just waiting

[Guest guest]

I'm back, and my brother is mending well thanks to all your kind prayers. He

ended up having a quadruple bypass. He's always had exophthalmos but

supposedly no thyroid problems. Now his eyes are worse than ever and his

potassium was also really low so I suspect he's under a Gravesian influence.

Of interest, out of 5 siblings he is the only one who doesn't load up on

supplements, particularly COQ10 which he really needs. He's going to start

now.

I wanted to mention too with the fatigue that's been recently discussed, that

lot of the energy depletion in GD is caused by the nutrient deficiencies

caused by our hyper metabolism. In particular, free fatty acids are deficient

and also vitavimins C, E, B complex, and beta carotene. Thanks again to all

of you.

[Guest guest]

Roseann,

There is no quick fix for this disease, no matter what treatment you choose

it is going to take some time. What helped energize me, literally, was when

I started reading EVERYTHING I could on GD, the archives here was especially

helpful. It made me understand this disease, it let me know I wasn't alone

in all that we go through, it let me know I wasn't crazy...it gave me

ammunition to to question my drs...none of this happened for me until this

past January. Almost 4 years AFTER I had RAI and was feeling worse and more

depressed than I had been when I was extremely hyper.

Saying that, I have to add that I also became very very angry, probably my

worst Graves Rage to date because I had been rushed into RAI, which doing so

can never be undone. I was told it was my only choice, that or surgery.

The drs. (3 of them) told me it is much easier to *treat* hypothyroid than

hyper...they DID NOT tell me how bad I was going to feel going hypo and

being left there for a year, what my first endo told me (I'm on number 3 now

and feel like I have found a wonderful dr., one who does NOT do RAI accept

as a very very last resort, so even drs. are starting to see what RAI

causes)anyhow back to what my first endo told me and I quote " In 6 months

Jody, you will feel so good that you will realize how sick you were " .

Roseann, I am telling you oh so very honestly...SHE LIED. She was fired.

So have patience, read and learn, ask questions and if you need shoulders to

cry on, cry here. We have all experienced and some of us still do what you

are going through. Your not crazy and your not alone. Others can tell you

better than I about how quickly PTU or TAP will help you to feel better as I

was only on PTU for 3 weeks before RAI. You may want to have your husband

or significant other read some of the posts here or some of the articles

(get Dr. Arhems book if you can) so he too will understand that what you are

going through is very debilatating at times and very unpredictable. It made

all the difference in the world in my marriage when my husband started

educating himself on GD. He now understands the weight gain, the hair loss,

the days when I am so tired I can barely make it downstairs so the house

doesn't get picked up that day. He helps much more around the house and is

so much more understanding. This disease affects everyone around us and the

more they know, the more they can help, sometimes even if it is only a hug.

Hang in here Roseann.

Oh, one thing about RAI, people who have RAI are more prone to getting the

eye disease that many of us have. Just something else to consider before

making a choice.

*HUGZ* for you, the tiredness will lessen.

Jody

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[Guest guest]

Roseann,

I forgot to ask you, what do you mean the beta blockers make you " vibrate " ?

Jody

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[Guest guest]

Welcome back Elaine,

I am so glad your brother is on the mend, will keep sending him prayers

until he is healed.

What is COQ10? I am just starting the supplements, calcium makes me sick to

my stomach Others have told me that is normal <sigh>

I have a question for you and Bonnie, would it be alright if I copied and

pasted a post from each of you here from the other board? They are the two

that helped me so much when I was first learning about this disease. I read

them, printed them and made my family read them also, it was the beginning

of their education on this disease and they explain things so well to

husbands and to friends and family on exactly how this disease is/can be. I

don't want to do it without permission from both of you, but I think reading

both may really help Roseann, for herself and her family.

Again, welcome back, you were missed.

Jody

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[Guest guest]

Hi Jody,

Please feel free to copy and paste whatever you want.

I think you'll find that if you take your supplements right after eating you

won't feel sick. And be sure to follow them with plenty of water.

Coenzyme Q 10 is a supplement that acts like a covitamin, making your other

vitamins work better and it's a powerful antioxidant. In people with milder

heart disease, it can accomplish as much as a bypass or so it's been said. It

also helps dental health as it keeps your veins and arteries clear, and that

keeps the blood in your oral cavity properly circulating. They're even

starting to add COQ10 and vitamin K to oral hygiene products. Thanks again

for all your support. Elaine

[Guest guest]

My endocrinologist told me that the fatigue is from the fact that our

bodies are so speeded up, it's like we are running a marathon. The

exhaustion you feel is real, so besides resting more (we all have to learn

to do that), you will start feeling less tired when your thyroid hormones

are under control. That is probably one reason why so many of us did so

much sugar and caffeine - trying to boost the energy level - it's actually

not smart since it's false stimulation and lots of calories!

As for ATD vs. RAI, the really serious question is not which works better,

but which does more harm. Usually, you have to be on the ATDs to get your

levels down before any RAI treatment, so you have some time to do your

research. Read this group's archives on RAI, they are very informative.

Anyway, most people start feeling some relief from ATDs within weeks, so

hopefully that will be your case also.

It must be hard to be so tired and have to take care of kids. I hope you

can recognize that the fix for this exhaustion is not simply boosting your

energy. Can you ask for help with the kids for the next few weeks? Give

yourself a nap every day? This is the time you have to really take care of

yourself. Hang in there!

At 01:48 PM 09/12/2000 -0700, you wrote:

>Well I have to wait one more week before they can do anything to help me.

I am so tired right now, Wish the doctor would of gave me something to

boost my energy. He did have me on a beta blocker, but that made me

vibrate, not good. Well I want to know if the anti thyroid pills helps out

more then the RAI, or the surgery. help me boost my energy, I have two kids

and it is taking a toll on me. Thanks.

>

>nne Landry

>

>

[Guest guest]

>>>As for ATD vs. RAI, the really serious question is not which works

better, but which does more harm. Usually, you have to be on the ATDs to

get your levels down before any RAI treatment, so you have some time to do

your research. Read this group's archives on RAI, they are very

informative. Anyway, most people start feeling some relief from ATDs within

weeks, so

hopefully that will be your case also.

It depends on how severe your case is, too. Mine was in the early stages

(high heartrate, shaking, trouble swallowing from the enlarge goiter, felt

sick all the time...), and the beta blocker made me feel better within days.

The ATD, within 2 weeks. It just takes time and a bit of patience, and the

ability to take it *easy* for a bit until it all kicks in. Dont' let your

rush to feel better provoke you to making an irreversible decision. And

stay away from the caffeine! That's my personal advice.

Kari

[Guest guest]

Roseanne, I hate to be the bearer of bad news but sometimes it takes a

long time to get back to normal energy. You might try doing some

mediation to relax you or taking lovely baths. There is no overnight fix

for Graves. It has to run its course. It is not like an infection that

clearns up after a course of antibiotics. I was very impatient at one

point and I wanted to have the rest of my thyroid removed but

convinced me to give the drugs longer and I am just now starting to feel

better. If I had had the surgery I don't know if I ever would have felt

better.

[Guest guest]

> Welcome back Elaine,

> I am so glad your brother is on the mend, will keep sending him prayers

> until he is healed.

>

> What is COQ10? I am just starting the supplements, calcium makes me sick to

> my stomach Others have told me that is normal <sigh>

>

> I have a question for you and Bonnie, would it be alright if I copied and

> pasted a post from each of you here from the other board? They are the two

> that helped me so much when I was first learning about this disease. I read

> them, printed them and made my family read them also, it was the beginning

> of their education on this disease and they explain things so well to

> husbands and to friends and family on exactly how this disease is/can be. I

> don't want to do it without permission from both of you, but I think reading

> both may really help Roseann, for herself and her family.

>

> Again, welcome back, you were missed.

> Jody

You can copy what you like, no problem here :-)

Jean

[Guest guest]

Hi (and others)was hoping you just were on a quick break, or

holiday off, however was hoping too, if you were going to be able to

give me your opinion about the trail (pros and cons of dif/drugs -

times used- etc)or not?? (last post)Glad to hear things are going

well.

To Donna, I did call the (and spoke to nurse) about Bob's last

ct scan (of the head) and she gave me the results (doesn't seem

anything out of ordnary).

This site I found, http://www.emedicine.com/med/topic413.htm

pretty much answers a lot of questions.

And the statment " about trying to avoid stage 4 survivors. " I truely

think, if I were stage 3 or 2, I still would want a (mis dx) of stage

4, as the more agressive treatment would do best. I have read much of

lower stages now being stage 4 after only so so treatment. Besides,

the idea is to all (share & ) learn from each other. Like has

done so well on this site. (And still can turn me in to a full time

groupie if only give me the insights on this important q sweetie ;-)

Always the Best, Betty B.

ps. I had always thought and always said my whole life, if I were

going to die at a certain date, I would not want to know of the date.

I am now changing my mind - if I only had 5-8-10 yrs I would want to

know it. Even 2 - it is better than not acting like death is a

possiblity - and acting upon it for better days at present. The

problem is of course, how to you stop thinking of this daily evil

possibility?? One thing I find, not living as stressed life, little

things no longer clutter up my mind. Also, reading the Bible all the

way thru - I had started it 2 yrs ago, and only got to the Psalms.

Now however, it is a priority - to finish it. It is rewarding and

takes the mind off - and will make me feel better to know that

whenever I do go to meet my Master, I will have at least finished his

book. Sorry if this is out of place here to some on this list. I do

try to be considerate of others (beliefs or not) and wish to only

share what is helping.