First ophthalmologist appointment

[itsforreal]

Hey!

I had my first ophthalmologist appointment today and it was the worst.

If anyone who has or had Graves’ disease could share their thoughts or stories about their ophthalmologist I would appreciate it.

I have Graves’ disease and can tell my eyes are bulging a little bit. They always feel a little puffy and have pressure.

I went to the ophthalmologist and was just so confused.

Is a symptom of Graves’ disease the eye issue or is the eye issue an additional issue that I hear some people refer to as TED?

She referred me to a neuro-ophthalmologist who administers tepeeza.

I’m so scared, and nervous, and I feel so alone.

I also feel like I’m putting all my faith into doctors and I’m finding it hard to blindly trust all these doctors.

Thanks for reading …

[PurpleNails]

This charity has excellent information on thyroid eye disease (TED) tedct.org.uk. They also have Facebook page.

Early diagnosis and management of TED is very important, and involving a specialist is the best thing for you.

TED & Graves both stem from the immune system attack on health tissues although they can act as separate, independent conditions & treated by separate specialist.

Complications are very rare with TED, so don’t google worst case images and panic.

200mg of selenium supplements is recommended, Check the label for absorbable forms, selenium l-selenomethionine and yeast bound selenium are best, avoid selenite and selenate.

I do not have Graves antibodies, but have all sorts of eye issues including eye mis-alignment, so I have had months of long battle between GP & endocrinology to get a ophthalmology referral. I was also advised to access urgent self referral, but appointments were always full & they refused to book ahead of time as strictly emergency only? I had a vision test booked today but yesterday the optician called and said that I had so many eye & health issues I needed be to triaged by primary eye care. Waited all afternoon to be told to go and have eye test!

I understand how alone you feel, & how difficult it all is, but you have everything in place to be monitored & treated now. Try not to worry.

[ling]

Don't be scared.I think that's great news that you got a referral to a neuro ophthalmologist! I NEED TO CONSULT ONE!

I believe this eye doc is one up on a regular eye doc as in they sub-specialise in conditions other than just the eye, so they are better equipped to understand how your Graves interacts with the TED.

TED is caused by Graves, and develops into a separate condition of its own. However, getting the Graves under control will in turn help get the TED under control. Seeing a neuro ophthalmologist will afford you the best of both worlds. I hope you get a good doc!

Best wishes.

[Cavapoochonowner]

Hello,I have graves disease and my eye symptoms started almost at the same time.Puffy eyes, dry, bloodshot and later slight double vision an dull ache and one particularly slightly starey. My endocrinologist asked about my eyes on my first visit and referred me to an opthamologist.I do see one for my eyes anyway as I have had 2 cataracts and a detached retina in the past.But the one I see for my TED is a different one.I have been diagnosed with mild TED and have checks (at the moment over the phone) around every 3 months. I have been advised to take ibuprofen for swelling and pain and given eye drops for dryness.The last appointment I had my eyes were quite bloodshot and light sensitive and sore so he prescribed Xailin gel for day and Xailin ointment for night and they are more comfortable.He did say he could refer me for surgery if the appearance bothered me but to be honest I've just got used to it.Maybe later.I wear glasses anyway and it's ok most days.I do find that my eyes are worse if my thyroid levels are too low.I am on block and replace for my graves which was recommended by the opthamologist as it avoids vast fluctuations with thyroid levels once stable. I also take selenium as recommended by another member.Hope this helps.

[pennyannie]

Hey there again :

I think you are in the States aren't you ?

I would therefore suggest you register with the Elaine Moore Graves Disease Foundation website which is Stateside.

You will find support and advice from Elaine's forum, like we offer here, and probably within your own time zone and zip code learning from and of other people in your area who can support you locally and who have been through similar circumstances to yourself.