Thyroid swelling? What next?

[BlackInk]

S'cuse the horrific up-the-nostril angle and my ugly mug, but this is a terrible photo of what I think might be a swollen thyroid. By some miracle I've got a face-to-face GP appointment this afternoon, but I'm just wondering if anyone could tell me what should happen next.

The swelling is soft, moves when I swallow and not painful, although I can feel it. It doesn't show up well in the picture but is probably about the size of a large, flattened grape.

I've been not right for a few years with lots of symptoms and 'off' test results, but have got nowhere with diagnosis/treatment.

I've had TSH tested recently and a few years ago – right at the bottom of normal range both times and no further action. I've also got B12 deficiency (12-weekly injections), early menopause, low morning cortisol (normal SST), mild iron deficiency, positive ANA, low C4, early onset arthritis and had a pretty scary allergic reaction to CT scan dye (iodine) recently.

Symptoms are too many to list but possibly relevant ones are:
Exhaustion beyond belief
Unexplained weight loss
Palpitations
Head pressure and dizziness
Discomfort when swallowing and frequent urge to swallow
Waking at night gagging
Nausea and stomach pain/discomfort
Anxiety

I'm a bit worried, but also hopeful that this might actually be what's wrong and fixable! GPs have been so dismissive and just think I'm anxious/a hypochondriac. I've had so many abnormal test results but when whatever follow-up they do comes back normal it's back to square one!

Any experience, advice very welcome :)

Hi @Decaffe The whole goitre/thyroid nodule thing is confusing. Mine has never been described as a goitre, not sure whether that's because, like you, my TSH is in range (albeit right at bottom of range). I was referred immediately on the 2-week pathway when I went to my GP having noticed a small lump at the bottom of my neck. Do you have any symptoms either from the lump itself (pain, voice changes, trouble swallowing/breathing) or that could be related to issues with your thyroid hormones (weight loss /gain, tiredness...). My GP has refused to do further testing of my thyroid hormones because my TSH is in range.
I've been referred for another ultrasound because my lump has grown fast and seems to be causing some symptoms.
I would go back to your GP if I were you and tell them about any symptoms and ask to be referred to ENT for a scan.
This NHS link says "Further tests, such as an ultrasound scan, will be needed if the test shows that your thyroid hormone levels are normal.":
www.nhs.uk/conditions/thyroid-cancer/diagnosis/

Hi BlackInk Im so sorry for late reply. How have you been? Any more news? I had a weeks course of antibiotics (doubt its worked) Not heard from the doctors since Gastroscopy. So I will try and follow up in a few weeks. Still a pain to eat, food is usually slow going down, they will blame that on the infection more than nodules.

I do not know either, I did have a nose at the notes when I had a smear test and it said thyroid nodules and the lady who did the ultrasound said my thyroid was big?.

Hi,

I was diagnosed with an underactive thyroid last January after struggling to get back on my feet after having Covid. I’ve always wondered if my thyroid was a bit swollen but thought I was just being anxious. Anyway the last couple of weeks or so I’ve felt really uncomfortable wearing clothes with tight’ish necks and felt like I’ve got something stuck in my throat. I went to see an advanced nurse practitioner at my doctor’s surgery today and he’s referring me for an ultrasound and mentioned the word goitre. I’m not sure if it’s an urgent referral or not so no idea how long I’ll have to wait. I’m a bit worried now 🥺 xx

Hi wombatbum, I know you will feel really scared, I was too when I first was referred but it's most likely just clear cysts nodules. I've read so much on it, and spoke to the ent doctor who said most of us have them with out knowing. I have them and I have the same problem tightness around neck too. I'm hoping they remove them because it's a struggle to breath when I'm sat down and food takes ages to go down. They will do an ultrasound and hopefully they will tell you as they scan your thyroid what's going on (mine did). You might have to have a camera down nose but i didn't feel it and it wasn't as traumatic as the endoscopy. You might be over or underactive but I've not got either, just nodules. Try not to google actually best coming on here because you will see most have just benign lumps.

Sorry just seen you was diagnosed as underactive, it's even more common to have a goitre or nodules. Maybe you have gone over active?. They always will scan thyroid. Good luck.

Hi @Jodie569 Sorry for the long pause, feeling pretty disheartened with it all. Latest scan showed that my nodules have only grown a few mm and still look benign, so I've been discharged. They have referred me back to speech therapy due to issues with my voice but still telling me it's definitely not related. How are you?

Hey black ink, same here because my endoscopy came back clear apart from bacteria, I’ve been told nothing else unless it grows. It really is bloody frustrating isn’t it! I’m actually looking into going private now because they aren’t going to help. Gutted for you!.

Hey black ink- hope all is well? Have you seen online about putting caster oil on your neck with a wrap? It's meant to shrink nodules! I've just brought it all online! I hope it works! Lots have said theirs have shrunk or disappeared after a few weeks of using it. Google it :)

Hi black ink I really hope you are still on here, I have some good news and you may be able to have this done too

Hi @Jodie782 yes I'm still here! How are you?

I’m good thank you (still suffering with nodules). I have just been referred to hospital for a new procedure here they shrink the nodules, my local hospital and a couple up north are the only ones who are offering this on NHS. It’s called microwave ablation. If you’re still in the same position ask your doctor to refer you, this is what I did. I hope you’re well. X

Ohh that sounds promising - I'm glad you're getting somewhere!

I managed to get a second opinion about a month ago and the consultant was happy to aspirate/drain my largest nodule (because it was causing compressive symptoms). I can still see a slight lump and still sometimes choke a bit at night but definitely feels more comfortable. They sent the fluid off to the lab for testing and I'm still waiting for results, but the consultant was confident that it looks benign. He did say there's a good chance (about 50/50) that it will grow back, and if it does we can consider surgery or just aspirate again.

Sometimes it does pay not to give up!

Glad you're doing well x

Sorry for late reply. I am glad to hear you managed to get a second opinion, If It comes back benign you should be given the option to have this done too. Google Queen Alexander Hospital Portsmouth, there is an article about it all. I hope yours do not grow back and is benign. Good luck BlackInk, If I have this done I will message you again and please keep me updated if you can.