Re: Re: Statistics and math questions!?

[Guest guest]

Here are some numbers.....

15% of RAI patients experience worsening or developing TED, which is

transient in all but 5% (who need medical treatment for severe TED.)

Remission with ATDs in Japan is 60%, much higher than the 30% in the US,

because the doctors know how to use the meds as they only use RAI as a last

resort

or not at all....never on children or people of child bearing age.

33% of post RAI patients do not do well after treatment.

So statistically, 0.2-0.5% sounds pretty good to me.

Informed consent is what we are all about here...but we strive to put out

correct information.

[Guest guest]

Mirela,

By not well post RAI, I mean sick. TED, obesity, conversion problems, not

being stabilized on thyroid hormone replacement, unable to determine set point,

prolonging hypothyroid symptoms...that kind of thing.

I am so glad you asked for links! This should keep you busy for a while!

Let me know if you need any more....

<A HREF= " http://content.nejm.org/cgi/content/short/338/2/73 " >

http://content.nejm.org/cgi/content/short/338/2/73</A>

<A

HREF= " http://www.emedicine.com/oph/topic237.htm " >http://www.emedicine.com/oph/to\

pic237.htm</A>

<A

HREF= " http://edrv.endojournals.org/cgi/content/full/21/2/168#SEC7 " >http://edrv.e\

ndojournals.org/cgi/content/full/21/2/168#SEC7</A>

<A

HREF= " http://www.thyroidmanager.org/Chapter12/12-frame.htm " >http://www.thyroidma\

nager.org/Chapter12/12-frame.htm</A>

<A

HREF= " http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve & db=PubMed & list_\

uids=8768863 & dopt=Abstract " >http://content.nejm.org/cgi/content/abstract/326/26/\

1733

http://bmj.com/cgi/content/full/319/7202/68

http://bmj.com/cgi/content/full/319/7214/894

http://www.eje.org/eje/146/0457/1460457.pdf

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve & db=PubMed &

list_uids=8768863 & dopt=Abstract

http://www.suite101.com/articles.cfm/9630/1-20</A>

<A

HREF= " http://www.bbc.co.uk/dna/h2g2/A688241 " >http://www.bbc.co.uk/dna/h2g2/A6882\

41</A>

<A

HREF= " http://www.ama-assn.org/ama/pub/category/4608.html " >http://jcem.endojourna\

ls.org/cgi/content/full/86/6/2354

http://news.bbc.co.uk/2/hi/health/2386305.stm

http://www.racp.edu.au/anzjm/oct00oa1.htm

http://www.blackwell-synergy.com/servlet/useragent?func=synergy &

synergyAction=showAbstract & doi=10.1046/j.1365-2265.2002.01654.x

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=retrieve & db=pubmed &

list_uids=9459632 & dopt=Abstract

http://eduserv.hscer.washington.edu/bioethics/topics/consent.html#ques5

http://www.ama-assn.org/ama/pub/category/4608.html

</A>

[Guest guest]

Mirela,

If you want to know how some people are doing on ATDs, I am grateful to be

able to say that I am doing very well!! After only two months, I am down

from 4 pills a day of PTU to 1/4 a pill a day! I will see in two weeks how

I do at this low dose, and will adjust from there. Also eager to see my

antibody test results!

Thank G-d I didn't have my thyroid destroyed.

At 02:02 PM 8/28/2003, you wrote:

>After reading the posts of this group, it seems to me that many of the GD

>patients here who did not have RAI, are not too well , either. Please,

>feel free to correct me if I am wrong.

>

>Mirela

[Guest guest]

Mirela,

If you want to know how some people are doing on ATDs, I am grateful to be

able to say that I am doing very well!! After only two months, I am down

from 4 pills a day of PTU to 1/4 a pill a day! I will see in two weeks how

I do at this low dose, and will adjust from there. Also eager to see my

antibody test results!

Thank G-d I didn't have my thyroid destroyed.

At 02:02 PM 8/28/2003, you wrote:

>After reading the posts of this group, it seems to me that many of the GD

>patients here who did not have RAI, are not too well , either. Please,

>feel free to correct me if I am wrong.

>

>Mirela

[Guest guest]

Mirela wrote:

" After reading the posts of this group, it seems to me that many of the GD

patients here who did not have RAI, are not too well , either. Please, feel

free to correct me if I am wrong. "

Well, all right, I will tell you what I have observed from the people

posting on this list in the last 1.5 years that I have been reading.

New people post - they are either freaked out about diagnosis or are

struggling with a treatment decision. Or they have been going down the ATD

road for a few months or years with a doctor that is treating them

incorrectly and is causing them the ups and downs you mention. Or there are

the people who just had RAI because their doctors told them it was their

best (or only) choice, and they still don't feel well and need help. Or

there are those who had RAI and everything seemed to be going ok for the

past few years, but things are starting to go downhill and their doctors don

t have any answers for them.

So...

we help the decision makers find the answers they are looking for and help

them figure out how to handle their doctors (or find better ones) so they

are not pressured into a decision before they are ready to make one. These

people are usually feeling really bad... they've been sick for awhile and

finally have an answer to why they feel so bad... but they start to do

better pretty quickly once they start getting treatment.

then we help the people being treated incorrectly on ATDs to manage their

doctors to administer the right dose and to get the right blood tests on the

right schedule. These people start out feeling pretty bad but after a few

weeks to a few months, they've gotten a handle on what they need - from

their doctors and whatever else they can do to help themselves... and they

start to feel better and go on with their life - only checking back when a

blood test shows a jump and they need help figuring out what to do next -

usually the jump is in the right direction - meaning they are healing and

need a dose adjustment - they are heading toward remission.

and we help the RAI folks who are either still hyper and waiting to go hypo,

or are hypo and don't feel good and are looking for help. These people get

their support from people who have been there - how to get the most out of

their replacement hormone, what to do if they have conversion problems, how

to get a doctor to get and keep them out of hypOhell.

There you are, the people doing not so well. It is a support board after all

people come here because they are sick.

Of course, for the most part, the people that ARE doing well have gotten

back to life as usual. Some of us keep our eye on the boards to see if there

is someone that is calling us to help them - or if a specific issue that we

are expert in comes up. Otherwise you don't hear from a good number of folks

that have done well with treatment - be it ATDs OR RAI - we are feeling good

again so you don't see us.

And if you watch the boards for awhile you will see the pattern - mostly new

people come for help, they learn the ropes, they get their life back, they

help out on the board for awhile, they reach remission (if they chose ATDs

over RAI or surgery), then they go back to their life full time - maybe

popping by once in awhile to give an update, share their success stories,

checking in to see if a cure for this disease has been discovered yet,

whatever.

Then there are those folks who were among the 30%+ who didn't get lucky with

RAI - who stick around to warn people of the dangers that were not told to

them before they let their doctors kill their thyroids. Those are the people

who seem to be struggling the most on this board - they either have

fertility issues, or conversion issues, or TED really bad... a new diagnosis

of fybromyalgia, or they've gained 100 extra pounds and can't loose it even

if they don't eat a thing... or whatever. They are the ones that have the

hard time finding what it takes to feel better.

The people struggling on ATDs figure it out withing a couple of months...

the people struggling with RAI gone bad... or suffering at the hand of an

incompetent doctor - they seem to take years looking for something that will

help them.

Pam B.

In remission after one year of alt med.

[Guest guest]

,

I too am so glad to hear of your great progress! It was just a short time

ago that you were a newbie, looking for help here and at Atomic Women. Now here

you are, responding well to ATD's, and helping newbies as you have done your

homework, and learned much in a short period of time!

Keep up the good work!

God bless,

[Guest guest]

At 11:17 PM 8/28/2003, you wrote:

>,

>

>That is wonderful! I am so happy for you!

Thank you, AJ! Based on last labs, I just reduced from 25mg PTU to 12.5

(OK'd by both the GP and the endo), so I don't know if I'll hold there.

Feel a little hyper today, but could just be adjusting to the decrease. I

will see how labs look in 2 weeks.

I didn't expect to be reducing so quickly. My endo would still have had me

on 150mg, until mid-Sept! ( " Come back in two months... " ) Although he did

caution me to watch for hypO symptoms, I'm glad I didn't sit back and wait

(I went hypO so fast, perhaps I didn't get a chance to really feel it); I

got labs done at the GP and at the gyn. My GP agreed to test me as needed,

so I let them know when I want to come in and what tests to run.

The reason I had to reduce so quickly is that my TSH went from .04 on 7/10

to 5.27 on 7/23 (FT3 and FT4 were low normal on 7/10, and didn't get them

on 7/23, as the gyn's office screwed up the request). This was quite a

surprise. I told my endo about the test results, and he said " drop to 50 "

(from 150). I tapered over the course of 5 days, even tho he told me to

drop abruptly. He has a habit of extremes, I think (overdosing, yanking me

off when I reported a rash, drastic reduction). Anyway, it has been a

steady decrease of the dose ever since. I may have to go back up to 25,

which would be fine. I think I might still be coming up from an overdose.

Who knows. Will find out more with thyroid and antibody test results, in a

few weeks (approaching the 3-month mark).

Also, I started out mild hyperT, so perhaps the reason for the big

reduction is probably that I was started on too high of a dose for what I

needed. My heart palpitations disappeared with the first 50mg of PTU! That

was unexpected. I also have had 5 NMT sessions, so that might be helping.

And I think the GD was triggered by excess iodine (I was taking a

supplement for a short time with 150 mcg iodine, and noticed shortness of

breath). The fact that I went off the b/c pill last fall and had a contrast

CT scan (tho I think they said there was no iodine in it) may have

contributed as well. I have been eating more chicken (I believe my diet was

protein deficient, as I avoid meat, and still don't eat red meat), nuts,

and taking various supplements, and avoiding iodine.

Perhaps this is more than you wanted to know!

Good luck to you with your doc visit, AJ. Let us know how it goes.

[Guest guest]

Thank you so much, . You have been a great help to me, as well as to so

many others. These groups are truly great.

On this happy note, I will get me to bed zzzzzzzzzzzzzzzzzzz.

Have a wonderful night,

At 01:26 AM 8/29/2003, you wrote:

>,

>

>I too am so glad to hear of your great progress! It was just a short time

>ago that you were a newbie, looking for help here and at Atomic

>Women. Now here

>you are, responding well to ATD's, and helping newbies as you have done your

>homework, and learned much in a short period of time!

>

>Keep up the good work!

>

>God bless,

>

[Guest guest]

Hi AJ,

Rather than be discouraged, try to be confident. Confident in yourself and

what you know. You know that your doctor using the TSH for ATD dosage is

WRONG, WRONG, WRONG. Did I say wrong? Yes, I did.

Looks like you're going to have to do some fancy footwork, and stick to

your guns. Remember, it is YOUR body. Don't let a doc throw you into hypO

when you know better. I don't know what hypO symptoms she is " looking for, "

and she shouldn't be looking for any. No reason for you to go hypO, and

good reasons why you shouldn't.

My GP is better than my endo for my purposes most of the time. I use my GP

as primary line of assistance, and " check in " with the endo because my GP

feels a lack of confidence in himself to manage my care solo (and he's

right, he's no expert, but the endo is so laissez faire that I am basically

driving treatment). Anyway, I would fight to keep my labs looking good. So

if you don't find satisfaction with the endo, you can maybe get better

results with a GP, especially if they have a clue.

You know your TSH is suppressed by the presence of TSI. Why on earth would

she insist on you plunging into a pit in order to get that particular lab

value to look pretty. Makes no sense, right? The only way that value will

rise properly is if the TSI are gone (of course it can rise if you have

blocking antibodies or Hashi's, but we aren't talking about that), and

being hypO increases antibody production from what I hear.

I have instigated every dose reduction. I say, " look at that FT4, what do

you think about me reducing to 25mg? " And they say, OK. True, I have the

advantage of having a high TSH (I may actually be in a hypO phase).

Nevertheless, the same rules apply to you: go by the FT3 and FT4.

So if you are recently on ATDs, and are now hitting a point at which the

previous excess stored hormone is being used up, then you will want to

monitor more closely, and drop your dosage in a gentle but not too slow

manner. Sort of like landing a plane. I would suggest that you get labs

done more frequently during such a time, maybe every 2-3 weeks, until you

find you are stabilizing. This is an exercise in fine tuning. Of course, I

am just suggesting based on my experience and what I've gleaned by reading,

and you need to use your own judgement when it comes to your particular

situation. From what you're saying, it sounds like you think you are

decreasing too slowly. Remember, if you decrease the dose too much, you can

always increase. Shouldn't be a problem, I think, if you are getting labs

frequently as you are.

Best wishes,

At 11:50 PM 8/30/2003, you wrote:

>She wants my TSH to rise to " Normal " . I am really

>scared of going very hypO. I am also very discouraged

>that she insists on using the TSH for ATD dosage. I

>have an article from a medical journal to check and

>copy.