3 years ago (oc,t 2018) I had half my thyroid removed because I had a single very large toxic nodule causing hyperthyroidism. (I did have a 2mm "echo poor" nodule on the other side but was told it wasn't significant.) I had been on meds since 2015 and hadn't been able to stop them. Everything was fine after surgery, and I stopped meds and dismissed from my consultant.
The last few months I've been very unwell, I have been horribly shaky, fast heart rate, terrible anxiety , itchy, unable to sleep, and finally this week swollen ankles and legs. I finally got my thyroid checked,
Tsh 0.02 (0.35 - 5.50)
T4 63.4 (7.0 - 17.0)
T3 19.9 (3.5 - 6.5)
So at least I know why I'm so unwell. My remaining thyroid hurts and is swollen.
I wasn't aware a toxic nodule could return? And I don't know what to do now, I'm still really unwell, my gp has me only 20mg of carbi, last time i needed 100mg ptu... just to get it under control so I doubt it's going to be enough, and I will have to wait for my referral to see anyone. But I don't want surgery again but I'm also not sure i want RAI. And I don't want to stay on these meds for life. Help!
Written by
happyp
To view profiles and participate in discussions please or .
Hi happyp, it will depend on what is found to be the cause of your current hyperthyroidism, but if is confirmed to be another toxic nodule... you may want to find out about a third option of treatment called Radio Frequency Ablation. There have been a few posts discussing it recently, it's only done at one or two hospitals, but some have had referrals to have it done there.
I've done a search of posts on it ...so you may find something here healthunlocked.com/search/p... . but the search facility is a bit rubbish .. someone will no doubt be able to point you to the most recent posts about it when they see your post.
First you need to confirm the cause. It may be a new toxic nodule - but those levels are quite high. Nodules tend to build gradually.
You should have TSI or TRab levels measured to rule out autoimmune Graves and a scan to detect nodule. I had an uptake scan to confirm my hyper nodule, as I was negative for autoimmune.
See how you levels react to carbimazole then adjust dose, this should be 6 weekly until stable.
RFA is a potential option for benign nodules. If the swelling is extended eg behind collar bone this would exclude the treatment. Larger nodules/swelling need repeated treatments. It can also be performed on multiple nodules.
2 NHS hospitals preform the procedure but specialist do not routinely refer from outside areas. Others have reported being told, there’s not funding stream in place for it. Or as nodule was on back of thyroid so not a possible treatment - All nonsense.
I have heard back from others who have successfully battled for referral after providing the information themselves.
Ill include the information I collected previously. I believe I would be a candidate but don’t have means to travel for assessment, procedure & follow up so haven’t pressed for referral, I’ve been carbimazole for 3 years for solitary 5cm toxic nodule.
Most who have posted about having the procedure (links below) have had successful outcome. I know of a poster who had adverse reaction to the way the local anaesthetic was administered. Complications are fewer compared to surgery although the preservation of thyroid function on balance is far better with RFA.
Thank you for all of this. I'm in Wales, I wonder if i have any chance of being referred to England. They absolutely hate doing that.I only managed it once and that was because my mother worked in that department.
My numbers really are shockingly high, last time it was just a little over on my t3 and borderline t4. This time it was weird. In Feb last year tsh was 0.6 and then 1.14 in May, both time my t4 was normal, but on the higher end at 19 and 20 (upper end 22).
I didnt get an uptake scan last time as i was nursing my daughter. But it would be weird if it was graves now. Also despite those numbers I am gaining weight rapidly, just like last time.
What is their plan for you then? They told me they don't like people on the anti thyroid meds forever. Is your nodule uncomfortable? I dont like the thought of surgery it triggered my connective tissue disease, and rai has cancer risks and side effects. Its so ridiculous to be here again 🙄
Research your local hospitals they may be a center there available near you.
When I was diagnosed my FT4 was only just above range FT3 nearer double and I later looked through old records. I was hoping to see what my normal might be but I had only ever had 1 previous thyroid check and I had abnormal levels 4 years before.
I read about 10% of hypers do gain weight. I did as I had uncontrollable appetite and zero energy.
My nodule is not very noticeable and doesn’t cause pain, I was having some slight swallowing issues but since taking carbimazole is been ok.
I was offered RAI at first appointment, I’m a carer so I was hard to find a way to isolate. Then covid made everyone isolate. After that the specialist said she didn’t want me on her books unless I had treatment soon. So discharged me to GP.
It’s the cost of monitoring someone on anti thyroid medication hospitals don’t like. Medics view hypothyroid as easy to treat.
Once Im organised for RAI I’m to be re referred.
My plan is long term carbimazole which isn’t ideal but preferable over RAI or surgery. I’m aware there are some risks with carbimazole but they are the same today as when commencing the medication. The risk doesn’t accumulate with use.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Struggling after total thyroidectomy 3 years ago and not feeling great since
RFA treatment for Toxic nodular Goitre 
Hyperthyroidism from medication after total thyroidectomy 
toxic nodule hyperthyroidism & RAI treatment 
Hemi Thyroidectomy- 
