Learning from each other

[Guest guest]

Everyone,

With Topper's permission I'm excerpting here an email conversation she

and I had this week. it's long, but I think worthwhile.

As a bit of background I've had Hashi's for about four and a half

years that I know of, and have been completely untreated for almost

three and a half. This week past I had a nasty flare up and I am

starting to make a little sense of these. The first part here is an

excerpt from my journal:

to Topper (plus *journal)

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----------------------------

*I'm having moments of revelation, finally.

*So anyway I was talking to my friend Texas yesterday, and he said

*something off the cuff. I was highly distressed about something I was

*trying to do; he said I was panicky. And even as he started to

*apologize for not being able to think of a better word -- he felt like

*he was being insensitive to my situation--I went ah HA! I haven't had

*anything remotely resembling a panic attack since I was in the initial

*stages of diagnosis of the weirdness that is my

*thyroid/autoimmune/blood sugar stuff.

* . . . the past couple weeks, especially, I'm just WOO. not in a

good way, see. *But for some reason the susceptibility to a panicky

situation didn't occur

*to me, probably because I haven't had anything like that in

*sooooooooooo long.

~*~*Edit to add this thought. My numbers are better -- which means my

thyroid function is actually up, because my body isn't having to

stimulate it to produce as much hormone. But I have .... an

autoimmune disease that attacks the thyroid. So of course I have the

icky symptoms -- carpal tunnel, brain fog, weight gain, digestion

issues -- I'm willing to bet this is a flare up. I've never had

numbers pulled during a flare, but that would kinda make sense, you

know? Thyroid stops working, immune system mellows out. Thyroid

starts working (due to some very positive diet and exercise changes),

immune system freaks out.

*wanna bet me?

*No, actually, you don't.

************************************************************************

See that edit? Does that line of thought make sense? Does it groove

with what you know of Hashi's?

Just thought I would check with a couple folks who might know. It

seems to make sense but I'm in the middle of this ......... whatever

it is ............ and feeling icky.

*hugs*

I'm quiet; now you know why :-)

=========================================

Topper to

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-

Makes perfect sense... you said it exactly right.. with hashi's there is

an ebb and flow affect.. that cycle can be days weeks or months as it

works from good thyroid production and low antibodies and then back

around to high antibodies and low thyroid production...and yep.. that

causes anxiety and panic and 'icky' feelings.

(snip)

You do know that the ultimate result of Hashi's is the destruction of the

gland.... so it just irks me that your doc is letting you flap in the

breeze and not caring for you. has done a lot of research with her

hashi's ... keeping the gland function suppressed with adequate amounts

of supplemental hormone (like Armour) reduces thyroid function, cause

their is enough hormone in the system to keep TSH levels down.... and so

the antibodies don't build up to attack the gland.

She's noticed that she starts to feeling crappy when her antibody levels

start creeping up. She has labs run every three months... she's been

keeping a close watch on this....

Hang in there ... understanding what is happening is half the

battle.. and you've got us... you don't have to deal with it all by

yourself....

=======================================================

to Topper

---------------------------------------------------------

Thx topper.

I've never had anyone explain too much to me, so ........ trying to

really sort it out now since it looks like i'll be self treating for

at least a while

Haven't touched the stuff I bought, gonna exchange it and see if i

can't get just the regular thyroid sans other added stuff.

thinking .......... isn't the plan for hashi's to replace thyroid

function entirely, so thyroid shuts down and immune systems have

nothing to attack?

so if that follows, i should really be doing armour or similar anyway,

to replace as much of my thyroid function as possible, yes?

looks like i should get a thermometer .... can hunt through the group

for recommendations on that.

anyway thanks for being my sounding board, and confirming for me.

much much appreciated. forgive the bad typing, but i'm pushing it

typing anyway. :-(

=====================================================

Topper to

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Yep, suppressing the activity of the gland keeps the antibodies down,

it's the gland activity that triggers the antibodies to increase in

numbers and attack the gland. The problem is, though, that most docs,

especially Synthroid docs, don't understand that concept.. they don't

understand that it's gland activity the triggers the antibodies to

attack.

They keep getting the info that low TSH causes osteoporosis. That's not

exactly true. Low TSH due to use of Synthroid, while it increases

metabolic activity and can reduce hypo symptoms, it does not contain

Calcitonin. Calcitonin is produced by the thyroid gland and the

parathyroid glands. If the hormone replacement is done by using T4 only

synthetics the person has no way of taking calcium from the blood stream

and putting it back into the bones to keep them healthy. Calcitonin is

what allows our bodies to do that.

So if the doc does not understand the value of using natural thyroid and

the cumulative dangers of using T4 only synthetics he simply follows the

information that is passed along by the makers of the synthetics and

keeps TSH higher than what it needs to be, resulting in insufficient

hormone levels in the blood stream, hypo symptoms and for those with

Hashi's continued cycling of the thyroid gland/antibody battle.

In these cases, in what your doc is ultimately doing to you, if he knows

it or not, is the gland will continue to cycle until it eventually dies,

the goal of the antibodies is to kill the thyroid gland.

For you it means that you'll feel good at times then crappy again....

then good for a bit, then crappy again... and that will continue until

the gland dies.. then you feel crappy all the time... unless you are

given enough replacement hormone.

I hope that all made sense.... If not.. holler at me and I'll give it

another shot.

Have you looked at the web site? Do you understand the different

hormones, tests and meds? www.thyrophoenix.com/thyroid_101.htm is the

page we have set up that runs through all of that...

========================================================

That is the end of the conversation, but I thought the insight might be helpful.

in LA

[Guest guest]

Please forgive me, I'm 9 days late on this, but it has been hectic and also

fun around my house for the last week, what with Christmas, etc......Yes, my

goal is to keep my pituitary TSH suppressed, so that the thyroid won't be

stimulated at all. Now that doesn't mean that I'm yet at my full

replacement dose, and I may never be able to take the amts of thyroid that

some people here do, but Armour is very good at suppressing TSH almost right

away, I'm guessing because of the direct action of the T3 in it. I take it

now 5 times a day, as I can't seem to take any more than 30 mgs at a time

yet. It was upsetting to me that my TSH had risen to a .9 on November 1st,

so I upped another 15 mgs to 135 mgs Armour. It's been 2 months almost, so

I really need to test again at this point, IMO, since my dosage is starting

to get in the higher ranges now. The increments are small, and it's taken

me a yr to get just to this midrange dose, but it will be worth it. I'm

dogmatic, and I'll keep going til I get there. Hashi's is soooo tricky and

frustrating when there is still glandular and antibody activity. I think my

thyroid is probably just as stubborn as I am and just won't give it up, but

considering that this time, my Free T4 was again rock bottom and Free T3 was

barely midrange (last time was overrange!), on a lower dose, I'm guessing

that the gland is failing more and more during the last 2 or 3 yrs or so.

Someone on another site said that they didn't think it was necessary to do

antibody testing more than once in a lifetime, but I'm disagreeing there,

because I think it helps track the history of what's happening to the actual

gland over time. I think that when I started feeling my worst 4 or 5 yrs

ago is when all the high antibody activity started, and noone will ever

convince me otherwise. I felt fine on Levoxyl for 3 yrs, and I've been on

thyroid hormones altogether for about 11 yrs, so it was a gradual downhill

slide from that point onward. Stress and all kinds of things will help wear

it down.

Learning from each other

>

> Everyone,

>

> With Topper's permission I'm excerpting here an email conversation she

> and I had this week. it's long, but I think worthwhile.

>

> As a bit of background I've had Hashi's for about four and a half

> years that I know of, and have been completely untreated for almost

> three and a half. This week past I had a nasty flare up and I am

> starting to make a little sense of these. The first part here is an

> excerpt from my journal: