Re: Update on Jewel.

[Guest guest]

, has she had any testing done at all in the past yr? I certainly know

what that's like. I could tell that her mind and body are really taking a

beating. I just hope that she finds a way to do this. I know yours came

out well, on the right combination of meds, but I also know it takes a lot

of pain to get there. I know that not everyone does well on Armour-only. I

said that I had added back some T4 to that because I, as an individual,

cannot seem to get enough T4 out of that mix. That doesn't mean that I will

ever go back to a T4-only med because I really believe that the Armour has

exteme value for things that our own thyroids once had. I'm not advertising

for anyone, but if it ain't broke, don't fix it. I just got started at

making the changes less than 3 months ago, and I'VE been having all kinds of

trouble also. On top of that, I have to go to work and be exposed to

diseases and such that my immune system may not be able to handle,

etc....but I just keep thinking that the solution is soon coming. I poo-poo

the TSH test, but I believe that we very badly need the Frees testing. They

may not reflect EVERYTHING there, but at least we won't be guessing in a

wide-ranged confused way. I really believe that she may have some other

issues there, I'm wondering about the adrenals, other hormones, all related

to thyroid. I don't think that many have one without the other, especially

if we've been in the " twilight zone " for a matter of yrs, with no legitimate

help.

Tx

Update on Jewel.

> I wanted to let everyone know that I heard from Jewel overnight. She

> apologized for her outburst, although I didnt' feel it was needed. She's

> just so frustrated and she misunderstood what I was trying to say,

> sometimes things don't come out quite the way that I'd like. She's really

> feeling horrible and can't figure it out. She's even avoiding family now

> for fear that she'll blurt out something that she doesn't mean.

>

> She wants to stay to herself for a while and try to feel better.... I'm

> hoping that she'll stay in contact with me off list, less stressful that

> way, no group posts to deal with.

>

> Right now she's dropped out of all the support groups.

>

> Jewel has had such a horrible time. But hasnt' given up yet... She's just

> trying to reduce stress and try to figure out how to best care for

> herself...

>

> I thought you guys might like to know.... we're family...

>

> Topper ()

[Guest guest]

I've known her about 9 months maybe.... during that time she's been

pretty much self-medicating, no labs.... One of the problems is her fear

of hypo... this last time I'm so sure that when she took too much due to

that fear and went hyper again.... she did not reduce the dose long

enough to get rid of that stored excess... but she's still fixated on the

fear of hypo (it's different when your thyroid doesn't work at all and

then you have no meds.. it's a mortal fear, personally I won't go there

again).... She understands in her logical mind that her meds are off and

she needs to figure that out... but she's overwhelmed right now with

everything and needs to den up for a bit..... I've been there too.... you

just close down and focus on yourself... what you feel... what your body

is doing. It's like you have to get used to what it is doing because it's

so far out of whack that all your points of reference are gone.... Like a

drunk that can't touch his nose. Or standing up in a totally dark room

with nothing to hold on to.... or when you have a really bad cold with

your sinuses all plugged up and your balance is off... but it's

everything all at the same time... and you think your crazy, but you know

you're not and no one will listen....

She knows that I'm still here for her... and the group, too, when she's

ready..... We all understand, don't we? That she was just so

frustrated... she's not mad at anyone... just needs to sort it all out

again...

She's tried Adrenal off and on.. but then spikes hyper and doesn't know

what to do.... It is SO hard to do.... I consider myself really

lucky.... I had an endo that taught me so much about symptoms and signs.

She was a teaching doc and I was a guinea pig... she brought her students

in and I got to learn with them.... Without that knowledge of observation

and the experiences and research of you great folks in the groups and

your sharing and caring.... I'd be Jewel... or worse....

RAI for total destruction of the thyroid is supposed to be the best way

to go from the doc's point of view... just add meds until optimal levels

are reached... no messing around with cycling thyroids or those that are

gradually declining.... but gosh... after hearing that what I went

through is a common occurrence for those that have absolutely no thyroid

function and then have no access to medical care..... At least with

surgery there is always part of it left behind... they can't get it

all... That's why they can't do transplants yet.. they can't remove one

in one piece....

I know those of you struggling with Hashi's and cancer and all the other

ailments are going through h*ll too..... We all are... I'm so glad that

we've got each other to lean on.... I would have come this far if not for

everyone who's help with their suggestions and experiences on the way....

Topper () *who had RAI due to the negligence of a doctor that didn't

care*

On Sat, 20 Dec 2003 10:01:23 -0600 " " writes:

> , has she had any testing done at all in the past yr? I

> certainly know

> what that's like. I could tell that her mind and body are really

> taking a

> beating. I just hope that she finds a way to do this. I know yours

> came

> out well, on the right combination of meds, but I also know it takes

> a lot

> of pain to get there. I know that not everyone does well on

> Armour-only. I

> said that I had added back some T4 to that because I, as an

> individual,

> cannot seem to get enough T4 out of that mix. That doesn't mean

> that I will

> ever go back to a T4-only med because I really believe that the

> Armour has

> exteme value for things that our own thyroids once had. I'm not

> advertising

> for anyone, but if it ain't broke, don't fix it. I just got started

> at

> making the changes less than 3 months ago, and I'VE been having all

> kinds of

> trouble also. On top of that, I have to go to work and be exposed

> to

> diseases and such that my immune system may not be able to handle,

> etc....but I just keep thinking that the solution is soon coming. I

> poo-poo

> the TSH test, but I believe that we very badly need the Frees

> testing. They

> may not reflect EVERYTHING there, but at least we won't be guessing

> in a

> wide-ranged confused way. I really believe that she may have some

> other

> issues there, I'm wondering about the adrenals, other hormones, all

> related

> to thyroid. I don't think that many have one without the other,

> especially

> if we've been in the " twilight zone " for a matter of yrs, with no

> legitimate help.

>

>

> Tx

[Guest guest]

Thanks Topper for letting us know that. Hope Jewel feels better real soon. Can relate, have been having outbursts for the last two years. Can get pretty sticky.

Deborah

Maine

Update on Jewel.

I wanted to let everyone know that I heard from Jewel overnight. Sheapologized for her outburst, although I didnt' feel it was needed. She'sjust so frustrated and she misunderstood what I was trying to say,sometimes things don't come out quite the way that I'd like. She's reallyfeeling horrible and can't figure it out. She's even avoiding family nowfor fear that she'll blurt out something that she doesn't mean.She wants to stay to herself for a while and try to feel better.... I'mhoping that she'll stay in contact with me off list, less stressful thatway, no group posts to deal with. Right now she's dropped out of all the support groups.Jewel has had such a horrible time. But hasnt' given up yet... She's justtrying to reduce stress and try to figure out how to best care forherself...I thought you guys might like to know.... we're family...Topper ()

[Guest guest]

Sure can... Hope everyone remembers... that there is always some one here to lend a shoulder or ear.... for crying, screaming, howling, wailing or laughing....

On Sat, 20 Dec 2003 15:03:51 -0500 " son" writes:

Thanks Topper for letting us know that. Hope Jewel feels better real soon. Can relate, have been having outbursts for the last two years. Can get pretty sticky.

Deborah

Maine

[Guest guest]

Even though I haven't had RAI and still have partial function left, I've

still had those stumbling drunk type episodes, with indescribable " where am

I at " episodes, being so stiff that I could barely move, being so dull

witted that I could not answer my phone after being awake for 4 hrs---I know

all of you get the picture, more than the " norms " . I even had myself

convinced that it was anything but thyroid because I thought that it

couldn't be as simple (or complicated) or obvious as the nose on my face, or

rather the thing on the front of my neck. I do not think that every single

person should self medicate. I think that you have to know very intricate

details about drug halflifes, and so many other things there. And even at

that, I'm still stymied about my own. There are a couple of other tests

that I will get to, though not right away.

Tx

Re: Update on Jewel.

> I've known her about 9 months maybe.... during that time she's been

> pretty much self-medicating, no labs.... One of the problems is her fear

> of hypo... this last time I'm so sure that when she took too much due to

> that fear and went hyper again.... she did not reduce the dose long

> enough to get rid of that stored excess... but she's still fixated on the

> fear of hypo (it's different when your thyroid doesn't work at all and

> then you have no meds.. it's a mortal fear, personally I won't go there

> again).... She understands in her logical mind that her meds are off and

> she needs to figure that out... but she's overwhelmed right now with

> everything and needs to den up for a bit..... I've been there too.... you

> just close down and focus on yourself... what you feel... what your body

> is doing. It's like you have to get used to what it is doing because it's

> so far out of whack that all your points of reference are gone.... Like a

> drunk that can't touch his nose. Or standing up in a totally dark room

> with nothing to hold on to.... or when you have a really bad cold with

> your sinuses all plugged up and your balance is off... but it's

> everything all at the same time... and you think your crazy, but you know

> you're not and no one will listen....

>

> She knows that I'm still here for her... and the group, too, when she's

> ready..... We all understand, don't we? That she was just so

> frustrated... she's not mad at anyone... just needs to sort it all out

> again...

>

> She's tried Adrenal off and on.. but then spikes hyper and doesn't know

> what to do.... It is SO hard to do.... I consider myself really

> lucky.... I had an endo that taught me so much about symptoms and signs.

> She was a teaching doc and I was a guinea pig... she brought her students

> in and I got to learn with them.... Without that knowledge of observation

> and the experiences and research of you great folks in the groups and

> your sharing and caring.... I'd be Jewel... or worse....

>

> RAI for total destruction of the thyroid is supposed to be the best way

> to go from the doc's point of view... just add meds until optimal levels

> are reached... no messing around with cycling thyroids or those that are

> gradually declining.... but gosh... after hearing that what I went

> through is a common occurrence for those that have absolutely no thyroid

> function and then have no access to medical care..... At least with

> surgery there is always part of it left behind... they can't get it

> all... That's why they can't do transplants yet.. they can't remove one

> in one piece....

>

> I know those of you struggling with Hashi's and cancer and all the other

> ailments are going through h*ll too..... We all are... I'm so glad that

> we've got each other to lean on.... I would have come this far if not for

> everyone who's help with their suggestions and experiences on the way....

>

> Topper () *who had RAI due to the negligence of a doctor that didn't

> care*

[Guest guest]

For some, like me, without the money to pay out of pocket, or insurance

to see a doc or get meds via prescription..... we have no choice...

Oh... I take that back.. this state will give me medical assistance if I

meet any of the following:

Have AIDS

Become alcoholic

Become a drug addict

or get pregnant - I only need a doctors note saying my due date (they

couldn't answer my question: If I have enough money to see a doc to get a

note that says I'm pregnant... why am I here begging for thyroid?)

... I was also told not to drop dead on a city street.. if I do they have

to pay for planting me.....

I either self-medicate or go without... I've gone as long as three years

without. I became one of the walking dead..... eventually, after the body

pretty much craps out, you die.... so... I learn to take care of

myself... or save up for a casket...

Topper ()

On Sat, 20 Dec 2003 16:38:36 -0600 " " writes:

> Even though I haven't had RAI and still have partial function left,

> I've

> still had those stumbling drunk type episodes, with indescribable

> " where am

> I at " episodes, being so stiff that I could barely move, being so

> dull

> witted that I could not answer my phone after being awake for 4

> hrs---I know

> all of you get the picture, more than the " norms " . I even had

> myself

> convinced that it was anything but thyroid because I thought that

> it

> couldn't be as simple (or complicated) or obvious as the nose on my

> face, or

> rather the thing on the front of my neck. I do not think that every

> single

> person should self medicate. I think that you have to know very

> intricate

> details about drug halflifes, and so many other things there. And

> even at

> that, I'm still stymied about my own. There are a couple of other

> tests

> that I will get to, though not right away.

>

>

> Tx

[Guest guest]

Kathy,

I'm sure quite a few of us understand what stress can do to us... things

can get so confusing...

I went shopping with a friend yesterday... he loves brain teasers and

practical jokes. I was trying to do my stuff quickly... had a very

limited budget (11 bucks) and had several items that I HAD to get... I

was trying to get the best buys on the necessary items and then I might

be able to get something extra... I'm trying to read price tags, qty's,

etc and he's hitting me with his witticisms..... He got me so confudled

that I was writing info incorrectly and then he teased me about that....

I stood right there in the store and explained it to him.... he has a

medical condition called Peripheral Neuropathy and there are several

restrictions that he has, most noticeable is that he's losing use of his

thumbs.... I reminded him that I don't tease him about his thumbs...

don't tease me about not being able to keep my brain focused in two

different sections at once... he settled down.....

But I was still embarrassed... I can do math and comparisons quite well

in my head... and I'm also good at deciphering his metal puzzles... but I

can't do them at the same time... I'm not really sure if anyone could...

I guess the point that I'm making is that you are so sensitive to

limitations that it's really hits hard when you hit barriers...

..... does that make sense?

Jewel will be back....She's having a rough time, she knows that we're

here when she's ready.. that's the most important part, to me, anyway...

to know that there are others that understand and will be there when you

need them.... the definition of a friend..... Which is why I wanted you

all to know that I'd reached her and such.

Topper ()

On Mon, 22 Dec 2003 22:05:35 -0800 (PST) Kathy Kitzcat

writes:

>

> Thanks . I'm so behind on email right now, but

> hopefully now that I'm done with basket orders for the

> holidays I can get caught up and stay that way a

> while. I was reading Jewel's post and just about

> crying because I knew she'd misunderstood what you

> were trying to say. I was going to email her and ask

> her to stay, but I won't bother her now. I don't want

> to add to her stress. She's going through a horrible

> time right now.

> I'm still waiting on my test results to come back.

> It's been over a week now, but I'm hoping they are

> just running behind with everyone wanting to get

> things done before they have to start meeting a

> deductible again.