Re: Graves Disease - ATD - REI - frustration

July 16, 2002

Debbie,

Get on the phone, call around and find a " thyroidologist " . Do not let

yourself be pressured into this if it is something you don't want to do.

This doctor is no good!

Doesn't know anything about treating you with ATD's! That is why it would be

easier for her to treat you hypo with Synthroid after RAI! RUN!!!!!!

Your life, your body, your decision!

God bless!

July 16, 2002

Debbie in TX,

I am soooo Sorry! Your doctor sounds like she is one Selfish person who is

thinking about budget and her own promotion instead of you!!!!

You were absolutely right in asking the questions you did! One of the things

she did to you is threaten you regarding your treatment. Her excuse for

using liver damage as the reason for only giving you 30 days worth of ptu, is

inexcusable and should be reported to the health dept. An answer you can

give to her question is " where is the blood work of the " liver profile " that

shows I am in danger of liver damage " .

Another thing that she did is Lie to you, regarding when you asked about

weight gain and eye problems etc and she said " that you shouldn't have any

problems " . She in no way could know if you are going to have problems with

those things. Well, I will answer your question for you the best I can....

" How many people say out of 10 patients will have problems with those

things? " The medical society will recognize at least a 15% risk factor,

though it is more likely 30 or higher. So you can easily say that at least

one and half people out of ten will come down with Thyroid eye disease! That

the Medical Society WILL recognize! You are not playing with fire! You

just threw water on it!!!

I can also tell you I never had RAI, though it was presented to me in much

the same way it is being presented to you. I would not like to be one who is

standing in a line with 10 other people waiting to see if I am one of the one

and a half people who could get TED because for some reason the ball always

comes to me and I am not willing to take that chance. People can stay on

ATD's for as long as they can tolerate it, and one way to moniter it is by

having Liver Profile blood work checks periodically.

Tell your endo to throw her " old " guideline books away and stop treating her

patients like robots!!! Go find a new endo. You shouldn't have to be going

through this, YOU are the patient and deserve to be medically and emotionally

treated properly!

When I finally did get rid of my old endo, things have been going great. At

first I was leary, because I didn't want to start all over again, but come to

find out, I hadn't even started yet, so I waisted all that time and got

medically worse in the meantime!

Hang in there!!!

lil Deb

July 16, 2002

Run like the wind, Debbie! This woman sounds like she wants everyone to fit

into the same little box so she doesn't have to bother about taking care of

people as individuals. The fact that you're in Texas seems fitting. I'm in

Houston working and have found that few doctors here give a damn. I think I've

been lucky. I went to my first endo appt a few weeks ago and although the

doctor only spent 5 minutes with me, at least she told me that RAI is a bad idea

for me (I have the eye disease as well) and gave me PTU & beta blocker. She

started me on 450 mg a day and have the same symptoms that you have. So, I

think you may have started having hyper symptoms because your PTU dose was too

low. That's just a hunch I have, I'm new to this stuff. Where in Texas are

you? I have an appt with Dr. Ridha Arem Thursday here in Houston. He's

supposed to be one of the best endo/thyroid guys in the country. If you're not

too far away, you may want to consider making an appt with him.

Take care and don't let that awful woman bully you into RAI or anything else you

don't want to do.

Tori

In a message dated Tue, 16 Jul 2002 4:44:30 PM Eastern Standard Time,

CATFISHJO4@... writes:

>

> Ok, after seeing my endo today, and unfortunately having just short

> of an argument with her over REI, I am in a tizzy!

> Here goes-I was diagnosed with Graves almost 3years ago and started

> on PTU only (this was thru my family dr). She gradualy increased my

> dosage until I was on 300 daily and about a year and a half ago she

> added Beta-blocker 25 mg daily. I was doing fine.

> This past spring I started feeling tired more often, starting to

> prefer office area warmer (co-employes used to call my area the Meat

> Locker)my fingers were swelling around my rings on occasions, and my

> lower legs were sometimes itchy. The area where I would scratch at

> my legs would turn red within a few hours of scratching and would

> remain that way for about a week.

> With these symptons in mind I saw my dr. and she did blook work.

> She also advised my at that appt. that she had been at a " seminar "

> recently concerning ATD's/thryroid problems and had learned that I

> had been on PTU for probably as long as possible and was lucky not to

> have had any side effects. She told me that " staying on PTU would

> seriously increase my chances of liver failure " and advises me to

> consider REI and to see a specialist/endo.

> When she got my blood work back the nurse called to tell me that I

> was now hypo and to start decreasing my PTU to 400 mg daily. I did

> decrease my PTU and made an appt. with an endo.

> The 1st time I met the endo and had taken a copy of the lab results

> from the dr for her to read, she immediately said that I was not hypo

> and that my dr. had misinterperted my lab results. She said that I

> was still quite hyper and suggested REI. I told her that I was

> really against that. When she questioned why I told her my dr. had

> told me that afterwards you can feel pretty poorly and it takes quite

> a while to get re-regulated. She said she didn't know why my dr.

> would tell me a thing like that but that that was not so. She said

> she does them all the time and the people she has done it with have

> done just fine with it.

> I tentatively agreed to go thru with the REI later in the summer.

> She did another lab test and it came back with my Free Tr at 0.89 and

> my T3 at 5.0 and the Ultrasensitive TSH at 0.006. When she got this

> back she said I had to up the 400 mg of PTU to 500 or go off

> altogether and dothe REI. I kinda freaked and went ahead and

> scheduled the REI for the end of July. At that time she told me to

> stop taking the PTU altogether and upped my beta blocker to 50 mg

> daily. And she also wanted to do a Thyroid Scan (already did that on

> July 2nd) Thyroid Scan came back at 76% hyper.

> Since then I had done research that I had not done prior to now.

> I had seen allthis negative info on REI and decided forget this.

> Although I am starting to get quite hyper again now that I am not

> taking anything.

> I called yesterday to tell her I wanted to cancel my REI and stay on

> ATD's and she made an appt. for me to come in today.

> It did not go well,,,,,,,She tells me that only the people who have

> had a bad experience with it have gotten on the net to talk about it

> and that there are many,many more success storiesthan horror ones.

> The people who are doing well with REI just don't write about it.

> She said she will not write me another script for PTU as I am " in

> danger of liver damage " . When I asked if she would put me on a

> different med. she said no that it would be just the same problems

> with any other drug. ???? She told me she was " getting irratated

> with me " I said I was having a bad day also. When I asked about bad

> side effects fromthe REI such as eye problems, weight gain, and

> problems about getting the dosage right for hypo. She said that I

> should not have any of those problems. When I asked for example how

> many out of say 10 patients experienced side effects from REI she

> wouldn't really answer me but got defensive and told me I was playing

> with fire. My pulse todaywas 126 so she used that to tell me I was a

> walking heart attack if I didn't address this problem with REI.

> Bottom line with her is she will give me a 30 day script for PTU and

> she increased my beta blocker to 100 daily and I can find another dr.

> or I can take the REI and stay with her.

> Of course my pulse now is only 100 (I know still high). I went there

> pretty much knowing we would not agree so I think that was reason for

> higher pulse.

> Now I am freaking, I know I can't go on this way. Is there a point

> when REI is necessary?? I'm not sure what to do?? Find yet another

> dr. and pay more co-pays to hear the same thing?? I'm venting and

> need to hear from some others who have perhaps been here

> and

> done,,,,,,,,what??

> Debbie in Texas

July 16, 2002

Debbie,

First of all I am sorry that you had a bad experience with your doc today. The

NERVE of her. She obviously does not have a clue what she is talking about and

most certainly does not have you, the patient she is supposed to care for, in

mind when she says such hogwash and treats you the way she did.

I cannot say that I have been in your shoes regarding whether or not there is a

point when RAI becomes " necessary " as for me, it never will because I would have

surgery before even considering the RAI. I am sure that those of us here who

have had the RAI will chime in and let you know their thoughts on this point.

One thing that didn't jive in your email was: " ...until I was on 300 daily and

about a year and a half ago... " and " ...the nurse called to tell me that I

was now hypo and to start decreasing my PTU to 400 mg daily... " Is it me or is

the 300 mg to 400 mg an INCREASE in dosage? I just wanted to clear that up.

Hopefully it was a typo and not an error on the docs part. If it was the doc,

then she needs to stop practicing medicine as she cannot even get her addition

and subtraction correct.

I can tell you that I too am hypo, which it sounds to me like you are since I've

had the same symptoms, and have been over-medicated and that is what induced the

hypo for me. I am currently on BRT and will see how that goes after 6 weeks

when I have labs come August 1.

My advice for you is to get a new doc. I know it is not what you probably want

to hear this far into your Graves journey, but you surely do not want to

continue to have someone bad mouth you who isn't interested in your health.

Good Luck!!

in land

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

July 16, 2002

catfishjo4 wrote:

>

> She gradualy increased my

> dosage until I was on 300 daily and about a year and a half ago she

> added Beta-blocker 25 mg daily.

We have already had a similar thread, this is almost certainly

too much PTU for the vast majority of patients. It is more usual

to start high and drop the dose.

> This past spring I started feeling tired more often, starting to

> prefer office area warmer (co-employes used to call my area the Meat

> Locker)my fingers were swelling around my rings on occasions, and my

> lower legs were sometimes itchy. The area where I would scratch at

> my legs would turn red within a few hours of scratching and would

> remain that way for about a week.

They are hypo symptoms, to be expected on such a dose of PTU for

so long.

> With these symptons in mind I saw my dr. and she did blook work.

> She also advised my at that appt. that she had been at a " seminar "

> recently concerning ATD's/thryroid problems and had learned that I

> had been on PTU for probably as long as possible and was lucky not to

> have had any side effects. She told me that " staying on PTU would

> seriously increase my chances of liver failure " and advises me to

> consider REI and to see a specialist/endo.

Well seeing a specialist sounds better than seeing a doctor who

prescribes drugs without knowing about their side effects.

> When she got my blood work back the nurse called to tell me that I

> was now hypo and to start decreasing my PTU to 400 mg daily. I did

> decrease my PTU and made an appt. with an endo.

Hold up you were on 300 daily a moment ago, and now it is

400....

Anyway you had hypo symptoms and the nurse called it as such....

interesting.

> I tentatively agreed to go thru with the REI later in the summer.

> She did another lab test and it came back with my Free Tr at 0.89 and

> my T3 at 5.0 and the Ultrasensitive TSH at 0.006.

We need units for the Free Tr and T3 (is that total T3 or free

T3?)

TSH is pretty meaningless at this point.

> When I asked for example how

> many out of say 10 patients experienced side effects from REI she

> wouldn't really answer me but got defensive and told me I was playing

> with fire.

Dump any medic who doesn't give you a straight answer on those

kind of questions.

Even at Papworth where they do complex transplant surgery as a

regular part of their work, they are always upfront and honest

with the statistics. Even when the statistics are BAD, and this

is the kind of medicine where statistics say things like you

have a 90% chance of surviving the surgery, let alone your odds

for making 2 years or 5 years.

All treatments carry risks, even no treatment carries a risk, if

the doctors don't attempt to quantify them how do we know what

they are doing isn't guess work.

July 16, 2002

Hi Debbie in Tx.

In the files section of our groups homepage there is a Contract for A Pushy

Doctor. Go read it, then print it up and get her to sign it. She won't,

she can't, she can not promise that those things will not happen.

Everyone is right...get a new doctor, and quickly. If your close to Dr.

Arem, see him, tell him you have no treatment going right now and need to be

seen ASAP. He got Tori in very quickly, in my opinion.

Take care,

Jody

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July 16, 2002

hi debbie in texas,

i don't often post here, not that i don't like this

group, it's just that i was sOooo bz with my school (I

am graduating in 2 wks from NURSING.) This group has

helped me tremendously in dealing w/d my new disease,

hypoT. Thanks jody, thanks ALL!!....

Your story caught my eye which made me set aside my

homework i have to finish today. (have to do a

presentation in class tomorrow). Please don't let

these doctors convince you to go for RAI(Research more

before you go for that permanent fix)....I am now

suffering because i listened to these conventional

doctors who give this standard treatment(RAI) to all

their patients w/ GRAVES. After that treatment, they

will be so happy(of course it's a steady income for

them+more commissions from the drug companies) because

you will be seeing them more often.....In my clinical

@ the convalescent home, there was this one doctor who

was telling the nurses that he should be given an

award for bringing a lot of patients to their

facility,...so his purpose was not to make his

patients well but to make them get sicker so this

facility will get more money..

Last year, these five doctors including my cousin

doctor said If i wouldn't do RAI, I would be dead

soon. My pulse rate then was (126), Now that Im hypo,

my cousin doctor was surprised that i am still not

feeling well. he said I was one in a million because

most of his patients who had RAI got no complain and

living normally. HIs patients probably don't know

where they 'r heading to after RAI....

I had one patient who had a thyroidectomy when she was

18yo and doctor never prescribed her T4. Now that she

is 44yo, she is very obese (300 lbs), with diabetes,

hypertension, and had acute renal failure...her sister

told the nurses that she is a mental case and hard to

deal with...These nurses didn't believe me when i said

it was her TD that was making her act that way. She

could be very very sweet and the next day, she would

be screaming at the top of her head, yelling at those

nurses.. This patient cried to me telling me that she

didn't know what really was wrong with her. Her voice

wAS slow and deep. I told her that she should have her

thyroid check and lab results revealed that she was

hypo (tsh=6). So I figured maybe my cousin's patients

never complained because they didn't know that killing

their thyroid could lead to other serious diseases

later in life. Your body after RAI is going to be out

of balance. My doctor quack was tellin me that all my

complaints of muscle aches, memory loss, weight gain

were not thyroid related, he suspected that I might be

having some other kind of disease.. w/c until now

still couldn't figure out what it is....these

conventional doctors are trying to put on their

patients' heads that when patients complain after RAI,

it's not thyroid related..dUHHh!! Your thyroid is

very important organ in your body, w/o it, your whole

body systems would all be messed up so why kill it

with RAI?

Jody, I am curious about the energy work you are doin

for your thyroid to work again, Can you share it with

me?...I WANT MY THYROID BACK...URGH! ..........my

finals is coming up and I need energy for my brain to

function.

chie

--- catfishjo4 wrote:

> Ok, after seeing my endo today, and unfortunately

> having just short

> of an argument with her over REI, I am in a tizzy!

> Here goes-I was diagnosed with Graves almost 3years

> ago and started

> on PTU only (this was thru my family dr). She

> gradualy increased my

> dosage until I was on 300 daily and about a year and

> a half ago she

> added Beta-blocker 25 mg daily. I was doing fine.

> This past spring I started feeling tired more often,

> starting to

> prefer office area warmer (co-employes used to call

> my area the Meat

> Locker)my fingers were swelling around my rings on

> occasions, and my

> lower legs were sometimes itchy. The area where I

> would scratch at

> my legs would turn red within a few hours of

> scratching and would

> remain that way for about a week.

> With these symptons in mind I saw my dr. and she did

> blook work.

> She also advised my at that appt. that she had been

> at a " seminar "

> recently concerning ATD's/thryroid problems and had

> learned that I

> had been on PTU for probably as long as possible and

> was lucky not to

> have had any side effects. She told me that

> " staying on PTU would

> seriously increase my chances of liver failure " and

> advises me to

> consider REI and to see a specialist/endo.

> When she got my blood work back the nurse called to

> tell me that I

> was now hypo and to start decreasing my PTU to 400

> mg daily. I did

> decrease my PTU and made an appt. with an endo.

> The 1st time I met the endo and had taken a copy of

> the lab results

> from the dr for her to read, she immediately said

> that I was not hypo

> and that my dr. had misinterperted my lab results.

> She said that I

> was still quite hyper and suggested REI. I told her

> that I was

> really against that. When she questioned why I told

> her my dr. had

> told me that afterwards you can feel pretty poorly

> and it takes quite

> a while to get re-regulated. She said she didn't

> know why my dr.

> would tell me a thing like that but that that was

> not so. She said

> she does them all the time and the people she has

> done it with have

> done just fine with it.

> I tentatively agreed to go thru with the REI later

> in the summer.

> She did another lab test and it came back with my

> Free Tr at 0.89 and

> my T3 at 5.0 and the Ultrasensitive TSH at 0.006.

> When she got this

> back she said I had to up the 400 mg of PTU to 500

> or go off

> altogether and dothe REI. I kinda freaked and went

> ahead and

> scheduled the REI for the end of July. At that time

> she told me to

> stop taking the PTU altogether and upped my beta

> blocker to 50 mg

> daily. And she also wanted to do a Thyroid Scan

> (already did that on

> July 2nd) Thyroid Scan came back at 76% hyper.

> Since then I had done research that I had not done

> prior to now.

> I had seen allthis negative info on REI and decided

> forget this.

> Although I am starting to get quite hyper again now

> that I am not

> taking anything.

> I called yesterday to tell her I wanted to cancel my

> REI and stay on

> ATD's and she made an appt. for me to come in today.

> It did not go well,,,,,,,She tells me that only the

> people who have

> had a bad experience with it have gotten on the net

> to talk about it

> and that there are many,many more success

> storiesthan horror ones.

> The people who are doing well with REI just don't

> write about it.

> She said she will not write me another script for

> PTU as I am " in

> danger of liver damage " . When I asked if she would

> put me on a

> different med. she said no that it would be just the

> same problems

> with any other drug. ???? She told me she was

> " getting irratated

> with me " I said I was having a bad day also. When I

> asked about bad

> side effects fromthe REI such as eye problems,

> weight gain, and

> problems about getting the dosage right for hypo.

> She said that I

> should not have any of those problems. When I asked

> for example how

> many out of say 10 patients experienced side effects

> from REI she

> wouldn't really answer me but got defensive and told

> me I was playing

> with fire. My pulse todaywas 126 so she used that

> to tell me I was a

> walking heart attack if I didn't address this

> problem with REI.

> Bottom line with her is she will give me a 30 day

> script for PTU and

> she increased my beta blocker to 100 daily and I can

> find another dr.

> or I can take the REI and stay with her.

> Of course my pulse now is only 100 (I know still

> high). I went there

> pretty much knowing we would not agree so I think

> that was reason for

> higher pulse.

> Now I am freaking, I know I can't go on this way.

> Is there a point

> when REI is necessary?? I'm not sure what to do??

> Find yet another

> dr. and pay more co-pays to hear the same thing??

> I'm venting and

> need to hear from some others who have perhaps been

> here and

> done,,,,,,,,what??

> Debbie in Texas

>

__________________________________________________

July 16, 2002

You're right, Jody. I only had to wait a few weeks to see Dr. Arem. I told the

receptionist that I was not on any medication and my GP wanted me to see an endo

ASAP. She got me in as soon as she could without even pausing. Debbie, if you

decide to see him, be prepared to pay out of pocket. He's not set up with any

insurance co, so you'll have to see if they'll reimburse you for the visit. I'm

sure he's well worth it even if your insurance doesn't reimburse you.

Take care,

Tori

In a message dated Tue, 16 Jul 2002 10:02:59 PM Eastern Standard Time,

luckystrike@... writes:

> If your close to Dr.

> Arem, see him, tell him you have no treatment going right

> now and need to be

> seen ASAP. He got Tori in very quickly, in my opinion.

July 16, 2002

I have had a dr say that to me too!It makes me so mad!Is there any

good 'come-backs' to say the next time I get told that? Thanks.

Lori

>She tells me that only the people who have

> had a bad experience with it have gotten on the net to talk about

it

> and that there are many,many more success storiesthan horror ones.

> The people who are doing well with REI just don't write about it.

July 17, 2002

I have been very interested in this thread since

I am about to be diagnosed.

I have to ask: What is the percentage of people

on ATDs who do get liver damage and is it

reversible? Is the damage life threatening? How

many MORE people die from liver problems on ATDs

compared to the general population?

I am sure I am about to fight the same battle you

people are, I want to be ready.

Also, I think I need to go ahead and get my eye

problems diagnosed by an opthamologist before I

discuss Graves treatment. Does anyone have any

idea how I can find a good one who knows graves

disease?

Thanks in advance,

Kit

--- jacksue7@... wrote:

> Debbie in TX,

>

> I am soooo Sorry! Your doctor sounds like she

> is one Selfish person who is

> thinking about budget and her own promotion

> instead of you!!!!

>

> You were absolutely right in asking the

> questions you did! One of the things

> she did to you is threaten you regarding your

> treatment. Her excuse for

> using liver damage as the reason for only

> giving you 30 days worth of ptu, is

> inexcusable and should be reported to the

> health dept. An answer you can

> give to her question is " where is the blood

> work of the " liver profile " that

> shows I am in danger of liver damage " .

>

> Another thing that she did is Lie to you,

> regarding when you asked about

> weight gain and eye problems etc and she said

> " that you shouldn't have any

> problems " . She in no way could know if you are

> going to have problems with

> those things. Well, I will answer your

> question for you the best I can....

> " How many people say out of 10 patients will

> have problems with those

> things? " The medical society will recognize

> at least a 15% risk factor,

> though it is more likely 30 or higher. So you

> can easily say that at least

> one and half people out of ten will come down

> with Thyroid eye disease! That

> the Medical Society WILL recognize! You are

> not playing with fire! You

> just threw water on it!!!

>

> I can also tell you I never had RAI, though it

> was presented to me in much

> the same way it is being presented to you. I

> would not like to be one who is

> standing in a line with 10 other people waiting

> to see if I am one of the one

> and a half people who could get TED because for

> some reason the ball always

> comes to me and I am not willing to take that

> chance. People can stay on

> ATD's for as long as they can tolerate it, and

> one way to moniter it is by

> having Liver Profile blood work checks

> periodically.

>

> Tell your endo to throw her " old " guideline

> books away and stop treating her

> patients like robots!!! Go find a new endo.

> You shouldn't have to be going

> through this, YOU are the patient and deserve

> to be medically and emotionally

> treated properly!

>

> When I finally did get rid of my old endo,

> things have been going great. At

> first I was leary, because I didn't want to

> start all over again, but come to

> find out, I hadn't even started yet, so I

> waisted all that time and got

> medically worse in the meantime!

>

> Hang in there!!!

>

> lil Deb

>

> [Non-text portions of this message have been

> removed]

>

__________________________________________________

July 17, 2002

I enjoyed reading the letter for the pushy

doctor, but using something like this as a weapon

may make the doctor afraid of you are a litigious

person (one looking to win a lawsuit). Sometimes

they wills spread the word in their specialty if

they find a patient is legally challenging them,

and that can make it difficult to be treated by

anyone.

My ex is a lawyer, so I tend to be the devil's

advocate.

Kit

--- Jody Spitale wrote:

> Hi Debbie in Tx.

> In the files section of our groups homepage

> there is a Contract for A Pushy

> Doctor. Go read it, then print it up and get

> her to sign it. She won't,

> she can't, she can not promise that those

> things will not happen.

>

> Everyone is right...get a new doctor, and

> quickly. If your close to Dr.

> Arem, see him, tell him you have no treatment

> going right now and need to be

> seen ASAP. He got Tori in very quickly, in my

> opinion.

> Take care,

> Jody

>

_________________________________________________________________

> MSN Photos is the easiest way to share and

> print your photos:

> http://photos.msn.com/support/worldwide.aspx

>

__________________________________________________

July 17, 2002

I wouldn't talk about net support groups, it will

make you seem like you follow knee jerk

responses. Some doctors I am dealing with aren't

even on-line, so when ai had to tell my kids doc

which panel they would need for celiac tests, I

told his where on line he could get that info, he

looked at me like I was nuts and asked if I had

diagnosed myself " online. " Some people think

computers are demonic tools, I think. I had to

laugh.

I would refer to published medical studies,

books on the topic, and ask for firm statistics.

Kit

--- eljla wrote:

> I have had a dr say that to me too!It makes me

> so mad!Is there any

> good 'come-backs' to say the next time I get

> told that? Thanks.

>

> Lori

>

> >She tells me that only the people who have

> > had a bad experience with it have gotten on

> the net to talk about

> it

> > and that there are many,many more success

> storiesthan horror ones.

> > The people who are doing well with REI just

> don't write about it.

>

__________________________________________________

July 17, 2002

Yes, my experience with mentioning to MDs information I learned online has

been the same. What really really worked though, was taking Elaine 's

Graves' Disease book with me. *That* got results, without the scorn.

Pam B.

Re: Re: Graves Disease - ATD - REI -

frustration

I wouldn't talk about net support groups, it will

make you seem like you follow knee jerk

responses. Some doctors I am dealing with aren't

even on-line, so when ai had to tell my kids doc

which panel they would need for celiac tests, I

told his where on line he could get that info, he

looked at me like I was nuts and asked if I had

diagnosed myself " online. " Some people think

computers are demonic tools, I think. I had to

laugh.

I would refer to published medical studies,

books on the topic, and ask for firm statistics.

Kit

July 17, 2002

Kit Kellison wrote:

>

> I have been very interested in this thread since

> I am about to be diagnosed.

> I have to ask: What is the percentage of people

> on ATDs who do get liver damage and is it

> reversible? Is the damage life threatening? How

> many MORE people die from liver problems on ATDs

> compared to the general population?

I've never seen any convincing statistics. I have seen reference

to liver transplants caused by PTU. There was a recent article

in one the the " Liver " Journals asking what have we learnt about

treatment using antithyroid drugs. It wasn't anti-ATD, just

trying to quanitify risk so people can make a reasoned

assessment. I don't have the reference to hand though -

sorry....

In cats on ATDs liver side effects occur in about 20%, but it is

hard to compare, they are cats, they tend to get much larger

doses (5 mg to 20mg Methimazole daily is typical, but cats are

about a tenth the size of humans, indeed I dare say my friends

cat, which was the runt, is probably about the same size as my

liver), and hyperthyroidism tends to occur in cats during their

" old age " .

There is a continuum of liver problems, almost all potent

medications cause the liver to work harder and this shows up in

blood tests (Alkaline Phosphatase - I think but I'm a little

rusty). Typically this rises when the liver has work to do, but

you only worry when it sky rockets.

Hyperthyroidism can induce hepatitis like symptoms, as thyroid

hormones affect the liver a bit like alcohol!

I believe some people have an alledged acute reaction to PTU

that can damage the liver, very quickly, and is dose independent

(i.e. any amount of PTU triggers the reaction), but we are

talking around the 1 in 100,000 mark. The article below reviewed

the literature and found 25 recorded cases in English language

medical journals.

Severe liver problems as a reaction to PTU are exceedingly

rare....

http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve & db=PubMed & list_uid\

s=9773944 & dopt=Abstract

Grave's disease patients start of with naff livers....

http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve & db=PubMed & list_uid\

s=11141587 & dopt=Abstract

And even the world's best liver people don't realise what

Grave's can do to the liver....(okay with a transplant thrown in

to confuse them).

http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve & db=PubMed & list_uid\

s=11041462 & dopt=Abstract

There are other stories in the literature of cases of hepatitis

mysteriously getting better when Grave's disease was treated...

so the above isn't unique, just transplant patients tend to get

the best doctors.... It is exciting medicine, just the kind

doctors like and patients try and avoid!

So what ever you do, if the doctor is going to panic at an

abnormal liver test, make sure they do some before hand to get a

baseline.

My doctor took the view that if I hadn't turned yellow, and

didn't have a fever my liver was probably working reasonably

okay. I think he might be a tad cavalier given I was complaining

of pain in my side and inability to drink alcohol, but you can

worry too much about side effects, and miss the bigger picture.

Hyperthyroidism kills - it kills a significant proportion of

those that have it. Any extra deaths due to liver problems from

ATD are likely to be insignificant compared to the number dying

from heart attacks in studied of Grave's disease.

Get euthyroid quick, stay euthyroid, life will be better and

longer!

July 17, 2002

Thank you Simon, for your timely reply.

I have been so sick for so long, I really am

thinking that ATD's might take too long, I have

had until recently undiagnosed Celiac Disease for

my entire life (I am 42), and would really like

to go back to school and get a job again.

It probably is true that most people happily on

synthroid after RAI or thyroidectomy have much

less reason to post on web-sites. I want to seem

like a reasonable person when I first see my

endo, so as not to get off on the wrong foot, but

being a pushover is not in my make-up.

Kit

--- Simon Waters

wrote:

> Kit Kellison wrote:

> >

> > I have been very interested in this thread

> since

> > I am about to be diagnosed.

> > I have to ask: What is the percentage of

> people

> > on ATDs who do get liver damage and is it

> > reversible? Is the damage life threatening?

> How

> > many MORE people die from liver problems on

> ATDs

> > compared to the general population?

>

> I've never seen any convincing statistics. I

> have seen reference

> to liver transplants caused by PTU. There was a

> recent article

> in one the the " Liver " Journals asking what

> have we learnt about

> treatment using antithyroid drugs. It wasn't

> anti-ATD, just

> trying to quanitify risk so people can make a

> reasoned

> assessment. I don't have the reference to hand

> though -

> sorry....

>

> In cats on ATDs liver side effects occur in

> about 20%, but it is

> hard to compare, they are cats, they tend to

> get much larger

> doses (5 mg to 20mg Methimazole daily is

> typical, but cats are

> about a tenth the size of humans, indeed I dare

> say my friends

> cat, which was the runt, is probably about the

> same size as my

> liver), and hyperthyroidism tends to occur in

> cats during their

> " old age " .

>

> There is a continuum of liver problems, almost

> all potent

> medications cause the liver to work harder and

> this shows up in

> blood tests (Alkaline Phosphatase - I think but

> I'm a little

> rusty). Typically this rises when the liver has

> work to do, but

> you only worry when it sky rockets.

>

> Hyperthyroidism can induce hepatitis like

> symptoms, as thyroid

> hormones affect the liver a bit like alcohol!

>

> I believe some people have an alledged acute

> reaction to PTU

> that can damage the liver, very quickly, and is

> dose independent

> (i.e. any amount of PTU triggers the reaction),

> but we are

> talking around the 1 in 100,000 mark. The

> article below reviewed

> the literature and found 25 recorded cases in

> English language

> medical journals.

>

> Severe liver problems as a reaction to PTU are

> exceedingly

> rare....

>

http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve & db=PubMed & list_uid\

s=9773944 & dopt=Abstract

>

> Grave's disease patients start of with naff

> livers....

>

http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve & db=PubMed & list_uid\

s=11141587 & dopt=Abstract

>

> And even the world's best liver people don't

> realise what

> Grave's can do to the liver....(okay with a

> transplant thrown in

> to confuse them).

>

http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve & db=PubMed & list_uid\

s=11041462 & dopt=Abstract

>

> There are other stories in the literature of

> cases of hepatitis

> mysteriously getting better when Grave's

> disease was treated...

> so the above isn't unique, just transplant

> patients tend to get

> the best doctors.... It is exciting medicine,

> just the kind

> doctors like and patients try and avoid!

>

> So what ever you do, if the doctor is going to

> panic at an

> abnormal liver test, make sure they do some

> before hand to get a

> baseline.

>

> My doctor took the view that if I hadn't turned

> yellow, and

> didn't have a fever my liver was probably

> working reasonably

> okay. I think he might be a tad cavalier given

> I was complaining

> of pain in my side and inability to drink

> alcohol, but you can

> worry too much about side effects, and miss the

> bigger picture.

> Hyperthyroidism kills - it kills a significant

> proportion of

> those that have it. Any extra deaths due to

> liver problems from

> ATD are likely to be insignificant compared to

> the number dying

> from heart attacks in studied of Grave's

> disease.

>

> Get euthyroid quick, stay euthyroid, life will

> be better and

> longer!

>

__________________________________________________

July 17, 2002

Kit Kellison wrote:

>

> Thank you Simon, for your timely reply.

> I have been so sick for so long, I really am

> thinking that ATD's might take too long

I'm losing track - too many new people - didn't you post your

numbers without units?

I should probably go read the archive....

> It probably is true that most people happily on

> synthroid after RAI or thyroidectomy have much

> less reason to post on web-sites.

Or they are all too lethargic to bother.

The people closest to me who did RAI aren't miraculously better,

but they aren't obviously worse than they were doing on ATD.

Neither have ever posted to mailing lists of Internet newsgroups

in their lives. Neither had eye involvement before or after.

Personally I'm on the second round of ATD (having had surgery in

between) and whilst I was fine for a few years after surgery, my

current condition is worse than pre-surgery ATD drug treatment.

Whether you can blame the surgery is a moot point, I'm not a

clinically controlled trial.

Given the risks involved I haven't seen anything to make me say

- yes give me RAI.

That said if the drugs (when prescribed correctly) hadn't made

me euthyroid I would happily do whatever it takes.... prefering

surgery to RAI, but whatever it takes. RAI can take 3 or 4

months to take proper effect, so it isn't a quick fix. Surgery

is the " quickest fix " , but I'm living proof it isn't the perfect

treatment, still I think I'd prefer surgery to RAI.

> I want to seem

> like a reasonable person when I first see my

> endo, so as not to get off on the wrong foot, but

> being a pushover is not in my make-up.

If it was a clear cut RAI is the best treatment, they wouldn't

offer people the choice of surgery, drugs or RAI. Typically the

patient is given this choice in the UK, although often without

the figures and advice necessary to make an informed decision.

In the US you seem mostly to be pushed to RAI... No one has ever

adequately explained why the difference. I can't even believe it

is cost as Methimazole based drugs are so cheap, unless it is

all those blood tests they can skip if they make you

hypothyroid.

Celiac's - interesting - the jury is still out as to whether it

is a related disease, or whether people who gets Grave's are

just more like to get Celiac's (specific HLA and tissue types

are more prevelant in sufferer of these disease). Anyway giving

up gluten completely has been known to " cure " Grave's disease in

some Celiac patients - so follow that diet religiously...

Take care,

Simon

July 17, 2002

Kit Kellison wrote:

> It probably is true that most people happily on

> synthroid after RAI or thyroidectomy have much

> less reason to post on web-sites.

Simon wrote:

> Or they are all too lethargic to bother.

Or, they just believe their docs that all the things that are bothering them

now are unrelated to RAI or the thyroid.

Pam B.

July 17, 2002

Simon, I am fuzzy about what is with and without

units. I suppost units means the amount of

something per standardized unit of measure like

they do with parts per thousand or so much per

ml? All I get on my test form is a number. My

TSH was .004 last time. I just called the

office, my new results are in, but they are going

to call me back. I don't remember the fT3 and

fT4 numbers, I should get a copy, I know.

If it was a clear cut RAI is the best

> treatment, they wouldn't

> offer people the choice of surgery, drugs or

> RAI. Typically the

> patient is given this choice in the UK,

> although often without

> the figures and advice necessary to make an

> informed decision.

They don't really seem to be giving most people

in here a choice. I have to wonder why there is

a difference in protocol between the U.S. and

other countries, and why they usually advocate

RAI (as it is termed here). I tend to think for

something as touchy as radiation or thyroid

disorders, they would err on the side of caution,

whatever that means. I am not making the

mistake, however, of believing they are in the

business to get us well, they are in business

period.

I absolutely do follow my gluten-free diet

religiously, although it is very difficult to

find out where wheat is in a product. Many

manufacturers refuse to commit either way because

it is difficult for them to find out. Our

labeling laws here SUCK. We have to call the

manufacturer each time we want to buy something

and often have to read the lot numbers over the

phone. Incredibly complicated. I can't believe

it is easier for them to answer all our questions

individually than it is to just label the damned

product. Even when they do claim to be gluten

free, they are often cross-contaminated. At

least it give me something real to use my

hyperthyroid obsessiveness for.

Thanks for taking the trouble to reply, I am

waiting for Elaine's book to come in the mail

from and Noble, but in the meantime, this

group is a goddesssend (lol)

Kit

--- Simon Waters

wrote:

> Kit Kellison wrote:

> >

> > Thank you Simon, for your timely reply.

> > I have been so sick for so long, I really am

> > thinking that ATD's might take too long

>

> I'm losing track - too many new people - didn't

> you post your

> numbers without units?

>

> I should probably go read the archive....

>

> > It probably is true that most people happily

> on

> > synthroid after RAI or thyroidectomy have

> much

> > less reason to post on web-sites.

>

> Or they are all too lethargic to bother.

>

> The people closest to me who did RAI aren't

> miraculously better,

> but they aren't obviously worse than they were

> doing on ATD.

> Neither have ever posted to mailing lists of

> Internet newsgroups

> in their lives. Neither had eye involvement

> before or after.

>

> Personally I'm on the second round of ATD

> (having had surgery in

> between) and whilst I was fine for a few years

> after surgery, my

> current condition is worse than pre-surgery ATD

> drug treatment.

> Whether you can blame the surgery is a moot

> point, I'm not a

> clinically controlled trial.

>

> Given the risks involved I haven't seen

> anything to make me say

> - yes give me RAI.

>

> That said if the drugs (when prescribed

> correctly) hadn't made

> me euthyroid I would happily do whatever it

> takes.... prefering

> surgery to RAI, but whatever it takes. RAI can

> take 3 or 4

> months to take proper effect, so it isn't a

> quick fix. Surgery

> is the " quickest fix " , but I'm living proof it

> isn't the perfect

> treatment, still I think I'd prefer surgery to

> RAI.

>

> > I want to seem

> > like a reasonable person when I first see my

> > endo, so as not to get off on the wrong foot,

> but

> > being a pushover is not in my make-up.

>

> If it was a clear cut RAI is the best

> treatment, they wouldn't

> offer people the choice of surgery, drugs or

> RAI. Typically the

> patient is given this choice in the UK,

> although often without

> the figures and advice necessary to make an

> informed decision.

>

> In the US you seem mostly to be pushed to

> RAI... No one has ever

> adequately explained why the difference. I

> can't even believe it

> is cost as Methimazole based drugs are so

> cheap, unless it is

> all those blood tests they can skip if they

> make you

> hypothyroid.

>

> Celiac's - interesting - the jury is still out

> as to whether it

> is a related disease, or whether people who

> gets Grave's are

> just more like to get Celiac's (specific HLA

> and tissue types

> are more prevelant in sufferer of these

> disease). Anyway giving

> up gluten completely has been known to " cure "

> Grave's disease in

> some Celiac patients - so follow that diet

> religiously...

>

> Take care,

>

> Simon

>

__________________________________________________

July 17, 2002

Pam Brisse wrote:

>

> Kit Kellison wrote:

> > It probably is true that most people happily on

> > synthroid after RAI or thyroidectomy have much

> > less reason to post on web-sites.

>

> Simon wrote:

> > Or they are all too lethargic to bother.

>

> Or, they just believe their docs that all the things that are bothering them

> now are unrelated to RAI or the thyroid.

Yes one I know was definitely beginning to blame menopause for

what looked like hypothyroid symptoms to me.

July 17, 2002

You're good , I was " pumping " when I sent that out yesterday (imagine

that!)

I was on 300 mg and lowered to 200 ( I think I was thinking of 4 tabs - hyper

brain fog).

I was surprised to hear from my dr.s office today. Dr. wanted to know what

my decision was. I had to answer honestly, if they had to have a decision

right this monent it would have to be no. So Dr. wants me to start PTU back

immed.and find another dr.

At any rate, on with the search for another dr. I am in the Austin area if

anyone has used or knows of a good endo I would like to know their name.

Thanks

Debbie in Texas

July 17, 2002

Debbie,

That doc did you a favor! What incompetence! Wish I had a referral for ya,

but I don't. Have you looked on the top docs list? Call around and see if

you can find an endo who specializes in thyroid. God bless.

July 17, 2002

Simon wrote:

>>>Yes one I know was definitely beginning to blame menopause for

what looked like hypothyroid symptoms to me.<<<

And my first endo said it was hyper symptoms that were more menaopausal.

Jody

_________________________________________________________________

MSN Photos is the easiest way to share and print your photos:

http://photos.msn.com/support/worldwide.aspx

July 17, 2002

Hi Debbie in Texas,

How close to Houston is Austin? If within a couple of hour drive, I would

try Dr. Ridha Arem. He is the author of the book The Thyroid Solution. A

woman on another board I belong to saw him yesterday and is impressed. Tori

sees him tomorrow. Worth a try anyhow.

Jody

_________________________________________________________________

Chat with friends online, try MSN Messenger: http://messenger.msn.com

July 17, 2002

Debbie,

Hi there, fellow Texan! Where are you? I live outside of Dallas. Anyway,

I agree with everyone else....RUN FROM THIS DOCTOR! She sounds awful. I

haven't taken PTU, but am on Tap, so I don't know the dosages for PTU. One

thing that strikes me is, why would she be in such a frenzy over liver

damage? Is there something on your blood work that makes her worry about

this? Because there are people on this board who have taken ATD's long term

and from what I've read, it's only in the states that this seems to be such

a big deal.

Anyway, I feel for you and think you need to find someone else. Do you have

all your lab work for the last three years? It would probably be good to

know what your levels have been. What are they now?

Kristi

Graves Disease - ATD - REI - frustration