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9-1-45

I need Help

Gee this is not my week let me tell you all.

Everything that can go wrong is going wrong!!!

Ok I screwed up on my putter here and therefore I need you guys to help me out again.

Could you all send me your Birthdays once more please ???? I only need the date not the year if you don't like to give that out.OK

Please help me with this. I promise to not screw up again. Well on the other hand I cant guaranty it either. LOL I am a Blond !!!!!! LOL

Thank you all. Send it to

heidi@... DISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU

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9-1-45

I need Help

Gee this is not my week let me tell you all.

Everything that can go wrong is going wrong!!!

Ok I screwed up on my putter here and therefore I need you guys to help me out again.

Could you all send me your Birthdays once more please ???? I only need the date not the year if you don't like to give that out.OK

Please help me with this. I promise to not screw up again. Well on the other hand I cant guaranty it either. LOL I am a Blond !!!!!! LOL

Thank you all. Send it to

heidi@... DISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU

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--- Heidi Main wrote:

> Gee this is not my week let me tell you all.

> Everything that can go wrong is going wrong!!!

> Ok I screwed up on my putter here and therefore I

> need you guys to help me out again.

> Could you all send me your Birthdays once more

> please ???? I only need the date not the year if you

> don't like to give that out.OK

> Please help me with this. I promise to not screw up

> again. Well on the other hand I cant guaranty it

> either. LOL I am a Blond !!!!!! LOL

> Thank you all. Send it to

>

> heidi@...

>

Sharon here---11/11/44

=====

__________________________________________________

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--- Heidi Main wrote:

> Gee this is not my week let me tell you all.

> Everything that can go wrong is going wrong!!!

> Ok I screwed up on my putter here and therefore I

> need you guys to help me out again.

> Could you all send me your Birthdays once more

> please ???? I only need the date not the year if you

> don't like to give that out.OK

> Please help me with this. I promise to not screw up

> again. Well on the other hand I cant guaranty it

> either. LOL I am a Blond !!!!!! LOL

> Thank you all. Send it to

>

> heidi@...

>

Sharon here---11/11/44

=====

__________________________________________________

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  • 1 year later...
Guest guest

Hi Laurie:

First I must tell you that others on this group

can give you much more information that

you need than I can. But I feel compelled

to give you a few comments on your posting:

-No doctor can " force " you to take RAI. You

have to sign a " consent " form...just don't

sign it...at least not until you have had at

least another opinion & never until you are

ready.

-With RAI, there is no going back. You do

NOT need RAI as your first treatment... you

should likely just say " no " & tell the doc that

you want to take PTU or Tepazole (PTU is

more popular), and you then tell that doc

that you will decide about if you want to

eradicate your thyroid, but at your own time

-No doctor can legally withhold lab test

results from you. Write a letter to that

doctor, send it certified to him, requesting

nicely copies of " all of your lab tests " . If

you want, you can later demand copies of

your entire medical records he has on

you. **If that doc refuses...after 1 follow

up letter...you can sue him for LOTS of

money.** It's illegal to not provide you

with copies of blood tests.

-If you have RAI, you cannot be around

your son...probably for at least 4 weeks,

and I think " optimally " not for 8 weeks.

To do otherwise, you are radioactive and

you could distroy his thyroid, literally. In

fact, you can't be around a lot of people

for awhile. RAI is a rather (my opinion)

" barbarian " method. I guess it has its

place (as last resort)...but you have not

even been given any other choices.

-Doctors can also be sued for forcing

you into one treatment. But you don't

want to get into that...just get copies of

your lab tests...and go see another doc.

-You don't need an Endo. In fact, some

people on this list insist that endos are

perhaps the least likely to be cooperative,

from their experience. **You have a

good relationship with your regular

MD...he/she will give you PTU or Tepazole

(antithyroid drugs), if you state your case

and why.

-There are lots of places that list the

reasons " why RAI is not so great " . Start

with the " files " section on this web site,

right from the home page of this

graves support list. **Also, check out

the files on Elaine 's web site, and

you'll have all the information you ever

need. Here is the link...check it out " now " ,

it is terrific.

http://daisyelaine_co.tripod.com/gravesdisease/

-Keep asking questions to the list, and

put " urgent " in the titles. Unfortunately it

is Friday, and there aren't as many who

post over the weekend. But you have a

lot of reading to do (as mentioned above).

I hope I have given you some good places

to start.

(Remember...RAI is the cheapest medical

method, & lots of docs are not knowledgable

enough to even discuss other options. It's

easy on them...and provides nothing but

problems for you the patient!).

Remember...you are in charge, it is your

choice!

Best to you,

Ron

swimmerron@...

diagnosed 4/01, GD including TED, have

been on PTU since beginning with no

problems, eyes improved, now on low

maintenace dose of PTU, and I am

persuing alternative therapies.

> Hi everyone.

> I've been trying to find postings that will tell me what happens

> when you have the RAI treatment. I have a friend that is going

to go

> to the Endo with me and because she doesn't have Graves

Disease, she

> doesn't know that much about RAI. I've been searching the

web to

> find info to e-mail her and I've found some but everything is

basicly

> telling me to have the RAI. I want to find reasons not to. I go

> Monday to fight with the Endo because he's trying to force RAI

on me,

> and she's my support. He's still telling me that it's ok to be

> around my son, but me being the mom I am, I DON " T THINK

SO!!!!! I'm

> a single mom and my friend will be watching my son if I have

RAI or

> Surgery so she wants to know what's going on. I'm also going

for a

> second opinion. I'm not that happy with a Dr that tells me my

test

> results are none of my business. Again, I DON'T THINK SO!!!!!

I

> need everyone to understand that I live in a small town and the

endo

> I have is 45 minutes away, the next closest is 4 hours away, so

just

> finding another Dr. isn't that easy for me. The second opinion

that

> I'm getting is from a Dr that I've known my intire life. He's going

> to do research and such also to give me the best possible

advise he

> can. So anything anyone can send me or tell me would help

with him

> also. Thanks in advance!

> LAURIE

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Guest guest

Hi Laurie:

First I must tell you that others on this group

can give you much more information that

you need than I can. But I feel compelled

to give you a few comments on your posting:

-No doctor can " force " you to take RAI. You

have to sign a " consent " form...just don't

sign it...at least not until you have had at

least another opinion & never until you are

ready.

-With RAI, there is no going back. You do

NOT need RAI as your first treatment... you

should likely just say " no " & tell the doc that

you want to take PTU or Tepazole (PTU is

more popular), and you then tell that doc

that you will decide about if you want to

eradicate your thyroid, but at your own time

-No doctor can legally withhold lab test

results from you. Write a letter to that

doctor, send it certified to him, requesting

nicely copies of " all of your lab tests " . If

you want, you can later demand copies of

your entire medical records he has on

you. **If that doc refuses...after 1 follow

up letter...you can sue him for LOTS of

money.** It's illegal to not provide you

with copies of blood tests.

-If you have RAI, you cannot be around

your son...probably for at least 4 weeks,

and I think " optimally " not for 8 weeks.

To do otherwise, you are radioactive and

you could distroy his thyroid, literally. In

fact, you can't be around a lot of people

for awhile. RAI is a rather (my opinion)

" barbarian " method. I guess it has its

place (as last resort)...but you have not

even been given any other choices.

-Doctors can also be sued for forcing

you into one treatment. But you don't

want to get into that...just get copies of

your lab tests...and go see another doc.

-You don't need an Endo. In fact, some

people on this list insist that endos are

perhaps the least likely to be cooperative,

from their experience. **You have a

good relationship with your regular

MD...he/she will give you PTU or Tepazole

(antithyroid drugs), if you state your case

and why.

-There are lots of places that list the

reasons " why RAI is not so great " . Start

with the " files " section on this web site,

right from the home page of this

graves support list. **Also, check out

the files on Elaine 's web site, and

you'll have all the information you ever

need. Here is the link...check it out " now " ,

it is terrific.

http://daisyelaine_co.tripod.com/gravesdisease/

-Keep asking questions to the list, and

put " urgent " in the titles. Unfortunately it

is Friday, and there aren't as many who

post over the weekend. But you have a

lot of reading to do (as mentioned above).

I hope I have given you some good places

to start.

(Remember...RAI is the cheapest medical

method, & lots of docs are not knowledgable

enough to even discuss other options. It's

easy on them...and provides nothing but

problems for you the patient!).

Remember...you are in charge, it is your

choice!

Best to you,

Ron

swimmerron@...

diagnosed 4/01, GD including TED, have

been on PTU since beginning with no

problems, eyes improved, now on low

maintenace dose of PTU, and I am

persuing alternative therapies.

> Hi everyone.

> I've been trying to find postings that will tell me what happens

> when you have the RAI treatment. I have a friend that is going

to go

> to the Endo with me and because she doesn't have Graves

Disease, she

> doesn't know that much about RAI. I've been searching the

web to

> find info to e-mail her and I've found some but everything is

basicly

> telling me to have the RAI. I want to find reasons not to. I go

> Monday to fight with the Endo because he's trying to force RAI

on me,

> and she's my support. He's still telling me that it's ok to be

> around my son, but me being the mom I am, I DON " T THINK

SO!!!!! I'm

> a single mom and my friend will be watching my son if I have

RAI or

> Surgery so she wants to know what's going on. I'm also going

for a

> second opinion. I'm not that happy with a Dr that tells me my

test

> results are none of my business. Again, I DON'T THINK SO!!!!!

I

> need everyone to understand that I live in a small town and the

endo

> I have is 45 minutes away, the next closest is 4 hours away, so

just

> finding another Dr. isn't that easy for me. The second opinion

that

> I'm getting is from a Dr that I've known my intire life. He's going

> to do research and such also to give me the best possible

advise he

> can. So anything anyone can send me or tell me would help

with him

> also. Thanks in advance!

> LAURIE

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Guest guest

Laurie,

I'm glad you made it to this group. There is SO MUCH to say, but I think it

best for now if I get to the point. PLEASE, please, please do not get RAI

right now. You need time to make an informed decision, and if you get RAI,

you cannot change your mind. It is permanent.

I am on medication (PTU), and so far, so good. If I need to do something

permanent, I will have surgery rather than RAI, but I'm going to do

everything I can to prevent that from happening. You may want to read

responses to my initial posts at the AtomicWomen Yahoo Group

http://groups.yahoo.com/group/AtomicWomen/ starting with #926, dated

6/16/03. There is so much information contained in those posts, and it may

save people from having to repeat themselves.

Also, please go to the Graves' Discussion section at Mediboard.com and read

the Thyroid Awareness 101 thread:

http://www.mediboard.com/ubb/ultimatebb.php?ubb=get_topic;f=1;t=004549

You will have no trouble coming up with reasons to refuse RAI. From what

you have written, I believe you have keen instincts and you just need to

follow them. You are correct that you cannot be near your son if you have

RAI for days if not weeks (I wouldn't even want to be near my cats for

weeks if I had RAI). You are also correct that you are completely entitled

to your records, and you should be an active participant in your treatment.

You definitely need a second opinion (and probably a change in doctors

altogether). Unfortunately, you may have a tough time finding an endo who

will agree to treating you properly. But have no fear, treatment of this

illness is not beyond your comprehension. You can actually get the results

you seek (hopefully remission) by working with a cooperative GP. You just

need to do your homework. (My GP is more " with it " than my endo, and I only

go to the endo because my GP wants me to -- I think he doesn't feel

comfortable taking sole responsibility.)

Elaine 's book, Graves' Disease: A Practical Guide is a great

resource. You can get a copy, and you will be on your way to better health.

But first, did you even get TSI antibodies tested? And did you get an

ultrasound of your thyroid? If not, then your diagnosis is in question.

Lastly, if you are looking for reasons not to have RAI, then DON'T DO IT.

The immune system is at fault, not the thyroid (if you even have Graves'),

and nuking your thyroid does nothing to address the underlying problem.

ATDs (the anti-thyroid medications) have an immunosuppressive effect that

can help you achieve remission. Graves' disease runs a course, and

something like 10-25% of people a year go into remission:

http://www.ithyroid.com/graves_treatments.htm If you have any eye

involvement, there is a good chance RAI will make it worse (may even

trigger it if you don't currently have eye symptoms).

Well, I guess I had more to say than I thought!

Happy reading,

At 10:16 PM 8/8/2003, you wrote:

>Hi everyone.

> I've been trying to find postings that will tell me what happens

>when you have the RAI treatment.

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Guest guest

Aileen Fletcher

Assistant professor of Art

New River Community College

Dublin, Va. 24084

nrfleta@...

, ext. 4468

>>> dolphinsaremylove@... 08/08/03 22:16 PM >>>

You should run from a doctor that tells you your test resuts are none of

your business. Aileen

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Guest guest

Aileen Fletcher

Assistant professor of Art

New River Community College

Dublin, Va. 24084

nrfleta@...

, ext. 4468

>>> dolphinsaremylove@... 08/08/03 22:16 PM >>>

You should run from a doctor that tells you your test resuts are none of

your business. Aileen

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Guest guest

Hi,

I had RAI in June. Had I found this site first, I would have reconsidered

it. The worst side effect I got is that my eyes got even dryer and swollen. In

fact today I am going to go have puntal plugs put in my ducts. Also, I got the

sore neck/throat, nausea, very tired and basically just didn't feel like

myself for a few weeks. In short I would have tried another treatment..at least

for a while.

Take Care,

Marlene

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  • 5 months later...

hello all. i am new to the group and i have had my surgery on dec 29

2003. my name is lauren and i am 22 years old. i just wanted a little

encouragement and help because i do not know how i am going to get

through this. did anyone feel this way? i mean i am doing ok when i

went for my one week appt i had already lost 15 pounds. i am just

depressed out of my mind. i feel like what the hell did i do to

myself? one of my incisions is leaking like crazy, my dr had to pop

it open it was painful. i had no complications with surgery but i

feel like damn. i am not hungry ever and i cry and cry and do not

know why. i was driving myself crazy staying in for that week and

today i tried goign out to get my nails done but i felt so weak and

light headed. i dont know how i am going to get through this. my dr

told me i can start eating chicken and i had some tonight and i swear

it tasted like the best i ever had. i dont understand. i just need

help. i am contacting the hospital for support groups but until then

i figure i will try this online thing a shot and i am looking if you

guys have any tips for someone just starting out on foods- like what

you can handle or not (im so afraid of dumping and i vow never to eat

anything that will make me dump) and exercise tips - my dr said i can

start regular exercise. well thats all i just needed to vent

lauren

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hello all. i am new to the group and i have had my surgery on dec 29

2003. my name is lauren and i am 22 years old. i just wanted a little

encouragement and help because i do not know how i am going to get

through this. did anyone feel this way? i mean i am doing ok when i

went for my one week appt i had already lost 15 pounds. i am just

depressed out of my mind. i feel like what the hell did i do to

myself? one of my incisions is leaking like crazy, my dr had to pop

it open it was painful. i had no complications with surgery but i

feel like damn. i am not hungry ever and i cry and cry and do not

know why. i was driving myself crazy staying in for that week and

today i tried goign out to get my nails done but i felt so weak and

light headed. i dont know how i am going to get through this. my dr

told me i can start eating chicken and i had some tonight and i swear

it tasted like the best i ever had. i dont understand. i just need

help. i am contacting the hospital for support groups but until then

i figure i will try this online thing a shot and i am looking if you

guys have any tips for someone just starting out on foods- like what

you can handle or not (im so afraid of dumping and i vow never to eat

anything that will make me dump) and exercise tips - my dr said i can

start regular exercise. well thats all i just needed to vent

lauren

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,

You will be OK!! Just hang in there and run, run, run to your PCP

and get started on some antidepressant medication. You have been

through a massive life change. It didn't end when you woke up from

anesthesia. It will continue to be an adjustment...and hopefully a

good one since you've had no major complications.

You may be expecting too much from yourself this early on. For now,

please allow yourself to feel how you feel. You have earned the

right to feel crappy!! Questioning yourself only makes it harder,

right?

Remember, you have closed the door on a lousy part of your life and

walked through the door of good health and self esteem (and fun

clothes). It will get better!

11/18/03

284/249 pre op/221/?

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,

You will be OK!! Just hang in there and run, run, run to your PCP

and get started on some antidepressant medication. You have been

through a massive life change. It didn't end when you woke up from

anesthesia. It will continue to be an adjustment...and hopefully a

good one since you've had no major complications.

You may be expecting too much from yourself this early on. For now,

please allow yourself to feel how you feel. You have earned the

right to feel crappy!! Questioning yourself only makes it harder,

right?

Remember, you have closed the door on a lousy part of your life and

walked through the door of good health and self esteem (and fun

clothes). It will get better!

11/18/03

284/249 pre op/221/?

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