Advice about thyroid eye desease

Hi everyone I've been having problems with my eyes for about 2months now, started in one eye but is in both now , blurred vision and double vision, pressure pain around eye area, which seems to be getting worse as weeks go by. I went to optician 3 weeks ago and she didn't think it was Ted as then double vision was only in one eye, but she referred me to ophthalmology dept at local hospital have received appointment but it's not till may so I am a bit concerned that

A. That they won't have the expertise to deal with Ted desease and will be referred to moorfieds hosp which will mean more waiting before treatment.

B. Should I see gp and see if she will refer me straight to moorfieds hosp in a hope of getting right treatment quicker .Will it do any harm to wait for treatment?

I have started taking selenium as read that can help. By the way I should mention I had graves desease for 20yrs any advice would be really appreciated

19 Replies

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  • Raventhorpe,

    As you have Graves it is likely to be TED. May is only six weeks away so it's unlikely your GP will be able to get you a quicker appointment but you could contact Moorfields and say you would be willing to accept a cancellation at short notice if that can be arranged.

    In the meantime suppressing your TSH will reduce thyroid activity will slow progression of TED and your GP can help you with that by increasing your Levothyroxine dose.

  • Hi clutter thanks for swift reply.i suspect it was gp dropping dose of levo that caused problems in first place as she didn't like suppressed Tsh but I have got her to increase meds back up to right level now, I suppose I'm just going to have to be patient a bit longer but it's difficult as I don't feel confident to drive at the moment.

  • The legal side of things is mentioned in rnib.org.uk/eye-health-eye-...

    The law states that if someone develops double vision then they must stop driving. It’s illegal to drive with double vision which is not controlled. If you do develop double vision then you need to inform the Driver and Vehicle Licensing Authority (DVLA) and usually they will contact your ophthalmologist for a medical report. If your double vision then becomes controlled with glasses at a later date then DVLA may say it’s safe for you to drive again. Not informing the DVLA of double vision could invalidate your insurance and you would also be driving illegally.

    Also:

    It’s important to be aware that the treatment of the underlying thyroid condition can make your associated eye condition worse. Sometimes even though your thyroid hormone level becomes stable; your associated eye condition may not improve. This is because, in many cases, both your thyroid condition and associated eye condition will run their own separate course.

    Your optic nerve carries the messages from your eye to your brain and if it is compressed then this can cause blurred vision – your sight may become dim, colours begin to look washed out, and your visual field (your side or peripheral vision) may constrict. If this starts to happen, it’s important to seek medical attention as soon as possible, so that the pressure on your optic nerve can be reduced quickly, before permanent damage occurs. It’s worth mentioning that very few people develop this more advanced stage of the condition.

    Best wishes, my stinging eyes returned with a vengeance yesterday.

  • Raventhorpe,

    Approx when did you start taking Selenium? And what daily dose?

  • Hi londinium started taking selenium about 4 weeks ago but have been a bit lapse about taking every day as find it difficult to fit all supplements in a day sometimes. The dose is 200mcg.

  • Hi Raventhorpe,

    You've had Graves since about 20 yrs ago but began taking Selenium 200 mcg since about 4 wks ago.

    A lack of Selenium, of 20 yrs, may have played some part in your condition.

    I attended a TED conference @ Moorfields Hosp a long while ago where one of the lecturers, an Endo from St George's Hosp in Tooting, said that they now know that people with Thyroid disfunction/disorder require a daily dose of 200 mcg Selenium.

    🖖🏻

  • Hi thanks for info , that's very interesting I will have to make sure I take my selenium regularly every day from now on.

  • Hi just a note it's important to have selenium levels tested if you are supplementing. In our western diet we already have a lot of selenium and lots of us are far from deficient. I speak from personal experience I did a course of selenium and in 2 months of 200mcg per day I went from halfway in the range to well over range and ended up with toxic levels of selenium. Both Endo and Naturopath had me stop. Selenium toxicity causes many symptoms similar to thyroid issues like hair loss, heart palpitations etc.

    So please make sure also when you recommend selenium to let them know to get regularly tested and to know the dangers of selenium toxicity.

    All the best!

    Dan

  • Hi small blue thing thanks for replying, have not been driving last few weeks , husband has become chauffeur poor thing thou optician said I was ok to drive I didn't feel safe suppose I will have to let DVLA know but was holding off till seen optician at hosp, thanks for link.

  • utterly vital you now insust upon a referral to the TED specialists at Moorfields in London

  • Hi really fed up so do you think I should talk to gp about eyes as have not told her I'm having problems have only seen optician who referred me to local hospital, I'm wondering if gp could get me in to moorfieds straight away rather than waiting for referral from local hospital.

  • IMHE when it comes to TED its vital to get referral to the real TED specialists rather than someone dabbling at your local hospital

    its your eyesight that must be protected at all costs

  • Thanks, then I think I will talk to gp and see if I can get referred to moorfieds, thanks for taking time to help me

  • I wish you best of luck when you talk to the GP

    I was part of the TED association helpline when Sally Mitchell set it up

    sadly TED assoc was swallowed up by BTF when Sally was unwell and was bamboozeled into allowing someone i totally distrusted to take over ...

  • Hi, I'm following this with interest, I don't have Graves but am hypo. I'm getting some visual probs, not quite double vision, more like ghosting, so not two images but ghosting above whatever I'm looking at, and more blurring. I'm due an appointment at the hospital this coming Friday. I must get my questions prepared!

  • Hi Swansea wish I could help you but this is the first time I've had problems with my eyes even thou I've had graves for 20yrs I guess it can come at anytime, mine did start as ghosting but has got steadily worse in last few weeks, let us know how you get on Friday, best of luck

  • Thank you for posting this raventhorpe, you've given me a prod I needed

    I too have Graves/RAI and am recently suffering with my eyes. I even bought it up at my last appointment with endocrinologist, he failed to mention any connection and that I should at least get my eyes tested...is there a 'bad list' for endos?

    Hope you get to see the right people and get the treatment you need

  • Following with interest too as I also have burry vision. Some mornings I can hardly focus at all others not too bad but always I feel if I could just blink and readjust the focus they would be ok but that never happens. Also a bit of ghosting.

    Good luck Raventhorpe, keep us posted.

  • Hi katepots your eye problems sound very similar to mine. Have managed to get hosp appointment moved from may to 6th April only local hospital so will ask them if I can be referred to moorfieds. Will let you know how it goes.

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