Thyroid nodule - questions for consultant

[DitheringDolly]

I know there are some thyroid experts here on Mumsnet - I would be really grateful for help on forming my questions for my appointment next week.
I found a neck lump last summer. GP arranged blood tests - he said the results showed I was at risk of an over or under active thyroid in the future.
He sent me for an ultrasound- they told me there were multiple nodules but they didn't look suspicious.
Then to the consultant who took a fluid sample from the largest nodule. She has said that although it wasn't malignant, there were some cells that suggested it might be a problem in the future and she would normally recommend removal. However those first blood test results showed anti bodies and hence it would not be any point in removing the nodule. She then took more fluid and sent me for more blood tests.
I have been reading up on thyroid problems and I can see what might be the treatment for these two issues separately but not together!

I also feel completely well and have not had any thyroid associated problems - apart from indigestion since shortly before I found the lump.

Hence I am a bit of a loss as to what questions to ask at my next appointment. Can anyone advise me please?

Points I'd want to bring up include-
Are the nodules across the whole gland or in just one lobe?(you know how it's shaped like a butterfly with 2 lobes)
Are they wanting to take out just the nodules or the whole gland? Cos that obviously affects whether you continue producing thyroxine or whether you'll need to take it as tablets.
I'm not sure about the comment you make about not needing the nodules removed because you have antibodies. It might indeed be 2 separate issues so, if your actual hormone levels are good then the antibodies might be nothing more than a sign, as you said.
Then it would be the nodules. I'd want to ask, if you don't have them removed just now, what kind of checks\monitoring would they recommend? If you have them removed now, again what kind of follow up will be done?
Another thing might be the appearance of your neck. Are the nodules visible? If so you might prefer to have them removed.

I don't know if that's helpful. You might already know some of the answers. It's quite hard thinking of questions for someone else because I'm not sure what's been said already.

Thank you - that's really helpful. I had tried to find out last time if these issues were related or separate but was told to wait until the second set of tests were done. That was only 3 weeks ago so I am panicking about having been called back so soon

Okay. They will have more information at least, especially on the separate or connected question. It could be either. It's good in a way they've called you back quickly. You'll know what's what sooner. There are lots of possibilities and lots of treatments.

Hey, just thought i'd comment with my experience

I have Graves Disease which is essentially an over active thyroid. I haven't noticed any nodules or anything so can't really comment on that, however I would be asking exactly what kind of antibodies had shown up as my thyroid was hurling out all different kinds at some ppints!

I would be very reassured by the fact you feel well in yourself too. Before my diagnosis I had lost 3 stone, had a resting heart rate of 156, and was extremely shaky and irate all of the time. If you feel well that's a good sign

As the above poster mentioned I would want to know exactly where the nodules were and how much/what kind of removals they were meaning. It does sound though like the nodules and the anti bodies might be two separate things so I would also want to clarify that.

One reassuring thing too is that there are many treatment options for thyroids now so ask them to go through all possible options and scenarios with you. I also found it helpful taking someone along to the appointment with me as it's an extra pair of ears etc.

Hope all goes well for you xx

Well, it wasn't a conclusive appointment....I do apparently have a high level of antibodies. Although the consultant didn't use the term, reading up afterwards, it would appear she thinks I have Hashimotos. But the nodule which I originally noticed does have cells floating around it - though they aren't malignant - so normally they remove that in case there is a malignancy. She did agree with me that it is unlikely that I have both problems ...so she is discussing with colleagues and will call me back.

So not much clearer. I don't though have any if the symptoms that are usually expected for thyroid problems, so it is all a bit strange to be in the NHS system when I am well.

Antibody figure (count, number, score?!) was 187 - does anyone know about these figures, is that high?

I had half my thyroid removed last year because of indeterminate needle biopsy results. They go on a scale from 1 to 5. I and 2 being benign, 4-5 not being. I was 3 and they usually remove those, along with the relevant bit of thyroid. As I only had half removed, there was no need for thyroxine as the other half makes up for it.

I've read some stuff since saying that some of these indeterminate cases don't go on to be malignant and that the surgery can be deemed unnecessary, so I would ask about the latest research results and whether that would apply to you. I decided to go with the MDT decision to remove mine and it was benign. I don't regret my decision though.

That is helpful to know, Rose, thank you. What was your recovery from the op like? Did you need much time off work or your normal activities?

To be completely honest, my recovery was longer than I thought. They wouldn't let me leave hospital until my drain had stopped draining, so that was 3 nights, and then a good week or more before I started to feel comfortable. I got bad headaches and was told that was to do with the way they hold your head during surgery and I also found sleeping a bit uncomfortable. I would say two weeks off work, depending on what you do.