New Here

[Guest guest]

Hi Diane,

Welcome to the group. I'm glad you found us now. I know what you mean

about wishing you had access to groups such as this when you were diagnosed,

I didn't either and trusted my doctor, my endo and the little bit of

literature they gave me and went ahead with the RAI, which I have regretted

since 6 weeks after having it...but now I have a good endo and am doing so

much better!

The thyroid gland is capable of regenerating itself, though rare, it does

happen, and that is what sounds like may have gone on with you.

My current endo does not do RAI anymore, but she also will not do a

sub-total thyroidectomy anymore either for this very reason. Personally I

agree with leaving some in there and having some natural hormone in our

bodies also. Maybe they will find a way to continue to lower antibodies and

push for remission in patients who have sub-totals. To do so, lifestyle

changes, diet changes and stress reduction would also be extremely

necessary, I believe.

>>>endo is talking rai soon after surgery to remove nodules. everything i

>>>read here has me questioning this alot. besides that i really do not

>>>like his attitude. keeps reminding me first visit that he was doing a

>>>favor working me in and ends with if i had had rai the first time instead

>>>of surgery i may not be going through this now and the money i saved on

>>>medication i am going to blow on this surgery

alone. i was only trusting my doctor and doing what he told me.<<<

I know very little about cold nodules, I am really just beginning to learn

about them from other patients facing what you are now facing. I don't

understand what this endo is talking about, RAI after surgery to remove

nodules?

As for his " I AM God " attitude, I would find a new endo ASAP! He works FOR

you, you are not there to take his abuse and dissmissal. I know that you

need to find out about these cold nodules, this is very important, but I am

wondering if the TAP keeps you from being hyper, if that won't buy you the

time to get into a different endo. You may be able to find one in your area

from the top docs site at about.com. Doctors here are recommended by other

patients and it is where I found my current endo <after firing 2 endos, and

now 2 primary's> and I love her. Not everyone who sees doctors from this

sight has good luck with every doctor, but for many people this site has

been a blessing.

Here is the url

http://thyroid.about.com/library/weekly/bldoc1.htm

I drive 2 hours to see my endo and even though most of it is thruway driving

which stresses me a lot, it is well worth the drive for me!

See if you can find one from there, talk to your GP and ask if you have the

time to wait to get into another endo, will the tap stabilize you and could

he/she do the proper testing on the nodules. Once you have an appointment,

you could call on a weekly basis to the new docs and ask if they have any

cancelations that would move up your appointment. This has worked for

several people.

I am glad you have found us, keep reading, asking questions and know we are

all in this together. Now you know your not alone anymore, and for me, that

made a huge difference in itself.

If you don't have the book Graves Disease; A Practical Guide by Elaine

, I would recommend it to you. It will teach you so very much as you

move forward in your journey to feeling better. You can call your library

and see if they have it, or if they would get it, and you could order it

from barnesandnoble.com or amazon.com. it is 20% discounted ;-)

Take care,

Jody

_________________________________________________________________

Join the world’s largest e-mail service with MSN Hotmail.

http://www.hotmail.com

[Guest guest]

Hi Diane,

Welcome to the group. I'm glad you found us now. I know what you mean

about wishing you had access to groups such as this when you were diagnosed,

I didn't either and trusted my doctor, my endo and the little bit of

literature they gave me and went ahead with the RAI, which I have regretted

since 6 weeks after having it...but now I have a good endo and am doing so

much better!

The thyroid gland is capable of regenerating itself, though rare, it does

happen, and that is what sounds like may have gone on with you.

My current endo does not do RAI anymore, but she also will not do a

sub-total thyroidectomy anymore either for this very reason. Personally I

agree with leaving some in there and having some natural hormone in our

bodies also. Maybe they will find a way to continue to lower antibodies and

push for remission in patients who have sub-totals. To do so, lifestyle

changes, diet changes and stress reduction would also be extremely

necessary, I believe.

>>>endo is talking rai soon after surgery to remove nodules. everything i

>>>read here has me questioning this alot. besides that i really do not

>>>like his attitude. keeps reminding me first visit that he was doing a

>>>favor working me in and ends with if i had had rai the first time instead

>>>of surgery i may not be going through this now and the money i saved on

>>>medication i am going to blow on this surgery

alone. i was only trusting my doctor and doing what he told me.<<<

I know very little about cold nodules, I am really just beginning to learn

about them from other patients facing what you are now facing. I don't

understand what this endo is talking about, RAI after surgery to remove

nodules?

As for his " I AM God " attitude, I would find a new endo ASAP! He works FOR

you, you are not there to take his abuse and dissmissal. I know that you

need to find out about these cold nodules, this is very important, but I am

wondering if the TAP keeps you from being hyper, if that won't buy you the

time to get into a different endo. You may be able to find one in your area

from the top docs site at about.com. Doctors here are recommended by other

patients and it is where I found my current endo <after firing 2 endos, and

now 2 primary's> and I love her. Not everyone who sees doctors from this

sight has good luck with every doctor, but for many people this site has

been a blessing.

Here is the url

http://thyroid.about.com/library/weekly/bldoc1.htm

I drive 2 hours to see my endo and even though most of it is thruway driving

which stresses me a lot, it is well worth the drive for me!

See if you can find one from there, talk to your GP and ask if you have the

time to wait to get into another endo, will the tap stabilize you and could

he/she do the proper testing on the nodules. Once you have an appointment,

you could call on a weekly basis to the new docs and ask if they have any

cancelations that would move up your appointment. This has worked for

several people.

I am glad you have found us, keep reading, asking questions and know we are

all in this together. Now you know your not alone anymore, and for me, that

made a huge difference in itself.

If you don't have the book Graves Disease; A Practical Guide by Elaine

, I would recommend it to you. It will teach you so very much as you

move forward in your journey to feeling better. You can call your library

and see if they have it, or if they would get it, and you could order it

from barnesandnoble.com or amazon.com. it is 20% discounted ;-)

Take care,

Jody

_________________________________________________________________

Join the world’s largest e-mail service with MSN Hotmail.

http://www.hotmail.com

[Guest guest]

Welcome to the group Kristi!

Glad you found another Endo...sorry you had to learn the hard way that Endo

#1 was not so good. The same thing happened to me....horribly overmedicated

on ATD...and I totally agree with you regarding hypo being worse than hyper.

For me, hypo was a nightmare, hyper I can tolerate much better....although my

hubby might disagree with this one! LOL

Take care, glad you found us!

Doris

[Guest guest]

Welcome to the group Kristi!

Glad you found another Endo...sorry you had to learn the hard way that Endo

#1 was not so good. The same thing happened to me....horribly overmedicated

on ATD...and I totally agree with you regarding hypo being worse than hyper.

For me, hypo was a nightmare, hyper I can tolerate much better....although my

hubby might disagree with this one! LOL

Take care, glad you found us!

Doris

[Guest guest]

Welcome to the group Kristi!

Glad you found another Endo...sorry you had to learn the hard way that Endo

#1 was not so good. The same thing happened to me....horribly overmedicated

on ATD...and I totally agree with you regarding hypo being worse than hyper.

For me, hypo was a nightmare, hyper I can tolerate much better....although my

hubby might disagree with this one! LOL

Take care, glad you found us!

Doris

[Guest guest]

Hi Kristi,

Welcome to the group! Good for you for doing your homework FIRST!

I don't take copper but there are a few here who have tried it. Do a search

in the archives for . She has made tremendous strides using

supplements with lifestyle and diet changes. I know she will write when she

gets your post

Are you getting copies of all of your lab work? If not, get them, they will

really help you so very much to reach your *normal* range in labs for where

YOU feel good.

Doctors who behave like your first doctor did, should have their liscense to

practice taken away from them forever! As for pushing RAI, I really don't

know why they continue to push it, unless they still believe what they

learned in medical shool from 30 year old books on graves...or if they make

money off of every person they con into RAI.

I had it in '96 because my doctor lied to me...I have regretted it ever

since then and continue to fight those hypo feelings every day.

If you don't have the book Graves Disease; A Practical Guide by Elaine

, I highly recommend it. It will really jumpstart your knowledge and

learning experience and help you become even more proactive in your

treatment. Another excellent book is The Thyroid Solution by Dr. Ridha

Arem...a great overall thyroid book and gives good explanations to the

emotion and mental side of things.

You can get both at amazon.com and barnesandnoble.com...at barnesandnoble

they are both 20% discounted and with the purchase of more than 1 item you

get free shipping. Both of these books are worth the expense.

Take care and again, welcome,

Jody

PS If you feel you need to find another new endo, check the list here for

your state...these doctors are recommended by other patients. It doesn't

work for everyone to be matched up with a good doctor, but it did work for

me.

http://thyroid.about.com/library/weekly/bldoc1.htm

_________________________________________________________________

Send and receive Hotmail on your mobile device: http://mobile.msn.com

[Guest guest]

Hi Kristi,

Welcome to the group! Good for you for doing your homework FIRST!

I don't take copper but there are a few here who have tried it. Do a search

in the archives for . She has made tremendous strides using

supplements with lifestyle and diet changes. I know she will write when she

gets your post

Are you getting copies of all of your lab work? If not, get them, they will

really help you so very much to reach your *normal* range in labs for where

YOU feel good.

Doctors who behave like your first doctor did, should have their liscense to

practice taken away from them forever! As for pushing RAI, I really don't

know why they continue to push it, unless they still believe what they

learned in medical shool from 30 year old books on graves...or if they make

money off of every person they con into RAI.

I had it in '96 because my doctor lied to me...I have regretted it ever

since then and continue to fight those hypo feelings every day.

If you don't have the book Graves Disease; A Practical Guide by Elaine

, I highly recommend it. It will really jumpstart your knowledge and

learning experience and help you become even more proactive in your

treatment. Another excellent book is The Thyroid Solution by Dr. Ridha

Arem...a great overall thyroid book and gives good explanations to the

emotion and mental side of things.

You can get both at amazon.com and barnesandnoble.com...at barnesandnoble

they are both 20% discounted and with the purchase of more than 1 item you

get free shipping. Both of these books are worth the expense.

Take care and again, welcome,

Jody

PS If you feel you need to find another new endo, check the list here for

your state...these doctors are recommended by other patients. It doesn't

work for everyone to be matched up with a good doctor, but it did work for

me.

http://thyroid.about.com/library/weekly/bldoc1.htm

_________________________________________________________________

Send and receive Hotmail on your mobile device: http://mobile.msn.com

[Guest guest]

Hi Kristi,

Welcome to the group! Good for you for doing your homework FIRST!

I don't take copper but there are a few here who have tried it. Do a search

in the archives for . She has made tremendous strides using

supplements with lifestyle and diet changes. I know she will write when she

gets your post

Are you getting copies of all of your lab work? If not, get them, they will

really help you so very much to reach your *normal* range in labs for where

YOU feel good.

Doctors who behave like your first doctor did, should have their liscense to

practice taken away from them forever! As for pushing RAI, I really don't

know why they continue to push it, unless they still believe what they

learned in medical shool from 30 year old books on graves...or if they make

money off of every person they con into RAI.

I had it in '96 because my doctor lied to me...I have regretted it ever

since then and continue to fight those hypo feelings every day.

If you don't have the book Graves Disease; A Practical Guide by Elaine

, I highly recommend it. It will really jumpstart your knowledge and

learning experience and help you become even more proactive in your

treatment. Another excellent book is The Thyroid Solution by Dr. Ridha

Arem...a great overall thyroid book and gives good explanations to the

emotion and mental side of things.

You can get both at amazon.com and barnesandnoble.com...at barnesandnoble

they are both 20% discounted and with the purchase of more than 1 item you

get free shipping. Both of these books are worth the expense.

Take care and again, welcome,

Jody

PS If you feel you need to find another new endo, check the list here for

your state...these doctors are recommended by other patients. It doesn't

work for everyone to be matched up with a good doctor, but it did work for

me.

http://thyroid.about.com/library/weekly/bldoc1.htm

_________________________________________________________________

Send and receive Hotmail on your mobile device: http://mobile.msn.com

[Guest guest]

Kristi -

Welcome to the group! It's good that you did your homework before having the

RAI - it's not something to rush into, especially when you have small

children at home. I had the same thing almost happen. I was diagnosed after

my third baby was born. Had the RAI appt. scheduled, started reading

experiences from people who actually had it as well as other treatments and

cancelled it.

Don't discount the value of stress management and dietary changes. There are

several people here who have incorporated them with ATDs and achieved

remission. Can't really help with the muscle pains, although a lot of people

on ATDs say they have experienced similar pains as well, a side effect of

the medication. As for the alkaline phosphatase - Elaine can answer this

better I'm sure - but I believe the ATDs can cause this to be elevated. Best

to keep checking it, glad it's still normal range. Doctors like to recommend

RAI because it's _easier_ for the doctor to manage. Not all this labwork and

adjusting medications like you have to do with ATDs. A lot of them are also

under the delusion that hypothyroid is easier to treat than hyperthyroid

(right Jody :-) )

I have taken copper as well as other supplements and found them very helpful

for me. My thyroid hormone levels went back down to normal about 2-3 months

after I started taking them. So far, I am still euthyroid almost 9 months

later and my TSH is back to normal after being non-existent. If you take

copper, start with a small amount so you can see how it affects you. I

started with 2mg. and took that for about a month before I increased to 4mg.

Take it with food, because it can cause stomach upset. It's also a good idea

to split the doses. When I was taking 4mg, I would take 2 in the morning and

2 at dinner.

Good luck and watch out for those hypo symptoms!

New here

>Hi Everybody,

>Well, I can't begin to tell you all what a help it has been to read your

posts. I was diagnosed with Graves in December. My family doctor referred

me to an endo that I now realize is a quack. He insisted that I needed RAI

and I actually scheduled the appointment. Then I went home and read

everything I could about it, mostly because I have two small children, ages

3 and 1, and I was worried about the precautions he gave me. I decided not

to do the RAI and asked him to start me on ATDs. He put me on 40 mg of

tapazole a day. He had me come in after about 3 weeks and my hands were

shaking a little bit so he increased the dosage to 2 pills every 8 hours.

(without a blood test or anything) Not long afterwards I started having

horrible muscle pains. It got so bad I finally went to the emergency room

one night. The ER doctor gave me muscle relaxers and sent me home, making

me feel like a complete hypochondriac. I went back to my endo and he said

that I should see a neurologist and that I should have the RAI since I

seemed to be " having trouble " with the ATDs. He obviously thought it was

all in my head. ANYWAY, to make a long story a little less long, I finally

decided to look for another endo. By this time I was about 15 pounds

heavier than I'd been when I started the medication. She did the blood work

and (as most of you might guess), I was pretty HYPO by that point. She

reduced my dosage to 1 pill a day which sent my body into a tailspin. I

started having problems with fibrocystic breast condition which my gyno

thinks was from the drastic reduction in tapazole. My new endo is better

than the other one, but she also encouraged me to have RAI. Why are doctors

so eager for patients to do this? Anyway, I asked her about diet and stress

reduction, as I had read the benefits of lifestyle changes, but she said

there was nothing I could do to improve the condition except take medication

or do RAI. I don't believe that and have started some lifestyle changes,

although I find the dietary changes very difficult to manage.

>I think I might be getting a little hyper again, but I have a doctor's

appointment in a week and will wait for the blood work. I have to say,

hyper is definetly better than hypo in my opinion!! I never want to feel

that bad again. Shaky hands and a fast heartbeat were much more manageable

than those debilitating muscle cramps. I am taking supplements. I'm

curious if anyone here takes copper and if so, how much? I haven't tried

that yet. Also, has anyone had a high alkaline phosphatase count in their

blood work? Mine was pretty high when I first went in, but at my last

appointment it had gone down quite a bit. Still not normal though. The

endo said we'll check it again next week and see if it's a problem.

>Well, thank you all for sharing your stories. I've learned so much, but I

know I still have more to learn. Some days I feel like this thing is

kicking me all over town, others I feel more in control. It's a comfort to

know that others are experiencing the same frustrations. Thank you all!

>Kristi

>

>

>

[Guest guest]

Kristi -

Welcome to the group! It's good that you did your homework before having the

RAI - it's not something to rush into, especially when you have small

children at home. I had the same thing almost happen. I was diagnosed after

my third baby was born. Had the RAI appt. scheduled, started reading

experiences from people who actually had it as well as other treatments and

cancelled it.

Don't discount the value of stress management and dietary changes. There are

several people here who have incorporated them with ATDs and achieved

remission. Can't really help with the muscle pains, although a lot of people

on ATDs say they have experienced similar pains as well, a side effect of

the medication. As for the alkaline phosphatase - Elaine can answer this

better I'm sure - but I believe the ATDs can cause this to be elevated. Best

to keep checking it, glad it's still normal range. Doctors like to recommend

RAI because it's _easier_ for the doctor to manage. Not all this labwork and

adjusting medications like you have to do with ATDs. A lot of them are also

under the delusion that hypothyroid is easier to treat than hyperthyroid

(right Jody :-) )

I have taken copper as well as other supplements and found them very helpful

for me. My thyroid hormone levels went back down to normal about 2-3 months

after I started taking them. So far, I am still euthyroid almost 9 months

later and my TSH is back to normal after being non-existent. If you take

copper, start with a small amount so you can see how it affects you. I

started with 2mg. and took that for about a month before I increased to 4mg.

Take it with food, because it can cause stomach upset. It's also a good idea

to split the doses. When I was taking 4mg, I would take 2 in the morning and

2 at dinner.

Good luck and watch out for those hypo symptoms!

New here

>Hi Everybody,

>Well, I can't begin to tell you all what a help it has been to read your

posts. I was diagnosed with Graves in December. My family doctor referred

me to an endo that I now realize is a quack. He insisted that I needed RAI

and I actually scheduled the appointment. Then I went home and read

everything I could about it, mostly because I have two small children, ages

3 and 1, and I was worried about the precautions he gave me. I decided not

to do the RAI and asked him to start me on ATDs. He put me on 40 mg of

tapazole a day. He had me come in after about 3 weeks and my hands were

shaking a little bit so he increased the dosage to 2 pills every 8 hours.

(without a blood test or anything) Not long afterwards I started having

horrible muscle pains. It got so bad I finally went to the emergency room

one night. The ER doctor gave me muscle relaxers and sent me home, making

me feel like a complete hypochondriac. I went back to my endo and he said

that I should see a neurologist and that I should have the RAI since I

seemed to be " having trouble " with the ATDs. He obviously thought it was

all in my head. ANYWAY, to make a long story a little less long, I finally

decided to look for another endo. By this time I was about 15 pounds

heavier than I'd been when I started the medication. She did the blood work

and (as most of you might guess), I was pretty HYPO by that point. She

reduced my dosage to 1 pill a day which sent my body into a tailspin. I

started having problems with fibrocystic breast condition which my gyno

thinks was from the drastic reduction in tapazole. My new endo is better

than the other one, but she also encouraged me to have RAI. Why are doctors

so eager for patients to do this? Anyway, I asked her about diet and stress

reduction, as I had read the benefits of lifestyle changes, but she said

there was nothing I could do to improve the condition except take medication

or do RAI. I don't believe that and have started some lifestyle changes,

although I find the dietary changes very difficult to manage.

>I think I might be getting a little hyper again, but I have a doctor's

appointment in a week and will wait for the blood work. I have to say,

hyper is definetly better than hypo in my opinion!! I never want to feel

that bad again. Shaky hands and a fast heartbeat were much more manageable

than those debilitating muscle cramps. I am taking supplements. I'm

curious if anyone here takes copper and if so, how much? I haven't tried

that yet. Also, has anyone had a high alkaline phosphatase count in their

blood work? Mine was pretty high when I first went in, but at my last

appointment it had gone down quite a bit. Still not normal though. The

endo said we'll check it again next week and see if it's a problem.

>Well, thank you all for sharing your stories. I've learned so much, but I

know I still have more to learn. Some days I feel like this thing is

kicking me all over town, others I feel more in control. It's a comfort to

know that others are experiencing the same frustrations. Thank you all!

>Kristi

>

>

>

[Guest guest]

Kristi -

Welcome to the group! It's good that you did your homework before having the

RAI - it's not something to rush into, especially when you have small

children at home. I had the same thing almost happen. I was diagnosed after

my third baby was born. Had the RAI appt. scheduled, started reading

experiences from people who actually had it as well as other treatments and

cancelled it.

Don't discount the value of stress management and dietary changes. There are

several people here who have incorporated them with ATDs and achieved

remission. Can't really help with the muscle pains, although a lot of people

on ATDs say they have experienced similar pains as well, a side effect of

the medication. As for the alkaline phosphatase - Elaine can answer this

better I'm sure - but I believe the ATDs can cause this to be elevated. Best

to keep checking it, glad it's still normal range. Doctors like to recommend

RAI because it's _easier_ for the doctor to manage. Not all this labwork and

adjusting medications like you have to do with ATDs. A lot of them are also

under the delusion that hypothyroid is easier to treat than hyperthyroid

(right Jody :-) )

I have taken copper as well as other supplements and found them very helpful

for me. My thyroid hormone levels went back down to normal about 2-3 months

after I started taking them. So far, I am still euthyroid almost 9 months

later and my TSH is back to normal after being non-existent. If you take

copper, start with a small amount so you can see how it affects you. I

started with 2mg. and took that for about a month before I increased to 4mg.

Take it with food, because it can cause stomach upset. It's also a good idea

to split the doses. When I was taking 4mg, I would take 2 in the morning and

2 at dinner.

Good luck and watch out for those hypo symptoms!

New here

>Hi Everybody,

>Well, I can't begin to tell you all what a help it has been to read your

posts. I was diagnosed with Graves in December. My family doctor referred

me to an endo that I now realize is a quack. He insisted that I needed RAI

and I actually scheduled the appointment. Then I went home and read

everything I could about it, mostly because I have two small children, ages

3 and 1, and I was worried about the precautions he gave me. I decided not

to do the RAI and asked him to start me on ATDs. He put me on 40 mg of

tapazole a day. He had me come in after about 3 weeks and my hands were

shaking a little bit so he increased the dosage to 2 pills every 8 hours.

(without a blood test or anything) Not long afterwards I started having

horrible muscle pains. It got so bad I finally went to the emergency room

one night. The ER doctor gave me muscle relaxers and sent me home, making

me feel like a complete hypochondriac. I went back to my endo and he said

that I should see a neurologist and that I should have the RAI since I

seemed to be " having trouble " with the ATDs. He obviously thought it was

all in my head. ANYWAY, to make a long story a little less long, I finally

decided to look for another endo. By this time I was about 15 pounds

heavier than I'd been when I started the medication. She did the blood work

and (as most of you might guess), I was pretty HYPO by that point. She

reduced my dosage to 1 pill a day which sent my body into a tailspin. I

started having problems with fibrocystic breast condition which my gyno

thinks was from the drastic reduction in tapazole. My new endo is better

than the other one, but she also encouraged me to have RAI. Why are doctors

so eager for patients to do this? Anyway, I asked her about diet and stress

reduction, as I had read the benefits of lifestyle changes, but she said

there was nothing I could do to improve the condition except take medication

or do RAI. I don't believe that and have started some lifestyle changes,

although I find the dietary changes very difficult to manage.

>I think I might be getting a little hyper again, but I have a doctor's

appointment in a week and will wait for the blood work. I have to say,

hyper is definetly better than hypo in my opinion!! I never want to feel

that bad again. Shaky hands and a fast heartbeat were much more manageable

than those debilitating muscle cramps. I am taking supplements. I'm

curious if anyone here takes copper and if so, how much? I haven't tried

that yet. Also, has anyone had a high alkaline phosphatase count in their

blood work? Mine was pretty high when I first went in, but at my last

appointment it had gone down quite a bit. Still not normal though. The

endo said we'll check it again next week and see if it's a problem.

>Well, thank you all for sharing your stories. I've learned so much, but I

know I still have more to learn. Some days I feel like this thing is

kicking me all over town, others I feel more in control. It's a comfort to

know that others are experiencing the same frustrations. Thank you all!

>Kristi

>

>

>

[Guest guest]

Hi Kristi,

Welcome to the group. Sounds like you are learning quite a bit. An elevated

alkaline phosphatase is fairly common in Graves' disease, and it should

return to normal once your levels are properly regulated. If you haven't been

prescribed beta blockers, you might ask about getting a prescription for

them. They're effective in reducing symptoms until your thyroid levels fall

back into the normal range. Propranolol also has the advantage of reducing

your conversion of T4 into T3.

I think RAI is so often recommended because it is the cheapest option and it

does generally eliminate problems of hyperthyroidism quickly. Insurance

companies, especially HMO groups, look favorably on doctors who limit

expenses. Also, years ago, most people weren't diagnosed until their symptoms

were very severe and it was once thought that the thyroid was at fault. So it

made sense to eliminate it. Even though the autoimmune nature of GD is now

known, many doctors were trained before this became widely known.

Another reason for the RAI push is that the drug companies, particularly

companies that make thyroid replacement hormone, play a major role in how

medicine is practiced in the United States. They sponsor most thyroid

organizations and they sponsor many educational conferences at top luxury

resorts. Some of these companies have created and perpetuated the notion that

hypothyroidism is easy to treat and a preferable condition. While efforts are

being made to eliminate the influence of drug companies on medicine, the

influences today still remain very strong. Take care, Elaine

[Guest guest]

Hi Kristi,

Welcome to the group. Sounds like you are learning quite a bit. An elevated

alkaline phosphatase is fairly common in Graves' disease, and it should

return to normal once your levels are properly regulated. If you haven't been

prescribed beta blockers, you might ask about getting a prescription for

them. They're effective in reducing symptoms until your thyroid levels fall

back into the normal range. Propranolol also has the advantage of reducing

your conversion of T4 into T3.

I think RAI is so often recommended because it is the cheapest option and it

does generally eliminate problems of hyperthyroidism quickly. Insurance

companies, especially HMO groups, look favorably on doctors who limit

expenses. Also, years ago, most people weren't diagnosed until their symptoms

were very severe and it was once thought that the thyroid was at fault. So it

made sense to eliminate it. Even though the autoimmune nature of GD is now

known, many doctors were trained before this became widely known.

Another reason for the RAI push is that the drug companies, particularly

companies that make thyroid replacement hormone, play a major role in how

medicine is practiced in the United States. They sponsor most thyroid

organizations and they sponsor many educational conferences at top luxury

resorts. Some of these companies have created and perpetuated the notion that

hypothyroidism is easy to treat and a preferable condition. While efforts are

being made to eliminate the influence of drug companies on medicine, the

influences today still remain very strong. Take care, Elaine

[Guest guest]

Hi Kristi,

Welcome to the group. Sounds like you are learning quite a bit. An elevated

alkaline phosphatase is fairly common in Graves' disease, and it should

return to normal once your levels are properly regulated. If you haven't been

prescribed beta blockers, you might ask about getting a prescription for

them. They're effective in reducing symptoms until your thyroid levels fall

back into the normal range. Propranolol also has the advantage of reducing

your conversion of T4 into T3.

I think RAI is so often recommended because it is the cheapest option and it

does generally eliminate problems of hyperthyroidism quickly. Insurance

companies, especially HMO groups, look favorably on doctors who limit

expenses. Also, years ago, most people weren't diagnosed until their symptoms

were very severe and it was once thought that the thyroid was at fault. So it

made sense to eliminate it. Even though the autoimmune nature of GD is now

known, many doctors were trained before this became widely known.

Another reason for the RAI push is that the drug companies, particularly

companies that make thyroid replacement hormone, play a major role in how

medicine is practiced in the United States. They sponsor most thyroid

organizations and they sponsor many educational conferences at top luxury

resorts. Some of these companies have created and perpetuated the notion that

hypothyroidism is easy to treat and a preferable condition. While efforts are

being made to eliminate the influence of drug companies on medicine, the

influences today still remain very strong. Take care, Elaine

[Guest guest]

Good luck Kristi! I think you'll find the sailing a bit smoother now that

you have some basic facts. I have to make a confession: I seem to be on

near constant brain fog, I think because of the demands (that I'm most

grateful to have) made on me, not anything biological. So there's a lot

of learned discussion that goes on here that I don't make an effort to

fully follow but that I do save in a thyroid folder.

But it seems to me that one of the most basic, egregious errors, whether

of commission or omission, that endos seem to make is improper dosing and

monitoring. Am I right? Does anyone know of studies that back this up,

that speculate what true remission rates might be under optimal

circumstances, or in other countries? That is something that I think

should be in all of our files (or stapled into " The Book " if it's not

discussed there already. My apologies, Elaine, if it is.)

Take care and a great weekend to all, Fay

________________________________________________________________

GET INTERNET ACCESS FROM JUNO!

Juno offers FREE or PREMIUM Internet access for less!

Join Juno today! For your FREE software, visit:

http://dl.www.juno.com/get/web/.

[Guest guest]

Good luck Kristi! I think you'll find the sailing a bit smoother now that

you have some basic facts. I have to make a confession: I seem to be on

near constant brain fog, I think because of the demands (that I'm most

grateful to have) made on me, not anything biological. So there's a lot

of learned discussion that goes on here that I don't make an effort to

fully follow but that I do save in a thyroid folder.

But it seems to me that one of the most basic, egregious errors, whether

of commission or omission, that endos seem to make is improper dosing and

monitoring. Am I right? Does anyone know of studies that back this up,

that speculate what true remission rates might be under optimal

circumstances, or in other countries? That is something that I think

should be in all of our files (or stapled into " The Book " if it's not

discussed there already. My apologies, Elaine, if it is.)

Take care and a great weekend to all, Fay

________________________________________________________________

GET INTERNET ACCESS FROM JUNO!

Juno offers FREE or PREMIUM Internet access for less!

Join Juno today! For your FREE software, visit:

http://dl.www.juno.com/get/web/.

[Guest guest]

First, welcome to the new people. This group sure is growing, and that's a

good thing. The broader base of experiences we have to draw on for

knowledge, the better. When you can join, and find people who've been

through whatever it is you're going through, it's such a comfort. And help

with planning future actions.

As for the comment below, I have heard it ad nauseum from my endo. But even

this I question after reading posts from all the rai-induced hypo folks

here--seems to me, that not only dosage changes as the thyroid slowly dies,

but getting the right combination of replacement hormone for one's body is

much more difficult than taking one of the two basic ATD's and learning to

pay attention to your body and your labs.

Terry

>

> Reply-To: graves_support

> Date: Fri, 12 Apr 2002 13:01:02 -0500

> To: <graves_support >

> Subject: Re: New here

>

> Doctors like to recommend

> RAI because it's _easier_ for the doctor to manage. Not all this labwork and

> adjusting medications like you have to do with ATDs.

[Guest guest]

First, welcome to the new people. This group sure is growing, and that's a

good thing. The broader base of experiences we have to draw on for

knowledge, the better. When you can join, and find people who've been

through whatever it is you're going through, it's such a comfort. And help

with planning future actions.

As for the comment below, I have heard it ad nauseum from my endo. But even

this I question after reading posts from all the rai-induced hypo folks

here--seems to me, that not only dosage changes as the thyroid slowly dies,

but getting the right combination of replacement hormone for one's body is

much more difficult than taking one of the two basic ATD's and learning to

pay attention to your body and your labs.

Terry

>

> Reply-To: graves_support

> Date: Fri, 12 Apr 2002 13:01:02 -0500

> To: <graves_support >

> Subject: Re: New here

>

> Doctors like to recommend

> RAI because it's _easier_ for the doctor to manage. Not all this labwork and

> adjusting medications like you have to do with ATDs.

[Guest guest]

First, welcome to the new people. This group sure is growing, and that's a

good thing. The broader base of experiences we have to draw on for

knowledge, the better. When you can join, and find people who've been

through whatever it is you're going through, it's such a comfort. And help

with planning future actions.

As for the comment below, I have heard it ad nauseum from my endo. But even

this I question after reading posts from all the rai-induced hypo folks

here--seems to me, that not only dosage changes as the thyroid slowly dies,

but getting the right combination of replacement hormone for one's body is

much more difficult than taking one of the two basic ATD's and learning to

pay attention to your body and your labs.

Terry

>

> Reply-To: graves_support

> Date: Fri, 12 Apr 2002 13:01:02 -0500

> To: <graves_support >

> Subject: Re: New here

>

> Doctors like to recommend

> RAI because it's _easier_ for the doctor to manage. Not all this labwork and

> adjusting medications like you have to do with ATDs.

[Guest guest]

Oh, good question Fay!!! I'm interested in this too....what are TRUE

remission rates by doctors that did proper dosing and monitoring and withdrew

the medication SLOWLY!

Doris

[Guest guest]

Kristi:

I was in a similar situation to yours, as well: I was diagnosed when my

second child was eight months old and my oldest two 1/2 yrs.

Skim early posts by me for my story, but in a nutshell -- I went into

remission by using nutritional supplements and alternative medicine AND by

weaning my baby (the latter was very important, I think).

Above all, move slowly and first do everything you can to let your body get

back to its pre-pregnancy hormonal state on its own. For some of us, that

has been enough.

Best,

B

New here

>

>

> >Hi Everybody,

> >Well, I can't begin to tell you all what a help it has been to read your

> posts. I was diagnosed with Graves in December. My family doctor

referred

> me to an endo that I now realize is a quack. He insisted that I needed

RAI

> and I actually scheduled the appointment. Then I went home and read

> everything I could about it, mostly because I have two small children,

ages

> 3 and 1, and I was worried about the precautions he gave me. I decided

not

> to do the RAI and asked him to start me on ATDs. He put me on 40 mg of

> tapazole a day. He had me come in after about 3 weeks and my hands were

> shaking a little bit so he increased the dosage to 2 pills every 8 hours.

> (without a blood test or anything) Not long afterwards I started having

> horrible muscle pains. It got so bad I finally went to the emergency room

> one night. The ER doctor gave me muscle relaxers and sent me home, making

> me feel like a complete hypochondriac. I went back to my endo and he said

> that I should see a neurologist and that I should have the RAI since I

> seemed to be " having trouble " with the ATDs. He obviously thought it was

> all in my head. ANYWAY, to make a long story a little less long, I

finally

> decided to look for another endo. By this time I was about 15 pounds

> heavier than I'd been when I started the medication. She did the blood

work

> and (as most of you might guess), I was pretty HYPO by that point. She

> reduced my dosage to 1 pill a day which sent my body into a tailspin. I

> started having problems with fibrocystic breast condition which my gyno

> thinks was from the drastic reduction in tapazole. My new endo is

better

> than the other one, but she also encouraged me to have RAI. Why are

doctors

> so eager for patients to do this? Anyway, I asked her about diet and

stress

> reduction, as I had read the benefits of lifestyle changes, but she said

> there was nothing I could do to improve the condition except take

medication

> or do RAI. I don't believe that and have started some lifestyle changes,

> although I find the dietary changes very difficult to manage.

> >I think I might be getting a little hyper again, but I have a doctor's

> appointment in a week and will wait for the blood work. I have to say,

> hyper is definetly better than hypo in my opinion!! I never want to feel

> that bad again. Shaky hands and a fast heartbeat were much more

manageable

> than those debilitating muscle cramps. I am taking supplements. I'm

> curious if anyone here takes copper and if so, how much? I haven't tried

> that yet. Also, has anyone had a high alkaline phosphatase count in their

> blood work? Mine was pretty high when I first went in, but at my last

> appointment it had gone down quite a bit. Still not normal though. The

> endo said we'll check it again next week and see if it's a problem.

> >Well, thank you all for sharing your stories. I've learned so much, but

I

> know I still have more to learn. Some days I feel like this thing is

> kicking me all over town, others I feel more in control. It's a comfort

to

> know that others are experiencing the same frustrations. Thank you all!

> >Kristi

> >

> >

> >

[Guest guest]

Kristi:

I was in a similar situation to yours, as well: I was diagnosed when my

second child was eight months old and my oldest two 1/2 yrs.

Skim early posts by me for my story, but in a nutshell -- I went into

remission by using nutritional supplements and alternative medicine AND by

weaning my baby (the latter was very important, I think).

Above all, move slowly and first do everything you can to let your body get

back to its pre-pregnancy hormonal state on its own. For some of us, that

has been enough.

Best,

B

New here

>

>

> >Hi Everybody,

> >Well, I can't begin to tell you all what a help it has been to read your

> posts. I was diagnosed with Graves in December. My family doctor

referred

> me to an endo that I now realize is a quack. He insisted that I needed

RAI

> and I actually scheduled the appointment. Then I went home and read

> everything I could about it, mostly because I have two small children,

ages

> 3 and 1, and I was worried about the precautions he gave me. I decided

not

> to do the RAI and asked him to start me on ATDs. He put me on 40 mg of

> tapazole a day. He had me come in after about 3 weeks and my hands were

> shaking a little bit so he increased the dosage to 2 pills every 8 hours.

> (without a blood test or anything) Not long afterwards I started having

> horrible muscle pains. It got so bad I finally went to the emergency room

> one night. The ER doctor gave me muscle relaxers and sent me home, making

> me feel like a complete hypochondriac. I went back to my endo and he said

> that I should see a neurologist and that I should have the RAI since I

> seemed to be " having trouble " with the ATDs. He obviously thought it was

> all in my head. ANYWAY, to make a long story a little less long, I

finally

> decided to look for another endo. By this time I was about 15 pounds

> heavier than I'd been when I started the medication. She did the blood

work

> and (as most of you might guess), I was pretty HYPO by that point. She

> reduced my dosage to 1 pill a day which sent my body into a tailspin. I

> started having problems with fibrocystic breast condition which my gyno

> thinks was from the drastic reduction in tapazole. My new endo is

better

> than the other one, but she also encouraged me to have RAI. Why are

doctors

> so eager for patients to do this? Anyway, I asked her about diet and

stress

> reduction, as I had read the benefits of lifestyle changes, but she said

> there was nothing I could do to improve the condition except take

medication

> or do RAI. I don't believe that and have started some lifestyle changes,

> although I find the dietary changes very difficult to manage.

> >I think I might be getting a little hyper again, but I have a doctor's

> appointment in a week and will wait for the blood work. I have to say,

> hyper is definetly better than hypo in my opinion!! I never want to feel

> that bad again. Shaky hands and a fast heartbeat were much more

manageable

> than those debilitating muscle cramps. I am taking supplements. I'm

> curious if anyone here takes copper and if so, how much? I haven't tried

> that yet. Also, has anyone had a high alkaline phosphatase count in their

> blood work? Mine was pretty high when I first went in, but at my last

> appointment it had gone down quite a bit. Still not normal though. The

> endo said we'll check it again next week and see if it's a problem.

> >Well, thank you all for sharing your stories. I've learned so much, but

I

> know I still have more to learn. Some days I feel like this thing is

> kicking me all over town, others I feel more in control. It's a comfort

to

> know that others are experiencing the same frustrations. Thank you all!

> >Kristi

> >

> >

> >

[Guest guest]

Hi Kristi-

Elaine is right, even though most trained doctors now know Graves' is an

autoimmune disease, they were taught that RAI is a perfectly acceptable

option in medical school. Unfortunately, they haven't yet found effective

ways to treat autoimmune diseases. That probably factors in too why they

are so quick to recommend something that they believe is noninvasive and

that permanently and quickly takes care of the worst risks of Graves'.

Take care,

> Hi Kristi,

> Welcome to the group. Sounds like you are learning quite a bit. An

elevated

> alkaline phosphatase is fairly common in Graves' disease, and it should

> return to normal once your levels are properly regulated. If you haven't

been

> prescribed beta blockers, you might ask about getting a prescription for

> them. They're effective in reducing symptoms until your thyroid levels

fall

> back into the normal range. Propranolol also has the advantage of reducing

> your conversion of T4 into T3.

> I think RAI is so often recommended because it is the cheapest option and

it

> does generally eliminate problems of hyperthyroidism quickly. Insurance

> companies, especially HMO groups, look favorably on doctors who limit

> expenses. Also, years ago, most people weren't diagnosed until their

symptoms

> were very severe and it was once thought that the thyroid was at fault. So

it

> made sense to eliminate it. Even though the autoimmune nature of GD is now

> known, many doctors were trained before this became widely known.

>

> Another reason for the RAI push is that the drug companies, particularly

> companies that make thyroid replacement hormone, play a major role in how

> medicine is practiced in the United States. They sponsor most thyroid

> organizations and they sponsor many educational conferences at top luxury

> resorts. Some of these companies have created and perpetuated the notion

that

> hypothyroidism is easy to treat and a preferable condition. While efforts

are

> being made to eliminate the influence of drug companies on medicine, the

> influences today still remain very strong. Take care, Elaine

[Guest guest]

Hi Kristi-

Elaine is right, even though most trained doctors now know Graves' is an

autoimmune disease, they were taught that RAI is a perfectly acceptable

option in medical school. Unfortunately, they haven't yet found effective

ways to treat autoimmune diseases. That probably factors in too why they

are so quick to recommend something that they believe is noninvasive and

that permanently and quickly takes care of the worst risks of Graves'.

Take care,

> Hi Kristi,

> Welcome to the group. Sounds like you are learning quite a bit. An

elevated

> alkaline phosphatase is fairly common in Graves' disease, and it should

> return to normal once your levels are properly regulated. If you haven't

been

> prescribed beta blockers, you might ask about getting a prescription for

> them. They're effective in reducing symptoms until your thyroid levels

fall

> back into the normal range. Propranolol also has the advantage of reducing

> your conversion of T4 into T3.

> I think RAI is so often recommended because it is the cheapest option and

it

> does generally eliminate problems of hyperthyroidism quickly. Insurance

> companies, especially HMO groups, look favorably on doctors who limit

> expenses. Also, years ago, most people weren't diagnosed until their

symptoms

> were very severe and it was once thought that the thyroid was at fault. So

it

> made sense to eliminate it. Even though the autoimmune nature of GD is now

> known, many doctors were trained before this became widely known.

>

> Another reason for the RAI push is that the drug companies, particularly

> companies that make thyroid replacement hormone, play a major role in how

> medicine is practiced in the United States. They sponsor most thyroid

> organizations and they sponsor many educational conferences at top luxury

> resorts. Some of these companies have created and perpetuated the notion

that

> hypothyroidism is easy to treat and a preferable condition. While efforts

are

> being made to eliminate the influence of drug companies on medicine, the

> influences today still remain very strong. Take care, Elaine

[Guest guest]

Hi Kristi-

Elaine is right, even though most trained doctors now know Graves' is an

autoimmune disease, they were taught that RAI is a perfectly acceptable

option in medical school. Unfortunately, they haven't yet found effective

ways to treat autoimmune diseases. That probably factors in too why they

are so quick to recommend something that they believe is noninvasive and

that permanently and quickly takes care of the worst risks of Graves'.

Take care,

> Hi Kristi,

> Welcome to the group. Sounds like you are learning quite a bit. An

elevated

> alkaline phosphatase is fairly common in Graves' disease, and it should

> return to normal once your levels are properly regulated. If you haven't

been

> prescribed beta blockers, you might ask about getting a prescription for

> them. They're effective in reducing symptoms until your thyroid levels

fall

> back into the normal range. Propranolol also has the advantage of reducing

> your conversion of T4 into T3.

> I think RAI is so often recommended because it is the cheapest option and

it

> does generally eliminate problems of hyperthyroidism quickly. Insurance

> companies, especially HMO groups, look favorably on doctors who limit

> expenses. Also, years ago, most people weren't diagnosed until their

symptoms

> were very severe and it was once thought that the thyroid was at fault. So

it

> made sense to eliminate it. Even though the autoimmune nature of GD is now

> known, many doctors were trained before this became widely known.

>

> Another reason for the RAI push is that the drug companies, particularly

> companies that make thyroid replacement hormone, play a major role in how

> medicine is practiced in the United States. They sponsor most thyroid

> organizations and they sponsor many educational conferences at top luxury

> resorts. Some of these companies have created and perpetuated the notion

that

> hypothyroidism is easy to treat and a preferable condition. While efforts

are

> being made to eliminate the influence of drug companies on medicine, the

> influences today still remain very strong. Take care, Elaine