Re: rai results - very good

[Guest guest]

Joanna,

I hope you have continued good results post RAI! Things to watch

for.....getting hypo, getting hyper and any eye changes. We are here to

help if you need it! You've got a long way to go.

God bless,

[Guest guest]

Hi Joanna!!

Im so glad to hear your feeling well! Sounds like your endo is a

very attentive physician who will monitor you closely so you dont go

low.

I also had RAI 15 years ago ~ I didnt have many other options because

the PTU were not working after 3 years of trying everything I had to

do something because I was getting worse & worse.

I hope you continue to do great!!!!! Keep us posted

Smiles to you, J

[Guest guest]

Hi Joanna,

I wish you all the success in this but I need to be very honest with you...I

think a month between this appointment and the next is going to make you

pretty hypO by then. Your levels have dropped very quickly, in 15 days by

more than half. Remember the RAI is still working strongly right now and if

you cut in half again in the next 2 weeks and in half again in the next 2

weeks after that, you will find yourself very hypO by the time of your

appointment.

Did your doctor give you a lab slip that you can have labs done if you begin

to feel even one hypO symptom? I would become very very aware of all the

hypO symptoms and pay close attention to your body and what it says to you

and get those labs done as soon as one shows up.

Take care,

Jody

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[Guest guest]

Hi Joanna,

I wish you all the success in this but I need to be very honest with you...I

think a month between this appointment and the next is going to make you

pretty hypO by then. Your levels have dropped very quickly, in 15 days by

more than half. Remember the RAI is still working strongly right now and if

you cut in half again in the next 2 weeks and in half again in the next 2

weeks after that, you will find yourself very hypO by the time of your

appointment.

Did your doctor give you a lab slip that you can have labs done if you begin

to feel even one hypO symptom? I would become very very aware of all the

hypO symptoms and pay close attention to your body and what it says to you

and get those labs done as soon as one shows up.

Take care,

Jody

_________________________________________________________________

Send and receive Hotmail on your mobile device: http://mobile.msn.com

[Guest guest]

Hi Joanna,

I wish you all the success in this but I need to be very honest with you...I

think a month between this appointment and the next is going to make you

pretty hypO by then. Your levels have dropped very quickly, in 15 days by

more than half. Remember the RAI is still working strongly right now and if

you cut in half again in the next 2 weeks and in half again in the next 2

weeks after that, you will find yourself very hypO by the time of your

appointment.

Did your doctor give you a lab slip that you can have labs done if you begin

to feel even one hypO symptom? I would become very very aware of all the

hypO symptoms and pay close attention to your body and what it says to you

and get those labs done as soon as one shows up.

Take care,

Jody

_________________________________________________________________

Send and receive Hotmail on your mobile device: http://mobile.msn.com

[Guest guest]

Joanna,

Thanks for posting! We do need to hear from people who've had a successful

RAI!! I look forward to following your progress. Let's hope all goes really

really smoothly.

Best,

B

rai results - very good

Hi,

I know that a lot of you are really against rai but I promised myself

that I would post objective results from myself if they were valid...

I almost quit this group but feel that if my experience is good, I

should share it, even, knowing that it might be ignored.

I had rai 13th Sept. I know it's quite early to be posting anything

about it, but I went to see my wonderful endo. yeterday and was very

pleased with the results as well as him.

My results were: T3 3.6 from 8.4

fT4 45.5 from 103

When I showed him my lab report (thank you all for encouraging me to

do this!!!) he was very impressed and offered to fill it in and gave

me a hard copy of my results.

When I asked him if I was going to go hypo, he said, " that's what I'm

here for and I will try my best to not let you... "

We spent an hour discussing my condition and the pros and cons of

what I did. He was very thourough in explaining everything to me so

that I understood.

So, that was the visit. I have another one next month, so will keep

you posted.

By the way, for those of you that have been following... I am not

going back to the ship just yet... want to get myself regulated

first.

Take care, Joanna

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[Guest guest]

Joanna,

Glad you're feeling good, and confident in your doc. It does make treatment

so much easier, not to constantly have doubts about the quality of care

you're being given. I'm not familiar with the scale used on FT4 for

you--mine usually read 1.8 on a scale of .75-2.0, for instance. Could you

give us the reference used to scale yours? As it is, I have no idea what it

means. It would help on the FT3 as well.

Thanks,

terry

>

> Reply-To: graves_support

> Date: Sat, 28 Sep 2002 16:27:53 -0000

> To: graves_support

> Subject: rai results - very good

>

> My results were: T3 3.6 from 8.4

> fT4 45.5 from 103

[Guest guest]

Hi Joanna!

I'm happy to see you are intending to keep us informed of what happens to you

in your post-RAI adventure! My Joe had RAI 6 1/2 months ago and, after a

rough spot when he went extremely HYPO (yep, it happened to him) where he had

to be hospitalized for three days, his journey has been good! So, I'm happy

you're optimistic, as is Joe, that you're going to make it through. You

will!

Joe just had an extensive eye exam this week where many tests were performed

on him by a suprisingly well-versed in Grave's ophthalmology eye doctor. She

could detect NO Grave's related eye disease at this point. He said he was

surprised at how much she knew about and he told me of weird tests I had

never heard of before! (And I work in a retinal specialists' office.) How

GREAT!

Joe goes in for his next doctor appointment on Monday and he's been feeling

well enough to start himself on a fairly vigorous exercise program (I should

do the same!). He is currently taking 125mcg of synthroid daily. His last

labs done in July gave almost normal results. That was after four weeks of

100mcg per day.

The 2nd - 4th months after RAI were the worst for him, and he did suffer

extensively in those months, but he says that he definitely would do RAI

again if faced with the choice -- even with all he knows now about his

alternatives. Someone in the group said recently that NONE of the options

available are fabulous, but I'm happy Joe made a choice that was right for

him.

Also, Joanna, if you have any questions, feel free to email me privately

anytime. You have my and Joe's (he just told me that) best wishes.

Hugs,

Ann in Portland, OR

[Guest guest]

Hi Terry,

The standard scale for Canada for T3 is 1.1 - 2.2.

Your 1.8 sounds good!

My Endo. is aiming for anywhere near 1.6, give or take.

Hope this helps...

Take care, Joanna

> Joanna,

>

> Glad you're feeling good, and confident in your doc. It does make

treatment

> so much easier, not to constantly have doubts about the quality of

care

> you're being given. I'm not familiar with the scale used on FT4 for

> you--mine usually read 1.8 on a scale of .75-2.0, for instance.

Could you

> give us the reference used to scale yours? As it is, I have no idea

what it

> means. It would help on the FT3 as well.

>

> Thanks,

>

> terry

>

> > From: " goitergirl514 "

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

> > Date: Sat, 28 Sep 2002 16:27:53 -0000

> > To: graves_support@y...

> > Subject: rai results - very good

> >

> > My results were: T3 3.6 from 8.4

> > fT4 45.5 from 103

[Guest guest]

Eileen Gover wrote:

>

> Thank you for the positive post on RAI. I am having a

> thyroid uptake test on this coming tuesday &

> Wednesday. I have pretty much decided on RAI as my

> choice of treatment. Like you I was ready to quit

> this group because it seemed that almost all were

> against RAI. Please keep posting your results.

Hi Eileen,

Joanne's post is way too early, no one here doubts the ability

of RAI to destroy the thyroid, it is what else it does, and how

well the subsequent hypothyroidism is handled. This is only

something you find out months and years after treatment,

unfortunately you will mostly find people here who are having

trouble post RAI, those for whom it was a breeze (and I'm sure

some such people exist) will have gone away to get on with their

lives.

Based on best scientific advice on RAI, it is already clear

Joanne has been " mistreated " as she was given RAI whilst still

hyperthyroid, which leads to a higher risk of eye complications.

So whilst her endo may be " wonderful " , he is clearly not one to

be swayed by the evidence, which is a trait I value in my

doctors.

Done properly, with corticosteroid treatment, pretreatment with

antithyroid drugs or Iodides, proper fortnightly followup to

avoid hypothyroidism, I think RAI is not an irrational way of

treating hyperthyroidism, indeed I may have it myself at some

point in the future, because in my case the safer surgical

treatment has already been tried, and they don't like doing

repeat thyroid surgery.

One of the key problems I see is that RAI is so rarely done

according to the best scientific advice, but I suspect how it

was taught at medical school, which approach is well past it's

sell-by date.

However before you decide to go this route, you need to ask, and

answer, why it is often the first line of treatment in the US,

but in Europe and Japan antithyroid drugs are used so

extensively.

Devin very sensibly asked " is it availability or cost of I-131 "

that explains the difference? But as far as I can establish it

isn't. I-131 treatment was still cheaper in a recent German

study, so presumably any difference is either historical or

cultural, based on differing emphasis on costs of treatment, or

on the difference in outcomes. Why do European thyroid

specialists prefer such a different treatment regime if it is

more expensive, perhaps they are all spendthrifts?

To answer Pam's question, I think the main reason people opt for

RAI so quickly in the US, is that their doctors recommend it.

Most people want someone knowledgable, and capable to tell them

how to solve their problems, and place great weight on what

those in authority tell them. Put simply " we trust our doctors " ,

right or wrong. The experience here is most US doctors have

rarely treated patients long term with antithyroid drugs, and

those that do are often surprised at how effective such drugs

are, or that their patients don't keel over and die from side

effects. In Europe where drugs, surgery and RAI are all readily

available, and widely used, I think the experience is far

broader, and you are more likely to get a treatment regime

suited to your specific needs.

Whilst I have great respect for my current GP, I suspect that

Elaine's knowledge and experience of Grave's disease is more

extensive than his, even if she is a " lowly " medical technician,

and not some great authority figure, or even qualified to

practice medicine (AFAIK). I have a sneaking suspicion Elaine

may know more about the treatment of Grave's disease than my

endocrinologist, with his professorship in endocrinology, I

suspect she, like others here, is more motivated to seek out the

best treatments possible.

Anyway if you do decide to have RAI, I trust you'll insist on

appropriate treatment regime to protect your eyes.

Simon