Re: meeting with endo - HELP

[Guest guest]

Okay, I'm wondering if I made a mistake getting off Tap after 14 months.

I was at 5mg/day for the last three of those months and my TSH went from

3 to 2, wiath a negligible change (if I remember correctly) in my T4.

Three months ago I had a TSI which was normal. My endo wanted to take me

off then but I insisted on at least a few months at 5 (I'd been on 10).

Should I have stayed at 5? Gone to 2.5? On alternate days? My major fear

is that I won't have an easy time going back on Tap if necessary - I know

someone who had RAI because when she went out of remission she had

serious reactions to ATD's the second time around.

Thanks for any info and have a pleasant weekend,

Fay

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[Guest guest]

Hi Shana,

I made a mistake of getting off by a timetable, but had no problem

going back to Tapazole at slightly above the level I was after when

remission was tried. There is info on Elaine's suite 101 on this very

subject. I will quote this paragraph and give the URL. The subject

is " Predicting Remission with ATD's. "

" Even when doctors successfully keep their patients euthyroid, there

is often uncertainty regarding the right time to discontinue ATD's.

European and Japanese doctors routinely test their patients for

thyroid antibodies to gauge remission. Levels of both thyroid

stimulating immunoglobulins (TSI or stimulating TSH receptor

antibodies) and thyrotropin binding inhibitory immunoglobulins (TBII)

can be used to predict remission. Smooth decreases of TSI and TBII

during ATD treatment predict the remission of Graves' hyperthyroidism "

http://www.suite101.com/article.cfm/graves_disease/63859

Hope this helps.

> Okay, I'm wondering if I made a mistake getting off Tap after 14

months.

> I was at 5mg/day for the last three of those months and my TSH went

from

> 3 to 2, wiath a negligible change (if I remember correctly) in my

T4.

> Three months ago I had a TSI which was normal. My endo wanted to

take me

> off then but I insisted on at least a few months at 5 (I'd been on

10).

> Should I have stayed at 5? Gone to 2.5? On alternate days? My major

fear

> is that I won't have an easy time going back on Tap if necessary -

I know

> someone who had RAI because when she went out of remission she had

> serious reactions to ATD's the second time around.

>

> Thanks for any info and have a pleasant weekend,

> Fay

> ________________________________________________________________

> GET INTERNET ACCESS FROM JUNO!

> Juno offers FREE or PREMIUM Internet access for less!

> Join Juno today! For your FREE software, visit:

> http://dl.www.juno.com/get/tagj.

[Guest guest]

Oops, sorry - Got so exited about being able to help, didn't

bother to look close enough at the name. Stupidity, not Grave's Eye

Disease:)

> Okay, I'm wondering if I made a mistake getting off Tap after 14

months.

> I was at 5mg/day for the last three of those months and my TSH went

from

> 3 to 2, wiath a negligible change (if I remember correctly) in my

T4.

> Three months ago I had a TSI which was normal. My endo wanted to

take me

> off then but I insisted on at least a few months at 5 (I'd been on

10).

> Should I have stayed at 5? Gone to 2.5? On alternate days? My major

fear

> is that I won't have an easy time going back on Tap if necessary -

I know

> someone who had RAI because when she went out of remission she had

> serious reactions to ATD's the second time around.

>

> Thanks for any info and have a pleasant weekend,

> Fay

> ________________________________________________________________

> GET INTERNET ACCESS FROM JUNO!

> Juno offers FREE or PREMIUM Internet access for less!

> Join Juno today! For your FREE software, visit:

> http://dl.www.juno.com/get/tagj.

[Guest guest]

No problem, . I'm used to my first name being butchered,

mispronounced etc. That's why I use my middle name.

Fay

________________________________________________________________

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Juno offers FREE or PREMIUM Internet access for less!

Join Juno today! For your FREE software, visit:

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[Guest guest]

Hi ,

If you don't have them by next Friday, call and bug them, or if you are

close enough to the Medical Center, pop in and pick them up. Hopefully your

dr. will follow through on getting them out to you ASAP but don't be

surprised if she doesn't.

Take care!

Jody

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[Guest guest]

Fay,

I can't answer all of it, but a few things: I've been advised (here) that

the every-other-day regimin is not a good one, too many stressful ups and

downs. Better to start chipping pieces off those 5 mg. pills, and keeping at

each level for a few weeks, e.g. 1/4 off so take 3.75, then 1/2 to 2.5, etc.

I tried going to the 3.75 but found myself back w/ hyper symptoms so stayed

at 5 (recently). I think going from 10 to 5, which I also did, was

warranted. I did it against doc's advice, and am fine. It's how I feel, not

his numbers that I followed.

Also, I've been in remission and back on Tap with no problems at all. Hope

this helps,

Terry

>

> Reply-To: graves_support

> Date: Fri, 7 Sep 2001 07:05:44 -0400

> To: graves_support

> Subject: Re: Re: meeting with endo - HELP

>

> Okay, I'm wondering if I made a mistake getting off Tap after 14 months.

> I was at 5mg/day for the last three of those months and my TSH went from

> 3 to 2, wiath a negligible change (if I remember correctly) in my T4.

> Three months ago I had a TSI which was normal. My endo wanted to take me

> off then but I insisted on at least a few months at 5 (I'd been on 10).

> Should I have stayed at 5? Gone to 2.5? On alternate days? My major fear

> is that I won't have an easy time going back on Tap if necessary - I know

> someone who had RAI because when she went out of remission she had

> serious reactions to ATD's the second time around.

>

> Thanks for any info and have a pleasant weekend,

> Fay

> ________________________________________________________________

> GET INTERNET ACCESS FROM JUNO!

> Juno offers FREE or PREMIUM Internet access for less!

> Join Juno today! For your FREE software, visit:

> http://dl.www.juno.com/get/tagj.

>

>

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

> 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.

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

>

>

[Guest guest]

G'Day

I'm late to welcome you to the group as I've been busy this week. But a big

welcome anyway. Others have given you

solid thoughts on how to deal with your situation. I agree with them entirely. I

do know what it feel like to sit in

the chair in front of the endo and have thought blocking, mouth wired shut and

be reduced to a trusting blob! I even

work as a colleague to Drs in hospitals and still when I was acutely ill I

struggled with obtaining a reasonable

amount of power (or sense of it) in the Dr-Patient relationship.

Eventually I had to swallow hard and tell the Dr what I wanted, ask him to

clarify himself and tell him what I meant

by certain comments. Since then it has been 100% better. I did have to practise

what I wanted to say, make sure I

felt ready and 'step past' the anxiety I felt. It was worth it.

All the best for your appointment. Let us know how it goes.

Take Care, Cheers

Caroline

galdalf@... wrote:

> Hi everyone,

> I am a new member and have been lurking for a few days now, my

> timing on that not so good. I was diagnosed with Graves desease about

> 2 years ago. At that time I was given three options of treatment.

> Thyroid drugs(MME), ablation or surgury. I chose the drug and did

> quite well for that year. My main symptoms were jitters and heart

> palpatations and they stayed under control. After about 16 months, I

> was weaned off the drug and my levels remained normal for a few

> months after. I had a relapse at that time and was told to go back on

> 10mg of MME until the next appointment. For some reason, there was no

> next appointment so I stayed off and on my remaining MME. Since that

> time my Primary care physician(new) had me see another endo. This was

> about a month ago and she wanted to get my level normal before

> scheduling RAI. I tried to tell her RAI was not for me so she gave me

> a month to come to my senses. I am now on 10mg of Tapazole and again

> responding well. I do not have my numbers but will be sure to get

> them tomorrow.

> During the first go-around with graves, I knew little and trusted my

> doctor. I only knew the the thyroid needed iodine and kelp had

> iodine. I was told to go ahead and eat kelp if it made me happy. So

> much for trust. Thanks to Elaine here and at Suite 101, and

> ithyroid, Atomic Women, Shoman,Yahoo support groups and you all,

> I have gained some knowledge. I have read about goitrogens,

> bugleweed, motherwort, lemon balm, copper, magnesium, L-carnitine and

> lately, lots on iodine. I will not have ablation done and there in

> lays my current problem. I have no idea what to say to the

> endocrinologist tomorrow when she calls me a fool for not having RAI.

> What should I ask for and reasonable expect to get? Can I ask for

> tapizole, testing, results and nothing else like I want to

> Thank you for any thoughts on the matter.

>

>

>

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

> 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.

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

>

>

[Guest guest]

Hi Caroline,

Thanks for the welcome. The meeting was last Thursday and it went

well enough. There is no problem with them agreeing to long-term

maintenance with Tapazole so long as I get the maintenance level down

below 10mg. They have a policy of providing blood test result via

mail to their patients, so we shall see how that goes. The support

from this group has been terrific and I am much more comfortable than

before.

>

> > Hi everyone,

> > I am a new member and have been lurking for a few days now, my

> > timing on that not so good. I was diagnosed with Graves desease

about

> > 2 years ago. At that time I was given three options of treatment.

> > Thyroid drugs(MME), ablation or surgury. I chose the drug and did

> > quite well for that year. My main symptoms were jitters and heart

> > palpatations and they stayed under control. After about 16

months, I

> > was weaned off the drug and my levels remained normal for a few

> > months after. I had a relapse at that time and was told to go

back on

> > 10mg of MME until the next appointment. For some reason, there

was no

> > next appointment so I stayed off and on my remaining MME. Since

that

> > time my Primary care physician(new) had me see another endo. This

was

> > about a month ago and she wanted to get my level normal before

> > scheduling RAI. I tried to tell her RAI was not for me so she

gave me

> > a month to come to my senses. I am now on 10mg of Tapazole and

again

> > responding well. I do not have my numbers but will be sure to get

> > them tomorrow.

> > During the first go-around with graves, I knew little and

trusted my

> > doctor. I only knew the the thyroid needed iodine and kelp had

> > iodine. I was told to go ahead and eat kelp if it made me happy.

So

> > much for trust. Thanks to Elaine here and at Suite 101, and

> > ithyroid, Atomic Women, Shoman,Yahoo support groups and you

all,

> > I have gained some knowledge. I have read about goitrogens,

> > bugleweed, motherwort, lemon balm, copper, magnesium, L-carnitine

and

> > lately, lots on iodine. I will not have ablation done and there in

> > lays my current problem. I have no idea what to say to the

> > endocrinologist tomorrow when she calls me a fool for not having

RAI.

> > What should I ask for and reasonable expect to get? Can I ask for

> > tapizole, testing, results and nothing else like I want to

> > Thank you for any thoughts on the matter.

> >

> >

> >

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

> > 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.

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

> >

> >

[Guest guest]

Hi Caroline,

Thanks for the welcome. The meeting was last Thursday and it went

well enough. There is no problem with them agreeing to long-term

maintenance with Tapazole so long as I get the maintenance level down

below 10mg. They have a policy of providing blood test result via

mail to their patients, so we shall see how that goes. The support

from this group has been terrific and I am much more comfortable than

before.

>

> > Hi everyone,

> > I am a new member and have been lurking for a few days now, my

> > timing on that not so good. I was diagnosed with Graves desease

about

> > 2 years ago. At that time I was given three options of treatment.

> > Thyroid drugs(MME), ablation or surgury. I chose the drug and did

> > quite well for that year. My main symptoms were jitters and heart

> > palpatations and they stayed under control. After about 16

months, I

> > was weaned off the drug and my levels remained normal for a few

> > months after. I had a relapse at that time and was told to go

back on

> > 10mg of MME until the next appointment. For some reason, there

was no

> > next appointment so I stayed off and on my remaining MME. Since

that

> > time my Primary care physician(new) had me see another endo. This

was

> > about a month ago and she wanted to get my level normal before

> > scheduling RAI. I tried to tell her RAI was not for me so she

gave me

> > a month to come to my senses. I am now on 10mg of Tapazole and

again

> > responding well. I do not have my numbers but will be sure to get

> > them tomorrow.

> > During the first go-around with graves, I knew little and

trusted my

> > doctor. I only knew the the thyroid needed iodine and kelp had

> > iodine. I was told to go ahead and eat kelp if it made me happy.

So

> > much for trust. Thanks to Elaine here and at Suite 101, and

> > ithyroid, Atomic Women, Shoman,Yahoo support groups and you

all,

> > I have gained some knowledge. I have read about goitrogens,

> > bugleweed, motherwort, lemon balm, copper, magnesium, L-carnitine

and

> > lately, lots on iodine. I will not have ablation done and there in

> > lays my current problem. I have no idea what to say to the

> > endocrinologist tomorrow when she calls me a fool for not having

RAI.

> > What should I ask for and reasonable expect to get? Can I ask for

> > tapizole, testing, results and nothing else like I want to

> > Thank you for any thoughts on the matter.

> >

> >

> >

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

> > 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.

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

> >

> >

[Guest guest]

Good to hear this .

I hope it contiues to go well. I hope you get a chance to discuss your blood

work and not just get it by mail and

have to wait ages for an appt. with the endo.

Cheers

Caroline

galdalf@... wrote:

> Hi Caroline,

> Thanks for the welcome. The meeting was last Thursday and it went

> well enough. There is no problem with them agreeing to long-term

> maintenance with Tapazole so long as I get the maintenance level down

> below 10mg. They have a policy of providing blood test result via

> mail to their patients, so we shall see how that goes. The support

> from this group has been terrific and I am much more comfortable than

> before.

>