Re: You all were right - disappointed in doc

[Guest guest]

Amy and Jody - the book is " Living Well with Hypothyroidism " - I just got it

from the library (mostly for my mom, but out of curiosity myself, too).

I'll let you know how it is!

RE: You all were right - disappointed in doc

>Hi Amy,

>How are you doing and feeling? Still on bedrest?

>

> Shomon has a good book on living with hypothyroidism, but I can't

>remember the exact title. Elaine knows it I think.

>

>I agree with you, I hate the TSH!

>

>Hope all is well with you, take care,

>Jody

>

>

>

>_________________________________________________________________

>Join the world’s largest e-mail service with MSN Hotmail.

>http://www.hotmail.com

>

>

>

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

>The Graves' list is intended for informational purposes only and is not

intended to replace expert medical care.

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

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

> DISCLAIMER

>

>Advertisments placed on this yahoo groups list does not have the

endorsement of

>the listowner. I have no input as to what ads are attached to emails.

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

-----------

>

>

[Guest guest]

Amy and Jody - the book is " Living Well with Hypothyroidism " - I just got it

from the library (mostly for my mom, but out of curiosity myself, too).

I'll let you know how it is!

RE: You all were right - disappointed in doc

>Hi Amy,

>How are you doing and feeling? Still on bedrest?

>

> Shomon has a good book on living with hypothyroidism, but I can't

>remember the exact title. Elaine knows it I think.

>

>I agree with you, I hate the TSH!

>

>Hope all is well with you, take care,

>Jody

>

>

>

>_________________________________________________________________

>Join the world’s largest e-mail service with MSN Hotmail.

>http://www.hotmail.com

>

>

>

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

>The Graves' list is intended for informational purposes only and is not

intended to replace expert medical care.

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

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

> DISCLAIMER

>

>Advertisments placed on this yahoo groups list does not have the

endorsement of

>the listowner. I have no input as to what ads are attached to emails.

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

-----------

>

>

[Guest guest]

Amy and Jody - the book is " Living Well with Hypothyroidism " - I just got it

from the library (mostly for my mom, but out of curiosity myself, too).

I'll let you know how it is!

RE: You all were right - disappointed in doc

>Hi Amy,

>How are you doing and feeling? Still on bedrest?

>

> Shomon has a good book on living with hypothyroidism, but I can't

>remember the exact title. Elaine knows it I think.

>

>I agree with you, I hate the TSH!

>

>Hope all is well with you, take care,

>Jody

>

>

>

>_________________________________________________________________

>Join the world’s largest e-mail service with MSN Hotmail.

>http://www.hotmail.com

>

>

>

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

>The Graves' list is intended for informational purposes only and is not

intended to replace expert medical care.

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

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

> DISCLAIMER

>

>Advertisments placed on this yahoo groups list does not have the

endorsement of

>the listowner. I have no input as to what ads are attached to emails.

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

-----------

>

>

[Guest guest]

Hi Pam -

Thanks for all the positive comments. First of all, I don't think you should

_ever_ have to feel afraid to post a result because people won't believe you

aren't feeling good just because it's in a " normal " range. I think there's

been enough discussion here of the individualness of what is " normal " that

no one would question you if you said you still didn't feel right! When I

got my results, I thought I was a little nuts to feel kind of " hypo " with a

FT4 of .85 (not that much higher than yours). I definitely feel more hypo

symptoms than hyper! I don't necessarily feel bad, but I do get a tired

earlier than I usually do, definitely colder (my basal body temp is 97.5 -

97.7), and I've gained 3 lbs. (doesn't seem like a lot, but my non-pregnancy

weight, with the exception of the weight I lost while hyper, has been the

same for 10 years). I told Terry that Elaine had commented to me before that

the body can reflect changes from a high T4 level to a more normal T4 like a

change to actual hypo. If the body was used to a T4 at a high level and it

went down to a lower normal level, the body can " feel " like it's hypo. I

thought this made a lot of sense and may be able to explain what you're

feeling and/or it may be that you are going hypo. I worry about this same

thing happening myself. My FT4 doesn't have far to go before it's below

normal. And we already found out about how my doc won't do anything about

that!

As for a naturopath, I saw one (the _only_ one in my area) and he admitted

he didn't know much about thyroid diseases and didn't think he could really

help me. (I appreciated his honesty.) There's supposedly a Chinese medicine

doc about 1/2 hour from me (same town as the only endos), but I don't know

enough it to know if he could do anything for me. I'll be interested in the

name of that book when you get it - sounds fascinating! I'm going to have to

try and find some bugleweed tincture here (not a whole lot of places around

here to get that sort of thing), but maybe I'll get lucky. Does the tinctur

e have a very high alcohol content? I really have a low tolerance for

alcohol (and that was before the GD!)

Hope you feel better with the bugleweed than the PTU - also hope your FT4

doesn't go down any more, but if it does, you'll have to let me know what

your doc says. Just for curiosity, what is your TSH now? Is it " normal " ?

:-)

Re: You all were right - disappointed in doc

>Hi ,

>

>You said:

>For all you on ATDs, Pam I think in particular mentioned that while you

were

>on ATDs, your FT4 did go low and your TSH was still low. Did you in fact

>FEEL hypo in that case? I got the impression that the FT4 levels did

>accurately reflect whether people felt hypo, but this doctor makes me think

>that isn't so! And I know there were so many of you that your TSH did take

a

>long to time increase on ATDs.

>

>At this point and time I am more confused than before. My TSH stayed

suppressed over 3 yr.

>Yes, this in no problem. But I vary much in the way I feel at different FT4

levels, and

>after this last scare with the doc threatening me with switching to Tap

because of the

>pain, I have been working out my own little reduction schedule in my PTU.

All the while

>getting some lab work. But as I pay for everything myself, I do not have as

many numbers

>to work with as some of you.

>

>So now I am starting to wonder if my problem all along was the amount of

PTU making me

>hypo combined with the PTU itself that caused so much pain.

>For example, back some time ago, I felt so hypo,among other things, I hurt

too bad to turn

>over in my bed, and had no desire to continue living ( thank God for

thyroid boards ).

>This was at a FT4 of .78 on a scale of .71 to 1.85. When the doctor

examined me, he did

>that thing where you hold your hands together with your elbows out, and he

pushes down on

>your elbows to check your strength. It hurt so bad, I folded like a deck of

cards and

>moaned against my will. He said..you need to get some exersize....like that

was the

>problem. I am still mad, but I keep thinking...why did he not think this

was normal for

>being low on T4 ??? I see people all the time that are sub clinical hypo

and do not have

>this pain.

>

>And to be honest, I have not posted this number here, for fear that no one

would believe I

>was really sick. So now I come clean in an effort to not only understand

more, but to let

>you know of my past ( and present ) confusion, and let you know I think it

is only the PTU

>causing the problem. I do not think you should worry about a lower T test

at all. You

>would have your body doing things the way it knows to heal and not have a

drug confusing

>things.

>

>And now the confirmation from those answering your post. It seems your

question has helped

>me. :-) It must be the PTU and not the hypo part.

>

>How do others feel at .78 ? I always read we feel better at the higher end

of the range,

>so had just assumed this was the problem.

>

>It certainly seems you are on the right path . Good job !

>

>-Pam- who is seeing your wisdom more everyday

>

>

>

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

>The Graves' list is intended for informational purposes only and is not

intended to replace expert medical care.

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

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

> DISCLAIMER

>

>Advertisments placed on this yahoo groups list does not have the

endorsement of

>the listowner. I have no input as to what ads are attached to emails.

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

-----------

>

>

[Guest guest]

Hi Pam -

Thanks for all the positive comments. First of all, I don't think you should

_ever_ have to feel afraid to post a result because people won't believe you

aren't feeling good just because it's in a " normal " range. I think there's

been enough discussion here of the individualness of what is " normal " that

no one would question you if you said you still didn't feel right! When I

got my results, I thought I was a little nuts to feel kind of " hypo " with a

FT4 of .85 (not that much higher than yours). I definitely feel more hypo

symptoms than hyper! I don't necessarily feel bad, but I do get a tired

earlier than I usually do, definitely colder (my basal body temp is 97.5 -

97.7), and I've gained 3 lbs. (doesn't seem like a lot, but my non-pregnancy

weight, with the exception of the weight I lost while hyper, has been the

same for 10 years). I told Terry that Elaine had commented to me before that

the body can reflect changes from a high T4 level to a more normal T4 like a

change to actual hypo. If the body was used to a T4 at a high level and it

went down to a lower normal level, the body can " feel " like it's hypo. I

thought this made a lot of sense and may be able to explain what you're

feeling and/or it may be that you are going hypo. I worry about this same

thing happening myself. My FT4 doesn't have far to go before it's below

normal. And we already found out about how my doc won't do anything about

that!

As for a naturopath, I saw one (the _only_ one in my area) and he admitted

he didn't know much about thyroid diseases and didn't think he could really

help me. (I appreciated his honesty.) There's supposedly a Chinese medicine

doc about 1/2 hour from me (same town as the only endos), but I don't know

enough it to know if he could do anything for me. I'll be interested in the

name of that book when you get it - sounds fascinating! I'm going to have to

try and find some bugleweed tincture here (not a whole lot of places around

here to get that sort of thing), but maybe I'll get lucky. Does the tinctur

e have a very high alcohol content? I really have a low tolerance for

alcohol (and that was before the GD!)

Hope you feel better with the bugleweed than the PTU - also hope your FT4

doesn't go down any more, but if it does, you'll have to let me know what

your doc says. Just for curiosity, what is your TSH now? Is it " normal " ?

:-)

Re: You all were right - disappointed in doc

>Hi ,

>

>You said:

>For all you on ATDs, Pam I think in particular mentioned that while you

were

>on ATDs, your FT4 did go low and your TSH was still low. Did you in fact

>FEEL hypo in that case? I got the impression that the FT4 levels did

>accurately reflect whether people felt hypo, but this doctor makes me think

>that isn't so! And I know there were so many of you that your TSH did take

a

>long to time increase on ATDs.

>

>At this point and time I am more confused than before. My TSH stayed

suppressed over 3 yr.

>Yes, this in no problem. But I vary much in the way I feel at different FT4

levels, and

>after this last scare with the doc threatening me with switching to Tap

because of the

>pain, I have been working out my own little reduction schedule in my PTU.

All the while

>getting some lab work. But as I pay for everything myself, I do not have as

many numbers

>to work with as some of you.

>

>So now I am starting to wonder if my problem all along was the amount of

PTU making me

>hypo combined with the PTU itself that caused so much pain.

>For example, back some time ago, I felt so hypo,among other things, I hurt

too bad to turn

>over in my bed, and had no desire to continue living ( thank God for

thyroid boards ).

>This was at a FT4 of .78 on a scale of .71 to 1.85. When the doctor

examined me, he did

>that thing where you hold your hands together with your elbows out, and he

pushes down on

>your elbows to check your strength. It hurt so bad, I folded like a deck of

cards and

>moaned against my will. He said..you need to get some exersize....like that

was the

>problem. I am still mad, but I keep thinking...why did he not think this

was normal for

>being low on T4 ??? I see people all the time that are sub clinical hypo

and do not have

>this pain.

>

>And to be honest, I have not posted this number here, for fear that no one

would believe I

>was really sick. So now I come clean in an effort to not only understand

more, but to let

>you know of my past ( and present ) confusion, and let you know I think it

is only the PTU

>causing the problem. I do not think you should worry about a lower T test

at all. You

>would have your body doing things the way it knows to heal and not have a

drug confusing

>things.

>

>And now the confirmation from those answering your post. It seems your

question has helped

>me. :-) It must be the PTU and not the hypo part.

>

>How do others feel at .78 ? I always read we feel better at the higher end

of the range,

>so had just assumed this was the problem.

>

>It certainly seems you are on the right path . Good job !

>

>-Pam- who is seeing your wisdom more everyday

>

>

>

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

>The Graves' list is intended for informational purposes only and is not

intended to replace expert medical care.

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

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

> DISCLAIMER

>

>Advertisments placed on this yahoo groups list does not have the

endorsement of

>the listowner. I have no input as to what ads are attached to emails.

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

-----------

>

>

[Guest guest]

Hi Amy,

Don't forget we are here for your support too! I miss your posts in group

and will look forward to you not forgetting us and keeping us up to date and

counting down with us until your big day!

Take care,

Jody

_________________________________________________________________

Send and receive Hotmail on your mobile device: http://mobile.msn.com

[Guest guest]

Hi Amy,

Don't forget we are here for your support too! I miss your posts in group

and will look forward to you not forgetting us and keeping us up to date and

counting down with us until your big day!

Take care,

Jody

_________________________________________________________________

Send and receive Hotmail on your mobile device: http://mobile.msn.com

[Guest guest]

Thats the one I just got for my mom! When she is done I'm going to read it

I was slightly hypo a while back but not enough for treatment of course

Bed Rest SUCKS I have learned that when the baby is low I have to lay

down more but when he is high I can sit up more. My cross stitch is coming

along nicely <VBG> I actually started looking online for jobs to see if I

can do something from home. I do computer stuff if anyone sees anything

I had some bleeding yesterday but its from a polyp. The dr debated removing

it but decided not to. So, I can probably expect it to cause slight

spotting in the future. Some days I do great - others I think i'm losing my

mind There are some great bed rest support sites out there.

Thanks for asking

Amy

>

>

[Guest guest]

Thats the one I just got for my mom! When she is done I'm going to read it

I was slightly hypo a while back but not enough for treatment of course

Bed Rest SUCKS I have learned that when the baby is low I have to lay

down more but when he is high I can sit up more. My cross stitch is coming

along nicely <VBG> I actually started looking online for jobs to see if I

can do something from home. I do computer stuff if anyone sees anything

I had some bleeding yesterday but its from a polyp. The dr debated removing

it but decided not to. So, I can probably expect it to cause slight

spotting in the future. Some days I do great - others I think i'm losing my

mind There are some great bed rest support sites out there.

Thanks for asking

Amy

>

>

[Guest guest]

You are so sweet You should get the MVP award or something LOL

Amy

RE: You all were right - disappointed in doc

Hi Amy,

Don't forget we are here for your support too! I miss your posts in group

and will look forward to you not forgetting us and keeping us up to date

and

counting down with us until your big day!

Take care,

Jody

_________________________________________________________________

Send and receive Hotmail on your mobile device: http://mobile.msn.com

[Guest guest]

You are so sweet You should get the MVP award or something LOL

Amy

RE: You all were right - disappointed in doc

Hi Amy,

Don't forget we are here for your support too! I miss your posts in group

and will look forward to you not forgetting us and keeping us up to date

and

counting down with us until your big day!

Take care,

Jody

_________________________________________________________________

Send and receive Hotmail on your mobile device: http://mobile.msn.com

[Guest guest]

You are so sweet You should get the MVP award or something LOL

Amy

RE: You all were right - disappointed in doc

Hi Amy,

Don't forget we are here for your support too! I miss your posts in group

and will look forward to you not forgetting us and keeping us up to date

and

counting down with us until your big day!

Take care,

Jody

_________________________________________________________________

Send and receive Hotmail on your mobile device: http://mobile.msn.com

[Guest guest]

LOL...and you are very very quick!

I know some good free game sites if you want them They might help pass

the time for you. Can you be up on the computer for very long at a time?

Jody

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp.

[Guest guest]

LOL...and you are very very quick!

I know some good free game sites if you want them They might help pass

the time for you. Can you be up on the computer for very long at a time?

Jody

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp.

[Guest guest]

LOL...and you are very very quick!

I know some good free game sites if you want them They might help pass

the time for you. Can you be up on the computer for very long at a time?

Jody

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp.

[Guest guest]

Its a laptop - I'd DIE without it. I can lay on my side and use it. I

haven't gotten into games too much yet, but there is still 4 months to go -

so send them along LOL

Amy

RE: You all were right - disappointed in doc

LOL...and you are very very quick!

I know some good free game sites if you want them They might help pass

the time for you. Can you be up on the computer for very long at a time?

Jody

_________________________________________________________________

Get your FREE download of MSN Explorer at

http://explorer.msn.com/intl.asp.

[Guest guest]

Its a laptop - I'd DIE without it. I can lay on my side and use it. I

haven't gotten into games too much yet, but there is still 4 months to go -

so send them along LOL

Amy

RE: You all were right - disappointed in doc

LOL...and you are very very quick!

I know some good free game sites if you want them They might help pass

the time for you. Can you be up on the computer for very long at a time?

Jody

_________________________________________________________________

Get your FREE download of MSN Explorer at

http://explorer.msn.com/intl.asp.

[Guest guest]

Its a laptop - I'd DIE without it. I can lay on my side and use it. I

haven't gotten into games too much yet, but there is still 4 months to go -

so send them along LOL

Amy

RE: You all were right - disappointed in doc

LOL...and you are very very quick!

I know some good free game sites if you want them They might help pass

the time for you. Can you be up on the computer for very long at a time?

Jody

_________________________________________________________________

Get your FREE download of MSN Explorer at

http://explorer.msn.com/intl.asp.

[Guest guest]

-Dear :

I really feel for you too, just went through your EXACT experience

just exactly one week ago (See my message #11316 and responses) when

my doc called about lab results. I have been on PTU for only 4 months

since my initial GD diagnosis and during the visit he was saying how

he thinks my labs will finally show my tsh going up by now. In my

head I remembered reading and seeing posts about how tsh takes a long

time and not to rely on this tests during atd's but I just didn't

really trust my memory at the moment. Then the call comes...all my

labs FT4, FT3, normal (as they have been for 3 1/2 months now) but

tsh still 0.01. I feel fine but he is all concerned and even

consulted with other docs about this. What's so sad is here I am in

NYC at Columibia Med. center and here are 3 doctors all concerned

about tsh not rising after only 4 months !!?? This is just so

depressing that docs all over this country are just so clueless. I am

in the process of gathering articles and literature to mail him

regarding the tsh levels so he will hopefully be more patient. I just

wanted to say I sympathize with your situation, I was all bummed out

too thinking, geez I would hate to have to go through the process of

finding another doc (and I do like this guy he spends alot of time

with me and is caring) since he obviously does not know alot about

this disease !! Keep your chin up.

-- In graves_support@y..., " L. Buck " <mlbuck@q...> wrote:

> Sigh, well I am now officially joining the ranks of those

disappointed and

> discouraged by their doctors. I was trying not to be pessimistic

and giving

> my doc the benefit of the doubt, but and all you others who

warned me

> were right on target!

>

> Doc wanted to discuss my latest lab results (where my FT4 and FT3

were

> normal, TSI were in normal range, but TSH was still .03) Apparently

all he

> cared about was that the TSH was still .03. He recommended that I

do RAI.

> Said that my thyroid is still hyperfunctioning and that most women

in my

> situation (why particularly did he say women I wondered) would have

had the

> RAI by now. Geez! I was just diagnosed 6 months ago, and my FT4 was

only

> elevated for 3 of those months, and even the TSH has only been low

for less

> than a year.

>

> He was concerned that my TSH was still too low and I pointed out

that

> perhaps it just hasn't had enough time to come back up yet since my

FT4 has

> only been coming down for the last 4 months and said that I'd read

that it

> can take TSH 18 months to increase. (Apparently my doc needs to

read your

> article about TSH on Suite 101, Elaine.) He then argued that it

doesn't take

> that long because the TSH is a much more sensitive measurement of

thyroid

> function. True, I said, but it can take time for the pituitary to

respond to

> the changes. His argument for TSH not taking that long to respond

was that

> when you're hypo and you decrease the amount of replacement T4

you're

> taking, you will see an increase in TSH in about 4 weeks. Sure, I

accept

> this as being true, but didn't know the specific mechanism for why

hypers'

> TSH takes longer to respond, and found it pointless to argue since

he was so

> firm in his convictions.

>

> I asked what would be the point of having RAI at this point in

time, since

> my FT4 and FT3 are normal and my TSI have gone down? If I had RAI,

my TSI

> would most likely increase and I would surely become hypo. He asked

why I

> thought my TSI would increase and I explained about the RAI

initially making

> hyper worse from the blasting effect and elevating the TSI levels

and

> possibly developing GO. He said, " Oh, that (the TSI becoming

elevated)

> rarely ever happens! "

>

> He also refused to even consider the possibility that I may become

hypO or

> may also have Hashimoto's antibodies. I suggested that it wouldn't

be too

> unreasonable to believe since my mother has Hashimoto's. He said

that

> Hashimoto's was very rare and thyroid diseases aren't often

familial. OK,

> now I can recognize this as total BS! My mom's family has a very

long line

> of thyroid disease, both hyper and hypo, autoimmune and not! I

completely

> lost any credibility I had for him at that junction. He also said

it was

> very unlikely that I would have TSH receptor blocking antibodies

after I

> suggested that. (Yeah, buddy, but I'm already a statistical

anomaly).

>

> Now, to his credit (what little is left), his is still willing to

have my

> labwork checked every 3 months and monitor. I posed a hypothetical

question

> as to what he would think if next time I had my labs done in 3

months if my

> FT4 was BELOW normal (currently it's 0.85 in a range of 0.71 -

1.85). He

> asked what hypothetically my TSH would be and I suggested that it

would

> still be below normal range (because I don't think it's going to go

up

> _that_ much in 3 months!). I was wondering if he would consider the

> possibility that I had Hashi's if that occurred, but he said if my

TSH was

> still below normal even if the FT4 was below normal he would

consider me

> hyperthyroid. So now I have no idea what I will do now if that does

in fact

> happen. (Yes, I like to worry about all my possibilities, but this

one

> doesn't seem too unreasonable the way I'm going.)

>

> For all you on ATDs, Pam I think in particular mentioned that while

you were

> on ATDs, your FT4 did go low and your TSH was still low. Did you in

fact

> FEEL hypo in that case? I got the impression that the FT4 levels did

> accurately reflect whether people felt hypo, but this doctor makes

me think

> that isn't so! And I know there were so many of you that your TSH

did take a

> long to time increase on ATDs.

>

> , what exactly happened when you went hypo after being

diagnosed with GD

> and going into spontaneous remission? Did your doctors have a

difficult time

> believing it? How and when did they consider the possibility that

you might

> have had GD and HT both? We can certainly take this off-line if

it's you

> don't think it's pertinent to the group as a whole.

>

> Man, just when I was feeling so happy about my new lab results! I'm

a bit

> disillusioned now. I can really understand how easily people are

pushed into

> RAI now. I was so calm and non-threatening, I was just asking

questions

> backed up by facts I had read. I really hate when doctors get so

defensive

> when you question their recommendations. I feel almost as though I

have done

> something wrong by becoming more informed about my disease.

>

> Sorry to be so long-winded! Didn't mean to just pour my guts out

all over

> the group! I was just wishing I had someone to call and vent to

after the

> appointment, someone who understood what I was talking about with

all the

> thyroid terms, anyway! My parents are in Florida on a much deserved

> vacation, and I didn't want to get Mom all riled up when she's

supposed to

> be relaxing. My hubby just announced that we're going to have to

close up

> his business (he's self-employed) and get a " real job " so he's

REALLY

> depressed about that. He graciously listened to my vent and

sympathized, but

> he's got enough to worry about now in how to tell our employees.

>

> So thanks if you've made it this far and are still awake (maybe

I've found

> the cure for those with sleep problems!) I appreciate you all being

there to

> listen! In the big scheme of things, this really isn't a major

problem,

> what's important is that I'm getting better. It's just another

> disappointment in a day of too many disappointments already!

>

> Hope you all are having a better day and feeling good (special good

luck to

> )

>

>

>

> Re: Got my labs back - amazed!

>

>

> > !

> >

> > Great news!

> >

> > Be prepared, however. Your doc may only be looking at the TSH

and still

> > thinking about treatment. Perhaps that's the reason he wants to

see you.

> > Hopefully not, but best to walk in with your convictions solid and

> prepared

> > for anything.

> >

> > B

> >

> >

[Guest guest]

-Dear :

I really feel for you too, just went through your EXACT experience

just exactly one week ago (See my message #11316 and responses) when

my doc called about lab results. I have been on PTU for only 4 months

since my initial GD diagnosis and during the visit he was saying how

he thinks my labs will finally show my tsh going up by now. In my

head I remembered reading and seeing posts about how tsh takes a long

time and not to rely on this tests during atd's but I just didn't

really trust my memory at the moment. Then the call comes...all my

labs FT4, FT3, normal (as they have been for 3 1/2 months now) but

tsh still 0.01. I feel fine but he is all concerned and even

consulted with other docs about this. What's so sad is here I am in

NYC at Columibia Med. center and here are 3 doctors all concerned

about tsh not rising after only 4 months !!?? This is just so

depressing that docs all over this country are just so clueless. I am

in the process of gathering articles and literature to mail him

regarding the tsh levels so he will hopefully be more patient. I just

wanted to say I sympathize with your situation, I was all bummed out

too thinking, geez I would hate to have to go through the process of

finding another doc (and I do like this guy he spends alot of time

with me and is caring) since he obviously does not know alot about

this disease !! Keep your chin up.

-- In graves_support@y..., " L. Buck " <mlbuck@q...> wrote:

> Sigh, well I am now officially joining the ranks of those

disappointed and

> discouraged by their doctors. I was trying not to be pessimistic

and giving

> my doc the benefit of the doubt, but and all you others who

warned me

> were right on target!

>

> Doc wanted to discuss my latest lab results (where my FT4 and FT3

were

> normal, TSI were in normal range, but TSH was still .03) Apparently

all he

> cared about was that the TSH was still .03. He recommended that I

do RAI.

> Said that my thyroid is still hyperfunctioning and that most women

in my

> situation (why particularly did he say women I wondered) would have

had the

> RAI by now. Geez! I was just diagnosed 6 months ago, and my FT4 was

only

> elevated for 3 of those months, and even the TSH has only been low

for less

> than a year.

>

> He was concerned that my TSH was still too low and I pointed out

that

> perhaps it just hasn't had enough time to come back up yet since my

FT4 has

> only been coming down for the last 4 months and said that I'd read

that it

> can take TSH 18 months to increase. (Apparently my doc needs to

read your

> article about TSH on Suite 101, Elaine.) He then argued that it

doesn't take

> that long because the TSH is a much more sensitive measurement of

thyroid

> function. True, I said, but it can take time for the pituitary to

respond to

> the changes. His argument for TSH not taking that long to respond

was that

> when you're hypo and you decrease the amount of replacement T4

you're

> taking, you will see an increase in TSH in about 4 weeks. Sure, I

accept

> this as being true, but didn't know the specific mechanism for why

hypers'

> TSH takes longer to respond, and found it pointless to argue since

he was so

> firm in his convictions.

>

> I asked what would be the point of having RAI at this point in

time, since

> my FT4 and FT3 are normal and my TSI have gone down? If I had RAI,

my TSI

> would most likely increase and I would surely become hypo. He asked

why I

> thought my TSI would increase and I explained about the RAI

initially making

> hyper worse from the blasting effect and elevating the TSI levels

and

> possibly developing GO. He said, " Oh, that (the TSI becoming

elevated)

> rarely ever happens! "

>

> He also refused to even consider the possibility that I may become

hypO or

> may also have Hashimoto's antibodies. I suggested that it wouldn't

be too

> unreasonable to believe since my mother has Hashimoto's. He said

that

> Hashimoto's was very rare and thyroid diseases aren't often

familial. OK,

> now I can recognize this as total BS! My mom's family has a very

long line

> of thyroid disease, both hyper and hypo, autoimmune and not! I

completely

> lost any credibility I had for him at that junction. He also said

it was

> very unlikely that I would have TSH receptor blocking antibodies

after I

> suggested that. (Yeah, buddy, but I'm already a statistical

anomaly).

>

> Now, to his credit (what little is left), his is still willing to

have my

> labwork checked every 3 months and monitor. I posed a hypothetical

question

> as to what he would think if next time I had my labs done in 3

months if my

> FT4 was BELOW normal (currently it's 0.85 in a range of 0.71 -

1.85). He

> asked what hypothetically my TSH would be and I suggested that it

would

> still be below normal range (because I don't think it's going to go

up

> _that_ much in 3 months!). I was wondering if he would consider the

> possibility that I had Hashi's if that occurred, but he said if my

TSH was

> still below normal even if the FT4 was below normal he would

consider me

> hyperthyroid. So now I have no idea what I will do now if that does

in fact

> happen. (Yes, I like to worry about all my possibilities, but this

one

> doesn't seem too unreasonable the way I'm going.)

>

> For all you on ATDs, Pam I think in particular mentioned that while

you were

> on ATDs, your FT4 did go low and your TSH was still low. Did you in

fact

> FEEL hypo in that case? I got the impression that the FT4 levels did

> accurately reflect whether people felt hypo, but this doctor makes

me think

> that isn't so! And I know there were so many of you that your TSH

did take a

> long to time increase on ATDs.

>

> , what exactly happened when you went hypo after being

diagnosed with GD

> and going into spontaneous remission? Did your doctors have a

difficult time

> believing it? How and when did they consider the possibility that

you might

> have had GD and HT both? We can certainly take this off-line if

it's you

> don't think it's pertinent to the group as a whole.

>

> Man, just when I was feeling so happy about my new lab results! I'm

a bit

> disillusioned now. I can really understand how easily people are

pushed into

> RAI now. I was so calm and non-threatening, I was just asking

questions

> backed up by facts I had read. I really hate when doctors get so

defensive

> when you question their recommendations. I feel almost as though I

have done

> something wrong by becoming more informed about my disease.

>

> Sorry to be so long-winded! Didn't mean to just pour my guts out

all over

> the group! I was just wishing I had someone to call and vent to

after the

> appointment, someone who understood what I was talking about with

all the

> thyroid terms, anyway! My parents are in Florida on a much deserved

> vacation, and I didn't want to get Mom all riled up when she's

supposed to

> be relaxing. My hubby just announced that we're going to have to

close up

> his business (he's self-employed) and get a " real job " so he's

REALLY

> depressed about that. He graciously listened to my vent and

sympathized, but

> he's got enough to worry about now in how to tell our employees.

>

> So thanks if you've made it this far and are still awake (maybe

I've found

> the cure for those with sleep problems!) I appreciate you all being

there to

> listen! In the big scheme of things, this really isn't a major

problem,

> what's important is that I'm getting better. It's just another

> disappointment in a day of too many disappointments already!

>

> Hope you all are having a better day and feeling good (special good

luck to

> )

>

>

>

> Re: Got my labs back - amazed!

>

>

> > !

> >

> > Great news!

> >

> > Be prepared, however. Your doc may only be looking at the TSH

and still

> > thinking about treatment. Perhaps that's the reason he wants to

see you.

> > Hopefully not, but best to walk in with your convictions solid and

> prepared

> > for anything.

> >

> > B

> >

> >

[Guest guest]

-Dear :

I really feel for you too, just went through your EXACT experience

just exactly one week ago (See my message #11316 and responses) when

my doc called about lab results. I have been on PTU for only 4 months

since my initial GD diagnosis and during the visit he was saying how

he thinks my labs will finally show my tsh going up by now. In my

head I remembered reading and seeing posts about how tsh takes a long

time and not to rely on this tests during atd's but I just didn't

really trust my memory at the moment. Then the call comes...all my

labs FT4, FT3, normal (as they have been for 3 1/2 months now) but

tsh still 0.01. I feel fine but he is all concerned and even

consulted with other docs about this. What's so sad is here I am in

NYC at Columibia Med. center and here are 3 doctors all concerned

about tsh not rising after only 4 months !!?? This is just so

depressing that docs all over this country are just so clueless. I am

in the process of gathering articles and literature to mail him

regarding the tsh levels so he will hopefully be more patient. I just

wanted to say I sympathize with your situation, I was all bummed out

too thinking, geez I would hate to have to go through the process of

finding another doc (and I do like this guy he spends alot of time

with me and is caring) since he obviously does not know alot about

this disease !! Keep your chin up.

-- In graves_support@y..., " L. Buck " <mlbuck@q...> wrote:

> Sigh, well I am now officially joining the ranks of those

disappointed and

> discouraged by their doctors. I was trying not to be pessimistic

and giving

> my doc the benefit of the doubt, but and all you others who

warned me

> were right on target!

>

> Doc wanted to discuss my latest lab results (where my FT4 and FT3

were

> normal, TSI were in normal range, but TSH was still .03) Apparently

all he

> cared about was that the TSH was still .03. He recommended that I

do RAI.

> Said that my thyroid is still hyperfunctioning and that most women

in my

> situation (why particularly did he say women I wondered) would have

had the

> RAI by now. Geez! I was just diagnosed 6 months ago, and my FT4 was

only

> elevated for 3 of those months, and even the TSH has only been low

for less

> than a year.

>

> He was concerned that my TSH was still too low and I pointed out

that

> perhaps it just hasn't had enough time to come back up yet since my

FT4 has

> only been coming down for the last 4 months and said that I'd read

that it

> can take TSH 18 months to increase. (Apparently my doc needs to

read your

> article about TSH on Suite 101, Elaine.) He then argued that it

doesn't take

> that long because the TSH is a much more sensitive measurement of

thyroid

> function. True, I said, but it can take time for the pituitary to

respond to

> the changes. His argument for TSH not taking that long to respond

was that

> when you're hypo and you decrease the amount of replacement T4

you're

> taking, you will see an increase in TSH in about 4 weeks. Sure, I

accept

> this as being true, but didn't know the specific mechanism for why

hypers'

> TSH takes longer to respond, and found it pointless to argue since

he was so

> firm in his convictions.

>

> I asked what would be the point of having RAI at this point in

time, since

> my FT4 and FT3 are normal and my TSI have gone down? If I had RAI,

my TSI

> would most likely increase and I would surely become hypo. He asked

why I

> thought my TSI would increase and I explained about the RAI

initially making

> hyper worse from the blasting effect and elevating the TSI levels

and

> possibly developing GO. He said, " Oh, that (the TSI becoming

elevated)

> rarely ever happens! "

>

> He also refused to even consider the possibility that I may become

hypO or

> may also have Hashimoto's antibodies. I suggested that it wouldn't

be too

> unreasonable to believe since my mother has Hashimoto's. He said

that

> Hashimoto's was very rare and thyroid diseases aren't often

familial. OK,

> now I can recognize this as total BS! My mom's family has a very

long line

> of thyroid disease, both hyper and hypo, autoimmune and not! I

completely

> lost any credibility I had for him at that junction. He also said

it was

> very unlikely that I would have TSH receptor blocking antibodies

after I

> suggested that. (Yeah, buddy, but I'm already a statistical

anomaly).

>

> Now, to his credit (what little is left), his is still willing to

have my

> labwork checked every 3 months and monitor. I posed a hypothetical

question

> as to what he would think if next time I had my labs done in 3

months if my

> FT4 was BELOW normal (currently it's 0.85 in a range of 0.71 -

1.85). He

> asked what hypothetically my TSH would be and I suggested that it

would

> still be below normal range (because I don't think it's going to go

up

> _that_ much in 3 months!). I was wondering if he would consider the

> possibility that I had Hashi's if that occurred, but he said if my

TSH was

> still below normal even if the FT4 was below normal he would

consider me

> hyperthyroid. So now I have no idea what I will do now if that does

in fact

> happen. (Yes, I like to worry about all my possibilities, but this

one

> doesn't seem too unreasonable the way I'm going.)

>

> For all you on ATDs, Pam I think in particular mentioned that while

you were

> on ATDs, your FT4 did go low and your TSH was still low. Did you in

fact

> FEEL hypo in that case? I got the impression that the FT4 levels did

> accurately reflect whether people felt hypo, but this doctor makes

me think

> that isn't so! And I know there were so many of you that your TSH

did take a

> long to time increase on ATDs.

>

> , what exactly happened when you went hypo after being

diagnosed with GD

> and going into spontaneous remission? Did your doctors have a

difficult time

> believing it? How and when did they consider the possibility that

you might

> have had GD and HT both? We can certainly take this off-line if

it's you

> don't think it's pertinent to the group as a whole.

>

> Man, just when I was feeling so happy about my new lab results! I'm

a bit

> disillusioned now. I can really understand how easily people are

pushed into

> RAI now. I was so calm and non-threatening, I was just asking

questions

> backed up by facts I had read. I really hate when doctors get so

defensive

> when you question their recommendations. I feel almost as though I

have done

> something wrong by becoming more informed about my disease.

>

> Sorry to be so long-winded! Didn't mean to just pour my guts out

all over

> the group! I was just wishing I had someone to call and vent to

after the

> appointment, someone who understood what I was talking about with

all the

> thyroid terms, anyway! My parents are in Florida on a much deserved

> vacation, and I didn't want to get Mom all riled up when she's

supposed to

> be relaxing. My hubby just announced that we're going to have to

close up

> his business (he's self-employed) and get a " real job " so he's

REALLY

> depressed about that. He graciously listened to my vent and

sympathized, but

> he's got enough to worry about now in how to tell our employees.

>

> So thanks if you've made it this far and are still awake (maybe

I've found

> the cure for those with sleep problems!) I appreciate you all being

there to

> listen! In the big scheme of things, this really isn't a major

problem,

> what's important is that I'm getting better. It's just another

> disappointment in a day of too many disappointments already!

>

> Hope you all are having a better day and feeling good (special good

luck to

> )

>

>

>

> Re: Got my labs back - amazed!

>

>

> > !

> >

> > Great news!

> >

> > Be prepared, however. Your doc may only be looking at the TSH

and still

> > thinking about treatment. Perhaps that's the reason he wants to

see you.

> > Hopefully not, but best to walk in with your convictions solid and

> prepared

> > for anything.

> >

> > B

> >

> >

[Guest guest]

Hi ,

If you really like this doc and you have a good line of communication with

him, then maybe he will respond with the information you are sending him.

This could make all the difference in his future patients and hopefully get

him interested enough to do some up to date research and learn from us.

Maybe that is part of what we are all about, helping to bring some of our

docs into this new century.

Don't give up hope on him yet...and always remember, your treatment decision

is YOURS, not his, no matter what he may want to do.

Take care,

Jody

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp.

[Guest guest]

Hi ,

If you really like this doc and you have a good line of communication with

him, then maybe he will respond with the information you are sending him.

This could make all the difference in his future patients and hopefully get

him interested enough to do some up to date research and learn from us.

Maybe that is part of what we are all about, helping to bring some of our

docs into this new century.

Don't give up hope on him yet...and always remember, your treatment decision

is YOURS, not his, no matter what he may want to do.

Take care,

Jody

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp.

[Guest guest]

Hi Katy,

I went very hypO two months after being on ATDs, to the point that I had to

go off of them for three days to de-hypO me! So, it is possible to go hypO

that soon. I know when I'm on the hypO side because I get " puffy " and I get

a headache that never goes away. But, it is so hard to tell when you're

borderline!

Take care,

Holly

[Guest guest]

Hi Katy,

I went very hypO two months after being on ATDs, to the point that I had to

go off of them for three days to de-hypO me! So, it is possible to go hypO

that soon. I know when I'm on the hypO side because I get " puffy " and I get

a headache that never goes away. But, it is so hard to tell when you're

borderline!

Take care,

Holly