To skip to this blog and read about the actual surgery and recovery (with photos), click here: Life After Thyroidectomy & Parathyroidectomy.
As you may have read in my previous blog, I had Grave’s Disease (hyperthyroidism) as a teenager, and had toxic multi-nodular goiter (which is, in a nutshell, an enlarged thyroid with nodules on it, that produces too much thyroid hormone). After taking PTU and Synthroid medications for about a year, and not seeing any changes, my doctor decided it was time for the Radioactive Iodine Treatment (“RAI”).
RAI treatment consists of a large radioactive pill that a doctor drops down your hatch while donning special gloves to protect themselves from the radiation. They don’t want it to touch your mouth, and can only touch your throat enough for you to swallow, due to its radioactivity. Sort of scary…not gonna lie.
For the following 3 days, I was to flush the toilet three times each time I used it. I could only use plasticware and disposable plates when I ate and I couldn’t sit next to anyone who was pregnant. Yikes!! I didn’t glow, nor was I green, but apparently I was dangerous to an unborn fetus outside my own body! This whole ordeal was meant to stop my thyroid from overproducing thyroid hormone. And, it worked! For the most part…
All was well in the thyroid department for the next 23 years – or so it seemed. My goiter stopped overproducing thyroid hormone, which was great, an and added bonus was that my thyroid didn’t become hypo (which normally happens to patients who have this treatment). I think the goiter even shrunk a little after treatment.
Now, rewind to about 10 years ago. I began experiencing annoying symptoms that no one could explain. My leg muscles were always cramping. My anxiety had gotten worse. I was extremely fatigued, often depressed, and rarely wanted to clean my house or go out with friends. Over the years, more symptoms were added to the list. Below is my running list of symptoms (the list isn’t conclusive to the actual disease – there are a few others that I never acquired – thank the Lord):
– extreme fatigue (even brushing my hair poops me out)
– GERD (acid reflux) (diagnosed and taking Omeprazole)
– depression (let’s not even go there)
– anxiety (waking up every morning with a nervous stomach ache, fears, inner shaking and sometimes hand tremors)
– hair loss (pony tail? more like a weathered paintbrush)
– brain fog/confusion (bosses think I’m an airhead)
– memory loss (I’m apparently a very large goldfish)
– frequent urination (I should set up my work computer in the stall)
– constant thirst/dry mouth (drinking so much water makes frequent urination even frequent-er)
– dry, scratchy eyes (some mornings, my lids literally are stuck to my eyeball)
– stomach issues (let’s not even go there)
– hoarse/scratchy throat/voice (no, not the sexy kind – the phleghmy, groggy kind)
– trouble sleeping (due to frequent urination all through the night)
– irritability (sorry, hubs!! I’ll be normal soon, I hope!)
– muscle & joint aches (I’m only 39!)
– frequent headaches (sort of dull, and sometimes daily)
Over the years, my previous doctor would test my thyroid hormone, to see if my thyroid was over- or under-producing thyroid hormone. The results always came back normal, and so I assume the doctor (and possibly friends and family members) thought my bodily complaints were all in my head. I mean, I constantly Googled my symptoms, always trying to find a diagnosis. I’m sure the word “hypochondriac” came up in conversation when I wasn’t around. I didn’t care – I knew there was something wrong with me and I was determined to figure it out.
Finally, in October 2017, after the frequent urination was just ridiculous (I’d go 20-30x in a 24 hour period), I decided to get a ton of blood tests to see if I had diabetes. Frequent urination is a symptom of diabetes, and we have a lot of diabetes in our family. I figured I was bound to get it at some point. It had also been 2 years since I’d had a complete blood workup, so…
My blood tests came back “prediabetes,” but that didn’t concern my doctor. He was more concerned with my consistent abnormal calcium level. It had been high in 2014, 2015 and again in 2017. He wasn’t my Endocrinologist before 2014 (I skipped seeing one for many years, so I am guessing my levels have been high for at least 10 years). I also had low Vitamin D. He was concerned about the frequent urination, high calcium and low vitamin D, so he sent me back for a PTH test, which tests for raised parathyroid hormone in your blood.
Being an avid, self-professed, online medical researcher (i.e. “Compulsive Googler”), I found out that high calcium, high PTH hormone and low Vitamin D means that you have a disease called Hyperparathyroidism. Hyperparathyroidism basically means you have a tumor on one…or two…or theee…or four of your 4 parathyroid glands. It’s most common to only have one parathyroid tumor, but some have multiple diseased glands.
This disease is slow progressing, but in time it can cause major problems if you don’t get it taken care of. Problems such as osteoporosis, osteopenia, cardiac issues, kidney failure and more.
From my limited understanding of biology, and proficient Googling abilities (don’t laugh), these parathyroid tumors cause the overproduction of parathyroid hormone. This will cause calcium and phosphorus to be pulled from your bones – not good. You can’t absorb the calcium, and so it floats around in your blood, wreaking havoc and causing annoying symptoms. This is called hypercalcemia. This leads to bone loss and that is where the osteoporosis can come into play. I have never had a bone density scan (DEXA) done, so I don’t know how my bones are, except for the fact that my dentist keeps telling me how much bone loss they notice at every one of my dental visits.
This extra calcium can even attach to various tissues in your body and cause calcification of that tissue. Basically, it’s like growing a tooth over your organ! (I’m sorry if you have nightmares tonight…). One of my thyroid nodules was calcified. Parathyroid tumors must be removed. Surgery is the only treatment for them.
I am eternally grateful that my primary car physician noticed the high calcium levels in my bloodwork, and catching this before I spent any more precious years feeling miserable. Please, if you have any of these symptoms, and no one can figure out what’s wrong with you, please advocate for yourself and ask your doctor to order blood tests for Calcium, Vitamin D and PTH. If your doctor won’t do it, find a new doctor. Seriously. Or, if your doctor says “let’s keep an eye on it,” so you can go longer feeling miserable…find a new doctor. Unfortunately, there are many endocrinologists out there who will only go by the numbers, and not consider a patient’s symptoms. This should not be happening. If you don’t have any good endocrinologists near you, but you believe you might have a parathyroid tumor, you can try contacting the Norman Parathyroid Center in Florida. They are experts in all things parathyroid.
Always read your bloodwork (if you can access it online like many medical groups are doing these days), and if any levels aren’t in the normal range – ask your doctor why. Again, if your doctor shrugs it off, find a new doctor!! See as many as you can until you get answers.
As a member of a parathyroid disease support group on Facebook, I’ve learned a lot from many poor souls who have experienced my same symptoms, but worse. Many of them have developed painful kidney stones due to the damage done to their kidneys from the excess calcium in their blood. Most people end up discovering they have a parathyroid tumors by accident – through a CT scan or blood test that they are getting for some other ailment.
So, once my doctor referred me to an Endocrinologist, everything starting coming to light – and fast! My blood tests confirmed I had hyperparathyroidism. That was the first step. The second step was to send me for a 4D-CT scan. This scan showed 2 parathyroid tumors. We wouldn’t know if I actually had 1 or 2 until I was actually opened up (they aren’t always correct). The third step was to refer me to a surgeon to remove the bugger(s). Being the proactive researcher that I am, I already did my homework and had already chosen my surgeon. If anyone was cutting my neck open, it would be one of the best in the Chicagoland area: Dr. Steven DeJong at Loyola. He’d been doing these surgeries for over 25-30 years, and it appears he does them every week. That’s a lot of experience!
I met Dr. DeJong for a consultation and he spent a lot of time with me, showing me my CT and Ultrasound photos on the computer. He basically told me that my thyroid/goiter was the size of his fist, and that it had started growing down into my sternum. Oh my wow – a little freaked at this point. This meant that I didn’t just need to have 1 (or 2) parathyroid tumors removed (which would have been a quick non-invasive surgery), but I needed my entire thyroid removed, and 1 or 2 parathyroid glands that contained tumors. This was more involved than I imagined, but I trusted him and agreed to schedule surgery for January 11, 2018.
Removal of the entire thyroid will mean that I need to supplement my body with a synthetic thyroid hormone for the rest of my life. Strangely, I know a lot of people who have had this surgery, and who are on this drug. I’m not worried about that. What gives me the creeps is that there is always a possibility of malignancy, AND there is always the possibility of complications during surgery. One complication would be permanently damaging the vocal cords.
So, being this is an essential oils-themed blogsite, I figured my surgery would be the perfect way to show off my favorite essential oils after surgery. I’ll use some for comfort and aches from the surgery it self, and then I’ll use skin, wound and scar-mending essential oils on the incision. I’ll be posting pictures of the progression of healing of my incision in a separate blog, once I get to that point. So if you are squeamish, you might not want to read my post-surgery blog.
Before the steri-tape is removed, I’ll be using a blend of essential oils, such as frankincense, lavender, helichrysum, rose, sandalwood and melaleuca around the area for inflammation, tenderness and skin recovery.
When the tape is removed, I’ll be using the same blend on the already-healing incision. I’m going to add some Vitamin E oil to the mix and also be using an “everything ointment,” which my company sells, that includes many of those same oils. They are all fabulous for skin repair/soothing.
You can also view my videos at my YouTube channel: Karen – Aromatherapy
Click here to read my post-op story and see all of my incision healing photos.
Member of National Association
for Holistic Aromatherapy