In Need of Support!. New to Group.

[Guest guest]

Hi ,

I am very tired tonight, but I just wanted to let you know that I read your

message. I hope you feel better soon, and with proper treatment (or at

least adequate treatment), you should notice a big difference. It sounds

like the doc just put you on a beta blocker. That is not sufficient. If you

are going to take medication, you are not taking the meds that will help

your thyroid levels to come down. First, you should have baseline labs

done, which include thyroid levels (Free T3 and Free T4), CBC/WBC, and

liver function tests. Then you should be taking antithyroid medication

(ATD) like PTU or Tapazole. If you have asthma, you should be taking a

calcium channel blocker instead of a beta blocker, and when your thyroid

levels come into range, you can taper off the calcium channel blocker.

I am sorry I don't have the energy to go into more detail, but I just

wanted to say a few words and let you know that I hear you. The symptoms

you describe are found with Graves', and you should have some antibody

testing to confirm the diagnosis (please ask for TSI and TPO-antibody

tests), as well as an ultrasound (to see if you have nodules). You do NOT

need a RAIU scan (where you drink a small amount of radioactive material)

-- that test is usually used to determine what dose of RAI to give you, and

if you are not going to do RAI, you don't need it. Please don't do a

permanent treatment like RAI or surgery until you have read A LOT of info

and have come to the decision that the medication isn't right for you (it

does help most people, if given a chance, and you can stay on it

indefinitely if you don't have any problems with it); only with the

medication can you reach remission, as the other options typically result

in hypothyroidism and thyroid hormone medication for life.

At 10:00 PM 10/6/2003, you wrote:

>Hello everyone

>

>I was diagnosed with Graves about 4 months ago. My symptoms have been

>persistent since March. I have had so many symptoms that have been

>making me and everyone else around me crazy.

>I feel like a monster sometimes and out of control. Before I as

>diagnosed with Graves the doctors told me I probably had anxiety and

>were dismissing all my symptoms. I finally found a doctor who told me

>I wasn't crazy and that this is all part of the disease.

[Guest guest]

,

Are you telling us that you have had RAI?

Elaine

Always acknowledge a fault. This will throw those in

authority off their guard and give you an opportunity to

commit more. --Mark Twain

Hello maria_martino18

On Monday, October 6, 2003, you wrote

> Hello everyone

> I was diagnosed with Graves about 4 months ago. My symptoms have been

> persistent since March. I have had so many symptoms that have been

> making me and everyone else around me crazy.

> I feel like a monster sometimes and out of control. Before I as

> diagnosed with Graves the doctors told me I probably had anxiety and

> were dismissing all my symptoms. I finally found a doctor who told me

> I wasn't crazy and that this is all part of the disease.

> I was wondering if any of you have symtoms such as chest tightness

> and dicomfort as well rashes and hives. Are these normal of graves. I

> feel like I am having a heart attack on a daily basis. I feel like

> breathing has been an issue. I also have asthma as well so Graves

> can just be making my asthma worse. The docs put me on a beta blocker

> which I understand can irritate the lungs if you are asthmatic. The

> thing is I need the beta blockers because my heart rate as been so

> high. It has been a bit lower ever since I got the radioactive iodine

> treatment done. I can't gain weight no matter what I eat. (I do

> realize this should be a good thing, but I would rather weigh 10

> pounds more and feel normal.

> Will I ever feel normal again? I still don't. I feel paranoid and

> anxious still. I feel like I have impending doom-like fear of dying.

> I wish these feelings would stop.

> Has any of you felt this way?

> I am happy to know there is a group support like this. I feel like I

> have been going through this myself. Everyone around me has

> definetely been affected. They keep telling me to calm down and not

> to worry. (Very hard to do this when you Graves!). My attention span

> has definetely been affected. Its a miracle I have been able to still

> perform in my job. I swear-they should have patient with Graves

> disease go on diability. I feel like this dieases has diasbled me in

> so many ways. I have not been able to travel anywhere or go on long

> road trips because of sitting still in a car or plane. Afraid that

> soemthing will happent o

> me and I won't be near a hospital. (I know this sounds paranoid but I

> know its probably all related to the disease). I am finally going on

> my first roadtrip this weekend in a year! I am scared because I will

> out of my normal surroundings. I am 28 years old and this disease has

> made me feel like I am 90!

> I am guess of I am just looking for some words of wisdom and advice

> for those of you out there who have Graves diasese.

> Thanks!

> -

> -------------------------------------

> The Graves' list is intended for informational purposes only and is not

intended to replace expert medical care.

> Please consult your doctor before changing or trying new treatments.

> ----------------------------------------

> DISCLAIMER

> Advertisments placed on this yahoo groups list do not have the endorsement of

> the listowner. I have no input as to what ads are attached to emails.

>

--------------------------------------------------------------------------------\

------

>

[Guest guest]

Yes, I did have Radioactive iodine at the end of August. The doctor

was trying to assure me that I would exprience no symptoms. I already

tried taking methamizole but I had an allergic reaction to that

medication. So RAI seemed like the only option for me. I hope I made

the right decision. Have you had RAI? Has anyone out there had it and

have you felt any side effects from it?

> ,

>

> Are you telling us that you have had RAI?

>

> Elaine

>

> Always acknowledge a fault. This will throw those in

> authority off their guard and give you an opportunity to

> commit more. --Mark Twain

>

> Hello maria_martino18

>

> On Monday, October 6, 2003, you wrote

>

> > Hello everyone

>

> > I was diagnosed with Graves about 4 months ago. My symptoms have

been

> > persistent since March. I have had so many symptoms that have

been

> > making me and everyone else around me crazy.

> > I feel like a monster sometimes and out of control. Before I as

> > diagnosed with Graves the doctors told me I probably had anxiety

and

> > were dismissing all my symptoms. I finally found a doctor who

told me

> > I wasn't crazy and that this is all part of the disease.

>

> > I was wondering if any of you have symtoms such as chest

tightness

> > and dicomfort as well rashes and hives. Are these normal of

graves. I

> > feel like I am having a heart attack on a daily basis. I feel

like

> > breathing has been an issue. I also have asthma as well so Graves

> > can just be making my asthma worse. The docs put me on a beta

blocker

> > which I understand can irritate the lungs if you are asthmatic.

The

> > thing is I need the beta blockers because my heart rate as been

so

> > high. It has been a bit lower ever since I got the radioactive

iodine

> > treatment done. I can't gain weight no matter what I eat. (I do

> > realize this should be a good thing, but I would rather weigh 10

> > pounds more and feel normal.

>

> > Will I ever feel normal again? I still don't. I feel paranoid and

> > anxious still. I feel like I have impending doom-like fear of

dying.

> > I wish these feelings would stop.

> > Has any of you felt this way?

> > I am happy to know there is a group support like this. I feel

like I

> > have been going through this myself. Everyone around me has

> > definetely been affected. They keep telling me to calm down and

not

> > to worry. (Very hard to do this when you Graves!). My attention

span

> > has definetely been affected. Its a miracle I have been able to

still

> > perform in my job. I swear-they should have patient with Graves

> > disease go on diability. I feel like this dieases has diasbled

me in

> > so many ways. I have not been able to travel anywhere or go on

long

> > road trips because of sitting still in a car or plane. Afraid

that

> > soemthing will happent o

> > me and I won't be near a hospital. (I know this sounds paranoid

but I

> > know its probably all related to the disease). I am finally going

on

> > my first roadtrip this weekend in a year! I am scared because I

will

> > out of my normal surroundings. I am 28 years old and this disease

has

> > made me feel like I am 90!

>

> > I am guess of I am just looking for some words of wisdom and

advice

> > for those of you out there who have Graves diasese.

>

> > Thanks!

>

> > -

>

>

>

>

>

>

>

>

> > -------------------------------------

> > The Graves' list is intended for informational purposes only and

is not intended to replace expert medical care.

> > Please consult your doctor before changing or trying new

treatments.

> > ----------------------------------------

> > DISCLAIMER

>

> > Advertisments placed on this yahoo groups list do not have the

endorsement of

> > the listowner. I have no input as to what ads are attached to

emails.

> > ------------------------------------------------------------------

--------------------

>

> >

[Guest guest]

,

When have you had your blood work done last? What were the results?

At 10:51 PM 10/6/2003, you wrote:

>Yes, I did have Radioactive iodine at the end of August. The doctor

>was trying to assure me that I would exprience no symptoms.

[Guest guest]

,

I didn't find this group until a couple of days after I had RAI. There

are a few of us here, but the group overall is pretty anti-RAI. When I

heard some of the stories I totally paniced. A good friend kept

repeating " having made an irrevocable decision, never look back. " She

was right. It is the most common treatment in the US for Graves'

Disease, so one way or another, you and I and have lots of company...

I'm not sure what your doctor meant by no symptoms. Side effects aren't

common, usually being limited to a sore throat for a few days after RAI,

if that. But the point of it it to destroy the thyroid, and the vast

majority of the time, it does just that. Have you gotten any blood work

done yet? My doc didn't until it was pretty late-- I don't remember,

but I think it may have been almost three months. By then my TSH was

near 30. It is NOT helpful to put your body through all that! Get

regular blood work (TSH, FT4,T3) and start taking replacement as soon as

you start getting low. It takes a while-- couple of weeks to a month--

for it to really kick in, so try to be proactive, if you can. The

anxiety, feelings of doom, and all that can happen with both hyper and

hypo, so don't assume that those feelings mean you are still hyper. You

may be, or you may not. They do fade away once you get closer to

normal, though.

Hang in there!

-- in Fla.

maria_martino18 wrote:

> Yes, I did have Radioactive iodine at the end of August. The doctor

> was trying to assure me that I would exprience no symptoms. I already

> tried taking methamizole but I had an allergic reaction to that

> medication. So RAI seemed like the only option for me. I hope I made

> the right decision. Have you had RAI? Has anyone out there had it and

> have you felt any side effects from it?

>

[Guest guest]

> I didn't find this group until a couple of days after I had RAI.

> There

> are a few of us here, but the group overall is pretty anti-RAI.

> When I

> heard some of the stories I totally paniced. A good friend kept

> repeating " having made an irrevocable decision, never look back. "

> She

> was right. It is the most common treatment in the US for Graves'

> Disease, so one way or another, you and I and have lots of

> company...

>

Since you had RAI I'm not one of the best people to give you info but I

can offer support! Hang around here and you may end up kicking yourself

because yes, we're anti RAI. BUT, any anger or frustration you feel is

NEVER aimed at the people who had it but the doctors who rush patients

into RAI without giving them time to get informed about GD and/or the

drs. who consequently don't offer their patients the care they need after

RAI.

So don't second-guess yourself. It's possible from the way you describe

it that you truly would not have been able to tolerate ATDs. With the

proper care you WILL feel better. What you may want to do is repost with

something like Had RAI- Now What in the subject line so that anyone out

there who has had it can offer you the info you need.

On the homepage you should find a list of hyper - hypo symptoms that

you'll want to familiarize yourself with. What you need to do is learn

what you can about thyroid hormone replacement because keeping your level

stable is the key to your future good health. It's also key to reducing

your chance of developing thyroid eye disease (TED), which unfortunately

you're at greater risk of developing now that you've had RAI. Also, to

reduce the possibility of RAI, you should take the supplement Omega 3,

which is good for your overall health but has been shown to help the

eyes.

So you see, there is good reason to hang around here - you'll get a great

deal of direction and support. You may also want to see if there are any

thyroid support groups in your county/state. The one here in MI is an

excellent source of support and info, though the overwhelming number of

members are hypo, which is likely everywhere - and good for you -since

hypothyroidism - which is what you'll be dealing with - is much more

common than hyper.

take care, Fay

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[Guest guest]

Hi Callie's Mom,

Often it's harder to lose weight if we're hypothyroid, so it's possible your

daughter needs more replacement hormone. If you post her most recent blood

tests, with the normal ranges, someone here can comment.

Please warn you daughter to be careful with supplements as some stimulants are

bad for our condition. I'm less sure how they affect us after RAI but it might

make more sense to make sure her thyroid levels are high enough first.

And encourage her to come on-line, if she'd like. The Graves' board at

Mediboard.com also has some helpful discussions.

Best wishes,

Re: In Need of Support!. New to Group.

New to group also. My daughter, Callie, had RAI about a year ago.

You two and her are is the same boat. She is a freshman at LSU and

her biggest problem is wieght and more exactly the stigma that goes

with it. She works out 6 times a week and just can't get it off. We

are gonna try some supplements to see if they work to speed up her

metabolism and help her immune system overall.

Do you have the same problem? What do you do to combat it? Any

suggestions and comments appreciated.