Re: Re: Daughter with Hyperthyroid

March 23, 2006

,

Yes, some people can function with just one lobe of their thyroid gland. From

what I understand anyway. I still have all of mine. I think some people may

need replacement meds till the remaining half of the thyroid takes over.

Sometimes the half being removed may have a nodule or be enlarged...either could

have been producing the majority of thyroid hormone. So after surgery there

might me a significant drop per se. I think replacement meds would be temporary

in that case. Can't say for sure as I have not been there personally.

Don't be rushed. I don't see why she can't start on the ATDs and see how that

works. And yes remission is possible with meds. Remission is not possible

after RAI or surgery For some reason, RAI is the main the course of action to

treat hypers in the USA. But overseas they mostly treat with ATDs and herbs are

more openly used. I find that very interesting.

I recommend you check out the thyroid disorders group on mediboard.com. There

are people there from all around the world. So they may be able to help you

with the drs and insurance and travel questions.

Alot of hyper symptoms are mild enough that they don't really raise a red flag.

I was diagnosed due to abnormal labs in Nov 05. After looking at symptoms

lists...I have had most symptoms listed on hyper and hypo lists off and on since

childhood. So yes it is highly possible to live with symptoms and go

undiagnosed for years. I have fought fatigue and complained about it to my drs

for nearly 20 years now. Finally since starting to treat my hyperT this is

getting better. That tells me is was thyroid related all along.

You can't always feel a nodule. Some may never get that big. And sometimes

they shrink and/or disappear. And it is very slim chance that it would be

cancerous. Cancerous nodules grow. I have a nodule. My dr and I have decided

to monitor my nodule with sonograms. If it shows growth then we will talk about

having a biopsy done to test for cancer. If it ever comes back positive for

cancer or my thyroid (with goiter or nodule) becomes obstructive in size

(restricting swallowing or breathing) then I will have it removed.

Keep in mind some nodules never bother anyone. She may just have mild hyperT

that can be controlled with dietary changes (avoiding iodine and calcium rich

foods to start). In the past year my sister had an xray done looking for a

reason for abdominal pain. Her dr referred her to an internal med dr. He just

about laughed. He said the other dr mentioned spots on her liver in the dr

referral notes. He showed us the xray. And yep there were these spots all

over the liver in the pic. Dr said that these were actually tumors and everyone

has them everywhere in their bodies. Most tumors are harmless. It is when they

develop in an abnormal shape or start to grow abnormally that you need to be

concerned. He told my sis not to worry. My mother was told in January that she

had cysts on her kidneys. That dr said basically the same thing. Lets wait and

watch....these things are harmless and sometimes even go away on their own. So

when my dr said the same thing about my thyroid nodule it didn't worry me.

The main thing to worry about is the heart symptoms. These can be bad for

obvious reasons. As long as she is being monitored she should be ok. If heart

problems start they can put her on a beta blocker to protect her heart from

damage. There is risk of thyroid storm. But then I recently met someone that

had a storm while in normal thyroid lab range. So I think if that's going to

happen its going to happen. Although it is supposed to be more of a risk with

higher thyroid levels. I am 38 and do not have any of the heart symptoms.

(That I know of anyway. And I am being monitored by a dr.)

You might see what this ENT dr has to say and check out the NZ dr he knows.

Hope that helps some,

Kim

aka Hyperkim

PS. On rare thing...I did meet one girl, can't remember where though. She said

she was a wierd one in that her " normal " just happened to be above the " normal "

lab ranges. For years drs messed with her trying to get her down in the normal

range and to her point of least symptoms. Her point of least symptoms turned

out to be above the " normal " ranges. She was not really suffering from

hyperthyroidism. This was her normal. You daughter may be close to her normal

if she doesn't have many symptoms. Just a thought. Don't fire all the drs yeat

though.

Re: Daughter with Hyperthyroid

Kim,

Thanks! The endo didn't say the whole thryoid would be affected with

RAI. Another thing to consiser then because she was under the

impression it would just be the nodule. Sounds like the RAI is the

last resort for her. He did say with surgery they only took the 1/2

of the thyroid out and then the other 1/2 would take over and

compensate. Is this correct? Also with surgery, they would know for

sure if there was any cancer. Would she need any meds if 1/2 of the

thyroid is taken out? I still like the idea of ATD to try at first to

buy some time(1-2 yrs). Feels like we are being pushed into making a

rushed decision. The whole problem is that she plans leaving for New

Zealand for teacher's college for a yr. If we could get someone to

monitor the ATD over there, then that might buy us some more time to

decide surgery later if the meds didn't resolve it. He never said

anything about going into remission. Is this possible with

medication? We see the ENT surgeon tomorrow. He was the first dr we

were referred to after the ultra sound. He did say that he studied in

NZ and knew of a good thyroid dr. We are hoping he can send her to

him. I'm not sure what this entails getting medical

treatment/monitoring in a different country. Anybody know? We live in

Ontario, Canada and are under provincial medical insurance coverage.

How long can someone live with hyper and it go unnoticed. Wondering

how long it takes for a nodule to grow where the notice it. Could she

have been living with hyper for yrs before? She doesn't have that

many symptoms. They keep asking her and she says no to most. How long

can someone go on with hyper before it really gets serious?

>

> ,

>

> First the RAI does go to the whole thyroid. So the whole thyroid

is

> effected not just a nodule.

>

> In rare cases (I think less than 1%) " hot " nodules can be

cancerous. I have

> a nodule and am hyperthyroid. I also have the TSI anitbody

causing graves

> diesease which can also cause hyperthyroidism. So its a toss up

on which is

> the real culprit in making me hyper. My dr and I have chosen to

keep an eye

> on the nodule with sonograms. Cancerous nodules grow. If mine

shows growth

> then we'll do something about it at that time. (My dr has had

multiple

> nodules herself - most of them have shrunk on their own.) For now

we are treating

> the hyperthyroid with vitiamins and such. The jury is still out

on how that

> will work for me. At last labs my levels had come down a bit but

were still

> on the high side. I had labs drawn again yesterday, so we'll see.

>

> On the weight issue...In 10-20% of hyperthyroidism there can be

weight gain

> instead of weight loss. I am one of those lucky few. WooHoo! I

read

> somewhere that this is because we are able to keep up with the

increased hunger.

> Although we should be really large for the amount of food we eat

our increased

> metabolism does still burn off alot of the excess. Make sense?

>

> I recommend you and/or your daughter check out the thyroid group

on

> Mediboard.com. It has hyperthyroid members that have been very

successfull with the

> ATD treatment route. They do not mind helping you monitor your

dosing by

> what has worked for them(personal experience). The true risk with

ATDs is

> finding a dr that truly " knows " how to dose ATDs. Any dr can

write the

> prescription. Get my point?

>

> I personally know several people that have been on ATD's for

several years.

> One has been on them for 25 years. And without the horrible side

effects.

> Again I think the trick is finding a dr that " know " how to use

ATD's and how

> to properly monitor patients taking ATD's.

>

> Hope that helps some. Best wishes,

> Kim

> aka Hyperkim

>

March 24, 2006

Amy,

Thank you for this information. I'll look up that group also. I am trying to

weigh out all options. We went to the ENT surgeon today and discussed all these

options. When we were first in there before seeing him the nurse came in and

talked as if we basically had chosen RAI and it was such an easy fast route to

take. Sort of put me off as an easy quick fix. After speaking with the ENT and

asking what seemed like a 100 questions, we did say we felt like we were being

rushed into making a decision. We asked if it was possible that a major decision

like surgery or RAI could be postponed a yr until she got back from New Zealand.

If it were him, would he delay it. He felt it could be delayed. He did say that

ATD's may not respond to nodule type hyperthryoid as well as Graves. I asked

about her TSH level and he said it wasn't that high. I asked how long could she

have been sitting here with hyperT and he said could have been yrs. He did say

you have to be careful with her heart. I'm hoping we can monitor this for

another yr, she gets her teacher's degree and then if surgery is necessary, do

that then. Scares the crap out of me that if you take RAI you have to avoid

close contact with people for a week and not go near small children. What are

the cancer risks with RAI later in life. Sorry, I am a naturalist and don't even

like dental x-rays. I just had a friend tell me her BIL did the RAI for thyroid

and he did not do well after. His symptoms got bad and ended up commiting

suicide. Maybe it had nothing to do with it, but, makes you wonder. We go back

to the endo again on April 5th to discuss this thing again and see if this can

be helped with medication, even if it's only for a year. Off to do more

research. I'd be happy to hear from any more on this list about RAI good or bad.

RAI wasn't at the top of the surgeon's list. Makes me wonder.

~ ~

All kids are gifted; some just open their

packages earlier than others.

Re: Daughter with Hyperthyroid

>

> Kim,

> Thanks! The endo didn't say the whole thryoid would be affected

with

> RAI. Another thing to consiser then because she was under the

> impression it would just be the nodule. Sounds like the RAI is the

> last resort for her. He did say with surgery they only took the

1/2

> of the thyroid out and then the other 1/2 would take over and

> compensate. Is this correct? Also with surgery, they would know

for

> sure if there was any cancer. Would she need any meds if 1/2 of

the

> thyroid is taken out? I still like the idea of ATD to try at first

to

> buy some time(1-2 yrs). Feels like we are being pushed into making

a

> rushed decision. The whole problem is that she plans leaving for

New

> Zealand for teacher's college for a yr. If we could get someone to

> monitor the ATD over there, then that might buy us some more time

to

> decide surgery later if the meds didn't resolve it. He never said

> anything about going into remission. Is this possible with

> medication? We see the ENT surgeon tomorrow. He was the first dr

we

> were referred to after the ultra sound. He did say that he studied

in

> NZ and knew of a good thyroid dr. We are hoping he can send her to

> him. I'm not sure what this entails getting medical

> treatment/monitoring in a different country. Anybody know? We live

in

> Ontario, Canada and are under provincial medical insurance

coverage.

> How long can someone live with hyper and it go unnoticed.

Wondering

> how long it takes for a nodule to grow where the notice it. Could

she

> have been living with hyper for yrs before? She doesn't have that

> many symptoms. They keep asking her and she says no to most. How

long

> can someone go on with hyper before it really gets serious?

>

> >

> > ,

> >

> > First the RAI does go to the whole thyroid. So the whole

thyroid

> is

> > effected not just a nodule.

> >

> > In rare cases (I think less than 1%) " hot " nodules can be

> cancerous. I have

> > a nodule and am hyperthyroid. I also have the TSI anitbody

> causing graves

> > diesease which can also cause hyperthyroidism. So its a toss up

> on which is

> > the real culprit in making me hyper. My dr and I have chosen

to

> keep an eye

> > on the nodule with sonograms. Cancerous nodules grow. If mine

> shows growth

> > then we'll do something about it at that time. (My dr has had

> multiple

> > nodules herself - most of them have shrunk on their own.) For

now

> we are treating

> > the hyperthyroid with vitiamins and such. The jury is still

out

> on how that

> > will work for me. At last labs my levels had come down a bit

but

> were still

> > on the high side. I had labs drawn again yesterday, so we'll

see.

> >

> > On the weight issue...In 10-20% of hyperthyroidism there can be

> weight gain

> > instead of weight loss. I am one of those lucky few. WooHoo!

I

> read

> > somewhere that this is because we are able to keep up with the

> increased hunger.

> > Although we should be really large for the amount of food we

eat

> our increased

> > metabolism does still burn off alot of the excess. Make

sense?

> >

> > I recommend you and/or your daughter check out the thyroid group

> on

> > Mediboard.com. It has hyperthyroid members that have been very

> successfull with the

> > ATD treatment route. They do not mind helping you monitor your

> dosing by

> > what has worked for them(personal experience). The true risk

with

> ATDs is

> > finding a dr that truly " knows " how to dose ATDs. Any dr can

> write the

> > prescription. Get my point?

> >

> > I personally know several people that have been on ATD's for

> several years.

> > One has been on them for 25 years. And without the horrible

side

> effects.

> > Again I think the trick is finding a dr that " know " how to use

> ATD's and how

> > to properly monitor patients taking ATD's.

> >

> > Hope that helps some. Best wishes,

> > Kim

> > aka Hyperkim

> >

March 24, 2006

Hi

First of all, I have to tell you with a big smile, surgeons LIKE to operate. It

will always be their first choice....I've learned this the hard way...

In my research I did come upon a few references that suggest that you are

possibly more prone to cancer in later years if you take RAI.

If your thyroid meds are off balance, and it is a very fine balance, sometimes,

you can become depressed. That is one reason for keeping a close eye on your

TSH. For the first year your daughter may have blood tests every 4 to 6 weeks.

This is no matter which option she takes.

There are beta blockers that will protect her heart. Usually here in Canada the

doctors offer 'Inderin' or 'Propranalol'. These beta blockers help reduce the

symptoms of hyperthyroid somewhat. Do tell her if she does take beta blockers

that she should not just suddenly stop them. Rather she should taper them off,

gently. Also beta blockers can contribute to depression. Being faced with a

life long disease can trigger depression...just keep an eye out.

K

Re: Daughter with Hyperthyroid

>

> Kim,

> Thanks! The endo didn't say the whole thryoid would be affected

with

> RAI. Another thing to consiser then because she was under the

> impression it would just be the nodule. Sounds like the RAI is the

> last resort for her. He did say with surgery they only took the

1/2

> of the thyroid out and then the other 1/2 would take over and

> compensate. Is this correct? Also with surgery, they would know

for

> sure if there was any cancer. Would she need any meds if 1/2 of

the

> thyroid is taken out? I still like the idea of ATD to try at first

to

> buy some time(1-2 yrs). Feels like we are being pushed into making

a

> rushed decision. The whole problem is that she plans leaving for

New

> Zealand for teacher's college for a yr. If we could get someone to

> monitor the ATD over there, then that might buy us some more time

to

> decide surgery later if the meds didn't resolve it. He never said

> anything about going into remission. Is this possible with

> medication? We see the ENT surgeon tomorrow. He was the first dr

we

> were referred to after the ultra sound. He did say that he studied

in

> NZ and knew of a good thyroid dr. We are hoping he can send her to

> him. I'm not sure what this entails getting medical

> treatment/monitoring in a different country. Anybody know? We live

in

> Ontario, Canada and are under provincial medical insurance

coverage.

> How long can someone live with hyper and it go unnoticed.

Wondering

> how long it takes for a nodule to grow where the notice it. Could

she

> have been living with hyper for yrs before? She doesn't have that

> many symptoms. They keep asking her and she says no to most. How

long

> can someone go on with hyper before it really gets serious?

>

> >

> > ,

> >

> > First the RAI does go to the whole thyroid. So the whole

thyroid

> is

> > effected not just a nodule.

> >

> > In rare cases (I think less than 1%) " hot " nodules can be

> cancerous. I have

> > a nodule and am hyperthyroid. I also have the TSI anitbody

> causing graves

> > diesease which can also cause hyperthyroidism. So its a toss up

> on which is

> > the real culprit in making me hyper. My dr and I have chosen

to

> keep an eye

> > on the nodule with sonograms. Cancerous nodules grow. If mine

> shows growth

> > then we'll do something about it at that time. (My dr has had

> multiple

> > nodules herself - most of them have shrunk on their own.) For

now

> we are treating

> > the hyperthyroid with vitiamins and such. The jury is still

out

> on how that

> > will work for me. At last labs my levels had come down a bit

but

> were still

> > on the high side. I had labs drawn again yesterday, so we'll

see.

> >

> > On the weight issue...In 10-20% of hyperthyroidism there can be

> weight gain

> > instead of weight loss. I am one of those lucky few. WooHoo!

I

> read

> > somewhere that this is because we are able to keep up with the

> increased hunger.

> > Although we should be really large for the amount of food we

eat

> our increased

> > metabolism does still burn off alot of the excess. Make

sense?

> >

> > I recommend you and/or your daughter check out the thyroid group

> on

> > Mediboard.com. It has hyperthyroid members that have been very

> successfull with the

> > ATD treatment route. They do not mind helping you monitor your

> dosing by

> > what has worked for them(personal experience). The true risk

with

> ATDs is

> > finding a dr that truly " knows " how to dose ATDs. Any dr can

> write the

> > prescription. Get my point?

> >

> > I personally know several people that have been on ATD's for

> several years.

> > One has been on them for 25 years. And without the horrible

side

> effects.

> > Again I think the trick is finding a dr that " know " how to use

> ATD's and how

> > to properly monitor patients taking ATD's.

> >

> > Hope that helps some. Best wishes,

> > Kim

> > aka Hyperkim

> >

March 24, 2006

Hi Aimee,

I'm glad to hear you're doing well. But I wanted to point out that

levothyroxine and anti-thyroid drugs are both synthetic compounds. Neither is

natural although both thyroxine and the sulfur molecules found in ATDs are

naturally-occurring. Also, there is only one reported fatality from ATDs in the

literature and it was due to an unusually high dose. ATDs cause toxic effects in

less than 1% of patients taking them and most are due to inappropriately high

doses.

There have been more than 100 fatalities related to RAI caused by thyroid storm,

several within the last few months alone, which can occur during the first 8

weeks after RAI.

Having had RAI, I can assure you that most long-term effects do not show up

until 5-6 years after hypothyroidism develops. RAI profoundly stimulates the

immune system, making the original autoimmune condition worse. Several years

after RAI, thyroid eye disease and other autoimmune diseases and manifestations

of hypothyroidism such as fibromyalgia and osteoarthritis are more likely to

occur.

It is very misleading to evaluate treatment response after 2 months. Your gland

continues to die over a period of one year and antibody production is increased

for at least 10 years. Hypothyroidism is a serious disease that causes a number

of complications even when levels are corrected. We do not utilize synthetic

hormone the way we use our own hormone. Also levothyroxine only represents a

fraction of the various hormones that our thyroid glands produce. Best, Elaine

Visit my new Autoimmune Disease Topic at http://autoimmunedisease.suite101.com

Re: Daughter with Hyperthyroid

>

> Kim,

> Thanks! The endo didn't say the whole thryoid would be affected

with

> RAI. Another thing to consiser then because she was under the

> impression it would just be the nodule. Sounds like the RAI is the

> last resort for her. He did say with surgery they only took the

1/2

> of the thyroid out and then the other 1/2 would take over and

> compensate. Is this correct? Also with surgery, they would know

for

> sure if there was any cancer. Would she need any meds if 1/2 of

the

> thyroid is taken out? I still like the idea of ATD to try at first

to

> buy some time(1-2 yrs). Feels like we are being pushed into making

a

> rushed decision. The whole problem is that she plans leaving for

New

> Zealand for teacher's college for a yr. If we could get someone to

> monitor the ATD over there, then that might buy us some more time

to

> decide surgery later if the meds didn't resolve it. He never said

> anything about going into remission. Is this possible with

> medication? We see the ENT surgeon tomorrow. He was the first dr

we

> were referred to after the ultra sound. He did say that he studied

in

> NZ and knew of a good thyroid dr. We are hoping he can send her to

> him. I'm not sure what this entails getting medical

> treatment/monitoring in a different country. Anybody know? We live

in

> Ontario, Canada and are under provincial medical insurance

coverage.

> How long can someone live with hyper and it go unnoticed.

Wondering

> how long it takes for a nodule to grow where the notice it. Could

she

> have been living with hyper for yrs before? She doesn't have that

> many symptoms. They keep asking her and she says no to most. How

long

> can someone go on with hyper before it really gets serious?

>

> >

> > ,

> >

> > First the RAI does go to the whole thyroid. So the whole

thyroid

> is

> > effected not just a nodule.

> >

> > In rare cases (I think less than 1%) " hot " nodules can be

> cancerous. I have

> > a nodule and am hyperthyroid. I also have the TSI anitbody

> causing graves

> > diesease which can also cause hyperthyroidism. So its a toss up

> on which is

> > the real culprit in making me hyper. My dr and I have chosen

to

> keep an eye

> > on the nodule with sonograms. Cancerous nodules grow. If mine

> shows growth

> > then we'll do something about it at that time. (My dr has had

> multiple

> > nodules herself - most of them have shrunk on their own.) For

now

> we are treating

> > the hyperthyroid with vitiamins and such. The jury is still

out

> on how that

> > will work for me. At last labs my levels had come down a bit

but

> were still

> > on the high side. I had labs drawn again yesterday, so we'll

see.

> >

> > On the weight issue...In 10-20% of hyperthyroidism there can be

> weight gain

> > instead of weight loss. I am one of those lucky few. WooHoo!

I

> read

> > somewhere that this is because we are able to keep up with the

> increased hunger.

> > Although we should be really large for the amount of food we

eat

> our increased

> > metabolism does still burn off alot of the excess. Make

sense?

> >

> > I recommend you and/or your daughter check out the thyroid group

> on

> > Mediboard.com. It has hyperthyroid members that have been very

> successfull with the

> > ATD treatment route. They do not mind helping you monitor your

> dosing by

> > what has worked for them(personal experience). The true risk

with

> ATDs is

> > finding a dr that truly " knows " how to dose ATDs. Any dr can

> write the

> > prescription. Get my point?

> >

> > I personally know several people that have been on ATD's for

> several years.

> > One has been on them for 25 years. And without the horrible

side

> effects.

> > Again I think the trick is finding a dr that " know " how to use

> ATD's and how

> > to properly monitor patients taking ATD's.

> >

> > Hope that helps some. Best wishes,

> > Kim

> > aka Hyperkim

> >

March 24, 2006

Well put!

K

Re: Daughter with Hyperthyroid

>

> Kim,

> Thanks! The endo didn't say the whole thryoid would be affected

with

> RAI. Another thing to consiser then because she was under the

> impression it would just be the nodule. Sounds like the RAI is the

> last resort for her. He did say with surgery they only took the

1/2

> of the thyroid out and then the other 1/2 would take over and

> compensate. Is this correct? Also with surgery, they would know

for

> sure if there was any cancer. Would she need any meds if 1/2 of

the

> thyroid is taken out? I still like the idea of ATD to try at first

to

> buy some time(1-2 yrs). Feels like we are being pushed into making

a

> rushed decision. The whole problem is that she plans leaving for

New

> Zealand for teacher's college for a yr. If we could get someone to

> monitor the ATD over there, then that might buy us some more time

to

> decide surgery later if the meds didn't resolve it. He never said

> anything about going into remission. Is this possible with

> medication? We see the ENT surgeon tomorrow. He was the first dr

we

> were referred to after the ultra sound. He did say that he studied

in

> NZ and knew of a good thyroid dr. We are hoping he can send her to

> him. I'm not sure what this entails getting medical

> treatment/monitoring in a different country. Anybody know? We live

in

> Ontario, Canada and are under provincial medical insurance

coverage.

> How long can someone live with hyper and it go unnoticed.

Wondering

> how long it takes for a nodule to grow where the notice it. Could

she

> have been living with hyper for yrs before? She doesn't have that

> many symptoms. They keep asking her and she says no to most. How

long

> can someone go on with hyper before it really gets serious?

>

> >

> > ,

> >

> > First the RAI does go to the whole thyroid. So the whole

thyroid

> is

> > effected not just a nodule.

> >

> > In rare cases (I think less than 1%) " hot " nodules can be

> cancerous. I have

> > a nodule and am hyperthyroid. I also have the TSI anitbody

> causing graves

> > diesease which can also cause hyperthyroidism. So its a toss up

> on which is

> > the real culprit in making me hyper. My dr and I have chosen

to

> keep an eye

> > on the nodule with sonograms. Cancerous nodules grow. If mine

> shows growth

> > then we'll do something about it at that time. (My dr has had

> multiple

> > nodules herself - most of them have shrunk on their own.) For

now

> we are treating

> > the hyperthyroid with vitiamins and such. The jury is still

out

> on how that

> > will work for me. At last labs my levels had come down a bit

but

> were still

> > on the high side. I had labs drawn again yesterday, so we'll

see.

> >

> > On the weight issue...In 10-20% of hyperthyroidism there can be

> weight gain

> > instead of weight loss. I am one of those lucky few. WooHoo!

I

> read

> > somewhere that this is because we are able to keep up with the

> increased hunger.

> > Although we should be really large for the amount of food we

eat

> our increased

> > metabolism does still burn off alot of the excess. Make

sense?

> >

> > I recommend you and/or your daughter check out the thyroid group

> on

> > Mediboard.com. It has hyperthyroid members that have been very

> successfull with the

> > ATD treatment route. They do not mind helping you monitor your

> dosing by

> > what has worked for them(personal experience). The true risk

with

> ATDs is

> > finding a dr that truly " knows " how to dose ATDs. Any dr can

> write the

> > prescription. Get my point?

> >

> > I personally know several people that have been on ATD's for

> several years.

> > One has been on them for 25 years. And without the horrible

side

> effects.

> > Again I think the trick is finding a dr that " know " how to use

> ATD's and how

> > to properly monitor patients taking ATD's.

> >

> > Hope that helps some. Best wishes,

> > Kim

> > aka Hyperkim

> >

March 24, 2006

Hi Amy

In 2000, my endocronologist told me to stop taking the anti-thyroid meds a month

before I had RAI. She did not want my thyroid stopped from absorbing the RAI.

I was given NOTHING to help afterwards. It was really rough. I went from being

extremely hyper to being very hypo in about a week. After I had taken the RAI

my endo went away on holidays. My heart was pounding at 150 bpm at rest and I

called my family doctor. He didn't know what to do. Literally. Told me to go

to emerg. My endo just wasn't available. As it happened, I rode it out. I

didn't even know about 'thyroid storm'.

I saw my endo in a month's time after. She was very satisfied that she had

absolutely ablated my thyroid. I think we all react differently. We all think

differently. And when I was hyper I just wanted it 'fixed' and took the first

thing offered. That seems to be a fairly common symptom amongst hyper's. Being

a hypo now isn't a whole lot of fun, I can tell you. If I had it to do over, I

would try for remission. But at the time, I was just very frightened and

anxious. I did ask my endo about being hypo after RAI and she said I never

would be. She said that the thyroid replacement meds would take care of it.

Well certainly my labs are good now. It took almost 3 years to get that

accomplished. Do I feel well? No. Would I prefer to risk being hyper? Yes.

But as I said, we're all different. Some people have absolutely no problem

(envy)...

Kate

Re: Daughter with Hyperthyroid

> >

> > Kim,

> > Thanks! The endo didn't say the whole thryoid would be affected

> with

> > RAI. Another thing to consiser then because she was under the

> > impression it would just be the nodule. Sounds like the RAI is

the

> > last resort for her. He did say with surgery they only took the

> 1/2

> > of the thyroid out and then the other 1/2 would take over and

> > compensate. Is this correct? Also with surgery, they would know

> for

> > sure if there was any cancer. Would she need any meds if 1/2 of

> the

> > thyroid is taken out? I still like the idea of ATD to try at

first

> to

> > buy some time(1-2 yrs). Feels like we are being pushed into

making

> a

> > rushed decision. The whole problem is that she plans leaving for

> New

> > Zealand for teacher's college for a yr. If we could get someone

to

> > monitor the ATD over there, then that might buy us some more

time

> to

> > decide surgery later if the meds didn't resolve it. He never

said

> > anything about going into remission. Is this possible with

> > medication? We see the ENT surgeon tomorrow. He was the first dr

> we

> > were referred to after the ultra sound. He did say that he

studied

> in

> > NZ and knew of a good thyroid dr. We are hoping he can send her

to

> > him. I'm not sure what this entails getting medical

> > treatment/monitoring in a different country. Anybody know? We

live

> in

> > Ontario, Canada and are under provincial medical insurance

> coverage.

> > How long can someone live with hyper and it go unnoticed.

> Wondering

> > how long it takes for a nodule to grow where the notice it.

Could

> she

> > have been living with hyper for yrs before? She doesn't have

that

> > many symptoms. They keep asking her and she says no to most. How

> long

> > can someone go on with hyper before it really gets serious?

> >

> > >

> > > ,

> > >

> > > First the RAI does go to the whole thyroid. So the whole

> thyroid

> > is

> > > effected not just a nodule.

> > >

> > > In rare cases (I think less than 1%) " hot " nodules can be

> > cancerous. I have

> > > a nodule and am hyperthyroid. I also have the TSI anitbody

> > causing graves

> > > diesease which can also cause hyperthyroidism. So its a toss

up

> > on which is

> > > the real culprit in making me hyper. My dr and I have chosen

> to

> > keep an eye

> > > on the nodule with sonograms. Cancerous nodules grow. If

mine

> > shows growth

> > > then we'll do something about it at that time. (My dr has

had

> > multiple

> > > nodules herself - most of them have shrunk on their own.)

For

> now

> > we are treating

> > > the hyperthyroid with vitiamins and such. The jury is still

> out

> > on how that

> > > will work for me. At last labs my levels had come down a bit

> but

> > were still

> > > on the high side. I had labs drawn again yesterday, so we'll

> see.

> > >

> > > On the weight issue...In 10-20% of hyperthyroidism there can

be

> > weight gain

> > > instead of weight loss. I am one of those lucky few.

WooHoo!

> I

> > read

> > > somewhere that this is because we are able to keep up with the

> > increased hunger.

> > > Although we should be really large for the amount of food we

> eat

> > our increased

> > > metabolism does still burn off alot of the excess. Make

> sense?

> > >

> > > I recommend you and/or your daughter check out the thyroid

group

> > on

> > > Mediboard.com. It has hyperthyroid members that have been

very

> > successfull with the

> > > ATD treatment route. They do not mind helping you monitor

your

> > dosing by

> > > what has worked for them(personal experience). The true risk

> with

> > ATDs is

> > > finding a dr that truly " knows " how to dose ATDs. Any dr can

> > write the

> > > prescription. Get my point?

> > >

> > > I personally know several people that have been on ATD's for

> > several years.

> > > One has been on them for 25 years. And without the horrible

> side

> > effects.

> > > Again I think the trick is finding a dr that " know " how to

use

> > ATD's and how

> > > to properly monitor patients taking ATD's.

> > >

> > > Hope that helps some. Best wishes,

> > > Kim

> > > aka Hyperkim

> > >

March 24, 2006

Okay, ladies. Everyone back to your corners.

It was interesting following the discussion. And learning where everyone

gets the information that helps them to come to a decision for themselves. I

was learning a lot. I am only four months into the realization that I have a

thyroid problem. And realizing that I have dealt with the symptoms for most

of my life.

RAI is obviously a very controversial issue. But I hope that some of the

facts that came through from both sides of the fence are considered by anyone

new to dealing with hyperthyroidism. And I believe both sides of this

discussion presented a lot of facts to back up their opinions.

I have personally met people on the net that have had success with each

method listed. And still more people that have tried each and not had any

luck.

What it comes down to is doing the research for oneself and coming to a

decision that one can live with. NO regrets.

So whether its RAI, surgery, anti-thyroid meds, vitamins, or herbs, we each

have to find the path that is right for us. We are the ones that know our

own bodies best. And in the end it is our own battle to fight. Whether we

fight being hyper or being hypo, it is a battle most of us will fight the rest

of our lives.

I wish the best to all those fighting thyroid issues. And I really want to

thank those that have found treatment that continue coming back to these

boards to share their stories for all the newbies that continue to show up.

After all that is what we are all here for. To share our stories and support

each other as we go through our own ordeals.

Best wishes,

Kim

aka Hyperkim

March 24, 2006

Hi Aimee,

These statistics are all available at the morbidity and mortality weekly

summaries and are readily available through government-sponsored websites. I've

been working in hospital laboratories, currently as a laboratory supervisor, for

more than 30 years, primarily in toxicology and immunology, including forensic

studies for coroner's offices. Unfortunately, the autoimmune nature of Graves'

disease was not well understood when I had RAI. Today, it's well known that

radioiodine injures the immune system, perpetuating the disease process.

There are also no reports of people dying from herbal supplements taken for

Graves' disease. I have to wonder where you are getting your information. I've

researched drug toxicity extensively this past year, and ATDs are no longer even

on the list of hepatotoxins. Some herbs are hepatotoxins and linked to liver

failure but these are not ones used in Graves' disease.

Although I did Not mention increased cancer incidence, there are several major

studies showing an increased rate of thyroid, myologenous leukemia, and small

bowel cancer from radioiodine. This is well established and you can talk to any

pathologist if you want details. The long-term cooperative studies of Elaine Ron

et al support this.

Endocrinology textbooks report an increased cancer incidence after RAI, and most

resources recommend that people who have had RAI have annual checkups for

thyroid cancer since we are prone to nodule development in the epithelial stump

that remains after RAI. Tissue studies done on thyroid cells remaining after RAI

show histological changes identical to thyroid cancers with bizarre cell nuclei.

And yes, 13 years after RAI I have two more autoimmune disorders, thyroid

nodules, osteoarthritis and degenerative disk disease related to hypothyroidism.

I'm not trying to argue with you, but you do a great disservice to Graves'

patients when you state facts that are false, exaggerated or misleading.

Interestingly, Graves' rage is also more common in people who have had RAI and

the boards are scattered with posts from people defending their decisions to

have had RAI. But after the first year post RAI, these same people generally

write to say they were mistaken.

Visit my new Autoimmune Disease Topic at http://autoimmunedisease.suite101.com

Re: Daughter with Hyperthyroid

> >

> > Kim,

> > Thanks! The endo didn't say the whole thryoid would be affected

> with

> > RAI. Another thing to consiser then because she was under the

> > impression it would just be the nodule. Sounds like the RAI is

the

> > last resort for her. He did say with surgery they only took the

> 1/2

> > of the thyroid out and then the other 1/2 would take over and

> > compensate. Is this correct? Also with surgery, they would know

> for

> > sure if there was any cancer. Would she need any meds if 1/2 of

> the

> > thyroid is taken out? I still like the idea of ATD to try at

first

> to

> > buy some time(1-2 yrs). Feels like we are being pushed into

making

> a

> > rushed decision. The whole problem is that she plans leaving for

> New

> > Zealand for teacher's college for a yr. If we could get someone

to

> > monitor the ATD over there, then that might buy us some more

time

> to

> > decide surgery later if the meds didn't resolve it. He never

said

> > anything about going into remission. Is this possible with

> > medication? We see the ENT surgeon tomorrow. He was the first dr

> we

> > were referred to after the ultra sound. He did say that he

studied

> in

> > NZ and knew of a good thyroid dr. We are hoping he can send her

to

> > him. I'm not sure what this entails getting medical

> > treatment/monitoring in a different country. Anybody know? We

live

> in

> > Ontario, Canada and are under provincial medical insurance

> coverage.

> > How long can someone live with hyper and it go unnoticed.

> Wondering

> > how long it takes for a nodule to grow where the notice it.

Could

> she

> > have been living with hyper for yrs before? She doesn't have

that

> > many symptoms. They keep asking her and she says no to most. How

> long

> > can someone go on with hyper before it really gets serious?

> >

> > >

> > > ,

> > >

> > > First the RAI does go to the whole thyroid. So the whole

> thyroid

> > is

> > > effected not just a nodule.

> > >

> > > In rare cases (I think less than 1%) " hot " nodules can be

> > cancerous. I have

> > > a nodule and am hyperthyroid. I also have the TSI anitbody

> > causing graves

> > > diesease which can also cause hyperthyroidism. So its a toss

up

> > on which is

> > > the real culprit in making me hyper. My dr and I have chosen

> to

> > keep an eye

> > > on the nodule with sonograms. Cancerous nodules grow. If

mine

> > shows growth

> > > then we'll do something about it at that time. (My dr has

had

> > multiple

> > > nodules herself - most of them have shrunk on their own.)

For

> now

> > we are treating

> > > the hyperthyroid with vitiamins and such. The jury is still

> out

> > on how that

> > > will work for me. At last labs my levels had come down a bit

> but

> > were still

> > > on the high side. I had labs drawn again yesterday, so we'll

> see.

> > >

> > > On the weight issue...In 10-20% of hyperthyroidism there can

be

> > weight gain

> > > instead of weight loss. I am one of those lucky few.

WooHoo!

> I

> > read

> > > somewhere that this is because we are able to keep up with the

> > increased hunger.

> > > Although we should be really large for the amount of food we

> eat

> > our increased

> > > metabolism does still burn off alot of the excess. Make

> sense?

> > >

> > > I recommend you and/or your daughter check out the thyroid

group

> > on

> > > Mediboard.com. It has hyperthyroid members that have been

very

> > successfull with the

> > > ATD treatment route. They do not mind helping you monitor

your

> > dosing by

> > > what has worked for them(personal experience). The true risk

> with

> > ATDs is

> > > finding a dr that truly " knows " how to dose ATDs. Any dr can

> > write the

> > > prescription. Get my point?

> > >

> > > I personally know several people that have been on ATD's for

> > several years.

> > > One has been on them for 25 years. And without the horrible

> side

> > effects.

> > > Again I think the trick is finding a dr that " know " how to

use

> > ATD's and how

> > > to properly monitor patients taking ATD's.

> > >

> > > Hope that helps some. Best wishes,

> > > Kim

> > > aka Hyperkim

> > >

March 24, 2006

I only posted my personal experience and extensive research because I saw so

many misleading posts at this site. It seems to be a very anti-RAI site. It also

seems to promote body cleansing treatments, herbs, books etc..

By reading your deffensive post, I don't think I'm the one with the rage.

I also think a professor of endocrinology knows quite a bit more about the

thyroid and RAI than a lab supervisor.

I was started on a Beta Blocker before my RAI too.Had no " thyroid storm " .

Untreated hyperthyroid can cause a thyroid storm too.

My doc checks my labs often so I don't become hypo without treatment.

My labs are now normal after I had the RAI almost 4 months ago and I now can

walk without pain and my heart isn't racing and skipping beats anymore. I'm

finally starting to feel normal after years and years of misery.

Amy

daisyelaine@... wrote: