Anyone had Radioiodine whilst got mild TED with cover of steroids?

[BlueStrawbs]

Hi. Endo has recommended thyroidectomy for my Graves', saying RAI not an option as may worsen TED. However I've heard from BTF webinars that you CAN have RAI if you have TED, but with steroid protection. Has anyone actually done this please?

[pennyannie]

Hello BlueStrawbs and welcome to the forum :

There is nothing on your Profile page - if you care to share more information we can try and help you through this phase of immune system activity which is causing your thyroid to malfunction.

Graves is a poorly understood Auto Immune Disease for which there is no cure.

All the research I found - though several years ago now - suggested that anyone with any eye issues should not even be offered RAI as it will likely exacerbate symptoms :

The BTF leaflets I was given back in 2004 were not accurate then - nor I believe now - so I'm not sure - but I have no trust left in this organisation.

The most recent research is detailed under - please research from independent sources:-

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

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

The most rounded of all I researched for Graves - 10 years post RAI thyroid ablation and much more ill than I've ever been is that of Elaine Moore's books and website - which currently we need to access through the archives.

web.archive.org/web/2024120...

Living without a thyroid comes with its own set of challenges as medication is generally with just T4 monotherapy and should you not find your health and well being restored obtaining the other recognised treatment options on the NHS is not guaranteed with many of us forced to go private or self source and medicate for ourselves.

[BlueStrawbs in reply to pennyannie]

Thank you pennyannie 🙂Lots for me to look into. I've updated my profile. I've rated my Graves' as severe because my TRAbs were 73.6 when tested in 2023 which Endo says is"very very high". I came off Carbimazole in late 2024 per guidelines but immediately relapsed, so back on it while definitive treatment decided, taking TED into consideration.

[pennyannie in reply to BlueStrawbs]

Sorry but I can't learn very much from what your shared on your Profile page -

Can you please share your TSH - T3 and T4 at diagnosis and which Anti Thyroid drug you were prescribed - and what your latest TSH + T3 + T4 results are and the ranges and the dose of AT drug you are now taking ?

Shame your endo didn't run your antibodies again before suggesting you came off the Anti Thyroid medication - though, once triggered, Graves can wax and wane throughout your life.

There is likely a genetic pre-disposition as to why you have been diagnosed - maybe there is someone in your extended family a generation away from you with the thyroid health issue -

Graves can occur after a sudden shock to the system like a car accident or unexpected death of a loved one - or seems to come about ' simply out of the blue ' and with no 2 peoples journey with Graves the same it is poorly understood and badly treated in mainstream medical -

though we know that Graves tends to be triggered by stress and anxiety.

All the AT drug does is ' buy you time ' while we wait for your immune system to calm down again -

TRab can be stimulating or blocking and cause a roller coaster of symptoms without any of the fun and there can also be times within this first phase of immune system malfunction where there is relative calm as these 2 extremes of symptoms phase themselves each out - possible for a repeat performance - possibly if given enough time to burn each other out.

Which in effect is what this toxic substance - RAI does - burns out your thyroid in situ - and which is known to be taken up by other glands and organs in the body with a potential for cancer years later !!

Neither choice is good - ingest a toxic substance or have your throat slit open but at least surgery is cleaner and more precise if push comes to shove.

Are you being seen by a specialist ophthalmologist for the Thyroid Eye Disease ?

When metabolism runs too fast as in Hyper type symptoms or too slow as in Hypo type symptoms the body struggles to extract key nutrients through food no matter how well and clean you eat - and non optimal levels of ferritin, folate, B12 and vitamin D can compound your ill health further than necessary -

so please get these bloods run and if you care to share any blood tests results we can advise where best within the NHS ranges your levels should be sitting, as some NHS ranges too wide to even be sensible.

[Buddy195 Administrator]

Regarding your eyes…..I recommend you take a Selenium supplement, 200ug daily, as this has showed to help in mild/ moderate TED when taken in the first 6 months. Many take a maintenance dose of 100ug daily when the active phase of the condition has passed. Preservative free lubricating eye drops are important, such as HycoSan or Hyloforte. For light sensitivity wear sunglasses (even indoors if needed). If you have any eye pain, my TED ophthalmologist said to take ibuprofen (with food to protect your stomach). Also worth doing is using 2 pillows at night, to elevate your head. I took ongoing photos of my eyes (& kept in ‘hidden’ in my phone) as these were useful to discuss with Endo & ophthalmologist.

I received great advice and support from TEDct, so do get their information pack. They run a telephone advice line, hold regular webinars and have a Facebook group. TEDct helped me find a TED specialist ophthalmologist in my area.

[pennyannie in reply to Buddy195]

tedct.org.uk BlueStrawbs

[BlueStrawbs in reply to pennyannie]

Thank you both. I have added detail in My Story.

Eye tips 👍

[pennyannie in reply to BlueStrawbs]

Thank you for detailing your thyroid journey - sorry if it hurt - apart from it helping us understand where you are in all this - I hope it helped you and has been cathartic .

I was going to suggest Block & Replace when you next wrote as this treatment option is generally suggested when the eyes are involved as by totally blocking thyroid function and adding in a measured dose of T4 your thyroid hormones are more easily 'held ' at a stable level with less fluctuation and hopefully less eye volatility .

With B & R your endo is likely trying to maintain your T3 and T4 at around 50% through their ranges and steer a path where you are neither hyper nor hypo while we wait out this phase of antibody activity.

Graves generally only gets diagnosed when the immune system starts attacking the thyroid and or eyes - the raised antibodies in your blood stream get ' caught up ' on the fine hair like follicles of the TSH receptor sites within your body and pushes them down - causing a low suppressed TSH - which in turn pushes up your thyroid hormone production.

When diagnosed hypothyroid back in 2021 - were antibody blood tests run - did the T4 restore your thyroid function and did you find out where in the T3 and T4 ranges you felt best and with your health restored - as ideally that's where we need to try and get back to ?

It's interesting as I now realise that I've been undiagnosed hypo since a child and only got diagnosed Graves after a few years of caring for my mother after the death of her husband and only son and after being verbally abused and physically threatened by a man I employed as my assistant manager -

it seems something snaps and breaks when things get too much - and I know I'm guilty of bottling everything up and soldiering on - as if made of Teflon.

Interesting to also read in your last paragraph that there is a letter and mention of long term AT treatment - this is so encouraging as generally we read of the NHS looking for quick fixes.

I'm going to ' ping ' another forum member who went through similar with B & R as I was in the quick fix camp and had RAI back in 2005 - a treatment I deeply regret - as my eye issues and everything else developed after RAI -

If interested you can read anybody's profile - just press the icon alongside anything they write.

We can all read everything that is being written - so you have no need to keep repeating yourself - and we generally try and answer any questions within around 24 hours from first posting - any new information or questions deserves a new post so all forum members can try to help and support you and you need to reply within the post of person you are replying to as then they get an email telling them to come back -

You can also ' ping ' people by typing an @ directly before their user name, and a drop down list appears as you type the name offering a match - tap the match and it turns blue and will have alerted the other forum member to come -

The Alert button - on my laptop seems to be law unto itself and sometimes doesn't light up or turn off as it should - this could be ' just me ' :

     asiatic

     Buddy195

[BlueStrawbs in reply to pennyannie]

Thank you once again for all info, not least how to use this site😉Good point about at what level I felt best when hypo in 2021 & 2022.

From memory I think I was still napping in the afternoon for a while even when on Levothyroxine. I'll see if I can find that.

Else when I was steady on B&R in 2024 when hyper my T4 was around 14 - 15, and T3 around 4.5

[pennyannie]

Do you happen to have the ranges with these blood test results as ranges change Lab to Lab - I know - it's ridiculous - but that's where we are :