[FindingMe]

in reply to: Physical and Pyschological effects of GD/TED #1062712

Shirley: I would like to know more about your surgeries and treatment with your TED and will send you an email with my questrions. Thanks!

Ski: Thanks so much for the uplifting reply!!

I have have been tested for this and that. Have had many doctors look into other possibilities. I’ve tried different medications and dosages. I am currently on 150mg of Synthroid. My doctor does look at the labwork carefully but also listens to me to determine the correct dose.

A few months ago, I started therapy with a psychologist. It’s been extremely helpful. Both my doctor and the psychologist both state that the years/months before the patient is diagnosed with GD/TED and the severity of the disease both have an impact on a person’s future prognosis. I have also done a bit of research on the web and have found articles stating similar facts. I recall one article that discussed how many patients have a difficult time moving foward because they are told by family, friends and physicians that there must be something more going on. Instead of the patient finding peace, he/she continues to believe that if they find whatever that something else is, their problems will go away and they will be the person they were before GD/TED. If and when they don’t find that something more, they go further and further into depression, anger and denial.

I will always continue to listen to my body and, together with my doctors, we do keep an open mind that there could be something more going on; however, my focus now is on peace and acceptance.

Thank you again for the thoughtful reply. The part about climbing Mt Everest gave me goose bumps!

[FindingMe]

in reply to: DRIVING AND TED #1063051

Shirley, I just now saw your reply post to me.

I appreciate your thoughts but I think you might have misunderstood my post. My reply was in response to doctor’s advice on the topic of TED and Driving. Susan commented that doctors seem to avoid the topic of driving with TED because of the constant vision changes and in your comment; you had noted that doctors should discuss the relationship between driving and vision. I completely agreed!

In my reply, the point I was trying to make was that each doctor told me something different and I would walk away more confused than before. Please keep in mind, at the time I didn’t quite understand TED and none of the doctors fully explained to me how the vision changes from time to time. The relationship between driving and my vision was never fully discussed and it’s hard to ask questions you don’t know to ask. My father was with me on each visit and he was just as confused. In my opinion, doctors should give detailed information and provide much better advise when it comes to TED and driving.

In regards to covering one eye or using an eye patch – I do NOT agree that my doctor provided me with reasonable and professional advise. I probably should had explained further in my post. She stated that there was no reason for me to limit my driving and to close one eye when I had double vision – simple as that. The doctor was completely aware of the blurry vision, limited peripheral vision and double vision. I do not feel the doctor fully explained TED. I would caution anyone using the technique of closing one eye while driving and only do so as a last resort.

Unfortunately, I had to learn the hard way that the technique does not work too well with blurry and limited peripheral vision. I was not prepared when when I closed the one eyelid to find things blurry and had limited vision. When I open the one eyelid, I couldn’t immediately adjust to the double vision and was scared to death. I was traveling on a highway going 55mph and came close to a head on collision. Granted, one could say that I should had tested the technique of closing one eye on a back road but keep in mind that my knowledge of TED was limited and I trusted the doctor’s advise. The point is, the doctor made it sound so simple and in my experience, it’s not always so simple to close one eye and drive.

I am very excited to hear your success with the surgeries. I may still consider surgery. But, I am very scared of loosing what vision I do have. And, what happens if the surgery is successful then later on my vision changes and I start having problems again? My understanding is that the surgeries are only a treatment, not a cure.

[FindingMe]

in reply to: oh anxiety…you just love popping up all the time! #1062732

Are you in enjoying your summer weather?? We in the US can’t wait for spring!!!

Honestly, the anxiety part really sucks. I have twin boys 19 and daughter 21 (two are in college.) I drive my kids and my husband crazy! My husband is the only one who will tollerate me in the passenger seat of the car! I’ve had my anxiety since the onset and don’t see any relief soon.

I take deep breaths and consider whether or not I am over reacting. One night I did a locator on my son’s cell phone because he didn’t answer and made my husband drive around at midnight until 3am but couldn’t find him. He left his phone in his car and fell asleep at his friends house. Grrrrrrr!

The best advise I can give is just to relax and take time to get to know yourself again. When all else fails, read a really good book and have a glass of wine! lol

[FindingMe]

in reply to: Physical and Pyschological effects of GD/TED #1062709

I have been a hermit for three years now. My labs are great and by now it is… what it is. I understand that there will be remission from time to time. It will take at least 3 eye surgeries and nothing is guaranteed – at this point I really don’t see me going through it.

I don’t want to hide anymore!! I am tired of feeling embarrassed, less than and I don’t want to make any more excuses! I want to shout that I have GD/TED!! I want to make plans with friends, neighbors, church functions and family – have a quality of life and stop feeling ashamed. Why should I have to be so selective and careful of what plans I make? Just because I have GD/TED does not mean I shouldn’t have a quality of life like everyone else.

I was hoping for some words of wisdom from others who have chosen to live life to it’s fullest with GD/TED. There has to be others that must cancel plans from time to time. For example, I can’t be the only one who can’t drive when it rains.

I understand it’s not a well known disease and I don’t mind educating people – I am just looking for some uplifiting words to share with others when I can’t follow through on something or have to cancel plans.

[FindingMe]

in reply to: DRIVING AND TED #1063048

I have periodic double vision and can’t look up, down or side to side. On top of that I have very dry eyes and I am extremely sensitive to sunlight, street lights and some overhead lights. At night, it’s difficult to see past the head lights of on-coming vehicles, I hate the emergency vehicle/tow truck lights, I’m basically blinded every time I approach a street signal light until a few seconds after I pass it and you don’t even want to get me started on detours! I absolutely do not drive when it rains and will only drive at night if it’s an emergency. So basically, unless it is a sunny day with my dark shades on – I can’t drive and, even then, only a few miles going preferably under 40mph – good thing I never bought a sports car! Oh, and did I mention…. my husband and kids would very much like to gag and blind me when they drive me places! lol

I have seen several different doctors and I am over it! I had one doctor state I should not drive. One doctor said to only drive when I felt comfortable and to judge for myself. Another doctor suggested I was exaggerating my condition and didn’t see any reason why I couldn’t drive – she told me to just close one eye when I see double!!! Can you believe all these doctors stated they were a specialist of Graves’ related TED!

The last specialist I went to stated I would need 3 different surgeries by 3 different specialists. Personally, I just can’t go through another surgery – no guarantee and I don’t think I could handle another disappointment. After years of college and work experience, I had to quit my profession. It’s been rough trying to figure out what to do with my life when I’m limited to what I can do versus what I want to do!

[FindingMe]

in reply to: Support Group Leader Training #1066875

I would be interested in helping someone start a support group in Virginia.

I live in the Hampton Roads, Virginia area. I had an advanced case of hyperthyroidism that went misdiagnosed until my body was screeming "Graves’ Disease" and one very large goiter. I had a total thyroidectomy in Feb.08 with too many noduels to count. I continue to suffer from have TED.

My doctor explained that after surgery I would start my medication to replace my thyroid and that everything will slowly return to normal. I’m still trying to figure out his definition of "slowly." After almost 3 years, I continue to suffer from the majority of the side effects I had prior to surgery.

I am now in the stage of acceptance and learning to cherish the good days and make the best of the bad days!

Unfortunately, those bad days would make it difficult for me to start a support group alone but I would be willing to help. It would have made a huge difference in both my life and for my family if I had received more informative information. Information that I still struggle to find and understand.

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