New member

Posted February 3, 2000 · February 3, 2000

Debbie,

Thank you. This is a big help. This is going to be hard when

we go to Seattle, after flying there etc., it will be hard to stay

in the waiting room. Maybe I will start with our Boise

rheum. Jana

Posted February 3, 2000 · February 3, 2000

Jenni,

Thank you. I will do some thinking about this whole

issue. I will try harder to listen to my son. His

situation is almost opposite yours.... he says he

feels fine, no problem... until the Dr. says he is

having a flare. If I truely listened to him, he would

just take Prednisone and stay away from anything

medical as much as possible. Thanks, Jana

Posted February 6, 2000 · February 6, 2000

Hi Jenni,

Thanks for your insight on this topic. I'm sorry to hear that you've had

to put up with loved ones second-guessing how you are feeling, based on

a doctors opinion and exam. That's not fair. The way I see it, Josh

doesn't like feeling sick. Who does? He has no reason to say he's not

feeling well, if he is. Sometimes I wish he could be a little more

specific during a flare and instead of saying he hurts all over,

everywhere, to be able to tell me the specific joints or body areas that

are most sore. Instead, I have to go through the long check list and

finally I get to understand that he feels pretty lousy all over but it's

the elbow and knee, for example, that are most sore. When he's got a

high fever and fatigue, his whole body feels achey. Even if I cannot see

visible inflammation in his joints, that doesn't mean he's fine. I

learned the hard way, when he had pleurisy and pericarditis. I take his

word for it, as far as not feeling good. He's also the first one to wake

up and say, gee I feel really good today! I think everything's okay! And

even if his SED rate is still high, if he feels good, I'm happy.

Take care,

Georgina

ChaosPearl@... wrote:

> In a message dated 2/1/00 4:01:11 PM Eastern Standard Time, JANABECKER@...

> writes:

>

> << In all your wisdom, what role do you think parents should play at what

ages? >>

>

> Jana,

>

> Honestly? I have no idea. I do wish they would take my opinion more

> seriously than the doctor's. They have a mindset where the professional is

> always right, and in my experience I've found that's not always true. For

> example, they'll come with me to the rheumatologist and I'll tell him that

> I've been feeling awful recently and my joints hurt and I have trouble moving

> without pain -- then the doctor examines me, says he doesn't see any major

> swelling, and from that moment on my parents decide I'm not having a flare

> and everything's fine, and they start ignoring my complaints of pain. That

> scenario has happened so many times I couldn't begin to count. I've tried

> talking to them about it, talking to the doctor about it, talking to them and

> the doctor at the same time, even professional therapy. It didn't do much.

> At this point, the best I can do is settle back and make my own decisions

> about my health care, and try not to feel too guilty if I happen to disagree

> with my parents. It was a HUGE relief having my 18th birthday. They can no

> longer sign the consent form that says " Take our daughter and do whatever you

> want to her even if it's incredibly painful\expensive\unnecessary and she

> disagrees " .

>

> cheers

> Jenni

Posted March 6, 2000 · March 6, 2000

Anne,

Welcome! I too suffer from Graves and TED. At times, I think the TED is

worse than the Graves. It has caused me much distress. In fact, my

self-confidence is very low. My appearance is changing and there is nothing

I can do. I have found relief in yoga. Relieves stress. I do not take the

supplements. I opted for RAI in May 99. After many months, I am feeling

better and almost like my self. If the eyes would just clear up. I have no

cure but, I wanted to let you know I share your pain with the TED. We must

stay positive!

I wish you the best,

K.

new member

>Hi All,

>

>I am really pleased to have found this group, I have suffered from

>Graves' for almost three years now. It started in the first trimester

>of pregnancy and I have taken ATD's ever since with no remission at any

>time. I have managed to escape RAI so far (only because I was

>breastfeeding for a while) but my doc is now really pushing for me to

>have it. I don't understand the meaning of my blood results but maybe

>someone can help me, my last results were T4 = 54, T3 = 5.9 TSH = .01

>can anyone explain these to me. I live in Scotland and I find the

>doctors here reluctant to explain thing in any detail. I also have

>TED which I find extremely distressful and difficult to cope with,

>although my husband says I look fine, I feel really cheated by this

>change in appearance. I was 32 when I was diagnosed with Graves', I

>believe this is quite a common age. I have read 's list of

>supplements and would like to try them but I'd really like to hear from

>anyone who has had marked success with these supplements. Sorry this

>has turned out a bit long winded.

>

>Thanks

>Anne.

>

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Posted March 6, 2000 · March 6, 2000

mary K,

Thanks for your mail, it is good to know we are not alone. You mentioned

that you have had RAI last year - how did you feel directly after the

treatment and did you get predisone cover prior to and after the RAI to

protect your eyes? Are you now hypo? Mail me privately if you prefer.

Thanks Again

Anne.