Viewing 4 posts - 1 through 4 (of 4 total)
  • Author
    Posts
  • sisufinn87
    Participant
    Post count: 1

    Hello Everyone –

    I am currently undergoing treatment for Graves Disease (methimazole) and have also been diagnosed with Hashimoto’s Disease . I am experiencing moderate to severe eye pain associated with Graves Eye Disease. My eye doctor had prescribed oral prednisone but is now currently weaning me off so I can undergo IV steroid treatment.

    My problem is that no one seems to understand why/how I am having such pain associated with this disease and I feel completely alone and lost as to where I should turn. The eye specialist has told me to look into a pain specialist, however the reality of the situation is that no one will treat me because I have such a “different” kind of pain. Typically the pain specialists are used to seeing back/neck/joint patients and so they have ALL told me they cannot help me and have referred me back to checking into neurologists, ophthalmologists etc.

    I was wondering if any of you have experienced this type of pain with this disease and if so, where did you turn for help? Any ideas would be appreciated as I am feeling so stuck in how to get some help at this point. Thanks.

    Kimberly
    Keymaster
    Post count: 4294

    Hello and welcome – Hopefully, you will see some relief once you are back on the IV steroid therapy. Steroids aren’t a long-term solution, but they can definitely be a huge help to those who are having severe TED issues, but aren’t yet candidates for surgery.

    We do have several regular posters here who have dealt with TED, so hopefully, they will chime in here with their experiences.

    npatterson
    Moderator
    Post count: 398

    Hi,

    I will try to help answer your question, but need some more information. what kind of pain, where, when, etc. Are your eye closing at night? Are you seeing a neuro-ophthamologist (someone who sees a lot of Graves’ eye disease).

    Take care,

    Nancy

    snelsen
    Participant
    Post count: 1909

    Hi, if you have someone prescribing prednisone for your eyes, does that mean you are seeing an eye doctor or a neuro-eye doctor? Sorry, I just re-read your post, and you ARE seeing an eye doctor. Sound like you do have a diagnosis of TED (thyroid eye disease) same as Graves’ eye disease. And, as Nancy said, I think you need to see a neuro-ophthalmologist.

    You need to understand WHY you are taking the steroid (is it pressure on the optic nerve?) and what the plan of care is for you. Do not go to pain specialists, I don’t think that is where you need to be.

    In answer to your question, I had severe TED, and YES, I had terrible eye pain when I moved my eyes. It is not unusual. Agree with Nancy, that you must see an eye doctor who is very familiar with TED. There is a lot of stuff that matters, in terms of treatment, and the progress of the disease. ANd, you need to learn more about it, which I won’t elaborate here. Surgery helps many things about TED, but not until the active (or hot)phase is over, but there are exceptions to that, the big one being pressure on your optic nerve. You should be hearing all of this from your eye doctor.
    Shirley

Viewing 4 posts - 1 through 4 (of 4 total)
  • You must be logged in to reply to this topic.