RE: Treatment after many, many years

May 23, 2001

LGPArker

Never ask a barber if you need a haircut...

but I think you need to see a good endocrinologist with experience in thyroid

cancer,

before you make any changes in that dose.

lgparker@... wrote:

> I'm new to the list, being referred by another person who is battling

> thyroid cancer.

>

> About 16 years ago I had surgery and radioactive iodine treatment for

> papillary carcinoma found in two areas. Since then, I've had annual

> visits to a specialist and have been realtively fine. The exception

> being that ever since my surgery I think my anxiety intensified.

> I've been taking systhroid, .15, the entire time. A couple of years

> ago, a doctor questioned why my thyroid levels were so high, and said

> that it could definitely add to my anxiety.

>

> I recently moved and now have a family physician who is part of an

> HMO. He doesn't want to refer me to a specialist, and said it was

> fine to lower my dosage of synthroid. Also, for the first time since

> my surgery, I am no longer having extensive blood tests done. Have

> any of you changed your dosage after a long time? Do you think it's

> ok to no longer see a specialist? Do you think there's any chance of

> a reoccurrance after so many years?

>

> For more information regarding thyroid cancer visit www.thyca.org. If you do

not wish to belong to this group, you may UNSUBSCRIBE by sending a blank email

to thyca-unsubscribe

>

May 23, 2001

Well, I had a recurrance after 11 years. I had changed doctors and

the new noticed I hadn't had a scan or Tg checked while hypo for 9

years, so I went hypo and when she checked my Tg while I was hypo, it

went up. ( It stayed low when I was suppressed) The subsequent scan

showed no uptake. I went ahead and had a treatment dose of 150. The 2

day post scan showed nothing either.. so I found out at that point I

was iodine resistant.. some on the list probably remember my shock.

So, yes, I do believe, from my own experience that you CAN have

recurrance after that long.

Also, have you ever had your Tg checked while hypo thru the years?

We have a very supportive group here so don't hesitate to ask away.

Bekki in TX; tt & rai'89; rai 7/00; mid-neck dissection; finished

EBR 5/01;; Tg will be tested with thyrogen on 6/15 so I have my

fingers crossed!!!!

2/01;

> Do you think there's any chance of

> a reoccurrance after so many years?

May 23, 2001

Thanks for the response. I've moved around during the last 12

years. Most recently I moved from ton, SC, where I was seeing

a doctor at the Medical University of South Carolina. He said that

if I were'nt moving I should have a scan. I haven't had one since

the treatment 16 years ago. I've resisted going hypo again. I

remember how bad it was. But now I hear that you don't have to go

without medication for a month like I did. Is that true?

Hearing from you really helps. I now know that I need to insist on

seeing a specialtist.

> > Do you think there's any chance of

> > a reoccurrance after so many years?

May 23, 2001

> I'm new to the list, being referred by another person who is battling

> thyroid cancer.

Welcome to the list! Want to tell us your name? We like to be a bit

personal here.

> I recently moved and now have a family physician who is part of an

> HMO. He doesn't want to refer me to a specialist, and said it was

> fine to lower my dosage of synthroid. Also, for the first time since

> my surgery, I am no longer having extensive blood tests done. Have

> any of you changed your dosage after a long time? Do you think it's

> ok to no longer see a specialist? Do you think there's any chance of

> a reoccurrance after so many years?

Your T4/Synthoid dose level controls your TSH (thyroid stimulating hormone)

level. If you reduce your Synthroid dose, your TSH will rise. For thyroid

cancer patients, TSH should usually be suppressed below " normal " levels, in

order to deter cancer recurrence. If suppressed too low, hyper symptoms can

result; over time, most of us find a T4 dose that balances cancer management

w/ feeling good. I assume your specialist was testing your blood for TSH &

keeping your Synthroid at the proper level for you. Your thyroglobulin

level should also be monitored via regular blood tests, to watch for

recurrence.

It sounds to me like this new doc doesn't understand thyroid cancer. You

need an endo, & one who has thyroid cancer experience to monitor you, for

the rest of your life.

Yes, thyroid cancer CAN & DOES recur after 16 years. We frequently see

people on this list who have had something like that happen.

I will copy below some relevant messages posted here by a doctor who

specializes in thyroid cancer.

I urge you to insist on proper medical care.

Nina

geiger@...

--It is very possible that there might be a " small amount of thyroid cancer

left behind ... that may not show up as an increase thyroglobulin or a

positive scan " . This is the basis and rationale for life-long follow-up of

thyroid cancer patients. Such small, subclinical and immeasurable tumor may

or may not eventually grow sufficient to be detected or to cause disease

progression or recurrences. This sometimes happens several decades after the

original surgery. This feature is the reason why I only know that someone is

" cured " of their cancer AFTER they've died of old age.--Dr. Ain, 3-01

--It is my practice and teaching to maintain TSH values in my thyroid cancer

patients to less than 0.10 mU/L. TSH is clearly a growth factor for thyroid

cancer cells, although extremely aggressive varieties grow well

independently of TSH. The most recent, well done study supports this

practice [Pujol P, Daures J-P, Nsakala N, Baldet L, Bringer J, Jaffiol C.

1996 Degree of thyrotropin suppression as a prognostic determinant in

differentiated thyroid cancer. J Clin Endocrinol Metab. 81:4318-4323]. The

reason for this is consequent to known features of the cell biology of

thyroid cancer cells as well as clinical epidemiological evidence as above.

It is easily done with careful titration of the levothyroxine dose, good

compliance by the patient, and careful follow-up. In less than 10% of

patients, a small dose of a beta-blocker, to counteract an increased heart

rate, may be useful. Recent studies have shown that a careful TSH

suppression, as described, does not significantly increase bone loss

[Marcocci C, Golia F, Bruno-Bossio G, Vignali E, Pinchera A. 1994 Carefully

monitored levothyroxine suppressive therapy is not associated with bone loss

in premenopausal women. J Clin Endocrinol Metab. 78:818-823]. There is no

significant side effect when done carefully in most patients.

This is to be considered " standard of care. " Unfortunately, the " art of

medicine " is sometimes too artful and subjective.-- B. Ain, M.D.

thyca 6-99

--The mean " replacement dose " of levothyroxine (to obtain a normal TSH

0.5-4.0) is 1.6 micrograms per kilogram per day. The mean " suppression

dose " of levothyroxine (to suppress TSH less than 0.1) is 2.0 micrograms per

kilogram per day.

There is a wide variation in individual patients so that these mean

values are only starting approximations for estimating levothyroxine

dosages. Following at least 6-8 weeks of such medication, the TSH

and free T4 should be checked to see if the suppression target has

been reached: TSH < 0.1 while the free T4 not much above the upper

normal limit. If a levothyroxine dosage needs to be changed, then

another 6-8 weeks must be waited before checking the labs again. ...--Dr.

Ain

--The thyroglobulin serves as a tumor marker for the presence of

differentiated thyroid carcinoma, only in the context of previous total

thyroidectomy and radioiodine ablation therapy. This protein is a product of

the thyroid cancer cell. When the cell is stimulated by high levels of TSH

(when hypothyroid) it may produce more thyroglobulin. When the cell is not

exposed to TSH (when on levothyroxine therapy) it often produces little or

no thyroglobulin. For this reason, any thyroglobulin which is measurable

when taking levothyroxine (usually above 2-3 ng/mL) is significant for

persistent or recurrent cancer. When taking levothyroxine, there may be

thyroid cancer cells present, but the low TSH levels do not permit them to

release much thyroglobulin. On the other hand, when hypothyroid (TSH levels

greater than 30), these cells are more likely to release enough

thyroglobulin to be measured in the blood (usually greater than 5 ng/mL). In

theory, patients with complete absence of thyroid cancer cells should have

undetectable thyroglobulin levels (less than or equal to 1.0), both while

hypothyroid and while on thyroid hormone. Thus, thyroglobulin assessments

are more sensitive when hypothyroid, but meaningful if elevated whether on

or off thyroid hormone. Thyroglobulin is an independent marker for the

presence of residual thyroid cancer. Sometimes, the I-131 whole body scan is

negative although the thyroglobulin level is elevated (above 5-8 ng/mL). In

this situation, the patient has residual thyroid cancer, even though it is

not evident on the scan. Frequently, such a person may have a positive

response to I-131 therapy (> 150 mCi dose) with a positive post-therapy scan

and decreased follow-up thyroglobulin levels. Sometimes such a patient does

not have a

response to radioiodine, indicating dedifferentiated tumor that no longer

takes up iodine. This type of patient is one of the topics of research in

our laboratory since new and different approaches are likely to be

needed. -- B. Ain, M.D.

May 23, 2001

Hi,

Welcome to Thyca!!

Clearly you need the input of an endocrinologist on this situation. Too

often we read about doctors who just don't understand about suppression

of the TSH for thyroid cancer patients or the importance of

thyroglobulin for a cancer marker.

What is not clear from your information is what your TSH is. It is

possible to reduce medication and keep a patient in suppression but

given who is making the change, I would guess he doesn't know the first

thing about TSH suppression. It is imperative to have annual blood

tests for TSH and thyroglobulin. Recurrence has been known to occur as

much as 40 years later so the chance is always there. Monitoring is

necessary for the remainder of your life.

If your doctor doesn't understand all this (you need to ask him)

suggest to him that he read the American Thyroid Association website to

learn about it. www.thyroid.org.

Best wishes,

Gail

dx:1968,TT,pap. & foll. well differentiated, RAI, rad.neck

dissection, lung surgery, hashimoto, iodine resistant,

existing thyca nodules in lungs. Last surgery 1972

> I'm new to the list, being referred by another person who is battling

> thyroid cancer.

>

> About 16 years ago I had surgery and radioactive iodine treatment for

> papillary carcinoma found in two areas. Since then, I've had annual

> visits to a specialist and have been realtively fine. The exception

> being that ever since my surgery I think my anxiety intensified.

> I've been taking systhroid, .15, the entire time. A couple of years

> ago, a doctor questioned why my thyroid levels were so high, and said

> that it could definitely add to my anxiety.

>

> I recently moved and now have a family physician who is part of an

> HMO. He doesn't want to refer me to a specialist, and said it was

> fine to lower my dosage of synthroid. Also, for the first time since

> my surgery, I am no longer having extensive blood tests done. Have

> any of you changed your dosage after a long time? Do you think it's

> ok to no longer see a specialist? Do you think there's any chance of

> a reoccurrance after so many years?

May 23, 2001

You are talking about Thyrogen.. ( someone one the list who is a

better filer than me can give you their webpage) I went through the

same kind of thought process.. I so didn't wan't to go hypo again ( I

have a very bad time with it) and my doctor offered the thyrogen scan

( you don't have to go off meds),. But, after weighing out all the

facts, I decided to go the hypo route. Thyrogen is used by some

after 2 clean scans, however, since it had been so long, I decided

against it. I knew I wanted to know for sure, without a doubt

because I wasn't planning on doing it again for a long, long time. If

I used thyrogen and it came back clean, I didn't want to have to

wonder if it would have come back clean if I had gone hypo. It is

something you will have to play the pros and cons on and decide what

you are comfortable with. Take care, Bekki in TX

....

I've resisted going hypo again. I

> remember how bad it was. But now I hear that you don't have to go

> without medication for a month like I did. Is that true?

>

May 23, 2001

I am a newbee to thyroid cancer as well but in my brief two month journey

into this new world I would say not only do you need an endocrinologist but

one who is very experienced in thyroid cancer. My original endo missed the

boat after nearly two years of following my case. My new endo is so thorough

and knowledgable. He also asked me during my second visit if I had all my

questions answered! Imagine that! When I asked him about his knowledge of

thyroid cancer he said that he just got back from a thyroid cancer semiar at

Mayo Clinic and had lots of articles he has been reading in addition to the

numbers of patients he sees per week. I felt very very comfortable with his

knowledge, way of relating, and his willingness to consult with my surgeon.

Jan

May 23, 2001

Hi lgparker,

I'm new to the list, too, but not to thyroid cancer. Yes, it can

return after all those years. Mine returned after 17 years. I

didn't think of myself as " living with cancer " like a nurse said

to me upon my admission for RAI. In my opinion, you do need an

endocrinologist who knows lots about ThyCa and it's treatment.

My dose of Synthroid has been changed over the years, but not

without first checking my TSH level, and then checking it again

after 6-8 weeks on the new dose.

=====

...

3/25/65 tt Papillary ThyCa w/lymph node mets

HPTH 3 days post radical tt

3/25/82 Recurrence in neck/ & R chest

Tx w/RAI 131 176 mCi

hx kidney stones

__________________________________________________

May 24, 2001

I'm not new to thyca but new to this group. I subscribed for a couple of

weeks in the fall and then had computer trouble. I was originally

diagnosed with thyroid cancer in 1975. Had a pt on left, no radiation,

have taken thyroid medication regularly since and have had yearly blood

tests with my family dr. Levels of medication have fluctuated through the

years. In 1998 I had a recurrence of thyca and had a full thyroidectomy

and lymph nodes removed, parathyroid replacment, followed up with isolation

for 3 days during my radiation treatment. Had scan, went hypo again in

1999 and in 2000 did the thyrogen. That was wonderful. Scheduled for

another scan in June, doing thyrogen again. Did have a needle biopsy which

came back negative prior to my 2nd surgery. But I told the doctor

something wasn't right. He was amazed to find the cancer. He specialized

in throat and neck cancer and surgery in St Louis, Mo.

I would definitely recommend continuing with the yearly blood tests to

check your levels.

Good to be here!

tmissey - bcb300@...

> [Original Message]

>

> To: <Thyca >

> Date: 5/23/01 2:50:24 PM

> Subject: Treatment after many, many years

>

> I'm new to the list, being referred by another person who is battling

> thyroid cancer.

>

> About 16 years ago I had surgery and radioactive iodine treatment for

> papillary carcinoma found in two areas. Since then, I've had annual

> visits to a specialist and have been realtively fine. The exception

> being that ever since my surgery I think my anxiety intensified.

> I've been taking systhroid, .15, the entire time. A couple of years

> ago, a doctor questioned why my thyroid levels were so high, and said

> that it could definitely add to my anxiety.

>

> I recently moved and now have a family physician who is part of an

> HMO. He doesn't want to refer me to a specialist, and said it was

> fine to lower my dosage of synthroid. Also, for the first time since

> my surgery, I am no longer having extensive blood tests done. Have

> any of you changed your dosage after a long time? Do you think it's

> ok to no longer see a specialist? Do you think there's any chance of

> a reoccurrance after so many years?

>

> For more information regarding thyroid cancer visit www.thyca.org. If

you do not wish to belong to this group, you may UNSUBSCRIBE by sending a

blank email to thyca-unsubscribe

>

May 31, 2001

Nina,

I'm a little slow in keeping up with the list... Anyway,

> > I'm new to the list, being referred by another person who is

battling

> > thyroid cancer.

>

> Welcome to the list! Want to tell us your name? We like to be a

bit

> personal here.

My name is , and, for a few more details, I had multifocal

papillary carcinoma with two surgeries and radioactive iodine

treatment in 1986 at Stanford Medical Center. I was in my 20's when

my gynocologist first discovered noduels on my thyroid.

I wanted to thank you for the great information! Years ago when I had

my surgery,I didn't have access to the internet.

Today I saw my doctor and finally was able to get a referral to a

specialist. Without the input from all of you, I don't know that I

would have pushed the issue like I did. My synthroid was lowered

about 3 weeks ago. At that time my TSH was at .04. Now after three

weeks, the TSH is still at .04. The doctor suggested lowering my

dose again. Initially the dose was .15, then .1375. I thought that

my body may not have had enough time to adjust to the lowered dose.

He told me that a couple of weeks were enough. I said that I'd like

to remain at the current dose for another month and then be seen by a

specialist. He said it was fine to decrease my synthroid so that my

TSH was in the normal range. I don't think so!! Well, the good news

is that I will be seeing a specialist in July.

I thought is was odd that I remained on the same dose of synthroid

for years and my TSH was stable, but now it has changed. Has anyone

experienced that?

May 31, 2001