new to the group

July 6, 2001

Welcome, Beverly! I'd advise you to search the archives here, too --

there's a wealth of information!

B

New to the group

> Hi everyone:

> I was really excited to find this group. I was diagnosed with graves

> in 1996, had rai in 1997. I have had nothing but trouble trying to

> get my thyroid levels correct ever since. I am so tired of

> fluctuating back and forth between hypo and hyper, then having to

> alter my dose accordingly. I too was put on zoloft

> because " depression and mood swings " . I am wondering if it has more

> to do with my thyroid meds than anything else. I would like to know

> if anyone else has had this kind of trouble. I am considering

> switching medications, but i know it will be a battle. My endo leans

> toward one particular med and has been reluctant to change it.

>

> Anyway, any info out there would be appreciated. Take care all and

> hope y to hear your experiences.

>

> Beverly

>

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

> 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.

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

>

July 6, 2001

Hi Beverly,

So glad you found the group. I'll be looking forward to getting

to know you. Maybe we can all help each other a little or a lot!

Best wishes,

karen

> Hi everyone:

> I was really excited to find this group. I was diagnosed with

graves

> in 1996, had rai in 1997. I have had nothing but trouble trying to

> get my thyroid levels correct ever since. I am so tired of

> fluctuating back and forth between hypo and hyper, then having to

> alter my dose accordingly. I too was put on zoloft

> because " depression and mood swings " . I am wondering if it has

more

> to do with my thyroid meds than anything else. I would like to

know

> if anyone else has had this kind of trouble. I am considering

> switching medications, but i know it will be a battle. My endo

leans

> toward one particular med and has been reluctant to change it.

>

> Anyway, any info out there would be appreciated. Take care all and

> hope y to hear your experiences.

>

> Beverly

July 6, 2001

Hi karen:

Thanks for the welcome. I'm really looking forward to being involved

with this group. It's hard to make people understand what it's like to

have a disease like graves. It will be nice to have some people to talk to

that can relate to what is going on with me and REALLY

understand.

Beverly

Re: New to the

group

Hi Beverly,

So glad

you found the group. I'll be looking forward to getting

to know you. Maybe

we can all help each other a little or a lot!

Best

wishes,

karen

Hi everyone:

I was really excited to find this group. I was

diagnosed with

graves

in 1996, had rai in 1997. I have had

nothing but trouble trying to

get my thyroid levels correct ever

since. I am so tired of

fluctuating back and forth between hypo

and hyper, then having to

alter my dose accordingly. I too was

put on zoloft

because " depression and mood swings " . I am

wondering if it has

more

to do with my thyroid meds than anything

else. I would like to

know

if anyone else has had this kind

of trouble. I am considering

switching medications, but i know it

will be a battle. My endo

leans

toward one particular med and

has been reluctant to change it.

Anyway, any info out there

would be appreciated. Take care all and

hope y to hear your

experiences.

Beverly

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

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.

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

July 6, 2001

Hi :

Thanks for the info. I will have to take some time to do that.

It is amazing just how much information is available now. It will take

time to weed through it all. I look forward to getting to know others in

this group also.

Beverly

New to the group

Hi

everyone:

I was really excited to find this group. I was diagnosed

with graves

in 1996, had rai in 1997. I have had nothing but

trouble trying to

get my thyroid levels correct ever since. I am

so tired of

fluctuating back and forth between hypo and hyper, then

having to

alter my dose accordingly. I too was put on

zoloft

because " depression and mood swings " . I am wondering if it

has more

to do with my thyroid meds than anything else. I would

like to know

if anyone else has had this kind of trouble. I am

considering

switching medications, but i know it will be a battle.

My endo leans

toward one particular med and has been reluctant to change

it.

Anyway, any info out there would be appreciated. Take

care all and

hope y to hear your experiences.

Beverly

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

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.

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

July 6, 2001

Hi Beverly=

I've had the same problems as you do and have found it's almost impossible

to get my thyroid levels right. But things aren't as bad as they once were.

My cousin, who had her thyroid removed surgically when she was 15 (she's now

41) was diagnosed with bipolar disorder. Hypothyroidism is tied with

bipolar disorder. Other authors tie bipolar disorder with autoimmune

thyroid disease. " In fact, about half of the patients with rapid cycling

[bipolar disorder] who fail to respond to conventional treatment for bipolar

disorder are hypothyroid (The Thyroid Solution by Ridha Arem, M.D.). "

I had a psychiatrist tell me that people with thyroid disease don't respond

well to SSRIs.

Take care,

> Hi everyone:

> I was really excited to find this group. I was diagnosed with graves

> in 1996, had rai in 1997. I have had nothing but trouble trying to

> get my thyroid levels correct ever since. I am so tired of

> fluctuating back and forth between hypo and hyper, then having to

> alter my dose accordingly. I too was put on zoloft

> because " depression and mood swings " . I am wondering if it has more

> to do with my thyroid meds than anything else. I would like to know

> if anyone else has had this kind of trouble. I am considering

> switching medications, but i know it will be a battle. My endo leans

> toward one particular med and has been reluctant to change it.

>

> Anyway, any info out there would be appreciated. Take care all and

> hope y to hear your experiences.

>

> Beverly

July 7, 2001

Hi Beverly,

Welcome to the group. I think I missed your original message. After RAI, I

was kept hypoT for years while my symptoms were dismissed. I wish I would

have pursued the issue sooner, but finally I'm on an adequate thyroid hormone

dose. There's a lot of good info on hypothyroidism and rapid cycling polar

disease in Werner and Ingbar's the Thyroid, a Fundamental and Clinical Text,

7th edition in the chapter on hypoT. I've included some of this info on my

book on Graves' disease, which is due out in early August.

July 7, 2001

Hi :

You know, I had not heard anything about bipolar and thyroid disease.

It is amazing the things that I am learning already. I don't know a lot

about bipolar, but I will definitely look into it more. I like to get as

much info as possible before I see my endo so I can ask about this stuff.

I just get frustrated because I have talked to others who have graves, had rai,

got their med dosage right off the bat and have been fine ever since. I

keep thinking something is wrong with me. It's good to know I'm not the

only one having difficulty.

Beverly

Re: New to the

group

Hi Beverly=

I've had the same problems as

you do and have found it's almost impossible

to get my thyroid levels

right. But things aren't as bad as they once were.

My cousin, who

had her thyroid removed surgically when she was 15 (she's now

41) was

diagnosed with bipolar disorder. Hypothyroidism is tied with

bipolar

disorder. Other authors tie bipolar disorder with autoimmune

thyroid

disease. " In fact, about half of the patients with rapid

cycling

[bipolar disorder] who fail to respond to conventional treatment for

bipolar

disorder are hypothyroid (The Thyroid Solution by Ridha Arem,

M.D.). "

I had a psychiatrist tell me that people with thyroid disease

don't respond

well to SSRIs.

Take care,

Hi

everyone:

I was really excited to find this group. I was diagnosed

with graves

in 1996, had rai in 1997. I have had nothing but

trouble trying to

get my thyroid levels correct ever since. I am

so tired of

fluctuating back and forth between hypo and hyper, then

having to

alter my dose accordingly. I too was put on

zoloft

because " depression and mood swings " . I am wondering if it

has more

to do with my thyroid meds than anything else. I would

like to know

if anyone else has had this kind of trouble. I am

considering

switching medications, but i know it will be a battle.

My endo leans

toward one particular med and has been reluctant to change

it.

Anyway, any info out there would be appreciated. Take

care all and

hope y to hear your experiences.

Beverly

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

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.

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

July 7, 2001

It's hard to make people understand what it's like to

> have a disease like graves. It will be nice to have some people to

talk to

> that can relate to what is going on with me and REALLY

> understand.

Amen to that, Beverly! I think we all feel that way. Yes, it is hard

to communicate with most people about Graves' because no one knows

much about it. I didn't have a clue when I got diagnosed. I only made

a dent in understanding it because of the very high level of

motivation. Even the doctors aren't motivated to learn much about

it. My doc didn't recognise it for many years although I have many

many classic symptoms. And yes, it is nice, if not great, to find the

understanding that is in this group.

Good luck

August 15, 2001

Hi

Welcome to the group. It sounds like you have a terrible time. I'm not surprised

you have mood swings with the

mismanagement you describe. It is really important you find a endo who will

listen to you, run the appropriate tests

(many of Elaine's posts list them, do a search and have a read), and get you

stablised before reducing the

appointments you have for follow up. There are others in the group that will

reply with suggestions on how to find a

good endo in the USA (i'm in Australia and our system in different).

Keep reading and collecting as much info as you can.

Cheers

Caroline

wrote:

> Hello,

>

> I am new to this group and don't exactly know how it

> all works. I am subscribed to the digest method of

> receiving posts. Does everyone recommend this way of

> reading the posts?

>

> Anyway, I was diagnosed in August 2000 with GD but

> have had Thyroid problems for 5 yrs (diagnosed anyway)

> feels like for ever. I thought I had done a lot of

> research on GD until I came here and had absolutely

> have no idea about some of the things that are being

> discussed!???? RAI, Tap, beta~blockers etc.

>

> I have struggled with Dr's (as I am sure most of you

> have) and have not found one that takes the way I feel

> seriously. The Dr. that diagnosed me, told me

> absolutely nothing, gave me 2 perscriptions to take

> for a yr (Levoxyl and Cytomel) and Glucophage for 6

> months and then return for another appt to retest my

> blood. At this appt.my TSH level was at 23.0. I went

> to make the appt. and she moved her practice to

> another part of the state that is too far for me to

> drive to without any notice. uuughhh!

>

> In March 2001 I started having major problems with

> mood swings, fatigue,heat/cold intolerence (all the

> symptoms all over again only worse) so I decided to

> make an appt with an endocrinologist. After waiting 5

> months for the appt. it is finally here and I go on

> Thursday the 16th.

>

> The most frustrating part of this is that I have to

> start all over with a new Dr and adjusting my meds or

> changing them.!!! Can anyone tell me what is

> absolutely important to expect my Endo Dr to do or

> what to ask specifically because I am honestly

> clueless and all this time I thought I knew something

> about this aweful disease!!

>

> Thx for listening........and sry for rambling!!

>

> (female)

>

> __________________________________________________

>

August 15, 2001

Hi ,

Welcome to the group. Myself, I like receiving the posts as emails. For me,

that's faster than going to the board. You'll have to see what works best for

you.

Were you treated for your GD and made hypothyroid? I suppose you were if your

TSH soared to 23 and you're on both thyroid hormones, T4 and T3.

Finding a doctor skilled at treating thyroid disorders can be a challenge.

One endo I went to for a long time kept me hypothyroid because he relied on a

TSH alone and told me that all GD patients complained about everything after

having RAI. When we moved and I found an internist/allergist who knew lots

about immunology, I was finally tested for thyroid antibodies and treated

properly. Shomon has a list of doctors on her about.com thyroid site

with patient comments. When we moved again, I found a doctor there, actually

a Physician's Assistant at a holistic osteopath's office.

Why don't you tell us what treatment you had and that might help us answer

your questions. Best to you, Elaine

August 15, 2001

Elaine,

GGGRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRr >>>>One endo I went to for a long time

kept me hypothyroid because he relied on a TSH alone and told me that all

GD patients complained about everything after having RAI.<<<<

This is MOST of the drs. attitudes out there!!! We *complain* after

RAI...but obviously they don't listen or give a damn about doing anything

about our complaints...like OUTLAWING RAI!!!!!

TTYL

Jody

_________________________________________________________________

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August 15, 2001

Oh everyone....I am so sorry, that last post was suppose to go private!

Jody

_________________________________________________________________

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October 28, 2003

No,but best of luck and I think you are making right decision. Hugs and

prayers

Nick M

November 21, 2003

Hello All, I have been a lurker on this group for some time and have found

great support and info. I am stage 4 dx 12-2002 with mets to the liver and

lungs. Was on 5fu,leuc,cpt11 12-2002 to 9-2003. Currently on

oxaliplatinum,xeloda,celebrex. Some are interested in the celebrex. I have found

on the MD

website that they believe the celebrex helps to control the hand-foot syndrome

of the xeloda. I am on 2000mgs of xeloda,800mgs celebrex and after completing

my 2nd cycle of oxa,xeloda have not yet had any of the hand-foot syndrome. I

have had no surgery,hoping for reduction in tumor burden. Fortunately I have

been able to continue working full-time thru the last year and forsee being

able to continue for some time. I am currently quite unhappy with my Onc. as he

witholds info from me. I don't currently know the size or # of mets to the

liver and lungs. I am seeing dr. Ardalan at the University of Miami on monday

with

all of my films and records in hand for a 2nd opinion. I was wondering if

anyone in the group has had experience with the University of Miami? I want to

wish everone a happy Thanksgiving and hope that everyone feels better. Dale M.

November 21, 2003

Welcome Dale,

Thanks for the information on the Celebrex. As my husband takes Oxaliplatin

that's a good one for my files.

I am not in your area but I believe Nick and Jane are his AOL is abuelopop.

Maybe you should try contacting him.

Welcome again and God Bless

Narice

November 21, 2003

Narice, Thank you fo rthe reply. Is your husband on Xeloda also? It is the

Xeloda that causes the hand-foot syndrome i believe. Dale M

November 22, 2003

No he has drips of 5FU Leuc. and Oxilaplatin

November 22, 2003

Welcome Dale! Sounds like you are on about the same path as my

husband. He was dx in 9/02 with extensive liver mets (no lung) and

was on CPT-11/5FU/LV through July. He, too, is now on

Oxaliplatin/Xeloda(5000mgs)/Celebrex(800mgs). Glad to hear you're

doing so well and feeling good. Since you've been lurking, you

already know what a great group this is, and how much valuable

information you can gather and share. When we went to MD ,

they said the celebrex not only helps the hand/foot syndrome, but

seemed to boost the effectiveness of the Xeloda as well.

As for the University of Miami, I have no information on that. But I

DEFINITELY believe you should get a second opinion from a top Cancer

Center! That can make such a difference!! It's ridiculous that your

Doctor hasn't told you the number/size/locations of your tumors. But

you know, we had the same problem here and finally asked one of the

Radiologists to take is back and explain what he saw on the CT

Scans. (I work for the Hospital here, so I had some inside

contacts). Otherwise, ours wouldn't have known or passed it on

either ...........he never asked for that info in detail himself. Go

figure!! Best wishes to you and thanks for sharing your story ....it

just may end up helping others. Keep us posted on what you find out.

Donna S.

> Hello All, I have been a lurker on this group for some time and

have found

> great support and info. I am stage 4 dx 12-2002 with mets to the

liver and

> lungs. Was on 5fu,leuc,cpt11 12-2002 to 9-2003. Currently on

> oxaliplatinum,xeloda,celebrex. Some are interested in the celebrex.

I have found on the MD

> website that they believe the celebrex helps to control the hand-

foot syndrome

> of the xeloda. I am on 2000mgs of xeloda,800mgs celebrex and after

completing

> my 2nd cycle of oxa,xeloda have not yet had any of the hand-foot

syndrome. I

> have had no surgery,hoping for reduction in tumor burden.

Fortunately I have

> been able to continue working full-time thru the last year and

forsee being

> able to continue for some time. I am currently quite unhappy with

my Onc. as he

> witholds info from me. I don't currently know the size or # of mets

to the

> liver and lungs. I am seeing dr. Ardalan at the University of Miami

on monday with

> all of my films and records in hand for a 2nd opinion. I was

wondering if

> anyone in the group has had experience with the University of

Miami? I want to

> wish everone a happy Thanksgiving and hope that everyone feels

better. Dale M.

>

January 14, 2004

: There is no single answer to your question. My husband is older,i has

been almost 5 years and we are still fighting. We get through by prayers,by

good days,

by help from lots of people. This is a great site. The 5fU/Captosar(brand for

CPT11)

and LV is standard. You might ask about adding Avastin if it's available. How

are his

vital..Blood Counts..CEA " s My better half had nasuea,vomitting and loose

stools

it cleared up but he had like six months of more or less of what you(he) is

receiving.

He lost hair and brows first time. He got tired..They stoppe,it looked good

than it

came back. hanged game plan and now he is on Oxilaplatin and 5FU/Lv/Avastin.

He has had cat scans,pet scans, MRI's,PSA(prostate cancer screening) x-rays

and blood tests. He complained so much and so vocally he was off completely

from the Day after Thanksgiging to the 30th when he had the same thing. He

has a

battery operated infusion pack. This time he lost very little hair,Brows and

lids intact.

They spread the chemo over a longer time,but same dosage so he had a pretty

faqir holiday.How about seeing if there is a support roup for caregivers in

your area? It's

natural to get depressed sometimes. We pray,people pray for us,now we have a

lot

of people on this board who share their pains,glad tidings,sorrows and joy.

We

all want to live. Recently our guiding light died and left a very deep void.

You have to

stay positive(no faking) you have to believe and you have to have faith in

the team

that treats your husband. You also both need a break now and then. We welcome

you,will hold you in our prayers(unless you are offened by that-so will many

others)

hugs and good thougts. Been there,done that,still learning,never giving up.

Nick & Jane

February 3, 2008

Hi Gerry,

Welcome to the group! My name is Ruth and I have been a type 1 diabetic for

34 years. I just learned something new from you today. I did not know that

Agent Orange caused diabetes along with all the other nasty things it did.

Ruth

From: blind-diabetics

[mailto:blind-diabetics ] On Behalf Of Arnold

Sent: Sunday, February 03, 2008 10:15 AM

To: blind-diabetics

Subject: New to the group

My nameis Capt. Lighthouse aka Gerry and I'am legally blind and

diabetic type 2. Have been diabetic for over 35 years and was exposed

to Agent Orange when I was in Vietnam that caused my diabetes. Have

been legally blind since 2005 and have been active with the Blinded

Veterans Association and hold life membership in the group. I was the

founder of Agent Orange Diabetic Victims a yahoo group and no longer

run the organization. Thank you for offering me membership into the

group and I hope that I can be of some assistance to this group.

February 3, 2008

Thank you Ruth and yes many vietnam veterans suffer from Diabetes due

to Agent Orange Exposure type 2 diabetes. I'am now legally blind

because of my diabetes and Agent Orange

>

> Hi Gerry,

>

> Welcome to the group! My name is Ruth and I have been a type 1

diabetic for

> 34 years. I just learned something new from you today. I did not

know that

> Agent Orange caused diabetes along with all the other nasty things

it did.

>

> Ruth

>

> From: blind-diabetics

> [mailto:blind-diabetics ] On Behalf Of Arnold

> Sent: Sunday, February 03, 2008 10:15 AM

> To: blind-diabetics

> Subject: New to the group

>

> My nameis Capt. Lighthouse aka Gerry and I'am legally blind and

> diabetic type 2. Have been diabetic for over 35 years and was

exposed

> to Agent Orange when I was in Vietnam that caused my diabetes. Have

> been legally blind since 2005 and have been active with the Blinded

> Veterans Association and hold life membership in the group. I was

the

> founder of Agent Orange Diabetic Victims a yahoo group and no

longer

> run the organization. Thank you for offering me membership into the

> group and I hope that I can be of some assistance to this group.

>

February 3, 2008

yep, my father in law was diagnosed 5 years ago after being exposed to it in

Viet Nam. Just goes to show you, to hell with stem cell research, but if the

government feels it's to blame for exposure during war, they'll help you out.