ShazziH, I really feel for you. I half don't want to tell you my experience because I don't want to make you feel worse but I think it's important. 
 

My nodules were found by chance last year. I had no symptoms and no visible lump. Following an ultrasound, I had an FNA in June which was Thy3f and although I was low risk in all areas, my referral was sent as urgent. My iffy nodule was less than 2cm so smaller than yours. I had a hemithyroidectomy in August and after a 6 week wait for results, I was told I had NIFTP (a kind of pre-cancer) and papillary micro carcinoma meaning no further surgery or treatment was needed. I'll just have my other nodule monitored. I so hope you have a good result at the end of this too - there's hope for that, I promise.
 

My nodules grew a tiny amount in 2 years (2mm) so the fact that yours has grown so quickly would be concerning to me. Can you ask the hospital to scan again as you know they've grown? The waiting was the hardest part and I can't imagine what you're going through. I was told prior to surgery that they knew for certain that the nodules were not the more aggressive forms of thyroid cancer. These would have been diagnosed by FNA so that was a comfort. The others apparently spread very slowly, if at all so I didn't feel like they were in a rush with me but my wait was nothing compared to the wait you've had. I'm so sorry you're having to deal with this. 

Mistakes were made with me too - I was told on 2 occasions that I had cancer and it was only through self research that I was able to challenge the diagnosis both times. It's unbelievable really. I think covid is impacting a lot but I'm not very far from you (in Leicestershire) and I can't understand how I was seen so much quicker. Please challenge it and if I can help in any way, please pop me a message. 
 

Wishing you all the luck in the world. Sophie x
 

Hi Sophie, 

Thabks so much for sharing your experience with me. I wonder if we're at the same hospital - I've been told the ENT dept there has had a few complaints about the length of time it takes to be treated. It's not reassuring. 
 

I asked ENT to scan me again but they said the best they can offer right now is a telephone consultation on the 19th Feb. I've been to the GP this week as I've had neck pain which I think is linked to the nodules growing. It's that growing/stretching discomfort you get in your belly when pregnant. Anyway, I have some painkillers. 
I've now noticed my heart rate has been spiking when asleep so am not sure if it's stress related or sleep apnea. Umming and ahhhing about if it would be beneficial to mention to gp. At this stage I feel a bit like a hypochondriac as I've spent a year worrying and there's been minimal progress. 
I stupidly read that the follicular varient can spread, albeit slowly.... that'll teach me for being silly and tootling over to Google won't it? 
 

All the best

S

Hi I've had a lump in my neck for 18 years, they said hashimitos with goitre back then.

Went to gp in November as I felt it had grown and was causing discomfort. I am also getting regular palpitations. 

I had an us but they couldn't get a sample for fna as it is rock solid. 16mm in size

Ct scan showed gap for needle so had another us this week where they think they've found enough cells to examine. Waiting on results now but really just want this lump removed. My thyroid is apparently shrivelled up and tiny so I'd like it removed too. 

Not sure if I will even be offered surgery.

The lump is calcified almost the whole way round. They did a fna 18 years ago and said it was just lymph node cells.

They say uts probably benign but that doesn't stop you worrying

Hi Sophie,

I bet you are getting a lot of messages here but you went through it and I hope you're doing well now!

My problem started in Nov 20 just before my 40th. I had a pain on the right side on my neck and felt a little lump there. Few weeks later the lump and pain were still there and I started to worry so I went to see GP. He thought I must've been going through some infection (no symptoms) and it was my lymph nodes up. So I was told to stay in bed. Oh, I had slight fever too.

I stayed in bed for 3 weeks but after a first week post initial GP appointment, the lummp had gone much bigger and now I could feel 3 so I was told I needed a scan. I was also told to check all my teeth for any infections which I didn't have anything wing with.

In Dec I had the scan before Xmas and was told these were not lymph nodes but my right thyroid. They could see a lot of giant cells and also small nodule on the left side which wasn't painful. I was told this could be Thyroiditis.

I went to see ENT privately  a week later and he examined me and said again this could be Thyroiditis but another scan was already ordered and a referral sent to the endocrinologist. I had another scan, a lot of bloods and FNA on 12/01/21

I was so scared of the biopsy to the point I cried as soon as I walked in. As you know the nidle didn't hurt but the scan with it was so painful as the lump really hurts even on touch so pressing on it was horrible.

Anyway, last Monday I was sent the results via e chart letter(!) that the results were indeterminate and that I need a surgery to remove right thyroid to test it further. I think there's 3 nodules each less than 1cm and they gave it Thy3a my My bloods are showing an inflammation too. I was devastated to say the least especially that they didn't even call me to tell me the news or explain anything.

I managed to speak to the endocrinologist and she told me all I already heard from her on the biopsy day, all the good statistics etc , but confirmed that the surgery is the only option and they put a referral as cancer so it would be processed quicker even though it probably isn't.

I saw a private surgeon yesterday who funny enough knew my case because he was at the MTD meeting where they discussed me at the hospital where he also works. After a lot of chats and camera down my nose he agreed that this could be Thyroiditis (but very unlikely) so I'll be taking ibuprofen for one week and than steroids for 5 days. At the beginning he thought my pain which is radiating to the jaw, ear, collar bone, back of the neck and head, that all that is only muscular until he examined me. So that makes me think that none has ever listen to me when I was telling them about my symptoms. From the beginning it looked like Dr Queveira's and I could've been treated with steroids. So he'll try now but not for long enough in my opinion. They are convinced that the surgery is needed also because I was possibly exposed to radiation as child. Possibly I have Thyroiditis but also nodules. Now I have an ENT pre op consultation at the NHS hospital in a week, and in two weeks follow up at the private hospital to see if steroids made any change.

I have been so scared in those last 3 months and have been to some dark places and this week, after I found the letter I've been in pieces. I feel a little better today after that consultation but reading all comments here I'm getting anxious that perhaps I'm wasting the time in testing steroids. Honestly, turned 40 and went straight to 70!

They told me the same - probably benign and that wasn't the case. Every case is different though.

You're nodule is small so that's a positive - is it just the 1 nodule and did they say which side it's on?

Its my left side, they said originally it was a multinodular goitre but I'm not sure now that they believe my first diagnosis is accurate. Seems like just one. 

Heavily calcified and I understand thats not an issue its the pattern of the calcification. Mine is smooth and apparently thats a good sign.  

I thought they would just remove it as its causing my discomfort now. I was told the results should take a week so I'm hoping to hear them next week and what the plan of action is. 

Not sure if there are any other symptoms if it is malignant? I get palpitations more often than I usually would. I've got a sensation of needing to clear my throat but that can just be thyroiditis. 

I've taken next week off work cause I know I won't be able to concentrate for the worry x

I had no real symptoms - looking back I felt like I need to clear my throat. My blood work was totally normal. Sometimes symptoms could mean you can have either hypo or hyper thyroidism which I think is a positive. I read somewhere that normal blood work is often the case in thyroid cancer cases.

I've been treated for underactive for the last 20 years. I'm full of autoimmune conditions, body just likes attacking itself! 

Alopecia universalis and hypermobility to go along with my autoimmune thyroiditis

X

Hi Sophie, I feel your pain.

My nightmare started at the beggining of this year, with neck and ear pain. I thought my body is fighting with some virus, but it did not want to get better. I started to feel suspicious, so I searched on lymph nodes and I figured out it is not my lymph node, it's my thyroid. Some more research, found thyroid cancer, got really scared (have an 8 months old baby), so went to gp.

He said it must be lymph node, but if in a week it does not get better, he sends me to scan. I went private, the first private doctor said it's stress related. I was very puzzled, and asked him is it not my thyroid by any chance? He send me for a scan, next day I managed to book a scan, the doctor who scanned me said I need a biopsy.

Very lucky, next day they did a fine needle aspiration, i was terrified, they had to poke me 3 times, the 3rd was very painful. I was shocked after and shaking. I was so upset. The first doctor after a few days sent a letter that he will pass me on to an other doctor who is thyroid specialist, so I will have to discuss the results with the new doctor.

That's what happened today after a week. It was meant ot be a phone consultation, the doctor called me and asked me to get to the hospital now, he will explain everything. You can imagine what went through my head on the way there, I was trying to guess how much time I have left, what I will hear. He showed me my scans, he explained what u4 thyroid gland category means (that's the category I got, and said it looks very suspicious, but my result came back as negative, so they need a larger piece of my thyroid to make sure it is or it is not cancer.

So they booked me in for a CORE NEEDLE ASPIRATION which is with a larger needle, with local anasthetic. I am very upset, very scared, terrified. Athough the doctor told me that thyroid cancer is well treatable, survival chances are very high. But still, I look at my small kids and my heart is totally broken, I need to see them growing up. I just turned to 41! I am so so scared.

Let me konw how your story goes, I hope you will be better. All my prayers are with you. Fingers and everything is crossed.