Re: new member, just went back to endo #1

[Guest guest]

,

It looks to me like you have been told a whole bunch of fibs. It happens.

Please come over to MediBoard and start with the Thyroid101 thread we have.

This link will get you to the main board. Then just join the Graves' group.

Sorry... but there is so much wrong with all you have been told it would

take me all day just to reply to YOU.

You MUST have proper labs BEFORE taking the PTU. Then labs every 4 weeks.

PTU must be split every eight hours.

NO you will not inevitably end up hypo. That is an outright LIE.

You WILL feel better and you can save your thyroid.

-Pam L-

3 1/2 years Graves', TED, and PTU. Remission due to SLOW reduction of PTU

(despite an incompetent endo ! ), improved lifestyle, excellent nutrition,

herbs, and looking at the big picture.

Pills alone only help the symptoms. We must help our bodies to heal.

[Guest guest]

Hummm... easier if I GIVE you the link huh ?

http://www.mediboard.com/ubb/ultimatebb.php

[Guest guest]

Hi Pam,

I have visited MediBoard before, and have read the Thyroid 101 thread

already. I take it that the messages don't come into one's inbox. I am just

learning about all I need to know, and so I may get some facts confused or

forget what I've been told, but basically I think I have learned a lot in a

short amount of time.

On Thursday, I went to my GP to get a baseline on liver, kidneys, WBC, CBC,

and thyroid levels (at my request). I said " do I need to avoid exercise? "

And he said yes. I don't like that I have to find out and initiate

EVERYTHING, but that seems to be the way it's working right now. I asked if

I could come back in a month to have blood work done, and he said yes. So I

will have it done every 4 weeks. I will take the meds every 8 hours (not

12, as I've been told), and will tell the endo I am doing this when I see

him. I need a new endo, and don't know where to go (I live in Manhattan and

have Empire HMO). It was suggested that I ask people on the MediBoard for a

recommendation, which I will do.

Thanks,

At 03:00 PM 6/21/2003 -0700, you wrote:

>,

>

>It looks to me like you have been told a whole bunch of fibs. It happens.

>Please come over to MediBoard and start with the Thyroid101 thread we have.

>This link will get you to the main board. Then just join the Graves' group.

>

>Sorry... but there is so much wrong with all you have been told it would

>take me all day just to reply to YOU.

>

>You MUST have proper labs BEFORE taking the PTU. Then labs every 4 weeks.

>PTU must be split every eight hours.

>

>NO you will not inevitably end up hypo. That is an outright LIE.

>

>You WILL feel better and you can save your thyroid.

>

>-Pam L-

>

>3 1/2 years Graves', TED, and PTU. Remission due to SLOW reduction of PTU

>(despite an incompetent endo ! ), improved lifestyle, excellent nutrition,

>herbs, and looking at the big picture.

>Pills alone only help the symptoms. We must help our bodies to heal.

>

>

[Guest guest]

Hi . In late Feb. of this year, something like the 27 or 28, I

sent an article I wrote for a local thyroid support group newsletter to

this list for suggestions. Not having internet access I couldn't link it

to the homepage but if you want to check the archives look it up and

show it to either of your endos. It's all about ATDs. I would make one

minor change but I'm sure that point's not what your dr. would attack.

As Pam said, it could take all day to respond to the misconceptions your

endo's laboring under.

He said that he knew someone taking 1 pill of ATD's a day. Until a

patient is on an extremely low dose ATDs should be taken at least twice a

day, 3 for PTU. So someone taking just 1 ATD a day is on such a low dose

that to have that reaction is extremely rare. I would say, " I hope that

dr. was sued for malpractice because a competent dr. would have caught

this condition a bit earler. " My stock response to the line, " I know

someone dead or near death's door from ATD's " is " That RAI increases the

chances of developing thyroid eye disease 15-30%. And I know more than

one person who developed serious TED after RAI. "

Keep reading and, within reason, take your time. Serious hyperthyroidism

does necessitate prompt treatment, which is why ATDs properly

administered are the best place to start, and usually, end. They allow

the patient time to get informed and may well bring the patient into

remission.

Take care, Fay

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[Guest guest]

Hi ,

Not even I " was at death's door " from ptu. In fact, I took it for another

month after my severe reaction. It took that long for someone to figure out

what was happening. I think if, in the beginning, if one is very careful to

monitor sore throats there is very little danger. After 8 years, I'd say just

beware of any unusual severe illness which include symptoms of vasculitis.

AileenAileen Fletcher

Assistant professor of Art

New River Community College

Dublin, Va. 24084

nrfleta@...

, ext. 4468

>>> cfyoung4@... 06/22/03 08:41 AM >>>

[Guest guest]

Hi ,

Again Pam is right you have been completely lied to.

All Endo's push RAI. Its just the way it is. You either choose it

or you don't.

If you choose ATD's it doesn't mean you are going to go hypo

eventually. It may mean that but so what why not let it happen

naturally it can happen to any of us. Also if it doesn't you get

remission instead of a bunch of complications. Like Pam said, it

would take a a full day to reply to all that you wrote. Both Endo's

are wrong.

You need to have your liver checked every 3 month's the CBC test and

at first you need the test right off the bat before they put you on

anything. To prevent some sort of allergic reaction that is very RARE

but this is how they are scaring you.

I have been on PTU since 2/2002 started out at 300mgs down to 50mgs

right now and I'm doing very well and you can to. You have to learn

about this disease and get the facts. I've had stable labs improving

every month and my TSI has improved every 3 months so far and my

thyroid is still intact and life is good.

My first Endo lied to me too I am very very lucky I have a good endo

and she is the best and you can stay on PTU for 50 years if you never

go into remission. Think about it its the same as being on Synthroid

but with Synthroid its the REST OF YOUR LIFE your looking at. With

PTU there is always that chance that you won't need it anymore so my

gamble I think is safer. If I go into remission I don't need any

drugs and don't risk Eye disease.

Eye disease is rare with ATD therapy my eyes have actually improved

and my eye glass prescription is less than what it use to be because I

can SEE better because of PTU therapy.

Alegra

-

[Guest guest]

:

I was on PTU for 18 months and am not hypo from it. I got the same

story from my 1st endo, who said " sure, take the meds but you'll be

back in a year for the RAI. " She was WRONG.

You can tell your doctor that in order for anyone to drop dead taking

1 PTU a day, that person would have have the absolute WORSE medical

care ever, and it wasn't the PTU, it was the doctor - if that ever

really happened.

Even if there is a possiblity that my poor thyroid will at some point

burn out and go hypo, I don't see forcing it with RAI - that's the

only for sure way to go hypo. There are so many things we can do to

keep ourselves healthy - RAI removes most of those options. Graves'

is an immune problem, our thyroids are just trying to do their best

under difficult circumstances.

Especially if you have very mild levels, take the time to research and

don't make any decisions to quickly. What you decide to do with your

thyroid affects the rest of your life.

Good luck.

dx 1998, 18mos PTU, in remission

>

>

> Hi,

> I have been consulting with two endos for my recently developed

> hyperthyroidism. Just went to endo #1, who warned me about ATDs, and

told

> me a scary story about a woman who was " taking 1 pill a day and

wound up

> dead from having no WBCs. " He said since I have a mild case of

hyperT, with

> RAIU of 26% (normal), that I might continue this way and " will

definitely

> wind up hypo eventually no matter what " (since I have TPO and TSI

> antibodies). So...why not get it over with and have the RAI is his

> thinking. He said the alternative is I can wait it out and see if

the

> disease progresses as hyper or if I go hypO. He wants me to stay

away the

> ATDs, as he views them as toxic. I just stared at him, and he said

I'm

> making a mountain out of a molehill. I know this isn't the biggest

problem

> in the world, but I don't want to make a mistake. Endo #2 is sending

me a

> prescription for PTU in the mail, and he said he would choose the

RAI, but

> he " doesn't have a problem " with me going on the meds. Does the

medication

> simply prolong the inevitable (going hypO)? Maybe I should just wait

it out

> on a low dose of beta blocker. I am confused.

>

[Guest guest]

Dear Fay, Aileen, , Alegra, and ,

Thank you all for writing. I have read and re-read your messages. I have

just started the PTU today, and have decided against the beta blocker (the

doc who prescribed it didn't check my BP, which is typically and currently

100/70 -- I fear a hypertensive med would make me pass out!). My main

concern now is finding a good endo. I live in Manhattan, so there should be

SOMEONE here that I can trust! As I mentioned, the endo who gave me the PTU

prescribed it for me to take twice a day, which I think is, well...wrong. I

am going to take it 3x/day. But I don't trust him to medicate me properly

because of that.

Apparently a lot of you have done nicely despite the struggle with doctors.

I hope to also!

Gratefully yours,