Thyroid Eye Disease

[Roguebarel]

I am so angry and upset with this disease. I just wish that it would go away. People on the outside don't understand the mental and physical injury this disease causes. I feel so helpless and all people want to say is pray... What can pray do at this stage when you are so angry with God?

[Heloise]

Believe me, we all feel the same way about the conditions. Anything chronic pushes you to the extreme so I understand your moment. I felt the same about tinnitus. I don't know if you are being treated or making diet changes but we just had some wonderful interviews by functional doctors and I see they are using more than just methimazole or propylthiouricil. I took some notes and wrote this in a post the other day:

Flori-Cal might be useful for Graves, also Lithium Carbonate or high dose carnitine. They may block iodine receptors but your thyroid contains loads of iodine which will still be released.

[Fruitandnutcase]

Can’t really offer any help but I can see how you feel like you do and you’re right - people who haven’t got it or haven’t had it don’t really understand. They think they do but even the kindest most supportive other half doesn’t really ‘get it’ and people who don’t live with you definitely don’t understand how you’re u feel.

When my Graves kicked off years ago my pharmacist gave me my first lot of carbimazole and told me to take a high dose of vitamin C along with it, so I always did that 1000mcg slow release vitamin C with zinc. Don’t know if that would help how you feel. I always felt well (or as well as you can feel in a Graves kind if way)

I also went totally gluten free and that massively reduced my thyroid antibodies so you could try that too. I think it was being gluten free that reduced the antibodies although equally it could have been that they might have been going to go anyway.

Are you being seen by an eye specialist who specialises in TED? If not try and get referred to somewhere like Moorfields in London or at least a good eye department where you will find someone who is an expert in your field. If anyone suggests radioactive treatment to you I gather it’s not best for people with thyroid eye disease - you are better with a thyroidectomy if you have to lose your thyroid.

I would say read as much as you can about your condition and ask your doctors questions. I used to keep a notebook with all my blood test results, any questions about my treatment as well as any articles I found that were relevant to my treatment and I kept a daily diary of how my body was and how I felt.

Sounds a bit obsessive maybe but in the beginning I wasn’t confident that I would get the treatment and medicines I would need etc, I would also get to my endo appointment and say I felt fine when they asked how I was feeling - then I’d realise I didn’t feel fine but I’d missed my chance. So I would look through ugh my notes and write a little report to take with me spelling out exactly how I felt.

Then I discovered this site which helped a huge amount and I found that doing keeping notes of everything and making sure I was part of my treatment rather than just ‘having it done to me’ helped me feel in control - I never felt ‘helpless’ so doing what I did might help you to feel more in control.

I think one of the annoying things about Graves is that it takes time - or I think it does. There just doesn’t seem to be a quick fix for Graves - my treatment took exactly a year and I was told that my hospital treated Graves ‘the fast way’ - with block and replace - I was shocked that they considered a year to be ‘the fast treatment’ - you will feel a bit more normal again eventually though.

[asiatic]

I can sympathise with how you feel as I was feeling low with TED a couple of years ago but so much better now. Here is what helped:-

Cold gel eye pads kept in the frig gave a bit of relief . Micowaveable hot eye mask soothed my eyes and comforted me when feeling low.

Applying lots of thick eye gel at night and wearing a mask to keep swollen eyes closed helped me sleep. Applying lots of preservative free eye drops lubricated my dry eyes during the day. I was prescribed Ikervis which helped my dry eyes. Wrap round sunglasses helped the light sensitivity and concealed my swollen eyes. Orthoptist fitted me with stick on lense to cure double vision. It will take a while but symptoms will ease.

[aliboy03]

the devil throws these things at us not God. I will pray for you.

[Roguebarel]

Thanks everyone. Really at a low point right now. Frustrated with all that is going. I will be sure to use all the info. At present, I am on carbimzole and proprananol. In addition, to oral steriods for the TED. Using eye drops and switched to gluten free diet. Is there any thing I can do for the swollen eyelids? That at least reduces them a little or is this a part of the process

[asiatic in reply to Roguebarel]

As I said above cold and hot compresses gave me a little relief from the swelling. It's worth a try

[Roguebarel in reply to asiatic]

Thanks. I usual do a cold compress but with try the hot as well. I don't think it makes a difference appearance wise but it helps to sooth them on really bad days

[ling in reply to Roguebarel]

I didn't realise it till my lids had swollen like a frog's and my eyes were becoming like slits. I don't know if anything can reduce the swelling as I never looked into it, but it will pass as the disease activity wears off, your eyes do return to looking normal

[Roguebarel in reply to ling]

Thanks Ling. That offers me some reassurance that I won't always look as I do now. My self esteem lately has taken a nose dive.

[ling in reply to Roguebarel]

You are welcome Roguebarel.

There is one thing u might want to know about TED. Once u have it, it stays with u and later on, even if your thyroid levels are normal, but if u undergo stressful periods or u are unwell, these can trigger the TED to return, so this is something to be watchful of.

[Eyeissues]

I know exactly how you feel! I have family members who try to understand but what I get is well what if you had cancer?

I get there is people worse of but im in my 20s and got a condition that leaves me in constant physical pain and looking like a freak. People can be so cruel as well. Makes me not want to leave the house, look in people's eyes. What's worse I've completely lost who I was and I realised I love that girl. So anyway to get it back would be ideal.

Are you considering any type of surgary to correct the issue once your are in remission and eyes stable?

Also have you heard about the new drug being tested in America. I beleive it only works in the active stage but its said to hault swelling in the eyes.

[Roguebarel in reply to Eyeissues]

Yes. I have read about the new drug and yes if need be I will. I am hoping that I don't have to and that my eyes will go back to the way they were are very close. My mom had it and her lids remain a bit heavy but they aren't that bad that it is noticeable. I am hoping that I am the small percentage of people that return looking normal. Today was a really hard day with people in my face talking about how I look. It really hurts at times...

[Pussikins]

I too am at a very low ebb. TED has disfigured my face. I had a TT In January 2018 but eyes still bad and does not look like they will get any better. Orbital decompression seems to be the next step but am reluctant. I HATE HATE HATE this disease.

[Roguebarel in reply to Pussikins]

Hang in there. I am currently on iv steriods. Hoping for the best.

[Pussikins]

Good luck xxx please keep us posted.