Six years ago, I my feet were swelling, I was cold all the time, and I could sleep twenty-four hours a day every day. I had also joined Weight Watchers with some friends a year earlier and with no cheating lost only twenty pounds. They both had lost more than thirty pounds. I could not understand what was occurring with my body. Yes, I was older. Yes, I worked full-time and did not exercise as I should, but it still had me wondering what was going on with my body.
Receiving a mailing piece from Lifeline Screening, I thought I’d go. My thought process was around the scan for stroke potential more than anything else and that was due to my Dad having suffered two in an almost one-year period. Once at my screening, they asked if I wanted to add a thyroid screening for an additional fee. In the back of my head, I could hear my best friend telling me I had a thyroid issue because I eat hardly anything so of course, I added the thyroid screening.
Three months after the screening, the paperwork arrives from the tests. My Thyroid Stimulating Hormone (TSH) was over 62. That’s very high. Especially when the normal range for TSH is between three and seven. It was suggested that I call my doctor immediately and this began my thyroid journey.
I leveraged my family doctor for approximately six months and then at the suggestion of my sister-in-law, also a registered nurse, I moved to an endocrinologist. I was removed from my medication for my thyroid and then testing commenced. I was advised that I had the antibodies for both Hypothyroidism (underactive) and Hyperthyroidism (overactive). I was apparently a rare case because I had the antibodies for both.
Medications were administered with dosage changes occurring regularly and my TSH levels continued to vary. There was no steady reading of my TSH for months. They did a test to determine uptake with radioactive iodine and afterwards, the recommendation was that I have my thyroid removed. Four years ago, I had a thyroidectomy.
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Meanwhile, my eyes were changing and by changing, I mean they were protruding from my eye socket. They continued to get worse which meant I wasn’t wearing contacts anymore nor was I bothering with eye make-up. Why call attention to my bug eyes?
I was at a family gathering and my sister made a comment that my eyes were worse. It was this comment that had me contacting the Scheie Eye Institute.
Meanwhile, I learned that stress increases the antibodies that attack the fat pads behind the eyes which pushes the eyeball out of the socket (Thyroid Eye Disease/Graves). Guess who had a stressful job? Learning this translated to me that my eyes were never returning to normal.
At Scheie I learned there is a surgery that can address the protrusion, but it involves cracking the eye socket and then removing the fat pads from behind the eyes. Crack my eye socket? I don’t know about you but that sent me over the edge. I of course, then went to the internet to look at the surgery which did NOT help the case.
We continued to make quarterly visits to Scheie where they monitored my eyes and took measurements along with pictures. I was told that the surgery couldn’t be performed until my antibodies stopped increasing because it would negatively impact my healing. By this time, I could not wear my glasses on the bridge of my nose because of the severity of the protrusion in my left eye. Then my right eye began to protrude too.
Last December, my doctor at Scheie informed me that a trial just finished, and the results of the trial were positive. She scheduled me to meet with the Thyroid Eye Group so they could determine if I was a fit for this new treatment. That meeting occurred in March and I it was determined I was a fit.
At the end of April, I had my first of eight Tepezza infusions. There are numerous side effects that accompany the drug but if it meant my eyes would be normal without cracking my eye socket, I didn’t care. My last infusion occurred the end of September and I am pleased to say that my right eye is now normal. My left eye still protrudes but nowhere near the extent it did before the infusions. I can wear my glasses on the bridge of my nose again. I cannot tell you how awesome a feel that is to me!
I do not have my stressful job anymore although some days, the feedback to my writing stresses me but nowhere near the stress of my previous corporate job. Based on the testing results from Tepezza, my eyes should remain this way the rest of my life. Life is good!
Any questions regarding my journey, please feel free to ask!