As the title says, are there any official UK guidelines for management of thyroid nodules? I've googled but can't really find anything...
I have a 3cm x 3cm colloid thyroid nodule and a few smaller colloid and spongiform nodules – seen on ultrasound after I noticed a visible lump in my neck.
The consultant also did a naso-endoscopy and noted phonatory gap/vocal cord paralysis but said it's unconnected and not an issue.
As the nodules look benign I was discharged from ENT with no follow up or further action.
The swelling on my thyroid causes me constant discomfort. My voice has changed, swallowing often feels laboured and I wake up at night gagging – I think due to pressure on my throat when I lie down.
My thyroid blood tests have all come back normal – TSH tested a few times by GP and always near the bottom of normal range. T3, T4 and thyroid antibodies all low-normal too (tested recently using Monitor My Health).
The consultant was so patronising and dismissive. He said there's no way that the nodules can be causing my symptoms but surely 3cm x 3cm is big enough to feel?? I've lost a lot of weight and feel awful all the time, but I guess it can't be thyroid related or my results would be off?
Thank you for 'listening'!
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BonyVeronika
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So, what are your results? Doctors are not really very good at interpreting blood test results so often miss the obvious! Post the results and ranges on here and let's have a look.
I don't know if a thyroid lump and a thyroid nodule are the same thing, but here is a link to the info on "thyroid lumps" in the NICE Clinical Knowledge Summary on "Neck Lumps".
Thank you, I was referred on the 2 week pathway last Autumn when I first found the lump – US showed benign colloid cyst (2.4 x 2.5cm) and some smaller ones, all looked benign.
This Spring I felt the lump had grown and was causing symptoms so GP referred me for another scan. Largest nodule now 3 x 3cm but still looking benign so discharged and basically told not to come back...
The guidelines you shared don't mention any follow up or monitoring, or whether compressive symptoms should be taken into consideration.
Have you had testing to see if any nodules are “hot” …..making thyroid hormones regardless of TSH and can result in thyroid hormone levels being inconsistent
Nodules, even if larger in size don’t always cause physical symptoms. It depends on the place & having several on both sides can make a difference. It might be the thyroid is swollen.
Being in pain, having restricted breathing & weight loss should all be taken seriously by doctor.
Recommend you obtain copy of ultrasound report, I might have comment about the health of your thyroid separate from the nodules.
I have a 5 x 5cm colloid nodule which doesn’t cause noticeable issues. I also has naso endoscopy & was told “it wasn’t too squashed in there”.
Your function shows low TSH, Low FT4 & FT3 but as they are in range your doctor will consider case closed, but repeat thyroid function to monitor for any changes.
Were antibodies low or negative?
Weight loss is often associated with low TSH / high FT4 & FT3 but everyone is individual. I had hyper levels & gained weight.
Thanks for your replies folks. I'll try to answer everything here...
I've had TPO tested (Negative 9 IU/mL) but not TG – is there a fingerprick home test available for this where I don't have to pay for a whole package of thyroid tests?
This is my scan report from the first ultrasound. I wasn't sent a copy the second time. No mention of hot or not.
I have regular B12 injections through my GP because my levels are low despite decent diet. All other FBC results within normal range (folate low normal) except for minor signs of iron deficiency anaemia. I take a decent multivitamin/mineral.
Ultrasounds can’t determine the function of areas of thyroid. Doctors rely on blood tests for levels. It’s not known if the nodules are non functioning or not.
Doctors suspect hot nodules If levels are high & TRab / TSI antibodies are negative then they arrange an uptake or nuclear scan. Which reveals the functioning areas of the thyroid.
Nodules under 1cm, tend to be class nodules “insignificant”. 1 of your nodules is larger but has no concerning features.
Multivitamins aren’t recommended. Quantity’s in multis aren’t high enough to help low levels, often containing the cheapest, least absorbable forms & things like calcium, iron, iodine which should only be supplemented if known deficiency need to be addressed.
I have nodules and recently saw ENT for a naso endoscopy as last year there was a problem getting the breathing tube down my throat during an operation. The right side of my neck is very noticeably swollen, but I was told that although things were narrower than normal there was nothing untoward seen. I haven't had an endo appointment for some time as have been having treatment for breast cancer for the last 18 months, but am due one shortly and will be asking for another ultrasound to check everything is ok. I get the feeling they don't remove anything unless they really need to, and none of us want an op unless absolutely necessary, but in your case I would push for more investigations as it's obviously causing you quite a lot of discomfort. I was diagnosed with sleep apnoea a few years ago and I wonder whether that has been partly caused by my nodules.
I had about five or six; only two of the larger ones were being little buggers. And it was only because of their size and placement against the trachea & windpipe. And one on one side and one on the other.
Here (Canada) if a nodule reaches 4 cm it is considered for surgery. Why? Because a fine needle biopsy can be clear but the needle has more chance of hitting where the cancer isn't, if cancer is present.
I had all the symptoms you listed, and choking as well. And had a total thyroidectomy. I instantly felt it gone. And the difference with breathing, voice & choking was incredible. All my loved ones commented instantly on my voice.
I was absolutely content to monitor for life with yearly biopsies and scans for the larger ones. And had zero interest in surgery. It should always be a last resort of course. And even though they were suggesting it, I still said nope.
Why did I change? Two things happened at once. I almost drowned despite being a strong swimmer - I instantly had nothing in me. And coincidentally the endocrinologist had me put my arms above my head and lower my chin towards my chest and said talk. Talk? I could not breathe right away & what came out sounded like the devil. Give that test a try - that was its purpose - to note if there was too much of a blockage, she just did not tell me in advance. (Of course I can do it with ease post-surgery and talk away!)
Despite still not having hormones in order a year & a half later I have zero regrets about the thyroidectomy. It is unreal how different I feel with it gone.
All the best to you.
Oh and despite having normal labs out came a diseased thyroid; in the pathology report and via the surgeon's words directly to me.
No, no biopsy offered because the nodules look benign. And no follow up or monitoring. I don't feel like I can go back to my GP again because nothing has really changed. No breathing problems but to me my voice sounds rougher and kind of 'strangled' and weak, and my singing voice has been affected – my voice just cuts out if I try to sing loud and I end up croaking (I sing in a choir so this is a problem for me).
The biggest nodule is a colloid (solid) cyst so can't be drained and they said would be hard to biopsy.
Just feel I've been told to go away and put up with it, which I can – it's uncomfortable rather than painful mostly – but on top of everything else I've got going on it feels like the straw breaking the camel's back!
I guess I was just hoping there were some guidelines somewhere that said there should be follow up or regular checks.
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