New labs and anti-body question - Elaine or others

September 11, 2003

I am curious about something. Why is he going up and down 10 mgs at a time?

If she was just diagnosed in May of this year, I'd think instead of a 10 mg

jump when he's taking her down a notch, is a little much in one try, don't

you?

I know that around 6-8 weeks we're possibly ready for a meds adjustment,

but I'm thinking if he has to keep bumping her back up to sustain good #'s,

then he's decreasing too quickly possibly?

Sandy~Houston

Original Message:

-----------------

From: nermal1002003 harcho@...

Date: Thu, 11 Sep 2003 18:22:08 -0000

To: graves_support

Subject: New labs and anti-body question - Elaine or others

<tt>

Hi Elaine and all,

Lillie's just gotten new labs - a bit discouraging, as her levels have

gone up again. Though we were told to expect a period of adjusting til

the levels correct. It seems like her endo is doing the right thing,

for the most part, though I'd love to know what you think, as well.

Her new numbers are:

9/5/03

T4 free, direct: 1.54 (0.83 - 1.44)

TSH: 0.045 (0.360 - 5.800)

T3: 172 (91-164)

The doctor suggested she go up in dosage again, to 15 mg per day of

Methimazole, so that's what she's doing, split 3 a day. (up from 10)

So, she started at 30 in May, went down to 20, then down to 10, and

now is going up to 15.

Is this a normal course of events?

Doctor also suggested we get labs again in 6 weeks.

Next time I'll ask for the FREE T3!

(The lab previous to this one, to recap, was:

8/8/03:

T4 free, direct: .86 (0.83 - 1.44)

TSH: 0.055 (0.360 - 5.800)

T3: 113 (91-164)

Her dosage was lowered on 8/11/03, from 20 to 10 mg.)

Here's one more question, please:

Elaine said,

> Having the TSI and TBII is a good way to tell if you have

> stimulating and/or blocking TRAb.

On the subject of anti-body tests:

Would you recommend that everyone ask for these tests who has some eye

involvement with GD? Lillie was given the TSI test to confirm her

diagnosis, at the beginning in May. Her eyes have improved some, but

are still not as they were. The ophthalmologist (who's father has GD!)

is not too worried, says she's doing fine. Would it be worthwhile to

ask for the TBII or the TRab, as well?

I do have trouble sorting all the info, and admire and applaud and

thank those of you who can understand it!!!

Thank you all for being here, it's a great comfort,

Lillie's mom,

**************

********

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The Graves' list is intended for informational purposes only and is not

intended to replace expert medical care.

Please consult your doctor before changing or trying new treatments.

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September 11, 2003

15mg is not a very high dose, so try not to be too discouraged. A

maintenance dose is typically between 2.5 and 10mg. She just needs to get

to a dose where she can stabilize.

At 02:22 PM 9/11/2003, you wrote:

>Hi Elaine and all,

>Lillie's just gotten new labs - a bit discouraging, as her levels have

>gone up again.

September 11, 2003

Shoulda - Woulda - Coulda ....

Sandy is right. It shoulda been 15mg last time. I know we talked about it at

the time.

So you now have more experience and will know next time. It is a slow

learning curve for everyone, unless they have the very RARE doctor that

knows how to do this.

Labs in 6 weeks is too long. Three and a half to four is going to cause less

physical symptoms from this dose possibly not being perfect. It may be 12

1/2 mg for a while next, before the antibodies are down enough for the next

decrease.

Yes... the target keeps moving as we heal.

The other antibody tests are not relevant at this exact moment, as they will

not alter the course of treatment at this time.

Once stable , and on a low dose for some time, then I would want them done

to judge the future, and possible block and replace therapy. But you are not

there yet.

-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.

September 11, 2003

Oh... and....

The eye disease runs a course separate from our Graves',

BUT is greatly influenced by our thyroid levels. Too high or too low, and

the eyes are much worse than need be.

-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.

September 11, 2003

Hi ,

Now you see why we always harp on slow reductions. The avoidance of

" rollercoaster " medication dosage is desirable from my personal experience;

probably she'll be fine on 15 mg. for a bit, and after a while, her levels

will come down to the point she can return to 12.5 then 10 mg. and beyond,

down to an eventual maintenance dose or even remission.

Anyway, the rise in levels is probably nothing to worry about--I personally

went from close to remission, through a rough period a year or so ago back

up to 15 mg. a day, then down to 12.5 mg. a day and 10 and then 7.5 and 5

and now I'm taking about 2 or 2.5 (the pills are hard to split in quarters).

It's a long process, but careful self observation of symptoms and regular

labs helps a lot.

Don't be discouraged!

Terry

>

> Reply-To: graves_support

> Date: Thu, 11 Sep 2003 18:22:08 -0000

> To: graves_support

> Subject: New labs and anti-body question - Elaine or others

>

> Hi Elaine and all,

> Lillie's just gotten new labs - a bit discouraging, as her levels have

> gone up again. Though we were told to expect a period of adjusting til

> the levels correct. It seems like her endo is doing the right thing,

> for the most part, though I'd love to know what you think, as well.

> Her new numbers are:

> 9/5/03

> T4 free, direct: 1.54 (0.83 - 1.44)

> TSH: 0.045 (0.360 - 5.800)

> T3: 172 (91-164)

> The doctor suggested she go up in dosage again, to 15 mg per day of

> Methimazole, so that's what she's doing, split 3 a day. (up from 10)

> So, she started at 30 in May, went down to 20, then down to 10, and

> now is going up to 15.

> Is this a normal course of events?

> Doctor also suggested we get labs again in 6 weeks.

> Next time I'll ask for the FREE T3!

>

> (The lab previous to this one, to recap, was:

> 8/8/03:

> T4 free, direct: .86 (0.83 - 1.44)

> TSH: 0.055 (0.360 - 5.800)

> T3: 113 (91-164)

> Her dosage was lowered on 8/11/03, from 20 to 10 mg.)

>

> Here's one more question, please:

>

> Elaine said,

>> Having the TSI and TBII is a good way to tell if you have

>> stimulating and/or blocking TRAb.

>

> On the subject of anti-body tests:

> Would you recommend that everyone ask for these tests who has some eye

> involvement with GD? Lillie was given the TSI test to confirm her

> diagnosis, at the beginning in May. Her eyes have improved some, but

> are still not as they were. The ophthalmologist (who's father has GD!)

> is not too worried, says she's doing fine. Would it be worthwhile to

> ask for the TBII or the TRab, as well?

>

> I do have trouble sorting all the info, and admire and applaud and

> thank those of you who can understand it!!!

>

> Thank you all for being here, it's a great comfort,

> Lillie's mom,

>

> **************

> ********

>

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

> The Graves' list is intended for informational purposes only and is not

> intended to replace expert medical care.

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

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

> DISCLAIMER

>

> Advertisments placed on this yahoo groups list do not have the endorsement of

> the listowner. I have no input as to what ads are attached to emails.

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

> --------

>

September 11, 2003

Pam, Sandy, ,

Thank you for responding. As you know, it means a lot. I guess we just

learned that smaller dosage adjustments are better.

" the target keeps moving as we heal " is an excellent way to put it.

We'll try to remember that and not get discouraged.

And I'll take the advise to get the labs done sooner rather than later

- thanks! It does make more sense. I don't think the doctors have bad

intentions, it's just that they're not focussing on the

moment-to-moment aspects of healing, as we are.

Lillie knew this would take a year or two, but for a

seventeen-year-old that's a really long time. She feels like her life

is on hold -- which I guess it is in a way. This week has been hard

for her as everyone she knows is back in " regular " school. At first

she was thrilled at the idea of not going to school, but the reality

is different than expected. Reality often is, eh?!

I'd love to be able to return the favor of your attention, and the

only thing I can think of at the moment is a recipe for the flax oil

that's pretty yummy:

Mix the oil in a blender with a cup of low-fat milk, a peice of fruit

(peach is extra-good), 2 peices of ice and a teaspoon or two of maple

syrup.

It actually tastes really good! Lillie likes it and she's a very picky

eater.

Thanks again, and I hope you're all feeling OK.

-

> Shoulda - Woulda - Coulda ....

>

> Sandy is right. It shoulda been 15mg last time. I know we talked

about it at

> the time.

> So you now have more experience and will know next time. It is a

slow

> learning curve for everyone, unless they have the very RARE doctor

that

> knows how to do this.

>

> Labs in 6 weeks is too long. Three and a half to four is going to

cause less

> physical symptoms from this dose possibly not being perfect. It may

be 12

> 1/2 mg for a while next, before the antibodies are down enough for

the next

> decrease.

>

> Yes... the target keeps moving as we heal.

>

> The other antibody tests are not relevant at this exact moment, as

they will

> not alter the course of treatment at this time.

>

> Once stable , and on a low dose for some time, then I would want

them done

> to judge the future, and possible block and replace therapy. But you

are not

> there yet.

>

> -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.

>

> [Non-text portions of this

September 11, 2003

Thank you Terry,

Your description of your own experience is very helpful, and I'll

share this one with Lillie, as you're on the same meds as she is, and

show a good example. The reality of the long-term aspect of this

treatment is just hitting home for all of us. How many years is it

again, since your diagnosis?

Please look at my response to the others for a good flax oil recipe!

Thanks again, and I hope you're feeling OK,

-

> Hi ,

>

> Now you see why we always harp on slow reductions. The avoidance of

> " rollercoaster " medication dosage is desirable from my personal

experience;

> probably she'll be fine on 15 mg. for a bit, and after a while, her

levels

> will come down to the point she can return to 12.5 then 10 mg. and

beyond,

> down to an eventual maintenance dose or even remission.

>

> Anyway, the rise in levels is probably nothing to worry about--I

personally

> went from close to remission, through a rough period a year or so

ago back

> up to 15 mg. a day, then down to 12.5 mg. a day and 10 and then 7.5

and 5

> and now I'm taking about 2 or 2.5 (the pills are hard to split in

quarters).

> It's a long process, but careful self observation of symptoms and

regular

> labs helps a lot.

>

> Don't be discouraged!

>

September 12, 2003

In a message dated 9/12/2003 4:14:40 PM Central Daylight Time,

daisyelaine@... writes:

> This is because the thyroid gland itself (the site of thyroid antibody

> production) slows down when thyroid hormone levels are on the higher side of

the

> normal range.>>

>

Maybe this is a dumb question, but if the thyroid gland is where the

antibodies are produced, and in the case of people like me, my problems are

being

caused by the antibodies attacking the eye tissues and after more than a year,

the

antibodies are still going nuts, why not have the thyroid totally

removed?????

Terri

Graves disease 1979; treated with RAI; exothalmia 1982, treated with IV

steroids; since then on one or another form of replacement hormone. New flare

up

of TED with severe double vision, swelling in intraocular muscles and

inflammation in August of 2002. Currently hypoactive. Treated TED with

prednisone.

It worked while on prednisone, but TED came back worse after. Underwent

Orbital radiation June-July 2003. No change yet.

September 13, 2003

Hi Elaine,

It's interesting that you ask how she feels, because the truth is, she

seems relatively OK, physically. She does not seem hyper. I've talked

with her about what I've learned here about the upper end of the

normal scale being the best for GD patients. She agrees.

When she was diagnosed in May her symptoms were marked, if not severe

and her levels were pretty high. Her pulse was between 110 and 120,

she was trembling, had jumpy-leg, trouble sleeping, was failing out of

school due to an inability to focus or concentrate, was forgetful, hot

all the time, had gained weight, had an enlarged thyroid, bulgy eyes,

etc, etc. Many of these symptoms have been alleviated.

Since the ATD's initial lowering of her high levels, the only time

she's felt really crummy was when she got a bit low on the lab scale.

So, considering your advise, and of others on the board, I think

she'll take the 15 mg for now, but she'll going for a lab test at the

first hint of hypo-ness, or 4 weeks after her last lab, whichever

comes first. She's feeling OK at the moment, having started with the

15 on 9/5.

Our worries about her have more to do with her emotional well-being.

She's somewhat depressed and withdrawn, and we're not sure whether to

attribute that to her GD. Or, I should say that we think she's

responding to her situation, not that her illness is causing her

response, if you know what I mean. That it's perhaps reasonable for

her to be a bit down, considering. Other kids (including her sister)

are starting school, and all that excitement is passing her by. It's

hard for her to know how to answer well-meaning questions about what

she's doing. Her own " alternative " schedule doesn't really kick in for

a few weeks. (art and piano classes, a job at the health food store,

the GED course, and the local youth theater musical). She also getting

her own car soon, and so will not be so dependant on us.

We're hoping that having more to do will perk her up considerably!

As always, thank you so much for your care and consideration of so

many requests! I hope you're feeling well,

-

> Hi ,

> How does Lillie feel? Her labs are only slightly elevated, so she'd

probably

> be fine without the dose change. But if she does have some hyper

symptoms it

> could be that the jump from 20 mg to 10 mg was too much of a jump.

>

> I'm sort of hedging here because these labs fit into a borderline

range.

> As you know TSH stays suppressed for a long time so it's not helpful

now.

> Also, most labs (based on the most widely used methods) use an FT4

reference or

> normal range of 0.8-1.8 or 0.8-2.0. And T3 is more likely to be

falsely

> elevated than the FT3.

>

> I'd still go with the 15 mg to be compliant or appear to be

compliant, but

> I'd watch carefully for hypo symptoms especially after a few weeks.

Of course if

> you feel you have a good relationship with your doctor and Lillie

has no hypo

> symptoms, you could ask about staying on 10 mg longer. I say this

because the

> usual maintenance dose after 6-8 weeks on meds is 2.5-10.0 mg daily

and I

> don't recall your daughter's symptoms being ecxeptionally severe.

And a move into

> hypo is associated with a worsening of eye symptoms. This is because

the

> thyroid gland itself (the site of thyroid antibody production) slows

down when

> thyroid hormone levels are on the higher side of the normal range.

>

> I wouldn't push for the TSI and TBII now because those levels will

be

> changing a great deal over the next few months. Some doctors will

run a second TSI

> after a few months to make sure there's a good response to treatment

but usually

> you can tell this by the lowering of thyroid hormone levels.

However, since

> these abs take 2-3 months to break down before leaving your

circulation, the

> results could be misleading if you have the repeat test too soon.

Like if the

> levels were rising before she started treatment they could

reasonably be the

> same or higher than the first test. You could become falsely

alarmed. Right now,

> it's not unusual to have some fluctuating eye symptoms, and these

generally

> resolve. Overall, younger patients are less likely to have serious

eye disease.

> Many people also have more noticeable eye symptoms premenstrually

due to fluid

> retention and fluctuating thryoid hormone levels related to

> estrogen-dependent changes. Glad to see you on the board, Elaine

>

> [N

September 14, 2003

Hi ,

Thank you so much for your kind support and encouragement. I'm aware

that it's me as much as Lillie who needs support, and I appreciate

everyone's help. It's hard not to get overly worried about our kids

even under the best of circumstances. Now that we've got something

serious to worry about, I marvel at the petty things that used to bug

us! And how well I remember the feeling when I was 17 and my parents

were worried about me. I thought they must not have much respect for

me. If they were worried, they must think I wasn't capable of taking

care of myself. (I wasn't!!).

We are blessed that Lillie doesn't smoke - never has, and doesn't seem

attracted to it. I hadn't thought about second-hand smoke, though, and

I will talk to her about it. Thank you for pointing it out!

She has seen a psychologist a few times in the past and understands

the confidential nature of it. I've tried to encourage her to let me

know if she'd like to see someone (as I think it would be helpful) but

she has said no so far. The cognitive problems that you describe sound

familiar. Are you finding any improvement in that area, with your

treatment?

Today she's cheerful and seems so fine, but all last week she was

miserable. Don't know how to discern what is normal teen angst and

which is GD. sigh. I guess I need to have faith that she'll have the

strength to get through this, and that worrying won't fix it.

Her endocrinologist is in Kingston (further south than Hudson). She's

a young woman named Dr. Ayesha Cheema -- 845) 334-4336. She's thorough

and pleasant, and receptive to suggestions. She doesn't push the RAI,

but I did need to ask for Free T3 to be tested, as she was ordering

the total T3.

Good luck and thank you again!

-

*********

********

> Hi ,

>

> At 49 and dealing with Graves', I can only imagine what Lillie's

going through at 17. I was angry and overwhelmed to be saddled with a

chronic illness, and at 17 it must be even more frustrating. The

symptoms also make me withdraw at times, so I find myself shutting out

friendly contact yet welcoming it when it gets through. I also found

that my emotional reactions are less reliable than before, which again

would be pretty confusing at 17. I find that decisions that used to be

quick and easy now leave me vacillating and unsure. (The example I

used with my psychologist was the situation when you get out of your

car at a store and decide whether it's a safe spot or you should lock

the doors--it's like my guidelines having vanished and I have to

rethink/refeel everything.)

>

> My insurance was willing to pay for counseling as Graves' is

considered to be stress induced (where I would say it's really a

combination of factors, but regardless. Odd that my Mom's insurance

won't pay for counseling for her IBS, which they say is not stress

induced.) I was lucky to be referred to a very objective, practical

psychologist (a former union negotiator) and the sessions have been

very helpful. Counseling might be a great help for Lillie. I do

remember turning down counseling at the age myself because I feared

the doctor would report back to my parents, so you might stress that

it would be confidential.

>

> This is also an important time to impress on her not to smoke, as

there's a clear connection between smoking and worsening of the eye

problems. I'm even irritated by smoke residue on clothing, so she may

have to stay out of her friends' smoke, too. A tough lesson but at

least there's a very concrete goal to it, as irritated eyes are a lot

more immediate of a threat than lung cancer in the far future. (In

fact, you may want to remind Lillie that the skills and strengths she

develops now, including things like stress reduction techniques, will

help her throughout her life and may really give her an edge on

people who don't have to learn " self-defense " till later on.)

>

> As I complain about the problems Graves' has caused me I'm

constantly aware that I have more tools to deal with it than the teens

and children it affects and I have great respect for their parents.

BTW, I'm in Albany and having trouble with my endo, so I may end up

going out of my HMO and contact the endo you mentioned in Hudson. (I'm

not at that point yet but will be if my endo continues to deny me a

TSI test.)

>

> Best wishes,

>

> --- Original Message -----

> From: nermal1002003

> To: graves_support

> Sent: Saturday, September 13, 2003 6:50 PM

> Subject: Re: New labs and anti-body question -

Elaine or others

> Our worries about her have more to do with her emotional

well-being.

> She's somewhat depressed and withdrawn, and we're not sure whether

to

> attribute that to her GD. Or, I should say that we think she's

> responding to her situation, not that her illness is causing her

> response, if you know what I mean. That it's perhaps reasonable

for

> her to be a bit down, considering.

September 14, 2003

Hi ,

I'd recommend a good counselor to anyone going through Graves', but I think some

of the anxiety problems Graves' brought me could also be helped with yoga or

other kids of stress reduction. Eating and sleeping well also helps. In my case

counseling was very helpful because my diagnosis came at an unstable time--the

man I live with was disabled simultaneously, with no income, leaving him at

home, where I work (freelance) and now had to support us both on very little

income. Plus he's an awful yeller and being in pain and cooped up with hyper

me . . . I had the option of moving to my mom's but that would have meant an

increase in my health insurance costs beyond what I could afford. And of course

there were the issues of living with Mom. In short, I really needed help

approaching these decisions and was in no shape to do so.

Lillie may just need a chance to start enjoying her new routine. And if I'm not

overstepping, mothers can benefit from counseling, too . . . or perhaps the two

of you could do a few visits together to discuss concerns.

Best wishes,

--- Original Message -----

From: nermal1002003

To: graves_support

Sent: Sunday, September 14, 2003 12:21 PM

Subject: Re: New labs and anti-body question - Elaine or

others

I've tried to encourage her to let me

know if she'd like to see someone (as I think it would be helpful) but

she has said no so far. The cognitive problems that you describe sound

familiar. Are you finding any improvement in that area, with your

treatment?

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