I’m just looking for some advice or other peoples experiences with treatment for toxic thyroid nodules.
I have just had a Radioiodine uptake scan which shows a large ‘hot’ nodule on left thyroid and possibly a small one on right. Trab and tpo antibody tests were negative. I have been having hyperthyroid symptoms for about a year.
I am awaiting my next consultant appt but at the last clinic he said he thought it would be a nodule and the treatment would be either Radioiodine or surgery. I have looked into both these options and can see that neither are a perfect solution. Does anyone have some advice or experience they can give me about which to choose and what to expect afterwards?
Many thanks
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Geolan
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Hi Geolan. I can't offer any advice really as I'm fairly new here myself. I also have multi nodules one of which is 3.5 cm I haven't got as far as you on investigations, seen a GP, an endocrinologist and now waiting to see ENT consultant.
Trying to find out as much as I can I have found using the 'search' bar on the top right of this page has brought up lots of posts from others in similar situations. Worth trying different words - toxic nodules - hyperthyroid nodules - radioiodine, etc -- hopefully you will finds loads of questions and answers that may help.
Really sorry I can't be much more help, but do keep posting on how you get on. best wishes.
Hi, thanks so much for your reply. I will try using the search bar. Trying to get myself as informed as possible before I go to next consultant appointment! All the best to you with your investigations too.
Hi. Hope you don't mind me asking but have you had a Fine Needle Biopsy yet? From what I've read that appears to be an important step to aid future treatment. Actually it is what I'm expecting the ENT consultant to recommend for my problem, but only guessing so far. I'd really like to ask more questions of you but don't want to be presumptious. I'm as lost as you regarding this best wishes, hope you find some answers.
Hi, I don’t mind it all, it’s reassuring to know from this forum that I’m not alone in feeling confused and worried about it all! No I haven’t had a biopsy just the uptake scan and bloods, I’ve got my next appt in jan hopefully, so will know more then. A lot of waiting! Did your endocrinologist refer you on to ENT?
I have been reading over last couple of days about radio frequency ablation, which seems to be a fairly new treatment for nodules but with fewer side effects, I am definitely going to ask consultant about that.
Crikey, I think we are all here because we are confused and worried, you are not alone some wonderful info on this site. Before coming here I had no idea how complicated and important the thyroid gland was.
Do I understand the radio frequency ablation will shrink/destroy the hot nodule (at the least will restrict its production)? Certainly something worth investigating if your consultant concurs.
The endo I saw (after a 5 month wait) suggested I try Carbimazole (which I am not taking, my decision) and has referred me to an ENT surgeon who I am seeing in Jan - though endo made it clear he has reservations about surgery.
Great to hear from you and truly I hope you keep posting on your progress. Best of luck.
Hi thought I would tell you my situation.I have a toxic multinodular goitre 3cm I believe.Had two FNA s had my local hospital then an uptake scan and I was offered 131 Rai treatment, didn't really like the idea. I did some research and UCLH in London and one or two other hospitals are doing this new treatment where you have local anesthetic and they insert needle with laser, might have to be done more than once.This is only if it is a non cancerous nodule and a healthy thyroid which unfortunately mine wasn't due to Hashimotos. Anyway I am waiting for surgery.I hope this helps.
Hi Chippy10, thanks for your post and best wishes to you with your surgery. This sounds like the same new treatment I have been looking at. I believe my graves test was negative, so maybe this new treatment is worth me pursuing a bit further. I am the same as you re RAI treatment, I really don’t like the idea of it, plus I have small children who I would have to be away from. I haven’t had a FNA so I’m guessing that would need to be done first. Thank you for sharing your situation, I am learning a lot from this group.
Hi,also meant to add.They didn't like the fact I refused the 131 treatment and was treated not with a great deal of respect I asked them to refer me to Simon Morley at UCLH. He was lovely.I believe they do it at Reading hospital also.Good luck.
Hi Geolan, this is a tad late as am new to this thread. I am in a similar position to you,but i had radio iodine on Friday to treat a toxic adenoma. So far no real side effects apart from a bit of metallic taste which has now faded and a bit of lethargy. I had a bit of a mild sicky feeling for the first two days, which has now passed...
I joined the forum in March after a TT for Graves and multinodular goiter. I just saw your post. What did you finally decide to do and how did it work out for you? I hope all is well and best wishes to you.
I answered Geolan in error - I did not have bladder problems before or after surgery but did have bowel issues during my adjustment to T4 and T3 post surgery. Hope this is helpful. Wishing you all the best.
Do you mean before or after surgery? I had many symptoms before surgery that included difficulty breathing, difficulty speaking, hair loss, skin rashes, palpitations, rapid pulse, feeling distracted and unable to focus. After surgery my symptoms were related to difficulties with T4 and T3 adjustment - many people on the forum experience these and mine were similar. Hope this helps! All the best.
Thankfully, I did not have any bladder problems prior to my thyroidectomy. However, I did have vowel issues as my dose of T4 and T3 was being adjusted post surgery. Wishing you the best of luck.
I have just been diagnosed with a singular toxic nodule hyperthyroidism
I’ve had 2 FNA
1st came back as U3 indeterminate Thy3a
The 2nd U2 benign
Also had a Nuclear Medicine scan
Which threw up the hot Toxic nodule
I have been given carbimozole & Diltizum for my racing heart
My surgeon has strongly advised again surgery and wants me to go down the RAI treatment
All this has happened within the last 5 months and got the final results Friday
So my head is spinning however I’m very relived it’s not cancer as they initially thought
Im really not sure about the RAI treatment as I don’t want to go Hypo and gain weight and other problems
I wanted the nodule removed and have a lobectomy
But so far been refused even though it was initially offered by a very offish cold ENT consultant
So now I’m even more not sure what’s best for me
My Endo is seeing me (well I say see me I’ve never met my endo F2F ) on the 9th Sept
As I have an up to date blood work on Friday next week
However I do feel a tad better some days more than others
I still have zero energy half way through the day and my heart still races
I’m just not sure what’s best for me I just wanted it removed but the fear of damaged vocal cords and bleeding is enough to put me off surgery, I just have this feeling that I should have it removed
I want my energy back and I want to be able to go to the gym run dance ect without the fear of a heart attack
Thanks for any advice or your stories this forum is really helping
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best wishes, hope you find some answers.
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