Re: New Member/Confused and Scared

[Guest guest]

Marie, good luck. Maybe we should get our husbands together. Since we

don't have internet access my husband, who did a lot of my research for

me, read the info first and is really against RAI and relieved I didn't

do it.

I don't know how old you are and how much of an issue time is if you're

trying to (I love this Australian turn of phrase) fall pregnant. If

you're feeling elderly I'm sure Caroline (check the archives under

) among others will give you some good info. The main

thing is that you stay on ATD's for a while - you'll feel better and

better able to process all the info and make a good decision. Also, many

endos will rush a patient into RAI which is criminal because (among other

reasons) if a person isn't stabilized with at least a few weeks of ATD's

there's an extra risk of thyroid storm. The thing is, that after those

few weeks of pre-RAI stabilizing the patient usually has enough info to

refuse RAI and stay on ATD's.

This is the tip of the iceberg. Good luck. You've come to the right

place.

Take care, Fay

________________________________________________________________

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Join Juno today! For your FREE software, visit:

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[Guest guest]

Hi Marie:

Glad you found this group. Your instincts are correct, it's better to stop

and review all the options before rushing into RAI. I believe that we were

almost all told to do RAI, in my case, an endo said, well, you can stay on

the meds for a year, but then you will have to do RAI anyway. I found

another endo. I was on PTU (one of the thyroid meds) for almost 2 years

steadily, and now am basically euthyroid (normal thyroid levels). I am

extermely glad that I didn't do RAI - I made the decision out of instinct,

and was very happy to find this group and have it confirmed.

Can you post your lab numbers here so that we can see how high your levels

are, since your doctor says it's so extreme? The most relevant levels

would be your FT4, FT3 or T4, T3, and TSH. You can also check your numbers

for yourself, as all lab results come with a " normal range " to compare

against. What other symptoms besides swelling do you have?

On behalf of this group, I'd like to invite your husband to peruse some of

our posts for himself. I think he will find, as we all found, a group of

thoughtful and kind women, many professionally educated in the medical

field, others self-educated in order to deal with this disease. We do not

advocate anything except what has been learned through personal or

professional experience, and we are all here to help each other, and get

support for ourselves.

The first part of Graves' before your levels settle down is the most

difficult part, and it's really important that you respect how you feel

and your instincts. Most likely you will not be able to do all the things

you used to do, many of us experienced rather fundamental changes - I

believe that you will make it through more easily if you make sure that you

are kind and gentle with yourself, and do not get rushed into anything.

Hang in there, wait for others in this group to write back, check all your

options. Good luck!

At 09:41 AM 10/01/2001 -0500, you wrote:

>Hi everyone :-)

>Well, I've read a couple of the digests now and I'm really relieved to

>find a place where there are people who might understand what I'm going

>through.

[Guest guest]

Hi Marie -

Welcome to the group! I was just diagnosed in July, so I know exactly what

you're feeling right now! It's scary to here you have a disease that you've

never heard of before and that it's not really curable, merely controllable.

First of all, how did your GP diagnose? What tests did he/she run? Has the

Dr. done Free T3 and Free T4? How about blood tests for antibodies

associated with Graves'? These tests are more conclusive because there are

other thyroid disorders that can mimic hyperthyroidism, yet are temporary

disturbances to the thyroid. Hopefully, since you're seeing an endo, they'll

at least do those tests.

Whatever you do, don't rush into anything, especially RAI. I almost did

because that the time I was diagnosed, I was tired of feeling sick and just

wanted to be over and done with this disease and get on with my life. RAI

seemed like a " quick fix " . Many people on this board will tell you it's

anything but and that they wish they hadn't had the RAI. Read all you can

find on GD. There are several good thyroid books (The Thyroid Solution by

Ridha Arem and The Thyroid Sourcebook by Rosenthal) that also discuss

GD, Elaine (on this board) has written a very comprehensive book,

Graves' Disease A Practical Guide, that you can get through amazon or B & N.

You can find reliable info on the 'net. I have found New England Journal of

Med. articles online which discuss some of the studies on RAI,

www.thyroidmanager.org is a good site (very technical, but has an excellent

section on describing all the treatment options in detail). Don't let your

Dr. push you into anything, tell him or her that you really want to think it

over before making a " permanent " decision. In the meantime, you can try

anti-thyroid medications while you research your options. Do you know how

severe your GD is? I know that mine was caught very early and is very mild

at this point, so I have opted to try some alternative methods and monitor

my thyroid levels. I know there are other people here ( B. for one!) who

have had success with alternative methods.

As for your husband, I think it is difficult for men to deal with when a

spouse is ill. My husband tells me that men are compelled to solve problems

and it really drives them crazy when they can't solve or " fix " it. So your

husband probably likes the RAI idea because it " solves " the problem in his

mind. Just take synthetic hormone after and you're back to your old self.

Unfortunately, it's not that simple. The thyroid isn't the cause, just the

immediate problem. It's the underlying autoimmune disease that's the real

problem. I wouldn't be too hard on him, he just wants to see you better as

quickly as possible and the doctors give the impression that RAI is the best

way to do this. And maybe it will be the best option for you, but just make

sure do your homework and think about it first.

Oops, didn't mean for this to be so long...I've crammed so much into my own

brain lately that sometimes it just all spills out! And we all really

understand what you're going through. It's a scary time and the only way to

alleviate some of the fear is to gather knowledge, ask questions, and make

sure you're doing what YOU want to do. Good luck and don't be afraid to ask

questions here...I know I have asked some seemingly stupid ones and have

found the people here to be so supportive and informative.

New Member/Confused and Scared

>Hi everyone :-)

>Well, I've read a couple of the digests now and I'm really relieved to

>find a place where there are people who might understand what I'm going

>through. I started feeling bad several months ago, particularly

>swelling of my hands and lower legs/feet. The ob/gyn (I was due for a

>check-up) said it was hormones or the heat. I accepted the hormone

>answer for a while since I've been off the pill and we've been trying to

>get pregnant for the past year. But it was dragging out so I went to

>the GP and insisted on a blood test which showed that I had a hyper

>thyroid. The GP says it's Graves. So I had a thyroid exam and the tech

>said that with my scores the doctor would want to do RAI right away.

>But having read more and reading the posts here I'm worried about this.

>I am going to see an endo at (St. Louis) later today and I'm

>going to express my concerns and ask that we try medication first. But

>I don't feel I have any support because my husband (who is really a

>great guy about most things) thinks the RAI is " the answer " . When I

>tell him that I've read things on-line he says the internet is bad for

>medical advice and I'm worrying too much. I feel like I'm being pushed

>toward something that I'm just not sure about and I'm panicking. I'm a

>very, very shy person and standing up myself is not my best thing. What

>can I say to the endo that might help? Any advice would be really

>appreciated! Sorry this is so long, but I needed to vent somewhere and

>you all sound very nice. If you reply could you also reply directly to

>me since I'm on digest for the moment? Thanks!! Marie

>

>

>

[Guest guest]

Dear Marie

Firstly welcome to group. I hope you decide to stick around.

I hope the appointment went well with the endo. I remember how difficult it is

at first. I was diagnosed in May

2000. Since then the most important thing I've learned is to take time to make

decisions that have permanent

consequences (such as RAI & surgery). The Doctors tend to want to get it done in

a hurray. They don't have to live

with it.

ATDs (anti thyroid drugs) will help to reduce the thyroid hormones and may bring

you full remission in 18 months to

a few years. PTU is safe in pregnancy (under 300mg daily I think), see the

archives for more info as some here,

Debbie, and Donna have all got pregnant safely on this drug. Donna is

still waiting for her baby to be born,

Debbie's is now over 4 years old.

Beta blockers will give you good relief immediately for your symptoms while the

ATD kicks in. Then you can spend the

time researching, asking questions and talking to your husband to make the best

decision for you.

My husband and I were trying to fall pregnant for over 2 years. We had a

miscarriage at 7 weeks and another at an

early stage. We went to a fertility clinic and had blood tests taken (which

showed a problem with my thyroid, but

the Dr never informed me). Some months later I felt so sick I went to the GP and

finally after blood tests I was

diagnosed. My levels were so bad that I had a temour, I had a huge goitre, my

pulse rate was around 130 per minute,

and the rest!!! I had all the symptoms acutely.

I was started on PTU (ATD) & atenolol (beta blocker) straight away and they

helped within a week. I then looked at

my options. Here in Australia, the endos don't usually use RAI unless there is

thyroid cancer involved. Meds are

first option then surgery.

I agonised over the decision. You'll find lots of info in the archives (under

, my husband's & email

name) from Sept 2000. I was nearly 40yrs old and felt I didn't have the time to

wait for the ATDs to work. I wasn't

comfortable with falling pregnant on them. I decided to have surgery and had a

subtotal thyroidectomy in Oct 2000. I

fell pregnant in Nov (earlier than expected!) and had a beautiful baby boy on

3rd August 2001.

The pregancy, birth and now breastfedding have had no complications. I did have

a brief period of hypothyroidism

(I'm on replacement meds as my thyroid cant make enough hormones for me, not

quite enough of it left) at about 16 -

18 weeks. My meds were adjusted and I've had no problems with it since.

I understand your husband wanting immediate answers and you to be better ASAP.

But this is a life impacting illness

(in that the GD affects your thyroid which in turn affects so much of your

physical system). GD needs to be treated

from all angles, not just the symptoms caused by your thyroid being over

stimulated.

You can find pictures of our baby at the link below if you want to have a look

and tell your husband that a baby is

possible with this illness, but you need to take your time and consider all

options to chose the right one for you

before rushing into anything permanent.

http://au.photos.yahoo.com/dylan_mp_johnson

Hope I haven't rambled on top much. If you want to ask me anything please don't

hesitate.

Take Care & All the Best

Cheers

Caroline

Marie Lay wrote:

> Hi everyone :-)

> Well, I've read a couple of the digests now and I'm really relieved to

> find a place where there are people who might understand what I'm going

> through. I started feeling bad several months ago, particularly

> swelling of my hands and lower legs/feet. The ob/gyn (I was due for a

> check-up) said it was hormones or the heat. I accepted the hormone

> answer for a while since I've been off the pill and we've been trying to

> get pregnant for the past year. But it was dragging out so I went to

> the GP and insisted on a blood test which showed that I had a hyper

> thyroid. The GP says it's Graves. So I had a thyroid exam and the tech

> said that with my scores the doctor would want to do RAI right away.

> But having read more and reading the posts here I'm worried about this.

> I am going to see an endo at (St. Louis) later today and I'm

> going to express my concerns and ask that we try medication first. But

> I don't feel I have any support because my husband (who is really a

> great guy about most things) thinks the RAI is " the answer " . When I

> tell him that I've read things on-line he says the internet is bad for

> medical advice and I'm worrying too much. I feel like I'm being pushed

> toward something that I'm just not sure about and I'm panicking. I'm a

> very, very shy person and standing up myself is not my best thing. What

> can I say to the endo that might help? Any advice would be really

> appreciated! Sorry this is so long, but I needed to vent somewhere and

> you all sound very nice. If you reply could you also reply directly to

> me since I'm on digest for the moment? Thanks!! Marie

>

>

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

> 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 does not have the endorsement

of

> the listowner or moderators. We have no input as to what ads are attached to

emails.

>

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

------

>

>

[Guest guest]

Hi . What alternative methods are you using. I started the ATD's

a couple of weeks ago, but quit taking the beta blocker and am wondering

if accupunture could help with the heart rate.

Thanks

Lori

-- Original Message --

>Hi Marie -

>Welcome to the group! I was just diagnosed in July, so I know exactly what

>you're feeling right now! It's scary to here you have a disease that you've

>never heard of before and that it's not really curable, merely controllable.

>First of all, how did your GP diagnose? What tests did he/she run? Has

the

>Dr. done Free T3 and Free T4? How about blood tests for antibodies

>associated with Graves'? These tests are more conclusive because there

are

>other thyroid disorders that can mimic hyperthyroidism, yet are temporary

>disturbances to the thyroid. Hopefully, since you're seeing an endo, they'll

>at least do those tests.

>

>Whatever you do, don't rush into anything, especially RAI. I almost did

>because that the time I was diagnosed, I was tired of feeling sick and

just

>wanted to be over and done with this disease and get on with my life. RAI

>seemed like a " quick fix " . Many people on this board will tell you it's

>anything but and that they wish they hadn't had the RAI. Read all you can

>find on GD. There are several good thyroid books (The Thyroid Solution

by

>Ridha Arem and The Thyroid Sourcebook by Rosenthal) that also discuss

>GD, Elaine (on this board) has written a very comprehensive book,

>Graves' Disease A Practical Guide, that you can get through amazon or B & N.

>You can find reliable info on the 'net. I have found New England Journal

>of

>Med. articles online which discuss some of the studies on RAI,

>www.thyroidmanager.org is a good site (very technical, but has an excellent

>section on describing all the treatment options in detail). Don't let your

>Dr. push you into anything, tell him or her that you really want to think

>it

>over before making a " permanent " decision. In the meantime, you can try

>anti-thyroid medications while you research your options. Do you know how

>severe your GD is? I know that mine was caught very early and is very mild

>at this point, so I have opted to try some alternative methods and monitor

>my thyroid levels. I know there are other people here ( B. for one!)

>who

>have had success with alternative methods.

>

>As for your husband, I think it is difficult for men to deal with when

a

>spouse is ill. My husband tells me that men are compelled to solve problems

>and it really drives them crazy when they can't solve or " fix " it. So your

>husband probably likes the RAI idea because it " solves " the problem in

his

>mind. Just take synthetic hormone after and you're back to your old self.

>Unfortunately, it's not that simple. The thyroid isn't the cause, just

the

>immediate problem. It's the underlying autoimmune disease that's the real

>problem. I wouldn't be too hard on him, he just wants to see you better

>as

>quickly as possible and the doctors give the impression that RAI is the

>best

>way to do this. And maybe it will be the best option for you, but just

make

>sure do your homework and think about it first.

>

>Oops, didn't mean for this to be so long...I've crammed so much into my

>own

>brain lately that sometimes it just all spills out! And we all really

>understand what you're going through. It's a scary time and the only way

>to

>alleviate some of the fear is to gather knowledge, ask questions, and make

>sure you're doing what YOU want to do. Good luck and don't be afraid to

>ask

>questions here...I know I have asked some seemingly stupid ones and have

>found the people here to be so supportive and informative.

>

>

> New Member/Confused and Scared

>

>

>>Hi everyone :-)

>>Well, I've read a couple of the digests now and I'm really relieved to

>>find a place where there are people who might understand what I'm going

>>through. I started feeling bad several months ago, particularly

>>swelling of my hands and lower legs/feet. The ob/gyn (I was due for a

>>check-up) said it was hormones or the heat. I accepted the hormone

>>answer for a while since I've been off the pill and we've been trying

to

>>get pregnant for the past year. But it was dragging out so I went to

>>the GP and insisted on a blood test which showed that I had a hyper

>>thyroid. The GP says it's Graves. So I had a thyroid exam and the tech

>>said that with my scores the doctor would want to do RAI right away.

>>But having read more and reading the posts here I'm worried about this.

>>I am going to see an endo at (St. Louis) later today and I'm

>>going to express my concerns and ask that we try medication first. But

>>I don't feel I have any support because my husband (who is really a

>>great guy about most things) thinks the RAI is " the answer " . When I

>>tell him that I've read things on-line he says the internet is bad for

>>medical advice and I'm worrying too much. I feel like I'm being pushed

>>toward something that I'm just not sure about and I'm panicking. I'm

a

>>very, very shy person and standing up myself is not my best thing. What

>>can I say to the endo that might help? Any advice would be really

>>appreciated! Sorry this is so long, but I needed to vent somewhere and

>>you all sound very nice. If you reply could you also reply directly to

>>me since I'm on digest for the moment? Thanks!! Marie

>>

>>

>>

[Guest guest]

Hi Lori,

Most of the things I'm trying some from 's site www.ithyroid.com He is

also a Graves' patient and has been for many years. He has been using

different supplements on the theory that GD may be caused or at least

exacerbated by dietary imbalances. Hey, I don't know if I buy it or not, up

until now, I was all for traditional medicine, but the alternatives for GD

are just so unpleasant that I figured I'd look into alternative choices. If

it's between trying some supplements, herbs, etc. and surgery (my choice if

I get worse), I'll give the supplements a try! I'm fortunate to be early in

the disease, so I have the luxury of being able to try these things first,

an option not everyone has. Anyway, currently I'm taking calcium and

magnesium (magnesium helps lower heart rate), copper, B complex, iron (I'm

anemic anyway), and selenium. I'm working up slowly to others. The ithyroid

site is an interesting read, gives explanations behind what the various

supplements do for you and so on. I'm also trying to find a herbalist or

Chinese medicine doc in my area. I've read about some herb that are useful

for GD, but I don't know enough about it to know how much to use, etc. I

went to an acupuncturist here, but he didn't seem to think he could really

do anything for me (I don't think he really knew enough about GD to know if

he could help or not), but at least he was honest about telling me so. I

believe other people here have had more useful experiences with acupuncture.

I've also read here that yoga is effective for stress relief, which can

lessen some of the GD symptoms. I was given a beta blocker, too, but after

talking to my mom about taking it (she's a cardiac care nurse), I decided

maybe it was a little too strong for the heart rates I've had. My resting

was about 90-100, and after taking magnesium supps for a few weeks, it was

down to 70-80 and my doc said I didn't need a beta blocker if it was in that

range. How high is your heart rate usually? Check out the magnesium, it

might be worth a try. B here has experience with alternative methods,

too. Her story is on the ithyroid site under Thyroid Eye Disease or

something similar (can't remember exactly) so she could add some input, too.

Check out her prior posts in the archives for this board.

New Member/Confused and Scared

>>

>>

>>>Hi everyone :-)

>>>Well, I've read a couple of the digests now and I'm really relieved to

>>>find a place where there are people who might understand what I'm going

>>>through. I started feeling bad several months ago, particularly

>>>swelling of my hands and lower legs/feet. The ob/gyn (I was due for a

>>>check-up) said it was hormones or the heat. I accepted the hormone

>>>answer for a while since I've been off the pill and we've been trying

>to

>>>get pregnant for the past year. But it was dragging out so I went to

>>>the GP and insisted on a blood test which showed that I had a hyper

>>>thyroid. The GP says it's Graves. So I had a thyroid exam and the tech

>>>said that with my scores the doctor would want to do RAI right away.

>>>But having read more and reading the posts here I'm worried about this.

>>>I am going to see an endo at (St. Louis) later today and I'm

>>>going to express my concerns and ask that we try medication first. But

>>>I don't feel I have any support because my husband (who is really a

>>>great guy about most things) thinks the RAI is " the answer " . When I

>>>tell him that I've read things on-line he says the internet is bad for

>>>medical advice and I'm worrying too much. I feel like I'm being pushed

>>>toward something that I'm just not sure about and I'm panicking. I'm

>a

>>>very, very shy person and standing up myself is not my best thing. What

>>>can I say to the endo that might help? Any advice would be really

>>>appreciated! Sorry this is so long, but I needed to vent somewhere and

>>>you all sound very nice. If you reply could you also reply directly to

>>>me since I'm on digest for the moment? Thanks!! Marie

>>>

>>>

>>>

[Guest guest]

Actually my cardiologist put me on magnesium 600 mg (i think) for two weeks

to see what happens. My heart rate is about the same as yours, but also

have an arrythmia now-skips and boy can I feel it. And if you don't mind

me asking how much do you take of each- I seem to be sensitive and to meds

and I'm a small person so I am scared to go on the high dosages of vitamins.

Thanks for your help!

Lori

-- Original Message --

>Hi Lori,

>

>Most of the things I'm trying some from 's site www.ithyroid.com He

>is

>also a Graves' patient and has been for many years. He has been using

>different supplements on the theory that GD may be caused or at least

>exacerbated by dietary imbalances. Hey, I don't know if I buy it or not,

>up

>until now, I was all for traditional medicine, but the alternatives for

>GD

>are just so unpleasant that I figured I'd look into alternative choices.

>If

>it's between trying some supplements, herbs, etc. and surgery (my choice

>if

>I get worse), I'll give the supplements a try! I'm fortunate to be early

>in

>the disease, so I have the luxury of being able to try these things first,

>an option not everyone has. Anyway, currently I'm taking calcium and

>magnesium (magnesium helps lower heart rate), copper, B complex, iron (I'm

>anemic anyway), and selenium. I'm working up slowly to others. The ithyroid

>site is an interesting read, gives explanations behind what the various

>supplements do for you and so on. I'm also trying to find a herbalist or

>Chinese medicine doc in my area. I've read about some herb that are useful

>for GD, but I don't know enough about it to know how much to use, etc.

I

>went to an acupuncturist here, but he didn't seem to think he could really

>do anything for me (I don't think he really knew enough about GD to know

>if

>he could help or not), but at least he was honest about telling me so.

I

>believe other people here have had more useful experiences with acupuncture.

>I've also read here that yoga is effective for stress relief, which can

>lessen some of the GD symptoms. I was given a beta blocker, too, but after

>talking to my mom about taking it (she's a cardiac care nurse), I decided

>maybe it was a little too strong for the heart rates I've had. My resting

>was about 90-100, and after taking magnesium supps for a few weeks, it

was

>down to 70-80 and my doc said I didn't need a beta blocker if it was in

>that

>range. How high is your heart rate usually? Check out the magnesium, it

>might be worth a try. B here has experience with alternative methods,

>too. Her story is on the ithyroid site under Thyroid Eye Disease or

>something similar (can't remember exactly) so she could add some input,

>too.

>Check out her prior posts in the archives for this board.

>

>

>

> New Member/Confused and Scared

>>>

>>>

>>>>Hi everyone :-)

>>>>Well, I've read a couple of the digests now and I'm really relieved

to

>>>>find a place where there are people who might understand what I'm going

>>>>through. I started feeling bad several months ago, particularly

>>>>swelling of my hands and lower legs/feet. The ob/gyn (I was due for

>a

>>>>check-up) said it was hormones or the heat. I accepted the hormone

>>>>answer for a while since I've been off the pill and we've been trying

>>to

>>>>get pregnant for the past year. But it was dragging out so I went to

>>>>the GP and insisted on a blood test which showed that I had a hyper

>>>>thyroid. The GP says it's Graves. So I had a thyroid exam and the

tech

>>>>said that with my scores the doctor would want to do RAI right away.

>>>>But having read more and reading the posts here I'm worried about this.

>>>>I am going to see an endo at (St. Louis) later today and I'm

>>>>going to express my concerns and ask that we try medication first.

But

>>>>I don't feel I have any support because my husband (who is really a

>>>>great guy about most things) thinks the RAI is " the answer " . When I

>>>>tell him that I've read things on-line he says the internet is bad for

>>>>medical advice and I'm worrying too much. I feel like I'm being pushed

>>>>toward something that I'm just not sure about and I'm panicking. I'm

>>a

>>>>very, very shy person and standing up myself is not my best thing.

What

>>>>can I say to the endo that might help? Any advice would be really

>>>>appreciated! Sorry this is so long, but I needed to vent somewhere

and

>>>>you all sound very nice. If you reply could you also reply directly

>to

>>>>me since I'm on digest for the moment? Thanks!! Marie

>>>>

>>>>

>>>>

[Guest guest]

Lori,

I know exactly what you mean about being sensitive to meds! That's why I'm

afraid of the ATD's...I've got so many drug reactions already who knows what

would happen with something strong like that. I'm allergic to 3 of the 5

major kinds of penicillin. The only ones I can tolerate are the cheap ones,

which works out well for the wallet! :-) Painkillers? I'm better off with

the pain, the few painkillers I've had have made me feel worse than the

original pain! I'm a small person myself. 5'6'' (I've shrunk an inch!) and

113 lbs. now (GD weight loss is NOT what I needed). I'd ask everyone for

tips on gaining weight with GD, but I'm afraid I'd be lynched! Does anyone

else have this problem?

I've run the amounts I take by a doctor and he said I'm not taking any

harmful levels. Currently I'm taking 1000 mg. Calcium/500 mg magnesium/200

IU Vit. D (all one tablet), 4 mg copper, 100 mg selenium, 250 mg Vit. C, 50

mg B complex (don't have the bottle handy, so don't have the list of

specifics), and 18 mg iron. I found that I have better results with heart

rate with 750 mg magnesium, so I think I'm going to have to increase again.

All these amounts are from the www.ithyroid.com site. I'm in the process of

adding some others, I guess the idea is to add them gradually to see how you

react to them. I'd start with cal/mag for a week or so, then add others if

you want. That way you can determine which supp may be giving you problems

if you experience them.

Just out of curiosity, what does it feel like when you have an arrhythmia? I

wonder if mine does that sometimes, but I haven't a clue what it would be

like. I've got a history of having a high pain threshold and therefore not

realizing when something is wrong, so I'm always slightly paranoid that I

might have a problem and not know it! Whenever someone says you'll know it

when...<insert medical problem here>, I'm the one person who that doesn't

apply to. Scariest example of this is I walked into the hospital to get an

ultrasound and found out that I had a ruptured ectopic pregnancy and was

bleeding internally for hours. Hey, I just felt like I had really bad gas!

Horrible nightmare story, but we can laugh about it now. And no, unlike what

the Lamaze lady said, I did not know when I was in labor, either. Thought I

had sprained my back, except that the back spasms were every 7 minutes

apart...hmm. Appreciate any explanation of arrythmias you can describe.

, the clueless woman (GD?, nah, I just have a virus!)

New Member/Confused and Scared

>>>>

>>>>

>>>>>Hi everyone :-)

>>>>>Well, I've read a couple of the digests now and I'm really relieved

>to

>>>>>find a place where there are people who might understand what I'm going

>>>>>through. I started feeling bad several months ago, particularly

>>>>>swelling of my hands and lower legs/feet. The ob/gyn (I was due for

>>a

>>>>>check-up) said it was hormones or the heat. I accepted the hormone

>>>>>answer for a while since I've been off the pill and we've been trying

>>>to

>>>>>get pregnant for the past year. But it was dragging out so I went to

>>>>>the GP and insisted on a blood test which showed that I had a hyper

>>>>>thyroid. The GP says it's Graves. So I had a thyroid exam and the

>tech

>>>>>said that with my scores the doctor would want to do RAI right away.

>>>>>But having read more and reading the posts here I'm worried about this.

>>>>>I am going to see an endo at (St. Louis) later today and I'm

>>>>>going to express my concerns and ask that we try medication first.

>But

>>>>>I don't feel I have any support because my husband (who is really a

>>>>>great guy about most things) thinks the RAI is " the answer " . When I

>>>>>tell him that I've read things on-line he says the internet is bad for

>>>>>medical advice and I'm worrying too much. I feel like I'm being pushed

>>>>>toward something that I'm just not sure about and I'm panicking. I'm

>>>a

>>>>>very, very shy person and standing up myself is not my best thing.

>What

>>>>>can I say to the endo that might help? Any advice would be really

>>>>>appreciated! Sorry this is so long, but I needed to vent somewhere

>and

>>>>>you all sound very nice. If you reply could you also reply directly

>>to

>>>>>me since I'm on digest for the moment? Thanks!! Marie

>>>>>

>>>>>

>>>>>

[Guest guest]

:

Yes I have lost weight too. My doc has me on this magnesium for two weeks

so I will ask him about the supplements as soon as I finish this trial.

The funny thing about this arrythmia is that what first bothered me was

the fast pounding heart-felt it in my stomach and my ears- only when I went

to the Doctor did I find out it was skipping as well- I've got an early

beat so there is a pause between some of my heart beats and when I can really

feel the pounding I can actually feel the beats skip. And sometimes I get

lightheaded or out of breath. But with me the GD seems to bring on

breathlessness

anyway, I think. You can feel mine skip when you take my pulse- it's one

of the things that freaked me out the most with the whole GD mess. So far

the ATD's haven't bothered me, but I am on such a small dose (25 mg 2 times

a day) which I wonder is even enough. But I guess with this whole thing

we're supposed to learn patience. I'm still having problems with that one.

Did you have any wierd effects with the vitamins- how long did you wait

to add a new one?

Lori

-- Original Message --

>Lori,

>

>I know exactly what you mean about being sensitive to meds! That's why

I'm

>afraid of the ATD's...I've got so many drug reactions already who knows

>what

>would happen with something strong like that. I'm allergic to 3 of the

5

>major kinds of penicillin. The only ones I can tolerate are the cheap ones,

>which works out well for the wallet! :-) Painkillers? I'm better off with

>the pain, the few painkillers I've had have made me feel worse than the

>original pain! I'm a small person myself. 5'6'' (I've shrunk an inch!)

and

>113 lbs. now (GD weight loss is NOT what I needed). I'd ask everyone for

>tips on gaining weight with GD, but I'm afraid I'd be lynched! Does anyone

>else have this problem?

>

>I've run the amounts I take by a doctor and he said I'm not taking any

>harmful levels. Currently I'm taking 1000 mg. Calcium/500 mg magnesium/200

>IU Vit. D (all one tablet), 4 mg copper, 100 mg selenium, 250 mg Vit. C,

>50

>mg B complex (don't have the bottle handy, so don't have the list of

>specifics), and 18 mg iron. I found that I have better results with heart

>rate with 750 mg magnesium, so I think I'm going to have to increase again.

>All these amounts are from the www.ithyroid.com site. I'm in the process

>of

>adding some others, I guess the idea is to add them gradually to see how

>you

>react to them. I'd start with cal/mag for a week or so, then add others

>if

>you want. That way you can determine which supp may be giving you problems

>if you experience them.

>

>Just out of curiosity, what does it feel like when you have an arrhythmia?

>I

>wonder if mine does that sometimes, but I haven't a clue what it would

be

>like. I've got a history of having a high pain threshold and therefore

not

>realizing when something is wrong, so I'm always slightly paranoid that

>I

>might have a problem and not know it! Whenever someone says you'll know

>it

>when...<insert medical problem here>, I'm the one person who that doesn't

>apply to. Scariest example of this is I walked into the hospital to get

>an

>ultrasound and found out that I had a ruptured ectopic pregnancy and was

>bleeding internally for hours. Hey, I just felt like I had really bad gas!

>Horrible nightmare story, but we can laugh about it now. And no, unlike

>what

>the Lamaze lady said, I did not know when I was in labor, either. Thought

>I

>had sprained my back, except that the back spasms were every 7 minutes

>apart...hmm. Appreciate any explanation of arrythmias you can describe.

>

>, the clueless woman (GD?, nah, I just have a virus!)

>

> New Member/Confused and Scared

>>>>>

>>>>>

>>>>>>Hi everyone :-)

>>>>>>Well, I've read a couple of the digests now and I'm really relieved

>>to

>>>>>>find a place where there are people who might understand what I'm

going

>>>>>>through. I started feeling bad several months ago, particularly

>>>>>>swelling of my hands and lower legs/feet. The ob/gyn (I was due for

>>>a

>>>>>>check-up) said it was hormones or the heat. I accepted the hormone

>>>>>>answer for a while since I've been off the pill and we've been trying

>>>>to

>>>>>>get pregnant for the past year. But it was dragging out so I went

>to

>>>>>>the GP and insisted on a blood test which showed that I had a hyper

>>>>>>thyroid. The GP says it's Graves. So I had a thyroid exam and the

>>tech

>>>>>>said that with my scores the doctor would want to do RAI right away.

>>>>>>But having read more and reading the posts here I'm worried about

this.

>>>>>>I am going to see an endo at (St. Louis) later today and I'm

>>>>>>going to express my concerns and ask that we try medication first.

>>But

>>>>>>I don't feel I have any support because my husband (who is really

a

>>>>>>great guy about most things) thinks the RAI is " the answer " . When

>I

>>>>>>tell him that I've read things on-line he says the internet is bad

>for

>>>>>>medical advice and I'm worrying too much. I feel like I'm being pushed

>>>>>>toward something that I'm just not sure about and I'm panicking.

I'm

>>>>a

>>>>>>very, very shy person and standing up myself is not my best thing.

>>What

>>>>>>can I say to the endo that might help? Any advice would be really

>>>>>>appreciated! Sorry this is so long, but I needed to vent somewhere

>>and

>>>>>>you all sound very nice. If you reply could you also reply directly

>>>to

>>>>>>me since I'm on digest for the moment? Thanks!! Marie

>>>>>>

>>>>>>

>>>>>>

[Guest guest]

,

I had problems gaining weight for awhile too. Just before I was

diagnosed I was 5'4 " and 99 pounds. I also kept losing and then I got

pneumonia and then I found out I had food allergies and then I found

out I had GD.

I am allergic to cheese, wheat and eggs, etc...so this made

my weight even more of a dilemma. How could I gain?

I also had totally stopped all excercise because of arrythmia and

shortness of breath. Well, here's what finally happened:

After the first few months on ATD's I gained 40 pounds. Yikes! Then I

got the okay from the Doc to begin excercise again as my heart

symptoms had calmed down. Once i began the yoga and walking, I lost

20 of the fourty pounds..phew! I feel pretty good now, and I have

gained back some of that vital muscle mass that had all but

disappeared. I actually look much better than I have in years..

That's my experience with being too thin, one doc even diagnosed me

with anorexia and " mental problems " about 2 years before I found out

about the GD. Anorexia! Yeah right, I was eating about 12 meals a day.

Anyhow, I hope that helps.

Val

[Guest guest]

Thanks Val, this does help...It's also heartening to know I'm not the only

one with this problem! Yikes, pneumonia and food allergies would make

gaining difficult. I can't imagine how you navigate around those common

foods...they seem to be in everything, even things you wouldn't think of. I

know what you mean about the exercise issue. I can't say that I really

seriously exercised before I had GD, but now that I can't really do anything

strenuous, I feel sluglike. I have started trying yoga, and I found that I

like it because I never really liked " aerobic " type exercises to begin with.

Too fast or something. I like the slower movements with yoga. Do you have

any books and/or tapes that you would recommend for home use? I took a

class, but with 3 kids, it's hard to get to the weekly sessions. I think the

muscle loss bothers me more than the weight loss, I'd like to build that

back up. I hear ya on the anorexia thing, too. I got tired of getting " that

look " from doctors! My mom's even worse... " Eat, eat, you need to eat

more...you're too thin! " She always brings me chocolates when she comes to

visit (not that I mind that at all!) I think my weight loss has at least

stabilized, so maybe now I can gain some back. Thanks for the encouragement!

, the skeleton (hubby says I'm all ready for Halloween)

Re: New Member/Confused and Scared

>,

>

>I had problems gaining weight for awhile too. Just before I was

>diagnosed I was 5'4 " and 99 pounds. I also kept losing and then I got

>pneumonia and then I found out I had food allergies and then I found

>out I had GD.

>

>I am allergic to cheese, wheat and eggs, etc...so this made

>my weight even more of a dilemma. How could I gain?

>I also had totally stopped all excercise because of arrythmia and

>shortness of breath. Well, here's what finally happened:

>

>After the first few months on ATD's I gained 40 pounds. Yikes! Then I

>got the okay from the Doc to begin excercise again as my heart

>symptoms had calmed down. Once i began the yoga and walking, I lost

>20 of the fourty pounds..phew! I feel pretty good now, and I have

>gained back some of that vital muscle mass that had all but

>disappeared. I actually look much better than I have in years..

>

>That's my experience with being too thin, one doc even diagnosed me

>with anorexia and " mental problems " about 2 years before I found out

>about the GD. Anorexia! Yeah right, I was eating about 12 meals a day.

>

>Anyhow, I hope that helps.

>

>Val

>

>

>

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

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intended to replace expert medical care.

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

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

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>

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

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>

[Guest guest]

Lori -

No, I didn't really have problems with any of the vits I've had so far.

Maybe the only one to watch out for is copper. Take it with food. I found

that if I didn't eat enough breakfast and then took the copper, I'd get a

bit of an upset stomach, but it would go away almost immediately after

eating or drinking something. Also, if you're going to take iron, don't take

it at the same time as calcium, wait a few hours in between because calcium

can interfere with the iron absorption (or vice versa, I can't remember

which). I just learned that one myself! I usually would wait a week before

adding a new supplement. That may be a bit on the long side, but I think I'd

wait at least 3 days before adding another.

Sounds scary about the skipping! I'm guessing that would be frightening

enough for me to notice. Just as a warning, don't be surprised if your

doctor pooh-poohs the supplements idea. The 2 that I saw did. I finally got

a Dr. who will at least monitor while I try them. You can still use

supplements while doing ATDs. There is a bulletin board on the ithyroid site

and several people there are using both supplements and ATDs. I get the

impression that they use the vits and as they improve, they decrease their

ATDs. But you can find out more from them directly. I hope the ATDs help

stop your arrythmia quickly!

Re: New Member/Confused and Scared

>

>:

>Yes I have lost weight too. My doc has me on this magnesium for two weeks

>so I will ask him about the supplements as soon as I finish this trial.

>The funny thing about this arrythmia is that what first bothered me was

>the fast pounding heart-felt it in my stomach and my ears- only when I went

>to the Doctor did I find out it was skipping as well- I've got an early

>beat so there is a pause between some of my heart beats and when I can

really

>feel the pounding I can actually feel the beats skip. And sometimes I get

>lightheaded or out of breath. But with me the GD seems to bring on

breathlessness

>anyway, I think. You can feel mine skip when you take my pulse- it's one

>of the things that freaked me out the most with the whole GD mess. So far

>the ATD's haven't bothered me, but I am on such a small dose (25 mg 2 times

>a day) which I wonder is even enough. But I guess with this whole thing

>we're supposed to learn patience. I'm still having problems with that one.

>Did you have any wierd effects with the vitamins- how long did you wait

>to add a new one?

>

>Lori

[Guest guest]

,

The book I use and really like is called " Yoga for Beginners " by: Mark

Ansari and Liz Lark. It's really cool. It's long and wide with spiral

binding, and a folding bottom, so that it actually stands up on it's

own while you use it. What I also like is that there are not only

pictures (which in my opinion can be confusing) but text that lays out

each pose step by step.

I have found the yoga to be great for rebuilding the muscle mass which

as we all know is key to health. I also never excercised much before

my diagnosis but now the yoga is great! It's not boring

like a stupid stair climber and it's really helped me relieve mental

stress and help tune my body and mind together.

Well enough of that.

Talk to you later,

Val