hello everyone

[Guest guest]

,

hey!!! I am so glad things are looking good your way. Your post made me so upset, I hope that someone didn't say something wrong. I think you are such a sweet & strong woman, and who cares if you don't post!!!! Heck, my Mom is so weak she can't go to the restroom alone. She is still on 1000 mg of predisone. So she never posts, and some days or good then others. Well I am so glad to see you back, I am thinking of you everyday. There are so many nice people on this board and I pray everyday for all of you. I can't stand to see this diease eating my mother away. She is no longer the same, and I guess she won't be. I just cry and pray for a miracle. I forgot my id and code, so I need a new one. Well I will start writing back after my surgery the 20th. I'll tell you later about that. Well I need to go and get some stuff for Mom. I now take care of her everyday, and went to a eye doctor yesterday. I am so tired after doing things don't seem to have time for this computer. But I know in my heart things will soon get back to normal......Well it has to or I will be typing from a mental ward LOL love always,

Kim

Kathie,

Thanks so much for checking on my Mom. You are so sweet and cried when I saw your posting. I thought man they still remember me...... Mom has switched doctors, Dr. Trentham emailed me a new doctor in Houston. His name is Dr. Joe Spindler Mom just loves him, and now we are hoping for some results. They are worried about the aortica valve, and throat are running test. She is super weak, with all the medicine, and some days she has flares in different parts. She is on alot of medicine can't seem to know them except do know 1000 mg predosone. I'll type them later. I am running crazy....taking care of Mom, Christmas shopping, I am having surgery the 20th, my poor husband has learned to eat fast food regular LOL. I am praying for a miracle and we need one soon before I am in a mental ward . I know I sound crazy, but starting to become it. Will try to keep you updated if you don't hear from me, I will be in Houston for my surgery, and will type back when I get back. Do know I pray for all of you everyday.

PS Glenda you always make me laugh you are too funny

Love all of ya,

Kim

Also wanted to send that guy who was in the hospital a card, forgot his name, how do I get the address. I was praying for him.

[Guest guest]

Dear Kim, there are so many of us who feel the same way you do. If you can

get a group rate in the mental ward just let us know/

1,000 mgs of Pred is alot.

Take care of you....Love, Sue M

[Guest guest]

Dear Kim, there are so many of us who feel the same way you do. If you can

get a group rate in the mental ward just let us know/

1,000 mgs of Pred is alot.

Take care of you....Love, Sue M

[Guest guest]

Kim

So good to hear from you! I am sending good thoughts and prayers your way! Gosh you don't need to worry about posting to us! Do you hear! We will understand if we don't hear from you for awhile. But.... Please know that we are here for you whenever you need us!

It sounds like you are meeting yourself coming and going! Your Mom must be special to have a daughter like you! Try to take care of yourself please!

Lots of LoveGlenda

Yesterday is History....Tomorrow is a Mystery...Today is a Gift!

[Guest guest]

Kim

So good to hear from you! I am sending good thoughts and prayers your way! Gosh you don't need to worry about posting to us! Do you hear! We will understand if we don't hear from you for awhile. But.... Please know that we are here for you whenever you need us!

It sounds like you are meeting yourself coming and going! Your Mom must be special to have a daughter like you! Try to take care of yourself please!

Lots of LoveGlenda

Yesterday is History....Tomorrow is a Mystery...Today is a Gift!

[Guest guest]

... Oh girl it is sooo good to hear from you! Boy I can really

understand how the traveling wears you out. I just go by car and can't

imagin what the plan trips would do. I'm so glad that you have some

wonderful doctors... It's about time Huh?

I hope you have a wonderful holiday season and stay well. Please!!! You

post when you can and know that I'm always thinking of you.

hugs

[Guest guest]

... Oh girl it is sooo good to hear from you! Boy I can really

understand how the traveling wears you out. I just go by car and can't

imagin what the plan trips would do. I'm so glad that you have some

wonderful doctors... It's about time Huh?

I hope you have a wonderful holiday season and stay well. Please!!! You

post when you can and know that I'm always thinking of you.

hugs

[Guest guest]

Kim, Please know that I haven't forgotten you or your mom. I really do have

to keep up better... I know you must have so much on your mind... I hope your

surgery goes well and that your mom starts to respond to the pred soon.

Please know that we are all here for you... Keep us updated on how you and

your mom are. Your mome is really lucky to have such a caring daughter... I

just know things will get better soon.

hugs

[Guest guest]

Kim, Please know that I haven't forgotten you or your mom. I really do have

to keep up better... I know you must have so much on your mind... I hope your

surgery goes well and that your mom starts to respond to the pred soon.

Please know that we are all here for you... Keep us updated on how you and

your mom are. Your mome is really lucky to have such a caring daughter... I

just know things will get better soon.

hugs

[Guest guest]

Welcome!

Unfortunately, your story is all too familiar! So glad you found this site!

Knowledge is power!

God bless,

<A

HREF= " http://hometown.aol.com/lisareynolds64/myhomepage/personal.html " >http://ho\

metown.aol.com/lisareynolds64/myhomepage/personal.html</A>

[Guest guest]

Hi Eldaduin,

I just wanted you to know that I read your rant, and I hear you. Sounds

like you are really looking out for yourself -- Bravo! It is upsetting when

you're being treated as a lemming. The fact that you were just told about

one option, RAI, is the reason this group exists. Antithyroid medication

should ALWAYS be tried first. Outside the States, you probably wouldn't

even been considered a candidate for RAI, being young as you are and in

childbearing years.

If you haven't already seen it, I'd recommend that you see Pam B's Open

Letter to the Newly Diagnosed in the files section of this site:

http://health.groups.yahoo.com/group/graves_support/files/

Elaine 's book, Graves' Disease: A Practical Guide, is also highly

recommended.

If you have specific questions, please don't hesitate to ask. You can post

your labs (with the normal ranges) and get help interpreting; please keep a

copy of all lab results from now on, as it will help immensely. In addition

to posting here, many people frequent the Graves' Discussion at Mediboard.com.

At 01:34 AM 10/28/2003, you wrote:

>Hello everyone, I am new here. Let me tell you a bit about myself. I

>am a 21 year old female who recently got married and was hoping to

>get pregnant soon. Two months ago I was diagnosed with Grave's. I

>have been sick for over two years.

[Guest guest]

Hi Eldaduin,

That's a name I've never heard before! Welcome to the group, and I'm glad

you found us. You are a prime example of the deplorable state of health care

in areas of this country (I assume it's US?). GD is not so hard to diagnose,

and the fact that it took so many years for them to get around to even doing

labs is appalling. And then, to try to railroad you into destroying your

thyroid without even telling you the options, good grief!

We hear stories like this frequently, and as a group I think our reward is

to be able to help and educate people like you, preferably before they

destroy your thyroid.

Doctors don't seem to have the slightest concern that destroying the gland

that regulates metabolism is (oh, please pardon this bad pun) overkill.

Now you have to learn exactly how to take care of your health. There is a

great body of information to digest--here, on our home page, are a bunch of

informational files. Also Mediboard has a thyroid 101 section you should

review. You need to be proactive in demanding the proper lab tests--which

they didn't give you. You need to be tested for FT4, FT3 and TSI antibodies,

plus a liver panel. Often, if you don't have a baseline liver panel before

they start medicating you, they use skewed liver numbers later as a way to

force RAI on you--saying the ATD's have adversely affected your liver. But

GD affects it too, so the best defense is a good offense, in this case. Do

share all your lab results with us, **with the lab's reference ranges**,

which vary from lab to lab, and we'll help interpret them.

The course of treatment will include the beta blocker to lower your heart

rate initially--you should be weaned off it slowly, as soon as your ATD's

(the PTU) start working and your heart rate calms down. Don't let them take

you off the BB's all at once. It does take PTU (the drug of choice if you

want to get pregnant, as it doesn't cross the placenta) about 6 weeks to

completely work. This is because there is a lot of stored hormone

circulating in your system, and you have to use it up (layman's terms--I'm

no med pro!). Then you should see a substantial effect. You will be kept on

a high dose only briefly after that, if your doctor knows what he/she is

doing. The objective is to get you euthyroid (within normal ranges on the

FT3 and FT4 tests, the TSH is NEVER what should be used to dictate dose even

though many doctors ONLY use it!) and slowly, incrementally, reduce your

dose to a maintenance level. In all cases, PTU should be taken 8 hours

apart, as it has a short half-life, and you want to keep your levels even.

High/low swings from missing doses are not good.

There's lots more I could say--I have to get to work! But anyway, you'll get

other responses. Right now I just want to tell you you did the right thing.

There are, btw, plenty of women in this group who've gone through pregnancy

on PTU, and when you do get to the point of trying for the baby again, will

advise you well. Also, you'll be pleasantly surprised that many if not all

of the symptoms you described will resolve when your thyroid levels

stabilize.

Terry

>

> Reply-To: graves_support

> Date: Tue, 28 Oct 2003 06:34:50 -0000

> To: graves_support

> Subject: Hello everyone

>

> Hello everyone, I am new here. Let me tell you a bit about myself. I

> am a 21 year old female who recently got married and was hoping to

> get pregnant soon. Two months ago I was diagnosed with Grave's. I

> have been sick for over two years. I originally thought I had

> gallbladder disease because my main symptoms were vomiting and

> diarrhea. I had an ultrasound, an EGD, a colonoscopy and tons of lab

> work. I have suffered from depression and nervousness for the past 9

> years or so, so I really didn't consider things like that symptoms

> so I never told the doctor (or nurse practitioner...I've still only

> seen a doctor for my stomach, for everything else I've only been

> allowed to see a nurse practitioner). Finally, after all of this

> testing I got a phone call at 7:30 one night from a frantic nurse

> saying that they had gotten some more of my blood work back and my

> thyroid levels were off. She had me come in the very next morning at

> 8:30. They took me back before anybody else and the nurse

> practitioner explained to me that she was almost positive that this

> was a lab mistake and she was sure that this next set would come

> back normal. So I felt relieved and left the office. The next

> evening the nurse called back at 7:00 saying that these were still

> off so she scheduled a nuclear scan for me the next day. I went that

> morning and picked up my lab results to know for myself. They were:

> Thyroid uptake: 43.00, Thyroxine (T4): 17.5, TSH: <0.01

> I was unable to talk to anyone at the office about what this all

> meant. So I went on to the hospital and had my scan done. The tech

> would hardly give me the time of day, let alone explain anything to

> me. So, two days later the nurse called again and said " Well, it

> looks like you have Grave's disease! We don't know much about it, so

> we are sending you to see an Endocrinologist in another town. Well,

> you will actually only see the nurse practitioner there...but she is

> good. " So my appointment was set for two weeks later. In the

> meantime I had no one to talk to about any of this and had no idea

> what was going on.

>

> So when my doctor's appointment finally came I thought I would

> get some answers and I was feeling pretty optimistic. Ha. She rushed

> in dragging a student, barely addressed me, made a few jokes, felt

> my neck, then informed me that I was going to have RAI. She didn't

> even ask me what symptoms I was having or anything. I got concerned

> when she said the word radioactive and I told her that I was hoping

> to concieve soon, so she said, " Oh well, you may be 22 when you can

> think about getting pregnant but I guess we will just see. " She

> acted like after this miracle I would be fine. Well I guess my only

> saviour was the fact that I had stopped taking my birth control. She

> decided to go ahead and put me on propanolol (2 a day) and PTU (4 a

> day) and back on the ortho. So, she didn't want to do the RAI until

> after the ortho was working so I wouldn't get pregnant.

> Well, here I am and in 5 hours I will leave to drive over 2 and

> a half hours to the Endocrinologists' to supposedly schedule my RAI.

> Well, won't she be shocked when she finds out I've been doing my

> homework and when I present to her all of the horror stories I've

> been reading about RAI and GD. All she is concerned with is killing

> my thyroid. Not the disease. I am so mad that I was treated like

> some stupid lemming and not even given an option. Even after I told

> her about wanting to get pregnant ASAP...my husband and I have

> already bought the crib set, bassinet, and a lot of other stuff and

> we are crushed. So needless to say I don't relish the thought of

> having my body pumped full of radioactive stuff then trying to have

> a baby and maybe never being able to. And to top it all off, I never

> lost any weight with this. I'm not skinny to begin with...so what am

> I suppose to do if I do have RAI and go hypo?? Gain 200 pounds and

> be fine with it? Anyways, sorry I am venting and I know this has

> gotten terribly long. I apologize, it's just been so incredibly hard

> not having anyone to talk to about all of this. But I'm glad I've

> found out what I have in time so I can force her to tell me the

> truth or get a second opinion. Thank you all for listening to me

> ramble. I appreciate it. God bless and take care.

>

>

>

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

> 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.

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

> --------

>

>

[Guest guest]

Hi,

Welcome to the group. It's good you're doing your homework. The total T4 test

is often falsely elevated, and a low TSH is not as ominous as it sounds. TSH

can be suppressed to <.01 even when your thyroid hormone levels are still

normal. It's important to have both an FT4 and FT3. These are levels of your

free

thyroid hormone, the hormone that's available to your cells. Your uptake, if

this was a 24 hour result, was only mildly elevated.

Keep learning all that you can. It sounds like you may not be working with

experienced practitioners. Best, Elaine

Please visit my web site at http://daisyelaine_co.tripod.com/gravesdisease/

[Guest guest]

Welcome! Your story - the frantic, over-reacting nurse; the hurried

scheduling into RAI, and more, are unfortunately not uncommon. I wish you

the best. You have great potential to do well. I hesitate to say this but

think that maybe you should file these thoughts somewhere:

If you do have active hyperthyroidism (I just came back from out of town

and am so swamped with mail I can't pay your post full attention) and

trying to conceive, don't take more than 300 mg a day. You may have

difficulties conceiving now; unfortunately, hyper women may have a higher

tendency to miscarry. NOT that this will happen to you. But should you

hear of such an instance, etc., it may well be the hyperthyroidism that's

the cause and the silver lining for someone in this situation is knowing

that at least she's able to conceive.

I hope you and your husband have classic taste since this may take a

while ;-) Your commitment,and (if I may say this from the elderly

vantage point of 39 going on 40) and maturity will get you through this.

Take care, Fay

________________________________________________________________

The best thing to hit the internet in years - Juno SpeedBand!

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[Guest guest]

Hi Jack,

I know you'll get lots of great answers from parents on this

listserve. I just wanted to let you know that there is another Mom

from Peru with a young daughter with RSS who is a member of MAGIC.

You can contact Lily at lilybersi@.... Lily has flown from

Peru with her daughter to our MAGIC convention two years in a row!!!!

As far as what to do to treat RSS, here is my short list of things

you will want to learn about (from docs, from this listserve, etc!).

1: Make a decision on how to increase weight gain

--> Appetite stimulant (Periactin)

--> G-Tube

--> Nightime cornstarch

--> Increased complex carbs/proteins/fats. Less sugars.

2: If GERD (reflux) is a problem, cheat medically (e.g. zantac),

behaviorally (meal modification) and/or surgically (e.g.

fundoplication)

3: Be vigilant for hypoglycemia

4: Get school support

--> Hypotonic muscles: Physical therapy, occupational therapy

--> Extra snacks at school

--> Appropriately sized chairs, etc.

5: Once weight/height ratio is decent (not too skinny...at least in

15th% for this ratio), consider using Growth hormone therapy

6: Monitor, at least yearly, growth factors levels, hormones, bone

age

7: In the future, as child enters age 7, 8, be on the lookout for

early adrenarche (pre-puberty signs). Puberty accelerates growth,

but then " freezes " the growth plates, essentially stopping further

growth. So the key is to get as much growth as possible before

reaching that point.

The key here is to be under the care of a pediatric

endocrinologist/Gastroenterologist. Genetics team is good for

diagnosing, not for treatment.

Most important: Join MAGIC. You will get a list of all the free

library articles. Over 100 dedicated to RSS. Go here to join:

www.magicfoundation.org

Good luck!

Katy Frissora

co-Consultant for RSS Division, MAGIC

>

>

> Hi I'm Jack from holland,

>

> A while back I met a woman from Peru (I have a latin background so

> speak spanish). She has a little girl of 5 years old which lately

had

> been experiencing leg pain. She told me the child was once

diagnosed

> as having Russel Silver syndrome. Her financial situation is such

that

> she cannot provide proper health care for her child. I've decided

to

> help her in any way I can and maybe you people here can help me out

as

> I have a lot of questions. I've just now started my research on

this

> syndrome and am surprised by it's seriousness. I do not want to

> imagine what will happen to this girl if she continues like this

with

> minimal medical care.

>

> So my foremost questions at this moment are:

>

> - as far as your experience goes, could her leg (bone) pain be

related

> to the syndrome?

> - She's 5 years old. What are the most important things to do

(health

> wise) for a child that age with this problem? Are there some

> guidelines, or is this something which must be diagnosed and

> determined by specialists?

> - are there any known experts on this subject? or " must-have "

links?

> Any known hospitals in europe/us conserning this? (I'm in holland

atm)

> - what are the standard treatments for this syndrome(I've read

about

> growth hormones a bit, such things)..

>

> I'm just starting on this quest, so my apologies if I'm asking the

> obvious on this list,

>

> Thanks for any information you can provide,

> Jack

> jack@c...

[Guest guest]

Hi, I wanted to introduce myself as I've been reading with interest

all the posts here for almost a week now My name is Josie and I live

with my partner and my 2 sons Kai (5 N.T ) and Jay ( asd 3 ).

We live in notinghamshire in U.K. Jay was diagnosed with autism in

January this year, we found out after frantic research on the

internet about the gfcf diet and at the same time tried to find a

good homeopath experienced with treating autism. The diet was

implemented in February but immediately despite improvements inJay

with eye contact etc and recovering the few words he had lost the use

of , it felt wrong, really wrong to be using all the gfcf flours and

processed substitutes. I still have a jar of gfcf cheese sauce that I

couldn't bear to open! Before jay was diagnosed we had as a family a

really " healthy " diet or so I thought! We bought our food all

organic and fresh, milled our own organic spelt flour to make our

bread, limited dairy intake etc but that all changed after the

diagnosis. So, I remembered a book that a friends of ours had in

Greece ( we lived there for over 15 years ) called nourishing

traditions and got a copy for myself, initially I was hoping that I

could still make my own flour etc and that by soaking the grains I

would be able to avoid all the gfcf flour but it seems at least for

now that isn't possible. Then I came across Dr. Natasha Cambell

McBride and heard ( via the internet) her interview with Donna Gates

at the autism convention last year which really clicked with me, went

onto her website, ordered her book and made an appointment with her

and because of her book came across pecan bread and you guys. I

haven't actually implemented the SCD diet yet as I was asked not to

change anything in Jay's diet until I see her in June. This has been

so hard to do,knowing that you can help your child further and not

doing it . but I realise that to keep the picture clear that it is

the best thing to do. However I am sure and hopeful that in a month I

will be able to start on the intro diet minus dairy and although

nervous feel extremely positive about it. Diet seems so obviously the

place to start, you can feel the good and harm food is doing to your

child can't you! I've been practicing the baking without flour,

managed some pretty decent muffins and I'm hoping that if I can

manage to bake in bulk a few times a week it will be fine, although I

can't say I'm not worried about the first week!! I'm vegetarian, so

all the meat broths is a bit like yeuch! but Jay loves meat . God

knows how I'm going to get the vegetables down him though, on a good

day he will eat chicken soup but as of yet only as long as there is

potato in it!! I reckon all your advice with how to sneak the

veggies in is going to much appreciated!!!!!! Anyway, I've gone on

way too long, TIA for all your tips and support, I hope that I too

can be of some use to you in the future, it's wonderful what you're

all doing for yourselves and your children, much love to you and

yours, Josie

ps I had a really bum day today, Jay was particularly " spacey " and

his problems were so intensely in my face in a room full of normal 3

year olds at preschool, I was at the edge of tears all day, reading

all your messages made me feel so less alone, thank you so much for

that xxxxxxxxxxxxxxxxxxx

Kai (NT ) and Jay (ASD and about to start SCD, though he doesn't know

it yet!!)