Hi, I made the choice of surgery because I had spent 2 years being so close to remission, and then went back to my beginning symptoms while on a trial break off my methimazole. The year before being diagnosed and the 2 and half years of treatment were a complete rollercoaster for me. It interfered with home life and work with the mood swings, health issues, weight changes, difficulty concentrating/focusing on work, high stress, and missing work for so many doctor visits. I held out for a remission as long as I could emotionally and physically. I refused RAI adamantly because my eyes were so irritated with the grainy, sandy feeling already, and because I had an aunt and a grandmother with Graves that had been treated with RAI, and they developed the thickening of the eye muscles. I did my research. I read the medical journals online at length. I saw the studies linking the eye problems to RAI. Yes, it could happen anyway, but it was an increased risk with RAI, and with 2 relatives having had it, I refused to take that risk. I researched online to see what was involved in a thyroidectomy and what the success, complications, and scars were like. I am 54, almost 55, so I also knew that I couldn’t stay on methimazole a second time for very long, and if I developed another health problem requiring medical attention, I was putting my health at an even greater risk with my thyroid problem.
I wanted the surgery very much, and I was really excited that within a month of going back on the methimazole, my lab tests showed I could have the surgery. I was surprised at how much was involved with going to the surgeon, getting the paperwork and lab tests before and after, and recovering afterwards. It took me a month back on the methimazole, and then about 2 to 3 weeks before and after surgery to be where I would consider myself probably able to work. I teach, so being out for the summer worked out well for me. I didn’t have to take time off during my school year.
My worst time was recovery, when they woke me up after surgery. I felt awful. I couldn’t even look at broth, so I ate nothing. I was kept overnight in the hospital for observation and until my post-surgery lab tests showed I could go home. I would say I slept through most of my time there after surgery, but the lights and the noise from the nurse’s station right outside my door kept me awake most of the time. However, they were there for me anytime I called them. It was crazy being hooked up to fluids and monitors on both arms with sticky monitor pads attached all over me, making it hard to turn over or get up for the bathroom, and there were no mirrors to see what the awful bandage on my neck really looked like compared to how it felt. Time seems to take forever, and the pain relievers they gave me after surgery by injection made me sick. I’ll be honest and say I couldn’t keep it in my system until they switched to something else in pill form. My surgery was between 11 a.m. and 3:00 p.m. when they woke me up that Tuesday. I would say that 24 hrs. later, I was worried they would send me home before I was ready. Another period of sleep, though, and by 2 p.m. Wednesday, I felt ready to be dismissed. I didn’t actually get discharged until another 2 hours while they waited for my last calcium/magnesium lab tests, but I went home by 4:00 the day after the surgery. That morning my surgeon had removed an outer bandage and was telling me I could have ice cream at home, but my throat hurt so much I wanted to just cry. It’s amazing what a difference the extra hours of sleep and different pain reliever made!)
Once home, I rested, ate a little soup or had small portions of food for a day or two. I was happy to get to clean up, with instructions to not let a shower spray on the area directly. I was glad to see my bandage was now only 4 little white see through strips of tape and the appearance of a thin surgical incision along the neckline base. I took my pain pills for only 2 to 2 and a half days, and mostly at bedtime. I switched to ibuprofen because it works well for me and it works on inflammation. My voice range was mid to low for me and very soft, but now about 14 days later it is improving. Still no high notes (lol). Three days after surgery I had to go for a calcium/magnesium test, so I had an excuse to drive and go out. I was so excited, and I felt great. I over estimated my energy, though, and felt nauseated with an awful headache by noon that day, so I rested again when I came home. Seven days after my surgery, I was having my tape removed and having my medication adjusted a little (and then again a few days later). My scar was not too bad, though not quite as neat as some I had seen online. I felt some of that had to do with my age. I developed some looser skin in the neck area in the past year. Oh well! My scar, horizontal, had a fold in it, which I wasn’t really happy with. I hoped it would be temporary, but I didn’t worry about trying to cover it up. I did try to stay out of the sun with it, though. I was told not to put anything on it, but on my visit to my doctor this week, I was told I could try a scar cream and I could use sun block when I wanted to. I picked one called Scar Zone because the ingredients matched other products I had read about online, but the price was much less ($9 to $11 compared to $15 to $25).
Today was the 14th day since my surgery. My voice is pretty normal range, no gravel sound. I have most of my energy back. I forgot to take ibuprofen during the day and was very surprised this evening when the area on my neck really started to ache, but taking the Advil again helped quickly enough. My skin feels tight today, so I guess it must be drawing up, which is good. That means the funny fold line will be clearing up. I had a little extra skin there after surgery, and I was worried it would stay that way. The scar line is thin, blending in, but is still a little raised with a bump or small swelling at both ends, more on one end. I’m optimistic that will fade away, too. It may take weeks, or months, but I can deal with it. I don’t plan to hide it. I am getting used to a new schedule with meds and supplements. I’m on generic synthroid (levythyroxin .75, I believe), and it took me 2 days before I realized I was supposed to take it an hour before eating anything or having anything (5 a.m. for me) other than water. (Maybe that’s why I was so nauseated and had a headache those first few days home.) I am also taking my blood pressure medicine as before, and I take a generic form of Mag-Ox 400 (magnesium oxide) and lots of calcium for now. I take 2000 mg. every 8 hrs (2 Caltrate D 600 chewable tablets and 2 Tums 1000–because those Tums are not 1000 of calcium–they’re only 400 of actual calcium). I now have a schedule of 6 a.m., 2 p.m., and 10 p.m. , adjusted if needed for my daily routine. (And oops! I had to run and take that calcium while typing this! I was late!) I go back for another calcium/magnesium blood test (and whatever else they are checking) the end of August and then go back to my endocrinologist the first week in September. I have heard that calcium can take about 2 months to adjust in some people. I am not concerned about any problems with it. I had a surgeon with 25 years of experience on thyroids. Even if I do have to continue taking extra calcium, it does not bother me.
How am I feeling now? I feel really free! I haven’t felt this way since my first year of treatment with methimazole when I was told I had a good chance of going into remission. That was exciting, but it was a maybe. I am now free of my thyroid. I felt very strongly in the beginning that I would not do RAI or surgery when it wasn’t the thyroid that was the problem. It was Graves. Now 3 years later, I have grown tired from trying to fight this, and at my age, I am concerned about getting as many days/years as I can out of life! I feel young, I still look fairly younger than I am, and I want to be around a lot longer! I still work and have at least another ten years before considering retirement, so I need to be able to keep up with it mentally and physically. I need to be able to deal with the stress that work and life in general brings without worrying about what my thyroid will do to my heart or what methimazole will do to my liver. I feel very optimistic about how the rest of this year is going to be for me. My eyes have been so much better since my surgery. I don’t have the grainy, sandy feeling other than just tired eyes from being on the computer or from allergies. I am wearing eye makeup again, which I barely wore more than a few times in the past three years. My hair is okay. There is no big change from before yet, but hair takes time to recover from stress and illness, I’m told. I’m content. My nails are growing again. I am not having the racing pulse or pain from it in my arms like I did off and on for the past three years. I gained about 2 lbs. the first week after surgery, but it has gone up and down that way, so I think I will be okay if I watch what I eat. I would not be very happy about gaining another 10 lbs, but I’m just watching it. I have clothes in 2 sizes from the past 3 years anyway!
I know there are many people who do choose RAI, and there are probably many who do well with it. I was more afraid of it than surgery. For me this was the best choice. I asked for it, and my primary doctor really thought I should go with RAI. My endo. and the surgeon, however, were very supportive of my choice and very encouraging. I was ready because I felt I had some choice in the decision and I felt I had done my homework on all the pros and cons of it. I knew what to expect before, during, and after. That made a difference for me.
I know this reply is very, very long, but I wanted to share with you as much as I could think of! Much of what I had read about the surgery had been from people who had thyroid cancer. I didn’t have that, but the surgery was the same, so their experiences were very helpful to me. I also discovered that there were many, many people I worked with who were on synthroid or other similar treatments either for low thyroid or because they had also had a thyroidectomy. They seemed to be very comfortable taking their meds and lived pretty normal lives. The other side seemed to be less risky, even when they needed meds adjusted. I was in and out of the doctor’s office all the time. Three years had felt like 10. (I suspect it was going on at least 2 or more years before I was tested.)
I feel really great about what I chose, and I feel that I’m going to be healthier. I’m not bothered with having to take meds for the opposite of being hyperthyroid. I’m not bothered by my scar. Check your options, and discuss your concerns with your doctor. My endocrinologist is someone I can talk to, and I feel very lucky about that. With my primary doctor, I’ve probably been a little headstrong. I’ve tried to make sure that all my test results and any other information is sent to him so that he is included. I haven’t been to him as often since I was sent to a specialist with this, so my primary doctor was kind of left out of the picture these past three years. He is the one I will be seeing more now, and I won’t even be seeing him that much. My doctor visits will be much less frequent now, but I want to be sure he is well-informed with what I’ve gone through. So check out some info online, and give yourself time to feel like you know what you are in for, whichever treatment you go with. I think that is important. It’s scary when others are making those big life changing decisions for you without your input.
I hope this helps! I’ll try to come back here when a little more time has gone by, or if anything changes for me either way. I’ve found that even when someone else goes through the same procedures, it can still be unique for each person. I wish you the best! (I apologize for any errors in my typing! It’s really late here!)
