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in reply to: Looking for stories #1074649
We have a person who coordinates the childfren contacts. If you will get in touch with me, I will put you in touch with her. She may be able to forward your questionnaire (or how ever you are doing this) to them. nancyngdf@bellsouth.net.
This is a WONDERFUL idea, and one that has not been attempted as far as I know. If there is any way I can help, please let me know. Would love to be kept in the loop.In some cases, a person is not a candidate for ATD’s because their Graves’ is just too advanced. You are right, however, in that it is a very logical choice.
The excess thyroid hormore acts like adrenaline, and makes our brains act as if they are teflon coated. Nothing sticks. You probably already use one, but use your Blackberry (I used to say Day-Timer) and write everything down. No abbreviations – you will forget waht they stand for–and no sticky notes. They get lost. Get your secretary to help become part of your frontal lobe. Good luck.
in reply to: Need help understanding levels #1074076Ideal standards of care would test TSH, Free T4 and Free T3. Those last two tell you what is free and available for your body to use, rather than the total, which may be bound to calcium, iron, estrogens–just to name a few. That’s why you have your labs done at the same time every time, and take medicines at the same time, and thyroid by itself.
in reply to: Support Group Leadership Training Feb 26-28 #1074121If anyone ever wants to come to support group training, please make sure I have contact information: Name, address, phone and e-mail. I am not having trouble with spammers, so you can e-mail me at nancyngdf@bellsouth.net.
Thanks for keeping us up to date on how you are doing. You have to listen to that voice deep inside. Also, if the surgeon said you should do OK on RAI, that seems like a good recommendation.
Also, thanks for giving us some of the credit. It is very nice to hear back from people and get the feedbacvk that we helped in some way.
And yes, you may put the website on a tee-shirt. Send a picture!in reply to: running with untreated hyperthyroidism #1074039I think your body will stop you from running until you are stabalized. Of course, the best example of running is Gail Devers, the 2X Olympic track star. I have heard from a good number of runners over the years, and as best my memory serves me, they have all returned to running–AFTER they got treated and stabalized.
The only case I can remember that upset me, was from a call from a parent whose child ran track, and the coach was continuing to push the student–saying they were fine, just getting lazy!in reply to: What if you do not treat? #1074022My grim response to this post is that untreated Graves’ can be fatal. Treatment is not an option, but the choice of treatment is. The thing that causes death is one’s heart. Get thee to a doctor!
in reply to: TED symptoms and temperature #1074090Dear Rob,
Where in Australia do you live? That’s HOT! There are two Australian Thryoid Foundations, and one of our medical advisors is down there..
Absolutely, you need to be using artificial tears as often as possible. Anything you can do to keep the sun and wind out of your eyes is important as well. Wearing sunglasses (the kind that wrap around), hats, NOT sitting in front of the air conditioner or fan will all reduce the drying effects of the heat and lack of humidity.
If your eyes are not closing when you sleep, they will be even more dry. You will have to ask someone else to check for you, unless you are waking up with the red stripe across your eyes that shows exactly how much they were open. If that is the case, you will have to figure out how to keep your eyes closed at night. Patches, silicone tape, bandanas, and saran wrap are a few of the solutions. One of the eye ointments will help keepyour eyes lubricated at night.A long time ago, my doctor figured out that one dose was too high, and the one next to it was too low, because I would react similarly to what is going on with you. Periodically, he would figure out a regieme of different dosing every other day that would equal the "dose" that would be in the middle of the two. I remember that he wrote a letter to another doctor at one time that read "…she is sensitive to 6/1000th’s of the dose." W don’t have to do that any more–knock on wood–you guys have been talking about pretibial myxedema, and mine has come back!
in reply to: Normal Levels-Still feeling horrible! ADVICE???? #1074634You got excellent advice from Bobbi. If you are seeing people on both coasts, it might be a good idea to keep a copy of your lab results with you, as well as faxing them back and forth to whomever you are seeing.
Second opinions are always a good idea, until you reach the point that you are "doctor-hopping". Whatever the cause, you are certainly not feeling, nor functioning, in any kind of a normal mode.
I am not sure I understand "sub-clinical" hyper- or hypo-thyroidism, but you might ask your doctor about that concept. It generally means you have symptoms, but bloodwork does not confirm it–yet.in reply to: RAI and Exophthalmoses #1074009Dear RAL,
I am sorry to hear about your son. Send me an e-mail and I will send you the paper about Students and Graves’. (nancyngdf@bellsouth.net) It will give you lots of information and hope about kids and Graves’ in general.
If he is already showing signs of eye problems, there is a lot of research that shows that RAI can aggrevate it. It will not CAUSE eye disease, but can make pre-existing eye disease worse. It is a sort of tricky thing that your doctor must explain and help you plan for. The prednisone might help. There was a time that they did not even know to try prednisone, either before the treatment, or immediately afterwards. The thought at that time was that thyroid levels were the thing that caused the eye problems. Thank goodness they know more about it now.
Your son is old enough to be involved in the treatment plan, but he has to have good information (as do you) to participate in the decision-making. Children and young adults are treated with ATD’s, RAI, and surgery. It is not a flip of a coin, but a seriously considered treatment selection based on the navigation of the tests, preference (yours and your son’s), and clinical judgement. The latest quote I heard from our Medical Director is that "…defining the parameters of the treatment is the culmination of the professional’s aggregate experience." Translation: get an experienced, compassionate doctor that you can trust, and listen closely!
We are here to support you!!in reply to: Does anyone live in the Charleston, SC area #1074065Hi Christa,
If you will get in touch with me, I will try to put you in touch with others in your area. That’s one way we help with support groups. We have an excellent data base, and can search by city, area code, state and ZIP codes. I know a couple of wonderful doctors in your area. e started to have a support group in Charleston many years ago. There were over 200 people at the initial meeting. Sad to say it did not get off the ground. I have learned many things: have the leaders; have them trained; have the next meeting date; have the place–all of those need to be in place first! My e-mail is nancyngdf@bellsouth.net.
in reply to: 2009 Conference? #1074228The dates for the 2009 conference are October 16, 17 and 18th. We will know the city in about a month or six weeks, but is WILL be East Coast. I am hoping to be able to drive there!
in reply to: Newly Diagnosed Today with GD OPTHALMOPATHY #1074234pizzicatto
In answer to your last question: YOu are going to have Graves’ from now on. Your phrase of "will it take proper medication, proper diet and exercise" is perfect. One way to think of it is as if you had insulin-dependent diabetes. A diabetic can be fine, but they still need to monitor and take their insulin, and need to stay under the care of a competent physician, and they need support. We try really hard to provide the last part. Welcome aboard.
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