Advice needed

[Guest guest]

I think early intervention is a wonderful thing and a curse. It is

very intrusive and I don;'t think they told me much (a few things

maybe) that I didm't already know. If you have raided other children

my advice would be to get the training and do it yourself for the most

part.n I think that ther " experts " come in and can many times

undermine the parent and her/his sense of competency. I remember one

woman at a support group cring and saying she felt guilty all the time

like she was doing everything wrong. I told her for every therapist

she had she would get a differnet opinion and a differnet approach to

working with her child and that she should glean what she feels is the

best and throw the rest away. you are your child's parent and that gut

instinct counts for much. i remember a spoeech therapist telling me

not to feed Micah pasta because " Downs kids " have sensorty issues with

that kind of food; WAY WRONG!!! I didn't listen and it is Micah's

absolutely favorite food. My best advice is to love your child.

Listen to what they say and " glean the best and throw the rest

away'!!!!!

Loree

Advice needed

Ok, so I know I haven't been on here long, but as I begin my jou

rney

with

Noah and working with the various organizations, I figured I'd throw

out a

request for some advice to hopefully obtain the best results for my

son.

I have a meeting with Nevada Eearly Intervention Friday to do our intake

and develop our " agreement " .

I have heard horror stories about things that they recommend or add in

there that in ignorance parents agree to and are then bound by.

I was hoping that with all those that have blazed this trail prior to me

might be able to provide me some suggestions of things to include or not

include.  Specific wording etc.

I'm running into some interesting conflicts like my pediatrician says

not

to start physical therapy yet.  The NICU specialist said I should start

them immediately and do them every week.  And Early intervention told me

on the phone they would plan on doing it once a month (if that).  They

also said that it is a parent education model where they will show us

the

therapy to do for our son.  Is this a normal experience?

I see with just a short time on this list, that frustration is and will

be

many, and obviously it is beginning for me.

I'll take all the advice you wanna give.

Thanks.

[Guest guest]

Hi,

Early Intervention told you on the phone they would do PT once a month, and

they haven't even done an intake yet?  Have they even seen Noah?  I don't see

how they can tell you what they are going to do without having evaluated him

yet.

I will share with you my experience after was born, to the best of my

memory.  And if it ends up being long, I'll apologize now :0)

was born in Pekin, Illinois and you would have thought I gave birth to an

alien.  Her pediatrician told me that would never be smarter than an 8

year old child.  When I took her for one of her visits, we saw his partner and I

asked what low muscle tone was...he held up in the air and said, Oh she

has great tone...see how she holds her arms and legs straight as I hold her up? 

If her tone was bad, she would dangle her arms and legs.  Thus, my painful

journey in trying to figure out what the heck low muscle tone was...I just

couldn't grasp the concept.  When I went to 's intake appointment, the case

manager was very nice and she started explaining that would be evaluated

and then the therapists would make recommendations on what therapies was

eligible for, etc.  She then went on to inform me that I could

institutionalize .  I will never forget this...I looked at her and said

" you can't have my baby " , and

she said that she was obligated to offer me the option of having put in

an institution.  I asked her if she was reading from a script or something

because anyone with any common decency would not ask a new mother if she would

like to relinquish her child into the fine care of the state of Illinois.  I

asked her if she was crazy, considering I was ready to come across the desk and

strangle her for even suggesting that my child should be in an institution, and

did she realize that it had only been 6 weeks since was born and my

hormones were whacked...she apologized, but still, I was horrified.  I signed

the papers for to be evaluated and she scheduled the appointments.  She

also suggested that we go see a Dr. , he was a specialist in Down

syndrome and the best in the country.  I agreed and she made an appointment. 

She also sent us for 's hearing test, an ABR I believe.  I asked her if

there were parents who

agreed to have their child put in an institution in 2001 and she said yes.  So

I apologized for wanting to strangle her.

had PT every two weeks for an hour, Speech every two weeks for an hour and

we went to see this Dr. .  He spent a good amount of time with her,

she was about 2 1/2 months old, and he told me basically the same thing her

pediatrician did, that her cognitive development probably wouldn't be higher

than a third grader.  I asked him how he could come to that conclusion? 

Everything I had read said that by the time your child is 5, you have a pretty

good idea of what their delay will be... was only 2 1/2 months old.  He

said he was generalizing, so I told him that perhaps he should change his title

from specialist to generalist...I was mad!  I told my case manager that maybe

she should consider other options to parents besides Dr. , he seemed to

have a one-size fits all opinion.  I also had a visit from the health

department.  Now, I am from Texas, and the only reason the health department

would ever come and visit your house

was if you had an infectious disease or if your swimming pool is green.  This

woman freaked me out because I couldn't figure out what the heck she wanted

from me.  She said that was " atypical " and that when there is an

" atypical " birth, the health department is called in to offer assistance.  I

asked her if she had any information on Down syndrome, and she did not, nor did

she think there was any in her office.  I asked her if she thought Down syndrome

was contagious and she said no...I asked her if she was there to make sure my

house was clean or appropriate to raise a baby with Down syndrome and she said

no.  She was there for support, but she was really sorry, she didn't have any

information on Down syndrome.  I told her I appreciated the " visit " , but that I

had a baby to play with and unless she had something helpful to to offer,

we really didn't need another person to make appointments with.  Needless to

say, she didn't come

back, but she sure freaked me out.  In less than a year, we moved back to Texas

and had to do the Early Intervention stuff all over again.  This time was much

better.  Each therapist came to our home, did the evaluation for PT, speech and

developmental, and then all three came together to sit down and make a plan for

.  She had PT, speech and developmental once a week.  We contacted Dr.

Lawrence Leichtman out of Virginia Beach and he became 's specialist.  He

used to travel to Houston twice a year, but is no longer doing this.  I learned

so much from each therapist, and I did depend on them to help write 's

goals.  My biggest thing for is this:  I know (or knew) she was going to

learn how to crawl, walk, jump, skip, etc., what my main concern was that she be

able to speak and be understood and have the ability to comprehend and problem

solve.  I bought many books on teaching children with Down syndrome and I use

them

all the time.  It takes time to get to know your child, so don't be afraid of

your initial Early Intervention program.  As you get to know Noah and figure out

where he needs the most help, you will get better at asking for the right

things.  You can make requests to have his services changed at any time. 

does Targeted Nutritional Intervention (TNI) and takes Piracetam.  None of her

therapists even knew what this was, and I had no idea that if I placed a rolled

up burp cloth under each of her shoulders, it would keep them from rolling back

and she could lift her arms to reach out for the toys hanging above her....it's

a give and take.  I have two older boys, but after was born, I had to buy

a book on regular development because I had no idea how a child is supposed to

develop, in what stages, etc.  My boys just did it.  I figured I better learn as

much as I can about Down syndrome, whether it applied to  or not and I

better learn how she is " supposed " to be developing so I could make good

choices for her.  I read and research all the time, it's part of my personality

and arming myself with as much information as I can helps me make hard

decisions.

On the flip side, please remember this.  Enjoy your baby!  I spent too much time

freaking out when I had this precious little girl right there.  I gave myself

permission to grieve for the child I thought I was going to have, and it took me

a year to see my daughter first and Down syndrome second.  I can remember asking

God " what in the world did I do to deserve this? " (I was asking the question as

a poor, pitiful me question).  One day, He answered me back...He said ,

you are asking the right question, just in the wrong way....and then I got it. 

I realized I was blessed, I was lucky and I began asking the same question, but

in a different way... " what in the world did I do (that was so wonderful) to

deserve this? "   It was awesome, because it made me realize that I had a daughter

first.

These are just my personal experiences.  The one I hope you take to heart is the

last one, enjoy your baby!

  Moyers

Kay Independent Beauty Consultant

832-816-7992

www.marykay.com/jendmoyers

________________________________

From: " dboruchowitz@... " <dboruchowitz@...>

Sent: Monday, June 8, 2009 1:53:40 PM

Subject: Advice needed

Ok, so I know I haven't been on here long, but as I begin my journey with

Noah and working with the various organizations, I figured I'd throw out a

request for some advice to hopefully obtain the best results for my son.

I have a meeting with Nevada Eearly Intervention Friday to do our intake

and develop our " agreement " .

I have heard horror stories about things that they recommend or add in

there that in ignorance parents agree to and are then bound by.

I was hoping that with all those that have blazed this trail prior to me

might be able to provide me some suggestions of things to include or not

include.  Specific wording etc.

I'm running into some interesting conflicts like my pediatrician says not

to start physical therapy yet.  The NICU specialist said I should start

them immediately and do them every week.  And Early intervention told me

on the phone they would plan on doing it once a month (if that).  They

also said that it is a parent education model where they will show us the

therapy to do for our son.  Is this a normal experience?

I see with just a short time on this list, that frustration is and will be

many, and obviously it is beginning for me.

I'll take all the advice you wanna give.

Thanks.

[Guest guest]

,

Have you seen the forms? If not, I would suggest getting a blank copy just so

you can familiarize yourself with the format. Do you know any other parents who

might be willing to share a copy of their child's completed form? That way you

can get an idea of what to expect as far as wording etc.

If I understand correctly, the Early Intervention people want to develop a

therapy plan for your son. How long is that plan to be in place? Every state

is different but just as an example, our plan was good for one year. Progress

was reviewed annually and new objectives were created. Also, the team could be

called together before the year was up if we asked for an interim meeting. The

key was knowing to ask.

The reason you hear horror stories is because those are the ones that people

tell. Chances are there are just as many positive experiences, they just don't

make as good of a tale. That doesn't mean that the horror stories aren't

valuable. Listen and learn from them. Just also know that your experience

doesn't have to be Horror Story II.

You also don't have to sign the agreement that day. It can be kind of a

whirlwind meeting - so many professionals whizzing through their specialty,

papers shuffled in front of you, new terms and acronyms thrown about. It's easy

to feel 'taken along for the ride' rather than like an active participant. If

you're feeling any pressure or even the slightest bit uncertain, tell them that

you want to think about it. They'll kick and moan and complain about this or

that - NOT YOUR PROBLEM. Don't sign, schedule another meeting and take the

paperwork home to review in your own time.

>

>

>

> Ok, so I know I haven't been on here long, but as I begin my journey with

> Noah and working with the various organizations, I figured I'd throw out a

> request for some advice to hopefully obtain the best results for my son.

>

> I have a meeting with Nevada Eearly Intervention Friday to do our intake

> and develop our " agreement " .

>

> I have heard horror stories about things that they recommend or add in

> there that in ignorance parents agree to and are then bound by.

>

> I was hoping that with all those that have blazed this trail prior to me

> might be able to provide me some suggestions of things to include or not

> include.  Specific wording etc.

>

> I'm running into some interesting conflicts like my pediatrician says not

> to start physical therapy yet.  The NICU specialist said I should start

> them immediately and do them every week.  And Early intervention told me

> on the phone they would plan on doing it once a month (if that).  They

> also said that it is a parent education model where they will show us the

> therapy to do for our son.  Is this a normal experience?

>

> I see with just a short time on this list, that frustration is and will be

> many, and obviously it is beginning for me.

>

> I'll take all the advice you wanna give.

>

> Thanks.

>

>

>

>

[Guest guest]

Okay, here's my input....

I'm an EI provider. I work as an occupational therapy practioner. I switched to

this field after my daughter Karrie, who has DS, started EI.

As in every field, there are good therapist and not-so-good. In IL, the parent

chooses the therapists. If they are not satisfied, they have the right to change

therapists. We meet every 6 months to re-assess where we are.

Most of the therapists I associate with are very caring, dedicated

professionals. I always try to encourage them to remember that these " patients "

are someone's baby. That somedays, as a parent of a baby with special needs, we

are just plain overwhelmed with everything.

I try to not only provide the services the family/team agree on, I also try to

provide resources, encouragement, caring and also an ear for a tired or unhappy

or I-just-can't-do-this-anymore parent.

So remember to also try to keep an open mind when meeting the therapists....just

like every other field, there are those who are totally dedicated to trying to

enrich and enhance the lives of those we work with...

Off my soapbox now

Sue (COTA/L), more importantly, mom to Kate 19 and Karrie 13 w/ds and mild

autism

--

---- bandwsmom <bandwsmom@...> wrote:

> ,

> Have you seen the forms? If not, I would suggest getting a blank copy just so

you can familiarize yourself with the format. Do you know any other parents who

might be willing to share a copy of their child's completed form? That way you

can get an idea of what to expect as far as wording etc.

>

> If I understand correctly, the Early Intervention people want to develop a

therapy plan for your son. How long is that plan to be in place? Every state

is different but just as an example, our plan was good for one year. Progress

was reviewed annually and new objectives were created. Also, the team could be

called together before the year was up if we asked for an interim meeting. The

key was knowing to ask.

>

> The reason you hear horror stories is because those are the ones that people

tell. Chances are there are just as many positive experiences, they just don't

make as good of a tale. That doesn't mean that the horror stories aren't

valuable. Listen and learn from them. Just also know that your experience

doesn't have to be Horror Story II.

>

> You also don't have to sign the agreement that day. It can be kind of a

whirlwind meeting - so many professionals whizzing through their specialty,

papers shuffled in front of you, new terms and acronyms thrown about. It's easy

to feel 'taken along for the ride' rather than like an active participant. If

you're feeling any pressure or even the slightest bit uncertain, tell them that

you want to think about it. They'll kick and moan and complain about this or

that - NOT YOUR PROBLEM. Don't sign, schedule another meeting and take the

paperwork home to review in your own time.

>

>

>

>

> >

> >

> >

> > Ok, so I know I haven't been on here long, but as I begin my journey with

> > Noah and working with the various organizations, I figured I'd throw out a

> > request for some advice to hopefully obtain the best results for my son.

> >

> > I have a meeting with Nevada Eearly Intervention Friday to do our intake

> > and develop our " agreement " .

> >

> > I have heard horror stories about things that they recommend or add in

> > there that in ignorance parents agree to and are then bound by.

> >

> > I was hoping that with all those that have blazed this trail prior to me

> > might be able to provide me some suggestions of things to include or not

> > include.  Specific wording etc.

> >

> > I'm running into some interesting conflicts like my pediatrician says not

> > to start physical therapy yet.  The NICU specialist said I should start

> > them immediately and do them every week.  And Early intervention told me

> > on the phone they would plan on doing it once a month (if that).  They

> > also said that it is a parent education model where they will show us the

> > therapy to do for our son.  Is this a normal experience?

> >

> > I see with just a short time on this list, that frustration is and will be

> > many, and obviously it is beginning for me.

> >

> > I'll take all the advice you wanna give.

> >

> > Thanks.

> >

> >

> >

> >

[Guest guest]

I think early intervention is a wonderful thing and a curse.

Ditto to that!! Some refer to it as Early Interference. Go with your gut on

what you think your child may need, not what others say and have done. The

most important thing right now is that you enjoy this newborn baby time!!

[Guest guest]

Your clients are lucky to have you! had an adult OT when he was in

E/I who did marvelous things with him. He was one of those professionals

that you never forget that helped your child. He was with a home health

agency and not early intervention.

Re: Re: Advice needed

Okay, here's my input....

I'm an EI provider. I work as an occupational therapy practioner. I switched

to this field after my daughter Karrie, who has DS, started EI.

As in every field, there are good therapist and not-so-good. In IL, the

parent chooses the therapists. If they are not satisfied, they have the

right to change therapists. We meet every 6 months to re-assess where we

are.

Most of the therapists I associate with are very caring, dedicated

professionals. I always try to encourage them to remember that these

" patients " are someone's baby. That somedays, as a parent of a baby with

special needs, we are just plain overwhelmed with everything.

I try to not only provide the services the family/team agree on, I also try

to provide resources, encouragement, caring and also an ear for a tired or

unhappy or I-just-can't-do-this-anymore parent.

So remember to also try to keep an open mind when meeting the

therapists....just like every other field, there are those who are totally

dedicated to trying to enrich and enhance the lives of those we work with...

Off my soapbox now

Sue (COTA/L), more importantly, mom to Kate 19 and Karrie 13 w/ds and mild

autism

--

---- bandwsmom <bandwsmom@...> wrote:

> ,

> Have you seen the forms? If not, I would suggest getting a blank copy

> just so you can familiarize yourself with the format. Do you know any

> other parents who might be willing to share a copy of their child's

> completed form? That way you can get an idea of what to expect as far as

> wording etc.

>

> If I understand correctly, the Early Intervention people want to develop a

> therapy plan for your son. How long is that plan to be in place? Every

> state is different but just as an example, our plan was good for one year.

> Progress was reviewed annually and new objectives were created. Also, the

> team could be called together before the year was up if we asked for an

> interim meeting. The key was knowing to ask.

>

> The reason you hear horror stories is because those are the ones that

> people tell. Chances are there are just as many positive experiences,

> they just don't make as good of a tale. That doesn't mean that the horror

> stories aren't valuable. Listen and learn from them. Just also know that

> your experience doesn't have to be Horror Story II.

>

> You also don't have to sign the agreement that day. It can be kind of a

> whirlwind meeting - so many professionals whizzing through their

> specialty, papers shuffled in front of you, new terms and acronyms thrown

> about. It's easy to feel 'taken along for the ride' rather than like an

> active participant. If you're feeling any pressure or even the slightest

> bit uncertain, tell them that you want to think about it. They'll kick

> and moan and complain about this or that - NOT YOUR PROBLEM. Don't sign,

> schedule another meeting and take the paperwork home to review in your own

> time.

>

>

>

>

> >

> >

> >

> > Ok, so I know I haven't been on here long, but as I begin my journey

> > with

> > Noah and working with the various organizations, I figured I'd throw out

> > a

> > request for some advice to hopefully obtain the best results for my son.

> >

> > I have a meeting with Nevada Eearly Intervention Friday to do our intake

> > and develop our " agreement " .

> >

> > I have heard horror stories about things that they recommend or add in

> > there that in ignorance parents agree to and are then bound by.

> >

> > I was hoping that with all those that have blazed this trail prior to me

> > might be able to provide me some suggestions of things to include or not

> > include. Specific wording etc.

> >

> > I'm running into some interesting conflicts like my pediatrician says

> > not

> > to start physical therapy yet. The NICU specialist said I should start

> > them immediately and do them every week. And Early intervention told me

> > on the phone they would plan on doing it once a month (if that). They

> > also said that it is a parent education model where they will show us

> > the

> > therapy to do for our son. Is this a normal experience?

> >

> > I see with just a short time on this list, that frustration is and will

> > be

> > many, and obviously it is beginning for me.

> >

> > I'll take all the advice you wanna give.

> >

> > Thanks.

> >

> >

> >

> >

[Guest guest]

For us EI was not a traumatic event. Once we got 's diagnosis at 3 weeks

old we were able to start looking at our options. In Colorado they have a IFSP

(Individual Family Support Plan) that is birth to 3 yo. In 1998 they were

closing down the schools that were for special needs children and putting

everyone in their neighborhood or center school. We were lucky and my private

insurance covered our PT weekly from about 3 month to about 4 years. Along with

Speech, from 2 yo-5 1/2 yo. The EI team here helped us with school, which we

started at 6 months, and how to get money from our county Developmental

Disability resource center.

I agree with what has been said about your child being a child 1st and foremost.

Enjoy your son, take lots of pictures, and treat him as you would any other

child you would have. I tried to not get all hooked up in the whole DS issue and

enjoyed my time with . The therapies came every week and we used what we

were taught in our play with .

There will be some " professionals " that will try to tell you what your child

needs and they may even tell you " they have a master degree in blah blah " but

you will know what your son needs and if you remember to speak for your son

everything will work out to his benefit.

Life in general is not easy and having a child with a disability definitely can

add some kinks but all in all it's worth it to be a parent of such a wonderful

child, not always easy as they get older and get a smart mouth but I wouldn't

trade for the world!

Just my 2 cents

Marcia

dboruchowitz@...; ; Loree5@...

From: cindysue@...

Date: Mon, 8 Jun 2009 20:38:58 -0400

Subject: Re: Advice needed

I think early intervention is a wonderful thing and a curse.

Ditto to that!! Some refer to it as Early Interference. Go with your gut on

what you think your child may need, not what others say and have done. The

most important thing right now is that you enjoy this newborn baby time!!

[Guest guest]

You know, as with everything, EI is going to be what you make it.

My husband is an EI Support Coordinator. Besides having several of our own

children in the EI program, we have had numerous foster children who also needed

services. I was a very strong and involved advocate for all the children. I

pushed, I switched Support Coordinators, I switched and requested different

therapists. I urged parents who were not happy with their services to speak up

and get what they felt their child needed. It works. I LOVED when they

would come into the home and show me what to do with the kids since I could then

continue it all the time with them in between visits. I would question them in

detail if I had any concerns or if I felt strongly about what they were saying.

I was the mom. I knew the kids. They knew the therapy. We needed to work

together as a team.

When you first have your meeting and put things down on paper, be VERY open and

let them know what you want, need, don't want, feel strongly about... this is

for YOUR CHILD. And, feel free to call your EI worker if things aren't working

or change or you need more support in an area. That's their job. Here, you

write a yearly IFSP and then the worker updates it monthly.. has visits as often

as you like.. my husband sees some families on a weekly basis and others

telephonically except for the 3 month visit where he needs to see them. You can

change things as you go along because that's life.

We are SO FORTUNATE to have an EI program.. used to be that our kids didn't get

services until they hit school age. Not everything is going to work perfectly

and not every therapist is going to mesh with every parent perfectly. Talk to

other parents in your area and see who they liked or recommend. Use those

natural supports!!

I tell you.. EI, IFSP's are just warm ups for IEPs. Learn now how to advocate,

manipulate, communicate, educate, compromise and SPEAK UP... and you'll do great

for the next ?? years.

Good luck,

[Guest guest]

Amy,

Wow, I will definitely keep you in my prayers. It is amazing how they are

just trying to pass the buck and not take responsibility for your care. I am

sorry you have to go through this.

Have you been able to talk to Dr. Schroth? I bet UW would consider treating

with her assistance and I am pretty sure Dr. Schroth works in UW and the

Children's Hospital. Let me know if you are interested in her contact info. It

would be worth a try.

Kristal- Mom to Brett- SMA II- 9-1/2 years old

Visit Brett @ www.our-sma-angels.com/brett

OR www.caringbridge.org/visit/brettwilson

Advice Needed

I got some serious news this week that makes my wheelchair repairs look

small.

Some of you know my health has been less than well lately. After being

poo-poohed by doctors for a year a CT scan finally was done but revealed two

'masses'.

According to my doctors these two uninvited buggers snuck in and set up house

in my abdomin in less than six months. They've grown big enough that now rumors

are even being spread that I'm pregnant [no I am not a couger or pregnant, no

matter how good looking my friends are].

Back to the realities of my health- Finding this problem is one thing but

getting treatment in a setting equiped to handle my size and disabilities is a

whole other story.

As of the momment I have been turned away by seven different urology

practices. The local practices tell me to go to Boston, the big Boston hospitals

keep telling me that Childrens needs to do the biopsies, and any surgery [if

needed] while Childrens won't operate on any patients over thirty five.

While these doctors are refusing me appointments and busy playing G.O.M.E.R.

[Get Out of My Exam Room] hot potato with me, my health deteriorates, and

diagnosis and treatment are being delayed and denied.

I have an advocate on this situation but I need medical care now, not after it

takes months and years to file an ADA complaint, to enforce my rights.

Fatal bladder cancer has killed some of my relatives and I'm not exactly

feeling like the happiest girl in the whole U.S.A. at the momment.

I guess I'm destined to never have a dull momment in life.

So on that not so uplifting note- any advice, support, possible leads to

doctors who are competent, news media, legal help, prayer chains, love ins, sit

down strikes, candle light vigils, kegger parties, you name it, are welcomed.

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05:57:00

[Guest guest]

Thank you, every good vibe and heartfelt prayer counts.

Where is Dr Schroth located?

No matter what the outcome ends up being, I wish I could get a reporter to raise

awareness and document this process [by the way Childrens Hosp has been in

production for a reality cable series- notice the hospital dosen't want me

getting interviewed?] To me people don't believe these kinds of injustices

really exist until they see it, or more than one party is involved to expose it.

Childrens is playing huge games with my life right now. They've treated me since

1968 [urology included] but now thier 'care' is a one way street.

This year the one physician who began the 'evict Amy crusade' was telling all of

my other Childrens specialists behind my back that I wanted to transition out of

Childrens hospital.

[so much for Nothing About Me Without Me]

My community primary dr, [not a Childrens dr], my two health proxies, and I,

clearly told them no, documented our many efforts to transition, why it failed,

etc.

I called Childrens risk management after Childrens redoubled thier efforts.

Suddenly my files were saying I had SMA type 4, then the clinics were not

returning calls to pharmacies and my primary dr. Claiming no refills on my neuro

and pulmonary meds because they " had no record of being a patient in the past

two years " when I saw them six months ago. Blood and urine specimins were being

taken from me but when followed up for results the labs didn't actually run all

tests ordered.

When I reported these problems, Childrens patient relations then wanted a 'team

meeting' with every specialist I see ganging up on me all at once. It was being

planned that 'team Childrens' would be stampeding over me so I called around and

got an advocate of my own and my two proxies {a.k.a. witnesses to every

appointment} to get the playing field a little more level.

Yesterday was my 'team' meeting. The advocate and Childrens talked all along,

but at the last minute Childrens called me and said that my advocate would not

be allowed, that lawyers [my advocate is not an attorney] weren't allowed. That

the doctors would not meet with me unless I told my advocate to " wait in the

hall during the meeting " . Childrens demanded to know if either proxy had any law

experience, then they tried to sweet talk me into letting the hospital's patient

relations dept " be my advocate instead " and " uninvite " my own advocate. I was

told how couragious and remarkable I am, yada yada.

I politely but firmly told Childrens no, that I wanted an advocate that is not

employed by Childrens, that my patient rights allow me to involve who I want to

in re to my medical decisions, and after trying to handle this Childrens'

way,nothing was getting resolved.

The meeting happened with my advocate present after all. The primadonna doctors

had thier apprehensive little comfort zones reassured so they didn't have

anymore tantrums. I'm still in limbo, Childrens is still trying to transition me

out, but for the momment more team meetings have been scheduled to appease the

hospital.

What really gets me is the selfish attitude these doctors have. I'm suppossed to

make them feel better, take my own the time and resources, my proxies time from

thier own jobs, and drop everything during my own medical crisis, for them.

When did it become a patients job to comfort the doctors?

>

> Amy,

> Wow, I will definitely keep you in my prayers. It is amazing how they are

just trying to pass the buck and not take responsibility for your care. I am

sorry you have to go through this.

> Have you been able to talk to Dr. Schroth? I bet UW would consider

treating with her assistance and I am pretty sure Dr. Schroth works in UW and

the Children's Hospital. Let me know if you are interested in her contact info.

It would be worth a try.

> Kristal- Mom to Brett- SMA II- 9-1/2 years old

> Visit Brett @ www.our-sma-angels.com/brett

> OR www.caringbridge.org/visit/brettwilson

> ----- Original Message -----

[Guest guest]

Amy,

I'm really sorry to hear you aren't doing well and that you can't get you

medical needs met. This all has to be beyond frustrating and scary. I wish I

had advice. I am still learning how to get through the system for my needs...

and I do know what a pain it is when you need this done yesterday. You are in

my thoughts and prayers, keep fighting them as you have, you are your best

advocate and I'm also glad you have another to help. Advocates are so

important.

Best wishes,

-- In , " Amy " <charmedcripchic@...> wrote:

>

> I got some serious news this week that makes my wheelchair repairs look small.

>

> Some of you know my health has been less than well lately. After being

> poo-poohed by doctors for a year a CT scan finally was done but revealed two

'masses'.

>

> According to my doctors these two uninvited buggers snuck in and set up house

in my abdomin in less than six months. They've grown big enough that now rumors

are even being spread that I'm pregnant [no I am not a couger or pregnant, no

matter how good looking my friends are].

>

> Back to the realities of my health- Finding this problem is one thing but

getting treatment in a setting equiped to handle my size and disabilities is a

whole other story.

>

> As of the momment I have been turned away by seven different urology

practices. The local practices tell me to go to Boston, the big Boston hospitals

keep telling me that Childrens needs to do the biopsies, and any surgery [if

needed] while Childrens won't operate on any patients over thirty five.

>

> While these doctors are refusing me appointments and busy playing G.O.M.E.R.

[Get Out of My Exam Room] hot potato with me, my health deteriorates, and

diagnosis and treatment are being delayed and denied.

>

> I have an advocate on this situation but I need medical care now, not after it

takes months and years to file an ADA complaint, to enforce my rights.

>

> Fatal bladder cancer has killed some of my relatives and I'm not exactly

feeling like the happiest girl in the whole U.S.A. at the momment.

>

> I guess I'm destined to never have a dull momment in life.

>

> So on that not so uplifting note- any advice, support, possible leads to

doctors who are competent, news media, legal help, prayer chains, love ins, sit

down strikes, candle light vigils, kegger parties, you name it, are welcomed.

>

[Guest guest]

This is terrible.  I wish I had some great advice for you but you are doing

everything possible.  I hope you get the help that you need!!!

 Lori

 

________________________________

From: Amy <charmedcripchic@...>

Sent: Thursday, August 6, 2009 10:55:21 PM

Subject: Advice Needed

 

I got some serious news this week that makes my wheelchair repairs look small.

Some of you know my health has been less than well lately. After being

poo-poohed by doctors for a year a CT scan finally was done but revealed two

'masses'.

According to my doctors these two uninvited buggers snuck in and set up house in

my abdomin in less than six months. They've grown big enough that now rumors are

even being spread that I'm pregnant [no I am not a couger or pregnant, no matter

how good looking my friends are].

Back to the realities of my health- Finding this problem is one thing but

getting treatment in a setting equiped to handle my size and disabilities is a

whole other story.

As of the momment I have been turned away by seven different urology practices.

The local practices tell me to go to Boston, the big Boston hospitals keep

telling me that Childrens needs to do the biopsies, and any surgery [if needed]

while Childrens won't operate on any patients over thirty five.

While these doctors are refusing me appointments and busy playing G.O.M.E.R.

[Get Out of My Exam Room] hot potato with me, my health deteriorates, and

diagnosis and treatment are being delayed and denied.

I have an advocate on this situation but I need medical care now, not after it

takes months and years to file an ADA complaint, to enforce my rights.

Fatal bladder cancer has killed some of my relatives and I'm not exactly feeling

like the happiest girl in the whole U.S.A. at the momment.

I guess I'm destined to never have a dull momment in life.

So on that not so uplifting note- any advice, support, possible leads to doctors

who are competent, news media, legal help, prayer chains, love ins, sit down

strikes, candle light vigils, kegger parties, you name it, are welcomed.

[Guest guest]

I can tell you from experience to call MD . They have 3 locations now.

They are the best,

www.mdanderson.org

Best of luck to you.

Terry

>

> This is terrible.  I wish I had some great advice for you but you are doing

everything possible.  I hope you get the help that you need!!!

>  Lori

>

>  

>

> ________________________________

> From: Amy <charmedcripchic@...>

>

> Sent: Thursday, August 6, 2009 10:55:21 PM

> Subject: Advice Needed

>

>  

> I got some serious news this week that makes my wheelchair repairs look small.

>

> Some of you know my health has been less than well lately. After being

> poo-poohed by doctors for a year a CT scan finally was done but revealed two

'masses'.

>

> According to my doctors these two uninvited buggers snuck in and set up house

in my abdomin in less than six months. They've grown big enough that now rumors

are even being spread that I'm pregnant [no I am not a couger or pregnant, no

matter how good looking my friends are].

>

> Back to the realities of my health- Finding this problem is one thing but

getting treatment in a setting equiped to handle my size and disabilities is a

whole other story.

>

> As of the momment I have been turned away by seven different urology

practices. The local practices tell me to go to Boston, the big Boston hospitals

keep telling me that Childrens needs to do the biopsies, and any surgery [if

needed] while Childrens won't operate on any patients over thirty five.

>

> While these doctors are refusing me appointments and busy playing G.O.M.E.R.

[Get Out of My Exam Room] hot potato with me, my health deteriorates, and

diagnosis and treatment are being delayed and denied.

>

> I have an advocate on this situation but I need medical care now, not after it

takes months and years to file an ADA complaint, to enforce my rights.

>

> Fatal bladder cancer has killed some of my relatives and I'm not exactly

feeling like the happiest girl in the whole U.S.A. at the momment.

>

> I guess I'm destined to never have a dull momment in life.

>

> So on that not so uplifting note- any advice, support, possible leads to

doctors who are competent, news media, legal help, prayer chains, love ins, sit

down strikes, candle light vigils, kegger parties, you name it, are welcomed.

>

>

>

>

>

>

>

>

[Guest guest]

World renowned cancer center here in Houston: http://www.mdanderson.org/

You need a referral from a doctor to be seen there.

Lori

I am Bippy on Twitter.

________________________________

From: Amy <charmedcripchic@...>

Sent: Thursday, August 13, 2009 8:22:59 PM

Subject: Re: Advice Needed

 

Okay where is MD ? What state? I'm interested here but need info.

> >

> > This is terrible.  I wish I had some great advice for you but you are doing

everything possible.  I hope you get the help that you need!!!

> >  Lori

> >

> >  

> >

> > ____________ _________ _________ __

> > From: Amy <charmedcripchic@ >

> > @gro ups.com

> > Sent: Thursday, August 6, 2009 10:55:21 PM

> > Subject: Advice Needed

> >

> >  

> > I got some serious news this week that makes my wheelchair repairs look

small.

> >

> > Some of you know my health has been less than well lately. After being

> > poo-poohed by doctors for a year a CT scan finally was done but revealed two

'masses'.

> >

> > According to my doctors these two uninvited buggers snuck in and set up

house in my abdomin in less than six months. They've grown big enough that now

rumors are even being spread that I'm pregnant [no I am not a couger or

pregnant, no matter how good looking my friends are].

> >

> > Back to the realities of my health- Finding this problem is one thing but

getting treatment in a setting equiped to handle my size and disabilities is a

whole other story.

> >

> > As of the momment I have been turned away by seven different urology

practices. The local practices tell me to go to Boston, the big Boston hospitals

keep telling me that Childrens needs to do the biopsies, and any surgery [if

needed] while Childrens won't operate on any patients over thirty five.

> >

> > While these doctors are refusing me appointments and busy playing G.O.M.E.R.

[Get Out of My Exam Room] hot potato with me, my health deteriorates, and

diagnosis and treatment are being delayed and denied.

> >

> > I have an advocate on this situation but I need medical care now, not after

it takes months and years to file an ADA complaint, to enforce my rights.

> >

> > Fatal bladder cancer has killed some of my relatives and I'm not exactly

feeling like the happiest girl in the whole U.S.A. at the momment.

> >

> > I guess I'm destined to never have a dull momment in life.

> >

> > So on that not so uplifting note- any advice, support, possible leads to

doctors who are competent, news media, legal help, prayer chains, love ins, sit

down strikes, candle light vigils, kegger parties, you name it, are welcomed.

> >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

Hi Sue, 50mcg T4 is not a big dose- most full replacement doses are 125 to150mcg. You don't give the test ranges, but FT4 usually goes 11-24 or thereabouts- so you see that yours is just above the bottom cut off point. I'd go back to the doc and ask for a dose increase 'to see if it helps' . It is also vital to have sufficient zinc and selenium both of which are short in UK soils to aid with the conversion of the inactive T4 into the active T3. > Subject: advice needed> > Hi, I was finally diagnosed as sub clinical hypothyroid last December after many years of being told the usual ''results within range'' story! and being very ill last year I had a doctor that understood how ill I was. I started on 25mg of levothyrozine 13.11.09 and felt an improvement after a few days. It was increased to 50mg 29.1.10 after deteriating again. Just had results of recent blood test but not sure if it's good or bad. T4 12.62 + T.S.H 0.96 > > > > ------------------------------------> > TPA is not medically qualified. Consult with a qualified medical practitioner before changing medication.> >

[Guest guest]

MODERATED TO REMOVE MESSAGES PREVIOUS READ. PLEASE REMEMBER TO REMOVE THESE

BEFORE CLICKING 'SEND' AS IT IS FRUSTRATING FOR OTHER MEMBERS WHO EITHER READ

DIRECT FROM THE WEB SITE OR WHO GET A DAILY DIGEST TO HAVE TO SCROLL THROUGH

THEM ALL AGAIN. LUV - SHEILA

_________________________________________________________________

Hi , thank you so much for your reply. test ranges are:- FT4 9.0 - 24.0

and TSH 0.35 - 5.5. I will inquire re: zinc + selenium and ask my Dr for an

increase but think he might not increase my dose. Will T3 medication help? and

which one would you recommend? if I can order it via my Son? or do you think I

will be better off trying to increase my levothyrozine instead. Everything

seems so confusing, not sure if my results should be higher or lower to be

'normal' but I would rather be treated on how I feel and reallt do not want to

be how ill I was last year. Wonderful website for help + info. Regards - Sue

> 50mcg T4 is not a big dose- most full replacement doses are 125

to150mcg. You don't give the test ranges, but FT4 usually goes 11-24 or

thereabouts- so you see that yours is just above the bottom cut off point. I'd

go back to the doc and ask for a dose increase 'to see if it helps' . It is also

vital to have sufficient zinc and selenium both of which are short in UK soils

to aid with the conversion of the inactive T4 into the active T3.

>

>

[Guest guest]

Your thyroid function tests look fine, but then,

they only tell doctors how much thyroid hormone your thyroid gland is secreting

- they do not tell whether this thyroid hormone is actually getting into the

cells or not. If you still have many of the symptoms of hypothyroidism and you

are not getting well on the increased dose, then ask your GP to increase your

levothyroxine by 25 mcgs again to see if that helps, but you should not

increase your dose until six to eight weeks have passed since your last dose

increase.

We have no idea at this stage whether the active

hormone T3 will be better for you or not. You need to get your free T3 level

tested and see whether this is in the reference range. If your doctor refuses

to test it, you can get it done privately. Check our FILES section under 'Discounts'.

It does seem the majority of sufferers have no problem converting the mainly

inactive thyroid hormone T4, into the active hormone T3, but for those who are

unable to convert, they must take some form of T3, either synthetic or natural.

Make sure that you get your GP to test the

following: ferritin (stored iron), vitamin B12m, vitamin D3, magnesium, folate,

copper and zinc. All of these need to be high in the reference range to help

the thyroid hormone get into your cells. Also, check out that your adrenal

function is fully boosted, and that you do not have systemic candidiasis.

Luv - Sheila

Hi , thank you so much for your reply. test ranges are:- FT4 9.0 - 24.0

and TSH 0.35 - 5.5. I will inquire re: zinc + selenium and ask my Dr for an

increase but think he might not increase my dose. Will T3 medication help? and

which one would you recommend? if I can order it via my Son? or do you think I

will be better off trying to increase my levothyrozine instead. Everything

seems so confusing, not sure if my results should be higher or lower to be

'normal' but I would rather be treated on how I feel and reallt do not want to

be how ill I was last year. Wonderful website for help + info. Regards - Sue

[Guest guest]

Hi Sue, right- it does seem confusing at first- low TSH is good, high T4 is good- they work like a see saw! As to T3 it undoubtedly would help BUT the guidance that GP's recieve is against this which is why it's easiest to see if a sufficient dose of T4 would do the trick first before going down the T3 route- which would probably end up with private docs and private bills. No point going the hard way if the easy one willl do. > thyroid treatment > From: ludlam_s@...> _________________________________________________________________> > Hi , thank you so much for your reply. test ranges are:- FT4 9.0 - 24.0 and TSH 0.35 - 5.5. I will inquire re: zinc + selenium and ask my Dr for an increase but think he might not increase my dose. Will T3 medication help? Regards - Sue> > > > > > > > > ------------------------------------> > TPA is not medically qualified. Consult with a qualified medical practitioner before changing medication.> >

[Guest guest]

Hi ,

It is VERY difficult to adapt to a new sound processor if you haven't

had regular mappings. Are you doing any auditory training - listening to

books on tape and so forth?

I, too, was implanted in 1997, and started with a body worn processor,

then the Sprint, Esprit, 3g, and now Freedom in that ear. Every time I

changed processors I had to learn again to hear, even when they were

using the same strategy (SPEAK). Because each processor is different,

and usually stronger, there is a learning curve involved.

I had a LONG journey back to hearing with my new N5 implant. They are

not yet able to program SPEAK on that processor, and I've never used ACE

successfully. Took about 5 months to get to hearing where I thought I

should be at 3 months. But yesterday I went to the Cleveland Clinic with

a candidate for a CI. He cannot read lips and has very little hearing.

He doesn't know sign language. I went with a laptop and typed out what

the Dr. was asking him so he could read it. Personal CART reporter.

Good that I type faster than most people can talk. AND because of the

way I was sitting I was listening to the Dr speak with my N5 processor.

Missed NONE of what was said.

Going back to an older processor is just a step backwards at this

point, because the time WILL come when they will no longer be repairable.

However, I would contact Cochlear and see if they can give you the same

allowance that they are giving others now. Fair is fair.

Anyone else have suggestions, comments, advice for me? I have been using

my implant since February 1997 so I am not a newbie to this, but find

that anger and frustration are the words of the day most of the time.

(in Oregon)

____________________________________________________________

Get Free Email with Video Mail & Video Chat!

http://www.juno.com/freeemail?refcd=JUTAGOUT1FREM0210

[Guest guest]

Kathleen, we always recommend increasing their dose of Armour

after the initial 7 days by half a grain only. You should stay on that dose for

3 to 4 weeks before increasing by another half grain and stay on that dose

again for another 3 to 4 weeks before further increases by another half grain.

Please check out the attached. I always ask people to check out this particular

file so they understand completely how they should take NDT and to make 100%

sure they understand everything and ask questions first, not afterwards if

there is anything they don't understand.

The pain you are experiencing in your lower back could be caused

through bladder/kidney problems or because of a lack of T3. You should write to

the Head of Practice as a matter of urgency asking for an investigation into

why no request was received at the hospital for an urgent appointment.

Luv - Sheila

My GP has also supposed to have made an urgent referral on 2nd Aug, which the

hospital say they have not received, so have ask the surgery to send a copy,

and will shortly see if that has arrived.

I can only think that the surgery are at fault here, but intend to find out. I

have like many of us suffered from surgeries, and have been struck off by two

surgeries in the past.

1 of 1 File(s)

HOW TO TREAT WITH NATURAL THYROID EXTRAC2.doc

[Guest guest]

Hi Kathleen, Diclofenac is notorious for reducing the appetite and causing constipation- which cand also cause back ache ( if there is no other reason) which with you already existing problems isn't going to help much is it. did you hear the programme on R4 on thursday about constiption- which did mention about your problems these and how it is treated at a good hospital? - have a look at' hear again' on the BBc website if you are interested. I do hope that you get your appt sorted out and find a good a surgeon as the one I have. > thyroid treatment > From: kranger1@...> Date: Fri, 13 Aug 2010 08:13:42 +0000> Subject: Advice needed> > First I have just changed to trying Armour Thyroid and have been taking NAE for 1 week and increased it to 2 a day now. How long could one expect to show that it is NOT the fault of T3 not absorbing T4, and to revert back to Thyroxine (T4).> I am also experiancing much pain in both groin areas now and have great difficuly walking. I have also had a hip xray, but do not think the hip is the problem. I have already had repair to rectocele/cystocele, and the rectocele has caused problems again for several years. I have also had pain in the bladder which has now shifted to both sides of the groin. My lower back is also very painful plus pain going down both legs.I also have pain in my left shoulder, and having already had cancer I am somewhat concerned.> I also have to wonder if the pain killers which are DICLOFENAC are in fact causing the pain to be worse. I have also had to resort to suppositries, and have to wonder if this in turn is caused by the painkiller causing constipation which in turn would not help with the prolapse and cause more pain, in turn cause dehydration. This in turn would not help if one cannot drink enough. I am going to try stopping the painkillers to see if the pain gets less.> My GP has also supposed to have made an urgent referral on 2nd Aug, which the hospital say they have not received, so have ask the surgery to send a copy, and will shortly see if that has arrived.> I can only think that the surgery are at fault here, but intend to find out. I have like many of us suffered from surgeries, and have been struck off by two surgeries in the past.> > > > ------------------------------------> > TPA is not medically qualified. Consult with a qualified medical practitioner before changing medication.> >

[Guest guest]

HI JENNY

I will look this programme up, but how can I pick out a good surgeon, and it is

not just this, is getting the PCT to fund it, if it is out of the area. I am

also not in a good state for getting about now even on my mobility scooter, and

in turn it is getting me down, plus not getting enough slepp at night due to the

pain, which seens to have shifted off the bladder, but the pain in both sides of

the groin which goes right down both legs, and still have the pain in the back.

I also have added pain in left shoulder, so is becomming not easy to push myself

up.

I have been told that the groin pain on X-ray of the hip revealed Arthritas, but

I tend to think that there is more than arthritas. I think too that I have to

see my own GP about the result as I had a letter.

They put me in to see another GP due to the problems with Diclofenac, and he ask

me if I was still taking OMPRAZOLE and I tried to explain that they made me

worse, but he has prescribed 3 packets of this. For the constipation he

prescibed Lactulose, and again I have had this before and all this does is

create wind, and pain with it, so I left that one with the chemist. He has also

prescribed CO-CODAMOL,and this is the drug that caused me to end up being struck

of by one GP as I had to summon the O.O.HRS, and again all I get is that it is

an irritable colon, and all I can say to this, is it not time that a Doctor

could diagnose a Rectocele/Cystocele.

I have also had to complain about O.O.HRS advising me to take Paracetamol, and

ended up in more and more pain including headache and breathing problems, until

I stopped taking it (they caused me to be worse). A cough mixture with codeine

in it has also caused me to get worse.

This CO-CODAMOL contains both of these, and this Doctor has prescribed 200

tablets. I am taking all this lot back to my GP as I do not want them in my

flat.

I have also come across an article in THE TELEGRAPH that Partacetamol is causing

children to get Asthma, ezcema etc. They think it causes inflammation of the

airways, and in turn this may well be why it affects me, as in childhood I

suffered badly from the lungs.

I am going to refuse any more appointments with this GP, but I am also cross

that he has wasted all these drugs.

I am also going to ask who it was that did not send my referral letter off.

Kathleen

>

>

> Hi Kathleen,

> Diclofenac is notorious for reducing the appetite and

causing constipation- which cand also cause back ache ( if there is no other

reason) which with you already existing problems isn't going to help much is it.

did you hear the programme on R4 on thursday about constiption- which did

mention about your problems these and how it is treated at a good hospital? -

have a look at' hear again' on the BBc website if you are interested. I do hope

that you get your appt sorted out and find a good a surgeon as the one I have.

>

>

>

[Guest guest]

I also had (still do at times) terrible pains in my groin, back, legs which was so painful I could not get to sleep at all. Also shoulders. I was given strong pain killers which just made me feel ill. The doctor then prescribed Amitriptyline, which in high doses is an anti depressant, but at the very low dose of 10mg taken one a night before going to bed, it worked wonders - it does contain lactose if you are allergic to it.

In fact after taking it for a few nights I found I didn't have to take it for a few nights after that. I now only take it if the previous night was so bad I couldn't sleep.

It had no side effects with me, except that I was a bit extra tired in the morning when I got up, but it soon passed.

At such a small dose it just acts as a muscle and nerve relaxant which in turn eases the pain. It is not licensed as a pain killer but often used in low doses like that very successfully.

Lilian

I am also not in a good state for getting about now even on my mobility scooter, and in turn it is getting me down, plus not getting enough slepp at night due to the pain,

[Guest guest]

Hi , I am new to this group but would like to share my experience with you. Five years ago I experienced terrrible tiredness, I would get up in the morning and after breakfast wished I could go back to bed. As I am a district nurse I knew I had to keep going as I couldn`t let my patients or colleagues down. Driving to work in the morning was a chore I was sooo tired. One day I was washing the kitchen floor and had to sit down as the pain in my hips and legs was excruciating. Another day I took the dog for a walk and had to sit on a wall as I felt my leg were not going to carry me any further and, I had put on over 2stone in weight. I spoke to the GP where I worked ans she said women my age tend to put weight on round the middle I was 54yrs then.

Fast forward 5months and when out shopping I saw a book that said " Tired. it may not be the menopause" This caught my attention and I bought the book and it said it could be my Thyroid. First thing Monday morning I got one of my colleagues to do TFT bloods and hrs. later the results came back by fax. TSH 62.85. T4 6.2. !!!!!! The GP where I worked said he had never seen levels as high/low and started me on Levothyroxine stat., and advised me to hand in and get an urgent appt with my GP. On my way home from work I called in to the surgery and handed in my results and my own GP phoned and asked me to return. She asked me to stop the Thyroxine as the results must be wrong and to come in the next day for repeat TFT`s. Four days later results came back the same. For 2yrs I steadily increased thyroxine to 125mgs, but the pains never went away and the weight gain continued. I am now 13st 8lbs. On reading all about

Hypothyroidism I have been on varios web sites who all advise Natural Thyroid replacement or at least some T3. I contacted my GP who agreed to but me on 10mcgs T3 but reduced my T4 to 100mcgs and then 4weeks ago it was increased to 20mcgs in the am. I have however been upping it myself and now take 20mcgms am and 10mcgs 8hrs later. Still no sign of weight loss evanthough I swim 3 thimes a week and work full time. Anyone got any adviceGwenn Gwenn A GibsonFrom: Lilian <lilian15@...>To:

thyroid treatment Sent: Sun, 15 August, 2010 12:11:42Subject: Re: Re: Advice needed

I also had (still do at times) terrible pains in my groin, back, legs which was so painful I could not get to sleep at all. Also shoulders. I was given strong pain killers which just made me feel ill. The doctor then prescribed Amitriptyline, which in high doses is an anti depressant, but at the very low dose of 10mg taken one a night before going to bed, it worked wonders - it does contain lactose if you are allergic to it.

In fact after taking it for a few nights I found I didn't have to take it for a few nights after that. I now only take it if the previous night was so bad I couldn't sleep.

It had no side effects with me, except that I was a bit extra tired in the morning when I got up, but it soon passed.

At such a small dose it just acts as a muscle and nerve relaxant which in turn eases the pain. It is not licensed as a pain killer but often used in low doses like that very successfully.

Lilian

I am also not in a good state for getting about now even on my mobility scooter, and in turn it is getting me down, plus not getting enough slepp at night due to the pain,

[Guest guest]

Hello Gwenn and welcome to our forum where I hope you get all

the help and support you need. There are many and various associated conditions

that go along with being hypothyroid that you need to address and I have attached

a document that will give you an idea of some of them. It is too easy to advise

patients with the symptoms of hypothyroidism to start on some form of thyroid

hormone replacement, either synthetic levothyroxine, synthetic T3 in

combination with T4 or T3 alone, or to start natural thyroid extract. However,

none of these will work unless you check out that everything else is in order.

You need to ask your GP to test the following: ferritin, vitamin

B12, vitamin D3, magnesium, folate, copper and zinc. When you get the results,

post them on the forum, together with the reference range for each of the tests

done. Doctors will tell you often that wherever the results appear in the

reference range, you are 'normal' and don't have a problem, but we need to know

whether the results are at the bottom, the middle or the top of the reference

range. No amount of thyroid hormone will be able to get into the cells if any

of these are low.

Also, check out our FILES section (access this from the Home

Page of this forum web site) and open the 'Adrenal' Folder. Do the Adrenal

Questionnaire and see how you score. Also, check out the FILE on the 'Home

Testing' and let us know the results. Open also the 'Candida' Folder and do the

Candida Questionnaire too and see how you score with that too. If you score

high, you should get the 24 hour salivary adrenal profile to check out your

levels of cortisol and DHEA and check to see also whether you have candida

antibodies. Again, no amount of thyroid hormone can be absorbed if you have low

adrenal reserve or candida until these are treated. Look on the Patient

Information Leaflet tucked in the box of levothyroxine. it tells you that you

must tell your doctor if you have an adrenal problem and should not start thyroid

hormone replacement if you have. Even doctors are not aware of this.

Also, you could be suffering from mercury poisoning if you have

amalgam fillings. Go to our web site www.tpa-uk.org.uk

and click on 'Hypothyroidism' and then click on 'Associated Conditions' in the

drop down Menu and read about these and how they affect thyroid treatment.

Are you taking 200mcgs Selenium daily with food to help with conversion

of thyroxine to T3. Check out the Supplements recommended by Dr Theodora

Mantzourani also in the FILES section. We also recommend high doses of vitamin

C (1,2000mcgs daily) but if you have low adrenal reserve, you need much higher

doses. Take your temperature three times daily at the same times each day and

let us know what these are. You can check out Dr Rind's web site with his

temperature graph http://www.drrind.com/therapies/metabolic-temperature-graph.

Thyroxine is a mainly inactive thyroid hormone that has to convert

to the active thyroid hormone T3. It is T3 that every cell in your body and

brain needs to make them function.

Are you continuing to reduce the thyroxine when increasing the

T3? Have you lost any of the symptoms you had before starting thyroid hormone

replacement?

Luv - Sheila

TSH 62.85. T4 6.2. !!!!!! The GP where I worked

said he had never seen levels as high/low and started me on Levothyroxine

stat., and advised me to hand in and get an urgent appt with my GP. On my way home

from work I called in to the surgery and handed in my results and my own GP

phoned and asked me to return. She asked me to stop the Thyroxine as the

results must be wrong and to come in the next day for repeat TFT`s. Four

days later results came back the same. For 2yrs I steadily increased thyroxine

to 125mgs, but the pains never went away and the weight gain continued. I

am now 13st 8lbs. On reading all about Hypothyroidism I have been on various

web sites who all advise Natural Thyroid replacement or at least some T3. I

contacted my GP who agreed to but me on 10mcgs T3 but reduced my T4 to 100mcgs

and then 4weeks ago it was increased to 20mcgs in the am. I have however been

upping it myself and now take 20mcgms am and 10mcgs 8hrs later. Still no sign of

weight loss even though I swim 3 thimes a week and work full time. Anyone got

any advice

1 of 1 File(s)

Why thyroid hormone stops working.doc