Hi, I was diagnose with TED at the beginning of the year, and after a recent orbit MRI I've been informed that I need a three month course of steroids given intravenously once a week. Having discussed the possible side effects I'm not too happy about this, but the consultant was concerned about eventual scarring, or indeed loss of sight. He mentioned surgery at some point but didn't sound optimistic about the outcome.
I'm so glad to have a team of 'experts' that I can go to in times like these, and I really would appreciate any input.
Thank you very much!
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Lynndeb
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We all balance benefit v risk differently so I am not saying you should refuse steroids only sharing my story. I too was offered steroid infusions which I declined as I worried about possible side effects. For me this was the correct decision as a few months later my TED reached the plateau stage. I too had an MRI and was being closely monitored every 2 months by an opthalmologist with an interest in TED. I therefore felt that if the swelling was starting to impact on my optic nerve it would be quickly noticed and acted on. To avoid scarring I was prescribed IKERVIS eye drops for 2 years which really helped. After 4 years I am in recovery but left with double vision corrected with a prism. If I go even slightly hypo they can flare up again. I have also declined corrective surgery as being retired now I can tolerate the double vision.
I do understand, however I really appreciate you sharing your TED story. I have another Ophthalmology appointment at the end of the month, when I know they will encourage me to begin treatment, so it really pays to be more informed beforehand. Like you, I am very concerned about the possible side effect, so I will tread carefully. How lucky for you that you were treated by someone with an interest in TED, it makes all the difference. Thank you very much for taking the time.
I just want to send you a hug - my TED only developed after having my thyroid ablated with RAI treatment - ( a known side effect ) but no one told me that back in 2005.
It might be worth asking Elaine Moore as she has a wealth of knowledge on Graves Disease and know she has written a book on just this subject - having had a quick look at your back story I see you have been given the link previously.
I deeply regret this RAI treatment, and trust you will not be considered a suitable candidate and would suggest if you can manage long term on the anti thyroid medication, given time, your own immune system may calm down and you may find remission.
I now self medicate and buy my own full spectrum thyroid hormone replacement and take care of myself as the NHS refused to support me in my efforts to recover my health when I became unwell in around 2014/15.
Firstly, I'm very sorry to learn that you were/are not being looked after, and that you now have to take care of yourself, it's so wrong on so many levels. I really do hope that you are keeping well now? How can they sleep at night!
I have a telephone appointment with the endo in a couple of weeks and I'm just waiting for them to suggest ablation/removal. Thanks to good people like yourself, I am becoming more informed and will stand my ground.
Yes she was recommended so I quickly bought her TED book, and it now has lots of highlighting and turned down pages! I think it mentions in my history that I believe my Graves was triggered during a very stressful period, and she says "stress is known to be the number one trigger for Graves' disease and is known to worsen symptoms in patients with GO" and a few months before I was diagnosed with TED I'd experienced another hugely stressful situation, which is ongoing. Character building?
Considering you have Graves Ophthalmology you must not have RAI as it will exacerbate your symptoms.
The conversation may be one of the thyroidectomy :
Professor A Toft the eminent endocrinologist in his retirement year from the NHS wrote a very interesting article which basically sums up the situation we all find ourselves in, if with a thyroid health issue, and seeking NHS treatment and help.
The whole article is on this website somewhere - entitled - Thyroid Hormone Replacement - A Counterblast to Guidelines - published in the December 2017 edition of the Journal of the Royal College of Physicians Edinburgh :
From the last page and I quote :- " I am so concerned about the state of advice on the management of primary hypothyroidism that I am increasingly reluctant to suggest ablative therapy with iodine 1-31 or surgery in patients with Grave's disease irrespective of age or number of recurrences of hyperthyroidism ".
Thank you so much for this information. I have heard many people on HU refer to Professor Toft, and I'll find this and use it as reference should RAI be raised. I just feel so lucky to have kind and knowledgeable people to go to...
It's on here somewhere, but I'll glaze over if you suggest I cut and paste or give you a link ???
Well he has a bit of a reputation for changing his mind and he was instrumental in some of the guidelines that the NHS worked to :
So in a way I think it brave to have changed his mind and acknowledged the problem we face, especially when being in such an influential position, and to publish this scathing article, but then it was in his final years within this organisation, and his career path behind him.
This article didn't secure me a trial of T3 but sums up where we all end up with or without thyroid, and unwell, and forced to self medicate because of guidelines that are not fit for purpose.
(Second message) I've just read your bio, and I have no words to express how shocked and sorry I am that you had such a terrible journey to where you are now. xx
Well I read of your journey and find it so interesting that you struggled along with hypothyroid symptoms for years, without, or unable to get a diagnosis and eventually self medicated with NDT.
I think had I known about NDT I too would have given it a go, as I too was living with debilitating symptoms and no diagnosis and just had anti depressants and pain killers thrown at me over a period years.
My Graves journey officially started after having been physically stood over, threatened and verbally abused by a man I employed as my assistant manager and 3/4 months later I was diagnosed Graves, and thought, at last a diagnosis of something, but certainly not hyperthyroidism as I was desperately exhausted.
Looking back Graves had been causing havoc within my body for many years and yes, the stress of this unprovoked but planned attack by a work colleague was my tipping point.
Thank you for your concern, and yes, I am now much better, looking after myself and taking NDT and I just run a yearly private blood test to check where my vitamins and minerals sit.
I can't say for sure but I think when my ME doctor suggest I try NDT, that actually might have been when the Graves was activated, losing a stone in 3 months and then my hair began to shed, all due to a huge and very personal chronic stress at the time, which lasted for 5 years and despite me suggesting to my GP that I had a thyroid problem they said NO, until it was caught in A&E blood tests. Then just over a year ago, the individual causing the stress caused another huge stressor, which I'm still trying to recover from, and of course I now have TED.
That's shocking that a someone should do that to you. Was he still there after you became so ill? Probably not if you showed him the door, but then you wouldn't know if there would have been retribution. Is he aware of your health? How do you handle knowing that someone's behaviour had such an impact on your health? Did you kill him
I really am glad to learn that you are so much better, but again, having to look after yourself. Sending you a big hug x
Well, I didn't put anything together until roughly 10 years after the RAI treatment as I was very ill and my doctor telling me I was a conundrum - I thought maybe the Graves has come back, purchased Elaine Moore's book and learnt that it never went away and my current symptoms were all listed in Elaine's book.
My doctor gave me no information on Graves, and the leaflets I was given didn't explain anything about the actual disease, and I was given two leaflets one on RAI treatment and the other on TED . The Carbimazole worked, and I was told at my very first hospital appointment that I was to have RAI the following year as AT drugs were too dangerous to stay on long term.
I was in a state of shock and going through disciplinary procedures with this man - my company weren't very supportive as there were no witnesses and on tendering my 3 month notice period was asked if I would stay 2 months longer as the actual unit was to be closed down - I thought I was doing the right thing and struggled on collapsing from the continued stress in the closing week - hindsight's a wonderful thing !!!!
Had the implications of Graves Disease been explained to me back at diagnosis in 2003 I would have chosen a better course of action for myself.
There was no internet back in 2003, and I used to listen and trust in what I was told especially by doctors and professional people, rather than research myself.
Interestingly, there again, thanks to Elaine's book I learnt that there is a greater incidence of dyslexia and left handedness in people who are diagnosed Graves.
Looking back, I was always stressed at school as undiagnosed dyslexic I just tried extra hard at remembering everything and thought that was how it was for everybody else, my hair falling out when the 11 plus reared it's ugly head. Needless to say I failed this exam though my course work was always perfect, as I had to practise writing so much, as I would naturally write slanting the wrong way and get chastised there as well. I went to work as an accounts clerk as I was very good at mathematics, and finally I taught myself to read in my late 20's - seems crazy looking back now.
Thank goodness for Elaine Moore, although I hadn't yet made the left handedness and dyslexia... I'm very sad that you have had to go through all this. Take very, very good care of yourself pennieannie x
Please don't be sad, I'm doing ok, and just one of the many people feeling let down by the system.
I'm much improved looking after myself, and maybe all my bumps in the road came along together as now I feel relatively well, less stressed and getting on, with getting on.
I'm so grateful for the help and advice I found on this amazing forum and just try to give back when I feel I've something to offer, and this helps me and sharing information better equips us all to a greater understanding of what we are all having to deal with.
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