I think I found my angel of mercy!

March 28, 2001

Hi ,

Wow, your new doc sounds great. You're fortunate to have found someone who

understands the need for higher thyroid hormone levels during pregnancy.

As for RAI, you have plenty of time to think that one over, but, having been

there, I'd advise you to pass. It's true that you do seem to have lots of

fluctuation, but the normal waxing and waning of GD are profoundly influenced

by your estrogen levels. Under the care of a good doc and with your estrogen

levels eventually settling down, you may do much better.

I, too, thought that with proper management after RAI, I'd feel great. But

it's not just a question of how much thyroid hormone you have. There seems to

be something with the quality once you have no back up hormone of your own.

Anyway, I naively thought I could just pop extra thyroid hormone as needed as

I have a good source of extra pharmaceuticals. However, that's not the case

at all. Too much and I get palpitations and eye quivers and eat like there's

no tomorrow. Too little and I have sleep apnea and sluggishness. And even

after 11 years, I can't say I'm on the perfect dose. Life was much simpler

when I was hyperthyroid.

Your doc is right in reminding you that RAI is an easy way to get rid of your

hyperthyroid symptoms. And some people do fine after having it. I just

haven't met many of them. Good luck, Elaine

March 28, 2001

HI everyone! Have been to three different appointments this week and so

thrilled to tell you all there is a wonderful endo in NJ . I just had to go

crazy the last four years finding out. This endo is 30 yrs. old and very nice

Romanian woman. She is also a mom of a little 2 yr old girl. And the very best

of all she believes that thyroid hormone levels are indicative of one's status

and could basically give a hoot about TSH, especially in those Grave's persons

with suppression for so long. Best of all she uses T4 and T3 supplements. I

brought my entire lab history and med history for the last four years and she

was lets just say disappointed in how I was managed. She was particularly

disturbed with my last pregnancy and overtreatment with PTU. In one of my last

messages I told you how my FREE T4 was low and even hypo for most of my

pregnancy and how I had porblemsand delivered early. This new endo wants to

keep me in the proper upper FT4 range. She also validated my hypo symptoms from

2 years ago and feels that I most likely need to be in the upper normal ranges

to be euthyroid. Finally someone who believes me!

She did suggest RAI post pregnancy but not forcing it on me. I know I have

time but do any of you suggest this as a benefit since I tend to fluctuate quite

a bit? Knowing she would treat me with replacements as soon as hypo symptoms

arise and not waiting for the TSH is this an option. I have been so fearful

before but feel alittle more a ease with her philosophy of replacement meds?

ANy suggestions? Thanks, I.

March 28, 2001

,

That is wonderful. Having a doctor who you feel comfortable with makes a

difference sometimes. Tomorrow I go to the D.O. who treated me almost 4 yrs.

ago, he has agreed to listen to what I have to say and treat me how I want

to be treated.

Debbie R.

March 28, 2001

Hi -

No. Can't suggest this route if you aren't close to going through menopause

yet (at 37, you probably have quite a few years to go). Even then, I think

it's difficult to find a doctor that can treat you satisfactorily. T3 is a

wonderful drug for me (compared to being on T4 alone-where I was down all

the time) but it doesn't last long enough so I still have some down times.

The poor endo has been working on me for 1 1/2 yrs and we still can't get it

right. We've done all sorts of changes and combos and no matter what we do,

it's still not the same as having my own thyroid. He's been willing to try

anything I've suggested too.

Having RAI and subsequently no thyroid function has been a 14 year nightmare

for me. I'd give anything (except my husband and son) to have my thyroid

back. I wouldn't be quite so reluctant to recommend RAI in patients if they

could be guaranteed some thyroid function of their own indefinitely

afterwards but they can't. I have only talked to one person that had any

thyroid function 10 years post-RAI and that person didn't have much left.

And there's a French study lambasting U.S. doctors for even trying to make

their patients euthyroid with RAI.

I wonder why she's worrying about RAI when you've been having hypo problems?

I guess it must be because she'll worry that you'll eventually go hyper

again. Anyhow, women of childbearing age are supposed to have thyroid

levels that fluctuate a bit (although not hyper to hypo and back again) and

your body no longer has the ability to accomodate changes once you have no

thyroid function left.

Take care,

I think I found my angel of mercy!

> HI everyone! Have been to three different appointments this week and so

thrilled to tell you all there is a wonderful endo in NJ . I just had to go

crazy the last four years finding out. This endo is 30 yrs. old and very

nice Romanian woman. She is also a mom of a little 2 yr old girl. And the

very best of all she believes that thyroid hormone levels are indicative of

one's status and could basically give a hoot about TSH, especially in those

Grave's persons with suppression for so long. Best of all she uses T4 and

T3 supplements. I brought my entire lab history and med history for the last

four years and she was lets just say disappointed in how I was managed. She

was particularly disturbed with my last pregnancy and overtreatment with

PTU. In one of my last messages I told you how my FREE T4 was low and even

hypo for most of my pregnancy and how I had porblemsand delivered early.

This new endo wants to keep me in the proper upper FT4 range. She also

validated my hypo symptoms from 2 years ago and feels that I most likely

need to be in the upper normal ranges to be euthyroid. Finally someone who

believes me!

> She did suggest RAI post pregnancy but not forcing it on me. I know I

have time but do any of you suggest this as a benefit since I tend to

fluctuate quite a bit? Knowing she would treat me with replacements as soon

as hypo symptoms arise and not waiting for the TSH is this an option. I

have been so fearful before but feel alittle more a ease with her philosophy

of replacement meds? ANy suggestions? Thanks, I.

March 29, 2001

JUlie, the doc just wondered if I had considered RAI before because of

history. I told her I wouldn't because of my fear of not having some one

give me adequate replacement and then always being hypo. I have had

fluctuations between hyper and hypo, I just don't go as hyper anymore. I am

assuming that my thyroid has gotten smaller and also because of the

destructive antibodies probably not as active in hormone production. I

think the endo was just trying to get my feeling on RAI thinking that maybe

if I got nuked I could avoid more drastic fluctuations. I didn't get the

feeling like she was pushing it. But for now she said let's just deal with

the little one in my womb! Thanks for the advice though. Any suggestion is

well taken... I.

I think I found my angel of mercy!

>

> > HI everyone! Have been to three different appointments this week and so

> thrilled to tell you all there is a wonderful endo in NJ . I just had to

go

> crazy the last four years finding out. This endo is 30 yrs. old and very

> nice Romanian woman. She is also a mom of a little 2 yr old girl. And

the

> very best of all she believes that thyroid hormone levels are indicative

of

> one's status and could basically give a hoot about TSH, especially in

those

> Grave's persons with suppression for so long. Best of all she uses T4 and

> T3 supplements. I brought my entire lab history and med history for the

last

> four years and she was lets just say disappointed in how I was managed.

She

> was particularly disturbed with my last pregnancy and overtreatment with

> PTU. In one of my last messages I told you how my FREE T4 was low and

even

> hypo for most of my pregnancy and how I had porblemsand delivered early.

> This new endo wants to keep me in the proper upper FT4 range. She also

> validated my hypo symptoms from 2 years ago and feels that I most likely

> need to be in the upper normal ranges to be euthyroid. Finally someone

who

> believes me!

> > She did suggest RAI post pregnancy but not forcing it on me. I know

I

> have time but do any of you suggest this as a benefit since I tend to

> fluctuate quite a bit? Knowing she would treat me with replacements as

soon

> as hypo symptoms arise and not waiting for the TSH is this an option. I

> have been so fearful before but feel alittle more a ease with her

philosophy

> of replacement meds? ANy suggestions? Thanks, I.

>

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

> 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.

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

>

March 29, 2001

Hi Jody-

I'm not sure if I can find the study in this mess (the Ron study I use a

lot). There should be an abstract on Medscape though. If I remember right,

the study is from 1996 or after.

You guys are going to make me clean this office yet. I'm the great

procrastinator but it truly is a terrible mess. One of those that you don't

know where to start. It is, however, supposed to be my current project.

Take care,

Re: I think I found my angel of mercy!

> Hi ,

>

> >>>>there's a French study lambasting U.S. doctors for even trying to make

> >>>>their patients euthyroid with RAI<<<<

>

> Where is this study, any idea where it can be read?

> Thanks,

> Jody

> _________________________________________________________________

> Get your FREE download of MSN Explorer at http://explorer.msn.com

>

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

> 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.

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

>

March 29, 2001

,

LOL...sounds like my dining room, which houses by computer and file

cabinets...I am making headway though. Bought myself a paper punch and

several 1 1/2 " notebooks and labeled them...and am forcing myself to put

things in them as I print them up! It helps a lot...good luck with your

project.

Take care,

Jody

_________________________________________________________________

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March 30, 2001

Hi again Jody-

This study is not against the use of RAI. They didn't seem to have any

problems with it. Rather, it is about the U.S. practice of trying to render

hyperthyroid patients euthyroid (normal) with RAI. It had particular

significance for me because that's one of the reasons that I agreed to RAI.

I was guaranteed that I'd either be euthyroid or maybe a little hypothyroid

(which I was told could easily be corrected). That's not what happened at

all. I have no thyroid function left.

Take care,

Re: I think I found my angel of mercy!

> Hi ,

>

> >>>>there's a French study lambasting U.S. doctors for even trying to make

> >>>>their patients euthyroid with RAI<<<<

>

> Where is this study, any idea where it can be read?

> Thanks,

> Jody

>

March 30, 2001

Hi

This sounds like a great Dr. I hope she and work well together. Being off to a

good start is a very positive sign. I must agree with the others- wait before

deciding on RAI and anything that is permanent. I think you'll find that with

this Dr working with you, you'll feel better than you have in ages. Your

pregnancy is certainly a big factor in the fluctuations and it will take a while

for your hormonal system to settle down.

So take it easy for now!

Cheers

Caroline

Iannuzzi wrote: