[Anonymous August 14, 1997 at 5:45 am Post count: 93172]

#1054208

My neck is huge no test results in yet.How does everyone calm themselves?

[Anonymous August 15, 1997 at 2:00 am Post count: 93172]

#1158147

I smell lavender oil. Seems silly, but it works for me whenever I’m stressed or upset about something.

Anonymous

October 27, 2000 at 6:20 pm

Post count: 93172

#1158148

Does anyone know of the potential hazards, long or short term, that may occur due to Grave’s disease? I was diagnosed with Grave’s by a very impersonal doctor who scared me to death and since then I have thought that I have every cancer and disease in the book. I can’t help thinking this way because I was such a healthy girl before I started losing weight to find it was due to Grave’s.
Is there any high risk factors involved here?
What can I do to make my body react faster and get better soon? I remember seeing a lot of messages posted regarding diets to consider.

Does Hogkin’s lymphoma’s odds become greater with the diagnosis of Grave’s disease??? I am so scared and no one has yet put my mind at ease.

I need to stop thinking negatively, that’s for sure, but I’ve had such a bad experience that I have no idea where to go from here.

Thanks,
Pegah

Anonymous

October 27, 2000 at 6:34 pm

Post count: 93172

#1158149

Hi Pegah,

I’m sorry your doctors have been so unhelpful, you’re smart to be looking for more information than they’ve given you!

There are a few things to consider when you’ve been diagnosed with Graves’ disease. The first thing is that anyone with *any* autoimmune disease has a greater likelihood of contracting another. Doesn’t mean you will. You might. It’s just something to consider — I haven’t done a lot of research on all the autoimmune diseases, but if you were very interested you could do some websurfing. I believe there is a site for a national autoimmune association — it may even be a link on the NGDF website.

There are a couple of conditions that can occur along with Graves’ disease — Thyroid Eye Disease (the bulgy eyes) or Pretibial Myxedema (rash on your shins, looks like purple orange peel and itches, from what I’ve heard). Those are the only conditions that come with Graves’, and even they don’t come with it all the time. I think the figures are something like 15% with the eye disease, I’m not sure about the Myxedema but I do know it’s a small percentage.

There are certain effects that could be experienced due to being hyperthyroid for an extended period of time, if you went untreated, and those can include osteoporosis, heart disease, muscle damage.

If you read through this board, you’ll see a lot of guesswork as to what is and is not caused by Graves’. Some doctors disagree on these things, so we discuss them here. You can make up your own mind about the “patterns.”

One thing we all agree is that we get “brain fog” that doesn’t even seem to completely disappear when we have been successfully treated. Forgetting things, not connecting all the pieces of the puzzle at once, Jake and Jan call it the “train has left the station.” Good name for it.

I have never heard of Hodgkins being related to Graves’ disease.

On the NGDF home page there are recommended books that are VERY useful, especially if you’re inclined to wondering what is and is not related to Graves’ disease. They get a small cut if you purchase the books by clicking through their website, so if you’re interested in getting the books, make sure that’s how you do it.

Information is power! Keep reading, learn all you can. GOOD LUCK!

-Ski

Anonymous

November 1, 2000 at 6:33 pm

Post count: 93172

#1158150

Dear Ski,
Sorry for a lack of a more prompt response. Do you, too, have GD?
I was wondering about this brain freeze as you call it. I am a pre-med student and I have actually felt a lot better after being treated, because before being treated I felt like I had “brain freeze…”
Oh well, is it also normal to feel a tightness in the throat area when being treated with Tapazole…?
I have these wierd feelings that I am going to die, I guess it comes with being diagnosed with a “disease..”

Does GD decrease life expectancy or anything?

I am a college student who just got in a car crash, had my wallet stolen , all in a week and have no money.

Are any of the books free?

I think you’re right… I really do need to get more informed.
Thanks again,
Pegah

Anonymous

November 2, 2000 at 6:15 pm

Post count: 93172

#1158151

Hi Pegah,

Indeed I do have GD — my symptoms began almost exactly two years ago, I was diagnosed 3 months later (pretty speedy, really) and I had RAI in April of 1999. I’m currently on no meds at all. My T4 level is within normal range and my TSH is undetectable, so my doctor thinks I *might* have to do another RAI. Luckily for me he’s willing to wait and see a little while longer since my levels have been the same for months (not going up or down).

I noticed that, when I was hyper, I’d have a million thoughts running through my brain every second and I was unable to corral them or control them – here one second, gone the next, no memory of them having been there. Since I came away from hyper, I feel differently — as though I can’t quite “get” them sometimes. Just out of reach, on the “tip of my brain,” as it were. Sometimes I function just fine, and sometimes things slip through. I’ve resigned myself to the fact that unless it’s written down, I can’t count on remembering. (Then of course I must remember that I have something written down and where to look for it! Yikes.)

I can’t tell you about a tightness in your throat while on Tapazole — I was put on Tapazole for a short time (my doctor said it was to “kick” the TSH into production) and didn’t experience that. If I were you, I’d talk to your doctor about it.

Luckily, with proper treatment, Graves’ is not a fatal disease. I can imagine that some of your fears may be due to being diagnosed with a “disease,” and some of them may have to do with the name of it!!! Unfortunate for us that it was discovered by Dr. Graves…. Couldn’t it have been Dr. Shaky?

As far as I know, GD does not affect life expectancy at all.

The books are not free, but with membership to the NGDF, you can get 6 of their bulletins for free, and that’s a great deal! There are some terrific topics, lots of great information.

Getting more informed will make you feel at least more in control.

I’m so sorry to hear about all your recent stressors! This could certainly have an affect on how you’re feeling right now — extra stress exacerbates ANY disease, and (I think) especially GD. It’s so easy for us to get all worked up….

Wishing you LOTS of LUCK in your treatment!!

-Ski

Anonymous

November 6, 2000 at 5:35 pm

Post count: 93172

#1158152

Dear Ski,
Thanks for your understanding. I am very happy to hear about such a success you have had in the treatment of the Grave’s disease. It seems as though certain people, from what I see on the bulletin board, have good results in treatment and others have a really difficult time.
I lay somewhere in between.

Besides, I am afraid of the RAI due to the possible effects it might have on the eyes. I cherish my eyes and have nothing more to look forward to in treatment if the eyes get excited and bulge out.

Regardless, I apologize for not being able to return your response as soon as I would have liked, but I have been able to get here only once a week for now.

Again, I thank you.

I hope all the best and I guess I am now part of GDF, because I have a login name and password. I hope this is all I need so far.

Thanks again,
Pegah

Anonymous

November 6, 2000 at 6:22 pm

Post count: 93172

#1158153

Hi again Pegah,

Don’t worry about responding quickly, you don’t need anything more to worry about right now!

As for joining the NGDF, getting your login name and password just makes you a member of this BB. In order to become a member of the Foundation, you need to go to the NGDF home page at http://www.ngdf.org and pay for a membership. Not pushing you, just letting you know there is a further process. And with your paid membership they’ll send you 6 bulletins of your choice (and give you discounts on other bulletins as well as a discount for the conference).

Hang in there, you’re going to make it,
Ski

Anonymous

November 7, 2000 at 3:43 am

Post count: 93172

#1158154

Thanks,
I think I WILL join. After all, a life time disease calls for a life time membership with the people that can share with you and help you.
Thanks again, and don’t worry about pushing. I think this foundation is a fabulous idea.
sincerely,
Pegah

[Anonymous October 27, 2000 at 6:20 pm Post count: 93172]

#1158148

Does anyone know of the potential hazards, long or short term, that may occur due to Grave’s disease? I was diagnosed with Grave’s by a very impersonal doctor who scared me to death and since then I have thought that I have every cancer and disease in the book. I can’t help thinking this way because I was such a healthy girl before I started losing weight to find it was due to Grave’s.
Is there any high risk factors involved here?
What can I do to make my body react faster and get better soon? I remember seeing a lot of messages posted regarding diets to consider.

Does Hogkin’s lymphoma’s odds become greater with the diagnosis of Grave’s disease??? I am so scared and no one has yet put my mind at ease.

I need to stop thinking negatively, that’s for sure, but I’ve had such a bad experience that I have no idea where to go from here.

Thanks,
Pegah

[Anonymous October 27, 2000 at 6:34 pm Post count: 93172]

#1158149

Hi Pegah,

I’m sorry your doctors have been so unhelpful, you’re smart to be looking for more information than they’ve given you!

There are a few things to consider when you’ve been diagnosed with Graves’ disease. The first thing is that anyone with *any* autoimmune disease has a greater likelihood of contracting another. Doesn’t mean you will. You might. It’s just something to consider — I haven’t done a lot of research on all the autoimmune diseases, but if you were very interested you could do some websurfing. I believe there is a site for a national autoimmune association — it may even be a link on the NGDF website.

There are a couple of conditions that can occur along with Graves’ disease — Thyroid Eye Disease (the bulgy eyes) or Pretibial Myxedema (rash on your shins, looks like purple orange peel and itches, from what I’ve heard). Those are the only conditions that come with Graves’, and even they don’t come with it all the time. I think the figures are something like 15% with the eye disease, I’m not sure about the Myxedema but I do know it’s a small percentage.

There are certain effects that could be experienced due to being hyperthyroid for an extended period of time, if you went untreated, and those can include osteoporosis, heart disease, muscle damage.

If you read through this board, you’ll see a lot of guesswork as to what is and is not caused by Graves’. Some doctors disagree on these things, so we discuss them here. You can make up your own mind about the “patterns.”

One thing we all agree is that we get “brain fog” that doesn’t even seem to completely disappear when we have been successfully treated. Forgetting things, not connecting all the pieces of the puzzle at once, Jake and Jan call it the “train has left the station.” Good name for it.

I have never heard of Hodgkins being related to Graves’ disease.

On the NGDF home page there are recommended books that are VERY useful, especially if you’re inclined to wondering what is and is not related to Graves’ disease. They get a small cut if you purchase the books by clicking through their website, so if you’re interested in getting the books, make sure that’s how you do it.

Information is power! Keep reading, learn all you can. GOOD LUCK!

-Ski

[Anonymous November 1, 2000 at 6:33 pm Post count: 93172]

#1158150

Dear Ski,
Sorry for a lack of a more prompt response. Do you, too, have GD?
I was wondering about this brain freeze as you call it. I am a pre-med student and I have actually felt a lot better after being treated, because before being treated I felt like I had “brain freeze…”
Oh well, is it also normal to feel a tightness in the throat area when being treated with Tapazole…?
I have these wierd feelings that I am going to die, I guess it comes with being diagnosed with a “disease..”

Does GD decrease life expectancy or anything?

I am a college student who just got in a car crash, had my wallet stolen , all in a week and have no money.

Are any of the books free?

I think you’re right… I really do need to get more informed.
Thanks again,
Pegah

[Anonymous November 2, 2000 at 6:15 pm Post count: 93172]

#1158151

Hi Pegah,

Indeed I do have GD — my symptoms began almost exactly two years ago, I was diagnosed 3 months later (pretty speedy, really) and I had RAI in April of 1999. I’m currently on no meds at all. My T4 level is within normal range and my TSH is undetectable, so my doctor thinks I *might* have to do another RAI. Luckily for me he’s willing to wait and see a little while longer since my levels have been the same for months (not going up or down).

I noticed that, when I was hyper, I’d have a million thoughts running through my brain every second and I was unable to corral them or control them – here one second, gone the next, no memory of them having been there. Since I came away from hyper, I feel differently — as though I can’t quite “get” them sometimes. Just out of reach, on the “tip of my brain,” as it were. Sometimes I function just fine, and sometimes things slip through. I’ve resigned myself to the fact that unless it’s written down, I can’t count on remembering. (Then of course I must remember that I have something written down and where to look for it! Yikes.)

I can’t tell you about a tightness in your throat while on Tapazole — I was put on Tapazole for a short time (my doctor said it was to “kick” the TSH into production) and didn’t experience that. If I were you, I’d talk to your doctor about it.

Luckily, with proper treatment, Graves’ is not a fatal disease. I can imagine that some of your fears may be due to being diagnosed with a “disease,” and some of them may have to do with the name of it!!! Unfortunate for us that it was discovered by Dr. Graves…. Couldn’t it have been Dr. Shaky?

As far as I know, GD does not affect life expectancy at all.

The books are not free, but with membership to the NGDF, you can get 6 of their bulletins for free, and that’s a great deal! There are some terrific topics, lots of great information.

Getting more informed will make you feel at least more in control.

I’m so sorry to hear about all your recent stressors! This could certainly have an affect on how you’re feeling right now — extra stress exacerbates ANY disease, and (I think) especially GD. It’s so easy for us to get all worked up….

Wishing you LOTS of LUCK in your treatment!!

-Ski

[Anonymous November 6, 2000 at 5:35 pm Post count: 93172]

#1158152

Dear Ski,
Thanks for your understanding. I am very happy to hear about such a success you have had in the treatment of the Grave’s disease. It seems as though certain people, from what I see on the bulletin board, have good results in treatment and others have a really difficult time.
I lay somewhere in between.

Besides, I am afraid of the RAI due to the possible effects it might have on the eyes. I cherish my eyes and have nothing more to look forward to in treatment if the eyes get excited and bulge out.

Regardless, I apologize for not being able to return your response as soon as I would have liked, but I have been able to get here only once a week for now.

Again, I thank you.

I hope all the best and I guess I am now part of GDF, because I have a login name and password. I hope this is all I need so far.

Thanks again,
Pegah

[Anonymous November 6, 2000 at 6:22 pm Post count: 93172]

#1158153

Hi again Pegah,

Don’t worry about responding quickly, you don’t need anything more to worry about right now!

As for joining the NGDF, getting your login name and password just makes you a member of this BB. In order to become a member of the Foundation, you need to go to the NGDF home page at http://www.ngdf.org and pay for a membership. Not pushing you, just letting you know there is a further process. And with your paid membership they’ll send you 6 bulletins of your choice (and give you discounts on other bulletins as well as a discount for the conference).

Hang in there, you’re going to make it,
Ski

[Anonymous November 7, 2000 at 3:43 am Post count: 93172]

#1158154

Thanks,
I think I WILL join. After all, a life time disease calls for a life time membership with the people that can share with you and help you.
Thanks again, and don’t worry about pushing. I think this foundation is a fabulous idea.
sincerely,
Pegah

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