goitre scan

[Hectorsmum2]

A couple of years ago I had a goitre that was obstructing my breathing at night. I was sent for a scan but missed my appointment. It has since I presume got smaller as my breathing is now fine thanks to some T3.

I just wondered if it would still be nessasary to get a scan to check for nodules etc. I would rather not and have very little faith in the NHS so dont really want any interferance from doctors.

[FallingInReverse]

my experience:

Nodules are a changing situation. Just because one isn’t obstructing your breathing doesn’t mean you don’t have one that could be an issue.

I had goiter/nodule or whatever you call it that was 1.9 cm and couldn’t feel it at all. Like it wasn’t there.

2 cm was the clinical threshold for getting a biopsy, which I never needed since the Levo did reduce its size l. But I still get a neck US every year since if it re-grows or new ones pop up I wouldn’t have any idea otherwise.

[SilverAvocado]

These judgement calls are hard to make If you could access a really good doctor, they would have the knowledge to let you know all the risks - including the risks of other overzealous doctors.

I have had my thyroid removed due to cancer, and had a very difficult time of it (am now disabled and in bed most of the time. I'm definitely at the unlucky end of the spectrum, but I think almost everyone will be worse off than they were before in terms of activity level), so it always boils my blood when I hear of people having such a serious and life changing operation just because a doctor didn't like the look of their nodule.

I'm afraid I can't give more specific advice. But one thing I will mention is that I have no thyroid at all, and I still have obstructed breathing at night from that area. I can't sleep on my back, and it comes and goes that I can't lie on my back at all, even when awake. At times I am even obstructed lying on my side or front and I have to arrange my pillows and neck to a specific straight angle in order to breath fully freely. I suspect this is due to scar tissue in my throat, but have had it examined a few times and whatever it is is not something clinically recognised. And I have gained about 5 stone, mostly over the period of my operations and RAI when I was given almost no thyroid hormone, so of course that contributes. I also have reduced saliva production due to the radiation, which isn't breathing restriction per se, but does mean if my mouth falls open in the night and I breath through it, my mouth quickly becomes painfully dry and can take a long time to rehydrate.

Just to say that a thyroidectomy is not a total quick fix for breathing obstruction, even though I am sure a surgeon would claim it would be. All these things are a quick fix for them, because after an operation you are no longer under their care, and don't get much consideration from any doctor about it.

[Hectorsmum2 in reply to SilverAvocado]

Thank you. i am sorry to hear your storie. How awful for you. Sending hugs and gratitude for the warning.

[FallingInReverse]

I’m from the US, so not sure I understand when you say:

I would rather not and have very little faith in the NHS so dont really want any interferance from doctors.

I do understand the incompetence of doctors … but…

Are you saying that just getting an ultrasound somehow may lead to you being forced to get surgery if something is found? Or… are you just saying the usual that it gets annoying when you have to navigate around doctors vs them actually helping ?

What is the downside of just “knowing” what an ultrasound would say.

Just because you can’t feel the nodules doesn’t mean it’s not still there nor suspicious.

Just curious since I’m not in the UK, but it does seem like a good idea to keep getting ultrasounds if you can.

[Hectorsmum2 in reply to FallingInReverse]

I dont know that I would accept treatment if they found something. i dont trust them not to find something that isnst there. i suspect if I had something nasty it would have spread by now. I suspect that nasty stuff often though not always goes way on its own. I would find procedures distressing. I think I would be putting myself in danger by engaging with a health service.

[FallingInReverse in reply to Hectorsmum2]

None of us - generally speaking - trust doctors or the medical system. I don’t think in the UK they can force you into a procedure any more than they can in the US. So isn’t it better to know, than not to know, empower yourself and make your own decisions.

The high rate of survival for thyroid cancer is due in part to early detection and treatment, particularly before it spreads. So that kind of nasty stuff does not go away on its own, and finding it early does improve outcomes.

[Mazzer]

hi I had a goitre that appeared to reduce in size. I thought it was improving However it was not shrinking but descending behind my collar bone. I was advised that regular scanning to check its descent was not possible due to cancer risk of multiple x rays.

If left it could descend further and risk pressing on my heart.

Sub sternal goitres are rarely discussed it seems.

I chose to have a thyroidectomy to avoid possible complications and major open chest surgery.

Get it checked. You have nothing to lose.

[Hectorsmum2 in reply to Mazzer]

Thank you for the information and advise. Are you well now?

[Mazzer in reply to Hectorsmum2]

I have had to work at finding the right meds. I now take Armour as Levothyroxine didn’t work for me.