Thyroid nodules? Anyone had them / had them removed, i really want mine removed

[TempUserNameForToday]

I've nc as I'm embarrassed. I've had thyroid nodules for 20 years and have check ups every 2 years with an endocrinologist. I have them scanned every couple years too (last time was April) and they are benign. I have normal thyroid function so no need for any kind of thyroid medication. Endo also said I don't need an operation because of normal thyroid function and because it is a benign condition

However Over the years they've slowly grown and now I feel its noticeable ....I notice it every day and I just feel like I look an absolute freak 😢 as if it's not bad enough I'm 40 and starting to get a wrinkly neck anyway now I've got a lumpy one 🤦‍♀️

I have my next appointment with the endo clinic in December. And I want to ask for them to be sorted as it's impacting on my life and making me really down and anxious. If it helps there's a family history of this exact same thing my mum and 3 aunts all had an op in their 30s/40s

Ideally I don't want an op if it's unnecessary... but I've read online there are other options such as you can have them injected with ethyl alcohol or drained. So has anyone had the same and managed to get treated ?

Help 😢

Anyone ?

My consultant refused to do anything with mine while my thyroid was functioning normally/borderline overactive, and said it wasn't as simple as draining to reduce its size (which I'd been hoping for when I went for my initial consultation!).
I've since gone overactive and had radioactive iodine treatment to kill off part of my thyroid, which has reduced the goitre in size but it's not gone completely. My friend had part of her thyroid removed and the goitre went completely. I think it depends on what is causing the goitre as to what treatment is best - mine were multi nodules so RAI targets them better than surgery.

@SchoolNightWine thank you for replying

Mine are multinodular too. But so far my thyroid is functioning normally. Which is good but also not good as I don't want this swollen neck I am depressed every day about it 😢

I have heard of the radioactive iodine treatment.

Also has anyone heard of taking iodine to reduce the size of nodules ? Looking online it seems a lot of people have had good results from that

I'm in my 40's and I was a bit down for a while about this lump on my neck too, but have managed to get over that a bit now.
Hope someone else comes along with other experiences of this to discuss with you.

@SchoolNightWine

I actually can't deal with the idea that they'd leave me like this

I'm actually sat in the loos at work crying my eyes out over the thought of it. I hate how it looks. I know I'm probably a fucking shallow idiot but I hate it so much

Roll on December for my consultant appointment. and fingers crossed I go overactive so they'll do something and I hope some other posters have had a more positive experience 😢

Not helpful, but others probably don't even notice it unless you point it out.
Sorry that it's making you so upset though, and also having had it so long - I only got mine 3 years ago. I went through a period of wearing scarves to hide it as it made me feel so much older than I am, and asked my endo at every appt if he was sure he couldn't just aspirate it!
Hating one part of your body can affect how you feel about everything, and this is frustrating because you personally can't do anything about it (like exercising to tone a flabby tummy).
My attitude towards mine changed when a very young family member got a cancer diagnosis. Put my lump into perspective.

Definitely tell your endo how it's affecting you mentally, as they see these every day and often on much older patients, and I guess they are just happy that it's benign and your levels are normal. It is now affecting another part of your health though, and you probably need to stress that to them.

@SchoolNightWine oh I'm sorry to hear about your family member cancer is such a bloody cruel disease. I hope they make a full recovery.

You're right it does put it into perspective. I remember when I first found the thyroid lump I was terrified it was something bad and so relived when it wasn't. Mine has grown very slowly, it's only been noticeable for a couple years too. I really hope others don't notice it but it really does knock my confidence. I'm actually not bad looking for my age 😳 and feel like it ruins it. Like you say a lot of things physically are fixable ie if you want to lose weight it's doable or even fix wrinkles you can have Botox etc

It actually didn't bother me much til recently as you can't really tell from the front. But at the hairdressers they showed me the back and side of my hair and I saw how my neck sticks out and I just thought OMG did not realise so now I'm super paranoid 😢

Sorry to go on and thanks for chatting on here with me 💐

I have them as well and have had them for years. Doctors always used to say to me ooh you have a swollen neck but never did anything about it. Wasn’t diagnosed until I came to the US, the land of the over testing. I have one that is 3cm and then smaller ones. Ent has said he might take out the side with the 3cm only. I also have normal thyroid function. I do have other things going on like extremely low b12 and low Ferritin and constantly knackered, I’m wondering about seeing an endocrinologist and seeing if they can put the whole picture together and work out what’s wrong with me.

Anyhoo, my GP suggested I did some reading around gluten and the thyroid, she wasn’t advising gluten free, just read up about it as there seems to be a link.

Such a shame that one incident has made you feel so bad. Hair salon mirrors can be brutal! I still really doubt it's noticeable to others, but understand that it'll feel/look big to you.

I have a large one on the left side of my neck. I'm 38 and I've had it for last three and a half years or so. I've had it scanned and bi-opsied several times, and while the biopsies haven't ever confirmed 100% that it is benign (not clear enough to read), i've been told that the scans show it as benign and pretty much rule out any suspiciousness.

I'm quite conscious of mine as it's quite large (4cm or so) and I can definitely feel it/see it.

Last year I found out about a new treatment for benign nodules called radiofrequency ablation - not all NHS hospitals offer it but I was referred by my GP to a hospital that does. I was seen by a lovely consultant and was very excited by the prospect of getting shot of the nodule but unfortunately I didn't qualify because the nodule has to be 100% certified benign via biopsy and they've never managed to get that reading for me. Really frustrating because I'm constantly reassured that it is benign but that because it's very cystic and full of gunk (sorry, TMI), its really hard to get a clear reading - very common with nodule biopsies. It might be worth checking out though?

@HerRoyalNotness

Thank you for your reply and sorry to hear about your general knackeredness . I would deffo go and see an endocrinologist....hope they can get to the bottom of it. Do you think you'll have your module removed? I'm not 100% sure what size mine is but I know one side is slightly bigger than the other.

And very Interesting re the gluten link. I'm going to look into that. Thank you again.

@dolster

My large side is on the left too, interesting! I think someone else said the same.

Radio frequency ablation sounds promising ...I've had a needle biopsy mine came back clear. But that was about 5 years ago so I would prob have to have another one although scans have showed benign. I will ask my endocrinologist about that. What a shame that they can't offer that to you ...are you going to have yours removed surgically at any point?

@SchoolNightWine thank you again for being so kind. Hairdresser mirrors are awful 🤦‍♀️. I think I need to stop obsessing so much as the more I do the more I notice it if that makes sense 🤔

(As an aside, your name makes me really fancy treating myself to a glass of wine this evening 🍷 😂)

I'm like that most evenings, hence the name

@SchoolNightWine 😁😁

Also I just wanted to ask what is the radiation treatment like? It sounds scary. I've been reading online is it correct that when people have it they have to be isolated for days as it makes you radioactive 😱

@TempUserNameForToday
Yes you are radioactive so have to keep some distance for 2/3 weeks. I had to move out for the first week as you can't sleep in the same bed as your partner, and I also wanted to minimise contact with my kids as much as I could in the first few days when you're most radioactive. I then had to keep a metre away from kids over 5 (both mine are) and pets for a further week and kids under 5 and pregnant women for the 3rd week.
I hated being apart from my family, and cried a lot the few days before my treatment, but in reality, it was over pretty quick and I wasn't ill with it - just my overactive symptoms peaked, so anxiety, couldn't sleep and was beyond tired.
Don't know if it's worked yet as just had my first blood test since treatment today.

@SchoolNightWine

Thank you for explaining. Wow that sounds awful. It must have been so hard for you and your family. 😢. Daft question but if the radiation makes it necessary to keep away from others is it not dangerous for the person receiving it?

I did ask my consultant that (more than once) before agreeing to the treatment and she assured me that I was at no increased risk of cancer from having this treatment. This is what I was most anxious about the few days before and after treatment though, and also kept thinking I'm sitting here in the middle of this radiation that I've got to keep others away from - scary at the time.
But my husband is a chemist and I have friends in the nuclear industry who know a lot more about radiation than I do, and they put my mind at rest about the dose I had taken. I have to move on and not think about it now.

I really don't want to have mine surgically removed - I hate the idea of developing thyroid problems (my thyroid functions fine). I would rather have the lump at the moment! I'm also holding out hope that one day I will be able to have the radiofrequency ablation, it's just a case of having to go through more FNAs which I don't really fancy right now. Having the lump is not an ideal situation but it's just about bearable!

I had a tiny thyroid nodule and it was cancer .

I have lifelong issues due to the treatment and surgery to treat the cancer .

I wish I had a lumpy neck .... it would be preferable to what I have to deal with for the rest of my life

@PanBanisha

I really am sorry to hear that and it really does put things in perspective.

💐 for you

@SchoolNightWine

Oh I didn't want to imply I didn't think it was safe or anything I just wondered. Sorry if I came across like that. I'm sure it's totally safe as they do loads of them it seems a very common treatment. And if it wasn't safe they wouldn't be able to do it. It's good your H is a chemist and you know people in that field who've been able to reassure you 💐

@dolster

Let's hope so ! fingers crossed 🤞🏻

I don't blame you not wanting to have any more needle biopsy's...when I had mine it was so uncomfortable ☹️.

I've been reading into that treatment it does sound really good so I'm definitely going to ask my consultant about it.