Re: Lab too quick to treat??

[Guest guest]

Amy,

Welcome. I know this can be a confusing time. I was there a few months ago

myself. It can be overwhelming at first, but once you start learning about

this disease and its treatments, you will feel like you are on solid ground

again.

As for the antibody test, was it a TSI (thyroid stimulating

immunoglobulins) test? There are various antibody tests. TSI is specific

for Graves'. You say " anti thyroid, " which doesn't tell me which antibody

test that is. It may be a TPO-Antibody test. In which case, I would

recommend that you get the TSI test for clarification, as until you do,

your diagnosis is in question.

Are you familiar with the different treatment approaches for GD? If not,

then I urge you to read, read, read all you can about them. In the archives

of the site for this group, you will find tons of info. In addition, go to

the Files section http://groups.yahoo.com/group/graves_support/files/ ,

which has an open letter to the newly diagnosed, by Pam Brisse, as well as

a lot of other important info. Mediboard.com is a great place to start --

read the Thyroid Awareness 101 thread

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

Please don't go forward on RAI, at least until you have thoroughly

researched your options. It is permanent, irreversable, and 30% of people

who have it done don't do well (triggers or worsens thyroid eye disease,

amongst a whole host of other problems). I have decided I will never have

RAI. I would have even refused the RAI-U scan had I known at the time to

request an ultrasound instead. I am on medication (PTU, which is an ATD, or

antithyroid drug), and a very low dose, after only about 3 months (I have a

mild case).

Sorry I don't have time to go into more right now. Please keep posting, and

get all your questions answered.

At 12:05 PM 8/29/2003, you wrote:

>There is no history of any thyroid condition in my

>family and all previous blood test were normal

[Guest guest]

Plus, Amy, if you don't do well on ATDs during the 18 months, you can

always go RAI.

After I spoke to my doc three weeks ago, I was really scared of ATDs.

But I feel fine on them. My itchy legs are healing and not itchy. I

don't have bad side effects yet, knock on wood. But I'm sure I'll have

to fool with the med dosage.

I think that, long-term, ATDs are a bit of a hassle... everyone will

disagree with me! But to me people seem very up and down, always at

the mercy of lab tests... but what's 18 months? I would feel foolish

not giving the drugs 18 months.

Also, were you on prednisone for a long time? I'm looking for people

who were and then were diagnosed Graves.

Jae

[Guest guest]

Plus, Amy, if you don't do well on ATDs during the 18 months, you can

always go RAI.

After I spoke to my doc three weeks ago, I was really scared of ATDs.

But I feel fine on them. My itchy legs are healing and not itchy. I

don't have bad side effects yet, knock on wood. But I'm sure I'll have

to fool with the med dosage.

I think that, long-term, ATDs are a bit of a hassle... everyone will

disagree with me! But to me people seem very up and down, always at

the mercy of lab tests... but what's 18 months? I would feel foolish

not giving the drugs 18 months.

Also, were you on prednisone for a long time? I'm looking for people

who were and then were diagnosed Graves.

Jae

[Guest guest]

Jae said:

" Plus, Amy, if you don't do well on ATDs during the 18 months, you can

always go RAI. "

True Jae, you could. Chances are though, if you do the ATDs right, you won't

need to make another treatment choice. This list is great about doing ATDs

right - and how to get your doctor to treat you right on them - how to wean

off them slowly so you don't shock your system back into hyper - etc. etc. -

so you do have the best chances of getting into and staying in remission.

Sometimes this includes having to make some new lifestyle or nutrition

choices, and stress reduction and maybe even some alt med stuff... but these

things all make your chances of remission and staying in it that much higher

It's too bad endos don't think food (iodine in particular) affects us as

much as it does. If you do ATDs but continue with a high iodine diet, you

are not going to do as well as others will, for example. All the little

things you can do to help yourself will add up to better chances of

remission - and docs just don't tell you about those things.

And I just don't think it's as cut and dry as " I'll take ATDs for 18 months

and if it doesn't work I'll do RAI " . What happens if at 18 months your

numbers are in the normal ranges but you are still taking a maintenence dose

.. you wouldn't give up then, would you? Because there are doctors that will

try to convince you that 18 months is the maximum you can take the drugs -

and it's not true.

And also just want to point out, it's not just a choice between ATDs and RAI

There are lots of Alt Med options that work and there is always surgery if

all else fails.

Pam B.

In remission after 1 year of Alt Med.

[Guest guest]

Jae said:

" Plus, Amy, if you don't do well on ATDs during the 18 months, you can

always go RAI. "

True Jae, you could. Chances are though, if you do the ATDs right, you won't

need to make another treatment choice. This list is great about doing ATDs

right - and how to get your doctor to treat you right on them - how to wean

off them slowly so you don't shock your system back into hyper - etc. etc. -

so you do have the best chances of getting into and staying in remission.

Sometimes this includes having to make some new lifestyle or nutrition

choices, and stress reduction and maybe even some alt med stuff... but these

things all make your chances of remission and staying in it that much higher

It's too bad endos don't think food (iodine in particular) affects us as

much as it does. If you do ATDs but continue with a high iodine diet, you

are not going to do as well as others will, for example. All the little

things you can do to help yourself will add up to better chances of

remission - and docs just don't tell you about those things.

And I just don't think it's as cut and dry as " I'll take ATDs for 18 months

and if it doesn't work I'll do RAI " . What happens if at 18 months your

numbers are in the normal ranges but you are still taking a maintenence dose

.. you wouldn't give up then, would you? Because there are doctors that will

try to convince you that 18 months is the maximum you can take the drugs -

and it's not true.

And also just want to point out, it's not just a choice between ATDs and RAI

There are lots of Alt Med options that work and there is always surgery if

all else fails.

Pam B.

In remission after 1 year of Alt Med.

[Guest guest]

On Fri, 29 Aug 2003 09:05:04 -0700 (PDT) amy saullo

writes:

> There is no history of any thyroid condition in my

> family and all previous blood test were normal

It's useful to know family history. In my case, with no family or

personal prior history, it looks likely I had full-blown GD due to

post-partum hormones and went into remission fairly smoothly on ATDs and

with weaning my baby.

I have a friend who's pretty much in your situation - numbers that show

hyperthyroidism but no real symptoms besides, in her case, goiter and

itching. Interestingly, she never felt different when on ATDs even when

her Free T4 was at the lowest normal range. Most people feel hypo at that

point, or at least a bit different.

Her endo wanted her to have radioactive iodine but since she was so

asymptomatic she opted for ATDs, the most benign of the traditional forms

of treatment. She never needed or took beta-blockers. One thing to be

aware of is a tendency of drs. to rely so much on the TSH that they'll

keep you at an inappropriately high dose for an extended period of time.

(They must teach this in endocrinology studies because I've met several

people who've been kept at 20 mg. Tap/day or 200/PTU for far too long.

Or, who were recommended to do so but were better informed and refused.)

I would insist on ATDs over RAI. You'll probably be started at a potent

dose such as the one I mentioned but not as strong as most of us start

at. The key is learning what the appropriate bloodwork is and gradually

reducing your dose.

Take care, Fay

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