Re: Just curious and alittle angry

[Guest guest]

Donna,

You may be surprised to hear that RAI is the number 1 choice of treatment in

the USA, but NOT in the rest of the world!

Probably the number 1 reason is: $$$$$$$$ for the pharmaceutical companies.

And it wouldn't surprise me if I heard that doctors and insurance companies

got kick backs from it..

One theory I have and many would agree...from a doctors stand point, it is

easier to treat a patient if they are hypo from behind a desk. BUT that

treatment is better for the doctor, NOT the patient! My OLD endo kept trying to

put

me hypo with the ATD's...LOL...geesh!

And with hypo it is easier to blame hypo symptoms on age, menapause, bad

eating habits, lack of excercise, etc. (basically their not related to the

thyroid

attitude)

Many doctors will start pushing RAI onto their patients during a first visit!

This is SOOOO WRONG!!! NO ONE should be put into that position to make a

decision on a such a serious permanent treatment until their thyroid hormones

are within normal range! And they have been give ALL 3 of their treatment

options and the risks of the 3 have been fully explained to the patient.

Doctors know stress aggrivates graves disease, so during those first

wonderful visits with these endos, they lay this on us?...YOU MUST HAVE

RAI!!!...geesh!

Unfortunately, far too many people are never really informed of the full

risks of RAI or what the risks are for staying on ATD's or if they have

surgery..

The comparison of risks would sell itself:

1)RAI: Risk is at least 15% (by the standards of the national organizations,

but they are finding the risks are much higher) to get TED or the skin

disease. Plus the cancer risks and normal radioactivity risks, especially since

the

one dose of RAI is one of the highest for a single dose of radioactivity for

ANY single treatment!) Plus, the radioactivity is absorbed by other parts of

the body also, not only the thyroid.

You would still have to take a pill for the rest of your life daily..

2) With surgery, the risk is a 1% risk of damage to the vocal cord nerve.

With an expert surgeon, the risk is less. Risk of damage to the parathyroid

glands..they can be reimplanted if they are accidently removed. If they are

permanently damaged, you take calcium for the rest of your life. Plus the

normal

anestisia risks.

3) With ATD's, the risk is a 1% risk of liver damage. According to the

national organizations you can only stay on these for about 18 months...well,

people have been on them for years and years! And if at any given time you can

no

longer tolerate atd's you can choose one of the other options. Plus you have

a chance for remission.

Which would you choose? Doctors know this!!! It makes me upset too, that

the first thing offered is RAI! The only thing we can do is help people to

understand their options and let them choose what is best for THEM!

lil deb

[Guest guest]

Donna,

Welcome to MY world. See why I spend part of my days on these boards and

lists ? I do have other things that would be more pleasant to be doing.

But I believe patient education is the only way the doctors will ever learn

this CAN be done successful.

My doctors still doubt me. One and a half years in remission. BUT... I am

still setting an example for them to watch. I still always make a comment

about iodine. Now I need the next Graves' patient in their practice to do

the same. In time WE will be setting the example.

Because it is the cheapest treatment and insurance companies rule.

Doctors pay and job depend on the ins. co.

With RAI they then have you as a steady customer for life. The makers of

replacement hormone get part of your paycheck until you die.

Patients change ins. co. through life, and the same outfit that killed your

thyroid and saved money does not get saddled with the future medical bills.

NO proper research has ever been done on true lasting affects of RAI. If it

was done millions of people would be able to sue their doctors and everyone

involved.

NO proper research has ever been done on true remission rates with ATDs,

with ALL proper labs AND patient education... so the patient knows about

their triggers and antibodies.

Further compounded by a lack of common sense, when ALL medical doctors tell

the patient that asks... is there anything I can do myself to get better ?

They are always told nothing WE do makes any difference except take our

pills. They always say iodine content in food has no affect on our thyroid.

Much less clearly understand proper dose reduction and set points.

So what they SEE in their practice are a lot of sick people on ATDs not

getting better. This leads them to believe ATDs do not work well. If a

patient happens to figure stuff out on their own... the doctor will always

write it off as LUCK... at this point in time.

-Pam L - still searching for the one elusive proper remission study... I

shoot holes in all of them I have ever seen... if you stop to really think

through the variables they do not study. It could be done.

Gosh... I wonder why remission rates are so low in THIS country ?

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]

Oh, and let's not forget...the only way to purchase thyroid hormone is with

a scrip.

If you become too hard to treat ( demanding to feel well ) the doctor can

give you a SMALLER dose of replacement hormone and you will become more

submissive and more likely to do what he says.

-Pam L -

[Guest guest]

>>> jacksue7@... 06/19/03 20:46 PM >>>

Two doctors have told me RAI is the treatment they would choose if they were in

my position. I really think they believe that it's safe, easy and always has a

positive outcome. It's probably what they were taught in school.

Aileen

[Guest guest]

I keep wondering if I wrote this, Aileen. I have heard the same -- two out

of two docs (endo and GP) said this to me on Friday. I have to wonder if

they would say the same thing if they really were in our position.

I'm not going to consult with the third specialist, as he is not covered by

my insurance (so I wouldn't be able to continue with him anyway). From what

I have been hearing, it would simply cost me $450 to hear him say " you have

3 options...pick RAI. "

At 10:01 PM 6/19/2003 -0400, you wrote:

> >>> jacksue7@... 06/19/03 20:46 PM >>>

>Two doctors have told me RAI is the treatment they would choose if they

>were in my position. I really think they believe that it's safe, easy and

>always has a positive outcome. It's probably what they were taught in

>school.

> Aileen

[Guest guest]

Donna, while I was at my regular Dr's office this afternoon, I was skimming

through all my paperwork, (labs) and such waiting on the Dr. When he walked in,

he said, oh, reading results eh? What have you learned? lol. He's my PCP and

has a fairly good sense of humor, so I very curtly replied.....learning that not

all Endo's have a clue what they are doing.

He asked about the thyroid tests, and how I was doing....which I replied, still

gaining weight, tired of being fat, sassy, out of breath, and I'd love to have a

remission from this HyperT/Graves forever. In looking through all those notes,

I realized that the only reason they sent me for that uptake test in the

beginning was to get me ready for RAI. It stated so on the paperwork. (I just

recently got copies of those tests two days ago) Then I thought of the lovely

Dr who I went to next, after we changed insurance company's and he played some

game with me on the meds.....you can have them, then you can't have

them.....then the symptoms were back, and I was back on meds....it happened far

more times than I cared to rehash or to go through again.

But Dr #2 really astounded me when he said, if you'd just do the RAI, I can see

you monthly, instead of every two months? I still laugh when I think of that.

In the beginning I didn't understand that it wasn't my thyroid that was the

enemy, but the Graves which was. I'm not only older, but tad bit wiser now. I

am still undecided if these guys who practice Endocrinology are just looking for

the easier way out, cuz it's really not their problem they have to live

through.....and maybe in their minds they think or have been taught that it's

easier to handle hypoT. I have heard that so many times since the onset of this

disease in Nov 2001 and I've come to at least two conclusions on the entire

thing.

#1. It is true that in every graduating class, somebody has to be at the

bottom. (I know I had at least one dr who fits in this category.

#2. I am the most stubborn person I know, and that saved me from making the

rash decision to do RAI when it was suggested to me on my first and second

visits.

I just ordered Elaine's book today and I can't wait for it's arrival. There is

just so much to learn. I still get confused on a lot of this stuff, but at

least on these message boards I can get straight answers instead of one sided

answers that only benefit a Dr or a drug company. I personally think they all

get kick backs. lol

Sandy~Houston

Just curious and alittle angry

Hi all. I read all I can here and on the mediboard. I was curious as

to why in so many posts that Endo's want to give RAI, even when meds

seem to be working?

I get angry when I read how it seems some have to almost beg for

alternative treatment{meds, or whatever else}. Why do docs push so

hard for this? It is beginning to boggle my mind after reading so

much about this disease.

I'm not knocking this treatment by any means. I'm just so curious as

to why it's so hard not to be told you need it or why it's so popular

an option by Doctors?

Just wondering why.

Take care. Donna

[Guest guest]

Donna,

Another thing too, is that years ago the only treatment for thyroid disease

was SURGERY! It was considered extremely dangerous and I believe more than 1/2

of the people who has this surgery died from it..

When my mom had this surgery the first time in the 60's, she came thru

it..and I believe at that time it was " automatic " that people took the

radioactive

isotopes (I'm not 100% sure about this info). The isotopes were the liquid

form of the pill they use today and actually in some places they still use the

liquid form. Apparently most places don't use this liquid form anymore, unless

they have to because it became too dangerous for the medical staff because of

spillage.

Then came the RAI to abalate the thyroid...this was less costly and much

safer at THAT time! Also I don't believe they had ATD's at that time either

(I'm

not 100% sure of this one either, but I think so)

So I think many of the old time doctors just passed along what they were

taught...and the newer docs followed their mentors...unfortunately many doctors

don't keep up with the newer ways or new medical science and they like to stick

with what they know.

Pam, I too agree there just hasn't been any studies done on long term ATD

use...AND remission rates..I'm still waiting for those studies too.

I do have good news for the RAI...my breast surgeon I had in Nov...was

involved in inventing a radioactive filter for the RAI that filters out most of

the

radioactivity to almost zero..that enters the body. This filter is in use for

breast cancer patients now. Before, they needed to use the RAI to be able to

identify the lymph nodes and where they are prior to removal...

This filter was able to remove the Radioactive part and they were still able

to identify the lymph nodes on the imaging device..

I talked to him about this for the thyroid and he said that there were people

working on that..So hopefully someday, they won't need RAI anymore for ANY

imaging...with the science available today..the government debts, the over

crowded and understaffed hospitals....I think we all are going to see alot of

changes. All the things that they have known about for years and years...will

be

" suddenly " invented! I am already seeing things on the news!

Sandy, the only reason I was sent to the uptake test...twice! was to get me

ready for the RAI pill too! It backfired in their face! My nuclear

radiologist is SOOOO good and reccommended surgery, EVEN though this was his

private

practice and he lost money by this reccomendation!

lil deb

[Guest guest]

Hi everyone:

I actually have a doctor who does not like RAI as a

first choice. He lists it as last.

This is my Neuro Opthomologist...who has many patients

with TED.

Best,

Ron

> > >>> jacksue7@a... 06/19/03 20:46 PM >>>

> >Two doctors have told me RAI is the treatment they would choose if

they

> >were in my position. I really think they believe that it's safe,

easy and

> >always has a positive outcome. It's probably what they were taught in

> >school.

> > Aileen

>

>

>

[Guest guest]

Hi Donna,

I think Pam explained it well. But there are deeper roots. Most endos have

been trained to think that hypothryoidism is a non-disease. Most endos think we

exaggerate hypo symptoms. With the new focus on autoimmune disease, the tide

is slowly turning. But it will be some time before the main contingent

realizes the harm of the old ways, especially when the older endos are not about

to

say that they erred in recommending RAI. That would open the door to too many

lawsuits. Take care, Elaine