Thyroid growing back???

[Ginger82]

Hi all, I had a total thyroidectomy when I was 14 back in 1996. A month ago I have noticed a lump in my left side of my neck. Had an urgent referral to ENT and was told it could be my thyroid growing back!!!!!!!! However I'm to have a biopsy to check for anything else. In 23 years I have never had a problem.... Has any one else had this or heard of it!!! I'm at a complete loss!!!! Many thanks!!!! X

[helvella Administrator Thyroid UK]

I don't have any figures for how often it occurs, but it is well-known that a thyroid can grow back after a thyroidectomy. And if can take many years to happen.

The re-grown thyroid might have next to no ability to function as a thyroid.

Adding this link - if you read it, you will find further references to follow up.

ncbi.nlm.nih.gov/pmc/articl...

[MaisieGray]

I've also read that nodules can grow on the thyroid bed too.

[recovered7]

HiGinger82, mine grew back. I had Radioactive Iodine to kill it off about 14 years ago, and discovered last year by default that it had grown back. My New Dr didn't belive me when i said i didn't have a Thyroid, ( he did when i showed him the letter from my Endo stating the Radi/A/Iodine i had ) so he sent me for a Ct scan and it came back saying that i certainly did have a Thyroid, and it had a nodule on it, imagine my shock. My Endo has told me that this does happen some times, so have just kept on with my medication for an underactive Thyroid because it isn't functioning. Hope this helps clear up the Mystery for you.

[Celestialbeing in reply to recovered7]

I thought that after RAI, the thyroid is killed but remains in the body. That would mean that it is present on image tests.

[recovered7 in reply to Celestialbeing]

its confusing isn't it ? i don't understand either

[Celestialbeing in reply to recovered7]

While researching the topic, i read that the RAI can destroy the ability of the thyroid to function but the thyroid remains there. However, it might shrink in size. Yes confusing :/

[dgleds]

Thyroids can do weird stuff..I never had a thyroidectomy, but my Doctor thought mine was coming back to life there for a while (that doesnt happen), but after being on 100mcg of synthroid forever, suddenly i only needed to be on 25mcg...Things after that bounced around for a while, and Im just hypothyroid...I think menopause played a hand in it...

[susiebow in reply to dgleds]

Hi dgleds, Can I ask what your symptoms were ?I was on 150 tyrosine now on 112.5 and ts h very low.Do not understand why I suddenly need less.

[dgleds in reply to susiebow]

Its been a while, but Doctor kept checking me every few months and chasing my thyroid around, and adjusting my meds. I think later on i was pretty stiff and had muscle aches, and some odd symptoms(even my hearing in one ear was acting up)...They even at one point thought mild lupus. No one ever checked my blood pressure for some reason, and i did in a grocery store (they had a cuff), and it was high my BP (that can make your ears ring too)...Just all kind of odd things were happening...I still think menopause was the cause, and tossed my body into a flap. My hair has gotten thin on my head, and my under arm hair is pretty much nil, and the front of my legs and side of legs not much hair either, oh and my eyebrows have thinned out too..

[Tanya-B]

My thyroid has grown back. I had a partial thyroidectomy 37 years ago. They left approximately an eight of my thyroid which was common practice then. I have Graves' disease. My antibodies attacked the tiny little bit of my thyroid left and the thyroid is attacked it can regrow. It can take between 20-30 years to grow back .

I was being overmedicated for years as as my thyroid grew it was producing thyroxine. I felt very ill for many years and my GP more or less dismissed it. I kept telling him I was thyrotoxic but he didn't listen so I stopped going to see him.

I was so breathless for so many years. I experienced respitory failure on a plane to France. Thank goodness my husband is French because he pleaded with the French hospital to investigate what was making me so ill. They discovered what was wrong. I phoned my GP from France to tell him and he said it was impossible for the thyroid to grow back.

I arranged to see a endrocronologist privately when I returnec home, Dr Toft in Edinburgh. He was amazing and explained that although rare it can grow back but takes many years.

In all fairness to my GP he couldn't possibly have known because it is very rare.

I have learned so much from this site and from Dr Toft and have taken full control of my health. Knowledge is power so find out everything you can in order to help yourself.

All the very best to you

Tanya

[annnsandell]

First of all why did you have a thyroidectomy? I had a thyroidectomy 10 years ago for a goitre that turned out to be cancerous. My TSH is kept suppressed to stop regrowth and every year the surgeon checks my neck to see if there are any signs of regrowth. I have read various information that talks about regrowth and other affects to look out for like saliva glands misbehaving. This brings me back to the first question. Not sure an ENT consultant is the right person but they are investigating. Good luck.

[Ginger82 in reply to annnsandell]

I had a goiter too at the age of 13. From what I remember the thyroid just stopped working, so the whole thing was removed and I've been on thyroxine ever since... Between 100mg-150mg . Never really been educated on it just have a blood test once a year!!!! 🙄

[annnsandell in reply to Ginger82]

Have you got your test results. Might be worth checking your TSH level. I guess in your case there is no problem in it re-growing unless it is uncomfortable and there is a possibility that it will grow into a goitre again. Have they said what they are testing for, is it a needle? Any scans? As far as I know your body will regrow a thyroid if it doesn't have enough thyroxine or there are pieces of tissue left.

In the case of thyroid cancer they keep the TSH suppressed and give radium treatment to get rid of any thyroid cells but in that case it is important that it doesn't regrow whereas yours was different.

[Ginger82 in reply to annnsandell]

My last test results were apparently fine.... I had x-rays.... Ultra sounds and now booked in for the biopsy on thursday which I'm told is a needle test.

I'm having trouble swallowing and sleeping... So fingers crossed it's just growing back!!!

Thank you for replying back... I really have no clue about it all... I think at the time my mum just brought me up not to dwell on it and just take my medication!!! I'm always tired, always cold. Only got told recently that these were typical effects of taking thyroxine!! X

[JOLLYDOLLY]

This is a new one to me Ginger82 Never heard of it before and very surprised if this does happen, albeit it rare.

I was born with only a partial none working thyroid, so been on meds all my life. I wish mine had grown, perhaps I would not have the problems I have experienced in the past.

All the best

[greenhills]

I had a total thyroidectomy aged 11 in 1965. My throat was always flat and normal looking after that, until about 9 years ago when a swelling at the front of my neck appeared and has remained. It causes puckering when swallow and have recently been checked over in ENT at a big hospital. They have said it is scar tissue and its adhered to the windpipe, hence the whole structure moves when I swallow. My thyroid was removed from my throat at operation because I seem to remember it being offered to me in a jar! But, like others I have questioned if it can grow back. I couldnt understand why I'd get scar tissue 40 years after the op. Interesting stuff though.

[MrsBargirl]

Mine grew back too!! I had a total thyroidectomy 12 yes ago, my vocal chord was paralysed. I had it removed again in March last year, surgeon was reluctant to do so because of the vocal chord. Was on 75mcg thyroxine until earlier this year, now on 175mcg. Until the 2nd removal my weight was steady at around 9.5 to 10 stone, now I've put on weight I cant shift despite no changes in my diet and I'm almost back to full time work.

I love peoples reaction when you say it grew back!! I've been told that if I get my tonsils out (been having bother with them) that they too could regrow!

We are just special 😊