TED- corrective surgery- seeking alternative treatment

[Martin028]

Hi Everyone,

A quick summary of my condition. I was diagnosed with Euthyroid graves with visable symptoms starting around sept 2016 with some eyelid retraction. My Thyroid blood tests came back perfectly normal, apart from my TSH RC antibodies which came back borderline positive. Endocrinologist stated that medication used to stop the production of too much thyroxine would not be beneficial for me and that my TED would require separate treatment (anti inflammatory steroids or 2nd line agents).

After a course of steroids early last year, my double vision is no longer present and since it’s been over 18 months and the TED appears to be inactive, I am now a suitable candidate for eyelid retraction surgery and or orbital decompression surgery.

I’ve tried various diets and some alternative anti-inflammatory medicines but at this point I believe I have no other option but surgery. Reason why surgery is my only option is due to the inflammatory tissue on the eye muscles cannot regress. Specific antibodies that circulate our body binds with the receptors of the tissues around the eyes and causes a proliferation, so that there is a thickening expansion of the fat in the eyes. This is what has caused eyelid retraction and protrusion in my case.

I’ve still been trying to search for alternative treatments, stem cell treatments, functional nutrition specialists. I’ve tried contacting Dr Peatfield (since there were plenty of good reviews), but it doesn’t seem he is working anymore.

If anyone has had surgery as a result of TED, I would really like to hear about their recovery and who they were operated on by. Also If anyone has been able to reverse their TED by alternative medicines I would really like to know or just any general advice or recommendations on specialists I should see

With regards to my bloodwork- all thyroid function tests are normal, the following are extra tests I had done.

My vItamin B12 level – 452 ng/l

Folate level – 5.7ng/ml

Ferritin Level – 151 ug/l

Thank you in advance

[Karen321]

I have done a lot of research on this matter as I have lid retraction from TED. The only way to correct any protrusion and lid retraction is by surgery. There is some research/trials going on in the USA of a drug used to limit the damage caused by TED but it only seems to help if given in the very early stages of TED. It seems that eyes to do not return to their original appearance when the TED has burnt out and is inactive 😕

[redeyes2]

Rizo, Sorry this is long.... but I feel your pain... as I too have the eye issues, since 2015!

My endo, dermatologist, rheumy, eye dr. and GP offered no referral and no prescription for my eyes. The only advise they gave was an ice pak on lids, for a few minutes. Based on my own medical research I eliminated purines, red meat, white foods, stopped salt, sodas, and alcohol and they still grew out of my head. I don't smoke and avoided smokers. I also tried the anti-inflammatory diet, which did seem to take some of the pain and pressure away, but not perm.

Finally in 2017, my eye dr. sent me to a Specialist, whom ordered a ct scan. My right eye was 27 mm and my left was 15 mm out. I had orbital decompression in the right eye. The surgery went well and has reduced my pain and double vision considerably and that eye looks much better. Dr sd I would be bruised over my entire face and it would probably be a month of pain before I would feel better. It was about a week of mild achy pain and serious double vision and my bruising was only near my eye. After two weeks, I had no visible signs of a recent surgery. It was easier than I thought it would be.

I still look "off" as my left eye has bulged out to 18mm. That one will be done in June. He just put me on steroid eye drops, due to left eye pain and double vision. I also have lid retraction and muscle swelling in upper eyelids, which he can fix, post op 6 months. Most likely, I will need to get that done. He said some people the lid adjusts from the decompression and you may not have to get the retraction surgery, they can tell within 3 months of decompression. Mine didn't go back to normal. Maybe the left one will since its not as far out as my right was. Do you know how far out your eyes are??

If you do find something that helps you, let me know. If I can save having more surgery that would be great!! I am in USA so I know my dr isn't available in UK. I didn't know anyone that had this surgery before I did. So I am fascinated to hear your experience.

Best wishes on your search.

redeyes