Re: Re: I have no choice left!

January 27, 2006

If your thyroid is messed up to the point that it could injure or kill you, and is in such a state that you can't take medication or wait for surgery... RAI will take care of the thyroid so it won't kill you.

I'm against RAI as the first choice... it's too radical a procedure to be considered a first choice... too many times it's an 'easy way out' for the doc... no work for them but they can really rake in the money for it and those are the ones that don't explain to you how to minimize the risk to the rest of your body.

If you are told up front what to watch for so that you can do things that need to be done.... that's the difference.. but, again, too many of the docs that consider it the 'easy way out' are the ones that don't tell you anything.

You have time to set things up... have everything ready... do it in a comfortable and proper manner... You'll know what to watch for, during and after....

Me... I got told to get out of the hospital before I contaminated everyone and wasn't told about anything... just given photocopy of a page on decontamination. You'll have everything set up, know what is going on, and have us to 'talk' to .....

Topper ()

On Fri, 27 Jan 2006 03:54:22 -0000 "lillucysmama" writes:

Thank you Tina. No, she should definately not be able to treat thyroid or any patients in my opinion. I'm just so afraid right now of the RAI with the night mare posts I have been reading everywhere. Does anyone have anything positive to say about it? Or a positive POST RAI?Again thanks from a very scared Lil.

January 27, 2006

If your thyroid is messed up to the point that it could injure or kill you, and is in such a state that you can't take medication or wait for surgery... RAI will take care of the thyroid so it won't kill you.

I'm against RAI as the first choice... it's too radical a procedure to be considered a first choice... too many times it's an 'easy way out' for the doc... no work for them but they can really rake in the money for it and those are the ones that don't explain to you how to minimize the risk to the rest of your body.

If you are told up front what to watch for so that you can do things that need to be done.... that's the difference.. but, again, too many of the docs that consider it the 'easy way out' are the ones that don't tell you anything.

You have time to set things up... have everything ready... do it in a comfortable and proper manner... You'll know what to watch for, during and after....

Me... I got told to get out of the hospital before I contaminated everyone and wasn't told about anything... just given photocopy of a page on decontamination. You'll have everything set up, know what is going on, and have us to 'talk' to .....

Topper ()

On Fri, 27 Jan 2006 03:54:22 -0000 "lillucysmama" writes:

Thank you Tina. No, she should definately not be able to treat thyroid or any patients in my opinion. I'm just so afraid right now of the RAI with the night mare posts I have been reading everywhere. Does anyone have anything positive to say about it? Or a positive POST RAI?Again thanks from a very scared Lil.

January 27, 2006

If your thyroid is messed up to the point that it could injure or kill you, and is in such a state that you can't take medication or wait for surgery... RAI will take care of the thyroid so it won't kill you.

I'm against RAI as the first choice... it's too radical a procedure to be considered a first choice... too many times it's an 'easy way out' for the doc... no work for them but they can really rake in the money for it and those are the ones that don't explain to you how to minimize the risk to the rest of your body.

If you are told up front what to watch for so that you can do things that need to be done.... that's the difference.. but, again, too many of the docs that consider it the 'easy way out' are the ones that don't tell you anything.

You have time to set things up... have everything ready... do it in a comfortable and proper manner... You'll know what to watch for, during and after....

Me... I got told to get out of the hospital before I contaminated everyone and wasn't told about anything... just given photocopy of a page on decontamination. You'll have everything set up, know what is going on, and have us to 'talk' to .....

Topper ()

On Fri, 27 Jan 2006 03:54:22 -0000 "lillucysmama" writes:

Thank you Tina. No, she should definately not be able to treat thyroid or any patients in my opinion. I'm just so afraid right now of the RAI with the night mare posts I have been reading everywhere. Does anyone have anything positive to say about it? Or a positive POST RAI?Again thanks from a very scared Lil.

January 27, 2006

Good point, Kat....

Lil.... make sure that after all the excess hormone is used up and it's time for replacement that it's done right... that is soooo important... talk to the doc now about replacement after... what types he uses, what he'll be testing for and how often... make sure this is all set up before hand and that he knows that you have no intention of being dumped on again.. this is going to be done correctly from now on and you will be in charge..... the two of you... you and the doc.... will be working together on this.....

Topper ()

On Fri, 27 Jan 2006 04:21:47 -0000 "kats3boys" writes:

My mom had RAI, she went hypo really fast and unfortunately it took her a year to get her levels normalized..Now she is doing much better, much better than she has in a few years although she did not go through the hyper phase of meds..she was long term undiagnosed hyper and as soon as they discovered it she went for RAI.I really think RAI has two main concerns besides the obvious radiation part of it..One damaging the gland causes it to release extra hormones..this can cause thyroid storm so as much as you want to drop the PTU you may need it for a week after..if your numbers have gone back high ask the doctor what your risk of thyroid storm is and what plan he has to control it. Symptoms to watch for etc?Hypo..you will go hypo..Do not let the doctor give you Synthroid to take and tell you to come back in 3 months.. you need blood work every 6 weeks..your first one earlier if you are feeling rough..as a general rule you need to use up all the stored hormone in your body first..then start on replacement hormone, then every 6 weeks you need proper bloodwork, TSH, FT4, FT3..dose adjustment if needed, follow up labs in 6 weeks, dose adjustment as needed and repeat..you need to do this until both labs and symptoms say you are fine..then repeat blood work in 6 weeks..then 3 months, 6 months..This was my mom's biggest problem and why it took her so long to feel right..6 months after RAI she was still on the same dose and had only had the first bloodwork done to say she was now hypo..Once I convinced her it was not normal to feel like crap cause she had a thyroid problem..she did the routine and now is doing much better.You will go hypo..so you need to change your view and look at yourself as hypo, not hyper..understand symptoms and what to expect..Fear of the unknown is the worst..understanding what to expect will make it a lot easier on you..Kats3boys

January 27, 2006

Good point, Kat....

Lil.... make sure that after all the excess hormone is used up and it's time for replacement that it's done right... that is soooo important... talk to the doc now about replacement after... what types he uses, what he'll be testing for and how often... make sure this is all set up before hand and that he knows that you have no intention of being dumped on again.. this is going to be done correctly from now on and you will be in charge..... the two of you... you and the doc.... will be working together on this.....

Topper ()

On Fri, 27 Jan 2006 04:21:47 -0000 "kats3boys" writes:

My mom had RAI, she went hypo really fast and unfortunately it took her a year to get her levels normalized..Now she is doing much better, much better than she has in a few years although she did not go through the hyper phase of meds..she was long term undiagnosed hyper and as soon as they discovered it she went for RAI.I really think RAI has two main concerns besides the obvious radiation part of it..One damaging the gland causes it to release extra hormones..this can cause thyroid storm so as much as you want to drop the PTU you may need it for a week after..if your numbers have gone back high ask the doctor what your risk of thyroid storm is and what plan he has to control it. Symptoms to watch for etc?Hypo..you will go hypo..Do not let the doctor give you Synthroid to take and tell you to come back in 3 months.. you need blood work every 6 weeks..your first one earlier if you are feeling rough..as a general rule you need to use up all the stored hormone in your body first..then start on replacement hormone, then every 6 weeks you need proper bloodwork, TSH, FT4, FT3..dose adjustment if needed, follow up labs in 6 weeks, dose adjustment as needed and repeat..you need to do this until both labs and symptoms say you are fine..then repeat blood work in 6 weeks..then 3 months, 6 months..This was my mom's biggest problem and why it took her so long to feel right..6 months after RAI she was still on the same dose and had only had the first bloodwork done to say she was now hypo..Once I convinced her it was not normal to feel like crap cause she had a thyroid problem..she did the routine and now is doing much better.You will go hypo..so you need to change your view and look at yourself as hypo, not hyper..understand symptoms and what to expect..Fear of the unknown is the worst..understanding what to expect will make it a lot easier on you..Kats3boys

January 27, 2006

Good point, Kat....

Lil.... make sure that after all the excess hormone is used up and it's time for replacement that it's done right... that is soooo important... talk to the doc now about replacement after... what types he uses, what he'll be testing for and how often... make sure this is all set up before hand and that he knows that you have no intention of being dumped on again.. this is going to be done correctly from now on and you will be in charge..... the two of you... you and the doc.... will be working together on this.....

Topper ()

On Fri, 27 Jan 2006 04:21:47 -0000 "kats3boys" writes:

My mom had RAI, she went hypo really fast and unfortunately it took her a year to get her levels normalized..Now she is doing much better, much better than she has in a few years although she did not go through the hyper phase of meds..she was long term undiagnosed hyper and as soon as they discovered it she went for RAI.I really think RAI has two main concerns besides the obvious radiation part of it..One damaging the gland causes it to release extra hormones..this can cause thyroid storm so as much as you want to drop the PTU you may need it for a week after..if your numbers have gone back high ask the doctor what your risk of thyroid storm is and what plan he has to control it. Symptoms to watch for etc?Hypo..you will go hypo..Do not let the doctor give you Synthroid to take and tell you to come back in 3 months.. you need blood work every 6 weeks..your first one earlier if you are feeling rough..as a general rule you need to use up all the stored hormone in your body first..then start on replacement hormone, then every 6 weeks you need proper bloodwork, TSH, FT4, FT3..dose adjustment if needed, follow up labs in 6 weeks, dose adjustment as needed and repeat..you need to do this until both labs and symptoms say you are fine..then repeat blood work in 6 weeks..then 3 months, 6 months..This was my mom's biggest problem and why it took her so long to feel right..6 months after RAI she was still on the same dose and had only had the first bloodwork done to say she was now hypo..Once I convinced her it was not normal to feel like crap cause she had a thyroid problem..she did the routine and now is doing much better.You will go hypo..so you need to change your view and look at yourself as hypo, not hyper..understand symptoms and what to expect..Fear of the unknown is the worst..understanding what to expect will make it a lot easier on you..Kats3boys

January 27, 2006

Hi Lil,

is right - if your life depends on RAI, do it,

but prepare yourself for afterwards - ask lots of

questions (your doctor and us here in the group) and

arm yourself with information. Tell your doctor that

you need him to listen to you and how you feel

afterwards - Kat is right - you'll need a checkup

sooner than 3 months afterwards. Be assertive as you

have been - make it through Monday and have a plan for

caring fot yourself afterwards. We're here for you...

((hug)) M.

--- topper2@... wrote:

> If your thyroid is messed up to the point that it

> could injure or kill

> you, and is in such a state that you can't take

> medication or wait for

> surgery... RAI will take care of the thyroid so it

> won't kill you.

>

> I'm against RAI as the first choice... it's too

> radical a procedure to be

> considered a first choice... too many times it's an

> 'easy way out' for

> the doc... no work for them but they can really rake

> in the money for it

> and those are the ones that don't explain to you how

> to minimize the risk

> to the rest of your body.

>

> If you are told up front what to watch for so that

> you can do things that

> need to be done.... that's the difference.. but,

> again, too many of the

> docs that consider it the 'easy way out' are the

> ones that don't tell you

> anything.

>

> You have time to set things up... have everything

> ready... do it in a

> comfortable and proper manner... You'll know what

> to watch for, during

> and after....

>

> Me... I got told to get out of the hospital before I

> contaminated

> everyone and wasn't told about anything... just

> given photocopy of a page

> on decontamination. You'll have everything set up,

> know what is going on,

> and have us to 'talk' to .....

>

> Topper ()

>

> On Fri, 27 Jan 2006 03:54:22 -0000 " lillucysmama "

>

> writes:

> Thank you Tina. No, she should definately not be

> able to treat

> thyroid or any patients in my opinion.

> I'm just so afraid right now of the RAI with the

> night mare posts I

> have been reading everywhere.

>

> Does anyone have anything positive to say about it?

> Or a positive

> POST RAI?

>

> Again thanks from a very scared Lil.

__________________________________________________

January 27, 2006

At the time, I didnt' have a choice.. if the first doc I saw wouldn't have been such a prejudiced A** and diagnosed me in thyroid storm then, I would have been able to use medication to control things.... I've found out since then, that because of the condition that I have, genetically flawed TSH receptors, that this particular condition can be treated with medication, the same blockers used for other hyper conditions until the gland slowed again... I would have had to monitor after that... to make sure that the gland didn't slow down to far, too long... or speed up and go back to storm... but considering all that I have to monitor now, from the damage from being hyper for decades, in storm for over a year, underdosed with synthetic replacement for a decade... .... I'd rather have my gland and monitor.

Choice between RAI and surgery.... surgery still runs some risks... but, as a person that has never had a surgery (except microsurgery when they put my finger back together) surgery seems to have fewer risks than RAI.

RAI is just easier.. for them.. the idea being kill off the gland, take away all variables, then add replacement, and usually not enough... then give other medications to mask the symptoms that result from low thyroid hormone.

From what I've seen, being involved in the support groups for all this time...it's the docs that discuss all the options, and all the choices for the meds after.. and consider symptoms.. those are the ones to go to..... They care.

If all the doc can say is RAI and we'll get rid of it..... okay... options? do you really know what you are doing? Synthroid, it's the only thing... Oh, really, what about Cytomel, and natural? What about the percentage of folks that can assimilate the synthetic, can't convert efficiently enough to survive with the T4 only meds? What about the dye allergies.... ?

I want to hear options... I want information.... I want choices... I want discussion..... I never got any of that... .I was told I was too fat to be sick (40 pound weight loss in 30 days after starting a new job at a vending company where I got all the pop and cookies and candy I wanted to stuff in my face is normal?) I was told I was imagining symptoms (200 pound weight gain in less than 2 years is something I imagined?)

All I ever got was take this to kill your gland or it will kill you, it's your fault for not doing anything about it before now, get out of here before you make us sick....

Then it was take this pill in the morning, it's all you need, the symptoms that you have are in your imagination, shut up.

Do your research, ask questions, understand, ask more questions. Be sure of your options, how each will or will not affect you... then ask more questions. Be sure of your choice, have your plan laid out... and be open minded to supplementing your knowledge after....

Keep the goal in mind that you want to live life and not just exist. There is a HUGE difference between not being dead... and living. I'm living again now.... I was not dead for a LOT of years... Trust me, living is better.

And all of us can live... We have the tools to learn, one of them is right here... talking to hundreds of others that have experiences to share that you can tap into to find what will work best for you.

End of preachy... sorry....

Okay.. removal of gland.. the thyroid gland tissue is very delicate and isn't always in a prefect shape or location... they can remove MOST of the tissue during a total thyroidectomy but not all, there is always some left behind.. that is why, especially in the case of cancer, they use RAI after the surgery to make sure that all the gland tissue is gone. During the surgery first, then the RAI means a LOT less radiation is needed to finish the job...

Each case is very different, how it affects us is very individual.. that's why there is no one pat answer.. you have to determine how it affects you, what is causing the problem in the first place, then make the best choice.....

Now that I've confused the dickens out of you.... got any questions! hehehe

Topper ()

On Fri, 27 Jan 2006 16:34:31 -0000 "lillucysmama" writes:

Thank you. I really feel more comfortable with the surgery and will consult with him today on that. Would (in hind site) you have had the surgery instead? He said it is much more risky to remove a whole thyroid rather than a partial and that is what I would need.

January 27, 2006