If it not a Goitre?

[JCMartin]

If its not a Goitre what could be blocking my windpipe? Just the Goitre symptoms really fits. Hooefully ENT will assist. If not im not sure where to turn. Also have a lung functions test.

[Buddy195 Administrator]

Do you have an ENT scan/ lung function test booked JCMartin? I really hope you get some answers soon.

I know from personal experience that worrying & anxiety make breathing/ swallowing issues worse. I think you said in your last post that resting eases some symptoms, whereas increased movement intensifies them. Is there a time of day when your symptoms are more acute?

[PurpleNails Administrator]

Just checking, you currently take no supplements or thyroid replacement?

Has any doctor actual examined your neck? Often they don’t, Doctors prefer to looks at results on a computer screens.

That’s what I found as two doctors declared my neck was “fine” (visually) on a 3rd appointment with nurse. I took a bottle of water & said look at my neck when I drink.

If you incline your chin upwards and swallow (or gulp a good mouthful of water) your thyroid moves up and down is you have a swollen gotrie or any nodules it can become apparent.

In my areas Doctors used to be able to refer direct for neck scans but now they must go through ENT. (An added step & wasted of time, in my opinion)

In one of your previous post you asked about further NHS treatment if you paying for private scan.

I’m not sure in anyone answered but you're still entitled to free NHS care if you choose to pay for additional private care.

nhs.uk/common-health-questi...

They are treated as separate, this is why doctors say they can’t go by private tests & carry out their own. You do however have the information & strong grounds for doctors to carry out further tests / treatment.

Your symptoms do seem to fit & with goitre & under active thyroid.

The many reason for feeling of something in throat & added breathing issues. Causing both symptoms together or from separate reasons. Some examples are pre-existing trauma, infection (viral & bacteria), many forms of autoimmune disorders, & tumours. Then there are doctors that will say it’s acid reflux or post nasal drip causing globus sensation. Or if doctors can find an obvious answer they tend to go for stress / emotionally related.

[Hedgeree]

Hi JCMartin,

Have you long to wait for your appointment with ENT?

From personal experience I found ENT to be very helpful. They identified nodules on my thyroid after I had an ultrasound, when a GP couldn't feel any lumps at all.

It is awful feeling so unwell but hopefully you'll get answers soon.

[Brightness14]

I had no symptoms at all and knew nothing of the thyroid, when walking up a very steep hill I couldn't breathe. I had a lump on my thyroid which caused my trachea to move.

I was given no treatment for this. Then I moved to France. I had a scan done straight away, and was operated on 5 months later. I had a thyroidectomy and my trachea was moved back into the correct place. According to the surgeon I was unusual in that my thyroid was working perfectly before the removal.. Sounds a bit like you. You need a scan to be certain.

[CernCrystal]

Hi, lots of great advice above but this may help too: I complained for a long time about difficulties swallowing, retching, asthma symptoms etc and as my goitre was not too large nothing was done. Turned out that the scans and ultrasounds I had were only on the neck and did not show that my goitre had grown into my chest cavity. Once removed (surgeon was v surprised at how large it was - especially the balloons in my chest cavity) all my symptoms to do with swallowing etc went away. Do get them to check nothing has grown downwards too. On the scans (hindsight was a great thing!) it did show two very feint tendrils growing downwards off my goitre.

[JCMartin]

Thank you. I think this would explain a lot if i have the same. Hoping to get the docter for an ultrasound as i am now on 2wk cancer watch for head/neck cancer. At this stage i jist need a diagnosis. I can deal when i know the score. I also wondered about Superior vena cava syndrome (SVCS). Its so hard not to Dr Google as i have no firm answers.

[Hedgeree in reply to JCMartin]

It is very difficult to not keep on searching on Dr Google for answers, as many on the forum have done the same. But try to avoid doing so if you can.

Hopefully soon your ENT appointment will be useful and once you get an ultrasound fingers crossed you start to get answers.

Good luck.

[JCMartin in reply to Hedgeree]

Very true, thanks. Its just so hard when its a waiting game, been ill sines June.

[Tlflom in reply to JCMartin]

Radiation shrinks SVCS pretty quickly. It is usually associated with leukemia. Some types are extremely responsive. I have had patients who lived a long time. When something pops up they come in for what my rad onc calls a little spot welding. Don't worry about it until the diagnosis. One day I noticed a large swelling similar to a SVCS. We rushed to the ER and emergency CT. I had several possible diagnosis. The young ER doc said it looked like a bleed another thought it was a leak in the lung putting air in the muscels of the supra clavicle area. Either was it was gone in 2 days. And MRI would have been more definitive. A side note they separated me from my husband and pushed me to say I was abused. My husband is the dearest, kindest man ever. But I get it.

[Tlflom]

Sometimes a stricture can occur. If diagnostics find this, a simple procedure of a balloon can be inserted, and inflated to stretch it out. Relief is usually immediate. Sometimes thinking outside the box is what is needed.

[Ontherun81]

Hi I have the same issue with my Thyroid gland, after pushing for testing I was told a certain percentage of people with low thyroid have nodules that grow internally on thyroid gland rather than a goitre. Had ultrasound of thyroid done and low and behold I have 2 poss 3 nodules growing into throat! I've been told as long as thyroid meds managed correctly it should keep them at bay!?! My issue is as we are measured on a range, what should my real level be? We're all different levels, and as it flares up regularly when do my meds go up? Difficult when can't get go appointments, backlog of ultrasound appointments in my area and as it flares up its not regular enough to warrant upping meds?!

Push for ultrasound and tell gp do homework, it's not always external goitre!

Good luck!🍀X

[JCMartin]

Thanks only just seen this. I went private in the end as i dont trust my GP to manage this after he didnt give me a diagnosis. 8 months ago i told him my neck was swollen etc .. i have a head MRI soon and thought that might be a good double check on things. I would recomend going private to an Endo every few months - but i am going to struggle to pay for it as the blood test is £111 as well as the consultant £250. But if he keeps me well it will be worth it. No strength to battle the docter anymore.