Re: I'm hyper again:(-help Elaine please

April 28, 2002

Hi Terry,

If you decide to ask for a mercury test sooner, ask for the TSI at the same

time. If you decide to wait, the TSI can wait for another month. Yes, iodine,

in amounts greater than 150 mcg daily and mercury in very small amounts, can

affect those of us with autoimmune thyroid disease. And 150 mcg is a very

small amount considering the normal fast food American diet provides about

1,000 mcg daily. Take care, Elaine

April 28, 2002

> Val,

>

> How did you deal with the fluctuations? Keep adjusting your dose, or just

> ride through the changes? Were you on Tap or PTU?

>

> Thanks,

It was hard. I was literally FREAKING out. Panicking like crazy. I

kept calling my endos office and they wouldn't bump up my appt. even

though I knew something was going on. Then I went to the ER at my

hubbys insistence one night about a week and a half into it. My resting

pulse was 129. I thought for sure I was hyper! I told the ER doc what

labs to run and I did it SOLEY for the purpose of proving to my ENDO

that I wasn't just being a whiner.

2 weeks later when I got more labs at the endo's I was leaning toward

hypo again, but the labs from the ER showed me hyper. And before that I was

hypo. There were GREAT differences all within a month or so. I was on

75mg's of PTU through part of it,then 50, and then when I was hyper in the ER

I was off of my PTU and then still off when at my Endo's I was leaning

again toward hypo.

I know it's hard to follow, but basically it went like this. On PTU

and euthyroid for a long time, then getting hypo, then off the PTU and

I got hyper for like a week, then bounced back to hypo and then

stable.

Many opinions about what happened that month and a half. I was

miserable and depressed. I know that sounds awful and not very

comforting Terry, but it's hard when you've been euthyroid to have a

freak out like that, so I know how you feel.

Since you've been weaning your dose like I did, and you were euthyroid

right? Maybe it's a similar type thing? I just don't know.

Grrrr! Enough to make you crazy huh? My endo said she'd never seen

anything like those fluctuations with being weaned off right before

remission, she said it was totally unusual. With all the stuff people

report here though, that our endo's have never heard of, I never

believe them when they say that anymore.

Val

April 28, 2002

> Val,

>

> How did you deal with the fluctuations? Keep adjusting your dose, or just

> ride through the changes? Were you on Tap or PTU?

>

> Thanks,

It was hard. I was literally FREAKING out. Panicking like crazy. I

kept calling my endos office and they wouldn't bump up my appt. even

though I knew something was going on. Then I went to the ER at my

hubbys insistence one night about a week and a half into it. My resting

pulse was 129. I thought for sure I was hyper! I told the ER doc what

labs to run and I did it SOLEY for the purpose of proving to my ENDO

that I wasn't just being a whiner.

2 weeks later when I got more labs at the endo's I was leaning toward

hypo again, but the labs from the ER showed me hyper. And before that I was

hypo. There were GREAT differences all within a month or so. I was on

75mg's of PTU through part of it,then 50, and then when I was hyper in the ER

I was off of my PTU and then still off when at my Endo's I was leaning

again toward hypo.

I know it's hard to follow, but basically it went like this. On PTU

and euthyroid for a long time, then getting hypo, then off the PTU and

I got hyper for like a week, then bounced back to hypo and then

stable.

Many opinions about what happened that month and a half. I was

miserable and depressed. I know that sounds awful and not very

comforting Terry, but it's hard when you've been euthyroid to have a

freak out like that, so I know how you feel.

Since you've been weaning your dose like I did, and you were euthyroid

right? Maybe it's a similar type thing? I just don't know.

Grrrr! Enough to make you crazy huh? My endo said she'd never seen

anything like those fluctuations with being weaned off right before

remission, she said it was totally unusual. With all the stuff people

report here though, that our endo's have never heard of, I never

believe them when they say that anymore.

Val

April 28, 2002

> Val,

>

> How did you deal with the fluctuations? Keep adjusting your dose, or just

> ride through the changes? Were you on Tap or PTU?

>

> Thanks,

It was hard. I was literally FREAKING out. Panicking like crazy. I

kept calling my endos office and they wouldn't bump up my appt. even

though I knew something was going on. Then I went to the ER at my

hubbys insistence one night about a week and a half into it. My resting

pulse was 129. I thought for sure I was hyper! I told the ER doc what

labs to run and I did it SOLEY for the purpose of proving to my ENDO

that I wasn't just being a whiner.

2 weeks later when I got more labs at the endo's I was leaning toward

hypo again, but the labs from the ER showed me hyper. And before that I was

hypo. There were GREAT differences all within a month or so. I was on

75mg's of PTU through part of it,then 50, and then when I was hyper in the ER

I was off of my PTU and then still off when at my Endo's I was leaning

again toward hypo.

I know it's hard to follow, but basically it went like this. On PTU

and euthyroid for a long time, then getting hypo, then off the PTU and

I got hyper for like a week, then bounced back to hypo and then

stable.

Many opinions about what happened that month and a half. I was

miserable and depressed. I know that sounds awful and not very

comforting Terry, but it's hard when you've been euthyroid to have a

freak out like that, so I know how you feel.

Since you've been weaning your dose like I did, and you were euthyroid

right? Maybe it's a similar type thing? I just don't know.

Grrrr! Enough to make you crazy huh? My endo said she'd never seen

anything like those fluctuations with being weaned off right before

remission, she said it was totally unusual. With all the stuff people

report here though, that our endo's have never heard of, I never

believe them when they say that anymore.

Val

April 28, 2002

Jody,

Your suggestion will be taken. Next labs, no seafood for several days. We'll

see if it makes any difference. Can't hurt, anyway! So many of these

subjects, mercury fillings too, have too many sides to the argument. I have

plenty of mercury fillings (that 6 month period when I tried out eating a a

" fruitarian " when I was 19, LOL! I got 14 cavities--my first 14, too--after

that) Anyway, the current fused plastics they are using instead, which I now

have several of since the originals are failing after so many years--what do

THOSE leach into our bodies? I haven't seen any studies at all. Bet there

will be though.

I am going to try taking my usual morning 3.75 mg. of methimazole, and then

another half-pill at night. Never have split the dose, but I think maybe I

won't end up flaked out on the sofa mid-afternoon that way. At least, that's

what I'm doing today--after talking to the endo tomorrow, we'll see.

Is it all in my head, or am I really feeling more hyper today? Was it all in

my head, that I didn't feel hyper yesterday? Self doubt Rules the day.

Terry

>

> Reply-To: graves_support

> Date: Sun, 28 Apr 2002 13:51:44 -0400

> To: graves_support

> Subject: Re: I'm hyper again:(-help Elaine please

>

> Hi Terry,

> You haven't failed at all! This disease has no rhyme or reason in how it

> flows and we all do the best that we can with whatever we are doing to feel

> better.

>

> I'm surprised you haven't noticed a difference with the seafood. Even with

> my thyroid ablated, I still have some function and when I go overboard,

> especially with shellfish, I can feel that old hyper buzz. Maybe next time,

> the 3/4 days before you have labs, you stay away from that and see what

> happens? Couldn't hurt. I think the one thing I would hold onto if I were

> in your position is that you don't feel hyper, so maybe something else is

> playing with the labs?

>

> Don't know, just guessing.

>

> Maybe going by more how we feel than the labs is better than letting our

> labs tell us how we should feel...I am so guilty about this too, especially

> lately. Try to take care,

> Jody

>

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April 29, 2002

Thanks to all for the encouragement!

I gotta say I did not expect those numbers when I called in today. I haven't

talked with the Dr. yet I would assume I would be cutting down the dose of

PTU and I had already cut back on the bugleweed due to the conversation last

week about it.

I kinda want to wait and see how long it will take the Dr. to call me. That

sounds trivial I know but I am kinda surprised he hasn't called me yet. I am

reviewing the hypo list regularly. The thing is I have been hyper for so

long that I'm used to it. I kinda like it. I actually don't feel a whole

lot different then before my numbers changed and you guys saw the labs. I

have to say I am very diet conscious (I have celiac disease, too) and I did

do some lifestyle changes since the first of the year. No Alcohol (I found

when I had it, it really wiped me out) I make sure I get enough sleep even if

it means a nap and I cut way back on caffeine, this one was really hard.

Oh, yea,, The STRESS has gotta go!!

thanks again

Jane

April 29, 2002