Re: New Here (v. long msg)

October 17, 2002

Clair -

Forgot to mention that if you do have a good internal med doctor, they can

treat for Grave's (good being the operative word). My current doc is

internal med. He was competent initially, but I've gone beyond his expertise

now. They won't do surgery, though. You want a surgeon who specializes in

thyroid surgeries. There's a list of questions to ask a surgeon around the

board somewhere, I'm sure someone can tell exactly where.

Re: Re: New Here (v. long msg)

> Clair Baca wrote:

> >

> > And the sad thing is that when I was in college I just did whatever

> > the doctor said and did no research of my own. So now I feel like I

> > am dealing with this for the first time.

>

> I never got a diagnosis at college (alas), but after a few years

> on Carbimazole (like Tap), a subtotal thyroidectomy with 6 drug

> free years afterwards, I relapsed, and the second time was

> harder.

>

> So I can relate to this, I had a great GP, and great endo first

> time around, I didn't need to know anything. They have both

> retired, I've moved away.... hohum.

>

> > Is a doctor of internal medicine as capable of treating Graves as an

> > endocrinologist. My old PCP is an int. med. doctor, not an endo.

>

> A doctors capabilities don't come with bits of paper. If he

> knows his thyroids he'll do.

>

> > Can an internal med doctor perform surgery for Graves?

>

> Not sure what an " internal med doctor " equates to exactly, but I

> think major surgeries are still done by surgeons over there.

> Here thyroid surgery is either part of " general surgery " , or a

> specialist thyroid or throat surgeon will perform a

> thyroidectomy.

>

> " General Surgery " shouldn't be taken to mean that the surgeon is

> specifically trained for thyroid operations, it is just the

> department that pays him.

>

> Typically you consult with the surgeon before he will accept you

> for surgery, sometimes they will recommend against surgery, but

> that is usually in the infirm, or those with unusual

> complications.

>

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

> 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.

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

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

>

October 17, 2002

Clair -

Forgot to mention that if you do have a good internal med doctor, they can

treat for Grave's (good being the operative word). My current doc is

internal med. He was competent initially, but I've gone beyond his expertise

now. They won't do surgery, though. You want a surgeon who specializes in

thyroid surgeries. There's a list of questions to ask a surgeon around the

board somewhere, I'm sure someone can tell exactly where.

Re: Re: New Here (v. long msg)

> Clair Baca wrote:

> >

> > And the sad thing is that when I was in college I just did whatever

> > the doctor said and did no research of my own. So now I feel like I

> > am dealing with this for the first time.

>

> I never got a diagnosis at college (alas), but after a few years

> on Carbimazole (like Tap), a subtotal thyroidectomy with 6 drug

> free years afterwards, I relapsed, and the second time was

> harder.

>

> So I can relate to this, I had a great GP, and great endo first

> time around, I didn't need to know anything. They have both

> retired, I've moved away.... hohum.

>

> > Is a doctor of internal medicine as capable of treating Graves as an

> > endocrinologist. My old PCP is an int. med. doctor, not an endo.

>

> A doctors capabilities don't come with bits of paper. If he

> knows his thyroids he'll do.

>

> > Can an internal med doctor perform surgery for Graves?

>

> Not sure what an " internal med doctor " equates to exactly, but I

> think major surgeries are still done by surgeons over there.

> Here thyroid surgery is either part of " general surgery " , or a

> specialist thyroid or throat surgeon will perform a

> thyroidectomy.

>

> " General Surgery " shouldn't be taken to mean that the surgeon is

> specifically trained for thyroid operations, it is just the

> department that pays him.

>

> Typically you consult with the surgeon before he will accept you

> for surgery, sometimes they will recommend against surgery, but

> that is usually in the infirm, or those with unusual

> complications.

>

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

> 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.

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

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

>

October 17, 2002

Clair -

Forgot to mention that if you do have a good internal med doctor, they can

treat for Grave's (good being the operative word). My current doc is

internal med. He was competent initially, but I've gone beyond his expertise

now. They won't do surgery, though. You want a surgeon who specializes in

thyroid surgeries. There's a list of questions to ask a surgeon around the

board somewhere, I'm sure someone can tell exactly where.

Re: Re: New Here (v. long msg)

> Clair Baca wrote:

> >

> > And the sad thing is that when I was in college I just did whatever

> > the doctor said and did no research of my own. So now I feel like I

> > am dealing with this for the first time.

>

> I never got a diagnosis at college (alas), but after a few years

> on Carbimazole (like Tap), a subtotal thyroidectomy with 6 drug

> free years afterwards, I relapsed, and the second time was

> harder.

>

> So I can relate to this, I had a great GP, and great endo first

> time around, I didn't need to know anything. They have both

> retired, I've moved away.... hohum.

>

> > Is a doctor of internal medicine as capable of treating Graves as an

> > endocrinologist. My old PCP is an int. med. doctor, not an endo.

>

> A doctors capabilities don't come with bits of paper. If he

> knows his thyroids he'll do.

>

> > Can an internal med doctor perform surgery for Graves?

>

> Not sure what an " internal med doctor " equates to exactly, but I

> think major surgeries are still done by surgeons over there.

> Here thyroid surgery is either part of " general surgery " , or a

> specialist thyroid or throat surgeon will perform a

> thyroidectomy.

>

> " General Surgery " shouldn't be taken to mean that the surgeon is

> specifically trained for thyroid operations, it is just the

> department that pays him.

>

> Typically you consult with the surgeon before he will accept you

> for surgery, sometimes they will recommend against surgery, but

> that is usually in the infirm, or those with unusual

> complications.

>

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

> 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.

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

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

>

October 17, 2002

Clair Baca wrote:

>

> I don't know what it is about RAI

> that scares me, but it just does.

I think for most it is a fear of the unknown, as most of us have

minimal knowledge of radiation exposure or risks.

As you find out more hopefully you'll replace that with a

healthy scepticism based on the evidence, which isn't clearly in

favour of RAI despite what many US doctors seem too believe, and

a consideration of other treatment options, and comparison with

places like Europe, where treatment is much more diverse.

> So, Simon, are you from the UK?

Yes, Devon.

> My father and his wife and my young

> sister (7) and brother (3) are over there. My step-mom was hyper and

> had her thyroid removed quite a few years ago...

Curious most people here have blood relatives with thyroid

problems, you have " step " relations.... Or maybe it is something

to do with your dads tastes.

October 17, 2002

Thanks . My doctor is an excellent internal med doctor. And

he is sweet and kind and understanding and gentle, too. So it looks

like we have a winner. I just don't want to waste time waiting for

my medical group to decide whether or not to accept me, waiting to

see the doctor again, waiting for a referral to the endo... All with

the possibility of me hating the endo. I am very picky about my

doctors these days and won't see any old schmo. I only switched med

groups to see my RE when my former med group went bankrupt quite

suddenly. But seeing an RE is a non-issue right now since I have to

get this fixed first. And now my insurance has told me that since my

internal med doctor has no RE on any of his med groups while I have

infertility coverage, my insurance company will assign someone to

me. Once I get that in writing, I will go back to my old internal

med doctor. He can be seen as a PCP so we won't have to waste time

with referrals and because he & his staff are close to my mom, I

don't wait for appointments either. And he happens to be who treated

me for Graves last time.

Thanks for the info. I'm sure if we go with surgery he will

recommend someone good and likely be there to assist as he tends to

do that with my mom.

Thanks again! I almost feel hopeful...

Clair

> > >

> > > And the sad thing is that when I was in college I just did

whatever

> > > the doctor said and did no research of my own. So now I feel

like I

> > > am dealing with this for the first time.

> >

> > I never got a diagnosis at college (alas), but after a few years

> > on Carbimazole (like Tap), a subtotal thyroidectomy with 6 drug

> > free years afterwards, I relapsed, and the second time was

> > harder.

> >

> > So I can relate to this, I had a great GP, and great endo first

> > time around, I didn't need to know anything. They have both

> > retired, I've moved away.... hohum.

> >

> > > Is a doctor of internal medicine as capable of treating Graves

as an

> > > endocrinologist. My old PCP is an int. med. doctor, not an

endo.

> >

> > A doctors capabilities don't come with bits of paper. If he

> > knows his thyroids he'll do.

> >

> > > Can an internal med doctor perform surgery for Graves?

> >

> > Not sure what an " internal med doctor " equates to exactly, but I

> > think major surgeries are still done by surgeons over there.

> > Here thyroid surgery is either part of " general surgery " , or a

> > specialist thyroid or throat surgeon will perform a

> > thyroidectomy.

> >

> > " General Surgery " shouldn't be taken to mean that the surgeon is

> > specifically trained for thyroid operations, it is just the

> > department that pays him.

> >

> > Typically you consult with the surgeon before he will accept you

> > for surgery, sometimes they will recommend against surgery, but

> > that is usually in the infirm, or those with unusual

> > complications.

> >

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

> > 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.

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

--------

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

> >

October 17, 2002

OOPS!! Somehow I read the name of your daughter wrong in your post, so

sorry!

That overwhelmed, can't deal feeling is part of the disease too! Sort of

complicates things even more. My MIL had her thyroid killed by RAI quite

some time ago. She felt better for the first 3 months and then progressively

felt worse and worse as time went on. She has been plagued by numerous

health problems since. It's been over 20 years for her and she honestly

can't say she's happy with the decision now.

I really hope you can get in with your old doctor and get on some PTU, PDQ!

Once you are feeling better physically and emotionally then getting pregnant

will probably be easier. Here's hoping your future will be brighter sooner!

in MA, USA

Diagnosed w/Graves, 03/1997

So far refusing RAI Treatment and Surgery!!!

Remission from 06/2000 to 07/2002, suspected " hyper " again.

Currently not taking any meds.

October 17, 2002

Thank you for your encouragment Fay. My in laws lost their first 2

babies... The first was stillborn at 7 months and the 2nd died when

he was 3 weeks old from a heart defect. They are wonderful and help

us cope so much better. And they give us hope... Out of their

struggle came my husband, a blessing to them and my life's greatest

joy.

I know I'm young. I struggle with that a lot. It seems some doctors

want to dismiss me and my infertility because I am young. Thankfully

some have had the foresight to treat me like a real person no matter

my youth. I know I have time. I really do. But sometimes having

time is little solace when you are ready for something now,

especially something as important as a child. I do not mind you

pointing that out. My mom likes to point it out to me all the time

and I adore her =) And yes, I have acheived pregnancy twice... And

once I even carried to term. I do feel some relief at that. My

pregnancy with Riley was uneventful and pleasant. And even if I

never get pregnant again, I will always be grateful for having had

the experience despite the result. But I do so much want a baby.

When I sleep at night I close my eyes and imagine my life down the

road, busy with my family, almost forgetting the struggle we went

through to get there... well, never forgetting Riley. Just the pain.

Anyway, thank you for the information. I am so glad I came here. I

was close to being talked into RAI when emailed me and pointed

me in the right direction =)

Thank you again for the information.

Clair

> Welcome!

>

> Wow. There is so much food for thought in your message. First of

all,

> don't worry about your sue-happy rep. You did a valuable service for

> everyone and may very well have saved some lives. I can't begin to

feel

> your pain. I had a great uncle and aunt who had their first

pregnancy

> after 20 years of marriage (this was 50 years ago) and a nurse gave

my

> aunt something in labor that was supposed to hurry things along but

> instead resulted in a stillbirth. They had two children almost

> immediately afterward, over a dozen grandchildren, and lived to see

some

> of their great grandchildren. I only heard about this after my aunt

died.

> I can't begin to imagine her pain in the interim years.

>

> While not too many people here will advocate RAI I would definitely

avoid

> it in your case, even though it seems to allow you to get the ball

> rolling sooner. As Elaine has pointed out, there is a decent chance

that

> your infertility problems are thyroid related. RAI will just

complicate

> things by inducing hypothyroidism and possibly secondary

infertility.

>

> Surgery might likely render you hypo too but the hypo after surgery

is

> easier to treat which means you would become stable and able to

start

> trying sooner. You will also avoid the numerous side effects of RAI

> (increased chance of thyroid eye disease and much much more) as

well as

> have an easier time with your weight. As for surgery you probably

want to

> find an ear-nose-throat doctor who's had lots of experience with

thyroid

> and neck surgery.

>

> Pardon any platitudes but do remember this: time is on your side at

this

> point and you do know that you can become pregnant and sustain a

> pregnancy. (I hesitated to say this but a friend of mine who now

has 6

> children said this to me about herself about 15 years ago after 2

> miscarriages and a stillbirth soon after she got married. If she

found

> that an encouraging thought I hope you will too.) Hopefully this

will be

> true for you in the future.

>

> Take care, 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/web/.

October 17, 2002

Thanks for the info. My doctor more than sufficed last time I went

through this and actually brought me to remission. He is internal

med. I think I will try him first. I am not dealing with anything

but the Graves right now. Hoever, it is my intention to get pregnant

as soon as possible at which time I will also be under the care of my

reproductive endocrinologist... I see the big " e " word in his title,

but don't know what it means since he says he can't treat graves...

Clair

> > Clair,

> > I am sure you are going to get this from 50

> > different people, but endos are the only ones

> > qualified to treat Graves' and not even all of

> > them understand it. Most endos treat diabetes

> > primarily, and of the endos that DO treat thyroid

> > problems, they don't know so much about

> > hyperthyroid problems as they do about

> > hypothyroid. You have to call the office and

> > quiz them, or go to about.thyroid.com and look at

> > the endo list, to see if you can get one who will

> > be on the ball. You have to do a little research

> > just to find a decent doctor! I found mine by

> > doint a Google search, typing in Thyroid doctors

> > and the name of my metro area.

> > Kit

October 17, 2002

Thanks for the info. My doctor more than sufficed last time I went

through this and actually brought me to remission. He is internal

med. I think I will try him first. I am not dealing with anything

but the Graves right now. Hoever, it is my intention to get pregnant

as soon as possible at which time I will also be under the care of my

reproductive endocrinologist... I see the big " e " word in his title,

but don't know what it means since he says he can't treat graves...

Clair

> > Clair,

> > I am sure you are going to get this from 50

> > different people, but endos are the only ones

> > qualified to treat Graves' and not even all of

> > them understand it. Most endos treat diabetes

> > primarily, and of the endos that DO treat thyroid

> > problems, they don't know so much about

> > hyperthyroid problems as they do about

> > hypothyroid. You have to call the office and

> > quiz them, or go to about.thyroid.com and look at

> > the endo list, to see if you can get one who will

> > be on the ball. You have to do a little research

> > just to find a decent doctor! I found mine by

> > doint a Google search, typing in Thyroid doctors

> > and the name of my metro area.

> > Kit

October 17, 2002

Thanks for the info. My doctor more than sufficed last time I went

through this and actually brought me to remission. He is internal

med. I think I will try him first. I am not dealing with anything

but the Graves right now. Hoever, it is my intention to get pregnant

as soon as possible at which time I will also be under the care of my

reproductive endocrinologist... I see the big " e " word in his title,

but don't know what it means since he says he can't treat graves...

Clair

> > Clair,

> > I am sure you are going to get this from 50

> > different people, but endos are the only ones

> > qualified to treat Graves' and not even all of

> > them understand it. Most endos treat diabetes

> > primarily, and of the endos that DO treat thyroid

> > problems, they don't know so much about

> > hyperthyroid problems as they do about

> > hypothyroid. You have to call the office and

> > quiz them, or go to about.thyroid.com and look at

> > the endo list, to see if you can get one who will

> > be on the ball. You have to do a little research

> > just to find a decent doctor! I found mine by

> > doint a Google search, typing in Thyroid doctors

> > and the name of my metro area.

> > Kit

October 17, 2002

" I don't know which state you live in Claire, but when we lived in Souther

CA at the time of Molly's death we were fortunate to have a support group

called the Empty Cradle. Their motto was " To ease the pain of and empty

heart and the ache of an empty cradle " . This group literally saved my life

and really helped my marriage to become stronger and helped my husband to

learn to deal with the grief he was so afraid to show because he felt he had

to be 'strong' for me. If you have any group like that, that deals with

newborn death, stillbirths and neonatal deaths, contact someone from there. "

There is an online groups, S.P.A.L.S. (subsequent pregnancy after loss

support) that is absolutely wonderful!! They originated in Canada but I

think they're a Yahoo group now. Look them up as SPALS and see what you

find.

in MA, USA

Diagnosed w/Graves, 03/1997

So far refusing RAI Treatment and Surgery!!!

Remission from 06/2000 to 07/2002, suspected " hyper " again.

Currently not taking any meds.

October 17, 2002

>>>You are right... I am stressed beyond the limit. First, losing Riley was,

as you said, the most difficult thing I could ever imagine. I still can't

make it more than a week without missing her so much and being so shocked by

her absence that I crumble in tears.<<<

>>Do you do anything on Riley's birthday? For me, every June 7th is 'my'

day, to think about her, talk to her, remember and celebrate her very short

time on this earth. I celebrated every month that I carried her, I KNEW her

for 7 ½ months the way no one else could have known her.<<

I haven't done it in a couple of years but I used to donate to a children's

hospital every year in memory of my son on his birthday. Another woman I

knew " sponsored " an underpriviledged child in another country. She sponsored

a child who was the same sex as her baby and shared the same birthdate.

Okay, that's it for now.

in MA, USA

Diagnosed w/Graves, 03/1997

So far refusing RAI Treatment and Surgery!!!

Remission from 06/2000 to 07/2002, suspected " hyper " again.

Currently not taking any meds.

October 17, 2002

Hi Clair,

Welcome to the group. It seems to me that the stress your body has been

through, and your mind as well, could be causing your reversion to hyper.

Many of us had overt symptoms occur after a death in the family--for me, it

was my father. Having it be your baby must be like the difference between a

5 and an 8 earthquake in intensity (since you're a CA girl--I'm up north,

and today it's the anniversary of the '89 quake here in the bay area).

I would suggest one alternative route for you, which is to get on PTU,

follow your labs very closely--I notice you didn't do that last time, so do

share them here as well--and see a good Chinese medicine doctor, an

herbalist/acupuncturist--but with the emphasis on the herbal medicine part--

for the infertility problems. My husband is in that practice, and has helped

many, many women who had problems conceiving, just with herbal treatment.

It's painless, not nearly as expensive or stressful or clinical as the

medical path, and I have personally seen it work many times. The added

advantage is that the Chinese herbal remedies treat the whole person, so you

will also get some help with the hyper symptoms, etc.

Just be sure you get someone who knows their herbal medicine--about 30% of

the acupuncturists are good herbalists, the rest aren't interested in that

aspect.

My two cents, for what it's worth.

Terry

>

> Reply-To: graves_support

> Date: Thu, 17 Oct 2002 18:33:42 -0000

> To: graves_support

> Subject: Re: New Here (v. long msg)

>

> Thank you for the information, . I will ask my doctor about

> surgery and meds, but want to avoid RAI.

>

> It gives me hope when people are able to get past this and get

> pregnant. But since we've already been trying for 19 months not

> counting this month, I am impatient to say the least.... Whatever's

> quickest and whatever has the least potential for long term

> problems...

>

> Thanks again. Everyone here has been so wonderful.

>

> Clair

>

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

> 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.

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

> --------

>

October 17, 2002

Jody,

I was so sad to read of the loss of your daughter Molly. So sad! I was 33

weeks when ym son was stillborn, right about the same point you were at

too.

in MA, USA

Diagnosed w/Graves, 03/1997

So far refusing RAI Treatment and Surgery!!!

Remission from 06/2000 to 07/2002, suspected " hyper " again.

Currently not taking any meds.

October 17, 2002

Jody... Thank you so much for taking so much time to address my

issues. I am sorry to hear about your daughter. Even after all

these years I know it's hard. My in laws lost their first two... one

at 7 mos. gestation and one when he was 3 weeks old. The oldest

would be 33 this year and would be 32. They still grieve.

As for us, yes, we did hold Riley. And thank God. I came incredibly

close to not holding her... didn't think I could bear it. When I was

awake during my labor (epi before induction) I couldn't even touch my

belly knowing there would be no movement. But we'd had a new doctor

come in and he was amazing and refused to leave the hospital until I

held her. And those moments with her were the most beautiful moments

of my life. My husband and I even managed to smile through our tears

as we inspected every inch of her (which mostly looked like him).

And we do have a picture of her. I asked to not have any. But a

wise nurse took a polaroid and put it in a sealed envelope and told

me I never had to look if I didn't want to, but if I wanted to, I had

it. And thank God for her, too.

and I are also in SoCal. We went to a support meeting once but

did not take to it. Every now and then we go to events (like the

candle lighting ceremony they have at the beach). After 18 months I

finally consented to go to therapy though... How on earth did I live

without it. I was afraid they'd stick me on antidepressants and I

didn't want that because I felt entitled to my grief. My therapist

is amazing though.

What I did do was find a internet support group. I liked the close,

yet distant nature of it rather than baring my soul to strangers face

to face. I have made some lifelong friends there. Through the

support group I became more familiar with the issues going on

concerning pregnancy loss. Right now I am the Director for the State

of California for the National Stillbirth Society. One of our main

efforts is to get a Certificate of Birth Resulting in Stillbirth.

Currently stillborn babies do not get a birth certificate of any

kind. They get a fetal death certificate which does not record their

name or vital stats. 4 states have introduced this law now. We also

work very hard to spark research. None exists. Most of the time

stillbirth is as mysterious as SIDS once was... 60% of stillbirths

show no cause for the baby's death.

What you say about stillbirth versus miscarriage is true. I've

experienced both and there is a difference between the two. A big

difference. A stillbirth is any birth after 20 weeks gestation by

medical definition. Anything before that is a miscarriage. Every

year almost a million women miscarry in America. 26,000 have

stillborn babies. I do acknowledge my miscarriage, but I held Riley

in my arms. There is something different about that... But I promise

not to bite any heads off =) I am a little into my work =)

As for Riley's birthday, well, we've only had 1, but we have her 2nd

approaching quickly. Last year we sent out cards one of my friends

(who I met in my internet support group) made commemorating her

birth. They had the quote by Nietzsche that I love... " One must

still have chaos in oneself to be able to give birth to a dancing

star. " And then on the inside it said Clair & commemorate the

first anniversary of the birth and death of their beloved child Riley

Simone Baca.... I loved those cards and the idea of everyone we knew

stopping to find them in their mail and thinking of Riley. This year

I am thinking of making cd's with one of the songs from

Winston's cd " December " and sending those out. When I heard that cd,

I cried. It just reminded me of her so much... He's a pianist and I

guess the soft pretty sounds of the piano remind me of her as does

anything to do with December. Coincidentally she was born on 12/14.

My husband is 12/15 and my father-in-law is 12/16.... December is my

favorite month and the one that also hurts the most. Anyway, I

digress... yes, we do things. Whatever feels right... Last year on

the actual day we visited our nurse. It happened to be the first

rainfall of the season and it didn't just rain, it poured. We find

that there is always at least a little sprinkle on all days of

significance for us.

Anyway, on to graves... I have pretty much decided to not do RAI. I

will definitely try meds first. And before I visit my doctor, of

course I will be here asking for everything but the sun... Surgery is

an option that I will also keep in mind should there be a problem

with meds.

I know my health is most important. My husband keeps telling me

that... he just wants me to be better. And I want to be better. I

can't wait to feel good. But I can't wait for other things too. And

when you focus solely on pregnancy for, well, almost 3 years now,

it's hard to let go and walk away from it. Where does my focus go

now? I guess to this disease. And since I'm so paranoid about

weight gain, I guess I could hit the gym. My husband had knee

surgery a few months ago and I was waiting for him. But a few yoga

classes on my own can't hurt =)

About my RE... Well, he did seem to abruptly dismiss a lot of things

and leaned right in to RAI. And my DH's cousin and his wife had bed-

side manner problems with him several years ago (ended up with

another RE and are now 20wks pg with twins!!). But and I liked

him. Maybe a new medical group and a new RE would do me some good.

Either way, I am going back to Dr.#1 who treated me last time. I

trust him most and he is willing to learn about this.

Anyway, I've rambled on for long enough. Thank you for your support

both with graves and with my loss. Can't wait to get to know

everyone better. I am including a link to Riley's web site if you

are interested.

Clair

http://RileySimone.hypermart.net

October 17, 2002

Thanks for that info Terry. I did take some various herbs before I

went the Clomid route. But they were from my own research. I know

exactly where a good place is for this so I need to check it out.

Oh yeah, and it looks like we are cross-state rivals for the upcoming

WS. Not that I watch baseball... but heck, when you're winning =)

My husband also pointed out that the last time the Giant played the

WS, there was quite a quake... Let's hope that doesn't happen again!

Thanks again for the info. I will surely be asking you more

questions and trying to gather your husband's expertise... =P

Clair

> Hi Clair,

>

> Welcome to the group. It seems to me that the stress your body has

been

> through, and your mind as well, could be causing your reversion to

hyper.

> Many of us had overt symptoms occur after a death in the family--

for me, it

> was my father. Having it be your baby must be like the difference

between a

> 5 and an 8 earthquake in intensity (since you're a CA girl--I'm up

north,

> and today it's the anniversary of the '89 quake here in the bay

area).

>

> I would suggest one alternative route for you, which is to get on

PTU,

> follow your labs very closely--I notice you didn't do that last

time, so do

> share them here as well--and see a good Chinese medicine doctor, an

> herbalist/acupuncturist--but with the emphasis on the herbal

medicine part--

> for the infertility problems. My husband is in that practice, and

has helped

> many, many women who had problems conceiving, just with herbal

treatment.

> It's painless, not nearly as expensive or stressful or clinical as

the

> medical path, and I have personally seen it work many times. The

added

> advantage is that the Chinese herbal remedies treat the whole

person, so you

> will also get some help with the hyper symptoms, etc.

>

> Just be sure you get someone who knows their herbal medicine--about

30% of

> the acupuncturists are good herbalists, the rest aren't interested

in that

> aspect.

>

> My two cents, for what it's worth.

>

> Terry

>

> > From: " Clair Baca "

> > Reply-To: graves_support@y...

> > Date: Thu, 17 Oct 2002 18:33:42 -0000

> > To: graves_support@y...

> > Subject: Re: New Here (v. long msg)

> >

> > Thank you for the information, . I will ask my doctor

about

> > surgery and meds, but want to avoid RAI.

> >

> > It gives me hope when people are able to get past this and get

> > pregnant. But since we've already been trying for 19 months not

> > counting this month, I am impatient to say the least....

Whatever's

> > quickest and whatever has the least potential for long term

> > problems...

> >

> > Thanks again. Everyone here has been so wonderful.

> >

> > Clair

> >

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

> > 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.

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

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

> > --------

> >

October 17, 2002

Hi Clair -

Just wanted to welcome you to the group. You are a strong and

courageous woman, and I pray you will find the right doctor to

help you through this. Listen to Jody and get your levels stabilized,

because that is the key to your health and being able to conceive.

You have found a warm and loving family in this wonderful group of

people. You will find the guidance you need.

Best Wishes,

Chris

----------

> > > Clair,

> > > I am sure you are going to get this from 50

> > > different people, but endos are the only ones

> > > qualified to treat Graves' and not even all of

> > > them understand it. Most endos treat diabetes

> > > primarily, and of the endos that DO treat thyroid

> > > problems, they don't know so much about

> > > hyperthyroid problems as they do about

> > > hypothyroid. You have to call the office and

> > > quiz them, or go to about.thyroid.com and look at

> > > the endo list, to see if you can get one who will

> > > be on the ball. You have to do a little research

> > > just to find a decent doctor! I found mine by

> > > doint a Google search, typing in Thyroid doctors

> > > and the name of my metro area.

> > > Kit

October 17, 2002

Hi Clair -

Just wanted to welcome you to the group. You are a strong and

courageous woman, and I pray you will find the right doctor to

help you through this. Listen to Jody and get your levels stabilized,

because that is the key to your health and being able to conceive.

You have found a warm and loving family in this wonderful group of

people. You will find the guidance you need.

Best Wishes,

Chris

----------

> > > Clair,

> > > I am sure you are going to get this from 50

> > > different people, but endos are the only ones

> > > qualified to treat Graves' and not even all of

> > > them understand it. Most endos treat diabetes

> > > primarily, and of the endos that DO treat thyroid

> > > problems, they don't know so much about

> > > hyperthyroid problems as they do about

> > > hypothyroid. You have to call the office and

> > > quiz them, or go to about.thyroid.com and look at

> > > the endo list, to see if you can get one who will

> > > be on the ball. You have to do a little research

> > > just to find a decent doctor! I found mine by

> > > doint a Google search, typing in Thyroid doctors

> > > and the name of my metro area.

> > > Kit

October 17, 2002

Hi Clair -

Just wanted to welcome you to the group. You are a strong and

courageous woman, and I pray you will find the right doctor to

help you through this. Listen to Jody and get your levels stabilized,

because that is the key to your health and being able to conceive.

You have found a warm and loving family in this wonderful group of

people. You will find the guidance you need.

Best Wishes,

Chris

----------

> > > Clair,

> > > I am sure you are going to get this from 50

> > > different people, but endos are the only ones

> > > qualified to treat Graves' and not even all of

> > > them understand it. Most endos treat diabetes

> > > primarily, and of the endos that DO treat thyroid

> > > problems, they don't know so much about

> > > hyperthyroid problems as they do about

> > > hypothyroid. You have to call the office and

> > > quiz them, or go to about.thyroid.com and look at

> > > the endo list, to see if you can get one who will

> > > be on the ball. You have to do a little research

> > > just to find a decent doctor! I found mine by

> > > doint a Google search, typing in Thyroid doctors

> > > and the name of my metro area.

> > > Kit

October 17, 2002

Hi Clair-

I am so sorry for your loss. I know you'll never stop thinking about the

loss of your daughter (who would want to) but I hope it gets more tolerable

as time goes by.

It sounds like you might have several things going on at one time and, like

you, I always had to deal with the frustration of dealing with doctors who

tell me that there's not really any reason for my infertility. It turned

out that not only had I been kept hypothyroid after RAI for years and had

PCOS (which is thought to be autoimmune in nature and some studies suggest

thyroid related-they eventually fixed that and I started ovulating), I also

had an immune reaction to pregnancy. Probably, I had conceived many many

times but had an immune reaction to implantation. I also had a miscarriage

last year.

Anyhow, I'm now pregnant with twins after my 2nd IVF cycle (I was

approaching 40 so I didn't feel we had much choice) and what made this one

different from my failed IVF is that I became very aggressive about

demanding that they treat immune issues after I read the pathology report

from my son's birth (he's almost 7-it took 3 years to get pregnant with

him). I had an immune reaction to the chorionic villi that supplies blood

to the placenta (which sounds like the same problem had-we almost lost

him at birth). It worked! And, after 4 years of trying this time, we're 6

months pregnant with twins.

Secondary infertility is often related to immune problems (Graves' disease

is an autoimmune disease). Since you're in Southern California, Dr.

Wilcox (an RE) at the Huntington Reproductive Center in Pasadena comes

highly recommended. I know they take a lot of insurance plans. Their

website is at www.havingbabies.com. We had an appt. with Dr. Wilcox in June

when we found out that we were already pregnant. Another site that I found

immensely helpful is at www.inciid.org.

If I had it to do over again, I would have stayed on PTU rather than having

RAI. That just added another problem into the mix because it's been

impossible for them to regulate my thyroid meds.

I know this post is terribly choppy but it would take forever to write

everything we've learned and been through. We would have initially gone to

Dr. Wilcox if we had it to do over again but we live in Fresno (so didn't

want to travel so far) and kept thinking that the next cycle would work.

You're welcome to write me privately at jutek@... where I could go into

more detail.

Take care,

dx & RAI 1987 (at age 24)

> Hello everyone. This is my first time posting here so I'd like to

> introduce myself and give you some background. This is going to be

> one long post so please bear with me...

>

> First of all, my name is Clair and I am 26. I live in Southern

> California with my husband, and our orange tabby, Baltimore and

> our Italian Greyhound, Capone.

>

> I was first diagnosed with Graves in early 1995 during my freshman

> year in college. I was having frequent headaches so I went to the

> doctor. In addition to that I was extremely fatigued and I lost a

> considerable amount of weight. I would fall asleep in my first class

> from utter exhaustion after a full night's sleep... And at 5'10 " I

> went from a healthy 135 to about 105. I chalked it all up to the

> stress of working full time and having a double major in my first

> year of college. But the headaches prompted me to go see a

> specialist. He did tests and found I was hyperthyroid so I went back

> to my family doctor, who is also a doctor of internal medicine.

>

> My family doctor initially put me on Tapazole while he did some

> research. The Tapazole was working and I felt better. Then he tried

> something new... He put me on a higher dose of Tapazole to make me

> hypo. Then he gave me a high dose of Synthroid to bring me back to

> normal. And then I maintained a smaller daily dose of Tapazole and

> Synthroid together for about 18 months. At that time I stopped all

> meds and was officially in remission. My doctor felt that stress had

> triggered my disease.

>

> In early 2000 I unexpectedly became pregnant. My pregnancy was very

> normal and my husband and I waited in anticipation for the birth of

> our daughter. But things went wrong and in December 2000 Riley

> Simone was stillborn in my 43rd week of pregnancy due to a post-date

> pregnancy and a negligent doctor, who we have successfully sued.

>

> In February 2001 my husband and I decided to try to have a baby

> again. I had my thyroid checked and my levels were normal, but a

> little on the higher side of normal. In February 2002 I had a

> miscarriage at 5 weeks. At this point we went to see a Reproductive

> Endocrinologist for help conceiving. He could find nothing wrong

> with us and diagnosed us with unexplained secondary infertility. We

> did 2 rounds of Clomid (to produce more eggs, though I was already

> ovulating on my own) with IUI (intrauterine insemination) with rounds

> of birth control between each cycle to get rid of the ovarian cysts

> Clomid caused me to have. We had no luck.

>

> Then, at the end of our 2nd IUI our RE went on vacation so we had our

> first natural cycle (ie, no Clomid or birth control) in 7 months.

> When my doctor came back from vacation we were told our medical group

> had not paid him for services in months. So in order to keep seeing

> him we made the difficult decision to leave my family doctor and go

> to a new PCP in a medical group my RE was contracted through. So we

> found a doctor and went to see him to ask for a referral. That was

> 10/3. He did a routine exam and noticed my thyroid was swollen. And

> I had not started my period yet and I was about 2 weeks late. So he

> also did a pregnancy test. The pregnancy test was negative, but the

> thyroid test showed elevated levels.

>

> I thought maybe I could see my RE for treatment since he was

> an " endocrinologist. " But when I went to see him he told me he could

> not treat me for this because it is more serious and he only deals

> with hypo. He also told me that my levels were high, but were not

> too bad at all. And then he went over treatment options he knew of.

>

> See, initially I thought that this might be the reason for our

> infertility. And my PCP mentioned it as well. So I was Ok with it.

> But my RE told me since I was ovulating, it was not the reason. But

> he admitted this was not his area, so I am hoping he was wrong and

> that this is our reason. But then he told me I could not take

> Tapazole and be pregnant, I was devastated. I assumed that's what

> I'd do. Last time it took over 2 years to regulate me into

> remission. I cannot wait 2 years or more to try to conceive again.

>

> And then there's RAI. I hate the thought of it. Why be sick in a

> whole new way. And the words " radio active " get to me. But this is

> quicker and I could try to conceive again in 6 months. But then I

> think about the people I know who are hypo and the weight gain... I

> know it's shallow, but it matters to me. And then there's surgery....

>

> I feel like all treatment options suck. I think that were we not so

> desperate to conceive, I would likely turn to meds again. But then I

> think of the potential for the disease to come back again and I get

> so tired. 5 years of remission is not that long in the grand scheme

> of things. But I don't want to be hypo either.

>

> So here I am. I am dealing with insurance issues once again so I do

> not know which doctor I am seeing. But I have a POS, so I am going

> to call my family doctor who treated me last time and see him to see

> what he thinks. The most important thing to me is getting pregnant.

> I want to do whatever will make that possible soonest. I hate this

> disease and if I could go on and get pregnant and not harm my baby, I

> would say screw it and deal with the shaky hands and the weak muscles

> and the headaches and the anxiety and heart palpitations and the

> weight loss (well heck, the weight loss isn't so bad =P)... But I

> know my health is in danger so I am forced to treat it...

>

> I guess I am looking for advice, success stories, others who have

> conceived with this and any information about infertility and Graves

> (by the way, my period has been delayed from ovarian cysts from my

> last round of Clomid, not from my graves). I need support. I am so

> depressed. This is the worst I have been in a long time... And all I

> keep thinking is that had I not lost my little girl, I wouldn't be

> here....

>

> Thanks for listening.

October 17, 2002