help

[Guest guest]

Kathleen, Welcome to the scaredy cat club, honey. We are all scared, more

or less,

when we first get a hint of our diagnosis(es), and when we finally realize it

is real.

That's when we write to the group and vent, whine, moan, groan, cry, ask

questions

(no matter how silly they sound), and even laugh at ourselves.

Trying to come to terms with the Wolf, learning not to fear him, but to try

to tame

him, is what we are all doing every day. If we let fear overtake us, that

gets in the

way of all our efforts to function in spite of things, and blocks the

positive energy

we need to keep going.

If you know anything about human reactions, you know about the " fight or

flight

syndrome " that fear manifests in us. In the case of the Wolf, we don't

really have

the choice of flight. We take the disease with us wherever we go...so we

MUST fight.

We can be thoughtful and creative in this battle or we can flail our arms

about like

a run away windmill...both take energy, and only one of these choices is

really helpful,

the other wastes our precious reserves of energy.

Try to think of this as one of life's great challenges. Take it in small

stages, and deal

with one thing at a time. The whole idea of Lupus can overwhelm us all at

times, but

if we take each item as it happens, prevent those we can by getting good

medical

help, following sound and healthy routines, we can have quality time for

ourselves and with our families and friends. I moan and groan with the best

of 'em, but I also

make time to spend with my kids, my extended family, my friends, and for

doing those

things that are necessary to our comfort and wellbeing as a family. On days

when I

feel I can't face it another day, I remember that in the worst of times I did

survive,

I did overcome, and I can again. So can you.

Keep writing to the group, keep trying to see the positive side of your life,

you know

there is at least one, and keep on keeping on. The best strategy we have is

to keep

breathing and struggling on in the firm belief that science will find an

answer for

us...medicine has come such a long way in such a relatively short time...the

odds are

in our favor. Loving hugs, MM aka: Mike on of the moderators

[Guest guest]

Kathleen, You sound like me about 6 years ago. I cried and went into a depression. Since finding this group this past spring, I have grown to understand lupus alittle and now know that I can and will survive. You just need to relax a bit and breath. Lupus is a scarey thing but with help of good doctors and a good network of support(you will find a great support group here) you will do just fine. You have to stop looking at the negitive and think positive. You too can and will survive lupus. No lupus isn't cureable but it is manageable. Just keep looking for help and you will find it. Definitely read all that the lupies and have on lupus it will help you to learn alot. And the key here is to learn as much as possible so that you can help the doctors to help you. Some doctors don't know alot about lupus and won't tell you but with the information the lupies and have you can definitely tell them a thing or two to help.

Just remember to relax and breath and you will do fine. And if you need to vent, or cry do it, this is a great form to do this in. The people here in this group(I like to call family) are wonderful support and they honestly care about you. Hopefully you will come to cherish these people the way I do. Hope you relax a little and let life carry on but just get informed.

Angie

allen.kathleen@... wrote:

Hi I am new with this lupus thing and scared to death, Kathleen"The LUPIES Store" Come check out our store...http://www.cafepress.com/thelupies"The LUPIES Web Page"http://www.itzarion.com/lupusgroup.html"The LUPIES online photo albums!" Check out what your fellow Lupies look like...http://www.picturetrail.com/gallery/view?username=lupies

[Guest guest]

Thanks It is nice to know that other people have been there and did that and

are still able to talk about it and support others A great big Thanks Kathleen

[Guest guest]

Oh , I wish I was there. Sounds like a frustrating night.

There is mention by top docs like Dommisse that a large imbalance

between the T4 and T3 can itself cause the feel-bads. And you

definitely have a large discrepancy between the two, with your T4

being incredibly high, and your T3 being low.

When you say that 1/4 grain had you so sick that you could hardly

move, how long had you been on that 1/4 grain, and were the symptoms

the ones you mentioned towards the bottom of your email--the rapid

heartrate, the nausea, etc?? Did they occur within 2-3 hours after

taking one tablet??

Also, what have you said before about being treated with cortisol??

And remind me what that high basal temp is, and what is your pulse?

Now that sounds like an adrenal problem.

Janie

[Guest guest]

Also, have you EVER had a higher free T3 that you know of??

And have you ever been on T3-only--Cytomel??

[Guest guest]

And what is your blood pressure??

And what is the medical history of your mother??

[Guest guest]

(What about the following, which refers to a high catecholamine

level?)

Catecholamines is a collective term for the hormones epinephrine,

norepinephrine, and dopamine. Manufactured chiefly by the chromaffin

cells of the adrenal glands, these hormones are involved in readying

the body for the " fight-or-flight " response (also known as the alarm

reaction). When these hormones are released, the heart beats

stronger and faster, blood pressure rises, more blood flows to the

brain and muscles, the liver releases stores of energy as a sugar

the body can readily use (glucose), the rate of breathing increases

and airways widen, and digestive activity slows. These reactions

direct more oxygen and fuel to the organs most active in responding

to stress--mainly the brain, heart, and skeletal muscles.

Purpose

Pheochromocytoma (a tumor of the chromaffin cells of the adrenal

gland) and tumors of the nervous system (neuroblastomas,

ganglioneuroblastomas, and ganglioneuromas) that affect hormone

production can cause excessive levels of different catecholamines to

be secreted. This results in constant or intermittent high blood

pressure (hypertension). Episodes of high blood pressure may be

accompanied by symptoms such as headache, sweating, palpitations,

and anxiety. The catecholamines test can be ordered, then, to

determine if high blood pressure and other symptoms are related to

improper hormone secretion and to identify the type of tumor causing

elevated catecholamine levels.

[Guest guest]

Are you on DHEA??

[Guest guest]

> Are you on DHEA??

And are you taking Selenium? Selenium helps promote the T4 to T3

conversion.

[Guest guest]

Thanks for all yoir input Janie. I will try to answer as best I can.

> There is mention by top docs like Dommisse that a large imbalance

> between the T4 and T3 can itself cause the feel-bads. And you

> definitely have a large discrepancy between the two, with your T4

> being incredibly high, and your T3 being low.

I could believe that. That was my argument as well. How can you feel right

with such a hormonal imbalace? HOWEVER...low T3 should be making me gain

weight and have low body temp..UNLESS T4 does more than we think it does.

> When you say that 1/4 grain had you so sick that you could hardly

> move, how long had you been on that 1/4 grain, and were the symptoms

> the ones you mentioned towards the bottom of your email--the rapid

> heartrate, the nausea, etc?? Did they occur within 2-3 hours after

> taking one tablet??

I would say my heartbeat started to rise about an hour after. and then

climbed from there. It still has not dropped back down to 80, which makes me

think that if it were the shot of T3 itself than it would have subsided. It

was whatever the hormones did to whatever isn't working that kicked my ass.

Its not the Armour per se...its what that metabolism jumpstart did. This was

what I was worried about...going on a better med than synth was going to be

faster acting and work " better " , therefore have the possibility to kick my

little butt. It took two weeks for the .025 Levoxyl to start kicking my

butt-also a small dose likr the 1/4 grain- and when it did they INCREASED

it! And, after all those months of having a bad reaction to it, I am

probably more sensitive to it than I was before it started.

>

> Also, what have you said before about being treated with cortisol??

Which time? *GRIN* I am not on steriods now, however, treatment protocal

amoung top docs (and mind you, the pharmecutical companies actually agree

with this however the usless medical community does not seem to know or

care) is that if there is a real adrenal problem manifesting in weight loss,

nausea, diarrhea, etc that it must be treated prior to thyroid replacement.

That thyroid without cortisol will stimulate already fatigued adrenals,

causing illness and even death. Sometimes, upon treating low cortisol,

hypothyroidism is actually reversible if you got that way because of the

cortisol deficiency. If you got hashimoto's because your adrenal

insufficiency was auto-immune, then obviously your thyroid doesn't get

better. I don't have Hashi's. And I don't think (though I could be wrong)

that my adrenal problem is autoimmune in nature. There are four main things

that cause inability to convert. These four most likely are: Liver damage

(my enzymes and levels are good), Adrenal insufficiency, androgen/DHEA/Ovary

sex hormone deficiency or excess, and chronic illness.

> And remind me what that high basal temp is, and what is your pulse?

> Now that sounds like an adrenal problem.

>

This morning my basal temp was 98.4 and my pulse is 92.

Also, have you EVER had a higher free T3 that you know of??

Not that I know of. The only baseline I have is two months ago when I knew

to ask for it. Look at these numbers:

9/02 TSH 38? (I am a little brain fogged, I'll have to look...it was 30

something)

10/02 TSH 8 FT4 .98 (changed this time from .025 to .05)

12/02 TSH 3.14

1/03 TSH 2.20 FT4 1.28 FT3 2.66

3/03 TSH 1.7 FT4 1.9 FT3 2.88

You see the huge difference in my TSH and FT4, but where is the increase in

my FT3?

And have you ever been on T3-only--Cytomel??

No. Dr Ruth offered me the choice about this last week. However, I told her

I wanted the armour.

And what is your blood pressure??

My last bp at Dr Ruth's was 120/70-after being off Levoxyl for over a week.

Best its ever been since september.Its been low while on the levoxyl. In

January it was 92/60. All my life, I was told I had " perfect " blood pressure

before I knew what the numbers meant.

And what is the medical history of your mother??

Hmmm. This is difficult. Mom is hard to define. Mom was an overweight kid,

thin in her 20's, skinny like me in her 30's (but she didn't EAT-she was

depressed) and now overweight again since her mid 40's. She comes from a

long line of the very little and the hugely big. I have a weird family

tree...I look like the little irish women on her Dad's side, she looks like

the big polish women on her Mom's side...even when she was thin, she has

always been " big boned " . she has the menopause thing going on, and she takes

high blood pressure medictaion. Do I think she is hypo? I think she could

be, but very slightly. She tends to keep weight on and never sweats. Other

than that and her carpal tunnel stuff, she dosen' t have the fatigue and she

never complains of being cold.

Are you on DHEA??

No, but the Smokie test I took will give me my DHEA levels. This is kind of

hard to describe. I will not take it right now because I think that I have

too much testosterone. There are two possibilities I know of how this might

happen. First, in cases of genetic abnormality or problems with pituitary

function, sometimes the adrenals will not release enough cortisol, but at

the same time release too many androgens/DHEA to make up for it. I do not

think my problem is of pituitary nature, I would be surprised if that was

the case. While possible, not likely. The reason is that my TSH is OK, and

has lowered with T4 being put in my body and has never been supressed. For

me to have a problem with my pit that only effects the adrenal hormone

output would be very rare. The second is that if you are not manufacturing

enough cortisol OR DHEA, your ovaries start kicking out excess to try to

make up for it. This is why they check DHEA rather than the direct hormones

the ovaries make, because the ovaries produce the hormones too, but DHEA

will measure how much of it actually comes from the adrenals. (I may have

spent a " little " time learning about this...*grin*)

I have had doctors and nurses try to tell me that there was no way I was

hypothyroid. I told them to look at the labs and see for themselves. I have

symptoms of hypo for sure, but the obvious ones are missing. Slow

metabolism, low heart rate, and low body temp are things I just do not have,

and these things are part of the clinical workup and diagnosis. This has

been my issue since september. When they told me, I said " How is that

possible? " They told me to take my pill and go home, as have most doctors

since then. No one has been able to give me an answer as to how I got this

way, or what caused the hypo. I get " its just one of those things.... " and

when I would delve deeper and ask and beg, I would be told to go on an

antidepressant. I fought with the Netod at the old doc's yesterday about

them looking at each lab value seperately and not as a whole, calling each

" normal " rather than looking at them as a story. In my opinion...while not a

doc I am educated and not stupid...these labs tell a story of an underlying

problem. I am not converting properly, which has an underlying reason, and I

do not have the normal symptoms, which means there is an underlying problem,

and I am having a thyroitoxicosis reaction to meds while my labs are within

normal ranges. That shows me there is a problem! And with the cortisol drawn

at 7:45 in the morning, under stress and chronic illness, being a 14 and

have that be the highest it is all day under my body's condition? That shows

me there is a problem. She called back right before closing (I didn't

answer, let the machine take it) telling me I had to come in and talk to the

doctor. I haven't decided if I will do that. Last time, I spent $100 to talk

to a brainless med student for an hour and the doc for 5 minutes. While I

convinced them to run the cortisol and the T3, I was sent out of the office

still with rapid pulse still with pain, told to come back for a follow up in

4 weeks (4!) Only to have them interpret my tests as Normal... guess because

my TSH is optimal I am OK. I told her I went off the levoxyl. That got her

attention. However, I don't know if wasting my time and $$ with them is

something I can afford to do. I would like to have both a clinical doc and

Dr Ruth, to get different opinions...but this may not be the clinical doc I

choose!

Whew, that was a vent!!

[Guest guest]

i am 22 n i have 7 kids n i am n so much pain i hardly get out of bed n as u all

know that is hard to do w kids bc they need u but i had a cat scan done n they

said my tonsils was low but it wasnt the problem but how would they know if none

of them know about arnold chairi i was just wondering if anyone had anty ideas

about what i could do or say to the doctors bc they all seem like there is

nothing wrong n treats me like i have no idea what i am talking about n my pain

n very bad does anyone else hear like fluid leaking n ur head it kinda sounds

like a leaking faucet it bugs me n the doctor keeping tell me that i am not

hearing it but how can they tell me what i am hearing n my own head just let me

know aabout any of this u can help