[Anonymous August 8, 1997 at 7:23 am Post count: 93172]

#1158339

Hi, Infomaniac:

I’m chuckling here, because I could use the same nickname. Anyway, welcome to the board.

Just a word of caution: This board is a support board, and we are here to listen to one another, debate issues (which we do, sometimes vigorously), and try to direct new Graves patients to sources of information that may help them. Our opinions are not necessarily the best way for you to figure out which treatment option is going to be best for you. There are medical considerations that have to be taken into account which NONE of us are qualified to make. There are some medical situations which will indicate to a doctor that one form of treatment may work better for you than another. And these are things you need to discuss with him/her. Most of what drives our discussions are the personal considerations that enter into the decision. Are we afraid of the radiation? Are we afraid of the side effects of the antithyroid drugs? How “quickly” do we want this episode in our lives over? Did we have bad results from the form of treatment that we chose? Keep that in mind as you read our posts. We cannot give you advice — or shouldn’t — about one treatment over another. We can relate our personal experiences about one treatment or another, whether it worked for us, or didn’t, but the ultimate decision has to be between you and your doctor. And everything I’ve read does indeed suggest that there is no hard-and-fast best choice for everybody. There are plusses and minusses to each of the options, and only you and your doctor can decide which one is best for you, medically and personally.

Good luck.

Bobbi

[Anonymous August 8, 1997 at 7:58 am Post count: 93172]

#1054294

Hi. I’ve been reading some of the group’s earlier posts. I’m glad to
see so much interesting and good information, especially about eye
problems.

I get the impression from the posts I’ve read that anti-thyroids should
always be tried to the remission time-limit before trying RAI? Previous
info I had seen had implied that both courses were equally good
alternatives, but people on this list don’t seem to think so.

Also, if a person doesn’t seem to have any eye problems, would it be
necessary/advisable to have that confirmed by a knowledgeable
ophthalmologist before trying RAI?

Also, I get the impression that the Mayo Clinic is THE place to go if
one ever did have problems, that they are expert’s on Graves’ diease?

Also, what is the best resource to obtain up-to-date information on
surgical technicques that is written in a form that someone who is
educated but not a physician can comprehend?

Sorry about asking so many questions, but, while I have done a lot of
reading, I would like to hear from people who have direct experience
with Grave’s disease. Thanks in advance for any info you can provide.

[Anonymous August 8, 1997 at 8:57 am Post count: 93172]

#1158340

“Did we have bad results from the form of treatment that we chose?”

Your question, which I quoted above, expresses my concern about RAI
after reading quite a few messages on this board. Basically, the
items I had found while researching made it sound like, “RAI–no big
deal. It’s been used for 50 years with no ill effects other than
the fact that it occasionally causes thyroid storm, mostly in people
who are elderly or in bad shape already.”

I found further info that said that if the patient had Graves’
eye disease, the RAI could make it worse but that that problem could
easily be avoided by a course of steroids for a month after the
treatment.

Then I start reading this bulletin board, and it seems as though many
of the people feel after the fact that RAI may not have been a really
good choice for them. Many seem to feel that the treatment is not safe
in terms of the amount of radiation exposure, that they were not
properly informed of the risks and possible side effects, and/or that
it affected the condition of their eyes (which, as I said previously, I
had read was completely preventable). This makes me wonder if the
research I had done yielded accurate information because the accounts
of RAI on this board are so different from the medical information
that I had previously read.

I guess my point is that, if the treatment is more dangerous than the
medical community is admitting, I think anybody would want to know that
fact and any associated details BEFORE they decide whether to have the
treatment or not. Also, one might want to discuss any pertinent concerns
with one’s doctor. Personally, if I believed my doctor had deliberately
withheld information pertinent to the decision, I would find a new
doctor.

That is why I am interested in everyone’s first-hand accounts of what
they think of the various treatments. I realise that no one who isn’t
a person’s doctor (or who isn’t a doctor at all) is qualified to tell
a patient what he or she should do regarding treatment. I apologise
if I didn’t state that well before.

[Anonymous August 8, 1997 at 10:38 am Post count: 93172]

#1158341

Unfortunately, even if it were true that the treatments are more dangerous that the medical professionals will admit…they are certainly better than no treatment at all!

As Bobbi pointed out, some of us are more afraid of one treatment than the other, for whatever personal reasons. If you are, then, looking for personal reasons here’s mine:

I’m on anti-thyroid meds. No problem, whatsoever now. The initial problem was that it required patience, a character trait of which I greatly lack! Since it became effective, I’m very happy with it. I’m afraid of RAI because it seems so final, I just can’t kill off an organ if there is hope to save it. RAI is to me the point of no return, the last resort. (I even tried to see if there were any ways to save my gallbladder instead of having it out..there aren’t :-}). I’ve never been really afraid of the side effects of the anti-thyroid meds because 1/4 of 1% of all users are said to have the serious effects according to Harvard. My doctor just monitors my blood regularly, checks my liver enzymes and keeps on top of things. I did have a rash on my torso and arms initially…but it turned out to be from sweating from being so hyper – not the meds!

On the other hand, when you are in the depths of hyper despair, RAI seems like a quicker fix…and it certainly is the best choice for a lot of people. It seems that there are factors to consider which only your doctor can make the best determination. I know a couple of women who had RAI decades ago, they are fine. Never had any of the problems you read on this board. I also know a woman who went into remission after going the anti-thyroid route and a decade later she is also fine.

I hope that you are able to make the best decision possible for your treatment, that you get to feeling normal again soon and have a healthy, happy life.

Glynis

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