New here

September 19, 2001

thanks Elaine! I look forward to hearing from !

Jen

September 20, 2001

Hi Jen -

I too was diagnosed with Graves after the birth of my first.

Actually, they first thought it was post partum thyroiditis. It got

better for a couple of months then got worse again and stayed that

way so the diagnosis changed from thyroiditis to Graves.

I nursed while I was on PTU. I did research and reached a comfort

level with using PTU while nursing. I took small doses throughout

the day and night so I had a constant lower level in me. My son is

18 months old now and I have slowly been going into remission. I

dropped from 250 mg of PTU a day to 100 mg and my bloodwork is

continuing to improve so I expect that they will continue to

gradually drop the PTU. The most notable improvement in my bloodwork

did correspond to weaning. So I do think that weaning may improve

one's chances of remission.

Besides the PTU and weaning, I started taking the supplements

suggested by . I really do think they helped. My diet and

exercise has always been healthy so I made no changes there. Before

children I was a practicing 2nd degree black belt in ju-jitsu. Since

children, I have switched to swimming (easier on my back that gets

enough strain picking up and carrying kids).

Both my mother and sister are hypo as a result of RAI and surgery,

respectively. I would caution you to research carefully whether RAI

is the answer. After seeing how being hypo has affected my mother

and sister, I was resolved to attempt remission/control of my Graves

without RAI/surgery. I would not agree with the generalization that

being hypo is better than hyper, if the hyper can be controlled or

brought into remission enough not to be a danger to one's life.

Good luck!

-

> Hi Arlene,

>

> I am new to this list and I was reading your post which mentioned

you are

> taking PTU. I have been taking this medication for about two

months now. I

> hate the taste of it and the aftertaste. I am 27, had my 2nd baby

in April

> and was diagnosed with hyperthyroidism a few months after he was

born. My

> levels have been in a normal range the last couple of blood tests,

(I get my

> blood tested every two weeks) and I take 2 doses of 100mg PTU each

day. How

> long have you been taking PTU? How long have you known you are

> hyperthyroid? I am so grateful to find this support group as I

really don't

> have anyone to talk to about the ups and downs this disease has

caused me!

> As I am still breastfeeding my son, I can't really get a scan until

I am

> done with that and even though I am trying to get him onto a bottle

full

> time, I can't seem to cut out the nighttime feeding. So do you

feel at

> this point that you'll be able to cut down on the PTU? I can't

imagine

> taking it forever. I don't suppose that's even an option for most

people.

> I've heard so many people say it's better to be hypo and hyper and

I'm

> starting to see why. Even my doctor mentioned something along

those lines.

> I am still hoping that the whole thing will go away and that

perhaps it was

> due to a post partum thing caused by breastfeeding but I guess I

won't know

> until I find out if I have the antibody that causes Graves. Is

yours Graves

> or something else? Anyone else care to share their story with me?

I'd

> appreciate any info anyone is willing to tell me! And I'd love to

hear your

> stories about the naturopath experience. I just want to start

feeling like

> myself again and I know my hubby would agree!

>

> Jen in Canada

September 20, 2001

Hi Jen, I see you have already gotten some great advise here. I am also on PTU,

but not a

young mother anymore.

The thing I wanted to mention is the horrible taste. I have been on this stuff

for 3 yr.

now and somewhere along the line I figured out how to take it and not taste it.

I have

never tried to write this down, but here goes.

1. clear mouth of all moisture...shallow

2. roll ( ?) tongue back..this makes a dry, empty space behind your lower front

teeth

3. drop pill there

4. take a medium size swig of water in front of lower teeth, some will go to the

'pill

area', not much

5. then in one smooth motion, flip the whole works quickly back and down. This

requires

practice and a full head movement back.

A trick definitely worth learning = :-o

Good luck, and welcome to the board.

-Pam- in Oregon....glug, glug, glug....who just swallowed a lot of water trying

to figure

out how I do that . LOL

November 19, 2001

Dear ,<br> Welcome to the club. I found

this club plus one other and they are very warm and

supportive here. I have had DDD for 15 years. I just

recently had surgery on my neck. I had three bulging disc

in my neck. They went in and removed my c4,c5,c6 and

took a bone graft from my hip and fused it to my c3 to

my c7 plus put a metal plate with screws. So far so

good. I go back to the doctor next fri. I am hoping at

this time I wont have to wear this hard collar any

more. I have been on pain meds for so long now I am

strugling with the with draw effect. I wasn't born with a

normal cirvical spine and their was to much narrowing in

their and I had a lot of cord compression. Well thats

enought of me. I just wanted to say Hello and

welcome.<br> Dawn

November 19, 2001

Hi ...I am a 42 year old female with

CDD...cervical disk disease and had a 5mm herniation at C5-C6

since last October. I had a new procedure done on

9/27/01 called Percutaneous Endoscopic Cervical

Disectomy. Have you heard of it yet? You can go to the

doctors website at www.spinecenter.com It is a minimally

invasive spine surgery. I am doing so much better now

since I had this surgery.

November 20, 2001

Welcome, .<br>I hope you find the support here that I have and continue

to. Dont forget the main forum at spinaldisorders.org .<br>Vern

November 20, 2001

OOOPs, meant spinedisorders.org..

March 12, 2002

Welcome Tina!

I have a 7 yr old son and I pray that your granddaughter finds relief soon! I don't know much about JRA, but my heart is with you and your baby.

Kelli

March 13, 2002

Tina,

It is a crying shame that little children are sometimes cursed with

these debilitating and sometimes defacing diseases before they've

even had a chance to begin their lives - that's part of the reason

I'm an atheist (ie; I cannot believe such a malevolent " God " could

exist). In any case, I know nothing about JRA except what I just read

at

http://www.niams.nih.gov/hi/topics/juvenile_arthritis/juvarthr.htm#4

Your mention of thinking back to when she used an " 'ace' bandage when

younger to wrap her BOOBOO legs or arm! " made me wonder if perhaps

the rash could actually be psoriasis lesions, and that perhaps she

has Psoriasis and Psoriatic Arthritis rather than JRA. Little

children do indeed contract Psoriasis and Psoriatic Arthritis at a

very early age. There are pictures of psoriatic lesions at

http://www.psoriasis.org/b200.htm and in fact, the National Psoriasis

Foundation (NPF) has a special section for Kids, Youths, and Teens

with Psoriasis and Psoriatic Arthritis at

http://www.psoriasis.org/f000.htm

On this particular " rheumatic " forum where you posted your message,

we here are of the belief that rheumatic diseases are caused by a

unique form of bacteria called " mycoplasmas " without cell walls that

can be eradicated by use of long-term low dose antibiotics

(minocycline, doxycycline, and tetracycline), particularly when

caught at an early stage. There are many scientific studies that

support this viewpoint, and many individual success stories posted in

the archives of this forum (I am one of the success stories). Before

handing your young daughter over to the mainstream medical profession

that normally prescribe harsh and life threatening " therapies " that

merely mask the symptoms and ultimately result in long term and

sometimes permanent damage to her health, I hope that you investigate

antibiotic therapy. Two reputable sources for information are the

Road Back Foundation at http://www.roadback.org/index.shtml and

http://www.rheumatic.org/

There are also forums for those with Psoriatic Arthritis at

psoriatic arthritis/messages and for

those with Psoriasis at

psoriasis_support/messages but the most

authoritative source for information is the National Psoriasis

Foundation (NPF) at http://www.psoriasis.org/

There are hundreds if not thousands of autoimmune diseases, and I

sincerely hope that your daughter has some less serious form of one

that can be cured (or at least alleviated) relatively easily. My

heartfelt best wishes go out to your, your daughter, and to your

family. If there is any information or help that I or any other

members of this forum or the other forums or web sites I've mentioned

can provide, please ask and do not hesitate to contact me personally

at rkba@... or other members of this or other on-line forums.

We are not doctors (with one or two exceptions), but most of us do

have very long term and extensive experience with a multiplicity of

drugs used against so called " autoimmune " diseases.

Please accept my very best wishes for you, and for the complete

recovery of your daughter,

-- Ron Dotson

> Hello , I am Tina and live in Pennsylvania, My 7 yr old grand

> daughter was prediagnosed on Feb 22 with JRA,but has not seen

> a specialist as of yet.

>

> Her original appointment that made this diagnosis was a

> Allergist as she was seeing him for hives,this was her

> second bout with hives( first May 2001 and then end of

> January.

>

> with the hives she had elevatd fever this time and also then

> joint pain we did not know if we were looking at 1 ,2, or3

> differnt conditions going on at one time...

>

> After seeing the allergist and his conclusions were that there

> was something else causing the hives other than a allergy he

> did extensive blood work testing,( she ws seen in a ER for

> the leg pain two days before as we thought she hurt her leg

> somehow and they their diagnosis was it was something VIRAL)

> well anyways the report from the allergist was that she had

> Inflamation and would say it was JRA.

>

> UPon going on the internet and getting information on JRA , we

> are just saying it fits her and now hoping it turns out to be

> the acute type...Praying actually if it has to be JRA let it

> be the Acute.

>

> SInce then she has had high fevers and leg pains only

> relieving with childrens tylnenol.

>

> We wanted an second opinion while waiting for a specialist

> appt at the med center where she has been affiliated with

> since birth.

>

> We called the Shriners Hospital in Philadelphia and got an

> appointment right away for March 21, we are just counting the

> day til we go there as of yet the original refferal appt to a

> Specialist with that Med center has not been made. So

> Thankfull for the Shriners or we would be really lost as where

> to go next.

>

> It is 110 miles away so we are hoping for a treatment plan

> that can be followed up with her regualar dr. But we are

> aware there will be trips to Philadelphia during these early

> diagnostic times.

>

> I do not have any idea of what they are prescribing or what is

> going to happen next. For the hives she was given steriod

> shots and also a liquid steriod which I am jsut guessing from

> reading on the JRA information that they can aggitate JRA.

>

> We are wondering if the hives were due to it as a RASH is

> listed as one of the symptoms though I did not really think

> of hives as just a rash .

>

> She may have had this a long time as she never could pedal a

> bike, run like other kids,and thinking back used a " ace "

> bandage when younger to wrap her BOOBOO legs or arm!

> Complained of her legs being tired,or hurt or arm hurt, and

> several time was x-rayed or check out never could find

> anything.

>

> well this is a long into and I do not even know if I fit in

> here for what I am encountering as there are many lists and I

> thought to pick this one cause of the membership and I could

> possibly connect with what we are against in the time to

> come.

>

> Thank you Tina

March 13, 2002

Hi Tina, I'm sorry to hear your little one is ill. I worry about my 3 year old whenever she complains of joint pains now and again. The doctor assures me that it is growing pains.

I was wondering if maybe she should get checked for Lyme. I think I've read that the woodsy New England states have a high incedence of Lyme disease. Perhaps that is the reason for the hives/rash. I hope they can get her condition in check quickly.

Take care,

Kimmie

rheumatic Re: NEW HERE

Tina,It is a crying shame that little children are sometimes cursed with these debilitating and sometimes defacing diseases before they've even had a chance to begin their lives - that's part of the reason I'm an atheist (ie; I cannot believe such a malevolent "God" could exist). In any case, I know nothing about JRA except what I just read athttp://www.niams.nih.gov/hi/topics/juvenile_arthritis/juvarthr.htm#4Your mention of thinking back to when she used an "'ace' bandage when younger to wrap her BOOBOO legs or arm!" made me wonder if perhaps the rash could actually be psoriasis lesions, and that perhaps she has Psoriasis and Psoriatic Arthritis rather than JRA. Little children do indeed contract Psoriasis and Psoriatic Arthritis at a very early age. There are pictures of psoriatic lesions at http://www.psoriasis.org/b200.htm and in fact, the National Psoriasis Foundation (NPF) has a special section for Kids, Youths, and Teens with Psoriasis and Psoriatic Arthritis at http://www.psoriasis.org/f000.htm On this particular "rheumatic" forum where you posted your message, we here are of the belief that rheumatic diseases are caused by a unique form of bacteria called "mycoplasmas" without cell walls that can be eradicated by use of long-term low dose antibiotics (minocycline, doxycycline, and tetracycline), particularly when caught at an early stage. There are many scientific studies that support this viewpoint, and many individual success stories posted in the archives of this forum (I am one of the success stories). Before handing your young daughter over to the mainstream medical profession that normally prescribe harsh and life threatening "therapies" that merely mask the symptoms and ultimately result in long term and sometimes permanent damage to her health, I hope that you investigate antibiotic therapy. Two reputable sources for information are the Road Back Foundation at http://www.roadback.org/index.shtml and http://www.rheumatic.org/There are also forums for those with Psoriatic Arthritis at psoriatic arthritis/messages and for those with Psoriasis at psoriasis_support/messages but the most authoritative source for information is the National Psoriasis Foundation (NPF) at http://www.psoriasis.org/There are hundreds if not thousands of autoimmune diseases, and I sincerely hope that your daughter has some less serious form of one that can be cured (or at least alleviated) relatively easily. My heartfelt best wishes go out to your, your daughter, and to your family. If there is any information or help that I or any other members of this forum or the other forums or web sites I've mentioned can provide, please ask and do not hesitate to contact me personally at rkba@... or other members of this or other on-line forums. We are not doctors (with one or two exceptions), but most of us do have very long term and extensive experience with a multiplicity of drugs used against so called "autoimmune" diseases. Please accept my very best wishes for you, and for the complete recovery of your daughter,-- Ron Dotson> Hello , I am Tina and live in Pennsylvania, My 7 yr old grand> daughter was prediagnosed on Feb 22 with JRA,but has not seen> a specialist as of yet.> > Her original appointment that made this diagnosis was a> Allergist as she was seeing him for hives,this was her> second bout with hives( first May 2001 and then end of> January.> > with the hives she had elevatd fever this time and also then> joint pain we did not know if we were looking at 1 ,2, or3> differnt conditions going on at one time...> > After seeing the allergist and his conclusions were that there> was something else causing the hives other than a allergy he> did extensive blood work testing,( she ws seen in a ER for> the leg pain two days before as we thought she hurt her leg> somehow and they their diagnosis was it was something VIRAL)> well anyways the report from the allergist was that she had> Inflamation and would say it was JRA.> > UPon going on the internet and getting information on JRA , we> are just saying it fits her and now hoping it turns out to be> the acute type...Praying actually if it has to be JRA let it> be the Acute.> > SInce then she has had high fevers and leg pains only> relieving with childrens tylnenol.> > We wanted an second opinion while waiting for a specialist> appt at the med center where she has been affiliated with> since birth.> > We called the Shriners Hospital in Philadelphia and got an > appointment right away for March 21, we are just counting the> day til we go there as of yet the original refferal appt to a> Specialist with that Med center has not been made. So> Thankfull for the Shriners or we would be really lost as where> to go next.> > It is 110 miles away so we are hoping for a treatment plan> that can be followed up with her regualar dr. But we are> aware there will be trips to Philadelphia during these early> diagnostic times.> > I do not have any idea of what they are prescribing or what is> going to happen next. For the hives she was given steriod> shots and also a liquid steriod which I am jsut guessing from> reading on the JRA information that they can aggitate JRA.> > We are wondering if the hives were due to it as a RASH is> listed as one of the symptoms though I did not really think> of hives as just a rash .> > She may have had this a long time as she never could pedal a> bike, run like other kids,and thinking back used a "ace"> bandage when younger to wrap her BOOBOO legs or arm!> Complained of her legs being tired,or hurt or arm hurt, and> several time was x-rayed or check out never could find> anything.> > well this is a long into and I do not even know if I fit in> here for what I am encountering as there are many lists and I> thought to pick this one cause of the membership and I could> possibly connect with what we are against in the time to> come.> > Thank you TinaTo unsubscribe, email: rheumatic-unsubscribeegroups

March 26, 2002

In a message dated 03/26/2002 2:27:39 PM Pacific Standard Time, bubblesfrog@... writes:

I feel like this

doctor is ignoring me too. Should I keep pursuing this?

Bubbles,

In a word, YES! I agree with you that I think your doctor is ignoring you. Symptoms such as you're experiencing ARE important! Find another doc, asap! Look for one who is more willing to treat your symptoms rather than just your numbers. Check out www.thyroid.about.com; you'll see your TSH numbers are NOT normal! Also check out www.wilsonsthyroidsyndrome.com for a list of symptoms. Also do a search on Google for "Gail's Thyroid Tips," print it and read it. Gail is great! And she really helps you want to stay determined until you get good care!

Write back to let us know how you're doing!

in LA

"We are each responsible for our own life--no other person is or even *can* be." Oprah Winfrey

March 26, 2002

Yes, I think you could have Hashimoto's. I have Hashimoto's and my

doctor did a thyroid scan in addition to all the other tests. Sure

enough, the thyroid scan showed that my thyroid was enlarged and a

goiter was developing. Please share that information with your doctor

and ask him/her to arrange a thyroid scan for you.

Celeste

bubblesfrog wrote:

> Hi all. I've been reading the posts for the past week or so and

> decided to post myself. My hair started falling out last year and

> when I went to the doctor I had several blood tests done. One of the

> tests that was out of range was my TSH-it was 5.11. But the doctor

> did not seem too concerned at the time and I didn't really know much

> about the thyroid to question him. Well my hair has continued to

> fall out and I went to another doctor week before last. My throat

> has also had a fullness and has just been very uncomfortable. My TSH

> and T4 levels were normal and so were the thyroid antibodies. TSH

> was 2.35. I just don't know what I should do. I feel like this

> doctor is ignoring me too. Should I keep pursuing this? Could it be

> Hashimoto's? I've read that the thyroid can act normal w/

> Hashimoto's and just flare up.

March 27, 2002

GET A NEW DOC!!! i have had that same feeling. your thyroid is WAY

undertreated! your level should be somewhere between 5 and 10. 2 is

too low! what kind of med are you taking, if any? last time my blood

was tested it was around 2 and they doubled my dosage. i was

diagnosed last summer (2001) and i have had to go back every 6 weeks

to ensure regulation and keep it up to date. but i can understand

that fullness. i hate it! but you need a new doc, ok?

> > Hi all. I've been reading the posts for the past week or so and

> > decided to post myself. My hair started falling out last year and

> > when I went to the doctor I had several blood tests done. One of

the

> > tests that was out of range was my TSH-it was 5.11. But the

doctor

> > did not seem too concerned at the time and I didn't really know

much

> > about the thyroid to question him. Well my hair has continued to

> > fall out and I went to another doctor week before last. My throat

> > has also had a fullness and has just been very uncomfortable. My

TSH

> > and T4 levels were normal and so were the thyroid antibodies. TSH

> > was 2.35. I just don't know what I should do. I feel like this

> > doctor is ignoring me too. Should I keep pursuing this? Could it

be

> > Hashimoto's? I've read that the thyroid can act normal w/

> > Hashimoto's and just flare up.

March 27, 2002

Celeste,

what should be between 5 and 10? If her TSH was 2, then that's good. Yeah,

there may be other hormones that need to be tested but that level is well in

the range.

----Original Message Follows----

From: " tygrr94 " <tygerr94@...>

Reply-hypothyroidism

hypothyroidism

Subject: Re: new here

Date: Wed, 27 Mar 2002 01:13:38 -0000

GET A NEW DOC!!! i have had that same feeling. your thyroid is WAY

undertreated! your level should be somewhere between 5 and 10. 2 is

too low! what kind of med are you taking, if any? last time my blood

was tested it was around 2 and they doubled my dosage. i was

diagnosed last summer (2001) and i have had to go back every 6 weeks

to ensure regulation and keep it up to date. but i can understand

that fullness. i hate it! but you need a new doc, ok?

_________________________________________________________________

MSN Photos is the easiest way to share and print your photos:

http://photos.msn.com/support/worldwide.aspx

March 27, 2002

,

I don't know. I wasn't the one who replied.

Celeste

Pierce wrote:

> Celeste,

> what should be between 5 and 10? If her TSH was 2, then that's

good. Yeah,

> there may be other hormones that need to be tested but that level is

well in

> the range.

>

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

> From: " tygrr94 " <tygerr94@e...>

> Reply-hypothyroidism@y...

> hypothyroidism@y...

> Subject: Re: new here

> Date: Wed, 27 Mar 2002 01:13:38 -0000

>

> GET A NEW DOC!!! i have had that same feeling. your thyroid is WAY

> undertreated! your level should be somewhere between 5 and 10. 2

is

> too low! what kind of med are you taking, if any? last time my

blood

> was tested it was around 2 and they doubled my dosage. i was

> diagnosed last summer (2001) and i have had to go back every 6 weeks

> to ensure regulation and keep it up to date. but i can understand

> that fullness. i hate it! but you need a new doc, ok?

>

> _________________________________________________________________

> MSN Photos is the easiest way to share and print your photos:

> http://photos.msn.com/support/worldwide.aspx

March 27, 2002

In a message dated 03/27/2002 6:03:39 AM Pacific Standard Time, bubblesfrog@... writes:

Has anyone ever had a

throbbing pain in the neck? Or feel it when you turn your head a

certain way?

Yes, that's what it can feel like when the thyroid gets inflamed. Do you know about avoiding certain foods that contribute to inflamation? Soy, broccoli, cauliflower, etc?

As far as switching docs, I would in your position. He doesn't sound very sympathetic.

in LA

"We are each responsible for our own life--no other person is or even *can* be." Oprah Winfrey

March 27, 2002

I am wondering if I should just go straight to an endocrinologist and

not even deal w/ the family doctor anymore. Has anyone ever had a

throbbing pain in the neck? Or feel it when you turn your head a

certain way?

> Hi all. I've been reading the posts for the past week or so and

> decided to post myself. My hair started falling out last year and

> when I went to the doctor I had several blood tests done. One of

the

> tests that was out of range was my TSH-it was 5.11. But the doctor

> did not seem too concerned at the time and I didn't really know

much

> about the thyroid to question him. Well my hair has continued to

> fall out and I went to another doctor week before last. My throat

> has also had a fullness and has just been very uncomfortable. My

TSH

> and T4 levels were normal and so were the thyroid antibodies. TSH

> was 2.35. I just don't know what I should do. I feel like this

> doctor is ignoring me too. Should I keep pursuing this? Could it be

> Hashimoto's? I've read that the thyroid can act normal w/

> Hashimoto's and just flare up.

> Thanks for letting me vent.

April 2, 2002

Hi Judy,

{ I'm a newby! My name is Judy. I'm almost 54, been married 38 years, 6

grown children and 9 grandchildren and was a RN before becoming disabled 3

1/2 years ago. }

I'm somewhat a newbie too, age 47, two grown children, newly married to a

sweet guy 20 years my junior, unemployed.

{ The doctor thinks I got hep c from transfusions in the late 70's. April 11

is my appt for discussing treatment. Yes, I am worried. }

I think deep down inside, whether it's shown or not, we are all worried, but

I've have learned the hard way that worry creates stress and stress creates

lots of horrible other things. Some of us will never really know for

certain when we got the hepatitis. I only know that I was so sick at the

time and in the hospital for so long, I can hardly remember anything ---

that was over 30 years ago. But, in the end of things, it doesn't matter

where or when we got it. All that matters is that as of now, we are

starting life new and things have to change --- lifestyle, sometimes diet,

and emotional and intellectual attitudes.

{ Someone spoke about pain in the right side. I have had gallbladder like

pain in my right side for at least 25 years. I have had the gallbladder

checked 6 different times during those years and it always comes back

normal, no problems. }

I have a pain on the right side too --- it started suddenly when the ER gave

me Vioxx. I reacted violently to the drug. That was probably three weeks

ago or thereabouts. They can't find anything wrong, no reason for the pain

other than maybe a pinched nerve, go figure, I dunno. I had my gallbladder

out last year in May as a result of pancreatitis, and the abdominal area

just hasn't been the same since. I put on 60 pounds of fat as a result of

that quitting smoking at the same time. My gastro doctor very strongly

stressed that to be overweight with hepaptitis c is a big no-no (the

treadmill gets delivered tomorrow)...

{ I had fatigue during those years and several times became anemic and had

to get iron shots. I just thought I was lazy and kept

pushing on. I always believed illness happened to other people and if I

didn't think I was ill, I wasn't. I have sure gone through many changes the

last few years. }

I can remember falling asleep in high school and every job I ever had... I

remember a doctor in California who diagnosed me CFS, Chronic Fatigue

Syndrome... now I have to laugh.

{ Right now I'm afraid the doctor might say I wouldn't qualify for treatment

because of my other physical problems. }

If your doctor thinks treatment might not be a good idea, then you have a

few other options really. Make sure your weight stays down, start eating

healthier, and drink lots and lots of water. I don't like water but I'm

pushing myself to drink it.

Keep your chin up... *hugs*

Princess (a) wistful@...

April 2, 2002