Re: Frustrated - Elaine, , Anyone?

[Guest guest]

Hi Carol,

I'll try to answer a few of your questions. Not all, as I'm not competent to

do that. First, I agree you need a different doc who is THERE to see you and

can answer questions. Second, you responded so well to the 10 mg., got your

FT4 down almost to normal in 2 weeks--what on earth was the rush to up your

meds? Probably just make you hypO at this point, as you seem to suspect.

It does require a good relationship with a doc to start fiddling with meds,

and some experience with taking them and watching your levels, too. I only

fiddle with my doc's approval, personally--and he always gives me an extra

lab slip, so I can get tested midway between visits if I need it. But in

your case, I bet you won't make it 2 weeks to the next appt. on 20 mg.

without misery--If I were you, and my symptoms went clearly hypO, I'd just

drop the meds anyway. You were doing fine on 10 mg., just remember, take it

in split doses not all at once.

Finally, you don't need TSI every time! This is a very expensive test, and

is useful to see about diagnosis, and then, when you think you're ready to

stop meds because you're in remission, check again--if it's still elevated,

stopping the meds is not advised. The free t's are much more indicative of

how you're responding to the meds.

Terry

>

> Reply-To: graves_support

> Date: Mon, 10 Nov 2003 20:07:20 -0600

> To: <graves_support >

> Subject: Frustrated - Elaine, , Anyone?

>

> Went to my 2nd visit with endo #1 today and got stuck with his NP, who

> couldn't answer my questions.

>

> Backing up a bit . . .

> LABS

> 9/4 -- TSH .004 (norm .35 - 5.5)

> 10/14 -- FT4 3.62 (norm 0.61 - 1.76), TSH .005 (norm .35- 5.5), TPO Ab 431

> (norm 0 - 34)

> Started Tapazole 10 mg BID on 10/18

> Started Toprol XL 50mg (What a godsend!) on 10/28

> 11/03 -- FT4 2.12 (norm 0.61 - 1.76), TSH .004 (norm .35 - 5.5), TPO Ab

> wasn't ordered.

> Dr. ordered change to Tapazole 20 mg BID on 11/07, but I went to 15mg BID

> because I'd had mild hives on 11/1-11/4 that resolved when the weather FINALLY

> cooled and didn't want to break out in a big way. No hives for 2 days after

> the slight increase in dose (15mg bid) , so I increased to 20mg BID today.

> After ONE 20mg dose, I'm sluggish, but will watch this for a couple of days.

>

> Okay, now for the frustrating part. The NP could answer NONE of my questions.

> (Why DOUBLE the meds when there'd been such an improvement in the FT4 after 3

> weeks on 10mg bid? Why test for TPO Ab instead of TSI? Why no antibody test at

> all this past time? Why no FT3? Why does the Dr. feel RAIU is the only way to

> distinguish between Hashi's and Grave's?) The only question he could answer

> was that I couldn't ask the Dr. myself because he wasn't there. I don't think

> this guy even knew what TSI was until I explained it to him (although I doubt

> I did a very good job of it - still a bit muddle-brained at this point).

> Labwork to be done in 2 weeks. And I'm not to go back for f/u until

> mid-February. Whatever.

>

> I have an appointment with a different endo this Friday. I'm hoping this guy

> is more receptive to my requests. He's definitely closer to the town where I

> live. Anyway, I really want to make sure I have my facts straight and can

> hold my own when trying to get the tests I've learned are best. I also don't

> want to get talked into RAIU testing. I'd like to get all this straight in

> our initial visit so we have the same treatment plan from the get-go. Can

> someone please point me to specific, concise info that I can either easily

> memorize/quote or can print off to take with me? Or even help me formulate my

> arguments re: the following?

> A) Why I want a TSI rather than/in addition to TPO Ab every time in words the

> Doc can relate to.

> Why RAIU isn't necessary.

> I can explain myself re: why I don't want to consider RAI in my treatment

> option, but I don't think these guys are at all receptive to any suggestions

> re: lab testing.

>

> Oh. One more thing. I really am nervous about adjusting my dosages without

> the Dr.'s go-ahead for a couple of reasons. Am I being overly cautious here?

> I'd be interested in hearing a variety of views on this.

>

> Thanks lots!

>

> Carol

>

>

[Guest guest]

Carol,

Right now, you just need the TSI test, and an ultrasound of the thyroid if

you haven't yet had one (to check for nodules). I would refuse anything

else, if it were me. Thyroid levels, FT3 and FT4, should be done every 4

weeks (along with WBC), and sooner if you are experiencing symptoms. I

would err on the side of too frequent testing of thyroid levels before

stabilizing rather than not enough, as you will need to stay on top of your

dropping levels so that you don't go too low. I had to initiate all blood

work and dose reductions; if not, I would have suffered greatly.

Antibody testing should not be done more frequently than every 3 months,

and probably less if there is evidence that you are still hyper (i.e.,

stabilized on medication but not hypO). If a doctor wants to take you off

medication at an arbitrary cutoff point, that would be a good time to

insist on antibody testing as well, and there are studies that show that if

TSI or TBII are positive, then the chances of prompt relapse are high.

If you are positive for TSI and have no nodules, then an RAIU test is useless.

Here is a good article by Elaine about the testing you need:

http://www.suite101.com/article.cfm/9630/100906

At 09:07 PM 11/10/2003, you wrote:

>Anyway, I really want to make sure I have my facts straight and can hold

>my own when trying to get the tests I've learned are best. I also don't

>want to get talked into RAIU testing. I'd like to get all this straight

>in our initial visit so we have the same treatment plan from the

>get-go. Can someone please point me to specific, concise info that I can

>either easily memorize/quote or can print off to take with me? Or even

>help me formulate my arguments re: the following?

>A) Why I want a TSI rather than/in addition to TPO Ab every time in words

>the Doc can relate to.

> Why RAIU isn't necessary.

>I can explain myself re: why I don't want to consider RAI in my treatment

>option, but I don't think these guys are at all receptive to any

>suggestions re: lab testing.

[Guest guest]

Hi Carole,

Since you already have tested positive for thyroid antibodies, this shows

that your hyperthryoidism is autoimmune or Graves' disease. The TSI would help

support this and give you a baseline level.

TSI stimulate thyroid cells to produce excess thyoid hormone and are the

direct cause of Graves' disease. They generally cause symptoms when the TSI is

greater than 130% activity.

The recommeneded starting dose for Tapazole is 30 mg daily. Some doctors use

a lower dose to make sure there are no side effects, and in people with milder

symptoms a lower dose is sometimes used. With the recommended starting dose,

the thyroid hormone stored in your gland is used up within 6-8 weeks and your

dose can be reduced. At this time, you only need enough ATD to help reduce

production of new thyroid hormone. The usual maintenance dose is 2.5-10.0 mg

daily.

You would only need the TSI early on to help support your diagnosis and you'd

need it after 3-6 months to see if you were responding well to the meds.

Because TSI are IgG antibodies, they normally persist for 3 months before

breaking

down. So even if your immune system stops producing TSI, you are not going to

notice a change in your levels in 2 weeks.

You'll also need a TSI when you're getting by on a low ATD dose and suspect

you may be in remission.

The TSI test is a definitive diagnostic test for Graves' disease, whereas the

uptake can only suggest GD and help determine if nodules are present. At the

last thyroid conference I attended, pathologists recommended that the RAI-U no

longer be used because it's not very good at assessing nodules. If your

doctor suspects that nodules are also present, he can order an ultrasound. Take

care, Elaine

[Guest guest]

Very helpful. Thank you, Terry! I opted to take 15mg last evening rather than

20. I think I'll stick with that for a bit. I may never see endo #1 again and

will explain to #2 on Friday what I've done and why.

Thanks again!

Carol

Re: Frustrated - Elaine, , Anyone?

Hi Carol,

I'll try to answer a few of your questions. Not all, as I'm not competent to

do that. First, I agree you need a different doc who is THERE to see you and

can answer questions. Second, you responded so well to the 10 mg., got your

FT4 down almost to normal in 2 weeks--what on earth was the rush to up your

meds? Probably just make you hypO at this point, as you seem to suspect.

It does require a good relationship with a doc to start fiddling with meds,

and some experience with taking them and watching your levels, too. I only

fiddle with my doc's approval, personally--and he always gives me an extra

lab slip, so I can get tested midway between visits if I need it. But in

your case, I bet you won't make it 2 weeks to the next appt. on 20 mg.

without misery--If I were you, and my symptoms went clearly hypO, I'd just

drop the meds anyway. You were doing fine on 10 mg., just remember, take it

in split doses not all at once.

Finally, you don't need TSI every time! This is a very expensive test, and

is useful to see about diagnosis, and then, when you think you're ready to

stop meds because you're in remission, check again--if it's still elevated,

stopping the meds is not advised. The free t's are much more indicative of

how you're responding to the meds.

Terry

[Guest guest]

Thanks, !

I believe the plan is to continue labs every three or four weeks, but it's

looking like FT4 & TSH only. Already had an ultrasound and it was unremarkable.

The article is just what I needed! I very much appreciate your help here.

'Nother question: Why would they run TPO Ab to begin with? What's the

correlation?

Carol

Re: Frustrated - Elaine, , Anyone?

Carol,

Right now, you just need the TSI test, and an ultrasound of the thyroid if

you haven't yet had one (to check for nodules). I would refuse anything

else, if it were me. Thyroid levels, FT3 and FT4, should be done every 4

weeks (along with WBC), and sooner if you are experiencing symptoms. I

would err on the side of too frequent testing of thyroid levels before

stabilizing rather than not enough, as you will need to stay on top of your

dropping levels so that you don't go too low. I had to initiate all blood

work and dose reductions; if not, I would have suffered greatly.

Antibody testing should not be done more frequently than every 3 months,

and probably less if there is evidence that you are still hyper (i.e.,

stabilized on medication but not hypO). If a doctor wants to take you off

medication at an arbitrary cutoff point, that would be a good time to

insist on antibody testing as well, and there are studies that show that if

TSI or TBII are positive, then the chances of prompt relapse are high.

If you are positive for TSI and have no nodules, then an RAIU test is useless.

Here is a good article by Elaine about the testing you need:

http://www.suite101.com/article.cfm/9630/100906

At 09:07 PM 11/10/2003, you wrote:

>Anyway, I really want to make sure I have my facts straight and can hold

>my own when trying to get the tests I've learned are best. I also don't

>want to get talked into RAIU testing. I'd like to get all this straight

>in our initial visit so we have the same treatment plan from the

>get-go. Can someone please point me to specific, concise info that I can

>either easily memorize/quote or can print off to take with me? Or even

>help me formulate my arguments re: the following?

>A) Why I want a TSI rather than/in addition to TPO Ab every time in words

>the Doc can relate to.

> Why RAIU isn't necessary.

>I can explain myself re: why I don't want to consider RAI in my treatment

>option, but I don't think these guys are at all receptive to any

>suggestions re: lab testing.

[Guest guest]

Carol,

TPO antibodies are those that cause destruction of thyroid cells -- they

are antibodies to thyroid peroxidase. They are present in high amounts

typically with those who have Hashimoto's (and are hypO), but a high

percentage of those with GD also have them (including me). TPO-Ab is a

marker for autoimmune thyroid disease, so it is useful for diagnostic purposes.

At 08:24 AM 11/11/2003, you wrote:

>Thanks, !

>

>I believe the plan is to continue labs every three or four weeks, but it's

>looking like FT4 & TSH only. Already had an ultrasound and it was

>unremarkable. The article is just what I needed! I very much appreciate

>your help here.

>

>'Nother question: Why would they run TPO Ab to begin with? What's the

>correlation?

>

>Carol

[Guest guest]

Carol,

Do take your meds 5 mg. every 8 hours, or as close to that as possible. When

you wake up, before bed, and half-way inbetween. It will make a HUGE

difference in how well you respond to them. I didn't believe until I tried

it myself.

Terry

I opted to take 15mg last evening rather than 20.