Can Graves come back even after RAI ? - Thyroid UK

Thyroid UK
108,971 members126,560 posts

Can Graves come back even after RAI ?

Minimol
Minimol

I had RAI treatment 20 years ago and was rather thinking my thyrotoxicosis was over and done and all (!!) I have to deal with now is being Hypo as a result of the RAI but I read something at the weekend about a celeb (can’t remember who) also had RAI a long time ago and has had a resurgence of her Graves.

Does anyone know if a Graves antibody test even 20 years on might still show a positive result?

3 Replies
oldestnewest

Graves Disease is an autoimmune disease and as such it is for life.

I was told Graves was life threatening and by ablating my thyroid I would be better.

I drank the drink in 2005, and have been very ill these last 5 years.

Whether it be the Graves, the RAI, the TED, or the treatment of hypothyroidism within the Nhs or a combination of all four issues - I have my suspicions, but no one from within the Nhs has given me any help or support with my current health issues.

As I understand it, Nhs does not place much interest in the autoimmune aspect of thyroid illness as the treatment is the same, remove / ablate the gland - and the symptoms will go away - well if you still have a thyroid in situ, though ablated, where have the contents of this now shrivelled up gland gone. ?

Sorry, I digress, bit of a Graves Rage ! As to your question - Can Graves come back ? Well, it is an autoimmune disease and It never really went away !!!

I read it effects only 25% of 1% of the population, hence the poor understanding and treatment in mainstream Nhs.

I suppose you could ask to have a blood test for the relevant antibodies - though I've been refused blood test for T3,T4 and vitamins and minerals. Maybe I went wrong by having my eyebrows tattooed on, and look too well !

Graves is for life, and I suggest you take a look at the following :-

Elaine Moore Graves Disease A Practical Guide - this lady has the disease and went through RAI - there is also a very comprehensive website ( USA) protocols but very valid.

Minimol
Minimol
in reply to pennyannie

Thanks pennyannie I’m sorry to hear you’ve been suffering. When I ‘drank the drink’ I was thyrotoxic and alone. No help or advice then and even less since. It’s all about treating the sacred TSH number and stuff the underlying cause.

Wishing you well. X

pennyannie
pennyannie
in reply to Minimol

Yes, testing TSH alone if with Graves and after RAI is not appropriate.

Our feedback loop is now broken and this test not valid.

You might also like the following to read :-

From Hyper to Hypo to Healing by Barbara S Lougheed - she too went through Rai and has Graves - this book debunks the TSH blood test reading - ( USA )

Your Thyroid and How to Keep it Healthy by Dr Barry Durrant Peatfield is an excellent, common sense read of what we now need to be to try and get ourselves back on track since nobody else seems to have any idea.

I don't know of the article you mention, I wonder would this " celebrity status " person help us with some leverage in our issues within the mainstream Nhs.?

You may also like...