New to group

[Guest guest]

Jill,

That is good advice. We are having a friend of mine decorate (she is

very crafty) a little wooden box with " Haley's ears " written on it. I

am considering buying her bunny ears from the Internet too. We want to

make this a positive thing for her.

LINDA A.

Re: new to group

In a message dated 11/27/2005 2:13:52 P.M. Eastern Standard Time,

DMBLin13@... writes:

Everyone keeps talking about the different colored molds. I know they

are available, and Haley's first molds were bright pink, but it always

looked like she had gum stick in her ear, and they brought more

attention then the clear ones. However I have heard that the kids like

the colored ones better.

I think for some kids being able to pick the color of their molds

helps them

not feel self conscious about the aids. Ian liked them the minute he

got the

" new " blue ones. We then moved onto red-white-blue swirls, his

favorite

variation and the one he always comes back to.. His first ones had

been sort'a

clear and a harder plastic. The colored ones have been softer and more

comfortable.

My daughter had (still has) hearing aid envy. She wanted purple

glitter

molds ... and she doesn't have a hearing loss. She use to make play

aids out of

playdough, pipe cleaners -- and those wickie sticks. She also made

herself

glasses like mine. She's still a bit annoyed that she has 1) perfect

hearing, 2)

20-15 vision and 3) beautifully straight teeth. All of which she

inherited

from her father. After the last visit to the dentist, she complained

that she

didn't even need braces which most of her friends are getting. We

tease her

that she is truly cursed, LOL.

Ian likes the colors and has no problems with total strangers asking

him

about his aids. Little kids in the mall will stare. On occasion in the

food

court, they'll practically climb into his lap to see what the colors

are in his

ears. The parents are always embarrassed, but he shows them and tells

them how

the aids help him hear.

I'm convinced it's all because of the attitude we took at the very

beginning. Nothing to be ashamed of, nothing to hide. His 4th grade

friends

asked to

try out the aids when he got them, so he'd wash off the mold and let

them

listen through them.

You daughter's TOD could do a presentation to her class and introduce

them

to the idea of hearing loss and hearing aids. It's amazing how easily

the

younger kids accept such things. If she has confidence, then they'll

be fine

with

it all.

Our son has never been teased about his aids or hearing loss. He's

been

teased about being short, about a girl having a crush on him, about

being a

terrible bowler ... but never about the hearing loss. He has a great

" so what "

face that he makes when anyone gives him grief, and he usually makes a

joke out

of things rather than getting mad.

Each kid is very different. The only other mainstreamed D/HOH kid in

our

school district is in Ian's grade. They've been friends since nursery

school

when they were 3. He hates being different, hates having his aids

noticed and

will do anything not to stand out from the crowd. So he will never

have colored

aids or molds unless it helped make them blend in with his hair. He

prefers

not to discuss his hearing loss. and even refuses to cooperate with

any

obvious services.

Be supportive about her aids. Let yours show ... make it an adventure

and

get matching molds next time. Get a special box for her to keep her

aids and

batteries in. We picked up a little metal one with an attached lid at

Walmart

for a couple of dollars. Ian still uses it. It sits on the shelf next

to his

bed.

Whatever it takes to build up her self esteem and pride in her aids.

We've

found that Ian's attitude sets the tone for how kids/people react.

Honestly,

most don't notice the bright blue aids and if they do, no one is ever

mean.

Best, Jill

[Guest guest]

Jill,

That is good advice. We are having a friend of mine decorate (she is

very crafty) a little wooden box with " Haley's ears " written on it. I

am considering buying her bunny ears from the Internet too. We want to

make this a positive thing for her.

LINDA A.

Re: new to group

In a message dated 11/27/2005 2:13:52 P.M. Eastern Standard Time,

DMBLin13@... writes:

Everyone keeps talking about the different colored molds. I know they

are available, and Haley's first molds were bright pink, but it always

looked like she had gum stick in her ear, and they brought more

attention then the clear ones. However I have heard that the kids like

the colored ones better.

I think for some kids being able to pick the color of their molds

helps them

not feel self conscious about the aids. Ian liked them the minute he

got the

" new " blue ones. We then moved onto red-white-blue swirls, his

favorite

variation and the one he always comes back to.. His first ones had

been sort'a

clear and a harder plastic. The colored ones have been softer and more

comfortable.

My daughter had (still has) hearing aid envy. She wanted purple

glitter

molds ... and she doesn't have a hearing loss. She use to make play

aids out of

playdough, pipe cleaners -- and those wickie sticks. She also made

herself

glasses like mine. She's still a bit annoyed that she has 1) perfect

hearing, 2)

20-15 vision and 3) beautifully straight teeth. All of which she

inherited

from her father. After the last visit to the dentist, she complained

that she

didn't even need braces which most of her friends are getting. We

tease her

that she is truly cursed, LOL.

Ian likes the colors and has no problems with total strangers asking

him

about his aids. Little kids in the mall will stare. On occasion in the

food

court, they'll practically climb into his lap to see what the colors

are in his

ears. The parents are always embarrassed, but he shows them and tells

them how

the aids help him hear.

I'm convinced it's all because of the attitude we took at the very

beginning. Nothing to be ashamed of, nothing to hide. His 4th grade

friends

asked to

try out the aids when he got them, so he'd wash off the mold and let

them

listen through them.

You daughter's TOD could do a presentation to her class and introduce

them

to the idea of hearing loss and hearing aids. It's amazing how easily

the

younger kids accept such things. If she has confidence, then they'll

be fine

with

it all.

Our son has never been teased about his aids or hearing loss. He's

been

teased about being short, about a girl having a crush on him, about

being a

terrible bowler ... but never about the hearing loss. He has a great

" so what "

face that he makes when anyone gives him grief, and he usually makes a

joke out

of things rather than getting mad.

Each kid is very different. The only other mainstreamed D/HOH kid in

our

school district is in Ian's grade. They've been friends since nursery

school

when they were 3. He hates being different, hates having his aids

noticed and

will do anything not to stand out from the crowd. So he will never

have colored

aids or molds unless it helped make them blend in with his hair. He

prefers

not to discuss his hearing loss. and even refuses to cooperate with

any

obvious services.

Be supportive about her aids. Let yours show ... make it an adventure

and

get matching molds next time. Get a special box for her to keep her

aids and

batteries in. We picked up a little metal one with an attached lid at

Walmart

for a couple of dollars. Ian still uses it. It sits on the shelf next

to his

bed.

Whatever it takes to build up her self esteem and pride in her aids.

We've

found that Ian's attitude sets the tone for how kids/people react.

Honestly,

most don't notice the bright blue aids and if they do, no one is ever

mean.

Best, Jill

[Guest guest]

Jill,

That is good advice. We are having a friend of mine decorate (she is

very crafty) a little wooden box with " Haley's ears " written on it. I

am considering buying her bunny ears from the Internet too. We want to

make this a positive thing for her.

LINDA A.

Re: new to group

In a message dated 11/27/2005 2:13:52 P.M. Eastern Standard Time,

DMBLin13@... writes:

Everyone keeps talking about the different colored molds. I know they

are available, and Haley's first molds were bright pink, but it always

looked like she had gum stick in her ear, and they brought more

attention then the clear ones. However I have heard that the kids like

the colored ones better.

I think for some kids being able to pick the color of their molds

helps them

not feel self conscious about the aids. Ian liked them the minute he

got the

" new " blue ones. We then moved onto red-white-blue swirls, his

favorite

variation and the one he always comes back to.. His first ones had

been sort'a

clear and a harder plastic. The colored ones have been softer and more

comfortable.

My daughter had (still has) hearing aid envy. She wanted purple

glitter

molds ... and she doesn't have a hearing loss. She use to make play

aids out of

playdough, pipe cleaners -- and those wickie sticks. She also made

herself

glasses like mine. She's still a bit annoyed that she has 1) perfect

hearing, 2)

20-15 vision and 3) beautifully straight teeth. All of which she

inherited

from her father. After the last visit to the dentist, she complained

that she

didn't even need braces which most of her friends are getting. We

tease her

that she is truly cursed, LOL.

Ian likes the colors and has no problems with total strangers asking

him

about his aids. Little kids in the mall will stare. On occasion in the

food

court, they'll practically climb into his lap to see what the colors

are in his

ears. The parents are always embarrassed, but he shows them and tells

them how

the aids help him hear.

I'm convinced it's all because of the attitude we took at the very

beginning. Nothing to be ashamed of, nothing to hide. His 4th grade

friends

asked to

try out the aids when he got them, so he'd wash off the mold and let

them

listen through them.

You daughter's TOD could do a presentation to her class and introduce

them

to the idea of hearing loss and hearing aids. It's amazing how easily

the

younger kids accept such things. If she has confidence, then they'll

be fine

with

it all.

Our son has never been teased about his aids or hearing loss. He's

been

teased about being short, about a girl having a crush on him, about

being a

terrible bowler ... but never about the hearing loss. He has a great

" so what "

face that he makes when anyone gives him grief, and he usually makes a

joke out

of things rather than getting mad.

Each kid is very different. The only other mainstreamed D/HOH kid in

our

school district is in Ian's grade. They've been friends since nursery

school

when they were 3. He hates being different, hates having his aids

noticed and

will do anything not to stand out from the crowd. So he will never

have colored

aids or molds unless it helped make them blend in with his hair. He

prefers

not to discuss his hearing loss. and even refuses to cooperate with

any

obvious services.

Be supportive about her aids. Let yours show ... make it an adventure

and

get matching molds next time. Get a special box for her to keep her

aids and

batteries in. We picked up a little metal one with an attached lid at

Walmart

for a couple of dollars. Ian still uses it. It sits on the shelf next

to his

bed.

Whatever it takes to build up her self esteem and pride in her aids.

We've

found that Ian's attitude sets the tone for how kids/people react.

Honestly,

most don't notice the bright blue aids and if they do, no one is ever

mean.

Best, Jill

[Guest guest]

Hi - I just have to chime in here re: colored earmolds. They're

the best! As many here know, my all time favorites were when the boys

had glow in the dark earmolds. They were just hysterical! But we've

had every sports team combo you can imagine (I have girls of course - no

pink in my house!), etc., etc. Sam had one set of earmolds that were

blue, green and white and almost liked like a world map! It really

makes them fun.

Barbara

DMBLin13@... wrote:

> Jill,

>

> That is good advice. We are having a friend of mine decorate (she is

> very crafty) a little wooden box with " Haley's ears " written on it. I

> am considering buying her bunny ears from the Internet too. We want to

> make this a positive thing for her.

>

[Guest guest]

Thank you so much Mike for taking time to inform me. Lately I've felt I'm

running in circles. I will check into the possibility of classes. Smaller meals

makes sense. Like I mentioned, I feel like I am eating so little but I'll wager

the calories are too high and that's why no weight loss. I appreciate you

helping.

Kaitland

[Guest guest]

Thank you so much Mike for taking time to inform me. Lately I've felt I'm

running in circles. I will check into the possibility of classes. Smaller meals

makes sense. Like I mentioned, I feel like I am eating so little but I'll wager

the calories are too high and that's why no weight loss. I appreciate you

helping.

Kaitland

[Guest guest]

-Patti - If your child has not had a small intestinal biopsy via

endoscopy, I would try to schedule that as soon as possible. You

probably know that the small intestinal biops is the 'gold standard'

for diagnosis of ceiac disease. If you put him on a gluten-free

diet and then schedule the endoscopy, his small intestinal villi may

have begun to heal, and the readings of the biopsy might be

equivocal. I would advise getting the endoscopy with small

intestinal biopsy NOW, then starting the g-f diet.

As celiac disease is in the family, it seems like a reasonable way

to go. However, I am a celiac, so when my son had severe intestinal

problems we all thought it was celiac disease. He ended up with a

diagnosis of ulerative colitis and had his entire colon removed (he

has an internal bag).

My heart hurts for your little one. It is so terrible to see a

child suffering. I hope you can move quickly to find out what is

the problem and what to do about it. The genetic makeup will not

change, so that can be done at any time, but get that biopsy done,

and then go gluten-free, and hope that you'll get some answers

quickly.

One more thing: the results of all the blood tests, (IgA, IgG, tTg,

etc,) and the small bowel biopsy need to be read by a lab that is

familiar with the readings and know what they are looking for.

Good luck to you and your little sweetie.

BJ in Ca.

--In SillyYaks , " esther_p210 " wrote:

>

> Patti, My brief advice to you is have him go gluten free ASAP.

>

> His story sounds like mine. I was only positive on one blood

> test. My biopsy came back negative. Took a small bowel follow

> through. Also negative. Colonoscopy revealed lymphocytic colitis

> (a form of microscopic colitis). Many many LC sufferers are helped

> by a GF diet. So, I went GF even though the doctors were saying

> " not celiac, here take these meds instead of the hassle of GF

> eating " . But guess what? With GF eating I started to feel better

> in DAYS! DAYS, I tell you. After being miserable for years, and

> totally and completely miserable for months. And guess what else?

> My antibodies went down to undetectable levels after only 3 months

> of GF eating. So, I consider myself the luckiest celiac on the

> planet - I got diagnosed by blood tests before the visible damage

> was done!

>

> Also - the other thing to completely avoid with lymphocytic

> colitis is all NSAIDs (aspirin, ibuprofen, naproxen, aleve, etc).

>

> I hope he feels better soon!

> Esther in RI

>

>

> >

> > I had suspected celiac

> > before and now I did again. I demanded a blood test. 2 out of

3

> > came out positive. He went to a pedi. gastro. He did an

endoscopy

> > and the biopsies came back negative. I did more blood tests and

> > allergy tests and a stool sample. All came back negative or

normal,

> > except the other celiac test( a more sensitive one). That

showed

> > High levels of IgG. The gastro doctor suggested a colonoscopy.

That

> > showed microscopic colitis.

>

[Guest guest]

-Patti - If your child has not had a small intestinal biopsy via

endoscopy, I would try to schedule that as soon as possible. You

probably know that the small intestinal biops is the 'gold standard'

for diagnosis of ceiac disease. If you put him on a gluten-free

diet and then schedule the endoscopy, his small intestinal villi may

have begun to heal, and the readings of the biopsy might be

equivocal. I would advise getting the endoscopy with small

intestinal biopsy NOW, then starting the g-f diet.

As celiac disease is in the family, it seems like a reasonable way

to go. However, I am a celiac, so when my son had severe intestinal

problems we all thought it was celiac disease. He ended up with a

diagnosis of ulerative colitis and had his entire colon removed (he

has an internal bag).

My heart hurts for your little one. It is so terrible to see a

child suffering. I hope you can move quickly to find out what is

the problem and what to do about it. The genetic makeup will not

change, so that can be done at any time, but get that biopsy done,

and then go gluten-free, and hope that you'll get some answers

quickly.

One more thing: the results of all the blood tests, (IgA, IgG, tTg,

etc,) and the small bowel biopsy need to be read by a lab that is

familiar with the readings and know what they are looking for.

Good luck to you and your little sweetie.

BJ in Ca.

--In SillyYaks , " esther_p210 " wrote:

>

> Patti, My brief advice to you is have him go gluten free ASAP.

>

> His story sounds like mine. I was only positive on one blood

> test. My biopsy came back negative. Took a small bowel follow

> through. Also negative. Colonoscopy revealed lymphocytic colitis

> (a form of microscopic colitis). Many many LC sufferers are helped

> by a GF diet. So, I went GF even though the doctors were saying

> " not celiac, here take these meds instead of the hassle of GF

> eating " . But guess what? With GF eating I started to feel better

> in DAYS! DAYS, I tell you. After being miserable for years, and

> totally and completely miserable for months. And guess what else?

> My antibodies went down to undetectable levels after only 3 months

> of GF eating. So, I consider myself the luckiest celiac on the

> planet - I got diagnosed by blood tests before the visible damage

> was done!

>

> Also - the other thing to completely avoid with lymphocytic

> colitis is all NSAIDs (aspirin, ibuprofen, naproxen, aleve, etc).

>

> I hope he feels better soon!

> Esther in RI

>

>

> >

> > I had suspected celiac

> > before and now I did again. I demanded a blood test. 2 out of

3

> > came out positive. He went to a pedi. gastro. He did an

endoscopy

> > and the biopsies came back negative. I did more blood tests and

> > allergy tests and a stool sample. All came back negative or

normal,

> > except the other celiac test( a more sensitive one). That

showed

> > High levels of IgG. The gastro doctor suggested a colonoscopy.

That

> > showed microscopic colitis.

>

[Guest guest]

Patti- We go to Children's 2x's pere year and although it's not the

same condition i think it's the same area of the hospital (fegan 5)

We've been pleased with the services there and the doctors, good

luck.

I thank god

> that I already have another appointment for a second opinion. It's

> supposed to be at a one of the best hospitals, the Boston Childrens

> Hospital. So hopefully I can get a good answer,

[Guest guest]

During the time of my diagnosis, you could classify me as " crabby " too. My

defense was who wouldn't be irritable when you haven't felt good in like

forever?!?!?!? Well after going GF my moods changed dramatically. It

turns out that moods swings are one of my symptoms (I have no gastro ones)

of being glutened. Just to put how bad they actually were after a

particularly bad day at work I came home very crabby. My 4 year old son

innocently enough asked me " Mom did you eat gluten today?!?!? "

Re: New to group

> Esther,

> I'm just extremely lost and I think that's a good idea and I probably

> will start him on that ASAP. My thing is he's not calling it that

> lymphocytic colitis. He's calling it a small form of ulcerative

> colitis, but with his name " indeterminable colitis " . I thank god

> that I already have another appointment for a second opinion. It's

> supposed to be at a one of the best hospitals, the Boston Childrens

> Hospital. So hopefully I can get a good answer, not what this one is

> saying.

> I just hate to see him miserable and now he's getting more and more

> impatient and lashing out too. and that is definitely not him.

>

> Thank you for your advice.

> Patti

>

>

>>

>> Patti, My brief advice to you is have him go gluten free ASAP.

>>

>> His story sounds like mine. I was only positive on one blood

>> test. My biopsy came back negative. Took a small bowel follow

>> through. Also negative. Colonoscopy revealed lymphocytic colitis

>> (a form of microscopic colitis). Many many LC sufferers are helped

>> by a GF diet. So, I went GF even though the doctors were saying

>> " not celiac, here take these meds instead of the hassle of GF

>> eating " . But guess what? With GF eating I started to feel better

>> in DAYS! DAYS, I tell you. After being miserable for years, and

>> totally and completely miserable for months. And guess what else?

>> My antibodies went down to undetectable levels after only 3 months

>> of GF eating. So, I consider myself the luckiest celiac on the

>> planet - I got diagnosed by blood tests before the visible damage

>> was done!

>>

>> Also - the other thing to completely avoid with lymphocytic

>> colitis is all NSAIDs (aspirin, ibuprofen, naproxen, aleve, etc).

>>

>> I hope he feels better soon!

>> Esther in RI

>>

>

>

>

>

>

>

>

>

[Guest guest]

I'm not saying that I didn't have my moments (or still don't - had one this

weekend too)! I don't think I ate for the first three days of the

diet!??!!? But luckily I like lots of food and have been able to adapt. I

haven't given up eating out either - it just takes me longer to order. Once

you figure out all the right questions, it's not so bad. Hang in there - it

does become second nature after a while (I've been diagnosed exactly one

year now) and of all the things to have to deal with, the diet is doable

Re: New to group

> Aww! Your son is adorable! I have to say i was diagnosed about 2

> months ago, i only feel a little better and this whole thing makes

> me cranky. i just started seeing a nutrionist which is a good thing

> to do, but im very fusterated by things like eating out which she

> advised against for now, (we used to eat out all the time)

> It totally has had its moments, example, yesterday bouyfriend and i

> went to the cherry blossom fest in brooklyn, for lunch they had a

> huge tent with a huge line (i waited a 1/2 hr for food!) they only

> thing they had i knew i could eat was veggie sushi, after that whole

> long wait, bf gets his food and they ran outta sushi talk about

> fusterating. moral of this story is bring food everywhere! (which i

> did and it was about 10 blocks away in the car!!) oi!

>

> L

>

>

> -- In SillyYaks , " princess_sapphire "

> wrote:

>>

>> ,

>> This condition does suck, but you do have to admit that was cute

> what

>> your son said.

>> I just try to be as patient as I can with him under the

>> circumstances. It is very hard and all I can do is do my best to

> be

>> there for him regardless.

>> Patti

>>

>>

>> > >>

>> > >> Patti, My brief advice to you is have him go gluten free ASAP.

>> > >>

>> > >> His story sounds like mine. I was only positive on one blood

>> > >> test. My biopsy came back negative. Took a small bowel follow

>> > >> through. Also negative. Colonoscopy revealed lymphocytic

> colitis

>> > >> (a form of microscopic colitis). Many many LC sufferers are

>> helped

>> > >> by a GF diet. So, I went GF even though the doctors were

> saying

>> > >> " not celiac, here take these meds instead of the hassle of GF

>> > >> eating " . But guess what? With GF eating I started to feel

> better

>> > >> in DAYS! DAYS, I tell you. After being miserable for years,

> and

>> > >> totally and completely miserable for months. And guess what

> else?

>> > >> My antibodies went down to undetectable levels after only 3

>> months

>> > >> of GF eating. So, I consider myself the luckiest celiac on the

>> > >> planet - I got diagnosed by blood tests before the visible

> damage

>> > >> was done!

>> > >>

>> > >> Also - the other thing to completely avoid with lymphocytic

>> > >> colitis is all NSAIDs (aspirin, ibuprofen, naproxen, aleve,

> etc).

>> > >>

>> > >> I hope he feels better soon!

>> > >> Esther in RI

>> > >>

>> > >

>> > >

>> > >

>> > >

>> > >

>> > >

>> > >

>> > >

[Guest guest]

Hi ! Welcome...

You haven't had a good time at all!!!

Plenty of folks here to talk to... so you're in the right place....

With your thyroid.... After the surgery they should have started you on

meds, they did. They put you on Synthroid... that's not so good... but

we'll get into that later.

Considering the reason for your surgery, their first priority was to

suppress your TSH to reduce the likelihood of thyroid gland stimulation

and recurrence of growth... do you have any copies of your labs that you

could post for us to see?

From here on... I think the high priority is going to be to reduce the

chances of re growth.. that means bringing your TSH down as close to zero

as possible... and... with the first thyroidectomy and the additional

surgery to remove the re growth you can pretty much figure that your

parathyroids are toast so you are going to do much better, most likely,

on natural thyroid replacement rather than a synthetic T4 only

replacement.... we'll get into all of that as we go.....

How much time has passed since your last surgery?

What meds are you on now?

When is your next set of labs scheduled?

How are you feeling now???

Have your daughters had thyroid labs done?

Any history of thyroid malfunction of any kind in your family?

.... More questions to come...

*evil grin*

Topper ()

**********************

Hello everyone. I am new to the group and just wanted to say hello.

I joined this group so that I can have someone to talk to about what

I've been going through. I had a total Thyroidectomy back in May

2002 due to a very large goiter in my neck. Six months after that I

had a scar revision which was a surgery for them to try to fix the

scar. It didnt look to preety. So then life went on and I was taking

synthroid everyday. Now a year 1/2 ago I started breathing funny and

weezing alot and it was very hard to do normal activities, then I

found out I was pregnant. So everytime I would bring it up at the Dr

office they kept blaming it on my pregnancy and wouldnt take any

xrays or anything. So finally I had my daughter March 2006, but

after her birth I was still breathing funny, still doctors did

nothing. So had an appt to get my tubes tied but I was nervous

about them putting me to sleep with me breathing so funny, so I made

an appt and talked to a doctor to see if it was ok to be put to

sleep. So after listening to my breathing and finally performing

different breathing tests and doing xrays, they found out I had a

tumor that started in my neck where the old thyroid used to be and

it grew all the way down inside my chest, which is why I was having

so many problems. I was then told that alittle thyroid couldve been

left in accidently from the first surgery so this thing was growing

in me all this time and I basically had another thyroid that had

just about closed my breathing tube and was pushing on my heart and

other things. So they said I had to have emergency surgery to have

it removed and that they would have to cut my chest and back open to

get this large tumor out and that I had a 50/50 chance and that if I

didnt have the surgery I would die........Needless to say I was very

scared. I wrote goodbye letters to my parents, husband and all 4 of

my girls just in case I didnt make it and I did alot of praying.

Well the good news is as you can see I did make it, and they ended

up being able to get it all out threw my neck instead of going in my

chest and back. I am now revovering from this surgery but kindve

scared that this may happen again. On top of having a baby then

going through this, I just moved to Ft Hood Tx and we got here late

because my surgery was 6 days before we were supposed to move here

from Va, so its been very hectic for me. So I'm hoping to talk with

members of the group since I have no one else to talk to that would

understand any of what I'm going through. Sorry to put all of this

in one email but just needed to talk. Thanks................

[Guest guest]

Hi ! Welcome...

You haven't had a good time at all!!!

Plenty of folks here to talk to... so you're in the right place....

With your thyroid.... After the surgery they should have started you on

meds, they did. They put you on Synthroid... that's not so good... but

we'll get into that later.

Considering the reason for your surgery, their first priority was to

suppress your TSH to reduce the likelihood of thyroid gland stimulation

and recurrence of growth... do you have any copies of your labs that you

could post for us to see?

From here on... I think the high priority is going to be to reduce the

chances of re growth.. that means bringing your TSH down as close to zero

as possible... and... with the first thyroidectomy and the additional

surgery to remove the re growth you can pretty much figure that your

parathyroids are toast so you are going to do much better, most likely,

on natural thyroid replacement rather than a synthetic T4 only

replacement.... we'll get into all of that as we go.....

How much time has passed since your last surgery?

What meds are you on now?

When is your next set of labs scheduled?

How are you feeling now???

Have your daughters had thyroid labs done?

Any history of thyroid malfunction of any kind in your family?

.... More questions to come...

*evil grin*

Topper ()

**********************

Hello everyone. I am new to the group and just wanted to say hello.

I joined this group so that I can have someone to talk to about what

I've been going through. I had a total Thyroidectomy back in May

2002 due to a very large goiter in my neck. Six months after that I

had a scar revision which was a surgery for them to try to fix the

scar. It didnt look to preety. So then life went on and I was taking

synthroid everyday. Now a year 1/2 ago I started breathing funny and

weezing alot and it was very hard to do normal activities, then I

found out I was pregnant. So everytime I would bring it up at the Dr

office they kept blaming it on my pregnancy and wouldnt take any

xrays or anything. So finally I had my daughter March 2006, but

after her birth I was still breathing funny, still doctors did

nothing. So had an appt to get my tubes tied but I was nervous

about them putting me to sleep with me breathing so funny, so I made

an appt and talked to a doctor to see if it was ok to be put to

sleep. So after listening to my breathing and finally performing

different breathing tests and doing xrays, they found out I had a

tumor that started in my neck where the old thyroid used to be and

it grew all the way down inside my chest, which is why I was having

so many problems. I was then told that alittle thyroid couldve been

left in accidently from the first surgery so this thing was growing

in me all this time and I basically had another thyroid that had

just about closed my breathing tube and was pushing on my heart and

other things. So they said I had to have emergency surgery to have

it removed and that they would have to cut my chest and back open to

get this large tumor out and that I had a 50/50 chance and that if I

didnt have the surgery I would die........Needless to say I was very

scared. I wrote goodbye letters to my parents, husband and all 4 of

my girls just in case I didnt make it and I did alot of praying.

Well the good news is as you can see I did make it, and they ended

up being able to get it all out threw my neck instead of going in my

chest and back. I am now revovering from this surgery but kindve

scared that this may happen again. On top of having a baby then

going through this, I just moved to Ft Hood Tx and we got here late

because my surgery was 6 days before we were supposed to move here

from Va, so its been very hectic for me. So I'm hoping to talk with

members of the group since I have no one else to talk to that would

understand any of what I'm going through. Sorry to put all of this

in one email but just needed to talk. Thanks................

[Guest guest]

Hi ,

Welcome to the group and know that you will get answers as we all

put in our 2 cents. First it would be helpfull if you could give us

the results of your last blood test and what they tested you for and

include the range that they use.

For example: tsh 4.05 range .3-3.0. That way it gives us an idea

of where you are and how best to help. Mostly we all just go on our

own experience and how we have got the way we are today by

experimenting and insisting on getting certain tests done that we

need. There could be other things that are going on that are

thyroid related but the doc is not addressing so the more test info

you can give the better.

Dawn

>

> My sisters suggested that I join this group. I have been battling

> hypothyroidism since college and I am 36, now. I was on .125 mg

of

> synthroid for many years and one day my thyroid started acting

strange

> again. I had a really good dr. then he retired. I went back to a

GP.

> I had been trying to get disability for other med. problems since

2002

> and in 2003 my body decided it was too tired and I took a year off

to

> wait for disability. During that time, I had state medical care

and a

> good endo. dr. Then, June 2004, I got my disability and

medicaid. I

> was basically forced to go back to a GP. So basically, my thyroid

> hasn't been okay since 2004. My GP tests it regularly and I have

been

> on .150 for about 6 months but I still feel tired. I have other

issues

> with this dr., too and switching GP's in August and hoping she

will

> give me a referral to an endo. which this dr. refuses to do.

Sorry so

> long.

>

>

>

[Guest guest]

Hi ,

Welcome to the group and know that you will get answers as we all

put in our 2 cents. First it would be helpfull if you could give us

the results of your last blood test and what they tested you for and

include the range that they use.

For example: tsh 4.05 range .3-3.0. That way it gives us an idea

of where you are and how best to help. Mostly we all just go on our

own experience and how we have got the way we are today by

experimenting and insisting on getting certain tests done that we

need. There could be other things that are going on that are

thyroid related but the doc is not addressing so the more test info

you can give the better.

Dawn

>

> My sisters suggested that I join this group. I have been battling

> hypothyroidism since college and I am 36, now. I was on .125 mg

of

> synthroid for many years and one day my thyroid started acting

strange

> again. I had a really good dr. then he retired. I went back to a

GP.

> I had been trying to get disability for other med. problems since

2002

> and in 2003 my body decided it was too tired and I took a year off

to

> wait for disability. During that time, I had state medical care

and a

> good endo. dr. Then, June 2004, I got my disability and

medicaid. I

> was basically forced to go back to a GP. So basically, my thyroid

> hasn't been okay since 2004. My GP tests it regularly and I have

been

> on .150 for about 6 months but I still feel tired. I have other

issues

> with this dr., too and switching GP's in August and hoping she

will

> give me a referral to an endo. which this dr. refuses to do.

Sorry so

> long.

>

>

>

[Guest guest]

Hi ,

Welcome to the group and know that you will get answers as we all

put in our 2 cents. First it would be helpfull if you could give us

the results of your last blood test and what they tested you for and

include the range that they use.

For example: tsh 4.05 range .3-3.0. That way it gives us an idea

of where you are and how best to help. Mostly we all just go on our

own experience and how we have got the way we are today by

experimenting and insisting on getting certain tests done that we

need. There could be other things that are going on that are

thyroid related but the doc is not addressing so the more test info

you can give the better.

Dawn

>

> My sisters suggested that I join this group. I have been battling

> hypothyroidism since college and I am 36, now. I was on .125 mg

of

> synthroid for many years and one day my thyroid started acting

strange

> again. I had a really good dr. then he retired. I went back to a

GP.

> I had been trying to get disability for other med. problems since

2002

> and in 2003 my body decided it was too tired and I took a year off

to

> wait for disability. During that time, I had state medical care

and a

> good endo. dr. Then, June 2004, I got my disability and

medicaid. I

> was basically forced to go back to a GP. So basically, my thyroid

> hasn't been okay since 2004. My GP tests it regularly and I have

been

> on .150 for about 6 months but I still feel tired. I have other

issues

> with this dr., too and switching GP's in August and hoping she

will

> give me a referral to an endo. which this dr. refuses to do.

Sorry so

> long.

>

>

>

[Guest guest]

Hi Dawn

I don't know what my last TSH test was...the nurse called me back and

told me that it was within normal range. I am going the dr. on Mon.

and get my last 2 to 3 results. This dr. has been very uncooperative

as of late and I am lucky to get my refills. I am starting with a

new dr. on Aug. 11. Should I ask her for a full thyroid test (TSH,

T3, and T4)? Here is a little of my thyroid history: In 1992, I

started feeling sluggish and started gaining weight. I had always

weighed about 120 and was up to 152. I went to student health and

yes I did have hypothyroidism. I think I started at .75 and

continued to increase to .125 mg. In 1998, I graduated from college

and had no health insurance. I was being followed various drs. at

our free clinic. In 2001, I got a job with insurance and found out I

had fibro. My thyroid hadn't changed. Then 2002, I had knee surgery

and they discovered arthritis. My thyroid was the same. In 2003, I

became unable to work and took time off for a year. I started

receiving state assistance and had a really good dr. I was increased

to .150 mg and started feeling better. I was ok until about July

2004. In the meantime I got disability and medicaid. I was

basically forced to return to my GP. I have been up to .175 mg and

down .125 I asked him how we could get my thyroid right. He said we

just wait until the blood shows you are ok. I have been going every

3 months for blood work and now nothing for ?? I am on .150 mg,

right now but I am still lethargic and overweight. What questions

should I ask? I want to be more benevolent to my thyroid.

> >

> > My sisters suggested that I join this group. I have been

battling

> > hypothyroidism since college and I am 36, now. I was on .125 mg

> of

> > synthroid for many years and one day my thyroid started acting

> strange

> > again. I had a really good dr. then he retired. I went back to

a

> GP.

> > I had been trying to get disability for other med. problems since

> 2002

> > and in 2003 my body decided it was too tired and I took a year

off

> to

> > wait for disability. During that time, I had state medical care

> and a

> > good endo. dr. Then, June 2004, I got my disability and

> medicaid. I

> > was basically forced to go back to a GP. So basically, my

thyroid

> > hasn't been okay since 2004. My GP tests it regularly and I

have

> been

> > on .150 for about 6 months but I still feel tired. I have other

> issues

> > with this dr., too and switching GP's in August and hoping she

> will

> > give me a referral to an endo. which this dr. refuses to do.

> Sorry so

> > long.

> >

> >

> >

>

[Guest guest]

Hi Dawn

I don't know what my last TSH test was...the nurse called me back and

told me that it was within normal range. I am going the dr. on Mon.

and get my last 2 to 3 results. This dr. has been very uncooperative

as of late and I am lucky to get my refills. I am starting with a

new dr. on Aug. 11. Should I ask her for a full thyroid test (TSH,

T3, and T4)? Here is a little of my thyroid history: In 1992, I

started feeling sluggish and started gaining weight. I had always

weighed about 120 and was up to 152. I went to student health and

yes I did have hypothyroidism. I think I started at .75 and

continued to increase to .125 mg. In 1998, I graduated from college

and had no health insurance. I was being followed various drs. at

our free clinic. In 2001, I got a job with insurance and found out I

had fibro. My thyroid hadn't changed. Then 2002, I had knee surgery

and they discovered arthritis. My thyroid was the same. In 2003, I

became unable to work and took time off for a year. I started

receiving state assistance and had a really good dr. I was increased

to .150 mg and started feeling better. I was ok until about July

2004. In the meantime I got disability and medicaid. I was

basically forced to return to my GP. I have been up to .175 mg and

down .125 I asked him how we could get my thyroid right. He said we

just wait until the blood shows you are ok. I have been going every

3 months for blood work and now nothing for ?? I am on .150 mg,

right now but I am still lethargic and overweight. What questions

should I ask? I want to be more benevolent to my thyroid.

> >

> > My sisters suggested that I join this group. I have been

battling

> > hypothyroidism since college and I am 36, now. I was on .125 mg

> of

> > synthroid for many years and one day my thyroid started acting

> strange

> > again. I had a really good dr. then he retired. I went back to

a

> GP.

> > I had been trying to get disability for other med. problems since

> 2002

> > and in 2003 my body decided it was too tired and I took a year

off

> to

> > wait for disability. During that time, I had state medical care

> and a

> > good endo. dr. Then, June 2004, I got my disability and

> medicaid. I

> > was basically forced to go back to a GP. So basically, my

thyroid

> > hasn't been okay since 2004. My GP tests it regularly and I

have

> been

> > on .150 for about 6 months but I still feel tired. I have other

> issues

> > with this dr., too and switching GP's in August and hoping she

> will

> > give me a referral to an endo. which this dr. refuses to do.

> Sorry so

> > long.

> >

> >

> >

>

[Guest guest]

Hi Dawn

I don't know what my last TSH test was...the nurse called me back and

told me that it was within normal range. I am going the dr. on Mon.

and get my last 2 to 3 results. This dr. has been very uncooperative

as of late and I am lucky to get my refills. I am starting with a

new dr. on Aug. 11. Should I ask her for a full thyroid test (TSH,

T3, and T4)? Here is a little of my thyroid history: In 1992, I

started feeling sluggish and started gaining weight. I had always

weighed about 120 and was up to 152. I went to student health and

yes I did have hypothyroidism. I think I started at .75 and

continued to increase to .125 mg. In 1998, I graduated from college

and had no health insurance. I was being followed various drs. at

our free clinic. In 2001, I got a job with insurance and found out I

had fibro. My thyroid hadn't changed. Then 2002, I had knee surgery

and they discovered arthritis. My thyroid was the same. In 2003, I

became unable to work and took time off for a year. I started

receiving state assistance and had a really good dr. I was increased

to .150 mg and started feeling better. I was ok until about July

2004. In the meantime I got disability and medicaid. I was

basically forced to return to my GP. I have been up to .175 mg and

down .125 I asked him how we could get my thyroid right. He said we

just wait until the blood shows you are ok. I have been going every

3 months for blood work and now nothing for ?? I am on .150 mg,

right now but I am still lethargic and overweight. What questions

should I ask? I want to be more benevolent to my thyroid.

> >

> > My sisters suggested that I join this group. I have been

battling

> > hypothyroidism since college and I am 36, now. I was on .125 mg

> of

> > synthroid for many years and one day my thyroid started acting

> strange

> > again. I had a really good dr. then he retired. I went back to

a

> GP.

> > I had been trying to get disability for other med. problems since

> 2002

> > and in 2003 my body decided it was too tired and I took a year

off

> to

> > wait for disability. During that time, I had state medical care

> and a

> > good endo. dr. Then, June 2004, I got my disability and

> medicaid. I

> > was basically forced to go back to a GP. So basically, my

thyroid

> > hasn't been okay since 2004. My GP tests it regularly and I

have

> been

> > on .150 for about 6 months but I still feel tired. I have other

> issues

> > with this dr., too and switching GP's in August and hoping she

> will

> > give me a referral to an endo. which this dr. refuses to do.

> Sorry so

> > long.

> >

> >

> >

>

[Guest guest]

Hi ,

You need to get free t4, free t3, tsh, B12, ferritin, cbc, I am sure

there are others but brain is not working. Hope someone else jumps

in with what I have missed. I should go to bed.

Dawn

> > >

> > > My sisters suggested that I join this group. I have been

> battling

> > > hypothyroidism since college and I am 36, now. I was on .125

mg

> > of

> > > synthroid for many years and one day my thyroid started acting

> > strange

> > > again. I had a really good dr. then he retired. I went back

to

> a

> > GP.

> > > I had been trying to get disability for other med. problems

since

> > 2002

> > > and in 2003 my body decided it was too tired and I took a year

> off

> > to

> > > wait for disability. During that time, I had state medical

care

> > and a

> > > good endo. dr. Then, June 2004, I got my disability and

> > medicaid. I

> > > was basically forced to go back to a GP. So basically, my

> thyroid

> > > hasn't been okay since 2004. My GP tests it regularly and I

> have

> > been

> > > on .150 for about 6 months but I still feel tired. I have

other

> > issues

> > > with this dr., too and switching GP's in August and hoping she

> > will

> > > give me a referral to an endo. which this dr. refuses to do.

> > Sorry so

> > > long.

> > >

> > >

> > >

> >

>

[Guest guest]

Hi ,

You need to get free t4, free t3, tsh, B12, ferritin, cbc, I am sure

there are others but brain is not working. Hope someone else jumps

in with what I have missed. I should go to bed.

Dawn

> > >

> > > My sisters suggested that I join this group. I have been

> battling

> > > hypothyroidism since college and I am 36, now. I was on .125

mg

> > of

> > > synthroid for many years and one day my thyroid started acting

> > strange

> > > again. I had a really good dr. then he retired. I went back

to

> a

> > GP.

> > > I had been trying to get disability for other med. problems

since

> > 2002

> > > and in 2003 my body decided it was too tired and I took a year

> off

> > to

> > > wait for disability. During that time, I had state medical

care

> > and a

> > > good endo. dr. Then, June 2004, I got my disability and

> > medicaid. I

> > > was basically forced to go back to a GP. So basically, my

> thyroid

> > > hasn't been okay since 2004. My GP tests it regularly and I

> have

> > been

> > > on .150 for about 6 months but I still feel tired. I have

other

> > issues

> > > with this dr., too and switching GP's in August and hoping she

> > will

> > > give me a referral to an endo. which this dr. refuses to do.

> > Sorry so

> > > long.

> > >

> > >

> > >

> >

>

[Guest guest]

Hi ,

You need to get free t4, free t3, tsh, B12, ferritin, cbc, I am sure

there are others but brain is not working. Hope someone else jumps

in with what I have missed. I should go to bed.

Dawn

> > >

> > > My sisters suggested that I join this group. I have been

> battling

> > > hypothyroidism since college and I am 36, now. I was on .125

mg

> > of

> > > synthroid for many years and one day my thyroid started acting

> > strange

> > > again. I had a really good dr. then he retired. I went back

to

> a

> > GP.

> > > I had been trying to get disability for other med. problems

since

> > 2002

> > > and in 2003 my body decided it was too tired and I took a year

> off

> > to

> > > wait for disability. During that time, I had state medical

care

> > and a

> > > good endo. dr. Then, June 2004, I got my disability and

> > medicaid. I

> > > was basically forced to go back to a GP. So basically, my

> thyroid

> > > hasn't been okay since 2004. My GP tests it regularly and I

> have

> > been

> > > on .150 for about 6 months but I still feel tired. I have

other

> > issues

> > > with this dr., too and switching GP's in August and hoping she

> > will

> > > give me a referral to an endo. which this dr. refuses to do.

> > Sorry so

> > > long.

> > >

> > >

> > >

> >

>

[Guest guest]

Dawn, what do the B12 and ferritin levels tell us? What symptoms or probs would there be from low numbers on those?

Thanks!

sue

Hi ,

You need to get free t4, free t3, tsh, B12, ferritin, cbc, I am sure

there are others but brain is not working. Hope someone else jumps

in with what I have missed. I should go to bed.

Dawn

[Guest guest]

Hi Sue,

Copied this to here from the daily letter I get from dr Weil I find

he is ususally pretty good being 'intergrated' where he takes the

best from natural and the MD realms. I could not explain it as

well. Ferritin is stored iron. Dawn

2006-07-19

Daily Tip

Getting Your Vitamin B12

B vitamins help support adrenal function, help calm and maintain a

healthy nervous system, and are all necessary for key metabolic

processes. Vitamin B12, also known as cyanocobalamin, is necessary

for DNA synthesis and affects the development of red blood cells,

normal myelination (covering) of nerve cells, and the production of

neurotransmitters. Deficiencies of B12 can lead to memory loss,

confusion, fatigue, and even dementia.

Animal-derived foods, including dairy, eggs, meat, fish and poultry

are the only food sources of B12, so this important vitamin is often

deficient in vegan diets. Good sources are clams, herring, cooked

oysters and wild Alaskan salmon. To help meet daily needs, Dr. Weil

recommends a B-complex supplement that contains a full spectrum of B

vitamins, including thiamine, B12, riboflavin and niacin.

What's your view about this tip's subject? Share your thoughts in

the DrWeil.com Community.

Vitamin Advisor

Dr. Weil on Healthy Aging

My Optimum Health Plan

Self Healing Newsletter

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applicability of any opinions or

recommendations with respect to your symptoms or medical condition.

>

> >

> >

> >

> >

> > Hi ,

> > You need to get free t4, free t3, tsh, B12, ferritin, cbc, I am

sure

> > there are others but brain is not working. Hope someone else

jumps

> > in with what I have missed. I should go to bed.

> > Dawn

> >

> >

> >

> >

> >

>

[Guest guest]

Thanks Dawn! I eat tons of yogurt, fish, clam sauce, and chicken so sounds like I am ok there...what about the Ferritin you mentioned? What is thay and why important?

I wonder if lack of B12 leads to memory loss and confusion in many folks these day ... There seems to be an “epidemic!”

sue

Hi Sue,

Copied this to here from the daily letter I get from dr Weil I find

he is ususally pretty good being 'intergrated' where he takes the

best from natural and the MD realms. I could not explain it as

well. Ferritin is stored iron. Dawn

2006-07-19

Daily Tip

Getting Your Vitamin B12

B vitamins help support adrenal function, help calm and maintain a

healthy nervous system, and are all necessary for key metabolic

processes. Vitamin B12, also known as cyanocobalamin, is necessary

for DNA synthesis and affects the development of red blood cells,

normal myelination (covering) of nerve cells, and the production of

neurotransmitters. Deficiencies of B12 can lead to memory loss,

confusion, fatigue, and even dementia.

Animal-derived foods, including dairy, eggs, meat, fish and poultry

are the only food sources of B12, so this important vitamin is often

deficient in vegan diets. Good sources are clams, herring, cooked

oysters and wild Alaskan salmon. To help meet daily needs, Dr. Weil

recommends a B-complex supplement that contains a full spectrum of B

vitamins, including thiamine, B12, riboflavin and niacin.

What's your view about this tip's subject? Share your thoughts in

the DrWeil.com Community.