Increased antithyroglobulin levels post op

Hi Truffle mouse,

I had a total thyroidectomy March 2022. Found papillary carcinoma with metastasis in lymph nodes.  I’ve actually had issues with my care and treatment at hospital in general.  I do know that the higher levels you describe can indicate that there is cancer still there somewhere but at the same time you do still have half your thyroid so maybe something is going on there that may not be the cancer?

i am not a doctor or professional just thinking out loud. It is really hard not to be anxious, for me I like to focus my energy on something to keep me busy and keep google away, but I also feel more in control of myself when I have a look on dr Google as you call it. I like to know best case and worst case scenario so there are no surprises!

I am glad your hospital are doing more bloods and a scan. If you are still not happy after that just let them know.

sorry if I’ve not been much help

Hi Leanne!

Thank you so much for your lovely and thoughtful response. I’m so sorry to hear you’ve had such a rough time of it, I just hope you’re doing ok as can be.

What you’ve said makes total sense - I still have some thyroid left, so I probably shouldn’t panic just yet! And you’re spot on about Google - weirdly, I made a pact with myself a long time ago not to look up anything serious (because my family were going through so much), but this time for some reason I’m feeling a bit rattled! And you put it perfectly, it’s about control in a situation where there really is very little! Would also rather be prepared this time as have been floored by family health news before. Luckily my little boy keeps me very very busy (writing this took seven attempts over the space of an hour :)

I think I’ll call my Macmillan nurse tomorrow too and chat it over with her, or see a GP if she can’t help, just to fully understand the situation. My scan is just under a couple of weeks away, so would be good to be able to put it aside a little bit. But honestly your reply has really helped there too!

Thank you xxx

Hi @TruffleMouse sorry to hear you are having to go through further investigation but it is better that they keep an eye on you which they do when you have had a hemithyroidectomy from what I have read from other people.  I don't think you can have RAI treatment if you still have part of your Thyroid left so that will be why you haven't been offered any.  As the RAI kills off any thyroid cells, you don't want that if you have half of yours left as it will still be functioning hopefully.  The wait is the worse thing about this and you seem to have to wait for everything.  I had TT at the end of July 2022, and have just had RAI on the 21st Dec.  I had 60 lymph nodes removed and 14 were cancerous and also been told I have 2 tiny nodules in my lung, so fingers crossed the RAI will get rid of it, but I am also waiting, waiting now for my appointment with the Oncologist following the full body scan they give you after your RAI treatment to see if there is any uptake of the iodine and where it is in your body.  Apologies that I can't help you other than to say hope you get your scan and results quickly so that it can put your mind at rest if it turns out to be nothing to worry out.  Fingers crossed for you and I remember well trying to speak or write something with a toddler wanting attention, mine are 29 and 35 now so not needing quite as much attention, although still need some from time to time lol

Hi Petal66,

My goodness, what a lot you’re going through. I hope you’re recovering ok from your treatment and will keep everything crossed for your results. 

And thank you for your reply! Really helpful (especially the bit about kids needing you even when they’re adults - haha! Good to be prepared!). That makes so much sense re the RAI, wouldn’t want to kill off my remaining thyroid would they!

I had a bit of a public wobble today (awkward) - I think between parenting, working and googling (which I’ve stopped now), I hadn’t had time to actually acknowledge my emotions. So when I went for the blood test and actually had a few mins to myself, I ended up crying on the nurse about everything. Luckily she was AMAZING, and sadly had gone through so much herself. It’s hard to get your head around it all isn’t it, even speaking to people like you guys makes you realise how hard life can be for so many. I lost a v v close family member recently and think I’ve just tried to crack on as much as possible, especially when it comes to ongoing health problems. But I’m learning that’s not the way to do things… unless you want a very public meltdown! 

I then spoke to my Macmillan nurse who was fantastic but did basically confirm it could mean recurrence. Only time will tell. Almost feel better just hearing a professional be upfront about it, as weird as that sounds, because it’s less guesswork.

So for now it’s one step a time, as with everything in life, and maybe a good few hot chocolates in between! :)

Sending well wishes to you Petal66, I really hope all ok. And thank you again for the reply. Always been a bit nervous about posting on forums (something about feeling vulnerable / admitting feelings I guess?) but there’s truly something to be said for feeling less alone isn’t there!

Take care xx

So sorry to hear about your recent loss, and yes things do have a way of piling on and you must allow yourself to have a meltdown when you need one, don't bottle it up because it will come out later anyway and it might be worse.  I had one night in particular where I had one, cried and got cross with my hubby who I felt was shutting me up and not listening to my fears.  It turns out he was trying to deal with my diagnosis himself and we do forget that these things affect other people as well as ourselves.  After that I have taken things one step at a time and it does help and we talk more about things.  Good to hear your MacMillan Nurse helped you and it is lovely to have someone who you can offload to at times whether family, friends, forums or your MacMillan nurse.  Do whatever you have to and I am sure things will be fine x

It’s so true! In some ways it’s even worse for partners and loved ones, because there really isn’t much they can do at all. Hope you’re both doing ok and have the support you need.

I’ll try and remember to post an update here in a few weeks once I know more about what’s happening, just in case it helps someone else.

xx

Do you mean Thyroglobulin Antibodies? I'm not familiar with the term 'AG'. 

As long as you still have part of your thyroid, you will have measurable thyroglobulin and TG antibodies. 
If those antibodies are on the rise, it could be - as you mentioned - an autoimmune response.

If your thyroglobulin is the same but the antibodies are rising, I wouldn't be worrying about any kind of recurrence, but you may have to ask your doctors to ensure that your blood samples are sent to a lab that can remove/reduce the antibodies before doing the TG testing. High levels of antibodies can mask changes in the TG results.

Thank you so much barbaral , this is fantastic info and very well explained!

Yes, I meant TgAb, which I now know to be the correct term! And my nurse said my thyroglobulin is “slightly high”, but I didn’t get a number… so I think I’ll choose to hope it hasn’t risen worryingly for now and wait for tests. It really could be autoimmune as I feel so so achey and generally awful!

Thanks for response and for giving me hope it’s not a recurrence. 

xx