A suggestion regarding the current discussion on RAI...

[Guest guest]

Elaine, once again I appreciated your input here. And your in-depth research

authorizes your opinion in a way that made me think we would benefit from a

suggestion to 'place our voices in context'.

My experience tells me that there are no satisfactory, short-term cures for

any autoimmune condition. I believe that it is important to take

responsibility to be as informed as possible and to adopt a posture of

lifelong commitment to self-management of your own wellbeing. Science is far

from understanding the aetiology of disease in general and autoimmune

disease in particular.

I have found this entire thread to be helpful to my education process. I

think that it reflects well the confusion in the medical community regarding

treatment options.

No current treatment option is without side effects. It is imperative that

we manage our fear of the disease and of its treatment in order to minimize

stress and maximize the opportunity for remission. Knowledge is empowering.

However, when the 'facts' are unbalanced, or presented in a manner which

heightens fear, it's difficult to experience the empowering aspect.

Contributors to this thread have offered opinions that vary in the source of

their authority. Some have been authorized mainly by personal experience,

some mainly by research, some by both. It's important when we attempt to

authorize our opinions with research that we be willing to listen to

research or 'facts' that challenge our point of view.

It's also important that we become aware of our emotional investment in our

opinion. Reynolds, for instance, because of her powerfully negative

experience with RAI, has a very strong opinion and her natural fear makes

her voice powerful. She acts responsibly when she owns what fuels her

opinion [as she did in earlier posts]. The degree to which emotion colors

our voice can influence its weight and sometimes make it difficult to hear.

I suspect that Liang too, has an emotional investment in her opinion. She

has just chosen a course of treatment that she needs to feel as good about

as possible in order to minimize her stress and maximize her opportunity for

remission of her disease process.

The mind is one factor in healing and disease that research has demonstrated

is incredibly powerful in both directions {I can cite evidence if you wish,

just not now as I'm stewarding my energy}. Let's effectively employ our

minds in our common goal of health and wellbeing. Let's take personal

responsibility for our opinions and all that informs them--science, emotion

and experience. Let's speak for ourselves and let the board in on what

'authorizes' our voice in the discussion, OK? This will be particularly

helpful for us 'newbies'.

Thanks for listening,

Sheila

* newly diagnosed TED

* numerous other autoimmune disorders

* trained as a psycho-spiritual therapist

* committed to the 'stewardship of pain for transformation'

Re: Re: a very useful link to another support

group- Re: al...

Hi ,

Although it's been mentioned here that the majority of people do fine with

RAI, and 5 years ago I may have even said this, there are no studies that

back

this statement when it comes to long-term patients. The few studies

pertaining

to the wellbeing, general health, and mortality rates of patients treated

for

hyperthyroidism do not support this view.

I think the majority of patients treated with RAI may feel fine for the

first

year or so, but studies show that hypothyroidism becomes more severe about 6

years after RAI and for most people, thyroid antibodies persist for at least

10 years. The risk of developing GO, acropachy and pretibial myxedema

remains

for at least 30 years after RAI. And the elevation in thyroid antibody

titers

causes the fluctuating symptoms that we complain about. Often, patients do

not

realize that symptoms such as depression, hearing loss or joint pain are

related to these fluctuating levels until they begin researching their

condition or

other problems related to autoimmunity emerge.

As for the comment someone made that this discussion board wasn't

scientific,

I don't think it was ever intended to be. The board does offer educational

support and it offers concrete information about the interpretation of

laboratory results. But when scientists worldwide can't even agree on the

optimal

treatment for GD or the nature of autoimmunity, a scientific discussion

board would

still be riddled with differing opinions. Best to all, Elaine