new to group

September 7, 2002

Hi, , and welcome to the group!

> Hello all,

>

> Just joined this group. I had thyroid cancer 25 years ago. Have

> been on synthetic thyroid ever since. My current dose is 0.3 MG of

> Levoxyl. My Dr's office called yesterday and said my dose was to

> high. Had a TSH blood test last week - results were less than 0.02.

> Why do you think he wants to cut my dose? Does a low TSH mean you

> are hyperthyroid? I'm confused.

As others have mentioned, the goal for thyca patients is to keep our

TSH <0.1. That is technically hyperthyroid (hyper is generally,

depending on the lab, about 0.3-5.0), and is done to prevent the

cancer from recurring. However, there is some concern about long term

bone loss with levels being very low. So it's a balancing act.

> In addition, I just started natural

> hormone replacement therapy last month because I was having lots of

> hot flashes, etc. Anyone have any information about menopause and

> not having a thyroid gland?

When you say natural hrt, are you taking estrogen? From

http://thyroid.about.com/library/weekly/aa032398.htm :

" Women taking estrogen [snip]may need to take more thyroid

replacement hormone. Estrogen increases the body's production of a

blood protein that binds thyroid hormone to it, making it inactive.

For women without thyroids in particular, this can cause a need to

increase the dosage level slightly, as there is no thyroid to

compensate. "

Essentially, yes, menopause can mean a change in thyroid hormone

levels. And, the bone loss issue becomes more important, since it

happens to post-menopausal women. You definitely should be getting a

bone density test (baseline) and taking calcium and doing other things

to ensure healthy bones.

>Sorry this is so rambling. I had almost

> my entire thyroid gland removed - they left a small amount to

> protect the parathyroid gland.

There are actually 4 of those little critters :-). Obviously, you did

not have RAI (radioiodine) treatment done - which is a bit different

than what is usually done these days.

> Thanks for any infomation you may have. Feel free to email me

> directly.

>

Cheers,

Alisa

2/15/2002: Nodule found during bad sore throat

2/27/2002: FNA - suspicious for pap

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

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

Hashimotos discovered

5/28/2002: TBS (2 mCi dose on 5/24) and 100 mCi RAI

6/6/2002: TBS - No sign of mets

Currently - 140mcg Levoxyl

Age: 48 Location: near Seattle WA

Please feel free to email me privately anytime

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

September 7, 2002

Hi, , and welcome to the group!

> Hello all,

>

> Just joined this group. I had thyroid cancer 25 years ago. Have

> been on synthetic thyroid ever since. My current dose is 0.3 MG of

> Levoxyl. My Dr's office called yesterday and said my dose was to

> high. Had a TSH blood test last week - results were less than 0.02.

> Why do you think he wants to cut my dose? Does a low TSH mean you

> are hyperthyroid? I'm confused.

As others have mentioned, the goal for thyca patients is to keep our

TSH <0.1. That is technically hyperthyroid (hyper is generally,

depending on the lab, about 0.3-5.0), and is done to prevent the

cancer from recurring. However, there is some concern about long term

bone loss with levels being very low. So it's a balancing act.

> In addition, I just started natural

> hormone replacement therapy last month because I was having lots of

> hot flashes, etc. Anyone have any information about menopause and

> not having a thyroid gland?

When you say natural hrt, are you taking estrogen? From

http://thyroid.about.com/library/weekly/aa032398.htm :

" Women taking estrogen [snip]may need to take more thyroid

replacement hormone. Estrogen increases the body's production of a

blood protein that binds thyroid hormone to it, making it inactive.

For women without thyroids in particular, this can cause a need to

increase the dosage level slightly, as there is no thyroid to

compensate. "

Essentially, yes, menopause can mean a change in thyroid hormone

levels. And, the bone loss issue becomes more important, since it

happens to post-menopausal women. You definitely should be getting a

bone density test (baseline) and taking calcium and doing other things

to ensure healthy bones.

>Sorry this is so rambling. I had almost

> my entire thyroid gland removed - they left a small amount to

> protect the parathyroid gland.

There are actually 4 of those little critters :-). Obviously, you did

not have RAI (radioiodine) treatment done - which is a bit different

than what is usually done these days.

> Thanks for any infomation you may have. Feel free to email me

> directly.

>

Cheers,

Alisa

2/15/2002: Nodule found during bad sore throat

2/27/2002: FNA - suspicious for pap

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

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

Hashimotos discovered

5/28/2002: TBS (2 mCi dose on 5/24) and 100 mCi RAI

6/6/2002: TBS - No sign of mets

Currently - 140mcg Levoxyl

Age: 48 Location: near Seattle WA

Please feel free to email me privately anytime

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

November 29, 2002

> Hi Everyone, Hi , I made it here, thanks to you. There is some awesome

information here:)

---

Sure is. It could keep one awake all night. LOL

Glad you made it. Would you like to tell us about your thyca journey thus far?

Hugs,

in Canton, OH

--

1965 TT, P/F thyca, no RAI, hypoparathyroidism

1982 Recurrence neck and chest, RAI 176 mCi

2001 Clean hypo scan PTL~!

November 29, 2002

> Hi Everyone, Hi , I made it here, thanks to you. There is some awesome

information here:)

---

Sure is. It could keep one awake all night. LOL

Glad you made it. Would you like to tell us about your thyca journey thus far?

Hugs,

in Canton, OH

--

1965 TT, P/F thyca, no RAI, hypoparathyroidism

1982 Recurrence neck and chest, RAI 176 mCi

2001 Clean hypo scan PTL~!

November 29, 2002

> Hi Everyone, Hi , I made it here, thanks to you. There is some awesome

information here:)

---

Sure is. It could keep one awake all night. LOL

Glad you made it. Would you like to tell us about your thyca journey thus far?

Hugs,

in Canton, OH

--

1965 TT, P/F thyca, no RAI, hypoparathyroidism

1982 Recurrence neck and chest, RAI 176 mCi

2001 Clean hypo scan PTL~!

November 30, 2002

Hi Ana,

Thanks for the email. I just recently found this site. In June of 2001 I

had a full thyroidectomy for pap/foll. thyroid cancer. Due to the my surgery

I now how parathyroid damage. Is this what you have too? I am taking

Synthroid and I don't feel very good on it. What type of thyroid medication

do you take. I am trying to get my doctor to change it. I hope you don't

mind all the questions:) Take care:)

November 30, 2002

Hi Ana,

Thanks for the email. I just recently found this site. In June of 2001 I

had a full thyroidectomy for pap/foll. thyroid cancer. Due to the my surgery

I now how parathyroid damage. Is this what you have too? I am taking

Synthroid and I don't feel very good on it. What type of thyroid medication

do you take. I am trying to get my doctor to change it. I hope you don't

mind all the questions:) Take care:)

November 30, 2002

Hi Jeni:

Yes, there is a lot of awesome (a new word to learn for me) and useful

information here. I´m a recent thyca member and I still learning (and learning

english too), but you can ask to me anything whatsoever (or whatever you want).

There are a lot of awesome folks here too.

Ana from Spain.

TT: 11-07-02; RAI: 27-08-02

Fol Ca, 3 cm, Hürthle cells (I think that I must to go to have a look to

abbreviations message, I know I wrote the number somewhere, but I can´t find it

now, sorry).

jeniflower3235 wrote: Hi Everyone, Hi , I made it

here, thanks to you. There is some

awesome information here:)

November 30, 2002

Hi Jeni:

Yes, there is a lot of awesome (a new word to learn for me) and useful

information here. I´m a recent thyca member and I still learning (and learning

english too), but you can ask to me anything whatsoever (or whatever you want).

There are a lot of awesome folks here too.

Ana from Spain.

TT: 11-07-02; RAI: 27-08-02

Fol Ca, 3 cm, Hürthle cells (I think that I must to go to have a look to

abbreviations message, I know I wrote the number somewhere, but I can´t find it

now, sorry).

jeniflower3235 wrote: Hi Everyone, Hi , I made it

here, thanks to you. There is some

awesome information here:)

November 30, 2002

Hi Jeni:

Yes, there is a lot of awesome (a new word to learn for me) and useful

information here. I´m a recent thyca member and I still learning (and learning

english too), but you can ask to me anything whatsoever (or whatever you want).

There are a lot of awesome folks here too.

Ana from Spain.

TT: 11-07-02; RAI: 27-08-02

Fol Ca, 3 cm, Hürthle cells (I think that I must to go to have a look to

abbreviations message, I know I wrote the number somewhere, but I can´t find it

now, sorry).

jeniflower3235 wrote: Hi Everyone, Hi , I made it

here, thanks to you. There is some

awesome information here:)

November 30, 2002

Hi again, :

Of course, I don´t mind the questions, but I´m afraid, I can´t give you worthy

responses. I have read something about parathyroids before my first partial

thyroidectomy (june, 5th), there are several parathyroid glands, depending the

person. Parathyroids are in relation with calcium. Doctors must analyse your

level of calcium, and if they give you calcium to take you must take it five

hours after the levotiroxyne, because the interferences of absortion.I don´t

know anything about this, but in this list are several persons with parathyroids

damage. You must do that:

You must send a message with a tittle like this: " I´m new, parathyroids damage,

need help " or " a scared newbie, parathyroids questions " or something similar,

and the lot of kind people here in the list with parathyroids knowledge could

response you, because you´ll see it is not easy to read all the messages, there

are a lot.

My meds? This week I started with 150 mcg of Euthirox (Euthyrox, don´t remember)

from monday to thursday and 200 mcg from friday to sunday. Euthirox is a

European name of levothyroxine (I think) T4. I could see in the list you have

Synthroid, Unythroid, etc. My TSH must go down to 0.05 (Hürthle cells), but most

of the thycans are OK with a TSH about 0.1. It take some time to doctors to find

your ideal level of levothyroxine dose, you must be patient, but also you must

tell to them how do you feel.

Well, see you later, good luck.

Ana, from Spain.

Feel free to correct my english please.

jeniflower32@... wrote: Hi Ana,

Thanks for the email. I just recently found this site. In June of 2001 I

had a full thyroidectomy for pap/foll. thyroid cancer. Due to the my surgery

I now how parathyroid damage. Is this what you have too? I am taking

Synthroid and I don't feel very good on it. What type of thyroid medication

do you take. I am trying to get my doctor to change it. I hope you don't

mind all the questions:) Take care:)

November 30, 2002

Hi again, :

Of course, I don´t mind the questions, but I´m afraid, I can´t give you worthy

responses. I have read something about parathyroids before my first partial

thyroidectomy (june, 5th), there are several parathyroid glands, depending the

person. Parathyroids are in relation with calcium. Doctors must analyse your

level of calcium, and if they give you calcium to take you must take it five

hours after the levotiroxyne, because the interferences of absortion.I don´t

know anything about this, but in this list are several persons with parathyroids

damage. You must do that:

You must send a message with a tittle like this: " I´m new, parathyroids damage,

need help " or " a scared newbie, parathyroids questions " or something similar,

and the lot of kind people here in the list with parathyroids knowledge could

response you, because you´ll see it is not easy to read all the messages, there

are a lot.

My meds? This week I started with 150 mcg of Euthirox (Euthyrox, don´t remember)

from monday to thursday and 200 mcg from friday to sunday. Euthirox is a

European name of levothyroxine (I think) T4. I could see in the list you have

Synthroid, Unythroid, etc. My TSH must go down to 0.05 (Hürthle cells), but most

of the thycans are OK with a TSH about 0.1. It take some time to doctors to find

your ideal level of levothyroxine dose, you must be patient, but also you must

tell to them how do you feel.

Well, see you later, good luck.

Ana, from Spain.

Feel free to correct my english please.

jeniflower32@... wrote: Hi Ana,

Thanks for the email. I just recently found this site. In June of 2001 I

had a full thyroidectomy for pap/foll. thyroid cancer. Due to the my surgery

I now how parathyroid damage. Is this what you have too? I am taking

Synthroid and I don't feel very good on it. What type of thyroid medication

do you take. I am trying to get my doctor to change it. I hope you don't

mind all the questions:) Take care:)

November 30, 2002

Hi again, :

Of course, I don´t mind the questions, but I´m afraid, I can´t give you worthy

responses. I have read something about parathyroids before my first partial

thyroidectomy (june, 5th), there are several parathyroid glands, depending the

person. Parathyroids are in relation with calcium. Doctors must analyse your

level of calcium, and if they give you calcium to take you must take it five

hours after the levotiroxyne, because the interferences of absortion.I don´t

know anything about this, but in this list are several persons with parathyroids

damage. You must do that:

You must send a message with a tittle like this: " I´m new, parathyroids damage,

need help " or " a scared newbie, parathyroids questions " or something similar,

and the lot of kind people here in the list with parathyroids knowledge could

response you, because you´ll see it is not easy to read all the messages, there

are a lot.

My meds? This week I started with 150 mcg of Euthirox (Euthyrox, don´t remember)

from monday to thursday and 200 mcg from friday to sunday. Euthirox is a

European name of levothyroxine (I think) T4. I could see in the list you have

Synthroid, Unythroid, etc. My TSH must go down to 0.05 (Hürthle cells), but most

of the thycans are OK with a TSH about 0.1. It take some time to doctors to find

your ideal level of levothyroxine dose, you must be patient, but also you must

tell to them how do you feel.

Well, see you later, good luck.

Ana, from Spain.

Feel free to correct my english please.

jeniflower32@... wrote: Hi Ana,

Thanks for the email. I just recently found this site. In June of 2001 I

had a full thyroidectomy for pap/foll. thyroid cancer. Due to the my surgery

I now how parathyroid damage. Is this what you have too? I am taking

Synthroid and I don't feel very good on it. What type of thyroid medication

do you take. I am trying to get my doctor to change it. I hope you don't

mind all the questions:) Take care:)

May 12, 2004

Hi Chuck,

Welcome to the group too! We do always love having new members. I am glad

you have had a successful transplant and I assume are doing well.

As Pierre responded, we have not been able to pinpoint a cause or a known

trigger of IgAN. I have never had problems with my tonsils at all. My doctor

suggested it may have been triggered by a strept infection that may have gone

untreated in my early teens, but who knows.

Welcome to our family though.

May 12, 2004

Hi Chuck. I've been on hemodialysis for about 18 months now, on the waiting

list. I'm hoping to join all you guys and gals with transplants anytime now.

You can read things about tonsils and IgAN. Who knows what has a connection

to what. I've always tended to connect my IgAN to a series of vaccinations I

got in the military, but, it's impossible to prove anything, and not for

lack of trying (as it would have meant a military medical pension for me).

It's probably just a coincidence though. We can all find things that we

suspect of having been the trigger, but truly, there's nothing to really

support any connection. My brother had constant problems with tonsillitis

when he was a child. In and out of the hospital numerous times. He's

middle-aged now, and he still has his tonsils, but no sign of any IgAN

whatsoever, and that's even after the extensive kidney donor workups he did

(he was rejected for something else in the end). I, on the other hand, have

never had any problems at all with my tonsils, and I'm the one on dialysis

right now because of IgAN. So, go figure.

You can take hundreds of IgAN patients, as we see in this group, and despite

looking very hard for it, never find any consistent pattern as to what might

have caused the IgAN. But of course, some people who do have problems with

their tonsils might be helped, if it also helps to reduce the frequency of

upper respiratory infections.

Pierre

new to group

> Hello All,

> I had been diagnosed with IgA eight years ago. Within a year of being

> informed of the news I had already started having problems. I spent

> eighteen months of my life on hemo dalais before receiving a

> transplant. I have read some about all of the circumstances of what

> lead up to being one of the people that acquire this diseases. I was

> hoping some one would confirm my suspicions of my theory of the

> reason I ended up with this.

> When I was young I had several problems with my tonsils. I never had

> them removed, has anyone else had this problem or read anything about

> this?

> Chuck Biddle

>

May 12, 2004