I am posting this over a year after my surgery, but I originally wrote up my thoughts pretty soon after the surgery and started the blog post in March 2019, which I’m guessing was a bit after part 6. Why has it taken so long to finish this story? I’m still dealing with hypo issues on a daily basis, and two surgeries in a short time period probably had an effect on me that has taken some time to come to terms with.

I wish my story was as easy as “and then we removed the rest of my thyroid and everything was ok after that”, but for me (and for many people who have had total thyroidectomies), the surgery is just the first step on what so far has been a bumpy road of getting to the right level of thyroid hormone to return to feeling somewhat like myself again. More on that in Part 8, which hopefully won’t take a year to get to.

Previously:

I was diagnosed with papillary thyroid cancer after a thyroid lobectomy in June of 2018.  I also discovered I had Hashimoto’s, which has caused lots of subclinical hypothyroidism symptoms for years (or decades?), but because my thyroid stimulating hormone (TSH) was within “normal” range at 3.4 (range 0.45-4.5), I would not be treated until I went out of range.

Prelude to the second surgery – July and August, 2018

My hemithyroidectomy surgery which removed the right lobe took place on June 21.  I then found out I had thyroid cancer on or around July 4th, and needed to get the left lobe and isthmus removed in case those too contained cancerous nodules, so I scheduled my 2^nd surgery for August 23^rd, and then went on a weeklong vacation to Hawaii on July 7^th, 2 weeks and 2 days after the surgery.  This had been discussed ahead of time with my surgeon and we didn’t see any reason why it should be a problem.  I kept the incision covered the whole time.  The only moderately athletic thing I did on the trip was take a 8 mile hike on a slightly treacherous trail, but I was running half marathons weekly before the first surgery, so this wasn’t too bad (except getting winded on steep uphill climbs).  I actually didn’t worry too much about the upcoming surgery or cancer diagnosis on this trip because the cancer was out with the first surgery, and there was no sign it had spread anywhere, the second surgery was just something I needed to do.

My second post-op appointment got moved back from 4 weeks to about 6 weeks after the first surgery to be combined with pre-op appointment for the second surgery, but I still needed to do the blood test for thyroid hormone levels around 4 weeks.  I didn’t hear from the doctor for a long time, so I assumed all was well…

I received a phone call from my surgeon (once again while shopping), calling to let me know that she was going to start me on a low dose of 25 mcg levothyroxine (synthetic T4 hormone) because my TSH was high, and then after the next surgery that would be increased since I would no longer be making any of my own thyroid hormone. 

July 18, 2018 Blood Test:

TSH 7.790 (0.4-4.00) out of range

FreeT4 1.08 (0.8-1.80 ng/dL) in range (but this is less than 50% of its range, many people would have hypo symptoms with freeT4 this low).

New Hypothyroidism Symptoms

My ENT surgeon also asked if I was having any new symptoms, and I was.  I had seemed more fatigued than normal, especially in the afternoon, and I had noticed on my runs I was getting more and more sluggish.  My abnormal monthly cycling problems had gotten worse, and my hair had started to fall out at a higher rate.  A lot of those I had before, but the hair was a new symptom and I at first thought maybe it was a reaction to the surgery, but now I’m writing this 6 months later and it is still falling out at a high rate.  (Update: I am now updating this 14 months after that first surgery, and my hair is still falling out at a higher rate – I have tons of hair and am not worried about baldness, but it is so annoying to deal with increased amount of hair loss in the shower, after showering, while brushing, putting lotion on, vacuuming – hair everywhere all the time.  I wear it in a braid now 90% of the time which keeps it at bay).   My resting heart rate had plummeted, and some days it was in the low 50s.  (If you have seen any weekly running logs, this is why I report resting heart rate.  It is still in the low 50s frequently – that’s not from running, that’s from hypothyroidism).  Rounding out my symptoms list is severe afternoon fatigue, brain fog, and inability to stay focused on tasks. 

Anyway, my remaining half a thyroid was clearly not working that well, and I think the chronic Hashimoto’s had taken its toll on it, and I wasn’t surprised, I just didn’t want to go in to the next surgery that hypo because healing from surgery takes a lot of energy and works best when you’re healthy.

August 6, 2018 – Post-op appointment #2 / Pre-op for thyroidectomy completion surgery.

Compared to the giant list of questions I had going in to the first surgery, I had only 2 questions for this follow up surgery. 

1.)  Where was the incision going to go (answer: using the same incision as before)

and 2.)  Was the isthmus going to be removed? (answer: it is attached to the remaining lobe, so yes).

The good news was:  Since I had already had a tube stuck down my nose in Post-op appt. #1, I didn’t need that done again!

The bad news was: Because the whole thyroid would be gone, there is a much higher risk of parathyroid damage, and in order to leave the hospital the same day, my calcium levels would need to be stabilized. 

I knew my thyroid was not normal (chronic Hashimoto’s with multinodular goiter has caused it to be inflamed and that’s why it was so hard for the pathologists to diagnose me after the first surgery), and my whole neck region had felt inflamed after the first surgery.  I know people with multinodular goiter have a very high risk of parathyroid damage or destruction, so even though I had two parathyroid glands on the right side that survived the first surgery, I was kind of expecting the swelling to cause problems.

August 23, 2018 – Thyroid Surgery #2 (Thyroid completion surgery)

Pretty much exactly the same as the first surgery except:

I knew I would need to do a pregnancy test before hand so I was prepared for the pee test. (Hard to do when you are not allowed liquids after midnight).

And, I brought an overnight bag and left it in the car because I also was prepared to spend the night. I did not want to, but I knew this was a strong possibility.

We spent a lot less time waiting and the surgeon was running on time.

I also met with the anesthesiologist, who this time seemed like a young doctor and he a.) didn’t seem to have much of a bedside manner, which is fine and b.) I had to ask him about anti-nausea meds, because I had it last time and he didn’t seem too concerned.  Anyway, he prescribed an anti-nausea patch that went behind the ear that I had to be careful not to get on my skin touching (spoiler alert, I accidentally touched it and got it all over my hand the next day).  I was not too impressed at this point, but then 15 minutes later, I met with the nurse anesthesiologist who would actually be administering the anesthesia, and he was much more friendly, listened to me explain that I run a lot and that my heart rate gets very low, and would probably be very low during the surgery, and he said he understands because he’s an endurance biker himself.  We also discussed the red hair issue and how I woke up and was pretty alert after the first surgery, so we’d see what I can remember from this one.

I got wheeled in to surgery and kind of remember more of what happened in the operating room, until the point of the anesthesia going in to the IV.  My surgeon was there, and everyone was professional and seemed energetic and positive.

I remember waking up in the recovery room with the nurse anesthesiologist and my surgeon  right there, so I’m assuming they pulled out the intubation tube and woke me up in the operating room, but I don’t remember that part.  As soon as I woke up in the recovery room, I was alert from then on! This is apparently “not normal”, as I was the only one who seemed conscious and alert and trying to talk to people. Anyway, I was happy to be awake and alive, so being alert was a good thing.

In the recovery room

I spent a whole lot of time there, because I had to wait for the calcium blood test, which involved someone from the blood labs coming to take my blood, and a whole lot of waiting (at least 2 hours).  During that time, I saw a whole lot of people in there, most in a whole lot of pain.  I don’t actually remember how much pain I was in, except that it was a lot less than the first surgery, so pain level of 3 at the most. 

The WORST part was that the nurses kept talking about a variety of things (there were about 8 beds, 4 nurses total), talking about how they have foot/leg pain and maybe they need to get shoes more often (one nurse said she was replacing her shoes every 6 months, but walking 20,000 steps a day – I wanted to tell her that most shoes wear out after 600 miles and that’s about 10 miles a day so whatever cushioning there is was long gone), another nurse was talking about how people keep breaking in to her garage and stealing her lawn mower and leaf blower – I wanted so much to tell her about SimpliSafe where you can install a camera, doesn’t require a contract, and is affordable and could help, but I wasn’t supposed to talk because of the tube down the throat had made my throat sore.  (I didn’t try to talk, but I really wanted to, and that is a real struggle for me).  Finally towards the end, the nurse watching me was talking about how she has seasonal allergies all year round, and I told her I did too and found out I had Hashimoto’s, which has probably makes my allergies a lot worse, and that she should get the antibody test. I’m not sure if my alertness was a curiosity or an annoyance, but I was doing pretty well.

Anyway, the nurse anesthisologist came in to check on me and asked me if I remember when I woke up, I’m thinking my red hair probably keeps me in a less deep unconsciousness as others, because I saw a lot of people come in and be roused several times and ask over and over again where they were (that never happened to me, either time). 

Unsurprisingly, I found out my calcium levels were too low and I had to stay the night at the hospital, so we could test them again in the morning.  I later found out that I could have gone home and come back for the test, but my mom thought they should just keep me overnight.  I would have preferred to just come back, because being in the hospital when you’re completely alert and not really in pain and don’t need to be hooked up to an IV is not fun.

I got wheeled up to a private room (I’m assuming all the rooms are private at my hospital, because my insurance wouldn’t cover that otherwise), and my temperature, blood pressure, and pulse were checked every 30 minutes for hours and hours, but eventually they let me try to sleep.

I really hated spending the night in the hospital because I a.) felt so much better than after the first surgery and didn’t think I needed to be there and b.)  didn’t sleep well at all.

I woke up around 4:30am when they came in for my blood pressure and temp check (they hadn’t done them during the night, thankfully).  I was cold, still wearing the operating gown, and my pulse and blood pressure were ridiculously low (pulse was in the low 40s).  Well, the nursing assistant ran to get the nurse who came in with water and popsicles to see if that would perk me up.  (I think my pulse just gets really low when I sleep, so I wasn’t surprised).

I was ready to go home as soon as my calcium tests came back (still low, which just meant I had to take a calcium supplement 4 times a day until it got back to a normal level).  My surgeon checked in on me and told me about the calcium around 7:30-8am, and I was ready to go home, but apparently it takes “hours” to fill out the paperwork to release someone from a hospital.  I told the nurse I was ready to go whenever, because there was really no reason for me to be there after the blood test, and I was released around 10:30-11am. 

I went out to lunch on the way home from hospital and had no problems eating, I just felt naked without my GPS watch on.

Recovery after second surgery

Hallelujah, my neck felt SO. MUCH. BETTER. After the second surgery.  I’m pretty sure my swollen and inflamed thyroid was pissing off my whole neck region because I instantly felt a lot better with it out of there.  There was much less swelling and pain this time.  I took the prescription pain meds for about 4.5 days after the surgery, but was worried I might become addicted so stopped a day earlier than I had after the last surgery.

The only real additional pain and annoyance was my skin had become sensitive to the adhesive on the steristrips which are used to help keep the incision closed and covered.  After I started taking showers, the skin right below the steristrip started to be red and irritated, but nothing all too serious.

I also started taking 125 mcg levothyroxine the day after the surgery.  Based on my weight, and an 80% absorption, this probably should have been enough, but it wasn’t, and from the surgery onwards my thyroid hormone levels were dropping and TSH was increasing, but I was already hypo, so I didn’t notice an extreme increase in symptoms until later.

August 31, 2018 – Post-op follow up Appt. # 1

Ugh, the last dreaded camera down the nose to look at my larynx appt. I don’t remember much else from the appointment. Healing was going well.

I also received the pathology report (I’ll post down below) for the removed left lobe and isthmus (and many, many swollen lymph nodes). No new cancer detected, which is great news!

In between appointments:

I technically was supposed to wait two weeks to start running again, but this time I was a bit more antsy, so I did some very light run/walk intervals about 12-13 days post surgery.

I also got very sick with either food poisoning or stomach flu at about 16 days post surgery, so had to take a few extra days off before getting back to the full swing of running.

September 21, 2018 – Post-op follow up appt. #2

Healing continues to go well, but this is probably my most hypo point according to blood tests.

Appointment scheduled for endocrinologist, and while I had assumed there would be no radioactive iodine treatment since there is no evidence of cancer leaving my thyroid, by ENT mentioned it was a strong possibility since three nodules were cancerous. (More on that in Part 8, but luckily I have not needed RAI treatment).

Parathyroid hormone (PTH) levels had stabilized, which meant I could stop taking the oral calcium, which is good news too.

September 18, 2018 – Blood test

TSH: 16.43 H (0.4 – 4.00) out of range

T4 free 1.20 (0.8-1.80 ng/dL) in range

Levothyroxine dosage increase:

previously: 125 mcg/daily, new: 137.5 mcg/daily (started on Sept 22, 2018)

Pathology of 2^nd surgery:

Pathology report summary and hot take:

1.) No cancer detected in either the left thyroid and isthmus tissue or the 11(!!!) swollen lymph nodes that were removed, which is great news.

2.) 3 lymph nodes were stuck to the thyroid itself, and 8 lymph nodes were removed in a giant clump. I do not know why, but even a year later the lymph nodes stuck to the thyroid still makes me laugh. (I know this is a serious topic, but there was so much inflammation in my neck and swollen lymph nodes, and I think it is ok to laugh at my own screwed up thyroid)

I don’t believe this amount of inflammation in the thyroid or the swollen lymph nodes is normal, nor would I expect all that many thyroid patients to have such a high degree of inflammation. I had long term untreated Hashimoto’s, and a multinodular goiter with 8-12 1cm or larger nodules on each thyroid lobe growing in to each other. I don’t know if the inflammation got worse after the first surgery, but I do know the pressure and swollen feeling in my neck was immediately gone after the second surgery.

Honestly, I would have loved to have avoided any surgery, but by the time I was diagnosed, my thyroid was not healthy. It is sometimes hard to not be mad at myself for not figuring out I had a thyroid problem earlier, but at this point I’m trying to be kind to myself and what’s done is done.

Up next: Part 8: First endocrinologist appointment and a series of thyroid hormone blood tests.