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 :)

My appointment is 8:30am but says be prepared to stay for a few hours, depending on what they find at each stage. Just got to try not to overthink for the next week or so! xxx

Hi Molly, what sort of lump did you have? Was it benign? Or did they do all the scans because it was inconclusive?. Did you have any problems with thyroids before?. I think my lump has slowly been growing for years because I could feel something in throat years ago but obviously wasn’t showing on neck. I had covid in August and then neck started swelling. The hospital said he can feel thyroid nodules. How was the surgery? I think I’m definitely going to have to have it.

Hi BlackInk, I wish mine was morning. Least they are investigating it, I’ve had enough where im
so exhausted and anxious it effects my throat so always uncomfortable. I wish friends would tell me to be positive and stop thinking about it… easier said than done.

Thinking of you this morning hope it all goes well 🤞🏼 Xx

Hi BlackInk, how did you get on?.

mine was good news thankgod! It’s a big clear cyst and one little cyst growing. The lady was amazing she sat with the screen and explained everything while doing it. Said nothing to worry about. Thank god! Xx

Hi @Jodie569 That's great news! I got pretty much the same outcome, but I don't feel as positive about it...
The ENT consultant used a naso-endoscope to look at my throat then did an ultrasound of my thyroid area. The results are that I have partial vocal chord paralysis (same side as thyroid swelling) and some cysts (one larger and some smaller?) in my thyroid. I think he said the cysts were 'colloid' and mainly fluid with some solid matter but I'm not 100% sure. I don't know the size. I've been completely discharged and told that unless the cysts grow 'massive' then nothing needs doing. I should be relieved but I feel totally broken. I was resting all my hopes on this being the cause of my ongoing symptoms and that something could be done to help. He said that the problem with my vocal chords is totally unconnected and that my problems with swallowing are caused by the vocal chords not the cysts. I feel so lost and confused. Don't know where to go from here.
I feel bad because I should feel relieved like you that it's nothing nasty. But I just want to feel better!

Oh blackInk, can’t go on feeling like that they need to do something! It’s obviously covering your thyroid and making you have symptoms isn’t it?. That’s terrible. If it was me I would say that you can’t breath and you are choking. Surely they have to remove the cysts?. This is exactly what you said in earlier posts didn’t you. I hope you go back and see if you can get them Removed. I’m gutted for you.

saying that I’ve not even had my ENT appointment yet, it’s in November! They might say the same to me 😩 xx

Thanks @Jodie569 I guess I'll have to wait for the report/letter to come through. I'm hoping it will give me some info on the size/type of cysts so I can rest assured that they're not causing my problems.
He referred me to speech therapy for the vocal chord problem, but I'm not convinced I need it as such. I've recently noticed my voice being a bit weaker and breaking sometimes when I shout or sing, but I hadn't thought much of it before I spotted the thyroid lump. I was so sure it was connected but maybe I'm wrong!
I hope your ENT appointment is more helpful. Make sure you go with a list of symptoms and questions x

it doesn’t make sense, he should be offering for removal. You have loads of cysts and you won’t know how quickly they are growing, I feel so sad for you because I know how badly you wanted something sorted. I would be absolutely gutted too. I don’t even know if they will remove it but hopefully will.

try and get a second opinion or say you’re not happy with the outcome. You can’t live like that. My voice has completely changed too- it’s the cyst! Yours even more because you have more.

xx

Hi @Jodie569 How are you doing, and have you had your ENT appointment yet?

I'm about the same. Had my speech therapy appointment today but it was a group appointment via Teams so it didn't feel very helpful – just some advice on coping with the symptoms of paralysed vocal cords but no further information about the thyroid scan results. I'm tempted to email the ENT consultant's secretary and ask for a copy of my scan and details on the size and number of cysts. I still find it really hard to believe the two things aren't connected!!

Hey, I’m okay thank you. Not till 24th November. Not heard anything about results either. I’ve been okay not had any pain other than the restricted breathing still.

That must be so frustrating for you, I hope you manage to get to the bottom of it all soon. Are you still having all the same symptoms?. I agree it’s very odd what they have said and it doesn’t sound like they are being very supportive or helpful in your situation.

Hey BlackInk, I went to my ENT appointment this morning. It was terrible just said because we can only see clear cysts I won't need a follow up appointment, when I questioned him he just shrugged and said I have to live with the lump and all the symptoms I get with it. So I'm looking at going private to see if I can get something done.

Hope you're okay, have you had any more appointments?.

@Jodie569 Oh no, that's rubbish! Did they tell you the sizes of the cysts or how many? Online it looks as though they should remove if they are 4cm or larger. My consultant didn't tell me what size mine are but said they won't do anything unless they get "massive". I've emailed his secretary to ask how big/how many mine are and also queried again his opinion that my vocal cord problem isn't connected. I haven't heard back and that was a few weeks ago.

I think we are entitled to a 2nd opinion on the NHS but not sure how you go about it.

What did your consultant think was causing your breathing/swallowing issues if not the thyroid cysts?

I had sudden swelling in thyroid. Turned out to be a cyst. Nodules are often in active and have no effect on thyroid hormones so they leave them.
They attempted to drain my cyst but it turned out to be a colloid cyst ( gel like content that could not be aspirated). As it wasn’t causing trouble they decided to leave it and I had 6 mnth revs and biopsies planned. Unfortunately it haemorrhaged a month after the second biopsy, swelling rapidly. This was drained as an emergency but my ENT surgeon decided that it was better out than in due to serious risk of further haemorrhage and I had a hemithyroidectomy.
I have had no problems since.
Most of your symptoms are very general apart from weight loss. Hopefully they will get to the bottom of it.
The fine needle aspiration is very uncomfortable. Ironically when I had the emergency aspiration the surgeon didn’t use the freeze spray and it was much less painful. It may have been due to the pressure from the enlarged cyst having a numbing effect.

Speak to a GP who will arrange some bloods, that's your best bet.

Thanks both. NHS tested my TSH already and it was normal (right at bottom of range). They weren't willing to do further thyroid tests based on this but I did a finger-prick private test for T3 and T4 and they were also normal. However, the enlargement of my thyroid is causing swallowing problems and I have problems with my vocal cords (vocal cord paralysis). The ENT consultant dismissed these and said not connected.

Sounds like we both have similar thing. He didn't say much just good news that it was clear nodules (different to what the lady scanning said). I'm definitely going to get a second opinion. He said there is no follow up appointment, so I wont get them regularly checked every year either. What a joke.

I hope they get back to you soon.

I forgot to say all my tests came back clear. He said please don't ever waste your money on private tests because ours was completely different. He said my restricted breathing laying down wasn't anything to do with the cysts, so maybe its something else going on... I give up lol

Ho angry mum did you have this done on the nhs?. I find it I take my tiny pill in the morning I can still feel it in my throat for a while after and eating food like bread can feel like it's slowly going down throat. It feels hard to breath laying down as well... glad you got yours sorted it sounds like you been through a lot. I hate needles but I'd have it done to get rid of even if I paid private.

I heard back from the ENT consultant today. He sent me a copy of the scan report (see pic) and is now saying that he never told me I have vocal cord paralysis, and I in fact have a phonatory gap, which is very common and not related to the thyroid nodules. He ABSOLUTELY did say "vocal cord paralysis" – I had never heard of it until he said it, and I came out of my appointment with him and told my partner straight away. I hate the way medical professionals undermine us.
So. I don't know where to go from here. A 24x25 mm nodule sounds big enough to cause issues to me, but I suppose all I can do is follow his advice and do nothing unless it grows "massive".

This kind of happened to me, the lady scanning said I had a big cyst. Then at the ENT appointment he said thyroid nodules not a big cyst. It’s so frustrating, are you going to get a second opinion and what are they going to do about it?. Mine just shrugged when I said it about all pain and problems it gives. They don’t care. Gutted for you and annoying that he has changed what he originally said.

Hi BlackInk, how have you been any more news?!.

I had a big moan at my doctors yesterday about how I am fed up with having food stuck in my throat, dental pain, headaches, heart rate etc...
she listened to me and said that the hospital ENT were awful to say I had to live with the symptoms! So she's referred me to have a camera down my throat this time and said she's going to try her best to get me referred to have something done with the nodules. Fingers crossed they maybe getting removed 🤞🏼

I hope you still come on here and see this!

That sounds positive @Jodie569 . I had a camera down my nose/into throat and that's where they saw the problem with my vocal cords, which apparently isn't connected to my nodules. No progress here but I'm building up to contacting my GP again. I'm so sick of feeling ill all the time, and still loosing weight. Just wish I knew what's going on! I'm having more trouble with swallowing. Every swallow feels like hard work and even when I drink water my swallowing's really loud. Hope your referral comes through quickly x

Sorry to hear you’re still feeling ill, I said to my doctor that I had a camera down my nose when she said about having the camera down throat, she said it’s different- maybe it’s worth asking to be referred for this to see lower?.

i also said to her ENT said to me that all my symptoms wasn’t connected to nodules but the doctor tutted and said yes it does, even though our thyroid is working it still can cause the symptoms!.

please let me know if you manage to be referred. It really is depressing isn’t it ☹️

I'm a speech and language therapist and I specialise in dysphagia (swallowing difficulties) - I'd want to see you in my clinic. I'm concerned about your weight loss and your difficulties. There are things we can do and investigate. You don't usually get a noisy swallow with a phonatory gap.