Thyroid Eye Disease - hospital appointment

[Rita-D]

At long last, I've been to St Paul's eye hospital in Liverpool for my TED appointment. I saw a lovely doctor - Dr Lloyd, she was so much better than my endo at understanding hypothyroidism.

She confirmed that I do have TED, although my symptoms have started to subside a little and I thought she would say it was in my head! She was lovely, she explained that as I've had symptoms for 18 months, I'm probably in the final stages of the disease as it tends to "burn out" after 18 months to 2 years. She did all the usual eye checks and said she could see the difference in my eyes.

She said my endo had said I was under-active and that I had gone over-active (I haven't), I have a pituitary issue which means that it isn't producing TSH which his colleague diagnosed and he has conveniently ignored. I explained this and she gently said, you can have TED when you're under-active too! Which I already knew but my endo didn't.

I saw a specialist (registrar) in Wigan last summer when in the full throes of TED and was dismissed with "everything will settle down when you're on the right thyroid dose" meaning, you're over-medicated.

Anyway, I digress. Today's specialist did all the usual eye checks and that as my vision is OK, said that she will see me again in 3-4 months to see how the disease is progressing.

She suggested selenium, which I'm already taking (a NHS specialist suggested selenium)! I told her I'm already on it and that I also take Omega 7 for it too which has helped with the runny, red and gritty eyes. I've also started wearing distance specs for driving and have had these with transition lenses too as I'm extremely light-sensitive and struggle with night driving - she said all these symptoms are typical TED. She said that I was doing all the right things!

She also said that almost everyone has no further symptoms once the "burn out" phase is over and is hopeful that this will happen to me. However, if this does not happen there are possible surgical interventions or medical interventions. Since my eye bulging is reducing (I no longer feel my eyelashes brushing against my spectacles) there is no action at the moment as my eyes are still in the TED ""active" stage.

I have a "lazy" left eyelid and my right eye is still bulging slightly (but is much better than it was) she said sometimes the eyes do not return to normal and that if I want them to, they could do a minor procedure to even my eyes up when the "active" phase is over. She's confident my eyes are OK, but said she might scan them at my next appointment just to be sure.

I have to say, that apart from Dr Peatfield, this is the first doctor that I have felt has actually understood hypothyroidism. I had already heavily researched TED whilst waiting for this appointment and this lovely doctor just repeated everything that I had learned. I now live in hope that there are some doctors in the NHS that do understand hypothyroidism.

If you are in the North West and suffering from TED, ask for a referral to St Pauls!

[Strawberryflip]

Great to hear your appointment went so well x

[Rita-D in reply to Strawberryflip]

It did. The first NHS apppintment in four and a half years where I've felt that the doctor knew what she was talking about!!!

[Raventhorpe in reply to Rita-D]

Hi Rita D glad to hear all went well with eye appointment, it gives me hope that I will get someone equally as understanding when I go in April with my eyes.

[Rita-D in reply to Raventhorpe]

Hi Raventhorpe, I hope it goes as well for you. I was beginning to dispair that there was no one other than Dr Peatfield who understands thyroid disease.

Have you tried Omega 7 for the redness, dryness abs grittiness? It helped me a lot. Also wearing spectacles in the car. I was going to buy some specs with plain glass to see if it helped in winter as I noticed an improvement in summer when I was wearing sunglasses. I even wore sunglasses 1 night to drive which helped with the glare from headlights but researched and found this was illegal!! Oops. I was prescribed distance glasses for driving. It's made a huge difference!

Good luck. Hope your appointment goes well for you.

[Raventhorpe in reply to Rita-D]

Haven't heard about omega7 but have been taking selenium last few weeks, have not been driving as have blurred and double vision so husband's doing all the chauffeuring, this has only been happening for about last 2 months so I figure I got a way to go before it burns itself out.my appointment is only with local hospital am hoping to get referral to moorfieds which I've heard lots of good things.

[Rita-D in reply to Raventhorpe]

Oh my that doesn't sound good. Can you not call them to see if there's a cancellation that can get you seen earlier? Where in the country are you. I went to St Paul's in Liverpool. I've heard Moorfields is excellent! Good luck.

[Raventhorpe in reply to Rita-D]

This appointment is a cancellation as originally was booked in for may typicall NHS sigh! I live in Bedfordshire so near enough to get to moorfieds if I can get referral.

[Rita-D in reply to Raventhorpe]

Oh well, you're probably getting seen sooner than you would have. I had to wait 4 months.

Got everything crossed for you.

[Rita-D]

Update:

I have today received a follow up appointment from the eye hospital to follow up on TED - typed on the day that I saw her and new appointment 29th June she said 3/4 months - how's that for service?

This is the same hospital that I'm waiting for a follow-up endo appointment from my appointment on 6th December. As far as the endo is aware, I am on no medication at all and seriously ill awaiting my next appointment!! As Dr Peatfield said "brutal". Makes no sense. I'm not going back to see him anyway, but he doesn't know that.

Wasn't seen for 14 months following diagnosis of hypopituitarism!! The endo unit in Liverpool and Broadgreen University Hospital is absolutely rubbish and is in the same building as the eye unit!