Re: I am new to the group and am scheduled for RAI tomorrow...

[Guest guest]

Hi

Reynolds is the one to discuss in depth RAI.

Here's her link:<A

HREF= " http://hometown.aol.com/lisareynolds64/myhomepage/personal.html " >

http://hometown.aol.com/lisareynolds64/myhomepage/personal.html</A>

I know others on this group will tell you Not to do the RAI.

I opted for Meds. And Thanks to this Group, I would Never have RAI....

Please check out 's Page....Please!!

Take Care

Ellen

[Guest guest]

Hi Michele,

I would NOT do RAI without doing all your homework first. You are clearly

not prepared for the potential pitfalls of this treatment, including eye

disease, infertility and a descent into hypO that must be treated for the

rest of your life.

If you have not " correctly " responded to ATD's it is most likely that your

endo has mis-managed your care. If you have already swung hypo to the

extreme, you know what it feels like. That's all you'll accomplish with RAI.

Killing your thyroid does not cure Graves in any way, as GD is an immune

system problem that attacks the thyroid, not a " thyroid disease " . Give

yourself time, don't pressure yourself into permanent treatment. Quite

honestly, most of us here who haven't had RAI would do almost anything to

avoid getting it. We hear nothing but stories of heartbreak, pain and misery

from those people who arrive here post-RAI. And, if you have a doctor who

has not been able to regulate you on ATD's, what guarantee have you got that

he'll be able to do it on thyroid supplements?

I would read the " top 20 reasons not to have RAI " on the home page in Files.

I would tell your doctor you want to postpone your decision on RAI and get

Elaine 's book, Graves Disease a Practical Guide, and read it. I would

also post your meds, dosage changes and labs here for us to look at for the

last year you've been on this roller coaster and see if anyone can help

(including Elaine, who posts here as well as us amateurs).

But most of all, I'd cancel that appointment until you're SURE that you want

RAI and won't regret it later.

Terry

>

> Reply-To: graves_support

> Date: Sun, 24 Aug 2003 19:08:29 -0000

> To: graves_support

> Subject: I am new to the group and am scheduled for RAI

> tomorrow...

>

> Hello Everyone,

> My name is Michele and I am a 33 year old female. I am scheduled for

> RAI tomorrow at 11:30am. I have been suffering with GD and HyperT

> (TSH .001) for over a year. Then I went into extreme HypoT (TSH 108)

> after not responding correctly to the Tapazole no matter how we cut

> down the dose. My Dr. is nice but he just doesn't move fast enough or

> tell me important things. (sounds like many of you are having hard

> times finding a good ENDO.) After browsing some of your prior

> messages, I am wondering why no one has told me about any side

> effects or potential problems after this RAI treatment. I am married

> with no children yet* (yet is the key word since my husband and I

> desperately want a child) I actually was told after this RAI, I

> should be able to have children after waiting at least 6months. Now I

> am scared. Please give me some other examples of potential problems

> of having this done. I don't have time to try to read all of the old

> messages. In case you need to know my uptake level, it was very high

> at 78 (24 hour). Good Luck to you all. It is so nice to have support

> like this. I just feel like I am 100% NUTS! I suffer with almost

> every symptom on the list.

>

>

>

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

> The Graves' list is intended for informational purposes only and is not

> intended to replace expert medical care.

> Please consult your doctor before changing or trying new treatments.

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

> DISCLAIMER

>

> Advertisments placed on this yahoo groups list do not have the endorsement of

> the listowner. I have no input as to what ads are attached to emails.

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>

[Guest guest]

Hi Michele.

Since you're limited for time, I'll just make this point: you may have

been treated with ATDs for a year but that doesn't mean that you've been

treated properly. The fact that you're so severely hypo makes me suspect

that this is the case. Usually one starts at about 30 mg. a day, ideally

splitting the dose in 3 though many people have success taking it just

twice a day. Then depending on regular bloodwork (by regular I mean going

no more than 8 weeks between tests) and your symptoms, gradually lowering

the dose by 5 mg. increments. Following a basic protocol for ATDs

increases the chances of remission and decreases the chances of going

severely hypo. If your dr. didn't recommend splitting the dose, but told

you that once a day was enough, and if he changed your dose too

drastically in either direction, you were not given a good chance at

achieving remission.

Even if you can say that you did follow a sensible protocol of ATDs

please trust me on this: there is a lot of information - such as your

Free T4 hormone levels, TSI, any experience with eye trouble - that will

help members of this group help you. To expect you to provide all this

info by tonight to be interpreted, and for you to thoroughly study the

excellent features of the homepage and suggested articles, and for you

then to make an informed decision is too much pressure. Endos are always

happy to do RAI and will be glad to reschedule you within the month - I

can guarantee it. I can also guarantee that if you have RAI, even if you

do well with RAI (no thyroid eye disease, finding the right amount of the

right thyroid hormone supplement easily) you will feel frustrated and

cheated out of a chance to make an informed decision.

Another thing you would want to do before having RAI, which you obviously

can't do by tomorrow, is study the thyroid hormone supplement options,

the ones that address T4 such as synthroid, levoxyl, etc., T3 such as

cytomel (which is taken with T4) and Armour. A dr. who knows how to treat

hypo patients will be familiar with all of them and amenable to frequent

T3 testing. I AM NOT ADVOCATING RAI !!!!!!!!!!! I am just telling you

this because even people who were fairly well-informed and still chose to

have RAI have found this a major pitfall. You would want to be thoroughly

secure your dr. knows how to treat hypo patients and sadly this is often

not the case. The anecdotal evidence based on members of this group and

others I've met is that getting the right blend of thyroid hormone

supplement is often harder for people who've had RAI than for those

who've become hypo due to other causes. Also, I have a hunch that a

doctor who is competent treating hypoT has basic skills and willingness

to try ATDs too.

Don't let the doctors pressure you into getting it. You do have time to

do the research. If, when you call to cancel tomorrow, someone gives you

a line please share it with us immediately - someone will give you ammo

to counter it with.

> with no children yet* (yet is the key word since my husband and I

> desperately want a child) I actually was told after this RAI, I

> should be able to have children after waiting at least 6months.

Actually, the official organ of endos just said that the waiting time

should be 12 months.

It is good if you would be willing to wait till you got into remission

and spent a few months off meds to see if it were lasting before trying

to conceive. This could likely mean 24 months as opposed to 12 post-RAI.

However, if you had such trouble on Tap and after your research feel that

your doctor did give it an honest shot, maybe you'd want to try PTU this

time. The advantage is that once you'd be more stable, as soon as half a

year, and on a more moderate dose, you might want to try for a baby then,

since PTU at moderate doses (300 maximum, and 300 is fairly strong) is

safe for pregnancy.

Another fine option but one I personally wouldn't do unless I were in my

late 30s and wanting a baby, or I tried PTU and Tap and after a fair

trial neither worked, is partial thyroidectomy. Keep this in back of your

mind as you resume ATDs because it would take some time to arrange it

all; meanwhile you can give ATDs a real shot.

If you decide to start researching tonight and find it too much stop. If

you've firmly decided not to have RAI take a nice bubble bath, relax,

have a picnic or a long walk with your husband, do something really

relaxing and enjoyable because there's NO PRESSURE on you. (If you are

still planning on RAI maybe you should plan on an all-nighter then...;-)

There's enough time to get the info you need without getting stressed

out.

Take care, Fay

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[Guest guest]

Michele, you don't mention any #'s other than TSH in your email. I'm hoping

that you were also having Free T3 and FreeT4 ran also while you were being

treated with Tapazole. What dosage of Tapazole were you started on, and what

was your Dr going by when he was decreasing the meds?

I was diagnosed HyperT/Graves in Nov or Dec 2001. I'm now on 5 mgs of

Methimazole (generic Tapazole) and 50 mgs of Atenolol for blood pressure and

heart palpitations. My second endo kept me on too much Methimazole and I went

hypoT, which wasn't much fun either.

Sandy~Houston

I am new to the group and am scheduled for RAI

tomorrow...

Hello Everyone,

My name is Michele and I am a 33 year old female. I am scheduled for

RAI tomorrow at 11:30am. I have been suffering with GD and HyperT

(TSH .001) for over a year. Then I went into extreme HypoT (TSH 108)

after not responding correctly to the Tapazole no matter how we cut

down the dose. My Dr. is nice but he just doesn't move fast enough or

tell me important things. (sounds like many of you are having hard

times finding a good ENDO.) After browsing some of your prior

messages, I am wondering why no one has told me about any side

effects or potential problems after this RAI treatment. I am married

with no children yet* (yet is the key word since my husband and I

desperately want a child) I actually was told after this RAI, I

should be able to have children after waiting at least 6months. Now I

am scared. Please give me some other examples of potential problems

of having this done. I don't have time to try to read all of the old

messages. In case you need to know my uptake level, it was very high

at 78 (24 hour). Good Luck to you all. It is so nice to have support

like this. I just feel like I am 100% NUTS! I suffer with almost

every symptom on the list.

[Guest guest]

,

RI will effect you in many ways.

Tap might not be for you.

You need to seek a second opinion.

Research other things before RI.

You control your body.

If it doesn't feel right, then don't do it.

May be someone wil send you 's page.

It may help.

Or someone may pop in here and talk about the fertility problems that

this procedure causes.

Thank god for my Indo.

she didn't pressure me.

She would just keep trying diference things.

She also incourages research.

Take care.

Do what's right for you.

Advocate for yourself.

On Sun, 24 Aug 2003 19:08:29 -0000 " michelerick1 "

writes:

> Hello Everyone,

> My name is Michele and I am a 33 year old female. I am scheduled for

>

> RAI tomorrow at 11:30am. I have been suffering with GD and HyperT

> (TSH .001) for over a year. Then I went into extreme HypoT (TSH 108)

>

> after not responding correctly to the Tapazole no matter how we cut

>

> down the dose. My Dr. is nice but he just doesn't move fast enough

> or

> tell me important things. (sounds like many of you are having hard

> times finding a good ENDO.) After browsing some of your prior

> messages, I am wondering why no one has told me about any side

> effects or potential problems after this RAI treatment. I am married

>

> with no children yet* (yet is the key word since my husband and I

> desperately want a child) I actually was told after this RAI, I

> should be able to have children after waiting at least 6months. Now

> I

> am scared. Please give me some other examples of potential problems

>

> of having this done. I don't have time to try to read all of the old

>

> messages. In case you need to know my uptake level, it was very high

>

> at 78 (24 hour). Good Luck to you all. It is so nice to have support

>

> like this. I just feel like I am 100% NUTS! I suffer with almost

> every symptom on the list.

>

>

>