Re: Back to the Basic Question

[Guest guest]

Dear ,

Point of information: I'm interested in this forum due to the fact that my

girlfriend has Graves' Disease, not me.

She had been in remission (or so she thinks) from '89 until last November '99.

This is the fourth bout with Graves' she's gone through. Previously she was

able to fend it off using PTU, and that's the route she's hoping for this time.

Unfortunately, she had an eye infection (or was that the Graves'?) that prompted

her doc to prescribe some stuff that she had an allergic reaction to. That

reaction, in turn, prompted her endo to worry about how the PTU was affecting

her liver. Subsequent tests revealed a slight reaction to something. Was it

the eye medication (steroids) or was it the PTU? Since PTU is known to cause

liver damage in some cases, her endo wanted to " play it safe " , halt the PTU and

immediately go the RAI route. She resisted, and now liver function tests seem

to have gone back to normal. She's on one 50mg dose of PTU per day, down from

the 150mg she was started on in November) and T3/T4/TSH seem to be approaching

normal.

So, the experience with Graves Disease has been a long road for her -- about 15

years so far. But, she still has not had the RAI and, aside from the current

bout, has been pretty healthy over the past decade.

Doug

###

Notsed8@... wrote:

> doug jones

> i have the same questions.

> nursing yourself back to health via herbs, antithyroid drugs, acupuncture,

> etc.... all seem fine and may actually work for some.... but...

> in my case, at least according to my doctor, remission is out of the

> question. my levels (should probably learn actual numbers) are completely

> too high to hope to recover.

> plus, i have noticed so many talking about remission, yet always seem to get

> elevated levels and graves back after a year. some of those people end up

> going with RAI anyway. by taking RAI now, will we be saving ourselves the

> years of trouble and ill health? i am curious what you think.

> from WA state

> notsed8@... (feel free to write)

>

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[Guest guest]

Dear Le Ann,

RAI is the acronym for RadioActiveIodine, which is taken orally and

gathered up by the thyroid gland, and destroys the thyroid tissues during

it's radioactive life there.

Doug

###

elh wrote:

Dear Doug,

Welcome to the narrow vision of modern medicine. As a nurse I

wore those

blinders for twenty years, but slowly my respect for the medical profession

has slowly and surely been chipped away. I believe I have some

of the best

Drs. in my area, yet they are so convinced that the "reality of the

medical

model" is the only reality, that it makes me wonder if I should entrust

myself to their care at all.

I'm not sure if I'm feeling this way after 3 miscarriages some of which

might have been avoided if they'd have listened to me and checked my

antithyroid antibodies when I asked them to. However, since then

I find

them to be a brick wall when I attempt to work together with them to

solve

the health problems of my family. I'm beginning to think that

they realize

their "limitations" but don't recognize they are part of the problem

with

that limitation, but their dependence on pills and surgery for every

aspect

of medicine. Though I feel like a total novice with herbs, I

feel more

confident in their ability to heal right now, than those brilliant

Dr.'s

pills who's side effects are far worse than any of the herbs I've researched

at this point. However the fact that we can't take immune system

builders

or any herb with iodine does make this whole thing a challenge.

Is RAI radiation or surgery? I"m still mixed up with the abreviations.

Is

it the surgery that can make your eyes get worse, or is that radiation?

I

know many people on thyroid medications who don't feel like they have

a

problem in the world, in fact they never had symptoms before their

Dr. put

them on it. Is it different for us hypers?

I also must admit that I"m wondering if the emphasis on all the things

"we

can do" is not all that different from the Dr.'s obsession to focus

on "all

they can do". Are we in a power battle here? I'm beginning

to wonder if

I'm forgetting the most important one of all- God, the one who is ultimately

in control of all healing. He's allowed us to succumb to this

illness and I

believe He works all things together for the good of those who love

Him and

His son Jesus. (Soap box ended). I'm just realizing how

"out of control"

this disease makes me feel and how little I want to give the control

to

anyone at this time. Is this a symptom of our disease or the

personalities

that got us here in the first place.

Done rambling (Still in my storm, sorry for the wordiness),

Le Ann

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[Guest guest]

doug jones and group

i am not sure which mary you were referring to, but i have a question

regarding PTU.

i started out on 450mg PTU per day. about a month and a half ago, i had a

blood test (no doctor visit) and my doctor had the nurse call me to up my

dosage. i am now taking 600mg per day (4 50 mg, three times per day). does

anyone find this unusual? i have more symptoms the last month than ever with

this disease. i called my doctor and got the nurse, and the nurse gave me

the , " well you know with this disease, extreme exhaustion is a factor " i

wanted to say duh, and that i was calling because my symptoms seem more

debilitating than normal.

anyways, i have heard lots of scary stuff about PTU. i have had a headache

for the last five days that 4 tylenol will not cure. i am dizzy, nautious

sp?, achy, tired, and when i move suddenly the world swims. does anybody

know what this is all about?

i see my doc on feb 15 (the first time in four months). is this safe for her

to leave me unsupervised for so long on so much PTU? i could get liver

damage, too? help! should i demand to see her earlier? i have been so sick

and weak the past week.

mary wa state

[Guest guest]

Wa State,

Call the doctor. You have a right to see her when you don't feel well.

Don't wait. If she is not able to see you or refuses--get another doctor.

Sometimes you have to check out a few docs before you find the right one.

I always go in when I am in doubt. You only have one body.

Take care and be well,

K.

Re: Back to the Basic Question

>doug jones and group

>i am not sure which mary you were referring to, but i have a question

>regarding PTU.

>i started out on 450mg PTU per day. about a month and a half ago, i had a

>blood test (no doctor visit) and my doctor had the nurse call me to up my

>dosage. i am now taking 600mg per day (4 50 mg, three times per day).

does

>anyone find this unusual? i have more symptoms the last month than ever

with

>this disease. i called my doctor and got the nurse, and the nurse gave me

>the , " well you know with this disease, extreme exhaustion is a factor " i

>wanted to say duh, and that i was calling because my symptoms seem more

>debilitating than normal.

>anyways, i have heard lots of scary stuff about PTU. i have had a headache

>for the last five days that 4 tylenol will not cure. i am dizzy, nautious

>sp?, achy, tired, and when i move suddenly the world swims. does anybody

>know what this is all about?

>i see my doc on feb 15 (the first time in four months). is this safe for

her

>to leave me unsupervised for so long on so much PTU? i could get liver

>damage, too? help! should i demand to see her earlier? i have been so

sick

>and weak the past week.

>mary wa state

>

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[Guest guest]

> see my doc on feb 15 (the first time in four months). is this safe for her

> to leave me unsupervised for so long on so much PTU? i could get liver

> damage, too? help!

I agree with K. See the doctor, or find another one. Don't hold off on

questions, and demand answers. Yes, long term use of PTU has been associated

with liver damage as well as bone marrow loss in some people - don't have any

stats, though.

Me.

[Guest guest]

in WA State,

When I first started taking PTU I was getting blood tests every week for a month

and then every two weeks so the doctor could monitor my progress. She tested my

TSH, my white blood cell count and my liver. She told me to watch the white in

my eye and my skin because if it turned yellow there was a possibility of

jaundice and that I would have to stop PTU immediately. She also had me take my

pulse and temperature everyday for the first month on PTU. She said if my pulse

was over 90 or my temperature was slightly elevated for a couple of days to call

immediately. I don't understand how your doctor can prescribe you medication

and not monitor you for four months. I think you need to see your doctor as

soon as possible or find yourself another one.

Karin

> Re: Back to the Basic Question

>

> doug jones and group

> i am not sure which mary you were referring to, but i have a question

> regarding PTU.

> i started out on 450mg PTU per day. about a month and a half ago, i had a

> blood test (no doctor visit) and my doctor had the nurse call me to up my

> dosage. i am now taking 600mg per day (4 50 mg, three times per day). does

> anyone find this unusual? i have more symptoms the last month than ever with

> this disease. i called my doctor and got the nurse, and the nurse gave me

> the , " well you know with this disease, extreme exhaustion is a factor " i

> wanted to say duh, and that i was calling because my symptoms seem more

> debilitating than normal.

> anyways, i have heard lots of scary stuff about PTU. i have had a headache

> for the last five days that 4 tylenol will not cure. i am dizzy, nautious

> sp?, achy, tired, and when i move suddenly the world swims. does anybody

> know what this is all about?

> i see my doc on feb 15 (the first time in four months). is this safe for her

> to leave me unsupervised for so long on so much PTU? i could get liver

> damage, too? help! should i demand to see her earlier? i have been so sick

> and weak the past week.

> mary wa state

>

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> Intro or 9.9% Fixed APR, online balance transfers, Rewards Points,

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[Guest guest]

Karin

oh my * & !@% & *( & $. so it's not just me? sometimes i feel like a

hypochondriac. but everytime i think something is wrong, it usually is. i

cannot believe your doc was so attentive!!! i wish i lived where you are so

i could go to the same doc. anyways, i will call my doctor today and will

not calling until she at least talks to me. this headache is scary. i feel

so dizzy, almost concussed. i am going to demand that she test my white

blood cells too. as far as i know she only tests my thyroid. thankyou for

that response.

mary wa

[Guest guest]

According to Dr. Arem Ridha author of The Thyroid Solution, bone marrow loss

is rare. He did not sight any stats.

K.

Re: Back to the Basic Question

>> see my doc on feb 15 (the first time in four months). is this safe for

her

>> to leave me unsupervised for so long on so much PTU? i could get liver

>> damage, too? help!

>

>I agree with K. See the doctor, or find another one. Don't hold off

on

>questions, and demand answers. Yes, long term use of PTU has been

associated

>with liver damage as well as bone marrow loss in some people - don't have

any

>stats, though.

>

>Me.

>

>

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[Guest guest]

Dear ,

My girlfriend is now on 50mg daily, compared with 150 when she started.

Comparitively, your 600 is certainly significantly higer.

I think you're making a big mistake if you wait till Feb. 15th to see

your doc. If you can't get an emergency appt before that, find a new

doctor.

If all's going well, I guess 4 months between visits is OK, but

considering you're having so many unpleasant things going on with your

body, it's seems way too long.

Impact on your liver is certainly possible, but so is the fact that you

could be having some other thyroid-related, or even unrelated problems.

I think you should go see your doctor tomorrow.

Doug

###

notsed-@... wrote:

original article:hyperthyroidism/?start=39

75

> doug jones and group

> i am not sure which mary you were referring to, but i have a question

> regarding PTU.

> i started out on 450mg PTU per day. about a month and a half ago, i

had a

> blood test (no doctor visit) and my doctor had the nurse call me to

up my

> dosage. i am now taking 600mg per day (4 50 mg, three times per

day). does

> anyone find this unusual? i have more symptoms the last month than

ever with

> this disease. i called my doctor and got the nurse, and the nurse

gave me

> the , " well you know with this disease, extreme exhaustion is a

factor " i

> wanted to say duh, and that i was calling because my symptoms seem

more

> debilitating than normal.

> anyways, i have heard lots of scary stuff about PTU. i have had a

headache

> for the last five days that 4 tylenol will not cure. i am dizzy,

nautious

> sp?, achy, tired, and when i move suddenly the world swims. does

anybody

> know what this is all about?

> i see my doc on feb 15 (the first time in four months). is this safe

for her

> to leave me unsupervised for so long on so much PTU? i could get

liver

> damage, too? help! should i demand to see her earlier? i have been

so sick

> and weak the past week.

> mary wa state

[Guest guest]

doug

hmmmm... yeah so i called my doc yesterday. she's on vacation, with nobody

on call. the receptionist (yes the nurse had the day off as well) told me to

go see my primary care doc. he doesn't know his ass from page 8 i tell her

and she said that that was my only option. so i call my reg doc, explain to

the nurse all of my symptoms, wondering if its the ptu etc.... she says

she'll call me back. then the receptionist from the endo calls and tells me

to go get my blood tested and then i can go over the results with my primary

doc. gasp. i ask her, looking at the lab sheet, if all i am being tested

for is thyroid levels. she tells me yes. so, i look at all of my past lab

sheets, and all of them look the same. why, on ptu, wouldn't they test my

white blood cell count, at least occaisionally? anyways, and hour later, the

nurse calls back. her response includes, uh, the doc doesn't think its the

meds, but he is not sure. uh, we could give you something for your headache

and if you feel like it you can come in. at this point my heart is freaking

out and i am having anxiety like you wouldn't believe. no, i don't want

painkillers (i've tried extra strength tylenol, ibuprofen etc), no i don't

want to see the doc when all he will do is check me over and tell me he

thinks i am ok. i like my doc, but he has screwed up on thyroid stuff plenty

before. like, the year or so i came in with symptoms and he told me i was

outta shape (muscle weakness, rapid heart) or when, after i reminded them to

test me for thyroid (it runs in the family and was on my chart to be tested

every year oops they forgot), i had diarhea and he made me do tests for

giardia etc.... (later my endo tells me it's associated with graves and

because i was freaking out so bad after being diagnosed).... ok so, i feel

alone, like i have to be my own doctor. so- next week my endo comes back

from vacation, and she WILL see me(even though the receptionist said to wait

until my appt.). i will also be calling the one other endo in town and

seeing if he's much better. what should i look out for over the weekend?

here's one more quick outline of my symptoms (they aren't getting worse, just

staying the same): headache (nothing gets rid of it), slight sore throat,

mild fever here and there, increased muscle soreness, weakness, dizziness,

heart has been calm after intitial weeks of diagnosis but is now freaking out

occaisionally, extreme tiredness (more so than usual). i suppose it could be

a slight flu or cold, is there such a thing? i'd prefer vomiting and runny

nose . i guess just make sure nothing gets worse, and if it does, i will

go to emergency room. ps, did i mention doctors suck?

mary wa

thanks doug for responding

[Guest guest]

Hi all. Replying late to a msg. of 1/24. Everyone says RAI is cheap and

that is one reason American medicine likes it. Here is my experience with

the cost:

I have an HMO. Prescription drug coverage is very low on this

particular plan.

It occurred to me that the radioactive iodine could fall into one of two

categories, or both, these being:

l)A prescription drug that would be covered and paid for under the

HMO's prescription drug coverage. Currently for my plan the cap

is $750.00 per year.

2)Therapy or treatment.

Being on a limited income and concerned about the slight possibility that I

might have to pay for RAI out-of-pocket, I tried to get dollar figures on the

cost of the actual radioactive iodine. The HMO was of no help at all.

So I called the Nuclear Medicine Dept. of the hospital where I already had

the appointment to have the RAI done. Spoke to a Nuclear Medicine Technician.

She advised me that she believed the prescription for 8-9 mcgs. of

radioactive iodine fell under the category of " therapy " and not a

prescription.

BUT . . . she advised me to definitely make sure this was the case because,

if not, I was looking at approximately a $5,000.00 bill!

So, this thought comes to mind -- How come everybody claims this treatment

is inexpensive?

Subsequently, I reconsidered (not because of the cost) and opted for Tapazole

and am currently on that drug & happy with my decision.

Just thought I'd add my two cents, and what I was told. Helen

[Guest guest]

Helen,

>From the onset of my Graves- I read where this was an expensive disease.

True to their word--it is very expensive. With the tests, RAI, TED, and

blood tests. Thank God for insurance.

I am glad to hear you are feeling fine and happy with your decision. We all

must do what we think best.

Good luck to you!

K.

Re: Back to the Basic Question

>Hi all. Replying late to a msg. of 1/24. Everyone says RAI is cheap and

>that is one reason American medicine likes it. Here is my experience with

>the cost:

>

> I have an HMO. Prescription drug coverage is very low on this

>particular plan.

>It occurred to me that the radioactive iodine could fall into one of two

>categories, or both, these being:

>

> l)A prescription drug that would be covered and paid for under the

> HMO's prescription drug coverage. Currently for my plan the cap

> is $750.00 per year.

>

> 2)Therapy or treatment.

>

>Being on a limited income and concerned about the slight possibility that I

>might have to pay for RAI out-of-pocket, I tried to get dollar figures on

the

>cost of the actual radioactive iodine. The HMO was of no help at all.

>

>So I called the Nuclear Medicine Dept. of the hospital where I already had

>the appointment to have the RAI done. Spoke to a Nuclear Medicine

Technician.

>She advised me that she believed the prescription for 8-9 mcgs. of

>radioactive iodine fell under the category of " therapy " and not a

>prescription.

>

>BUT . . . she advised me to definitely make sure this was the case because,

>if not, I was looking at approximately a $5,000.00 bill!

>

> So, this thought comes to mind -- How come everybody claims this treatment

>is inexpensive?

>

>Subsequently, I reconsidered (not because of the cost) and opted for

Tapazole

>and am currently on that drug & happy with my decision.

>

>Just thought I'd add my two cents, and what I was told. Helen

>

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