Can anyone help or advise please?

[micwally]

Hi, I've had a swollen thyroid on one side for several months, the ultrasound scan I had in January found it to be about 40mm diameter. I have (as yet) had no symptoms thankfully & all blood tests came back ok so no hypo- or hyper- thyroidism.

I had a FNA biopsy in January too & it was found to be "inconclusive" but endocrine doc said there was a 'suspicious appearance T3' & it showed a "hyperplastic nodule with poss risk of follicular neoplasm THY3F". He said that means a 1 in 5 to 1 in 10 risk of malignancy & wanted to operate a 'lobectomy' immediately.

I declined. I told him I've decided to wait until another u/s scan in May to see if there are changes/enlargement or if I get any symptoms.

Since then I did some research & have been using iodine salt & taking kelp in case it has been caused by iodine deficiency. I have been on Femoston-conti hrt since I finished my menopause nearly a year ago (I'm 59)

I would be really grateful if anyone here can advise or has had similar experience. I am very keen not to have the operation unless I have to but equally dont want to leave it if there's a chance it could be cancer. It seems crazy not to be able to have any other tests/scans that could ascertain this without removing half my thyroid! I would be willing to have another biopsy if i thought it worthwhile.

[greygoose]

It's really not a good idea to take iodine without first getting tested to see if you need it. Excess iodine can cause all sorts of problems, including thyroid cancer. If I were you, I'd stop the iodine until you've had tests done.

[micwally in reply to greygoose]

Hi, thankyou for taking the time to reply. That is a concern what you are saying, can you tell me the name of the test you recommend please?

[greygoose in reply to micwally]

Not a specific test. There are several types of test for iodine, I believe. But, I think the best one is a non-loading-dose urine test. Is that correct, SeasideSusie ? Iodine is tricky stuff. It shouldn't be messed about with.

[SeasideSusie Remembering in reply to micwally]

Micwally

greygoose is correct, it's the non loading urine iodine test which Genova Diagnostics offer. Go to Genova's information on ThyroidUK's main website here (which also tells you how to order the test and receive the results) :

thyroiduk.org/help-and-supp...

Click on the link "Read the list of available tests" and you want END25 on page 3.

[micwally in reply to SeasideSusie]

Thankyou very much for this, I will check it out and apply for the test.

If anyone else has had similar experience to me or can advide on whether to go for the operation or not 'without proof' of malignancy, I would be very interested and grateful for comments, thanks.

[Nanaedake in reply to micwally]

Is surgical biopsy an option. It might be possible to get a conclusive result although it would likely mean a second surgery if it were positive.

[micwally in reply to Nanaedake]

Hi thankyou, I might go for another biopsy and Affirma test as advised. Cheers

[Poniesrfun]

When FNA results are "indeterminate" you can get genomic testing done. Genomic Sequencing is used to further classify thyroid nodules which are found to be “indeterminate” on biopsy. There are currently two tests available — Affirma and ThyroSeq.

– afirma.com/physicians/

– thyroseq.com/home

I have no idea if these are available in the UK or via NHS but worth asking about.

Did you obtain copies of both your ultrasound report and FNA pathology report?

And certainly agree that if, as you say, your thyroid test levels are "normal" you don't want to mess with additional iodine.

Were antibodies checked to rule out autoimmune thyroiditis?

Patti in AZ

[micwally in reply to Poniesrfun]

Thankyou for your helpful advice, I am looking in to the Affirma test which I have found st a clinic in Harley St, a lot of money no doubt but possibly worth it.

[Poniesrfun in reply to micwally]

Do check their site for patient assistance if NHS won't cover it.

[micwally]

Hi Thankyou for your reply & sorry you had cancer. That is sobering advice, I am planning to think very seriously about the op & I may be back to you for more research hope to dont mind!