Re: Interesting Survey

[Guest guest]

Seeing as I have TPO-Ab and am probably currently in a hypO phase (unless I

was simply overdosed -- my TSH is 4.3), this info makes me...SAD :-(

I do hope that it raises awareness, as was its intended purpose.

[Guest guest]

Oh ,

I never meant to make you SAD :-(

And to read this while you are temporarily hypo, will cause it to hit a bit

harder. ( though the kids line... Reality Sucks, runs through my head about

now )

This is the reason I always have a problem with those that continue telling

others that RAI and hypo can be just fine.

True... there must be some out there, and they certainly do not hang out

with the likes of us. :-)

But... it is a RISK that does not need to be taken.

And... there are NO quick fixes to thyroid problems.

There just are NOT.

You have learned so much in a short amount of time, and have also been

willing to help others . THAT is a wonderful trait. Most come, get what they

need, and leave.

Then... there are some of us, that for some reason have stayed and stayed.

For me... it is the time I had to roam all the boards, hyper AND hypo, to

carefully consider everything. I am a " in recovery " perfectionist.

During the time I haunted the boards, long before I ever posted anywhere (

used to be really shy, believe it or not ), I saw this over and over.

I also discovered, over time, how many of my acquaintances and friends had

thyroid issues. They all said the one pill a day is great, BUT... they all

list their other illnesses. They are all the same things I had read on the

hypo boards for years. AND... the same things the doctors told me were my

problems every time I was hypo on my ATDs.

The same symptoms that consistently go away every time my thyroid levels hit

MY set point !!!

Thus, I stay and stay.

There is no good reason for those of us that still have a functioning

thyroid, even with the whole list of antibodies, to give up. It is an

antibody problem. That is all.

And as women, our health affects our families so many ways, we must get all

of these Moms and Grandmoms back to health.

My Mother was a victim, and the damage she did to all of us mentally goes on

and on. Then we continue to influence others in our lives, using our past

emotional damage as part of how we interact. One thyroid then continues to

affect more and more people.

Take my family alone. My mom caused serious problems for all the kids and

the husband. These all then went on to damage all of our own families and

close relationships. Much damage that can never be undone.

It really is much bigger than some weight gain, hair loss, or just one more

hypochondriac woman. The endos that really do believe hypo is not a problem,

has never really studied the big picture, much less 'set points'. If they

had, they would be listening to their patients, and making the effort.

You have now seen me 'get my dander up', and will undoubtedly see it again.

Because those that continue to mislead new patients, will always be this

huge trigger for me.

This starts to show my " WHY. "

As I believe if we get to the root of it , right off the bat, there are huge

numbers of folks spared.

And you have now advanced your thyroid education greatly, because most of

us took years of study to see the same 'survey results'... in real life and

those that we have gotten to know on various boards over the years.

And the bright side for you should now be ...the fact that those TPOs will

not be destroying you thyroid, though this part right now is a tough pill to

chew.

-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]

At 10:54 PM 8/17/2003, you wrote:

>Oh ,

>

>I never meant to make you SAD :-(

I know. The reality of the idea that most with GD scares me. Aren't my

TPO-Ab still at work? (They were >70% when last tested.) I'm not really

sure if the meds decrease them like the TSI. Are we only in remission if

they are gone too? (A bit of confusion here.) From what I can tell, I

tested negative for TgAb, which I guess is a blessing.

>During the time I haunted the boards, long before I ever posted anywhere (

>used to be really shy, believe it or not )

NOT! ;-)

Thanks for writing to me. I'm sorry you and your family were so affected.

You do sound at peace these days, so that is good.

Just earlier today, I had been reflecting on my own family, wondering how

thyroid issues may have been responsible for " nuttiness " and various health

issues (mother's side).

We are fortunate to be armed with knowledge (however limited) and the

ability to advocate for ourselves. It is just overwhelming sometimes, on an

emotional level, to contemplate the negative impact that can occur. I can't

complain, as I have been fortunate to have had a rather easy time of it so

far...but the worry about what may lie ahead can be unnerving. Like " the

Ghost of Christmas future. " I realize that I have to take it one day at a

time and deal with what life brings.

Maybe I'll luck out and those TPO suckers will die, along with TSI. I'm

still trying to get Dr. Nuclear's words out of my head: " your thyroid will

not survive this disease. " Egads.

[Guest guest]

I must not wait a minute to send you this reply.

YES... The ATDs work on the TPOs !

Most do not have regular tests on these, so you do not see the subject much.

* Hypos ( Hashis) do not get antithyroid, immune surpressing drugs.

* After RAI patients do not get antibody tests.

See how this subject simply does not come up on a regular basis ?

But our wonderful Jody... the clinical trial of one... has a series of these

labs done. The PTU has lowered her TPO consistently.

Now she has many factors at work, being post RAI and multiple health

problems, so when reading her lab results, keep that in mind.

One time there the TPO zipped up. Turns out she was on the 'natural'

replacement thyroid hormone, and later on different hormone, the TPO went

back down.

She reported here on these labs for a long time, and perhaps a 'search' at

MediBoard, would uncover something easier than the search at Yahoo... which

is an exercise in frustration for me.

Easiest way to search for it would probably be to do the search on her

member number.

Thanks for both of your " personal replies " ... Hard to shorten that to make

it real clear. ;-)

There IS a really good life out here, once the dang thyroid gets put in it's

place.

And I am so fortunate to have learned many lessons in life, that many never

learn, and I most likely would have been too busy or self involved to notice

I relied on my looks mostly to get through, though the high IQ certainly

helped my survival... it was wasted for many years, and to finally be

normal " , is a very strange thing indeed. Though the undiagnosed Graves'

damage to my face and waist line, did force me to choose which path I would

follow.

I now continue learning many things I missed out on, and am enjoying every

second of it. So at 54 years old, I now have the chance to enjoy and

understand the way most are never blessed with. Graves' HAS been a good

thing for me. I could have continued on, and never known.

Though the first couple years are a real bear for many.

The learning curve can vary. :-)

Chin up .

You do have all the right ideas.

And there is no reason to fear ending up hypo.

Worst case... a tiny bit hypo from some damage before your diagnosis, really

is very easy to treat. That is why I am on my .025 of Synthroid. My thyroid

does make all those mysterious thyroid hormones they don't have numbers for

yet.

I do have to wait one hour in the morning to eat, after my pill, but not a

bad trade off IMHO.

You are so much younger and this may not have been going on for long.

Compare to 16 years of being told it was menopause. Good Grief !

Yes, the hypo right now affects the mind and emotions SO very much. But I

never could see the depth of it when I was there. As you come back, you will

see it too.

And this is going to teach you some things they can not put in the books.

What about a very personal , hand written journal, a very safe place...

write down how you really feel and think at this time, while your thyroid is

doing the thinking. As we do forget the fine details. Things that words are

hard to describe. Some I see only in my penmanship, or the pressure I used

on the pencil....choice of pens, pencils, squiggles and such.

Then later get this out for review. I believe it may surprise you how the

hypo thinking is so real at the time.

* If I ever perfect the fine art of inviability, I will need the name of

this horrid person that told you ___ " your thyroid will

not survive this disease. " Egads.___ :-D

-Pam L-

[Guest guest]

Thanks, Pam, for taking the time to write again. I hear you. And I will

read it again in the morning, as it is a lot to absorb and I am tired (bed

time!). Losing coherence.

Thanks for clarifying the TPO issue. Whew. I see now that I should monitor

for TPO-Ab regularly as well as the TSI. I suspect I may have had

subclinical hypO for quite a while, as I was always chilly (cold feet and

hands), menstrual irregularities since forever, elevated cholesterol, hair

loss (it used to be very thick when I was young), and even remember that I

lost the outer third of my eyebrows once. I have ordered back labs from my

GP, and will take a look (he thinks TSH 4.3 is " OK " ).

I will do a bit of writing and see if it shows anything. I wonder if it

will feel like " me, " if I have indeed been subclinical hypO all along.

Good night,

At 12:22 AM 8/18/2003, you wrote:

>I must not wait a minute to send you this reply.

>

>YES... The ATDs work on the TPOs !

>

>Most do not have regular tests on these, so you do not see the subject much.

>

>* Hypos ( Hashis) do not get antithyroid, immune surpressing drugs.

>* After RAI patients do not get antibody tests.

>See how this subject simply does not come up on a regular basis ?

[Guest guest]

> I'm the new one, Carolyn. I've just been diagnosed with GD and here

> are my test results:

> TSH = .002 T4 = 5.0

> I'm not on medication yet. Does anyone have a comment on these

> scores? What advice can you give me on treatment?

> Thx,

> Carolyn

Hi Carolyn. I just came back from a few days away and may have been too

quick on the trigger finger and deleted responses to you already. Here's

my $.02:

The first thing you need is clarity. This condition requires really

educating yourself. I would recommend getting the following tools: a

binder, for your labwork and articles, etc. you want to print and a

highlighter and pen, for highlighting, notes in margins, etc. of said

articles and posts from the group.

You need to learn the following

* what kind of bloodwork you need - TSH, hormones (T4 is an important

hormone to test, and should always be done in the free form, not the

total), antibodies

* your medication options and how to take the medication. Questions you

need answered include what are appropriate doses, how many times a day,

etc.

* lots and lots of terms - you may want to create your own glossary.

I think that the letter to the newly diagnosed includes excellent sites

for you to visit such as thyroid manager, Elaine 's articles, books,

etc. and how to find them.

You found a very good place. You may feel overwhelmed by all the info but

trust me on this: if i could learn as much as I have (not that you know

me but again, trust me) then so will you. The most important thing is, no

matter how bad you're feeling, and we've all been there to some degree,

don't consent to a permanent treatment such as RAI or even surgery, which

is by far the lesser of the two evils and a legitimate option under the

right circumstances. Even people who do well on RAI, and I pray they are

the overwhelming majority, express regret that the medical establishment

didn't fully inform them of all their options. ATDs (anti thyroid drugs)

will buy you time to research, and properly administered may well bring

you to remission.

Take care, Fay (in remission for 2 years after 14 months on

Tapazole/methimazole)

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