RE: Terry...may I ask a question???

January 29, 2002

Hi Ruthie,

The lady you met, did you ask her if she very slowly tapered off the Tap,

which I keep

reading is the best way to do it. Or did she just stop it, cold turkey , which I

see

people have doctors have them do, and then the hyper returns. Thus my

exceedingly slow

withdrawal of my PTU.

And I agree with you that 2 months is way too soon to judge. I think two years

would be a

better time frame to see how it has gone.

My doctor has a bunch of patients on ATDs for 10 and 15 yr. , so my thinking is

that if my

brandy new remission status changes, ATDs are still my best choice. Especially

now that I

know so much more about labs, nutrition, life style....mostly being able to

judge my own

labs now and know what is right for me.

I sure am curious about how she went off of the Tap.

-Pam-

January 29, 2002

Hi Ruth, I know two people who have had RAI for Graves and are doing

very well at the moment. The trouble is there is no way to predict who

will do well.

January 29, 2002

Hi Ruth, I know two people who have had RAI for Graves and are doing

very well at the moment. The trouble is there is no way to predict who

will do well.

January 29, 2002

Hi Ruth, I know two people who have had RAI for Graves and are doing

very well at the moment. The trouble is there is no way to predict who

will do well.

January 29, 2002

Hi Ruthie-

Your husband is right in that the people that are well don't generally

report on how they're doing. However, the people that don't do well don't

generally report either.

There are people that want to know about RAI who report that they are doing

well after they have it on these boards. Then they disappear. So it's not

as unbalanced as your husband thinks. I never did well after RAI but didn't

go to these kinds of boards until I was 11 years post-RAI. So who knows?

It seems that you can find a thesis supporting whatever conclusion you want

regarding RAI.

My husband treats many post-RAI patients. Some do well. Some do not.

Considering what he's seen, he would not recommend it. It's a gamble. One

that I lost and he has to live with.

Take care,

> Hi Terry...I am so glad to hear you are in remission...I am optimistically

on my way there too. I was so excited yesterday when I heard a stranger say

something about finally being off Tapazole. I went right up to her( being

that she is the only in-the-flesh person I've met with GD other than

myself.) She said she responded well to the Tap and was on it for 2

years...but every time she tried to come off of it completely, she went

hyper again so she recently had RAI...2 mos. ago maybe. My question is...did

this happen for you as well( not the RAI, but the going hyper when coming

off the ATD)..is that why I think I heard you were on the ATDs on and off

for 7 years? She was maybe in her mid 50's...I think I've heard age is a

factor too, but I was very bummed to hear this news..and though I would

never have the RAI done.....can one stay on the ATDs indefinitely? Still

hoping for remission...been on ATDS for 13 mos. Another question for

anybody....Have any of you heard of anyone being happy long term with their

RAI choice. She was all bubbly and happy about hers and said the only

adverse reaction she noticed was swelling of her gums. She is only a couple

of months into it though. My husband thinks that this group only hears the

negatives and that the people happy with their treatment and their outcome

don't need this support...he comes from a background of thinking the Drs

always know best and he and his family went to the Dr for every cold and

sniffle. I grew up with a Nurse mom who never took us to the Dr and wanted

our own immune systems to fight whatever we had. I rambled on again..but

thanks in advance for answers to questions..

> Ruthie

January 29, 2002

Ruthie,

In my case, I resisted taking ATD's for the first year or so, did only

Chinese herbs. That got all messed up when we went to Europe for 3 weeks,

couldn't take my usual herbs which I had to brew fresh every 2 days, so took

powders--and one of the most important herbs for me didn't come in powder

form. Once I got back, I went on ATD's and remained on them for several

years (have a few regrets about not keeping a diary, my memory is not

great). Resisted the push for RAI, my doctor said the same thing your

husband did, but I am and have always been very, very leery of any

radiation, even dental xrays or mammograms. So, I persisted in resisting.

Anyway, I didn't find this group or do much research for a very long time,

just did my bloodwork every 3 months and reduced/increased dosages as the

endo said. As time went by, I got to 5 mg. per day, and at a certain point

(fuzzy, fuzzy was my brain...) the endo told me to stop. Stayed in remission

for a while--but then got stressed and not really being as aware as I should

be of symptoms, went way overboard hyper again, back at the beginning, on 40

mg. a day.

Anyway, this time I got serious, reading and studying and learning from this

group, and finally got through my numb skull what all those numbers meant,

it took forever for that info to filter down to the level where I actually

had an understanding of it. That's when I started the symptom list business,

really because I KNEW I had to control what happened to me, needed to be

aware of all the symptoms, all the possibilities, and instead of listening

to the doctor, listen to my own body. The list turned out to be invaluable

in tuning me in, letting me focus on something real (symptoms) instead of

just numbers. Much more how my brain works.

As I developed more sense of the signposts of how I was, I found myself much

more able to determine my own dosage. For about the last year, the endo has

left the prescription at 15 mg. per day, I've filled it and taken a

gradually smaller amount of the stuff, the decreases dictated by my

beginning to notice hypO rather than euthyroid symptoms. Many of the drops,

I confess, came after I was probably hypO for a week or two--both because

the state is hard to identify when one is in it (the brain fog thing), and

because I had to learn that THIS is hypo, having only been hyper before.

Test numbers did not necessarily support that conclusion, but mostly he

tested TSH only, and we all know how terribly meaningless it can be.

I had (at Elaine and Jody's urging) a bit of a run-in with my endo last

August, asked--demanded, really-- that I get my antibodies tested. He deemed

it unnecessary, but ordered the tests. Results were virtually negative,

antibodies extremely low. So I knew (despite my ****TSH never going up, at

that point, past <0.01) that I was getting closer to remission. Then, like

magic, TSH started to rise, getting all the way up to .32, 2 tests ago.

Highest it's ever been. So anyway, longwinded as I am being I hope I'm

helping--anyway, every time I felt hypO I decreased the dosage. When I got

down to 5 mg., I was determined to decrease slowly rather than just go off

again, in hopes that I would gently ease into a remission that would last.

So I dropped my dose to 3.75, and a month later when I felt those

now-familiar logy, braindead feelings, to 2.5, then a month or so later to

1.25--that's 1/4 of a tiny pill by the way--and finally, just a few days

before my last endo appointment, I felt like I simply couldn't force another

1/4 pill down my throat, that I had to stop--so I did.

My last bloodwork was only another TSH (sigh) plus liver panel, and TSH had

gone down a bit, to .25, but somehow I've been fine, just totally fine. My

pulse is mostly between 68-76, I sleep pretty good, and I have had a decent

but not great energy level. Only problem is I've gained 5 lbs., and been

back to being hungry much more than I was. But, along with that I have been

ever so slightly constipated, so I don't think it's a hyper thing. I figure

if anything, it's survival mechanism for winter. It's been quite cold for

California, down in the high 30's at night, low 50's daytime--which ain't

much I know (Jody, you're probably laughing your head off right about now),

but the way these houses are built, it's darn hard to stay warm.

Anyway, I've had maybe 3 incidents of fast pulse/weakness, each lasting

about 1/2 hour or so, then abruptly ending, since December 19th. I'm

thinking about calling the endo and asking him to call in early labs, just

so I can see how I am doing.

The final thing I need to still emphasize, is that throughout all of this

I've taken Chinese herbs daily, and they do smooth things out, from what I

can tell. Although my life is far from stress-free, and I know that all it

would take is some severe stress-incident to get me going again, I feel

pretty confident that this remission will last--at least for a while. But

not confident enough, that if I were to take a trip, I would leave my

methimazole bottle home!

Hope this longwinded novel helps!

Terry

>

> Reply-To: graves_support

> Date: Tue, 29 Jan 2002 16:42:41 -0600

> To: <graves_support >

> Subject: Terry...may I ask a question???

>

> Hi Terry...I am so glad to hear you are in remission...I am optimistically on

> my way there too. I was so excited yesterday when I heard a stranger say

> something about finally being off Tapazole. I went right up to her( being that

> she is the only in-the-flesh person I've met with GD other than myself.) She

> said she responded well to the Tap and was on it for 2 years...but every time

> she tried to come off of it completely, she went hyper again so she recently

> had RAI...2 mos. ago maybe. My question is...did this happen for you as well(

> not the RAI, but the going hyper when coming off the ATD)..is that why I think

> I heard you were on the ATDs on and off for 7 years? She was maybe in her mid

> 50's...I think I've heard age is a factor too, but I was very bummed to hear

> this news..and though I would never have the RAI done.....can one stay on the

> ATDs indefinitely? Still hoping for remission...been on ATDS for 13 mos.

> Another question for anybody....Have any of you heard of anyone being happy

> long term with their RAI choice. She was all bubbly and happy about hers and

> said the only adverse reaction she noticed was swelling of her gums. She is

> only a couple of months into it though. My husband thinks that this group only

> hears the negatives and that the people happy with their treatment and their

> outcome don't need this support...he comes from a background of thinking the

> Drs always know best and he and his family went to the Dr for every cold and

> sniffle. I grew up with a Nurse mom who never took us to the Dr and wanted our

> own immune systems to fight whatever we had. I rambled on again..but thanks in

> advance for answers to questions..

> Ruthie

>

January 30, 2002

Ruthie,

I had the same question about RAI -- are we just hearing the bad stuff?

There is probably some truth in that statement. People who are not having

any problems, in general, don't join support groups. Why would they? I try

to keep that in mind when I get so frightened by everything. I really do

think that most people are fine with the RAI (at least for 40 years or so!).

Think about how many people have it done! I did a frantic search for

" positive " experiences with RAI a few weeks ago. I did find celebrities --

Gail Devers and Ben Crenshaw , and possibly Ripken, but she hasn't

disclosed her treatment anywhere that I can tell. I also posed the question

to the NGDF BB, and got a LOT of positive responses.

Now, does that mean I'm going to do RAI? Probably not. Here's why: with

RAI, the thyroid continues to die slowly for sometimes years. That mean

years of trying to get your replacement dose right, and I'm not willing to

go through that. I'm not willing to gain weight, and I think my chances of

that happening are much greater with the RAI because of that fluctuation in

levels. Also, there is at least a temporary increase in antibodies after

the RAI, which, in about 15% of the cases, causes a worsening of the eyes.

I'm also not willing to take that chance. And, I fully intend to live to be

100. I'm 37 now. I think with RAI, there is an increased chance that I

would get cancer. I think it would take 30, 40 or 50 years to happen, but

that would be in my projected lifetime, and that's not acceptable to me

either.

Now, from my understanding, and I'm going to discuss this with my new doctor

(yeah!) with surgery, you have a fixed amount of thyroid left (or none if

you do a total), and it is much easier and faster to get your replacement

hormone right. Also, you are pretty much guaranteed to have some

functioning thyroid left with a sub-total, and I'm with Caroline on that --

having some natural thyroid function left has got to be better than relying

on a synthetic, that couldn't possibly do everything that this amazing body

was designed to do so perfectly. And, I've heard, but it hasn't been

confirmed, that antibodies all but disappear after the surgery.

I'm still taking methimazole, but I am getting frustrated. It's only been

six months, but I feel like crap most of the time, and my eyes are getting

worse. They haven't popped out, but I have awful dryness, and itching, and

burning, and they're always bloodshot, and I occasionally have stabbing

pains in them. I'm trying to keep from jumping into anything right away,

but it is hard. When I see my new doctor, I'm going to get his opinion on

whether I am really wasting my time with the ATDs, or if I should continue

to try for remission for a while.

Just my thoughts,

Holly

Terry...may I ask a question???

Hi Terry...I am so glad to hear you are in remission...I am optimistically