Thyroid nodule thy3a

[isaxx]

I have multiple thyroid nodules, have had a number of ultrasounds and FNAs. The solid nodule of 8mm has come out once as non diagnostic and twice as Thy3a 'atypical cells of unspecified significance'. Has anyone else had this result repeatedly? I've been advised to just monitor and come back in a year. That seems like a long time to wait for next monitoring given the risk being about 25% with this result. Any experiences of this would be welcome.

Hi,
I haven't had the exact experience you've had, but had a thyroid nodule scanned last spring which was graded a 3 due to being 3cms. I then had a biopsy which came back as 'indeterminate' and due to this and the size the endocrine surgeons wanted to remove it. I had surgery to remove that half of my thyroid last year. It wasn't cancer but was atypical and they are scanning my thyroid every year to check for any further nodules.
I think because yours is so small and doesn't sound as if it is growing then there is little risk in just monitoring? Would you like it removing? Have you asked for surgery? I was referred to an endocrine surgeon rather than endocrinologist and she was keen on the surgery route, whereas the radiographer who did my initial scan just recommended 6-monthly rescans.

Thanks for replying! Great to hear yours wasn't cancer. Reassuring that indeterminate does not necessarily mean it will be malignant. Did they explain to you what atypical means? I find these kinds of terms frustratingly vague. To answer your question, I do not want it removed if it is not necessary. I am just concerned that waiting a year to scan again might be too long and then find that it was bad after all and has maybe spread by then. It is small, yes, but I have a history of radiation to the neck 20 years ago which makes me a bit jumpy. The radiologist seemed quite casual about waiting that long despite saying the risk of malignancy was about 25%. The consultant was just vague. So I'm left trying to get a sense of other people's experiences with such indeterminacy.

It's so tricky being left in limbo, but I understand your hesitancy about getting it removed if unnecessary.
I tried to push them several times on the 'indeterminate/atypical/unknown malignant potential' phrases that I came across with the experience, but with little success! Two consultants have told me that it just means it wasn't typical cells in the thyroid nodule, but it wasn't cancer. One said that it might be that it could turn malignant in the future, another said that often things with the thyroid can be difficult to classify, so I'm trying not to think too much about it!
I did a lot of reading about thyroid nodules at the time and found several medical papers which suggested that we are too keen to remove nodules in this country, when they are mostly benign and very slow growing, so monitoring is recommended. Could you perhaps request a re-scan in 6 months, rather than waiting a full year if it will put your mind at ease?

I had a thyroid nodule which was detected in my mid twenties, scanned and found to be an overgrowth of thyroid cells (ie benign) - They said it would be monitored but noone mentioned it again! By my early thirties, I'd had two children and decided to get it re-checked - the next scan revealed it had changed, so a needle biopsy was done, which was inconclusive. They recommended a partial thyroidectomy, which to me seemed wise - didn't want to risk it with having children. The nodule was tested after removal and it turned out to be cancer after all. My surgeon says that my type of thyroid cancer tends to grow slowly and is more common in older people, who 'die with it, rather than from it' - in younger people though, it's taken more seriously with more aggressive treatment. I managed to avoid radioactive iodine treatment, take medication and am monitored by my GP after being discharged by the hospital (am past 10 year point now).
I think as long as the nodule is closely monitored for changes, that's your main line of defense... being an advocate for yourself basically. Good luck!

@isaxx sorry, meant to say - I'd be asking for a bit more information regarding the phrase 'atypical cells of unspecified significance'.

With an inconclusive result after a FNA, a partial thyroidectomy was recommended for me - IMO 25% is pretty significant! There's no harm in asking more questions and either seeking reassurance/clarity, or perhaps a more pro-active treatment plan...

I had a nodule and several inconclusive biopsies. In the end they removed half my thyroid as they said the fact had 1 singular nodule was the biggest indicator it could be cancer. Apparently, multiple nodules rarely turn out out to he cancerous.

Mine was cancerous and 9 months later whilst in clinic they discovered another new single nodule on the other side of my thyroid, they'd left in. I had that removed and it turned out to be cancer too.

I had RAI treatment too after the second incident.

Almost upto 5 years all clear now.

Obviously I'm glad I had mine out as it was cancer but its not always as plain sailing as just take a tablet and all is OK forever afterwards, which is how it is sold by some surgeons/people.

My experience is I felt awful after my hemithyroidectomy. Really horrendous. No matter what they did with my levothyroxine I was a mess. No temperature control, shakes, brain fog, 22lbs weight gain in 9 months despite following the exact same weightloss plan I'd followed 18 months before diagnosis very successfully, heart palpitations, hair loss, nails falling off..... the list is endless.

As soon as I had the rest of my thyroid wasvwhipped out I felt human again. I've only needed my thyroxine tweaked once in 5 years. I can only assume my remaining thyroid was stopping and starting or something making me under and over medicated in continuous rounds.

I had a problem the first year after with calcium levels. Something to do with the remaining parathyroid glands. I think they may have been disturbed during the thyroid removal. I had to take a calcium drink twice daily for a few months but eventually my calcium levels sorted themselves out.

I now just have bloods done 2 x a year to check thyroid levels OK.

@MatHancockLovesMyTits - I also had low calcium for a while, and it took a while to feel 'normal' - I felt crap before my partial thyroidectomy though - weakness, shakiness and brain fog, so being on the higher levothyroxine after the op seemed to sort out what I assume now was undiagnosed hypothyroidism.

Thanks everyone for your experiences. Sorry to hear it can be difficult to get the hormone levels right.

I think what I am taking from this is that I should at the very least request more frequent monitoring. Leaving me hanging for a year seems a bit much. Can I ask you all how big your nodules were when they were found/removed?

Interesting to hear about the shaking an brain fog as signs of hypothyroidism. I have both of those symptoms but was told they had nothing to do with my thyroid as my levels are normal apparently. I have been therefore putting those symptoms down to perimenopause (I am 46). Who knows. There seems to be a lot of guessing involved.

Can I ask about those of you who got an inconclusive initial biopsy (or repeated inconclusive results). Were they a Thy3 or a Thy 4? And, if a Thy3, were they a Thy3a or Thy3f?

I'm sorry I cannot recall the size of my nodules.

I'm late 40s and getting nowhere with a few vague symptoms that could be down to either thyroid levels or menopause. The sad fact is the thyroid impacts probably every other function in your body. I've learnt over the past 5 years that the thyroid gets blamed for everything before they'll consider it being an actual separate issue.

@isaxx - Can't remember exactly how big my nodule was but I think it was between 2-3cm... It was smaller when first detected though.

Also not sure about whether it was thy3 or thy4 (I don't remember being told), but reading about those classifications online, it's most likely mine was Thy3f, according to the descriptions.

I had muscle weakness, shakiness and brain fog for years before my op - my thyroid levels were always 'normal' but I had a goitre and a nodule, so clearly, it wasn't functioning properly. These symptoms went away once my levothyroxine levels were high enough.

@isaxx - I have had a 3a reading, and was eventually discharged with no follow up. My nodule is large, 3cm, and mainly cystic. It has never had any suspicious US features, but has been biopsied a few times due to its size. I think I've had about 5FNAs in total - all of them inconclusive Thy1c, except for the single 3a reading. I've been reassured by my consultant but I totally agree with you that the 3a reading is frustratingly unclear - I still don't understand what it means! Like you, I'm very keen to keep my thyroid. Why was yours FNA'd in the first place, given how small it is? Was it showing any suspicious features on the ultrasound?

@sunnysideup05 Yes, it was FNAd because of one suspicious feature - it is solid rather than fluid filled. Also I have a history of radiation to the neck 20 years ago. It does not have any other suspicious US features apparently (it does not have irregular margins or calcifications, etc. but is solid whereas my other nodules are fluid filled). But now I have these repeated Thy3a results and don't know what to think of them. It is frustrating. Thanks for your experience and pleased to hear that your consultant is not concerned about that reading. It feels however like it is easy for them to discharge someone or to say 'just wait and see' or 'come back in a year' and move on to their next job. Not so easy to be left hanging, particularly when they throw around percentages. It seems to be a game of probabilities. But each of us does not feel like just a number.

@isaxx - 3a readings should be discussed at the Thyroid MDT, do you know whether yours was? Mine has been a couple of times which is a bit more reassuring. An interdisciplinary team looks at the scans and the biopsy report and make recommendations based on that. One thing I did was to kind of refuse to be discharged - I insist on US scans as follow up as I just feel weird about having a 3a reading and not having it followed it up at all. I agree that it's a deeply frustrating and anxiety-inducing situation.

@isaxx just curious what your results were in the end? Did you have the surgery?

@Sama29 I had surgery in the end this year. All clear though now dealing with subclinical hypothyrodism due to loss of half of my thyroid. The surgery itself was very straightforward though.