I hope you don’t mind such a stupid question but will getting rid of my thyroid get rid of Graves antibodies or will they still be active- maybe in remission and still able to cause havoc in the future. I really need this answered before I go ahead with tt. I am already hashimotoes and on levo over 20 yrs plus I have TED which is the main reason for asking
Many thanks for anyone willing to take a stab at it
I attended a talk on a similar topic. Unfortunately, I can't remember precise details. The impression I got was that a total thyroidectomy does reduce TRAB but this takes time, maybe a year or so. What I did remember very well is that it is important to get good care with TED during the period the antibody levels are high, they normally fall in time (but quicker with a thyroidectomy). Stay in touch with the endocrinologist managing your TED and put these questions to them. I would also join this group tedct.org.uk/ .
Thanks for that. I have a excellent eye surgeon that has got me this far.its my second round with ted and after 10 yrs we are on first name terms. There has been no endocrinologist looking out for me I’m afraid, just the eye team. It’s a pity the endocrine team have been so bad as this could maybe have been resolved years ago. Once again my thanks for taking the time to answer
Hello DeeD
I have Graves Disease and following RAI in 2005 I now have Graves Disease, thyroid eye disease and hypothyroidism.
Graves is an autoimmune disease, and as such, it's for life.
Your thyroid is the victim of an autoimmune attack.
The thyroid is such an important, major gland, when under attack, this can be said to be life threatening.
However living without a thyroid is no fun either, especially in the current climate where Levothyroxine - T4 - is the only treatment available in mainstream Nhs.
A fully functioning thyroid would give you approximately 100 T4 + 10 T3 daily and itseems to me both these available hormones should be on the prescription pad so that you can then work towards finding the hormone replacements that you need to give you back your health.
I read you have been with various issues over the years and fully understand you must be exhausted with all this. The lack of help offered by endocrinology astounds me, but the reality is I've also experienced similar, and am totally disillusioned and disappointed with the Nhs.
I think surgery is far better than RAI - obviously you've dodged that bullet, so good.
It's cleaner and somewhat more contained, removing all the thyroid and it's contents.
It might be wise to get a full thyroid panel to know where you are now, as maybe a target towards achieving once thyroid less. and also your vitamins and minerals need to be optimal to help you through this period.
I read that Graves is stress and anxiety related.
I read of people making diet and life style changes. I read of people going into remission.
Graves is said to present in a quarter of 1% of the population so hardly mainstream Nhs.
I read there are currently trials of a vaccine to " kill off " the Graves antibodies ?
Is it worth trying to hang on to your thyroid a little bit longer ?
In some respects removing the target - the thyroid - is just treating the symptoms and swopping one set of symptoms and medication for another set when you eventually become hypothyroid.
I am now self medicating with NDT which contains as near as possible the same make up of hormones that my thyroid produced, plus other bits and bobs ( sorry for the non medical language ) as yet not identified nor acknowledged by the Nhs.
Elaine Moore has this disease - there is a book - Graves Disease A Practical Guide - there is also a very comprehensive website USA based so medical protocol slightly different :
Barbara S Lougheed another Graves lady - her book - Tired Thyroid - from hyper to hypo to healing - debunks the TSH reading in Graves patients especially :
Dr Barry Durrant Peatfield - Your Thyroid and How to Keep it Healthy - this man is hypothyroid - very good book, you may not have a thyroid but you'll need to make up for all that it does and help your body to heal and get better.
Thank you pennyannie. I am already hashimotoes/hypothyroid and have been for 20 odd years so quite used to t4 mono and thankfully it’s suited me well . My ted is ongoing over the last 10 yrs.graves antibodies however have only been discovered in the last year and that’s why I’m asking, no way would my eye surgeon allow rai as it can make ted so much worse . I’m lucky that I have someone that cares about his patients. I have had a full thyroid panel every 6 weeks since June 18 so I’m well up on it, indeed I’m actually thyrotoxic at the moment so have halved my thyroxine and added beta blockers for the palpitations. Hopefully they will calm down. Many thanks for your reply🙂
Hey me again,
Yes - it's a sad state of affairs all round for the endocrinology thyroid specialisation.
The length of time you have been suffering with all this is simply unbelievable.
In my case since I showed no signs of eye symptoms at that point in time - I was told it was RAI or RAI :
The cheapest most cost effective treatment for the hospital but very rarely is it in any patients best interest, and considered barbaric in many European countries and the Far East.
As you say, you are lucky, you have someone who cares about his patients -
Buy it shouldn't be up to luck, should it ?
It does seem a lottery, and the odds for proper thyroid treatment seem to widen by the day.
Take good care, if I did, I didn't mean to teach you to suck eggs - just watch out for replacing that little bit of T3 your thyroid currently gives you !!
Not trying to teach me to suck eggs at all😁 and I meant my thanks . I’m afraid I’m just very impatient at the moment so my apologies if I appear to have been abrupt. I would love to get an answer from someone else in my position but I can’t seem to find anyone that’s” acquired “ graves after So many years of hashies. That’s all I hear from the endocrine side of things that I’m a very unusual case. Seriously though I just refuse to believe I’m unique . my thanks to you for putting up with me. X
You sound like me !
I'm not putting up with you and I've known and feel the frustration you are currently experiencing - if we were able to we would hug it out !
Take good care xx
antibodies 
Thyroid Antibodies - Brain Antibodies
Antibodies
Antibodies 
Antibodies but no HypoThyroidism
