Another Newbie to Graves

[Guest guest]

Just wanted to drop in and say hi to everyone so as not to be

rude. ) Busy reading and learning and joting down questions to ask

and answers to find. About all I know for sure is that in June of

this year I was diagnosed with Graves and the TSH number I was given

(by a very upset doctor who called me at home to give me the number

and to tell me she had called in a script for beta-blockers! haha)

of .0004 with the standard of .5 - 5.5. She was the one who told me

that the numbers had recently changed to .35 - 3.5, but the lower

numbers didn't seem to reassure her when comparing them to what mine

currently was. ) Did the uptake test 2 weeks later (I now know I

need to have copies of all these test results myself), that confirmed

the diagnosis and went on PTU. After a couple of months and no change

in test results and terrible muscle cramping, talk began regarding

RAI. Now, the more I read and questioned, the more convinced that

this was NOT an option I wanted to pursue and told my doctor so. She

gave me the impression that she thought that RAI was the best thing

since sliced bread and would solve all my problems, BUT she has been

very forthcoming and has no obvious problem with working we me with

whatever choice I make. She changed the meds to Tapazole 10mg 3 times

a day. Been on this for almost a month now with no problems and have

an appointment in two weeks for more tests.

I haven't had the extreme physical problems so many of you have and

don't have enough knowledge at this point to know what questions to

ask, but just wanted to tell you how much I'm learning and I know

that I will benefit from the knowledge I'm getting here.

Back to my reading.......

Carolyn

[Guest guest]

Hi Carolyn,

that's great that you've found something that does agree with you.

I'm still on Methimazole 5mgs and Atenolol 50 mgs, and I hope to one

day drop to 2.5 mgs of MMI, but I just have too much going on in my

life right now. I've been having conversations with a man who helped

somebody catch a bird like the one I lost and it's had me very upset.

So far, the stress hasn't killed me, but I do feel better some days

than others.

I've not been paying much attention to the message boards as I'm just

so consumed right now in finding my Gabby who's out there somewhere,

waiting for me to find her. That thought comsumes me the entire day

while I'm at work, and it's sure showing with my work. :-( I'm just

too preoccupied. I figure if this doesn't cause me anymore problems,

then I'm possibly home free and won't have any relapses. lol. I

could use a drink though. Only problem is I don't drink? rofl.

It's nice to hear that even though one medicine didn't work well for

you, another did. So many people are told that if one fails, it's no

use trying the other. Another success story! :-)

Sandy~Houston

On Thu, 25 Sep 2003 19:29:26 -0000

" ladychb " wrote:

[Guest guest]

It's nice to hear that even though one medicine didn't work well for

you, another did. So many people are told that if one fails, it's no

use trying the other. Another success story! :-)

Sandy~Houston

~~~~~~~~~~~~~~~

Well, let's just say that so far, so good and keep our fingers

crossed that it stays that way. Sending good thoughts your way for a

speedy recovery of your wayward bird friend and calming thoughts so

you feel no ill effects from the stress.

Carolyn

[Guest guest]

Welcome Carolyn,

Perhaps a last initial ? You will meet our original Carolyn I am sure.

:-)

Sounds like you are very wise to begin learning what you will need to know,

and since you CAN comb your hair and get up the stairs, I predict your

ability to figure this stuff will be much easier for you. ( crystal ball ya

know )

Copies of those labs are going to tell you the truth.

It sounds like the PTU WAS working just fine, but this doctor does not

understand the true nature of autoimmune disease. She is looking at TSH and

not the correct FREE T4 and FREE T 3 results.

You MUST get in control because she will over dose you this way. You then

end up with high liver numbers and also become so hypo you will beg for any

possible relief, and not be able to think as you normally do.

There was no need for the scan, and this leads me to suspect proper antibody

tests are not done yet. I do pray you have base line readings for white

blood count and the liver.

Please continue through the archives. You will see this pattern in other

doctors that do not have adequate knowledge. Do stick with us. This next few

months will be the only time you are in danger of being made worse... as I

see you are very capable of thinking for yourself.... so far. Hypo sucks our

brains out though. And over medication causes hypo big time.

30mg of Tap is fairly high after the month of PTU. How much PTU were you on

?

Get those lab results after the PTU and before the Tap.

Please.

-Pam L-

3 1/2 years Graves', TED, and PTU. Remission due to SLOW reduction of PTU

(despite an incompetent endo ! ), improved lifestyle, excellent nutrition,

herbs, and looking at the big picture.

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

[Guest guest]

Thanks for the welcome. Normally, you will see me sign as Ladychb,

but I figured the first time posting should be my real name.

I am so grateful that I found this group at the beginning of my

journey with this. I have already found comfort in knowing I'm not

the only one who has questioned the " advice " given as maybe not the

best answer to be had, just the easiest for them. And I hope your

crystal ball is right and things continue as well as they are now.

I started out with 50 mg three times a day of the PTU and after a

month was moved up to 100mg three times a day. Very quickly I

felt " better " , but was soon not feeling well at all. Nothing

specific, but just general blah. That's when we did the next test

and the TSH levels hadn't changed at all after two months. She then

started talking about the RAI and I stopped in my tracks like a

stubborn mule and said NO. I think she was taken by surprise, but

quickly came over to my way of thinking and decided to try the

Methimazole (I'm home now and have the bottles in front of me) at

10mg three times a day. Within 2 days I felt so much better that I

was amazed at the difference. I do think the PTU was working, but

this is making me feel so much better that I really don't want to go

back if I can help it. Just a whole different mental attitude with

this one. I took Propanolol 10mg 3 times a day, but have been able

to quit those since I've been on the Methimazole and only take one

if things get too stressful. That's the kind of difference I'm

talking about. Now, I know that the same thing may have happened on

the PTU, but it didn't and now I'm convinced in my mind anyway that

the new stuff is better! ) Oh well.....I do know that we did a

complete blood work up with liver and white blood counts before we

started on this. She insisted that it be done the first day I saw

her when she thought I might have to start taking these drugs. As I

have read the archives, I've been grateful that she did this on her

own. But, I do know now that I need to see what tests were done and

what the results were. I'm going to stop by the office tomorrow to

see about picking them up. Have to make an appointment for a follow

up and I'm going to see if I can get the other tests done first and

then talk to her about them when I go in.

Thanks for the encouragement and I WILL keep reading. Trust me on

that one and I'll be here for quite awhile I'm sure. My daughter is

extremely hypoT and I would not wish that on anybody and I'll

certainly fight to see that it doesn't happen to me.

Okay, enough talk, back to reading.....

Ladychb

~~~~~~~~~~~~~~~~~~

Welcome Carolyn,

Perhaps a last initial ? You will meet our original Carolyn I am

sure. :-)

Sounds like you are very wise to begin learning what you will need

to know, and since you CAN comb your hair and get up the stairs, I

predict your ability to figure this stuff will be much easier for

you. ( crystal ball ya know )

Copies of those labs are going to tell you the truth. It sounds like

the PTU WAS working just fine, but this doctor does not understand

the true nature of autoimmune disease. She is looking at TSH and not

the correct FREE T4 and FREE T 3 results.

You MUST get in control because she will over dose you this way. You

then end up with high liver numbers and also become so hypo you will

beg for any possible relief, and not be able to think as you

normally do.

There was no need for the scan, and this leads me to suspect proper

antibody tests are not done yet. I do pray you have base line

readings for white blood count and the liver.

Please continue through the archives. You will see this pattern in

other doctors that do not have adequate knowledge. Do stick with us.

This next few months will be the only time you are in danger of

being made worse... as I see you are very capable of thinking for

yourself.... so far. Hypo sucks our brains out though. And over

medication causes hypo big time.

30mg of Tap is fairly high after the month of PTU. How much PTU were

you on? Get those lab results after the PTU and before the Tap.

Please.

[Guest guest]

> Thanks for the welcome. Normally, you will see me sign as Ladychb,

> but I figured the first time posting should be my real name.

Most, but not all of us, use real names here. We're a friendly group! You're

welcome under either moniker.

>

> I am so grateful that I found this group at the beginning of my

> journey with this. I have already found comfort in knowing I'm not

> the only one who has questioned the " advice " given as maybe not the

> best answer to be had, just the easiest for them. And I hope your

> crystal ball is right and things continue as well as they are now.

>

> I started out with 50 mg three times a day of the PTU and after a

> month was moved up to 100mg three times a day. Very quickly I

> felt " better " , but was soon not feeling well at all. Nothing

> specific, but just general blah. That's when we did the next test

> and the TSH levels hadn't changed at all after two months.

Here's a great example of why we want to see all the test results. TSH lags

behind at least 6 weeks, and furthermore, levels of it are affected by the

ATD's so we NEVER look at TSH for guidance around here. FT4 and FT3 are

totally necessary tests.

Your description of " general blah " feelings could as easily be because you

responded WELL to the PTU, and have gone hypOthyroid! Without those test

results you'll never know.

She then

> started talking about the RAI and I stopped in my tracks like a

> stubborn mule and said NO.

GOOD FOR YOU!

I think she was taken by surprise, but

> quickly came over to my way of thinking and decided to try the

> Methimazole (I'm home now and have the bottles in front of me) at

> 10mg three times a day. Within 2 days I felt so much better that I

> was amazed at the difference.

30 Mg. is a " normal " starting dose for Methimazole.

I do think the PTU was working, but

> this is making me feel so much better that I really don't want to go

> back if I can help it. Just a whole different mental attitude with

> this one. I took Propanolol 10mg 3 times a day, but have been able

> to quit those since I've been on the Methimazole and only take one

> if things get too stressful. That's the kind of difference I'm

> talking about. Now, I know that the same thing may have happened on

> the PTU, but it didn't and now I'm convinced in my mind anyway that

> the new stuff is better! ) Oh well.....I do know that we did a

> complete blood work up with liver and white blood counts before we

> started on this. She insisted that it be done the first day I saw

> her when she thought I might have to start taking these drugs.

this is good--the baseline levels may come in handy. You should also get a

copy of these test results.

As I

> have read the archives, I've been grateful that she did this on her

> own. But, I do know now that I need to see what tests were done and

> what the results were. I'm going to stop by the office tomorrow to

> see about picking them up. Have to make an appointment for a follow

> up and I'm going to see if I can get the other tests done first and

> then talk to her about them when I go in.

>

> Thanks for the encouragement and I WILL keep reading. Trust me on

> that one and I'll be here for quite awhile I'm sure. My daughter is

> extremely hypoT and I would not wish that on anybody and I'll

> certainly fight to see that it doesn't happen to me.

>

> Okay, enough talk, back to reading.....

> Ladychb

> ~~~~~~~~~~~~~~~~~~

> Welcome Carolyn,

>

> Perhaps a last initial ? You will meet our original Carolyn I am

> sure. :-)

>

> Sounds like you are very wise to begin learning what you will need

> to know, and since you CAN comb your hair and get up the stairs, I

> predict your ability to figure this stuff will be much easier for

> you. ( crystal ball ya know )

>

> Copies of those labs are going to tell you the truth. It sounds like

> the PTU WAS working just fine, but this doctor does not understand

> the true nature of autoimmune disease. She is looking at TSH and not

> the correct FREE T4 and FREE T 3 results.

>

> You MUST get in control because she will over dose you this way. You

> then end up with high liver numbers and also become so hypo you will

> beg for any possible relief, and not be able to think as you

> normally do.

>

> There was no need for the scan, and this leads me to suspect proper

> antibody tests are not done yet. I do pray you have base line

> readings for white blood count and the liver.

>

> Please continue through the archives. You will see this pattern in

> other doctors that do not have adequate knowledge. Do stick with us.

> This next few months will be the only time you are in danger of

> being made worse... as I see you are very capable of thinking for

> yourself.... so far. Hypo sucks our brains out though. And over

> medication causes hypo big time.

>

> 30mg of Tap is fairly high after the month of PTU. How much PTU were

> you on? Get those lab results after the PTU and before the Tap.

> Please.

>

>

>

>

> -------------------------------------

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> Please consult your doctor before changing or trying new treatments.

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