Some thyroid stories

CW: medicine, hospital, surgery, needles, anxiety. But it ends well 😉

A few weeks ago, I had a hemithyroidectomy (removal of half the thyroid gland) and, since there’s… mostly horror stories on the Internet, and mine went very well, I thought I’d take a moment to add a positive story out there for the anxious people like me trying to reassure themselves. And, since I had to manage my own anxieties the best I could during that time, I thought it might help others to see my path there.

First diagnostic

It all started back in June. I went in for a regular checkup, and my gynecologist looked at me and said “hrmm, your thyroid feels fairly large, and I think I want to send you to my endocrinologist colleague”. Now, for the context: I’m almost 40, and I’ve had doctors look at my thyroid with skepticism for roughly 20 of these years. Usually, they order a blood test, they say “all good” and leave me be. But it didn’t hurt to have it checked, so I took her advice and an appointment.

Said appointment happened a week later. The endocrinologist first gave me explanations about what the thyroid was doing, how it was working, what an enlarged thyroid could mean when it came to nodules and possibility of cancer and all of that. Function-wise, my thyroid was working exactly as it should, according to the blood tests; but its volume was a problem. He asked me if anyone had ever done an ultrasound (I said no) and suggested we did one (I said OK). The ultrasound is really nothing bad, there’s a bit of pressure, but that’s it. Since I was still expecting at that point to be let go with a clean bill of health, it was a bit of a shock to hear a/ there’s multiple nodules, on both sides of the thyroid, and at least one of these nodules is large enough to be an indication for surgery b/ he advised for a complete removal of the thyroid. His rationale was that I wouldn’t have to come back every year to have it checked. The other option was to do a fine needle biopsy to check that nothing bad was happening there and if not, check periodically that it doesn’t grow too much. In any case, the decision was not urgent (but for sure something needed to be done).

My endocrinologist and I exchanged a few emails and phone calls: I had a fair amount of questions, which he answered. But I was not any close to any kind of decision of what I wanted to do. I concluded that I wanted a second opinion. I tried to get that on my own, but cold-calling endocrinologists to get an appointment didn’t seem to work out. I finally asked my endocrinologist to refer me to a colleague. I was a bit nervous asking for that (it did feel awkward), but he was very enthusiastic at the idea, and he made me a referral letter for the “thyroid consultation” of the local hospital.

Now I must say that I’m kind of proud of myself. Historically, asserting myself has never been a strong point of mine; asking questions that I was afraid would seem “basic” and asking for a referral for a second opinion is NOT something that comes naturally to me. I ping-pong’d options with my husband and with a few friends (“does it make sense, can i actually do that?”), which helped. And I somehow managed to think of myself as a “project manager getting expert advice on something I can understand, but I’m not familiar with”. That mindset helped me gain enough confidence to ask the questions I had and get the answers I needed.

Second opinion

The delays for the hospital were a bit longer and my appointment there was set to the end of August. The couple of months in the meantime were not particularly fun for me. I went back and forth between the two options that were given to me, with the additional anxiety of “there’s a low, but significant probability, that there’s a cancer in there, and even if prognosis would be good if it were there, that’s still super scary”. It was, however, much better than it could have been. The anxiety was there, but the perspective of waiting for more information/opinions before I could make a (hopefully) more informed decision – and not being able to speed anything up – helped.

However, the question of the biopsy was very much on my mind. I didn’t have much information about it; it felt like a Big Thing. In particular, when it came to the invasive character of it, on a scale from ultrasound to surgery, I was not sure that it wasn’t closest from the second end of the interval. The internets were not very reassuring with the whole procedure, which was quite scary, and the words “well if I’m going for a biopsy anyway I may as well go for the surgery!” probably have been uttered.

Finally came the day of the consultation at the hospital. The appointment started in pretty much the same way as the first endocrinologist appointment – some explanations, some questions, an ultrasound. And then the doctor suggested to do the fine needle biopsy in any case… “actually, we can do that now if you wish”.

Considering the previous trains of thoughts, being given the option of going through with it on the spot was probably the best thing for me, because I didn’t have time to second-guess, wonder and worry. It also put the procedure clearly on the “less invasive” side of the scale if they were willing to do that without any advance notice. Plus, my husband was with me so he could hold my hand too 😉 Off to the biopsy room we go!

The person doing the procedure was very friendly and spoke a fair amount of French – we had a few laughs, which helped during the whole thing. He started saying that it was essentially the same kind and amount of pain as a blood draw – except somewhat longer, ultrasound-guided, and moving around a bit. The ultrasound had identified three nodules, and these three nodules needed to be poked at, so that’s what he did. After the first two I was getting visibly anxious, he went “you know, from what I see on the ultrasound, the nodules are very probably benign, so don’t worry too much”, to which I answered, MOSTLY jokingly, “you’re stabbing me in the neck, I HAVE REASONS TO WORRY” 🙂 Anyway, the procedure was quite unpleasant, and significantly more painful than a blood draw, but still completely manageable, and nothing I’d be afraid to repeat if necessary. And all in all, kudos for the hospital efficiency: between the hour of my appointment and being on the tram back home, including a surprise biopsy, less than an hour and half had elapsed.

A few days later, I got the hospital doctor on the phone, who told me that the biopsy was indeed clear (there was one nodule for which the results were not conclusive, but other factors on that nodule made it apparently very, very probable that it was not a problem). My whole medical record was then to be presented in front of the hospital “thyroid commission” later that week so that they could make recommendations. Said recommendations came a few days later, both as a phone call and as a copy of the letter the hospital sent back to my referring doctor. I appreciated getting the copy of that letter: it made me less anxious about something being forgotten or omitted. I also got numerical values (“standard value is 18mL, we measured that one at 55mL”), which I found interesting.

Recommendations and decisions

The recommendation of the hospital thyroid commission was to remove not all the thyroid, but only the right half of it. While there’s still a significant nodule on the left side (that would require yearly monitoring), there’s some probability that it doesn’t grow too much anymore, and there’s (more importantly) a large probability that half the thyroid is enough to keep a full thyroid function, and that I wouldn’t need to be supplemented in thyroid hormones.

My referring endocrinologist called me back when he got the letter; he explained that he agreed that this was a perfectly valid approach (but that removing the whole thyroid and be done with it was also reasonable); at this point, there seemed to be a consensus that the right part was definitely large enough to warrant surgery anyway. The major question was “why operate at all since this is actually not bothering me?” The answer I was given was two-fold: a/ there’s a significant probability that it continues growing (it may not, it might even shrink) and that it will eventually be a problem for breathing and/or for eating; and b/ the larger it grows, the riskier the surgery becomes (especially since there’s a fair amount of STUFF going on in the neck!)

I was consequently left with a choice:

  • removing the whole thyroid, which had the main advantage of not having to worry about it anymore, but the main disadvantage of being guaranteed lifelong hormone supplementation and probably a few months to find the right hormone balance (and the associated symptoms of hypo/hyperthyroidism when trying to reach that equilibrium)
  • removing half of the thyroid, which had the main advantage of having a significant chance of having ~0 impact on my daily life after the surgery recovery, but the main disadvantage of a significant probability of having to go through the surgery again in a few years if the left half grows beyond what’s advised to remove.

In any case, it became time to talk with a surgeon. My endocrinologist gave me a few options for the referral, both inside and outside of the city; I also had an insurance policy that opened a few private options that would have been more complicated otherwise. Both him and the doctor at the hospital emphasized that it was important to get a surgeon that was doing that operation routinely and “not, like, once a month”. While this bothered me a bit (“Isn’t it true for all surgeries? And how, as a surgeon, can you get to do these surgeries routinely if you don’t get referred the patients to achieve that goal?”), I followed that advice, and opted for a highly recommended surgeon in a private clinic in the city. (I am, incidentally, very grateful that it was at all an option!)

Before surgery

My endocrinologist sent a referral, and I saw the surgeon a week later. The clinic felt weird: the entrance looked much more like a high-end hotel than a hospital… But the surgeon made me a very good impression. One of his first questions was “so, what do you know about your situation?”: I thought it was a smart way to have an idea of the person in front of him, about what they knew, and about the appropriate level of explanations. And, of course, it tickled my “good student” sense when he approved of what I was saying 😉 (Also, he had a neat collection of minerals in his office 🙂 )

He went through the whole thing himself, presented the total and hemi- options again, explained the pros and cons, made very clear that both options were medically valid and essentially a matter of preference for the patient. Some would prefer to get rid of the whole thing to be sure to avoid the monitoring and a second surgery, some would prefer a more conservative approach in the hope that everything would work out that way. We had discussed both options with my husband before the appointment, and we were both preferring the “conservative” approach; nothing the surgeon said clashed with the arguments we had made ourselves, so I decided for the hemithyroidectomy. At the end of the appointment, I signed the preliminary paperwork for the surgery (after having been told that these were not binding and that I could change my mind at any point), we planned the surgery for the end of November, and we made an appointment for an extra ultrasound and a pre-operative consult a week before the planned surgery.

In the meantime, I got some paperwork from the hospital – questionnaires to fill in, information sheets about anesthesia and so on and so forth. That was not entirely devoid of anxiety – “yes, I can walk up two flights of stairs, but I’d be a bit out of breath, what should I put there?” and “okay, I’ve been told repeatedly that my blood pressure numbers where on the wrong side of borderline, does that count as having high blood pressure?” – which I solved by adding a couple of notes next to the corresponding questions. Yes, I second-guess and I overthink, but for once I let other people deal with my overthinking and ask me questions if they deemed it necessary.

During the pre-operative consultation, I got yet another ultrasound – but for which I got a card with a link to my imagery! So I could look at the images on my computer! I’m definitely nerdy enough to appreciate that. We confirmed options with the surgeon and gave the final “okay, let’s ship it” for the hemithyroidectomy. That week, I also had a phone call with the anesthesiologist to double check that everything looked good and that there was no particular precaution to take with me.

Still, the perspective of surgery was very scary. Yes, I was in a good position for a good outcome. But still: accidents happen, and, well, they were going to literally cut my throat :p The whole “but what if things go wrong” was definitely keeping me awake at night. I eventually realized that the anxiety was less about the bad outcomes and more about not having planned for them. So, as overreacting and overly dramatic that it may seem for such a “routine” surgery, I made plans. I created a document for what I wanted to happen in case I died. It mostly had to do with “who should be contacted and how / in which order”; a few administrative details; and accesses to various digital accounts (because let’s face it, a significant portion of my life is linked to these.) I also prepared documents/directives for “what should happen if I’m alive, but not in a state to make decisions myself” – I was happy to see that Switzerland has standard forms for this (Patientenverfügung, in German, French and English, both in a short version and in an “extended” version.) This was not fun, but it felt surprisingly peaceful. Thinking about what I wanted, and writing these things down, gave me some peace of mind; it was not without tears, but it actually never felt dark or depressing. I shared all of these documents with my husband, we talked about them, and it was a good conversation to have had. (And, to be honest, it IS getting more and more probable with age that a bad thing happens, and having these “ready” is probably a good thing anyway.)

I also prepared for the “everything is all right” case. The surgeon had told me he’d call my husband as soon as he was out of surgery to tell him how it went; I told my husband to send these news to a few people early. I also expected my cognitive abilities would be fairly reduced after surgery, so I prepared a list of people I wanted to contact myself as soon as I felt up to it.

Hospital stay

Finally, the dreaded surgery day. I was supposed to be at the clinic at 6.30 (ow) and I was still allowed to drink water until 5, so I set the alarm clock at 4.45 to avoid the grumpiness of being thirsty on top of being stressed out. We arrived at the clinic, filled in the admission form. There was a first moment of panic when the person handling the admission told me “so you’re staying three nights” and I went “BUT BUT BUT I’VE BEEN TOLD ONLY ONE NIGHT”, and I kind of lost it. They kind of backpedaled (“well you know they put 3 nights by default but of course if the doctor thinks you’re good to go tomorrow you’ll go tomorrow”), which ended up being… “good enough” to calm me down a bit. Other than that, I answered probably five times that I had no allergy that I was aware of, I dressed in a hospital gown and hospital underwear (first time I saw that one, and that’s definitely a welcome change) and ended up fairly quickly on my way to the operating theater.

I don’t remember much then. I remember that there was a lot of people around me for preparing the anesthesia; I remember being very afraid (because anesthesia is super-scary); I remember they had heating covers that were nice; I remember someone trying to soothe me (and actually being pretty good at it, and I think it was before they plugged anything in the IV)… and I remember waking up. As far as I remember, my first sentence was “Hey, I’m not dead!”, to which the person next to me answered “Nope, all good, you’re not dead.”

Then came the waking up in the recovery room – I spent a couple of hours there, everything was okay. I remember seeing the surgeon coming to me, telling me “well it was a good thing we did the surgery, I removed a mass like THAT, and it went well”. And after that couple of hours, I was back in my hospital room, reasonably alert and okay. And it was even early enough that I could get some lunch! I was surprised (in a good way) that they’d allow me to get “normal food, but on the soft side” that early. I didn’t eat much of that first meal, because I still felt quite groggy, but I felt well enough after that to send a bit of news to the people on my list… and even to post a post-op, masked, selfie on Facebook 😉 I was also allowed to get up very early – they told me to ask for help for the first time, but then they let me be after that since I was apparently able to handle it. Which was good, because it sure felt like there was diuretics in the cocktail they injected during anesthesia 😀

The doctors and nurses also told me explicitly “if you have pain, please let us know early: it will NOT get better on its own right now, and painkillers do need some time to act; do not wait, tell us”. I liked that approach, it removed a lot of second-guessing and of “will I look like a wimp if I say I’m in pain?”: it was clearly a “tell us, and we’ll handle it as we see fit, don’t solve issues for us” kind of deal, and that helped. So I did, they handled it, and generally speaking it went well.

I don’t have much memories of that first afternoon either. I know Pierre was there. I know he went to fetch me earplugs for the night: I had as a roommate an older lady who had difficulties to breathe, which was tough to hear… I know I talked to people on various digital channels, and I’m almost sure I didn’t say anything I’d regret, but I also know that I felt more alert and coherent than I actually was. I also got dinner, normal-food-no-restriction, and there I ate everything (it was tasty 🙂 ).

The night was not very pleasant. I was warm, and then cold, and then warm, and trying to switch between covers that were not super accessible, especially considering the lack of mobility of my upper body (that’s where you’re happy with the little abs you have, because they ARE better than nothing.) There’s been a couple of controls of my blood pressure and temperature during the night, it seemed okay. My roommate switching on the light at 3AM to (as far as I could gather) eat some fruit salad was not pleasant either, but I managed to gather enough compassion (and probably fatigue) to not care that much. The earplugs were definitely appreciated, though.

On the next morning, I got breakfast (which was good – there was a lot of options!), as well the menus for lunch, dinner, and next morning’s breakfast. Since all the information I had by then were that the surgeon would see me at noon and that, if everything was okay, I’d be out after that, I didn’t fill in the dinner and breakfast part. That generated a lot of questions from the food service people: obviously they wanted me to make choices early if I was going to have my meals, but it felt wrong to commit to something I was expecting not to happen! The surgeon ended up coming to see me around 2PM, and he indeed told me I seemed to be well enough to go home. I gathered my stuff and got out of the hospital… quickly 🙂 Nice touch: I went through the reception to officially check out, and I got a tin of chocolate biscuits (which were actually very nice!)

All in all, the whole stay at the clinic went as well as can be expected: the people were very nice and attentive, and the communication was generally good, in that I mostly knew what to expect, which alleviated a lot of anxiety.

Recovery

Brain and energy

As well as the hospital stay went, I was very relieved to be home (because there’s no place like it 🙂 ). Pain-management-wise, I went home with a few grams of paracetamol per day for a few days, which both necessary and sufficient, so that was not an issue. However, the first few days were a bit tough on my morale: I felt mostly okay, but I had a tendency to fall asleep very quickly at random times. I could feel good one minute and fall asleep on my chair the next minute. It was also tough to realize a posteriori that states where I felt in full possession of my mental faculties were actually… not. That was somewhat scary because it made me realize how bad a brain can be at evaluating its own state (or, at least, mine can be, obviously 🙂 ), but it is valuable information backed by experience, which is worth having. My energy levels went better and better as days went, though. They kept being “hard to manage” for a bit less than two weeks, because I had no “girl, you’re overexerting yourself right now” signal that I could detect anymore, which meant that I kept going over my limits without really realizing it before it was too late.

A week after the surgery, I had an appointment with the surgeon to remove the stitches. When I mentioned that I did have a hard time handling the changes in energy levels, he added a week to my sick leave and, while I was a bit skeptical at the beginning (“I could… probably… work? I think?”), I was very grateful on the next Monday that he had done so, because I was definitely not in a state to be productive.

I usually have a hard time with taking the necessary recovery time when I’m sick or when something bad happens (and I have a hard time disconnecting from work in general). But I’m happy to report that I did manage to get through two weeks of sick leave without too much guilt and pressure to “be recovered already”. Managing to give myself some slack during that time is something I’m actually proud of 😉 (Little victories!) In the end, it was a major surgery, and my body did need time to heal, and energy cannot be spent everywhere at once, and I was actually mostly okay with that. There has been times of “I’m never going to be better” and times of “I should be better already”, but they felt very limited compared to what they would have been a few years ago.

Once the bulk of what I identified as “surgery recovery” (which lasted for roughly a week, by my estimations), I believe that I went through a short bout of hypothyroidism (although I don’t have the labs to back it). Brain fog, super-check, fatigue, check, apathy, check, cold sensitivity, check, constipation, check, dry skin, check, lack of appetite, check. That was not pleasant, and that was actually a question I had not asked (and information that was not provided unprompted). I have a check of my thyroid function planned for mid-January, which makes me think that it can take up to six weeks or so for things to come back to “normal”, but I had no idea about timelines of “what is normal, what is not”. I ended up doing a tiny bit of Internet research (instead of pinging my doctor, which may have been the smart move…) and came to the conclusion that “okay, there’s a post-op hypothyroidism for a bit more than 50% of the people, and it seems to have at least a decent probability to come back within a couple of months”, which reassured me a bit.

And, lo and behold, two weeks to the day after the surgery, it felt as if the brain fog lifted at once, and everything felt normal again. I don’t have the labs yet, but I’m actually not worried anymore, and I do believe that my half-thyroid woke up and picked up the slack of the half that has been removed 🙂

Interestingly enough, the first “symptom” of everything being back to “normal” was spending a “normally shitty night”: waking up around 4, and having a very hard time falling back to sleep because brain decides to latch onto something and then something else instead of, well, sleeping – but that felt… normal. (Yes, it sucks, but it’s normal-suck.) And, essentially, since then, I feel like myself again, and that’s nice.

Physical recovery

On the strictly “physical” side, not much to be said. My surgeon had told me that I should start stretching my neck the day after surgery (and showed me how), so that’s what I did… not very thoroughly, I must admit, but thoroughly enough that it doesn’t bother me in the course of a day (there’s still some very light stiffness if I look for it and if I’m being completely honest).

My throat has been itching/painful for a bit more than a week, I think; at first I was kind of worried that it was a bit long, until I realized that my hand had not yet fully recovered from simply having had an IV stuck in there for 24 hours. Still: being significantly aware of one’s throat during an epidemic that has “sore throat” as one of its symptoms, do not recommend. In the first few days, I also noticed that I… couldn’t hold a note while singing in the shower: that was weird, but it’s now fixed too 🙂

The whole energy levels thing, aggravated by my usual lack of motivation on the topic, has been my current “excuse” to not really restart any kind of physical activity yet (well, I’ve been for a couple of walks, and I assembled a couple of IKEA armchairs); that’s the last step I see right now, and I’m going to try to do that before Christmas (hey, I have a full two days left!).

And as for the scar, I’m super happy. Yes, it’s visible, obviously; but it’s very, very thin, it’s low enough that it does get at least partly hidden by the t-shirts I usually wear, it’s in a fold of my neck so it’s not shocking, and I expect that when it will have faded away it won’t be very noticeable. I am a bit self-conscious about it right now (more than I thought I would be, to be honest), but mostly on a “social conventions” point of view! (I kind of want to show it off because hey, it’s a fairly large scar, and it’s… cool in a weird way? but I can also definitely understand people being made uncomfortable? So I don’t say anything.)

Conclusion

Well, this was a very long post, and if you read all of it, congratulations (and thank you for bearing with me 🙂 ). I think this was a fairly exhaustive (and possibly exhausting) depiction of everything that happened with me and my thyroid in the past half-year or so. These were weird times, these were scary times, but I feel they went as well as they could. There was obviously some luck and a significant amount of privilege involved (I have health insurance, access to great doctors and medical facilities, the possibility to take sick leave off work, supportive husband and friends – all of that helps a lot!!) I still hope that my anecdotal recount may have been interesting to people who know me and are curious but afraid to pry (don’t be 😉 ), or to people who don’t but stumble here trying to find a bit of reassurance: yes, it can go well 🙂

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