Getting more tired and fatigued

Hi

I'm sorry to read how tired you're feeling and it's natural to worry that you might feel worse once you've had your total thyroidectomy later this year.

Whilst I don't have the experience you're looking for I noticed that your post hadn't had any responses yet. I hope you don't mind me suggesting that while you're waiting for replies, if you type 'total thyroidectomy' into the search bar in this group it will bring up lots of previous posts from people who have had one. You could have a look through the more recent ones to see how others have coped and reply to any of the posters if you think they can help you further.

Wishing you all the best

x

Hello

Might I hazard a guess that your doctors haven't put you on thyroxine yet? Have you had any blood tests yet to check whether your remaining half-thyroid is doing its job.

That's the most likely reason that you're exhausted.  When the completion happens soon after the initial hemi, it's often possible for the remaining half to keep you going between the two ops. However, if the current Covid situation is delaying your completion, you might need a bit of help. Please ask your surgeon if you can get some blood tests done so you can find out if you need some medication to keep you going until your op. 

Hi latchbrook

Your advice would be good if you'd suggested she search for hemithyroidectomy or partial thyroidectomy. Total thyroidectomy isn't going to help much. But thanks for trying.

Hi Amaryllis,

If you’re worried about feeling fatigued after a total thyroidectomy I wouldn’t worry too much. I recently had mine removed and a neck dissection, apart from post surgery tiredness during immediate recovery I’m fine in that respect now. They start you on thyroxine to replace what your body is missing and check your levels/ make adjustments. Have you asked the doctor in charge about this? They should be able to put your mind at rest. I hope it all goes well for you, spring will be arriving soon too and that usually perks us all up :)

Hi barbaral

You guessed right. I'm not on any thyroxine yet. I haven't had any bloods done since my partial to check thyroid levels.

Unfortunately I'm quite a distance away from my surgeon and GP at the minute. I moved to England before knowing I had thyroid cancer, so the plan is to just fly home to NI when I need my 2nd op. The tiredness isn't so bad that it's crippling me or keeping me from doing basic tasks, so I might just need to wait until I get the 2nd operation and get the thyroxine then. 

Thanks for your reply :) 

Hi JJ72

I hope you're recovering well after your own operation!

That is really reassuring to hear about your experience after the thyroidectomy. The surgeon has told me they'll put me on thyroxine after the surgery. The bit that was worrying me was that he did say it can take quite a while and a few dosage changes until the right dosage is found, and until then I will feel really crappy and tired! It's just annoying not knowing how long that will take, I like being able to make plans!

Thanks for the reply :) 

While we have all had similar treatments our experiences following thyroid surgery and how we deal with levothyroxine can be quite varied. I had my hemi 10/19 and after recovering from the operation over the first 4 weeks my remaining thyroid worked well and I did not need medication. My energy levels were great. My remaining thyroid was removed in 8/20 after covid delays and because i had follicular cancer I am taking a higher dose of levothyroxine to suppress my TSH. Energy levels are good but by the time I have been up and about for about 14 hours I start to flag and some evenings I can be totally exhausted. It is a process of finding the right level of medication and you will need to have regular blood tests and communicate clearly with your thyroid team on how you are feeling to help them get you on the right dose. Some folks find it straightforward and others less so but you will get there. All the best for your further treatment.

Thanks LangdalemanI'm finding that the worst part about it all is not knowing how I'm going to feel after the full thyroidectomy because of how differently everyone reacts. But it is reassuring to hear that not everyone gets massively fatigued after it. Thanks :) 

Hi, I just read your post from a while back.  Hope you're feeling better now.  I had a full TT from the start but it took a while to get my levothyroxine dose right.  It takes a while after changing dose too to settle and see. Mines been both much higher and much lower than where I am now. 

You said you were going back to NI for 2nd op. I'm in NI! I had my ops in the Ulster hospital. 

Hope you're well x

Ciara 

Hi Ciara,

Just back to work today after my completion surgery, and thankfully feeling pretty much completely back to normal! I've actually felt better after the TT surgery than the PT.

I'm on 150 micrograms of levothyroxine, and 3 weeks post surgery, I'm feeling pretty good, but haven't had any bloods done to check levels or anything, but hopefully it won't need changed too much. 

Yes had my first operation in Daisy Hill, then moved to England before knowing I needed a TT (couldn't have timed it worse!). So came back to NI at the end of February there, and had the 2nd operation in Craigavon.

Kathryn x

Edit:

I've just seen on another post you're an engineer, I'm also an engineer! Good to meet people with similar stories!