January 2, 2014
This post is for those who are interested in learning about thyroid disease and surgery. This is about my experience with hypothyroidism, Hashimoto’s, thyroid nodules, and thyroid surgery. I found it helpful to read about the experiences of others who had gone through thyroid surgery prior to my surgery and I wanted to add more literature to that collection for anyone who may be looking to do the same. The information portrayed here was gathered from multiple sources online (academic and non-academic), my doctors, and my personal experience.
- Early-November 2012 – After having migraines 2-3 times per week for several months, I made an appointment to see my primary care physician (PCP). My PCP order a MRI of my cervical spine and brain.
- Mid-November 2012 – The MRI results revealed the muscle at the top of my spine had a spasm treatable with muscle relaxers and lots of physical therapy. Much better news than something that would have required surgery to fix. It also by happenstance revealed a 4 cm lump in my thyroid. Because the MRI did not image my entire thyroid clearly, my PCP ordered I return the next day to get a sonogram (aka. ultrasound) on my thyroid (ultrasounds are the standard visual tool used on thyroids). I was diagnosed with a 4.1 cm nodule in the left lobe of my thyroid; my right lobe was clear. When the ultrasound tech game me this news, I looked at her puzzled and she replied with “You haven’t noticed it?”. I had not noticed it. I didn’t even know where my thyroid was or what it did. She explained the location to me and pointed out the nodule; from that moment until my surgery every time I took a sip I felt it the ball pushing on my throat.
- Early-December 2012 – Me being me, I asked my PCP to order thyroid blood work so that when I met with my endocrinologist for the first time I would have the Thyroxine (T4) and Thyroid-Stimulating Hormone (TSH) numbers ready to go, even though I had very little understanding at this point. I had gotten a full hormone workup as part of an exam in February 2012 and my TSH level was at 2.4, so I didn’t anticipate anything too abnormal. My PCP pushed the buttons necessary and got me into the endocrinologist weeks earlier than they were initially willing to see me. My endocrinologist told me that I had subclinical hypothyroidism (my TSH was 8.9!), that he suspected the failed thyroid was due to Hashimoto’s Autoimmune Disease, and that my nodule contained a single cysts and calcifications and there was active blood flow through the nodule. The combination of the single cyst, calcifications, and blood flow increased the possibility that the nodule was malignant. I was put on Synthroid 50mg, a thyroid hormone replacement prescription, and was scheduled to come back in two-weeks for a ultrasound guided fine needle aspiration (UGFNA) biopsy.
- Mid-December 2012 – The UGFNA biopsy was not as bad as I had imagined it. Essentially, you lean your neck back and they tap needles up and down in your nodule. They first move through your nodule to find the cyst and then they shimmy the needle up and down in order to move tissue into the needle. Some doctors offer Valium or a local anesthetic prior to the [minor] operation, I did not use anything and it was very doable. My neck was very sore for about a day, but after that it was fine. If I needed to have another, I would do it the same way. Usually, endocrinologist wait six weeks after a patient is placed on thyroid hormone to do biopsies because the high levels of TSH can cause the tests to read as inconclusive. There are three results that can derive from an UGFNA: benign (non-cancerous), malignant (cancer), or inconclusive (unknown malignancy). Four samples were taken. Two samples were to be tested for malignancy. Two were to be utilized for genetic testing pending an inconclusive test on the malignancy of the first two samples. Genetic testing can be done to determine whether one has the genetic tendency for thyroid cancer and it can give a clearer idea of what the inconclusive result may mean. Given the size and characteristics of the nodule, statistically it was more likely that I had cancer than not – commence one terrifying week.
- Late-December 2012 – BENIGN! with confirmed Hashimoto’s. Hashimoto’s simply means that my white blood cells think my (normal) thyroid cells are malignant and are attacking my thyroid. This significantly diminishes my thyroid’s function by causing permanent damage. Luckily, Synthroid is identical to natural human TSH and can preform all functions necessary. Now that the malignancy was not a question, there were two actions to still take: get my TSH numbers down to an age appropriate level using Synthroid and decide whether surgery was a route I wanted to take. The target range for TSH is 0.3 – 3.0 according to the American Association of Clinical Endocrinologists. Most women who have hypothyroidism find out when they are pregnant because women need about three times the normal thyroid hormone levels when they are pregnant. Having low thyroid hormones can be very dangerous to an expecting mother and her baby. (it is standard to check TSH levels during the first trimester) Prime baby-making (i.e. age appropriate) TSH levels are around 1.0; this is what I began working towards with my doctors. Secondly was the surgery issue. My endocrinologist did not feel as though it was medically necessary and I did not want the two-inch scar across my neck so I opted not have the surgery as the nodule was not a bother to me when I was not thinking about it. My endocrinologist left it at getting an ultrasound every six months to make sure nothing changed.
- June 2013 – My endocrinologist performed the six-month ultrasound and while the overall size had not changed my cyst had grown and he suggested I come back in 3 months for another ultrasound. (Normally nodules are checked annually.)
- August 2013 – When I came in for my next ultrasound, there was a surprise waiting for me: a new endocrinologist. As someone who doesn’t love doctors in the first place, getting a new doctor is a very uncomfortable experience. It takes a while to build trust with anyone who is given the responsibility to manage your health. Even more discomforting was that this new endocrinologist came with a new diagnosis. This endocrinologist suggested that the reason my previous doctor had been taking ultrasounds so frequently is because he suspected the nodule was malignant and that the biopsy had been a false-negative. He mentioned the calcifications and blood flow and strongly advised surgery. This news was like a brick wall. I had gotten over the surgery issue and now that the idea of cancer was floated back into my mind, it was terrifying again. My PCP suggested that I could get a third opinion if it would clear my mind, but having gone through this in December and now again in August I was tired of the game. The other risk of keeping the nodule would be the chance of it growing while if I got pregnant. My previous endocrinologist and new endocrinologist confirmed that there was a more than good chance it would grow during pregnancy. If the nodule gets too big it could impact my breathing by placing too much pressure on my esophagus and require surgery. I did not want to even consider risking surgery while pregnant, so I started doing more research on surgery.
Risks of Surgery
- It is important to understand the options you are given with respect to thyroid surgery and the risks. The thyroid is a butterfly shaped organ at the base of your neck with one lobe on each side. TSH controls your metabolism. There is a lot of good information on google regarding hypothyroidism and Hashimoto’s.
- Parathyroids: You have four of these, two on each side of your thyroid. They control your vitamin D levels. In order to maintain proper vitamin D levels you only need 1/2 of one of these little organs, so there is very little danger that they would all be damaged during surgery to a point where you would need vitamin D supplements. However, this is a possibility and if this were to happen you would suffer symptoms of low vitamin D levels permanently. Make sure to ask your surgeon what he does to preserve them during surgery. He should treat each one like it’s your only one.
- Laryngeal Nerve: You have two of these nerves, one behind each lobe of your thyroid. These nerves are connected to your voice box. During surgery, your surgeon must move these out of the way to ensure they are not damaged. If one is damaged then your voice will be permanently hoarse. If both are damaged then you would have trouble breathing and a tracheotomy may be required. This is obviously very serious, but it is also unlikely that one much less both would be damaged, but this is dependent on the skill of your surgeon and the extent of your nodule and inflammation. There are now monitors that can be utilized to protect the nerve during surgery and there have been studies that have shown a decrease in incidents of nerve damage. The use of these monitors should be discussed with your surgeon to ensure the best technology is being utilized.
- Anesthesia: The standard risks associated with anesthesia are present during this surgery. A breathing tube will also be utilized so anticipate a sore throat after the surgery. There is not any getting around this one.
- Hematoma: There is also a small risk of a hematoma occurring at the site of the surgery. There is an added risk with this being a neck surgery and the hematoma possibly occurring at the base of the neck against the breathing tube and causing a blockage of the airway. A hematoma may occur if the surgeon did not properly close the site and stop bleeding. Again discuss this with your surgeon and find out their history.
- Infection: This can be an issue whenever open wounds are created. Whether it be the scratches in your throat from the breathing tube, the incision site, or what not. Make sure to follow your surgeons instructions with respect to care for the incision site.
- Thyroidectomy versus Lobectomy: Depending on the diagnosis, one may be more appropriate than the other. If my diagnosis had be malignant from the start then I would not have had a choice but to do a thyroidectomy (as suggested by all of my physicians and surgeons). However, my diagnosis was benign so surgery itself was optional. The odds of my nodule being malignant (a false-negative biopsy) was 2% and if the nodule was malignant there was only a 40% chance that there would be a malignancy in the second lobe. My main two reasons for having surgery were that at 26 years old even a 2% chance of cancer was too high and that I did not want to risk having to have surgery while pregnant.
- Pros: Since I am on Synthroid, my thyroid essentially has no purpose and by taking the whole thing out I have no risk of developing cancer in either lobe. Since I would have no thyroid no annual ultrasounds on the remaining lobe (after lobectomy). If the lobectomy reveals cancer, I would need to have the other half out requiring a second surgery with all of the risks associated with the first and some higher due to the nature of the surgery. There is no risk that later in life I will develop a nodule in the second lobe that may require another surgery at that point.
- Cons: If the surgeon is only going into one side of my neck there is no risk for parathyroid damage that would affect me. There is zero risk of my surgery ending in a tracheotomy.
- Cons match the pros for the thyroidectomy vice versa with the pros and cons for the thyroidectomy.
- Depending on your diagnosis, you can choose to just monitor your nodule for any changes. I chose not to do this because of the risk of growth with pregnancy and the large size of the nodule.
- Entry point for surgery: This is an option that a lot of people do not know they have and it is because it is still new and the locations are limited. There are two ways currently to remove the thyroid: traditional open-neck method and semi-robotic “facelift” method To my knowledge, there are two hospitals in the U.S. (Johns Hopkins and Medical College of Georgia) who regularly preform thyroid surgery using a semi-robotic “facelift” method. It is gaining popularity and I am sure there are other locations utilizing this method, but do your research and make sure that any surgeon who offers this to you has been properly trained. The semi-robotic surgery at Johns Hopkins is preformed by two surgeons: a thyroid surgeon who monitors all of the functionality and makes sure the right cuts are being made and typically a head and neck surgeon who operates the robot. This surgery is considered “scarless” because the incisions are made either at the hairline or behind the ear in the same method as a facelift. The traditional open-neck method involves a two-inch incision usually about 1-inch from the base of the neck. I sought out Dr. Jason Prescott at Johns Hopkins due to his involvement in the semi-robotic surgery. If you’re going to have surgery and you can avoid a big neck scar, why not?
- Incision closure: This is dependent on your hospital and surgeons capabilities. The options are staples, stitches, or glue. My surgeon has preformed over 1000 thyroid surgeries and used all options for incision closure and has routinely found that the plastic surgery glue provides the cleanest scar. After all, that is the lasting mark of a good surgeon – the barely visible hairline scar.
- Best piece of advice [for surgery] – Research your surgeon, make sure you feel comfortable with them, and if they don’t tell you all of the risks look elsewhere.
- Dr. Jason Prescott is one of those people who must have been born to be a doctor. His demeanor is very professional, yet incredibly comforting at the same time. While he is a busy surgeon, and as with any doctor there is not much face-time before the big day, his office was always open to my calls and he gave me his personal cell phone number. Everyone I encountered in his office and at the hospital was kind and gentle. I could not have asked for a better team. When I initially met Dr. Prescott and told him I was interested in the semi-robotic surgery, he was more than willing to discuss it with me, but due to my Hashimoto’s and unknown inflammation around my thyroid waited to tell me if it was an option until he consulted some colleagues. After my first visit with Dr. Prescott, he called within a few days to discuss my options. He had consulted his co-surgeon and several surgeons who are performing this surgery in Georgia and elsewhere and they agreed with him that the risk of complications due to the Hashimoto’s was increased by going the “facelift” approach, so traditional open-neck it was for me. I had previously met with other surgeons to discuss thyroid surgery and felt uncomfortable and unsure every time I left their offices. Dr. Prescott took his time and ensured that I was not only comfortable, but fully educated and dedicated to each decision I made regarding my surgery.
- In mid-November 2013, I had an open-neck left thyroid lobectomy at Johns Hopkins Hospital (living in Baltimore, I might as well have the best the Country has to offer). I had traditional anesthesia with intubation and the incision was closed with plastic surgery glue. A lobectomy surgery typically lasts 1.5 hours, mine went for 3.5 hours and typically it takes 1 hours to come out of anesthesia and I took 2 hours. My husband was a little frazzled, but I did get to go home that night.
- Within a few days I was walking and back to normal sleeping patterns. The soreness (agitated by my neck muscle spasm) in my shoulders, neck, and upper back lingered and my neck’s range-of-motion was very limited for about two weeks. Overall, my recovery was fabulous and very speedy. The glue was taken off 9 days after surgery and replaced with some Steri-Strips to make sure the incision was held tight reducing potential scaring. I documented with photos the scar healing so review at your own risk (they aren’t that bad).
- I got the results from the pathologist 5 days after surgery confirming that the nodule was 4.1 cm and completely benign! This meant no iodine, no second surgery, just monitor my thyroid hormone levels.
- One thing I wasn’t prepared for was the pain at the incision site. The doctors say that the site shouldn’t be painful, but apparently if you are young the nerves start to regenerate quickly which can cause a searing pain at the incision site. I also got “pins and needles” feelings in my neck at the nerves were growing back. Something heat at the incision site can indicate infection, so to make sure I did call my doctor to make sure everything was alright and they assured me it was normal. They suggested I begin desensitizing the scar, aka. rub it, which hurts like crazy, but it’s actually been working and making the burning less intense.
- Six weeks later, I feel great and have regained all the motion I had before, granted that wasn’t much, but if it wasn’t for that muscle spasm in my neck who knows when I would have discovered the 4 cm ball in my neck and that my exhaustion was from my thyroid crapping out on me. I am doing physical therapy at home based on my work with the PT before surgery. My scar is small and I use Clinique Moisture Surge with aloe on it in the mornings and Burts Bees Mama Bee Vitamin E oil on it at night. Keeping the scar protected from the sun is crucial in the first year to ensure that the scar does not discolor. I use Aveeno Face Sunscreen on it when outside. It does irritate the scar sometimes and can burn, but it’s winter and I am wearing lots of scarves, turtle necks, etc. to keep it out of the sun. If the scar is still sensitive in the summer, I’ll probably look into a gentler sunscreen formula.
- Now that I am officially missing half of my thyroid, I needed to get my thyroid hormone levels tested again to ensure I am not going hypothyroidic again. You should wait 6 – 8 weeks after the surgery to ensure that you’ve reached an equilibrium and that the half-life of the TSH from your removed thyroid/lobe has passed. I’ve gotten my TSH numbers tested and I am at 1.07 which is fabulous; my goal was 1.0, so perfect. I am still on 88 mcg Synthroid. I’ve asked several people my age with thyroids removed about their Synthroid dosage and it can apparently vary greatly. I met a girl my age/size who was on 200 mcg 5 days a week and 400 mcg the other 2 days which to me seems insane, but it’s all about your body, so when comparing numbers and judging where you should be at and how often you should test your numbers think about your own personal metabolism and work it out with your physician.
- On a side note, before I had surgery I read about the scars and how people felt about them, whether they were self-conscious or proud. Most people spoke about how proud they were to sport these “battle wounds”. To most people (disclaimer: most of the bloggers I read from were women who have had the surgery) the scars represented surviving cancer or at least surviving a cancer scare and moving past that. Before surgery, I thought I would be self-conscious about the scar and I didn’t think that I would see it as a “battle wound” because I probably didn’t have cancer. The fact is I had a completely benign biopsy, but given the size of the nodule there was no way to ensure that I was cancer free. At the age of 26, a 2% chance I had cancer was too great to live with and I decided to take that 2% to 0%. The thought of having cancer or even an organ removed at my age was terrifying and something that I now see as a life hurtle. I do wear my scar proudly. I don’t show it off by any means, but it’s a kind of like a secret hand shake among those of us who’ve gone through the experience. I notice them on anyone whose had the surgery no matter how fresh or how small their hairline scar may be. At a New Year’s Eve party I went to I was actually approached by 2 women my age who had their thyroids removed as well. It was comforting to share our experiences and know that we weren’t alone as well as compare how well the scars have healed – apparently mine looks incredible for 6 weeks out, Yay! It was also shocking that out of 25 people at this party, 3 women under 30 had partial or no thyroids. It is so common and so unknown. I wonder if this will continue to be the case or if the medical field will start including thyroid blood work with young women’s annual physical if there is family history of thyroid issues. I know my sisters will be including it in their tests for now on. Knowledge is power.
Thank you for reading about my experience. I hope that it has helped you in your search for information on the subject. Good luck to you and feel free to leave a comment on the page if you’ve got any further questions.