Re: Normal or return to hyper?

[Guest guest]

Hi ,

If it were ME, I would request blood work for the TSI and TPO antibody

tests, but would cancel the appointment with this doctor (if I could swing

getting the labs without seeing the doc), and find a new doctor who is good

with ATDs. If antibodies are negative, I would take a wait and see

approach, get labs in 2-3 months (unless I felt symptoms sooner). However,

if my antibodies were present, I would then want to be on a block and

replace regimen (ATD with addition of synthroid) as soon as I located a new

doctor who would work with me in a collaborative way. It is not good to be

subclinical hyperT, so you may want to watch out for that -- it can

increase your risk of cardiac problems. You can read Elaine's article on

Suite 101 about Subclinical HyperT (low TSH with normal FT4 and FT3, I

believe).

Take care, and try to relax -- you have time to work this out.

At 09:54 AM 8/5/2003, you wrote:

>Hi all! Hope everyone's having a good day!

>

>I was until my doctor's office called...now I am confused and stressed

[Guest guest]

Hi ,

Your labs would be hypo for me! I only seem to feel good if my FT4 is up

near the top of the range, say 1.6. And to get there, my TSH is usually low.

But that said, I'm still taking my 2 mg. of Tap a day, and hoping to get to

remission. You seem to be there, and that's great. I wonder if you're

anticipating problems with the doctor that might not even occur. I can't

believe, with a ft4 so low, that he's going to ask you to go back on ATD's!

And anyway, you can simply say " no, I feel good for the first time right

now, and I want to watch the trends--how about giving me 2 lab slips, so I

can get an extra set of labs done mid-point between our appts. if I feel

unsure of what direction I'm trending in " , or something like that. In my

experience, if the doc knows you're sensitive to your own levels and that

you're not some loose cannon who is going to allow herself to go way hyper

without noticing, at least my doc is agreeable to such a plan.

Good luck, and don't worry! It's not good for your thyroid,

Terry

>

> Reply-To: graves_support

> Date: Tue, 5 Aug 2003 09:54:16 -0400

> To: <graves_support >

> Subject: Normal or return to hyper?

>

> Hi all! Hope everyone's having a good day!

>

> I was until my doctor's office called...now I am confused and stressed

> Just got back my labs from 7/25/03 - here's the rundown.

>

> 10/30/02 FT3 3.10 (2.3 - 4.2)

> FT4 1.00 (.80 - 1.8)

> TSH 0.97 (.49 - 4.67)

>

> 2/11/03 FT4 0.90

> TSH 2.81 (.40 - 5.5)

>

> 5/7/03 FT4 0.96

> TSH 0.73 (.40 - 5.5)

>

> 7/25/03 FT3 3.33

> FT4 1.07

> TSH 0.52 (.40 - 5.5)

>

> To me, this all looks pretty good. And, more importantly, I feel good for

> the first time since December! As a reminder, I am not on any medications. I

> am technically " uuntreated " . My FT3 and FT4 both seem to be relatively

> stable. It's that stupid TSH that has it's own mind. And that seems to be

> the only thing my equally stupid doctor cares about.

>

> Now, possibly I am returning to hyper, or maybe this is my normal. Any ideas

> on that? I certainly feel more " normal " . My heartrate is still normal,

> between 65-75. I'm not losing any weight like before I was diagnosed. If

> anything, I'm still gaining a few mysterious pounds. I'm not very hungry

> like when hyper. In fact, sometimes I skip lunch and don't notice it. If I

> am returning to hyper, I don't feel it yet. My joint pains are gone, I'm not

> freezing like I usually am. I'm still colder than everyone else around me,

> but I least I don't feel the need to put on a couple of sweaters. I have

> energy for the first in a long time. And it sure doesn't look like my FT4

> and FT3 are high by any account. I'm thinking I just have to continue the 3

> month wait-and-see approach, which is what I have been doing for the past 2

> years.

>

> Here's the problem. The nurse said when she called that the doctor was

> concerned that my TSH was only just barely in range and that she wasn't sure

> what he wanted to do about that. Here's what irks me...when I went in with

> the TSH of 2.81 and felt absolutely hypo lousy, doctor said there wasn't

> anything they could do for me since that was still in " normal " range. But

> now that I feel _good_, he wants to muck it up even though it's still in

> " normal " range! This makes me so incredibly ANGRY!

>

> I seem to remember that there are other people out there who run a low TSH

> with normal FT4 and FT3. Terry - were you one? Does anyone else have there

> own examples of this? I can't recall who. And if so, what does your doctors

> say/think of this?

>

> Anyway, rant aside, I don't know what to do now. I'm already getting

> stressed for my appointment on Friday with the inevitable confrontation

> that's going to come of this with the doctor. I know other people get this

> way, too. I'm considering just cancelling my appointment and waiting until

> the next labs to see where it's gone then. If history repeats itself, it'll

> be colder then and my TSH will have gone back up. But that's if we're

> following the previous trend.

>

> So what do you think? Should I save my time, money, stress, and sanity (most

> important) and just cancel the appointment? I know it's kind of the coward's

> way out, but I really doubt I'm going to hear anything useful from him. The

> best that would happen would be that he'd just say to come back in 3 months

> and see what's happened with the labs, and duh, I already know that!

>

> And by the way, I know, what I really have to do is find another doctor!

>

> Anyway, thanks for any insight you guys have. I'm too close to the source to

> figure out what to do.

>

>

>

>

>

>

>

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

> 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 do not have the endorsement of

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

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

> --------

>

>

[Guest guest]

Hi -

Good advice, but I've already tried the antibody testing route and he won't

have anything to do with it. Doesn't see any value in testing for

antibodies. He doesn't think they have anything to do with thyroid levels.

I'm lucky I got FT3 and FT4...he usually only does the Totals, but since I

had 1.5 years worth of Free's from my old doctor, he agreed to run those,

too. Like I said before, yes, I know I have to find a new doc! Easier said

than done. You never know if the new guy is going to be an idiot or not

until you see him/her.

I'm not too worried about the new labs yet. My FT4 is still pretty low, so

that's a relatively good sign. I know I'm in trouble if if TSH stays low

this winter or if the FT4 goes up. Typically I tend toward the hypo end in

winter. I'd love to know what the TSI are. If they're up, I'll know

something is going on. The last time I've had anyone willing to run them was

Jan. 2002!

Re: Normal or return to hyper?

> Hi ,

> If it were ME, I would request blood work for the TSI and TPO antibody

> tests, but would cancel the appointment with this doctor (if I could swing

> getting the labs without seeing the doc), and find a new doctor who is

good

> with ATDs. If antibodies are negative, I would take a wait and see

> approach, get labs in 2-3 months (unless I felt symptoms sooner). However,

> if my antibodies were present, I would then want to be on a block and

> replace regimen (ATD with addition of synthroid) as soon as I located a

new

> doctor who would work with me in a collaborative way. It is not good to be

> subclinical hyperT, so you may want to watch out for that -- it can

> increase your risk of cardiac problems. You can read Elaine's article on

> Suite 101 about Subclinical HyperT (low TSH with normal FT4 and FT3, I

> believe).

> Take care, and try to relax -- you have time to work this out.

>

>

>

> At 09:54 AM 8/5/2003, you wrote:

> >Hi all! Hope everyone's having a good day!

> >

> >I was until my doctor's office called...now I am confused and stressed

>

>

>

[Guest guest]

-

Your experience is very similar! At TSH of 2.8, I felt just horrible! Lots

of hypo symptoms. Compared to that, this is wonderful I'd love to have an

endo who would at least entertain the thought that this new TSH of .52 is

more normal for me. That your endo says it's OK gives me some hope! Thanks

for that - it's very encouraging news!

Normal or return to hyper?

> Hi ,

>

> Three years ago, before I developed acute Graves (last year), my TSH was

..67 and my FT4 was 1.67. Based on that, last May my endo was willing to give

me enough Synthroid to balance my PTU and get me down to a TSH of .47. My

FT4 and T3 are fine (slightly above the middle, I think), and I feel good

for the first time in over a year.

>

> On my way to this point, during Jan.-April with normal FT4 and T3 (on the

lower end) and a TSH of 2.8, I had lots of hypo symptoms, which are now

mostly gone (like you I still run cold, which is OK for the summer!). So I

was so happy to have the endo acknowledge that a TSH of .47 was normal for

me.

>

> Now the endo wants me to wean of PTU without a TSI test . . . Lots of luck

in either getting yours to be more responsive or finding a better one!

> B.

>

>

>

[Guest guest]

LOL Terry -

You don't know this doctor! Yes he would expect to do something about the

TSH even if my FT4 is low. He is only concerned about TSH. He doesn't even

usually check Free's. Says, " The only true test of thyroid function is TSH " .

It's only because I have so many previous labs checking the Free's that he

agreed to run them. Trust me, this unfortunately will turn into a

confrontation

Good idea about getting 2 labs slips! I'm still debating whether to cancel,

but maybe I'll go just to try and get an additional lab slip. I'm also due

to have my annual bone scan and needed him to give me a slip for that, but

maybe I can get a GP to do all those things. Hmm. Have to consider.

Normal or return to hyper?

> >

> > Hi all! Hope everyone's having a good day!

> >

> > I was until my doctor's office called...now I am confused and stressed

> > Just got back my labs from 7/25/03 - here's the rundown.

> >

> > 10/30/02 FT3 3.10 (2.3 - 4.2)

> > FT4 1.00 (.80 - 1.8)

> > TSH 0.97 (.49 - 4.67)

> >

> > 2/11/03 FT4 0.90

> > TSH 2.81 (.40 - 5.5)

> >

> > 5/7/03 FT4 0.96

> > TSH 0.73 (.40 - 5.5)

> >

> > 7/25/03 FT3 3.33

> > FT4 1.07

> > TSH 0.52 (.40 - 5.5)

> >

> > To me, this all looks pretty good. And, more importantly, I feel good

for

> > the first time since December! As a reminder, I am not on any

medications. I

> > am technically " uuntreated " . My FT3 and FT4 both seem to be relatively

> > stable. It's that stupid TSH that has it's own mind. And that seems to

be

> > the only thing my equally stupid doctor cares about.

> >

> > Now, possibly I am returning to hyper, or maybe this is my normal. Any

ideas

> > on that? I certainly feel more " normal " . My heartrate is still normal,

> > between 65-75. I'm not losing any weight like before I was diagnosed. If

> > anything, I'm still gaining a few mysterious pounds. I'm not very hungry

> > like when hyper. In fact, sometimes I skip lunch and don't notice it. If

I

> > am returning to hyper, I don't feel it yet. My joint pains are gone, I'm

not

> > freezing like I usually am. I'm still colder than everyone else around

me,

> > but I least I don't feel the need to put on a couple of sweaters. I have

> > energy for the first in a long time. And it sure doesn't look like my

FT4

> > and FT3 are high by any account. I'm thinking I just have to continue

the 3

> > month wait-and-see approach, which is what I have been doing for the

past 2

> > years.

> >

> > Here's the problem. The nurse said when she called that the doctor was

> > concerned that my TSH was only just barely in range and that she wasn't

sure

> > what he wanted to do about that. Here's what irks me...when I went in

with

> > the TSH of 2.81 and felt absolutely hypo lousy, doctor said there wasn't

> > anything they could do for me since that was still in " normal " range.

But

> > now that I feel _good_, he wants to muck it up even though it's still in

> > " normal " range! This makes me so incredibly ANGRY!

> >

> > I seem to remember that there are other people out there who run a low

TSH

> > with normal FT4 and FT3. Terry - were you one? Does anyone else have

there

> > own examples of this? I can't recall who. And if so, what does your

doctors

> > say/think of this?

> >

> > Anyway, rant aside, I don't know what to do now. I'm already getting

> > stressed for my appointment on Friday with the inevitable confrontation

> > that's going to come of this with the doctor. I know other people get

this

> > way, too. I'm considering just cancelling my appointment and waiting

until

> > the next labs to see where it's gone then. If history repeats itself,

it'll

> > be colder then and my TSH will have gone back up. But that's if we're

> > following the previous trend.

> >

> > So what do you think? Should I save my time, money, stress, and sanity

(most

> > important) and just cancel the appointment? I know it's kind of the

coward's

> > way out, but I really doubt I'm going to hear anything useful from him.

The

> > best that would happen would be that he'd just say to come back in 3

months

> > and see what's happened with the labs, and duh, I already know that!

> >

> > And by the way, I know, what I really have to do is find another doctor!

> >

> > Anyway, thanks for any insight you guys have. I'm too close to the

source to

> > figure out what to do.

> >

> >

> >

> >

> >

> >

> >

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

> > 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 do not have the

endorsement of

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

>

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

----

> > --------

> >

> >

[Guest guest]

At 12:09 PM 8/5/2003, you wrote:

>Hi -

>

>Good advice, but I've already tried the antibody testing route and he won't

>have anything to do with it. Doesn't see any value in testing for

>antibodies. He doesn't think they have anything to do with thyroid levels.

,

This is why you need a new doctor. I hope you find one, and soon.

Best wishes,

[Guest guest]

-

You betcha! Now all I have to do is figure out when I call new potential

doctors' offices how to phrase a question to find out if they believe in

antibody testing or thik it's a waste of time. This is my stumbling block.

Any ideas on how to get such info _before_ I see them?

Re: Normal or return to hyper?

> At 12:09 PM 8/5/2003, you wrote:

> >Hi -

> >

> >Good advice, but I've already tried the antibody testing route and he

won't

> >have anything to do with it. Doesn't see any value in testing for

> >antibodies. He doesn't think they have anything to do with thyroid

levels.

>

> ,

> This is why you need a new doctor. I hope you find one, and soon.

> Best wishes,

>

>

>

>

[Guest guest]

Hey , congrats on the good labs and I'm glad you are feeling better

again!

I agree you are going to need a better doc if things continue to swing up

and down for you... one thing I've done with mixed success is call the

doctors office and ask to speak to his/her nurse - then I ask the nurse all

about the doctor's style and specific questions that help me figure out if

this is a doc I can work with or not. Sometimes the nurse is very helpful

and sometimes not.. but worth the time rather than wasting time waiting for

a bad appt.

Hope you find someone good soon

Pam B.

[Guest guest]

,

I just caught you on the other 'channel'.

:-)

-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]

Still reading here ,

Remember.. my TSH is normal for ME at .45

My current doctor does NOT care if it goes a bit lower as long as my FREE Ts

are in range.

It is thyroid hormone that affects bone loss and our heart.. NOT the

pituitary hormone.

YES... the studies on this speak of TSH, but they do not speak of the FT

tests.

-Pam L -

[Guest guest]

Pam -

> It is thyroid hormone that affects bone loss and our heart.. NOT the

> pituitary hormone.

Yes! This is what I was looking for! I couldn't remember this fact and

couldn't find it in my articles I've saved! Thank you, thank you for pulling

out this nugget of info

I was worried about the subclinical hyper for that reason! Although, I think

I have a fairly recent article that says that suppressed TSH despite normal

thyroid hormone still results in bone loss. Have to look up that one. But

I'm glad about the heart news. Least I'm not at that point yet.

Also good to know that your doctor doesn't have a problem with the lower

TSH, too. That's the kind of reassurance I was looking for. I seem to have

one of the few unknowledgeable doctors who thinks it does matter - to the

exclusion of all other factors. I'd be more worried if the FT's were high,

but they're not. And they've been at the same level (not significantly

different) for 2 years now. You think that would count for something?

Apparently not.

Re: Normal or return to hyper?

> Still reading here ,

>

> Remember.. my TSH is normal for ME at .45

>

> My current doctor does NOT care if it goes a bit lower as long as my FREE

Ts

> are in range.

>

> It is thyroid hormone that affects bone loss and our heart.. NOT the

> pituitary hormone.

>

> YES... the studies on this speak of TSH, but they do not speak of the FT

> tests.

>

> -Pam L -

>

>

[Guest guest]

,

If you go to the Thyroid Awareness 101 thread at Mediboard, about half-way

down the page, you will find suggested questions to ask a doctor. You may

have to interview the doctor yourself, if you don't get much info from the

nurse (I would be less than optimistic about that). But you may want to ask

if the doctor has a lot of patients on ATDs, and what percentage of his

practice deals with Graves' and ATD therapy. You may want to ask for his

assistant if you get a receptionist (or they may pass you along). I usually

am rather direct, and ask things in a straightforward manner. I say that

I've decided I'm not interested in RAI, and is the doctor especially good

with ATDs, and what do they usually do when it comes to antibody testing.

Also, how do they determine if you are in remission.

At 01:18 PM 8/5/2003, you wrote:

> -

>

>You betcha! Now all I have to do is figure out when I call new potential

>doctors' offices how to phrase a question to find out if they believe in

>antibody testing or thik it's a waste of time. This is my stumbling block.

>Any ideas on how to get such info _before_ I see them?

>

>