Hemithyroidectomy for Thy3F nodule

[Rory1978]

I’ve had a diagnosed thyroid nodule since autumn 2023. It was biopsied Jan 2024 and classified down from a U3 on ultrasound to a U2 on biopsy. I had it re scanned and biopsied this January with a view to discharging me. The ultrasound showed it to look much the same, no real change in size or appearance however I just got the biopsy results back and this time they’ve left it at U3, specifically thy3F which I’m rather wishing I hadn’t googled and the letter says in this situation they recommend a hemithyroidectomy.
Fortunately I already have a consultant appointment booked for 10am tomorrow so I don’t have very long to wait, but I’m struggling with this unexpected turn of events and spiralling a bit.

I don’t have time for surgery and recovery, we have so much going on at the moment.
I had surgery last spring (entirely unrelated) and was so poorly from the anaesthetic so I’m worried about having another… in face anaesthetic in general terrifies me, what if I don’t wake up?!
what if it does turn out to be cancer. My children are young, I just want a normal childhood for them!

See, told you I was spiralling!

Practically, for anyone with experience, I have a few questions:

1. How long were you in hospital for?
2. How bad was recovery/side effects?
3. Have you needed thyroid hormone replacement?
4. How long did you have to wait to find out the results?
5. If it was cancer did you then need the other half of your thyroid removed?
6. Again, if it was cancer, what other treatment was needed?

Its really good that you have an appointment so soon!

Not me, but my.mum had thyroid cancer but one of the less common ones. Lots of medical professionals call thyroid cancer the 'good one' to get as it is so treatable if its papillary/follicular. So hold on to that thought.

She had a full thyroidectomy and recovered really fast. It was astonishing. It did take a while to get the thyroid meds right but nothing awful.

Hopefully all that reassures you!

Thank you, that is really reassuring. I just can’t believe I’m here. Last time I saw the consultant she said ‘let’s scan again and do one more biopsy and if it’s unchanged I’ll discharge you’
I was fully expecting to be parting ways, not getting more complicated!

Hope you got on ok today.

Thank you, just got back. The consultant was very good and pretty much answered all my questions without me even having to ask which was great.

the shocking part is that he said the op will likely be within 4 weeks which makes it seem very scary and urgent considering in the previous breath he said the chances of it being cancer were 20-30%.

They have to remove about 60% of my thyroid due to where the nodule is so it’s possible ill need thyroxine afterwards.

Ah, it's better out if they have even the tiniest inkling of a chance of cancer. And having too long to think about it might drive you batty.

Did he give any indication of recovery time?

How are you feeling about it all?

Yes I’m thankful it’s happening quickly really, just a little shell shocked.
recovery wise he said 1 night stay in hospital, 2 weeks off work and no heavy lifting for 2 weeks. There are risks around vocal chords which could mean speech and language but they’re minimal. He also said that most likely I wouldn’t need any further treatment even if it did prove to be cancer. It’s very small at the moment and he’s confident they will get clear margins.

Im ok, it’s going under general that scares me more than anything else. I have a very real fear of not waking back up and leaving my children motherless.

I had thyroid cancer last year, it’s good you are in the system and you like your consultant!

For me, my biopsy kept coming back inconclusive, but my lump kept growing and it was annoying me. My previous consultant had said I could leave it, my current consultant said very calmly he would like to remove it and that was what he strongly advised.

My hemi was booked really quickly after that (within a week) and I had what turned out to be a 5cm tumor removed from the left side of my thyroid. I’ll be totally honest, I was really cocky about my recovery (I even took my laptop to hospital so I could work!) and then thoroughly humbled! I had a drain but begged to be let home after 1 night anyway.

in terms of recovery from my hemi, I was quite poorly and had several infections which really slowed me down and landed me back in hospital a few times. At about week 2/3 I felt like someone had unplugged me and I was suddenly exhausted in my bones - they gave me a small dose of thyroxine.

My biopsy came back at about 3/4 weeks I think to say it was minimally invasive follicular thyroid cancer - which was shocking, but equally I felt like I was in really safe hands and everyone was very calm about it. As mine was minimally invasive and presence was found in my blood vessels, I needed the total thyroidectomy and then RAI. I’m currently checked every 3 months, but I’m hoping my risk factors can be downgraded and that lessened soon.

The recovery from my total was SO easy by comparison, I could have gone back to work after a week. This time they put me on antibiotics before the surgery to ward off infection (this seemed standard to them so may be worth asking about for your hemi?)

They accidentally took my parathyroid gland tissue as well so I have had some issues with calcium levels tanking which doesn’t help with fatigue.

I’ll be honest, I was very much sold the “you just take thyroxine and will be fine” line and have struggled with that a lot. HOWEVER, my thyroxine is kept high to suppress my natural levels so I’m not optimised to feel good, but rather stop the cancer returning. If you just have a hemi then you have more flexibility with your dosage.

im also not saying this to scare you, but my hair fell out quite considerably after my hemi, my skin was incredibly dry and itchy too. Until you get the correct dosage, this is quite common apparently. There are lots of fb groups you can join - but also remember they are swayed heavily to those who have issues. Any one who sails through it will not be seeking help from people in a support group, so don’t let it scare you if you do join. Happy to answer any questions if you have any x

Hi @Floophmy biopsy in 2024 was thy2, and really the consultant was all set to discharge me as it hasn’t grown since then. This biopsy was really just a ‘belts and braces’ make sure everything is definitely ok.

I’ve got my pre op next Friday so my op won’t be before then, but I imagine it won’t be long after. My nodule is less than 2cm. Tell me about the drain, it’s something he didn’t mention. Was it because of bleeding?
Infections in the wound is that? That’s scary. I’ll make sure to keep a very close eye on it.
was that a one off dose of thyroxine or were you then going to be on that permanently? Obviously you are now anyway after having a total.

in a weird way I’d feel better if they just removed the whole thing, especially as I do have a tiny nodule on the other side which is too small to biopsy. I’m going to email the nurse and ask about this other nodule.

I will ask about antibiotics just in case.

Will you be on that dose of thyroxine forever?

So the drain was because I was bleeding a lot and because of the size of what they removed, the blood was pooling in the space left behind which can be dangerous. My consultant told me before hand he rarely used drains and not to worry about it, so I completely panicked when I woke up and had one in. There was a few of us on the ward with them though, so I don’t know how common it is in reality.

The drain doesn’t hurt, but it’s stitched on to your skin and you basically have a bag of blood pinned to you. It pulled my skin though so it stung me a bit, and I just hadn’t been psychologically prepared for that. You are at 2cm so hopefully it won’t be needed for you.

infection was in the wound - I had to have it drained a few times by syringe and it just seemed to not respond to antibiotics till they hit me with the good stuff! The second surgery he said straight away he would start me on antibiotics as preventative course so def ask about it, even to be reassured you don’t personally need it and I was a one off!

The dose of thyroxine after my hemi was very low - sometimes your thyroid is a bit sluggish and doesn’t compensate for the missing bit straight away. They upped my dose after the total but hopefully once my risk of reoccurrence is lowered I can change my thyroxine dose to optimise how well I feel.

I do understand the desire to just have a total - what did your consultant say about it? I was an absolute wreck going into my second surgery as I’d found recovery so hard after the first, and it was a total breeze, so I think a lot is down to luck and how tour body responds.

some things I found invaluable, a kids chair pillow thing like [[https://www.dunelm.com/product/bunny-cuddle-cushion-1000276311?defaultSkuId=31009018%5D%5D www.dunelm.com/product/bunny-cuddle-cushion-1000276311?defaultSkuId=31009018]] as you can’t sleep lying down fully or on your side for a while. I found this better than the pregnancy pillow as it was more upright. Also, straws to help you not have to move your neck! Oh! And take a pillow for the car journey home - your head might feel like it’s going to wobble off so you need to support it!

I completely forgot to ask him about it. The other tony nodule slipped my mind completely. I have an email address for questions though so I can email in.

Thank you for sharing your experience, I do appreciate it and I’m so sorry you had such a hard time.

why can’t you sleep laying down?! I hadn’t even considered this!

It’s to keep the swelling down I think?! Or blood flow maybe?! I know blood pooling in the area is bad, so it’s probably that!

My op is this morning. Terrified!

Hey Rory, I only saw this just now. How did you get on? Hope you're doing ok.

Well this is harder than i anticipated - I was out of theatre at 11.30 yesterday morning and still feel like I’ve been hit by a truck. Have had to take some more anti nausea as seems standard for me with anaesthetics. Aside from that my biggest problems right now are feeling like I have so much plehgm to clear but can’t cough properly and what I assume must be heart burn which I had read can be worsened by this surgery. I have codeine to take for bedtime so I’m hoping that just knocks me out for the night

Ahh I just found this! Are you home now? Keep on top of the meds and sleep as much as you can. Recovery is tough, but one day at a time and you will start feeling better really soon. The anaesthetic will still be in your body which doesn’t help. Did you have the hemi or total in the end? Thinking of you @Rory1978

I had the Hemi - hoping so much they don’t turn round and say I need the total because I’m not sure I can do this again. I got some sleep but sleeping upright is so hard for me. I also have terrible pain in my jaw/teeth on the side they removed. It comes and goes, but when it comes it’s really bad. Did anyone else have this?

oh bless you. I felt the exact same way - I ugly sobbed in the waiting room for my total because I felt like I couldn’t do it again. That said, my total was honestly a breeze by comparison and a totally different experience. Take it one day at a time and worry about that later if you need too.

i had jaw pain too - I think it’s from the position you are in for the breathing tube? I just kept topping up and staggering all my meds and didn’t let anything ever run out so I was never cold turkey without pain relief. I had to write it down to keep track as I was such a zombie. Did you get a pregnancy pillow or one of those pillow seat things? They really helped me with the sleeping angle. Use straws so you don’t need to bend your neck to drink too.

Your body has been through a lot, your hormones are going to be completely wonky donky for a bit. Give yourself enormous grace and keep thinking that every single day you are a step closer to feeling better ❤️

Yes I have a v pillow. I think I’m just so used to sleeping on my front that sleeping any other way feels impossible.

did you have any problems swallowing liquids after? I’ve choked while drinking water a few times now, like it’s ‘gone the wrong way’

Try tipping your head on the side to swallow. And if it carries on get a speech and language therapy referral.

Hang in there.

Hey @Rory1978 how are you getting on? Any easier?

I think it is feeling a bit easier. I’m fed up with having such a weak voice, it’s exhausting having to keep repeating what I’m saying because my family don’t hear me!
I think the drinking thing has improved, I still feel like I really have to concentrate on my swallow when it’s just liquid though.

When did you remove your dressings? I’m desperate to take them off but obviously don’t want to risk infection! Or opening the wound up!

It sounds like they've tweaked your vocal chord nerve. Do try the head tilt for swallowing, it can really help.

I think the dressings were off pretty quickly to be honest. Just instructions to keep it dry for a few days. What aftercare instructions did you get? Do you have a follow up appointment booked?

Your gp will be able to help, don't think that because you've had surgery and hospital involvement that they wont help. They absolutely will! Don't be put off using them if you need to.

@ThroughTheRedDooris that temporary? Please
say it is. The hoarse voice is driving me crazy. It’s been 5 days. I can talk if I talk very softly, but if I try to speak normally then it’s very quickly gone! I didn’t get any aftercare instructions - not in writing anyway. I saw the surgeon before my op and he said not to use a towel to dry it if I get it wet, but didn’t say anything about when I could remove dressings. And I didn’t think! Perhaps I should make a gp appointment….

For anyone reading this in the future thought I’d do a little update one week post surgery. I was in recovery at 11.30am so this is almost exactly
1 week.

I'm feeling a lot better and don’t always remember my pain killers now unless they happen to be due when I’m eating because swallowing is still very painful. My voice is a tiny bit stronger, although I still can’t talk much without losing it. No one at the hospital has got back to me as to whether this is normal, but im encouraged by the fact that drinking brings the voice back.

My neck is quite stiff and the skin feels tight under the dressings. I tried to drive yesterday and turning my head to the right was tricky. Also looking up seems to hurt the most - I guess it stretches everything!