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Thyroid UK
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Graves advice please

Some advice for my cousin Julie please - she's just had eye op and can't see to type hence me posting this on her behalf. Julie has Graves and has a tt. Orbital decompression surgery just done. On 125 mcg levothyroxine. She needs to know with Graves, how to look after herself. Gluten free? NDT? Will bulging eyes come back if Graves not under control? How do you control Graves? Does she need antibody blood tests regularly? Brain fog a big issue, joints hurt, lethargy, still gaining weight. Feels like a bag of 💩. Would be very grateful for some advice please xx

3 Replies

I have hypothyroidism so don't have knowledge about Graves or Thyroid Eye Disease and wish every success for Julie.

Others who have/had Graves will respond when they read your post.

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Thanks Shaws xx


Gosh poor cousin! I can relate, I am Graves, TT and just had orbital decompression.

I look at as protecting the eyes first and foremost and then everything else after. The eyes are a completely separate disease to the thyroid and yet some of the treatment crosses over. It is very important to keep you TSH suppressed and that she must get her endo and opthalomogist to work together in this. After that the eyes are sensitive to inflammation so many do look at gluten free, dairy free but the doctors will not be any help in this area. Selenium is reported to help with conversion of T4 to T3 but also with the eyes. Keeping the eyes well lubricated is help. I use hylo-forte 2%. If at any point there is an infection or any signs of sinus problems, it is essential to get an antibiotic as any further build up of pressure is bad for the eyes. As for testing for antibodies, again no doctor or endo is going to test but if you want to test privately for peace of mind that is pretty easy to do. Great facebook page which is members only call Thyroid Eye Disease and has been a life line for me as the eye disease seems to be my biggest problem. facebook.com/groups/3129984...

As for the Graves, I treat the same as everyone here as I am hypothyroid. Test for B12, Vit D, ferritin along with full thyroid panel which must always include FT3. If there is no thyroid and taking T4, it is the only way to see if she is converting.

Tell her to rest well.


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