Re: Does this sound like bad advice?

[Guest guest]

Taya,

I can't respond to the TSH level question, but I can speak to the

ultrasound issue. After my initial radioactive iodine treatment I asked if

I could, rather than repeating this, do regular ultrasounds, given that my

papillary nodule was encapsulated and my risk was generally low. My endo.

agreed to this, and said it was a common practice for people with my

diagnosis. I feel, personally, quite confident in this kind of neck

inspection.

Gwen

At 06:41 PM 1/7/2003 +0000, you wrote:

>After waiting seven months for an appointment with my

>endochrinologist since my last surgery, I saw him last week. He told

>me that my TSH level was fine. It is currently at 0.12. When I

>asked, " shouldn't it be under 0.1? " , he said it was close enough. I

>then told him that I had gained about 25 pounds since I had surgery

>and went on 150 mcg of Levoxyl. He told me to join a gym and that it

>was hard for pharmacies to get the 167 mcg of Levoxyl so he would

>keep me at my present dosage. He then told me to come back in March

>for another appointment and said I should get some blood work done

>while I was there. Since he didn't bring it up, I asked him if I

>should be getting a scan done - perhaps in April since it will be 1

>year since my last surgery. He told me that it was very unlikely

>that I would have a recurrance and that it wasn't necessary and not

>worth going off my medication for six weeks. But I could go for an

>ultrasound at some point before April. Now, this is the same guy who

>told me I should wait six months and see if the nodule on my thyroid

>gets any bigger, and that I had follicular cancer which was later

>diagnosed after the first surgery as papillary cancer. I am trying

>to get a second opinion of treatment from another endo in my area,

>but it's close to impossible to get appointments with these doctors.

>Has anyone had a similar experience, what did you do?

>

>Taya

>PT 11/01

>Dx: Papillary Cancer and Hashimoto's disease

>TT 4/02

>150 mcg Levoxyl

>

>

>

[Guest guest]

Taya,

Did you have RAI after your last surgery? And are you being followed

for Tg and TgAB?

Judith (British living in Holland)

dx 1965 pap thyca T4-N1-M0

> After waiting seven months for an appointment with my

> endochrinologist since my last surgery, I saw him last week. He

told

> me that my TSH level was fine. It is currently at 0.12. When I

> asked, " shouldn't it be under 0.1? " , he said it was close enough. I

> then told him that I had gained about 25 pounds since I had surgery

> and went on 150 mcg of Levoxyl. He told me to join a gym and that

it

> was hard for pharmacies to get the 167 mcg of Levoxyl so he would

> keep me at my present dosage. He then told me to come back in March

> for another appointment and said I should get some blood work done

> while I was there. Since he didn't bring it up, I asked him if I

> should be getting a scan done - perhaps in April since it will be 1

> year since my last surgery. He told me that it was very unlikely

> that I would have a recurrance and that it wasn't necessary and not

> worth going off my medication for six weeks. But I could go for an

> ultrasound at some point before April. Now, this is the same guy

who

> told me I should wait six months and see if the nodule on my thyroid

> gets any bigger, and that I had follicular cancer which was later

> diagnosed after the first surgery as papillary cancer. I am trying

> to get a second opinion of treatment from another endo in my area,

> but it's close to impossible to get appointments with these doctors.

> Has anyone had a similar experience, what did you do?

>

> Taya

> PT 11/01

> Dx: Papillary Cancer and Hashimoto's disease

> TT 4/02

> 150 mcg Levoxyl

[Guest guest]

Taya,

Did you have RAI after your last surgery? And are you being followed

for Tg and TgAB?

Judith (British living in Holland)

dx 1965 pap thyca T4-N1-M0

> After waiting seven months for an appointment with my

> endochrinologist since my last surgery, I saw him last week. He

told

> me that my TSH level was fine. It is currently at 0.12. When I

> asked, " shouldn't it be under 0.1? " , he said it was close enough. I

> then told him that I had gained about 25 pounds since I had surgery

> and went on 150 mcg of Levoxyl. He told me to join a gym and that

it

> was hard for pharmacies to get the 167 mcg of Levoxyl so he would

> keep me at my present dosage. He then told me to come back in March

> for another appointment and said I should get some blood work done

> while I was there. Since he didn't bring it up, I asked him if I

> should be getting a scan done - perhaps in April since it will be 1

> year since my last surgery. He told me that it was very unlikely

> that I would have a recurrance and that it wasn't necessary and not

> worth going off my medication for six weeks. But I could go for an

> ultrasound at some point before April. Now, this is the same guy

who

> told me I should wait six months and see if the nodule on my thyroid

> gets any bigger, and that I had follicular cancer which was later

> diagnosed after the first surgery as papillary cancer. I am trying

> to get a second opinion of treatment from another endo in my area,

> but it's close to impossible to get appointments with these doctors.

> Has anyone had a similar experience, what did you do?

>

> Taya

> PT 11/01

> Dx: Papillary Cancer and Hashimoto's disease

> TT 4/02

> 150 mcg Levoxyl

[Guest guest]

Taya,

The fact that your nodule was encapsulated is good but more

importantly, what was the size of that nodule? Nodule's under 1cm are

sometimes removed with no RAI follow up. Anything 1 cm or above needs

RAI. Did you have RAI?

Your tsh is close to suppression. But the issue is really how you

feel? People can be at 0.1 and feel crummy or great! If you still

don't feel well then the tsh can be brought slightly lower like to

0.08 or .05. Doctors who are unwilling to fine tune medication this

way are not considering the full scope of the patients situation.

Additionally, do you know if your antibodies have abated. Hahimoto

antibodies can persist thus not giving the doctor accurate information

off the thyroglobulin test. The antibodies make the test inaccurate.

This would be another reason to be scanned. If they can't look for

recurrance through your tg then a scan after one year is appropriate.

I happen to believe it's appropriate under any circumstances, but

that's just my opinion.

That is nonsense about the difficulty in getting a higher dose. All

the doctor had to do was prescibe one of the small doses in addition

to your .15 and give you a daily dose adjustment. Some people increase

their dose only 2x a week, others do it every other day.

Do not give up on seeking another opinion.

Gail

dx: 1968, TT, pap. & foll. well differentiated

w/hurthle cell, RAI, rad.neck dissection,lung surgery,

hashimoto, tg antibody 575, iodine resistant,existing

thyca nodules in lungs. Last surgery 1972

> >After waiting seven months for an appointment with my

> >endochrinologist since my last surgery, I saw him last week. He told

> >me that my TSH level was fine. It is currently at 0.12. When I

> >asked, " shouldn't it be under 0.1? " , he said it was close enough. I

> >then told him that I had gained about 25 pounds since I had surgery

> >and went on 150 mcg of Levoxyl. He told me to join a gym and that it

> >was hard for pharmacies to get the 167 mcg of Levoxyl so he would

> >keep me at my present dosage. He then told me to come back in March

> >for another appointment and said I should get some blood work done

> >while I was there. Since he didn't bring it up, I asked him if I

> >should be getting a scan done - perhaps in April since it will be 1

> >year since my last surgery. He told me that it was very unlikely

> >that I would have a recurrance and that it wasn't necessary and not

> >worth going off my medication for six weeks. But I could go for an

> >ultrasound at some point before April. Now, this is the same guy who

> >told me I should wait six months and see if the nodule on my thyroid

> >gets any bigger, and that I had follicular cancer which was later

> >diagnosed after the first surgery as papillary cancer. I am trying

> >to get a second opinion of treatment from another endo in my area,

> >but it's close to impossible to get appointments with these doctors.

> >Has anyone had a similar experience, what did you do?

> >

> >Taya

> >PT 11/01

> >Dx: Papillary Cancer and Hashimoto's disease

> >TT 4/02

> >150 mcg Levoxyl

>

>

>

[Guest guest]

Hi,

you doctor kinda sounds similar to my ENT doctor. I went in to see

him in Feb of 2000 because my general physician felt a lump in my

thyroid I went through the ultra sound and all that and the ENT

doctore told me it was a goiter nothing to worry about told me to

come back in 6 month and sent me on my way. Well I came back in 6

month and had another ultrasound he told me it was still a goiter

becuase it hadn't grown so it wasn't cancer. But my mom insisted on

them doing an FNA so they did and sure enough it was cancer. Well

after that I had the endo from hell he was so cold and mean. I only

saw him once. After that I went to my general doctor and had him do

my blood work and adjust my dosage of my meds. Well the thing about

general doctors they don't know much about thyroid cancer so he was

really slow on uping my dosages. All this time I was questioning a

lump on the side of my neck and I even asked the endo about it he

said it was just draining fluid even though I told him it has been

there for a long time. Well I year went by and on my own I asked

my doctore to set up and ultrasound. So I went and sure enough it

was more cancer on the side of my neck so I had to have a radical

neck disection done. they remove 19 lymph nodes and 1 of my jugular

vains. Now I have a new endo she is great I had jump from 175 to 250

to 300 mg of synthroid in 6 month I feel alot better my TSH is

supressed but still don't have all my energy back. Well that's my

sorry I hope I didn't bore you see ya bubhye.

-Theresa

TT1 11/00

RAI 1/01

Rad. Neck Disection 10/01

RAI 7/02

> After waiting seven months for an appointment with my

> endochrinologist since my last surgery, I saw him last week. He

told

> me that my TSH level was fine. It is currently at 0.12. When I

> asked, " shouldn't it be under 0.1? " , he said it was close enough.

I

> then told him that I had gained about 25 pounds since I had

surgery

> and went on 150 mcg of Levoxyl. He told me to join a gym and that

it

> was hard for pharmacies to get the 167 mcg of Levoxyl so he would

> keep me at my present dosage. He then told me to come back in

March

> for another appointment and said I should get some blood work done

> while I was there. Since he didn't bring it up, I asked him if I

> should be getting a scan done - perhaps in April since it will be

1

> year since my last surgery. He told me that it was very unlikely

> that I would have a recurrance and that it wasn't necessary and

not

> worth going off my medication for six weeks. But I could go for

an

> ultrasound at some point before April. Now, this is the same guy

who

> told me I should wait six months and see if the nodule on my

thyroid

> gets any bigger, and that I had follicular cancer which was later

> diagnosed after the first surgery as papillary cancer. I am

trying

> to get a second opinion of treatment from another endo in my area,

> but it's close to impossible to get appointments with these

doctors.

> Has anyone had a similar experience, what did you do?

>

> Taya

> PT 11/01

> Dx: Papillary Cancer and Hashimoto's disease

> TT 4/02

> 150 mcg Levoxyl

[Guest guest]

It is currently at 0.12. When I

> asked, " shouldn't it be under 0.1? " , he said it was close enough.

I

> then told him that I had gained about 25 pounds since I had surgery

> and went on 150 mcg of Levoxyl. He told me to join a gym and that

it

> was hard for pharmacies to get the 167 mcg of Levoxyl so he would

> keep me at my present dosage.

I'll join the chorus of " you don't have to take the same dose every

day to end up with the right dose "

I'm a 150 a day with 1/2 on sundays for a dose of 139.28 which is

just perfect for me..

he could get you close to 167 by doing 175 each day and 1/2 on

sunday . that's an effective dose of 162.5 per day averaged over the

week.

Join a gym.. yeah that's sympathetic medical care.. argghhh... if we

could be the Thyca jury.. we could sentence him to a month of being

hypo and then challenge him to lose weight while on levoxyl (it can

be done but it takes a lot more concentration)

barb

tt 8/99 RAI 4/00 Clean Scans 12/00, 5/02

[Guest guest]

I keep seeing postings about Hashimoto's disease. What is it?

Thanks,

SoCal

TT: 1-9103

[Guest guest]

I keep seeing postings about Hashimoto's disease. What is it?

Thanks,

SoCal

TT: 1-9103

[Guest guest]

> I keep seeing postings about Hashimoto's disease. What is it?

>

> Thanks,

> SoCal

> TT: 1-9103

Hashimoto's thyroiditis is an immune system disease - a chronic

inflammation of the thyroid. Our bodies usually produce antibodies

to fight things that invade it, but with Hashi's, the immune system

produces antibodies that attack and damage our own thyroid gland. It's

more common in women, and more common as we age.

Most people with Hashi's eventually will need to take T4, because

their thyroids stop functioning.

For those of us with Hashi's who have thyca, it affects us in this

way (obviously we have to take T4 anyway :-)):

The thyroglobulin (TG) test is used as a cancer marker. Only healthy

or cancerous thryoid tissue can produce TG. So, after surgery and RAI

ablation to kill the rest of our thyroid, our bodies shouldn't produce

it anymore. Our TG levels should be unmeasurable.

However, if our bodies are still producing these antibodies (Anti-TG

or TgAb), they can interfere with the TG test, and make it in

accurate.

Cheers,

Alisa

Currently - 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: WBS (2 mCi) and 100 mCi RAI --- 6/6/2002: WBS - No mets

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 thoughts, tips, ideas -

http://groups.yahoo.com/group/Thyca/message/25430

[Guest guest]

> I keep seeing postings about Hashimoto's disease. What is it?

>

> Thanks,

> SoCal

> TT: 1-9103

Hashimoto's thyroiditis is an immune system disease - a chronic

inflammation of the thyroid. Our bodies usually produce antibodies

to fight things that invade it, but with Hashi's, the immune system

produces antibodies that attack and damage our own thyroid gland. It's

more common in women, and more common as we age.

Most people with Hashi's eventually will need to take T4, because

their thyroids stop functioning.

For those of us with Hashi's who have thyca, it affects us in this

way (obviously we have to take T4 anyway :-)):

The thyroglobulin (TG) test is used as a cancer marker. Only healthy

or cancerous thryoid tissue can produce TG. So, after surgery and RAI

ablation to kill the rest of our thyroid, our bodies shouldn't produce

it anymore. Our TG levels should be unmeasurable.

However, if our bodies are still producing these antibodies (Anti-TG

or TgAb), they can interfere with the TG test, and make it in

accurate.

Cheers,

Alisa

Currently - 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: WBS (2 mCi) and 100 mCi RAI --- 6/6/2002: WBS - No mets

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 thoughts, tips, ideas -

http://groups.yahoo.com/group/Thyca/message/25430

[Guest guest]

> I keep seeing postings about Hashimoto's disease. What is it?

>

> Thanks,

> SoCal

> TT: 1-9103

Hashimoto's thyroiditis is an immune system disease - a chronic

inflammation of the thyroid. Our bodies usually produce antibodies

to fight things that invade it, but with Hashi's, the immune system

produces antibodies that attack and damage our own thyroid gland. It's

more common in women, and more common as we age.

Most people with Hashi's eventually will need to take T4, because

their thyroids stop functioning.

For those of us with Hashi's who have thyca, it affects us in this

way (obviously we have to take T4 anyway :-)):

The thyroglobulin (TG) test is used as a cancer marker. Only healthy

or cancerous thryoid tissue can produce TG. So, after surgery and RAI

ablation to kill the rest of our thyroid, our bodies shouldn't produce

it anymore. Our TG levels should be unmeasurable.

However, if our bodies are still producing these antibodies (Anti-TG

or TgAb), they can interfere with the TG test, and make it in

accurate.

Cheers,

Alisa

Currently - 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: WBS (2 mCi) and 100 mCi RAI --- 6/6/2002: WBS - No mets

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 thoughts, tips, ideas -

http://groups.yahoo.com/group/Thyca/message/25430