How do you know if the bit of thyroid left after a partial thyroidectomy is working?

Hi Daisy7 and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.

I can't help with your questions but noticed you hadn't had any replies yet. It sounds like you need to have a further chat with your surgeon or consultant so that you can understand what has happened and what the treatment plan is now. Do you have a clinical nurse specialist (CNS), sometimes referred to as a keyworker, allocated to you? If so you could speak to her and see if she can help with your questions or make an appointment for you to speak to your surgeon/consultant, if not you could speak to your consultant's secretary who could arrange for you to speak to the consultant.

x

Its very sad that you are on the macmillian platform and asked this basic question 2 days ago and no one has replied.  My Mum had her full thyroid removed, surgeon said it wasent worth doing half, she now takes thyroxin and her levels are up and down, when her levels are out first thing we notice is how tired she is and how low she is.  Your  gp can do a blood test to check your levels and should be doing this regularly. One thing i leant very quickly in this  whole process with my mum is ASK go in with your consultant with a pen and pad and write everything down, make them show you scans and explain what they mean, whenever they use medical terms which they do ask them what it means and if you dont understand ask them to explain again.   This is my first experience with cancer and im shocked to see patients trying to gain an understanding and knowledge of their condition on line, you are basically shipped in and shipped out of hospital and expected to feel grateful for the work they have done.  Im by no means a medical expert or even highly intelligent,, but please dont suffer in silence, bang on every door if you have to to get the answers you need and so deserve xx sending you a big massive hug tonight xx

Ps sorry for waffling on lol xx

Hi Kags123 

Thanks very much for popping on and sharing your mum's experience with Daisy7.

Whilst I can understand you feeling that

Kags123 said:

Its very sad that you are on the macmillian platform and asked this basic question 2 days ago and no one has replied

you have to remember that everyone here is either a patient or a relative/friend of a patient. They might not have the relevant experience to share or might not feel well enough to post a reply. However, I'm really glad that you were able to, and I wish you and your mum all the best.

x

Hi Daisy
The first week after surgery for anything is always likely to be exhausting. Usually, that's the after effects of the anaesthetic. 
People who've had only part of the thyroid taken often think that it must be their remnant thyroid shutting up shop. It probably isn't. 
You'll know better once you've had a couple of weeks for the anaesthetic to work its way through and out of your system.

If you have cancer, they may well go back and remove the rest. In which case, it probably won't be relevant whether the remnant works or not. 

Based on the dates, it sounds like you got your operation during the doctor's strike. It's not an excuse but it might be an explanation for them not sending you home with much information.

You just need to be gentle with yourself. Try to get some sleep - though it sounds like you're lying away and worrying. Feeling nauseous is probably a combination of the anaesthetic, any pain killers and a general sense of fear about what's to come. 

I've found that oncologists tend to be lovely people because they deal with people at the most terrible times of their lives. Surgeons are much better at dealing with human beings when they are out cold on the table. Some very lovely surgeons, but they aren't always charming.

How are you feeling a few days later?

(And in response to Kags123  not all the alerts work on Macmillan. I'm only here today because I got an alert on something else. We are not a big group and those of us who've been around a long time are busy getting on with life post-cancer and not visiting every day. We do our best.)

Hi Daisy7

Sorry you’ve been feeling so miserable and hope you’re now feeling a bit better. Apparently the remaining half of my thyroid was failing by the time I went for my total thyroidectomy (3 months later) - I had no idea though! This was found out from blood tests and I think I had the first about a month after my hemi. I think you feel very tired and cold if it’s not working properly but you’ll need a while to recover from surgery anyway. Do you have a specialist nurse you can speak to and reassure you on this?
Sorry I didn’t see this and reply earlier, I’ve been in and out of hospital the last couple of weeks having tests done to see how successful my treatment has been so I’ve not been on the website. 

Hi @daisy7 I just had my completion surgery about the same time as you. After my hemithyroidectomy I felt terrible for a good two weeks and really run down even 5 weeks later when I had to have my thyroid function checked before they took the other half out. I was certain I’d show lowered thyroid function but my levels were normal! hopefully you’ll have a similar experience.

My tumour was quite close to my vocal cords so also a complicated first surgery  I was worried going into the completion but it’s been easier this time. I’m not sure if that’s because the surgery was less complicated or if I was just better prepared. That said, I am completely exhausted again. I have a few good hours in the morning then it’s a nap and grumpy mood for the afternoon until I crawl into an early bed. It’s 9pm now and very very late for me!

The head and neck nurses at my hospital have been wondeful. Far more helpful than the surgeons. I see a different surgeon every time I have an appointment which is frustrating. 

I find it really helpful to bring someone else to the appointments with me as I find it difficult to advocate for myself sometimes and it’s hard to listen, process and ask questions at the same time.

Good luck! 

Hi @woofles

Thank you for replying, you have made me feel better about my exhaustion, I guess I just underestimated the reality of surgery

Sounds like we are going through very similar things, I am having good and bad days but still struggling with energy and the emotional upheaval of it all, frankly that is worse than the physical effects, I think I probably need some sort of counselling but don't have the energy to sort it.

I got the results from my surgeon last night, unfortunately I do need more surgery and the radioactive iodine, it seems though it is still papillary cancer it's the tall cell type which is apparently more aggressive.  At least this time I don't have to make any decisions.

I went private for the operation as my husband has healthcare at work but that means there is none of the support you get with the nhs, but I do get the same surgeon and he is very nice

Wishing you a speedy recovery

Vicky x

Thank you so much for the message, it's so good not to feel alone with all this, I think I just underestimated the effects, I have never had surgery before.

I am finding this chat very helpful, unfortunately so far I have only had contact with the surgeon as my husband has health care with work I went private for the operation

Best wishes, Vicky

I also went private for my treatment, After many years on this group, I think I can say that those of us who didn't use the NHS tend to wildly over-estimate the support that those who used it get. NHS support for more mainstream cancers is exceptional. For thyroid cancer, it's pretty pitiful.
You are really very unlikely to be missing much.