Hi, that’s me in the photo above – goiter and parathyroid tumors and all. According to my surgeon, this smallish visible bump is just “the tip of the iceberg.” Apparently, the rest of it is deeper inside and about the size of his fist! It’s also growing downward into the sternum towards my chest. I know…gross.
I’m hoping by writing about this, I can help others who might be in a similar situation, and are frustrated because their doctors can’t figure out what is making you so sick.
I’m also going to educate on how oils can be used post-surgery for comfort, wound soothing and scar diminishing. Rather than using drug store ointments, I will be using 100% pure essential oils and some extra carrier oils known for their skin benefits like Vitamin E and Rosehip seed oil. And documenting it all – mostly on my YouTube channel and my Facebook oils page, but I’ll put some in here too. 🙂
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). Scary stuff to hear as a kid! After taking PTU and Synthroid medications for about a year, and not getting any results, my doctor decided it was time for the Radioactive Iodine Treatment (“RAI”). RAI is a large radioactive pill that they drop down your hatch, while trying to not let it touch your mouth or anything else due to its radioactivity. Scary!
For the following 3 days, I was told by the doctor to flush the toilet a few times every 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 that was not even in my own body! This whole shebang was hopefully going 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 I thought. 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):
– 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 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 the frequent urination frequent-er!)
– dry, scratchy eyes (used Restasis for a few years)
– stomach issues (let’s not even go there)
– hoarse/scratchy throat/voice (no, not the sexy kind)
– trouble sleeping (due to frequent urination all through the night!)
– irritability (sorry, hubs!! I’ll be normal soon!)
– 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 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 sure my levels have been high for at least 10 years). Since my doc was concerned about the frequent urination and high calcium, he sent me back for a parathyroid hormone (“PTH”) test. This would test if I also had high levels of pth in my blood.
Being an avid, self-professed, online medical researcher (“Googler”), I found out that high calcium and high PTH hormones and discovered that if you have high levels of both, and also have low Vitamin D, you have a disease called Hyperparathyroidism and that means that you have a tumor on one…or two…or theee…or four of your 4 parathyroids. When you have 4 diseased parathyroid glands it’s called Hyperplasia.
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. If you have tumors on all 4 parathyroids, you have hyperplasia. Having 1 tumor is most common, but is less common the more parathyroids that have grown a tumor.
From my limited understanding of biology, and pfoficient Googling abilities, 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 done, so I don’t know how my bones are, except for the fact that my dentist keeps telling me how much bone loss I have 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…). These tumors need to be removed. Surgery is the only treatment for parathyroid tumors.
I am eternally grateful for my doctor noticing 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.
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. 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 by the excess calcium. And almost all of them can attest to the fact that this disease isn’t easily found by primary care physicians, or sometimes even your endocrinologist! Sad, right? Most will discover they have these tumors by accident – through CT scans or blood tests. And that is only if they have a well educated doctor who catches it.
So, once my doctor referred me to an Endocrinologist, it all started coming to light and fast. My blood tests confirmed that I had hyperparathyroidism. That was the first step. The second step was to send me for a 4D-CT scan. This scan showed that I had not only 1, but two parathyroid tumors. The third step was to refer me to a surgeon to remove the buggers. Being the proactive researcher that I am, I already did my homework and had already chosen the surgeon I wanted to use. If anyone was cutting my neck open, it would be one of the best in the Chicagoland area. Dr. Steven DeJong at Loyola.
I met Dr. De Jong 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. This mean that I didn’t just need to have the 2 parathyroid tumors removed (which would have been a quick non-invasive surgery), but I needed my entire thyroid removed, and also 2 of the parathyroid glands that contained the tumors. This was more involved than I imagined, but I trust 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. Thankfully my doctor is very experienced in this type of surgery, so I have full confidence in him.
So, being this is an essential oils-themed blog, I figured my surgery would be the perfect way to show off my favorite skin, wound and scar-mending essential oils, that I’ll be using on the incision. I’ll be posting pictures of the progression of healing of my incision further on down this blog, once I get to that point. So if you are squeamish, you might not want to read my post-surgery update.
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.
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.
I will also document this at my YouTube channel: Karen K. – Aromatherapy
TO BE CONTINUED…Look out for my surgery recovery blog next!
UPDATE: Here’s a video I made for my YouTube channel 4 days post-op.