Hi all, hope you've all had a lovely Easter and are enjoying the bank holiday
I'm asking the above question because roughly 3 years ago when I was discharged from my local ophthalmology department, my doctors told me during my final consultation that if the appearance of my eyes continued to bother me after some time had passed, I should feel free to contact them. How would I go about doing this? Would it be unorthodox to contact my old doctor's secretary (though I am a bit afraid of secretaries now 😅)? Has too much time passed? Would I have to just do it the old-fashioned way and have my GP make another referral back to my ophthalmologists?
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lau99
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If you have concerns about your eyes & have seen a knowledgeable ophthalmologist in the past with knowledge of TED, I’d definitely ask for GP to refer you asap and also phone the eye specialist’s secretary to check about the waiting list/ any cancellations. Very best wishes lau99!
Thank you so much, Buddy195 That's really helpful. My eyes aren't as severe as many others but when my TED was active, it was in the moderate-severe category and the aftermath has left me looking much different to how I used to (I wonder if I'm even eligible for anything NHS-wise?). I know I still have other, more pressing issues to worry about (i.e. optimising thyroid levels) so I'll tend to those first, but I'd like to start making steps towards regaining control of my situation if I can.
Doctors can have some funny ideas about these things. We patients can't be expected to know what they think or how they will react!
It seems entirely reasonable for you to ring and ask.
In some parts of the UK, ordinary high street opticians are able to directly refer you to a specialist. So that might be an option if you do need a referral.
Oh, that's a really good point that I hadn't considered at all...I'll definitely look into the opticians route, as I believe my appointments are still discounted while I'm a student
You could ask your optometrist to ask if they could refer you to the consultant you want to see - it would probably be quicker than going via your doctor. Even if your optometrist can’t do that they will still probably know the fastest way for you to be seen.
I just contacted my endocrinologist via his secretary by phone and she was very helpful and said they would see me. So I assume you could do the same especially as they told you it was ok to go back to them if you had any further problems. Just call the secretary and explain your situation and that they said you could go back if necessary. You have nothing to loose by asking.
I hope the sec is a decent stick and helpful but if they aren’t that’s their problem not yours. Just means more faff getting it sorted. I just asked mine straight if they could help me after explaining the problem as briefly as possible - a whacking great 75mcg drop in Levothyroxine in one go demanded by a really dreadful GP, after 9 months of hell getting optimised, after nearly croaking from this awful thyroid disorder preceded by years of gaslighting and being told it was this or that and later the menopause and have some antidepressants 😠😡🤬 and that idiot wanted to put me back virtually to square 1. The sec was great and said they wanted me back under their care and no changes to my medication were to be done by the GP. She said they didn’t spend all that time and effort sorting out my dose to have it compromised like that. It was completely against any guidance too and bound to totally mess me up again. The GP dropped it like a hot spud when I said I was so unhappy with her suggestion I had called my endocrinology department and they wanted me back under their care. I switched GP fast and thankfully got someone much better. I didn’t need to see them because the insane reduction was abandoned - it was complete nonsense, but it was good to have been given that escape route from her bonkers ideas and meddling.
Gosh, what a tough journey you've been on! I'm so glad to hear that you've dropped that GP and that you had such a positive experience with the secretary! I hope you're feeling much better now. Unfortunately for me, while the secretary was perfectly nice (just got off the phone with her), she said that my TT/final consultation in ophthalmology was too long ago for me to be able to bypass getting a new referral. She did say though that they'd be more than happy to see me again if I do get a referral. Not to worry though, as you say it just means dealing with a little bit more faff
As I understand things the reconstructive work will only be considered once the Graves Disease is deemed settled and " over " :
So a time lag from surgery is to be expected :
My disfigurement was considered " not bad enough " when I asked - and in all honesty it has improved immensely now I'm on an optimal dose of full spectrum thyroid hormone.
I was in shock as my eyes only " popped " after RAI treatment and when I thought I was better - so I think a totally different issue to those of you dealing with these issues longer term and likely with more complex issues.
Thank you for the insight, Penny I'm definitely eager to see if getting on the right medication will have any effect on the appearance of my eyes. I'm not too hopeful that they'll be less bulgy, but hopefully my eyes won't be bloodshot when I go outside and my eyelids/eyebrow area will be less puffy...As far as any doctor that I've seen in the last 3 years is concerned, I'm (to use their words) "cured" of Graves' disease, so I don't think that part will be much of a problem...
Once you have been formally discharged from any department/consultant, a new referral is usually needed for any consultations deemed necessary. However, it is a grey area if your consultant has said to contact them if you have any concerns in the future. You could try contacting the consultant's secretary for advice, or ask your GP to do so. If you remain under the care of any consultant, you can always contact their department directly.
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