Viewing 15 posts - 1 through 15 (of 19 total)
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  • Kimberly
    Online Facilitator
    Post count: 4262

    Welcome to the “Men With Graves’ and TED” Thread! This thread was set up for men with Graves’ disease and thyroid eye disease to share their experiences and concerns.

    This thread will be moderated the exact same way as the rest of the forum. To review the forum guidelines, click below. (Note: if you click directly on the link, you will need to use your browser’s “back” button to return to the boards after viewing, or you will have to log back in to the forum. As an alternative, you can right-click the link and open it in a new tab or new window.)

    http://gdatf.org/forum/topic/43571/

    All users must agree to abide by the forum guidelines prior to making their first post and then every subsequent 90 days.

    Since all of our current moderators are women, there *will* be women occasionally posting on this thread. For men with questions that they would like to pose to ANY patient (male or female), feel free to post your question here *and* on the main forum.

    Please note that all new members are placed in a moderation queue before their first post goes live; this step is necessary to keep spammers off the forum. This usually takes one business day, but can take a little longer if we are working offsite at patient or physician events.

    jstephens
    Post count: 14

    I don’t have much to say but will try to answer any questions that come up.

    My story is
    Fall 2011 diagnosed with Graves
    Feb 2012 biopsy could not rule out cancer. Decided to have a total Thyroidectomy I choose this path since I grew up near Hanford Washington this was part of the Manhattan project and is being sued by downwinders for all the radiation released that happened over the years. Mine ended up being non cancerous but I figured better to play it safe.

    Shortly after surgery my TED started to show up. My Dr says it should get better after about 5 years. The past 2 years it does feel less “buggy” and I no longer have to use eye drops or gels at night. *crosses fingers

    This past was the first we did not have to make any dose adjustments. Currently on 188mg of synthyroid

    Still dealing with the mental side. Have good weeks and bad weeks. Mostly frustrating is the short term memory issues when you know something and want to say it but can’t spit it out.

    shimself
    Post count: 8

    Just kicking it off

    My younger brother (who never smoked) got Graves and TED at age 50ish, it remitted quite quickly leaving him with proptosis and occasional diplopia (when tired or after a couple of beers).

    I (who smoked from 15-53) got graves at 57yo, it hasn´t really remitted fully even now after 8 years in that the TRAb is still bubbling along at a very low level 2UI/L, so I´m still on block replace (5mg carbimazole, 88ug levo). It took 6+ years to get the TRAb down from a lowish 8~ UI/L. I´ve had diplopia all that time getting harder to control with the prism specs, but finally it was good enough that I undertook strabismus surgery, and now glory be, I can read withiut specs and am never seeing double, and I feel safe to drive (using the same prism specs as before) further than the supermarket because I´m not worried my vision will turn double.

    I can´t understand why anyone would choose to get rid of their thyroid gland.

    I can understand, now when I look in the mirror my eyes are as well aligned as anybody else´s, why it is that I need prisms.

    I can´t understand why 5mg carbimazole is sufficient to block endogenous thyroid secretion.

    Thanks forum for being there

    Mforsberg21
    Post count: 23

    So Jstephens your eye problems came shortly after thyroid surgery. Mine came 2 To three weeks after Methimizole treatment. However I can’t find any research that suggests either cause the onset of TED. I only find research that suggests RAI can cause the onset of TED or make it worse. Kimberley maybe you could weigh in. I’m just wondering why RAI makes TED worse? Is it the Radio active iodine itself or the sudden rise in TSH?

    jstephens
    Post count: 14

    @shimself I had mine removed because my biopsy could not rule out cancer and since I grew up next to Hanford WA nuclear reservation ( part of the Manhattan project ) I didn’t want to take the chance.

    @ Mforsberg21 – there might have been some slight bulging but not nearly as noticeable as post surgery, seems to have improved once they got my levels sorted out.

    Kimberly
    Online Facilitator
    Post count: 4262
    Mforsberg21 wrote:
    Kimberley maybe you could weigh in. I’m just wondering why RAI makes TED worse? Is it the Radio active iodine itself or the sudden rise in TSH?

    Hello – There are a couple of theories. One is that the spike in antibodies that occurs for 6+ months after RAI is responsible for the increased risk for new/worsening TED. Another is that the increased risk comes when doctors don’t start replacement hormone quickly enough after RAI and patients are allowed to go too hypO. I heard another theory at a recent conference that there is a specific substance shed during the breakdown of thyroid tissue following RAI that might be involved. (I need to find some additional info on that last one.)

    aggets
    Post count: 3

    Hi

    In Andy and am a new member but not new to graves and TED. I was diagnosed with Graves in 2000 at the age of 31. My TED followed shortly there after. I had 2 wall decompression surgery in 2002. This past February I had a “Reactivation” as my Dr called it that required pulsed steroid infusion and unfortunately i have permanent vision loss in my left eye hoping the same thing doesn’t happen to my right eye. I was wondering if anyone who had decompression surgery has had problems with nasal congestion. I am basically always stuffed up and was wondering if anyone has had similar problems. So that’s my story.

    Thanks Andy

    bigad
    Post count: 40
    aggets wrote:
    Hi

    unfortunately i have permanent vision loss in my left eye hoping the same thing doesn’t happen to my right eye.

    Thanks Andy

    Hi Andy,

    What caused your vision loss?

    Thanks,
    James

    bigad
    Post count: 40
    aggets wrote:
    Hi

    unfortunately i have permanent vision loss in my left eye hoping the same thing doesn’t happen to my right eye.

    Thanks Andy

    Hi Andy,

    What caused your vision loss?

    Thanks,
    James

    aggets
    Post count: 3

    Hi James

    My Graves Diease “Reactivated” as my Dr put it causing swelling in my eye and compressed the optic nerve. I had high doses of Steroids to reduce the inflammation but some permanent vision loss exists. Heres what happened. As I said before I have had Graves and TED for 15 years and also double vision when I look to the sides and down up is pretty good, Looking to the left is the worst. When I drive and need to look to the left I always close my left eye my right is dominant. So one day on my way to work I decided to close my right eye just for the heck of it and was shocked at how poor my vision was. So I got in to the Dr the next day and saw a retina specialists (all that was available to see that day) so long story short My appt was at 8:00 AM and I got home at 9:00 that evening. My vision has improved since then but overall it is quite poor in the left eye. Whats really hard to believe is with both eyes vision is good I guess working together the right must compensate for the left. And maybe a word of advice for anyone with similar problems who always closes the same eye due to double vision is to check that other every once in a while to make sure you are not losing your vision.

    Andy

    bigad
    Post count: 40

    Thanks for the update Andy. Fortunately, I currently have a mild case of TED in the right eye. I was diagnosed with Graves in May 2013 and noticed some eyelid swelling over right eye in January 2014. I’m hoping my TED has burned itself out, or close to being burned out as they say.

    The swelling has gone down, but my recent CT scan still showed some muscle swelling in back of eye, that pushed eye out about 3 mm, but not noticeable (I can tell the difference when staring in mirror). If that’s the worst my eye gets, I’ll be happy…I have no double vision, no problem closing eyelid and optic nerve looks good…but it sounds pretty scary that your TED reactivated several years later. My dad is 87 and had rai over 30 years ago…he takes synthroid and has no noticeable issues with TED.

    redbeard1
    Post count: 1

    Hi, my name is Dave and I was diagnosed with Graves’ Disease in May of 2010. Since my diagnosis I have had 2 orbital decompressions and 2 eye muscle surgeries. My eyes are still not lined up, so I have to use one eye to see. I have vision in both eyes, but have extreme double vision when I try to use both at once. I have headaches all day, every day. The doctors I have gone to say they have done all they can for me. I get so frustrated some days. I have good days and bad days. The bad days are debilitating, in bed all day with cold rags on my eyes to try to ease the pain. If you can relate let me know. Thanks for listening. Dave

    snelsen
    Post count: 1909

    Great forum. I’m not a guy, but I sure do agree with Andy about his suggestion about closing one eye. I did that sooner than he did, and that is the ONLY reason I ended up with pretty good vision in that eye. I had an emergency decompression. It can happen very fast. Do see a neuro-opthalmologist to follow you closely if there is one in your area.
    Shirley

    aggets
    Post count: 3
    snelsen wrote:
    Great forum. I’m not a guy, but I sure do agree with Andy about his suggestion about closing one eye. I did that sooner than he did, and that is the ONLY reason I ended up with pretty good vision in that eye. I had an emergency decompression. It can happen very fast. Do see a neuro-opthalmologist to follow you closely if there is one in your area.
    Shirley

    Hi Shirley

    Glad to hear you your vision is “pretty good”. That is really important to check that other eye. I can never remember my DR. recommending to check that non dominant eye but it seems that it should be discussed with every patient with TED. That could literally save someones sight.

    Andy

    Patsgirl
    Post count: 9

    Hi Everyone,
    I’m so relieved to have access to this thread! My husband was diagnosed with GD in Jan and had TT on April 1st. I’m hoping to learn from you how to best support him during the times of emotional upset and irrational behavior. He left me completely out the blue for several days. He has returned now but is distant most of the time. I love him with all my heart and hope he doesn’t end our marriage while going through this disease!
    Any suggestions, advice , or encouragement are welcome!
    Thank you.

    Jill

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