Re: Re: PTU

[Guest guest]

Benedryl helps.........

[Guest guest]

Gail to help relieve the itching you can take benadryl to see if that

will help.

Sandy~Houston

On Wed, 08 Oct 2003 15:18:31 -0000

" gail_salcedo " wrote:

[Guest guest]

Gail,

How long have you been on the PTU ?

-Pam L-

[Guest guest]

Gail, you are gonna have to take this bull by the horns, and it

doesn't matter if you have a HMO or not. Get a copy of every lab and

every test they've ran on you. Tell them is for your YOUR file. If

you just dutily agree with everything your dr tells you, and when you

said they said that you were 'severely high', that tells nothing. We

all get told some of the most ridiculous things in the begining and

even later if we chose not to learn about this disease. If I'd

listened to what every dr has told me, I'd have gotten rid of my

thyroid and then I'd really be in a pickle. Trust me when i saw, you

think you got problems, try going hypo and NOT be able to get it 'in

check'. Get those labs and then post them here. If you don't, you'll

wish you had later.

I have been overmedicated on ATD's (metihimazole) and it ain't NO FUN.

I never thought a dr who treated wouldn't know how to treat it, but

guess what? It don't work that way. It's better for you in the long

run to learn all you can to help with your progress towards gaining

remission. I've been on ATD's and Atenolol for almost 2 yrs now. It

takes a while for the meds to get kicked in, then it's up to the DR to

do what's right, and if he/she doesn't know how to, then you're in the

right place now. AT least here you can get more detailed info than

what I was used to getting from my dr. And just maybe, you won't have

to go through what some of us have been subjected to. :-)

Sandy~Houston

On Wed, 08 Oct 2003 17:14:59 -0000

" gail_salcedo " wrote:

[Guest guest]

Hip, hip hooray !

On 450mg and at three weeks, you may already be ready for a dose reduction !

Increased itching is a very good sign in this case.

Go get labs today. Have them MAIL you a copy !

No doctor appointment needed, just his / her order to the lab. Call and tell

them you are feeling 'sick' ??? something to force them to order labs. This

IS a reasonable request, but I often had to push my story just a tad, in

order to force the lazy woman at the front desk to get up off her butt and

ASK the doctor a question for me. Like asking him to order labs.

She had so many 'lines' to make all of us give up and go away and not bother

her. *(* & #$^!

You can feel your way through the conversation, but you really do want labs

now. And also those first lab result copies. Say they are for your records.

Until you have copies of these things you have no control over your own body

Betcha a nickel your thyroid levels are responding beautifully to the meds.

Now just do not sit and wait for the appointment. That high a dose is

possibly way to much by now. But you MUST have labs first, before you do

anything.

-Pam L-

[Guest guest]

You tell her Sandy !

Some how her story is beginning to sound way too familiar. They may overdose

her, tell her the meds are killing her, and she has no choice now but to

take the RAI. Very old tactic, and gets the patient out of the way, the

cheapest way possible.

OR... if she fights them on staying on the meds by finding a different

doctor , they will shoot her high as a kite, drop her back down, and watch

her flop around till she finally believes them. That the meds are never

going to work. This should be a crime, but it happens a lot.

The patient MUST be in control. And fast .

Gail,

If you allow them to badly overdose you, your liver numbers and white blood

count will get very, very bad, and they can then legally refuse to do

anything but force you to take the RAI. This means no way to get a scrip for

your PTU !

We are not making this up. It happens a lot. It is much cheaper for an

insurance company, the way they have their guide lines for lab costs.

-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]

Pam

Excuse me if I'm wrong, but I thought the white cell count problem (I

can't spell the proper word - agran..) was a rare reaction that could

happen at any point, but more likely in the first few months of

treatment, I didn't realise it was dose related. Or is what you're

referring to something different?

elsie

Gail,

If you allow them to badly overdose you, your liver numbers and white

blood

count will get very, very bad, and they can then legally refuse to do

anything but force you to take the RAI. This means no way to get a scrip

for

your PTU !

[Guest guest]

Amen Pam! I hate the way these Endo's make things appear to be

something when it's exactly the opposite. I have a remedy for all

dr's who pull this stunt. Fire them and get a new one. Grrrr! lol I

get so frustrated!

I'd like to think that most of these dr's are really caring people but

the more I read, the less I can go with that 'dream'.

If I'd known what my DR Dummie #2 was doing, I'd have never gotten as

bad off as I did! It was awful being hypoT due to too many meds. I

just shake my head when I even read how tired people are of being

hyper....cuz ya know, those little pills daily if dosed appropriately,

usually do work. That sad thing is that the DR's don't want them to

work, cuz then it's MORE WORK for them! I'd like to slap the whole

bunch of them! Line EM Up! lol :-)

Sandy~Houston

On Wed, 8 Oct 2003 11:09:50 -0700 (Pacific Daylight Time)

" -Pam L - " wrote:

[Guest guest]

Hi Elsie,

You are correct, in that the liver numbers are the most likely to show

change first.

But... logic tells me if a person is badly overdosed on a drug that

surpressed the entire immune system, and left there way too long, the WBC

can not help but be affected. How could it not ?

Perhaps my years of helping with several Graves' groups everyday, has caused

me to JUMP to possible worst case scenarios, because we see this crap all

the time.

It is possible that her doctor will see the THYROID numbers going down....

be normal or even hypo, and in ignorance ? tell her to continue on the same

high dose... because he falsely believes hyper patients are treated the same

as hypo.... which means he will wait for the TSH, the pituitary hormone, to

change.

The TSH may, or may not change for those of us with antibodies fooling our

thyroids. The antibodies are in our blood and they tell the thyroid to make

more juice.

The brain ( pituitary) then sees that there is plenty of juice, and does not

ask for more ( thank G-d ! ) by creating TSH.

My TSH stayed at .02 and .002 depending on the lab,

for THREE YEARS ! If my ATD dose had been used to judge my dose I would have

been so hypo my entire body would have shut down and I might not have come

out of the coma. Doctors DO mess up this way IF they do not have experience

with ATDs.

I am still deeply emotional on this subject. I am the one that found Donna

Lee, and stuck with her through her mess. They refused to give her the

proper meds because her TSH was not rising. We got her on line, and managed

to get ahold of her mother that night. Her Mom drove three hours in the

middle of winter , in the dark of night through Minnesota to come to her

daughters distress call. The Mom did not know what was wrong, but knew it

was very serious.

We stayed up very late that night. A group of us. We kept Donna Lee awake,

and waited for her Mom. The other board members stuck there while I went and

did my short night job, and I rushed back home to continue. Somehow I had

managed, over time to get Donna Lee to trust me. She was struggling for life

as the coma tried to get her.

We were strangers on the Internet. And she was cold and wanted to sleep. Her

mind was going. We got her dogs to help us.

It became increasingly difficult to keep her with us. I can never forget her

typing " im cd " ( I am cold ) All of her words were like that the last two

hours.

I had to QUICKLY explain to her Mom, who had never used a computer before,

to NOT let Donna Lee go to sleep. As fast as I typed that, she HAD gone to

sleep. Mom woke her up, called the ambulance, and I had to explain

everything very quickly. Mom was telling me how far away the ambulance was

by the sound.

See the hospital was refusing to treat her based on TSH.She had a total

thyroidectomy, and we had gotten her in to the doctor several times for help

They kept refusing to judge by her symptoms. Only TSH.

I spent several weeks online, several times a day, working and trying to get

her properly medicated. She DID everything she was supposed to do. And NO

meds because of her TSH.

Mom had to be there to FIGHT.

Donna Lee did live. But she now has leukemia reappear after many years of

remission, that should have never come back. She has permanent heart damage,

and her voice is very, very low. Sounds like it is an effort to breath.

She was in a coma for several days.

The doctors at the hospital, that her Mom got ahold of, said the only reason

she is alive today, is because of what WE did online.

This is only one story. We have many.

If you think this is an isolated event, think again.

Most are not as dramatic, but every single one of us that has been overdosed

on ATDs, has learned the only person that will take care of business is

ourselves.

And we MUST have lab result copies to be able to do this.

And we MUST do these things BEFORE we become too hypo, because once there

the brain does not work well, thinking is confused, and we have no fight

left in us. The very hypo patient only wants to go to bed. This is how

nature makes death painless.

Don't anyone else put yourselves in danger. I have a wonderful man in my bed

and he dealt with my mid-night excursions to the computer every night that

time, and understood. He would quietly ask how she was, as I slipped back in

beside him. :-), but I really do not want to do this again.

For the old timers, he even got to talk to Jody on the phone the day we

found out Donna Lee was going to live ! Gosh, that was a day full of JOY !

And an awful lot of tears.

Your turn Sandy ....

I have to go to work now. Reality bites.

-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.