new to the group

[Guest guest]

I just got my diagnosis in January, and I have some bad days, too.

I've been so busy getting surgery and treatment that It almost feels

like the cancer better be on the run, 'cos I'm onto it, and it's not

gonna win!

I feel like someone's weird science project most of the time.

You're not alone. I think most of us feel strange and kind of apart

from the rest of the world. We have each other :-)

Joanne

Dx Pap carcinoma 1/29/03

TT 2/11/03

Cytomel 25 mcg 2/14/03 - 3/20/03

Hypo hell

Start LID 3/27/03

RAI ablation 150mCi 4/28/03

Synthroid 100mci, Cytomel 25mcg 5/1/03

> hello. I have had tyroid cancer for almost a year now. i want to

know

> how some others are doing with their disease. I am a 26 year old

> female. Having ahard time coping still. Please help!!!!!

[Guest guest]

Thanks for the insurance reassurance elaine. At the moment I do not

even know that I have a problem, just concerned that I do and from

what I have researched so far on the net, it is a disease that I do

not want to have. Getting to the point of having the biopsy done will

not be an easy task nor do I see it happening anytime in the near

future, but if it does happen and I do not get good news, I am afraid

going forward from there will be an even tougher task. I do not know

how any of you have managed to do what you have done so far, you are

all saints.

> If you do get another job which I assume you will, I don't believe

they can ask

> about preexisting conditions when you sign up for insurance. I've

never had

> to disclose anything (although I didn't have " thyca " at the time)

so that would

> take care of the insurance issue. I don't mean to preach but

please take care

> of yourself. This is a disease when caught early or even in later

stages can

> be treated. PLEASE don't let it go. I wish you the very best.

[Guest guest]

In a message dated 3/28/2005 1:32:07 P.M. Eastern Standard Time,

em2_mom@... writes:

The progressive loss doesn't seem to be stopable and I feel I should

be able to " do " something. We're learning sign language and

continuing to be very verbal with him. I've been looking for a

support group with no luck. We're also looking into grants and

funding for hearing aids since our insurance company won't cover one.

Any ideas there would be helpful. Thanks for reading, Johanna

Johanna,

Welcome to our group. You've found a very supportive group of people here.

This list is for and about parenting D/HOH (deaf/hard of hearing) kids. We

share all kinds of things. Help with the laws and getting services from school

to trying to figure out how to keep aids on little babies (toupe tape seems to

be the most common).

All communication modalities are used by parents on this list so ask about

anything. You'll get opinions from all sides. There are parents who starting

with one form of signing and switched. Parents who started oral and ended up

with a form of sign. It's all here and the focus of this list is that there is

no one right solution. every child learns differently and ahs different

needs, so we all search and eventually find what works for our kids. The people

here will give you whatever help they can.

Oh, and we also share silly stories, moments that ave made us proud and ones

that have hurt us ... everything that goes into parenting is discussed here.

As to the urge to fix things and " do something " ... you are certainly not

alone. We've all felt that way at some point, especially at the beginning. I

used to find myself awake in the middle of the night and would go downstairs and

sit by myself and just cry. When my husband would come in and sincerely

want to know what he could do, I told him to fetch tissues and just let me cry.

There really was nothing to do except get the emotional release from crying

without my kids seeing it. Every one of us has dealt with that frustration in

some way.

I think it's just part of being a parent, comes with the territory. I live

in an area with nothing that resembles a support group ... in fact there are

very few D/HOH kids that I know of. This group can certainly help fill that

gap. Our son is a one-of-a-kind for our school district. They are clueless as

to what to do for him, so we make sure we know and tell them.

Okay .. as for grants and funding. There is a section on the Listen Up site

containing letters that people have used to petition their insurance companies

to pay for the aids as well as the usual medical services. You'll need

support from your doctors (ENT, audiologist) to make this happen. Listen Up's

areas are great resources when fighting for just about everything your kid

needs.

Take some time and look around

There is an organization called Job's Daughters (the young woman's part of

the Masons) who provide hearing aids through a program called HIKE (Hearing

Impaired Kids Endowment Fund). There are chapters of Job's Daughters located all

over the US but you can apply for help through their website.

_http://www.missouriiojd.org/HIKE/_ (http://www.missouriiojd.org/HIKE/) and

their main

site: _http://www.iojd.org/_ (http://www.iojd.org/)

Also, local chapters of the Lion's Club may provide aids and help. This

depends on your local chapters, so make some calls. Our local one periodically

calls us because I know one of the women in the club.

As for my family ... I am Jill, I'm almost 45, been married to the same

furry beastie for 23 years and the mother of two. Our son is 14 and D/HOH. He

also has a progressive loss and loses about 3 dbs each time we go in for an audi

visit every 3-6 months. His loss is not predictable. He'll hit plateaus and

not lose anything for a year and then have a sudden drop. All we know it that

his loss will progress, and it can't be stopped or fixed surgically. His is a

bilateral conductive loss currently at about 50-55 dbs.

We learned of Ian's hearing loss when he was 7-8 years old, in second grade.

His lip reading and coping skills kept us fooled for quite a while. In

second grade he began struggling and though he was stupid because he couldn't

figure out what was going on in class. He didn't know everyone else could hear

the teacher. It took a while to figure everything out -- we had some really bad

doctors in the beginning. But we got him aided, got him the services he

needed and now, 7 years later, he is now a high school freshman. He's doing

really

well ... honor roll !

Our other child is , 11. She is hearing except when she chooses to

ignore us, which is often. She has all the attitude of a 16-year-old. She is

bright and capable and keeps us on our toes. Ian was/is such an easy-going kid

--

always was. I joke that if we'd had her first, I would have stopped there.

(grin) Seriously, we adore them both.

I'm an illustrator/designer and my husband is a teacher/geologist. We are a

hearing family -- Ian is the only D/HOH member anywhere in the family tree

unless we count grandparents after they turn 80. So, when we found out about his

loss, we were stunned, confused, disappointed and even frightened about what

it meant for his future. But we've all learned quite a lot and found that

it's just not that bad.

Ian's degenerative loss means that he will most likely be profoundly deaf by

the time he is a young adult. He is being raised oral because that is how he

was born -- he wasn't " mainstreamed " in school, he was simply enrolled in

the local school like very other kid. After we learned of his hearing loss,

then that " mainstreamed " name was applied to him. Our approach is oral because

that is who and what Ian is. We are following his lead.

Ian fought learning sign for a while, but recently became more interested.

So, now we have an ASL tutor who comes over once a week for classes. He says

that when the time comes, he wants a CI. But that may change. Things change all

the time, so now, we're learning to sign.

Again, welcome to the list. I know you'll find the right people here to help

with whatever you need.

Best -- Jill

[Guest guest]

Hi, Jill.

Thanks for the welcome. I am grateful to have found a group of people dealing

with the same issues. I completely realize the power of not being alone. I

started a food allergy support group near my home because I know just how

important that is.

It's to good to learn that everyone in this group is comfortable with each

other's choices. I know we all need to do what's best for our families. We're

completely oral in our house, so even when we sign it's with voice on. Our

5-year-old is comfortable signing without voice but Emmett, who is HOH, is not.

And we don't want to treat him as though he can't hear us, because he can. And,

if the time comes, Emmett is a good candidate for CI so we want to make sure he

has as much language as he'll grasp before that time, if it ever comes. We just

want to have all of our options open to us and to him because we might have

choices to make. Learning sign has been fun, too.

And, yes, that nagging need to " do " something keeps popping up. I think it's

hardest for me with this issue because I've actually been able to do something

to accommodate other things with Emmett. Food is the number one issue. We've

drastically changed our diets to ensure he's safe. And asthma is easy to control

once you know what you're dealing with. But not being able to stop this

degenerative loss? That's just not always easy to swallow. But the more I hear

how many people this happens to, the more I come to accept it. There are good

days and bad days, as you know!

Thanks for the information about the funding. The hospital we go will be helping

us track stuff down but I want to do some research too.

It's nice to meet you. Thanks again,

johanna

JillcWood@... wrote:

In a message dated 3/28/2005 1:32:07 P.M. Eastern Standard Time,

em2_mom@... writes:

The progressive loss doesn't seem to be stopable and I feel I should

be able to " do " something. We're learning sign language and

continuing to be very verbal with him. I've been looking for a

support group with no luck. We're also looking into grants and

funding for hearing aids since our insurance company won't cover one.

Any ideas there would be helpful. Thanks for reading, Johanna

Johanna,

Welcome to our group. You've found a very supportive group of people here.

This list is for and about parenting D/HOH (deaf/hard of hearing) kids. We

share all kinds of things. Help with the laws and getting services from school

to trying to figure out how to keep aids on little babies (toupe tape seems to

be the most common).

All communication modalities are used by parents on this list so ask about

anything. You'll get opinions from all sides. There are parents who starting

with one form of signing and switched. Parents who started oral and ended up

with a form of sign. It's all here and the focus of this list is that there is

no one right solution. every child learns differently and ahs different

needs, so we all search and eventually find what works for our kids. The people

here will give you whatever help they can.

Oh, and we also share silly stories, moments that ave made us proud and ones

that have hurt us ... everything that goes into parenting is discussed here.

As to the urge to fix things and " do something " ... you are certainly not

alone. We've all felt that way at some point, especially at the beginning. I

used to find myself awake in the middle of the night and would go downstairs and

sit by myself and just cry. When my husband would come in and sincerely

want to know what he could do, I told him to fetch tissues and just let me cry.

There really was nothing to do except get the emotional release from crying

without my kids seeing it. Every one of us has dealt with that frustration in

some way.

I think it's just part of being a parent, comes with the territory. I live

in an area with nothing that resembles a support group ... in fact there are

very few D/HOH kids that I know of. This group can certainly help fill that

gap. Our son is a one-of-a-kind for our school district. They are clueless as

to what to do for him, so we make sure we know and tell them.

Okay .. as for grants and funding. There is a section on the Listen Up site

containing letters that people have used to petition their insurance companies

to pay for the aids as well as the usual medical services. You'll need

support from your doctors (ENT, audiologist) to make this happen. Listen Up's

areas are great resources when fighting for just about everything your kid

needs.

Take some time and look around

There is an organization called Job's Daughters (the young woman's part of

the Masons) who provide hearing aids through a program called HIKE (Hearing

Impaired Kids Endowment Fund). There are chapters of Job's Daughters located all

over the US but you can apply for help through their website.

_http://www.missouriiojd.org/HIKE/_ (http://www.missouriiojd.org/HIKE/) and

their main

site: _http://www.iojd.org/_ (http://www.iojd.org/)

Also, local chapters of the Lion's Club may provide aids and help. This

depends on your local chapters, so make some calls. Our local one periodically

calls us because I know one of the women in the club.

As for my family ... I am Jill, I'm almost 45, been married to the same

furry beastie for 23 years and the mother of two. Our son is 14 and D/HOH. He

also has a progressive loss and loses about 3 dbs each time we go in for an audi

visit every 3-6 months. His loss is not predictable. He'll hit plateaus and

not lose anything for a year and then have a sudden drop. All we know it that

his loss will progress, and it can't be stopped or fixed surgically. His is a

bilateral conductive loss currently at about 50-55 dbs.

We learned of Ian's hearing loss when he was 7-8 years old, in second grade.

His lip reading and coping skills kept us fooled for quite a while. In

second grade he began struggling and though he was stupid because he couldn't

figure out what was going on in class. He didn't know everyone else could hear

the teacher. It took a while to figure everything out -- we had some really bad

doctors in the beginning. But we got him aided, got him the services he

needed and now, 7 years later, he is now a high school freshman. He's doing

really

well ... honor roll !

Our other child is , 11. She is hearing except when she chooses to

ignore us, which is often. She has all the attitude of a 16-year-old. She is

bright and capable and keeps us on our toes. Ian was/is such an easy-going kid

--

always was. I joke that if we'd had her first, I would have stopped there.

(grin) Seriously, we adore them both.

I'm an illustrator/designer and my husband is a teacher/geologist. We are a

hearing family -- Ian is the only D/HOH member anywhere in the family tree

unless we count grandparents after they turn 80. So, when we found out about his

loss, we were stunned, confused, disappointed and even frightened about what

it meant for his future. But we've all learned quite a lot and found that

it's just not that bad.

Ian's degenerative loss means that he will most likely be profoundly deaf by

the time he is a young adult. He is being raised oral because that is how he

was born -- he wasn't " mainstreamed " in school, he was simply enrolled in

the local school like very other kid. After we learned of his hearing loss,

then that " mainstreamed " name was applied to him. Our approach is oral because

that is who and what Ian is. We are following his lead.

Ian fought learning sign for a while, but recently became more interested.

So, now we have an ASL tutor who comes over once a week for classes. He says

that when the time comes, he wants a CI. But that may change. Things change all

the time, so now, we're learning to sign.

Again, welcome to the list. I know you'll find the right people here to help

with whatever you need.

Best -- Jill

[Guest guest]

Hello,

I see there are a few new parents, so this welcome goes out to all of you.

I'm Debbie, mom to , 6, and , 3. was diagnosed with a

bilateral moderate sloping to severe sensorinueral hearing loss when she was two

and a half. She started out with a rather large language delay, but has done so

well with her hearing aids that she is almost age approriate. She will attend

our neighborhood school this year, mainstreamed into a first grade class. She

is oral, as she has always been very vocal, but we do suppliment with sign

language to help clarify meaning and understanding. Signing is something that

also helps us when she's not wearing her aids. We have no known history of

hearing loss so in an attempt to discover why she has a loss we went through the

blood work and the CAT scan. Everything came back normal, so we also do not

know why she has a loss (although we have our own theroires). So far her loss

has remained stable, but no one can tell us for certain

that it will always be the same. is hearing (although there are some

days it's hard to tell!). He is the one that had the ear infections and ended

up having tubes put in.

This is a wonderful group of parents who are always glad to share their ideas

and experiences. All you need to do is ask the questions. We are also here

anytime you need to vent.

Debbie

Some men see things as they are and ask why. Others dream things that never were

and ask why not. G.B Shaw

__________________________________________________

[Guest guest]

Hi Suzanne - welcome! Probably most of us - if not all of us - were just where

you are at one point. It's not quite what you expecting, is it? I will say it

does get easier. I have two boys who are 13 and 10 and they both wear hearing

aids. Tom is my 13 year old. he has a severe/profound loss; Sam is 10 and has

a profound loss.

ANY hearing loss is significant so don't apologize that your daughter's loss

isn't as much as others on the list.

There are a number of good hearing aids on the market. Realize that you can

" test drive " hearing aids for I believe a period of 30 days. My younger son has

always had Phonak hearing aids. He's on his third set; my older son is on his

foruth set of hearng aids and second set of Phonaks. We've liked Phonaks - they

have a good warranty and work well with the FM systems the boys have in school.

Phonak is by no means the only good hearing aid on the market. I will say that

I've been pleased with our boys' Phonak aids and given that our audiologist is

very familiar with them, makes it easier to get them serviced and taken care of.

re: earmolds - it depends on how fast the kid grows but when my boys were

little, we'd sometimes have new molds as much as 4 times a year. Then when Sam

I believe was 6 or 7, he went an entire year with the same set!

re: funding - we had our pediatrician write our insurance company (who didn't

pay for hearing aids) asing that they review our situation and ultimately we got

them to pay for them. After the letter was sent, we received a form letter back

stating it wasn't a covered benefit (duh - I knew that!) so I called our insurer

and asked that a case manager review our request. They of course didn't want

that to happen to ultimately we prevailed and in the end, got our insurer to

pay. They now pay for hearing aids for kids which has been wonderful. A copy

of the letter we wrote is on Kay's website here:

http://www.listen-up.org/haid/haidfund2.htm

In general, we've bought new aids for our boys every 3-4 years. Since it's the

earmold that changes, the child doesn't outgrow the hearing aid unless their

hearing changes.

Our school district pays for our boys' FM systems. For any child who wears

hearing aids - doesn't matter if their loss is mild or profound - an FM system

is a *must*. Hearing aids amplify all sounds; the FM puts the teacher's voice

louder than the other noises and it makes a huge difference.

Hope this helps!

Take care

Barbara

--- You wrote:

Our daughter Grace is 5 years old and has just been diagnosed with a slight

sensorineural hearing loss in both ears a couple of weeks ago. She is adopted

from China. The audiologists tell us they think the loss is from birth and that

it is about a 30% loss. I know many of you are dealing with much worse

situations, but that sounds more than slight to me. All I know is that I almost

cried in front of the audiologist when my daughter asked her, " you mean I will

have to wear hearing aids for the rest of my life? " This has been hard.

We are overwhelmed with tests (catscan, ophthalmologist, genetics) and at the

same time we are in the process of buying aids. I know you have all been

through this and that's why I'm so glad to have found this group. I looked back

at

some of the posts in the hopes that I wouldn't be asking really stupid

questions, but here I go. It sounds like Phonak is the way to go. That's what

our

audiologist has prescribed and we are checking on prices. Does anyone have a

better suggestion on manufacturer? With regular ear growth, how long do the ear

molds last? How about the aids? Is there any assistance for middle income folks

who's insurance doesn't cover the cost of the aides? Should we ask for loaner

aids before purchasing our own? Don't all young children wear pediatric ear

hooks so you don't have to buy new aids as fast as the ears grow? Are digital

aids just for severe or profound loss or can any loss benefit from them? Grace

will start Kindergarten in a couple of weeks. Our audiologist is recommending

we buy an FM system along with the aids. That is going to add another

$1500-$2000 to the equation. Are FM systems provided in your children's

classrooms?

Does it make all the difference that the audiologist says it will? I'm sorry for

all the questions. I'm just overwhelmed like I said...and sad. It's all so

new to us.

--- end of quote ---

[Guest guest]

Hi Suzanne,

The beginning is such a roller coaster. You are trying to learn things as

fast as you can so that you can learn what Grace will need. At the same time

you're dealing with the emotional side of it. It can be overwhelming. So know

that there are no stupid questions. You need to learn and discover just as all

of us did. We are here for you anytime that you may have a question or just

need to vent.

We started on this journey with my daughter when she was 2 1/2 years

old. She was diagnosed with a moderate sloping to severe hearing loss and

received aids about a month before her 3rd birthday. She is now 6 and will be

entering 1st grade in a mainstream class.

didn't have a lot of language at the time of her diagnosis (we

discovered her loss because of her large language delay). She was and still is

a very easy going child. The subject of her wearing the aids has only been

brought up by her a couple of times, but when it does it just tears my heart up.

I do my best to explain that she needs to wear the aids because she needs help

to hear. I also have become involved with a playgroup for other deaf and hard

of hearing children so that she can see that she isn't the only person that

wears hearing aids. I have to travel about an hour to get there, but feel that

it is very important for her.

I remember well the first two years. We were always going to some

appointment. We had appointments with audiologists, ENTs, her pediatrician,

speech therapist, not to mention the different testing that we also had done.

We now only visit her audi two times a year...or if we have a problem (aids need

repair or a new set of molds) and are working on getting speech again.

Phonax is certainly a good company to purchase aids from, but there are others

out there that are just a good. We started with Siemens Triano aids. They

served very well, but our currently audi didn't feel that they were

giving her enough access to the higher frequency sounds. We are currently

trialing a pair of Oticon Adaptos. We have had them for 4 days, but since

is so laid back, she isn't giving us much feedback about them. We have

30 days to say we want to keep them or not. These are the ones that our audi

recommended. She would have just as easily let us try another type or brand if

we had asked. I trust her and her recommendation. She is a pediaritc

audiologist and is use to aiding young children and knowing how their needs are

different from adults. She explained to me why she chose this aid over

others. There are aids out there with more advanced technology, but at this

time, we felt that couldn't really benefit from the technology that

those aids offered. The aids we are trialing are programmable digitals.

They have two program settings on them as well as the t-coil. The programs are

changed by flipping a switch on her aid. The one with the more advanced

technology only had a button that you push to change the programs. We would be

depending on to change the programs to the appropriate setting and we

don't feel that at 6 she would be able to do that. If she had suggested an aid

I had never heard of, I may have questioned it more, but I didn't feel that it

was neccesary.

's ear molds need changing as often as her shoe size changes, which as she

has gotten older, doesn't happen as much. Her last set of molds lasted 9

months. We used to have the solid molds, but our audi this time suggested that

we get the kind with a hole in the middle. She said that it would allow

to better hear lower frequency sounds. I've seen this type of mold more and

more in the past few years. At first thought they were a little wierd,

but she has gotten use to them. Pediatric ear hooks allow the aid to sit

better on a young persons ear. Aids can last anywhere between 3 - 5 years, as

long as the degree of loss doesn't change. We had our first set of aids for 3

1/2 years. Although 's hearing loss hasn't really changed, the technology

has and that was one of the reasons we are getting new aids.

About assistance for the aids. All states offer some type of program to help,

although you usually need to qualify financially for it. We live in Illinois

and get assistance from a program called " Department of Specialized Care for

Children " . Other states call it other things. There are also some national

philathropic organizations that may be able to help. I beleive that you will

find some of the info on the Listen-up site

I believe that an FM system is a must for all children in school. The school

should provide one for school use. You may be able to use it off of school

grounds, but that varies from district to district. Have your audi and ENT

write letters to your district asking for them to purchase one on Grace's

behalf. Do not let them talk you into using an old auditory trainer that they

may have from years ago. The technolgy has come such a long way since then and

the FM provides a much clearer sound directly into Grace's ear through her

hearing aid. Our district didn't bat an eye when we asked them to purchase the

FM. We have been very lucky that our district has done just about everything

that we have asked for. That could be because she is the first child in our

district, in a long time (over 10 years) that needs to wear hearing aids. If

you want to purchase one for home use, you can, but as you mentioned the costs

add up quickly.

I hope that I didn't confuse and that I was able to answer your questions. If

you have any additions questions or are looking for specific information, just

let us know. I have saved in my favorites a whole bunch of hearing loss related

web sites.

Debbie, mom to , 6, moderate SNHL and , 3, hearing....not always

listening.

Some men see things as they are and ask why. Others dream things that never were

and ask why not. G.B Shaw

__________________________________________________

[Guest guest]

Hi Suzanne,

Welcome to the group. I'm Kerry, mom to Hadley, almost 4, who has been

wearing aids since six months for her severe bilateral loss. We do

Auditory-Verbal Therapy; Hadley has been in a regular preschool for the last

year and is doing great.

You've received great recommendations so far; here are a few more for you:

Ask your audiologist about local resources for paying for/contributing to

aids. Often they know of them, but don't mention it in the whirl of those

first appointments. Contact your local Lion's Club; I've rarely heard of a

family that has been turned down. Contact your state rep's office; our

local guy has been great at connecting families with agencies or individual

philanthropists. Our audiologist allows payment plans as well.

Hadley wore pediatric ear hooks until age 2; they were just to help keep the

larger aids on her tiny head. At that time, we invested in a second set of

aids that were a better match for her. The pedi ear hooks only work for

some hearing aids (although more new models are compatible with them). We

get new earmolds frequently, usually every 6-8 weeks (the shape of Hadley's

canal and outer ear is such so that if she grows a little, her molds gap a

lot). We usually get free remakes for three months, so we're only paying

for molds 3-4 times a year.

There have been families who have worked successfully with their parochial

school around payment of an FM system. Often, when the schools find out

that this is the difference between paying tuition or buying the FM, they'll

find a middle ground. Just because a school doesn't have to pay for it

doesn't mean it won't. Carol Flexer has lots of great, current information

on the importance of FM systems; just Google her name and you'll get links

to many of her articles. Her site is

http://www.uakron.edu/colleges/faa/depts/sslpa/faculty/Flexer.php

You also might want to find (in all of your spare time!) the book " Not Deaf

Enough " by PAM Candlish. You can read excerpts and lots of stuff posted by

the author on her website, http://www.hardofhearingchildren.com/. There are

lots of great books out there, but this one is especially good for parents

of kids with mild/moderate losses, as it is written with this group in mind

(hence the title).

Good luck with all of these decisions you are making, and keep asking any

questions that pop in your head.

Kerry

New to the group

Our daughter Grace is 5 years old and has just been diagnosed with a slight

sensorineural hearing loss in both ears a couple of weeks ago. She is

adopted

from China. The audiologists tell us they think the loss is from birth and

that

it is about a 30% loss. I know many of you are dealing with much worse

situations, but that sounds more than slight to me. All I know is that I

almost

cried in front of the audiologist when my daughter asked her, " you mean I

will

have to wear hearing aids for the rest of my life? " This has been hard.

We are overwhelmed with tests (catscan, ophthalmologist, genetics) and at

the

same time we are in the process of buying aids. I know you have all been

through this and that's why I'm so glad to have found this group. I looked

back at

some of the posts in the hopes that I wouldn't be asking really stupid

questions, but here I go. It sounds like Phonak is the way to go. That's

what our

audiologist has prescribed and we are checking on prices. Does anyone have a

better suggestion on manufacturer? With regular ear growth, how long do the

ear

molds last? How about the aids? Is there any assistance for middle income

folks

who's insurance doesn't cover the cost of the aides? Should we ask for

loaner

aids before purchasing our own? Don't all young children wear pediatric ear

hooks so you don't have to buy new aids as fast as the ears grow? Are

digital

aids just for severe or profound loss or can any loss benefit from them?

Grace

will start Kindergarten in a couple of weeks. Our audiologist is

recommending

we buy an FM system along with the aids. That is going to add another

$1500-$2000 to the equation. Are FM systems provided in your children's

classrooms?

Does it make all the difference that the audiologist says it will? I'm sorry

for

all the questions. I'm just overwhelmed like I said...and sad. It's all so

new to us.

Thanks for any advice you can give.

Suzanne

[Guest guest]

Hi Tessa! Welcome!

My son, 6, had his first implant last year and got his second

implant this March.

Feel free to email me any questions you have!

[Guest guest]

Hi Robin,

Welcome to the group. I'm 27, found out I'm hypothyroid last September. I will let others who are more knowledgeable about the cancer side of thyroid problems answer your questions, but I thought I'd just say a quick hello.

Yes, you need to get copies of your lab results and also the lab's established ranges of "normal." Feel free to post them to the group, they love going over labs and can help you figure out what everything means. Most likely, they'll instruct you (as they did me and many others) to request to have your Free T3 checked, as well as Free T4 and TSH. You can learn more about how your body is handling and processing thyroid hormone with the Free T3 and Free T4 tests than you can by just looking at the TSH alone. The Free T4 tests for the amount of thyroid hormone floating around that's available to be converted in your blood to the active form, T3. The Free T3 test shows how much of the active thyroid hormone (T3) you have available in your blood stream to use. TSH measures how loudly your pituitary is asking your thyroid to make more thyroid hormones, so you see, checking just TSH is an indirect approach.

If you don't feel well, if you're still tired, then it's very likely you need more thyroid hormone. If that doesn't fix it, you would then look into thing such as low adrenal function, low iron (which could easily be tested along with your thyroid tests above; the adrenal test is a saliva test), and probably any number of others, but those seem to be the most common that I've read about.

Of course, the cancer stuff probably has it's own hoast of other possible problems or complications, but like I said, I'll leave that to the ones who are "in that same boat" so to speak, to answer for you more specifically.

You're in the right place for help, just give everyone a few days to read your post and respond, especially since it's a weekend.

(stewlis)

New To the Group

Hi,

I found out I had thyroid cancer at 23. I'm now 36 and can honestly tell you that as an adult, I don't know what its like to feel good and healthy. I know, from reading other posts, that I need to get my test results from my doctors office. I have recently changed to a new Endo and have hope that she will be able to help me feel better.

Any of you on the list who have had cancer, do you ever feel good? Can you get past the tired, rundown, and weak feeling? Does your immune system always seem to be weak?

Thanks for your help,

Robin"The purpose of life, after all, is to live it, to taste experience to the utmost, to reach out eagerly and without fear for newer and richer experiences." Eleanor Roosevelt

[Guest guest]

Hi Robin, and welcome to the list!

My name is Liz, and I was diagnosed with hypothyroidism a year ago.

Although I don't have thyroid cancer, I do have those days where I don't feel my best.

In the short time that I've been with this group, I can honestly tell you there are many caring and supportive people here. Hang in there!

Liz

[Guest guest]

Ok, I got my most recent test results.

Reference Range

Free T4 1.1 0.8 - 1.8

Free T3 526 230 - 420

TSH .02 .40 - 5.50

At the time this was done I was taking 3 GR of Armour Thyroid.

She has since changed me to .175 MG of Synthroid.

I have been on Synthroid (various doses) for the last 12 years with little or no improvement. I told her I was willing to try it again.

I always take it at least an hour before eating in the mornings.

Any input would be great!

Robin"The purpose of life, after all, is to live it, to taste experience to the utmost, to reach out eagerly and without fear for newer and richer experiences." Eleanor Roosevelt

[Guest guest]

Robin, why is she changing you back?? How did you feel on it.........just seems strange that's all ....your Free T3 is over the range but from what I've read that's not necessarily a bad thing..............Meleese in Oz xxx

----- Original Message -----

From: Calico

Ok, I got my most recent test results.

Reference Range

Free T4 1.1 0.8 - 1.8

Free T3 526 230 - 420

TSH .02 .40 - 5.50

At the time this was done I was taking 3 GR of Armour Thyroid.

She has since changed me to .175 MG of Synthroid.

I have been on Synthroid (various doses) for the last 12 years with little or no improvement. I told her I was willing to try it again.

I always take it at least an hour before eating in the mornings.

Any input would be great!

Robin"The purpose of life, after all, is to live it, to taste experience to the utmost, to reach out eagerly and without fear for newer and richer experiences." Eleanor Roosevelt

[Guest guest]

I was willing to try Synthroid again because I feel like I finally have a doctor who cares how I feel and what I think. Maybe with us working together we can find the right dose.

Re: New To the Group

Robin, why is she changing you back?? How did you feel on it.........just seems strange that's all ....your Free T3 is over the range but from what I've read that's not necessarily a bad thing..............Meleese in Oz xxx

----- Original Message -----

From: Calico

Ok, I got my most recent test results.

Reference Range

Free T4 1.1 0.8 - 1.8

Free T3 526 230 - 420

TSH .02 .40 - 5.50

At the time this was done I was taking 3 GR of Armour Thyroid.

She has since changed me to .175 MG of Synthroid.

I have been on Synthroid (various doses) for the last 12 years with little or no improvement. I told her I was willing to try it again.

I always take it at least an hour before eating in the mornings.

Any input would be great!

Robin"The purpose of life, after all, is to live it, to taste experience to the utmost, to reach out eagerly and without fear for newer and richer experiences." Eleanor Roosevelt

[Guest guest]

>

> Ok, I got my most recent test results.

> Reference Range

> Free T4 1.1 0.8 - 1.8

> Free T3 526 230 - 420

> TSH .02 .40 - 5.50

>

> At the time this was done I was taking 3 GR of Armour Thyroid.

> She has since changed me to .175 MG of Synthroid.

>

> I have been on Synthroid (various doses) for the last 12 years

with little or no improvement. I told her I was willing to try it

again.

>

> I always take it at least an hour before eating in the mornings.

>

> Any input would be great!

>

> Robin

> " The purpose of life, after all, is to live it, to taste

experience to the utmost, to reach out eagerly and without fear for

newer and richer experiences. " Eleanor Roosevelt

>

Do you have labwork from being on Synthroid so that we have

something to compare with? Thyroid meds unfortunately are not a one

size fits all and from posts I have seen where people are feeling

better most seem to be on a combination Synthroid/Armour.. I will

see if I can find some links as to why..

The main idea of thought is that Armour is in a higher ratio than

normally found in a human body, Synthroid is in a lower (0) ratio

then found in humans..

Synthroid relies on the bodies ability to convert T4-T3.. Armour

contains T4 and T3..so by using both meds you give the body enough

T4 to convert to T3 and enough T3 so the body has the ability to

convert..

Kats3boys

[Guest guest]

Robin.... did you take your Armour before your blood draw??

Your numbers are really high...

How were you feeling??

How are you feeling now with your dose cut?

Topper ()

On Mon, 8 May 2006 18:47:08 -0500 "Calico" writes:

Ok, I got my most recent test results.

Reference Range

Free T4 1.1 0.8 - 1.8

Free T3 526 230 - 420

TSH .02 .40 - 5.50

At the time this was done I was taking 3 GR of Armour Thyroid.

She has since changed me to .175 MG of Synthroid.

I have been on Synthroid (various doses) for the last 12 years with little or no improvement. I told her I was willing to try it again.

I always take it at least an hour before eating in the mornings.

Any input would be great!

Robin"The purpose of life, after all, is to live it, to taste experience to the utmost, to reach out eagerly and without fear for newer and richer experiences." Eleanor Roosevelt

[Guest guest]

It's a GREAT thing to have a doc that works WITH you.... Not everyone does well on synthetic, not everyone does well on natural, some do best on a combo of the two.... the most important thing is to find what works best for you and having a doc that is willing to work with you to find that is a good thing...

.... but..... I'm really wondering why she just bashed the natural and switched you to synthetic...

She did take the correct tests... that's a good thing...

Topper ()

On Mon, 8 May 2006 20:19:47 -0500 "Calico" writes:

I was willing to try Synthroid again because I feel like I finally have a doctor who cares how I feel and what I think. Maybe with us working together we can find the right dose.

[Guest guest]

Yes, I took it the morning of the blood draw. It was drawn late in the afternoon.

I feel terrible, but I've always felt this way. I don't feel any different now than I did with Armour.

I haven't felt well in years. I work every day and manage to function, but sometimes I think I've just gotten used to ignoring how I feel.

The doctor I have now seems to understand this. She is a Endo who also has diabetes. Maybe this helps her have a better perspective.

Robin"The purpose of life, after all, is to live it, to taste experience to the utmost, to reach out eagerly and without fear for newer and richer experiences." Eleanor Roosevelt

Re: New To the Group

Robin.... did you take your Armour before your blood draw??

Your numbers are really high...

How were you feeling??

How are you feeling now with your dose cut?

Topper ()

On Mon, 8 May 2006 18:47:08 -0500 "Calico" writes:

Ok, I got my most recent test results.

Reference Range

Free T4 1.1 0.8 - 1.8

Free T3 526 230 - 420

TSH .02 .40 - 5.50

At the time this was done I was taking 3 GR of Armour Thyroid.

She has since changed me to .175 MG of Synthroid.

I have been on Synthroid (various doses) for the last 12 years with little or no improvement. I told her I was willing to try it again.

I always take it at least an hour before eating in the mornings.

Any input would be great!

Robin"The purpose of life, after all, is to live it, to taste experience to the utmost, to reach out eagerly and without fear for newer and richer experiences." Eleanor Roosevelt

[Guest guest]

Topper, my guess is she did that to drop the T3 since it WAS so high and to get her back on just T4...

Sue

It's a GREAT thing to have a doc that works WITH you.... Not everyone does well on synthetic, not everyone does well on natural, some do best on a combo of the two.... the most important thing is to find what works best for you and having a doc that is willing to work with you to find that is a good thing...

.... but..... I'm really wondering why she just bashed the natural and switched you to synthetic...

She did take the correct tests... that's a good thing...

Topper ()

On Mon, 8 May 2006 20:19:47 -0500 " Calico " writes:

I was willing to try Synthroid again because I feel like I finally have a doctor who cares how I feel and what I think. Maybe with us working together we can find the right dose.

[Guest guest]

hello all iam new to the group i was invited to join by a member of my

hysterectomy support group so here goes . I had went to my dr for the

way iwas feeling she decided to test my blood to see if iwas anemic

everything was ok that way but she said that my thyroid showed up to

be borderline hypo or hyper i dont know because she didnt specify .

All i know that iwas tired of being depressed , not only tired but

down right exausted , anxious , felt like ididnt belong any where and

even though i was tired wasnt sleeping very well and having odd

nightmarish type dreams waking up like i hadnt slept at all and felt

like iwas in ahole so deep id never find my way out so she wanted me

back in for another blood test to recheck my thyroid and she said it

was fine that i didnt need medication well i decided to go see my

pharmacsit that helps me with my natural hormone therapy and told her

about my thyroid being border line so she did an iodine test on me and

found me to be defficient and started me on a homeopathic drops called

thyrodine which has help me so much but iguess my fear is that im

going to find myself back to the way iwas feeling even though iam

feeling soso much better does any one have any advice if so i would

love to hear from you thankyou cindy lou

[Guest guest]

Hi lou, This is Tina I just wanted to welcome you to the group and tell you hi. Tinapinkmagicmountain wrote: hello all iam new to the group i was invited to join by a member of my hysterectomy support group so here goes . I had went to my dr for the way iwas feeling she decided to test my blood to see if iwas anemic everything was ok that way but she said that my thyroid showed up to be borderline hypo or hyper i dont know because she didnt specify . All i know that iwas tired of being depressed , not only tired but down right exausted , anxious , felt like ididnt belong any where and even though i was tired wasnt sleeping very well and having odd nightmarish type dreams waking up like i hadnt slept at all and felt like iwas in ahole so deep id never find my way out so she wanted me back in for another blood test to recheck my thyroid and she said it was fine that i didnt need medication well i decided to go see my pharmacsit that helps me with my natural hormone therapy and told her about my

thyroid being border line so she did an iodine test on me and found me to be defficient and started me on a homeopathic drops called thyrodine which has help me so much but iguess my fear is that im going to find myself back to the way iwas feeling even though iam feeling soso much better does any one have any advice if so i would love to hear from you thankyou cindy lou

[Guest guest]

Sorry lou that you had to come in in the middle of that but , i do need to say i love this group so much and with out these people and the opinions and advice where in the world would alot of us be, and they are just that opinions. I am sorry I am not sure if Topper or anyone else got back to you yet but they will first of all ask for your test results and ranges then they will look at the numbers and people that know things about it will give their opinion and let you know hwat has worked for them and you can give it a whirl or say no thanks I would rather try something else butyou know that your in the hysterectomy support group you know what it is all about. I hope this helps you there is so much information I tried to read it all at once and it just bogged me down had to read it all a few more times to really understand a bit of what i was reading and I will most likely go read it again then it will hit me like a ton of bricks

and I will think Tina you dumb blonde that was easy to understand. I am still learning about numbers so i let others answer that. I just read and take it all in . Tinapinkmagicmountain wrote: hello all iam new to the group i was invited to join by a member of my hysterectomy support group so here goes . I had went to my dr for the way iwas feeling she decided to test my blood to see if iwas anemic everything was ok that way but she said that my thyroid showed up to be borderline hypo or hyper i dont know because she didnt specify . All i know that iwas tired of being depressed , not only tired but down right exausted , anxious , felt like ididnt belong any where and even though i was tired wasnt sleeping very well and having odd nightmarish type dreams waking up like i hadnt slept at all and felt like iwas in ahole so deep id never find my way out so she wanted me back in for another blood test to recheck my thyroid and she said it was fine that i didnt need medication well i decided to go see my pharmacsit that helps me with my natural hormone therapy and told her about my

thyroid being border line so she did an iodine test on me and found me to be defficient and started me on a homeopathic drops called thyrodine which has help me so much but iguess my fear is that im going to find myself back to the way iwas feeling even though iam feeling soso much better does any one have any advice if so i would love to hear from you thankyou cindy lou