Question - Sassy

[Guest guest]

On Thu, 02 Oct 2003 04:01:33 -0000 " Stacie "

writes:

> I have a question to those of you who have had the RAI treatment.

Maybe I shouldn't be answering since I didn't have RAI. I'm in remission

for over 2 years following 14 months on Tapazole. If you do find a

pro-RAI group, here are some questions you should ask them for your own

clarity:

1. Do they have any regrets or specific points they wish they'd

researched more?

2. Are their numbers within the new normal ranges (the outer limit for

TSH is just over 3, not 5 as it was formerly)? You want to be sure people

aren't just putting up with feeling blah.

3. How easy is it to find an endo who really knows how to manage

hypothyroidism? Or do their endos reject the value of testing and

supplementing the T3 hormone, insisting on synthroid or bust?

4. What are their experiences with thyroid eye disease? Were they told

that if TED is already manifest before having RAI that RAI would likely

make it worse?

5. If anyone tells you they were on ATDs but they didn't work, did they

have a fair trial of ATDs, starting at a higher dose and very gradually

decreasing it, or were they arbitrarily jerked around, or given an

arbitrary cut-off date?

This is for starters. I suppose you'll have to frame your questions in a

non-confrontational way. The point is, that if you find that people

1. have regrets

2. are not kept at the best end of the ranges (low for TSH, middle to

high end for the T3 and T4)

3. have hassles getting frequent enough lab work and appropriate thyroid

hormone replacement

4. have difficulty with TED

5. never tried ATDs or weren't treated with them appropriately

any or all of the above, this should make you wary of RAI. Meanwhile,

while you take the time to research this, insist on ATDs. It's dangerous

to go too long without treatment of any sort and you have every right to

insist on this treatment while you make your decision. You know us well

enough already to know that we all hope that ATDs will be your final

decision.

take care, Fay

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[Guest guest]

> 3. How easy is it to find an endo who really knows how to manage

> hypothyroidism? Or do their endos reject the value of testing and

> supplementing the T3 hormone, insisting on synthroid or bust?

>

This is a concern of mine. My mother takes synthroid and she is dopey

and fatish, neither was a characteristic of hers before synthroid. But

you know those doctors look at numbers and if you fall into one, bingo,

you are well.

I just wonder how hard it would be to argue an endo into managing you

at a higher end of t3 or t4.

Jae

[Guest guest]

Hi Jae,

I have a young, fairly well educated endo with a great bedside manner but I

still had to argue with her for several months to get her to agree that I felt

better at the high end of the range. She didn't accept any of my symptoms as

proof the " normal " numbers were hypo for me (despite the fact that, for one

thing, the length between my menstrual periods changes along with my thyroid

levels). The only thing that convinced her was a test of my levels two years

before I developed acute Graves' symptoms. I feel so much better at the upper

end of the range than the lower end (like the difference between being in great

health and having the flu) yet both sets of numbers were normal. I've also read

lots of posts lately from people whose endos won't budge on this.

Best wishes,

----- Original Message -----

I just wonder how hard it would be to argue an endo into managing you

at a higher end of t3 or t4.

Jae