck from the outside, you could only see the tip of the iceberg. Nice visual. I was ready to get it all out and move on with my life. We booked surgery for a month out.
Ten days prior to surgery, I was asked to stop taking Advil and all herbal supplements. I hate missing 2 days of my fabo supplements (they hugely help my mood), let alone go completely off of them for 10 days! It was a bit rough because I rely on those supplements for mental clarity, stomach issues, energy and more. My head wasn’t very clear at work during those 10 days – but then my mind hasn’t been clear at work for a LONG time thanks to the 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 though… She was telling me how she has a horrible anxiety disorder, and so she had visibly shaky hands. I tried not to look nervous as her shaking hand came towards my vein with a needle! In my mind I was thinking, “aren’t nurses supposed to have steady hands??” Everything worked out though – blood was drawn and I lived to see another day.
January 11, 2018, (my thyroid and parathyroid eviction day!) came 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 being hypothyroid (weight gain, more depression, hair loss).
They wheeled me into a prep room where I put on a gown, hospital socks, a gigantic hospital maxi-pad (in case my period came during surgery) (sorry, TMI?). They also wrapped electronic massage sleeves around my calves that constantly squeezed and massaged my calves. This was to prevent blood clots. Dr. De Jong came to say hello and that he’d be ready for me in a few minutes.
Some people (nurses, medical students?) came by to wheel me away, but not before first putting a weird metallic shower cap hat on my head. Once I was in the operating room, they exchanged the metallic cap hat for a knit 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 was the last thing I remember before actually waking up in the recovery room after surgery. Surgery was over before I knew it and I was on to recovery. The surgery was apparently 3.5 hours long, and Dr. De Jong successfully removed the very large goiter and parathyroid tumor – leaving the 3 other parathyroids and vocal cords intact and in good shape. Thank God! If you have a poor surgeon, you may get damage to your vocal cords. Please do your research and find the best surgeon you possibly can.
I don’t remember much about waking up from anesthesia except that the nurse administering my pain meds wasn’t exactly a warm and fuzzy gal. (I thought nurses were supposed to be warm and caring?) I was drenched in sweat – dripping from my forehead down into my eyes. I felt disgusting. Oh, and guess what? Aunt Flo came to visit me DURING surgery (wasn’t that thoughtful of her??!!??). While I was trying to wake up from the anesthesia, I felt stabbing cramps in my uterus. Perfect timing… They couldn’t give me Advil, only Tylenol. So…essential oils to the rescue! Thankfully I’d brought a roller-ball blend of my female/hormonal support oils to ease my cramps (a mix of Geranium, Clary Sage, Lavender, Marjoram, should you want to make your own). 😉
Once I was more alert, I was wheeled into 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 too shabby! 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 foggy and sleepy from the anesthesia.
I don’t know if you are aware of this, but apparently some people can’t handle anesthesia, and they puke after surgery. Can you guess what type I am? That’s right – I’m 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 all over their nice sheets. After vomiting, my mind was clearer.
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 that were put down my throat during surgery. They brought me Cepacol lozenges to suck on for throat pain. Other than that, the only other issue I felt was a stiff/sore neck and weakness. The stiff neck is 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 – I need one of those for my house!
Below is a photo of me not long after I puked. Still out of it, but forcing myself to smile…because you can’t take a picture without smiling. Well, you can, but I usually don’t. It’s not very often that I will share a photo of myself without any makeup on, so you’ll notice this particular photo is extra small compared to 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 was wiped.
I was starting to get hungry but could only order from the liquid diet portion of the menu. Chicken broth and Jell-O sounded the least likely to induce vomiting, so that was dinner. It was horrible – but can you really expect anything more from a hospital? You basically get a bowl of broth, with a packet of protein powder to mix in. It was like eating Ramen noodles….minus the noodles. All salt.
The nurses gave me Tums to chew on 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 in regulating my calcium level. You don’t want to have low calcium in your blood. It causes hypocalcemia, which is very dangerous. I won’t get into that now, but it’s a serious issue.
My husband and I watched TV – sort of – I kept nodding off. When he had to leave for the night, I tried to get some sleep – but everyone knows you don’t sleep much 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 somehow the night went by pretty quick. Though weak, I had to keep trying to get myself up and walk to the restroom out in the hall. I had to remember to hold my gown tight so I didn’t give the other patients a “show”! Before I knew it, it was morning and I was hungry! I ordered an oatmeal and a yogurt and ate about half of each. A nurse came by and gave me my very first Levothyroxine pill, which I was told I would be taking for the rest of my life. “Hello Levo, so 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 before I got it, or if a family of skunks had burrowed into my armpits and died. I just knew 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 with that pink junk soap, and asked a nurse for a fresh gown. Muuuuch better. I smelled like a human, and even put on a little makeup to make myself feel better.
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 what?!! I apparently said that out loud – not just in my head – so she made some type of comment about how “I wasn’t scared, was I?” I’m no baby, but I did have to squeeze a pillow while she plucked each one out. It pinched a little bit when she tugged on them. That last one stuuuung! It was stubborn and didn’t want to come out. They remove stitches the day after surgery so that the scar is less noticeable – totally fine by me.
My husband arrived that morning and we watched a little TV until I was able to leave. The nurse came by and 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.! I couldn’t wait to get home – I missed my kitties…and my cozy new pajamas and comfy couch. A very nice nurse took me down to the hospital entrance in a wheelchair. Wheeee!! 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. My husband took my arm and lead me into the house. Then he led me straight to the couch – where I would spend the next couple of weeks watching TV.
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 so that the water didn’t soak the steri-strips. I need the help of my husband because it was a lot of work and I was still weak. 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 without paper towels and hospital soap! 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 soft foods for the first few days. By the 3rd day or so, I grew tired of yogurt so we ordered pizza! Probably not the best idea, but my throat felt a little better and I needed something tasty.
Note: You’ll have a bunch of disgusting yellow mucous stuck in your throat. You need to get that out. You don’t want it getting into your lungs. So, hopefully your surgeon will give you a breathing tube (which looks sort of like illegal drug paraphernalia), that seems to help it come up.
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 kept coming back throughout the day. I had to keep rubbing a blend of essential oils to relax my legs. It helped a ton, 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, which helped.
My sister came to visit me on my 4th day post-op. We ended up talking too much, as I normally do, and it irritated my throat. I started to feel something swell inside my throat. It felt like a little ball was inside my throat every time I swallowed. I freaked out and thought I was having a side effect from the Rocaltrol (“throat swelling”), so I called the nurse. She assured me that it wasn’t going to be the death of me. She explained that they have to cut through a pretty thick muscle in order to remove the thyroid. Ewwww. Apparently that muscle gets “angry” for being disturbed and takes a little time to heal. I didn’t need to hear this.
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. I tried to do as little 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 OnDemand 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 looked like once removed.
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 – not 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 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. The steri-strips had irritated the skin around my incision, and so it was super sensitive and irritated easily. Knowing how potent essential oils are, I decided to back off of them for a bit, 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 hadn’t begun using a scar-diminishing oil, such as Neroli, 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. Durrr.
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. Don’t bother with the Scar Away silicone patches. Maybe they work on some people, but they irritated my skin.
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 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 one day.
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!
UPDATE: It’s been close to 3 months, and here’s how my incision is healing. This is with massaging Neroli oil into the healed scar 3x per day:
Other changes include: hair loss, hypo fatigue, 5 more lbs of weight gain. and depression and moodiness. Dr. De Jong switched me over to the name-brand, Synthroid, and increased my dosage to 112, so I’m hoping this regulates me. I miss going to the gym!
But, this is life, and I’m glad I had the surgery. I would rather deal with meds, than have my goiter continue to grow down into my chest.
2nd UPDATE: It’s been just over 4 months, and I’ve had some ups and downs. I’ve gained a total of 9 pounds (not bad) after surgery. Brain fog was gone for a bit, but it’s back somewhat. I have no motivation to go to the gym nor do I have motivation to clean my house (but who does!?). I have lost a lot of hair. It doesn’t come out in huge clumps, but every day I lose way more than I used to. I don’t know if this is from the shock of surgery (surgery can cause hair loss out within a few months of the procedure), or if it is from Hypothyroidism – either way, it stinks. My hair was fine and limp to begin with. Now it’s fine, limp and thinning. Lovely. I sleep pretty well, but wake up exhausted and weak – as if I didn’t sleep at all.
So, I kept hearing/reading about how many people do better on T3 medications, like Cytomel, when taken in combination with their T4 medicine, like Synthroid. I asked my doctor for Cytomel, and he gave me a prescription to start on 5mcg per day. Within the first week, I started getting headaches, I felt wired but fatigued at the same time (how is that possible?!?), I was having hot flashes, my brain felt heavy/foggy, my legs seemed a little crampy, I was irritable (on a recent date night, I almost jumped out of our truck and verbally attacked the person that cut us off in the mall parking lot – SO not me!), and I had serious worsening of my depression and anxiety. My doctor told me to stop taking it, and he increased my Synthroid to 125 mcg instead. I’m hoping and praying that I finally start to feel some energy and that my mood lifts, so that I don’t lose my mind and actually attack someone!
While I am not a fan of most Endocrinologists, mine seems to be doing a pretty good job. I’m grateful that he at least listened to me when I asked to try Cytomel, and didn’t shrug off my request. I think I’ll let him be the doctor next time and listen to his suggestion!
Here’s a recent photo of my scar. I covered it a little with makeup this morning:
It’s been 5.5 months since my surgery. Since the increase to 125 Synthroid, I lost a few pounds, but basically feel the same. Perhaps a tiny big less depressed. I left a message with the nurse today to ask my doctor if he would increase my dosage to 137, even though it’s only been 5 weeks since the last increase. I want energy!! And, I want my hair to stop falling out!
7 Months Post-Op Update
It’s been 7 months since surgery, and I’m finally feeling better! I believe I’m now on the right dosage of medication – which is .125 of Synthroid. Hallelujah, praise the Lord!
My scar is looking a little better – unless that’s because I dabbed some makeup on it this morning? Sometimes I hate the way it looks, and other times I just don’t care. I mean, getting that huge thing out of my neck was the best thing I ever did, and most likely saved me from an earlier death, so I can’t complain about a scar, can I!?!
I copied the list of symptoms from my older blog and noted the improvements next to each. Here’s what’s up:
– Extreme fatigue – GONE! Still a little tired – but I’m 40 years old now, so…
– GERD – still have it, but I’m off Omeprazole and managing it with essential oils.
– Depression – somewhat improved.
– Anxiety – somewhat improved.
– Hair loss – finally slowed down! I was losing chunks for a while there.
– Brain fog/confusion – much better! I finally don’t feel like an idiot.
– Memory loss – improved in some areas, but not others.
– Frequent urination – GONE!
– Constant thirst/dry mouth – GONE!
– Dry/scratchy eyes – GONE! I can wear contacts (the “moist” kind) again.
– Stomach issues – improved with essential oils use, but still bloat if I don’t use my oils.
– Hoarse/scratchy throat/voice – GONE!
– Trouble sleeping – only when I eat too much before bed.
– Irritability – GONE! (except for when I’m hangry and tired!)
– Muscle & joint aches – mostly GONE! (still taking Boron for aches)
– Frequent headaches – GONE!
It’s so odd to me to read these symptoms now, because I don’t even remember having some of them! These symptoms were mostly caused by my parathyroid tumor, but some were hypothyroid symptoms from having my thyroid removed.
My doc ordered blood tests the other day and I got my results within 24 hours. My levels are all normal, and he wants me to continue with this dosage until something changes. I’m hoping and praying that my symptoms continue to improve, but for the most part, I’m all good.
So, this is happening:
I think these are new baby hairs growing back after losing so much from hypothyroidism and the shock surgery had on my body. I’m so happy to see them, although they are almost impossible to tame throughout the day! My hair used to come out in clumps, and now I may find 5-10 hairs on my comb each morning after I use it.
I can only see my symptoms improving from this point forward.
If you’ve recently had this surgery, or had it in the past, will you please comment below and let me know how you are doing? I know our bodies are all different, but I’d like to hopefully hear some positive stories about depression going away and weight loss after Synthroid regulates!
God bless and make sure you check your TSH and calcium levels whenever you get a blood test!
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for Holistic Aromatherapy