New to Group

January 3, 2000

Dear Pippa:

First of all, welcom to the group!!!!! I was diagnosed hyper in

September of 1999. I have an appt. with my endo Wednsday to confirm

wether or not I have Grave's Disease. As far as having a short temper

and being irritable, I have found that this happens most of the time when

I am overly tired or stressed out. I am learning to recongnize when

it is happening, and lay down for a while when possible to do so.

I get up at 3:30 am to get ready for work, and yes, I have to eat as soon

as I get up. I never used to eat in the morning until at least 10

am!!!!!!!!!!!!!!

Pippa Freyer wrote:

Was just diagnosed with a hyperactive thyroid before

Christmas after I

lost 50lbs last year without trying, and now I'm on beta blockers

(120bpm resting down to 108bpm) and watching my blood pressure, but

I

see my family doctor tomorrow, probably to be referred to an

endocrinologist...was my family doc ever surprised when the test I

requested (thanks to Internet research) came back hyper but he couldn't

find any prior thyroid problems in my file!

My questions for the group:

1) Has anyone experienced emotional stress/loss triggering hyper? [i've

seen one or two 'observed but unproven' comments elsewhere and as I

just spent last year nursing my mother through terminal cancer, it

caught my attention. Smacks of blaming the victim to me, although I

realise there is a stress component..]

2) Is anyone offended by the medical attitude in some FAQ's? I found

this item particularly patronizing: http://home.ican.net/~thyroid/Guide

s/HG13.html [..but then again, I have been accused of being

doctor-phobic on occasion]

3) Any hyper nursing mothers experiences(good/bad)on weaning? Anyone

delayed/refused a treatment rather than wean?

4) Anyone hyper experienced post-traumatic stress disorder?

5) Is irritability and short temper a common symptom? (I hate it)

6) Does anyone have hyperglycemic-like reaction in the morning and HAVE

to eat as soon as they get up?

7) Anyone have to get up at 3:00am because they're too hungry

to last

until morning?

Glad to have found this group

Pippa

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January 3, 2000

> ) Has anyone experienced emotional stress/loss triggering hyper? [i've

> seen one or two 'observed but unproven' comments elsewhere and as I

> just spent last year nursing my mother through terminal cancer, it

> caught my attention. Smacks of blaming the victim to me, although I

> realise there is a stress component..]

I became hyper from working over a hundred hours a week, for long periods of

time..... my body started doing it all by itself.

> 2) Is anyone offended by the medical attitude in some FAQ's?

Most, but thankfully not all.

> 5) Is irritability and short temper a common symptom? (I hate it)

NO!!!! Grrrrrrrr...... ;-)

> 6) Does anyone have hyperglycemic-like reaction in the morning and HAVE

> to eat as soon as they get up?

Yes. Bananas work for me.

> 7) Anyone have to get up at 3:00am because they're too hungry to last

> until morning?

Sometimes....

For your next question,

Check out http://webhome.idirect.com/~wolfnowl/thyroid.htm Also be sure to read

the section on aspartame - very scary stuff!!

Me.

January 3, 2000

1) I actually gained 12

lbs being hyperthyroid. I've started losing the weight now that I'm on

Tapazole. I had the eye bulging, the trembling legs, goiter and bad

attitude. Your question about stress made me think. I was under stress

both at work and at home. It never seem to let up.

2) As for the medical

attitude, what really offends me is medical literature as well as listening

to md's, express the idea that RAI is some sort of godsend and destroying

someones body in anyway is taken so lightly. They don't treat it

with the seriousness I think it deserves. Do they take a leg with as cavalier

an attitude as I've seen shown regarding RAI? Why offer such a drastic

step first? I don't want to go that route at all so I'll try everything

else first. I mean once you've done RAI there's no going back -you're damaged

for life. So far my hormones came down to a normal level.My eyes

have receded somewhat and the goiter is going. I'm due back at the

endo late January so we'll see. I think the supplements are a good

idea, but I also would like to know the schedule in taking them.

5) The irritability gets

me down sometimes. I can rationally see there's nothing to be pissed

about yet emotionally I can't seem to help it. Everyone just seems to be

such a jerk!!

Thanks for putting me

in the group. I really needed something like this.

good luck and good health

to everyone.

Pippa Freyer wrote:

Was just diagnosed with a hyperactive thyroid before

Christmas after I

lost 50lbs last year without trying, and now I'm on beta blockers

(120bpm resting down to 108bpm) and watching my blood pressure, but

I

see my family doctor tomorrow, probably to be referred to an

endocrinologist...was my family doc ever surprised when the test I

requested (thanks to Internet research) came back hyper but he couldn't

find any prior thyroid problems in my file!

My questions for the group:

1) Has anyone experienced emotional stress/loss triggering hyper? [i've

seen one or two 'observed but unproven' comments elsewhere and as I

just spent last year nursing my mother through terminal cancer, it

caught my attention. Smacks of blaming the victim to me, although I

realise there is a stress component..]

2) Is anyone offended by the medical attitude in some FAQ's? I found

this item particularly patronizing: http://home.ican.net/~thyroid/Guide

s/HG13.html [..but then again, I have been accused of being

doctor-phobic on occasion]

3) Any hyper nursing mothers experiences(good/bad)on weaning? Anyone

delayed/refused a treatment rather than wean?

4) Anyone hyper experienced post-traumatic stress disorder?

5) Is irritability and short temper a common symptom? (I hate it)

6) Does anyone have hyperglycemic-like reaction in the morning and HAVE

to eat as soon as they get up?

7) Anyone have to get up at 3:00am because they're too hungry

to last

until morning?

Glad to have found this group

Pippa

------------------------------------------------------------------------

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or

want to breathe happier and healthier, we can help. Visit gazoontite.com

for the products, information and services you need to breathe easier.

1/396/5/_/6563/_/946937345

-- Create a poll/survey for your group!

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January 4, 2000

>

> 3) Any hyper nursing mothers experiences(good/bad)on weaning? Anyone

> delayed/refused a treatment rather than wean?

Pippa,

So glad you found this list before an endocrinologist has had the chance to

offer the three standard treatments for Graves disease (an autoimmune disease

which causes hyperthyroidism), if that is what you have, of hyperthyroidism of

any other etiology.

I'm screaming: WEANING WILL CHANGE THE COURSE OF YOUR HYPERTHYROIDISM. Do not

select a permanent treatment for hyperthyroidism (like radioactive iodine

treatment or surgery) without weaning your child. There are two important

things you should know: one, the toxicity of the drug commonly prescribed for

nursing mothers in the united states and two, the probable change in your

hyperthyroid state upon weaning.

1. I became hyperthyroid due to Graves disease shortly after the birth of my

second child. I tried antithyroid drugs. The drug used in the USA for nursing

women is PTU. Unfortunately, after a month on PTU, I discovered that the drug

is on the US Department of Health and Human Services' National Toxicity

Program/Report as a " probable carcinogen " causing cancer in rougly one in four

rats who were taking the drug for a prolonged period. I stumbled across this --

while nursing my daughter while taking this supposedly safe drug -- just as I

discovered that I was allergic to the drug.

2. A handful of women from the National Graves Disease Foundation responded to

one of my posts on their bulletin board. They each informed me that weaning

their children had had a dramatic effect on their hyperthyroidism. Four of the

five improved significantly upon weaning.

Based on this information, and my reluctance to radiate myself or remove a vital

organ, I decided to pursue homeopathy, acupuncture, naturopathy, etc. AND wean

my daughter.

Within three weeks of weaning, eating a macrobiotic diet, and under the care of

a homeopath, I was in remission.

Please email me and I will share more information about the homeopathy and

naturopathy. But I am committed to getting the word out to nursing mothers who

are hyperthyroid: weaning your child will change the course of your

hyperthyroidism.

Finally, I know that a decision to wean can be very painful and difficult. My

daughter was 9 months old and an avid nurser when I began receiving information

from other women about weaning and hyperthyroidism. I didn't wean her for four

months . . . basically, I waited until I felt she was more prepared, and I was

too. Still, it was painful for both of us. That said, weaning a child is often

emotional and a sort of parting of the ways. Weaning to recover (hopefully)

from hyperthyroidism may simply mean embarking on an inevitable process sooner

than anticipated.

I went those four months untreated, with the exception of the month I took PTU.

Anyway, send me an email if you would like more specifics on the homeopathy and

naturopathy.

petri001@...

January 4, 2000

In a message dated 1/3/00 5:38:42 PM EST, pippa.freyer@... writes:

<< 3) Any hyper nursing mothers experiences(good/bad)on weaning? Anyone

delayed/refused a treatment rather than wean? >>

Pippa,

I was pregnant while being treated with 300mg PTU and from the advice my

baby's neonatologist at birth, I breastfed her as I had all my other

children. She had a thorough thyroid check at birth and was perfectly 100%

perfect. I breastfed until she weaned herself at 13 months. When I was

still concerned, the neonatolgist brought in pediatric endocronologist and

talked to me. My baby is now 2 1/2 and is still developmentally fine.

Deb

January 4, 2000

i am new here and was wondering what doses you take with your tapazole ? i

have been on mine 10 yrs now and want to know who takes how much?..thanks...

nancy

January 4, 2000

Hi ,

I'm

new here too. I was diagnosed in May and started Tapazole 10 mg 2x daily.

After about 4months I went hypo; then it changed to odd/even days where

I took 10mg on odd and 10mg twice on even days. After another month I was

up to normal. Now I'm on 10mg once a day . I'm beginning to feel some of

the old symptoms again like palpatations and tiredness. I'm due at the

endo 1/24 so I guess I'll find out if I change my dose again. I started

supplements awhile ago but not to the degree mentioned on this site. I'll

gradually increase them as see how that goes.

Good luck

Katharine

Tackylady1@... wrote:

i am new here and was wondering what doses you take

with your tapazole ? i

have been on mine 10 yrs now and want to know who takes how much?..thanks...

nancy

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January 5, 2000

I am going off to the endo today, hopefully he will start me on

tapazole-I will mail the group with my results later today.

KH wrote:

> Part 1.1 Type: Plain Text (text/plain)

> Encoding: 7bit

May 17, 2000

In a message dated 5/17/2000 3:24:31 PM Eastern Daylight Time,

kaspkav@... writes:

<<

Date: 5/17/2000 3:24:31 PM Eastern Daylight Time >>

i am sorry that your husband has so many problems and too say the least the

medical care there isn't the greatest. so you have the ability to travel for

another opinion. the other option is to possibly send his mri and other

records overseas and get another opinion that way. as for alternative therepy

there are many ways to go but herbalists need to proceed with caution as it

can casue more harm than good. b vitamins are known to help in neurological

conditions so that maybe an option. also discussing the vagus nerve

stimulator for him . you said he take s 3 medicines a day with out relief.

what is he taking . there are alotof new drugs out that might be of help but

wonder if they are accessible in scotland. would like to help so let us know

where you are at with the drugs and i'll search to see if we can point you in

the right direction.

julie

May 17, 2000

Hi Anne,

My names and i have a daughter with intractable ep(uncontrolled)and we

live in Surrey.

What meds has your husband tried?

Harley has been on EPILIM,EPILIM CHRONO,LAMOTROGINE,ETHOSUXIMIDE,and is

currently on TOPIRIMATE/EPILIM CHRONO.

Initially,the Epilim worked wonders-though that wasn`t difficult!The

Lamotrogine made her really ill(ended up in hospital),and the Ethosuximide

did nothing!

She seems to be doing quite well(for her) on the Topirimate,though theres

still a long way to go i think.

Has your husband tried it?-there may be a problem getting it though,as it`s

relatively new (as ep meds go)and he might have trouble getting the NHS to

pay for it.

I also have a son with ep too,and he is on Epilim.-though i don`t think this

is helping him.

I`m so sorry that you seem to be having a rough time getting help,we are

lucky that we have a wonderful neuro,who gives me a lot of support,though

it`s probably different because they are children.

Has your husband had regular E.E.G`S?

It is very sad that they have written your husband off as a " hopeless

case " ,you will have to just keep pushing until they get so sick of you

they`ll hopefully do something.

My daughter is also a " hopeless case " ,but her Dr`s find this quite

" exciting " as they are " learning " from her!-she also has LANDAU KLEFFNER

SYNDROME.

I`m sorry if i havn`t really helped,but i am here if you ever need to

" vent " ,feel free to e-mail me personally if you want to.

Good luck,Take care-both of you,

,Harley and Marshall ;-)

kaspkav@... wrote:

> I've just been directed to the group by another member. My husband

> has epilepsy which is not controlled by the 3 drugs he takes. I live

> in the north of Scotland and frankly my husband's medical care is non

> existent - I have been told he is a hopeless case and not to hope for

> any improvement. What troubles me is that he really hasn't been

> medically evaluated in any way and it is unlikely that he will get

> any further medical assessment because of funding crisis in the

> National Health.

>

> I've read many of the messages but it seems a minefield to know where

> to start on making any changes to his regime, especially without the

> help of a doctor. I do know a good herbalist - would he be able to

> help?

>

> Also many of you seem to be in America and I suspect the medical care

> situation there is quite different from the U.K. because there's a

> lot of research going on.

>

> Is there anyone who can give me a starting point on the basis of the

> information I've given?

>

> Anne

>

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

> Accurate impartial advice on everything from laptops to table saws.

> 1/3020/9/_/442641/_/958591415/

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

>

> _

>

May 17, 2000

I'm in Wales. Have you spoken to the British Epilepsy Association, part of

what they do is to help you get the medical treatment you need.

Alternatively I have just started up a support group called Epilepsy - A

Holistic Approach, which has a newsletter covering various aspects which may

be of interest

Caroline

[ ] new to group

>I've just been directed to the group by another member. My husband

>has epilepsy which is not controlled by the 3 drugs he takes. I live

>in the north of Scotland and frankly my husband's medical care is non

>existent - I have been told he is a hopeless case and not to hope for

>any improvement. What troubles me is that he really hasn't been

>medically evaluated in any way and it is unlikely that he will get

>any further medical assessment because of funding crisis in the

>National Health.

>

>I've read many of the messages but it seems a minefield to know where

>to start on making any changes to his regime, especially without the

>help of a doctor. I do know a good herbalist - would he be able to

>help?

>

>Also many of you seem to be in America and I suspect the medical care

>situation there is quite different from the U.K. because there's a

>lot of research going on.

>

>Is there anyone who can give me a starting point on the basis of the

>information I've given?

>

>Anne

>

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

>Accurate impartial advice on everything from laptops to table saws.

>1/3020/9/_/442641/_/958591415/

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

>

>_

>

May 17, 2000

I'm in Wales. Have you spoken to the British Epilepsy Association, part of

what they do is to help you get the medical treatment you need.

Alternatively I have just started up a support group called Epilepsy - A

Holistic Approach, which has a newsletter covering various aspects which may

be of interest, and have also written a book of the same name.

Caroline

[ ] new to group

>I've just been directed to the group by another member. My husband

>has epilepsy which is not controlled by the 3 drugs he takes. I live

>in the north of Scotland and frankly my husband's medical care is non

>existent - I have been told he is a hopeless case and not to hope for

>any improvement. What troubles me is that he really hasn't been

>medically evaluated in any way and it is unlikely that he will get

>any further medical assessment because of funding crisis in the

>National Health.

>

>I've read many of the messages but it seems a minefield to know where

>to start on making any changes to his regime, especially without the

>help of a doctor. I do know a good herbalist - would he be able to

>help?

>

>Also many of you seem to be in America and I suspect the medical care

>situation there is quite different from the U.K. because there's a

>lot of research going on.

>

>Is there anyone who can give me a starting point on the basis of the

>information I've given?

>

>Anne

>

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

>Accurate impartial advice on everything from laptops to table saws.

>1/3020/9/_/442641/_/958591415/

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

>

>_

>

May 17, 2000

Caroline,

I am interested in the name of the holistic epilepsy group. Or how to sub.

> I'm in Wales. Have you spoken to the British Epilepsy Association, part of

> what they do is to help you get the medical treatment you need.

> Alternatively I have just started up a support group called Epilepsy - A

> Holistic Approach, which has a newsletter covering various aspects which

may

> be of interest, and have also written a book of the same name.

>

> Caroline

May 17, 2000

, and all

Why do you say this? Is it epilepsy related or just your caution in general

because you are uncomfortable with it? My father has ep and hasn't found a

drug to control it. But a new holistic doctor tested his hormones and found

them out of balance--it has helped some to work on the hormones but he isn't

done with it yet. Most doctors that I know don't even consider looking at

hormone balance for most diseases.

> as for alternative therepy

> there are many ways to go but herbalists need to proceed with caution as

it

> can casue more harm than good.

May 18, 2000

, are you in the UK, if so I can send you a form. Alternatively, I have

put some articles at www.wordarchive.com, just put epilepsy in their search

engine and it will come up with a list of articles, I intend to add to this

regularly. I must admit that some of the information comes from this mailing

list (with permission of the author).

Thanks

Caroline

Re: [ ] new to group

>Caroline,

>I am interested in the name of the holistic epilepsy group. Or how to sub.

>

>> I'm in Wales. Have you spoken to the British Epilepsy Association, part

of

>> what they do is to help you get the medical treatment you need.

>> Alternatively I have just started up a support group called Epilepsy - A

>> Holistic Approach, which has a newsletter covering various aspects which

>may

>> be of interest, and have also written a book of the same name.

>>

>> Caroline

>

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

>Old school buds here:

>1/4057/9/_/442641/_/958612490/

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

>

>_

>

May 24, 2000

Hi Ron:

May 24, 2000

Hi Ron:

May 24, 2000

Hi Ron:

May 24, 2000

Hi Ron:

May 24, 2000

In a message dated 5/24/00 6:03:09 PM Pacific Daylight Time, rlmbkm@...

writes:

Hi Ron:

Good luck with treatment, and get a lot of rest.

Take care,

Les

<< Main question whwt do you all do about being so tired all the time?

Ron.

>>

May 24, 2000

In a message dated 5/24/00 6:03:09 PM Pacific Daylight Time, rlmbkm@...

writes:

Hi Ron:

Good luck with treatment, and get a lot of rest.

Take care,

Les

<< Main question whwt do you all do about being so tired all the time?

Ron.

>>

May 24, 2000

Dear Ron,

Welcome to the group.

What a question!!! Fatigue has to be the number 1 complaint we all

have. I wish there was some miracle cure for it. People (family, friends,

etc.) just don't seem to understand how debilitating the fatigue can be.

Me, I just try to sleep when I'm tired, and make sure I get some exercise

too. I really think the exercise is important, even though I usually have to

force myself! Make sure you are eating enough protein too. I have a real

tendency to slide on my protein foods, and every time I'll notice that the

fatigue is worse. You may find that the medicines will cause insomnia.

That plus the fatigue is a bad combination. Let your doctor know you're

having a problem. Something to help you sleep, or sometimes

antidepressants, can really help a lot.

Good luck on your first dose. Take care,'

Claudine

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May 24, 2000