Newly diagnosed

May 23, 2005

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

May 23, 2005

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.

May 23, 2005

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

>

May 23, 2005

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

> >

May 23, 2005

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.

>

May 23, 2005

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-

May 24, 2005

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

May 24, 2005

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

> >

May 24, 2005

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.

May 24, 2005

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

> >

May 24, 2005

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.

>

May 24, 2005

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