Long one today…….
I have gotten a lot of questions lately about the thyroid and my personal experience with a thyroidectomy. Here’s my full saga of having thyroid trouble and eventually surgery. Please Note: Once again, I am not a doctor and this post reflects my own medical history only. Ask your doctor for the best course of treatment.
2006 – During a routine physical my junior year of college, my general doctor found what felt like a lump on my thyroid. I knew my mother had a history of hyperthyroidism but had no idea what that meant. She recommended I get and ultrasound asap. While waiting for my ultrasound appointment, of course I googled what it could be. Lumps (cysts, nodules or goiters they are sometimes called) on your thyroid can be cancerous but most likely are not. They can make it hard to swallow, cause you to lose your voice or effect your blood work to show hypo or hyperthyroidism. My blood work came back norma,l but I was still fearing cancer as I was young and never had a serious medical issue before.
I had the ultrasound done and they found several small cysts as well as my thyroid was larger than it should be. They recommended a thyroid scan. This is done at the hospital and you take one of those dye pills so they could see what lights up. Again, it was a painless procedure, which also came back abnormal. By this time, being a natural worrywart, I had convinced myself I had cancer. They say thyroid cancer is ‘the best kind to get’; whatever that means. They recommended I get a biopsy to test for cancer.
I remember my sister taking me to my first biopsy. My mother, who is a full time nurse, told me the procedure would be no big deal and not very painful. SHE LIED but I’m so thankful she did. If you are reading this in concern about a friend or family member, I encourage you to lie as well! The procedure is quiet painful, expensive and overall sucks. The biopsies came back benign. The doctor said they would monitor the progress and see what happened.
Weight: My weight at this stage was just above healthy. A little chunky but not obese.
The next two years I went through the same tests (minus the scan) every six months. Blood, ultrasound, poke. Blood, ultrasound, poke. I also started seeing and endocrinologist to look deeper into my blood levels and make sure my thyroid problems weren’t effecting me in other ways.
Weight: I had gained between 30-50 pounds at this stage. I tried dieting with very little results.
Again……same tests. Every biopsy cost me $1000 on my crappy teacher’s insurance. The costs were racking up faster than I could pay them off. During these three years, I had test after test to ‘monitor’ what was going on. I continually asked about surgery. As a music and choir teacher, I was sincerely worried about losing my voice. I could not wait for my voice to be affected because that would be too late. I used my voice as my money maker 24/7! What if I woke up one day and couldn’t teach?
I also stopped getting my period. For three years I probably had less than five periods. I simply wasn’t ovulating. My general doc thought that they were not connected. The thyroid disease was separate and not related to me not getting my period so I was put on Metformin. Metformin is supposed to offset the complications of Poly Cystic Ovary Disease, which my doc diagnosed me with, based on my weight and the fact that I wasn’t getting my period. The meds made me get my period, once.
I met with a surgeon once in 2009. He explained what a thyroidectomy was and possible complications. A possible complication can be losing your voice for good. It’s rare but possible that your vocal nerves can be severed during surgery. I decided not to have the surgery until my docs said I had to.
Weight: During the end of these years, my weight peaked at my highest weight of 290 and stayed there. Again I had tried to diet but had very little results and would put the weight back on faster than I lost it.
I had now been dealing with all the tests and costs for 6 years and I was sick of it. I felt like no one knew or realized how hard it was to wait for test results and pay for said tests to often. The costs just kept adding up.
I started getting my period again after my general doc kept upping the dose on my Metformin. I would have a period every 2 months, sometimes. I now had 10+ cysts on my thyroid that were ‘not effecting it’s function’ and it was overgrown on my right side.
After my most recent biopsy, I was SICK of it. My husband sat with me through the procedure for the first time. He could not believe I had done it so many times after seeing what it was like. The procedure would give me nightmares the night before I had become so fearful of it. I was a 27 year old and did not want to keep dealing with this the rest of my life. The time had come that the risks of surgery outweighed everything else. I went to see a surgeon on my own account without a doctor’s referral. (allowed on my crappy insurance) He couldn’t believe what I had been through and for so long. I remember him saying “Of course no one would recommend surgery because that means you aren’t going to be their patient anymore and they want to make as much money as possible off you!” The surgeon made me feel super safe and was open and honest about his stats as far as thyroidectomies went. He had cut the vocal nerve of one patient and it was repairable. I decided to go for it and the surgery was scheduled for three weeks later.
I was so scared. I was so worried about my voice that I didn’t even prepare myself for the recovery of surgery. I remember laying on the surgical table and feeling like I was on ER or something. Other than oral surgery this was the first time I was going under the knife. I also remember the anesthesiologist did NOT count backwards.
The pain was not horrible when I woke up. I was unable to talk, swallow or lift my neck very much. They had made a 2-3 incision across my throat to remove my entire thyroid. Throughout the night the pain got worse and worse. Having not had surgery before, I didn’t know how much pain was normal. After crying to my husband at 3 in the morning, I asked for a different pain medicine and was fine afterwards. The next morning my surgeon came to see me. He told me he had inserted a drain under the skin that he’d have to remove before I left that afternoon. He was shocked by the size of my thyroid when he opened me up. The tests always showed it was enlarged but it was huge. The normal thyroid should be around 3-4 inches in length. Mine went from my jaw to collarbone and he was going to save it as an example for his patients.
Recovery felt slow because I’m an impatient person. I had to run a summer camp 3 weeks after surgery which I was able to do. The affects of the anesthesia wore off in a few days and I was just tired most of the time. My voice sounded like I’d smoked 10 packs a day for my whole life. When I came time for summer camp, I could talk normally but not yell or sing. I was terrified that my voice would never come back even though the surgeon assured me there were no complications.
My voice eventually came back as strong as it’s ever been. 28 days after surgery I got my period and have every 28 days like clockwork since. But the doc said they weren’t linked right? WRONG. Now it’s like the surgery never happened. I do have a scar across my throat but after weight loss no one even knows it’s there. The only difference in my day to day life is that I take a tiny purple pill everyday. Your body stores 6 weeks of thyroid enzymes at a time, so if the zombie apocalypse happens, I won’t make it, but I’m ok with that.
I wouldn’t say that the thyroidectomy made me lose weight. One year after surgery, I was mostly the same weight. However, the surgery did make it easier for me to lose weight when I started trying. Could I have gotten healthy with such an unhealthy thyroid? I guess I’ll never know. Moral of the story: I knew what was going on with me and what I needed more than the docs did. Doctors are often running a business with you as their client. Think about this, my thyroid was 3-4 times larger than it should be and I had 10+ cysts and yet nothing showed in my blood work. According to numbers, it was normal.
I encourage everyone that is starting a weight loss journey to have their thyroid checked thoroughly, especially if thyroid disease runs in your family.