Re: Trying to make decision

[Guest guest]

Hello!

I had RAI 2 years ago and have not been stable on a dose of thyroid hormone

replacement for more than a few months at a time. Aside from the physical

symptoms of bouncing from hypo to hyper and severe TED, the most frustrating

thing for me post RAI has been finding a doctor who will do the proper tests for

monitoring your hormone levels or who is willing to prescribe a replacement

other than Synthroid. Most doctors cling to 2 thyroid myths for dear life:

1) TSH is the golden standard test for monitoring. False. It is a great

diagnostic tool, but beyond that, it is unreliable for monitoring a patient with

an autoimmune thyroid disorder.

2) Synthroid is just the same as the hormone your thyroid produces. False.

It is Synthetic T4. Our thyroid produces other hormones naturally, and the

synthetic T4 could never adequately replicate it.

You can read more about my life before and after RAI at the link below.

Please do all the research you can before making a life altering, permanent

decision.

God bless,

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[Guest guest]

That's great that you're reading and learning all you can about hyperT/Graves,

and what you can be faced with later down the road. I think that whatever

choice you make, at least you have the tools to make an 'informed' decision. I

myself let my first dr run a uptake scan which I later found out I didn't need.

He also recommended that I was a 'good candidate' for RAI. I'm still chuckling

over that one.

One thing I have found is, that in all this, most Dr's in the U.S. are mostly

interested in saying RAI is the only option. They are known to tell people who

are faced with these symptoms and this disease that 'anti thyroid drugs are

dangerous' which scares the beejeebers out of people, as well as saying, just do

the RAI, and I can see you every month, instead of every other month, or they'll

say that they refuse to even try ATD's. To me, that is the sad part.

If we're not given the tools to educate ourselves with, where this disease is

concerned, and the Dr's are all taught that RAI is the #1 option to offer us,

and nothing else, how on earth can we find a Dr who is willing to even try us on

ATD's? I live here in the US, and RAI is definately a treatment of choice. I

refuse to go from dr to dr when there are only so many Endo's around and gosh,

there are so many of us who need treatment. And there's a lot of not so great

Endo's out there too, so I realize that they get a heavy patient load, but what

is going on that so many of us have thyroid disorders in the first place. Since

I have this disease, I now have to educate myself, and learn as much as possible

so that I can and will get 'optimal' treatment from my Dr. I've seen 3 dr's,

yet they all said, you're a good candidate for RAI? If they're taught to only

offer this to us, how can we really get a fair deal when we talk to 1,2, 3, or

even 10 about what course of treatment to take? It's not easy to find an Endo

who's Mr or Ms Wonderful, but an Endo who can at least respect the fact that

there are those of us who 'want' to make our own choices, and not be bullied

into doing what 'they think is the proper method of treatment'.

It's starting to look like a library around here, as I have Elaine's book,

Graves Disease, The Thyroid Solution by Dr Arem, Shoman's books,

Hypothyroidism, and Autoimmune Diseases (what your dr may not tell you about

them). lol. I have found more help in learning about this disease right here

online and in those books, and sharing with people who've chosen whatever routes

they've chosen. Hopefully somewhere in all this we all end up going through,

helps somebody else who's having a hard time deciding what is the right course

to take.

I recently asked my hubby who is really tired of me being sick. I asked him one

simple question. Somebody had posted about us being 'anti RAI' on another list

and I was talking to him about it. He looked at me and said, what is RAI? I

looked him straight in the eyes and told him of my dr's insistance after the

uptake scan, that I needed to do RAI. I then told him that while RAI might work

for some, I didn't see any sense in putting something toxic into my body that

could harm another person including myself. He wasn't sure what I was saying,

so I had to spell it out for him. I've seen countless posts on who's dr tells

them what on the RAI subject, but the end result was....when I asked him. How

'good' for me is this toxic dose of radioactive iodine' that they say I 'really

need' to kill off my thyroid with, where I should even use a different bathroom

than you and the kiddo use for 5 - 7 days. That if I took this dose, then I was

told by my Dr that there would be no kissing or 'no sex' for 7 days, as he

could get cancer from the exchange of bodily fluids, yet this dose is not going

to affect anything but my 'thyroid'. He looked me square in the face and told

me not no, but ABSOLUTELY NOT. He then asked, If it's that dangerous for me,

just because you took it, then how good is it really for you? I have no answer

for him. But we both agree on one thing. How can something be 'that good' for

me that is going to kill off a gland that I need, but isn't going to affect

'another part of my body' in the years to come. So far, I haven't heard of

anybody who can assure me that I'll never have to worry about any cancer later

on in years from this dose.

That is what keeps me on ATD's. I figure I can take them for a lifetime unless

something really major happens to make me have to resort to another form of

treatment. :-) And If I'm going to have to take something, then why not have

it be ATD's, instead of a thyroid pill which I might have to take the rest of my

life. I feel that whatever choices I make, they are mine to make. I do refuse

to be pushed into anything that makes me uncomfortable. My Dr realizes this

too, so as long as he honors and respects my part in all this, I don't want to

have to 'break in' another dr who is most likely going to tell me the same

thing. :-)

Sandy

Trying to make decision

I have just learned that I have GD and, boy, there is sure a lot to

learn. I have joined a couple of groups and love the info I get. It

really provides a lot of topics for research and I am learning the

questions to ask. Thanks to all for being here.

I have found very little about life after RAI. I assume that mose

people (seems like doctors recommend that)follow that course of

treatment, but I can't seem to find a place where they discuss life

after RAI.

Would love some insight into that route just to help me with my

decision.

Thanks!

[Guest guest]

> I have just learned that I have GD and, boy, there is sure a lot to

> learn. I have joined a couple of groups and love the info I get.

> It

> really provides a lot of topics for research and I am learning the

> questions to ask. Thanks to all for being here.

>

> I have found very little about life after RAI. I assume that mose

> people (seems like doctors recommend that)follow that course of

> treatment, but I can't seem to find a place where they discuss life

> after RAI.

Welcome! I for one have no trouble saying I'm anti-RAI but I would also

say that I'm pro-ATDs (or alternative treatment ONLY under the care of a

very skilled and experienced naturopath or holistic MD; this is not a DIY

job!).

Unfortunately, many endos don't recommend ATDs. They don't have

experience and propagate numerous myths, such as the " high " rate of

serious reactions or the " low " remission rate. If remission rates are

indeed low it's because not enough patients have been properly treated

for a legitimate study. The studies I've seen (my research is very

limited) have involved arbitrary cut-off dates for stopping the ATDs

and/or didn't involve checking the patients' antibody levels.

The main points to bear in mind with ATDs are:

- Drs. should start the patient at a high dose and gradually decrease it

till the patient is ready to be taken off it. (Some drs. start patients

at a low dose to see if they can tolerate the ATD then gradually increase

it which is not the best way.)

- There is appropriate baseline blood work to have before starting ATDs.

- There is appropriate blood work to have done to monitor the patient on

ATDs at intervals of no longer than 6-8 weeks.

- There is appropriate blood work to have done before stopping ATDs.

There should not be an arbitrary cut-off date.

If you want to get a basic idea of how a patient should progress on ATDs

check the archives at the end of Feb. of this year for a message I posted

concerning ATD guidelines, how to deal with reactions to ATDs, etc. under

the address cfyoung2@... (or write me offlist at cfyoung2@...).

I've been in remission for over 2 years now after 14 months on Tapazole.

That means, I take NO medications, just supplements (multi without

iodine, calcium with magnesium, B complex, and vitamin C; I have specific

reasons for taking vitamin C). Some people do stay long-term on ATDs; the

inconvenience of taking the medication is minor because they're likely

only taking it once or twice a day and, unlike thyroid hormone

supplement, ATDs can be taken in proximity to other supplements (at least

AFAIK).

Here are some of the downsides of RAI that your dr. won't tell you about:

- as Sandy mentioned, the inconvenience of rearranging your life for a 7

day minimum (and I'm not so sure 7 days are enough) which is not the way

I'd want to use my vacation days

- check out an annotated list linked to the homepage of this group on 20

reasons not to have RAI

- the increased risk of developing thyroid eye disease, which you're

probably aware of if you checked out Reynold's site. TED happens

even without RAI but if one hasn't had RAI one can take ATD's which do

have an effect on the antibodies causing TED which can greatly help in

arresting the TED.

- Doctors may pooh-pooh a lot of the concerns on the list but besides the

increased risk of TED there is one other thing that if a dr. won't admit,

s/he's in denial and not someone you want managing your care and that is,

as also mentioned, the need for skill and experience with thyroid

hormone replacement. So I say this to anyone who would still be

contemplating RAI, even after checking out the 20 reasons list, 's

site, etc. - you better make sure your dr. knows how to monitor and treat

hyperthyroidism. This means FREQUENT blood work, TSH, Free T4 AND Free T3

testing (the Free T3 irregularities are much more common with

hypothyroidism, especially after RAI, than with hyperthyroidism),

antibody testing if needed (especially if one has TED), and familiarity

with HRT beyond synthroid.

There are people who do well after RAI but I think I can say without

exception that any I've met or read posts from regret not having been

fully informed of ALL their options. Getting onto ATDs will give you the

time you need to make a confident, informed decision, and chances are

ATDs will be the treatment you decide on. RAI is NOT reversible. Neither

is surgical removal of the thyroid, a third treatment option for GD, but

unlike RAI, surgery doesn't require isolation or increase the risk of

TED, various cancers, or affect other organs as RAI would. Surgery is

still a dramatic decision but a much better option than RAI.

Take care, Fay

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[Guest guest]

I would like to express my sincere thanks to all that responded to my

original message. For me, this was a hard decision. While I see all

of your warnings, in the back of my mind is the fact that RAI has

been in use for many years and I haven't seen a whole lot of people

regretting the decision.

Your comments have helped me come to the conclusion that this I will

not have RAI, at least for now. If my doctor will not put me on the

drugs, I will just have to find another.

How can I represent a threat of cancer to family and pets, and my

represnt the same threat to myself? That is a powerful question.

And . You cannot imagine the impact of your story to me. Thank

you so much for posting your story and photos. I suspect that I may

have TED. My eyes are always red and I have been having a lot of

trouble focusing lately. I am a birder and recently I have not been

able to focus by binoculars at all. I have noticed that my vision

has really gone down hill lately, but was giving the upcoming

celebration of the big '50' credit for that.

Again, thanks to all of you. I will keep you posted and will be

needing lots of advice I am sure!