RE: Re: PRIVATE: graves list post-Re: Jay's question

[Guest guest]

I found this letter very irritating. OK it's been 17 years and they still

can't get it right.

There is such a thing as quality of life. I'm very sorry that I have to

depend on a doctor for the rest of my life at all times. If I wouldn't have

chosen RAI, I'd have a 30%-50% chance of not being dependent for the rest of

my life on a medication and what a physician decides is right for me (and

more of a chance partially).

Pooh on statistics. They don't mean much when you're one of the people that

don't fall into the numbers. And your entire family suffers because of it.

I hope you're luckier than me.

dx & RAI 1987 (at age 24)

> I am very curious to see 5-10 years from now, from this group that is so

antiRAI, how many will remain antiRAI.? Only time will tell.

>

[Guest guest]

So much for privacy.

[Guest guest]

Oops! I've been popping in and out today after being gone a while.

Ellie and Arthur are 7 1/2 mos old. They're beautiful children and I'm

thankful that I have them.

Take care,

dx & RAI 1987 (at age 24)

> P.S. ! How are the babies ? How old are they now ?

[Guest guest]

personally I'd prefer to go hypoT by my own means. I've

known that since the onset of finding out I have graves.

My dr told me that the thyroid can and does kill itself

off. It happens. I've been mismanaged on ATD's enuff now

to know how to get the results I need. And If I don't,

somebody does and usually has a suggestion. I just prefer

not to put Radioactive anything in my own body. That's

why we have these groups. Now, since you brought this

point up, hop on over to the thyroid HypoT board at

www.thyroid.about.com and see how many people are truly

feeling optimal being hypo. I've read those messages

enuff to know it ain't all champagne and roses either. As

for the anti depressants, well, many thousands are on

those too. I've had to take them for years for PMS. It

had nothing to do with my Graves/HyperT.

Sandy~Houston

On Thu, 28 Aug 2003 08:58:31 -0700 (PDT)

Mirela wrote:

[Guest guest]

Mirela,

I'd also like to hear from you 5 and 10 years down the road. From what I've

seen, (oh, where are those stats located?) people are decreasingly happy

with the results of RAI the farther along down the road they get.

It's true that we're all unique and different, and have different bodily

needs. Sometimes you make decisions that might not be right for another, and

you live with your choices. But if I put 1 bullet in a gun that holds 4 and

played Russian Roulette, you'd think me crazy. Yet the statistics for people

who have a bad outcome from RAI are something like 30%. Not even as good as

the odds above.

Also just out of curiosity, have you had your antibody levels checked? Do

you still have thyroid antibodies? I mention this because there are people

who post here who developed eye disease many years after RAI.

Terry

>

> Reply-To: graves_support

> Date: Thu, 28 Aug 2003 08:58:31 -0700 (PDT)

> To: graves_support

> Subject: Re: PRIVATE: graves list post-Re: Jay's question

>

> I am very curious to see 5-10 years from now, from this group that is so

> antiRAI, how many will remain antiRAI.? Only time will tell.

[Guest guest]

Re: PRIVATE: graves list post-Re: Jay's

question

QUOTE: " I am very curious to see 5-10 years from now, from this group

that is so antiRAI, how many will remain antiRAI.? Only time will tell. "

And time has told for me! I was diagnosed 6.5 years ago and still have

all my thyroid. Since being under control with ATDs I have not had any

rage or emotional problems. I also went off medication for 3 of those

years. Yes, I became active again but it was much milder this time

because I knew early on what to look for before I got totally out of

control. While on ATDs I have NOT needed a beta blocker and my resting

heart-rate is 60-70 beats per minute. Certainly normal. The only

" active " symptom I really had this active phase was my eyes were puffy

and I had some hair loss.

Our treatment options and choices are very personal decisions. I did a

lot of research before I settled on my treatment of choice. I chose what

I felt would be the safest, least invasive course of treatment. That was

my goal, to leave as much of *me* intact as possible. I, like many on

this list, feel that RAI is not the best choice for treatment. This does

not, in any way, mean I think YOU made a wrong choice. Only YOU can

choose for YOU. But, I have seen the downside of RAI and feel that if I

can help someone see that it isn't as easy as most endos make it out to

be then I'm happy. This doesn't mean I don't support someone if they

chose RAI, I only want them to make a well informed choice.

So I am 6.5 years into my Graves disease and so far so good. I don't

feel ill, I don't look ill and someday when they find the cure for this

stupid and annoying condition I'll have all my original equipment left

to work with. I understand that for some people ATDs don't work, but

they work for more people than not. The problem is getting the drugs

administered properly and followed properly. Having an endo who will

listen to what the patient wants to do, rather than choose the treatment

for the patient, isn't always easy to find.

Mirela, I truly am HAPPY that you are happy with the choice you made.

But are you really happy? In a couple of your past posts you mention

having TED and needing eye surgery and that your TSH is 48! Wow that is

very, very hypo. And you were only on Methimazole for 6 months prior to

RAI. How was your monitoring when you were on ATDs? Were you, like so

many others, made hypo then hyper, hypo then hyper over and over again?

Were there any baseline liver function tests done before you started on

ATDs so your endo would know what was really going on with your liver?

Just having Graves can affect liver function all by itself never mind

the ATDs. What tests did your endo use to track your thyroid function

while on ATDs?

Okay, I've gone on long enough.

in MA USA

Graves since March 1997

Currently on 2 PTU tablets per day

Was in remission from 2000-2003

Will not undergo RAI

[Guest guest]

Hi again Mirela,

I did have rage before I took the ATDs but within a few weeks was back

to my old, easy-going self! The first two weeks after I was diagnosed I

was put on beta-blockers but was quickly weaned off them as the PTU

worked very quickly. First I was on PTU and then was switched to

Tapazole. I did not do well on Tapazole, I got an itchy rash so I was

put back on PTU. My heart rate when I was diagnosed was over 150 beats a

minute, but within a month of diagnosis I was off the beta blockers and

my heart rate was back to less than 80 beats in a minute.

Hope your TED keeps improving. Would be nice if you could avoid surgery!

in MA USA

Graves since March 1997

Currently on 2 PTU tablets per day

Was in remission from 2000-2003

Will not undergo RAI

RE: Re: PRIVATE: graves list post-Re: Jay's

question

,

Actually my last TSH results showed 8. Taht was last week. Yes, I am

happy. I would not want to leave thru the hell lived when I was on

Methimazole. TED is of a special importance to me, because of the chage

to my apearance. It did receed a lot compared to before RAI. I am not

satisfied with my eyes not being 100% back to normal . There is a

possibility to correct that with surgery. However, I don't have double

vision. I am glad your chosen treatment works for you for now. I am

glad mine works , too. Since the end of April my TSH went from 0.0001 to

8.Ft4 is normal. it is not a fast road to recovery, as it took me more

than 8 months while on ATD just to get to a normal level of FT4.,while

the TSH was totally suppressed.

Yes, I will check my antybodies and will let you know.

I am much happier now.

You may not be aware tha the symptoms of Graves Disease are not the same

for each patient. I am glad you did not have erratic behavior, or access

of rage, or fast heartbeats. I did all of that while on ATD.

[Guest guest]

Poohie indeed ~

Sorry you had to witness this. We know how those in the honeymoon phase of

RAI can be sometimes. But to post untruths addressed to a nice young couple

taking their time wisely in planning beginning their family to be, is

immoral in my very strong opinion.

They only asked for true facts, and for some reason this one person has

developed some kind of obsession in continuing to not be willing to learn.

That is sad to, because her numbers are not good and she is considering eye

surgery way too soon, without understanding the basics yet.

We are all willing to help her learn and understand so that she CAN get

better, and hopefully loose no more vision.

To be forced to deal with her misconstrued facts that she was told, we must

waste valuable time, that could be better spent on our continuing education,

and I do believe we need to get back to the business of educating and

supporting each other, in particular Corey , Joey and their future babies.

Are you kids still here ? :-)

Now this:

* I am very curious to see 5-10 years from now, from this group that is so

antiRAI, how many will remain antiRAI.? Only time will tell.*

I can speak for the five years now, and I volunteer Terry as our 10 year gal

Neither one of us are ever willing to have the vital gland for physical

and mental health , be controlled by any other human on this planet. We are

keeping our glands thanks.

-Pam L - ~sheesh~ got sucked back in again. :-(

P.S. ! How are the babies ? How old are they now ?

3 1/2 years Graves', TED, and PTU. Remission due to SLOW reduction of PTU

(despite an incompetent endo ! ), improved lifestyle, excellent nutrition,

herbs, and looking at the big picture.

Pills alone only help the symptoms. We must help our bodies to heal.