Re: clarification

[Guest guest]

> I do feel i need to clarify something. my endo is not by any means

> being pushy or anything on this. I was told the three options,

> surgery, which i imediatelly said no to (I am scared of surgery, any

> surgery LOL), meds or RAI. I asked what they recomend, and she said

> the RAI because they have the best results with it. she then told me

> to go online, do research and decide what is best for me and what i

> felt comfortable.

> I feel some of you have a endo that basically said RAI or nothing.

> mine is not like that, so i do want to clarify that. She even spoke

> to me about natural thyroid meds that are out there, don't remember

> the names.

Hi, Stacie,

Congratulations, it sounds like you did better on your first pick of endo

than most of us here!

I hope this doesn't come across as " jumping all over you " ; it's not intended

that way. If you're on information overload and can't deal with this rather

long message, please just skip to the last para - it's really the most

important part, and addresses just that.

I'm going to assume that you're American though I don't think you've told us

that, because it is my understanding that RAI is rarely presented as a

first-line treatment option outside of the USA.

I'm a bit surprised to hear that you know multiple people who tried ATD's

and found them ineffective. It might be worth your while to ask them what

that means; AFAIK it would be very unusual to have several randomly selected

Graves patients all of whom truly had poor results with ATD's. However,

since many or most American endos appear to regard ATD's as a short-term

" cure " for Graves, rather than a long-term maintenance plan (which is how

it's handled in Europe and Japan), it is quite possible that for some or all

of them, the drugs were working just fine, but they were told otherwise. The

following scenarios seem common:

1. Patient is doing just fine on ATD's, but hasn't gone into remission based

on antibody readings after an arbitrary time period (usually 18 mos.).

Doctor tells patient the drugs aren't working and it's time to do RAI.

2. Patient is doing just fine on ATD's, but after an arbitrary time period

the doctor weans them off the drugs (sometimes abruptly, which isn't even

weaning) without checking or paying attention to antibody levels. Graves

symptoms return; the drugs are declared a failure.

3. Patient does fine on ATD's, goes into remission, is weaned off the drugs.

At some later time the Graves becomes active again, at which point the

doctor declares the drugs a failure and recommends RAI rather than resuming

ATD's.

Also, some American endos don't seem to want to test frequently enough at

first to determine the correct dosage, and many focus in on some readings

while ignoring others, and also ignore symptoms reported by the patient.

I've experienced all three of these myself, and many others here have

reported similar experiences. Such poor monitoring may also contribute to

the " failure " of ATD's.

FWIW, RAIU - the " iodine panel " you mentioned - will serve no purpose until

and unless you decide to proceed with RAI, and it involves ingesting a small

quantity of radioactive iodine. You might want to hold off until after you

make that decision, both in consideration of a conservative approach to

exposing your body to any excess radiation without need, and wasting time

and money if you don't opt for RAI.

ly, given the mildness of your general symptoms AND your report of mild

TED (an important counterindication for RAI), I am surprised that your

doctor is even presenting RAI to you as an option at this point, never mind

a favored one. However, if you should decide to go ahead with RAI, it would

be wise to make sure that the doctor you proceed with seems to have a good

track record in calculating dosage, based on reports of patients they have

treated. (See if you can talk to other patients treated at least a year

prior.) In talking to them, as well as the others you say reported failure

with ATD's and " good " results with RAI, you might want to ask what

constitutes " failure " with ATD's, or " good results " with RAI. Are they

euthyroid (normal levels) and feeling OK, or are they on daily oral thyroid

hormones? Also, noting your age, if you have plans to start a family at some

point do check into the experiences of other women with pregnancy post-RAI.

In closing, I urge you to consider going on ATD's *for now* so you can see

how you fare on them while giving yourself time to more fully research and

think about RAI. All of this information probably seems confusing at this

point, and you may not feel you're in a good position to understand and

process it. If so, you're right! Learning about this complex new disease you

have and the implications of the various treatment options takes time.

Happily, from what you have told us you have the time to learn, process that

information, and then make well-informed decisions based on your own needs,

values and priorities. Use it to good advantage - you were only diagnosed

with this disease about a week ago, and there is a whole new world of

information that you now need to make important life decisions. Even if

completely untreated, your Graves will not inevitably worsen, and the odds

are it can be managed quite satisfactorily while you study up with ATD's,

which work well for most people while having a very low incidence of serious

side effects. You do not have to make a decision on RAI this week, this

month, this year. Don't let the expectations or wishes of others or a desire

of your own to resolve this " for once and for all " press you into a quick

decision. (Remember: ATD's or RAI, you will still have Graves disease.) Take

your time, gather information, then decide. Don't rush it.

Best wishes,

Jill