Total or partial removal? Advice please

[StaffyMam]

Hi,

I have several lesions scattered on my thyroid but the two in question are 3.8cm (right side) and 1.1cm (left side) complex lesions which have been classified as U2 by an ultrasound but no biopsies have been offered.

I have been informed my bloods are normal but not been given the results. I have still opted for removal due to the discomfort in my neck and I am not totally convinced all of my symptoms are due to menopause however, my endocrinologist was happy to leave things as they are without further investigation of the lesions.

I am now under the care of the ENT surgeon who seems very pushy about only removing the right hand side with the largest lesion and still not do any further tests on the lesion on the left. None of this feels right to me and I have still said I would prefer a total removal but I would love other people's advice on this who may have been through similar.

I appreciate that only removing half may be a safer procedure with fewer risks and there is a high chance (80% according to the surgeon) that I won't need medication however, I can't help but feel I have been given mixed messages from the two consultants and the surgeon has a hidden agenda for only wanting to remove half (NHS finances maybe?)

Any advice would be greatly appreciated thank you

[PurpleNails Administrator]

what are your results?

Do you have copies of test results & scan reports?

Your results might be in range but not optimal. There can be other errors too. I was told my results were normal, no further action & it turned out the thyroid tests were processed. No one noticed for months, they were abnormal / overactive.

A struggling thyroid can be in range but swell to cause symtoms. So it’s important to check this.

[StaffyMam in reply to PurpleNails]

I have my scan report which says, USG showed right side complex lesion with cystic components 3.7 *3.8cm U2 nodule and left side 11cm U2 nodules. I was initially discharged after this scan with no further action required and insisted on being re-referred by my GP.

I have a TSH reading of 1.18 from earlier in the year but no other results. Maybe I should request those tomorrow however, my main concern is that I feel I am being manipulated to opt for a half-removal over total, with additional risks being thrown in each time I suggest I would prefer it all removed.

[PurpleNails Administrator in reply to StaffyMam]

Post results when you have them. Arrange full private test if testing not complete.

Surgeons will strive to preserve function if possible & likely automatically assume patients would also prefer this approach.

Medics view hypothyroidism as easily treatable, I don’t believe it’s to save the potential cost of replacement.

Discuss your concerns with doctor & explain how your worry of further surgery is a greater fear for you, than managing hypothyroidism. Doctors must take into account your wishes. They may try to persuade your thinking (reassure you) why they suggest the approach they have.

[StaffyMam in reply to PurpleNails]

I will do and thank you for your advice.

[StaffyMam in reply to StaffyMam]

Hi my results from September are as follows:

TSH 2.36

FT4 15

FT3 4.3

AntiTPO less than 28 - negative

This is all new to me and I have no idea what it means, any advice would be greatly appreciated, thank you.

[Insomania]

I have multi-nodular goitre, I don’t know if that’s the same as what you have, the main thing is cancer is ruled out.

The only option from ENT was surgical removal. No medication or supplements can help. To the NHS, my thyroid bloods were within normal range.

I knew I didn’t want surgery unless it was last resort. I had LOADS of hypothyroid symptoms and could not get treatment from NHS.

I went private and have been on NDT Armour for 16 months with recommended supplements (which does include some selenium and iodine) and my goitre is noticeably smaller. Not just me noticing, friends and family too. I did not expect this!

I’m still not quite at optimum but getting there.

[Hedgeree]

Hi StaffyMam,

I also have a multinodular goitre and had the right side of my thyroid removed due to a large nodule (3cm+) But they did do two fine needle biopsy (FNB) on it before as I was told it looked suspicious. So you've not had a biopsy on your nodule?

From my own experience and reading this forum daily, I would want to keep as much of my thyroid gland as possible. There are a number of members that have had full thyroidectomies so hopefully they will see your post and reply.

Also having nodules are a fairly common thing as we age and my understanding is that many people have them.

I was also told I probably wouldn't need to be on thyroid hormones but I did as the remaining part of my thyroid didn't compensate so I was prescribed Levothyoxine a few weeks post op in 2022. I'm still titrating up my levo as I struggled to tolerate it initially and had to start very slowly.

Initially I didn't want surgery at all but wanted to have ablation on my nodule. But I was told I wasn't suitable for that procedure as my nodule had suspicious cells. Maybe you could explore having ablation instead?

As others have said you need to get your blood test results and their ranges before making any decisions. Post them for others to comment.

[StaffyMam in reply to Hedgeree]

Thank you so much for your reply Hedgeree and for sharing your experience. I have been told ablation is not available to me therefore, at least a half removal is necessary, considering the discomfort I have from the large nodule. I am concerned about leaving half in, knowing there is an 11mm nodule which won't be tested and a number of smaller ones. My surgeon assures me if the biopsy from what they remove is benign then what is left will also be benign but could I be certain this is true and could cancer not develop at a later date?

I feel the ENT surgeon answers my questions in a way that sways my judgment towards his preference and dismisses my concerns.

[Hedgeree in reply to StaffyMam]

Hi StaffyMam,

It is difficult to decide what to do; I got in a right state as I didn't want surgery at all. But I was very hypothyroid and had been for some years though my GP kept telling me there was nothing wrong with my thyroid. It took a number of years before I actually got an endo referral. Also at that point I didn't know that I had a 3cm + nodule! that was found after I'd been referred to ENT!

Depending on your blood test results has anyone discussed you having a trial of levothyroxine? I was originally hoping to be prescribed Levo to see if it would help my nodule reduce in size but it having suspicious cells made me decide to go ahead and have surgery.

I felt very confident in my ENT surgeon and clinic they were brilliant. The endo clinic wasn't so great and caused me much distress, cancelling my appointment two days before my actual operation wasn't very helpful (understatement!)

Have you looked at the British Association of Endocrine and Thyroid surgeons (BAETS) website?

baets.org.uk/patients/

[StaffyMam in reply to Hedgeree]

Oh no I haven't but I will do thank you. No I've not been offered meds. My endo Doc says either leaving it as it is or surgery are my only options but I already knew I wanted the large nodule removed at least however, my ENT surgeon is now really trying to sway me to a partial removal and giving conflicting advice, adding additional risks he never mentioned in my first appointment now that I've said I would prefer to have it fully removed.