Something unusal and rare... but a plea for help and understanding.

[Kilaneko]

Hello, I'm new to this forum and I'm new to the idea of Graves disease. I know that this is something that is not to be taken lightly. First off, I am not the one with Graves Disease...but please hear me out before any judgement.

My brother is 26 years and he was just told that he has graves disease... toxic something-er-other and his blood is extremely high. About two weeks ago, he's had something like 4 heart attacks.

I've done some research and I fully understand the symtoms and how they go and what not. On the 17th of this month he is going for the RAI treatment.

...now, with a few of those points and with everyone knowing about this... my family and I are having a major disagreement over my brother. I work with people who have developmental disabilities and I've learned that regardless of what a person has, they need to be able to do a few things. They need to achieve certain feelings and/or goals in order to keep the feeling of dignity, pride, especially humanity with everything that is and will be going on... since so much is being pulled away...or in my brothers case taken away.

My family wants to pull video games away from him. They don't want him watching TV, playing computer/video games, hunting, and more.

Okay, Hunting I understand because my brother could shoot someone... and well that wouldn't be very good. Since hunting is like driving and well he can't drive any longer due to this.

So, TV, you're sitting there doing nothing. sure you might get into what is going on but thats about it... now what about video games... its the same thing... Which leads me to my question, Should someone... or anyone with this disease have their rights and freedoms and things a few things that they enjoy pulled away from?

When I found this forum I figured that maybe there'd be some people here who would know how to help when it came to restrictions of a person with this kind of disease.

[GD Women]

Why are parents in a 26 year old mans business? He is a big boy that should be able to make decisions for himself?

That aside, it is best for people with Graves' disease to be as stress free as possible and especially up through a few weeks after RAI. A week or two after RAI, the body gets ride of extra stored thyroid hormones that can cause hyperthyroid symptoms and in some cases thyroid storm however rare. However with your brothers back ground of already heart issues could complicate matters even more. So it is best not to be too stressed or excited by whatever means. It is also wise to keep stress to a minium thereafer. As you know stress is not good for any type of disease.

I would ask his doctor about your concerns. The doctor knows your brothers health better than anyone and how such said activities would effect him.

[Kilaneko]

Thanks for the reply.

My brother knows his limitations for the most part and I know that my parents are over protective and caring when it comes to things like this.

I gave the family the suggestion that was provided, so, again thank you.


Just a few more questions that rose.

What foods can he have and foods he must stay away from?
What foods are good for him and which ones are bad but can be acceptable once in a while?
Would he be able to return to work one day?
What kind of personality should/could be expected to rise after the RAI?
What is the success rate of RAI?
How much of a regular life would he be able to live?
Will it go into remission or not?
Is it true that this is extremely fatal or is it something that is fightable just not curable?

[GeekLady]

Hi,
I think it is really sweet that you want the best for your brother. I had the RAI treatment for Graves in May and it is normal to go from being hyperthyroid to hypothyroid several weeks or months after. I am experiencing the hypo now, and just started on a med for that.
A few days after the RAI I felt so much better: my heart was no longer racing and I felt calmer, could concentrate better and I felt my muscle tone was coming back (along with my fingernails and hair). I had the treatment on a Friday and since I work at home, I tried to get a little work done but felt awfully tired so I gave up on it and just rested and got into a book.
Now - in August, I'm having all sorts of muscle pain and cramps when I exert myself (basically just walking at a brisk pace or trying to do major housework), fluid retention, fatigue, and more weight gain so they started me on the thyroid hormone replacement this past weekend. I'm probably expecting too improvement much too soon, but I am still having some pain when I take a long walk. And I'm somewhat depressed right now. So right at this moment I'm regretting the RAI but hopefully after the med has had time to work, I'll feel more positive and more like I did immediately after the RAI.
There was no mention of dietary restrictions, except that after taking the Levroxyn (not sure if I spelled it correctly) - the thyroid substitute hormone, I need to wait an hour before breakfast and it is recommended to wait four hours before taking multi-vitamins, antacids, iron supplements, etc. Since you mentioned the heart problems, not sure but he may need a diet geared towards lower cholesterol, for example.
Mood swings - I went from being sort of hyper (but with little or no energy) or jittery, to panicky, to calm and serene, to a low point upon going into the hypothyroid stage.
I don't think I'd recommend taking his video games away, if that's part of his usual routine. He may or may not be able to concentrate as well and might not want to use them anyway.
Hunting... honestly, I'd probably try to dissuade him from doing that for a while.
I hope this helps, and wish your brother the best.

[GeekLady]

How much of a regular life would he be able to live?
Will it go into remission or not?
Is it true that this is extremely fatal or is it something that is fightable just not curable?[/QUOTE]


It isn't fatal as long as it is treated. The Radioactive Iodine treatment usually is a one time dosage, although I understand that a few people require another treatment if the first is unsuccessful.
What it does is destroy the thyroid so completely that the body no longer produces any thyroid hormones. Since these are necessary (but not in the abdundant amount produced by someone with Grave's disease), they have to be replaced in pill form. So after the treatment at some point, he will need to start taking a daily pill for the rest of his life.
That's basically the cure. There are other options, such as anti-thyroid meds which might or might not help with a remission, but everyone is a little different... In my case, and at my age (51) , RAI was most recommended. Left untreated, I might have had a stroke or something.
No dietary changes except that I am gaining weight so I'm trying to limit fats, carbs, sugar, etc.
The tricky part now is to get the replacement thyroid hormone to the right level - too much and a person can become hyperthyroid again, too little and they're hypothyroid.

GeekLady

[Kilaneko]

Thank you for all the information that you all have provided me. ^_^

My brother's heart rate dropped down to 73 this past week... my family was teasing him and my sister in law, since my sister in law was down in Stettler for the week. We told her that she was causing him too much stress since his heart rate dropped so much since he was with us. ^_^

Anyway, I've noticed that the past week while it rained, my brother was just fine, but when it brightened up and the heat increased over the weekend he started to show aggression. Does the weather play any part in it or is it just something that deals with my brother?