frustrated

[Guest guest]

I'm sure they summarize these things the way they want it to look! I'm on

NEJM e-mailing list, and get summaries of new articles, but I haven't been

able to make myself hand over the bucks to them to get the full article.

I'm sure it would be better if I could read the whole thing and come to my

own conclusions rather than having a doctor or researcher tell me what their

conclusions are! I do feel somewhat better after your explanation of the

study.

RE: Frustrated

>I checked out a summary of the article here:

> http://jama.ama-assn.org/issues/v280n4/abs/joc6995.html

<http://jama.ama-assn.org/issues/v280n4/abs/joc6995.html>

>< http://jama.ama-assn.org/issues/v280n4/abs/joc6995.html

<http://jama.ama-assn.org/issues/v280n4/abs/joc6995.html> >

>

>The summary, though, shows an increased risk of cancer mortality after

>treatment with ATDs, not RAI. The RAI showed a slight increase in thyroid

>cancer only, but they attributed that to the thyroid disease itself. Not

>really what I wanted to hear.

>

>Holly

>

>

>

>

[Guest guest]

>I'm sure they summarize these things the way they want it to look!

Exactly. I think I once read a book that was called something like, " How to

Lie with Statistics " . You can pretty much read anything you want into them.

>I'm sure it would be better if I could read the whole thing and come to my

>own conclusions rather than having a doctor or researcher tell me what

their

>conclusions are! I do feel somewhat better after your explanation of the

>study.

I'm glad you feel better...I didn't want anyone to panic after reading the

official summary!

[Guest guest]

>I'm sure they summarize these things the way they want it to look!

Exactly. I think I once read a book that was called something like, " How to

Lie with Statistics " . You can pretty much read anything you want into them.

>I'm sure it would be better if I could read the whole thing and come to my

>own conclusions rather than having a doctor or researcher tell me what

their

>conclusions are! I do feel somewhat better after your explanation of the

>study.

I'm glad you feel better...I didn't want anyone to panic after reading the

official summary!

[Guest guest]

Hi Terry-

I'm just catching up on my reading (out of bed for the 1st time in days-hope

that IVF worked) so I'm sorry I'm responding so late. I wrote 10 reasons " I

love not having a thyroid " 3 years ago and your email prompted me to repost

it. My thyroid continued dying for 6 years until it was completely dead. I

was guaranteed it wouldn't. The 1st 2 or 3 years weren't too bad. They

just kept me a little hypothyroid. I really started having trouble once it

was dead.

10 reasons why I love not having a thyroid:

1. I have lots of " private " time since I'm not up to socializing much.

2. I don't get pregnant (even when I try-it's good for the population

explosion).

3. Pain means nothing to me anymore.

4. No chance of that " scary " thyroid storm, however rare it is.

5. I depend upon doctors for my wellbeing (no matter how educated they are

about thyroid diseases) and not the frivolities of my body, however it was

intended to function (they don't know everything).

6. I can gain weight - no problem.

7. I forget. So if I don't want to remember something, it's gone. Of

course, it's gone when I do want to remember something too (a small

drawback).

8. My vision varies so I must see something others don't. At the very

least, it introduces variety into my life.

9. My fingers swell so I don't overuse them.

10. And when I have sleep apnea, I don't use too much oxygen. That's very

good for the environment.

So, there you go. At the top of my lists of lifelong regrets is RAI.

Take care,

Hi everyone,

I can't believe I'm still not able to access my email from here, but I

can't. Yahoo is taking its sweet time in fixing me up again I guess, despite

my fixing everything just the way they request that I do it. Anyway, I hope

that one of these emails will finally come through back to me, but if not I

can for now visit the archives.

I have thought about starting a little project, prompted by my doctor's yet

again pressing for RAI, and so many others whose doc's have done the same.

I'd like to title it " Top Ten Reasons Why I'll Never Have RAI " , and really

put together a succinct, compelling list that anybody who wants to, can

print out and bring to the doctors appointment. It needs to be a quick read,

cause the doctors won't look at anything much else I don't think. (don't

laugh, or maybe do, here).

I figure input from the members who HAVE had RAI is the quickest and most

effective way to get to the meat of the problems, but then, there may be

reasons we who have opted not to do it can add, as well. Maybe it will be a

top 20 list! I came up with 10 reasons myself, pretty quickly. I'm going to

put them down, but only as motivators to get the rest of you working on the

problem. If, of course, you think it's a good idea.

Here they are, but please, contribute better ones than mine!

1 I know what hypo feels like, and it¹s awful, even for a few days. I can¹t

imagine being condemned to experience it for longer

2 RAI is " killing the messenger " but not attacking the root cause of the

disease

3 After RAI the thyroid spends a good amount of time dying, releasing toxic

amounts of hormone during the process

4 There is no perfect replacement hormone available

5 Chance of TED increases dramatically

6 Nothing on earth will ever convince me that radiation at that level won¹t

eventually cause cancer

7 Don¹t know anyone who has had RAI that hasn¹t gained a lot of weight

8 Hyper is controllable over the long term with medicine and there¹s a

chance of remission

9 RAI is a permanent and irrevocable decision

10 Just about everyone I¹ve corresponded with that has had RAI regrets it

Terry

[Guest guest]

Hi Terry-

I'm just catching up on my reading (out of bed for the 1st time in days-hope

that IVF worked) so I'm sorry I'm responding so late. I wrote 10 reasons " I

love not having a thyroid " 3 years ago and your email prompted me to repost

it. My thyroid continued dying for 6 years until it was completely dead. I

was guaranteed it wouldn't. The 1st 2 or 3 years weren't too bad. They

just kept me a little hypothyroid. I really started having trouble once it

was dead.

10 reasons why I love not having a thyroid:

1. I have lots of " private " time since I'm not up to socializing much.

2. I don't get pregnant (even when I try-it's good for the population

explosion).

3. Pain means nothing to me anymore.

4. No chance of that " scary " thyroid storm, however rare it is.

5. I depend upon doctors for my wellbeing (no matter how educated they are

about thyroid diseases) and not the frivolities of my body, however it was

intended to function (they don't know everything).

6. I can gain weight - no problem.

7. I forget. So if I don't want to remember something, it's gone. Of

course, it's gone when I do want to remember something too (a small

drawback).

8. My vision varies so I must see something others don't. At the very

least, it introduces variety into my life.

9. My fingers swell so I don't overuse them.

10. And when I have sleep apnea, I don't use too much oxygen. That's very

good for the environment.

So, there you go. At the top of my lists of lifelong regrets is RAI.

Take care,

Hi everyone,

I can't believe I'm still not able to access my email from here, but I

can't. Yahoo is taking its sweet time in fixing me up again I guess, despite

my fixing everything just the way they request that I do it. Anyway, I hope

that one of these emails will finally come through back to me, but if not I

can for now visit the archives.

I have thought about starting a little project, prompted by my doctor's yet

again pressing for RAI, and so many others whose doc's have done the same.

I'd like to title it " Top Ten Reasons Why I'll Never Have RAI " , and really

put together a succinct, compelling list that anybody who wants to, can

print out and bring to the doctors appointment. It needs to be a quick read,

cause the doctors won't look at anything much else I don't think. (don't

laugh, or maybe do, here).

I figure input from the members who HAVE had RAI is the quickest and most

effective way to get to the meat of the problems, but then, there may be

reasons we who have opted not to do it can add, as well. Maybe it will be a

top 20 list! I came up with 10 reasons myself, pretty quickly. I'm going to

put them down, but only as motivators to get the rest of you working on the

problem. If, of course, you think it's a good idea.

Here they are, but please, contribute better ones than mine!

1 I know what hypo feels like, and it¹s awful, even for a few days. I can¹t

imagine being condemned to experience it for longer

2 RAI is " killing the messenger " but not attacking the root cause of the

disease

3 After RAI the thyroid spends a good amount of time dying, releasing toxic

amounts of hormone during the process

4 There is no perfect replacement hormone available

5 Chance of TED increases dramatically

6 Nothing on earth will ever convince me that radiation at that level won¹t

eventually cause cancer

7 Don¹t know anyone who has had RAI that hasn¹t gained a lot of weight

8 Hyper is controllable over the long term with medicine and there¹s a

chance of remission

9 RAI is a permanent and irrevocable decision

10 Just about everyone I¹ve corresponded with that has had RAI regrets it

Terry

[Guest guest]

Hi Terry-

I'm just catching up on my reading (out of bed for the 1st time in days-hope

that IVF worked) so I'm sorry I'm responding so late. I wrote 10 reasons " I

love not having a thyroid " 3 years ago and your email prompted me to repost

it. My thyroid continued dying for 6 years until it was completely dead. I

was guaranteed it wouldn't. The 1st 2 or 3 years weren't too bad. They

just kept me a little hypothyroid. I really started having trouble once it

was dead.

10 reasons why I love not having a thyroid:

1. I have lots of " private " time since I'm not up to socializing much.

2. I don't get pregnant (even when I try-it's good for the population

explosion).

3. Pain means nothing to me anymore.

4. No chance of that " scary " thyroid storm, however rare it is.

5. I depend upon doctors for my wellbeing (no matter how educated they are

about thyroid diseases) and not the frivolities of my body, however it was

intended to function (they don't know everything).

6. I can gain weight - no problem.

7. I forget. So if I don't want to remember something, it's gone. Of

course, it's gone when I do want to remember something too (a small

drawback).

8. My vision varies so I must see something others don't. At the very

least, it introduces variety into my life.

9. My fingers swell so I don't overuse them.

10. And when I have sleep apnea, I don't use too much oxygen. That's very

good for the environment.

So, there you go. At the top of my lists of lifelong regrets is RAI.

Take care,

Hi everyone,

I can't believe I'm still not able to access my email from here, but I

can't. Yahoo is taking its sweet time in fixing me up again I guess, despite

my fixing everything just the way they request that I do it. Anyway, I hope

that one of these emails will finally come through back to me, but if not I

can for now visit the archives.

I have thought about starting a little project, prompted by my doctor's yet

again pressing for RAI, and so many others whose doc's have done the same.

I'd like to title it " Top Ten Reasons Why I'll Never Have RAI " , and really

put together a succinct, compelling list that anybody who wants to, can

print out and bring to the doctors appointment. It needs to be a quick read,

cause the doctors won't look at anything much else I don't think. (don't

laugh, or maybe do, here).

I figure input from the members who HAVE had RAI is the quickest and most

effective way to get to the meat of the problems, but then, there may be

reasons we who have opted not to do it can add, as well. Maybe it will be a

top 20 list! I came up with 10 reasons myself, pretty quickly. I'm going to

put them down, but only as motivators to get the rest of you working on the

problem. If, of course, you think it's a good idea.

Here they are, but please, contribute better ones than mine!

1 I know what hypo feels like, and it¹s awful, even for a few days. I can¹t

imagine being condemned to experience it for longer

2 RAI is " killing the messenger " but not attacking the root cause of the

disease

3 After RAI the thyroid spends a good amount of time dying, releasing toxic

amounts of hormone during the process

4 There is no perfect replacement hormone available

5 Chance of TED increases dramatically

6 Nothing on earth will ever convince me that radiation at that level won¹t

eventually cause cancer

7 Don¹t know anyone who has had RAI that hasn¹t gained a lot of weight

8 Hyper is controllable over the long term with medicine and there¹s a

chance of remission

9 RAI is a permanent and irrevocable decision

10 Just about everyone I¹ve corresponded with that has had RAI regrets it

Terry

[Guest guest]

Hi Jody-

I came up with an argument for the doctor against RAI for my sister who just

found out she has a goiter with 2 nodules (so we don't know yet if its

Hashi's or Graves or both with maybe hot or cold nodules). Nodules are

pretty common though even in people with healthy thyroids. An enlarged

thyroid is not as common. Her TSH is still normal (0.91).

She's going to tell the endo that she knows most people do well after RAI

but a significant minority do not (at least 10% probably more-and all the

endos know it). And since I did so poorly after RAI and she has 1/2 of my

genes (so her chances of doing poorly are much higher than the general pop),

she's not going to risk it. There is no way any doctor will be able to

argue against that. Then the endo would probably switch to the risk of

" thyroid storm " or osteoporosis or risk of infection from taking ATDs. But

she knows all the arguments against the chances of those happening too.

Take care,

> Hi Terry,

> What wonderful ideas you have! The symptoms list has been invaluable for

> the new people, I now keep it on my desk top to send them directly.

>

> I think this idea is just as wonderful. I am thinking on what I would

like

> to see on it too. I know one of them would be

>

> It is a MYTH that hypO is easier to treat.

>

> And the one about graves is an immune system disease NOT a thyroid disease

> is also a must. As for any others, most will probably be the same as you

> have listed and what Elaine has done.

>

> I do have one suggestion though. If this is going to be used with

doctors,

> it is going to become another effort by us to train doctors into a

different

> mode of treating. I agree, to catch their eyes, the list must be short

and

> to the point...but...I think each point needs to be explained as shortly

as

> possible, so *maybe* having a second or second and third page attachment

to

> it with explanations they can't argue with would be a good idea. Even if

> they don't read those in front of patients, hopefully they will take the

> time and read it when we are out of sight. I think for many, reading our

> reasons would be like the 'curiosity killed the cat, satisfaction brought

it

> back' kind of thing.

>

> The danger with one liners only is that they can then argue every point

made

> on them with 2/3 sentences to refute everything we come up with. With

> longer explanations (2/3 sentences of our own) on a separate page would

stop

> them in their tracks.

>

> But this is just my take on it. I know that, even though my doctor does

not

> do RAI on anyone anymore, I would take it in to her to share with her

> colleagues anyhow

>

> I'd be happy to work on this with you, as if you really need my help

but

> if you do, let me know.

>

> Thank you so much for this idea, it is truly excellent! And Elaine...

maybe

> another graves book on some of the things we have in the archives, like

this

> list, the extended symptoms list, Do's and Don'ts for graves, for the eye

> disease...some simple ideas? Maybe that is really reaching on my part,

but

> I do love your books

> TTYL

> Jody

>

>

>

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>

>

>

> -------------------------------------

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intended to replace expert medical care.

> Please consult your doctor before changing or trying new treatments.

> ----------------------------------------

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>

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>

[Guest guest]

Hi Doris-

I have the article too. I have a scanner and could scan it for you but it

will tie up your computer for quite some time. If you don't mind the tie

up, I'd be happy to do it.

Take care,

> ,

> Hi, is there any way I could get a copy of that article that was in JAMA?

>

> Thanks,

> Doris

>

>

>

>

[Guest guest]

P.S. That way wouldn't have to worry about copying and mailing it.

It is a fairly long journal article as journal articles go.

[Guest guest]

P.S. That way wouldn't have to worry about copying and mailing it.

It is a fairly long journal article as journal articles go.

[Guest guest]

Hey Everybody,

I am becoming very frustrated with my current situation. I was recently put

on clomid. I have only taken it for one cycle. My ob/gyn gave me a chart

which said when to take clomid and when my greatest fertility would be. He

told me I could contintue with my ovulation prediction kit but that there

would be no need to do so.

This is the story. According to my ovulation prediction kit, I have not

ovulated yet. That does not match the dates my ob/gyn gave me on the chart.

According to that chart, I should have ovulated during the past six days. I

have to go in for a blood test next week to see if I am ovulated which will

let my doctor know if the clomid is working.

I am going to keep it up with the ovulation prediction kit as well. Tomorrow

morning, I will see if I am ovulating. I am getting pretty frustrated with

this. Has anyone else had this experience with clomid?

Sincerely frustrated,

Shoshannah