Holly

March 6, 2002

Hi Holly -

Thanks for sharing this with me. You're right it sounds like all the " usual "

reasons I've already read or heard from other people. Reason 1 and 2 seem

like not really an issue to me. Reason 3 is the only one that really

concerns me, too. I have some statistics somewhere on the recurrence rate

and it was rather low, particularly with a total thyroidectomy (duh!). But

even with a subtotal, the recurrence rate didn't seem all that high, and I

think I remember it was more over a period of like 10 years or more.

>This is a real issue, as I've discovered people who have

>had this surgery and had symptoms return. One of them was after 20 years,

>which I think I could handle. I'd be 57 after 20 years, and not as

concerned

>about developing cancer in my lifetime if I chose the RAI then. But the

>other was in a relatively short time after the surgery. Of course, my

>understanding is that some of the thyroid remains after RAI as well. The

>thing is to have enough of the thyroid removed so as to lesson the chance

of

>that happening.

Boy, I tell you, your thought process in making this decision was so

identical to mine - I knew exactly what you were saying! It was like you

were reading my mind! I think the decision to do RAI is definitely different

when you take age into account.

>But it is

>an option, and possibly the best option for some people, and I think it's

>unfair for us to completely scare people away from it. I've seen that

>happen over and over as new people join our group. There are people out

>there who are not good candidates for surgery because of health problems or

>allergies to anesthesia. Or they're just plain terrified of surgery. They

>might also be unable to tolerate ATDs. Or they might not respond well to

>the ATDs and suffer unnecessarily for years when the RAI could have gotten

>them back on track again. I do know that some people have the RAI and go

>on to live healthy, productive lives. People do make an informed choice to

>have it. It isn't always just shoved blindly down our throats. Granted,

it

>is most of the time, but not always.

Amen to that. I don't necessarily think people are trying to " scare " people

out of having RAI, I think it's more a matter or urging them to give more

thought to the decision and at least find out about other options. And if it

takes telling people all the bad things that have happened to them since

having RAI to make them stop and think, well maybe that's better than just

jumping in blindly and having to regret something you were pushed into

doing. I think it's too often the case that a doctor present RAI as the

" only " option and like you said, patients don't receive all the facts they

need to better make their own decision. I have to admit I was tempted to

have RAI because it sounded like it was the quickest and easiest solution,

and at that point, I just wanted to feel better sooner rather than later. I

think a lot of people can relate to that!

>I really sick of taking the ATDs, and I have to make myself keep trying

with

>them. I wonder if I'm making the right choice. I got my labs yesterday,

>and I'm now more hyper than I was when I started. This after being

severely

>hypo in November and December. I've basically wasted 7 months of my life

>suffering and worrying, and I wonder how long I should continue doing this.

>Carrying on with this disease is causing long-term health problems. I

worry

>about my heart. I worry that my mind is going to be permanently damaged.

>It's affecting my career. It's affecting my relationship with my daughter.

>If I die tomorrow, will it have been worth it to have " lost " these last 7

>months?

Oh, Holly, my heart aches for you - I have felt similarly! I am so sorry

you're more hyper - what's the doc doing? Increasing your dosage now?

Hopefully that will bring it back down! Don't feel you've wasted the last 7

months. I'm sure if you were able to ask you daughter if she thought it was

a waste, she wouldn't think so in the least! I know there are days that I

have been a total and complete b*tch to my kids and hubby and I wonder why

the heck they would want me around when I'm hyper. But then I chill out and

realize that it's not really me, it's the stupid disease and while the kids

may not understand that, they know that I love them dearly and that I'm not

always the evil mom! Just the fact that you're there with your daughter is

enough for her - much better than the alternative from her point of view,

I'm certain! I try and focus on the thought that I'm not only trying to get

better for myself, but for them as well.

If you ever need to talk about how " evil mom " shows up and disrupts your

relationship with your daughter, or just how it sucks to be a mom with GD,

or just feel like venting, feel free to email me!

It's going to get better one way or another!

-----

March 6, 2002

Hi . I haven't gotten my " letter " in the mail telling me what to

do. I called and got my results from the nurse and the doc hadn't looked at

them yet-TSH .004, FT4 3.15. In the meantime, I've increased my dose

myself. My resting heart rate is down from 120 on Monday to 80 today, so

I'm feeling better already. If I can just get myself in that normal range

for once, I might be able to hang in there long enough to see if I can go

into remission. Does anyone know, once you do get euthyroid, how long you

stay there on ATDs? Or is this too individual. I'd hate to get there and

start going up and down again. Frustration, frustration!

Holly

March 6, 2002