AnonymousOctober 25, 1998 at 8:15 pmPost count: 93172
I can understand being at your wits end and the frustration you are experiencing. Please e-mail Jake and he can give you all the info you need to help your daughter. We have referal lists for doctors available to us, support group info, etc.
The reason for no PE is due to increase heart rate with uncontrolled graves and the risk of heart attack or thyroid storm. Do not let these words frighten you, please. If you are not pleased with the doctor(is he/she and endocronologist?), then you may want to search out one that can help you and give the info you need.
Let us know how we may help and please, do e-mail us. Jake has had graves for 8 years now and been through the gammit.
JAN, National Graves Disease Foundation
on-line facilitator(and jake’s spouse)AnonymousOctober 25, 1998 at 11:19 pmPost count: 93172
My 13 yo daughter was diagnosed with Graves in August. She was initially put on 200 mgs of PTU Daily. She was restricted from PE and any other physical acitivities. We went back one month later and everything was EXACTLY as it had been the month before. They increased her meds to 400 mg daily and then I called back and asked for a dr.’s note for PE as I was sure they would still restrict her as nothing had changed. Now they say that she is able to go back to her PE class AND play basketball. I am confused about the whole restriction from physical exertion and I am really not that thrilled with my DR.
Maybe you could help me……I have NO CLUE what to do to help her. I have been researching Graves and cannot find a lot of info that I can understand. I am also wondering what kinds of things should I be asking my DR to do for her and what kinds of things should I expect from him. After they increased her medication they said that she did not need to be seen for 2 months.I am just so lost in my efforts to try to help my daughter.
I know that I am rambling but I am at my wits end and I have nowhere else to go. I can’t get anyone to help me with this. I have so many questions and feel like no one to ask about them. We ar elooking for a different dr but that is proving to be a difficult task in rural Iowa. ANY help will be appreciated.
AmyAnonymousOctober 26, 1998 at 12:51 amPost count: 93172
There must be a larger city in Iowa and I would search for a Pediatric Endocrinologist as I have found that teenagers symptoms are not like many of the adult symptoms. I think though that the current therapy that the dr has her on is a good first step and hopefully she may go into remission on the drugs… One very important question for your immediate attention though is….did your dr tell you to watch for a sore throat? and tell you to call him to have a blood test done if that occurs??? if not call the office and ask them if there is anything that you should watch out for while she is on the antithyroid meds . Let us know what he says!
Mary PAnonymousOctober 26, 1998 at 6:34 amPost count: 93172
If you do not live near a bookstore, there are sources of retail books on the web — Barnes and Noble has one, a group called Amazon has one, and I think there are others. From any of these you should be able to order a book called THE THYROID SOURCEBOOK by Sara Rosenthal. (Amazon is http://www.amazon.com) This book is written in layman’s language, and while it deals with all types of thyroid disease problems, it has some very good information about Graves’. There is also a very good book written in understandable English (grin) by three doctors called something like YOUR THYROID: A Home Health Reference by Ridgway, Cooper and ?. I cannot find my copy of this book right now (and I am about to go on a panicked search!), but that is close enough to the right titled for you to be able to find it, I think.
To search out other information: Here is the “address” of a very good source of links for a lot of the search options on the web: http://www.ticon.net/~cyberian/net.htm
The more you understand, Amy, the better you will feel about things. But give yourself some time. It can seem very complicated at first, but as you become more familiar with the ideas and concepts, you will understand more and better what is going on with your daughter’s thyroid and the treatment that she is being given.
If you want to email me to “talk”, please feel free — but please use Graves’ in the title of your post, so that I will read it (I ignore mail from sources I do not know).
Wishing you and your daughter good luck and good health,
Bobbi — Bobbi1436@AOL.com
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