Re: thyroid uptake test - Laurie

[Guest guest]

Hi Laurie.

I hope we haven't overwhelmed you. Please keep us posted as to what's

happening with you.

Nothing I can really add. The archives here are overwhelming but if you

do have time, you will see the occasional newbie post of someone

considering RAI, then loads of responses with something like DON'T DO IT

in the subject header.

Truth is, you'll make better use of your computer time studying the

homepage links (letter to newly diagnosed, letter to family, 20 annotated

reasons not to have RAI, etc.) and the other boards and information sites

already suggested.

The main thing I want to stress is that an overwhelming majority of the

people who've had RAI regret it. Even the people who are doing well

regret that they weren't made aware of their options (anti thyroid drugs

[ATDs] and surgery). For those who truly can't tolerate ATDs a very

skilled naturopath or holistic MD can administer herbal remedies - this

bears looking into if ATDs are TRULY not an options. And I can think of

one very intelligent person who did research RAI thoroughly and still

opted for it (and I don't think he would have had he been a she) and is

now fighting for the proper bloodwork for the best thyroid hormone

supplement. BTW, about thyroid hormone substitute, if your dr. made it

seem like a breeze - " One little pill of synthroid fits all " - he would

not be a good dr. to go to post RAI. People who've had RAI have a very

tough time in many cases getting the right dose or combination of hormone

substitutes.

So the question is, assuming you have a true diagnosis of Graves, and you

need the TSI antibody blood test for that, or, even assuming that you

are seriously hyperthyroid enough to need treatment and it isn't Graves,

how do you buy the time you need to research this? Simple enough: Tell

your doctor you want to go on ATDs. It used to be common practice to go

on ATDs before RAI to stabilize the thryoid and reduce the risks of

various post RAI complications but very few endos bother with it. Your

endo might still decide to humor you and do it. Then, once you see how

well the ATDs are working, insist on staying on them.

About success on ATDs: I posted an overview on ATDs you may want to share

with your doctor at the end of February this year. I would recommend

studying it carefully. Please share your lab results with us, the ATD

your endo prescribes, and the dosing instructions.

No, you don't want to be away from your baby for 10 days. And 10 days is

a minimum. And you would have to be out of the house because a baby is

too little to understand that you can't give yourself totally to him. You

do have other options. BTW, if by any chance you're in southeast Michigan

you can contact me off list so I can tell you which endos to avoid and

which to see.

Take care, Fay

P.S. Make sure you get copies of all your bloodwork and testing. Besides

treating yourself to a fun binder or folder for them, I would also get a

highlighter. You will be getting a lot of good info from all the sources

mentioned. With time everything should start to sink in. It did for me

and I'm much more the English-major type than science-type.

P.P.S. 80% of endos recommend RAI. It's enough to make one doubt one's

sanity, especially since hyperthyroidism can temporarily mess us up

emotionally , etc. Just realize that in this brave new world of 21st

century medicine, it IS possible for so many medical professionals to not

act in the patients' best interests. Please never hesitate to bounce your

thoughts off on us, ask any questions, whatever you need. I've been here

long enough to be able to tell you that you will not be steered wrong.

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[Guest guest]

Laurie,

In case you haven't been given the proper workup for Graves', or in case

you aren't aware of exactly which tests should be performed, here is a list

(and you can post it to us or on Mediboard for advice):

Free T4 (not Total T4, but FREE T4)

Free T3 (not T3 uptake, etc. but FREE T3)

TSH

TSI and TPO antibodies (if they want to do additional antibody tests, then

that's OK! I would also get anti-gliadin antibodies tested for celiac

disease, as those with thyroid disease are at high risk for gluten

sensitivity, and you don't need to have symptoms to have it, but can wind

up getting lymphoma)

Ultrasound (to see if there are any nodules)

AND...if you know by now you are headed for ATDs (medication), you should

have them run a CBC, WBC, liver function tests and kidney function tests,

to get a baseline, BEFORE you start the medication. You also may want to

get a baseline for your eyes from an ophthalmologist who is familiar with

Graves' Ophthalmology (GO or TED) -- you needn't do this before starting

the meds, tho.

That's it! Please keep copies of any and all lab results in a binder.

Best wishes,

[Guest guest]

Hi all,

Just an observation.

May be someone could explain things like ds, ATD, and other buzz words

that we just shoot off.

For people who are newbies, like lauri may be a little overwelmed, and

confused.

I know I was when I first joined this list.

as a newly diagnosed person, you hear things like remission etc. etc.

Then these words come out, and then you are overwelmed even more.

I can remember feeling very confused and scared.

I even stopped reading the list for a while, and eventually lef.

Just a suggestion.

Take care and have a good day.

R. Green

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The best thing to hit the internet in years - Juno SpeedBand!

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