Spoke too soon

[Guest guest]

Look at me--- I'm the farthest one north!

> I as soon as I posted I couldn't get to homestead I got in LOL

> Anyway...our map on the webpage has been updated as well

> http://.homestead.com/locations.html

>

> Terri

[Guest guest]

Yes You are way............ up North.

Kim Fuoco

www.honeybearsoap.com

Re: spoke too soon

> Look at me--- I'm the farthest one north!

>

>

>

>

> > I as soon as I posted I couldn't get to homestead I got in LOL

> > Anyway...our map on the webpage has been updated as well

> > http://.homestead.com/locations.html

> >

> > Terri

>

>

>

>

[Guest guest]

Nick is already running a fever for tonight ((( and here I thought

he was doing better today.

**Sigh**

Hugs Helen and (5,systemic)

[Guest guest]

Helen,

All I can say, is our kids definitely keep us on our toes. As soon as you sit back and take a breath here they go again. Just support him, and make sure you get plenty of support for yourself.

Are you throwing in some Tylenol along with the naprosyn?

You are a wonderful mommy, keep up the great work! We are all behind you

CasariaLove is only as purely received as it is given.

[Guest guest]

-Becki...

Nick is a totally different kid when he has his fevers. I can tell

he has a fever without even whipping out the thermemotor.

last night he was acting fine after I talked to the rheumy and was

sitting on the floor playing ninetendo with one of his brothers. A

few minutes later I looked at him to find him just laying there

curled in a ball facing away from the TV. One look at his face and i

knew he had a temp.

He woke up this morning with a temp too (103) wanted cuddling and

his med. Hes spent all morning on the sofa watching movies. its now

12.30pm and his fever has gone and hes all perky and acting fine

again. Im sure it will be back again tonight.

His knees are hurting " a little " he says, but not like they were

sunday night. Im thinking they might be a little " achy " Thankfully

ive not noticed any swelling in his knees and hes able to move them

ok.

This is all so new still to me. I really thought we were done with

the fevers, its been about 6-8 weeks since he had one. Im not too

worried about the pred, Nick was on it alot between the ages of 1

and 2 for his asthma, although never for extended periods of time, i

think the longest was a month, but he did have it fairly often that

year. But i do want to aviod it if we can. unless he REALLY needs it.

Im not too worried about being out of the country for so long, at

least we know what Nick has now and Im also taking my laptop so ill

be calling on the experts on the list to help me if need be )))

Hugs Helen and ( 5, systemic)

-- In , Arthurnator@w... wrote:

> Hi Helen,

> Becki again.It is not uncommon for a systemic child to feal fine

duiring the

> day and then the fever sneaks up at night.When Nick runs the fever

does he

> have a whole lot of pain and acts like a totaly differant child?

Short of pred all

> you can do is add some Ibuprofin.Systemic fevers usualy don't

respond to

> NSAIDS and other antipyretics though.Hopefuly things will calm

down before you

> leave on your vacation.

> Do to the fact that you are just starting your JRA journey do the

rheumies in

> London know that?What I am saying is, if you get over to London

and things

> start spiraling out of control will they see you ASAP?Arthur is

notorious for

> just droping a bomb on you and catching you off guard.

> Hugs

> Becki and 4systemic

[Guest guest]

Hi Helen,

OOPS,No Ibuprofin,I meant to say Tylenol.I think you have been keeping a journal,if not get one and write this stuff down.It is easy to forget when and how often these things happen.Glad to hear Nick's knee isn't swollen but it still kills you to have them in pain.

Hugs

Becki and 4systemic

[Guest guest]

Hi Rosie,

Perhaps you are like me. Same problems, Im now on 50mg of hydrocortisone and 50mg of T3. I dont know if you have had or tried T3 yet?. Its been a different ball game since I started on it 4 weeks ago. I emailed earlier this evening.

Bev x

Spoke too soon

Day 3 of starting Armour (half a grain) and I've got that pressure in my head feeling that I remember so well from last time.On the plus side, I tolerated it longer than last time, when I felt like this by Day 2.I dunno what to do now. Clearly I've got to stop taking Armour, but where now? I'm on 35mg HC so can't go up much further with that even if it is not enough, and I can't see why it wouldn't be.Help gratefully received.Rosie

Looking for last minute shopping deals? Find them fast with Search.

[Guest guest]

Hi Rosie,

Just want to say when I was taking just 1/8 grain a couple of weeks ago

I had that pressure in my head but it went away after 3 days, now maybe

the pressure you are having is more severe but mine wasn't really

painful, it was more scary than unbearable..another sufferer said maybe

the pressure was just an adjustment to not having any thyroid hormone

for a while and therefore not really a problem. On the other hand you

could just go down to a 1/4 grain for a few days and then increase

again. I have read of people taking up to 40mgs of HC..

Wishing you the best,

>

> Day 3 of starting Armour (half a grain) and I've got that pressure in

> my head feeling that I remember so well from last time.

>

> On the plus side, I tolerated it longer than last time, when I felt

> like this by Day 2.

>

> I dunno what to do now. Clearly I've got to stop taking Armour, but

> where now? I'm on 35mg HC so can't go up much further with that even

> if it is not enough, and I can't see why it wouldn't be.

>

> Help gratefully received.

>

> Rosie

>

[Guest guest]

>

> Hi Rosie,

> Perhaps you are like me. Same problems, Im now on 50mg of

> hydrocortisone and 50mg of T3. I dont know if you have had or tried

> T3 yet?.

No I haven't. Maybe it is the next step.

Why are you on 50mg HC? I mean, what does 50mg do for you that 40 or

45 don't? How did you know that 50mg was the right dose for you? I

don't know that 35mg HC is the right dose for me, but don't know where

to go from here. My BP is still dropping 20-ish points on standing but

jeez my fingers are so swollen they're like sausages, and fluid

retention has never been a problem for me before. I would have thought

that 35mg ought to be enough for anyone :-(

As for the T3, are you on T4/T3 combo, or just T3? Any idea why T3

works for you while Armour doesn't? Do you feel well?

> Its been a different ball game since I started on it 4 weeks ago. I

> emailed earlier this evening.

Do you mean you emailed me? At what address, the scat account? That

one isn't very good for me as I seldom have the energy to climb up to

the loft; a better one is rosiebint at gmail dot com which gets checked

throughout the day. I've tried several times to edit my profile

but I just can't seem to do it. Anyway... could you please resend?

Rosie

[Guest guest]

Hi Sara,

> Just want to say when I was taking just 1/8 grain a couple of weeks

> ago I had that pressure in my head but it went away after 3 days,

> now maybe the pressure you are having is more severe but mine

> wasn't really painful, it was more scary than unbearable..

It's not painful, I just feel very, very wrong. So for you it was a

case of getting used to the dose? Did you ever manage to increase it

(successfully)?

> another sufferer said maybe

> the pressure was just an adjustment to not having any thyroid

> hormone for a while and therefore not really a problem. On the

> other hand you could just go down to a 1/4 grain for a few days and

> then increase again.

Well, I can try. I have a pill cutter (somewhere). I had been

planning to start on a quarter grain but didn't in the end because

the half grain tab is so small already.

Well it's the best plan, anyway. Tomorrow a quarter grain & see how

it goes.

> I have read of people taking up to 40mgs of HC..

Yeah but no but... now that the side effects are getting unpleasant,

I want to be very sure I'm doing the right thing before increasing

it. At the moment I have no reason to suspect it is insufficient

other than intolerance of Armour and Raglan's Sign still present.

Rosie

[Guest guest]

Hi Rosie,

Would you email Dr. P and ask him what he thinks about the swelling

reaction? meantime you could post on STTM and Realthyroidhelp.com to

see if anyone else has had this side effect. I had others but not

this so don't feel qualified to advise on it. I can understand your

hesitancy to increase the HC. I'd want to sort out the swelling first

too. Does Safe uses of Cortisol say anything about it I wonder? I

know the Realthyroidhelp site has a file on there that has all the

pertinent page nunbers listed for our purposes i.e AF and thyroid

connection so it would shorten your search. I haven't gotten around

to scan that file yet.

I didn't increase past the 1/8 grain, I discontinued totally as I am

trying the US docs regime. But now that I think of it, I was using

90mgs Armour until I crashed i.e. the Adrenals crashed so it would

seem to suggest the reason I became totally intolerant was due to AF!

Maybe you do need more HC or maybe just to be on the increased dose a

bit longer before taking the Armour at all.

Good luck, keep us posted

Love

Sara

Rosie

>

> It's not painful, I just feel very, very wrong. So for you it was a

> case of getting used to the dose? Did you ever manage to increase

it

> (successfully)?

>

> > another sufferer said maybe

> > the pressure was just an adjustment to not having any thyroid

> > hormone for a while and therefore not really a problem. On the

> > other hand you could just go down to a 1/4 grain for a few days

and

> > then increase again.

>

> Well, I can try. I have a pill cutter (somewhere). I had been

> planning to start on a quarter grain but didn't in the end because

> the half grain tab is so small already.

>

> Well it's the best plan, anyway. Tomorrow a quarter grain & see

how

> it goes.

>

> > I have read of people taking up to 40mgs of HC..

>

> Yeah but no but... now that the side effects are getting

unpleasant,

> I want to be very sure I'm doing the right thing before increasing

> it. At the moment I have no reason to suspect it is insufficient

> other than intolerance of Armour and Raglan's Sign still present.

>

> Rosie

>

[Guest guest]

I thought 35mg was 'my' dose for a long time, but i got a hump on my

neck/back (the dreaded buffalo hump), higher blood pressure and red

cheeks, over just a year on 5mg too much.

I lowered to 30, then 25, and now back up to 30 now that i'm pregnant,

and i'm feeling quite well. 35 may be responsible for the head

pressure sensation due to higher blood pressure when you start the Armour?

Jen

>

> Day 3 of starting Armour (half a grain) and I've got that pressure in

> my head feeling that I remember so well from last time.

>

> On the plus side, I tolerated it longer than last time, when I felt

> like this by Day 2.

>

> I dunno what to do now. Clearly I've got to stop taking Armour, but

> where now? I'm on 35mg HC so can't go up much further with that even

> if it is not enough, and I can't see why it wouldn't be.

>

> Help gratefully received.

>

> Rosie

>

[Guest guest]

Oh Rosie, how miserable you must feel. I would stop taking your Armour for one day and then try starting back using only quarter of a grain. Some particularly sensitive people have to start using VERY low with tiny amounts and gradually build it up as your body gets used to it. I hope that works. You might need to increase your Cortisol during this time because of the extra stress of your body coping with extra thyroid replacement. I have lent out my books telling what doses you can go up to, so can't really help, but those who are taking it will be able to help you more here.

Luv - Sheila

Day 3 of starting Armour (half a grain) and I've got that pressure in my head feeling that I remember so well from last time.On the plus side, I tolerated it longer than last time, when I felt like this by Day 2.I dunno what to do now. Clearly I've got to stop taking Armour, but where now? I'm on 35mg HC so can't go up much further with that even if it is not enough, and I can't see why it wouldn't be.Help gratefully received.Rosie

No virus found in this incoming message.Checked by AVG Free Edition. Version: 7.5.516 / Virus Database: 269.19.10/1241 - Release Date: 24/01/2008 09:58

[Guest guest]

Hi

As you have my copy of "Safe uses of Cortisol" - did you find the answer regarding the swelling. If so, can you let us know what he says.

Luv - Sheila

I'd want to sort out the swelling first too. Does Safe uses of Cortisol say anything about it I wonder? I know the Realthyroidhelp site has a file on there that has all the pertinent page nunbers listed for our purposes i.e AF and thyroid connection so it would shorten your search. I haven't gotten around to scan that file yet.

..

No virus found in this incoming message.Checked by AVG Free Edition. Version: 7.5.516 / Virus Database: 269.19.10/1241 - Release Date: 24/01/2008 09:58

[Guest guest]

Hi Rosie'

My name is Bev. I like you had the same problems. I had to increase my Hydrocortisone to 50mg eventually and then started on a quarter of half a grain and built up gradually. The most Armour i could tolerate was a bout 45mg. Dr Peatfield started me off on T3 and its been ,a vast improvement I reduced the Armour as I increased the T3, Im now on 50mg of T3 and no Armour. May reintroduce a very low ammount of the Armour and see how that goes. Its very much trial and error. Dont give up hope. I have been very down at times and can now see light at the end of the tunnel. I find that I have to take a little extra hydrocortisone around the time that I ovulate and when Im on my period as this puts added stress on my body and I start feeling wobbly etc again. Hope you find this helpful.

Luv Bev

Re: Spoke too soon

Oh Rosie, how miserable you must feel. I would stop taking your Armour for one day and then try starting back using only quarter of a grain. Some particularly sensitive people have to start using VERY low with tiny amounts and gradually build it up as your body gets used to it. I hope that works. You might need to increase your Cortisol during this time because of the extra stress of your body coping with extra thyroid replacement. I have lent out my books telling what doses you can go up to, so can't really help, but those who are taking it will be able to help you more here.

Luv - Sheila

Day 3 of starting Armour (half a grain) and I've got that pressure in my head feeling that I remember so well from last time.On the plus side, I tolerated it longer than last time, when I felt like this by Day 2.I dunno what to do now. Clearly I've got to stop taking Armour, but where now? I'm on 35mg HC so can't go up much further with that even if it is not enough, and I can't see why it wouldn't be.Help gratefully received.Rosie

No virus found in this incoming message.Checked by AVG Free Edition. Version: 7.5.516 / Virus Database: 269.19.10/1241 - Release Date: 24/01/2008 09:58

Be a better friend, newshound, and know-it-all with Mobile. Try it now.

[Guest guest]

Hi Rosie,

I increased my Hyrocortisone before I ever started Armour. I knew I felt better on an increased dose as my symptoms of pain in my flanks, chronic loose bowels, panic attacks,shaky legs,allergies to my jewelry (wedding ring) and sticking plasters, pain full joints in my fingers, confusion etc had improved a bit with 20mg. However Dr Peatfield said its not enough increase gradually to a max of 60mg. He was right and I no longer have these symptoms at all. I did have some fluid retention and pitting at the ankles and some fluid in my hands and face. This wasn't because of the hydro cortisone. As soon as I started T3 I lost all the fluid really quickly my body must have been crying out for it. I will stabilize for a while and then look at reducing the Hydro cortisone in time. However I realize that I may have to continue taking it for

ever. By the way my blood pressure still dropped when I saw Dr Peatfield last time at 40mg.

Re: Spoke too soon

>> Hi Rosie,> Perhaps you are like me. Same problems, Im now on 50mg of > hydrocortisone and 50mg of T3. I dont know if you have had or tried > T3 yet?. No I haven't. Maybe it is the next step.Why are you on 50mg HC? I mean, what does 50mg do for you that 40 or 45 don't? How did you know that 50mg was the right dose for you? I don't know that 35mg HC is the right dose for me, but don't know where to go from here. My BP is still dropping 20-ish points on standing but jeez my fingers are so swollen they're like sausages, and fluid retention has never been a problem for me before. I would have thought that 35mg ought to be enough for

anyone :-(As for the T3, are you on T4/T3 combo, or just T3? Any idea why T3 works for you while Armour doesn't? Do you feel well?> Its been a different ball game since I started on it 4 weeks ago. I > emailed earlier this evening.Do you mean you emailed me? At what address, the scat account? That one isn't very good for me as I seldom have the energy to climb up to the loft; a better one is rosiebint at gmail dot com which gets checked throughout the day. I've tried several times to edit my profile but I just can't seem to do it. Anyway... could you please resend?Rosie

Never miss a thing. Make your homepage.