Fast growing thyroid nodules

[BlackInk]

Hello, my first post on this board.

I'm just wondering whether anyone here has experience of fast-growing thyroid nodules?

I noticed a small round swelling in the middle of my lower neck/throat in October and went to GP. They checked my TSH, and it came back right at the bottom of normal range, and referred me on 2-week pathway to ENT.

Ultrasound scan showed one larger colloid cyst (28 x 25mm) and some smaller colloid cysts and spongiform nodules – but nothing looked suspect for cancer so I was discharged. I also had a camera down my nose where they noted phonatory gap/paralysed vocal cord but said this wasn't connected.

About a month ago I noticed that the swelling in my neck had grown (visibly doubled in size) so went back to GP. Before going back I googled to find out whether it was normal for benign thyroid cysts to grow and I discovered that it is, but usually less than 2mm a year. GP contacted ENT for advice and I have an appointment with an oral/maxillofacial surgeon in a couple of days.

I guess I'm surprised that the appointment isn't with ENT and wondering whether it's a mistake. Also wondering whether anyone else has experienced fast-growing benign nodules and what the outcome was.

I do have lots of symptoms of 'something', including weight loss, but ENT seemed to think they can't be connected to my thyroid as my TSH was normal. They have refused to do any further blood tests.

I can feel the lump all the time – a pressure feeling – and it occasionally aches. I'm finding swallowing hard work and noisy and feel that my breathing's very slightly constricted when I lie down in certain positions. My voice sounds slightly hoarse and breaks easily. I've lost range when singing.

Thanks in advance for any replies, and apologies for the loooooong post!

[SlowDragon Administrator]

Welcome to the forum

Suggest you consider getting FULL thyroid and vitamin testing done yourself

For full Thyroid evaluation you need TSH, FT4 and FT3 tested 

Also both TPO and TG thyroid antibodies tested at least once for autoimmune hypothyroid disease

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high thyroid antibodies 

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis. 

Both are autoimmune and generally called Hashimoto’s.

Hashimoto’s frequently starts with transient hyperthyroid results and symptoms before becoming increasingly hypothyroid

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)

20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis 

In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)

Recommended on here that all thyroid blood tests early morning, ideally just before 9am

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

List of private testing options and money off codes

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Only do private testing early Monday or Tuesday morning. 

Watch out for postal strikes

Link about thyroid blood tests

thyroiduk.org/getting-a-dia...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism 

thyroiduk.org/wp-content/up...

Come back with new post once you get results

[BlackInk in reply to SlowDragon]

Thank you for all the information! I do have B12 deficiency (3-monthly injections) and have had on/off low iron for many years. I will ask about a FNA on Thursday if they don't suggest it...

[PurpleNails Administrator]

Colloid nodule are solid (not fluid filled).  spongiform have honeycomb appearance & can be cystic / fluid filled. 

I have a 5cm colloid nodule, which was given fine needed aspiration (FNA) during first scan.  This was likely as not seen previously & seemed to grow very fast.  I have abnormal hyper function - but this was missed. 

Make sure your doctors know of your physical issues & the feel that it has grown.  I would push for a FNA as a precaution.

TSH is not reliable - you really do need FT4 & FT3 tested, arrange privately of necessary. 

Do you currently take replacement? 

[BlackInk]

Thank you. No, I'm not on any thyroid medication. I think my colloid cysts are part fluid part solid. I'll ask for a FNA at my appointment on Thursday if they don't suggest it...

[BlackInk]

Just to update... my appointment this morning with the maxillofacial surgeon went ok, very fast! He just had a quick feel, asked a few questions about symptoms and said he would refer me for another scan (with FNA if the scan looks at all suspect). After that he said I can choose whether I want it removed, although he gave the impression he thought the risks of the surgery might outweigh the benefits at this stage. Scan should be in a couple of weeks, followed by an ENT appointment a couple of weeks after that to discuss results/next steps.

[PurpleNails Administrator in reply to BlackInk]

sounds quite reasonable, most importantly are you happy with plan?

I have had occasions where doctors have started preparing equipment saying we can do a FNA right now. Then there are other times the doctor says they are changing the plan - this doesn’t need a FNA.

I’ve also been told I could have a FNA but strongly given the impression is wasn’t necessarily. I agreed with them, but I know in such cases it’s reported as patient offered but declined type comment.

Be ready to push and say please do everything to check.

[BlackInk in reply to PurpleNails]

I was expecting to be 'reassured' and dismissed to be honest, so yes I'm pretty happy with the plan. Although, as you say, the ENT consultant may well say a FNA isn't necessary if the nodules look ok on scan. I guess then it will depend on the size of them. I've read that anything over 4cm should be removed regardless of any symptoms. I definitely have symptoms but last time he told me that they weren't being caused by the nodules. Wish I didn't have to wait weeks for the scan, but it could be worse!