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in reply to: Graves’ Disease Awareness Webinar! #1186464
Thanks for doing this program. It was very helpful
in reply to: daughters thyroid issues #1183913Vicky,
I was able to reach the specialist at the University of Michigan. I will see her at the meeting in Orlando (in fact, she is one of the speakers at the patient forum sponsored by the international thyroid committee). We will be in touch about referral information. I just wanted you to know that we ARE here for you.
Take care,
Nancyin reply to: Another #greaterthangraves story #1183964Triple congratulations You are an inspiration!
in reply to: daughters thyroid issues #1183912Vicky,
I just sent you a private message. Your daughter needs an endocrinologist who SPEIALIZES in thyroid disorders…sometimes they are hard to find, depending on where you live. Take care,Nancy
in reply to: Things my Forum Friends have taught me … #1183954What a DELIGHTFUL post. I have printed it out for my scrapbook–which goes back to when this forum was started, over twenty years ago! I have often pleaded with those who posted here when they were in pain and chaos to return when life improved in order to give others HOPE!
Remember: Most people with Graves’ are easily diagnosed and treated, and go on with their lives. Those who are searching the internet (and now Facebook and Twitter, etc.) are those who are NOT among that much larger group that is doing well. We need to remember that, and stay available to those who still need the support and encouragement.
Take care, Nancyin reply to: Emotions still not close to normal #1183934The emotional aspects of an overactive thyroid can be life-disrupting. Maybe I should say “are” life disrupting. You can go to the part of the bulletin board “about graves'”, and scroll down to “Patient Bulletins”, and find the ones about the psychological aspects of Graves’
First of all, your symptoms are NOT in your head. Excess thyroid hormone (which yours are) act like adrenaline, and cause what we call “anxiety” “nervousness”, and “overreactions”. Your doctor is right to be slowly decreasing your dose. It takes several weeks for the changes to be picked up by your body.
Let me know if you would like me to mail you some information.
Take care,
NancyI am the one that is eager to commerate our 25th year. As Kimberly noted, almost everything we do is “free” – mini-conferences, this forum, patient support and information. However, that doesn’t mean that all these things don’t cost money. I had no idea how much it costs for internet sites, newsletters and postage, support group expenses…the list goes on. What I had hoped for was a 12-page newsletter to go to everyone with whom we have had contact, with lots of pictures, and information about all the [wonderful] things we have done over this past quarter of a century. The basic price for this is (gulp) $16,000 (for over 14,000 people. I have never raised more than $0.25. If you are interested, please contribute. If you have stories or pictures, please send them tome “nancyngdf@gmail,com”. I want to make it a Family Reunion, and invite all of you to come home.
I have been fortunate to attend many of these Patient Forums, and strongly urge you to attend. There will be doctors speaking briefly about Graves’, Hypothyroidism, Cancer and Pregnancy (among other things), and then we break into groups, and you can ask questions (and get answers) from experts, as well as other patients who have “been there, done that”. TFI members from France, Australia, Finland, Denmark, Germany, Canada, Spain (I think I got everyone) will be there. You will get more information in this two hours than you will get in a couple of years!! Please come, and bring family members!
in reply to: Eye symptoms #1182303Cindy,
Does your eye doctor see a lot of Graves’ patients? It seems strange that taping hasn’t been mentioned. Another thing you can do is to find a good pair of swim goggles to sleep in. Not really comfortable (not at all comfortable), but they work. AQUASHURE is one brand. They are at big sporting stores.
I order my MEPITAC from Mercy Surgical 800-637-2950. #2983000 is the 3/4″ tape. It is a silicone tape, and doesn’t rip your skin. I cut the entire box into 2 1/4″ strips. I remove the backing, and put one piece on the back of each hand. I put the goop in my eyes, and go to bed. Once I am in the bed, the tape goes on my face.
Put one end over the middle of your eyebrow, push your cheek up (which will close your eye, and anchor the other end on your cheek. If you will put the palms of your hands over your eyes, the heat from them will help make the tape stick even better.
If I am not using the goop (the lubricant of the day), the tape can be taken off the next morning, the end taped to the mirror, and re-used the next night. That was one of the medical advantages of the silicone tape…it can be removed, the IV (or whatever) adjusted, and re-attached. That means you can lift the bottom up when you have to get up during the night, and re-anchor it when you go back to bed.
The tape is soft enough that it only takes a few minutes to forget that it is there, and you can sleep comfortably. Not very sexy, but great in every other way.
Take care,
Nancy
in reply to: eEmployment #1182291The employment question can get tricky. I have too make folders from patients (mostly male) and/or attorneys about folks that have been terminated over the years. Most of them are military–i.e. Federal employees.
Usually, once Graves” is diagnosed and treated, things fall back into place reasonably quickly (not that most of us on here would agree, but we are the exceptions rather than the rule), Just make sure your bases arecovered–meaning that you have a GREAT endocrinologist, and a good working relationship with Human Resources.
Take care,
Nancy
in reply to: Eye symptoms #1182301Hello, and welcome to the frustrating world of thyroid eye disease. As you have figured out, it is pretty random. The [separate] antibodies are easily triggered, and mostly unpredictable. Part of what you are describing is related to eye strain and dryness [=”stress”]. We need enough light to see, but not so bright that it produces a glare; long hours at a computer when we are already not blinking enough, the change to Daylight Savings Time so that we are driving to, or from , work with more glare. It is a constant challenge to keep ahead of things. I actually have a small humidifier on my desk (which drives the IT guys nuts), and sometimes have the alarm on my phone set for every 15 minutes to remind me to use eye drops (you would think we would remember…not so much!).
The double vision is on its’ own course. The dryness, grittiness, etc., is usually one result of dry eyes–and we literally can’t see THROUGH our eyes. It is not that our vision itself has changed, but our corneas are scratched. (Think of badly scratched lenses on glasses. Thank goodness eye tissue heals itself quickly.
Are your eyes closing at night? That’s when we need someone who can look at us with our eyes closed and tell us if they are shut all the way. If not, you need to look at taping or patching them. Both Shirley and I are on the marketing committee for MEPITAC tape.
I hope things “cool off” for you soon, but whether or not it is soon, it WILL cool off.
Take care,
Nancy
Shirley,
In theory, it doesn’t matter, since it takes so long to get a blood level (like six weeks). For compliance purposes, either do it like Kimberly suggested, or take the two doses on the weekend–whatever it takes to maintain consistency.
Take care,
Nancy
in reply to: Gaah! Itchy again #1182225Why don’t you give the doctor a call this week? It makes me nervous that you won’t get in there for two weeks.
Take care,
Nancy
in reply to: orbital decompression surgery #1182231Another way to elevate your head is to put wooden, or even concrete blocks under the head of your bed. I didn’t get all the way to 45 degrees, but you DO need elevation. Also, don’t wear slippery pajamas–you will slide to the bottom of the bed.
I had a couple of “Dog-Bone” pillows that helped immobilize my head.
I lived in my recliner for a week.
A soft, calm cat, purring in your lap, is extra comforting and calming.
Take care,
Nancy
in reply to: Graves’ rearing it’s ugly head again #1182056we all spend a lot of time asking “Why?”. You didn’t do anything to cause Graves’. so stop beating yourself up! We have all been there, done that, and some of us travel back there regularly. Focus your efforts on finding a good doctor and making good decisions. We will be here for you.
Take care,
Nancy
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