what's going on?

January 30, 2000

In a message dated 1/29/00 7:32:45 PM !!!First Boot!!!, Hkenton@...

writes:

<< Hi, all! As I type, am feeling particularly nervous, shaky, sad, want to

cry, feel like going to hyperventilate. What is it about this Graves'

Disease? Was fine (or semi-fine) an hour ago. Have been diagnosed but only

treatment so far is a beta-blocker to control heartrate.

Doesn't this extra hormone get released at a steady rate? Ok, steady;

abeit accelerated, rate anyway?????? Does it get released in spurts,

accounting for the unpredictability of the nerves, shakes, tachycardia, etc?

Does anybody know?

Thanks for letting me vent. Helen >>

Hi Helen and everyone,

All endocrine hormones, including thyroid hormones, are released in a

pulsatile manner; i.e. they are squirted into circulation, a whole bunch at a

time. This is one reason for the intermittent nature of thyroid symptoms. A

key time for one of these spurts is in the early morning right before you

wake up. This is usually the time you'll feel rapid heartbeat.

January 31, 2000

helen,

have you been recently diagnosed? i am just asking because when i was

diagnosed i became hyper-aware of my symptoms and became severely 'freaked'

out from finding out i had a disease. that first 48 hours after finding out,

i was a wreck and almost checked into a hospital. so, i just wanted to say

that it should get better, just avoid stress at all costs. even though i

have tremors etc, i have chosen to go off beta-blockers because they made me

feel exhausted. and with this disease i feel exhausted as it is. my

heartrate, after coming to terms with what was going on, slowed after a few

weeks. i remember one day at work (the day after i was diagnosed) my boss

thought i was going to die after checking my pulse. he was positive i was

having a heartattack (i don't even remember how high it was)

mary WA

February 1, 2000

Dear , Yes, I've been recently diagnosed. Am taking a beta-blocker.

PCP put me on a beta-blocker last fall. However, earlier, June or July, he

sent me to a psychologist & put me on Klonopin for " panic attacks " . So

several months were lost while I fooled around with the psychologist.

Finally, was referred to endocrinologist.

Took forever to get appt. (HMO, needless to say.) Things were further

delayed because I had purchased tickets to go to Clearwater, FL, to visit my

daughter & grandchildren over Christmas & New Years. (I live in Phila.)

Debated cancelling trip; decided not to. Finally had I-131 scan 1/4/00.

Endocrinologist told me diddly-squat about what was going on with my

body.

Told me I was hyperthyroid and he would treat me with " iodine " . Was about to

go through with it when I had second thoughts and started researching things

on the web.

I must say at this point, I am overwhelmed by all the info. I've

followed, looked up, researched, e-mails read. I have to stop for a day or

two. But it was necessary to do this. I've decided not to go for the RAI.

Want to try the ATD's to see if I can be one of the lucky ones who go into

remission. Can always do the RAI later on. Realize this may eventually be a

distinct possibility.

As far as being overwhelmed by the diagnosis of a chronic, life-long

disease, it is just another stress factor. I've sufferred from chronic pain

for almost 15 years. Fibromyalgia, arthritis (Osteo, thank goodness) of the

lumbar spine & hip with a con-stantly aching hip & leg. Osteoporosis is just

starting (from thyroid problems?) and am awaiting the results of biopsy done

earlier this month after gynecologist told me my Pap smear was " abnormal. "

Also, recently diagnosed with irritable bowel syndrome. Gee, did I miss

anything?

I look after and take care of my 83 year old uncle and, as far as stress

goes, I just don't know how to reduce it. I am so TOTALLY overwhelmed by

everything I don't know where to start. And this Graves' disease definitely

is not a calming factor.

Maybe if I can get some of these physical problems under control--ha! the

Graves' seems to take forever--then I can start working on taking care of me

first.

I agree with you on the beta-blocker. Makes me feel like a zombie.

After taking it for months, I decided today not to take it upon getting up

just to see how high my heartrate would go. When it hit 160 resting, ( & with

the shakes & trembling) I took the pill. Found out how high the pulse would

go, but feel it was a mistake not to take the beta-blocker as it has taken me

all day & way into the night to get it back to what it was before. Oh well,

live & learn. And I truly believe the beta-blocker is making me depressed.

Of course, how could you really tell; everything that is going on is

depressing. But I just have this intuitive feeling.

It is interesting that you stopped your beta-blocker and your heartrate

decreased in a few weeks. Is this the ordinary thing to have happen? And

how did you ever manage to function with an increaed heartrate?

How do you stay functional with Graves? The mood swings--oy vay! I

know my Uncle does not understand what is going on. I can be so calm. Then

some quirky little insignificant thing happens and I go ballistic.

But I have really learned a lot from the group. So that's been good.

Somehow, I must cut down on the stress level. I know it is a priority.

I REALLY appreciate your reminding me of that.

You mention that you stopped the beta-blocker, but you didn't say what,

if any, treatment you subsequently had.

Thank you so much for listening to me. That was a lot to plow through.

Helen

February 1, 2000

helen,

i have been taking PTU. although, for me, it's funny how i have had symptoms

for years and thought it was just me. i have been known to swig back high

amounts of coffee, so before i knew i had graves, i thought it was just being

high from the coffee. my heartrate, like i said soared when i found out, and

i was taking two beta blockers per day. i weened myself off of them, moving

down to one per day to finally 1/2 per day etc... i have not checked my

heartrate in awhile. i know that it is still higher than a normal healthy

person, but i am not having palpitations or extremely rapid heartrates

anymore. could be the PTU, could be that i've been used to the way my body

is and has been for a long time. HMO's do suck. i am so sorry that you are

dealing with one. it is too bad we all have to be experts due to

unelightened doctors. feeling the way we do, for me it's hard to even read

these emails. they upset me, and research on the net, whew, i get sooooooo

frustrated (aol doesn't help).

anyways, be careful if you do cut down on beta-blockers. consult physician

and do it slowly. also, my dad used to do this and drive the doctors nuts,

write down all of your questions on a 3x5 card and go in there and don't

leave until all your questions are answered (he had HMO!)

take care,

WA

October 10, 2002

By all means keep up your exercise. Maybe you need another form of it,

or your diet should be examined. Perhaps your body's changes are too

gradual for you to notice. Have you asked anyone around you how you

look now?

I don't know what my own T levels are, but I suspect they aren't

anywhere close to 800 on a regular basis. I took up bicycling three

years ago and I can see its effect on my body.

rick

> I have been on Androgel for about a year now. My T levels are

> consistantly in the 800s. I do cario and lift weights, yet my body

> looks the exact same as before I started any of this. It seems that

I

> should see at least some improvement, but I really don't see any

> difference in my body. I am starting to get very discouraged. Does

> anyone have a ray of hope for me?

>

> Justus

October 10, 2002

What are yor other levels? E2, Free T etc.

> I have been on Androgel for about a year now. My T levels are

> consistantly in the 800s. I do cario and lift weights, yet my body

> looks the exact same as before I started any of this. It seems that

I

> should see at least some improvement, but I really don't see any

> difference in my body. I am starting to get very discouraged. Does

> anyone have a ray of hope for me?

>

> Justus

October 11, 2002

>

> What is your complaint? I just found out my T is at 169.

To clarify, I'm not complaining that my T levels are in the 800s. The

issue is that I don't seem to be seeing any results from these

levels. When I started androgel, my T levels were 147. But a number

on a piece of paper is not much to get excited about if there isn't

real physical results to back it up! Neither my GP or my urologist

will run any test other than total T counts and there aren't any

endo's in my area. Perhaps I need to take a bit of a drive to find

one.

Justus

October 11, 2002

You can get labs from Healthcheckusa.

http://www.healthcheckusa.com/home.html

Getting a doc to act on the results, if needed, is another issue.

Apart from your body composition problems, are you otherwise

asymptomatic?

Having suitable androgen levels is only one part of the body

composition equation as you know. To give a helpful response, I

would need more detailed information. Height/weight, approximate

bodyfat %, a picture might be helpful. Goals? Do you need to lose

fat, gain muscle mass, or both? Can you give a more detailed

schedule of training? How much cardio? What are the details of your

training routine? How often? What lifts? How many sets & reps?

Are you relatively strong or weak. Dietary considerations are at

least as important as training in achieving body composition goals.

Do you know how many calories you are taking in per day? How many

grams of fat, carbs, and protein?

I agree that numbers on a piece of paper are of limited importance.

Brad

> >

> > What is your complaint? I just found out my T is at 169.

>

> To clarify, I'm not complaining that my T levels are in the 800s.

The

> issue is that I don't seem to be seeing any results from these

> levels. When I started androgel, my T levels were 147. But a number

> on a piece of paper is not much to get excited about if there isn't

> real physical results to back it up! Neither my GP or my urologist

> will run any test other than total T counts and there aren't any

> endo's in my area. Perhaps I need to take a bit of a drive to find

> one.

>

> Justus

February 11, 2003

This was a posting of a few days ago. but - I have had bloodtests and liver