Newly diagnosed

[Guest guest]

Tamy,

If you don't mind would you please share your experience with taking PTU

again. I just started my treatment on it in Feb.

--------- newly diagnosed

Hi there,

I was diagnosed with graves disease last week. I have had an

undetectable THS for about 9 months, positive for antibodies. Now my

T3 is also elevated. I don't have many symtoms, I think....my typical

heart rate is in the 50's, last month at the doctors it was 80 and the

other day 100. That is the biggest thing I have noticed. I am

scheduled for an uptake and scan June 21, the endo will then decide

what corse of action. I am allergic to sulfa and he said the meds he

had in mind both contain sulfa?? I am hoping that that is far as they

will have to go, we are hoping for remission. I unfortunately have

some eating issues and the thought of going into hypo and gaining all

that weight scares me to death. I haven't lost any weight from the

hyper yet? I have lots of questions, from readng the posts, looks

like a nice group here.

would love to hear from you,

Tig

[Guest guest]

Greetings from another long lost soul !

Hi Kate and Aunt Joan !

I must apologies for not doing my yearly check in with this list, to

celebrate my remission.

I'm still truckin' along. :-D

Same here... allergic to sulfa, and no problems with my PTU.

My endo said the chemical formula of sulfa in both ATDs is different that

the drugs we normally have problems with.

This is easy o confirm.

Google both ATD names... find manufactures package insert...it will be the

one with a PFD file type.

Notice... NO warnings about sulfa allergies.

Now... for example... Google the beta blocker Atenolol... see the sulfa

warning ?

***Next... do NOT be alarmed by the list of potential side effects listed on

all ATDs... those are hypo symptoms ! That means taking too much, results in

becoming hypothyroid until the dose is lowered... which must always be done

AFTER lab tests confirm .

Be aware a total T3 test is not the correct test. That changes according to

your time of the month.

Correct test is a FreeT3 and FreeT4... those measure thyroid hormone only.

I shall add my signature for you, :-)

-Pam L - Almostcrazy

3 1/2 years Graves', TED, and PTU.

Remission since Jan. 28th. 2002 !

Key: SLOW reduction of PTU , eight hour dosing,labs every 4 weeks, improved

lifestyle, herbs, REAL food/ no processed pre-made food, and looking at the

big picture.

Triggers are: MSG/any 'flavorings', glutamates ,aspartame, pesticides,high

iodine foods.

_ _ _____________________________________________ _ _

Pills alone only help the symptoms. We must help our bodies to heal.

[Guest guest]

Tammy,

that is music to my ears. I was very concerned that I wouldn't be

able to try the PTU or have a horrible reaction. The doctor

thought the sulfa might not cross over or something.

Thank you very much,

Tig

> Tamy,

> If you don't mind would you please share your experience with

taking PTU again. I just started my treatment on it in Feb.

>

>

> --------- newly diagnosed

>

>

> Hi there,

> I was diagnosed with graves disease last week. I have had an

> undetectable THS for about 9 months, positive for antibodies. Now

my

> T3 is also elevated. I don't have many symtoms, I think....my

typical

> heart rate is in the 50's, last month at the doctors it was 80 and

the

> other day 100. That is the biggest thing I have noticed. I am

> scheduled for an uptake and scan June 21, the endo will then decide

> what corse of action. I am allergic to sulfa and he said the meds

he

> had in mind both contain sulfa?? I am hoping that that is far as

they

> will have to go, we are hoping for remission. I unfortunately have

> some eating issues and the thought of going into hypo and gaining

all

> that weight scares me to death. I haven't lost any weight from the

> hyper yet? I have lots of questions, from readng the posts, looks

> like a nice group here.

>

> would love to hear from you,

> Tig

>

>

>

>

>

>

>

[Guest guest]

So Kate,

Is the hard part of being hypo, the tiredness, weigh gain or what.

Everyone makes it sound like treating hypo is a breeze, but hyper is

dangerous?? Did you lose weight when you were hyper and that is why

the bone density issue? What can you do once you have lost that

density?

Thanks for you post,

Tig

> >

> > Welcome Tig!

> >

> >

> > -------------- Original message --------------

> > Hi there,

> > I was diagnosed with graves disease last week. I have had an

> > undetectable THS for about 9 months, positive for antibodies.

Now

> my

> > T3 is also elevated. I don't have many symtoms, I think....my

> typical

> > heart rate is in the 50's, last month at the doctors it was 80

and

> the

> > other day 100. That is the biggest thing I have noticed. I

am

> > scheduled for an uptake and scan June 21, the endo will then

> decide

> > what corse of action. I am allergic to sulfa and he said the

meds

> he

> > had in mind both contain sulfa?? I am hoping that that is far

as

> they

> > will have to go, we are hoping for remission. I unfortunately

> have

> > some eating issues and the thought of going into hypo and

gaining

> all

> > that weight scares me to death. I haven't lost any weight

from

> the

> > hyper yet? I have lots of questions, from readng the posts,

looks

> > like a nice group here.

> >

> > would love to hear from you,

> > Tig

> >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

Hi Pam,

thanks for the post, I believe my endo is hoping for remission as

well as I. My thyroid problems were caught in a routine blood test.

my tsh was 0.03, so they retest and then it .00. That was about 8

months ago, I am positive for antiboties and my T3 is elavated. I

am so happy the PTU does not matter with a sulfa allergy.

I am scheduled to have the uptake and thyroid scan, can anyone

explain what I am to expect. 6 hour test!

It sounds like some people gain weight hyper and others gain weight

hypo?? Also does synthroid make you gain weight??

I have not lost any weight, but on the weekends feel exhausted.

I guess we will take this one day at a time.

Thanks for taking the time:)

Tig

> Greetings from another long lost soul !

> Hi Kate and Aunt Joan !

> I must apologies for not doing my yearly check in with this list,

to

> celebrate my remission.

> I'm still truckin' along. :-D

>

> Same here... allergic to sulfa, and no problems with my PTU.

> My endo said the chemical formula of sulfa in both ATDs is

different that

> the drugs we normally have problems with.

>

> This is easy o confirm.

> Google both ATD names... find manufactures package insert...it

will be the

> one with a PFD file type.

> Notice... NO warnings about sulfa allergies.

>

> Now... for example... Google the beta blocker Atenolol... see the

sulfa

> warning ?

>

> ***Next... do NOT be alarmed by the list of potential side effects

listed on

> all ATDs... those are hypo symptoms ! That means taking too much,

results in

> becoming hypothyroid until the dose is lowered... which must

always be done

> AFTER lab tests confirm .

>

>

> Be aware a total T3 test is not the correct test. That changes

according to

> your time of the month.

> Correct test is a FreeT3 and FreeT4... those measure thyroid

hormone only.

>

> I shall add my signature for you, :-)

>

>

> -Pam L - Almostcrazy

>

> 3 1/2 years Graves', TED, and PTU.

> Remission since Jan. 28th. 2002 !

> Key: SLOW reduction of PTU , eight hour dosing,labs every 4 weeks,

improved

> lifestyle, herbs, REAL food/ no processed pre-made food, and

looking at the

> big picture.

> Triggers are: MSG/any 'flavorings', glutamates ,aspartame,

pesticides,high

> iodine foods.

> _ _ _____________________________________________ _ _

> Pills alone only help the symptoms. We must help our bodies to

heal.

>

>

[Guest guest]

Tig,

What antibodies ?

Why a scan ?

Are you aware the scan is useless except to judge the dose needed of RAI ?

It pretty much only tell what you had for lunch the last week or so... did

you know that ?

The scan can cause real problems too.

Uptake scans contain radiation... which causes antibody increase... and a

huge amount of iodine! Which will cause you to become more hyper for about a

month, it increases antibodies, and it can worsen or cause thyroid eye

disease to make itself known... where without the scan, the patient may

never had been stimulated enough to get TED.

The type of radiation used has a longer half life than the one they ablate

the thyroid with... just to add insult to injury.

Now if you have cancer it's a whole different story... but it sounds like

your just talking about slight hyper...

Ugh... am I in time ?

-Pam L-

[Guest guest]

Wow, that was a great post! That made a lot of sense, about the replacement

hormones not supplying all that the thyroid needs, I'd never heard that before.

Like you, I resisted the " wisdom " of the doctors, and found my own path to

healing. I have been cured from Graves for almost 7 years, but, like you said,

should I ever go hyper again, I just will get onto meds right away--I know

exactly what to look for.

You sound like quite a free spirit, and I can relate.

Be well,

AntJoan

[Guest guest]

I had originally been thinking hypo must be so much easier than hyper. I have

been having a lot of awful symptoms with hyper but after reading posts from

people who have become hypo I think both are very difficult to live with. In

some ways it almost sounds worse to gain weight, be tired a lot and depressed

with hypo. My Mom is dealing with hypo right now and from talking to her and

reading posts on this board and another general thyroid board it can be really

hard for people to find the right dose of thyroid supplement whether it be

synthetic or natural. It is much more complicated than just taking a pill every

day for the rest of your life. I am concerned that some docs act like it is no

big deal to radiate and/or by surgery cause someone to be permanently hypo. I

would encourage you to try and wait and see if PTUs help before embarking on any

of the other two traditional types of treatments unless the doctor is telling

you you have some serious reason you can't wait. Hope this isn't too much

advice giving.

P.S. My doc wouldnt' do a bone density test for me because she said I am too

young to warrant it. I am 38. Do you all think I should try to get one done

somewhere. I think there is a free heel one done at one of the hospitals around

here. Does anyone know anything about those?

-------------- Original message --------------

So Kate,

Is the hard part of being hypo, the tiredness, weigh gain or what.

Everyone makes it sound like treating hypo is a breeze, but hyper is

dangerous?? Did you lose weight when you were hyper and that is why

the bone density issue? What can you do once you have lost that

density?

Thanks for you post,

Tig

> >

> > Welcome Tig!

> >

> >

> > -------------- Original message --------------

> > Hi there,

> > I was diagnosed with graves disease last week. I have had an

> > undetectable THS for about 9 months, positive for antibodies.

Now

> my

> > T3 is also elevated. I don't have many symtoms, I think....my

> typical

> > heart rate is in the 50's, last month at the doctors it was 80

and

> the

> > other day 100. That is the biggest thing I have noticed. I

am

> > scheduled for an uptake and scan June 21, the endo will then

> decide

> > what corse of action. I am allergic to sulfa and he said the

meds

> he

> > had in mind both contain sulfa?? I am hoping that that is far

as

> they

> > will have to go, we are hoping for remission. I unfortunately

> have

> > some eating issues and the thought of going into hypo and

gaining

> all

> > that weight scares me to death. I haven't lost any weight

from

> the

> > hyper yet? I have lots of questions, from readng the posts,

looks

> > like a nice group here.

> >

> > would love to hear from you,

> > Tig

> >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

Sounds pretty smart for a young yun' Nichole.

Re: hypo being easier to treat... that is true IF and only IF the person has

a functioning thyroid gland supplying most of the numerous hormones the

gland makes.

The synthetic and animal derived thyroid pills they manufacture only supply

T4 and T3.

Look up thyroid hormones in the more advanced web sites, and you will find

much more than these two are made.

Also the thyroid gland in a normal person responds in a moments notice if

extra hormone is needed. It also slows down the supply if we are sick and

need to rest and heal.

Pills can only supply one steady flow. That's where those on replacement

thyroid hormone have problems mostly. It just never FEELS normal. With no

gland at all, they must learn to accept and deal with this problem, each in

their own way. Some do well, and learn to accept the difference.

Personally I would never be one of those people. I have been over medicated

for three years on PTU... before I got a computer, and access to information

I did horribly.

I have always been one of those very active, energizer bunny type of women,

and my emotions and passions are extremely strong. To me, it is normal to

feel swings up and down. That is the beauty and intensity of life that makes

it worth living.

I wear bright colors, sing, dance, paint, sculpt, work with wood, and am a

garden designer and builder as my current trade. I get intensely happy at

times and over excited. Yes, the price for this is also feeling sadness

perhaps more deeply than some...but this is my preference.

People that meet me always remember me, and I hope it's because they find me

interesting. They do use the words special, unique and memorable if I get

to know them well enough to ask why. We can be sure there must be some that

use the words different or weird too. lol

The thyroid gland effects every cell in our body. By now you probably

already understand how greatly it affects our intellect and emotions. Much

less heart rate and aches and pains .

Perhaps average, non-emotional people are the ones that do well with that

even stream of hormone ??? I don't know, I just know having experienced it,

I could never live that way . It's just not a fit for me. I know there are

people like that out there... and I think they're the weird ones... and I

feel sorry for them. They lack passion and curiosity to my way of seeing

things .They do seem to be the majority though.

So... should I ever happen to go hyper again... I'm back on the drugs. No

biggie.

I have many friends that have ended up going hyper again... and none of them

have ever had any problems. It's never like the first time... when we had no

idea what was wrong, and things got so bad. My friends just think maybe they

should get labs and check... and they always catch hyper very early and can

start on a pretty low dose of the drugs, so within a month they are pretty

close to their set point, and life is normal once again.

See they catch it before the heart rate goes up, or the anxiety sets in.

Doctors do us a great disservice telling us to be afraid of going hyper

again. To use that as a scare tactic to trying to get us to accept a life

long disability of hypo...is insulting to my way of thinking.

Do they think I am so dumb I won't notice, and if I do... I will not bother

to get labs and fill a scrip?

Yes... I do question authority. I judge each person as an individual no

matter what their job tittle.

This includes doctors. They are not gods. They have no right to attempt to

skew my view of simple data. Simple data about thyroid disease is not rocket

science.

Stick with the Gravesien's Tig*... we are thinking people.

-Pam L-

-Pam L - Almostcrazy

3 1/2 years Graves', TED, and PTU.

Remission since Jan. 28th. 2002 !

Key: SLOW reduction of PTU , eight hour dosing,labs every 4 weeks, improved

lifestyle, herbs, REAL food/ no processed pre-made food, and looking at the

big picture.

Triggers are: MSG/any 'flavorings', glutamates ,aspartame, pesticides,high

iodine foods.

_ _ _____________________________________________ _ _

Pills alone only help the symptoms. We must help our bodies to heal.

[Guest guest]

Hi Tig

The problem to me with being hypo is the loss of energy. And the fact that I

must always watch what I eat, and I gain weight even so. I'm always tired.

Always. I started to gain weight when I was hyper. I wasn't eating well - just

anything at all because I was so hungry. But my appetite outmatched my

metabolism and I ended gaining 40 pounds in six months. I have never lost much

weight since then. Occassionally when I go hypo (yes, even while on replacement

hormone this happens), I get too tired to care and don't eat at all. Then I

will lose about a pound a week. But being that hypo is not good. I also get

lost when I'm driving somewhere, not knowing where I am. I don't remember

anything, and all I do is sleep.

As for the osteoporosis, there are two basis treatments. One involves being

placed on a prescribed drug like Fossamax and taking supplementary calcium. The

other involves being placed on Hormone Replacement Therapy (HRT) and taking

supplementary calcium. I tried both - and after annual bone density scans it

was found that I did better with the HRT and Calcium route. So I took HRT for

about 4 years along with 1200mg calcium daily. Now I just take the calcium. I

had superb improvement in my spine. The osteoporosis does not exist there

anymore. But my hips did not improve - they just slowed down the loss of

calcium. So I'm a little nervous of falling and I take calcium still. Calcium

needs to be taken at least 4 hours away from thyroid medicine and the dosage

needs to be broken up - not one big dose daily. You can find out lots by

reading about osteoporosis online. Just do a google search on osteoporosis and

you will find more material than you will ever read...

Kate Re: newly diagnosed

So Kate,

Is the hard part of being hypo, the tiredness, weigh gain or what.

Everyone makes it sound like treating hypo is a breeze, but hyper is

dangerous?? Did you lose weight when you were hyper and that is why

the bone density issue? What can you do once you have lost that

density?

Thanks for you post,

Tig

> >

> > Welcome Tig!

> >

> >

> > -------------- Original message --------------

> > Hi there,

> > I was diagnosed with graves disease last week. I have had an

> > undetectable THS for about 9 months, positive for antibodies.

Now

> my

> > T3 is also elevated. I don't have many symtoms, I think....my

> typical

> > heart rate is in the 50's, last month at the doctors it was 80

and

> the

> > other day 100. That is the biggest thing I have noticed. I

am

> > scheduled for an uptake and scan June 21, the endo will then

> decide

> > what corse of action. I am allergic to sulfa and he said the

meds

> he

> > had in mind both contain sulfa?? I am hoping that that is far

as

> they

> > will have to go, we are hoping for remission. I unfortunately

> have

> > some eating issues and the thought of going into hypo and

gaining

> all

> > that weight scares me to death. I haven't lost any weight

from

> the

> > hyper yet? I have lots of questions, from readng the posts,

looks

> > like a nice group here.

> >

> > would love to hear from you,

> > Tig

> >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

Apparently the uptake scan is no longer necessary. Enough information can be

learned from an ultrasound...I don't know the details as I had the uptake scan.

K

Re: newly diagnosed

Hi Pam,

thanks for the post, I believe my endo is hoping for remission as

well as I. My thyroid problems were caught in a routine blood test.

my tsh was 0.03, so they retest and then it .00. That was about 8

months ago, I am positive for antiboties and my T3 is elavated. I

am so happy the PTU does not matter with a sulfa allergy.

I am scheduled to have the uptake and thyroid scan, can anyone

explain what I am to expect. 6 hour test!

It sounds like some people gain weight hyper and others gain weight

hypo?? Also does synthroid make you gain weight??

I have not lost any weight, but on the weekends feel exhausted.

I guess we will take this one day at a time.

Thanks for taking the time:)

Tig

> Greetings from another long lost soul !

> Hi Kate and Aunt Joan !

> I must apologies for not doing my yearly check in with this list,

to

> celebrate my remission.

> I'm still truckin' along. :-D

>

> Same here... allergic to sulfa, and no problems with my PTU.

> My endo said the chemical formula of sulfa in both ATDs is

different that

> the drugs we normally have problems with.

>

> This is easy o confirm.

> Google both ATD names... find manufactures package insert...it

will be the

> one with a PFD file type.

> Notice... NO warnings about sulfa allergies.

>

> Now... for example... Google the beta blocker Atenolol... see the

sulfa

> warning ?

>

> ***Next... do NOT be alarmed by the list of potential side effects

listed on

> all ATDs... those are hypo symptoms ! That means taking too much,

results in

> becoming hypothyroid until the dose is lowered... which must

always be done

> AFTER lab tests confirm .

>

>

> Be aware a total T3 test is not the correct test. That changes

according to

> your time of the month.

> Correct test is a FreeT3 and FreeT4... those measure thyroid

hormone only.

>

> I shall add my signature for you, :-)

>

>

> -Pam L - Almostcrazy

>

> 3 1/2 years Graves', TED, and PTU.

> Remission since Jan. 28th. 2002 !

> Key: SLOW reduction of PTU , eight hour dosing,labs every 4 weeks,

improved

> lifestyle, herbs, REAL food/ no processed pre-made food, and

looking at the

> big picture.

> Triggers are: MSG/any 'flavorings', glutamates ,aspartame,

pesticides,high

> iodine foods.

> _ _ _____________________________________________ _ _

> Pills alone only help the symptoms. We must help our bodies to

heal.

>

>

[Guest guest]

Hi . I do think it is important - if not to diagnose osteoporosis now,

then to establish a baseline for future scans. My specialist (Internist)

thought it was unnecessary and was very negative towards me when I pushed her

for it. When it came back positive she was not pleased either - after all, she

had been wrong! I changed doctor, needless to say. But I had the scan.

K

Re: Re: newly diagnosed

I had originally been thinking hypo must be so much easier than hyper. I have

been having a lot of awful symptoms with hyper but after reading posts from

people who have become hypo I think both are very difficult to live with. In

some ways it almost sounds worse to gain weight, be tired a lot and depressed

with hypo. My Mom is dealing with hypo right now and from talking to her and

reading posts on this board and another general thyroid board it can be really

hard for people to find the right dose of thyroid supplement whether it be

synthetic or natural. It is much more complicated than just taking a pill every

day for the rest of your life. I am concerned that some docs act like it is no

big deal to radiate and/or by surgery cause someone to be permanently hypo. I

would encourage you to try and wait and see if PTUs help before embarking on any

of the other two traditional types of treatments unless the doctor is telling

you you have some serious reason you can't wait. Hope this isn't too much

advice giving.

P.S. My doc wouldnt' do a bone density test for me because she said I am too

young to warrant it. I am 38. Do you all think I should try to get one done

somewhere. I think there is a free heel one done at one of the hospitals around

here. Does anyone know anything about those?

-------------- Original message --------------

So Kate,

Is the hard part of being hypo, the tiredness, weigh gain or what.

Everyone makes it sound like treating hypo is a breeze, but hyper is

dangerous?? Did you lose weight when you were hyper and that is why

the bone density issue? What can you do once you have lost that

density?

Thanks for you post,

Tig

> >

> > Welcome Tig!

> >

> >

> > -------------- Original message --------------

> > Hi there,

> > I was diagnosed with graves disease last week. I have had an

> > undetectable THS for about 9 months, positive for antibodies.

Now

> my

> > T3 is also elevated. I don't have many symtoms, I think....my

> typical

> > heart rate is in the 50's, last month at the doctors it was 80

and

> the

> > other day 100. That is the biggest thing I have noticed. I

am

> > scheduled for an uptake and scan June 21, the endo will then

> decide

> > what corse of action. I am allergic to sulfa and he said the

meds

> he

> > had in mind both contain sulfa?? I am hoping that that is far

as

> they

> > will have to go, we are hoping for remission. I unfortunately

> have

> > some eating issues and the thought of going into hypo and

gaining

> all

> > that weight scares me to death. I haven't lost any weight

from

> the

> > hyper yet? I have lots of questions, from readng the posts,

looks

> > like a nice group here.

> >

> > would love to hear from you,

> > Tig

> >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

Hi Pam

Sounds like you're doing well!

K

RE: newly diagnosed

Greetings from another long lost soul !

Hi Kate and Aunt Joan !

I must apologies for not doing my yearly check in with this list, to

celebrate my remission.

I'm still truckin' along. :-D

Same here... allergic to sulfa, and no problems with my PTU.

My endo said the chemical formula of sulfa in both ATDs is different that

the drugs we normally have problems with.

This is easy o confirm.

Google both ATD names... find manufactures package insert...it will be the

one with a PFD file type.

Notice... NO warnings about sulfa allergies.

Now... for example... Google the beta blocker Atenolol... see the sulfa

warning ?

***Next... do NOT be alarmed by the list of potential side effects listed on

all ATDs... those are hypo symptoms ! That means taking too much, results in

becoming hypothyroid until the dose is lowered... which must always be done

AFTER lab tests confirm .

Be aware a total T3 test is not the correct test. That changes according to

your time of the month.

Correct test is a FreeT3 and FreeT4... those measure thyroid hormone only.

I shall add my signature for you, :-)

-Pam L - Almostcrazy

3 1/2 years Graves', TED, and PTU.

Remission since Jan. 28th. 2002 !

Key: SLOW reduction of PTU , eight hour dosing,labs every 4 weeks, improved

lifestyle, herbs, REAL food/ no processed pre-made food, and looking at the

big picture.

Triggers are: MSG/any 'flavorings', glutamates ,aspartame, pesticides,high

iodine foods.

_ _ _____________________________________________ _ _

Pills alone only help the symptoms. We must help our bodies to heal.

[Guest guest]

I first was started on Tapazole. I had an allergic reaction to it - silver

dollar size hives all over my body - very itchy. From what I have learned

an allergy to Tapazole is pretty common. I then switched to PTU and never

had any allergic reactions to it. I was on it over 2 years before my RAI -

which I fought all along the way. My dosage was changed many many times but

I could not stay in the normal range and just kept getting worse so I gave

in to the RAI. About 4 months after I became hyper again and had to go back

on PTU for several months before I finally had normal labs and went off all

medication for a year before having to start the synthroid. It took a year

to get on the right dose of that. I finally had good labs this January.

Learn all you can and do your best to avoid the RAI if possible. Remember

you have to make your own decisions. You are the one that knows your own

body. Many will judge you for choosing RAI but there are many differnt

degrees of Graves'. Some respond better to the antithyroid drugs and feel

better sooner. we all have other circunstances in our lives that effect us,

also. Rest as much as you can and try to avoid stress - hard in these

times.

Try to keep a journal of how you feel and what does of meds you are on. I

wish I would have done that so I could be more helpful to others. I try to

remember things but wish I had them down on paper.

Best of health to you,

Tammy

RE: newly diagnosed

Tamy,

If you don't mind would you please share your experience with taking PTU

again. I just started my treatment on it in Feb.

--------- newly diagnosed

Hi there,

I was diagnosed with graves disease last week. I have had an

undetectable THS for about 9 months, positive for antibodies. Now my

T3 is also elevated. I don't have many symtoms, I think....my typical

heart rate is in the 50's, last month at the doctors it was 80 and the

other day 100. That is the biggest thing I have noticed. I am

scheduled for an uptake and scan June 21, the endo will then decide

what corse of action. I am allergic to sulfa and he said the meds he

had in mind both contain sulfa?? I am hoping that that is far as they

will have to go, we are hoping for remission. I unfortunately have

some eating issues and the thought of going into hypo and gaining all

that weight scares me to death. I haven't lost any weight from the

hyper yet? I have lots of questions, from readng the posts, looks

like a nice group here.

would love to hear from you,

Tig

[Guest guest]

Thanks Tamy for sharing your experience. Glad you are stabilized now.

--------- newly diagnosed

Hi there,

I was diagnosed with graves disease last week. I have had an

undetectable THS for about 9 months, positive for antibodies. Now my

T3 is also elevated. I don't have many symtoms, I think....my typical

heart rate is in the 50's, last month at the doctors it was 80 and the

other day 100. That is the biggest thing I have noticed. I am

scheduled for an uptake and scan June 21, the endo will then decide

what corse of action. I am allergic to sulfa and he said the meds he

had in mind both contain sulfa?? I am hoping that that is far as they

will have to go, we are hoping for remission. I unfortunately have

some eating issues and the thought of going into hypo and gaining all

that weight scares me to death. I haven't lost any weight from the

hyper yet? I have lots of questions, from readng the posts, looks

like a nice group here.

would love to hear from you,

Tig

[Guest guest]

Hi Pam,

Your signature interest me and I hope to get some

advise from you, especially on the aspect of 'slow

reduction of PTU'.

I was diagnose with hyper on 2003 and started with PTU

three times a day, each time 150mg for the first

month. Subsequently the doctor reduce it to 150mg once

a day of PTU.

So in other words, I have been taking PTU 150mg a day

for the past 18 months, and i am wondering should I

take the initiative to reduce the amount of PTU

consume, maybe to 100mg per day?

I am feeling good, although i would feel tense, tired

and irritated occasionally, especially, if it's a busy

day driving under the tropical sun.

I have not been consulting doctor or going to the labs

that often for the past 6 months, as it cost too much

and besides the result will always be the same. that

is a normal T3,T4 but very low TSH.

Tell me Pam, how do you decide on reducing the PTU?

Thanks, have a nice day.

Best rgds,

Pang

> -Pam L-

> -Pam L - Almostcrazy

>

> 3 1/2 years Graves', TED, and PTU.

> Remission since Jan. 28th. 2002 !

> Key: SLOW reduction of PTU , eight hour dosing,labs

> every 4 weeks, improved

> lifestyle, herbs, REAL food/ no processed pre-made

> food, and looking at the

> big picture.

> Triggers are: MSG/any 'flavorings', glutamates

> ,aspartame, pesticides,high

> iodine foods.

> _ _ _____________________________________________ _

> _

> Pills alone only help the symptoms. We must help our

> bodies to heal.

>

> [Non-text portions of this message have been

> removed]

>

>

________________________________________________________________________

Messenger - Communicate instantly... " Ping "

your friends today! Download Messenger Now

http://uk.messenger./download/index.html

[Guest guest]

Pam,

I don't have the scan until June 21. The endo said that he wanted

me to have the scan to see what the next course of action is. With

my bloodwork, he was able to diagnose Graves disease. My tsh is

000, my T3 is elavated and I test positive for antibodies which are

telling my body something is wrong and is fighting my body.

I hate the fact that it is a radioactivity in my body. If this is a

useless test why would he order it?? What do you mean...to tell

what you ate for lunch last week>

I am confused. have other people had the uptake/scan and are only

on meds at this point??

Please let me know, because I don't have a problem cancelling this?

Looking forward to hear other's experiences. I thought this was

part of the routine, this endo is well known??

Thanks for the heads up Pam,

Tig

> Tig,

>

> What antibodies ?

>

> Why a scan ?

>

> Are you aware the scan is useless except to judge the dose needed

of RAI ?

> It pretty much only tell what you had for lunch the last week or

so... did

> you know that ?

> The scan can cause real problems too.

>

> Uptake scans contain radiation... which causes antibody

increase... and a

> huge amount of iodine! Which will cause you to become more hyper

for about a

> month, it increases antibodies, and it can worsen or cause thyroid

eye

> disease to make itself known... where without the scan, the

patient may

> never had been stimulated enough to get TED.

>

> The type of radiation used has a longer half life than the one

they ablate

> the thyroid with... just to add insult to injury.

>

> Now if you have cancer it's a whole different story... but it

sounds like

> your just talking about slight hyper...

>

> Ugh... am I in time ?

>

> -Pam L-

>

>

[Guest guest]

Hi Pam,

I hope you could advice me on your way of PTU

reduction. Was it base on your own gut feeling or

doctor's advice?

--- Pang <mailtopang@...> wrote:

> Hi Pam,

>

> Your signature interest me and I hope to get some

> advise from you, especially on the aspect of 'slow

> reduction of PTU'.

>

> I was diagnose with hyper on 2003 and started with

> PTU three times a day, each time 150mg for the first

> month. Subsequently the doctor reduce it to 150mg

> once a day of PTU.

>

> So in other words, I have been taking PTU 150mg a

> day for the past 18 months, and i am wondering

should I take the initiative to reduce the amount of

PTU

> consume, maybe to 100mg per day?

>

> I am feeling good, although i would feel tense,

> tired and irritated occasionally, especially, if

it's a busy day driving under the tropical sun.

>

> I have not been consulting doctor or going to the

> labs that often for the past 6 months, as it cost

too

> much and besides the result will always be the same.

that is a normal T3,T4 but very low TSH.

>

> Tell me Pam, how do you decide on reducing the PTU?

>

> Thanks, have a nice day.

>

> Best rgds,

> Pang

>

>

> > -Pam L-

> > -Pam L - Almostcrazy

> >

> > 3 1/2 years Graves', TED, and PTU.

> > Remission since Jan. 28th. 2002 !

> > Key: SLOW reduction of PTU , eight hour

> dosing,labs

> > every 4 weeks, improved

> > lifestyle, herbs, REAL food/ no processed pre-made

> > food, and looking at the

> > big picture.

> > Triggers are: MSG/any 'flavorings', glutamates

> > ,aspartame, pesticides,high

> > iodine foods.

> > _ _ _____________________________________________

> _

> > _

> > Pills alone only help the symptoms. We must help

> our

> > bodies to heal.

> >

> > [Non-text portions of this message have been

> > removed]

> >

> >

>

>

>

________________________________________________________________________

> Messenger - Communicate instantly... " Ping "

> your friends today! Download Messenger Now

> http://uk.messenger./download/index.html

>

________________________________________________________________________

Messenger - Communicate instantly... " Ping "

your friends today! Download Messenger Now

http://uk.messenger./download/index.html

[Guest guest]

Hi.my name is Joy dr,s tell me nothing is wrong even though I have now 6 nodules

and 1 scist, on my thyroid I have 98% of the systems I wish someone would

listen to me I,m always sick plus gained 15lb,s in 3 months Help

mn_mom2003 <G.Rahn@...> wrote:I was just recently diagnosed, although

have had symptoms for 3-5

yrs. But MDs & HMO didn't feel TSH numbers were significant enough

to look at anything, & they attributed weight gain 70lbs to decreased

exercise. I had many other symptom (online quiz, I had 34 out of 40

symptoms), but I didn't know. So they were treated individually, or

just ignored. Having done some research prior to last MD appt, where

she put me on 25micrograms of Synthroid (is this an adequate/ normal

amt?). From my research I was reading that if you are over 40 you

should also be prescribed T3 in addition to T4. However she would

not do that, as it is insurance guidelines to ONLY prescribe the

Synthroid. She wouldn't even discuss the Armour Therapy as she

considered the hormone found in that to be unreliable as it is not

monitored like other medications are??? She is saying it will take 6-

8 weeks to feel the effects and then we can monitor the T4 AND T3

levels just by doing a TSH - is that right??

I took the synthroid right away on the first night, and then again

the next AM, and generally take it in the AM. Already on day #1, I

was not fatigued, to the point that my co-workers even noticed, and

the ringing in my ears was a little quieter, and I wan't freezing

like I usually am - is it normal to some changes so rapidly??

Any other insights, suggestions for those of you that have both

struggled with the condition & the medical system over the years,

also what is an effective weight loss program? I was half way to

qualifying for bariatric surgery before this was discovered the

hypothyroidism.

Thanks for all you feedback!

[Guest guest]

Will your HMO let you go to an endrocologist for a second oppion?

Joyce M

Re: Newly diagnosed

Hi.my name is Joy dr,s tell me nothing is wrong even though I have now 6

nodules and 1 scist, on my thyroid I have 98% of the systems I wish someone

would listen to me I,m always sick plus gained 15lb,s in 3 months Help

mn_mom2003 <G.Rahn@...> wrote:I was just recently diagnosed, although

have had symptoms for 3-5

yrs. But MDs & HMO didn't feel TSH numbers were significant enough

to look at anything, & they attributed weight gain 70lbs to decreased

exercise. I had many other symptom (online quiz, I had 34 out of 40

symptoms), but I didn't know. So they were treated individually, or

just ignored. Having done some research prior to last MD appt, where

she put me on 25micrograms of Synthroid (is this an adequate/ normal

amt?). From my research I was reading that if you are over 40 you

should also be prescribed T3 in addition to T4. However she would

not do that, as it is insurance guidelines to ONLY prescribe the

Synthroid. She wouldn't even discuss the Armour Therapy as she

considered the hormone found in that to be unreliable as it is not

monitored like other medications are??? She is saying it will take 6-

8 weeks to feel the effects and then we can monitor the T4 AND T3

levels just by doing a TSH - is that right??

I took the synthroid right away on the first night, and then again

the next AM, and generally take it in the AM. Already on day #1, I

was not fatigued, to the point that my co-workers even noticed, and

the ringing in my ears was a little quieter, and I wan't freezing

like I usually am - is it normal to some changes so rapidly??

Any other insights, suggestions for those of you that have both

struggled with the condition & the medical system over the years,

also what is an effective weight loss program? I was half way to

qualifying for bariatric surgery before this was discovered the

hypothyroidism.

Thanks for all you feedback!

[Guest guest]

--Hi Kim.

Welcome to the group, im sorry you have to be here, but if you have

to be somewhere I think you have found the best place to be.

The people on this list are awesome, there are a lot of very

experienced parents who have been dealing, sadly, with this for

years.

I hope your daughter starts to feel better. I see shes 13, we do

have a group that was recently started just for the kids to hang

out. She might find it benefical to talk to some of the others her

age about their experiences.

let me know if you are interested and i can let you know how she can

join.

hugs Helen and (8,systemic)

- In , " kbranson1962 " <kbranson1962@...>

wrote:

>

> Hello. I am new to this forum. My 13 year old daughter was just

> diagnosed with JRA. She tested positive for the antinuclear

Antibody

> and currently is on crutches for her right knee. Her pediatric

> rheumatologist thinks she has pauciartular arthritis. Questions

> galore. What is typical? What can I expect? She has been on

> crutches for two weeks and now with her new medicine she is

getting a

> little better. What are some triggers for the pain to start up

> again? How long does the pain usually lasts? Is there anything

out

> there that helps to prevent flare ups? Are there any good and

usefull

> books? Any and all information is greatly appreciated.

> Thank you all so so much

> Kim

>

[Guest guest]

Hi, Kim. My son was 13 also when he was diagnosed. It is a tough age for

this to happen, and perhaps your daughter would benefit from checking

out the kids list.

When my son was diagnosed, he had been wearing a brace from the

orthopedic dr, who had misdiagnosed him. My son had begun to have

atrophy from not moving his ankle joint enough. The rheumy had him start

physical therapy right away and it really helped. He did that for about

6 months and he got his range of motion back. I would think your

daughter could use some pt to get her off the crutches. What can happen

with the crutches is she is not moving the joint enough. I know it

sounds weird but doing some exercise to the best of her ability is

really helpful. Just a thought, you might want to talk to the dr about

it.

As to the meds, it took about a year and half after diagnosis (it took 7

months before my son was diagnosed) that we hit on the right combo of

meds to get my son under control. He started with Celebrex, which he

maxed out on at 800 mgs a day, then sulfasalazine was added. This is a

DMARD (disease modifying anti rheumatic drug) that is used first often

when someone has spondylitis. My son was first diagnosed with pauci jra

but as he developed more symptoms, the dr felt it was more like

anklosing spondylitis. This is another disease in the arthritis family.

We just call it spondy. That did not work too well and again he maxed

out, taking 3000 mgs a day. We then moved on to another DMARD,

methotrexate, which for my son, has been his miracle drug. It has worked

well, and he is now tapering it down. At 18, there are times when he

does not take his meds like he should, so he does have some problems now

and again, but if he takes his med like he should, he has very few

instances of arthritis. I would say he is in medicated remission. For

your daughter, things might go a different way. That is the thing with

JRA. Each case is different and responds differently to meds.

For info you can check out www.arthritis.org for info. There is a book

called " It's not just growing pains " which a lot of folks here on the

list like. Georgina (this list moderator) posts a lot of info that has

taught me a lot about JRA. Reading the posts from everyone here has also

helped a lot.

Post any questions you might have - I am sure someone here can offer

some help. This list has been wonderful for me, especially when my son

was first diagnosed and over the years as we had many frustrations. They

were also wonderful in the good times too, for example when my son ran

on a treadmill for the first time in 2 years. They understood my tears

of joy. Anyway, welcome to the list. Hope this helps a bit, Michele

( 18, spondy)

PS One thing I forgot, which is important, make sure your daughter gets

to an eye dr and has a slit lamp eye test. That is the only way to check

for inflammation of the eye (a disease called uvietis) which kids with

jra can get. It occurs most often in girls with pauci, but any child can

get it. My son had to go every 3 months at first and is now down to

every 6 months. Our eye dr said that after 7 years of no inflammation he

only needs to go once a year.

[Guest guest]

Kim,

Sadly, you found us and I hope we can offer the support and answers

that can help you guys. Educating yourself is really key to

understanding, accepting and then being proactvie withe this

disease. The Arthritis Org. web site had some great basic info and

the links on this site have tons of info. You might call the AF and

see if there's a local support group or network of families with JA

kids.

As far as treatments, if there's only one or two sever joints, your

ped. rheumy may inject the joints with a steroid-like drug which can

bring relief for 6 months or longer in some kids. She may be taking

NSAID's for pain and swelling or possibly even a DMARD to stop the

progression. There are lots of drugs out there to try before

feeling defeated. It is a process to find the perfect combo. of

meds, so patience is really needed. The AF also has a lot info on

the drugs with pros and cons.

If you have enything specific to ask, just say so and we'll help. I

would also encourage your daughter to educate herself as much as

possible and recruit a good friend or two to help her battle this

disease.

Stacia and Hunter 9 systemic, uveitis

[Guest guest]

Hi Karin and welcome to the group. Even though coming to the group is

bittersweet - it is a wonderful group full of compassionate individuals who do

understand but we hate knowing there is another child just diagnosed. I am a JRA

vet of 36 years and can tell you times and treatment have changed so much and

there is a bright future for your lil one. There are many parents here who

will be glad to answer questions and guide you through some of the processes.

Welcome!

Donna

[Guest guest]

Hi Karin-

I am so sorry that your daughter is going through this... but I am glad you

have found us! My daughter was diagnosed at 3 years - she is almost 8 now.

What type of JRA does your daughter have? Also, where do you live? You might

be surprised to find somebody on the board who is nearby. Even without a

physical proximity, you can always come here with questions and to get support.

It has been a real lifeline for me.

A lot of kids have had some immediate success with the joint injections. The

tough part for you will be trying to keep your daughter from running around too

much afterward. They generally want you to keep the joint immobile for a bit.

With my daughter, they actually casted her leg to keep the knee still for two

days.

If she is only on naprosyn now, I would not be surprised if your doctor

started to discuss the possibility of methotrexate with you. That can be very

scary, but it is an extremely common next step. If that happens, there are

plenty of parents here with experience and advice.

As for therapy, if you have access to pool therapy through your hospital or a

PT clinic, it often does wonders, especially for legs. Warm baths in the

morning also help to get thinsg going and decrease discomfort... and many people

also use heating pads or electric blankets.

I have rambled---- but please let us know if you have any specific questions!

Best hopes to you for good results from the injections......

Take care-

Colleen (mom to Caitlin, 7, systemic)

swishkiss <swishkiss@...> wrote:

My 2 year old daughter has just been diagnosed with JRA. It has been

a rough 3 months as it is affecting her knees and she is not walking

much and is in significant pain. We are going for joint injections

this week. Any ideas for therapy or medications? Also, we do not

know any other families in this situation so any advice would be very

helpful.

Thanks,

Karin