I contributed this article to the Hypoparathyroidism Association newsletter in October 2016 and thought I’d share it with you.
—–
I recently had an experience that I wanted to share with my fellow Hypoparas. It had never happened to me before and I hope that it never happens again! Perhaps my recounting of the experience I had can help you understand what to look for in terms of symptoms if the same thing should ever happen to you.
At the beginning of September, I became severely nauseous, to the point where even water made me want to throw up. I didn’t eat much–some days almost nothing. This went on for two weeks. I lost ten pounds. This as you know if you’re hypothyroid, just doesn’t happen.
At the same time, I had issues with teeth in my upper jaw as well. Simultaneously I was cutting both upper wisdom teeth and squeezing the tooth next to them. I already had problems with receding gums as a result of radio-iodine therapy for thyroid cancer, which was now worsened by the teeth erupting through the gums. The dentist found evidence of decay on both sides of my jaw, despite all the diligent twice-daily flossing I’d been doing. He told me that the wisdom teeth and the teeth directly adjacent to them would have to be pulled.
Being hypocalcemic, there is always the possibility of dental carries with this condition. Knowing this I took it all in stride as par for the course. I also thought the nausea was tooth-related. Of course, severe nausea and the loss of that much weight should have been a red flag. I was tired, exhausted, not thinking straight, so the big picture escaped me. Also, since acquiring this condition, I had never had an extreme reaction like this, so I was a bit naive about it. I thought that I simply was not getting ENOUGH calcium. It never occurred to me that my blood had too much of the stuff.
Soon thereafter, bone pain began in my legs (knees to ankles). I also had trouble sleeping. My eyes were bloodshot all the time. I looked like a stoner. I was weak and listless and tired easily. Finally, on Sunday afternoon, September 18th, I was in so much pain, my husband decided it was time to go to the emergency room. Eight hours later, I was admitted with acute renal failure and hypercalcemia.
I was in the hospital for five days as they flushed my body with 1000ml bags of saline solution. I went through at least twelve bags by the time I left. Basically, for whatever reason, my hypocalcemic body flipped into being hypercalcemic, and my kidneys started shutting down, unable to cope with the elevated amount of calcium in my blood. My levels at admission were: calcium 14.5; creatinine 5.94; blood urea nitrogen 53; Glucose 117. My blood pressure was 198 over 84 and I was extremely dehydrated and basically, felt awful. When asked to rate my level of pain on a 10 scale, I rated it a 10.
I should point out that when I first arrived at the hospital, I wrote down that I was hypocalcemic and probably needed an IV. I had no idea that I had become hypercalcemic. The doctors assured me though that the symptoms of both hyper- and hypocalcemia can be similar and that I easily could have mistaken the two.
After a day or two of questions and research and back and forth between myself and the doctors, they told me that the nausea and bone pain were also symptoms of hypercalcemia. I didn’t know that. To this day, no one can tell me why my body did that. Sure, there were two days where I took some extra calcium thinking that I was severely hypocalcemic, but that didn’t account for what happened. My regular doctor is having me do blood tests more frequently to keep an eye on my levels now. Still, it was scary. And my poor husband…
I walk with a cane for now at least because the bone pain is still there (which means there is still excess calcium on my legs.) There’s nothing to be done but wait until it passes. There is no pain medication for bone pain, either. The most I can do is take something that will make me drowsy and think less of the pain. At least it’s not as bad as it was in the hospital.
I don’t know how long it will take to get back to normal, but at least I’m able to go to work, and I have lots of sick and vacation time I can use. I have a very sympathetic employer. I am quite fortunate for that.
Things to consider? Observe any changes in your “normal” physiological reactions. A fellow member of the Facebook Hypopara group said that with hypercalcemia, the symptoms often don’t show up until they’re extreme. So, if you’re feeling nauseous, have no appetite, and experiencing bone pain, feeling abnormally tired and cannot sleep, go see your doctor immediately. There is no such thing as being overcautious with this condition. Also, get your doctor to schedule regular blood tests, perhaps as often as every three months or even less if you have a history. You never know what can happen. I surely didn’t. I do now.
I’ve been singing since I was a little girl. Performing in front of people was one of the joys of my life. I played at festivals, fundraising events—anywhere I could. The energy from the interaction with the crowd and how they responded to me on stage made me feel at one with them.
In the summer of 2012, I did a few shows at the Five Spot. At the end of the last show, I noticed some tenderness in my throat and felt little bumps on each side. I thought that perhaps I’d been overdoing things, since each show was three hours long, with no breaks. But when I started having pain and becoming hoarse, I felt it was time to see a doctor.
I went to see an endocrinologist at Emory Midtown. She scheduled tests, including a biopsy. December 2012, my husband went with me to hear the results of the tests. The doctor flatly declared that I had cancer of the thyroid gland. Of course, this was the last thing either of us wanted to be told. The doctor then nonchalantly said, “So, we’ll do surgery.” No other options were offered, and in my ignorance I knew no better.
The endocrinologist gave me a list of doctors to choose from for the surgery. I picked one and had the operation scheduled for the third week in January 2013. Fine, but then I got a call from the surgeon’s office, asking if I wouldn’t mind changing the date. Okay, I thought, I get that people are busy. No problem. A few days probably won’t matter. Then they called me again, asking me to reschedule once more. At this point I was beginning to feel like a number. They were demonstrating that they had no respect for my life or me as a person. I had already received the dire diagnosis of cancer. I had job and family responsibilities to consider as well. And by now, I knew what I was going to be facing going through their course of “therapy”. I refused to change the appointment.
The doctor told me there was a 95 percent success rate for this kind of surgery. At first glance, that seems like an okay number, right? But when you look at where the thyroid is located, and how delicate that area is in relation to the surrounding glands and organs, that number starts to look a little less encouraging. The possible side effects for that seemingly small 5 percent include damage to the vocal cords and larynx and most importantly, damage to the parathyroid glands located proximate to the larger thyroid gland. The doctors told me that, even if anything happens to affect the other areas, those effects would be temporary and everything would go back to normal in a few months. The doctors made it sound so routine.
I had a total thyroidectomy on January 31, 2013. When I woke up after the surgery, I was hoarse and could only speak in whispers. I couldn’t regulate my breathing well as I spoke, so I sounded like I was constantly out of breath. Also, my face was tingling, a sign of hypocalcemia (low calcium). It was bad, but my husband and I were assured that it would only be temporary.
But it wasn’t temporary.
After six months with no change in my condition, the hypocalcemia (caused by damage to, or removal of, the parathyroid glands by the surgeon – in other words, surgical error) was considered permanent. Additionally and also due to surgical error, I was diagnosed with vocal paresis. I couldn’t answer the phones at work—part of my job—and conversation was very difficult. I was lucky they didn’t fire me. I spoke in whispers and double tones for almost a year, until I got some of my voice back. The voice therapist who I saw, by the way, was the ONLY doctor to actually help me positively in this process. Due in great part to that therapy, I am functional again. But even now, when I’m tired, I still go hoarse and parts of my voice disappear.
What I sounded like before surgery:
What I sounded like (speaking) after surgery:
What I sounded like singing some months after surgery in 2013:
Not being able to sing with the strength, volume and modulation I was used to was like losing a part of my soul. And as effective as the therapy was, it wasn’t the same. To this day, my full range is gone. Parts of the tone are missing. I get tired easily, so performing at night is out, and when I do a show, which is rare, it has to be in the daytime, and only short sets. Singing was my life—my pride and joy, and it was taken away from me because of surgical error. “Devastated” doesn’t begin to describe how I felt after that.
Also, the endocrinologist now had me on hormone replacement therapy using a synthetic thyroid hormone called Levothyroxin. This is standard treatment for thyroidectomy patients today. The hormones normally secreted by the thyroid regulate the body by controlling the body’s metabolism. Thyroid hormones affect your metabolism rate—how fast or slow your brain, heart, muscles, liver, and other parts of your body work.
The surgical error that removed or damaged the parathyroid glands has left me with a rare condition known as postsurgical hypoparathyroidism. In fact, nearly ALL cases of this condition are due to surgical error. This disorder is the root cause of the hypocalcemia I suffer, for which only recently meaningful steps are being taken to develop a hormone replacement therapy. There isn’t enough of a monetary incentive for the pharmaceutical companies to develop a hormone replacement therapy for it since it’s a rare disorder. http://rarediseases.org/rare-diseases/hypoparathyroidism/
So basically, I am on my own. I have to take megadoses of calcium and Calcitriol, a prescription vitamin D derivative for the rest of my life, along with the thyroid medication.
But there’s more. A few months after the surgery, I had to prepare for radio-iodine “therapy” to ablate (a fancy word for ‘kill off’) the rest of the thyroid tissue in my body. That meant I had to purge iodine from my diet, since the therapy involved giving me doses of radioactive iodine. This entailed a no-salt diet and the elimination of any foods known to contain iodine. Needless to say, leading up to this “therapy” I did on April 5th, my meals were bland. Since the treatment was radioactive, once I took the pill I had to stay at least six feet away from everyone for a week. I was at home the whole time and my husband would wave at me from across the room during this period. We used separate utensils, toilets, etc.
The first night after I took the pill, my cheeks swelled so much, I looked like Louis Armstrong blowing his trumpet. Since this “therapy” attacks the glands of the neck in particular, you need to drink a lot of water and stimulate the salivary glands with citrus to reduce the chance of salivary stones. I felt like I drank half the Chattahoochee River by the first morning. I was nauseous and didn’t sleep well. By the time the therapy was over, my face was back to normal, but I had permanent dry mouth from the damage it had done to the salivary glands. I lost my sense of taste for better than a month and some of the enamel on my teeth. To this day, I scream at the poor dental hygienist when she hits a sensitive spot. I don’t eat sweet things very often any more, either.
When I went back to the doctor and told her about the dry mouth, she basically said it was my fault, that I hadn’t drunk enough water. And over the next two years, even as they increased my Levothyroxin dose and managed my calcium intake, I kept feeling worse and worse. Depression was a constant, and my husband despaired at trying to help me cope. We did some research on our own to see if there were other thyroid treatment options that might work better, and perhaps give me more energy and help with my discomfort. If it were to continue as it was, I was going to end up on disability.
I had memory lapses (and still do), got confused easily, I often couldn’t understand simple things and couldn’t exercise at all, beyond the mile-long walk between the train station and my home. (We own no car.) That walk was now taking forever, because I had to walk so slowly, to conserve energy. I used to do half-marathons, and now I was being bested by a short walk down the street. It was distressing.
In our research, we discovered desiccated thyroid hormone (DTH), which is derived from animal thyroid tissue and not synthetic. (It seems that every animal on the planet uses the same hormone as we humans to regulate their metabolism.) DTH was used for thyroid disorders until around 50 or 60 years ago, when the drug companies came up with a synthetic version (to which they could hold the patent rights – they couldn’t patent an animal product, only the process of extraction). This was pushed as the recommended treatment, while natural thyroid hormone was shoved to the side and badmouthed as ineffective (this even though there was a long history of success with its use).
I brought my research on DTH to the doctor and asked her to consider changing what I was taking. She reacted with total disdain to the notion of going “back” to this old-fashioned therapy, that it would take too long to fix the dosage and any number of excuses for not trying it. She flatly refused to even consider it. I gave up trying.
At another point in that conversation, I told the doctor about how bad I felt, that I had aches and pains associated with the calcium disorder, but again, she told me that it was MY fault, that I wasn’t doing something right. (In fact, pain, muscle soreness, tetany and so forth are par for the course with hypocalcemia, even when taking the calcium supplements. Instead of recognizing the condition for what it was, she blamed the patient.)
In 2014, the endocrinologist said that I needed to do another radio-iodine treatment in order to judge the effectiveness of the previous radiation treatment. In other words, just to satisfy a need she felt to know about the treatment she had given me, which had only served to make my life worse after the botched surgery, she wanted to give me more of the same radioactive iodine. I told her “no way.” I’d had enough “therapy” and I would just deal with things as they were. If cancer was still present, so be it. The doctor didn’t like my response, and from that time forward, treated me like a recalcitrant child.
Finally, my husband and I decided to look into natural alternatives and try to find a doctor who would prescribe natural thyroid hormone. What did I have to lose? I was already miserable. We were financially able to do so in the summer of 2015 (my insurance did not cover naturopathic treatment), and now I’m doing much, much better with the DTH over the synthetic replacement. Also, the naturopaths I work with are looking holistically at my body, working on prevention and building my health naturally rather than just simply handing out pills. Medicating for them is a last resort.
I still take an amount of calcium equivalent to eight 1000 MG Tums every day along with 4 Calcitriol pills (the prescription Vitamin D). I try to find other forms of calcium to alternate with the TUMS since the side effects to the kidneys aren’t great. It’s a delicate balancing act between too little or too much. Too little, and I end up in the hospital with seizures. (Calcium has a direct effect on neurotransmission.)
I have to be very consistent about my rest schedule. I go to bed at 9pm and get up at 6:30am. If I don’t get enough sleep, I can’t function at work – or anywhere else for that matter. Everything I do has to be adjusted to fit the amount of energy I have available. I have learned over time what my limits are and I must stick to those limits rigidly. The desiccated thyroid hormone has given me more energy, but I’m not to where I once was, and likely never will be. So I work with what I’ve got, especially now that I know I’ve done everything I can do to find help.
Other side effects of dealing with hypocalcemia aside from memory loss and constant aches and pains include anxiety issues, irritability, dry skin and brittle hair…the list goes on. I have notes on my phone, on my computer at home and work, notes on the refrigerator—anything I can think of to help me remember important things. And sometimes, even those don’t work. What can you do?
Am I angry at what happened to me? I used to be. Should I have sued the surgeon? I could have. I had a case. But no, I did not and do not intend to do so. That would be negative and there’s enough of that in the world. Though I could use the money, I don’t need the karma. I’m just happy to be alive and as well as I can be.
And now, I’m focused on going home to my native Jamaica to create an album of music that celebrates all the love I have been shown during what I’ve gone through here, and to make a new start there. I am raising money for this and I can really use your help, if you are able, and I ask for your prayers for its success. Please check out my crowd fund campaign: https://www.indiegogo.com/projects/help-me-record-my-story-in-song-back-home/. It will go live on May 22nd.
