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 :)

From memory the next stages are an ultrasound and a fine needle biopsy (which hurts like fuck) to see if there's anything sinister going on.

A lot of your symptoms could be linked to the anxiety but the exhaustion and weight loss are likely to be linked to the thyroid. Mine wasn't cancerous but the nodules were growing quickly; I was supposed to have a full thyroidectomy but ended up with them only removing half as they severed a vocal cord during the op. 🙄

Thank you @Eyesopenwideawake I think my biggest fear at this stage is the GP saying 'Ah that's nothing' and sending me on my way. Are you fully recovered?

I would ask the gp for a full thyroid blood test, that's means TSH, T4 and T3. Then if anything is abnormal they should refer you to an endocrinologist. Your symptoms might indicate that you are hyper ( overactive thyroid). The swelling of the thyroid might be a goiter and they will usually take an ultrasound of that.

Good luck

Thanks @Suzi7979 I did ask GP about a full thyroid screen but he said they didn't do it unless TSH is out of range. I hadn't noticed the swelling at that point though.

Seen GP and been referred for a scan on the 2 week pathway! Although dr said as my TSH is normal whatever it is is likely to be inactive….

If you’re like me you’ll be sent firstly for ultrasound and if that’s inconclusive or if they’re concerned they’ll do a fine needle biopsy which I didn’t find painful at all so please don’t worry unnecessarily.

They may then send you for a CT scan to check the area and if that’s clear (probably will be) you might have a partial thyroidectomy which was day surgery for me.

Honestly the waiting is the worst part. I know everyone says it but it’s true. Hope you get answers soon, OP. 💐

Thank you @Mollymoofer I'm not toooooo worried, actually hopeful that this might explain my symptoms and something can be done to make me feel less awful! The swelling looks bigger today, which is a bit alarming...

Hi Blackink, I am actually going through exactly same as you. For years I have been to the doctors and sent away saying I was depressed, I noticed in 2017 that I had restricted breathing when I laid down. It hasn't got worse but It's annoying. TSH always in range (they do not do any tests) About 3 weeks ago I noticed the lump (think mine is bigger than yours as its grown lower). Doc has referred me to ultra sound next week. I have ordered thyroid test from medicheck and mine have come back all normal apart from my t4 is 24 (way above range). I will keep eye on your thread and I hope it nothing serious.

Make sure they check your calcium for a parathyroid mass. That can also make you feel pretty weird and crazy too

@Jodie569 Sorry to hear you're going through this too. I've been going to GP on and off for a few years with multiple symptoms to the point I'm barely able to function now. I've been dismissed over and over and had anxiety meds pushed on me numerous times. My breathing feels fine, but swallowing feels kind of hard work and I keep waking in the night gagging/choking – GP said both these things were anxiety.
I ordered full thyroid test (TSH, T3, T4) from Monitor My Health just before I noticed the swelling. Waiting for the kit to arrive, and also for scan appointment. What day's your scan? Please do update me.

@shedwithivy I think my calcium has been checked a couple of times over the years but I'll see if I can find the result. Certainly not flagged as abnormal. Thank you.

Sounds just like me, my heart beat is up to 80’s up and down but that could be the anxiety thanks to the doctors. I have my scan Tuesday morning, im terrified but at the same time I am completely fed up with living like this. Hopefully we will both know what is going soon. Is the test a finger prick one?. I had my results back with in a day. Good luck. If you need a chat you can pm me. X

@Jodie569 Yes, it's a finger prick test but still waiting for it to arrive, thanks to postal strikes I think. I hope all goes well tomorrow. Please do let me know how you get on. I'm hoping to receive a date for my ultrasound today...

Hi blackInk thank you. I hated doing the finger prick but once you done it, it’s not too bad but build up to it wasn’t pleasant lol.

my tests came back TSH lower but still in range I had a higher t4 and low t3- it says on the t4 that I’m overactive which explains the horrendous symptoms right now. My heart is racing constantly and no sleep. Not sure if I had Graves’ disease but my eyes do look a bit bulkier and they hurt (prob from lack of sleep and meant to wear glasses).

i will let you know tomorrow. I hope you have been okay? X

Finger prick test done and back in the post – quite messy!

My TSH is also in range, but lower end of normal. I've read that TSH, T3 and T4 are usually normal with thyroid cancer, so hopefully your raised T4 means hyperthyroid... not that you want that, but at least it would explain your symptoms and hopefully lead to medication that will help you feel better.

Glad you done it & sent off. Hopefully you will know by Weds.

i emailed my doctor this morning to say I was struggling to sleep, heart is racing and that is had my private results and they say I’m over active- she emailed back saying it’s all normal just to take more propanol 🤦🏽‍♀️ (I don’t know how it’s spelt).

i am worried that this has been growing slowly for years and it’s turned into a cancerous lump….

not sure what to expect tomorrow I bet it’s just ultrasound and they won’t say a word and il have to wait weeks for results 🤷🏻‍♀️ Xxx

Hi blackInk, so I went to my appointment it wasn’t a scan. He said I have nodules on the lump, and he put a camera down my nose (wasn’t too bad) I’ve got to wait another 3 weeks for ultrasound 🙄. Hope you’re okay.

Hi @Jodie569 I just came on to see how you were doing. I can't believe you've got to wait another 3 weeks for a scan! Although I'm still waiting for my appointment to come through, so who knows how long that will take. I'm worried that it will be really short notice and I'll struggle to make the appointment. I don't want to tell anyone (except DP, and I don't want to worry him too much!) what's going on until I know what I'm dealing with, so getting out of work / finding childcare at short notice isn't easy.

How can your GP possibly say your results are 'all normal' when you have raised T4, confirmed nodules/enlargement of your thyroid and symptoms?? Could you speak to them again about getting your scan faster? I was referred on the 2 week pathway for suspected head and neck cancer. The fact that the swelling on my thyroid had been there for 4+ weeks was enough to meet the criteria. I'm in Gloucestershire – not sure if that makes a difference. If you can tell me where you are I might be able to find the referral guidelines for your area online.

I'm so sick of waiting already. My swelling seems to be getting bigger and more uncomfortable – I can feel it when my head is in certain positions and swallowing feels difficult. I'm also worried that something has been wrong here for years and GP hasn't listened to me. I've had so many worsening symptoms over the past few years (or more) and so many dodgy test results that have never been followed up properly.

Actually, from what I can see ANY unexplained thyroid mass should be referred for investigation on the fast track cancer referral pathway....

im down south, it’s not too bad if I call my doctors I can get an appointment with in a day here, it’s a little village. But massive hospital.

im so sorry you’re struggling to be taken seriously. It’s rubbish isn’t it. I think I have a multi nodule groitre and it’s making my thyroid overactive (could be wrong I’m not a doctor lol). Maybe you have same which is why TSH is normal?. Call your doctor and say it’s making you feel poorly and struggling to turn head.

my pills are helping with the worrying xxx

That’s true hopefully we will be seen and sorted out. Wish they did all the tests/scans in one day! Making us wait around weeks is not good for our mental health!

Well, my TSH, T4 and T3 all came back normal (all low side of normal) from the finger prick test... I guess that rules out my symptoms being cause by the 'lump'.

Do you know what I find odd since I’ve upped my anxiety medication the symptoms gone?. He checked my pulse and it was normal. My partner has offered to pay private for a scan & biopsy if needed.

i been chatting to someone I know online who just had multi nodules groitre grow on her thyroid it was benign. She had surgery but it wasn’t her thyroid. Maybe that’s us?. She had the lump for around 4 years and then it started to grow bigger. She never had any problems with her thyroid before- there a few people I know who has had this I had no idea how many of my friends are under/over active and had surgery/radio active. It’s more common than I thought- people just don’t talk about it.

My appointment's come through for next Friday (14th) and is for a one-stop head and neck cancer clinic, which sounds a bit alarming. I think it will be an ultrasound, then fine needle biopsy if needed. I can feel the lump pretty much constantly so it's going to be hard trying to forget about it until then.

My appointment just came through for next friday too at 3pm! it just says Ultra sound. I was expecting it to be yesterday but he put a camera down my nose (It was okay just felt weird). He felt my lump and said I have nodules and then asked some questions about my symptoms. I was in there about 10 minutes. He said my scan referral would take 3/4 weeks but came through today. Same here I feel like mine is getting bigger but that could be anxiety. Feel pain in hips and in armpits but again could be anxiety... Good luck!

BlackInk- thats what mine said you will only be asked questions, they will feel your neck and put camera down throat. He will most def say need ultrasound as well. I am not sure if they book in for biopsy or they do it if they see something nasty? I am scared but also had a enough of living like this its hell isn't it, just want it sorted out.