TED

[Hookie01]

Hi all, just wondering if there is anyone on here with TED that might be able to offer me some help please?

[Buddy195 Administrator]

Hi Hookie01, what are your current symptoms? Are you taking selenium supplements? For dry eyes I use preservative free drops like HycoSan or Hyloforte. For light sensitivity I wear reactive glasses or sunglasses in the day & tinted glasses for driving at night. Seeing a specialist ophthalmologist is key as I’ve seen lots of eye specialists who are not very knowledgeable on TED. I found TEDct really useful & they have an advice line & Facebook group; they recommended a specialist in my area. As my TED has been mild/moderate I’ve not required steroids or surgery, nor have had double vision. I have TED with Hashimotos, whereas it’s more common with Graves.

I just want to reassure you that photos you see on Google search are often ‘worse case scenarios’ so please don’t over think things. My eyes are now massively less swollen than they were and my eye alignment is almost as before I had TED. The condition does knock your confidence & (before face masks) I found sporting bright lipstick whilst wearing sunglasses helped me face the world! Do keep posting if you need any further advice or support; we are here to help one another.

[Hookie01 in reply to Buddy195]

Hi Buddy195, Thanks for your reply.

Current symptoms are swollen eyelids, left one is worse, dry gritty sore eyes. Im especially worse when waking when most of the eye area is swollen . Im lucky the symptoms are mild at the moment and my vision has got a lot better since using drops. I've been using Hycosan drops morning and evening and eating 2 Brazil nuts a day for selenium (is that enough or is taking a supplement better).

I am waiting to see an ophthalmologist so God knows how long that will be. I was just wondering if there was anything else I can do so my face doesn't feel like I've been hit by a bus in the mornings! Do you avoid certain foods? I drink lots of water so I know I'm well hydrated.

[Buddy195 Administrator in reply to Hookie01]

SeasideSusie has a useful post re selenium in Brazils. As I’m wary of selenium nut content, I supplement with good quality tablet.I’m gluten free & avoid soy. I have trialled dairy free, nightshade free & other things recommended by Thyroid Pharmacist but they haven’t had a noticeable benefit.

For me, adding T3 to my Levo has really helped reduce swelling, light sensitivity & dryness & my eye brows have grown back the missing third. It was the TED ophthalmologist (who I saw privately) who recommended my endo trial T3.

[SeasideSusie Remembering in reply to Hookie01]

Hookie01

|For Brazil nuts to contain selenium and they have to have been grown in selenium rich soil. Then it depends in which area the nuts were grown in because the amount of selenium in soil varies. Eastern Amazon and Central Brazil have the highest amounts:

honey-guide.com/2012/11/19/...

The packaging needs to say "Grown in selenium rich soil" and preferably the area and possibly the amount of selenium.

Apparently Sainsburys SO organic brazil nuts contain 50mcg selenium per 30g serving of nuts

sainsburys.co.uk/gol-ui/pro...

and their Fairtrade ones have 75mcg selenium per 30g serving

sainsburys.co.uk/gol-ui/pro...

One member has said that M&S Natural Brazil Nuts say "harvested by hand in the Amazon forest and naturally high in selenium".

Also, check out Aldi's "The Foodie Market" Brazil nuts, the packaging is said to show selenium content as 79mcg per 30g serving.

Another one is 'My Garden of Eden' Brazil nuts from Home Bargains.. They say "High in Selenium and high in vitamin E" on the front of the packet and the Nutritional Information says "one serving (25g) gives 63ug of Selenium".

[Hookie01 in reply to SeasideSusie]

Thank you so much for that. I might switch back to the supplements I was taking then!

[asiatic]

You might find sleeping more upright on a higher pillow reduces the swelling a little. Also I use Xailin Night to stop eyes drying out overnight as the bulging doesn't alow my lids to close properly. My TED has plateaued but at the moment they are swelling again due to hayfever so taking an antihistamine.

[Hookie01 in reply to asiatic]

I have tried sleeping propped up but I find it so hard. I will try the Xailin though, thank you very much.

[PurpleNails Administrator]

I often see the TED charitable trust recommended by other members & Thyroid UK as a excellent information source.

Here’s a link.

tedct.org.uk

You can sign up for an information pack & they have a Facebook link too.

[Hookie01 in reply to PurpleNails]

Thats great, thank you.

[Cavapoochonowner]

Hello, I have TED and graves disease. I am currently on block and replace(carbimazole and levothyroxine) to treat my graves as fluctuations in thyroid levels,particularly going hypo can make it worse.My endocrinologist referred me to an opthamologist at the hospital.My symptoms were dry gritty eyes, pain on moving eyes up down and side to side, double vision, puffiness and bags under my eyes, bloodshot eyes, eyelids almost stuck to my eyes on waking and particularly my right eye bulging slightly. I was diagnosed with mild TED after hospital tests.I was prescribed ibuprofen for swelling and pain.I wear sunglasses in bright light.At my last appointment I was prescribed Xailin night as I don't think my eyes fully close and this has been excellent. I also use Xailin gel for daytime.He did say they could offer an operation if I found the appearance a problem( they were particularly red ,bloodshot and light sensitive on that day) but I said no at the moment.Most days they aren't too bad and I wear glasses so don't notice it very much. I've had 2 cataracts removed and a detached retina so I will avoid any more eye operations unless necessary. If you get the right treatment for your symptoms they should feel a lot better.My double vision has gone now and I have more good days than bad.I also found it helpful to wear an sleep mask over my eyes at night to stop me rubbing them and them drying out.Hope this helps

[Hookie01 in reply to Cavapoochonowner]

Thank you so much, its all very helpful.