over active thyroid due to nodules/ radiation therapy

[Emerald1953]

Hi 👋

I’m asking if anyone has had radioactive therapy for over active thyroid, i would appreciate any advice and your experience of this please.

I’ve just returned from thyroid clinic, after having had a scan and blood tests for overactive thyroid, I’ve been told I have numerous nodules on my thyroid,

I Was given lots of information by lovely nurse, about meds and radioactive therapy, I will be getting an appointment to discuss the radioactive therapy and nurse will send me more information. From what I gather I think the radioactive therapy will be the better choice.

Thanks in advance Joy

[pennyannie]

Hello Emerald :

I detail below the lastest research we have on both for the drugs generally prescribed and the treatment therapy of RAI thyroid ablation :

pubmed.ncbi.nlm.nih.gov/338...

ncbi.nlm.nih.gov/pubmed/306...

I believe for nodules there is also the most minimal invasive treatment option of Radiofrequency Aspiration ?

Are you currently on Anti Thyroid drugs - either Carbimazole or Propylthiouracil - and are these working for you and the ' hyper type ' symptoms relieved ?

I have experience of these first two treatment options and I would recommend staying on the Anti Thyroid drug treatment.

I do not believe Radio Active Iodine thyroid ' therapy ' should even be offered in what is presumed to be a health care setting - please ask about the longer term side effects that may not yet have found their way into the British Thyroid Federation leaflets.

[Emerald1953 in reply to pennyannie]

Hi pennieannie,

Thank you for your reply.

I’ve not been on any anti thyroid meds, but I will be getting a prescription soon from GP, a low dose 5mg, while I wait for appointment to talk about and make decision about the radioactive therapy,

I must admit the information you sent me has made me think twice about the therapy, although not the easiest info to understand.

Nurse I saw today said the therapy would shrink the nodules, so that no more would appear and enlarge, which sounded a sensible choice, maybe if nodules were to remain they, may turn cancerous?? Like I’ve read .

Obviously I have questions to ask when I have my appointment.

Did you mean that you have had the radioactive therapy? What treatment are you on? Can you elaborate please, I’m new to my diagnosis, and just hoping whatever treatment I decide to have will make me feel better.

Thanks again Joy

[pennyannie in reply to Emerald1953]

So it reads as though you have been prescribed a low dose of an Anti Thyroid drug -

this will semi-block your own thyroid hormone production and hopefully relieve symptoms being tolerated - and has to be a better option than invasive treatment.

If the nodules become cancerous - maybe then - you will need definitive treatment -

I don't believe the RAI can target just the nodules - it's a toxic substance that ultimately burns through your thyroid gland to disable it leaving you primary hypothyroid and needing daily thyroid hormone replacement medication for the rest of your life.

I have Graves Disease and initially prescribed Carbimazole and was very well on this AT drug but told it was too dangerous to stay on long term and that I was to have RAI thyroid ablation the following year in 2005.

I now self medicate and buy my own thyroid hormone replacement and run my own blood tests as the NHS has systematically withdrawn treatment options and blood test requirements since around 2010.

I really do not want to rethink and write my past health issues all over again -

if you press on the icon alongside my name it should take you to my Profile page where you can read my thyroid journey and everything I've written on this forum.

[PurpleNails Administrator]

Previous posts says sub clinical hyper?

So nodules over producing enough to raise FT4 & FT3? & Lower TSH but not suppress TSH.

Very low dose carbimazole likey improve this.

Your symptoms are more like hypo? - I have large solitary hyper nodule & also found symptoms more aligned to hypo (including weight gain)

BTA is aimed more at medical professions & they refer to the British thyroid foundation for patient leaflets. These tends to be in hospitals and I found drs like to say here’s a leaflet which explains "everything" rather than have a conversation.

This is probably why I've been sent me about 4 out of date versions in past & ignore me when I attempt to ask a more specific question.

btf-thyroid.org/treatment-o...

The leaflet does mention -" extremely small excess risk of cancer from treatment with radioactive iodine. For most patients the benefit of treating the overactive thyroid gland far outweighs the extremely low cancer risk"

Radioactive iodine is taken up by the thyroid, and destroys the cells in the thyroid gland. This has the effect of reducing the amount of thyroxine made by the thyroid gland and may also reduce the size of the gland. Unfortunately this doesn’t target just the nodule\s the healthy thyroid is partly destroyed too. It doesn’t always shrink the nodule, but it is very likely to cause hypothyroidism.

This is viewed as a better choice by doctors because monitoring & treatment of hyperthyroidism by specialist is more involved (& expensive) than hypothyroidism & replacement treatment by GPs.

I was referred for RAI after first appointment but delayed, now I’ve been taking carbimazole for 5 years & endo acknowledges long term carbimazole is not as controversial as it was previously. Most doctors will stick to what is recommended as standard & imply it’s not an option.

The alternative - less invasive treatment is radio frequency ablation. It’s not standard & not acknowledged if outside areas where there is a hospital which ofters the procedure.

This post explains further. (RFA information)

healthunlocked.com/thyroidu...