PTU vs. RAI - To Chris and Fay

[Guest guest]

Hi Chris-

I think Fay may have been referring to anecdotal evidence (which Jody, ,

Elaine and I have been through) rather than " random rhetoric " .

Unfortunately, there are problems in getting good information out there when

relying on anecdotal evidence because often people attribute problems or

cures to one thing when they may be because of another problem or a cure

might not really be a cure but may be because of a placebo effect.

I have been reading scientific papers on a variety of science subjects for

over 10 years (had to-that's how I got my master's in biology-plus I have an

academic emergency physician husband). Many of them have been thyroid

related. And one thing I have found is that the studies that promote RAI

are not " good solid info " . They are studies that don't control variables

and deal mostly with mortality not quality of life.

I believe some people are big proponents of RAI precisely because they have

been mismanaged on ATDs. And when you have people that are constantly told

that they risk death staying on a drug, well, they might be more willing to

believe that RAI is better because they aren't told that a significant

minority (at least 30% according to some studies) of patients don't do well

afterwards. Most U.S. physicians honestly believe that RAI is the quickest,

easiest and cheapest way to treat Graves'. That's what they are taught in

medical school. They aren't exactly right because if that was true, then

all doctors worldwide would be routinely using it and they aren't. That

fact alone should give anyone pause. And doctors do not monitor patients

any more than once/year once they believe the patient is stabilized. If you

have problems before that year is up, tough luck.

RAI didn't work well for me (after being hypo for 11 years afterwards and

trying to conceive for 7) and my husband and I will discourage anyone in our

family from getting it (since Graves' is genetic it might come up-although

they won't need any discouragement because they've seen what I've been

through).

And to those that are contemplating RAI. Please read those studies yourself

and don't rely on a doctor to tell you about them. What I've found is that

they are nebulous and the variables aren't controlled so any problems down

the line can't be attributed to RAI even if they are caused by it. They do

not know.

Take care,

dx & RAI 1987 (at age 24)

> Hi Fay and all -

>

> I hope you don't push delete just yet.......

>

> Can you tell me what is the difference between " solid info "

> and " random rhetoric " and also, is there something wrong with there

> being a strong anti-RAI bias here?

>

> I just get a little confused when some people seem to feel that RAI

> deserves equal time here. You DO know that there is no shortage of

> websites and message boards out there that are 100 percent pro-RAI,

> and anyone is welcome to try those.

>

> Yes, everyone SHOULD listen to Jody, and , and Elaine, and -

> and listen GOOD!!!!! At least they still care enough to try to warn

> others of the dangers involved.

>

> An endo may spin you a lovely tale of the wonderment of RAI, but how

> do you know if you will be one of the lucky ones who do well on it?

> ARE there lucky ones, or have they just learned to accept a different

> quality of life? How will you feel in 6 weeks, 6 months, 6 years?

> If you do experience problems, will your endo be as attentive AFTER

> the deed is done, as he is while talking you into it?

>

>

> Thanks for your time,

> Chris

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

> Diagnosed with Graves' May 1979

> On tapazole since May 1979

> Age 53 - menopause at 46

>

> Currently on 6 mg/da Tap, 30 mg/da inderal

>

> Latest testing:

>

> 8/6/02 -- FT4 - 0.99 (0.71 - 1.85), FT3 - 4.4 (2.2 - 4.0)

> 9/9/02 -- FT4 - 1.1 (0.7 - 2.2 ), FT3 - 5.4 (1.5 - 4.1)

> 9/30/02 -- FT4 - 1.3 (0.7 - 2.2), FT3 - 4.7 (1.5 - 4.1)

> 11/12/02--FT4 - 0.9 (0.7 - 2.2), FT3 - 3.6 (1.5 - 4-1)