Re: Re: doctors visit today...me too

[Guest guest]

Good Morning All !

Gosh... I woke up wondering how Shelly is.

I am relieved to see more replies to her first thing this morning. Which is

the reason Shelly, IM is great, but look how much better this is :-)

There is SO MUCH information to be covered. Oh... this way we have e-mails

to save and double check too.

Shelly... it is really impossible to say if you are too hyper or too hypo

from what we see in your symptoms right now. The current dose you are on is

not working, so a FREE T 4 is really important.

While a FREE T 3 would be good, I never had one till I was double checking

my possible remission status, two months after I had stopped all antithyroid

medications. It was $155 for that one test. That buys a lot of food, which

will do you more good right now.

When you are closer to stable, a total T3 will be a good idea, and that is

just under $50. But right now, getting your dose right is the priority, and

the T3 would only be added info, not emergency status at all.

Your T3 levels are 'probably' fine... because you are on two drugs that slow

down conversion of FT4 into T3. Both PTU and the beta blockers based on

Propranolol ( the ones you are on do this).

My friend Jody always said I was very unique it working with FT4 only... BUT

:-)... I watch all the others with the long list of expensive tests every

month, and you know what ? They base their dose changes on the FT4. So to me

the rest of that stuff would be nice, but we really can do just as well as

all the rest of them, and not have all that stuff done.

I did manage to hit remission , and did not spend a bunch of money. In fact,

for ME, the lack of funds was very likely one big key to my success. I HAD

to double guess everything. But THAT forced me to learn more than the

average patient, and created a very complete understanding of all of the

possible factors involved. I could not just sit back, get labs, and hope for

the best.

Shelly... right now you must feel you are at a disadvantage, but I really

believe, that as long as you are willing to get in there and learn, you to

can follow in my footsteps, and understand Graves' much better than the

average patient, because we must. That was the whole key to complete success

Is there a GP to run that lab only ?

If not, another possibility is an urgent care place. We have one that is $33

to get in the door and have a doctor see you. he will not know much about

Graves' but he can order labs. Call ahead and ask the prices.

You need 'in the door price' and FREE T 4 price. They do not have people ask

this ahead of time, so we must work our way through the phone maze. The

doctors never know any prices either. I get the prices ahead of time, and it

is most often a trip into the back to speak with the book keeper, where that

'speciality' is.

I know I am not alone today wishing you the very best, and waiting on that

darn lab to see which way you really are swinging right now.

The most important thing is for you to question everything. And I hope this

main message I was focusing on last night, is starting to happen.

I was so very sick when I first started on meds, because I had avoided

medical care for a very long time, thinking I could out last what ever was

happening to me. Stupid mistake on my part, it only caused a huge bill from

being diagnosed in emergency with a bunch of tubes and monitors hooked up to

me. And being psychotic to boot.

You may be in the same boat right now, having waited too long.

It only makes it hard to think at this point, and does NOT affect the end

result at all !

You are going to have the doctors tell you , you are the worst case they

have ever seen.... this is a tired old line, and at least a third of us , if

not more have heard it more than once.

It is not true.

It is only a scare tactic for force RAI down our throats to make it easier

for the doctor... not us !

A bad result of RAI only makes a fat, tired, passive patient, that does not

have the fight left in them, and they often just go to the doctor and do as

told. They do not demand answers. They can be seen less often, as being

slightly hypo forever and very sad, because of lack of proper care, will not

kill them.

When treating us with antithyroid drugs, the doctor must have knowledge in

proper dosing ( which very few do), and they must spend time dealing with

feisty women ( for the most part) that want perfect answers. Gosh... that

might be harder for them, as they have to pay attention.

RAI takes 10 years to completely destroy the thyroid. Med changes are

constantly needed.

RAI causes the patient to become more hyper before it starts to work.

With the drugs and good care, we are stable in 8 weeks.

Then our adjustments change how we feel in days. You will learn those after

RAI need 6 weeks for adjustment change to be felt.

RAI increases the bad antibodies that ARE Graves'. There is nothing wrong

with our thyroid itself. It is only doing as told by the antibodies.

The drugs get rid of the antibodies.

Extra antibodies created by RAI can cause worse eye disease. The steroids

given to prevent this only prevent it while they are being used for the

first month or so. Eye disease after RAI can appear any time in the next 20

years because or this increase in ABs. The studies on this preventive

steroid use have never followed patients longer than one year.

IF you were to take the RAI and kill your thyroid, you will take at least a

year or two to get better. Plus you MUST have the money every month to buy

the replacement hormone. If not you do die.

What IF life changes for the worse...years down the road. How would you

afford replacement hormone every month for the rest of your life ?

I do NOT want to be munching cat food as an old lady because I had to buy my

meds and Medicare does not pay for all of it.

There are no guarantees in life for ANY of us, and looking ahead is real

smart, no matter what our income is right now.

Once I got my feet back on the ground, I took an extra job. I 'lowered '

myself... and I clean an office building at night. Many will always feel

this must mean I am of a lower class.

But you know what... it is easy work, and for me, a great stress reliever.

This is MY form of medical insurance and my safety net. I no longer have to

worry about money and Graves' that way, because.... IF anything were to

change... and I become very ill... I can work 13 to 15 hours a week, split

into 7 days. This will pay my mortgage, all utilities, and just enough left

over I could sale shop the groceries and eat just fine.

A wonderful stress reliever in my book. And very worth lowering myself. I am

all alone, no one to bother me, and no rush. My headphones keep my mind

happy and I have even been known to sing along on the goods songs. Thank

goodness I am alone. LOL Plus... since I am not destitute because of this

extra job, I now work a lot less during the day, which gives me time to

enjoy life and my friends and family. Time is my greatest joy.

I even found an unexpected bonus doing this type of job. Once people find

out I am 'only the cleaning lady' ( they do not know the rest of my type of

work or history / education ), I find those that have shallow life values,

leave the scene quickly. Sure makes it so much easier to know who possible

true friends are, right up front.

Once you get stable, and get your strength back, you can find some sort of

extra work. I managed my Graves' costs all these years for about $75 a month

That IS do-able.

The costs the first few months are higher, but mostly because I was letting

the doctor decide what tests to run, as I had no clue and no support. Took a

couple years to pay all that off, but it is easily done, a bit at a time.

I have gone on and on... but I want you to know this can be done very well

without high medical costs. And the nature of the Internet, gives you a

group of patients that are not looking at cost like we do. But... the same

thing also gives us a group of people that ARE on the higher end of the bell

curve as far as intelligence. :-)

Intelligence is simply the ability to problem solve. :-)

-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]

Wow Pam, I loved reading about your story. My hat is definately 'off to you'.

This is enough to give anybody the hope that there is hope. :-)

Sandy~houston

Re: Re: doctors visit today...me too

Good Morning All !

Gosh... I woke up wondering how Shelly is.

I am relieved to see more replies to her first thing this morning. Which is

the reason Shelly, IM is great, but look how much better this is :-)

There is SO MUCH information to be covered. Oh... this way we have e-mails

to save and double check too.

Shelly... it is really impossible to say if you are too hyper or too hypo

from what we see in your symptoms right now. The current dose you are on is

not working, so a FREE T 4 is really important.

While a FREE T 3 would be good, I never had one till I was double checking

my possible remission status, two months after I had stopped all antithyroid

medications. It was $155 for that one test. That buys a lot of food, which

will do you more good right now.

When you are closer to stable, a total T3 will be a good idea, and that is

just under $50. But right now, getting your dose right is the priority, and

the T3 would only be added info, not emergency status at all.

Your T3 levels are 'probably' fine... because you are on two drugs that slow

down conversion of FT4 into T3. Both PTU and the beta blockers based on

Propranolol ( the ones you are on do this).

My friend Jody always said I was very unique it working with FT4 only... BUT

:-)... I watch all the others with the long list of expensive tests every

month, and you know what ? They base their dose changes on the FT4. So to me

the rest of that stuff would be nice, but we really can do just as well as

all the rest of them, and not have all that stuff done.

I did manage to hit remission , and did not spend a bunch of money. In fact,

for ME, the lack of funds was very likely one big key to my success. I HAD

to double guess everything. But THAT forced me to learn more than the

average patient, and created a very complete understanding of all of the

possible factors involved. I could not just sit back, get labs, and hope for

the best.

Shelly... right now you must feel you are at a disadvantage, but I really

believe, that as long as you are willing to get in there and learn, you to

can follow in my footsteps, and understand Graves' much better than the

average patient, because we must. That was the whole key to complete success

Is there a GP to run that lab only ?

If not, another possibility is an urgent care place. We have one that is $33

to get in the door and have a doctor see you. he will not know much about

Graves' but he can order labs. Call ahead and ask the prices.

You need 'in the door price' and FREE T 4 price. They do not have people ask

this ahead of time, so we must work our way through the phone maze. The

doctors never know any prices either. I get the prices ahead of time, and it

is most often a trip into the back to speak with the book keeper, where that

'speciality' is.

I know I am not alone today wishing you the very best, and waiting on that

darn lab to see which way you really are swinging right now.

The most important thing is for you to question everything. And I hope this

main message I was focusing on last night, is starting to happen.

I was so very sick when I first started on meds, because I had avoided

medical care for a very long time, thinking I could out last what ever was

happening to me. Stupid mistake on my part, it only caused a huge bill from

being diagnosed in emergency with a bunch of tubes and monitors hooked up to

me. And being psychotic to boot.

You may be in the same boat right now, having waited too long.

It only makes it hard to think at this point, and does NOT affect the end

result at all !

You are going to have the doctors tell you , you are the worst case they

have ever seen.... this is a tired old line, and at least a third of us , if

not more have heard it more than once.

It is not true.

It is only a scare tactic for force RAI down our throats to make it easier

for the doctor... not us !

A bad result of RAI only makes a fat, tired, passive patient, that does not

have the fight left in them, and they often just go to the doctor and do as

told. They do not demand answers. They can be seen less often, as being

slightly hypo forever and very sad, because of lack of proper care, will not

kill them.

When treating us with antithyroid drugs, the doctor must have knowledge in

proper dosing ( which very few do), and they must spend time dealing with

feisty women ( for the most part) that want perfect answers. Gosh... that

might be harder for them, as they have to pay attention.

RAI takes 10 years to completely destroy the thyroid. Med changes are

constantly needed.

RAI causes the patient to become more hyper before it starts to work.

With the drugs and good care, we are stable in 8 weeks.

Then our adjustments change how we feel in days. You will learn those after

RAI need 6 weeks for adjustment change to be felt.

RAI increases the bad antibodies that ARE Graves'. There is nothing wrong

with our thyroid itself. It is only doing as told by the antibodies.

The drugs get rid of the antibodies.

Extra antibodies created by RAI can cause worse eye disease. The steroids

given to prevent this only prevent it while they are being used for the

first month or so. Eye disease after RAI can appear any time in the next 20

years because or this increase in ABs. The studies on this preventive

steroid use have never followed patients longer than one year.

IF you were to take the RAI and kill your thyroid, you will take at least a

year or two to get better. Plus you MUST have the money every month to buy

the replacement hormone. If not you do die.

What IF life changes for the worse...years down the road. How would you

afford replacement hormone every month for the rest of your life ?

I do NOT want to be munching cat food as an old lady because I had to buy my

meds and Medicare does not pay for all of it.

There are no guarantees in life for ANY of us, and looking ahead is real

smart, no matter what our income is right now.

Once I got my feet back on the ground, I took an extra job. I 'lowered '

myself... and I clean an office building at night. Many will always feel

this must mean I am of a lower class.

But you know what... it is easy work, and for me, a great stress reliever.

This is MY form of medical insurance and my safety net. I no longer have to

worry about money and Graves' that way, because.... IF anything were to

change... and I become very ill... I can work 13 to 15 hours a week, split

into 7 days. This will pay my mortgage, all utilities, and just enough left

over I could sale shop the groceries and eat just fine.

A wonderful stress reliever in my book. And very worth lowering myself. I am

all alone, no one to bother me, and no rush. My headphones keep my mind

happy and I have even been known to sing along on the goods songs. Thank

goodness I am alone. LOL Plus... since I am not destitute because of this

extra job, I now work a lot less during the day, which gives me time to

enjoy life and my friends and family. Time is my greatest joy.

I even found an unexpected bonus doing this type of job. Once people find

out I am 'only the cleaning lady' ( they do not know the rest of my type of

work or history / education ), I find those that have shallow life values,

leave the scene quickly. Sure makes it so much easier to know who possible

true friends are, right up front.

Once you get stable, and get your strength back, you can find some sort of

extra work. I managed my Graves' costs all these years for about $75 a month

That IS do-able.

The costs the first few months are higher, but mostly because I was letting

the doctor decide what tests to run, as I had no clue and no support. Took a

couple years to pay all that off, but it is easily done, a bit at a time.

I have gone on and on... but I want you to know this can be done very well

without high medical costs. And the nature of the Internet, gives you a

group of patients that are not looking at cost like we do. But... the same

thing also gives us a group of people that ARE on the higher end of the bell

curve as far as intelligence. :-)

Intelligence is simply the ability to problem solve. :-)

-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.