Sarah Claus, Thyroid Thrivers
37 years old
Grand Rapids, Michigan
Thyroid Cancer 2009
Postop Hyperparathyroidism 2012
Chronic Hypocalcimia 2013
I learned to except certain challenges that I will face in my life and how to let other things—things that are out of my control—go!
The emotion that surrounded that diagnosis is only something that others, who have had the same experience, can truly relate to. I have no doubt in my mind that my attitude of “I have cancer, but cancer does not have me” helped me through the worst of it. I was in shock that I was being asked to have my throat slit open, a strange fear that had plagued me since childhood. The week following the diagnosis was a whirlwind but in the end I had my Thyroid totally removed and my anesthesiologist, whom I knew, would later tell me it was the size of a California strawberry. I was then required to deplete my body’s entire store of thyroid hormone, in preparation for my radioactive iodine treatment. I am now more familiar with the term lethargy, more than you could ever imagine! My throat was sore but my energy level was scary, it was so low. It was exhausting to just stand up and head to the bathroom. But, I made it through. The radioactive iodine was a complete trip. The nurse giving me my first dose was going over all my instructions as she handed me a five pound lead cylinder that contained my pill. As she was talking, and I was contemplating what I was about to put into my body, I instinctively went to pour the pill into my hand. She literally jumped up and squealed and said “DON’T touch that, it’s radioactive!!!” Needless to say, it took me quite a few moments to put this pill into my mouth, to swallow.
Fast forward a few weeks to when I met my first endocrinologist, ever. This man, very well-known and respected in his field, sat across from me and my husband and while I was sharing my difficulties, cut me off and declared “Well are you going to have a good life, NO.” Everything he said after that point was a complete blur and sent me into a pretty dark place, both mentally and physically. I am so thankful that my husband refused to let me see him again. At that time in my life, we had traded places and he was now my support, where I had been just a few weeks prior when we lost his father.
The Old Me!
I tried to return to life as I knew it, coaching gymnastics and living my life the only way I ever had—at full strength. I ate healthier and exercised more, but had less strength and I began to experience muscle soreness and cramping, terrible cramping. My muscles would lock up and my hands and feet would go into strange spasms. I was seeing a new endocrinologist by now and was glad that he was, at least, not telling me I was going to have a horrible life. So, I settled in to find my new post-surgery life.
I got pregnant and the pregnancy was a healthy one! Whew! Other than the fact that my daughter was born almost three weeks early, the pregnancy went very smoothly. During which time, I had my levels checked almost every other week. I decided to leave my job coaching gymnastics. There were many reasons, but first and foremost, I was struggling to be the wife and mother I wanted to be, when I lacked the energy to do so. Also the repetitive motion of spotting ‘skills’, caused my muscles to ache and I felt it was, at some point, going to become a safety issue.
I stayed home with my daughter. This was very wonderful, but brief. The medical bills started mounting which caused me much guilt and anxiety. As well as the financial hardship I had put on us. I went back to work teaching preschool. All the time suffering from constant muscle cramping and soreness. My ENT seemed more concerned about it than my endocrinologist. By this point, I had settled into the mindset that it would always be this way so, why keep pushing the issue?
Then I got pregnant again and this time everything was not normal and it was not ok. At fifteen weeks, I suffered a severe bleed and the ER was prepared to send me home to miscarry. I protested that the sheer amount of blood that I had lost was frightening and after consulting with the nurses, my OB decided to admit me. While in the back of my mind I was continually thinking, there was no hope of carrying the baby to term. I had just seen the healthy heartbeat of my unborn son through the ER ultrasound—he was fighting to survive. Could I? Once in the care of the wonderful staff on the OB floor, I was taken by the hand and a nurse told me, never give up hope and that she had seen miracles happen. It was the first time I had even considered that I may not lose my son.
I finally learned that I had suffered a placental abruption and that the chances of me having him were very low. I was sent home after three days of waiting for me to abort. Much of that time spent without food and very little else, except IV fluids. It was heartbreaking. I needed to rest and would remain in bed for the remainder of my pregnancy. I had an appointment with a specialist every week. At all of those first appointments, we were given little to no hope and I was devastated. At 26 weeks, a specialist came in and said the bleed or shadow was gone, it had reabsorbed. He tried to come early and I was struggling. Finally, at 36 weeks it was determined that he was strong enough, measuring 9 pounds. We delivered by C-section at 37 weeks. A beautiful HEALTHY strapping 9.6 pounds of pure joy!!!
Can You Hear That?
I have to say that having been through six months of bed rest changes you, as have the rest of the experiences of my life. There was however something so terribly personal and intimate that I experienced during that time that it truly changed me and my expectations for and about my life and that of my family. I think I was being given a chance to learn that silence is okay, stillness is okay, being alone is okay. Anyone who knows me would tell you that I do not sit still well, I never have but when I was faced with being alone, hour after hour, day after day, I truly learned how to quiet my soul. I learned how to meditate and how to actually pray. Not that I would ever wish to repeat that experience, but I look back at it now, however difficult it was, and I appreciate it. I learned to except certain challenges that I will face in my life and how to let other things—things that are out of my control—go!
I’m a Healthy Sick Person?
Before I went on bed rest I was obsessed with the aches and pains in my muscles and joints. I was crabby and cranky but only when I came home, and that is the thing about our spouses. They see the real us. The one we can hide from the outside world, because let’s face it, none of us look sick. I actually had a well-meaning doctor tell me I was the healthiest sick person he had ever seen. I still don’t know how to take that comment…really! My husband has endured the worst of me and has not walked away and for that I am eternally grateful. I am not saying that this illness does not take a toll on him, it certainly does, but he is willing to travel this journey with me and I am forever thankful because this is such a difficult path to travel alone. Prior to my bed rest, I had talked at length about the difficulties I was facing, the cramping I was facing and the shaking in my hands. My endocrinologist started to really get under my skin, he kept saying that my results were within normal or acceptable range so I should not be experiencing these things…Okay, so I am lying to you? I need to explain that I also was diagnosed with postoperative hypoparathyroidism two years after my thyroid was removed. My tumor had a “hand” that was touching my parathyroid and during its removal my parathyroid was damaged. This is where my real issues now began. Because my parathyroid (we have 4) do not function. My body does not absorb calcium so I have to take between NINE and TWELVE horse capsules of calcium plus vitamin a day plus a drug called Calcitriol to bring that calcium into my blood stream. That is truly a pain. When I was young, I used to choke on one tiny junior aspirin and would prefer the chew-able version of pretty much anything. The body is amazing though, and I can now swallow four of those bad boys at a time. Even with all this extra calcium I suffer from hypocalcemia. That is why my muscles cramp and go into spasm but THIS endocrinologist is not who discovered or at least explained that to me. I had to get that from another one. Ugh!
I’m a Special Case!
My ENT who did my surgery and also found my tumor was not convinced that I was getting adequate care by my endocrinologist at that time and he asked my permission to send my case to the University of Michigan to their Endocrine department. He warned me that they only pick up a few cases and that it could take over two months to even hear back from them. I was called the same week and had my first appointment three weeks later. You see, less than two percent of the population who have gone through a total Thyroidectomy, thyroid cancer, suffer the symptoms and problems I was having, and they were interested. I saw my first Endocrinologist who specialized in Thyroid disorders and I learned A LOT. I was taken aback by his bedside manner, but I needed to hear what he was saying. He also put my arm in a cuff and waited to see my arm and hand go into spasm, something that infuriated me at the time. But, I had a lot of other things to be upset about, so I let it go.
I am now being treated much more aggressively and my levels are considered, but the question of how are you feeling is being taken very seriously. Finally! I still struggle with quite a few things, my energy level, my need to carry a small arsenal of drugs with me where ever I go, my inability to sit on the floor for long periods to play with my kids, the muscle cramping if my calcium gets to low or I sit, lay or move in certain ways, and the financial burden of being on so many medications. The hardest will always be in my outward physical appearance though, and the feeling of others not believing how bad I feel or how much pain I am experiencing.
After all, how could someone who looks so healthy be so sick?
No Blame Given!
Although I do not fault my ENT for the permanent damage to my parathyroid glands, it has caused a financial drain on myself and my husband. One prescription alone costs over $200 a month. Appointments to specialists are not exactly inexpensive either, but none the less are very necessary in my life, as well. I also struggle with my lack of energy, and to be freely intimate with my husband. In the beginning this was much more difficult because I couldn’t always find the words to be honest with him, but as our understanding of my condition became more accepted so did the understanding of the limitations that sometimes come with it. I truly feel that spouses should be given counseling or be given resources for support groups in learning to cope with a partner who suffers from autoimmune disease.
Really though, I am happier than I have been in years and I have a better outlook and stronger desire to live my life to the fullest every day even if my choices mean cutting back on work or leaving a job all together.
I am reminded through my experiences that we only get one shot at this life and that I am still living and that it is my choice—to enjoy my dance!
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I live in Grand Rapids and wondered if you had a specific Endocrinologist you would recommend?
Thanks for your comment and question. Actually, I am a Texan living in Costa Rica. So, I put together a great resource for Thyroid-Friendly Doctors… check it out: https://thyroidnation.com/thyroid-friendly-doctors/
I hope it helps! ~Danna