[Anonymous November 20, 1996 at 6:21 pm Post count: 93172]

#1058150

Claudia,

Aren’t you the lucky one?? Crones and Graves what a deal. Both are autoimmune
diseases so it is not surprising. Only you can determine what corse of treatment
you should follow. Some of the questions I would ask would be:

1. Could I try the PTU route or would the crones effect the absorbsion of the drug
into my blood stream.

2. What effect will the GD have on my Crones (GD can cause loose stools this may be
a concern of theirs)

3. If I do elect for the RAI or tyhroidectomy what would my Crones do to the absorbtion
of the synthetic thyroid hormone pill.

4. I would want a second opinion of an endocrinologist who has a good knowledge of Crones
and Graves. One can deffinetly complicate the other.

5. Go to the top of the BB and go to the Graves disease page for links to other sites that
talk about GD. Read the FAQ on our NGDF home page and take notes to ask the Doctor.

I have relatives who have Crones so I know what you are going through. One other place you
may wnat to look is at http://www.support-group.com then click on support groups. There is one for
Crones disease. Archie and Annette set it up and they are the same folks who did this BB or us.

Let me know how you make out. I am really interested in hearing what they have to say.

REgards,
Jake george

[Anonymous November 21, 1996 at 4:29 pm Post count: 93172]

#1167812

I can’t thank you enough for responding…and before my appointment. It seems the crohn’s and graves complicate each other. That is why they recommend ablation. I guess I can handle one more pill a day IF it will get me back to normal. Also, according to the gastro man, the side effects of the drug therapy (they think) will complicate the crohn’s. My HMO will not authorize a visit to an endo since it was diagnosed and is treatable at a FP level. However, the gastro man is going to consult with the top endo man in town on the outside chance he recommends an alternative treatment procedure. If this thing is as simple as this, why doesn’t everyone opt for I131? Obviously, it’s not, is it. I will hear from the gastro or the FP concerning what’s next (treatment). Since both conditions facilitate weight loss, I assume this is why they are suggesting total ablation with I131.
Thanks again, Jake.
Claudia

[Anonymous December 6, 1996 at 3:58 pm Post count: 93172]

#1167813

help my doctor just told me today that i have graves’ disease….
can anybody tell me what to expect????
I’ve got the hyperterioide and the blurry red eyes,somebody please tell what
may lay ahead of me???

[Anonymous December 6, 1996 at 9:03 pm Post count: 93172]

#1167814

Welcome to the group!

No one can tell you just what to expect, Graves’ seems to affect all of us somewhat diiferently.

I recommend you start off by checking the NGDF home page (at the top of this page is a link) and the different links available there to get more info on the disease.

Take the time to go back thru as many of these postings as you can, they are pretty informative. Do remember that a lot of us here are worst-case Gravers. 90% of people with Graves’ have no major problems with the treatment.

Good luck! Bruce

[Anonymous December 7, 1996 at 10:47 pm Post count: 93172]

#1167815

I was just diagnosed earlier this week with Grave’s Disease. I’ve found some very interesting stuff on the Internet but am mainly concerned about my eyes. Does everyone with Graves get the bulging eyes? Is there some treatment to prevent it? Are there methods to make it less noticeable? I realize that this sounds vain but I’ve been hit with a lot of scary information this week and I’m trying to sort everything out in my mind. Thanks for the help!

Lisa

[Anonymous December 8, 1996 at 12:02 am Post count: 93172]

#1167816

Lisa=

No, just a small percentage of people with Graves’ have the eye problems and most of those aren’t too serious.

There is nothing you can do to prevent having eye problems, just don’t worry about it! If you do start noticing some changes with your eyes, get them checked by an Ophthalmologist so he (or she!) can watch for any major problems.

Usually if you do begin having Graves’ Ophthalmopathy, there is not much they will do for it unless the sight is threatened, as mine was. The eye problems will usually subside within a couple of years but but regular exams are needed to watch for complications.

Bruce

[Anonymous December 8, 1996 at 7:03 am Post count: 93172]

#1167817

Hi, Lisa. I, too, am dealing with the fear of the Graves going into my eyes. My mother has Graves, with the bulgy eyes, and the day after I was diagnosed, I was seen by an opthamologist. The information I got from him was not particularly heartening, but wasn’t altogether bad either. First off, not everybody with Graves gets bad eye problems. Actually, I think the percentages are pretty small. But according to my ophtho there is absolutely no way of telling how much eyes will be impacted. They simply do not know. And, no, there is no treatment available to forstall it happening. If it gets bad, they can give steroids, radiation to try to reduce the swelling. If it gets really bad, there is a surgery to remove some of the bone behind the eyes (I believe that’s what’s involved with orbital decompression). But the eye problems have to go their course, IF they appear.

My endo suggested a type of eye drop, that she said was good for Graves eyes. They work well to get rid of the slightly gritty feeling I get from time to time. And using them, I feel like I’M doing something to help. Psychological, but, who knows??? About the only thing I can figure out to do right now, is to try to keep irritation to the eyes at a minimum.

[Anonymous December 8, 1996 at 11:58 am Post count: 93172]

#1167818

Lisa, I know two women in their 70’s who had RAI for Graves’ about 35 yrs ago.
Neither one of them has any eye problems! Nor did they have any of the trouble with
getting adjusted to synthroid, etc, and have happy, healthy lives. It’s encouraging to me and I hope
it is to yøu, too! Glynis

[Anonymous January 23, 1997 at 12:44 pm Post count: 93172]

#1167819

HI,

I WAS JUST DIAGNOSED WITH GRAVES LAST WEEK. I AM WONDERING IF ANYONE CAN
CLEAR UP SOME QUESTIONS I HAVE. I AM VERY AFRAID, I AM HEARING AND READING THINGS
AND AM NOT SURE WHAT TO BELIEVE AND NOT BELIEVE. HELP!! SUE

[Anonymous January 23, 1997 at 6:49 pm Post count: 93172]

#1167820

It is important to find out everything you can about Graves’ with it freaking you out. So when researching try and pretend you are looking it up for someone else – silly I know but it often works.

KEEP CALM – If you don’t you increase the chances of feeling really awful, making you lover/husband/dog and/or children truly miserable.

Don’t let your doctor get away with not answering your questions. If necessary ring up the office and book an appointment warning them that you want a LONG chat.

[Anonymous January 24, 1997 at 3:24 pm Post count: 93172]

#1167821

don’t worry sue….you’re not alone. I was just diagnosed yesterday and i’m scared too. I wish it were just a bad dream and that i’ll be ok tomorrow. But the worst part is that i’m going to have to wake up every morning worrying just like you.

take care of yourself

kathy

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