I have had Grave Disease for around 5 years now and in the beginning had high doses of Carbimazole, but for the last 3 1/2 years been on 5 mg per day and my thyroid has been completely stable. just as they were about to reduce Carbimazole further (3 years ago) I got Thyroid eye disease, which in my opinion was far worse than the graves! my TED is now 'inactive' and I have been left with 80% double vision, only my straight forward vision is single. We are at the stage now to have an operation to sort out my vision, but my orthoptics consultant said until I decide what to do with my thyroid that it is pointless having the operation for my eyes as if my graves flairs up the TED could come back as carbimazole is only a temporary fix. so my options are RAI treatment (with extra steroids for my eyes) or a Thyroidectomy. I have read a lot of information about both as I was originally told I couldn't have RAI because of my TED but as it is now 'inactive' its ok? I would like to hear from anyone who has been in a similar situation and what did you do? or any advice as its all a bit daunting! Thanks all
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Darto76
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I had mild TED when I had RAI so had 3 months of steroids to prevent it getting worse, however TED can occur with Hypothyroidism as well so RAI and surgery aren't a magic cure.
this is what I am worried about three years of dealing with TED I found is far worse than my Graves, without good vision life is so much harder, I have struggled with what is best for me!
Is your ophthalmologist a TED specialist? If not, I would seek advice from TEDct Darto76, as they helped me find a TED specialist in my area. I have TED with Hashimotos, so it can occur if underactive or even euthyroid (but is far more common with Graves). Very best wishes to you.
RAI is said to worsen TED and although yours is not active & steroids will likely help mitigate issues, I’m not sure I’d be confident to what extent. Steroid will surely have their own set of risk and potential side affects.
I thought TED and Graves develop independent of each other and the association is that they stem from the same immune system attack on health tissues.
TED is often triggered or worsened when level are low. So I don’t understand why your specialist is saying it’s pointless having an operation for my eyes as if your graves “flairs up” the TED could come back? Couldn’t it still come back when your hypo? I think you need the specialist to explain that further.
Surgery or RAI doesn’t cure Graves, just removes one of the target (thyroid) You’ll not have uncontrollable hyper levels any more you’ll need hormone replacement.
From reading on here treatment after RAI seems much more difficult to manage. There was a large scale study (I’ll try and add later) concluding that RAI is the least positive outcome after the procedure. Compared to medication or surgery.
Some have had a good out come after the treatment. It is certainly the easier treatment to administer which is why medics recommend it but I think personally if I couldn’t continue on carbimazole I’d opt for surgery.
Thank you, maybe my wording was wrong, she said it would be better if I got my thyroid sorted first, and that the eye operation should be the final step. (not that I think any of it will be final!) . I would be interested to read the study, thank you
I had RAI for Graves Disease back in 2005 and now manage lingering Graves, thyroid eye disease - caused by the RAI and hypothyroidism.
Graves is an auto immune disease and as such, for life:
Loosing your thyroid simply flips you from hyper to hypo :
You will still be on daily medication and may well not fully recover your " you " :
Hyper is more expensive to manage and in a hospital setting :
Hypo is said to be easier to manage and in a primary care.
In my experience if well on the AT medication stay on it long term :
Primary hypothyroidism is more difficult to treat especially after RAI as this slowly burns out your thyroid in situ and is ingested by other organs and glands within the body and the long term consequences of this toxic substance not widely, openly discussed or acknowledged.
Feel free to dip into Elaine Moore's Graves Disease Foundation website and read about everything Graves, the treatments and possible side effects , and the more holistic, alternative options for treatment of this AI disease which is said to be stress and anxiety driven.
The thyroid is a major gland and responsible for full body synchronisation and metabolism, which is not simply resolved with a little tablet every day.
It's much more complex than that, as otherwise why are there now over 120 thousand people on the Thyroid UK website asking for help and assistance.
Following your story with interest.I have been treated for graves for 3 years and also have TED.i am at the stage where I have asked to be referred to ENT to consider thyroidectomy. Unfortunately in my area there is up to a 40 week wait for treatment.This will give me chance to research properly.My opthamologist is a TED specialist I think so I can ask questions at my next telephone consultation. I believe RAI is not recommended for patients with TED.Mine did lead to double vision but that has gone.I have bloodshot, gritty eyes and light sensitivity.My right eye also bulges a bit.I too don't want to cause problems with my eyes as it's terribly uncomfortable.I think you are right to ask as many questions as you can so you can do what's right for you.Best wishes.
thank you , good luck to you too, I haven't been told the waiting time yet but I am sure its pretty similar to you. I will keep you informed as to what I will do next.
Hi there, an update to my story.I had an appointment with my opthamologist last Wednesday and my TED has flared up again.This time in my left eye.It has started to bulge and the eyelid is slightly retracting.He did offer a steroid injection into my eyelid and possible steroids by drip if it gets worse but he too said that my thyroid needs to be controlled better.I have agreed to a small increase in thyroxine to try and bring my TSH down a bit but I need to balance that with possible migraines and high heart rate. He was pleased to hear I'm waiting for an ENT appointment for thyroidectomy and said I would need steroids when I had the operation and a tapering off after to prevent my TED getting worse.It is difficult isn't it when you have 2 things to consider,and believe me I know how precious your eyes are.I have had 2 cataracts removed and also a detached retina.He said he would write to my endo and ENT consultant so whether that will make any difference to my wait time I don't know.Obviously I know people with cancer will have priority.I did find the ENT secretaries number on line to check they'd received the referral and she said they were offering people who'd been referred in May an appointment at the moment and I was referred in June .So it shouldn't be long now.Hope things are still ok with you.
Hi Cavapoochonowner,Sorry to hear your TED has flared up again, back when my TED was at its worst I was given 12 weeks of Weekly steroid drips which possibly helped, I can't really say for sure. I had an appointment with the Thyroid consultant last week, my bloods showed my levels had very slightly risen so up to 10 mg of Carbimazole for 6 weeks and retake bloods again. I was surprised as this is the first time it had changed in 3 years. After lot of research I have now opted to go on to the list for a thyroidectomy, Approx 12 month waiting list (or possibly longer) but I am happy to have started the process. Opthamologist appointment next month.
Hello there, thankyou for your reply.Your eyes must have been in a bad way to need weekly steroid drips. I'm glad you are on the waiting list for your thyroidectomy, hopefully it will be a bit quicker than expected.I don't know if you take selenium, but my opthamologist said my eyes would have been alot worse if I hadn't been taking it My son buys it from Amazon for me and the recommended dose is 200ug per day. Mine is the brand health4all and is selenium selenomethionine.It is not very expensive and may help.Thanks for the update.
It's best to start your own post with your questions as otherwise no one is going to see your posting way down on here on someone else's post that is now considered an old post and as you haven't directed your question to anyone in particular you are not going to get a lot of support and / or information sent back to you;
Just for reference - whilst here - here are a copy of links to kick start your own research :
I also have an appointment on the 21st, with endocrine. My Graves relapsed after 2 years, and I have signs of TED for the first time. I always thought I would stick with long term carbimazole treatment for graves, but my eyes are making me consider total Thyroidectomy. It’s not an easy choice though. I’d love some positive Thyroidectomy stories!
Yes so would I.I hope it's us.I try to rationalise it by thinking people with success stories will just be off living their lives, they won't have need of a forum like this.I'm glad I found this forum though, as I understand my condition and the workings of the thyroid much better.It's nice to hear other people's stories as well.Good luck to us!
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