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 :)

I meant to say - has anyone referred you for a swallowing assessment?

Thank you for replying @strongallowed , I’m on the waiting list for a gastric emptying study and have previously had an endoscopy - sliding hiatus hernia but everything else looked ok. I had a group zoom appointment with SLT but it was very general and all things I already do. I was discharged from SLT straight after the zoom. I’m reluctant to go back to GP because they’ve been so dismissive. Every test they send me for comes back with something not quite right but it’s always NFA and back to square one. Nobody wants to look at the big picture!

I’d get a second opinion from a surgeon, dh had a massive goitre that went cancerous after years of fine needle biopsies. He died within 6 months of diagnosis and the surgeon shrugged his shoulder and said “biology”

I'm sorry to hear about your DH @Fluffycloudland77.
The ENT consultant said that my nodules don't look suspicious so no biopsies required. My goitre isn't massive. There's a visible swelling in my throat, and I can feel it, but biggest nodule is just under 3cm x 3cm. I think NHS advises biopsy if over 3cm even if nodules don't look suspect, but I'm not certain...

They said all that to dh, all the fna from 2006 onwards were clear.

Head & Neck cancer survival rates are poor.

So sorry for your loss. That's so sad your dh passed away when it could have been prevented. I hope this isn't our case, it's so difficult when no one is helping, I don't have the money to go private otherwise I'd have it removed completely. I hate living like this it's so uncomfortable and worrying all the time.

Hi @Jodie569 Have you had a date for the camera down your throat appointment yet? How are you doing?
I'm definitely building up to going back to my GP. My symptoms are still the same and I'm still steadily losing weight. My thyroid swelling has definitely grown since it was scanned in October and is now visible to the right side of the tendon thing in my neck as well as in the middle. This seems like fast growth??

Hey, I have a gastroscopy booked in next week because food gets stuck in throat
as I’m swallowing . My doctor said she then can refer me to look into getting nodules or thyroid removed, things have been okay I don’t think mine has grown any bigger.

They should be investigating your symptoms. I really hope you get something done. Is it making you feel like your choking when you swallow food? It’s awful isn’t it.

I don't feel like I'm choking when I eat, but swallowing feels hard work and I eat really slowly. I do get woken at night choking though and can feel pressure on my throat when I lie down.
I'm going to try to book a GP appointment tomorrow, but I expect there will be a long wait.
Good luck for next week – please let me know how you get on x

How did it go @Jodie569 ?

Hey, its not this week its next (14th) I got my dates wrong. But will update you. I am going to try and be brave & do it without sedation. How have you been have you been to the doctors?.

Ah, good luck for next week then!
I've had 2 endoscopies but opted for sedation – I've got a fear of vomiting so would definitely have panicked!

I had a GP appointment last week. GP agreed to retest TSH (which has come back low end of normal again at 0.5) and agreed that the swelling in my neck has got visibly bigger – the visible swelling was 2cm in October and now 4cm. She said she would write to ENT for advice and I thought they would come back and say they don't want to see me. But, to my surprise, I've just received notification that I've been re-referred on the 2-week pathway. I'm a bit shocked to be honest. I think it's because it's grown quickly and the GP did seem to listen when I said I can feel pressure and am having trouble swallowing. Just waiting for an appointment to come through now.

@strongallowed I'll be sure to mention my noisy/laboured swallowing at my appointment. The ENT consultant I saw at my scan appointment who did the nasoendoscopy originally said vocal cord paralysis but when he wrote to me with results he said phonatory gap. I had a virtual group speech therapy appointment but it was very general and not very relevant.

Hey, so sorry for late reply. I am so glad that you are being taken more seriously now. I think now you can hopefully go down the route of getting something sorted. Our thyroid results are different to other countries so if you was anywhere else you probably be on medication. I really hope you get some results on this. I will let you know how I get on next week- I am dreading it but I do not want to be sedated. Hopefully I wont vomit.

Good luck tomorrow @Jodie569 ! You'll be fine, I'm just stupid about things like that. It was over really fast and they let me know the results straight after so no long wait to hear. They didn't find anything significant on mine, just a small hiatus hernia and a slightly collapsed intestine but both of those 'normal'.

Ah thank you, I got a feeling that if they find nothing I’m going to be left to it again. It’s so frustrating isn’t it…

How have you been? Have you heard anymore?.

Hi BlackInk, so I had it done this morning. Didn't have sedation only throat spray- worst 3 minutes of my life haha. They took biopsies from my stomach (not sure why) but said they could see anything bad all clear. Not sure what happens now... he said I may need some antibiotics if my stomach comes back positive?! I got a feeling nothing is going to get done after... back to square one.

How are you?

Hi @Jodie569 Glad you survived the ordeal, you’re a brave woman! Sounds like the biopsies are to check for h pylori as they mentioned antibiotics. It’s a common infection that can cause stomach symptoms/indigestion. Frustrating though it is I’m glad they didn’t find anything nasty. It’s so hard when you just know something isn’t right.
My appointment is next Thursday so a bit of a wait yet. I’m worried they will tell me my lump hasn’t grown (even though GP noted it was 5cm and previously was 3cm). I’m not sure what to expect, another scan/biopsy maybe if I’m lucky?

I just know that nothing is going to come of this if the biopsy comes back clear.

I can’t believe they are not doing anything, if your lump/nodule is over 4cm it has be checked and consider removing it?. I had this conversation with a friends mum who has nodules for years, she did tell me earlier that the hospital told her that if she’s choking they will remove them.

why they aren’t doing anything to help us is so frustrating. Good luck next week i really hope you get frobbed off again!

Hi Black ink, I got a letter from the hospital today confirming I have a stomach infection (could of had this since I was a child). So I've got to go on antibiotics now.

Hi @BlackInk i had the same thing!! All of a sudden it appeared and it moves up and down when i swallow. I was referred to the hospital and was told it's a goiter by student doctors. They said it can be removed but part of my thyroid will have to be removed too so i opted out of that.
I removed wheat from my diet, not gluten but just wheat stuff and it appears to have shrunk. Also try spiruilina and chorella in some water it has loads of good vitamins.
Hope the above helps x

Hi @Jodie569 At least you may have got to the bottom of your stomach issues, is it a long course of antibiotics? I guess it doesn't help you with the thyroid symptoms though... little steps!

Thanks @Summer2424 My thyroid function tests have all come back in normal range so I'm not sure that changing my diet would do anything? I've read that thyroid nodules can be caused by either too much or too little iodine so I'm a bit wary of trying seaweedy supplements. If my next appointment doesn't lead me anywhere I'm going to have to try something though. My swelling hasn't been called a goiter by the doctors – they just said colloid and spongiform thyroid cysts. From what I gather they usually grow slowly if at all (a couple of mm a year max) but from what I can see in the mirror mine has grown at least 1cm in a couple of months!

Hi @Jodie569 How are you doing?
I saw the maxillofacial surgeon last week. It was pretty quick but he referred me for another ultrasound scan and fine needle aspiration, although they might decide the FNA isn't needed if the scan looks ok. He had a quick feel of my neck but didn't say anything. He did say that I would be offered surgery, but that it's not a decision to take lightly due to the risk of further damage to vocal cords. I have a feeling though that they will scan and then send me on my way. I know I'm lucky not to have to wait toooooo long but the 14th feels like a long time away!

Hi all, interesting thread. I too have had a goitre and a TSH around 0.3/0.4 for at least seven years years. I’ve tried so hard to get referred to an endocrinologist periodically but every single time the GP says no “because my thyroid blood tests are normal.” 😒

Well, I had surgery earlier this week and the anaesthetist was horrified at the fact that the goitre has never been monitored given that it is “quite big!” She said she would do a “specialist to specialist” referral.

Will let you know how it goes…

To clarify, the surgery wasn’t related to thyroid/goitre!