Symptoms to expect after Thyroidectomy

Hi Cazzyh,

Sorry to hear you are going through all this.  I had a couple of small papillary carcenoma's. And a follicular neoplasm. I only had a hemithyroidectomy and they are going to monitor me for the rest of the thyroid. My remaining gland is not producing enough thyroxine so They have recently increased my medication. My TSH shot up to 56 and T4 down to 5.6. To be honest the only symtoms I have are feeling a bit cold and tired. I can still go for a run and I walk a few miles every day.  I haven't found it too much bother to take the medication....I just get into a routine of taking it and I'm making sure it's not ruling me!! 

I feel great, better than before the op...although I did also have a parathyroid tumour also. 

You will be ok, if you are not sure about a TT discuss it with your surgeon. I'm sure though there must be a good reason for you to have a TT. But looking at some of the comments. You will feel great afterwards once your thyroxine levels are sorted and that all the nasty stuff is out. 

All the best X 

Hi

just came across your post while doing my own search for info.

how are you doing now?

I had a biopsy done on a nodule that came back thy5 cancer. This is the only nodule that showed up on the scan.

I had a Hemi Thyroidectomy done last week and thought it was all over as they had already told me that the ultrasound found no modules on the other side. 

The oncology nurse told me just before I left the hospital that I should prepare myself for the possibility of a second surgery. This has worried me now and I have another week to wait for my appointment.

does anyone know if it’s normal for them to come back and say they want to do a second surgery when there are no other nodules? They had been very clear that I wouldn’t need one at the pre-surgery appointment so I’m confused now that she told me to prepare that it may happen

any advice would be appreciated

thanks

Hi LD15,

It is completely normal for them to remove half and then the other half later, then sometimes followed up with Radioactive Iodine.

That's the path I took last year. The only difference between you and I was my FNA was THY4 so suspicious of malignancy. 

Some Drs now just remove half if the tumour is very small and encapsulated. However it's more difficult being monitored for recurrence. If it's all gone then catching recurrence is usually a lot easier.

PS I had no other nodules or any spread. They still wanted it all. I think they like collecting thyroids

All the best

Hello

Did the doctors ever describe your hemithyroidectomy as a 'diagnostic' hemi? Or did they lead you to believe that this would be the only surgery?

Normally with a Thy5 it's pretty clear that somebody does have cancer and so a total thyroidectomy used to be more typical for that FNA result. With Thy4 or Thy3f, half the thyroid is often removed because the FNA is inconclusive. That's then followed up - IF cancer is found - with a completion thyroidectomy.

What makes it hard for us to comment is that the 'norms' are changing a lot at the moment. 8 years ago when I was diagnosed, finding ANY cancer in the hemi meant the rest was almost always whipped out soon after. Now the hospitals are taking a more individualised approach, looking very carefully at the risks associated with the tumours that they find in the hemi, and then deciding whether to take the rest. In my case - for example - I had an enormous lump on one side of my thyroid and then nothing in the other half at all - BUT due to the nature of the lump they took in the hemi, they knew they'd want to give me RAI and so the other half had to go.

Some people do get annoyed that they have to go through surgery twice - but for every annoyed person there are many more whose hemis show no cancer and who get to live the rest of their lives with their remaining half thyroid and a lower dependency on synthetic thyroxine. (My sister is one of those - she had a hemi about 7 years ago and doesn't even take thyroxine)

The Thy5 suggests it's highly likely you had cancer in the half they took. The choice of whether they do the completion will depend on what they find in the detailed examination of the removed lumps. Until the tumour is sliced and diced and under a microscope, they just won't know. What they can see on an Ultrasound and find with an FNA needle is only ever part of the story.  It's like diagnosing what's wrong with your car but just listening to the engine - the analysis might change once they get under the bonnet and start taking parts out.

And the nurse who told you to prepare for further surgery will have known ABSOLUTELY nothing about what was in that lump at the time that she told you to prepare. So I'd say that was a very general, not-about-you-in-particular comment that she made. 

Thanks

the nurse rang me late yesterday afternoon and confirmed papillary thyroid cancer and that they wanted to remove the other half and this would be officially confirmed at my next appointment as the multi disciplinary meeting isn’t until Monday we’re they will sign off on it.

when the biopsy came back they told me it was definitely cancer because of the thy5 result that they thought it would be papillary but would confirm after it was removed they were really adamant that the need for a second surgery would be highly unlikely but here we are 

Hi barbaral

thanks for your reply. They never said it was diagnostic they already had the thy5 result. I think they thought because the tumor was 1.5cm that it would only be in the tumor and the rest of the gland would be clean.

i asked what the risk was of needing the second surgery would be as I wanted to weigh that risk against the need for medication and they said it was highly unlikely and risk was outweighed by benefit of being able to keep half the thyroid. 

im a single working parent so for me a second surgery is a disaster I’ve already taken two weeks off work and had my child passed around the family to get him minded. So for me the risk of more time off for treatment was not something I wanted to take a chance on.

Anyway I’m here now so I’ll just have to manage around it I’m just really upset that I wasn’t given more of a say in the original decision as my preference was the full Thyroidectomy first time so that I could get back to work and my son

Sorry barbaral

not sure if you saw my reply to previous person, the nurse rang back after my original post to confirm the second surgery would be done 

Hey there LD15,

I'm so sorry to hear that things haven't gone as expected.

Sadly, the Drs can give a best guess at things, but they can't give definitives until they actually get the lump out and have a look at it and the rest of the lobe properly. 

There are just too many variables that they can't see on an ultrasound or get from a FNA to be able to say one and done, before the one is done..... if that makes sense. Highly unlikely is accurate, but not a definitive it def won't need done, and it might be that whatever they've seen means that now the other half needs to come out too. Though I don't think you've been told that for definite either have you? Just that you might need the other half out? So it might not happen.

When is your appointment? I can't remember if you said or not.... sorry.

Lass

Xx

Hello again

I know it's a massive disappointment and it's always easy to say after the event that they should have whipped it all out in one go. But we can't turn the clock back and do it all over.

It's possible that when they looked at the lump under the microscope, there were signs that it might be a little less meek and mild than they'd expected or there might have been other tiny micro cancers in the rest of the thyroid half that made them realise that it would be better to take the precaution of getting it all out.

For me, it was easy -I just wanted ever last trace of my thyroid obliterated. But I didn't have to choose or worry over it as I was pretty much told there was no alternative. It's a great shame when you've prepared yourself for one outcome and then find there's more to deal with but in the long run if it minimises the risk of any further recurrence, those extra couple of weeks off work will feel like they were worth it.

Stay strong.

Hi again,

Remember you have the right to refuse to have the second surgery, but that's not something I'd recommend. I'd go with what they say.

You can always ask them about your concerns, and see if the second surgery needs to be done right away or could you defer it for a period of time. I was allowed to defer my RAI because my second son was due.

I was asked if I wanted to lose my whole thyroid in one go, I didn't have a clue and just asked my surgeon what should I do. He said lose half first till they know for sure, plus there's less chance of complications if they do half and then half later.

Please speak to your nurse though and you've always got Macmillan that you can call if needs be.

As for childcare, could someone temporarily move in and help you? Since you are working if you child is over 3 you may qualify for some free hours of childcare. 

Please don't worry about taking the medication, they seriously are the smallest pills I've ever seen and once you take them, that's all you need to do.

All the best

Chris