RAI - good or bad? What are your experiences?

[Guest guest]

Hi there

This is my first post. I was first diagnosed with Graves in 1990

after the birth of my first child but a course of Carbimizole seemed

to sort it out. The problem reoccured when I had my second child

three years ago and I was quite quickly sorted again with

Carbimizole. I have now had a relapse though and my Consultant is

recommending RAI. Quite frankly I am terrified by the prospect of

this!! My only experience of taking thyroxine was when I was taking

Carb. and thyrox together (something and block procedure) and I was

really depressed and a complete zombie. Has anyone had a positive

experience of this treatment. I am habitually anxious. Maybe this

will help. Or are all my fears grounded. Read yesterday about

thyroid storm/hypo dangers of the procedure.

Thanks

LOU

[Guest guest]

> Hi there

> This is my first post. I was first diagnosed with Graves in 1990

> after the birth of my first child but a course of Carbimizole seemed

> > to sort it out. The problem reoccured when I had my second child

> three years ago and I was quite quickly sorted again with

> Carbimizole. I have now had a relapse though and my Consultant is

> recommending RAI.

I have to wonder if you were appropriately treated this time around since

you were " quickly sorted out. " Were you kept on for an arbitrary amount

of time or till your TSI antibodies were less than 2 and your numbers

were stable and normal? Not being in the USA (first hint: Carbimizole ;-)

might you have access to a choice of endos, and one who's skilled in

treating with ATDs, possibly even block and replace?

Just a few weeks ago there was a flurry of posts on this subject. It

shouldn't be too much of a hassle to check the archives and see if the

name Liang comes up frequently.

> this!! My only experience of taking thyroxine was when I was taking

> Carb. and thyrox together (something and block procedure) and I was

> really depressed and a complete zombie.

Ah, like a recipe, I should read the post through to the bottom before

starting on it ;-)

When you had BRT did you start the thyroxine right away, or after your

carb. was reduced? If you started it when still at too high a dose of

carb. you had to have a balancing dose of thyroxine and probably it was

way too large.

Has anyone had a positive

> experience of this treatment.

Let me play devil's advocate as far as most of the members of this list

are concerned (myself included) and give a possibly positive scenario for

RAI:

- one can't have any manifestation of thyroid eye disease because of the

subsequent increased risk of TED

- ideally one should be stabilized prior to RAI on anti thyroid drugs to

reduce the risk of thyroid storm

- one's dose of RAI should be very carefully callibrated to either render

the patient euthyroid and totally avoid needing replacement hormones or

to make the descent into hypothryoidism very gentle (this is a skill that

at one time was attempted wih some success).

- one's endo should be very skilled in prescribing all thyroid hormone

supplements, not just those that address T4, and willing to do frequent,

comprehensive testing

Last but not least, one should not have little children! Liang had RAI

after giving it much more consideration and having access to medical

sources for resources than most people. Like another member, also male,

also a scientist, he took much more extreme safety precautions than the

doctors recommend - the drs. seem quite cavalier about this. It's also

convenient to work in a lab with a counter to ascertain when one an feel

comfortable about not being a danger to others.

He did mention that the distance he has to maintain from his family is

difficult (IIRC this has got him out of something like 80% of the

housework he'd usually contribute, not just a matter of not hugging his

kids), so you can imagine how much more complicated this is for a primary

caregiver.

So I think you should feel confident about trying ATDs again, and make

sure they're given and monitored properly. Please feel free to share your

labwork with the group, telling us the ranges your lab gives for normal,

for input.

Take care, Fay

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[Guest guest]

Hi Lou,

There's no reason to destroy your thyroid gland when your immune system is at

fault. The meds will help you lower your thyroid hormone levels and help your

immune system heal. Once your immune system stops producing the thyroid

antibodies causing the problem, you'll be in remission.

Avoiding environmental triggers like excess dietary iodine will help move the

process along and so will stress reduction techniques like yoga or tai chi.

It sounds like you were on block and replace therapy. This is a good protocol,

but some doctors worry about adding the thyroxine and keep their patients

hypothyroid. For many of us, hypoT can be worse than the hyperthryoidism. If

your

doctor monitors you with the correct lab tests, there's no reason you'd need

to become hypothyroid while on meds. Take care, Elaine

[Guest guest]

Hi,

This happens all too often -- people are not properly managed on

medications, and then the doctor recommends RAI. And for this reason, we

need to be fully aware of how to monitor ourselves. Please educate yourself

thorougly before making a permanent, irreversible treatment decision such

as RAI; 30% of people have problems afterwards. Perhaps you can do ATD

therapy alone, rather than Block & Replace, which takes more skill to

manage. My guess is that you were too blocked and not enough replaced! You

can also visit Mediboard.com, and start with the Thyroid Awareness 101 thread:

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

At 07:01 AM 11/12/2003, you wrote:

> > Hi there

> > This is my first post. I was first diagnosed with Graves in 1990

> > after the birth of my first child but a course of Carbimizole seemed

> > > to sort it out. The problem reoccured when I had my second child

> > three years ago and I was quite quickly sorted again with

> > Carbimizole. I have now had a relapse though and my Consultant is

> > recommending RAI.

[Guest guest]

Hi Lou,

Please think long and hard before you submit to RAI. I was naive

and trusted doctors in 1998 when I was diagnosed with Graves and had

RAI. This was the worst mistake I ever made. The last five years

have been a nightmare. You can read my story at

http://www.notovertillthefatladysings.com.

I cannot reverse the effects of RAI on my body but I can warn others

to be very very careful before they submit to this barbaric

treatment.

Thank you

Widebertha (Luci)

> Hi there

> This is my first post. I was first diagnosed with Graves in 1990

> after the birth of my first child but a course of Carbimizole

seemed

> to sort it out. The problem reoccured when I had my second child

> three years ago and I was quite quickly sorted again with

> Carbimizole. I have now had a relapse though and my Consultant is

> recommending RAI. Quite frankly I am terrified by the prospect of

> this!! My only experience of taking thyroxine was when I was

taking

> Carb. and thyrox together (something and block procedure) and I

was

> really depressed and a complete zombie. Has anyone had a positive

> experience of this treatment. I am habitually anxious. Maybe

this

> will help. Or are all my fears grounded. Read yesterday about

> thyroid storm/hypo dangers of the procedure.

> Thanks

> LOU