Re: NOT freaking out!!!! and news!!!

[Guest guest]

Well, this morning I started all the calls. Got some run around, from the

sugical nurse who was assigned to me...(she couldn't come to the phone, as

usual...etc.), (thanks to whoever said, " they don't take us serious half the

time because they always think we are panicing " ) I was so persistant to the

receptionist, nice, but firmly and calmly said, " this is NOT my thyroid

talking and I am NOT panicing, my thyroid levels are within normal range! "

Explained that " I want to speak to the surgeon, I have questions that ONLY he

can answer and have been refered to him for answers by the other parties

involved with my surgery scheduled for Tuesday and MUST speak to him today! "

Of course, that was impossible, etc. etc. So I calmly asked to speak to the

supervisor. All of a sudden, after being put on hold...for 30 seconds....The

nurse comes on. I re-explain what my request was!

Debra

(from the article)>>They felt with the study I had read, that this would

lead to tooo many lymph nodes being removed unnessarily and further studies

needed to be done.

I asked him did they look into the relation of the absorption of this

material into other parts of the body, especially the thyroid? He said,

" actually... " and then stupid me, cut him off......so I have no answer....

I stated to tell him, how many people with thyroid disease or autoimmune

disease will not use take the thyroid scan because of this RA I-125

material....because of autoimmunity and the release of stored autoantibodies

and just plain, radioactivity....

He said, if they are able to filter these particles down at least to only a

few, for now, until a better way to test for these things, the test would be

much safer than it is now, not only for lymph nodes but for other tests, if

they can prove it effective.

That is what I thought I was seeing in this abstract....why would they

filter?....the iodine is the absorption.....it is the radioactive material

that make the absorption show up.....and with all the new computer and high

imaging technology.....How much radioactive material is REALLY NEEDED!!! I

was happy to hear it was MY surgeon thinking in this manner.

He said they are still working on it...

Then I asked him if he had heard of the new release of that study about the

programed cell death and the gene. He had not, but was extremely interested,

I said I will email it to him.

DORIS....GET READY FOR THIS!!!

I told him about the theory of possibly DES being a CAUSE of autoimmunity and

its relation to gyn, and had he ever thought of that or heard of that.

As I started to explain it....He said I was loosing him, when I started to

get down to the nitty gritty (it is hard to explain quickly, there is soooo

much to it)......He started asking ME questions.....I explained about that

study where it is being proven to the third generation and all my study of

the estrogen/progestrone problems related to gyn and the cancer risks etc.

and the relationship to people with autoimmune disease, as all are symptoms

of both, and that I felt personally, a gene or set of genes were mutated

while the mothers carried the child while taking DES and so on, and the

environmental factors played a part, but were not the cause....and with this

new study....programed cell death.....and maybe if a few of you big guy

researchers got together with your ideas, we have studies, etc. put 2 + 2

together.....etc. etc.

He began to get excited throughout my talking, and then I could hear his

beeper going off and I said that I could email some links and we could talk

and I have alot of friends who research this also......he said that WE have

to talk more about this and that sounds good to him....he said we can make

arrangements for contact on this subject, on monday when I see him....I

said...no problem...But first, he said we have to take care of you! then we

can get to all of this, but we will make arragements to talk on Monday,

OK?....I said, ok....

So Monday....make arrangements to talk....but first, figure out what the deal

is for me!

So we have to start putting our links together...Mine are everywhere....

If we could get these big guys to even look at this stuff we know, I am sure

they would be surprised...

Like you said, Chris....I believe it will be this board that leads to a

cure....If we can get those big guys to work on it!!!

I will go find those links and get them posted them...I wanted to get this

info up...

Deb