What lies ahead after a total thyroidectomy?

Hi, 

I am in exactly the same boat as you. I had a partial thyroidectomy on 3rd November to remove the right lobe. They found a 40mm papillary carcinoma with a follicular varient. 

Following my surgery I had a catostrophic infection that ended with me needing emergency surgery and some time in intensive care. It very nearly killed me. 

I was told on Monday I now need a Full thyroidectomy and I am terrorfied. I'm worried about the surgery, about the medication and how life will be after. 

I don't have any advice to offer really because I'm a little way behind you but wanted to say I totally relate to your post. I have been reading a lot of thyroid stories and found them awful people saying they were buying medication off amazon and craziness like that!! 

This thread helped calm that a little, now if I could only remember how to sleep that would be great l :,) 

Best wishes! 

Hey Lindy,

As you've found, googling for thyroid stories is not the best of plans. More often than not, those stories are from people with a thyroid problem, rather than thyroid cancer. Balancing someone with a thyroid issue is much harder than balancing someone who has had a TT or a lobectomy.

And of course, it's also a lot more interesting, postworthy, and bloggable if you have a bad experience. Because the hundreds of thousands of folks who have a problem, get it diagnosed, and then get it treated don't have the drive to write about it.

If you think, how often do you tell people about your weekly food shop? But say while you were doing your shopping, someone was rude to you, you were overcharged, and the ceiling fell down..... you'd tell pretty much everyone about that experience right? Lol. Same goes for medical problems. If it's all fine and dandy then no-one needs told, if not - you shout it from the rooftops.

And unfortunately, the thyroid keeps getting a bum rap and blamed for all sorts.

So, please don't Google for any more stories. It will only make you worry when honestly there's no need. Sounds like your previous experience has shaken you, and no wonder, but that's honestly not the norm. I'm sure your completion will go swimmingly, and your thyroxine level will quickly be found and sorted.

As for sleeping, less stress is a good start. Aka, don't Google and make things worse!

Lass

Xx

Hi lass,

I have given myself a google ban! 

My surgeon gave me a pack with loads of information in so I'm going to stick to that for now. 

I know at some point this is all going to hit me, I haven't had a cry yet because it's not sunk in I think I need to all sink in and to have a good cry! 

Lol. Good plan on the Google ban. 

If you need info then; Macmillan, NHS, and cancer research are the sites to stick to. If you need stories then; Macmillan, and The Butterfly Thyroid Cancer Trust sites are good for those. Other than that, then I'd suggest to steer clear of the internet for now.

And it'll probably happen when you least expect it - the cry. Possibly even once you're all done and dusted and classed as cured.

But we're here should you need us, at any stage.

Lass

Xx

Hi lindyapple! 

I'm glad this thread has helped you. The     people on here are great and have really settled my nerves. Last night was my first good night's sleep! Sorry to hear about your infection. That sounds awful. Mine wasn't too bad but I was on holiday at a caravan park with my kids at the time and had to go to an unknown doctor/hospital so it freaked me out a bit (as well as spoiling my holiday!) Try to keep strong and I hope you get some sleep too! Keep in touch. I feel that this is the site that will get me through the next few months and keep me sane! 

Hi ob78!

Just wanted to say hi, and echo a lot of the things others have been saying. I too was worried about getting the medication balanced after my total thyroidectomy (after being diagnosed with papillary thyroid carcinoma). Had my TT on 1st Aug, after an initial op on 27th June. It's taking a while to get medication right and had it upped twice, but other than feeling more tired than usual I don't think it's made me feel much more different.

I too am a teacher, so can totally understand your worries and fears about standing up in front of a class at the moment. I had my first op on 27th June so have been off school since then and still don't feel well enough to return. I'm getting my energy back slowly, but as you said, the thought of standing up in front of a class and teaching at the moment still feels terrifying for me. My school have been fantastic though, and completely understand that I can't come back until I'm completely ready physically and mentally. However, as with most people, my 6 months on sick pay will end mid-Jan so I'll have no option really other than to go back to work. Just hoping I feel up to it then.

Hope you're ok and if you need to chat, we're sll here!

Hi

I hope you don't mind me reply 2 years on but I got papillary thyroid cancer this Nov. I had a TTT on 12th Dec. 

I am also a teacher and don't know how I will ever return to the classroom. I keep reading that people are ready to go back to work a week after surgery. I was in hospital 5 days and now 2 weeks on I am still experiencing discomfort and tire easily. I can't sleep at night and swallowing is still painful. 

Will I be me again? 

Helen. 

Hi Helen

I had a total thyroidectomy in October 2018. I finished my treatment in January last year.

I didn’t feel I could go back to work and concentrate until I had got through all my treatment.

I know everyone is different but I had no energy and was falling asleep all the time. 

Since being back at work ( I went back in May) and back to normal as much as you can be I feel a lot better.

I will be honest I haven’t gone back full time as I was before but that partly due to not rushing back into things and partly because it made me realise that life was too short not to be at home more with my babies.

Could you look at a job share maybe or shorter hours initially to see how you feel and ease you back in?

I hope everything goes well for you and you start to feel more like your old self soon but if your like me it will take time.

G xx

Thanks for your response.

I am falling asleep all the time too. It is amazing how rough I feel with such a little scar. 

My doctor has given me a sick note until the end of January which will be 6 weeks post op, so I will see how I am then. I will definitely look at part time as just like you I am starting to think is it really worth it for a few extra grand when I could be more involved at home. 

I am waiting for histology to report back to the MDT and see what is next.

Amazing how quickly your perspective of life changes. 

Helen x

Hey there Helen,

How are you doing and feeling now? Any better?

Lass

xx