Being diagnosed with a toxic nodular goiter, I was given Tapazole to help with the hyper thyroid symptoms. It is an anti-thyroid medication to stop the production of thyroid hormone. I was told that my heart palpitations, diarrhea, shaking hands and heated body were all symptoms that would be relieved once the meds kicked in. What I didn’t know at the time was that the dose that I was given would slow everything down to a halt. The first surgeon (small town doc) that I saw informed me that my goiter was actually wrapping around my trachea and I needed to have it removed but he wouldn’t be able to do it as it was out of his realm. He would forward me to an ENT in the big city, who would be doing my surgery. In the meantime, I was to stay on the medication. My levels seemed too hyper to have surgery at any time soon until my thyroid was at normal range. The fear was “THYROID STORM”.
My mother has dealt with thyroid issues for her entire life with Graves disease. Shes had her thyroid removed 2x and its grown back 3x. She has also had 2 thyroid storms in the past, one that almost took her from us. It was the great surgeon and endocrinologist that saved her from it. Thyroid storm was something I was aware of. She is now on an Anti-thyroid medication for life, as her thyroid grew back to hyper and she didn’t want to risk having a 3rd surgery.
**Thyroid storm** – is a life-threatening health condition that is associated with untreated or under treated hyperthyroidism. During thyroid storm, an individual’s heart rate, blood pressure, and body temperature can soar to dangerously high.. This can happen any time the body is under stress, Like a surgery or after RAI
I religiously took the meds to slow things down so I could have surgery. I was told I’d feel better. I got tired, sluggish, drained. I started working out less because I had no energy. Didn’t the Dr tell me I would be feeling better?? At this point, I still didn’t know very much about the fundamentals of thyroid function and didn’t realize the Dr was medicating me based on TSH alone.. Big no no!!!! I now am aware that thyroid function is free T4 and free T3. Not just TSH.. ugh. The meds were forcing my body into a hypo state that was unnecessary. Looking back, oh how I would have responded differently!!
Finally got in to see 1st ENT – Dr. H. He was very young, knowledgeable and checked out the situation. My throat was becoming remarkable more swollen, coughing was more prominent and I choked on pretty much anything.. especially meat and bread. First thing he wanted to do was send me for another thyroid scan at nuclear med dept to find out why my thyroid was being so ridiculous. Been here, done this thing called thyroid scan. No biggie.. right?? wrong!! This time it was a bit different. the nuclear medicine department at this major city was bigger than the smaller city I went to the first time around. I took my small dose of RAI the Thursday, had some scans, an injection, more scan and then asked to come back next day for final scan. When I returned for day 2, one of the nuclear medicine drs brought me into the doctors area to review my scan from the day before. She showed me the coolest looking scan of my thyroid, I wish I could have kept it. The right side of my thyroid was almost white which means its not functioning, the nodules were all light grey on that side. The left thyroid lobe was big black round images that went right up my neck. She said that the left side was way over functioning and there was very large nodules with a high uptake of the iodine. She was surprised that I was on tapazole as that should have been lowering the uptake and also surprised that the right side came back negative for cancer. She said that because of the large uptake on the left side, she was going to suggest RAI ablation to the surgeon as there is a very good chance of a “thyroid storm” (there is that word again), if I had surgery first. My dad had come with me that day and we were both pretty surprised at the news and the fact I got to see my scan that day. maybe Dr’s in the big city are different?? 🙂
First ENT surgeon Dr. H had my husband and I come back to see him. Only to tell us that because of the size of the nodule, and the fact that I was a high risk for a thyroid storm, he wouldn’t be able to do the surgery but he was sending me to the only Dr who could take this on successfully.. we will call him Dr McCutie.. (really is). Apparently this Dr is the best all around these parts and further. I was quite happy that he was going to be my potential surgeon!! Dr H had also set me up with a great Endo and they fast tracked the appointment, so I saw her within 2 weeks.
We met endo who right away pulled me off of Tapazole. She wasn’t impressed that I was on it to begin with.. Who medicates based on TSH alone??? right??? Then she explained that the only way surgery would be able to move forward is if we can calm George (thyroid) down. She sent away the request for the RAI ablation. My husband was there with me and we left feeling great about her ( I do really like her a lot)but was so unsure about the RAI. Other than a pamphlet that we got sent home with, I was green around the ears with information on this..