test results(how do they look?)

[Guest guest]

Hi everybody,

I just got back from my endo appt. and got back my latest test

results and was wondering how they looked. I " feel " OK.I have had a

bit of a bloated tummy the last few days,but Not as achy, and it's

not as hard to walk up stairs as it was for me about 2 to 3 weeks

ago.

When I posted my last labs before these, and described how awful I

was feeling it was suggested to me that my T3F and T4F were probably

going too hypO for Me and I was feeling that.(MY tsh was.29 at the

time) So I described the feelings I had and she(endo) said she

doesnt understand why I would feel like that I was still hyperT. I

tryed to say that the T3F and T4F were slighter on the lower side

and I was feeling it.Well as usual I got the feeling that I p***ed

her off by knowing anything and was dismissed.Elchhh....ok so here

are the lastest...

as of 5/6/03

TSH 1.1 mIU/L range is .40-5.50

T4,Free 1.1 ng/dl range of .8-1.8

T3,free 283 pg/dl range of 230-420

labs collected on 4/7/03

TSH .29 (L) range is .40-5.50

T3,free 1.0 range .8-1.8

T4,free 288 range 230-420

This is the absolute highest my TSH has been in ages,so I was a bit

startled to see it so high. I'm still to be on PTU 50mg po twice a

day. (As per endo instructions)although I split it up into 3 times a

day.Any thoughts and comments are always appreciated.

Luci

[Guest guest]

Hi Luci,

I can't understand why she'd say you were still hyper! Not only are you

within the " norms " on all the tests, your levels are just like mine were

when my endo said to reduce meds, that I was obviously having hypo symptoms

at those levels. I, too had FT4 of 1.1, although I didn't get an FT3 done

last time. It also makes me sad that your endo seems threatened by your

knowing anything.

Well, anyway I have always reduced my own med doses as needed, and over time

it's worked out for me. My very unprofessional advice is, don't reduce more

than a bit at a time, and don't reduce too fast, leaving at least a week (if

you see NO improvement by the reduction) to a month or many months if you

are feeling good after reducing. I've been at my same level of meds for well

over a month now, and am totally psyched to get my labs done in a couple

days.

I have the seed of a theory, where in the microcosm, you have to take the

meds evenly throughout the day to prevent swings in levels and give your

body a " rest " , and in the macrocosm, you look at the same process over

time--you don't want to swing between hyper and hypo, or your body won't get

to " rest " and re-find it's normal levels (go into remission).

I've re-written that last paragraph 3 times trying to make clear what's in

my head, and it still may not be. But I do feel that continuity of levels is

our best ally in fighting this disease. Get to your best normal set-point

and then adjust meds as needed, to stay there. This is NOT a static disease

where you will always need the same amount of mediation, but rather, one

where you are working towards helping your body find remission.

Another thing that's been said here before, but makes total sense to me:

most endos deal with a lot of diabetics, who have to test and adjust their

own levels routinely. It shouldn't be that hard to convince an endo that we

need to do the same sort of thing, albeit based on the symptoms and

medications for our particular disease.

Finally, I guess I'd start looking to either find a new endo who is more

empathetic and less threatened, or force the issue with this one, going in

armed with the best info possible, and demand that she treat you as an

educated consumer of her services who can, and must, relate to her as an

adult in charge of your own health.

Good luck!

Terry

>

> Reply-To: graves_support

> Date: Tue, 13 May 2003 22:24:34 -0000

> To: graves_support

> Subject: test results(how do they look?)

>

> Hi everybody,

> I just got back from my endo appt. and got back my latest test

> results and was wondering how they looked. I " feel " OK.I have had a

> bit of a bloated tummy the last few days,but Not as achy, and it's

> not as hard to walk up stairs as it was for me about 2 to 3 weeks

> ago.

> When I posted my last labs before these, and described how awful I

> was feeling it was suggested to me that my T3F and T4F were probably

> going too hypO for Me and I was feeling that.(MY tsh was.29 at the

> time) So I described the feelings I had and she(endo) said she

> doesnt understand why I would feel like that I was still hyperT. I

> tryed to say that the T3F and T4F were slighter on the lower side

> and I was feeling it.Well as usual I got the feeling that I p***ed

> her off by knowing anything and was dismissed.Elchhh....ok so here

> are the lastest...

> as of 5/6/03

> TSH 1.1 mIU/L range is .40-5.50

> T4,Free 1.1 ng/dl range of .8-1.8

> T3,free 283 pg/dl range of 230-420

>

> labs collected on 4/7/03

> TSH .29 (L) range is .40-5.50

> T3,free 1.0 range .8-1.8

> T4,free 288 range 230-420

>

> This is the absolute highest my TSH has been in ages,so I was a bit

> startled to see it so high. I'm still to be on PTU 50mg po twice a

> day. (As per endo instructions)although I split it up into 3 times a

> day.Any thoughts and comments are always appreciated.

> Luci

>

>

>

>

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> Please consult your doctor before changing or trying new treatments.

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>

[Guest guest]

-----BEGIN PGP SIGNED MESSAGE-----

Hash: SHA1

Luci wrote:

>

> I tryed to say that the T3F and T4F were slighter on the lower side

> and I was feeling it.Well as usual I got the feeling that I p***ed

> her off by knowing anything and was dismissed.Elchhh....ok so here

> are the lastest...

> as of 5/6/03

> TSH 1.1 mIU/L range is .40-5.50

> T4,Free 1.1 ng/dl range of .8-1.8

> T3,free 283 pg/dl range of 230-420

>

> labs collected on 4/7/03

> TSH .29 (L) range is .40-5.50

> T3,free 1.0 range .8-1.8

> T4,free 288 range 230-420

>

> This is the absolute highest my TSH has been in ages,so I was a bit

> startled to see it so high. I'm still to be on PTU 50mg po twice a

> day. (As per endo instructions)although I split it up into 3 times a

> day.Any thoughts and comments are always appreciated.

One of the few documented approaches to the antithyroid drug regime is

the algorithmn at thyroidmanager.org. They suggest cutting down on the

antithyroid drug as soon as the TSH reaches the lower edge of the normal

range.

My experience, for what it is worth, is that this works because most

people are overmedicated at that point and immediately shoot out the

other side of the range unless something is done immediately to keep

them level.

I doubt you are about to become suddenly and chronically hypothyroid on

the dose you are on, but it is wise to keep an eye on things to make

sure you don't drift further that way.

Also I sometimes get new symptoms when the TSH reappears, guess it is

things settling back down closer to normal.

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[Guest guest]

Hi Terry,

It is infurating isnt it...Well I too was not paying much

attention to my T3f and T4f last month. I think it might have been

Elaine who pointed out my results were concevably on the low side

for me since I was having such a difficult time just walking.All my

attention was to the THS which at that time was still in hyperland.

Now I know better!! Even though I read all post including ones

concerning pregnancy and young children it's hard to put it into

perspective until you have to actually deal with in in your own

personal world.

I concidered lowering my own dose as well I just didnt want to do

anything drastic. I already do not take the 2 doses a day like I was

instructed to. When I pointed out that the manufacureres lable

states to take it in 3 8hr doses I saw the dragon head rear up and

she got miffed and snapped to just take it in 2 doses OK???. No

problem doc....grrrr

I aggree with your theory that the body needs continuaity

Spelling?? It needs an even keel all thru the day in order to

focus and mend itself.

As far as hyPO symptoms go this month I feel good. Much less

limping I'm still cold but not as I had felt in past weeks. I am not

going to the bathroom as good as before (my poor tummy actually

hurts because of it.) I eat pleanty of fiber drink pleanty of water,

it's just slower. Thats the part I am hating this month. I'ts always

something though...Ahhh

Well Terry good luck with your labs coming up!!and thanks for

listening.

Luci

> Hi Luci,

>

> I can't understand why she'd say you were still hyper! Not only

are you

> within the " norms " on all the tests, your levels are just like

mine were

> when my endo said to reduce meds, that I was obviously having hypo

symptoms

> at those levels. I, too had FT4 of 1.1, although I didn't get an

FT3 done

> last time. It also makes me sad that your endo seems threatened by

your

> knowing anything.

>

> Well, anyway I have always reduced my own med doses as needed, and

over time

> it's worked out for me. My very unprofessional advice is, don't

reduce more

> than a bit at a time, and don't reduce too fast, leaving at least

a week (if

> you see NO improvement by the reduction) to a month or many months

if you

> are feeling good after reducing. I've been at my same level of

meds for well

> over a month now, and am totally psyched to get my labs done in a

couple

> days.

>

> I have the seed of a theory, where in the microcosm, you have to

take the

> meds evenly throughout the day to prevent swings in levels and

give your

> body a " rest " , and in the macrocosm, you look at the same process

over

> time--you don't want to swing between hyper and hypo, or your body

won't get

> to " rest " and re-find it's normal levels (go into remission).

>

> I've re-written that last paragraph 3 times trying to make clear

what's in

> my head, and it still may not be. But I do feel that continuity of

levels is

> our best ally in fighting this disease. Get to your best normal

set-point

> and then adjust meds as needed, to stay there. This is NOT a

static disease

> where you will always need the same amount of mediation, but

rather, one

> where you are working towards helping your body find remission.

>

> Another thing that's been said here before, but makes total sense

to me:

> most endos deal with a lot of diabetics, who have to test and

adjust their

> own levels routinely. It shouldn't be that hard to convince an

endo that we

> need to do the same sort of thing, albeit based on the symptoms and

> medications for our particular disease.

>

> Finally, I guess I'd start looking to either find a new endo who

is more

> empathetic and less threatened, or force the issue with this one,

going in

> armed with the best info possible, and demand that she treat you

as an

> educated consumer of her services who can, and must, relate to her

as an

> adult in charge of your own health.

>

> Good luck!

>

> Terry

<snipped first part due to lenth>

[Guest guest]

Hi Simon,

Thanks for responding. I was worried that I might go into a fast

hyPo because now the TSH went up so high. I had already thought that

I need to be extra vigilant on how I feel, these next few weeks. I

also will go check out thyroidmanager and check out the algorythm

and try to understand it. Thanks for your input.

Luci

> >

> > I tryed to say that the T3F and T4F were slighter on the lower

side

> > and I was feeling it.Well as usual I got the feeling that I

p***ed

> > her off by knowing anything and was dismissed.Elchhh....ok so

here

> > are the lastest...

> > as of 5/6/03

> > TSH 1.1 mIU/L range is .40-5.50

> > T4,Free 1.1 ng/dl range of .8-1.8

> > T3,free 283 pg/dl range of 230-420

> >

> > labs collected on 4/7/03

> > TSH .29 (L) range is .40-5.50

> > T3,free 1.0 range .8-1.8

> > T4,free 288 range 230-420

> >

> > This is the absolute highest my TSH has been in ages,so I was a

bit

> > startled to see it so high. I'm still to be on PTU 50mg po twice

a

> > day. (As per endo instructions)although I split it up into 3

times a

> > day.Any thoughts and comments are always appreciated.

>

> One of the few documented approaches to the antithyroid drug

regime is

> the algorithmn at thyroidmanager.org. They suggest cutting down on

the

> antithyroid drug as soon as the TSH reaches the lower edge of the

normal

> range.

>

> My experience, for what it is worth, is that this works because

most

> people are overmedicated at that point and immediately shoot out

the

> other side of the range unless something is done immediately to

keep

> them level.

>

> I doubt you are about to become suddenly and chronically

hypothyroid on

> the dose you are on, but it is wise to keep an eye on things to

make

> sure you don't drift further that way.

>

> Also I sometimes get new symptoms when the TSH reappears, guess it

is

> things settling back down closer to normal.

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