Advice on avoiding RAI for Graves / Hyperthyroidism

[GhanaBoy]

Hi - first time posting here. It would be great if there was any advice to avoid Radioactive Iodine treatment for my thyroid as I'm aware this does not solve the underlying Autoimmune issue and I'm not keen on this at all.

2013 - Diagnosed with Thyrotoxic Graves Disease by GP.

2014 - Diagnosed with Thyroid Eye Disease.

2015 - Left eye orbital decompression surgery.

2017 - Relapse after being in remission.

2017 - Oculoplastic surgery on right eye.

2019 - Relapse

2024 - After remission for 5 years and changing up diet and lifestyle, I consumed too much sea moss (high iodine content) and relapsed. Endo put me on 15mg carbimazole and 30 mg propranolol.

December 2024 blood work:

T3 - 15.5 pmol/L (4.2-7.1)

T4 - 37.7 pmol/L (8-18)

TSH - <0.01 mIU/L (0.27-4.2)

2025 - A few days before my next bloods, I ran out of carbimazole and these were the results:

February 2025 blood work:

T3 - 22.0 pmol/L (4.2-7.1)

T4 - 40.7 pmol/L (8-18)

TSH - <0.01 mIU/L (0.27-4.2)

Endo upped my meds to 25mg Carbimazole and 40-80mg Propranolol . End of February, I did a colon flush out and changed to an autoimmune paleo diet for 30 days. Also took supplements: L-Carnitine, Selenium, Iron, Magnesium and teas from herbs: Motherwort, Lemon Balm.

Most recent bloods show normal results with suppressed TSH.

March 2025 blood work:

T3 - 6.9 pmol/L (4.2-7.1)

T4 - 9.9 pmol/L (8-18)

TSH - <0.01 mIU/L (0.27-4.2)

Endo suggested by May to keep levels normal before considering RAI. Recent ultrasound shows no definitive focal nodules, but enlarged thyroid gland - likely thyroiditis.

I want to know what consider doing to avoid RAI. Is there any point testing for Thyroid Antibodies after many relapses? Just some advice please if possible.

[pennyannie]

Hello GhanaBoy and welcome to the forum :

I'm presuming you were diagnosed with Graves Disease at some point in time and so sorry you have been dealing with this Auto Immune disease for so many years - you must feel really drained with it all.

Considering you already have had decompression surgery and other issues with your eyes RAI should not even be suggested as this treatment is known to exacerbate and or cause further eye issues.

I detail below some research you might like to share with your endocrinologist :-

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

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

I had RAI thyroid ablation for Graves back in 2005 and wish I knew then what I know now -

If well on the Anti Thyroid drug there is no reason why you can't stay on it long term and it is becoming a treatment option in its own right - and not just a stop gap to definitive treatment.

The NHS can't refuse not to treat you - but they may just transfer you back out into primary care for your doctor to monitor you - and many people are on the AT drug longer term.

A thyroidectomy would be a much cleaner and more precise treatment option - though appreciate it feels like being between a rock and a hard place - as no one wants to ingest a toxic substance nor have their throat slit open.

RAI is a toxic substance that slowly burns out your thyroid in situ - and known to be taken up, to a lesser extent, by other organs and glands in the body and it is now known that there is an increased risk of cancer to breast and small bowel.

Personally speaking I do not understand why RAI thyroid ablation for an AI disease is still offered in what we understand to be a health care setting.

Living without a thyroid has its own set of issues and not the ' walk in the park ' some mainstream medical think it is - and the treatment for Primary Hypothyroidism is far from straight forward.

You might like to read around on Elaine More's books and website - Graves is a poorly understood and badly treated AI disease and we really need to do some research ourselves as mainstream medical have no real answers and just removing the thyroid is a very simplistic easy resolve for the medics.

web.archive.org/web/2024122...

rcpe.ac.uk/sites/default/fi... - just go to page 3 top left hand side paragraph regarding treatment with an AT drug in preference to definitive treatment.

[GhanaBoy in reply to pennyannie]

Thank you for all this information pennyannie. I will take a look at these resources and try to get a deeper and clearer understanding of tackling AI in the right manner.

[pennyannie in reply to GhanaBoy]

I'm not sure about tackling AI the right way - I think it more about knowing what treatment options there are and understanding your own AI triggers -

It is essential that you first get tested and have a diagnosis of what you are dealing with -

To be offered RAI - I am presuming you have a diagnosis of Graves Disease but you do need an antibody blood test to confirm what exactly is going on and what you are suffering with.

[GhanaBoy in reply to pennyannie]

Yes wrong choice of wording used earlier by me - Understanding AI triggers is correct. I will look into these antibody blood tests for confirmation. Thank you so much for your help.

[PurpleNails Administrator]

What thyroid antibodies have you had tested?

Thyroid Peroxidase (TPO)

Thyroglobulin (Tg or TGab )

Thyroid Stimulating Immunoglobulin (TSI)

TSH receptor antibodies (TRAb)

Have you been diagnosed with Graves, confirmed with positive TSI or TRab?

RAI should be not be selected if eye disease is active & is known to worsen or trigger new occurrences of TED (thyroid eye disease). Sometimes steroid cover is given same time as treatment.

It’s important to control high thyroid levels.

Your recent results show low FT4 & high FT3, so your levels aren’t very balanced. Has option of “block & replace” been suggested to help even out levels.

Higher carbimazole to fully block function, but replacement levo (T4) to restore thyroid levels.

You can stay on carbimazole for longer if you feel rushed into deciding definitive treatment. Drs imply carbimazole is limited to 18 months, or if you relapse your are more likely to be hyper again, but this is recommended protocol.

If well on carbimazole, delay. There is also option of surgery.

[GhanaBoy in reply to PurpleNails]

In all my years of doing blood work, I have never been tested for these antibodies ... is there anywhere you can suggest me doing these as I don't think they come under the NHS? Will these results confirm graves or any other conditions?

I will speak to the GP tomorrow about block & replace also to even out levels. Thank you

[PurpleNails Administrator in reply to GhanaBoy]

NHS GP can test TPO & TG. Sometimes labs add TG if TPO present. Sometimes GP say they can’t test TSI / TRab but if they have a patient with hyper levels you should be referred to a specialist endocrinologist & they should be testing TRab or TSI.

There are private blood testing options. From basic thyroid function to packs including function, key nutrients (folate, ferritin b12 & vitamin D) CRP Plus TPO & TG antibodies.

This page list companies, some have discounts available. You order online, sample taken by DIY fingerprick at home. Or extra fee for venous draw. Return by post.

thyroiduk.org/testing/priva...

Medicheck has separate TRab test, but it’s an expensive one & must be venous draw. (Test say “stimulating”, but Trab tests blocking, neutral & stimulating antibodies)

medichecks.com/products/tsh...

Best to press dr to test first.

There can be overlap with antibodies, but we do know Hashimoto’s or autoimmune thyroiditis have highest TPO & TG antibodies & TRAb & TSI have high TRab & TSI.

Drs go by levels or sometimes by TSH rather than the autoimmune aspect which can’t be treated.

You have history of eye eyes so doctors are treating as you have Graves, but if ultrasound indicates thyroiditis you need confirmation either way.

Your GP may be very unfamiliar with concept of block & replace & we do hear specialist saying they don’t offer if too. But when levels are disproportionate you may be having symptoms (both hyper & hypo) and this help can resolve the issue.

This leaflet explains about it.

btf-thyroid.org/antithyroid...

Block and replace: You continue taking CMZ, usually 20-40mg daily, or PTU, usually 200-400mg daily, to stop your thyroid gland producing thyroid hormone; and start taking levothyroxine (usually 50-150mcg daily) to replace the thyroid hormone your body would normally produce. Block and replace must not be used in pregnancy as the high doses of antithyroid drugs cross the placenta and can cause the baby to develop an underactive thyroid.

[GhanaBoy in reply to PurpleNails]

Sorry - I spoke with the GP earlier and asked about your recommended antibody test who reminded me that in December 2024 I had a TSH receptor antibody test which was 8.68 iu/L (Reference range 0 to 0.39) . Results say that these antibodies are associated with Graves' disease. I will still make an attempt to do these tests again.

[Omze]

I don't want o scare you , but the life u r spending now as hyperthyroidism is way better than what ull see after RAI atleast for half a decade , think of thyroidectomy

[Grandma49 in reply to Omze]

yes it’s absolutely true. RAI gave me an existence/half life. Weight gain, fatigue like a massive cloud bearing down on me. Depression, hallucinations, Brain fog. I long for my life pre RAI. The doctors insisted I got it done. They told me that I had a 33% chance of mortality if I chose to remain hyperthyroid.

[GhanaBoy in reply to Grandma49]

Sorry you’ve had to go through this and I hope better days are coming for you. Thank you for sharing, I’m definitely looking to see my options around this.

[GhanaBoy in reply to Omze]

Thanks for sharing, i’m really considering other options.