ted or ocular myasthenia gravis


for the past yr i have been having problems with my eyes, after images, double vision, floaters, migrain with aura,muscles weakness inmy arms and legs, trouble swallowing, being slightly confused , anxiety really bad,thyroid levels have been ok,

have had a follow up app today at the eye dept, my blood test they did last time seems to have disappeared,i asked what they were testing for as he did not tell me when they took the blood, turns out it was for myasthenia gravis,

but today he said that he does not think i have this as my droopy eyelid does not droop enough!!!!!

has given me some eye drops to help with my tired eyes, says there is nothing wrong with my visions fields am fit to drive,which i do agree with as can see fine,

and has written to my gp to ask for me to be refered to a thyroid doctor and if he feels i need a blood test for myasthenia gravis then they can do it,

oh and says i do not have TED,

asked what was causing my symtoms and he did'nt know, so does anyone else have symtoms like this?

8 Replies

  • Nothing like as much or as bad as you! But I have had numerous eye issues. (Some double vision, floaters, a couple of migraines with aura, generally "uncomfortable" eyes.)

    They have almost entirely resolved by achieving decent thyroid hormone levels.

    Do you have actual test results? And reference ranges. Or do they fob you off with "normal" or "OK"?

    Also get checked vitamin B12, folates, iron/ferritin and vitamin D.


  • hi

    thanks for the reply, gp used to give me a print out then refused as said i did not need to know, but he has just left the practice so am hoping when the hosp write to the new gp she will refer me and i will be able to have all the bloods done by the endo and get some proper results,

    but to be honest i dont think it is my thyroid causing these problems

  • That disgusts me.

    You are entitled to the information from your medical records. Have a look here:


    I urge you to get hold of them.

    I would not bet against thyroid causing it all - but it is important not to assume it is!


    By the way, if you click on the blue "Reply to this" the person you are replying to gets an alert email. Helps to keep communication going.


  • Hi, Have you founds any answers?

  • I had these symptoms my blood tests were normal Tsh was 0.5 and ft4 was 14.6 (10.0-22.0)

    Managed to get gp to p dose although resistant and have felt a lot better.My eyes are much better hope this helps x

  • I have the after images, floaters, static vision and get migraines too. I haven't noticed a difference really with going from normal levels to hyper right now. I know that my t4 free and t3 free are in normal range and tsh is very low and I havent had a migraine in several weeks... I used to get one a day ;)

    The symptoms are rather annoying though... dr. Said my eyes were fine but that it was my brain. I have heard there are tsh receptors all over the brain though.. and to note my tpoa antibodies (sp?) Are so high they past the limit on testing. I have graves tsi antibodies and hashi antibodies with my graves hyperthyroid.



  • I have Hughes Syndrome, Sjorgrens Syndrome and Hashimoto. These three tend to come as a trio. Many of the symptoms that you describe can be shared with one of these so a Rheumatologist with experience with these conditions would be a good port of call. They would be able to screen with the appropriate tests to see if you did have any of them. In the mean time look on the Hughes website to see if there is any info there that sounds familiar and if so take it along with you to your GP.


  • My optician I find is my bestest pal. They love to fire off warning letters to the stubborn Drs about eyesight issues they find, especially with the thyroid patients.

    Funny how Drs who dont work with thyroids know more than those with.

    I get what you describe, Im hypo with Hashis. Currently being haunted by my aura smoking ghost as opposed to my aura wall paper paste ghost. Why I cant be haunted by some sexy man ghost, I wouldnt complain then.

    Go to an optician and get your eyes tested, they can see all manner of things. No Dr can refute an optician unless they want you deanding to be referred to a hosptial one and they hate that worse than a chain optician.

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