just came back from the GP, first blood work results

[Guest guest]

Thanks, . As for the pregnancy issue, I know what you mean -- I

wonder if I can handle it. Still thinking...

But get this: I had seen the physician's assistant yesterday because my GP

was too busy. But I called the office today, asking about my WBC, to see if

there was a problem to really be worried about. Since I also mentioned that

I now had a swollen lymph gland near the swollen lymph node (both near the

rash), I asked someone to mention it to my doctor, and he called me in. So

he looked at the rash, and said it looks like folliculitis. Gave me an

antibiotic, and told me to come back on Monday. Since he thinks that it is

unrelated to the PTU, he told me that I can go back on the PTU. We looked

at my lab results, and they are as follows:

FT4: 0.9 (0.8 - 1.18)

FT3: 253 (230 - 420)

Total T4: 4.8 ( 4.5 - 12)

TSH: 0.04

WBC a little low, but still within range at 5.7 (3.8 - 10.8)

Also have high AST and ALT (not sure what these are, but I think related to

liver), especially the AST (61, with range 2-35). Anyone know what this means?

This is after 4 weeks on 200 mg of PTU. I asked the doc if I should lower

the PTU, and he said I could take 100 or 50 mg, but perhaps take 100 so it

wouldn't be too drastic a drop.

Any ideas? What could happen if I drop to 100, and is that too much of a

decrease? On the other hand, is it still too much PTU? (I was mildly

hyperthyroid to begin with, and only TSH was out of range, but I had

bothersome palpitations).

Thank you,

At 07:04 AM 7/11/2003 -0400, you wrote:

>Hi ,

>

>When my endo (actually her partner) felt I was reacting to the Tap, she

>switched me to PTU immediately. (I had only started treatment a week

>before and was pretty hyper.) That didn't improve my swollen glands, but

>the itching seemed to decrease. At that point I downplayed the itching as

>I was worried they'd insist on RAI.

[Guest guest]

> Also have high AST and ALT (not sure what these are, but I think

> related to

> liver), especially the AST (61, with range 2-35). Anyone know what

> this means?

>

IIRC Elaine's said that liver enzymes need to get way into the 3 digits

to be really serious; this range sounds like it may be from the GD

itself, especially since you only recently started PTU. But, I don't know

if she was referring to this specific test. I do think so , based on the

normal ranges.

> This is after 4 weeks on 200 mg of PTU. I asked the doc if I should

> lower

> the PTU, and he said I could take 100 or 50 mg, but perhaps take 100

> so it

> wouldn't be too drastic a drop.

> Any ideas? What could happen if I drop to 100, and is that too much

> of a

> decrease? On the other hand, is it still too much PTU?

How about 150 for say, 3 weeks, and then drop to 100. Some people really

do need to be on ATDs for short term only, but it is good to do this as

gradually as possible.

Take care, Fay

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[Guest guest]

Hi Fay,

Thanks for your response.

I am already feeling slightly hypo, so I'm worried about going up on the

dose. I really hope I can get in to see the new endo soon (will find out

tomorrow when I can). These swollen glands on my neck are a concern -- now

one popped up in the front, and my neck is stiff. WBC was OK, though hope

it's not dropping -- I think I will request another WBC.

At 08:21 AM 7/13/2003 -0400, you wrote:

> > Also have high AST and ALT (not sure what these are, but I think

> > related to

> > liver), especially the AST (61, with range 2-35). Anyone know what

> > this means?

> >

>IIRC Elaine's said that liver enzymes need to get way into the 3 digits

>to be really serious; this range sounds like it may be from the GD

>itself, especially since you only recently started PTU. But, I don't know

>if she was referring to this specific test. I do think so , based on the

>normal ranges.

>

> > This is after 4 weeks on 200 mg of PTU. I asked the doc if I should

> > lower

> > the PTU, and he said I could take 100 or 50 mg, but perhaps take 100

> > so it

> > wouldn't be too drastic a drop.

> > Any ideas? What could happen if I drop to 100, and is that too much

> > of a

> > decrease? On the other hand, is it still too much PTU?

>

>How about 150 for say, 3 weeks, and then drop to 100. Some people really

>do need to be on ATDs for short term only, but it is good to do this as

>gradually as possible.

>

>Take care, Fay

[Guest guest]

Hi :

Just my opinion...but whatever you end up doing in the

long run, I really suggest that you adjust downwards

your dosage of the ATD very, very slowly.

For myself, I was on too low of a dosage of PTU for

2 years (yes, 2 years). Now that I upped the dosage

just slightly...I have been stabilizing...even my eyes

are much, much better in every respect. My double

vision is almost gone & the buling is down 50% in

just a couple of months. I now really believe I will go

into remission. As to how long it will take me, I don't

know & I don't really care. I'm doing fine with 50mg.

3 times a day (exactly every 8 hours, 1 pill).

I tried a lower dosage & I always had problems, but

I really believed that the *only* way to get over Graves

was to wean off of the PTU faster. So I was dropping

the dose faster than my body was ready for.

Now I'll be lowering...but I can promise you that I'm

going to cut the pills in tiny pieces & lower just a

tiny, tiny bit at a time. It's what works best.

My point to you...adjust slowly. Also realize that blood

tests may not show what's really changing for awhile

(they are a lagging indicator or how you may be feeling.)

And as far as the TSH...forget it...it seldom gives an

accurate reading anytime. I've been hyper to hypo in

a 3 month period with no change of medications (as

measured by a TSH test.)

Take care & best,

Ron

,?Ci?aves_support , Conner

<aconner@a...> wrote:

> Hi Fay,

> Thanks for your response.

> I am already feeling slightly hypo, so I'm worried about going

up on the

> dose. I really hope I can get in to see the new endo soon (will

find out

> tomorrow when I can). These swollen glands on my neck are a

concern -- now

> one popped up in the front, and my neck is stiff. WBC was OK,

though hope

> it's not dropping -- I think I will request another WBC.

>

>

> At 08:21 AM 7/13/2003 -0400, you wrote:

> > > Also have high AST and ALT (not sure what these are, but I

think

> > > related to

> > > liver), especially the AST (61, with range 2-35). Anyone

know what

> > > this means?

> > >

> >IIRC Elaine's said that liver enzymes need to get way into the

3 digits

> >to be really serious; this range sounds like it may be from the

GD

> >itself, especially since you only recently started PTU. But, I

don't know

> >if she was referring to this specific test. I do think so , based

on the

> >normal ranges.

> >

> > > This is after 4 weeks on 200 mg of PTU. I asked the doc if I

should

> > > lower

> > > the PTU, and he said I could take 100 or 50 mg, but

perhaps take 100

> > > so it

> > > wouldn't be too drastic a drop.

> > > Any ideas? What could happen if I drop to 100, and is that

too much

> > > of a

> > > decrease? On the other hand, is it still too much PTU?

> >

> >How about 150 for say, 3 weeks, and then drop to 100. Some

people really

> >do need to be on ATDs for short term only, but it is good to do

this as

> >gradually as possible.

> >

> >Take care, Fay

>

>

>

[Guest guest]

Thanks, Ron. I will DEFINITELY wean off slowly and make any reductions

gradually as possible. However, I think in my case I started out at too

high a dose. Hopefully this shift will not be too drastic (from 200 to 100

mg PTU), but I think I was going hypO fast. I started out mildly hyperT,

and my T levels (except TSH .01) looked subclinical.

I have an appointment with a new endo Friday, and he should be able to

advise me. The one who I was seeing wanted to yank me off the meds all

together, so I think this is a reasonable compromise. I hope I'm not being

foolish taking the meds with having developed these swollen glands (GP

thinks the rash on my scalp is folliculitis and the glands are responding

to that), but going to see the GP today, and talk to the endo later or

tomorrow. Hope he doesn't yell at me.

One question: if I am having a reaction to the PTU, wouldn't the rash be itchy?

At 09:34 AM 7/14/2003 +0000, you wrote:

>Hi :

>

>Just my opinion...but whatever you end up doing in the

>long run, I really suggest that you adjust downwards

>your dosage of the ATD very, very slowly.

>

>For myself, I was on too low of a dosage of PTU for

>2 years (yes, 2 years). Now that I upped the dosage

>just slightly...I have been stabilizing...even my eyes

>are much, much better in every respect. My double

>vision is almost gone & the buling is down 50% in

>just a couple of months. I now really believe I will go

>into remission. As to how long it will take me, I don't

>know & I don't really care. I'm doing fine with 50mg.

>3 times a day (exactly every 8 hours, 1 pill).

>

>I tried a lower dosage & I always had problems, but

>I really believed that the *only* way to get over Graves

>was to wean off of the PTU faster. So I was dropping

>the dose faster than my body was ready for.

>

>Now I'll be lowering...but I can promise you that I'm

>going to cut the pills in tiny pieces & lower just a

>tiny, tiny bit at a time. It's what works best.

>

>My point to you...adjust slowly. Also realize that blood

>tests may not show what's really changing for awhile

>(they are a lagging indicator or how you may be feeling.)

>

>And as far as the TSH...forget it...it seldom gives an

>accurate reading anytime. I've been hyper to hypo in

>a 3 month period with no change of medications (as

>measured by a TSH test.)

>

>Take care & best,

>Ron

[Guest guest]

Hi :

As far as any skin reaction to either PTU or Tepazole,

I am quite sure it would be itchy. Please know that a

lot of people get rashes & they sometimes " incorrectly "

blame it on the PTU.

If you go from 200mg a day to 100mg a day " right away,

all in one day " , I do think that is withdrawing too fast.

You see, you may only need the 100mg...or maybe even

less...but the body can react with kind of a jolt when it

gets 1/2 of the medication all in one day.

Can you go from the 200mg to 100mg over a week or

preferably 2 weeks? I don't think it would make any

difference to you in the long run...and it might be safer

and easier on your body & your health. The thyroid

can react with a thyroid storm...sometimes just because

a medication is taken away too fast. (I really want you

to get to where you want to be...and still to protect

yourself and be safe.)

Note about me: I was first started at 300mg PTU a

day (100mg. every 8 hours). I then was " moved up " :

to 450mg. a day (150mg. every 8 hours. I went

extremely Hypo...so much that no alarm would wake

me up & I needed 3-4 cups of coffee before I'd get

into the shower.

But then my prior doctor told me to drop the 450mg down

to 150mg all at once. Wow...within 2 days, I was literally

holding on and praying that I'd make it through the day.

I went into extremely Hyper very fast...all due to dropping

too fast.

Sorry for the long posting...I just want you to be aware

of the possible dangers of changing dosages too

fast. (Most of the docs...including Endos...dodn't have

a clue about " most " of what Graves is all about...even

some of the so-called top docs.)

Best to you...keep us posted!

Ron

> >Hi :

> >

> >Just my opinion...but whatever you end up doing in the

> >long run, I really suggest that you adjust downwards

> >your dosage of the ATD very, very slowly.

> >

> >For myself, I was on too low of a dosage of PTU for

> >2 years (yes, 2 years). Now that I upped the dosage

> >just slightly...I have been stabilizing...even my eyes

> >are much, much better in every respect. My double

> >vision is almost gone & the buling is down 50% in

> >just a couple of months. I now really believe I will go

> >into remission. As to how long it will take me, I don't

> >know & I don't really care. I'm doing fine with 50mg.

> >3 times a day (exactly every 8 hours, 1 pill).

> >

> >I tried a lower dosage & I always had problems, but

> >I really believed that the *only* way to get over Graves

> >was to wean off of the PTU faster. So I was dropping

> >the dose faster than my body was ready for.

> >

> >Now I'll be lowering...but I can promise you that I'm

> >going to cut the pills in tiny pieces & lower just a

> >tiny, tiny bit at a time. It's what works best.

> >

> >My point to you...adjust slowly. Also realize that blood

> >tests may not show what's really changing for awhile

> >(they are a lagging indicator or how you may be feeling.)

> >

> >And as far as the TSH...forget it...it seldom gives an

> >accurate reading anytime. I've been hyper to hypo in

> >a 3 month period with no change of medications (as

> >measured by a TSH test.)

> >

> >Take care & best,

> >Ron

>

>

>

[Guest guest]

Ron,

Thank you so much for your message! And please don't apologize for the

" long post " -- the more the better, as far as I'm concerned. Still trying

to get a " feel " for how this works, especially when it comes to titrating.

Your message reassures me that I'm going in the right direction. Glad that

the rash would be itchy (that's what I'd expect, but no one has explicitly

stated that it would when I searched the Net -- just said " rash " or

" hives " ). I thought the rash would itch due to release of histamine, but

wasn't sure if it was a different type of rash (I didn't go to medical

school!).

When I called the endo yesterday (the one who advised me to stop the meds

completely for the past 3-4 days to " see if the rash went away " -- I

continued on them at 100 mg with my GP's advice, after the GP said the rash

looked unrelated), I asked the endo about a decrease, and he said " the TSH

is still suppressed. " I said what about the FT4 (which was already at the

bottom of the normal range), and he said I could go to 150 mg. [i am

wondering if this is the best I can do when it comes to a doc, but am

seeing another endo Friday who says most of his patients are on ATDs. If

you have a thought on this, please share.] So I was worried that I was

still on too high a dose, esp. as my liver functions showed some increase

since on the meds. And I was all right for the three days on 100. But I

also feel that you're right, I should go more gradually. From what you say,

a dose reduction over two weeks would be a good idea, so is that 150 this

week and 125 next? Or are those steps too abrupt, and go 12.5 at a time? [i

will of course clear it with the doc.]

If I am blocking the thyroid, will I end up being too depleted in the next

few weeks? And if so, how long does it take to get back into normal? Now

it's my turn to apologize -- sorry to be asking so many questions! Just

don't know about when dose adjustments are indicated or how it's done well

(specifically), and I think I need to be proactive in this endeavor.

Gratefully,

Alllison

At 11:21 AM 7/15/2003 +0000, you wrote:

>Hi :

>

>As far as any skin reaction to either PTU or Tepazole,

>I am quite sure it would be itchy. Please know that a lot of people get

>rashes & they sometimes " incorrectly " blame it on the PTU.

[Guest guest]

,

I haven't written much on this board lately, but I've been following your

posts. Ron is giving you good advice. I just wanted to let you know that

when I started TaP, a few weeks into it, I started getting hives (which I'd

never had in my life) and my liver panel numbers went up. After reducing

and getting on a lower dose, the hives went away and the liver counts went

down. I think the body has so many adjustments to make while the

medications are working to get your body back to an even keel, that it kind

of goes haywire for a time. Totally non-medical point of view. As for

doctors, good luck. I've yet to find a good doctor and pretty much take

care of myself. They give me the meds and I tell them what to do...give me

this blood test, I need to check my numbers, etc. The doctor who sees a lot

of patients on ATDs sound heavenly! Hope he turns out to be " the one " !

Much Luck,

Kristi

Been on Tap (2.5-5mg) for about a year and a half.

Re: Re: just came back from the GP, first blood

work results

> Ron,

> Thank you so much for your message! And please don't apologize for the

> " long post " -- the more the better, as far as I'm concerned. Still trying

> to get a " feel " for how this works, especially when it comes to titrating.

>

> Your message reassures me that I'm going in the right direction. Glad that

> the rash would be itchy (that's what I'd expect, but no one has explicitly

> stated that it would when I searched the Net -- just said " rash " or

> " hives " ). I thought the rash would itch due to release of histamine, but

> wasn't sure if it was a different type of rash (I didn't go to medical

> school!).

>

> When I called the endo yesterday (the one who advised me to stop the meds

> completely for the past 3-4 days to " see if the rash went away " -- I

> continued on them at 100 mg with my GP's advice, after the GP said the

rash

> looked unrelated), I asked the endo about a decrease, and he said " the TSH

> is still suppressed. " I said what about the FT4 (which was already at the

> bottom of the normal range), and he said I could go to 150 mg. [i am

> wondering if this is the best I can do when it comes to a doc, but am

> seeing another endo Friday who says most of his patients are on ATDs. If

> you have a thought on this, please share.] So I was worried that I was

> still on too high a dose, esp. as my liver functions showed some increase

> since on the meds. And I was all right for the three days on 100. But I

> also feel that you're right, I should go more gradually. From what you

say,

> a dose reduction over two weeks would be a good idea, so is that 150 this

> week and 125 next? Or are those steps too abrupt, and go 12.5 at a time?

[i

> will of course clear it with the doc.]

>

> If I am blocking the thyroid, will I end up being too depleted in the next

> few weeks? And if so, how long does it take to get back into normal? Now

> it's my turn to apologize -- sorry to be asking so many questions! Just

> don't know about when dose adjustments are indicated or how it's done well

> (specifically), and I think I need to be proactive in this endeavor.

>

> Gratefully,

> Alllison

>

>

> At 11:21 AM 7/15/2003 +0000, you wrote:

> >Hi :

> >

> >As far as any skin reaction to either PTU or Tepazole,

> >I am quite sure it would be itchy. Please know that a lot of people get

> >rashes & they sometimes " incorrectly " blame it on the PTU.

>

>

>

[Guest guest]

Thanks, Kristi! Glad to know the liver usually improved after meds are

reduced -- it makes sense. I am afraid to try milk thistle, as I haven't

experimented with herbs and don't want to throw another confusing element

into the mix (don't know if it interferes or has other negative effects),

but I wonder if this new doc will have an idea about how to help the liver

stay in good shape. Some people say lemon water helps. Anyway, I had to

smile when you say " hope he's 'the one' " ; I said the same thing to my

husband the other day, and he said that was funny.

:-)

At 09:31 AM 7/15/2003 -0500, you wrote:

>,

>I haven't written much on this board lately, but I've been following your

>posts. Ron is giving you good advice.

[Guest guest]

I tried the milk thistle, but didn't really see any improvement. After

getting on a maintenance dose of 10 mg a day, all my blood tests came back

" normal " on the liver. I can't remember how long it was before that

happened, but I remember having several blood tests with the liver counts

elevated. I remember my endo at the time initially telling me I might have

hepatitis. Of course I didn't. It was all graves related. I've had so much

trouble with doctors and this disease that I've kind of given up on the idea

of finding one who actually knows what he or she is doing. BUT, I agree, it

is a little like finding a husband...someone who will listen, someone who

will care about how you feel, someone who knows anything about the thyroid.

Kristi

Re: Re: just came back from the GP, first blood

work results

> Thanks, Kristi! Glad to know the liver usually improved after meds are

> reduced -- it makes sense. I am afraid to try milk thistle, as I haven't

> experimented with herbs and don't want to throw another confusing element

> into the mix (don't know if it interferes or has other negative effects),

> but I wonder if this new doc will have an idea about how to help the liver

> stay in good shape. Some people say lemon water helps. Anyway, I had to

> smile when you say " hope he's 'the one' " ; I said the same thing to my

> husband the other day, and he said that was funny.

> :-)

>

>

> At 09:31 AM 7/15/2003 -0500, you wrote:

> >,

> >I haven't written much on this board lately, but I've been following your

> >posts. Ron is giving you good advice.

>

>

>