WBS it's a good thing I read

[Guest guest]

I called to ask my Endo about my schedule for my upcoming whole body scan

(WBS) for those of you who did not read my (oops) post to Nick, My schedule was

to receive a dose of tracer rai on Dec 12 and scan on Dec 19 (7 days later) when

his office staff called me back their reply was " You are getting a little more

than the traditional 5 mCi of rai that is why there is such a delay between dose

and scan. " I said first of all 5 mCi is too much to begin with this can cause a

" stunning " of the cells. Secondly whyy in the world would I be receiving MORE! I

was then put on hold. When she came back she said " There has been a mistake "

(Duh!) " You were scheduled for an ABLATIVE dose of rai, not a tracer dose (175

mCi). " WOW! Not to mention what info they used to arrive at this number (there

is no info except that this was the dose given to me originally) Anyway they are

regrouping and calling me back with a new schedule. Hopefully with a scan at 24

hrs and a second at 48 hrs. (this is

what I have requested based on the following)

Bergeron(age 24,Tampa FL)

elizabetholson0@...

that last 0 is a zero

pap. thyca 11/00 (both lobes and extensive lymph nodes)

tt 12/00, RAI 175mCi 1/01

9/01 TSH 2.32, TG antibodies <2, TG 2.3 raised levoxyl from .125 to .137

results...

11/01 TSH .3 TG 1.9

currently going hypo for Dec 19 scan?

--

On Thu, 15 Nov 2001 12:04:55

Nick Rusko wrote:

>

>

> ( I, like you, am a patient)

>

>

> Learn the rules so you know how to break them properly.

> Dalai Lama

> (So many physicians break them

(proper rules for ThyCa management) because they don't know them and

> are " dancing in the dark " .

And things, then, tend to get broken) ie. (resulting in recurrence)

>

>

>

> Hi :-)

>

> Not " embarrassingly basic " , your question :-) Quite to the contrary. The

" basic " question cannot be answered by most treating physicians, let alone by

patients themselves. But wait.. we (patients) _DO_ have a source to the

information that our physicians _must_ have for themselves in order for them

to make the " basic " decisions relative to good outcome and proper treatment for

the care of our Thyroid Cancer.

>

> Lets take your circumstance, for instance. You say that as of 11/13/01 you

discontinued your thyroxine med.-taking, and are scheduled for the diagnostic

(tracer dose) scan on Dec. 19th '01.

>

> (Continued after Dr. Ain's post, below).....

>

>*******************************************************************************\

*************************************************************

>

>(Dr. Ain)

>

> " The half-life of levothyroxine is 7 days. It takes from 6-8 half-lives,

>when resuming any medication, for the level of the medication to

>reach its ultimate steady-state level in the body. For levothyroxine

>(Synthroid, Levothroid, Levoxyl, etc.), this means that it will take

>fully 6-8 WEEKS for the levels to come back to normal.

>

>When stopping levothyroxine, the curve is identical although

>reversed. That is why the TSH level does not typically become

>sufficiently elevated for I-131 scans or therapy until 6 weeks after

>stopping the medication.

>

>**************PLEASE BE ADVISED**********************

>THE INFORMATION CONTAINED IN THIS COMMUNICATION IS INTENDED

>FOR EDUCATIONAL PURPOSES ONLY. IT IS NOT INTENDED, NOR SHOULD

>IT BE CONSTRUED, AS SPECIFIC MEDICAL ADVICE OR DIRECTIONS. ANY

>PERSON VIEWING THIS INFORMATION IS ADVISED TO CONSULT THEIR OWN

>PHYSICIAN(S) ABOUT ANY MATTER REGARDING THEIR MEDICAL CARE.

>*************************************************

> B. Ain, M.D.

>Associate Professor of Internal Medicine

>Director, Thyroid Nodule & Oncology Clinical Service

>Director, Thyroid Cancer Research Laboratory

>Division of Endocrinology and Molecular Medicine

>Department of Internal Medicine, Room MN520

>University of Kentucky Medical Center

>800 Rose Street, Lexington, Kentucky 40536-0084

>*******************************************************************************\

************************************************************

>

>

> ....... (continuing) --> Soooo, 8 weeks is 56 days, 6 weeks is 42 days...

and the number of days between 11/13 and 12/19 is 37.

>Your doctor is recommending that you wait only 5 weeks and 2 days before the

diagnostic scan which minimum wait time should be no less than 6 weeks and for

some.. may be as long as 8 weeks before tsh comes into proper range for testing.

There are some here who, after 4 or 5 weeks _do_ come into the preferred

numeric range (tsh 30>) for testing. But this has come to light either by an

ill-feeling patient who demand that they be checked earlier than is advised, who

do in fact, prove to be in the proper testing range much to the surprise of the

doctor. Or that a physician such as yours, offhandedly suggests less than the

minimum 6 weeks, does a blood test and you.. get lucky. Or do you... What is

odd.. is that the time-to-testing interval " seems " to defy the rule of science

that proves mathematically, that one must be off meds. for at least 6 weeks or

possibly longer to reach a sufficient range number for testing. The half-life

predictability of stable compounds can be measure

d. And so.. it sets one to wonder when a numeric value or standard is arrived at

_before_ it should be possible to do so. I think that the differences in

wait-time to tsh 30> is brought about by testing-lab error, lab tech error or..

may be that the patient's tsh was _already_ numerically higher than it was

assumed to be at the point that the meds. were discontinued. This could have

come about through missed meds. or by using a prescription that was not up to

standard(s) in the first place.

>

> Now then.. your doc. says 5+ weeks, only for testing. And 7 days between

diagnostic and therapeutic scans (with RAI in -between I assume) Answer: In

_his_ " shop " anything is possible. But in a setting of much more technical

knowledge and with a dynamic understanding of that knowledge.... a medical

protocol that would do a scan at exactly 24 hours following the diagnostic scan

and another one at 48 hours after the diagnostic dose would contribute _MUCH_

needed information as to just how to proceed, next.

>

> Here's why.... see Dr. Ain, below.

>

>

>

>*******************************************************************************\

********************************************************************************\

******

>(Dr. Ain Writes)

>

> " It is my practice to do a 24 hour and a 48 hour whole body scan after the

administration of the I-131 tracer dose. This permits me to see if the tumor

sites are rapidly discharging their I-131 and would require lithium to enhance

the therapy. Sometimes, if previous treatments have been unsuccessful, I both

increase the administered dose of I-131 and give lithium carbonate for the next

I-131 treatment. " Dr. Ain ( List post: Date: Thu, 13 Jul 2000 14:54:13 -0500)

>

>

>

> " In regards to the concept of tumor stunning, the following statements have

been sent by me before:

>

>In this situation, the small I-131 dose used for the scan can " stun " the tumor

so that the therapy dose

>is ineffective by not being taken up. If I suspect or detect this phenomenon,

it is my practice to put the patient back on levothyroxine for six months & then

perform a hypothyroid/low iodine diet preparation for a therapeutic radioiodine

dose (the size based on sites of metastasis) without a preceding scan. Prior to

discharge, I perform a post-therapy scan (which uses the previously-administered

therapy dose as the scanning dose). This approach has been generally successful

in our hands. " Dr. Ain (Date: Fri, 02 Jun 2000 16:10:53 -0400

>

>

>

>

> " It is not a rare event to see patients whose thyroglobulin values had been

undetectable, while their TSH was suppressed on levothyroxine therapy, for many

years and whose hypothyroid thyroglobulin values (when the TSH is >30) is

markedly elevated. Sometimes one sees thyroglobulin elevations above 100 ng/mL.

This suggests several points, some which are definite and some which are

reasonable conjectures:

>1. We are very sure that this represents residual or metastatic thyroid

carcinoma.

>2. The ability to completely suppress the thyroglobulin with suppression of

TSH implies that the cancer cells express functional TSH receptors, indicating

some degree of persistent differentiation.

>3. Without any comparable hypothyroid thyroglobulin value for 9 years, it is

impossible to imply a growth or recurrence rate.

>4. In my experience, papillary cancers without previous known distant

metastases, presenting in this current fashion, are usually able to be found in

the neck (most effectively by extensive ultrasound evaluation with fine needle

biopsy confirmation). It is important to precede such evaluation with an I-131

treatment of at least 150 mCi and a post-therapy whole body scan (2 days after

the treatment dose) to see if tumor can be localized. It is also important to

rule out non-radioactive iodine contamination by following a low iodine diet and

measuring the iodine excretion in a 24-hour urine sample, making sure that the

scan was not made negative by stable iodine contamination, prior to

administering the I-131 therapy dose. " Dr. Ain (Date: Fri, 07 Jul 2000 22:35:34

-0500)

>*******************************************************************************\

********************************************************************************\

**********

>

>

>+++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++\

+++++++++++++++++++++++++

>

>; the several diagnostic procedures of Dr. Ain that I have listed

above are only a _PART_ of what is necessary to be performed as medical

protocol which may help to identify and determine both, the extent and specific

nature(s) of a given circumstance of thyroid cancer involvement.

>

> Why don't many other physicians perform these same diagnostic tests and with

the same timing interval?? Because Dr. Ain is in the front of the " bus " as it

were and _most_ others are somewhere else, but with far less a view of the very

real circumstances facing them relative to thyroid cancer management.

>

> Your doctor already, isn't providing for sufficient time prior to your

diagnostic scan, in the first place. (should be 6-8 weeks)

>

> And he doesn't even have _any_ idea as to checking or how to check for.. or

the _reason_ to check for " rapidly discharging " of I-131.

>

> He probably has heard of the " stunning " factor but I'm sure, knows nothing

about how to proceed, if in fact he had suspected that it had occurred.

>

> You haven't mentioned LID (Low Iodine Diet).. has _he_ ??

>

> And, watch-it! He'll probably, even tell you to drink " lottsa water "

during your RAI process.

>

> And I'de venture that the mCi RAI dose amount that he arrives at will have

been gained via the " dart board " approach.

>

> What I'm saying is that.. there are plenty of physicians out there..

but only a few that know what they're doing when it comes to care and

> treatment of ThyCa. (Nick)

>

>

> (the following one-liners are a reprint-compilation from REPOSTS: (Dr.

Ain) that were posted in their entirety as identified on the next line)

> (Subject: REPOST: Dr. Ain:(Many) Re:ThyCa diagnosis & treatment

Clara, , Trish & All Date: Thu, 01 Nov 2001 11:10:02 -0500)

>

> THE UNDERSTANDING of EACH, EVERY and ALL of the FOLLOWING are

A-B-S-O-L-U-T-E-L-Y necessary for the PROPER management of ThyCa.

> And your/a physician MUST have them. (Nick)

>

>+++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++\

++++++++++++++++++++++++++

>

>*******************************************************************************\

********************************************************************************\

****

>(Dr. Ain)

>

>De-differentiated cancer

>

> The benefits of any particular dose of I-131 are only present at the time of

the single administration of the entire dose.

>

>tumor stunning

>

>an elevated thyroglobulin indicates residual thyroid cancer, even if the

radioiodine whole body scan is negative

>

> Scan negative thyroglobulin elevations

>

>only the portion of that radiation administered with a sufficient dose rate is

capable of killing the cancer cell.

>

>1. We obtain a diagnostic whole body scan at 48 hours (using 3-5 mCi I-131).

>

> Sometimes metastatic tumors may fail to retain the radioactive iodine for

very long (i.e. " rapid turnover " )

>

> We find that 48 hour post-therapy whole body scans provide superior imaging

resolution, as long...

>

>It is my practice to do a 24 hour and a 48 hour whole body scan after the

administration of the I-131 tracer dose.

>

>LITHIUM. Instead, it enhances I-131 RETENTION in tumors which have already

taken it up. ...

>

> ..., with a " clean " I-131 scan, lithium does not have any specific

indication. On the other hand, it would be critical to measure a 24-hour urine

specimen to be sure that the cause of the " clean " scan is not due to interfering

non-radioactive iodine.

>

> Thyroglobulin is a specific product of thyroid follicular cells, both normal

and malignant.

>

> The low iodine diet is important to optimize the sensitivity of I-131 scans

and the effectiveness of I-131 therapies.

>

> Unfortunately, I've seen too many references to the ficticious

" lifetime limit " of I-131.

>__________________________________________________________________

>It is a certainty that there is no concensus among nuclear medicine or

>endocrinology physicians regarding the proper dose of I-131 to use for

>treating thyroid cancer. Much of the reason for this is that most

>physicians base their treatment upon " custom " and previous modes of

>practice, particularly if they do not spend a significant portion of

>their professional time dealing specifically with thyroid cancer and do

>not actively do clinical or basic research in this field.

>

>

>It is my clinical practice to use 100 mCi as my " minimal " I-131 dose

>for initial ablation, using the clinical circumstances (defined by the

>tumor pathology and the whole body scan findings) to delineate which

>patient require higher doses (150 mCi or greater).

>

>Date: Thu, 08 Mar 2001 08:31:21 -0500

>

>Subject: Re: how often RAI

>___________________________________________________________________________

>

>+++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++\

++++++++++++++++++++++++++

>

> The following REPOSTS: are several from which the " one-liners " from above,

were taken. But are more fully expanded so as to identify the larger scope of

their intended meaning. ie. (within context)

>

> To answer 's question.. I must ask one... you are in need of

someone to repair your car. (shudder) Whom do you hier to do it? You ask for

references, of course. From family , friends.. people at work..? And what if the

person who's recommendation you choose doesn't possibly know how to evaluate

what was done for them?? You ask some questions and start to become

knowledgeable in that area of automobile technology that of which your auto

needs repair. You may find early on (many do) that either you understand about

this and you continue to learn or that it's best left to some whom you trust to

know and understand well enough in order to provide you with enough information

through which to make a proper decision relative to the needed auto repair.

Quite often.. those others providing information to you, know little or even

less as to the answer, then you do. But many times you don't know this about

_their_ evaluation strengths, either. And so you end up with either

an expensive bill or a lousy job. Or.. sometimes.. with BOTH! ... Or you can go

from shop to shop and talk with mechanic after mechanic until you're

blue-in-the-face. And at wits end, make a choice out of exasperation.. hoping

all the while that " things will just turn out ok. " Well, quite often.. they

simply just don't.

>Then you start the back and forth process of " I'm baaacck again, this being the

4th time for the same problem " " helllooo.. why didn't you fix it right in the

first place? etc. etc. " Until, either they finally " get it right " or until you

go elsewhere with both added expense and much more inconvenience to say the

least.

>

>

> " shopping around' for physicians at a time of need is no different in

circumstance. Only the details change. Instead of your car.. it's your body.

>One (doctor) says to " yank it' another tells you to " leave it alone and it

will be/do just fine, no cause for alarm " . And yet another tells you to " just

let us remove half of it because the other half isn't affected. (infected)

>

>

> Before having (letting) a physician attend me concerning ThyCa.. I would

first ask the questions basic to proper diagnostic technique relative to Thyca

management (scan's, timing & interval; " stunning " , tests for rapid I131

discharge, LID and " pushing water " . If the answers are unsatisfactory as to

what you learn here, on this List; if he get's upset and/or tries to intimidate

you or tells you " he's the boss!, end of discussion " You tell HIM that unless

or until he will avail himself of the information available to us here, this

List (Dr. Ain) that the " party's over " and you're going home.

>And get yourself another physician.. and another or another until you find one

who is medically competent to treat Thyroid Cancer.

>

> If he swallows his/her pride and consents to become finely educated in

proper management of thyroid cancer.. the you probably fare no worse than had

you just gone along with his treatment-plan(?) in the first place.

>

>

>

>

> Unfortunately, as it turns out... there is no apparent standard as an answer

to this question. The reason for it is this; not enough is known or understood

by most of those treating us for ThyCa. That is to say.. there are _several_

(many) basic questions that must be answered before a treatment plan can be

initiated for ThyCa cancer treatment and care. And a physician _must_ have

those answers.

>

>

Sincerely,

>

>

Nick

>_______________________________________________________________________________\

________________________________________________

>

>

> Many of those always around us, are these...

>

>Though Man a thinking being is defined,

>few use the grand prerogative of mind.

>How few think justly of the thinking few!

>How many never think, who think they do.

> Jane

.... Prejudice

>

>_______________________________________________________________________________\

________________________________________________

>

>

>

>

>

>At 11/13/01 09:05 PM, you wrote:

>>Nick,

>> I have a question that I'm sure is embarrassingly basic. So, rather than

asking the group I thought I'd bug you. (Goodness knows you don't contribute to

this group enough . I stopped my levoxyl today in preparation for a scan

scheduled Dec 19. My question is this, " Is it standard to give the tracer dose 7

whole days before the actual scan? My Endo was not very specific when requesting

these dates and it seemed to me it kinda just worked out that way. Well that's

it. Thank-you in advance for ALL your time. You are the best!

>>

>> Bergeron(age 24,Tampa FL)

>> elizabetholson0@...

>> that last 0 is a zero

>>

>>pap. thyca 11/00 (both lobes and extensive lymph nodes)

>>tt 12/00, RAI 175mCi 1/01

>>9/01 TSH 2.32, TG antibodies <2, TG 2.3 raised levoxyl from .125 to .137

results...

>>11/01 TSH .3 TG 1.9

>>currently going hypo for Dec 19 scan

>>

>>

>>

>

>