Re: Labs and PTU Dosage Questions

[Guest guest]

,

Seems like you are responding well to the PTU! That's good. Also sounds

like a dosage decrease is in order. How are you feeling? Even with the

decrease, you probably still need to watch for symptoms of hypO. What is

your FT3? I didn't see it posted, so I'm guessing they didn't run that one

on you either. I would insist on it. I would also want the TSI test, as

well as for TPO antibodies. Perhaps your doc is avoiding these tests

because they are expensive. You can push for them, and if he still refuses,

maybe you need to go elsewhere (my GP will run tests if my endo won't). I

certainly would insist on the antibody tests before thinking of weaning off

the meds completely.

At 11:08 AM 7/25/2003, you wrote:

>Hello,

>

>I have some questions regarding my labs and dosage of PTU. Here is

>the rundown,

[Guest guest]

To the credit of my endo, he has not suggested

> RAI, which I won't have. But, I thought his reaction to me asking

> about the TSI was wierd. Anyways, I am hoping that you will give me

> your insights into all this.

Hi . The " we know you have Graves anyway " line must be taught in

thyroid 101 in medical school. You have some time to educate him about

the TSI. At this point you may want to wait till you're ready to go off

the PTU and use the time to confirm with insurance that if he orders the

test they'll cover it, etc., so there's no reason why he shouldn't humor

you.

Are you still on beta-blockers? With a FT4 that low you're probably

feeling a bit hypo. You don't want to go off the PTU prematurely but if

you were ever on beta-blockers you should be weaning off them.

Speaking of weaning, the fact that this was post-partum may make you

reach remission sooner. You want to be sure it's a true remission before

going off the PTU so fight for the TSI. Also, at this point you may want

to decrease your PTU in 25 mg. increments which you can easily do with a

pill cutter. So many of us find ourselves going hypo, in some cases due

to being kept at inappropriately high doses of ATD that we get fed up and

stop too soon or at too high a dose of the ATD and get a rebound effect.

Take care, Fay

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[Guest guest]

Hi ,

Now that I have had my rant on TSI prices, I can tell you most endos do not

do tests unless the results will possibly alter the course of treatment.

Since you have a fairly clear diagnosis, and do still need to be on the PTU,

the test is not particularly relevant at this time.

Later... when you are hypo on 25mg of PTU... then it becomes important.

It looks by your labs you are very overdue for this dose reduction.

Look back at June. Your FT4 dropped from 2.23 on the 5th ... barely above

normal and already a fast drop from May 19th when it was 5.30.

That is a fast drop on only 150mg a day.

Which readily explains how you ended up VERY hypo at a FT4 of .5 in this

short time. Bet you are not feeling like dancing a jig after a full day

right now. :-)

The reduction should really improve how you feel as soon as the first day.

And you will feel better each passing day...with improvements continuing for

about 3 1/2 weeks in my case. The changes the last week were always more

subtle. Stuff I did not even realize were wrong.

PTU is made to be taken every eight hours. By not doing this correctly, you

become MORE hypo shortly after you take too big a dose. Then you have NO

anti thyroid medication working that last couple hours before the next dose.

Thus you are hyper. Makes for a tough day.

Consistent levels not only feel better, but allow the body to heal. Anytime

we are too hyper or too hypo our antibodies increase. So you are in affect

killing antibodies a few hours a day and increasing them several hours a day

No... this is not the path to remission. It only puts you in a holding

pattern of feeling sick. And no progress.

The labs show thyroid hormone being blocked only. The antibodies that ARE

Graves' are in there doing their thing while time slips past you. There is a

good healthy life over here in Remissionland , and the time spent working

towards it is never wasted, but why putz around? If they are going to keep

you hypo too much of the time, you may give up and pray that you happen to

beat the odds and buy the lie that RAI solves everything and one little pill

a day is wonderful.

Splitting 100 mg is tricky. I took out two pills, split them into close to

three equal piles and that was my dose for the day. One first thing in the

morning, one late afternoon and one at bed. Close to 8 hours on the last

bedtime one is fine. Do not loose sleep over the last pill as sleep is a

great healer.

Please do a Google search. Type in the full name of PTU and find the

manufactures instructions. Which many doctors never seem to bother reading.

( sigh )

-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]

Pam

Can I butt in here...why is the TSI relevant when you're on a low dose of

ATD? I am flying solo pretty much here...can't find a doctor willing to do

long term ATDs. Anyway, I'm on 5mg, sometimes 2.5 mg. But it seems that

when I drop to 2.5mg I feel hyper....This has been going on for months. I

don't feel like I'm in remisson at all, but am confused about what to do. If

I stay on 5mg, I go hypo. Not bad hypo like before, because I'll drop the

dose when I feel it getting bad. I'm having labs done this week (by a GP

who knows nothing about Graves) but am desperate and can't find an endo. I

haven't had labs done in a while. Anyway, I just wondered about

that....what do you do when you get on a low dose and can't seem to find the

RIGHT dose???

Kristi

Re: Labs and PTU Dosage Questions

> Hi ,

>

> Now that I have had my rant on TSI prices, I can tell you most endos do

not

> do tests unless the results will possibly alter the course of treatment.

> Since you have a fairly clear diagnosis, and do still need to be on the

PTU,

> the test is not particularly relevant at this time.

>

> Later... when you are hypo on 25mg of PTU... then it becomes important.

>

> It looks by your labs you are very overdue for this dose reduction.

> Look back at June. Your FT4 dropped from 2.23 on the 5th ... barely above

> normal and already a fast drop from May 19th when it was 5.30.

>

> That is a fast drop on only 150mg a day.

>

> Which readily explains how you ended up VERY hypo at a FT4 of .5 in this

> short time. Bet you are not feeling like dancing a jig after a full day

> right now. :-)

>

> The reduction should really improve how you feel as soon as the first day.

> And you will feel better each passing day...with improvements continuing

for

> about 3 1/2 weeks in my case. The changes the last week were always more

> subtle. Stuff I did not even realize were wrong.

>

> PTU is made to be taken every eight hours. By not doing this correctly,

you

> become MORE hypo shortly after you take too big a dose. Then you have NO

> anti thyroid medication working that last couple hours before the next

dose.

> Thus you are hyper. Makes for a tough day.

>

> Consistent levels not only feel better, but allow the body to heal.

Anytime

> we are too hyper or too hypo our antibodies increase. So you are in affect

> killing antibodies a few hours a day and increasing them several hours a

day

> No... this is not the path to remission. It only puts you in a holding

> pattern of feeling sick. And no progress.

>

> The labs show thyroid hormone being blocked only. The antibodies that ARE

> Graves' are in there doing their thing while time slips past you. There is

a

> good healthy life over here in Remissionland , and the time spent working

> towards it is never wasted, but why putz around? If they are going to keep

> you hypo too much of the time, you may give up and pray that you happen to

> beat the odds and buy the lie that RAI solves everything and one little

pill

> a day is wonderful.

>

> Splitting 100 mg is tricky. I took out two pills, split them into close to

> three equal piles and that was my dose for the day. One first thing in the

> morning, one late afternoon and one at bed. Close to 8 hours on the last

> bedtime one is fine. Do not loose sleep over the last pill as sleep is a

> great healer.

>

> Please do a Google search. Type in the full name of PTU and find the

> manufactures instructions. Which many doctors never seem to bother

reading.

> ( sigh )

>

> -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 responses. To answer Fay's question, I was never on

beta-blockers. So, I guess I don't have to worry about getting off of

those.

When the nurse called me with latest resuls, I questioned her

(pointless, she doesn't understand) about the FT4. I was in fact, not

feeling as well as I had been. Feeling a little more tired and

sluggish for the last week or so. Thought it was because we had just

come home from vacation and all that. But, when she said that the FT4

was .5, I thought that is too low. So, I asked her, am I going hypo?

And she replied, no, you have a HYPER thryroid, like I didn't

understand my disease. I tried to ask her again, but the same

response.

This is all so new to me. Some of the discussions here are so over my

head that I feel totally lost! I'm starting to wonder if I need to

find a new endo, but from what I've read, its hard to find a good one.

Anybody out there in Minneapolis area that likes their endo?????

hehe, never hurts to ask!

I'm going to try to split the 100 mg dose. When I was taking the 150

mg a day, I was taking it in 3 doses. (this was my decision, the doc

never suggested it, when I brought it up he said, sure it won't hurt -

go figure). Today is the second day of only 2 pills versus 3.

Thanks for the help. I go in again in 4 weeks for more labs. So,

hopefully, it'll stabilize a bit.

> Which readily explains how you ended up VERY hypo at a FT4 of .5 in

this

> short time. Bet you are not feeling like dancing a jig after a full

day

> right now. :-)

>

>

> Splitting 100 mg is tricky. I took out two pills, split them into

close to

> three equal piles and that was my dose for the day. One first thing

in the

> morning, one late afternoon and one at bed. Close to 8 hours on the

last

> bedtime one is fine. Do not loose sleep over the last pill as sleep

is a

> great healer.

[Guest guest]

, I see Dr. Jeff Rugermeir in Edina. Now his call nurses need to be a

little educated sometime, but he treats me well, with respect, and listens

to me. His number is . I use to see Dr. Mulmed, and he did

follow up on phone calls himself sometimes, but he really treated me poorly,

and his lab girl made several big mistakes. He insisted that I was just

lazy and ate too much when I became hypo after RAI. Hope that helps.

Jen M

Re: Labs and PTU Dosage Questions

> Thanks for the responses. To answer Fay's question, I was never on

> beta-blockers. So, I guess I don't have to worry about getting off of

> those.

> When the nurse called me with latest resuls, I questioned her

> (pointless, she doesn't understand) about the FT4. I was in fact, not

> feeling as well as I had been. Feeling a little more tired and

> sluggish for the last week or so. Thought it was because we had just

> come home from vacation and all that. But, when she said that the FT4

> was .5, I thought that is too low. So, I asked her, am I going hypo?

> And she replied, no, you have a HYPER thryroid, like I didn't

> understand my disease. I tried to ask her again, but the same

> response.

> This is all so new to me. Some of the discussions here are so over my

> head that I feel totally lost! I'm starting to wonder if I need to

> find a new endo, but from what I've read, its hard to find a good one.

> Anybody out there in Minneapolis area that likes their endo?????

> hehe, never hurts to ask!

> I'm going to try to split the 100 mg dose. When I was taking the 150

> mg a day, I was taking it in 3 doses. (this was my decision, the doc

> never suggested it, when I brought it up he said, sure it won't hurt -

> go figure). Today is the second day of only 2 pills versus 3.

> Thanks for the help. I go in again in 4 weeks for more labs. So,

> hopefully, it'll stabilize a bit.

>

>

> > Which readily explains how you ended up VERY hypo at a FT4 of .5 in

> this

> > short time. Bet you are not feeling like dancing a jig after a full

> day

> > right now. :-)

> >

> >

> > Splitting 100 mg is tricky. I took out two pills, split them into

> close to

> > three equal piles and that was my dose for the day. One first thing

> in the

> > morning, one late afternoon and one at bed. Close to 8 hours on the

> last

> > bedtime one is fine. Do not loose sleep over the last pill as sleep

> is a

> > great healer.

>

>

>

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