re: newly diagnosed

[Guest guest]

Hi Jani,

Welcome to the group, I'm glad you found us! I can't comment on your Tap as

I was on PTU for just a few weeks with Inderal to bring heart rate down

before having RAI (which was *my* first mistake).

Did the endo or internist do antibody testing to make sure it is Graves? I

regret that I never had that done before being rushed into making a

permanent decision. That is the only way to know 100% it is GD. What state

are you in? Can you ask your dr. or endo to put you on temporary disability

while your working through this part of the disease. Graves is now on the

Americans With Disabilities list so it is possible!

I hate to tell you but there is no quick fix, and can only suggest that you

keep reading as much as you can (comprehending will get much easier as you

leave the hyper state). Read about all of the choices for treatment that

are out there before making a decision that could be permanent. The Tap

will give you the time to do that so you don't have to rush or be rushed.

RAI and surgery are both permanent. You can type both into our search

engine at the top of the message page. Also Caroline had a partial

thyroidectomy last October, was pregnant a month later (not from the

surgery, honest:) and just had a beautiful and healthy baby boy last month.

She is doing good as her post will attest to. You can find all of her posts

by searching under . Jeannette, Debbie R. (I think)

have attained remission from the ATD's, Terry ding has been on long term

ATD's along with Chinese Herbs and Acupuncture (helps that her husband is

trained in both) and I know they will all respond to you as they read your

post.

Somewhere around post number 3700 there is a post that Terry put together

that we all contributed to that lists many many more symptoms that are a

part of this disease in the different stages that may help you to understand

things your dr. will not attribute to GD but way to many of us have

experienced them to not be a part of this disease. No one experiences all of

them and the disease has its own uniqueness to each of us but we do

understand what you are going through.

Keep reading, throw out questions, rant, cry or whatever you need to do, you

can do it in this group when you think no one at home will understand.

Take care and again, welcome!

Jody

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[Guest guest]

Hi Jani:

Welcome to the group. I remember that when I was diagnosed, it was very

hard to come to terms with the fact that I had a disease I would have to

contend with long term. Please let me assure you that I started to feel

relief within the first 4 weeks of being on ATD's (I am on PTU). Someone

else in the group can speak more about possible side effects of Tapazole, I

can tell you that the aches and exhaustion are very typical of

hyperthyroid. My endo explained it to me by saying that it is as if your

body is running a marathon all day and night, so your muscles never rest,

and are sore. Some people think that being hyperthyroid means you have

lots of energy, but I have found that in fact I was completely exhausted -

hyper, but exhausted. Also, I wonder if the beta blocker you are on is

causing some of these effects? I stopped using beta blockers rather early

into my treatment, or only used them when my pulse jumpted really high.

Is it possible for you to take a week or two off work? I remember that it

was almost impossible for me to get anything done without constantly

napping. Once the meds kick in, you will feel more level.

The best advice I can give you is to stay with this group - invariably

someone has gone through what you are going through; read as much as you

can; and really listen to your body - rest when you need it and be kind to

yourself. You won't be able to get done what you used to get done for a

while. You are going through the toughest phase right now. Don't take

what the doctors tell you for granted, double check all your lab results

(there are very specific posts in this group about levels). You will soon

get to a point where this becomes manageable.

Also, many of us have commented that Graves' really brought into focus many

areas of our lives that needed review. I have come to terms with this

disease as being my teacher, and as hard as it's been, in many ways, I have

become a stronger person for it.

Good luck to you.

At 08:42 PM 09/04/2001 +0000, you wrote:

>I just subscribed to this forum after having spent the weekend

>digesting a lot of internet mumbo jumbo on Graves. I was just

>diagnosed Friday by the endocrinologist I was referred to by my

>internist. A year ago I had a physical and had a tsh done because my

>cholesteral was high and all efforts to lower it made no difference.

>The tsh said I was hypothyroid so I was put on synthroid and the dose

>was gradually reduced after I tested hyper after four months. I have

>been off synthroid since April of this year, but my thyroid was still

>in hyperdrive. In early August I had tsh, t3 and t4, still hyper -

>had a thyroid scan, and then finally got in to see the endo. on Aug.

>31. He diagnosed Graves disease. Because my resting pulse was 100+,

>he put me on inderal and also on tapazole for the thyroid. I'm in the

>third day of meds and feel awful - dizzy, nauseous, exhausted, itchy

>eyes, and achy joints. I felt better on Friday! I've been assured

>this is not unusual by the pharmacist and physician, but to keep the

>doctor posted. Getting up and going to work in the medical clinic

>where I am the infection control coordinator and oral surgery

>assistant/office manager is daunting, to say the least right now. I

>don't even have the energy to fix dinner and just want to go to bed.

>

>I've read a few dozen previous posts and hope that I can get some

>support/advice/understanding here. I'm not excited about having

>a 'disease' and would really like to get on with my life.

>

>Jani

>Rhode Island

>

>

>

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

>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.

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

>

>

[Guest guest]

<<Did the endo or internist do antibody testing to make sure it is

Graves? I

regret that I never had that done before being rushed into making a

permanent decision. That is the only way to know 100% it is GD.

What state

are you in? Can you ask your dr. or endo to put you on temporary

disability

while your working through this part of the disease. Graves is now

on the

Americans With Disabilities list so it is possible!>>

Thank you, Jody, I appreciate the welcome. What state do I live in?

Confusion right now, but normally Rhode Island. The only tests I've

had are t3, t4, and tsh and a cbc (in fact, I have to go back

tomorrow as they couldn't draw my blood Friday - I was such a wreck

and very dehydrated). I had all of my bloodwork and then he got the

scan results and came in and told me it was Graves. He had said

before that that it was autimmune or goiter. He seemed very sure.

Right now I feel out of control. I'm exhausted, weepy, confused, and

just want to crawl in a hole. Until recently I've never been sick or

hospitalized and I'm 52 years old! I live alone with two elderly dogs

and work 8 hour days, 5 days a week in a sometimes stressful medical

environment. I did get my head together enough this weekend to phone

my sister and tell her to get some bloodwork and to tell her doctor

about me. We have no other relatives (close ones anyway) and our

mother was adopted and died at 38, so our medical history is mostly a

black hole. I honestly did not think I was feeling that badly until I

went to work today after two days on the tapazole and inderal and I

could hardly concentrate. I have a lot of questions and will keep

reading the previous posts. Again, thanks for the welcome, and I'll

be paying attention.

Jani

[Guest guest]

Dear Jani,

You wrote about your sketchy medical history. I just want to assure you

that while it's definitely useful it's not necessary to know in order to

get a clear picture of where you are - as far as I've been able to

determine there are no thyroid disorders in my family and only lately has

my father developed some autoimmune conditions, likely work related

(arthritis, gout, asthma).

About being achy: Have you had a bone density test? While I was able to

function well on a few hours of sleep and was very jittery I also had

some real knee weakness due to the bone loss being hyper can cause. I

went back to normal soon after starting ATD's and 1200 mg. calcium (with

at least half as much magnesium, no Tums please) a day.

I hope you're able to continue with ATD's. Members of this list have also

found relief switching from Tap to PTU or vice versa. I started off at 30

mg./day, no beta blockers and felt better (i.e. saner and stronger) soon.

I'd also eliminated all caffeine, ate more whole foods and took a

homeopathic remedy for a few months. After 14 months I've been off Tap

for a few weeks and am feeling okay.

Good luck,

Fay

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[Guest guest]

Hi Jani,

Click on the following link, there are 2 articles right at the top, one on

the TSI antibody testing and the other on the role of beta blockers in

Graves.

www.suite101.com/query.cfm?qt=Graves+Disease & col=t+a & qc=t+a+l+d+h

>>>>I'm exhausted, weepy, confused, and just want to crawl in a hole.<<<<<

>>>>Jani, we all know these days! Not something that one is likely to

>>>>forget very quickly...You probably are having muscle aches, maybe some

>>>>tremors, heart palps, hair loss, nails not growing right...and the list

>>>>goes on and on...but you will start feeling better. And you are not

>>>>alone in this anymore. This list is also for friends and family members

>>>>to learn about Graves also so that they can understand what you are

>>>>going through. Sometimes this disease isn't easy, but we can and do

>>>>feel better.

There is much to be said for there being power in knowledge, the more you

learn about this, the more in control you will be! Your in a good group of

people who truly care about each other.

Take care,

Jody

_________________________________________________________________

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[Guest guest]

<<And, as Jody said, take your time and avoid any permanent decisions

(like

radiation). It is possible to lead a functional, normal life when

adjusted

on ATD's. >>

From what I remember of my appt. Friday, Dr. Y. is all for using the

tapazole first to see if we can control this. Also, because of my

high resting pulse, he didn't think the R/A was appropriate. I also

told him that I'm not excited about such a drastic decision. Which

I'm not. Right now everything is new and raw and rather overwhelming,

but I'm trying to coordinate my thought process and absorb some of

the information on this list. I'm slowly working through archives.

Again, thanks for all the kind welcomes and personal experiences -

that helps me a lot right now.

Jani

[Guest guest]

I've posted before on this, my herbalist husband says ginseng is " overused "

and misused and is not indicated for people with GD.Ditto echinacia, an

immune system stimulant.

Terry

>

> Reply-To: graves_support

> Date: Wed, 05 Sep 2001 11:02:13 -0700

> To: graves_support

> Subject: RE: Re: newly diagnosed

>

> I think Terry's the resident herbal info person, but I wanted to note that

> Ginseng is a very " yang " herb, and has heating properties, and I would

> really think twice before using it in a hyper-thyroid state.

>

>

>

> At 01:26 PM 09/05/2001 -0400, you wrote:

>>

>>

>> -- Original Message --

>> : I have read that Ginseng is good for anti-stress. Do you know if

>> it would help with Graves?

>>

>

>

>

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

> 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.

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

>

>

[Guest guest]

Welcome to the group Jani.

I don't think I can add much to what others already said except tell you about

my first few weeks after diagnosis. I

first went to the Dr because I thought I was have heart problems or asthma or

something like that. I did notice that

I had swelling in the base of my neck and I had trouble swallowing sometimes.

Blood test showed I had

hyperthyroidism. I was referred to an endo.

I felt terrible and went back to the GP for some treatment, (my appt. with the

endo wasn't for another week and the

GP hadn't started me any treatment). I was started on a small dose of PTU (the

GP was reluctant to start anything

until the endo saw me). I was feeling worse and worse. I also now had a marked

tremour. I had planned to stay at

work but I found myself getting upset at the drop of a hat and as a Nursing Unit

Manager I thought it was not good

to be wanting to cry most of time and so I did what was best for and took most

of the next week off work.

I then saw the endo, more blood tests and was started on a beta blocker and PTU

increased. I took more time off work

and started to feel better after a few days, although not close to 100%. GD was

then diagnosed and a few months

later I had sub total thyroidectomy. I had this done for many reasons - mostly I

wanted to fall pregnant as soon as

possible, due to my age. For me, this decision has so far proven to be the right

one. By the way I also went to a

naturopath who put me on a course of homeopathic remedies to help restore my

immune system. I changed many aspects

of my lifestyle and the way I deal with stress.

I think it takes some time for our bodies to adjust and the symptoms to become

tolerable. Prior to the surgery I

felt better but after the surgery and now I feel fantastic. I feel better than I

have in years. Maybe it has

something to do with the 5 week old angel I now have!

I think all of this has contributed to the way I feel today. Jani, give yourself

time, get support, information and

make the decisions that are right for you.

Cheers

Caroline

Jani wrote:

> I just subscribed to this forum after having spent the weekend

> digesting a lot of internet mumbo jumbo on Graves. I was just

> diagnosed Friday by the endocrinologist I was referred to by my

> internist. A year ago I had a physical and had a tsh done because my

> cholesteral was high and all efforts to lower it made no difference.

> The tsh said I was hypothyroid so I was put on synthroid and the dose

> was gradually reduced after I tested hyper after four months. I have

> been off synthroid since April of this year, but my thyroid was still

> in hyperdrive. In early August I had tsh, t3 and t4, still hyper -

> had a thyroid scan, and then finally got in to see the endo. on Aug.

> 31. He diagnosed Graves disease. Because my resting pulse was 100+,

> he put me on inderal and also on tapazole for the thyroid. I'm in the

> third day of meds and feel awful - dizzy, nauseous, exhausted, itchy

> eyes, and achy joints. I felt better on Friday! I've been assured

> this is not unusual by the pharmacist and physician, but to keep the

> doctor posted. Getting up and going to work in the medical clinic

> where I am the infection control coordinator and oral surgery

> assistant/office manager is daunting, to say the least right now. I

> don't even have the energy to fix dinner and just want to go to bed.

>

> I've read a few dozen previous posts and hope that I can get some

> support/advice/understanding here. I'm not excited about having

> a 'disease' and would really like to get on with my life.

>

> Jani

> Rhode Island

>

>

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

> 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.

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

>

>