Hi all :)

[Guest guest]

Hi ! It's nice to meet you! My name's

, and I just wanted to tell you that what you're

feeling is pretty normal...though if you're cold ALL of

the time, you may need an adjustment on your

medication! Fatigue and cold sensitivity are VERY common with

hypothyroidism.<br><br>I've had this disease since 1985, and it's no fun at

all! Supportive friends & family help a great

deal...but there's nothing quite like talking about this

stuff with others who have " been there & done that " ,

right? Anytime you need a willing ear, let us

know...this is a VERY SUPPORTIVE group!

[Guest guest]

i'm glad to hear that what i'm feeling is

normal.<br>i'm not cold all the time, it's just getting warm and

staying that way that is the challenge. and, as i

mentioned before, this is my first winter from florida so i

have to adapt to temperatures that are colder now than

anything i ever felt before. <br><br>fatigue has been my

biggest complaint with my hypothyroidism. there are days

when i am fine and others that i have to drag myself

around. i've had my levels checked several times just to

be certain and have a scheduled test coming up next

month. if things get too bad before then, i'll get them

checked earlier. <br><br>although i was diagnosed only

about a year ago,<br>i know that i have suffered with

this illness since childhood. i have been sick most of

my life with the symptoms (especially a few bad

bouts with depression) since i can remember. for

about<br>a year-long period leading up to this, i was almost

bedridden and begged my doctor (a male) to help me. it got

to the point that i had moderate<br>hair loss, i was

always cold, and couldn't do any activities normal of a

college student. i finally switched to a female doctor

who gave me a diagnosis within a week. (my mother

being a mom<br>has suspected i had this since i was

about 8)<br>i later went over blood records that showed

my levels being off at least 4-5 times in a 3

year<br>period. i was very angry that it wasn't caught

sooner...but now i am just relieved to feel somewhat better

than i was before.<br><br>thanks for answering me

julie...i can't express in words how wonderful it feels to

be in a club<br>like this where i can talk about

what i'm feeling and it will be understood. i look

forward to meeting all of you soon. <br><br>shelly

[Guest guest]

Wow...the symptoms sure hit you early in life! Do

you have a family history of thyroid disease, like I

do?<br><br>If you're interested in reading more about my

experiences with TD, visit my homepage (called JWT's Thyroid

Journal) at: <a href=http://www.members.delphi.com/jwthompson

target=new>http://www.members.delphi.com/jwthompson</a>

....it's kinda long, but you might be able to gain some

insight into your own problems by reading about mine!

While you're there, you can link up to a couple of my

other favorite thyroid forums, Woodstock's Thyroid

Disease Forum (where I'm a chat moderator) and the

About.com Thyroid forum. About.com is a lot older than

WTDF, and absolutely jam-packed with great articles and

its active, informative message board! I think you'll

be impressed with both of them!<br><br>If you visit

my thyroid journal, make sure to sign my guestbook

so I'll know you were there! Talk to you

soon!<br><br>

[Guest guest]

Hello, and welcome to the club! I'm usually cold,

but getting warm & staying warm is also a problem for

me.<br><br>I can also relate for your having symptoms of hypo

for years before receiving a diagnosis. I, too, was

cold constantly, suffered from immense fatigue &

menstrual problems, & had other weird symptoms, & saw

several doctors about it & was told there was nothing

wrong with me. My mother has thyroid problems, but even

she didn't think I might have one, too. Finally, I

started getting weird pains in the front of my neck. I

had a doctor check me for it, & only then did he ask

about my family's history of thyroid disorders &

suggest I see an endocrinologist & , several weeks later,

I was diagnosed with Hashi's.<br><br>I don't think

my life is much easier since I was diagnosed last

year. I still have sleep problems & feel fatigue, & I

can never get warm. Also, I don't know too many

people with the disease, & , not knowing anything about

it, they'll tell me, " You're tired because you didn't

get enough sleep last night " or " It's not that

cold--you must be getting sick. " As a result, I'm really

happy I found this club, & I hope you like it here,

too!<br><br>Take care,<br><br><br>I think this club is great,

too.

[Guest guest]

it sounds like we have a lot of the same

symptoms.<br>i have a lot of trouble sleeping at night also and

it is very frustrating to become sleepy at nine (i

go to bed at 10:30-11) wake up around 3-5 and then

get *very* sleepy when i have to wake up at

7.<br><br>i remember my doctor saying that i was so hard to

diagnose because of my age. she said that it is usually

undetected until middle age. i am just relieved that i have

been diagnosed. although my health/life are not

completely what they should be, i am much better off than

being bedridden as i was.<br><br>thanks to everyone for

the posts to me. even though i still feel i am

battling this illness everyday, it helps to hear that i am

not the only one. <br><br>btw, i will be away for the

weekend...i will reply to any posts as soon as i return.

[Guest guest]

Hello to everyone!

I'm not too sure anyone remembers me as I haven't posted since shortly after

I joined the loop back in Sept/Oct. My 3 year old daughter, Jorrie, was

diagnosed with a severe onset of polyarticular JRA back in Sept- affecting

literally every joint in her body both small and large, and the C-spine.

This has caused slight contractures in her knees and elbows, severe

contractures in her hands and wrists, and has also left her ankles, wrists

and feet immobile. Everything has been such a whirlwind, and I think now

that we don't see pedi rheumy again until March, I'm getting rather anxious

(we haven't seen her since mid-December).

She was originally placed on oral MTX and Naproxen. We saw very slight

improvement and then stabilized. So she was changed to MTX injection.

Again, very little improvement and stabilized, so MTX was gradually

increased, each time with the same effect. Currently she is on MTX

(injection), Naproxen, and Enbrel. And once again, very little improvement.

Other therapy regimens include pool & land therapy, OT (we were finally

able to find OT for her!), Kinesio taping and resting hand/wrist splints

that she will not wear.

I think what drove me to finally come back out of the word work is just

needing a place to vent my frustration at really not seeing as much

improvement as I was assured the " wonder drug " (Enbrel) would bring, and I

guess to ask some questions that I'm sure will not be able to be answered,

but the speculation will probably help calm my nerves a bit, hopefully.

She's been on Enbrel for about 3.5 weeks now, which is when I was told I

should start to see some benefit. Well, the only thing we noticed was in

the first week of receiving it, and it was VERY slight (and I cannot stress

these words enough) movement return to her wrists. Anybody have any

suggestions as to the next step? Should I keep her on Enbrel for a little

while longer, or start asking rheumy about other meds? If so, which meds

would be the next step? I want to do some research, but have no clue where

to look. This is also not to mention that I *think* she is having a flair?

Her right knee swelled up the week before last for about 2 days, and she

limped for about 2 hours and was fine after rest. It swelled up again

yesterday evening, with limping last night for about an hour, then was

completely resolved today. She is also running intermittent low grade temps

(99-99.8) lasting about 30-45 mintues. These have been occurring

sporadically without rhyme or reason for about the past 2 weeks, some days

it occurs, other days nothing.

I think the only other pressing question I have is if anyone has ever heard

of the change in diagnosis from poly to systemic without systemic symptoms?

Jorrie's diagnosis was changed to systemic back in November. Other than

above, the only thing I can recollect is that many months prior to her

getting arthritic symptoms, she would run a low-grade fever daily after nap

time- usuallly just about 99, but the highest being 102 once or twice- this

occurred for about 1.5-2 weeks without any other symptoms what-so-ever.

Daycare would call for us to come and pick her up, by the time we got her

home she would be fine, without the help of meds. Rheumy said the change in

diagnosis was mainly due to her labs, but also because of the severity of

the arthritic symptoms and not having but the very slightest response to MTX

and Naproxen (at that time... Now I guess we can add Enbrel to the list,

eh?).

Anyway, sorry for the long letter. I'm just so frustrated at this point-

more so now than when she was first diagnosed, which I didn't think was

possible! Arrrghhhhh!

~Jenn

[Guest guest]

I know it is very hard to wait and see, but you really need to give the Enbrel

more time before giving up on it. It is hard to wait but it is really too early

to change from what we were told. The temperature itself is a systemic symptom.

You don't have to have other organ involvement. And yes, some go from one type

to another to another unfortunately.

Hopefully you will see an improvement soon. I would call the rheumy, if you

haven't done so already, and let them know about the recurring fever. They may

want to see you before March.

e, mom to joe 20 poly + lupus

~*~*~ Jenn ~*~*~ <brinjo@...> wrote:

Hello to everyone!

I'm not too sure anyone remembers me as I haven't posted since shortly after

I joined the loop back in Sept/Oct. My 3 year old daughter, Jorrie, was

diagnosed with a severe onset of polyarticular JRA back in Sept- affecting

literally every joint in her body both small and large, and the C-spine.

This has caused slight contractures in her knees and elbows, severe

contractures in her hands and wrists, and has also left her ankles, wrists

and feet immobile. Everything has been such a whirlwind, and I think now

that we don't see pedi rheumy again until March, I'm getting rather anxious

(we haven't seen her since mid-December).

She was originally placed on oral MTX and Naproxen. We saw very slight

improvement and then stabilized. So she was changed to MTX injection.

Again, very little improvement and stabilized, so MTX was gradually

increased, each time with the same effect. Currently she is on MTX

(injection), Naproxen, and Enbrel. And once again, very little improvement.

Other therapy regimens include pool & land therapy, OT (we were finally

able to find OT for her!), Kinesio taping and resting hand/wrist splints

that she will not wear.

I think what drove me to finally come back out of the word work is just

needing a place to vent my frustration at really not seeing as much

improvement as I was assured the " wonder drug " (Enbrel) would bring, and I

guess to ask some questions that I'm sure will not be able to be answered,

but the speculation will probably help calm my nerves a bit, hopefully.

She's been on Enbrel for about 3.5 weeks now, which is when I was told I

should start to see some benefit. Well, the only thing we noticed was in

the first week of receiving it, and it was VERY slight (and I cannot stress

these words enough) movement return to her wrists. Anybody have any

suggestions as to the next step? Should I keep her on Enbrel for a little

while longer, or start asking rheumy about other meds? If so, which meds

would be the next step? I want to do some research, but have no clue where

to look. This is also not to mention that I *think* she is having a flair?

Her right knee swelled up the week before last for about 2 days, and she

limped for about 2 hours and was fine after rest. It swelled up again

yesterday evening, with limping last night for about an hour, then was

completely resolved today. She is also running intermittent low grade temps

(99-99.8) lasting about 30-45 mintues. These have been occurring

sporadically without rhyme or reason for about the past 2 weeks, some days

it occurs, other days nothing.

I think the only other pressing question I have is if anyone has ever heard

of the change in diagnosis from poly to systemic without systemic symptoms?

Jorrie's diagnosis was changed to systemic back in November. Other than

above, the only thing I can recollect is that many months prior to her

getting arthritic symptoms, she would run a low-grade fever daily after nap

time- usuallly just about 99, but the highest being 102 once or twice- this

occurred for about 1.5-2 weeks without any other symptoms what-so-ever.

Daycare would call for us to come and pick her up, by the time we got her

home she would be fine, without the help of meds. Rheumy said the change in

diagnosis was mainly due to her labs, but also because of the severity of

the arthritic symptoms and not having but the very slightest response to MTX

and Naproxen (at that time... Now I guess we can add Enbrel to the list,

eh?).

Anyway, sorry for the long letter. I'm just so frustrated at this point-

more so now than when she was first diagnosed, which I didn't think was

possible! Arrrghhhhh!

~Jenn

---------------------------------

Don't be flakey. Get for Mobile and

always stay connected to friends.

[Guest guest]

Jenn,

So Sorry to hear about how hard it has been for Jorrie. We are leaving on a

trip tomorrow but I wanted to respond. I remember the days of picking up our

son age 3 from preschool because of a fever, joint pain and stiff neck. He is

now 7, almost 8, and still suffers alot from systemic JRA. We waited so long

for the Enbrel wonder drug and same as you, it did not offer much when we got

it. What we were told by good rheumies was to go next to Kineret ( a daily

shot), or to try one more TNF drug like Remicade or Humira. Then move quickly

to Thalidomide or Rituxan if nothings works. I think it is also worth getting a

lyme test from Igenex if you have not done so. I know we are in the minority in

exploring the lyme issue, but our son has benefited from that treatment and we

had to see lyme specialists to get it because mainstream rheumatologists do not

even use the right test to find lyme disease. We stayed on the Enbrel for a

few months, but I think 2 months was enough to see if it would work (but check

with your doctor there.) Keep trying and believing it will get better. Joint

injections are necessary to when the swelling gets so bad and no meds are

helping. Let me know if I can offer any more help and good luck. jan, son

Louis age 7, systemic, onset age 2.

Hi all

Hello to everyone!

I'm not too sure anyone remembers me as I haven't posted since shortly after

I joined the loop back in Sept/Oct. My 3 year old daughter, Jorrie, was

diagnosed with a severe onset of polyarticular JRA back in Sept- affecting

literally every joint in her body both small and large, and the C-spine.

This has caused slight contractures in her knees and elbows, severe

contractures in her hands and wrists, and has also left her ankles, wrists

and feet immobile. Everything has been such a whirlwind, and I think now

that we don't see pedi rheumy again until March, I'm getting rather anxious

(we haven't seen her since mid-December).

She was originally placed on oral MTX and Naproxen. We saw very slight

improvement and then stabilized. So she was changed to MTX injection.

Again, very little improvement and stabilized, so MTX was gradually

increased, each time with the same effect. Currently she is on MTX

(injection), Naproxen, and Enbrel. And once again, very little improvement.

Other therapy regimens include pool & land therapy, OT (we were finally

able to find OT for her!), Kinesio taping and resting hand/wrist splints

that she will not wear.

I think what drove me to finally come back out of the word work is just

needing a place to vent my frustration at really not seeing as much

improvement as I was assured the " wonder drug " (Enbrel) would bring, and I

guess to ask some questions that I'm sure will not be able to be answered,

but the speculation will probably help calm my nerves a bit, hopefully.

She's been on Enbrel for about 3.5 weeks now, which is when I was told I

should start to see some benefit. Well, the only thing we noticed was in

the first week of receiving it, and it was VERY slight (and I cannot stress

these words enough) movement return to her wrists. Anybody have any

suggestions as to the next step? Should I keep her on Enbrel for a little

while longer, or start asking rheumy about other meds? If so, which meds

would be the next step? I want to do some research, but have no clue where

to look. This is also not to mention that I *think* she is having a flair?

Her right knee swelled up the week before last for about 2 days, and she

limped for about 2 hours and was fine after rest. It swelled up again

yesterday evening, with limping last night for about an hour, then was

completely resolved today. She is also running intermittent low grade temps

(99-99.8) lasting about 30-45 mintues. These have been occurring

sporadically without rhyme or reason for about the past 2 weeks, some days

it occurs, other days nothing.

I think the only other pressing question I have is if anyone has ever heard

of the change in diagnosis from poly to systemic without systemic symptoms?

Jorrie's diagnosis was changed to systemic back in November. Other than

above, the only thing I can recollect is that many months prior to her

getting arthritic symptoms, she would run a low-grade fever daily after nap

time- usuallly just about 99, but the highest being 102 once or twice- this

occurred for about 1.5-2 weeks without any other symptoms what-so-ever.

Daycare would call for us to come and pick her up, by the time we got her

home she would be fine, without the help of meds. Rheumy said the change in

diagnosis was mainly due to her labs, but also because of the severity of

the arthritic symptoms and not having but the very slightest response to MTX

and Naproxen (at that time... Now I guess we can add Enbrel to the list,

eh?).

Anyway, sorry for the long letter. I'm just so frustrated at this point-

more so now than when she was first diagnosed, which I didn't think was

possible! Arrrghhhhh!

~Jenn

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