Graves

[Guest guest]

I have the same as you . I don't feel normal unless my Free T4 is at

least 1.3 and Total T4 12. T3 has to be at upper end of normal or slightly

over normal to feel okay. If these drop I feel very hypo. My levels of T4

and T3 are now upper end of normal without TSH readable but I feel quite

good. Absolutely no hyper symptoms. Not on PTU right now but go on 50 mg

if I start to feel hyper symptoms. After feeling hypo for 11 months, having

gained 35 lbs. and had terrible fatigue and fibro syptoms I am enjoying a

little normalcy. I even lost 5 lb. on Weight Watcher's this past month.

What a nice change. I for one will not go with RAI, would rather be where I

am now and not have to rely on Dr.s to give me meds.

Graves

>

>

> I believe that very little is known about Graves and the workings of the

> thyroid, including " the Normal Range " Many people on this board have

> commented about on being in or out this range. I myself feel much better

> when my T4 is quite high. My TSH doesn't seem to matter and other people

> have said the same. My friend with Hashimotos feels terrible when her

> numbers get high enough to be within the range. Yet for all our

> suspicions of RAI we seem to accept this range of numbers that doctors

> use to tell us we are well. I don't understand why we accept this. Why?

>

>

> ---------------------------

[Guest guest]

Didn't mean to scare anyone...I am VERY illiterate when it comes to GD. I

came here, looking for help, which I have wonderfully received. I know now,

that I need to ask my endo what other options there are.

When I was first diagnosed with this a 3 weeks ago, I was told you take the

radioactive pill and that's it. Over and done with. Obviously the dr that

told me that was very illiterate also. I plan on looking into other

options.....

Jewls

In a message dated 3/17/00 12:33:45 PM Eastern Standard Time,

hearnwic@... writes:

<< Jewls, As many have said, you scare me. After your thyroid has been

destroyed you still have to deal with the anti bodies. You also have a

15% chance of developing Graves eye disease or if you have it making it

worse. That being said, maybe you will be one of the lucky few who do

feel better after RAI. We are not a bunch of reactionaries on this

board. Please remember that. >>

[Guest guest]

Eh? This is the first time I've heard of *that* symptom. What does it

mean?? Do they hurt?

Kari

>I don't have diabetes and my endo is also always looking at my feet, ankles

and shins for the red pin markings that can be characteristic of Graves. I

have some on the top of my feet.

[Guest guest]

>>Much of our problems come from the fact the these cowboys have been

going along for the past fifty years without any quality control

systems. That is I don't think that you are the first person in this

situation. All we can do is pray.

Or find out where she is and do some calling around on her behalf? I know

how hard it is to organize your thoughts when you're ill with this

disease....could we help??

Kari

[Guest guest]

wrote:

>Are your legs hard like rocks? Are your muscles

>always contracted?

No, I think my muscles are normal. As far as I can tell, the pain is coming

from my bones.

About a month ago, I started taking daily walks, both for the psychological

benefit and for weight loss (paradoxically, I gained a lot of weight over

the last few years, even though I have Graves' disease). Anyway, the daily

walks were fine, until I started getting pains in my lower legs. It doesn't

*feel* like any muscle pain I've ever had, but I'll have to discuss this

with the endo in about three weeks, which is my next appointment.

Unfortunately, I've had to stop exercising because of the pain. If I wasn't

so apathetic, I suppose I'd go out and buy a bicycle. Well, there's also

the money question...

>I am running for the most apathetic

>person on the face of the earth.

Well, if I wasn't so apathetic, I'd run against you :-)

Seriously, though, I know exactly what you mean. I have a huge pile of

snail-mail that's been accumulating for months now. I don't open it,

because I just don't care. Every so often (two or three months), I sort out

the bills and pay those. The rest of the mail just sits there.

>Are there any other symptoms?

Yeah, but I've mentioned this before -- fits of rage. Just today, I felt

like strangling a bank teller who wouldn't let me cash my income tax refund

check. Don't worry, though -- I didn't strangle her. Just gave her one of

those " if looks could kill " facial expressions.

Strangely, I don't have most of the classic Graves' symptoms, like racing

heart, bulging eyes, hyperactivity, etc.

--

[Guest guest]

Sorry for cutting in here but I get that muscle pain when I walk a long

distance,I think it feel's like lactic asid that a runner would get {mabey

something there} but I'm not a runner. The pain can build to sever then my

leg's become very hard to move one foot in front of the other, after a rest

and rubbing the muscles I'm ok.Does this sound familiar to anyone ?

Someone told me that adding a wee bit of salt to my diet would help and it

does,I have the weakness so bad in the beginning that I needed to hold onto

a wall to walk.

Kit

[Guest guest]

Yes Kit that is exactly what it feels like. But when I ran I never

experienced the pain and stiffness that I feel now.

-----

Whew! Yes thank you, for the longest time I though I was alone with this one

in particular.Mine get's worse if I have been on my feet all day or climbing

stairs a few times a day seem to make them more stiff and sore.Where I

really have to push myself to get up those stairs.Then the breathing is bad

at the top do you get that ? I didn't have these symptoms before Tapazol.

Kit

[Guest guest]

,

Did you let your uhmmm 'other' half know it might be real beneficial to BOTH

of you if he went with you? GD affects everyone around us and they also

need to learn and understand what we are going through too.

Just a suggestion.

Now my other half finally after 4 years is learning about GD and has become

wonderfully supportive, though right now I am involved in a project that is

creating higher stress levels and the effects are very definate with my

GD...he wants me to drop the project, I refuse, it is only for another 5-6

weeks and mentally I haven't felt so rejuvenated in a very long time. I am

not about to give it up before it is finished

You take care.

*HUGZ*

Jody

PS The Graves Rage will come in handy when the time is right on this

project <grin>

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[Guest guest]

Yes Kit that is exactly what it feels like. But when I ran I never

experienced the pain and stiffness that I feel now.

[Guest guest]

Hi Kit, I was at the endos yesterday. He thinks it is the Tapazole and

has changed me to PTU. I hope this clears it up. I can't even swim.

[Guest guest]

>paradoxically, I gained a lot of weight over the last few years, even

though I have Graves' disease).

I've gained about ten pounds, with Graves! I initially lost about 8, put

that all back on, and gained more! Has *anyone* here lost weight with

Graves? I'm not hypo, either. Odd!

>Yeah, but I've mentioned this before -- fits of rage.

I've been a bit ragey lately, too, but I think it might be because I've been

so tired (work's been hellish). But I worry, when I feel that anger

bubbling up again, and I hate snapping at my poor husband. Poor guy. I

must remember to thank him more often for putting up with me, when I get

that way.

Does anyone else have the trembling hands, but not the racing heart? I had

the heart racing thing, but that's been gone awhile. The trembling went

away, too, but it's been back for about a month!

Kari

[Guest guest]

>Hi , The leg pain is mostly in my calves too. I really need exercise

and the pain and stiffness is preventing me.

Are these let pains everyone's having the same as Charlie Horses? I get

those from time to time. Horrifying agony. I thought that was a vitamin B

defficiency? Haven't had one, since I've been taking that B complex. Could

be a coincidence.

>I think that the rages are from the Graves. Quite a few people on the board

get them. However, I

don't think that they are such a bad symptom. Has anyone ever lost it when

they weren't dealing with a person who wanted you to think that you were an

idiot?

I get terrible road rage. I want to ram into people's cars...well, only

people who, say, don't signal when they want to turn, or won't let another

person merge. I see SO much flagrant disregard for basic courtesy and basic

road laws. It makes my blood boil. Face to face confrontations I have to

walk away from, now, or I'll whack someone.

Kari

[Guest guest]

and . just having the chance to check up on a lot of messages. I

have been reading about the pain and sitffness in the calves as well as

apathy. When I went hypo last year I had all these symptoms. Like my

T4 and T3 dropped to mid to lower end of normal but my TSH never kicked in.

The docs said I was still hyper because of the low TSH. I was put on more

PTU and guess what, got more hypo symptoms and still no TSH. My GP put me

on Levoxyl replacement and within a few months my T4 and T3 were up to upper

mid normal range and minimal hypo symptoms and no hyper symptoms. Watch the

docs they love to say you are still hyper but you may be heading instead

hypo. I was like that for 9 months where my legs were so cramped and

swelled that I had to go on disability. (I am an RN). I was so tired I

needed to nap two hours every day. I could care less about anything. I

cried without reason and never felt normal. These are hypo symptoms. Just

watch your body and make note of the changes. Try to correlate them with

you lab values. Then let you doc know what you are feeling, never mind the

numbers. Been there and don't want to go back...

Graves

> Hi , The leg pain is mostly in my calves too. I really need exercise

> and the pain and stiffness is preventing me. I think that the rages are

> from the Graves. Quite a few people on the board get them. However, I

> don't think that they are such a bad symptom. Has anyone ever lost it

> when they weren't dealing with a person who wanted you to think that you

> were an idiot? I don't suffer fools gladly any more. I don't even feel

> guilty. I guess maybe I just don't have the intellect to deal with

> problem people anymore especially at home. My worst half has insisted on

> therapy. Oh well it's a place to go for an hour a week. The apathy is

> appalling.

>

> ------------------------------------------------------------------------

> Best friends, most artistic, class clown Find 'em here:

> http://click./1/4054/5/_/585824/_/959300252/

> ------------------------------------------------------------------------

>

> -------------------------------------

> The Graves' list is intended for informational purposes only and is not

intended to replace expert medical care.

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

> ----------------------------------------

>

>

[Guest guest]

In 1991 (my first bout with Graves) I lost sixty pounds. Probably a

combination of my husband's final illness, my nerves on edge, and

Graves onset. In late 1992 I went into remission.

In 1998 I developed a second onset of Graves. This time I have

gained sixty pounds!!!!!

Elaine

Kari Sagen wrote:

>

> >paradoxically, I gained a lot of weight over the last few years, even

> though I have Graves' disease).

>

> I've gained about ten pounds, with Graves! I initially lost about 8, put

> that all back on, and gained more! Has *anyone* here lost weight with

> Graves? I'm not hypo, either. Odd!

>

> >Yeah, but I've mentioned this before -- fits of rage.

>

> I've been a bit ragey lately, too, but I think it might be because I've been

> so tired (work's been hellish). But I worry, when I feel that anger

> bubbling up again, and I hate snapping at my poor husband. Poor guy. I

> must remember to thank him more often for putting up with me, when I get

> that way.

>

> Does anyone else have the trembling hands, but not the racing heart? I had

> the heart racing thing, but that's been gone awhile. The trembling went

> away, too, but it's been back for about a month!

>

> Kari

>

> ------------------------------------------------------------------------

> Best friends, most artistic, class clown Find 'em here:

> http://click./1/4054/5/_/585824/_/959356816/

> ------------------------------------------------------------------------

>

> -------------------------------------

> The Graves' list is intended for informational purposes only and is not

intended to replace expert medical care.

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

> ----------------------------------------

[Guest guest]

>In 1998 I developed a second onset of Graves.

>This time I have gained sixty pounds!!!!!

Elaine,

Were you taking anti-thyroid drugs at the time that you gained so much

weight? I'm curious about this weight issue, because I have gained roughly

70 pounds over the last two years, despite the fact that (apparently) I had

Graves' for much of that time. My disease was only diagnosed about 5 weeks

ago.

--

[Guest guest]

>In 1998 I developed a second onset of Graves.

>This time I have gained sixty pounds!!!!!

Elaine,

Were you taking anti-thyroid drugs at the time that you gained so much

weight? I'm curious about this weight issue, because I have gained roughly

70 pounds over the last two years, despite the fact that (apparently) I had

Graves' for much of that time. My disease was only diagnosed about 5 weeks

ago.

--

[Guest guest]

,

I realized I was exhibiting similar symptoms to my 1991 bout so I

was tested and went on PTU in 1998 when Graves reoccurred. From

1998 through February I picked up 60 pounds. The endo did not think

it was unusual, a small percentage of people gain rather than lose

weight. I was constantly hungry, the system was running at a very

rapid pace, and I was able to feed the system since I am no longer

working and have access to food whenever I want it. In February of

this year I started a low carb diet and have since lost 25 pounds.

I saw the endo today and he was happy with the weight loss, he has

been worried I would kick into diabetes if not careful, since the

current thinking is they go together (as does arthritis (all

auto-immune)). I feel good on the low carb diet and had the

impression that endo is recommending it to patients who complain

about loss of bread, etc., but I think if you get through the first

week it soon becomes second nature. I hope to get rid of all the

weight I gained.

I am still on PTU and still refusing RAI.

Elaine

wrote:

>

> >In 1998 I developed a second onset of Graves.

> >This time I have gained sixty pounds!!!!!

>

> Elaine,

>

> Were you taking anti-thyroid drugs at the time that you gained so much

> weight? I'm curious about this weight issue, because I have gained roughly

> 70 pounds over the last two years, despite the fact that (apparently) I had

> Graves' for much of that time. My disease was only diagnosed about 5 weeks

> ago.

>

[Guest guest]

Hi and -

I don't know enough about Dr. Stoll's remedies to comment on them. But, ,

I can't argue with your reasoning

about how medicine has messed up (like the crazy epidemic of hysterectomies in

the 70s). I just felt that I had to

say the problems I found with Dr. Stoll.

Take care,

Utecht

Hearn wrote:

> Hi my beauties, I have been reading the messages on Dr. Stoll. I keep on

> going back to

> the way that diabetics are treated. We are educated on how to live with

> a chronic disease.

> Except for a few others like Celiac, this is not the way of conventional

> medicine.

> I find this especially true for cancer people. They are treated and

> abandoned. The cancer gang is so damn focused on finding a cure they,

> for the most part, have forgotten that there must be a cause and that

> many could live a better life if the disease was treated as a chronic

> one. The medical establishment long fought to keep quackery out of it's

> ranks so it keeps a tight control on its members. Unfortunately, it has

> developed tunnel vision towards many things. For example RAI. It does

> not like doctors to break rank and Dr Stoll was not necessairly guilty

> of malpractice to lose his licence. That beinging said the man just

> might be a quack. But his remedies are surely not as dangerous as RAI.

>

>

> ------------------------------------------------------------------------

> Failed tests, classes skipped, forgotten locker combinations.

> Remember the good 'ol days

> http://click./1/4053/5/_/585824/_/959544712/

> ------------------------------------------------------------------------

>

> -------------------------------------

> The Graves' list is intended for informational purposes only and is not

intended to replace expert medical care.

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

> ----------------------------------------

[Guest guest]

I watch for problems with tremors as much as I do for palpitations.

While the endo appears more interested in palpitations my own

experience is that the first sign I might need more medication is

indication by problems with writing! Fine motor skills are quickly

affected by the tremors and even paying bills with checks becomes an

enormous chore. Talk to your doctor.

Elaine

" Ann McCrea, RN " wrote:

>

> <<Does anyone else have the trembling hands, but not the racing heart? I

> had

> the heart racing thing, but that's been gone awhile. The trembling went

> away, too, but it's been back for about a month!>>

>

> Kari,

> I have been having this same experience! The racing/pounding heart and the

> trembling went away, then this past week just the trembling returned.

> Weird.

>

[Guest guest]

Dear Debbie R.,

I'm so sorry to hear you're having all these problems, as an addendum

to your disease, what is enough in itself.

I would encourage you to take one thing at a time, but this is easier

said than done. You are there and all these troubles are affecting

you.

Anyway try to do your best and be a little egoist right now trying

to 'think of yourself' first and not to worry in excess. There is a

proverb I like, and I repeat to myself in some occassions:

" " Worrying doesn't empty tomorrow its troubles

" " It empties today of its strenght

Best luck and health to you

.

> Hi Everyone,

>

> I was reading about someones trembling hands returning. Well, my

trembling

> has returned, the racing heart, my pulse is up and blood pressure.

But, the

> last month I've been dealing with alot of stess and it basically

all started

> in the same week. My brother is going through a terrible divorce

that

> involves 4 minor children, his wife has internet boyfriends, found

out about

> my aunts breast cancer. Her status is: the tumor has shrunk to the

size of

> a grape but she is still going through the chemo, which starts

tomorrow.

> And my husband has had trouble with the new manager where he works,

he told

> my husband Friday, " When I worked at the gravel pit I'd just hit

the guys I

> didn't like with a pipe over the head when they came to, they knew

it was

> time to leave. " My husband asked if it was a threat and he just

walked

> away. So, I guess my husband is unemployed until he finds a job.

No job is

> worth this. It didn't help with everything, that I didn't take my

medicine

> for a week and cancelled my new endo appt., and can't get in until

July 5th.

> Everyone says, don't let those things bother you, but sometimes it

is hard.

> When you have a family who wants to be without a job or insurance.

We went

> through that no insurance thing, and paid dearly $75,000.00 worth,

and we

> all know endo visits aren't cheap and neither is the blood work.

We can

> carry our insurance for 18 months, but it is over $500.00 a month,

not that

> I am complaining it is very good insurance, no deductable, $15.00

per office

> visit, and somethings it costs us nothing and the insurance pays

100%.

> My son is going for delayed speech therapy and this is covered 100%

no cost

> to us. We pay about 175.00 per month out of our pay for dental and

medical.

>

> Hope everyone has a nice Memorial Day, it is out to start planting

the

> garden.

>

> Take care,

>

> Debbie R.

[Guest guest]

> 8. Dr. Stoll constantly flogs his book and his expensive " health

> coaching "

> at $2.50 per *minute* ! (By the way, shouldn't that be considered

> practicing medicine without a license?) Dr. Stoll says that, " The

> average

> charged time is 45-60 minutes " -- that's $112.50-$150 *out of

pocket*

> (since

> insurance won't cover it)! Not a bad income, even if he only gets

one

> call

> per day -- $54,750 per year at the higher daily rate. I wish I made

> that

> much money.

>

> There are many doctors who would not consider getting out of bed for

> $150.00 an hour.

> So we can't use lack of greed as a yardstick for a doctor.

> Why don't the insurance companies cover this?

From another Board:

<<<Hi! Has anyone out there consulted Dr. Dommisse?

published an interview with him several months ago. He does " tele-

medicine " (hope that's the right term), and seems to be up on the

latest, but I'm a bit concerned about his fees. I'm probably living

in the '70's (that's the last time I felt " normal " !), but he charges

$205 for an hour's consultation, then after tests, he charges app.

$20-$140 to read and analyse the test results! I know I'm probably

living in the dark ages, but all of my other doctors have considered

that a part of their consultation fee. If he's able to help me more

than they did, the cost will be worthwhile, but I'm a little nervous.

I would love to hear from anyone who has had success with him, or

anyone who can calm my fears about reasonable charges! Thanks!!! >>>

Hope NOBODY is going to start slandering Dommise now.

One is enough!

[Guest guest]

,

My new endo has promised that if 'tweaking' my TRH doesn't make me feel

better by October she will begin with T3 for me, but she stressed it is

still very experimental. I have yet to read from anyone on T3 that it has

been anything but beneficial (once through the adjustments and getting

dosage correct and timing of taking it etc.) It make me really question WHY

then so many of our endo's are hesitant or down right refuse to give it to

us...hmmmmmm kinda like my first 2 endos who INSISTED I could only take

synthroid...I suspect that many have quite a bit of investment in certain

drug companies. But then I am being really cynical lately.

I also believe my primary has investments in the *new miracle cureall*

prozac!!! He no longer trys to get me to take it, I absolutely refuse after

one endo put me on it to lose weight....ARGHHHHHHHHHHH.

Take care,

Jody

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[Guest guest]

>hmmmmmm kinda like my first 2 endos who INSISTED I could only take

synthroid...I suspect that many have quite a bit of investment in certain

drug companies. But then I am being really cynical lately.

No you're not! I think they're all on the take, too! The drug companies

give them samples to give to us, and they in turn must get some percentage,

every time they give us a prescription for the thing. It's

really...mob-like. I mean, I'm sure the doctors think it's all above board,

but they must know that we don't care if we have to pay an extra $15 for a

drug that will actually *work* for us, rather than something they'll get a

cut for! Or am I imagining things? I *know* my doctor prescribes things

for me that she's got samples of. (not for the Graves, however...just colds

and such...)

>I also believe my primary has investments in the *new miracle cureall*

prozac!!! He no longer trys to get me to take it, I absolutely refuse after

one endo put me on it to lose weight....ARGHHHHHHHHHHH.

Hmm...did it work? ;P I just can't seem to lose these 10 pounds. Ah, to

be Happy and skinny at the same time! ;P (again...)

Kari

[Guest guest]

>hmmmmmm kinda like my first 2 endos who INSISTED I could only take

synthroid...I suspect that many have quite a bit of investment in certain

drug companies. But then I am being really cynical lately.

No you're not! I think they're all on the take, too! The drug companies

give them samples to give to us, and they in turn must get some percentage,

every time they give us a prescription for the thing. It's

really...mob-like. I mean, I'm sure the doctors think it's all above board,

but they must know that we don't care if we have to pay an extra $15 for a

drug that will actually *work* for us, rather than something they'll get a

cut for! Or am I imagining things? I *know* my doctor prescribes things

for me that she's got samples of. (not for the Graves, however...just colds

and such...)

>I also believe my primary has investments in the *new miracle cureall*

prozac!!! He no longer trys to get me to take it, I absolutely refuse after

one endo put me on it to lose weight....ARGHHHHHHHHHHH.

Hmm...did it work? ;P I just can't seem to lose these 10 pounds. Ah, to

be Happy and skinny at the same time! ;P (again...)

Kari

[Guest guest]

Hi Jody-

They're probably reluctant to use T3 because it's gone so fast. It has a half

life of 3/4 of a day but for me

levels are really only high enough for a couple of hours. The T3 is still there

but it's not at a high enough level

for me to really benefit the rest of the time. On Armour, it seems to last

longer. I don't get the ups and downs

as severely as I did on Cytomel and Synthroid. However, I don't feel quite as

good as I did on C and S for just

those 2 hours after I take my T3. The rest of the time I feel better. I didn't

expect that and wonder if it's

because of the microcellulose in Armour. Maybe it delays absorption. Kind of

like a time-released pill.

I wonder too if they're reluctant to use T3 because the doctor can't really use

TSH to see how the patient is doing

any longer. TSH is much more sensitive than checking T3 and T4 levels. For

example, my TSH is 0.01 (that'd cause

most doctors to frantically reduce my dose) but my T3 and T4 levels are

mid-normal (on T4 only, my T4 levels were

high-normal, T3 levels were way under normal, and TSH was normal). My BP is now

125/70 and HR is 70-75. It took a

lot of experimenting to get me here and it was probably a pain in the butt for

the endo.

I don't think that most endos really have stock in Knoll (synthroid). It's just

much easier to take care of a

patient on Synthroid. The endo doesn't have to see them as often or spend as

much time with them when they do come

in.

If you have any questions about T3 I'd be happy to tell you both the good and

bad things about it.

Take care,

Jody Spitale wrote:

> ,

> My new endo has promised that if 'tweaking' my TRH doesn't make me feel

> better by October she will begin with T3 for me, but she stressed it is

> still very experimental. I have yet to read from anyone on T3 that it has

> been anything but beneficial (once through the adjustments and getting

> dosage correct and timing of taking it etc.) It make me really question WHY

> then so many of our endo's are hesitant or down right refuse to give it to

> us...hmmmmmm kinda like my first 2 endos who INSISTED I could only take

> synthroid...I suspect that many have quite a bit of investment in certain

> drug companies. But then I am being really cynical lately.

>

> I also believe my primary has investments in the *new miracle cureall*

> prozac!!! He no longer trys to get me to take it, I absolutely refuse after

> one endo put me on it to lose weight....ARGHHHHHHHHHHH.

> Take care,

> Jody

>

> ________________________________________________________________________

> Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com

>

>

>

> -------------------------------------

> The Graves' list is intended for informational purposes only and is not

intended to replace expert medical care.

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

> ----------------------------------------