Update - nodule and cyst

[Bambini83]

Hi, have posted a few times now with private blood results and background. Have had various symptoms since Nov 19 though GP has never linked these to thyroid. Am awaiting referral to neurologist. Found lump in neck and recent ultrasound. Bloods I did via Medichecks found low but not deficient vitamin D. Ferritin on low side and slightly raised TPO antibodies.

TSH (0.27 - 4.2)

0.685 mIU/L

FREE T3

(3.1 - 6.8)

5.82 pmol/L

FREE THYROXINE

(12 - 22)

13.4

THYROGLOBULIN ANTIBODIES

< 115 R

18.4

THYROID PEROXIDASE ANTIBODIES

< 34 R

57.5

kIU/L

I saw thyroid surgeon today who said I have a thyroid nodule on right hand side and cyst on left. I was a bit disappointed as I assumed both growths were on left. He said nodule non suspicious, cyst likely not suspicious but he did FNA and said if benign he will try and drain 2-3 more times. If it refills my left hand thyroid will be removed.

I mentioned my symptoms which have included fatigue, bloating, poor circulation and feeling cold, pins and needles, joint and muscle pain, headaches and blurred vision. Based on past TSH levels he could see he said my thyroid function is normal and none of the issues can be related to my thyroid. Perhaps I have a fatigue disorder or from low lymphocytes in May blood test perhaps I’ve had COVID and suggested antibody test. Didn’t expect that really.

I didn’t mention the private bloods I had done as I felt it a waste of time. Biopsy result in 2 weeks, have to go back in 6 weeks for redrain if benign. I’m planning to see an endo in Manchester privately dependent on the outcome.

Can’t lie it’s made me feel quite anxious but I guess FNA is a standard protocol in these situations. I forgot to ask why he would be so keen to get rid of the cyst if it is to be deemed benign. I’m not sure where it would leave me having half a thyroid with a nodule on it. Also started to feel worried again that perhaps symptoms are related to something else entirely.

If anyone reads thank you. I know it sounds silly but just writing things all down here does help.

[Whatifwby]

I have been through everything possible regarding Thyroid illness and now parathyroid. I now have had my thyroid removed completely and out of 4 parathyroid glands have only half left. The story is long and complicated (27 years) but I have had unexplained symptoms and have fought experts every step of the way. I also had modules removed from both sides of my neck. Symptoms same as yours but they were in my parathyroid glands which are either side of the thyroid. They only found them after low levels of Vit D were found. More blood tests revealed altered Calcium levels. I am told the Vit D makes a person feel ill like you describe. It might be worth getting your calcium levels checked. This was a last resort for my GP after months of not knowing what was wrong with me. Good luck and I hope it works out for you.

[Bambini83 in reply to Whatifwby]

Thank you so much Whatifwby. That’s really uncanny as my googling session yesterday actually led me down the route of parathyroid problems. Which led me to parathyroid cancer but I need to try not to think of worst case scenarios! The surgeon did refer to calcium level in previous blood test but I would be interested to test again. I’ve just started supplementing vitamin d. I gather cysts or tumours on the parathyroid glands are pretty rare. Did you have a growth on yours as well as thyroid growth(s)?

[Bambini83 in reply to Whatifwby]

Sorry just realised you’ve said growths were on your parathyroid glands. Was everything benign?

[Whatifwby in reply to Bambini83]

Hi. I just wrote you a very long reply but lost it all when I had to turn off my phone. Rather than write it all again I will try and condense it a bit. My parathyroid tumours are very rare especially to have as many as I did. But your symptoms are the same as I had and it was a thought that as you have found growths or tumours maybe there’s a possibility they have missed one on your parathyroid. This must be removed as it is a danger to your health. I had an ultrasound scan when my VitD and calcium levels were out. They were benign but cause all sorts of problems if not removed. I would suggest you find the best possible specialist and get a referral ASAP. It’s awful when no one listens to you. I found that if you don’t fit into their little boxes these consultants will find every way possible to squeeze you into one and send you away. It’s soul destroying. I don’t know where you live but I was under Warwick Hospital and they were amazing. If you want I can give you the name of my surgeon. She is one of the best. I believe you can self refer anywhere now. If you would rather talk privately then let me know.

[Bambini83 in reply to Whatifwby]

Thank you so much. Genuinely appreciate you taking the time to reply. I’ve just booked to see a private endo based in Manchester at the end of this month - I’m hoping she’ll have an opinion on my symptoms and parathyroid is definitely something I will mention to her. I’m based in the northwest but willing to travel. Do the parathyroid tumours tend to show up on ultrasound? They’d classed both my nodule and cyst as thyroid related but I did wonder how easily parathyroid growths could be missed. I will certainly bear in mind your surgeon recommendation and may private message you down the line if that’s Ok with you. Thanks once again for your kindness 😊

[Whatifwby in reply to Bambini83]

Absolutely message me anytime. It’s easy to miss the parathyroid tumours. Sometimes they don’t find them until they actually get inside and have a look. But your blood tests should show any signs. Calcium is the biggy. I have been so ill for many years and to the point of suicidal so I know how you must be feeling right now. I am still not well. Just been for bloods this morning. I do hope you sort yourself out. Message me anytime if you just want to talk or you can speak on the phone if it helps. I will pass on the details of my surgeon privately if you need it. Kind regards. Kim

[Bambini83 in reply to Whatifwby]

That’s so kind Kim, I hope you get sorted too ♥️ It’s so nice to speak to people who actually understand. Thanks again!

[Whatifwby in reply to Bambini83]

No problem. Anytime. I hope you have people around you who understand. It’s difficult when you can’t see or explain an illness. I wish you well. Kim

[tattybogle]

I think you're right to want to hear answers to some questions, before you accept their opinion that a) removal may become advisable, and b) symptoms are not thyroid related.

Like you say... why the need to remove if benign ? . What could happen if they leave it ?

Is it just more efficient for their budget to remove rather than keep draining at intervals if needed, or is it an actual risk to you ?

(I have no experience of nodules or cysts, but judging by stories on here of problems with replacement hormones , i wouldn't want anyone anywhere near my thyroid or parathyroid glands with a scalpel unless it was a clear cancer risk.)

What, in their opinion, ARE the symptoms of thyroid problems (i bet it's not a very comprehensive list !)

And of course there's that small matter of pronouncing 'normal thyroid function' using TSH results without looking at FT4/FT3 together. But you can check that out yourself with help from your private tests and collective wisdom here.

[Bambini83 in reply to tattybogle]

Thank you tatty - that’s exactly what I need to ask when I go back and didn’t think to at the time. Why he would be so keen to remove if benign. I hadn’t considered maybe it’s a more cost effective solution in the long term. I’ll seek a second opinion for sure.

[tattybogle in reply to Bambini83]

For example, my son had a misaligned 'extra' tooth. the orthodontist wanted to spend two years with braces and removal of a different tooth to get a perfect even result on his front teeth. My son ,aged about 14 ,wasn't keen , and didn't actually care about whether the gap in his front teeth ended up exactly central.

so we asked him "sorry if it's a silly question ,why couldn't you just remove the 'extra' one instead of making him wear braces for years ?" "oh well, yes we could do that, it's just that we orthodontists get really exited about a case like this "

son said .... " i bet you do...... about 3 ,000 £'s worth of exited ? "

.......We just got the dentist to take it out for free despite her concern that it would leave a big hole, and his teeth moved round themselves over the next couple of years, and he's extremely handsome.

It's always worth asking the 'silly questions'....... sometimes the answers are very enlightening.

[MrsButler]

I've just had a similar experience.

I've had a cyst drained but will need removing at some stage.

When I had the ultrasound I mentioned I have hypo symptoms, he asked what they were and then said "sounds like you've been googling it" really dismissively. I had to try really hard not to cry. And my bloods are in range so obviously I'm imagining it all.

I'm a carer for my daughter so apparently that's why I'm tired according to him. It's not that, it's a physical exhaustion unlike I've had before.

So I will continue to google and privately test.

[Bambini83 in reply to MrsButler]

Hi Mrs Butler, so sorry you’re going through this too. It’s so demoralising when people keep dismissing your symptoms isn’t it. They just jump straight to anxiety and like you say assume you’ve just googled the list of symptoms. I hope you get sorted very soon.

[MrsButler in reply to Bambini83]

Do update us on the private Endo. I'm northwest too so would be interested to know.

My biopsy was clear so I just go back in 6 months to check it again.

[Bambini83 in reply to MrsButler]

Of course, will do 👍🏻 I’m not sure I’m allowed to say consultant name on here but I can private message you after I’ve seen them if you like? It’s a zoom consultation as can’t be seen face to face at the moment. I’m booked for end of next month.

[MrsButler in reply to Bambini83]

That's great, thanks