Re: April endocrine stuff ( ALL need to rule this out)

July 20, 2009

I just want to let every body to try to rule out any possibility that

this could be an Endocrine probleme. I just found out I do have a Thyroid

disease NOT Stills, by chance. An Optalologyst said There is a disease that is

known to read " normal " on the blood work & still be Euthyroid Graves . the

sad thing is that I can't get an Endo to treat me wt. the " normal " ..I do

not know what else to do ? but I'm certain he was right, I have every single

symptom, includes " INFLAMATION " his questions were all about that,. My

finger tips get swolen & crack, joints hurt & change, from here to that one, it

is all about inflamation of bones & tissues.Puffy face,

& Eye lids, eye inflamation, hair loss, & hair change from curly to thin,

& straigth, weight gain ( un warrented) facial hair, muscle fatigued,

muscle weakness, muscle pain, joint pains, severe cosntipation, severe fatigue,

severe memory &

concentration dif. COLD limbs, cold intolerance, & heat intolerance. THIS

desease has a autoinmmune component since the body atacks the thyroid

hence the miss diadnosis wt. STILLS for most of us patients. Not many dr.'s

accept the concept that the tests CAN * & DO read " normal " could be due to the

hassle! . Need to check the web about this on dif. links, like " thyroid

about .com " , " thyroid Science.com, " Dr.Lowe.com...

I wisash every body good luck wt. this,. we can't give up the search.

I won't be able to check in often but please do send me a note if you've

got ANY sugestions, the more we band together on out health problems the

better our chances will get

I am NOT diagnosing ANY body her, simply making you all aware of this since

I've been trying to get diagnosed for 6 yrs now & untill this

Optalmologyst I had not ever heard of this possible " normal " test readings BUT

it is

recorded plenty & now that I looked it up many DO know & it is on literature

also by the " women to women centers on Main.( also recorded by

Solom?) So it is NO secret exept to US that need to get diagnosed.

VIVI.

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July 27, 2009

Vivi

I'm glad you are finally getting some answers. I know what a relief that

can be! I wasn't diagnosed for almost 10 years. Wow that is so

overlapping with Stills symptoms! And I can imagine getting someone to treat

you

when you are WNL could be really huge. I wish you the best of luck. Please

keep us updated. Just to be sure, is it posslbe for you to have both

diseases?

thinking of you,

Jo

In a message dated 7/20/2009 9:25:58 P.M. Eastern Daylight Time,

Vivigriggs@... writes:

am NOT diagnosing ANY body her, simply making you all aware of this since

I've been trying to get diagnosed for 6 yrs now

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July 28, 2009

Hi JO,

Thanks for caring about muy long , long battle to find out ... The thing is

KNOW I know but still CAN " T find a Dr. to treat me because of the " normal

blood work " . So Today the Dr. that's been treatting me for the neck pain (

botox) gave us a book to check called America's top Dr's " & told us it was

time to get out of this area to get the answers !! so I got 3, 4 names

closest to us & hope I can get treatment for this tha's kiling me slowly but

surely.

It's amazing how similar the stories are about this symptoms wt. some of

the members, but I do know it is Graves because it causes autoinmune atacks (

of the thyroide) & the random inflamation , wonder how many others have

this also.

I'll let you know how it goes.. it'll problably take me a while since I

have to get apmt. out of town.

VIVI

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July 29, 2009

Hi Alli,

Acctually , My Rd. sent me to a pain clinic & there I have to see one. I

have never seen the actual Dr. . he just gets the prescription from him & he

gave me prescription for T3 & T4 from a " compound pharmacy " along wt. also

2 other hormones for " mennnopause " wish do very much help, BUT I felt worst

after taking the suplement for the thyroid for 2 weeks so I stopped, good

thing cause according to the research I just found out that what I have (

from the miriads of symptoms & the Optalmologist ) Graves desease is

acctually an excess of the thyroid hormone so by taking more of it I was really

feeding the exact problem I was spoused to correct. I did not tell him since

I'm not oficially diagnosed. We're looking in to a list of Dr.s that are

on the

book " Americas Top Dr.s " so to see if I can get appmt . to see one since

it would be the only way I could get to be taken seroiuslly by Dr.s in Ohio

NOT having the blood wrks to back me up. ( I have the kind that saids I'm

" normal " , but have ALL the symptoms to identified it & according to the

Optalmologyst it is NOT unusual for it to reflect a " normal " blood work

up.?????

Thanks Alli & any body has any sugestions on this problem please let me

know!

VIVI

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July 29, 2009

Vivi,

Have you tried a Naturalpathic Doctor? They tend to look at the thyroid more

than any other doctor and may be able to help you - Just a thought.

Good luck,

Alli

July 29, 2009

Alli

PS

you're very right thought.... Those Natural Dr.s are much more aware of the

Thyroid problems. And IF I just had a reg. problem would be easy to just

take care of it. Like muy husb. just has a " low " hormone deficiency so he

gets a pill for it. I have ONE of many deseases of the thyroid that on top

deos NOT reflect on the blood work wish I now hear does happens frecuently,

but most Dr.s are NOT aware of this lil' detailedthat has put muy life on

literal torture for 3 + yrs. now. ( since I began to have the episodes of

autoinmune atacqs) but much longer since I have this.In the last 6 mo.s I

don't even look like myself. Most do not recognised me. my hair went from

curly to straight thinning, my eyes lids are totally swolen, one much bigger

thaan the other, my nose much thicker on top, & that does not begin to list

ALL of the phisical painfull symptoms I go through like tissue & bone

inflamation etc, etc. much like the Stills. It's consideered an autoinmune

desease even thoug it is an Endocrine. I just hope I can geyt on a treatment

wish

is to block the thyroid hormone & most likely remove the thyroid & I have

a ton of goiters wish is a sure sign of exess thyroid hormone. but they

just let go by ignoring them untill " they are a certain size. ( Too big by

then) causing lots of problems.

Thanks for your input

VIVI

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August 3, 2009

Hola Vivi: Como estas tanto tiempo.- Te coménto que en mi casa tuvimos La " Gripe

A "

Primero mi hijo y Yo.- Mi hijo con Neumonía, estuvo con muchos antibioticos y

Suero en nuestra propia Casa de Familia.- Los primeros tres días no le bajaba la

fiebre de 39 grados aún con inyectables de antifebriles y con los

Antibioticos.- Luego del tercer día comenzó a ceder la enfermedad y gracias a

Dios esta bien hoy.-

Luego que el comenzó a mejorar empece yo con Muchísima tos y con fiebre de 38,8

grados.-

Eso comenzó el día Viernes 26 de Junio y el Sabado por la noche yo ya estaba con

Antibioticos anti-Neumonía el Médico me indico TAMIFLU.- Asi que el Saba<do por

la noche comence con el Tamiflú y el Domingo por la noche ya estaba mucho mejor

gracias a Dios y hoy estoy muy bien.- (Por supuesto que desde aquel dia tengo

suspendido por el reumatólogo el ENBREL)

Luego de una semana despues que yo María Ines comenzó con muchisima tos y fiebre

y tambien con Neumonía.- Estuvo mal dos días pero despues con muchos

Antibioticos mejoró y hoy esta muy bien.- Claro María Ines trabaja de Asistente

Social en el Hospital Local de mi pueblo.-

Los Medicos Creen que los tres tuvimos la " GRIPE A " porque toda mi familia

estabamos vacunados contra la Gripe común as que es altamente probable que

hayamos contraído la Gripe A.

Hoy estamos todos bien .-

Bueno espero noticias tuyas.- Como estas Vos Vivi ?

Un abrazo grande

o

--- El mié 29-jul-09, Vivigriggs@... escribió:

De: Vivigriggs@...

Asunto: Re: April endocrine stuff ( ALL need to rule this out)

Para: Stillsdisease

Fecha: miércoles, 29 de julio de 2009, 10:25 pm