World's worst Endo!!! Lots of ???!

[Guest guest]

I was diagnosed with Thyroid Cancer late June, had the Total

Thyroidectomy early July. Late July I finally obtained an

Endocrinologist and I hate him. He spoke so fast with a very thick

Hebrew accent and if it weren't for my Jewish boyfriend who was in

the room, he wouldn't have had anyone to talk to. It was obvious to

me that I, chart #12345 was not important enough for even eye

contact. I can't understand my doctor so I have been trying to get

through this via the internet. And yes, I tried to change doctors,

but it is extremly difficult to find an Endo in Las Vegas because of

some recent issues we have had regarding malpractice insurance

prices.

Endo-jerk put me on Cytomel (post-op) and I have been on it for the

past 6 weeks. I went in for some blood tests he ordered and found

that my TSH level was at a .04. I was happy because I thought we

were trying to throw me into a hypo-thyroid state. I certainly feel

hypo enough by now!!! But then I did some internet research and

found that all the sites state that I need to have HIGH TSH.

And now that I have vented, here are my questions.

??? Why would I need to have my thyroid suppressed if I don't even

have a thyroid any more?

??? What is Cytomel's function?

??? Has anyone else out there had this same treatment?

??? Now that I have such a low TSH, how long do I have to go until I

have a high enough TSH for treatment?

??? Will I feel worse (sluggish, muscle pains, grouchy, etc) than I

feel now as my TSH rises?

??? How high does my TSH need to be to recieve my RAI treatment?

??? How often do I need to get RAI treatments?

??? Does the scan they do cover the entire body?

??? Has anyone experienced loss of vocal range post-op?

??? How long did it last?

And last, but certainly not least...

??? I live in a VERY small mining town, the entire county only has

around 8,000 people. Including myself I know of 6 people who have

been diagnosed and treated for thyroid cancer in the past year.

That's a big per-capita number. There are already studies that

indicate that people who lived in this county in the 1950's and 60's

might have a higher concern for cancer due to the mining activities.

Does anyone know what the main cause of thyroid cancer is? Or,

where can I get studies on causes of thyroid cancer?

Much Thanks for any help you can give.

~Valeri~

06/26/03 Diagnosed Papillary Thyroid Cancer

07/07/03 Total Thyroidectomy

[Guest guest]

Hi, Valeri, and welcome -

>

> Endo-jerk put me on Cytomel (post-op) and I have been on it for the

> past 6 weeks. I went in for some blood tests he ordered and found

> that my TSH level was at a .04.

But was this while you were still on Cytomel, or after you were taken

off of it? You should be OFF cytomel for the last 2 weeks (and

following a LID -low iodine diet). The TSH test needs to be during

that 2nd week off all meds so the Cytomel has gotten out of your system

> ??? Why would I need to have my thyroid suppressed if I don't even

> have a thyroid any more?

The idea is to suppress any possible microscopic cancerous thyroid

tissue cells that may still be around after the RAI

> ??? What is Cytomel's function?

It is a short acting hormone who's function for us is offset the

symptoms of being hypo while we are weaning off T4 before a

scan/ablation or waiting for the T4 to get back into our systems. T3

(Cytomel) is actually the hormone your body produces from the T4 the

thyroid makes (and we take artificially). It takes about 6-8 weeks

for the T4 to get in and out fully, but just 2 weeks with Cytomel.

> ??? Has anyone else out there had this same treatment?

Most of us on this group have :-)

> ??? Now that I have such a low TSH, how long do I have to go until I

> have a high enough TSH for treatment?

If you were till on Cytomel, it will hopefully rise in the next few weeks.

> ??? Will I feel worse (sluggish, muscle pains, grouchy, etc) than I

> feel now as my TSH rises?

It's a good bet that you'll at least be more tired. How we feel while

hypo varies a LOT from person to person. A small percent barely

notice they're hypo, a small percent are miserable, and the rest of us

are inbetween.

> ??? How high does my TSH need to be to recieve my RAI treatment?

Most doctors want it over 30 before a scan/treatment..some over 50.

You'll need to check with your doctor about what they'll require

> ??? How often do I need to get RAI treatments?

Hopefully just once, You'll have a scan 6 months to a year later, and

if they don't see any thyroid tissue in your body, you won't need

another treatment..if they do, you probably will. I had just one

treatment

> ??? Does the scan they do cover the entire body?

Yep. You'll lie on a table and a camera will scan your body. You

have to stay relatively still while it's being done. My last scan,

they were nice enough to turn the radio to a station I liked and I

just closed my eyes and listened (I promised them I wouldn't tap my

feet :-))

> ??? Has anyone experienced loss of vocal range post-op?

> ??? How long did it last?

I didn't - others have (hopefully they'll write in), and it's usually

temporary.

> Does anyone know what the main cause of thyroid cancer is?

Most of us just don't know. They do know that being exposed to

radiation (like living downwind from a nuclear plant), or having

x-ray treatments (not normal x-rays), can cause it. Personally, while

it would be interesting to know, I don't really dwell on it.

Cheers,

Alisa

Currently - TSH 0.02, 140mcg Levoxyl

2/15/2002: Nodule found 2/27/2002: FNA

3/4/2002: Hysterectomy/oopherectomy-possible ovarian cancer - BENIGN!!

4/9/2002: TT - Stage 2 pap 2.5 x 2 x 1.6 cm nodule, dx Hashimotos

5/28/2002: 100 mCi RAI

12/16/02: WBS (5 mCi): clean scan - no thyroid tissue in body!!!

Age: 49 -- Location: near Seattle WA --- Check out my posts:

Radioactive Girl - http://groups.yahoo.com/group/Thyca/message/19472

My LID - http://groups.yahoo.com/group/Thyca/message/15872

My RAI - http://groups.yahoo.com/group/Thyca/message/15873

LID stuff - http://groups.yahoo.com/group/Thyca/message/25430

[Guest guest]

Hi. I live in Vegas, and while I'm at about the same stage you are, I

may be able to help you some. I'm guessing you're probably up in

Elgin or Beatty area? Some stuff is my own experiences and some I

learned here on this site. I won't bother re-stating the good answers

you've already gotten here.

> And yes, I tried to change doctors,

> but it is extremly difficult to find an Endo in Las Vegas because

of

> some recent issues we have had regarding malpractice insurance

> prices.

* * * * * *

I checked the phone book. There are about a dozen endos in town. When

it becomes reasonable to do so, don't give up on trying to find

another one. Your's does sound lousy!!

> Endo-jerk put me on Cytomel (post-op) and I have been on it for the

> past 6 weeks. I went in for some blood tests he ordered and found

> that my TSH level was at a .04. I certainly feel > hypo enough

by now!!!

* * * * *

Me too. I was on Cytomel for 2 or 3 weeks, had a ton of hypo symptoms

and only a couple of hyper. I was shocked to find my TSH was at .05!

>

> ??? Has anyone else out there had this same treatment?

* * * *

See above.

> ??? Now that I have such a low TSH, how long do I have to go until

I

> have a high enough TSH for treatment?

* * * * *

YMMV (Your Millage May Vary) You'll see this used frequently because

it's so true. That being said, I went on 1/2 doses of Cytomel for 1

week, none for 1 more week and my 1st test came back at 66.3! I can't

promise anything since I've been a medical oddity numerous times,

ever since about the age of 2! :-)

> ??? Will I feel worse (sluggish, muscle pains, grouchy, etc) than

I

> feel now as my TSH rises?

* * * * *

Some do, some don't. I do, but I also have several other medical

conditions at this time. We're not sure what is causing what some

days. Even I have moments when I feel somewhat better, at least for a

few hours. Try to make the most of them, I do!!

> ??? How high does my TSH need to be to recieve my RAI treatment?

* * * * *

Again, it varies. The norm out here, especially if you're going to

Sunrise, is over 50. What hosp. are you going to? My endo leaves the

final decision up to the nuke med doc.

> ??? I live in a VERY small mining town, the entire county only has

> around 8,000 people. Including myself I know of 6 people who have

> been diagnosed and treated for thyroid cancer in the past year.

> That's a big per-capita number. There are already studies that

> indicate that people who lived in this county in the 1950's and

60's

> might have a higher concern for cancer due to the mining activities.

> Does anyone know what the main cause of thyroid cancer is? Or,

> where can I get studies on causes of thyroid cancer?

* * * * *

The only studies I've seen are for other types of cancer (like

the " Lukemia Kids " in Fallon) and are in regards to the above-ground

nuclear testing they did around Tonopah. It's my understanding that

the only 2 ways to get Thyca are: 1. Exposure to radiation and 2. A

family history of thyroid problems and cancer (that appears to be my

case). Research it for curiousity's sake but don't let it get you

obsessed with it. We've got it, we'll get thru it! Feel free to cry

or complain, whichever mood hits you. I know I do! Even my hubby just

tells people " Yep. My wife's hypo. She'll get back to what passes for

normal for her, one of these days! " I'm still having a strange mix of

hypo/hyper symptoms. I've been incredibly dizzy the past week,

weaving and walking into things. He comes home from work and tells me

which 2 directions my eyes are pointing in that day! lol

I go for my RAI this Weds. (finally!), so I'm starting to see a

glimmer of light at the end of the tunnel. Feel free to e-mail me, if

you'd like. Good luck and know you found the right site for Thyca-

pals!

Donna

/\ /\

" "

>*<

[Guest guest]

Regarding thyroid cancer in Nevada:

I found this at http://www.usdoj.gov/civil/torts/const/reca/

(Radiation Exposure Compensation Program):

Downwinders. The Act specifies a payment of $50,000 to an individual

who was physically present in one of the affected areas downwind of

the Nevada Test Site during a period of atmospheric nuclear testing,

and later contracted a specified compensable disease.

A. Exposure. The claimant must have lived or worked downwind of

atmospheric nuclear tests in certain counties in Utah, Nevada and

Arizona for a period of at least two years during the period

beginning on January 21, 1951, and ending on October 31, 1958, or,

for the period beginning on June 30, 1962, and ending on July 31,

1962. The designated affected areas are: in the State of Utah, the

counties of Beaver, Garfield, Iron, Kane, Millard, Piute, San ,

Sevier, Washington, and Wayne; in the State of Nevada, the counties

of Eureka, Lander, Lincoln, Nye, White Pine, and that portion of

County that consists of townships 13 through 16 at ranges 63

through 71; and in the State of Arizona, the counties of Apache,

Coconino, Gila, Navajo, and Yavapai.

B. Disease. After such period of physical presence, the claimant

contracted one of the following specified diseases: leukemia (other

than chronic lymphocytic leukemia), lung cancer, multiple myeloma,

lymphomas (other than Hodgkin's disease), and primary cancer of the

thyroid, male or female breast, esophagus, stomach, pharynx, small

intestine, pancreas, bile ducts, gall bladder, salivary gland,

urinary bladder, brain, colon, ovary, or liver (except if cirrhosis

or hepatitis B is indicated).

The National Cancer Institute's report on risks of thyroid cancer

related to nuclear fallout (including Nevada bomb test site)can be

found at http://rex.nci.nih.gov/massmedia/Fallout/contents.html.

Teri

>

> ??? I live in a VERY small mining town, the entire county only has

> around 8,000 people. Including myself I know of 6 people who have

> been diagnosed and treated for thyroid cancer in the past year.

> That's a big per-capita number. There are already studies that

> indicate that people who lived in this county in the 1950's and

60's

> might have a higher concern for cancer due to the mining

activities.

> Does anyone know what the main cause of thyroid cancer is? Or,

> where can I get studies on causes of thyroid cancer?

>

> Much Thanks for any help you can give.

>

> ~Valeri~

>

> 06/26/03 Diagnosed Papillary Thyroid Cancer

> 07/07/03 Total Thyroidectomy