Graves' Disease Support Group
Graves-Basedow disease is a medical disorder that may manifest several different conditions including hyperthyroidism (over activity of thyroid hormone production), infiltrative exophthalmos (protruberance of one or both eyes and associated problems) and infiltrative dermopathy (a skin condition usually of the lower extremities). This disorder is the most common cause of...
Pam- I get what you are saying... Makes perfect sense. So, here's what I am going to do... Calling this doctor on Monday. Telling him I'm entertaining the though of stopping meds- which is something we briefly discussed. That alone may nudge him into getting those labs. Having the information in front of me will guide me to a better treatment. I will be vocal and more assertive with this doctor. I feel like I have a good grasp to explain my next steps (thanks to you all!) I'm still going to push for that ultrasound, too. I would rather figure this all out now than wait for me to either fall into hypo more, prolong my remission, or to increase those antibodies. I'll post how it goes and my results- FYI- I may bug you guys with a million questions this week :)
A better way to approach the subject is to ask, " Since I am on such a low dose of MMI and my antibodies are still a bit high, what would be the harm in adding a small dose of T4 so I could get up closer to my optimum FT4 levels and also be more stable, since the two meds together would help that.
There really isn't an official term for doing things this way, though one internet slang term is Add Back Therapy.
They do this routinely for little kids because once they get on the right dose, there are fewer labs, and children and needles for blood draws don't always mix so well. It seems to me it's easier for the parents and kids too, because one of the biggest problems children have is the doctor tells mom and dad the kids levels are "normal"...though we know that leaves lots of room for interpretation.
Mom and dad then too often get into a loop of blaming the child's behavior on the child's defiance or _____, not realizing the poor kid feels sick, 24 hours a day and is doing the best he/she can. Graves' kids break my heart sometimes. Their parents absolutely believe it's all a behavior problem. Nothing I say seems to change that, then sooner or later some mom somewhere jumps in to the conversation and tells the other mom her version of how to make RULES work. And what sort of punishments work for her. sob.
Why should they trust me or the links I share, their doctor said so...
I have learned it's better to just not post to them, until I see the child is really in danger. Because I know it's going to hurt me a lot. My weak spot. I still remember everyone of the little ones, who's moms I've talked with.
Now doctors are right about some of the internet Graves' sites. There are lots of really bad ones out there. But folks eventually sort themselves out. Then they show up in one of our groups like this.. which is part of the original e-mail list where I first met Elaine ( the one you guys don't remember because a pro-RAI group managed to get it shut down with a threat of a lawsuit, .because we pointed people to pub-med articles and such showing RAI is not the best thing since sliced bread, and is not risk free. So much for trying to shut us up. And none of us ever thought the owner of that list should spend the $$$ to defend herself. It just proved what needed to be done, really needed doing.
( this was before any of you oldies here had been diagnosed so you may not have heard that part of the story before )
It certainly cemented my position. This is not rocket science. We can educated ourselves and we can take back control of our own lives. Everybody else that has an opinion about what you should do has the ability to leave at any time if they don't like the end results.. They are not the ones that wake up everyday in your body.
There were some existing members, then more of us, then eventually we have fanned out and joined smaller groups. Now all of you help each other, and eventually some of you here will eventually fan out to help others. Our take back your own power philosophy grows.
As far as links we share. By now those of you that have been here for a bit know the links we share are reputable. No flashing pop-ups with magic cures. LOL Heck, you guys are smart enough you know when something is scientifically based or not, or you probably wouldn't be here in the first place. :)