Re: My Story

[Guest guest]

Hi ,

So glad you found us here at this forum. Your story sounds SO familiar. I was

sure I had Parkinson's too. I have been in normal ranges now for almost a year

and a half, but I still have times when my heart pounds and races for no good

reason. The atenolol has been one of the best things I've ever used...now when I

have a stressful situation, my Endo says to just take the beta blocker or a half

of one because it really isn't good for my heart to be so overworked. I learned

that people often take Atenolol or Propanolol for stage fright....I heard Barbra

Streisand never performs without it. It sounds as tho you are on the right track

now that they have tested your thyroid levels.....it may take several weeks, but

it WILL get better, and in the meantime, vent all you want here...we've all been

in the same place. Take care,

Ruthie

My Story

Ok, I guess if I'm going to be posting here, I should share my story.

Thyroid disease does run in my family, and I'm thinking not just on

one side, but both.

I have suffered from a painful disease called Hidradenitis

Suppurativa since I was 12 years old (it is a hereditary disease

too). HS causes boil-like lesions on the sweat gland area of your

body. I've been treated here and there over the years. About 5

years ago, things with HS really got out of hand. I finally went to

a dermatologist back in the summer (I had to let my MD treat me

first - to no avail) because I was in such pain, I couldn't even walk

and I was on pain-killers and I had to try something. His treatment

plan worked the a charm, except for 2 boils that got so out of

control, they needed to be removed. So, I had that surgery done Feb.

1 and it took until March to heal.

Meanwhile, last year, I started having panic attacks and anxiety. I

was terrified of falling asleep, thinking I would die. As I would

fall asleep, it felt like I was drowning and I'd wake back up. This

went on all nite. My MD put me on Effexor XR. (Let me say that

since moving to IN 2 years ago, I felt like there was something wrong

with my health - I couldn't pin-point anything it's just that I

didn't feel good). I had been going through a lot of stress at the

time - my youngest dd at the time 7 was having some medical

problems. She's ok now, but this went on from Aug. to Jan.

Now it's March 1st and I decide to quit smoking. And I plan on

losing weight. I want my body to feel better. With the boils gone,

I can move without pain. Yahoo! So I slap the nicotine patch on.

After 3 weeks, I feel so shakey. I cut back on my caffeine (which is

only 2 servings per day) and try to stop taking sudafed. It doesn't

help. So, I step down on the patch to 14mg. I still feel shakey but

I put up with it. At this point, I shake so bad I can hardly write

and when I'm kneeling at church, I can feel my head shake too - I

wonder if I have Parkinson's b/c my granddad did. I also noticed

that I skipped a period and have been off since January. By mid

April, I'm down to 7mg and still feeling bad. I'm really noticing my

heart beat now too. So I go in to see MD on April 25. He tells me

to stop the patch totally. I tell him my heart keeps beating fast,

I'm so shakey, and I sweat so bad and feel hot all the time. Gee

doc, it's 102 bpm resting - is that normal? (Duh). He feels my neck

and ask if there is a history of thyroid problems in my family. I

tell him I want to go off the Effexor (effexor is known to cause a

rapid rate beat). He tells me if I'm feeling so hystarical, he

should *increase* my dose!! Ack! I could smack him! He argues with

me that if Effexor didn't cause me problems before, it should now. I

have two letters from Pharmacist that says otherwise. Any way, he

tells me to stop all stimulants and maybe (if I keep complaining)

he'll check my thyroid but sends me on home. So, I stop the patch

like he says. I'm also hoping that our insurance now covers more

doctors in my area so I can find someone else. I call his office on

Monday. I did like he said, but my heart is still pounding and

racing, I'm trembling and sweating so bad. Stopping the patch didn't

make a difference. So, his nurse calls back that night and tells me

doc wants to put me on heart medicine to slow down my heart. I tell

her no thanks. (I freaked out when she said this - she didn't

explain herself). So, I go see a Stat Care doctor the next morning.

He's an idiot, but at least I got what I wanted - he told me how to

wean off the Effexor and gave me a lower dose to do so, and he

switched my allergy medicine. Later that day, doc other nurse calls

me. Begs me to take the heart medicine (Atenolol). She explains how

it's no good for my heart to beat that fast, etc. She is really

nice. I tell her I feel like doc isn't doing anything to help me.

She says he's going to have me put on a heart monitor (24hr) and she

made an appt. for me to see him in 3 weeks - that appt. is for

tomorrow. So, he leaves me in the cold. Then I decide to see a D.O.

who is a female. Right away, she sends me down for blood work. She

too asks about thyroid disease. But, she *does* something about it.

Turns out my TSH is .01 so she refers me to an Endo. She switchs me

to Inderal because the Atenolol doesn't seem to be working. He can't

see me until June 6th. I call myself the next day and speak to his

nurse. She got me in the next day. When I meet her the next day, I

thank her again and she tells me her mom has hyperT.

So, Endo wants to do an uptake scan. I'm suppose to have it

tomorrow. My T4 is 15.9 (H), TU3 is normal, and FTI(T7) is 22.76

(H). He tells me I can't start methizole until after the test. Then

I read that he could test for antibodies and I wouldn't need the

test. Since Monday, I've been feeling sooooo awful. I'm dizzy,

nauseated and exhausted. I can't do any thing around the house. And

my lips and mouth feel tingly. I'm totally off of the Effexor now.

I'm so droggy and out of it and weak. All I seem to do is cry. And

talk about erractic behavior - my gosh, I surprize myself. I lost 10

lbs. in a weeks time. The Inderal seems to help more, but I think

it's making me dizzy, etc. So, I'm waiting for the Endo to call.

I'm angry and sad. I want to be at my dd's school's but I'm just too

tired. It makes me feel so guilty. We're totally out of food but

I'm afraid to drive, I'm afraid to be out in public - what if I pass

out or something.

So, that's my story. I've been doing a lot of reading and research

lately. I'm so glad Jody told me about this board. If no one reads

it, that's ok because I feel so much better finally talking about

what all has happened to me.

God Bless,

[Guest guest]

,

I live in Indiana too. Who are the doctors that I should definitely avoid?

(Are you going to docs in the Indianapolis area?) It sounds like you've had

some absolutely horrible experiences. I sincerely hope that things improve

for you.

Reply-To: graves_support

Date: Wed, 22 May 2002 14:24:19 -0000

To: graves_support

Subject: My Story

Ok, I guess if I'm going to be posting here, I should share my story.

Thyroid disease does run in my family, and I'm thinking not just on

one side, but both.

I have suffered from a painful disease called Hidradenitis

Suppurativa since I was 12 years old (it is a hereditary disease

too). HS causes boil-like lesions on the sweat gland area of your

body. I've been treated here and there over the years. About 5

years ago, things with HS really got out of hand. I finally went to

a dermatologist back in the summer (I had to let my MD treat me

first - to no avail) because I was in such pain, I couldn't even walk

and I was on pain-killers and I had to try something. His treatment

plan worked the a charm, except for 2 boils that got so out of

control, they needed to be removed. So, I had that surgery done Feb.

1 and it took until March to heal.

Meanwhile, last year, I started having panic attacks and anxiety. I

was terrified of falling asleep, thinking I would die. As I would

fall asleep, it felt like I was drowning and I'd wake back up. This

went on all nite. My MD put me on Effexor XR. (Let me say that

since moving to IN 2 years ago, I felt like there was something wrong

with my health - I couldn't pin-point anything it's just that I

didn't feel good). I had been going through a lot of stress at the

time - my youngest dd at the time 7 was having some medical

problems. She's ok now, but this went on from Aug. to Jan.

Now it's March 1st and I decide to quit smoking. And I plan on

losing weight. I want my body to feel better. With the boils gone,

I can move without pain. Yahoo! So I slap the nicotine patch on.

After 3 weeks, I feel so shakey. I cut back on my caffeine (which is

only 2 servings per day) and try to stop taking sudafed. It doesn't

help. So, I step down on the patch to 14mg. I still feel shakey but

I put up with it. At this point, I shake so bad I can hardly write

and when I'm kneeling at church, I can feel my head shake too - I

wonder if I have Parkinson's b/c my granddad did. I also noticed

that I skipped a period and have been off since January. By mid

April, I'm down to 7mg and still feeling bad. I'm really noticing my

heart beat now too. So I go in to see MD on April 25. He tells me

to stop the patch totally. I tell him my heart keeps beating fast,

I'm so shakey, and I sweat so bad and feel hot all the time. Gee

doc, it's 102 bpm resting - is that normal? (Duh). He feels my neck

and ask if there is a history of thyroid problems in my family. I

tell him I want to go off the Effexor (effexor is known to cause a

rapid rate beat). He tells me if I'm feeling so hystarical, he

should *increase* my dose!! Ack! I could smack him! He argues with

me that if Effexor didn't cause me problems before, it should now. I

have two letters from Pharmacist that says otherwise. Any way, he

tells me to stop all stimulants and maybe (if I keep complaining)

he'll check my thyroid but sends me on home. So, I stop the patch

like he says. I'm also hoping that our insurance now covers more

doctors in my area so I can find someone else. I call his office on

Monday. I did like he said, but my heart is still pounding and

racing, I'm trembling and sweating so bad. Stopping the patch didn't

make a difference. So, his nurse calls back that night and tells me

doc wants to put me on heart medicine to slow down my heart. I tell

her no thanks. (I freaked out when she said this - she didn't

explain herself). So, I go see a Stat Care doctor the next morning.

He's an idiot, but at least I got what I wanted - he told me how to

wean off the Effexor and gave me a lower dose to do so, and he

switched my allergy medicine. Later that day, doc other nurse calls

me. Begs me to take the heart medicine (Atenolol). She explains how

it's no good for my heart to beat that fast, etc. She is really

nice. I tell her I feel like doc isn't doing anything to help me.

She says he's going to have me put on a heart monitor (24hr) and she

made an appt. for me to see him in 3 weeks - that appt. is for

tomorrow. So, he leaves me in the cold. Then I decide to see a D.O.

who is a female. Right away, she sends me down for blood work. She

too asks about thyroid disease. But, she *does* something about it.

Turns out my TSH is .01 so she refers me to an Endo. She switchs me

to Inderal because the Atenolol doesn't seem to be working. He can't

see me until June 6th. I call myself the next day and speak to his

nurse. She got me in the next day. When I meet her the next day, I

thank her again and she tells me her mom has hyperT.

So, Endo wants to do an uptake scan. I'm suppose to have it

tomorrow. My T4 is 15.9 (H), TU3 is normal, and FTI(T7) is 22.76

(H). He tells me I can't start methizole until after the test. Then

I read that he could test for antibodies and I wouldn't need the

test. Since Monday, I've been feeling sooooo awful. I'm dizzy,

nauseated and exhausted. I can't do any thing around the house. And

my lips and mouth feel tingly. I'm totally off of the Effexor now.

I'm so droggy and out of it and weak. All I seem to do is cry. And

talk about erractic behavior - my gosh, I surprize myself. I lost 10

lbs. in a weeks time. The Inderal seems to help more, but I think

it's making me dizzy, etc. So, I'm waiting for the Endo to call.

I'm angry and sad. I want to be at my dd's school's but I'm just too

tired. It makes me feel so guilty. We're totally out of food but

I'm afraid to drive, I'm afraid to be out in public - what if I pass

out or something.

So, that's my story. I've been doing a lot of reading and research

lately. I'm so glad Jody told me about this board. If no one reads

it, that's ok because I feel so much better finally talking about

what all has happened to me.

God Bless,

[Guest guest]

,

I live in Indiana too. Who are the doctors that I should definitely avoid?

(Are you going to docs in the Indianapolis area?) It sounds like you've had

some absolutely horrible experiences. I sincerely hope that things improve

for you.

Reply-To: graves_support

Date: Wed, 22 May 2002 14:24:19 -0000

To: graves_support

Subject: My Story

Ok, I guess if I'm going to be posting here, I should share my story.

Thyroid disease does run in my family, and I'm thinking not just on

one side, but both.

I have suffered from a painful disease called Hidradenitis

Suppurativa since I was 12 years old (it is a hereditary disease

too). HS causes boil-like lesions on the sweat gland area of your

body. I've been treated here and there over the years. About 5

years ago, things with HS really got out of hand. I finally went to

a dermatologist back in the summer (I had to let my MD treat me

first - to no avail) because I was in such pain, I couldn't even walk

and I was on pain-killers and I had to try something. His treatment

plan worked the a charm, except for 2 boils that got so out of

control, they needed to be removed. So, I had that surgery done Feb.

1 and it took until March to heal.

Meanwhile, last year, I started having panic attacks and anxiety. I

was terrified of falling asleep, thinking I would die. As I would

fall asleep, it felt like I was drowning and I'd wake back up. This

went on all nite. My MD put me on Effexor XR. (Let me say that

since moving to IN 2 years ago, I felt like there was something wrong

with my health - I couldn't pin-point anything it's just that I

didn't feel good). I had been going through a lot of stress at the

time - my youngest dd at the time 7 was having some medical

problems. She's ok now, but this went on from Aug. to Jan.

Now it's March 1st and I decide to quit smoking. And I plan on

losing weight. I want my body to feel better. With the boils gone,

I can move without pain. Yahoo! So I slap the nicotine patch on.

After 3 weeks, I feel so shakey. I cut back on my caffeine (which is

only 2 servings per day) and try to stop taking sudafed. It doesn't

help. So, I step down on the patch to 14mg. I still feel shakey but

I put up with it. At this point, I shake so bad I can hardly write

and when I'm kneeling at church, I can feel my head shake too - I

wonder if I have Parkinson's b/c my granddad did. I also noticed

that I skipped a period and have been off since January. By mid

April, I'm down to 7mg and still feeling bad. I'm really noticing my

heart beat now too. So I go in to see MD on April 25. He tells me

to stop the patch totally. I tell him my heart keeps beating fast,

I'm so shakey, and I sweat so bad and feel hot all the time. Gee

doc, it's 102 bpm resting - is that normal? (Duh). He feels my neck

and ask if there is a history of thyroid problems in my family. I

tell him I want to go off the Effexor (effexor is known to cause a

rapid rate beat). He tells me if I'm feeling so hystarical, he

should *increase* my dose!! Ack! I could smack him! He argues with

me that if Effexor didn't cause me problems before, it should now. I

have two letters from Pharmacist that says otherwise. Any way, he

tells me to stop all stimulants and maybe (if I keep complaining)

he'll check my thyroid but sends me on home. So, I stop the patch

like he says. I'm also hoping that our insurance now covers more

doctors in my area so I can find someone else. I call his office on

Monday. I did like he said, but my heart is still pounding and

racing, I'm trembling and sweating so bad. Stopping the patch didn't

make a difference. So, his nurse calls back that night and tells me

doc wants to put me on heart medicine to slow down my heart. I tell

her no thanks. (I freaked out when she said this - she didn't

explain herself). So, I go see a Stat Care doctor the next morning.

He's an idiot, but at least I got what I wanted - he told me how to

wean off the Effexor and gave me a lower dose to do so, and he

switched my allergy medicine. Later that day, doc other nurse calls

me. Begs me to take the heart medicine (Atenolol). She explains how

it's no good for my heart to beat that fast, etc. She is really

nice. I tell her I feel like doc isn't doing anything to help me.

She says he's going to have me put on a heart monitor (24hr) and she

made an appt. for me to see him in 3 weeks - that appt. is for

tomorrow. So, he leaves me in the cold. Then I decide to see a D.O.

who is a female. Right away, she sends me down for blood work. She

too asks about thyroid disease. But, she *does* something about it.

Turns out my TSH is .01 so she refers me to an Endo. She switchs me

to Inderal because the Atenolol doesn't seem to be working. He can't

see me until June 6th. I call myself the next day and speak to his

nurse. She got me in the next day. When I meet her the next day, I

thank her again and she tells me her mom has hyperT.

So, Endo wants to do an uptake scan. I'm suppose to have it

tomorrow. My T4 is 15.9 (H), TU3 is normal, and FTI(T7) is 22.76

(H). He tells me I can't start methizole until after the test. Then

I read that he could test for antibodies and I wouldn't need the

test. Since Monday, I've been feeling sooooo awful. I'm dizzy,

nauseated and exhausted. I can't do any thing around the house. And

my lips and mouth feel tingly. I'm totally off of the Effexor now.

I'm so droggy and out of it and weak. All I seem to do is cry. And

talk about erractic behavior - my gosh, I surprize myself. I lost 10

lbs. in a weeks time. The Inderal seems to help more, but I think

it's making me dizzy, etc. So, I'm waiting for the Endo to call.

I'm angry and sad. I want to be at my dd's school's but I'm just too

tired. It makes me feel so guilty. We're totally out of food but

I'm afraid to drive, I'm afraid to be out in public - what if I pass

out or something.

So, that's my story. I've been doing a lot of reading and research

lately. I'm so glad Jody told me about this board. If no one reads

it, that's ok because I feel so much better finally talking about

what all has happened to me.

God Bless,

[Guest guest]

Hi ,

I'm in the Ft. Wayne area. My ins. only covers two Endo's. Plus, I

think they are the only Endo's in town.

> ,

>

> I live in Indiana too. Who are the doctors that I should

definitely avoid?

> (Are you going to docs in the Indianapolis area?) It sounds like

you've had

> some absolutely horrible experiences. I sincerely hope that things

improve

> for you.

>

>

>

>

> From: " txinmommy " <babe61584@y...>

> Reply-To: graves_support@y...

> Date: Wed, 22 May 2002 14:24:19 -0000

> To: graves_support@y...

> Subject: My Story

>

>

> Ok, I guess if I'm going to be posting here, I should share my

story.

>

> Thyroid disease does run in my family, and I'm thinking not just on

> one side, but both.

>

> I have suffered from a painful disease called Hidradenitis

> Suppurativa since I was 12 years old (it is a hereditary disease

> too). HS causes boil-like lesions on the sweat gland area of your

> body. I've been treated here and there over the years. About 5

> years ago, things with HS really got out of hand. I finally went to

> a dermatologist back in the summer (I had to let my MD treat me

> first - to no avail) because I was in such pain, I couldn't even

walk

> and I was on pain-killers and I had to try something. His treatment

> plan worked the a charm, except for 2 boils that got so out of

> control, they needed to be removed. So, I had that surgery done

Feb.

> 1 and it took until March to heal.

>

> Meanwhile, last year, I started having panic attacks and anxiety. I

> was terrified of falling asleep, thinking I would die. As I would

> fall asleep, it felt like I was drowning and I'd wake back up. This

> went on all nite. My MD put me on Effexor XR. (Let me say that

> since moving to IN 2 years ago, I felt like there was something

wrong

> with my health - I couldn't pin-point anything it's just that I

> didn't feel good). I had been going through a lot of stress at the

> time - my youngest dd at the time 7 was having some medical

> problems. She's ok now, but this went on from Aug. to Jan.

>

> Now it's March 1st and I decide to quit smoking. And I plan on

> losing weight. I want my body to feel better. With the boils gone,

> I can move without pain. Yahoo! So I slap the nicotine patch on.

> After 3 weeks, I feel so shakey. I cut back on my caffeine (which

is

> only 2 servings per day) and try to stop taking sudafed. It doesn't

> help. So, I step down on the patch to 14mg. I still feel shakey

but

> I put up with it. At this point, I shake so bad I can hardly write

> and when I'm kneeling at church, I can feel my head shake too - I

> wonder if I have Parkinson's b/c my granddad did. I also noticed

> that I skipped a period and have been off since January. By mid

> April, I'm down to 7mg and still feeling bad. I'm really noticing

my

> heart beat now too. So I go in to see MD on April 25. He tells me

> to stop the patch totally. I tell him my heart keeps beating fast,

> I'm so shakey, and I sweat so bad and feel hot all the time. Gee

> doc, it's 102 bpm resting - is that normal? (Duh). He feels my neck

> and ask if there is a history of thyroid problems in my family. I

> tell him I want to go off the Effexor (effexor is known to cause a

> rapid rate beat). He tells me if I'm feeling so hystarical, he

> should *increase* my dose!! Ack! I could smack him! He argues with

> me that if Effexor didn't cause me problems before, it should now.

I

> have two letters from Pharmacist that says otherwise. Any way, he

> tells me to stop all stimulants and maybe (if I keep complaining)

> he'll check my thyroid but sends me on home. So, I stop the patch

> like he says. I'm also hoping that our insurance now covers more

> doctors in my area so I can find someone else. I call his office on

> Monday. I did like he said, but my heart is still pounding and

> racing, I'm trembling and sweating so bad. Stopping the patch

didn't

> make a difference. So, his nurse calls back that night and tells me

> doc wants to put me on heart medicine to slow down my heart. I tell

> her no thanks. (I freaked out when she said this - she didn't

> explain herself). So, I go see a Stat Care doctor the next morning.

> He's an idiot, but at least I got what I wanted - he told me how to

> wean off the Effexor and gave me a lower dose to do so, and he

> switched my allergy medicine. Later that day, doc other nurse calls

> me. Begs me to take the heart medicine (Atenolol). She explains

how

> it's no good for my heart to beat that fast, etc. She is really

> nice. I tell her I feel like doc isn't doing anything to help me.

> She says he's going to have me put on a heart monitor (24hr) and she

> made an appt. for me to see him in 3 weeks - that appt. is for

> tomorrow. So, he leaves me in the cold. Then I decide to see a

D.O.

> who is a female. Right away, she sends me down for blood work. She

> too asks about thyroid disease. But, she *does* something about it.

> Turns out my TSH is .01 so she refers me to an Endo. She switchs me

> to Inderal because the Atenolol doesn't seem to be working. He can't

> see me until June 6th. I call myself the next day and speak to his

> nurse. She got me in the next day. When I meet her the next day, I

> thank her again and she tells me her mom has hyperT.

>

> So, Endo wants to do an uptake scan. I'm suppose to have it

> tomorrow. My T4 is 15.9 (H), TU3 is normal, and FTI(T7) is 22.76

> (H). He tells me I can't start methizole until after the test.

Then

> I read that he could test for antibodies and I wouldn't need the

> test. Since Monday, I've been feeling sooooo awful. I'm dizzy,

> nauseated and exhausted. I can't do any thing around the house.

And

> my lips and mouth feel tingly. I'm totally off of the Effexor now.

> I'm so droggy and out of it and weak. All I seem to do is cry. And

> talk about erractic behavior - my gosh, I surprize myself. I lost 10

> lbs. in a weeks time. The Inderal seems to help more, but I think

> it's making me dizzy, etc. So, I'm waiting for the Endo to call.

>

> I'm angry and sad. I want to be at my dd's school's but I'm just

too

> tired. It makes me feel so guilty. We're totally out of food but

> I'm afraid to drive, I'm afraid to be out in public - what if I pass

> out or something.

>

> So, that's my story. I've been doing a lot of reading and research

> lately. I'm so glad Jody told me about this board. If no one reads

> it, that's ok because I feel so much better finally talking about

> what all has happened to me.

>

> God Bless,

>

>

>

>

>

>

[Guest guest]

Pam,

This a wonderful website and I shall recommend it to all of the new people I

hear from. Thank you so much for sharing all of this, and for all the new

lessons we learn!

Jody

_________________________________________________________________

Join the world’s largest e-mail service with MSN Hotmail.

http://www.hotmail.com

[Guest guest]

Melvin,

Thanks so much for writing! The more we hear about these alternative

appraoches, the more information and possibilties appear. People DO get

well without using conventional medicine -- not often, but it happens. I

think it's a lot of work, money, and time, and that alone minimizes the

possibility of success.

As for your adverse reaction to methimazole -- I had a pretty serious

adverse reaction to PTU and my endo told me that I couldn't take any ATDs

and should have RAI or surgery.

When I had a consult at the Mayo Clinic, the endocrinologist there told me

that, for him, an adverse reaction to one drug does not necessarily rule out

the other. He said he would've let me try another ATD. Now that was with

an adverse reaction to PTU, and not Methimazole -- I don't know if it woudl

work the other way around?

Just thought I'd pass that on and welcome!

B

My story

> Hi all,

>

> What an amazing and supportive group! I read Elaine's book and found

> the group listed there and have been absorbing the postings for 3

> weeks. I am pursuing both medical and alternative approaches to my

> GD - trying to keep an open mind to both. Perhaps, I'm lucky; my

> major symptom, which was extreme and debilitating double vision, has

> 'gone away' - I could only see for a distance of 2 feet! In March it

> took doctors 3 weeks to diagnose the GD (I had fallen and hit my head

> 2 weeks previous to the symptoms) and they did vision tests, CAT cans,

> MRI's and Neurological Exams before blood tests indicated Thyroid

> problems. My TSH is less than .02. I do show many 'constitutional'

> symptoms (tremors, sleep and elimination patterns, tinnitus,

> irritability!, 'brain haze' and fatigue at night, heat sensitivity,

> sweating, etc.). My family doctor had tested me for Hyperthyroids

> twice previously (I didn't know it - it was part of my annual

> physical) but results were negative.

>

> My endo prescribed Methimazole; but I had severe adverse reactions to

> it - twice: once full body muscle aches; then full body itchiness

> (both awful)! Now, he refuses to try me on PTU and scheduled me for

> an RAI. I cancelled and have an appointment next month with another

> endo - one who sees few patients and does research (got in through a

> nurse friend of my wife's). I will ask him about antibody tests; and,

> of course, PTU. I will also ask: what percentage of people who have

> RAI do or do not experience problems - short term and long term? And,

> if I had a reaction to Methimazole, am I more prone to an adverse

> reaction to RAI? Any advice on other questions to ask?

>

> Alternatively, even before my diagnosis was made I went to an

> osteopath (for the double vision). She did cranial sacral

> manipulation, prescribed more protein based on kineseology, gave me

> shoe lifts for my posture, and (here it comes...) gave me bovine (as

> in 'cows') eye extract. As I said my double vision cleared up before

> the doctors even knew what was going on. (No one can prove whether

> her treatments actually helped; according to the doctors, such

> symptoms often spontaneously remiss.)

>

> Anyway, I am off the eye extract and continue the cranial sacral. Now

> she has me taking a homeopathic combination remedy called, Detoxosode;

> she told me it would do a cleansing of sorts; the bottle says it is

> for Viruses. I am also taking a Mineral Tranquilizer supplement,

> mostly calcium & magnesium - used for hyperkinetic people, insomnia

> and irritability. She also has me taking a supplement called

> Thytrophin PMG; it is made from bovine thyroid extract (processed to

> remove the thyroxine). It is a protomorphogen extract, and supposedly

> acts as a decoy for the antibodies to 'attact it' rather than the

> Thyroid gland. It's only been 2 weeks and I feel no different. We're

> gonna try it for 2 months and do another T3, T4, TSH test. Anyone out

> there know anything about this? By the way, these supplements are

> available only through health care professionals; I'm not recommending

> them; I'm only saying that, if you want to check them out, you'll need

> to contact someone who practices alternative 'medicine' and

> 'prescribes' to this line of thinking.

>

> It's hard to keep up with all the postings and I feel a little guilty

> writing such a long one. I'm both hopeful and worried. Thanks for

> caring.

>

> Melvin in Maine

>

>

>

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

> 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.

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

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>

> Advertisments placed on this yahoo groups list do not have the endorsement

of

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>

[Guest guest]

Hi Melvin,

Welcome to this group! We do have several men here now, but most don't

post, or post often. Simon is the exception and a wonderful person with his

view on this disease and treatment.

>>>I read Elaine's book and found the group listed there and have been

>>>absorbing the postings for 3 weeks. I am pursuing both medical and

>>>alternative approaches to my GD - trying to keep an open mind to both.

>>>Perhaps, I'm lucky; my major symptom, which was extreme and debilitating

>>>double vision, has 'gone away' - I could only see for a distance of 2

>>>feet!<<<

In the file section of this group, you will find 2 things that may be

beneficial to you. One is the Extended Symptoms List, which is much

lengthier than any the doctors use and may explain symptoms that have been

dismissed as thyroid related. With input from many in this group, Terry

ding broke the list down in categories and put it together. It really is

wonderful.

The second one you may want to print out is the Eye Exercises. These are

the eye exercises my ophtho gave me, which I continue to do. It helped with

my double vision a lot. I know your double vision is now gone, but maybe

doing the exercises will prevent it from coming back somewhere down the

road.

>>>My family doctor had tested me for Hyperthyroidstwice previously (I

>>>didn't know it - it was part of my annualphysical) but results were

>>>negative.<<<

The fact that he was doing one as part of your annual is a big HOORAY for

him! I do wonder if he was using just the TSH as a marker though. To really

see what is going on with the thyroid the Free T3 and Free T4 are the best

of the bunch. The TSH is a test of the pituitary, which is sometimes good

for diagnosis, but from there on out, it is usuless, in my opinion.

>>>My endo prescribed Methimazole; but I had severe adverse reactions toit -

>>>twice: once full body muscle aches; then full body itchiness

(both awful)!<<<

I have not heard of the full body muscle aches as being a reaction to atd's.

I do know that Graves itself can be very debilitating on our muscles. If

we are not getting enough protein, the disease will begin to attack our

muscles. Maybe others in group are much more aware of this reaction.

The itchiness is definitely a reaction to the atd...but it does go away. It

is NOT an allergy to the meds. As your dosage goes down, the itching will

subside also. The biggest problems/reactions that need to be watched is the

WBC and your liver panel. If they go wacky, then it is probably a good

indicator that can not take THAT atd. To know for sure if it is the atd

that is causing WBC and Liver Function to be on the down hill slide, you

must be tested for both of these tests BEFORE ever taking one pill. I am

appalled when I see doctors of new patients not doing these two tests, and

doing them at 4 week intervals in the beginning with new patients. Graves

can also affect the WBC and LFT's.

>>>Now, he refuses to try me on PTU and scheduled me for an RAI. I

>>>cancelled and have an appointment next month with another endo - one who

>>>sees few patients and does research (got in through a nurse friend of my

>>>wife's).<<<

GOOD for you, finding a new endo! This one sounds like he is a RAI

cheerleader and knows very little about monitoring people while they are on

them. The majority of people who can not take one of the atd's do just fine

on the other one...the good doctors know this. Does this doctor research

for thyroid and graves and hashi's? This is exciting news, and as you make

your journey and build a repore with him, I hope you will pick his brain and

share with us his research! ;-)

I will ask him about antibody tests; and,of course, PTU. I will also ask:

what percentage of people who have RAI do or do not experience problems -

short term and long term? And, if I had a reaction to Methimazole, am I

more prone to an adverse reaction to RAI? Any advice on other questions to

ask?<<<

Here is a good link on thyroid antibodies if you would like to read.

Jeannette <remission now for 3 years last month! after using Tapazole>

shared it with us several months ago and I keep it handy.

http://www.labodia.com//en/thyroid/review_thyroid_english.htm

I have had RAI, in '96 and am now on PTU to lower my antibodies and put my

still active graves in remission. My treatment started out for my eyes...to

lower the TSI ab's that my ophtho had tested and were quite elevated. My

endo then tested all my ab's and several were elevated...so now, my goal,

with her blessing is to be on the ptu as long as it takes to make my ab's no

longer register. Had I done this in the first place, I would never have had

to do the ablative I-131 to my thyroid. And yes, I have had major problems

since RAI...crashing into hypO at 6 weeks post RAI, being kept in hypOhell

for over 4 years and dealing with all of those symptoms, which in my opinion

are so much worse than any of my very hyper days. And I was hyper enough to

have put me in thyroid storm and almost cost my life, and STILL was not

diagnosed!

RAI does NOT address the autoimmune nature of our disease in any way shape

or form. It does not lower our ab's, infact will usually increase them as

they are released into our full system as the thyroid struggles to live

while it is dying from the I-131. I hope you will find a doctor who will

give you the ptu. My endo and ophtho believe it works quicker than the TAP

or MMI on antibodies, but I have no proof of that. It is working on me, of

that I can swear too.

>>>Alternatively, even before my diagnosis was made I went to an

osteopath (for the double vision). She did cranial sacral

manipulation, prescribed more protein based on kineseology, gave me

shoe lifts for my posture, and (here it comes...) gave me bovine (as

in 'cows') eye extract. As I said my double vision cleared up before

the doctors even knew what was going on. (No one can prove whether

her treatments actually helped; according to the doctors, such

symptoms often spontaneously remiss.)<<<

I have never heard of the bovine eye extract. Do you have any more

information? I will be having some cranial sacral done the first week of

August when my sister gets in for a visit, providing her cast comes

off...she broke her arm a week before her trip east was to start ;-)

Something else you may want to add is Omega 3 Fatty Acids. I am just now

getting into this area, but Pam B. is our resident expert on this, and she

is doing a totally alternative approach to treating her graves at the Bastyr

Institute in Seattle.

As for the doctors explanation about your eyes clearing up spontaneously, it

is true, but it usually does so slowly. Isn't it sad that allopathics can

never admit that a natural approach or remedy actually DOES work!

>>>Anyway, I am off the eye extract and continue the cranial sacral. Nowshe

>>>has me taking a homeopathic combination remedy called, Detoxosode;she

>>>told me it would do a cleansing of sorts; the bottle says it isfor

>>>Viruses. I am also taking a Mineral Tranquilizer supplement, mostly

>>>calcium & magnesium - used for hyperkinetic people, insomnia and

>>>irritability. She also has me taking a supplement called

Thytrophin PMG; it is made from bovine thyroid extract (processed to

remove the thyroxine). It is a protomorphogen extract, and supposedly

acts as a decoy for the antibodies to 'attact it' rather than the

Thyroid gland. It's only been 2 weeks and I feel no different. We're

gonna try it for 2 months and do another T3, T4, TSH test. Anyone out

there know anything about this? By the way, these supplements are

available only through health care professionals; I'm not recommending

them; I'm only saying that, if you want to check them out, you'll need

to contact someone who practices alternative 'medicine' and

'prescribes' to this line of thinking.<<<

I know nothing about any of the above, but will look forward to your sharing

more as you progress on this journey.

>>>It's hard to keep up with all the postings and I feel a little guilty

>>>writing such a long one. I'm both hopeful and worried. Thanks for

>>>caring.<<<

Oh please, don't let the amount of mail we receive scare you off! If it is

too much for your inbox, you can always change your settings to receive mail

in digest form <20 or 25 to to a mail> or to read on site <but we have to

put up with lots of adds doing this, but sometimes it is better>.

Don't feel guilty for writing any posts, long, short or in between! *I*

write 'novels' and don't apologize for them ;-) Keep reading, keep asking

questions and keep doing what your doing. You sound like you are well ahead

of the game with the knowledge you already have.

One suggestion, if you don't already do this, get copies of all your labs,

right back from the beginning. We will teach you how to interpret them and

use them to your advantage. And on the day you go for lab draws, make a

note to yourself on how you feel THAT day, when you get your copies of labs,

clip it to it. I keep mine in a 3 ring binder with the newest ones on top.

That is just easier for me. We all do it differently...but copies of your

labs are a must for us.

Take care,

Jody

_________________________________________________________________

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[Guest guest]

Hi Melvin, just wanted to reemphasize 2 points:

*You CAN try PTU and might have great success with it.

*If you have already shown symptoms of TED (thyroid eye disease) then no

responsible endo should be pushing RAI.

Good luck and thanks for sharing your experiences, Fay

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